personal statement working with autism

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Should I mention my Autism in my personal statement?

It can be hard sometimes to know when and how to disclose any difficulties you may have, below we give you some guidance on what to do when applying to universities.

15 December 2021

The main purpose of the personal statement is to demonstrate to your university choices that you are a strong candidate to study the subject you’re applying for. This means that primarily you should be discussing your interest in the subject, what you have done to demonstrate that interest (such as wider reading, research, attending events, taking part in activities that relate to the subject), as well as what other qualities you possess that show you are a dedicated student, and what you have done that can demonstrate these skills.

If you feel that Autism has influenced your interest in your subject (for example, if perhaps your own diagnosis led you to an interest in psychology as an academic subject), or contributed to your study skills, then it might well be relevant to mention. However, if you just wish to inform your university choices about your Autism so they are aware of any additional support you require, then there will be plenty of time for you to declare this once you have received any offers. 

Once a university has made an offer to you, and you have accepted them as your firm or insurance choice, we recommend you get in touch with their student support or disability teams to outline what (if any) additional support you may require, and they can then work with you to ensure you have everything you need in place by the time you start studying there. 

Answered by:

Ben Lund-Conlon

Applying for university

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• Autism Job Search Tips and Strategies
• 4 years ago

5 Easy Steps to Build a CV

Creating an effective CV (Curriculum Vitae) is a crucial step in securing employment opportunities. For autistic adults, the process may come with its unique challenges and considerations. However, with careful planning and attention to detail, building a CV can be a rewarding experience that showcases your strengths and abilities. In this blog, we’ll explore five easy steps to help autistic adults create a CV that stands out.

Step 1: Self-Discovery

Before diving into the CV-building process, it’s essential to take some time for self-discovery. Understand your strengths, skills, and interests. Recognise what sets you apart. This self-awareness will help you craft a CV that accurately represents who you are.

Action items:

• Make a list of your strengths and skills.
• Identify your special interests or talents.
• Reflect on your past experiences and achievements.

Step 2: Structuring Your CV

A well-structured CV is your first opportunity to make a positive impression on potential employers. The basic structure typically includes contact information, a professional summary, education, work experience, and additional sections highlighting your skills and interests.

• Begin with your name, contact information, and a professional email address.
• Write a concise professional summary that highlights your key skills and experiences.
• Create sections for education and work experience, listing the most recent first.

Step 3: Highlighting Your Skills

Autistic adults often possess unique skills that can be highly valuable in the workplace. Your CV should prominently feature these strengths. Include both hard skills (technical or specific abilities) and soft skills (such as communication, teamwork, and problem-solving).

• List your technical skills, including any certifications or qualifications.
• Showcase your soft skills through examples or endorsements.
• Explain how your skills can benefit an employer.

Step 4: Tailoring Your CV

One size doesn’t fit all when it comes to CVs. Tailoring your CV for specific job applications is essential. Customise your CV for each position, emphasising the skills and experiences relevant to the role you’re applying for.

• Study the job description and requirements carefully.
• Adjust your professional summary and skills section to match the job’s needs.
• -Include relevant work experience or projects that align with the position.

Step 5: Accommodations and Disclosure

For many autistic individuals, making the decision to disclose their autism in the workplace can be challenging. It’s a personal choice, and there’s no one-size-fits-all answer. However, if you decide to disclose, it’s important to do so in a thoughtful and positive way.

• If you choose to disclose, consider doing so in your cover letter or during the interview.
• Mention any accommodations that can help you excel in the role.
• Emphasise the unique perspectives and strengths you bring as an autistic individual.

Additional Tips:

1. Use Clear Language:

Keep your CV language clear and concise. Avoid jargon or overly technical terms. Use simple, straightforward sentences to convey your experiences and skills.

2. Visual Clarity:

Utilise a clean and professional CV template with easy-to-read fonts and appropriate spacing. Ensure that the layout is visually appealing and organised.

3. Get Feedback:

Share your CV with a trusted friend, family member, or career councillor for feedback. They can provide valuable insights and suggestions for improvement.

4. Showcase Achievements:

When listing your work experiences, focus on your achievements and contributions. Use specific examples and quantify your successes when possible.

5. Keep Learning:

Invest in continuous learning and skill development. Mention any courses, workshops, or certifications you’ve completed, demonstrating your commitment to personal growth.

6. Be Honest and Positive:

Honesty is essential in a CV, but focus on the positive aspects of your experiences. Frame challenges as opportunities for growth and learning.

7. Address Employment Gaps:

If you have employment gaps, consider explaining them briefly in your CV or cover letter. Mention any activities or skills you developed during those periods.

In summary, building a CV as an autistic adult is a process that involves self-discovery, careful structuring, skill highlighting, and customisation for specific job applications. Whether you choose to disclose your autism or not, your CV should reflect your unique strengths and experiences. By following these easy steps and additional tips, you can create a compelling CV that opens doors to fulfilling employment opportunities. Remember that your neurodiversity is a valuable asset, and your CV is your chance to showcase the skills and talents that make you a standout candidate.

• Autistic Adult
• Autistic Job-seeker

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Demystifying my diagnosis of autism

Mayo Clinic Staff

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After learning about her condition, Mayo Clinic graduate student Lizz Cervantes addressed her educational needs — and chose her research focus. Here is her story.

When I was diagnosed — as an adult — with autism spectrum disorder, my first feeling was one of relief. The diagnosis explained to me why I had spent years feeling out of sync in social situations, wondering if I was responding appropriately to other people. The stress of daily interactions took an enormous amount of energy.

The diagnosis also explained some of the frustrations I experienced as a student in a research lab. The bright lights overhead often gnawed at my nerves. One pipette that makes a repetitive piercing sound (other students affectionately call it “The Beeper”) made me want to run out of the room.

With the diagnosis came grief and anger too. How had it taken so many years to get a diagnosis?

I had always been a good student and a nondisruptive kid. For years, my parents and teachers had addressed my anxieties but overlooked the source of the problem, as many do with well-behaved, female children. In fact, 80% of girls with autism spectrum disorder (ASD) remain undiagnosed at age 18, likely because they mask their symptoms instead of acting out as many boys do.

Regardless of when the diagnosis comes, people with ASD can feel as though they are “living as a square in a circle world,” as a therapist described it to me.

Taking steps to adapt

When I finally received a diagnosis, I was empowered to take steps to adapt. As a Ph.D. student in the Clinical and Translational Sciences track at Mayo Clinic Graduate School of Biomedical Sciences , I needed to find the right equipment that would enable me to work comfortably in a laboratory. I reached out to Mayo Clinic’s Office of Wellness and Academic Support — Disability Access Services , which assists Mayo Clinic College of Medicine and Science students who have a need for any type of disability accommodation. The office can help address accessibility issues in classrooms and lab spaces.

Within the office, a disability resource specialist met with me, provided information and offered several suggestions. I made arrangements to take periodic breaks from the lab to mitigate the effect of the bright, overhead lights. I learned about headphones I now wear at work to block out the sound of the dreaded Beeper. Among the suggested accommodations, I had the opportunity to choose those that would be helpful. Some of them, like extra time for exams, I don’t feel I need.

A new scientific goal

Importantly, my diagnosis steered my research focus. My scientific goal is to enable earlier diagnosis for ASD. I aim to develop an objective diagnostic test for autism and other neurodevelopmental disorders. I hope to help other children and families receive a diagnosis as early as possible so they can seek supportive care and adaptive equipment to improve their lives.

As I chose a dissertation advisor, I was excited to join the laboratory of reproductive immunologist Sylvie Girard, Ph.D. , in the Department of Immunology. Dr. Girard valued my life experiences and my desire to identify a practical biomarker that could be used in the clinic to identify infants at high risk of developing neurodevelopmental disorders.

We decided on the placenta as a place to begin looking for biomarkers. Pregnancy always involves inflammation, but too much inflammation can be detrimental to a growing fetus. The placenta, which is typically discarded after a baby is born, can serve as a proxy for the biological influences on childhood development, providing a window into the prenatal environment and fetal exposures.

At Mayo Clinic, we have the opportunity to study donated placental tissue samples for inflammatory markers. In addition, we can obtain consent from mothers to review data from their children’s medical charts as the children grow up. We then can correlate findings in the placenta with physicians’ clinical notes from routine pediatric appointments, observing children’s delays in hitting developmental milestones, up to age 24 months. The laboratory and clinical information may help us identify key molecules that could serve as early indicators of ASD risk.

Demystifying a diagnosis

For me, having information about my own ASD has been liberating and inspiring. However, as one ASD expert has explained about the variety of experiences that exist on the spectrum, “When you meet one person with autism — you’ve met one person with autism.” Often, when I disclose my diagnosis to others, a common response is, “You seem fine. Your autism must be very mild.” But autism can present challenges that others can’t see. My autism affects my life daily.

I am grateful to have the opportunity to modify my work environment so I can bring my expertise and enthusiasm to the important issue of neurodiversity. Through honest conversations and my laboratory research, I hope to continue demystifying ASD. —Lizz Cervantes

• Mayo Clinic Minute: Role of the larynx and how to protect it In case you missed it: This week’s Top 5 stories on social media

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Crafting Your ABA Personal Statement: Your Path to Becoming a BCBA

Dirghayu Kaushik

When it comes to pursuing a career in Applied Behavior Analysis (ABA) and becoming a Board Certified Behavior Analyst (BCBA), your personal statement plays a pivotal role.

This document serves as your gateway to the world of ABA, allowing you to analyze behavior, apply your skills in diverse classrooms, and make a meaningful impact on individuals with autism and other disorders.

In this comprehensive guide, we will delve deep into the nuances of crafting a stellar ABA personal statement, from its importance to the key elements that should be included.

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• Understanding the Significance of an ABA Personal Statement

In this section, we will explore the fundamental significance of an ABA personal statement in the context of your career aspirations. It’s not just a piece of writing; it’s your bridge to the world of ABA.

Why Your Personal Statement Matters

Your personal statement introduces you to graduate programs, mentors, and future colleagues. It’s a reflection of your passion, commitment, and understanding of applied behavior analysis. Let’s dive into why this document is so crucial.

The Power of Personal Statements in ABA 

Personal statements in ABA have the power to not only showcase your dedication but also set you apart from other applicants. We’ll explore how a well-crafted personal statement can be your ticket to success in the field.

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Analysis – The Cornerstone of ABA

Analysis is at the heart of ABA. This chapter delves deep into the concept of analysis and how it should be highlighted in your personal statement.

Mastering the Art of Behavior Analysis

Behavior analysis is the essence of ABA. Learn how to showcase your analytical skills in your personal statement, providing concrete examples of real-life situations where you’ve applied this core principle.

Case Studies in Behavior Analysis

Let’s explore some case studies in behavior analysis that you can include in your personal statement. These stories will demonstrate your practical experience and understanding of ABA.

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• Embracing the World of Behavior

Behavior is the canvas on which ABA practitioners work. This chapter explores how you can effectively discuss behavior in your personal statement.

Understanding and Influencing Behavior 

Explain how you’ve sought to understand and influence behavior in your personal and professional life. Share anecdotes of challenging situations and your successful interventions.

Positive Impact through Behavior Analysis

Narrate stories of how you’ve made a positive impact on someone’s life through ABA interventions. Highlight the transformative power of behavior analysis.

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• The Journey Towards BCBA Certification

This chapter outlines your educational path and the steps you’ve taken to become a BCBA.

Educational Background and ABA

Discuss your educational background, including your undergraduate and graduate studies. Mention any certifications or coursework related to ABA and behavioral analysis.

The Role of Certification 

Delve into the significance of certification in the ABA field. Explain your commitment to becoming a board-certified behavior analyst and how this journey aligns with your long-term career goals.

Navigating Diverse Classrooms with ABA

Your experiences in diverse classroom settings are valuable. This chapter guides you on how to effectively discuss these experiences in your personal statement.

Inclusivity in Education

Discuss the importance of inclusivity in education and how ABA has influenced your approach. Share anecdotes of your work as an educator or occupational therapist.

A Window into Classroom Dynamics 

Provide insights into the dynamics of diverse classrooms and how your knowledge of ABA has shaped your teaching methods and strategies.

A Passion for Early Intervention

If you have a passion for early intervention, this chapter is dedicated to showcasing it in your personal statement.

Early Childhood Education and ABA

Share your passion for early childhood education and how ABA can be a crucial tool in identifying and addressing behavioral issues in young children.

Impact in Early Intervention

Narrate stories of how your involvement in early intervention programs has made a positive impact on young children and their families. Highlight the transformative role of ABA in this context.

• Building a Strong Foundation

Your education and foundational knowledge are essential. This chapter provides guidance on highlighting your academic achievements.

The Academic Journey 

Discuss your academic journey, from undergraduate studies to postgraduate endeavors. Mention any research or coursework that demonstrates your commitment to ABA.

Building a Strong Foundation 

Explain how your academic experiences have built a strong foundation for your future as a BCBA. Emphasize the importance of continuous learning and growth in the field.

• The Path Forward as a BCBA

Becoming a Board Certified Behavior Analyst (BCBA) is not just a destination; it’s the beginning of a fulfilling career in the field of Applied Behavior Analysis (ABA). In this chapter, we will explore the journey that awaits you after earning your BCBA certification and how your ABA personal statement connects to your professional path.

Continued Professional Development

Your journey as a BCBA begins with a commitment to continuous professional development. ABA is a dynamic field with evolving best practices and research. As a BCBA, you’ll need to stay current with the latest advancements in ABA techniques, research findings, and ethical standards.

• Maintaining Your Certification: After becoming a BCBA, you will need to fulfill ongoing requirements to maintain your certification. This typically involves completing continuing education units (CEUs) and adhering to the Behavior Analyst Certification Board’s (BACB) ethical guidelines. Your personal statement can reflect your dedication to ongoing learning and adherence to ethical standards.
• Specialization and Advanced Training: Many BCBA practitioners choose to specialize in particular areas of ABA, such as autism spectrum disorder (ASD), organizational behavior management (OBM), or school psychology. You can use your personal statement to express your interest in these specialized fields and how you plan to pursue advanced training and expertise.
• Making a Lasting Impact

As a BCBA, your ultimate goal is to make a lasting and positive impact on the lives of individuals with behavioral challenges. Your ABA personal statement should reflect this commitment and your vision for the future.

• Client-Centered Approach: Emphasize your dedication to tailoring ABA interventions to the unique needs of each client. Share stories of your experiences where your client-centered approach led to significant improvements in behavior and quality of life.
• Collaboration and Advocacy: A critical aspect of being a BCBA is working collaboratively with other professionals, educators, and families to support individuals with behavioral disorders. Discuss your willingness to collaborate and advocate for individuals with autism, developmental disorders, or other conditions in educational and clinical settings.
• Contributing to the Field: Express your desire to contribute to the field of ABA through research, publication, and mentorship. Share your plans for conducting research or participating in projects that advance the knowledge and application of ABA principles.
• Leadership and Supervision: As a BCBA, you may take on leadership roles and provide supervision to other behavior analysts or technicians. Explain your aspirations to mentor and guide future ABA professionals, reinforcing your commitment to the growth of the field.

Wrap up your personal statement by expressing your commitment to making a lasting impact in the field of ABA. Share your vision for the future and how becoming a BCBA is a step towards achieving it.

In conclusion, your ABA personal statement is not just a document; it’s a testament to your passion and commitment to the field of applied behavior analysis.

With the insights provided in this extensive guide, you can craft a compelling personal statement that not only meets the 2500-word requirement but also resonates with admissions committees and mentors alike.

By aligning your personal statement with the core principles of ABA, you can embark on a rewarding journey towards becoming a BCBA and contributing significantly to the field of education and therapy.

What is the purpose of an ABA personal statement?

An ABA personal statement serves as your introduction to graduate programs and potential mentors. It allows you to showcase your passion, commitment, and understanding of applied behavior analysis. Essentially, it’s your statement of purpose, explaining why you aspire to become a BCBA.

How long should my ABA personal statement be?

While there is no strict word limit, a well-structured ABA personal statement typically ranges from 500 to 700 words. However, for more comprehensive content, such as in-depth guides, it can exceed 2500 words.

What should I include in my ABA personal statement?

Your ABA personal statement should include elements such as your personal journey and motivation for pursuing ABA, experiences applying ABA principles, and how ABA aligns with your career goals. It should also incorporate real-life anecdotes and examples of your work in the field.

How can I showcase my analytical skills in the personal statement?

To demonstrate your analytical skills, describe specific cases where you’ve analyzed behavior and implemented ABA strategies. Discuss the results and how they influenced your understanding of behavior. Include data-driven approaches you’ve used.

Is it essential to mention my educational background in the personal statement?

Yes, your educational background, especially in psychology or related fields, is important to demonstrate your foundation in ABA. Mention any relevant coursework, certifications, or degrees.

What should I focus on if I’m interested in early intervention?

If you have a passion for early intervention, express it in your personal statement. Discuss the importance of identifying and addressing behavioral issues in children at a young age. Highlight any relevant experiences or volunteer work in early intervention programs.

Can I include case studies in my ABA personal statement?

Absolutely, including case studies in your personal statement can be highly effective. These real-life examples illustrate your practical experience and understanding of ABA principles. Be sure to highlight the challenges faced and the successful interventions applied.

How can I make my ABA personal statement stand out from others?

To make your personal statement stand out, focus on your unique experiences and how they relate to ABA. Highlight any exceptional achievements, impactful stories, or innovative approaches you’ve taken in the field. Be genuine and passionate in your writing.

What is the role of certification in ABA, and should I mention it in my personal statement?

Certification, such as becoming a BCBA, is highly regarded in the ABA field. You should definitely mention your commitment to pursuing BCBA certification in your personal statement. Explain how this certification aligns with your long-term career goals and commitment to the profession.

How can I convey my vision for the future in my ABA personal statement?

In your personal statement, you can convey your vision for the future by discussing your long-term career goals, aspirations, and how you see yourself contributing to the field of ABA. Share your passion and dedication to making a lasting impact.

• Analysis - The Cornerstone of ABA

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Table of Contents

• • Understanding the Significance of an ABA Personal Statement
• • Analysis - The Cornerstone of ABA
• • Embracing the World of Behavior
• • The Journey Towards BCBA Certification
• • Building a Strong Foundation
• • The Path Forward as a BCBA
• • Making a Lasting Impact

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Autism Guide

Succeeding in Life with Autism

Step 4 – Getting a Job when your Autistic: How to write a Good Curriculum Vitae CV/Resume

What is a CV

A CV is an abbreviation of Curriculum Vitae which means “course of life.”  Which basically means what you have achieved in your life up until this point.  In the US it’s called a resume.

A CV is a document used for applying for a job, where you write about your: qualifications, experience, skills, qualities, references and personal details.  Once it’s completed you send it to a potential employer.  They will quickly scan over it, to see if you’re suitable.  If you make the grade they’ll give you an interview.

Not all jobs require a CV.  Some companies prefer you to send an application form instead (written about here ).

Tailored and Targeted CV

It’s easy to fall into the trap of only updating your CV once every few years.  Then sending the same CV for every job that you apply for.  If you’re applying for a specific advertised job, it’s much better to tailor your CV.  Ensuring it’s targeted for each job you apply for.  You can do this by:

• Writing a unique personal statement. Showing how you’re the best person for that individual job you’re applying for.
• Writing about your experience in a way that matches the type of person they request in their advertisement (or personal specification).
• Ensuring, where possible, all other information relates to that particular job.

A tailored CV really stands out from the general ones.  Plus, an employer can quickly identify if you’re a good match for the job they have available.  Giving you a much higher chance of success.

Speculative CV

As well as sending out a targeted CV, for a specific advertised job, you can send a speculative CV.  This type of CV is sent out to lots of different companies, even when they’re not currently hiring.  In a hope they will consider you for a future job.

Instead of tailoring your CV for each company, you can send a more general CV.  If you’re going for different types of jobs, it’s worth having a different CV for each type.  Such as one CV for an admin type role and another for a sales job.  It’s always a good idea to send a cover letter with your speculative CV (advice for writing one is here ).

Success Rate and Improving Your Chances of Success

You may send out a vast quantity of CVs, and not get a single reply.  This can be so upsetting and disheartening.  Especially if you’re autistic/Asperger’s as: you may not realise the reasons why, and you may take it personally.  I know it is easy for me to say; but don’t let this affect you.  Certainly don’t let it prevent you from continuing to try.  The more you try in life the higher your chance of success.  Keep believing in yourself and you will win, I am certain of it.

There have been a great number of studies that show the reply rate of CVs is very low.  Even when applying for specific advertised jobs.  For example, on the  University of Kent  (2018) website it shows that most graduates send out 70 CVs and only get 7 replies.  Out of those 7 replies, 3 or 4 of them are kind rejections.  It also shows that out of 25 applications you are likely to only get one that leads to an interview.

If you have sent out a large number of CVs, and have not had any interviews, never give in.  You can ask yourself what you can do to improve your chances.  Some things that you could change are below:

• Tweaking or completely changing your CV or application form.
• Such as volunteering in your spare time (evenings or weekends)
• Making a smaller job change, so that it lines up more with the job you want to do in the future.
• Take on more responsibility in your current job, which will give you more skills for a future role.
• If you are studying, get involved in extra-curricular activities (which I know is hard for someone with autism/Asperger’s, but it’s worth the discomfort sometimes).
• Get a part time job alongside studying (or if your working part time, have two part time jobs).
• Getting higher or more relevant qualifications.
• Taking on an agency, temporary or lower paid job. For a short time, to build up more relevant experience.
• Help from careers advisors.

Why Companies Don’t Reply to Every Applicant

When a company advertises for a job they could easily get 100 people applying for each position.  This means they will need to look at 100 CVs.

They quickly scan each CV for relevant information.  If they looked at each CV closely, a job that takes a couple of hours, could turn into a job that could take a day or two.  They put the good CVs in one pile (which might be 10 out of the 100) and then discard the rest.

They might be kind and reply to the 90 unsuccessful applicants.  But most of the time they don’t want to spend the time it takes to write the letters, put them in envelopes and the cost of posting them out.  So for the most part, if you are unsuccessful, you don’t hear from them again.

Good Tips to Follow

Although there are no particular formal rules to writing a CV, there’s lots of information about good practise.  Of course these are general rules, and there are occasionally exceptions.  These rules are below:

• Fit the CV on a maximum of two pages.
• Use a font that is large enough to read, but not too large that it takes up vital room. I find a font size of about 12 is just right.
• Use headings for each block of information you’re writing about. Such as a heading for your qualifications.
• Put qualifications and experience in the order of most recent first.
• Your photograph (unless they ask for it)
• Primary/elementary school
• Qualifications that you got bad grades in (unless these are the only ones you have)
• Unless your hobbies relate to the job.
• Tailor or target the CV for each job you’re applying for.
• Use a good template, links are at the end.

Mistakes People Make on Their CVs

There are a large number of mistakes you can make when writing a CV.  Sometimes simple errors can be the difference from getting to the interview stage, to being unsuccessful.  Some of the most common mistakes are:

• Making spelling and grammar errors.
• Spelling a company name or address incorrectly.
• The CV being too cluttered, by trying to fit too much on two pages.
• Not being formal enough. Such as using slang or informal words.
• Telling lies about qualifications or work history.
• Hobbies that are not relevant to the job.
• Include this, but be creative when explaining what you did, without lying.
• Including a non-professional email address like [email protected] .
• Not formatting your CV correctly. Such as leaving out headings and bullet points.  Or using different font sizes and types throughout the document.
• Using bright colours, images and patterns such as borders.
• Using cliché words like flexible, good time management skills  and being a team player. It is much better to give personal examples instead. 
• For example: instead of writing you’re a team player you can say “I recently worked with the marketing department to develop and launch our company’s new website.
• You don’t need to use the title Curriculum Vitae as the employer will know what it is, from the format of the document. It is much better to use your name as the main title.

Should you Declare You Have High Functioning Autism/Asperger’s 

There is no clear right or wrong answer, as to whether you should declare if your autistic/Asperger’s on your CV.  I believe that a CV should only outline the positives that you can bring to the role.  You are selling yourself based on all of your best aspects.  There are many positives to being autistic/Asperger’s, but most people don’t know or understand this.  Most people will just see this as being a disability, with all of the negative characteristics.

There are a limited number of employers, that are very forward thinking and employ people with a wide range of disabilities.  They would probably give you a fair shot.  So long as you have the right qualifications and experience.  By telling them, they may even make the application process fairer, by changing the interview format for example.  In this case it might be worth mentioning.

In a previous blog post I wrote about the shocking statistics that show how such a few people with autism/Asperger’s secure a paid job (part time or full time).  I believe that a lot of this is down to prejudice and not understanding autism fully.  Therefore, if you’re not sure about the company (and their stance on employing people with autism/Asperger’s) it might be best to not mention it at this stage.  But it’s entirely your choice.

For me I’ve never had to mention it, as I wasn’t diagnosed with autism until my mid 30s.  I told my current employer, after being employed for a few years.

In the future I will seriously consider telling employers.  But I don’t think I’d put this information on a CV.  I would weigh up whether or not to add it to an application form, if there is a tick box.

CV Templates

It’s quite time consuming to start a CV from scratch.  So here are a couple of really good links that provide CV templates you can download for free and put in your own details.

https://www.monster.co.uk/career-advice/cv-writing-tips/cv-templates

https://www.prospects.ac.uk/careers-advice/cvs-and-cover-letters/example-cvs

Monster (2018)  https://www.monster.co.uk/career-advice/cv-writing-tips/cv-templates

University of Kent (2018)  https://www.kent.ac.uk/careers/cv.htm

Prospectus (2018)  https://www.prospects.ac.uk/careers-advice/cvs-and-cover-letters/example-cvs

• ← Step 5 – Getting a Job when your Autistic: How to Write a Good Application Form
• Step 3 – Getting a Job when your Autistic: Guide to Getting the Right Qualifications →

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One thought on “ step 4 – getting a job when your autistic: how to write a good curriculum vitae cv/resume ”.

I’m curious if anyone on the spectrum has ever dealt with an employer that refuses to believe an employee is autistic and has come up with every other diagnosis under the sun; anxiety, bipolar, depression, improper dialogue, lack of social ques, temperament, refusing to accept common medical treatments as legitimate – and so on? Any advice, stories, and/or coping mechanisms would be appreciated.

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Home » Transitioning to Adulthood » A Guide on How to Work with Autistic Adults

A Guide on How to Work with Autistic Adults

By   Donnesa McPherson, AAS

July 8, 2024

Creating a supportive work environment involves understanding how to work with autistic adults effectively. Whether you are a manager, team leader, or working in any other position, you aim to maintain a happy and balanced workplace with your autistic colleagues. After all, it’s important to ensure all employees feel comfortable and empowered.

Together, we’ll learn how you can improve your workplace, support autistic adults, and foster an inclusive environment for everyone.

Download your FREE guide on 

Top Autism Jobs: Choosing the Best Careers for People With Autism

Common challenges autistic workers face

It is an unfortunate reality that employers don’t always look at things in this light. The reality is that autistic adults can sometimes face bullying based on preformed biases, as well as potential discrimination .

Because of the lack of understanding, a lot of people struggle when working with autistic adults. Studies show that some behaviors associated with autism could cause barriers, either with the autistic person or a neurotypical coworker. These often include:

• a lack of communication methods and social skills ,
• repetitive behaviors and movements,
• sensory issues and overload.

Other conditions can often occur alongside autism, such as ADHD , anxiety, and depression. The work environment might not provide enough support, leading to misunderstandings like:

• stigma about autism,
• lack of support services and modifications during interviews and employment,
• absence of necessary accommodations.

Tips for working with autistic adults

The fact you’re here means you’re already making the first step in creating a more inclusive workplace for everyone. Working with autistic people doesn’t have to be challenging. Here are tips that can help both you and your neurodivergent co-workers enjoy your work environment.

1. Promote understanding

A good starting point is to promote an understanding and inviting environment that avoids preconceived autism stigma . Educate employees with clear, up-to-date information and invite family members or autism advocates to speak and answer questions.

Addressing the lack of support services and modifications is crucial. Job coaches who understand autism can help train and support employees, ensuring a less stressful learning environment.

Providing necessary accommodations is also important. Tools for nonverbal communication or writing difficulties can make a significant difference. Stay informed about helpful technologies and accommodations, and consult with professionals to plan and provide the needed support.

2. Do the research

The first step is always to be aware and do the research. Also, getting to know employees and coworkers is a must for any business to succeed.

There are services that can help provide both employer and employee support that could help improve the work environment. For example, vocational therapy may be especially beneficial for both employees and employers.

Vocational training can help provide the individual with support like:

• potential workplace modification and/or accommodations,
• restoration of physical and/or mental ability,
• counseling,
• continuing education,
• additional workplace training.

As an employer, it is good to know about vocational and other therapies and ways that you can offer support. Staying up to date, keeping in contact, and getting to know your employees generally helps boost morale and may help inspire everyone to do the same.

3. Consider adding an idea/question box to the door

A positive work environment will help foster inclusion and the potential for quality feedback from employees. Adults with autism may have difficulty communicating, so you should think about ways to make it easier for them.

One way could be adding a simple box to the door where everyone can submit their ideas or questions. This is a box that could be set up outside a direct supervisor’s door, lunchroom, or other easy-access area where someone could fill out a slip of paper and put it inside.

It would be a good idea to check in with these ideas so people don’t feel it’s been a waste even putting in their idea. Always remember – it’s easier to share ideas where you feel comfortable and accepted.

4. Organize Zoom meetings

Zoom meetings have made a world of difference for many different people, from classrooms to homes to the office. It has become an area that people are becoming more comfortable using.

If someone is having a hard time communicating, there is a chat box where they can type in their ideas to be read by the other attendees. There are other tools like this that make it easier to communicate and interact in a less stressful way.

5. Use different communication apps

There are numerous ways to communicate without it being face-to-face, including various apps available for this purpose. One of the ways they are helping autistic adults is by alleviating some of the social anxiety and sensory overload that can occur face-to-face.

The tools are also there to help make it a little easier to navigate different areas like social skills, time management, and calming strategies if they are feeling overloaded.

6. Get to know each other

Getting to know your employees and fellow coworkers should be an ongoing goal. If you have a work environment where people are accepted and receive support and praise, then I would go ahead and say that it sounds like you’re well on your way.

Try the next fun team-building activity you found on that Pinterest board! It will be those fun ideas that help foster the team-building spirit and keep the self-esteem and morale of coworkers increasing.

There is no definitive list of meet this and do that because there are so many different people, personalities, needs, etc. That is what helps make a diverse workplace work for the best.

Find what works best for your workplace

We have discussed ways of making workflow easier for the autistic employee and how that works in a happy, open, and inviting work environment. It’s important to remember that the relationships start during the job interviews and continue through the employment journey.

Many adults with ASD diagnosis may have specific expectations of the work environment, just as there are expectations for them as employees. Finding the synergy and flow and what tools and support would best help build up and make these expectations realities that benefit the employees and employers.

With a little bit of out-of-the-box thinking with an ear that is ready to hear what may need to change, the work environment can be a place that is understanding and accepting of the many differences that can make up a diverse workplace.

Q:  What is the best way to work with someone with autism?

A: The best way to work with someone with autism is to communicate clearly and provide structured, consistent routines while being patient and understanding of their unique needs and perspectives. Creating an inclusive environment that accommodates sensory sensitivities and encourages their strengths can greatly enhance collaboration and productivity.

Q: How to be successful as an autistic adult?

A: Success as an autistic adult involves leveraging one’s unique strengths and seeking support when needed, such as through specialized career counseling or therapy. Building a supportive network of understanding friends, family, and colleagues can also foster a positive environment for personal and professional growth.

Q: How to deal with autism anger in adults?

A: To manage autism-related anger in adults, it is essential to identify and address underlying triggers through personalized strategies like sensory adjustments, clear communication, and coping techniques such as mindfulness or behavioral therapy. 

References:

Gal, E., Golan, O., & Goldfarb, Y. (2021). A Self-Determination Theory Approach to Work Motivation of Autistic Adults: A Qualitative Exploratory Study. https://link.springer.com/article/10.1007/s10803-021-05185-4

Gonzales, M. (2022). What Life Is Like for Autistic Workers: These employees often face discrimination, bias and bullying in the workplace. https://www.shrm.org/resourcesandtools/hr-topics/behavioral-competencies/global-and-cultural-effectiveness/pages/what-life-is-like-for-autistic-workers.aspx

Cope R, Remington A. The Strengths and Abilities of Autistic People in the Workplace. Autism Adulthood. 2022 Mar 1;4(1):22-31. doi: 10.1089/aut.2021.0037. Epub 2022 Mar 9. PMID: 36605563; PMCID: PMC8992926. https://pubmed.ncbi.nlm.nih.gov/36605563/  

Black, M.H., Mahdi, S., Milbourn, B., Scott, M., Gerber, A., Esposito, C., Falkmer, M., Lerner, M.D., Halladay, A., Ström, E., D’Angelo, A., Falkmer, T., Bölte, S. and Girdler, S. (2020), Multi-informant International Perspectives on the Facilitators and Barriers to Employment for Autistic Adults. Autism Research, 13: 1195-1214. https://doi.org/10.1002/aur.2288  

Articles for further reading:

Can You Be Fired for Being Autistic?

• High School Student Helps Bring Neurodiversity to the Workplace
• Meet a Brewery Owner Helping Autistic Adults Build Careers

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• Information and Advice
• UCL Services
• Student Stories
• Professional Interviews
• 1. Before you apply
• 2. Preparing for arrival
• 3. Settling into uni life
• 4. Starting your course
• 5. Managing stress

Applying to university

Find out more about applying to University generally, and about our university’s admission process.

Once you have chosen which course(s) you would be interested in studying you need to make an application to your chosen University. Depending on the course your application will need to be made through the Universities and Colleges Admissions Service (UCAS) or directly to the University.

Applications procedures will differ depending on the University and the course you have chosen to study but you may be invited to attend an interview, complete tests or submit examples of your work as part of this process.

You should also think about declaring your autism on your application form, this will not impact on the Universities decision to offer/not offer a place but it will enable you to access support and adjustments if required.

How could this affect me?

Knowing more about the application and admissions process will enable you to prepare, and think about whether you require any support or adjustments through this process e.g. extra time for interviews. If you have any concerns about the admissions process and would like to talk about your options for support, you can contact the Disability Advice team.

What to do next?

Become familiar with the admissions process and consider telling the university about your autism, practical tips.

• Check if you need to apply through UCAS (in most cases), or if you apply directly to the university
• Find out what evidence you need to support your application; examples of work, a portfolio or a personal statement, for example (see below for advice on writing a personal statement).
• Check when you should apply. Make a note of important deadline dates.
• Consider if you will require any adjustments or support during the interview or selection event; contact the Disability Support team if you feel that this would be useful for you.
• Once you have received a firm offer, consider applying for Disabled Students’ Allowances (DSAs) ; the process can sometimes take a while, so the sooner you apply, the more likely it is that you can get some support in place for the start of your studies.

Tips for writing a personal statement

Many universities will ask you to submit a personal statement as part of your application.  This statement is your opportunity to explain why you believe you are a strong candidate for a particular course of study.  Write your statement in rough to start with, and get someone to check it over before you submit it; remember that first impressions count!

Research the course that you are applying for thoroughly, and identify the skills and interests that you will need to study it.  Your statement should highlight:

• What interests you about the subject
• Why you have chosen this course in particular
• What skills you bring to the course
• Your relevant experience
• Your ambitions and how you see this course fulfilling those ambitions.
• Keep your statement concise, preferably one side of A4 (around 500-600 words).
• Make sure that your sentences and paragraphs are structured correctly.
• Do not use slang or abbreviations.
• Each point you discuss should flow on to the next point.
• Try to avoid starting every sentence with ‘I’.

Questions to think about

• What is the application process for your chosen course?
• What do you need to submit to support your application?
• Do you need to write a personal statement?
• Do you need to provide evidence in the form of a portfolio of work?
• When are the deadlines for applications?
• When should you expect to hear if your application has been successful?
• Who do you need to contact at your chosen university to discuss disability support?

Additional information and links

You can find out more about applying to UCL here .    You can declare your autism on your application form or contact the  UCL Student Support and Wellbeing team directly.

• Telling the university about your autism
• A student’s view on sharing an autism diagnosis

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Helping people with autism reach their full potential

Psychologists are working from many angles to enhance the lives of people with autism

Vol. 51, No. 5 Print version: page 26

• Autism Spectrum Disorder

People with autism are an extraordinarily diverse group, with a broad range of interests, abilities and experiences. Approximately 1 in 59 children in the United States is diagnosed with autism, and each year, more than 60,000 teenagers with autism age out of the school system and launch into adulthood.

These groups—both children and adults—need support, but that support isn’t always available. Though the behavioral symptoms of autism start to emerge at about 18 months of age, children’s median age at diagnosis remains stubbornly stuck at around ages 4 to 5. Even after diagnosis, many children don’t receive the services they need because of long waitlists for treatment or inadequate insurance. And the service system for adults with autism is particularly sparse, with research showing that people with autism often struggle to live independently, do not receive much-needed services and are disproportionately unemployed.

Psychologists are among those working to address all these gaps, through efforts ranging from conducting basic research on development to designing interventions to engaging in the delicate work of implementing those interventions effectively in the community. And as children diagnosed with autism grow up, this field of study in psychology is poised to expand far beyond its roots in child development.

“Psychologists play a key role in autism research, from defining the earliest symptoms to developing and testing new interventions,” says Geraldine Dawson, PhD, a child clinical psychologist and the director of the Duke Center for Autism and Brain Development. “A psychologist’s understanding of clinical assessment, development and behavioral principles has greatly informed our understanding of autism and its treatment.”

Autism in infancy

Autism occurs on a spectrum characterized by varying degrees of repetitive behavior, difficulties with verbal and nonverbal communication, and deficits in social-emotional reciprocity. In recent years, self-advocates with autism have pushed back against language centered around finding a “cure” for autism, preferring to focus on describing autism as a difference, not a disorder. Some researchers, too, have stepped away from the notion of “curing” autism.

“Autism is not a disease,” says Ami Klin, PhD, a clinical psychologist, director of the Marcus Autism Center in Atlanta and chief of the Division of Autism and Developmental Disabilities at Emory University School of Medicine. “It’s more like a trait that may or may not translate into a disability. Whether or not it translates to a disability is within our power to influence.”

As this shift in framing has become more common, autism research has been boosted by major funding pushes by the National Institutes of Health (NIH) and other federal agencies. One focus is on providing extra scaffolding and support for children with autism when they are very young. Infants who develop autism show similar patterns of unusual brain growth, particularly the hyperexpansion of cortical surface area between 6 and 12 months of age, and an overgrowth of brain volume and disruption in functional connectivity between 12 and 24 months of age, according to a review co-authored by Joseph Piven, MD, a psychiatrist and the director of the University of North Carolina’s (UNC) Carolina Institute for Developmental Disabilities ( Molecular Psychiatry , Vol. 22, No. 10, 2017 ). These observations were made in younger siblings of children with autism—who are at high risk of developing autism themselves—as part of an NIH-funded multisite research project. Researchers like Piven think that the brain differences found in these high-risk children will also be found in children who are the first in their families with a diagnosis. If the results do generalize across the two groups, they could lead to brain imaging–based autism diagnoses before symptoms emerge. Earlier diagnosis, in turn, could lead to more effective interventions.

“Infancy is a period where the brain is maximally malleable,” Piven says.

To intervene that early, though, researchers need to find biomarkers for autism that can be reliably detected in the first year of life. This work is in its early stages, but psychologists have found some potential candidates. UNC School of Medicine psychologist Heather Hazlett, PhD, and colleagues found that MRI measurements of cortical surface and brain volume overgrowth at 6 and 12 months of age could predict later autism diagnoses with 94% accuracy ( Nature , Vol. 542, No. 7641, 2017 ). Another possible candidate for individual-level predictions of autism is functional connectivity, the correlation in brain activity across brain regions, Piven says. In a study of 56 infants, he and his colleagues found that functional connectivity measured with MRI at 6 months correctly predicted autism diagnoses at 24 months with an overall accuracy of 96% (Emerson, R.W., et al., Science Translational Medicine , Vol. 9, No. 393, 2017 ).

Gaze-tracking technology might be another avenue for early diagnosis, according to Klin. In 2013, Klin and neuroscientist Warren Jones, PhD, found that infants who would later be diagnosed with autism showed a decline in time spent looking at other people’s eyes beginning after 2 months of age ( Nature , Vol. 504, No. 7480, 2013 ). The researchers are now testing a device designed to use eye-gaze information to capture autism risk in babies and young toddlers.

Because there aren’t any clinical diagnostic tests for autism before 18 months of age, there is little research on interventions in infants and toddlers. But there is good reason to think that malleable infant brains would take well to treatment. Klin and his team are part of the Baby Siblings Research Consortium, a project that prospectively follows the younger siblings of children with autism. So far, Klin says, the research suggests that the baby siblings eventually diagnosed with autism have better outcomes than their older siblings. Their work further suggests that these advantages have something to do with the younger siblings being followed prospectively (Micheletti, M., et al., Journal of Child Psychology and Psychiatry , Vol. 61, No. 1, 2020 ). “This kind of very intensive surveillance of these at-risk children could in fact have a positive effect on these children,” Klin says.

Part of the younger siblings’ advantage could be due to their parents having already been coached on ways to engage a child with autism. The best way to the brain of a baby with autism is through his or her parents, says Dawson. Typically, developing children absorb information from social interactions with their caregivers, Dawson says, adding that “what we want to do is have strategies for the babies who might be developing autism or at risk for autism, so they’re also getting those same learning opportunities.”

Expanding access, improving implementation

There are numerous existing therapies and supports that have been successful in helping kids with autism reach their potential, but there are also barriers to support at every step from screening to diagnosis to access to services. Pediatricians sometimes fail to use common screening measures according to the standardized instructions, says Diana Robins, PhD, a clinical psychologist and interim director of the A.J. Drexel Autism Institute at Drexel University. Robins helped develop one of the most commonly used tools, the Modified Checklist for Autism in Toddlers (M-CHAT), which includes a round of standardized questions to ask when initial screening raises red flags ( Pediatrics , Vol. 133, No. 1, 2014 ). But pediatricians sometimes cherry-pick a few questions from the checklist instead of using the whole scale, Robins says, and often fail to ask the standardized follow-up questions for children who may be on the spectrum.

Research by David Mandell, ScD, a professor of psychiatry at the University of Pennsylvania, has found racial and ethnic disparities in autism diagnosis, suggesting that underserved populations, in particular, aren’t getting the screenings and referrals they need ( American Journal of Public Health , Vol. 99, No. 3, 2009 ). Mandell’s work has also shown that when preschoolers get early intervention in research settings, the resulting improvements in communication, daily functioning, social skills and other developmental domains are often quite large (Nahmias, A.S., et al., The Journal of Child Psychology and Psychiatry , Vol. 60, No. 11, 2019 ). When those same interventions are studied in the community, outside tightly controlled research settings, the effects are still there, but smaller. Part of the problem, Robins says, is access. Most young children “are not getting enough dosage, and certainly not enough high-quality intervention, by people who are trained,” she says.

Applied behavior analysis, or ABA, for example, is considered the gold standard for autism intervention. This therapy focuses on reinforcing specific behaviors, such as communication or self-care. Though ABA has its critics, who argue that reinforcement for behaviors focuses too much on forcing children with autism to act typical without addressing their psychological and mental health needs, behavioral interventions have a substantial amount of research supporting their efficacy. A review co-authored by Dawson found that such behavioral interventions can improve language, cognitive abilities and social communication while reducing aggression and anxiety symptoms ( Current Opinion in Pediatrics , Vol. 23, No. 6, 2011 ). But many children end up on years-long waitlists for behavioral interventions, owing to provider shortages and low Medicaid reimbursement rates. For some kids, a shortage of services may delay their diagnoses: Pediatricians sometimes hesitate to screen for autism when they know they have nowhere to refer a child for treatment, Robins says.

While behavioral interventions are effective for those who can access them, there are currently no pharmaceutical treatments specifically for autism. Children are sometimes prescribed atypical anti­psychotics, antiepileptic drugs and other pharmaceuticals off-label, but evidence of their efficacy is often mixed or lacking, and side effects can be intolerable, according to an article co-authored by Na Young Ji, MD, a child and adolescent psychiatrist at the Kennedy Krieger Institute in Baltimore ( Current Opinion in Psychiatry , Vol. 28, No. 2, 2015).

Psychologists are tackling many of these problems. One push is to train pediatricians to implement screening correctly, Robins says. Another top priority is to do research examining whether early diagnosis yields quicker intervention, which in turn is expected to yield better outcomes in children with autism. Such evidence would help make the case that universal early screening should be the national policy in the United States (see A push for universal screening ).

Psychologists are also working to overcome the challenges of implementing screenings and diagnoses in diverse racial and socioeconomic environments. The role of socioeconomic status in autism outcomes has been underappreciated, Klin notes. The Mind the Gap project, a multisite study led by Connie Kasari, PhD, at the University of California, Los Angeles (UCLA), focuses on under-resourced and underserved populations, probing the barriers to autism diagnosis and services in these groups. Parents often feel isolated and uncertain of how to navigate the medical and service systems, says Melanie Pellecchia, PhD, a psychologist at the University of Pennsylvania who is involved in the research. Many are dealing with concurrent problems, like poverty and inadequate housing. These insights have informed a second project, called Building Better Bridges, which aims to match families with peer mentors, fellow parents who have been through the complicated process of getting their children help. The program is now part of a randomized trial.

Perhaps the most glaring gap for people with autism is the evaporation of support when they reach adulthood. Though national numbers are hard to come by, regional studies suggest unemployment is high among adults with autism. Cognitive abilities are not protective: One small study by developmental psychologist Julie Taylor, PhD, of Vanderbilt University, found that young adults with autism and no intellectual disabilities were three times more likely than those with autism and an intellectual disability to have no regular daytime activities, likely because there simply aren’t many employment or day programs designed for people of average or above-average intelligence with autism ( Journal of Autism and Developmental Disorders , Vol. 41, No. 5, 2011 ). Many adults with autism live at home, and research by psychologist Laura Klinger, PhD, of the UNC School of Medicine, and colleagues has found that 54% of the caregivers of these adults report not being able to access enough services for help (Dudley, K.M., et al., Journal of Autism and Developmental Disorders , Vol. 49, No. 2, 2019 ). Meanwhile, people with autism and comorbid mental health conditions can fall through the cracks. “If we have a person who is nonverbal, they could be depressed, but how would they tell us in words?” says Catherine Lord, PhD, a clinical psychologist at the David Geffen School of Medicine at UCLA. “We have to be able to address the different kinds of issues that are going to come up.”

To address these gaps, Klinger has spearheaded the creation of a program at North Carolina community colleges called the TEACCH School Transition to Employment and Postsecondary Education program, or T-STEP. This program, administered through a set of long-running outpatient clinics affiliated with UNC called TEACCH, aims to teach young adults with autism who have earned or are earning a high-school equivalency (GED) certificate the emotion regulation, executive function and professional/social skills they’ll need to succeed in further education and jobs. Students also practice these skills at a volunteer internship site and receive individual education career counseling. Results from a pilot study of 75 students in the program show improvements in executive function and employment readiness skills, Klinger says, and declines in depression symptoms. Klinger and her team have now secured funding from the National Institute on Disability, Independent Living, and Rehabilitation Research and from the Department of Defense to conduct research on T-STEP using comparison groups. This program isn’t the only college-based option for students with autism, but these resources are still fairly rare. At schools where they do exist, they often have limited space and sometimes cost additional tuition dollars.

Aging with autism is another area about which little is known. People with autism may have elevated susceptibility to age-related cognitive decline, according to research by Klinger and psychology doctoral student Patrick Powell at the Georgia Institute of Technology ( Journal of Autism and Developmental Disorders , Vol. 47, No. 10, 2017 ). It’s not yet clear whether that susceptibility is due to physiological processes related to autism, or whether comorbid mental health conditions and lack of meaningful activities contribute, Klinger says. Another of Klinger’s projects is to study older adults with autism. She and her colleagues are now recruiting study participants from the 1960s, 1970s and 1980s who were seen at TEACCH clinics. They plan to survey the participants about their needs as well as measure how symptoms and skills changed from when they were first seen as children into adulthood.

This type of work has barely begun; there is still an “absolute lack” of efficacy data on interventions for adults with autism, Klinger says, and a massive void where research on implementation of interventions should be. “Most of the literature that is there, including my own research, is documenting need,” she says. “It isn’t documenting the efficacy of interventions. For anybody interested in creating evidence-based interventions or studying the efficacy of current interventions for adults with autism, this is a wide-open field.”

Inter-dependent roles

Psychologists are contributing to the autism field from all areas of the discipline, including:

• Researchers Researchers study the underlying brain basis of autism, which could lead to earlier diagnoses and more effective treatments.
• Clinical researchers Clinician-scientists design evidence-based interventions to improve autism diagnosis and treatment and address racial and ethnic disparities.
• Clinicians Clinicians treat children and adults with autism and develop programs to increase their success in schools and the workforce.
• Advocacy and policy Policy influencers advocate for policies including universal autism screening.

Further reading

Cerebrospinal Fluid and the Early Brain Development of Autism   Shen, M.D., Journal of Neurodevelopmental Disorders , 2018

Strategies to Engage Underrepresented Parents in Child Intervention Services: A Review of Effectiveness and Co-occurring Use Pellecchia, M., et al., Journal of Child and Family Studies , 2018

Transition to Higher Education for Students With Autism: A Systematic Literature Review Nuske, A., et al., Journal of Diversity in Higher Education , 2019

Recommended Reading

About this series

In this Monitor series, we explore how psychologists address some of society’s greatest challenges through their work in distinct—yet interdependent—roles as researchers, practitioners, applied experts, educators, advocates and more.

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Working with autism - best practice guidelines for psychologists

This best practice guidance is for practitioner psychologists who work with people with autism and their families and carers.

18 August 2021

By BPS Practice Board

Due to wide diversity within the autistic population (in terms of how autism presents and the level of individual needs), the guidance has attempted to be as broad in its application as possible. It does not support any particular theoretical or therapeutic approach.

This BPS guidance is centred on the importance of involving individuals with autism in the decision making process about their assessment and the approaches taken.

It recognises the importance of involving parents/carers and indeed the whole family in this process and that family systems and dynamics can vary greatly.

It focuses on the role of psychologists as practitioners, in understanding these issues and supporting others in adjusting what approaches are offered.

The important role of psychologists as drivers of change within a system or service, the commissioning processes and as contributors to a multidisciplinary approach and to research, is also included.

The guidance covers the many different contexts in which psychologists work – including with children and young people, with adults and older adults, in education, health, social care, employment and in criminal justice settings.

Download the guideline

This guidance was prepared by the Autism Task and Finish Group, under the auspices of the Practice Board. A widespread consultation on a draft document was conducted and the finalised guidance incorporates many of the resulting revisions and suggested text.

In keeping with BPS policy, the document will undergo a light review touch 2.5 years following publication and a full review after 5 years.

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Winner of Student Open Letter Contest

Accepting Autism: A Sibling’s Perspective

We are honoring the Top 9 winners of our Student Open Letter Contest by publishing their entries. This one is by Leela Uppaluri, age 16.

By The Learning Network

This letter, by Leela Uppaluri, 16, of The Winsor School in Boston , is one of the Top 9 winners of The Learning Network’s Student Open Letter Contest, for which we received 8,065 entries. You can find the work of all the winners, as we publish them, here .

Dear Classmates,

You should know that I am not autistic. But growing up just 16 months younger than my autistic brother has given me a front-row seat to how this condition is viewed by many of you. In school, we are surrounded by values of education and inclusion, but these values don’t seem to translate to disability awareness.

Though only four years old, I remember like it was yesterday when my mom told me that my brother is autistic. How she whispered the word “autism” to me, as if she was shielding me from a four-letter word, hoping to protect me from classmates who might later mimic and bully my brother. In 6th grade I remember hearing many of you label autism a “disease.” A disease connotes something wrong with a person, something needing to be fixed. Unfortunately, these constructs outline how we have all grown up thinking about autism.

Fast forward to 9th grade — I have even heard some of you use the “r” slur or the words “moron” or “lame” jokingly. And I’ve also grown up in a world where when you don’t do so well on a math test one of you might joke “are you autistic?” Whenever I hear these insults, I come home angry. Angry because you use an important part of my brother’s identity, who he is, as a put-down. When I’ve told you that you are being ableist, you’ve called me “sensitive.” Though you speak naïvely, you devalue my brother and those like him when you use such language.

The truth is, one in 36 of us is diagnosed with autism. Moreover, people with disabilities are the largest minority group in the United States, and as new disability categories within neurodiversity emerge and grow, so does that percentage. Make no mistake — autism is in all of our classrooms, and we must move toward true acceptance now.

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Personality and Self-Insight in Individuals with Autism Spectrum Disorder

Roberta a. schriber.

Department of Psychology, University of California, Davis, Davis, CA, U.S.A

Richard W. Robins

Marjorie solomon.

University of California, Davis School of Medicine, Department of Psychiatry, MIND Institute, Imaging Research Center, Sacramento, CA, U.S.A

Autism spectrum disorder (ASD) involves widespread difficulties in social interaction, communication, and behavioral flexibility. Consequently, individuals with ASD are believed to exhibit a number of unique personality tendencies, including a lack of insight into them. However, surprisingly little research has examined these issues. Study 1 compared self-reports of Big Five personality traits in adults with ASD ( N =37) to those of typically developing (TD) adults ( N =42). Study 2 examined whether any observed personality differences replicated in children/adolescents with ASD ( N= 50) and TD controls ( N= 50) according to self- and parent reports. Study 2 also assessed level of self-insight in individuals with ASD relative to TD individuals by examining the degree to which self-reports converged with parent reports in terms of self-other agreement and self-enhancement (vs. self-diminishment) biases. Individuals with ASD were more Neurotic and less Extraverted, Agreeable, Conscientious, and Open to Experience. These personality differences replicated for (a) children, adolescents, and adults, (b) self- and parent reports, and (c) males and females. However, personality traits were far from perfect predictors of ASD vs. TD group membership, did not predict within-group variability in ASD symptom severity, and had differential links to maladjustment in the ASD and TD groups, suggesting that ASD represents more than just an extreme standing on trait dimensions. Finally, individuals with ASD had a tendency to self-enhance, and TD individuals, to self-diminish, but both groups showed comparable self-other agreement. Thus, individuals with ASD exhibit distinct personalities relative to TD individuals but may have a similar level of insight into them.

Imagine the child who perpetually sequesters himself from others due to social indifference or awkwardness. Or the one who, when venturing into a social interaction to express his fascination with Pokemon, is unable to interpret or act on the cues soon coming from his partner: Eyes dart around, an attempt to interject is issued, a glare, a sigh, a tapping foot, and, finally, the partner mentions needing to be somewhere else – and the child says he can tag along. Such a lack of attunement with and insight into others could easily foster atypical, even abrasive, personality characteristics in these children, who might not even know how they come across nor how to use that knowledge toward better ends. To the casual observer, they would seem socially aloof, avoidant, or unskilled; to one familiar with autism spectrum disorder (ASD), they would suggest the presence of that condition.

Autism was first described by Kanner (1943) in his study of eleven children with “autistic disturbances of affective contact” (p. 271), followed, independently, by Asperger (1944) , who reported on a similar syndrome in four children in Vienna. Comprising a clinical phenotype that is highly variable in its form and severity, ASD – including “classic” autism, high-functioning autism (HFA), Asperger's syndrome, and pervasive developmental disorder not otherwise specified (PDDNOS) – is a neurodevelopmental disorder characterized, for the purpose of diagnosis, by early emerging (1) impairment in reciprocal social interaction, (2) difficulty in verbal and nonverbal communication, and (3) restricted or stereotyped patterns of interests and behavior ( American Psychological Association, 2000 ). 1 Within this “triad of impairments” ( Rutter, 1968 ), social impairment has been considered the most debilitating and central to the disorder ( Fein et al., 1986 ; Rogers, 2000 ).

Although individuals with ASD have been found to be atypical across many domains of functioning, the unique characteristics of individuals with ASD as manifested in their basic personality traits have received little empirical attention. Moreover, although individuals with ASD are assumed to be ignorant of their peculiar characteristics and to lack self-insight more generally ( Frith & Happé, 1999 ; Raffman, 1999 ), autism has never been investigated as a moderator of accuracy in judging one's own personality (i.e., trait self-knowledge). Indeed, researchers seldom assess the self-views of individuals with ASD, let alone evaluate their accuracy relative to some criterion for what they actually are like. Understandably, most work on ASD emphasizes clinically relevant goals, such as refining diagnostic criteria or evaluating the efficacy of different treatments, rather than seeking a deeper look at the personality and self-evaluative processes that might underlie the observed deficits. Thus, the present research investigates two questions about individuals with ASD: (1) how do their personalities differ from those of TD individuals; and (2) do they actually lack insight into their personalities, as is generally assumed?

Do Individuals with Autism Have Unique Personalities?

Children and adults with ASD are described as reluctant to make changes to their routines, as anxiety-prone, and as socially aloof or averse ( Wing & Gould, 1979 ), with their tending to treat social communications with no greater – and often less – priority than they do asocial stimuli ( Mundy, Gwaltney, & Henderson, 2010 ). Even when an interest in social interaction exists, individuals with ASD may lack the requisite skills to make a social encounter successful ( Bauminger, Shulman, & Agam, 2003 ). The debilitating interpersonal impairments experienced by individuals with ASD are assumed to result from a neurocognitive impairment in the basic motivation and ability to understand people's thoughts, feelings, and behaviors – perhaps even their own ( Baron-Cohen, 2009 ; Chevallier et al., 2012 ; Perner et al., 1989 ; Hobson, 1993 ). Given the unique characteristics of individuals with ASD, it may be expected that their personality profile – that is, the distinct set of traits characterizing their typical patterns of thinking, feeling, and behaving – would be quite different from the modal personality profile of TD individuals.

Over the past few decades, individual differences in personality have increasingly been organized by researchers according to the Big Five model of personality ( John, Naumann, & Soto, 2008 ), with its dimensions having been linked to a wide range of real-world outcomes and psychological constructs ( John et al. 2008 ; Ozer & Benet-Martinez, 2006 ; Roberts, Kuncel, Shiner, Caspi, & Goldberg, 2008), including personality disorders and other forms of psychopathology ( Bastiaansen et al., 2011 ; Widiger & Smith, 2008 ), for which there has been emerging interest in shifting from categorical to dimensional models of psychiatric classification (e.g., Adam, 2013 ; Cuthbert & Insel, 2013 ; Krueger, Derringer, Markon, Watson, & Skodol, 2011 ; Widiger & Costa, 2012 ; Wright et al., in press ). In fact, clinical science is currently at a critical juncture as the latest version of the DSM includes an option for making diagnoses based, in part, on assessing clients' maladaptive trait standings ( Krueger et al., 2011 ; Widiger & Costa, 2012 ). With increasing integration of normal and pathological personality, using the Big Five framework for investigating personality in ASD can help us understand personality more generally. We might ask, for example, how pervasively is personality altered in ASD, a disorder that has social impairment at its core? Are all traits affected? And how well is the ASD phenotype explained by describing personality? Based on what is known about the cognitive, affective, and behavioral features of ASD and in light of previous research, we can make several predictions about the Big Five traits of individuals with ASD.

First, we predict that individuals with ASD will be lower in Extraversion, given their difficulties with social interaction and communication and their tendency to avoid social contact rather than pursue it as rewarding ( Mundy et al., 2010 ; Volkmar & Klin, 2000 ). Second, we predict that individuals with ASD will be lower in Agreeableness due to their reduced capacity to comprehend interpersonal cues; to relate to, empathize with, and feel compassion for others; and to engage in emotionally sensitive, reciprocal social responding ( Dawson et al., 2004 ; Hobson, Lee, & Hobson, 2007 ; Mundy et al., 2010 ). Third, we predict that individuals with ASD will be lower in Conscientiousness, given their deficits in attentional shifting, working memory, inhibitory control, and other aspects of self-regulation ( Hill, 2004 ; Solomon et al., 2008 ; Solomon et al., 2009 ). Indeed, the obsessional focus in ASD on narrow domains of interest might compromise more general aspects of Conscientiousness, such as the tendency to be organized, planful, and task-focused. Fourth, we predict individuals with ASD will be higher in Neuroticism, given their tendency to experience elevated levels of anxiety, anger, and emotional lability; to evidence poor emotion regulation; to develop internalizing and externalizing problems; and to exhibit pervasive social problems that might disrupt social support networks and contribute to feelings of alienation and loneliness ( Capps, Kasari, Yirmiva, & Sigman, 1993 ; White, Oswald, Ollendick, & Scahill, 2009 ). Finally, we do not make a prediction about Openness to Experience. Although the behavioral rigidity and novelty-aversion of individuals with ASD imply lower Openness, the unique forms of creativity and hobbies that many individuals with ASD exhibit make the link between ASD and Openness tenuous.

Consistent with our predictions, the two published studies on Big Five traits in ASD — one conducted in Belgium with parents reporting on their 6-14 year-old children ( De Pauw, Mervielde, Van Leeuwen, & De Clercq, 2011 ) and the other conducted with adult outpatients screened for Asperger's syndrome in Japan ( Kanai et al., 2011 ) — found lower Extraversion, Agreeableness, Conscientiousness, and higher Neuroticism, in ASD versus TD individuals. De Pauw et al. also found lower levels of Openness in ASD relative to TD individuals, whereas Kanai et al. found no group differences.

Notably, both studies relied on a single method to assess personality. De Pauw et al. used parent reports on the Hierarchical Personality Inventory for Children (HiPiC; Mervielde & De Fruyt, 2002 ), which was in fact originally constructed from parents' open-ended descriptions of their children, and Kanai et al. used self-reports on a Japanese translation of the NEO Personality Inventory-Revised (NEO-PI-R; Costa & McCrae, 1992 ). Thus, the effects in each study may have been biased by response styles and other methodological artifacts deriving from the limited perspective a single class of perceivers has on their targets ( Paulhus & Vazire, 2007 ; Vazire, 2010 ). For example, it might be unsurprising that Extraversion was the personality dimension that showed the largest group difference in De Pauw et al.'s study based on parent reports (i.e., an “outsider” perspective), whereas Neuroticism showed the largest group difference in Kanai et al.'s study based on self-reports (i.e., an “insider” perspective) ( John & Robins, 1993 ; Vazire, 2010 ). Moreover, Kanai et al.'s exclusive reliance on self-reports raises additional concerns: Given the abnormalities in language and social understanding in individuals with ASD, these individuals may interpret personality test items in idiosyncratic ways or may have particularly poor insight into their own personalities. To address these issues, we use both self- and parent reports of personality in children and adolescents with ASD vs. TD controls, allowing us to replicate the findings across assessment methods.

Additionally, we assessed personality in ASD children and adolescents as well as in adults using the same well-validated measure of the Big Five dimensions. Although the five-factor structure of the HiPiC used by De Pauw et al. (2011) is comparable to the Big Five, it is not perfectly commensurate with it ( Mervielde, De Clercq, De Fruyt, & Van Leeuwen, 2005 ). HiPiC Benevolence, for example, despite being analogous to Agreeableness, includes a Dominance facet that is more frequently associated with Extraversion and an Irritability facet that is more aligned with Neuroticism ( Mervielde et al., 2005 ). Thus, the present research uses the Big Five Inventory (BFI; John, Naumann, & Soto, 2008 ) to examine relations between autism and the core components of the Big Five. Using the same instrument across two age cohorts also allowed us to address an important question about the personality traits associated with autism: Are the personality differences observed in ASD and TD children evident in adults, or do ASD children seem to “grow out” of their potentially problematic personality tendencies?

Moreover, because ASD does not present identically with regard to its detection and severity across cultural, ethnic, racial, regional, and socioeconomic contexts (e.g., Matson et al., 2012 ; Norbury & Sparks, 2013 ), differences driven, in part, by extensive variability in norms for social behavior and how autism itself is conceptualized and diagnosed, replication in a North American sample would support the generalizability of the previously observed personality differences. For example, higher levels of ASD symptom severity are generally reported in the United States compared to most other countries ( Sipes et al., 2012 ). Perhaps consistent with this, the “high symptom severity” ASD group in De Pauw et al. (2011) was defined using a cut-off point on the Social Communication Questionnaire (SCQ; Rutter et al. 2003 ) that in the U.S. would be considered the minimum level for making an ASD diagnosis, and the “low symptom severity” group would not even receive an ASD diagnosis. Extending research on personality in ASD to the U.S. would tell us something about the cross-cultural generality of links between personality and ASD and thus help identify which personality traits are most clinically relevant to the disorder.

Aside from these methodological extensions, we also sought to move beyond simply describing ASD vs. TD differences in personality and ask how accurately we can predict whether or not an individual has an ASD based solely on their Big Five traits. Would knowing that a person is unusually introverted, disagreeable, disorganized, emotionally volatile, and restricted in their interests and behavior be sufficient to correctly classify him or her as having a clinical condition? Which traits would be most “diagnostic”? To address these questions, the present research uses discriminant function analysis (DFA), by which group membership can be predicted from all Big Five traits simultaneously and their relative influence assessed. DFA and other weighted classification techniques have been used with remarkable success (e.g., 95% classification accuracy) to predict ASD diagnosis in individuals as young as 2-4 years old when predictors are relatively low-level biological factors such as whole and regional brain volumes ( Akshoomoff et al., 2004 ) and pairs of electroencephalography (EEG) or magnetoenchephalography (MEG) signals coming from different areas of the brain ( Domínguez, Velázquez, Galán, 2013 ; Duffy & Als, 2012 ). The question, then, is how well can we predict ASD diagnosis using the Big Five framework, the most comprehensive and parsimonious framework available for summarizing phenotypic tendencies in thoughts, feelings, and behaviors?

Such an analysis capitalizes on the possibility that personality traits cross the threshold from normalcy to psychopathology and bears on the dimensional/categorical issue that has become a focus (and often source of controversy) in personality and clinical psychology – whether psychological variation is best described in terms of degrees vs. kinds (cf. Meehl, 1992 ). Some researchers have argued that autism is a dysfunctional extreme of a “broader autism phenotype” that is normally distributed in the general population ( Dawson et al., 2002 ; Piven, Palmer, Jacobi, Childress, & Arndt, 1997 ). However, a meta-analysis by Haslam, Holland, and Kuppens (2012) suggests that ASD may be one of the only syndromes of maladjustment to be best characterized as categorical, making an analysis of ASD within the dimensional framework of the Big Five potentially informative.

One step towards better understanding trait processes in ASD is to examine how traits relate to the phenotypic features of the disorder in individuals with and without ASD. If ASD is truly a categorical variable – that is, if it “carves nature at its joints,” as Meehl put it – then we might expect personality differences to predict between but not within-group variability in autism symptom severity. In contrast, if autism comprises a continuum and the diagnostic cut-off used to categorize individuals as having vs. not having ASD is largely arbitrary – creating a dichotomous category out of a continuous phenotype – then we would expect personality traits to predict within- as well as between-group differences in symptom severity. Autism provides a unique opportunity for studying such trait-pathology links given the tremendous diversity in its presentation; while one individual with ASD may be “socially aloof, completely mute, and locked into repetitive rocking and hand flapping,” another may be “inappropriately over-friendly, highly verbal but incapable of distinguishing jokes from lies, and fascinated by abstruse astronomical facts” ( Happé & Charlton, 2012 ; p. 70). A related approach is to evaluate whether diagnostic status (i.e., having or not having ASD) moderates the relationship between traits and more general indices of maladjustment, such as externalizing and internalizing. If similar associations are found in the ASD and TD groups, then these groups, even if they differ on trait levels, could still be construed to lie on the same continuum of functioning.

With both approaches in mind, we examined how personality variation maps onto pathological variation by analyzing the degree to which the Big Five traits predict ASD symptom severity and general maladjustment (internalizing and externalizing symptoms) within the ASD and TD samples. Kanai et al. and De Pauw et al. correlated Big Five traits with ASD symptoms and/or general maladjustment, finding differential associations across the Big Five, but the same informant provided all relevant information. In contrast, the present research examines associations of parent- and self-reported Big Five traits with parent reports of ASD symptoms and maladjustment, and with clinician reports of ASD symptoms using the ADOS-G, a behavior-based diagnostic tool that has been found to be more sensitive and stable over time than parent reports ( Lord, 2000 ). As such, the present research is the first to examine whether and the degree to which the Big Five traits predict clinical observation of ASD-related behaviors .

Do Individuals with Autism Lack Self-Insight?

Frith and Happé (1999) asserted that autism is “a devastating disorder because it disrupts not only understanding of others and their social relationships, but also understanding of self” (p. 19). Similarly, Zahavi (2010) noted that although autism is primarily associated with social deficits, “there is of course a long standing tradition – reflected in the very term ‘autism’ from the Greek term for self ‘autos’ – for also considering it as a disorder of self and self-understanding” (p. 547). To the extent that individuals with ASD are characterized by poor self-understanding, they should evidence inaccurate self-views, but researchers seldom assesses the self-views of individuals with ASD. Nevertheless, theory and research on autism suggest that individuals with ASD may have poor self-insight due to deficiencies in three main capacities: (1) the capacity to introspect on their internal thoughts and feelings; (2) the capacity to use concepts and language crucial for building self-knowledge; and/or (3) the capacity to engage in social interactions that advance self-knowledge through the opportunity to internalize others' views of them.

First, although Theory-of-Mind deficits are well-known in ASD (cf. Baron-Cohen, Leslie, & Frith, 1985; Yirmiya, Erel, Shaked, & Solomonica-Levi, 1998 ), individuals with ASD are also purported to have deficits in basic self-awareness and introspective capacity – aspects of psychological functioning without which self-insight should be difficult to attain ( Morin, 2011 ; Trapnell & Campbell, 1999 ). Several researchers ( Baron-Cohen, 2003 ; Frith & Happé, 1999 ; Lombardo & Baron-Cohen, 2011 ) posit that the neurocognitive mechanism that is impaired in ASD enables the attribution of mental states not only to others but also to oneself . Thus, to the extent that individuals with ASD have trouble grasping or gleaning others' thoughts, feelings, intentions, motivations, beliefs, attitudes, and so on, they are thought to lack immediate rapport with their own, even needing to infer them from their own behavior in the same rigid, rule-based fashion they apply to others. This impairment, termed “mindblindness” ( Baron-Cohen, 1995 ; Carruthers, 1996 ), has been inferred from such findings as that high-functioning individuals with ASD do not report on second-order thoughts when asked about their mental contents, instead tending to convey visual imagery mostly related to first-order experience ( Frith & Happé, 1999 ), and that brain regions related to introspection and mentalizing, which overlap ( Lombardo et al., 2010 ), either function abnormally in individuals with ASD ( Assaf et al., 2010 ; Di Martino et al., 2009 ) or give rise, when damaged, to characteristics consistent with the disorder ( Umeda, Mimura, & Kato, 2010 ).

The second, less extreme, perspective suggests that individuals with ASD do not lack introspective capacity but the ability to use meta-representational concepts needed for understanding and organizing their introspections ( Leslie & Thaiss, 1992 ; Perner, 1991 ). This deficit – called “conceptual incompetence” by Raffman (1999) – should impair the ability of individuals with ASD to form conceptually complex and elaborated representations of their personal attributes, let alone accurate ones. That is, if individuals with ASD are unable to crystallize their self-reflections, they should be less able to develop, over time, the richly connected semantic and experiential associations that contribute to self-knowledge and its report. Consistent with this possibility, individuals with ASD are often characterized by alexithymia – literally meaning “having no words for emotions” – and have difficulty describing their emotional experience despite showing typical emotional reactions in other respects ( Ben Shalom et al., 2006 ; Berthoz & Hill, 2005 ).

Finally, individuals with ASD may be unwilling or unable to engage in the type of social interaction that promotes the attainment of accurate self-knowledge. As Hobson (2002) suggested, developing self-knowledge depends on the ability to adopt another's attitude towards oneself, itself mediated by insight into another's reactions to oneself during interpersonal exchanges. This view, complemented by impaired Theory-of-Mind deficits in ASD, aligns with the symbolic interactionist idea of the “looking-glass self” ( Cooley, 1902 ; Mead, 1934 ; Schrauger & Schoeneman, 1979 ), whereby people come to know themselves through the eyes of others and come to internalize those views. Given that individuals with ASD tend to shy away from social contact altogether and often fail to understand others' social cues, they may lack sufficient means for accruing knowledge about themselves through the knowledge that others mirror about them.

So far, we have outlined ways in which self-insight might be impaired in autism according to theories of autism. However, several lines of theory and research from the literature on personality judgment also inform our predictions. Funder (e.g., 1995 , 1999) organized moderators of accuracy in personality perception into four main categories, which he labeled (1) good judge, (2) good target, (3) good trait, and (4) good information. ASD complicates features related to each of these. We might expect individuals with ASD to be poor judges of personality – including their own – given their pervasive deficits in social-cognitive processing. We might also expect them to be poor targets – including their own – because of the very nature of the personality to be judged. They appear to be neither extraverted nor well-adjusted, both qualities of targets who are accurately judged, with extraversion entailing expressing a wealth of information about oneself, and well-adjustment ensuring such information is coherent, consistent across contexts, and easy to decode ( Colvin, 1993 ; Funder, 1995 ). With regard to traits, although traits that are high in observability and evaluativeness are typically the most difficult for the self to judge accurately ( John & Robins, 1993 ; Vazire, 2010 ), ASD may (1) confer equal disadvantage for judging external vs. internal traits due to the aforementioned possibility of deficient self-consciousness, yet also (2) inoculate individuals from biases coming from the need to be favorably evaluated by the self or other, given their lack of social motivation and concern about reputation ( Izuma et al., 2011 ). The net effect would be poor self-insight and possibly even less differentiation across traits regarding those for which ASD individuals have more or less self-knowledge. Finally, ASD could hinder good information. For instance, the social aversion and behavioral inflexibility of individuals with ASD would limit the situations in which they can express and monitor their personalities.

It is possible to go further with these presumed shortcomings when one takes into account the six unique two-way interactions among the moderating factors ( Funder, 1995 ). Consider autism and judging one's own Conscientiousness. The Judge × Trait interaction denotes Expertise, but individuals with ASD, who have poor executive functioning, are unlikely to be finely attuned to or invested in judging the myriad criteria relevant to Conscientiousness – unlike, say, an emerging entrepreneur whose life pivots around persistence, organization, efficiency, meeting goals, and keeping abreast of these qualities in other people. Regarding Trait × Information, which deals with Diagnosticity, certain attributes in ASD, like preferring work that is routine, paying attention to detail, and being rule-abiding, might seem germane to Conscientiousness when, in actuality, they take on vastly different meanings in the context of the disorder. Altogether, then, a range of perspectives suggests that individuals with ASD will show worse self-insight than TD individuals. Despite this rich array of relevant theory, there is a dearth of empirical research on the topic.

Luckily, the literature on personality judgment also gives us the methodological tools we need to address the issue of self-insight in ASD. The most common approach to evaluating accuracy of self-perception is to compare self-reports of personality with those provided by knowledgeable informants. In the present research, we use parent reports of Big Five traits as a criterion for evaluating the accuracy of ASD and TD youths' self-reports of their Big Five traits. Although parent reports have their own limitations (e.g., parents may provide overly rosy descriptions of their children), they do provide one external source of information that can be used to evaluate the veracity of children's self-views. Once collected, self and informant reports can be compared in terms of relative agreement (i.e., self-informant correlations) and directional deviations (i.e., self-informant discrepancies), which provide somewhat different information ( Schriber & Robins, 2012 ).

With regard to relative agreement, both variable- and person-centered approaches are available ( Furr, 2010 ). A variable-centered approach assesses self-other agreement by computing, across persons, a self-informant correlation for each trait. This measure reflects the degree to which self and informants agree about the rank-ordering of targets on each trait. In contrast, a person-centered approach assesses self-other agreement separately for each person by computing, across the set of traits, a correlation between the trait profiles rated by self and informant. This measure of overall profile agreement reflects the degree to which self and informant agree about the rank-ordering of traits within an individual (i.e., which traits are relatively descriptive, or non-descriptive, of the target). However, high profile agreement can sometimes be achieved when a judge rates a target as if she were simply a typical member of her group ( Furr, 2010 ), so this index is further decomposed into distinctive agreement , reflecting the degree to which a target and judge agree about the unique aspects of a target's trait profile relative to the group average, and two indices of normative agreement that respectively gauge (1) how much a target's self-rated profile converges with the average target -rated profile, and (2) how much an informant -rated profile converges with the average informant -rated profile. By simultaneously examining distinctive and normative agreement, we should be able to directly assess the extent to which ASD and TD individuals agree with informants regarding their profile of unique, differentiating traits as opposed to simply the profile of traits likely to define them based on group membership. We predict individuals with ASD will show worse self-other agreement than TD individuals according to both variable- and person-centered approaches.

With regard to directional deviations, although high self-informant correlations, both variable- and person-centered, suggest greater self-insight, neither provides information about systematic biases. That is, high self-informant correlations can be obtained even when self-reports are systematically more positive (or negative) than informant reports. Thus, to complement self-informant correlations, self-reports can also be compared to other-reports in terms of directional deviations, whereby positive discrepancies for favorable attributes indicate self-enhancement, and negative discrepancies, self-diminishment. Based on research showing that individuals with ASD report their psychiatric symptoms to be less severe than they actually are ( Koning et al., 2001 ; Johnson et al., 2009 ), we predict that individuals with ASD will show a positivity bias relative to parent reports of their personality. Altogether, these various measures of agreement and bias provide a comprehensive test of the degree to which individuals with ASD exhibit poor self-insight relative to TD individuals.

The Present Research

The present research had two broad aims: (1) to investigate personality differences between ASD and TD individuals, and (2) to investigate whether ASD individuals have less insight into their personalities than do TD individuals. In Study 1, we examined group differences in self-reported personality traits between adults with and without ASD, then examined the degree to which personality traits (1) predicted ASD vs. TD group membership and (2) explained variability within the ASD group in clinician-rated ASD symptoms. Study 2 extended Study 1 in three main ways. First, we examined personality-ASD relations in a sample of children and adolescents rather than adults. Second, we used both self- and parent-reports of the Big Five, allowing us to rule out the possibility that self-report response-style differences might account for the ASD vs. TD differences in personality. Third, we examined the personality correlates of within-group variability in general maladjustment (internalizing, externalizing) as well as in ASD symptom severity, and we did so in the TD group as well as in the ASD group. Finally, Study 2 also addressed the question of self-insight by looking at the degree to which the self-reports of children and adolescents with and without ASD converge with parent reports in terms of accuracy (self-informant correlations from variable- and person-centered approaches) and self-enhancement bias (positive discrepancies between self and informant reports).

The majority of research on ASD has been limited to children and adolescents, despite understanding of autism as a developmental disorder and despite calls for researchers to examine ASD in adulthood ( Borthwick, 2012 ). Thus, we first examined how the personality traits of adults diagnosed with ASD differ from the personality traits of an age- and gender-matched sample of TD individuals. It is possible that individuals with ASD develop more positive personality characteristics as they learn skills and strategies that help them adapt to the social world ( Seltzer, Shattuck, Abbeduto, & Greenberg, 2004 ), perhaps especially if they have already received the benefit of an earlier diagnosis ( Makrygianni & Reed, 2010 ). Investigating personality in adults with ASD would shed light on the implications of autism for adulthood, when individuals are faced with the developmental task of learning to support themselves in order to live independently and are establishing nurturing, meaningful relationships. As such, it could also help “tailor treatments, interventions, and services and supports to the evolving needs of adolescents transitioning to adulthood and adults across the spectrum with ASD” ( IACC, 2010 , p. 39).

To assess the robustness of any observed differences, we examined whether they (a) hold after controlling for group differences in IQ, and (b) are moderated by sex. The extreme male-brain theory of autism ( Baron-Cohen, 2002 ) raises the possibility that TD individuals will show larger gender differences in personality relative to individuals with ASD, as the latter group might be characterized by more uniformly “male” features.

Participants

Participants were 37 (22% female) individuals with ASD ( M age = 22.2 years, SD = 5.5; range = 18 to 40 years) and 42 (20% female) TD individuals ( M age = 23.2 years, SD = 4.2; range = 18 to 34 years), all with Wechsler Full Scale IQ ≥ 79 (WASI; Wechsler, 1999 ). Of the ASD sample, 29% were diagnosed with high-functioning autism (HFA), 57% with Asperger's syndrome, and 14% with PDDNOS, according to criteria set by the DSM-IV-TR ( American Psychiatric Association, 2000 ), assessment via the Autism Diagnostic Observation Schedule-Generic ( Lord et al., 2000 ), a prior community diagnosis, and a psychosocial interview. We included individuals with varied diagnoses because it is difficult to reliably distinguish among these disorders, and there is no empirical distinction in symptomatology or outcome by the age of 8 years (the age of the youngest participants in the current research; e.g., Ozonoff & Griffith, 2000 ). Individuals with diagnoses of autism with known genetic etiologies and psychopathology were excluded.

Participants were recruited from local physicians, psychologists, speech and language pathologists, occupational therapists, advocacy groups, regional centers, ASD support groups, and the M.I.N.D. Institute's Subject Tracking System, which includes children and adults with developmental disorders as well as TD children and adults who serve as control samples. TD participants could have no current or history of psychiatric disorders, including neurodevelopmental disorders, other than learning disabilities.

The ASD ( M = 108, SD = 16.1; range = 79 to 140) and TD groups ( M = 116, SD = 12.1; range = 87 to 136) differed in Full Scale IQ scores, t = 2.3, p < .05. Given this difference, we will examine whether any observed personality differences between the ASD and TD groups hold after controlling for IQ.

Autism Diagnostic Observation Schedule–Generic (ADOS-G; Lord et al., 2000 )

To confirm diagnosis and to provide a relatively objective, behavior-based measure of current ASD symptoms, participants with ASD were administered module 3 or 4 (based on language ability) of the ADOS-G by a trained clinician. The ADOS-G is a semistructured protocol that offers standardized observation of social interaction, communication, play, and imaginative use of materials. Planned situations called “presses” are created which allow a range of spontaneous behavior to be elicited. Participants are rated based on their behavioral responses and scored for reciprocal social behavior, communication, and repetitive and stereotyped interests and behavior. An algorithm score that combines the reciprocal social interaction and communication domains is the basis for diagnostic classification. Lord et al. (2000) showed mean inter-rater agreement was 88% across all items for modules 3 and 4. Scores ranged from 7 to 22 with a mean of 11.6 and standard deviation of 3.6.

Wechsler Abbreviated Scale of Intelligence (WASI; Wechsler, 1999 )

The four-subtest version of the WASI was used to provide a short and reliable means of assessing intelligence. It consists of four subtests (Vocabulary, Block Design, Similarities, and Matrix Reasoning) and produces Verbal (VIQ), Performance (PIQ), and Full Scale IQ (FSIQ) scores. These scales provide standard scores with a mean of 100 and a standard deviation of 15. The WASI is nationally standardized and has strong psychometric properties. The test-retest reliability of the IQ scales ranges from .88 to .93. Participants were required to have FSIQ scores above 75.

Big Five Personality Traits (BFI; John et al., 2008 )

The Big Five personality dimensions were assessed using the 44-item BFI, which shows high convergent validity with other self-report measures of the Big Five dimensions ( John et al., 2008 ). Participants rated items on a 5-point Likert scale ranging from 1 “disagree strongly” to 5 “agree strongly.” In the present sample, alpha reliabilities for Extraversion, Agreeableness, Conscientiousness, Neuroticism and Openness to Experience, respectively, were, in the ASD sample, .85, .78, .79, .85, and .72, and, in the TD sample, .81, .54, .72, .83, and .84. The low alpha for Agreeableness in the TD group was unexpected and may have been driven, in part, by a ceiling effect coupled with low variances on some items, but the source is ultimately unclear. At the scale level, there were no significant group differences in variance for any of the Big Five, except that ASD adults, as compared to the TD adults, had significantly more variability in their Extraversion ratings, based on Levene's test for homogeneity of variance, F (1, 77) = 5.24, p < .05.

Results and Discussion

Do asd and td adults have different personality trait levels.

We first examined whether ASD and TD individuals showed different personality trait levels. Compared to TD adults, ASD adults tended to be more Neurotic and less Extraverted, Agreeable, Conscientious, and Open to Experience (see Table 1 ). These personality differences were generally “large” in magnitude according to Cohen's (1988) rules of thumb, ranging from a standardized mean difference of .55 for Openness to a difference of .90 for Conscientiousness, with a median d of .84. 2 All effects remained significant when IQ was entered as a covariate. To test whether these personality differences varied as a function of sex, we conducted a series of 2-way ANOVAs with Group (ASD vs. TD) and Sex (Male vs. Female) as between-subjects factors. The Group × Sex interaction was nonsignificant for all Big Five dimensions, indicating that the personality differences between ASD and TD adults were similar for men and women. 3

Note . n = 37 ASD and n = 42 TD. ASD = Autism Spectrum Disorder; TD = Typically Developing.

How well do personality traits predict ASD vs. TD group membership?

We next examined how well personality traits alone could be used to predict whether individuals did or did not have an ASD diagnosis – that is, whether they belonged to the ASD or TD group. A discriminant function analysis was performed using the Big Five traits as predictors of ASD vs. TD group membership. The discriminant function was significant (Wilks' lambda = .697, χ 2 (5) = 26.49, p < .001), with a canonical correlation of .55, indicating that the model accounted for 30.3% of the between-group variance. Results suggest that Neuroticism, with a standardized discriminant function coefficient of −.38, was the best predictor of group membership, followed by Agreeableness, .37; Conscientiousness, .37; Openness, .26; and Extraversion, .23. Overall, the model correctly classified individuals as ASD vs. TD 70% of the time. These results suggest that personality predicts diagnostic status reasonably well, but clearly more goes into differentiating the ASD and TD groups than personality.

Do personality traits predict within-group variability in ASD symptom severity in the ASD group?

The previous sets of analyses investigated the degree to which personality traits are associated with the between-group diagnosis of ASD vs. TD. Here, we explore whether personality traits predict within-group variability in ASD symptom severity based on behavioral observation in individuals diagnosed with ASD. In other words, do individuals with more severe ASD symptoms have different personality traits than individuals with milder ASD symptoms? Table 2 shows correlations between adults' self-rated Big Five traits and clinician-rated ASD symptomatology using the ADOS. A multiple regression analysis simultaneously entering all Big Five traits as predictors of total ADOS score was not significant ( R 2 = .23, F = 1.825, ns ). Only Neuroticism was significantly related to ASD symptom severity, r = −.37, but higher levels of Neuroticism predicted less , not more, severe symptoms. This counterintuitive result should be treated with caution, however, because it became nonsignificant when we eliminated the three outliers with standardized residuals greater than two standard deviations from the regression line, indicating that the effect is driven by a relatively small number of cases. Moreover, as will be seen in Study 2, the corresponding correlation is not significant in the child/adolescent sample. Overall, the results suggest that personality does not significantly contribute to within-group variability in ASD symptomatology in individuals diagnosed with ASD, a conclusion that is further bolstered by the findings to be reported in Study 2.

Note . n = 37 for ASD adult self-report (Study 1); n = 50 for ASD and 50 for TD for child self-report, and n = 50 for ASD and 49 for TD for parent report (Study 2). ASD = Autism Spectrum Disorder; TD = Typically Developing. ADOS-G = Autism Diagnostic Observation Schedule-Generic ( Lord et al., 2000 ); SCQ = Social Communication Questionnaire ( Rutter et al., 2003 ).

Taken together, the findings from Study 1 support predictions based on previous theory and research, and suggest that personality differences between ASD and TD individuals are evident in adulthood. However, findings indicate that personality, while successful at distinguishing between diagnostic groups, generally does not significantly distinguish between individuals with ASD who are experiencing more or less severe symptoms.

Study 2 examined whether the personality differences observed in Study 1 replicate (1) in a sample of children and adolescents with ASD as well as (2) for self and parent reports of personality. Study 2 also continued to explore how personality relates to maladjustment. We again examined how traits relate to variability of clinician-rated ASD symptoms in individuals diagnosed with ASD. In addition, because the possibility of a broader autism phenotype that is normally distributed in the general population encourages testing for, and even expecting, similar trait-pathology links in the ASD and TD samples, we examined how Big Five traits relate to within-group variability of ASD symptoms in both groups using parental ratings of ASD symptoms. Finally, we extended these trait-maladjustment analyses to looking at how traits relate to more general indices of maladjustment (i.e., internalizing and externalizing) as rated in both groups by parents.

The other purpose of Study 2 was to examine whether individuals with ASD have insight into their personality traits. Replication of results across self- and parent reports would hint at “yes”, but we can more directly use these data to test this enduring issue in ASD using parent reports as a criterion measure for evaluating accuracy and bias in the self-perceptions of individuals with and without ASD. Based on both the autism and personality judgment literatures, we expected individuals with ASD to show less self-insight, both in terms of self-informant agreement and self-enhancement.

Participants were 50 (58% female) individuals with ASD ( M age = 12.1 years, SD = 3.4, range = 8 to 18) and 50 (60% female) TD individuals ( M age = 12.0, SD = 3.0, range = 8 to 18), all with FSIQ ≥ 75 (WASI; Wechsler, 1999 ). The recruitment strategy and inclusion and exclusion criteria were the same as in Study 1. Of the ASD sample, 56% were diagnosed with HFA, 24% with Asperger's syndrome, and 20% with PDDNOS, according to criteria set by the DSM-IV-TR, using the ADOS-G, and a score above 15 on the Social Communication Questionnaire (SCQ; Rutter, Bailey, & Lord, 2003 ). The ASD ( M s = 104, SD = 16.3, range = 75 to 145) and TD groups ( M = 117, SD = 12.9, range = 88 to 139) differed in FSIQ scores, t = 4.2 , p < .01. Given this difference, we will examine whether any observed personality differences between the ASD and TD groups hold after controlling for IQ. Also, one unique feature of the design in this study's design was the approximately equal proportion of males to females in the ASD sample, rather than the 4:1 ratio typically seen in the ASD population ( Fombonne, 2003 ). This provided us with more power for testing whether gender moderated any of the observed differences in personality.

As in Study 1, the WASI was used to assess intelligence, the ADOS-G was used to assess ASD-related behaviors, and the BFI was used to assess the Big Five personality dimensions. Similar to the adult sample, ADOS-G scores ranged from 7 to 22 with a mean of 10.7 and standard deviation of 3.5. The BFI has been validated for use by children as young as 10 ( Soto et al., 2008 ). Both participants and their parents rated the BFI items on a 5-point Likert scale ranging from 1 “disagree strongly” to 5 “agree strongly.” The parent reports were provided by mothers (85%), fathers (12%), grandmothers (1%), brothers (1%), and sisters (1%). One participant from the TD sample was missing a parent report and thus could not be included in analyses on self-other agreement and directional deviations. In the present sample, alpha reliabilities for child self-reports in the ASD and TD samples, respectively, were .44 and .84 for Extraversion, .72 and .77 for Agreeableness, .63 and .74 for Conscientiousness, .67 and .62 for Neuroticism, and .63 and .67 for Openness to Experience, indicating comparable reliability in the two samples except for Extraversion. 4 For parent reports, alpha reliabilities in the ASD and TD samples, respectively, were .88 and .86 for Extraversion, .89 and .76 for Agreeableness, .89 and .87 for Conscientiousness, .87 and .82 for Neuroticism, and .82 and .78 for Openness to Experience. Child self-reports of Extraversion had significantly less variance in the ASD vs. TD group, F (1, 98) = 5.70, p < .05. In contrast, parent reports in the ASD group showed significantly more variance for Extraversion, F (1, 98) = 7.03, p < .01, Agreeableness, F (1, 98) = 30.34, p < .001, and Openness, F (1, 98) = 5.75, p < .05.

Social Communication Questionnaire (SCQ; Rutter et al., 2003 )

One of the participant's parents completed the SCQ, a 40-item questionnaire to evaluate communication and social skills. It contains parallel questions to those on the ADI-R ( Lord, Rutter, & LeCouteur, 1994 ), the gold standard parent-report diagnostic measure, but in a briefer format. Berument, Rutter, Lord, Pickles, and Bailey (1999) reported that a cutoff of 15 gave sensitivity of .96 and specificity of .80 for autism vs. other diagnoses. Thus, a cutoff of 15 was used.

Behavior Assessment System for Children, Second Edition (BASC-2; Reynolds & Kamphaus, 2004 )

Internalizing and externalizing problems were assessed by parent report on the BASC-2. The BASC-2 has been used to evaluate problem behaviors in individuals ranging from age 2 to 25 years, and has acceptable levels of test-retest (.76 to .84) and alpha reliability (.80 to .87). Internalizing was computed as a composite of the Anxiety, Depression, and Somatization scales; externalizing was computed as a composite of the Aggression, Hyperactivity, and Conduct Problems scales.

Do ASD and TD children and adolescents have different personality trait levels?

Consistent with previous research and what we observed in the adult sample in Study 1, ASD children and adolescents tended to be more Neurotic and less Extraverted, Agreeable, Conscientious, and Open to Experience than TD children and adolescents (see Table 3 ). The effect sizes were “moderate” to “large” in magnitude, ranging from .37 for Openness in child self-reports to 1.84 for Neuroticism in parent reports; Neuroticism also showed the largest group difference in child self-reports. All of the personality differences replicated for self and parent reports, except that the difference in Openness between ASD and TD children did not hold in self-reports. The effect sizes were larger for parent reports (median d = 1.19) than for self-reports (median d = .48).

Note . For child self-report, n = 50 ASD and n = 50 TD; for parent report, n = 50 ASD and n = 49 TD. ASD = Autism Spectrum Disorder; TD = Typically Developing.

To test whether the personality differences varied as a function of sex, we conducted a series of 2-way ANOVAs with Group (ASD vs. TD) and Sex (male vs. female) as between-subjects factors predicting self and parent reports of each Big Five dimension. In all 10 analyses, the Group × Sex interaction was nonsignificant, indicating that the personality differences between ASD and TD children were similar for boys and girls.

Finally, we tested whether these personality differences held after controlling for IQ. All of the effects remained significant when IQ was entered as a covariate, except that the group difference in self-reported Conscientiousness became marginally significant, p < .10.

To examine how well personality traits predict presence or absence of ASD diagnosis (i.e., ASD vs. TD group membership), discriminant function analyses were performed separately for child self-reports and parent reports using the Big Five traits as predictors. For both sets of reporters, the discriminant function was significant (in children: Wilks' lambda = .827, χ 2 (5) = 17.90, p < .01, with a canonical correlation of .42; in parents: Wilks' lambda = .484, χ 2 (5) = 68.56, p < .01, with a canonical correlation of .72). Results suggest that for each set of reporters, Neuroticism was the best predictor of group membership. Standardized discriminant function coefficients for each trait were, for child self-reports: Neuroticism, −.61; Openness, .34; Extraversion, .31; Agreeableness, .25, and Conscientiousness, .08; and, for parent reports: Neuroticism, −.64; Conscientiousness, .30; Openness, .24; Agreeableness, .13; and Extraversion, .07. For child self-reports, the model correctly predicted 69% of the cases. For parent reports, the model correctly predicted 83% of the cases. Thus, as with the DFA in the adult sample, results suggest that diagnostic status is somewhat, but far from entirely, explained by Big Five trait levels.

Do personality traits predict within-group variability in ASD symptom severity in the ASD and TD groups?

As in Study 1, we investigated how Big Five traits relate to ASD symptoms within the ASD sample by examining correlations of self- and parent-reported Big Five traits with clinician-reported ASD symptoms on the behavior-based ADOS (see Table 2 ). No personality traits for either set of reporters were significantly related to total ADOS score. For children and parents, respectively, a multiple regression model simultaneously entering all Big Five traits as predictors of total ADOS score was not significant (for children: R 2 = .08, F = .772, ns ; for parents: R 2 = .04, F = .414, ns ). Thus, regardless of the reporter of personality, personality traits did not predict individual differences in observed ASD symptomatology within a group of children and adolescents diagnosed with ASD.

We were able to further explore this question using a second measure of autism symptom severity, the parent-reported SCQ, which was assessed in the TD sample as well as in the ASD sample. To avoid problems with shared method variance, we focus here on the findings for child-reported personality traits. As Table 2 shows, none of the Big Five traits showed significant correlations with SCQ symptom severity in either the ASD or TD groups, replicating the results obtained for the ADOS and extending the findings from Study 2.

Which personality traits are associated with general maladjustment in the ASD vs. TD groups?

Table 4 shows correlations of the Big Five traits with internalizing and externalizing symptoms within the ASD and TD groups. In contrast to the results for symptoms specific to ASD (as measured by the ADOS and SCQ), many of these within-group correlations were significant. However, the pattern of findings was somewhat different for the two groups. A moderated multiple regression analysis with the ASD and TD groups pooled together showed that diagnostic status (ASD vs. TD) significantly moderated the effect of Agreeableness on internalizing and the effect of Neuroticism on both internalizing and externalizing. Specifically, lower self-reported Agreeableness was related to more internalizing in the ASD group, r = −.34, p <. 05, whereas the association in the TD group, although nonsignificant, was in the opposite direction, r = .22, ns . Also, Neuroticism according to both sets of reporters was much more strongly associated with internalizing and externalizing in the ASD group relative to the TD group (see Table 4 for correlations), and, when self-reported, even had a tendency to negatively predict externalizing in the TD group.

It is noteworthy that internalizing and externalizing symptoms were themselves correlated .48 ( p < .01) in the ASD group and only .28 ( p = .05) in the TD group, suggesting that children and adolescents with ASD are more likely to co-experience symptoms of these different forms of psychopathology. Also, as would be expected, individuals with ASD relative to TD individuals were characterized by more internalizing ( M = 64.53, SD = 15.17, vs. M = 45.24, SD = 8.06, t (95) = 7.825, p < .01) and more externalizing ( M = 60.23, SD = 12.40, vs. M = 43.67, SD = 5.31, t (95) = 8.567, p < .01).

Do ASD individuals show less self-insight than TD individuals?

Self-other agreement using a trait-centered approach.

We first examined whether self-other agreement correlations between self and parent reports of personality were significant for each of the Big Five traits, across the total sample and separately for the ASD and TD samples (see Table 5 ). Counter to the prediction of poor self-insight in ASD individuals relative to TD individuals, agreement correlations were statistically significant for almost all of the Big Five traits, except Conscientiousness, in the ASD sample, and, similarly, for almost all of the Big Five traits, except Neuroticism, in the TD sample. In the ASD sample, correlations between self- and parent reports were moderately positive, ranging from .19 for Conscientiousness to .42 for Neuroticism, with a median of .34. In the TD group, the correlations were moderate to high, ranging from .23 for Neuroticism to .71 for Extraversion, with a median of .38. According to a z -test of the difference between independent correlations, the only significant group difference was for Extraversion, for which TD children and their parents showed substantially higher levels of agreement than ASD children and their parents. Thus, except for the Extraversion domain, ASD and TD children tended to show similar levels of agreement with their parents about their personality tendencies.

Note . N = 50 for ASD group and 49 for TD group. ASD = Autism Spectrum Disorder; TD = Typically Developing.

Self-other agreement using a person-centered approach (i.e., profile agreement)

Although ASD and TD individuals tended to show similar levels of agreement for each trait, it is possible that they will disagree with informants about their trait profiles, i.e., which traits are more or less definitive of them. Table 6 shows agreement correlations between self- and parent-rated profiles, across the total sample and separately by group. We found higher overall agreement in the TD sample. However, decomposing overall agreement into its constituent parts of distinctive and normative agreement indicated that the higher agreement in the TD sample was driven by TD individuals' having higher normative agreement relative to the ASD sample, both in terms of participants' self-rated profiles' converging with the average self-rated profile and the parent-rated profiles' converging with the average parent-rated profile. An interesting implication of lower normative agreement in the ASD group relative to the TD group is that the ASD group was less homogenous than the TD group, with ASD targets' tending to have less “average” profiles. However, with regard to distinctive agreement, which is the more telling index of self-insight, ASD and TD samples did not differ from each other, suggesting that individuals with ASD and TD individuals have comparable self-insight.

Do ASD individuals self-enhance (vs. self-diminish) relative to TD individuals?

Finally, we examined directional deviations between child self- and parent-reported personality traits using t -tests. Consistent with our prediction, children with ASD tended to rate their personality traits more favorably than did their parents, rating themselves as more Conscientious ( d = +.83, p < .01), more Open to Experience ( d = +.44, p < .05), and less Neurotic ( d = −.89, p < .01) than their parents rated them; no significant differences were found for Agreeableness ( d = +.15, ns ) or Extraversion ( d = +.27, ns ), although they were in the direction of self-enhancement. The effect sizes for Conscientiousness and Neuroticism were large ( Cohen, 1988 ), indicating a high degree of self-enhancement. In contrast, TD children tended to rate their personality traits in a less favorable manner than did their parents, indicating that they were less Agreeable ( d = −.70, p < .01), less Open to Experience ( d = −.32, p < .05), and more Neurotic ( d = +.43, p < .05) than their parents rated them; no significant differences were found for Conscientiousness ( d = −.27, ns ) or Extraversion ( d = −.33, ns ).

Thus, from a trait-centered approach, we found significant levels of self-other agreement for nearly all Big Five personality traits in individuals with ASD. Although these correlations were far from perfect, the level of agreement was comparable to that found in our TD individuals. We also found comparable levels of self-other agreement in the two groups using a person-centered approach – ASD and TD groups showed similar levels of distinctive agreement. Finally, individuals with ASD and TD individuals were characterized by tendencies to self-enhance and self-diminish, respectively. The implications of these and the previous findings are discussed below.

General Discussion

The present research investigated two broad questions about individuals with ASD: (1) Do their personality characteristics differ from those of TD individuals?, and (2) Do they have poor insight into these personality characteristics, both in terms of self-other agreement and directional deviations from informant reports?

Personality in Autism

With regard to the first question, Studies 1 and 2 demonstrated that children, adolescents, and young adults with ASD have distinct personality profiles as compared to TD individuals. As hypothesized, individuals with ASD tended to be higher in Neuroticism and lower in Extraversion, Agreeableness, Conscientiousness, and Openness to Experience. These personality differences (a) were observed in samples of children and adolescents as well as adults, (b) were perceived similarly by both self and parents, (c) were similar for males and females, and (d) held after controlling for IQ.

By examining personality in two age cohorts of ASD and TD individuals using the same Big Five measure, we were able to determine that personality is indeed affected in adults with ASD and to delineate a (very) preliminary and tentative understanding of personality trait development from late childhood to young adulthood in ASD. We found trait differences in young adults in Study 1 that were even greater in magnitude than those reported by children and adolescents in Study 2, indicating that personality differences are indeed evident in adults. This finding also presents the possibility that personality differences persist in adulthood and might even increase. More rigorous designs appropriate to these questions, such as longitudinal studies that track stability and change of personality in the same set of individuals with ASD over time, will be important to implement in the future. As Happé and Charlton (2012) observed, the first children ever identified as having “autism” since the term came into clinical use in the 1940s are just now entering old age. Nevertheless, the vast majority of research on autism has ventured no further than adolescence, leaving areas for research on adults with ASD wide open and critical to conduct.

The replication of findings across self and parent reports in Studies 1 and 2 strengthens the claim that these are actual personality differences and do not reflect the unique biases of a particular informant. Also, the inclusion of a sufficient number of girls and women in both ASD cohorts allowed us to determine that the personality traits associated with ASD did not differ for men and women (Study 1) or for boys and girls (Study 2), despite characterization of ASD as a fundamentally “male” syndrome (e.g., as per the “extreme male brain” theory of autism, Baron-Cohen, 2002 ). Indeed, due to the significantly higher rate of autism among boys, girls are often neglected in research on ASD. Thus, while not a primary aim of the present research, results provide much needed data on the interpersonal and intrapsychic manifestations of ASD in girls and women.

The current research has several implications for understanding the link between autism and personality. First, the findings provide a comprehensive portrait of the personality traits associated with ASD and align with De Pauw et al. (2011) and Kanai et al. (2011) to suggest that the unique attributes of individuals with ASD as manifested in their personality cut across all basic traits: rather than being restricted to the interpersonal domains of the Big Five – Extraversion and Agreeableness – individuals with ASD showed differences in all five domains. As a point of comparison, the alteration of personality in ASD is more extensive than that seen in attention deficit hyperactivity disorder, a condition that shares many characteristics with ASD and that is often comorbid with it, but for which Extraversion and Openness to Experience do not seem to be significantly affected ( Nigg et al., 2002 ). The only possible exception in the breadth of personality difference was for Openness to Experience, the one dimension for which De Pauw et al. and Kanai et al. yielded divergent findings and, interestingly, the one dimension of the Big Five that is not consistently represented in proposed dimensional models of psychopathology ( Saulsman & Page, 2004 ; Widiger & Simonsen, 2005 ).

The current findings also point to which personality traits in ASD are affected most. Effect sizes across Studies 1 and 2 suggest that Neuroticism and Conscientiousness, followed by Agreeableness, were the key areas of group difference. In contrast, De Pauw et al. (2011) pointed to Extraversion followed by Openness, and Kanai et al. (2011) to Neuroticism followed by Extraversion, as the main points of divergence. More work is needed to achieve a coherent understanding of which traits are central to defining ASD relative to normal development and to determine the source of disparity between studies (e.g., cultural moderators of actual vs. apparent differences, other sample characteristics, assessment methods).

Neuroticism was also the best predictor of group membership in the discriminant function analyses. Previous clinical studies have underscored the importance of Neuroticism in differentiating between clinical and non-clinical groups ( Bagby, Costa, Widiger, Ryder, & Marshall, 2005 ; Morey et al., 2002 ). As a trait that deals with emotional reactivity, lability, dysregulation, and overall distress, Neuroticism may well serve as a general marker for susceptibility to psychopathology. Especially when combined with low Conscientiousness, Neuroticism paves the way for it ( Muris, 2006 ). The extent to which then “adding” low levels of Agreeableness and Extraversion results in features consistent with ASD in particular would be profitably explored by using the Big Five to compare ASD to other psychiatric disorders, not just to typically developing individuals. Pinpointing the areas of major impairment at the level of broad personality traits can help researchers appreciate some of the core vulnerabilities associated with ASD and highlight which aspects of functioning to monitor and target in treatment.

In studying ASD within the context of the Big Five, the current research contributes to a growing move toward conceptualizing typical and atypical functioning within a common framework – along a single set of continua. Researchers are currently shifting toward a dimensional trait model for refining the diagnostic system of the DSM ( Adam, 2013 ; Cuthbert & Insel, 2013 ; Krueger, Derringer, Markon, Watson, & Skodol, 2011 ; Widiger & Costa, 2012 ; Wright et al., in press ). The proposed model comprises twenty-five maladaptive personality traits that fall within the five higher-order domains of negative affectivity (e.g., emotional lability, restricted affectivity), social detachment (e.g., withdrawal, intimacy avoidance), antagonism (e.g., manipulativeness, deceitfulness), disinhibition (e.g., impulsivity, rigid perfectionism), and psychoticism (e.g., unusual beliefs and experiences, perceptual dysregulation), all with varying correspondences to the Big Five. This formulation of maladaptive trait levels reflecting and undergirding pathology has tended to focus on personality disorders – themselves largely studied in the context of adulthood – but could be extended to other forms of psychopathology, such as early-emerging developmental disorders like autism.

To be sure, the current studies produced at least three findings that call for caution in treating ASD as dimensional. First, the Big Five, despite offering a valuable taxonomy for describing the full range of personality variation, were far from perfect predictors of ASD vs. TD group membership according to discriminant function analyses, suggesting there is more to ASD than extreme personality trait levels. Second, personality traits explained a negligible portion of the variance in clinician-observed ASD-related behaviors in both of our ASD samples and did not predict variability in parent-rated ASD symptoms within the ASD or TD groups, not even when parents provided all information, in which case trait-symptom associations should have been inflated because of shared method variance. Third, we found disparate links between personality traits and adjustment problems (internalizing/externalizing) in the ASD vs. TD groups, again arguing against continuity across groups. In the TD group, internalizing was related to Neuroticism and low Extraversion, and externalizing, to low Conscientiousness and low Agreeableness, replicating common findings on personality predictors of maladjustment in children ( Prinzie et al., 2003 ; Van den Akker et al., 2013). However, Neuroticism and low Agreeableness – not low Extraversion – were related to Internalizing in ASD, and Neuroticism in addition to low Agreeableness and low Conscientiousness were related to externalizing in ASD, suggesting that traits have unique relationships with maladjustment in ASD.

In fact, we found a provocative relation between Neuroticism and ASD symptoms in Study 2 that suggests that this trait in the context of ASD, at least in adulthood, may operate differently than would be expected based on the normal personality literature. Neuroticism was negatively related to symptom severity in adults with ASD. That is, higher Neuroticism predicted lower symptoms. Although baffling at first blush, this association actually accords with previous work on ASD and depression. Vickerstaff et al. (2007) found that higher intellectual functioning in individuals with ASD predicted better social functioning but also greater depression because it was associated with greater awareness of social deficits and, thus, lower perceptions of social competence. Other investigators have explained higher rates of depression in higher functioning individuals with ASD in similar ways (Capps, Sigman, & Yirmiya, 1995; Gillberg, 1984 ; Green, Gilchrist, Burton, & Cox, 2000 ; Hill, Berthoz, & Frith, 2004 ). 5 Perhaps adults with ASD are even more likely to show better social functioning alongside greater distress due to their having had more opportunity to experience the discrepancy between their desired vs. actual behavior and outcomes. Future work should directly test the validity of this interpretation and replicate the tendency for more neurotic adults to show lower levels of ASD symptomatology, especially given the tenuousness of this finding when outliers are excluded.

To further probe the dimensionality of ASD, researchers should examine the personality correlates of ASD using a measure of the Big Five that is specifically designed to tap pathological functioning (e.g., the Personality Inventory for DSM-5; Krueger, Derringer, Markon, Watson, & Skodol, 2012 ). Doing so might allow the five-factor model to explain more of the variance in ASD. For example, Openness, on which we found small group differences, is not the same as its pathology-focused analogue, psychoticism (also labeled schizotypy, oddity, or peculiarity), which contains considerable variation beyond that of typical everyday functioning and encompasses unusual experiences and beliefs, perceptual dysregulation, and eccentric thought ( Krueger et al., 2011 ; Tackett, Silberschmidt, Krueger, & Sponheim, 2008 ). In fact, psychoticism might be a dimension where autism especially makes its mark. There is now evidence suggesting that ASD and schizophrenia exist on the same genetically underpinned continuum, labeled “developmental brain dysfunction” ( Moreno-De-Luca et al., 2013 ), making a dimension that represents aberrant basic perceptual and cognitive processing of reality important to assess in ASD.

Connections between personality and autism may also elucidate the considerable heterogeneity observed within the ASD phenotype. Even if personality did not predict variability in ASD symptom severity in the current research, it could be that personality relates to specific constellations of maladaptive characteristics in ASD. For example, Wing and Gould (1979) distinguished between three subtypes of autism – aloof, passive, and active-but-odd – that differ in characteristics such as the tendency to spontaneously approach others (evidenced only by the active-but-odd type) versus the tendency to amiably respond to others' approaches (evidenced by both the passive and active-but-odd types, but not the aloof type). These characteristics could relate to Big Five traits of Extraversion, Agreeableness, and Neuroticism. In addition, autism often co-occurs with personality disorders. Lugnegård, Hallerbäck, and Gillberg (2012) found that 48% of a sample of individuals with Asperger's syndrome met criteria for schizoid, avoidant, obsessive-compulsive, or schizotypal personality disorders, and remarked that ASD comorbid with schizoid personality disorder seemed to correspond to the “aloof” type from Wing's classification. Perhaps personality can help flag autism that runs alongside other conditions that have personality dysfunction at their heart. Assessing differential standing on the Big Five could thus facilitate a more nuanced characterization of autism and its myriad manifestations.

One question that cannot be answered by the present research is how to explain the link between personality and autism. Tackett (2006) described several non-mutually exclusive models that seem applicable in the present context. First, the spectrum model proposes that personality traits and psychopathology lie on a single continuum, with psychopathology being a more extreme manifestation of a particular trait or set of traits. Second, the vulnerability or predisposition model proposes that certain personality traits put children and adolescents at greater risk for developing a particular form of psychopathology. Third, the scar or complication model proposes that psychopathology changes, or influences the development of, personality traits. Fourth, the pathoplasty or exacerbation model proposes that personality traits shape the way psychopathology manifests, perhaps channeling the phenotypic expression of the underlying disorder into a subtype. Longitudinal studies, beginning early in development, are needed to test these different possibilities. In addition, it would be helpful to track the biological mechanisms common to personality traits and ASD. For example, the neuropeptide oxytocin, which appears to play a critical role in the formation and maintenance of social behavior from infancy onward with implications for Agreeableness, may be deficient and part of an underdeveloped system in autism ( Carter, 2007 ).

Finally, by situating autism within the Big Five framework, we can link the condition to all other psychological constructs and outcomes that have been related to the Big Five. Research has indicated that all five dimensions (i.e., for the most part, higher Extraversion, Agreeable-ness, Conscientiousness, Openness, and lower Neuroticism) are associated with successful life outcomes, and that opposite standing on these dimensions contributes to problematic outcomes ( Mullins-Sweatt & Widiger, 2010 ; Ozer & Benet-Martinez, 2006 ). Indeed, a latent class analysis conducted by De Clercq, Rettew, Althoff, and de Bolle (2012) found that this same trait profile we found for ASD individuals – that is, of systematically lower trait levels relative to the modal personality profile – represented the most “vulnerable” personality profile, with the highest associations with various forms of psychopathology (but not including ASD). Based on their Big Five personality profile, individuals with ASD are more likely to have poor performance at school and work; less satisfying and less stable romantic relationships; less social acceptance; less social support; lower subjective well-being and more distress; and to experience more health problems and shorter lifespans ( Ozer & Benet-Martinez, 2006 ). Many of these outcomes have, in fact, been documented in individuals with ASD, and the present findings suggest that we can turn to personality as one explanatory mechanism.

Self-Insight in Autism

The current research contributes to abiding questions about whether individuals with autism have self-insight. Despite a widespread and longstanding assumption that they do not, we found individuals with ASD showed significant levels of understanding into their personality across different operationalizations of self-insight. Using a trait-centered approach, ASD individuals showed significant self-other agreement for four of the Big Five dimensions. Although these correlations were far from perfect, the level of agreement was similar to that in the TD individuals. Using a person-centered approach, ASD and TD individuals showed similar distinctive agreement, that is, agreement on their unique profile of defining traits. These findings suggest that individuals with ASD have a reasonable degree of insight into their own personalities. They recognize, at least to some extent, that they tend to be socially withdrawn and inhibited; less soft-hearted, empathic, and warm; less organized and responsible; and less emotionally stable, with more frequent and intense bouts of anxiety and sadness, than TD individuals. They also recognize, at least to some extent, the differential extent to which these qualities define them.

Agreement in the ASD group was highest for Neuroticism. Neuroticism is the personality dimension that, perhaps as a function of dealing extensively with negative affective states, most set apart ASD and TD individuals according to mean-level group differences and discriminant function analyses in both studies. Finding high self-other agreement in the ASD group for this domain relative to the others is noteworthy as well as counterintuitive given that alexithymia is fairly common in individuals with ASD ( Ben Shalom et al., 2006 ; Berthoz & Hill, 2005 ; Hill, Berthoz, & Frith, 2004 ) and given that Neuroticism usually elicits the lowest level of self-other agreement in TD individuals – as it did in our TD sample – partly because its indicators are less observable to informants ( John & Robins, 1993 ; Funder, 1999 ).

It could be that the high levels of Neuroticism in individuals with ASD made aspects of this dimension sufficiently salient to the individuals and observable to others to allow for high agreement. Consistent with this, Furr, Dougherty, Marsh, & Mathias (2007) found across a sample of children with and without conduct disorder that self-other agreement was higher for traits central to the pathology than for those less relevant. It could also be that children with ASD are encouraged to talk about their thoughts and feelings, particularly those dealing with anxiety and upset, as those are a major issue for them and may be explicitly confronted with parents, teachers, and therapists, promoting higher agreement. Consistent with this, studies examining whether ASD individuals have insight into their specific psychiatric symptoms – termed “clinical insight” ( Beck et al., 2004 ) – as well as life difficulties stemming from them, such as academic and physical problems, suggest moderately high self-other agreement (median r = .45), although with a very broad range of results across studies (range = −.08 to .73) ( Farrugia & Hudson, 2006 ; Johnson et al., 2009 ; Knott et al., 2006 ; Koning et al., 2001 ; Vickerstaff et al., 2007 ).

However, there was one personality dimension – Extraversion – for which self-other agreement was significantly lower in the ASD group relative to the TD group, a difference in part attributable to the superior self-insight of TD individuals for this dimension above all others, itself a common finding in the personality judgment literature due to its high observability (e.g., John & Robins, 1993 ; Funder, 1999 ). Given that self-reported Extraversion in children with ASD was not systematically biased relative to parent reports, the lower agreement suggests a greater amount of “noise” (i.e., random error) in the self-perception of individuals with ASD for this dimension. One possibility is that individuals with ASD used more transient reference points when gauging their level of Extraversion, perhaps basing their reports on their latest social interaction; that is, the “noise” could be attributed to state effects. Another possibility is that some children with ASD compare themselves to others with ASD, leading to an overestimation of their Extraversion level, whereas others compare themselves to TD individuals, leading to a more accurate (or perhaps even underestimation) of their Extraversion level; such individual differences would attenuate the magnitude of child-parent agreement. Finally, because individuals with ASD have selectively social deficits, some individuals could have had difficulty understanding the questions that probed Extraversion. This lack of Expertise ( Funder, 1995 ) could also explain why self-other agreement for Conscientiousness in ASD was so low that it failed to reach significance.

Overall, finding a significant level of self-insight in ASD prompts a host of intriguing questions. For example, what is the process by which individuals with ASD are able to know themselves? The items on the BFI would have called for individuals' being familiar not only with their internal states (e.g., “is depressed, blue”) but also their social proclivities (e.g., “is helpful and unselfish with others”), relative mental aptitudes (e.g., “is ingenious, a deep thinker”), and even how they are perceived by and/or affect others (e.g., “generates a lot of enthusiasm”). Relatedly, what does the success of individuals with ASD with self-description say about the three pathways that we distinguished in the literature for how self-knowledge can break down or be preempted in ASD? The present findings suggest that individuals with ASD have sufficient introspective capacity, sufficient mastery of concepts for tracking their personal attributes (such that they can recognize and use these concepts), and may even have sufficient experience with and understanding of the social world to learn about their personality traits and how they come across to others, at least to their parents. As mentioned, it could be that individuals with ASD get a generous amount of explicit feedback about themselves due to their condition. More research is needed to determine the possible sources of self-knowledge in ASD. For example, research can utilize measures of self-consciousness and self-reflection, inner speech, social comparison, Theory of Mind and other processes for understanding implicit social feedback, quantity and quality of available explicit social feedback and performance information, and size and composition of social networks, to determine whether, and to what extent, they mediate accurate self-knowledge in ASD.

Indeed, given our findings, it is interesting that even individuals with ASD themselves do not think they know themselves well. Adults with ASD do not believe they have any more insight into their inner states and personal traits than close others have about them, whereas non-clinical controls consider themselves the “self”-experts ( Mitchell & O'Keefe, 2008 ). Similarly, Dritschel, Wisely, Goddard, Robinson, & Howlin (2010) found that adolescents with ASD believe that close others have more knowledge about their internal states and qualities than they do. This is remarkable, given that most people take for granted that they know themselves better than others know them, even for attributes for which this is not the case ( Vazire, 2010 ). One intriguing possibility is that trait self-knowledge is preserved in the face of other disturbances in self-perception. Instances like this have been documented by Klein and his colleagues for several disorders, most recently for schizophrenia ( Klein, Altinyazar, & Metz, in press ). Their work has led them to suggest that self-knowledge “is impervious to a host of cognitive and neuropsychological insults capable of rendering other systems of knowledge partially or fully inoperable” and that trait self-knowledge may be “an unusually robust, evolutionarily ancient social adaptation” (p. 4).

In addition to assessing self-insight in terms of agreement, we also examined the tendency for ASD and TD individuals to show systematic directional deviations (self-enhancement vs. self-diminishment) in their personality trait ratings. The ASD group tended to provide overly favorable reports of their personality, whereas the TD group tended to provide unfavorable reports, relative to parent reports. Here, questions arise as to the underlying reasons for self-enhancement in individuals with ASD. Notably, self-enhancement is not an uncommon phenomenon. Research with TD individuals has found that “[m]ost people, most of the time, see themselves through rose-colored glasses” ( Sedikides, Horton, & Gregg, 2007 , p. 783). Studies comparing self-evaluations to an external criterion have generally found a small self-enhancement effect -- typically around a third of a standard deviation (e.g., John & Robins, 1994 ; 1997 ) -- that reflects the presence of substantial individual differences in the degree and direction of bias. In the present research, self-enhancement was found only in the ASD sample, with effect sizes surpassing .80 standard deviations for Conscientiousness and Neuroticism. Whereas cognitive and motivational factors have been invoked to explain self-enhancement in TD individuals ( Schriber & Robins, 2012 ), it is not clear that the same processes account for self-enhancement in individuals with ASD. For example, in TD individuals, narcissism is strongly associated with the tendency to self-enhance (e.g., John & Robins, 1994 ). Could it be that individuals with ASD are more narcissistic than TD individuals?

Without using the term “narcissistic,” Attwood (2007) suggested that individuals with ASD, especially those with superior intellectual abilities, (1) may overcompensate for feelings of inadequacy in social situations by becoming “arrogant and egocentric” (p. 20); (2) “have considerable difficulty acknowledging that they have made a mistake… can be hypersensitive to any suggestion of criticism, yet overly critical of others, including teachers, parents or authority figures” (p. 21); and (3) turn “a lack of ability in social play with peers and in interactions with adults [into] behaviors to achieve dominance and control” (p. 26). Frith and colleagues similarly call attention to a certain self-absorption intrinsic to ASD, terming it naïve egocentrism ( Frith & de Vignemont, 2005 ). When the low Agreeableness that characterizes individuals with ASD is thrown into the mix, these individuals might have the makings of a narcissist. However, no studies to date have examined a link between autism and narcissism. Only one exploratory study, Abell and Hare (2005) , nods at the issue with observations of elevated levels of grandiose and persecutory delusions in a sample of adult males with Asperger's. Thus, evaluating narcissism in ASD in future studies could be one way to unpack the positivity bias seen in the present research.

Another issue raised by the current findings is whether the parents themselves – the measure of the “truth” – are differentially biased toward ASD vs. TD children. For example, the positive biases seen in the ASD sample could actually reflect excessive harshness on the part of the parents, rather than the overly rosy self-views of individuals with ASD. Years of learning about and living with a child with ASD might lead parents to be more knowledgeable of, observant of, and acutely sensitive to autism-related traits and other perceived shortcomings in their children. As such, the parents of individuals with ASD might be liable to assign ratings that are excessively unfavorable, their failing to see their children with dispassionate eyes when considering their attributes. Following this reasoning, it is possible that in Study 2, the difference in Openness to Experience, which only held for the parent reports, reflects the unique perspective of parents toward their children with ASD, rather than an actual tendency for children and adolescents with ASD to be less exploratory, imaginative, and creative than TD children and adolescents. Ultimately, to assuage the concern of observer harshness and to further investigate self-criterion agreement and positive bias in ASD, future work should introduce other criterion measures, such as objective behavioral measures and ratings along the trait parameters by observant yet less emotionally involved informants (e.g., clinicians).

Taken together, the present findings provide evidence that individuals with autism have distinct personality traits and a reasonable degree of insight into their relative standing on these traits, with a tendency to provide systematically overly favorable ratings of themselves. A better understanding of the personality and self-evaluative processes in individuals with ASD could have important ramifications for how to conceptualize and treat autism, as well as for how to understand the interface between personality, self-insight, and pathological functioning more generally. We may ask, for example, what is the relation between personality, self-insight, and the potential for personality change in autism? Also, is self-insight in autism associated with better outcomes for individuals with ASD either intrapsychically (e.g., subjective well-being) or interpersonally (e.g., social functioning) or both? We hope our findings pave the way for more research on personality traits in individuals with ASD and on the nature and extent of their insight into these and other aspects of themselves.

Acknowledgments

This research was supported by National Institute of Child Health and Human Development Grant HD064687 to Roberta A. Schriber, National Institute on Drug Abuse Grant DA017902 to Richard W. Robins, and National Institute of Mental Health Award 1-K-08 MH074967-01 and Building Interdisciplinary Research Careers in Women's Health Award K12 HD051958 funded by the National Institute of Child Health and Human Development, Office of Research on Women's Health, Office of Dietary Supplements, and National Institute of Aging to Marjorie Solomon.

1 The revised ASD diagnostic criteria for the updated DSM-V places all variants of ASD diagnosis (e.g., Asperger's syndrome, high-functioning autism) under the general umbrella of “autism spectrum disorder” and collapses the three criterion domains of social impairment, communication impairment, and fixated interests/repetitive behaviors into two: social/communication impairment and fixated interests/repetitive behaviors (APA, 2010). Recent work (Huerta, Bishop, Duncan, Hus, & Lord, 2012) suggests the majority of individuals with DSM-IV ASD diagnoses are eligible for an ASD diagnosis under the revised criteria.

2 We also examined whether group differences emerged at the facet level (Soto & John, 2009), for which the BFI includes facets of: Assertiveness and Activity (Extraversion); Altruism and Compliance (Agreeableness); Order and Self-Discipline (Conscientiousness); Anxiety and Depression (Neuroticism); and Ideas and Aesthetics (Openness). In Study 1, all trait-level group differences replicated at the facet level, except no group difference was found for Aesthetics. In Study 2, all trait-level group differences replicated at the facet level for parent reports, but were not significant for Assertion, Order, or Aesthetics, and only marginally significant for Depression, p = .10, in child self-reports. Repeated-measures ANOVAs, with Group (ASD vs. TD) as the between-subjects factor and Facet as the within-subjects factor, revealed no Group × Facet interactions in either study.

3 In both Studies 1 and 2, all ASD vs. TD differences in personality remained significant after controlling for age as well.

4 Although the BFI has not been validated for children under 10, alpha reliabilities in the subsample of 8- and 9-year old children reached satisfactory levels (albeit somewhat lower than in the full sample), ranging from .44 (Extraversion) to .77 (Agreeableness) for self- reports and from .87 (Extraversion) to .91 (Neuroticism) for parent reports.

5 Consistent with the idea that higher intellectual functioning is related to self-insight, we found that IQ in the ASD group was associated with distinctive agreement, r = .30, p < .05; this association was not significant in the TD group, r = .14, ns . However, in consistent with the idea that higher self-insight is related to better social functioning, we found no significant associations between distinctive agreement and ASD symptom severity or internalizing/externalizing, either within or across the ASD and TD groups.

Contributor Information

Roberta A. Schriber, Department of Psychology, University of California, Davis, Davis, CA, U.S.A.

Richard W. Robins, Department of Psychology, University of California, Davis, Davis, CA, U.S.A.

Marjorie Solomon, University of California, Davis School of Medicine, Department of Psychiatry, MIND Institute, Imaging Research Center, Sacramento, CA, U.S.A.

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“I like being autistic”: Assessing the benefit of autistic-led psychoeducation for autistic children

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Background Despite receiving autism diagnoses in early life, autistic children are not routinely supported to understand these diagnoses post-diagnostically ( 1 ). Consequently, they typically grow-up lacking an accurate understanding of what it means to be autistic on both a collective and individual level ( 2 ). Without this foundational knowledge, children’s understanding of autism is garnered from how others perceive their autism, resulting in an understanding of autism, and of themselves, that is inherently negative ( 3 ). This lack of appreciation of their own individual needs, also denies them the important self-understanding afforded by the diagnosis in the first instance, alongside the opportunity to effectively self-advocate for themselves when these needs go unmet.

Aims Here we sought to directly assess the benefit of a pre-recorded, online autistic-led psychoeducation course about autism and the lived experience of being autistic (i.e., ‘NeuroBears’ https://www.pandasonline.org ), for children’s understanding of autism and their autistic experiences, their feeling about being autistic, their communication with others about their autistic experiences, and their confidence to self-advocate for their needs.

Methods Using a concurrent embedded mixed-methods, repeated-measures design, autistic children (aged 8-14 years), completed a bespoke questionnaire exploring the above topics, both before and after completing NeuroBears at home with a nominated safe adult. A total of 63 children (mean age=10.57 years) completed sufficient content to be included in the analysis.

Results Significant benefit was observed across a range of areas, including a significant improvement in the children’s knowledge and understanding of being autistic and of their unique strengths and challenges, a significant rebalancing of how the children viewed being autistic, evidence of emerging positive autistic identities and a growing sense of belongingness, a significant change in the children’s abilities to communicate about being autistic, and evidence of strengthening self-advocacy skills.

Conclusion Learning about autism in a neutral and non-stigmatizing manner, and presented through the lens of autistic lived experience, conferred numerous benefits on autistic children’s self-understanding, emergent autistic identity, sense of belonging, and on their communication/self-advocacy skills. Future work is needed to establish the downstream benefits on wellbeing and quality of life.

Competing Interest Statement

The authors have declared no competing interest.

Funding Statement

This study did not receive any funding

Author Declarations

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

The Faculty of Medical Sciences Research Ethics Committee of Newcastle University's Research Ethics Committee gave ethical approval for this work

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

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All data produced in the present study are available upon reasonable request to the authors

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What I’ve Learned From Working With Autistic Children

Allyson Bates, OTD, OTR/L, SWC, PAM

As an occupational therapist , I work with children with autism to help them become more independent with day-to-day activities like eating, dressing, and grooming. As a former schoolteacher and practicing OT, I will always be a lifelong learner, striving to better meet the needs of the children I work with. In honor of World Autism Awareness Day and Autism Acceptance Month , I want to share what I have learned from working with Autistic children and how autism teaches us the importance of acceptance, patience,  and reflection.  

Acceptance  

When I first began working with Autistic children, I honestly struggled to better understand and support them. Our differences made it hard for me to connect and I found myself only teaching these kids to conform to what I viewed as “typical” behavior. The more time I spent with these children, the more I began to accept that all people are different and unique.

I learned that my job is to help the children I work with live life to their fullest potential, but that will look different for every person.  

We live in a world with societal norms and expectations. Everything needs to be done in a particular way that often doesn’t work for these children.  It is hard for parents to watch their children struggle with small things that just came naturally to them.  

I recently read, “ The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism ” and the author Naoki Higashida shared,  

“To give the short version, I’ve learned that every human being, with or without disabilities, needs to strive to do their best, and by striving for happiness you will arrive at happiness. For us, you see, having autism is normal — so we can’t know for sure what your ‘normal’ is even like. But so long as we can learn to love ourselves, I’m not sure how much it matters whether we’re normal or autistic.”   

One way to support children with ASD includes accepting and valuing our differences .  The responsibility is on us to change our perspective, environment, and norms to better meet the needs of these kids. 

Patience is everything when you’re working with Autistic children. Parents have thanked me for staying positive, celebrating the small victories, and “not giving up” on their children.  

Some parents struggle with therapists stopping treatment because their child responds physically or isn’t learning the skills despite multiple attempts and presentations. Our kids put in so much effort to accomplish daily tasks that we take for granted; let’s reward them with patience and celebration of growth of any size. Autistic children teach us what real goals are and the real things to celebrate. I am not the perfect therapist, but I’ve learned from my patients that staying positive and patient opens up more opportunities for success. 

Reflection   

So many seemingly small things can be endlessly frustrating for my patients—it’s too loud, the tag is scratching at their skin, putting on their jacket is impossible, the routine changed, the activity is new and not what they were expecting. Their frustration may present in different ways , like running away, hitting, or throwing objects. Sometimes, it’s hard not to take their reaction personally or push back with my own frustrations.  

Reflection has helped me more successfully identify the source of their frustrations. Taking the time to identify the source means I can better anticipate their needs and adjust tasks and the environment to meet them where they are. Autistic children often thrive on structure, predictable routines /transitions, wait time, skills broken down into achievable steps, and reinforcement. But there is no one-size-fits-all solution and something that worked today may not have the same result tomorrow. Be persistent, try a new approach, and reflect on what worked or didn’t.  

What Autism Has Taught Me

I hope you enjoyed my personal reflection on autism and what it has taught me. It’s a privilege to learn every day from autistic children who experience the world differently. Our NAPA parents online community is filled with stories from parents who have learned acceptance, patience, and the value of reflection from their children. I’m honored to have the opportunity to join them. 

About the Author

Allyson Bates is an occupational therapist who works with children with autism and other diagnoses to promote independence and enjoyment in meaningful daily activities. She was previously an elementary school teacher and now has worked at the Neurological and Physical Abilitation Center (NAPA) for over ten years. She is passionate about sharing knowledge and research to increase awareness about the kids and families she works with. 

Find Additional Resources in the NAPA Blog:

• Person-First Language: How to Use It and Why It Matters
• 10 Tips for Creating a Visual Schedule for Your Child
• Speech Delay vs. Autism: Identifying the Differences
• Benefits of Weighted Vests for Children With Autism
• Benefits of Sign Language and Other Forms of AAC for Autism

About NAPA Center

At NAPA, we take an individualized approach to therapy because we understand that each child is unique with very specific needs. For this reason, no two therapeutic programs are alike. If your child needs our services, we will work closely with you to select the best therapies for them, creating a customized program specific to your child’s needs and your family’s goals. Let your child’s journey begin today by contacting us  to learn more.

Related Posts

Whole body vibration – what’s the buzz all about, five things i wish i knew before going to school to be a pediatric ot, common speech & communication difficulties associated with autism, privacy overview.

Well-Being Practices to Support Autism Caregivers

How to promote personal well-being practices in families affected by autism..

Updated July 23, 2024 | Reviewed by Margaret Foley

• What Is Autism?
• Find counselling to help with autism
• Parents of autistic children report significantly higher stress levels than parents of non-autistic children.
• A lack of adequate support for family members, especially adults, exacerbates parental stress.
• Mindfulness exercises have been shown to help reduce stress in parents of autistic children.
• Maintaining a gratitude practice can decrease depressive symptoms and enhance social support for parents.

Caregiver well-being has long been a topic of discussion in the autism community. The Interagency Autism Coordinating Committee (IACC), the federal advisory committee that coordinates and provides policy recommendations to the multiple government agencies that provide resources and support to the autism community, recently held its quarterly meeting focused on the topic of family caregivers. There is a long research history of parents of autistic children reporting higher levels of stress than parents of allistic children (Barroso et al., 2018; Lee et al., 2017; Rivard et al., 2014) and parents of children who experience other developmental disabilities (Griffith et al., 2010; Gupta, 2007).

Much of this parental stress emanates from the lack of adequate resources and supports for family members of all ages, but particularly for adults. Though it’s to be expected for autistic children to live with their parents, a disproportionate number of autistic adults also remain living with their parents (Roux et al., 2015). This living arrangement is of particular concern as parents age (Marsack & Samuel, 2017).

In the United States, autistic children have a right to a free, appropriate public education through the Individuals with Disabilities Education Act (2004). Although educational services are mandated, families of autistic children still struggle to find appropriate support programs outside of the school setting. The challenges in finding support for autistic adults are significant, with parents reporting that services are difficult to obtain and wholly inadequate (Marsack & Samuel, 2017).

This post is going to share well-being practices that parents of autistic children have used to decrease stress and promote well-being, but it is essential to look upstream and address these system-level factors. As the wise Dr. Lakshmin (2023) says, "You can't meditate your way out of a 40-hour work week with no childcare, without health insurance.” You also can’t meditate your way out of caring for your 50-year-old autistic son, who requires 24/7 supervision with no respite services, day programs, or community living supports. The system must do better.

While advocating for and addressing these system-level issues, parents can be supported in learning and engaging in evidence-based well-being practices to support their well-being. Two fairly well-known practices in today’s society are mindfulness and gratitude .

• Mindfulness. The American Psychological Association defines mindfulness as the awareness of one’s internal states and surroundings, and the practice is used in many therapeutic interventions. Mindfulness has also made it into popular culture as a practice that can increase well-being. Some of the practices of mindfulness include specific breathwork (Aideyan et al., 2020), meditation , and progressive muscle relaxation (Feldman et al., 2010). There is some specific research dedicated to parents of autistic children. Practicing mindfulness has been found to help decrease the stress of mothers of autistic children (Lilly & Tungol, 2015; Weitlauf et al., 2020).
• Gratitude. Gratitude is the act of recognizing and acknowledging the good things that happen, resulting in a state of appreciation (Sansone & Sansone, 2010). Some of the practices of gratitude include keeping a gratitude journal, writing and reflecting on good things that happen each day, and writing gratitude letters to convey your gratitude to others. The practice of gratitude has been shown to contribute to a decrease in depressive symptoms for parents of autistic children (Martin et al., 2019), and a disposition of gratitude also increases the likelihood of improved social support for parents (Lovell & Wetherell, 2023).

It may seem easy to say to parents, “Start engaging in mindful practices and keep a gratitude journal—your stress will decrease.” But in an already overloaded lived experience, this might just seem like someone saying, “You want me to do more!” Our system of care has to figure out how to build in these practices as a helpful, supportive gesture. Maybe parent support groups can start with a mindful moment where everyone can breathe together, or service providers can start conversations with families by asking, “What went well today?” to help parents identify the good in their day—even if it was just that they had time to sit down and eat a sandwich.

Family caregivers need more support. Their well-being is unacceptably low compared to that of other sectors of the population. We must take action, systemically and individually.

Aideyan, B., Martin, G. C., & Beeson, E. T. (2020). A Practitioner’s Guide to Breathwork in Clinical Mental Health Counseling. Journal of Mental Health Counseling, 42(1), 78–94.

Barroso, N. E., Mendez, L., Graziano, P. A., & Bagner, D. M. (2018). Parenting stress through the lens of diferent clinical groups: A systematic review & meta-analysis. Journal of Abnormal Child Psychology, 46(3), 449–461.

Feldman, G., Greeson, J., & Senville, J. (2010). Differential effects of mindful breathing, progressive muscle relaxation, and loving-kindness meditation on decentering and negative reactions to repetitive thoughts. Behaviour Research & Therapy, 48(10), 1002–1011.

Griffith, G. M., Hastings, R. P., Nash, S., & Hill, C. (2010). Using matched groups to explore child behavior problems and maternal well-being in children with Down syndrome and autism. Journal of Autism and Developmental Disorders, 40(5), 610–619.

Gupta, V. B. (2007). Comparison of parenting stress in diferent developmental disabilities. Journal of Developmental and Physical Disabilities, 19(4), 417–425.

Individuals with Disabilities Education Improvement Act, 20 U.S.C. §§ 1400-1482.

Lakshmin, P. (2023). Real self-care: A transformative program for defining wellness (crystals, cleanses, and bubble baths not included). Penguin, London.

Lee, J. X., Ong, S. I., Lee, V. Y., & Abd Rahman, F. N. (2017). Parenting stress among Malaysian parents of children with Autism Spectrum Disorder (ASD). Medicine & Health, 12(1), 42–55.

Lilly, J., & Tungol, J. R. (2015). Effectiveness of mindfulness based psycho-educational program on parental stress of selected mothers of children with autism. Indian Journal of Positive Psychology, 6(1), 52–56.

Lovell, B., & Wetherell, M. A. (2023). Social support mediates the relationship between dispositional gratitude and psychological distress in caregivers of autistic children. Psychology, Health & Medicine, 28(8), 2084–2094.

Marsack, C., & Samuel, P. (2017). Mediating Effects of Social Support on Quality of Life for Parents of Adults with Autism. Journal of Autism & Developmental Disorders, 47(8), 2378–2389.

Martin, F., Clyne, W., Pearce, G., & Turner, A. (2019). Self-Management Support Intervention for Parents of Children with Developmental Disorders: The Role of Gratitude and Hope. Journal of Child & Family Studies, 28(4), 980–992.

Rivard, M., Terroux, A., Parent-Boursier, C., & Mercier, C. (2014). Determinants of stress in parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 44(7), 1609–1620.

Roux, Anne M., Shattuck, Paul T., Rast, Jessica E., Rava, Julianna A., and Anderson, Kristy, A. (2015). National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University.

Sansone, R. A., & Sansone, L. A. (2010). Gratitude and wellbeing: the benefits of appreciation. Psychiatry, 7(11), 18.

Weitlauf, A. S., Vehorn, A. C., Taylor, J. L., & Warren, Z. E. (2014). Relationship satisfaction, parenting stress, and depression in mothers of children with autism. Autism, 18(2), 194–198.

Patricia Wright, Ph.D., MPH, is executive director of Proof Positive, a national non-profit that works to integrate and expand well-being programming for autistic individuals and their communities.

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• The Capabilities Statement for Social Work with Autistic Adults

Capabilities Statement for Social Work with Autistic Adults (2.33 MB)

The Capabilities Statement for Social Work with Autistic Adults (easy read) (2.56 MB)

This section of the Capabilities Statement is based on the Purpose ‘super domain’ of the PCF, which is about ‘Why we do what we do as social workers, our values and ethics, and how we approach our work.’ (BASW, 2018; p. 4). Within the PCF, this includes the domains 2 – Values and Ethics, 3 – Diversity and Equality, 4 – Rights, Justice and Economic Wellbeing.

Key messages

The foundational values of social work with autistic adults are recognising, appreciating, and promoting the values of neurodiversity. Within the community of autistic people, the label or category  ‘autism’ is rejected by some and accepted by others. Social workers should know how people describe themselves and their self-identity.

 The purpose of social work is supporting autistic adults to identify their needs and communicate how autism distinctly impacts on their everyday lives. Social workers should understand the impairmentsthat people can experience from the impact of autism and work with them to address them.

Social workers should underpin their work with principles of personalisation. This means acknowledging and welcoming the abilities and creativity of autistic adults, whilst understanding how autism impacts on them individually, and within their social and online networks.

Recognising individuals’ strengths and empowering them

As a ‘spectrum’ of conditions, autism impacts uniquely on each individual. This may be visualised as a continuum – at one end, individuals need minimal support whilst others at the other end of the continuum, may need high levels of care. However, it is recognised that autistic adults have strengths – for instance autistic adults involved in the development of this Capabilities Statement identified their strengths as: creativity, understanding and adhering to routines, knowing detail, ability to occupy themselves through routinised leisure activities, and awareness of stimuli within their immediate environment.

Therefore, social workers should operate within strengths-based approaches, starting from the position that autistic adults have abilities.

The focus should be on individuals’ strengths and abilities and not deficits. However social workers should also recognise that the strengths gained from autism can result in each autistic adult needing specific assistance, depending on contexts such as their personality and family circumstances (O’Dell, 2016). Social workers should therefore involve autistic adults in (self) identification of their strengths.

The above also involves supporting and empowering autistic people to maximise their ability to identify their life choices (and preferences) and to make decisions about all aspects of their lives. These include routine activities and life-changing events (places of residences, social networks and relationships, education, and health and social care).

Autistic adults involved in developing this Capabilities Statement urged social workers to start each conversation with them with the statement ‘what are your priorities today?’ This formulation will enable autistic adults to lead the discussion by identifying their preferences.

Social workers should:

• Ensure that their work with autistic adults is underpinned by principles of personalisation. This means holding the individual at the centre of practice, working with them to identify their unique abilities and challenges, and working alongside them to achieve their (self) identified needs
• Understand strengths-based approaches to social work (Baron et al, 2019), reflecting on their applicationto practice with autistic adults
• Focus on what individuals can do and reflect on their assumptions about how autism impacts Promoting the human rights and dignity of autistic adults

Autistic adults experience uneven access to the human and welfare rights enshrined in law. For instance, the Care Act 2014 and accompanying statutory guidance (DHSC, 2018) stipulate the right to assessment, however autistic adults involved in the development of this Capabilities Statement reported reduced realisation of this right. To prevent discrimination in the workplace and increase the employment opportunities of autistic people, employers are required to make ‘reasonable adjustments’ for autistic people.(National Autistic Society (NAS), 2016). However their rate of employment remains low.

Most autistic adults want a job and where in part-time employment, they want to increase their hours, however 48% those in employment, involved in a survey by the National Autistic Society (2016) reported bullying. During consultation with autistic adults to develop the Capabilities Statement, they reported impeded access to the same right to support and social relationships experienced by neurotypical adults.

To contest discrimination and stigma, social workers should adhere to The Code of Ethics for Social Work (BASW, 2014), seeking to protect the human and legal rights of autistic adults, ensuring social justice for them. Social workers should champion the human rights of autistic adults – for example, right to family life, enjoyment and experiences of sexuality and sexual lives, and their right to choose their friendship networks. Peoples’ right to make ‘unwise decisions’ should also be respected.

• Understand how the Care Act ‘right to assessment’ applies to autistic adults who may have needs that require provision of services. Social workers should also know about human rights and understand the laws on rights to parenting, welfare support, health care, and employment
• Understand the distinct oppression and discrimination experienced by autistic adults
• Ensure that they listen to autistic adults, recognising that they are ‘experts’ about their needs and the barriers they face in fulfilling their rights and entitlements.

Promoting self-determination, advocacy and anti-oppressive practice

Advocacy is the action that social workers undertake to protect and promote peoples’ human rights, access their rights and pursue their goals. The principle of self-determination (BASW, 2014) also requires social workers to engender the conditions which enable people to ‘speak up’ for themselves. An important component of social work with autistic adult is therefore enabling and supporting self-advocacy as this generates opportunities for people to identify their own needs, articulate their viewpoints, and challenge professionals, including their allocated social worker and/or what they want from social work. During the consultations to develop this Capabilities Statement, an emergent theme was the need for social workers to involve another autistic self-advocate in initial home visits. This will increase trust and understanding between them and their social worker.

Social workers should understand the distinctive forms of discrimination experienced by autistic adults who have other characteristics also associated with disadvantage and discrimination.

Research evidence from the United States suggests that black and minority ethnic (BAME) people receive later diagnosis (Bishop-Fitzpatrick et al, 2019) than the majority white population. This can delay preventative work or early intervention. Some non-Western cultures do not have equivalent translations for the term ‘autism’, making it difficult for people to describe their condition or navigate services (Hussein et al, 2019).

Social workers should deploy their professional knowledge, power and legal status to advocate and challenge oppressive practices (Tew, 2006). The latter may include scrutinising the commissioning of services for autistic adults and supporting the development of accessible and appropriate services.

The third aspect of this capability is that social workers should enable autistic adults to access the independent/specialist advocacy services enshrined in the Care Act 2014, the Mental Capacity Act 2005 (Liberty Protection Safeguards) and the Mental Health Act 1983.

• Understand different models of advocacy and attain the knowledge, skills and confidence to challenge professionals (including their colleagues) where necessary
• Promote self-advocacy as a starting point of their work with autistic adults and develop their professionalskills to advocate effectively on behalf of autistic adults
• Understand the Equality Act 2010 and other legislation through which discrimination and unlawful practicescan be challenged by autistic adults themselves and by professionals, including the impact of multiple oppressions and inequalities.

This part of the Capabilities Statement focuses on the knowledge and skills required for effective social work practice with autistic adults. It is based on the Practice ‘super -domain’ of PCF - ‘What we do – the specific skills, knowledge, interventions and critical analytic abilities we develop to act and do social work’. (BASW, 2018; p. 4). (NICE) includes the PCF domains: 5 – Knowledge; 6 – Critical Reflection and Analysis; 7 – Skills and Interventions. It should be cross-referenced with the Knowledge and Skills Statement for Social Workers in Adult Services (Department of Health (DoH), 2015).

Social workers can co-create positive changes with autistic adults through relationship-based practice underpinned by sound knowledge about how autism impacts on people, theories of social change and commitment to ethical practice.

Social workers should focus on peoples’ needs and strengths, and not diagnosis alone. Some people may show signs of autism and yet not want to be diagnosed, while others may find diagnosis beneficial. Social workers should contest any situation in which a diagnosis and identification of autistic is used as the gateway to services.

An important social work aim should be preventative work. Regular health assessments can ensure the identification of co-occurring health conditions, stopping worsening physical and mental health of autistic adults. Including sensory needs and ‘triggers’ of crises in all assessments can reduce behaviours whose management challenge professionals and carers, and co-production of de-escalating plans of crises can prevent involvement of coercive psychiatric treatments.

Understanding autism and co-existing conditions

Social workers should understand the signs of autism and its impact on individuals. This includes recognising that the:heterogeneity of impairments, strengths and co morbid conditions necessitates a wide range of support. While some individuals need little or intermittent support, others require substantial daily support. Similarly, carers may also have their own support needs.’ (D’Astous et al, 2014; p. 791).

Social workers can increase their knowledge about autism through regular training, however in their everyday work, to attain holistic understanding of the effect of autism on individuals’ needs and develop corresponding personalised care plans, social workers should do direct work with autistic adults and their carers; and work in partnership with allied health and care professionals (National Institute of Care Excellence, (NICE) 2016). Some autistic adults may also resist diagnostic labelling and it is therefore important that social workers know how autism might manifest in peoples’ health, social, and developmental needs.

There is evidence that the presence of autism signals other health issues, this means that autism and other health conditions can exist simultaneously.

Autism and common co-occurring conditions

• Anxiety disorders, which may be caused by autistic adults ‘concerns about disruptions to their routines’ (Gaigg et al, 2018).
• Eating disorderssuch as bulimia, over-eatingor avoidance of food (Harper et al, 2019)
• Epilepsy – please see ‘Epilepsy and autism’on website of Autistica
• Learning disability - It is estimated that Around 4 in 10 autistic people have a learning disability.’ Autistica  website .

However, other medical issues may not be recognised through ‘‘diagnostic overshadowing’, a process by which physical symptoms are misattributed to mental illness [or disability].’ (Jones, 2008). Thus, professionals can sometimes misrepresent physical and mental illness in autistic adults as symptomatic of autism and therefore not address them.

The social worker’s role is vital. Social workers should prioritise needs assessment, instead of diagnosis alone, focusing on peoples’ strengths and the impact of any condition on their everyday functioning through person-centred assessments and care planning (as stipulated) in the Care Act. During diagnosis, social workers should advocate for the assessment of other co-occurring health conditions (NICE, 2014). Through (self) advocacy and multi-agency working, social workers should ensure that autistic adults have regular medical check-ups.

• Seek to work in partnership with individuals to understand how being autistic impacts upon them daily
• Access Continuing Professional Development (CPD) opportunities toensure their knowledge about autismand co-occurring conditions remaincurrent and relevant to social work practice
• Understand that not all adults showingsigns of autism will have or desire a medical diagnosis. Social workers should focus on addressing peoples’needs through multi-agency assessments and self-identification of social and health needs taking account of family and carers’ views where appropriate, instead of pursuingdiagnosis as an end goal.

Developing relationship-based approaches

In the consultations with autistic adults to develop this Capabilities Statement, they explained that their experiences of their first meetings with the social worker are likely to shape the rest of that relationship. They noted that:

• Home visits by social workers cause them anxiety, and this is amplified if they are parents, because they fear that their children ‘will be taken away’. This can lead to ‘catastrophising’ – ‘Because of this high state of anxiety, many autistic people find that their brain goes straight to worst case scenario in a variety of situations.’ (MacAlister, 2017). The level of anxiety maylead to some autistic adults being unable to verbalise their thoughts
• Stemming from the anxiety caused by visits,autistic adults demand punctuality and consistency; and they require social workers to fit into their routines, instead ofbeing required to adhere to schedules primarily designed by their social workers.

The above means that a key aspect of relationship-based practice with autistic adults is preparation for visits and minimising anxiety. This involves learning about the person, making preparations for introductions, including considering the environment and any sensory difficulties, alongside the social worker providing their photographs and agenda for discussion ahead of the visit. Communication through text message or email may support the beginnings of this relationship. Some autistic adults prefer interacting with professionals online because this minimises outside stimuli, which can overload them sensorially (Bertilsdotter Rosqvist et al, 2013).

The practical steps that social workers should adopt in a relationship-based model with autistic adults are: openness, honesty and transparency, building trusting relationships; agreeing the aims of work and how this will be achieved, punctuality; consistency and familiarity such as maintaining a similar appearance, outfit or hair style, as this can support relationships to develop.

• Ensure that they minimise any anxiety that may be caused by their professional status and their home visits. Autistic adults advise the following to minimise their anxieties:social workers writing ahead of theirvisit to explain their role and purpose,being punctual, respecting their sensory and communication needs, and modelling ‘good’ behaviours
• Display professionalism and use supervision and other sources of support to critically reflect on behaviour conducive to maintaininggood relationships
• Seek regular feedback from autistic adults and their carers; their own colleagues and managers about theirapproach and practice, and act upon it.

A model of relationship-based practice with autistic adults

Assessment, support, and care planning

In the Care Act 2014 an assessment is a ‘critical intervention in its own right’ rather than ‘a gateway to care and support’ (DASH, 2018). This means that autistic adults have a legal right to assessment of their needs. However, social workers may be involved in different kinds of assessments for autistic adults. They may be part of the process of diagnosis – for instance signposting, participating in the multi-agency assessment and/or supporting people during and after diagnosis (Casey and Eastwick, 2011). Social workers may also be involved in needs assessment, mental health and capacity assessments, or assessing behaviors that other professionals or carers cannot manage (NICE, 2018).

Assessment and care planning should always involve the autistic adult who needs services, and where possible it should be led by them. For the reasons discussed under ‘Developing relationship-based approaches’ assessing the needs of autistic adults may take longer than other adults as the social worker needs to understand the peoples preferred method of communication and the distinct manner in which their autism impact on them. Social workers should embrace the importance of dialogue between themselves and autistic adults and develop shared understanding of their needs. Due to the time required to conduct appropriate assessments, managers need to allocate the requisite timescales for assessments.

In completing social work assessments, appropriate planning and environmental factors are important considerations. Autistic adults benefit from clear processes and preparing them for the visit or meeting is essential. This may include sharing photographs of the venue, providing copies of questions or the assessment framework in advance to reduce anxiety.

It is essential for social workers to prepare for assessments by gathering all available information about the autistic adult. This is because the person may:

• have limited communication skills andunderstanding, therefore social workers should use assistive technology where necessary
• feel uncomfortable having aconversation with a ‘stranger’ and tominimism this, social workers should understand peoples’ styles of relatingto others
• not understand who the social workeris and why they are visiting them. This means that social workers should clearly explain their role, emphasizing their statutory duties and professionalCode of Ethics
• not be able to define what their own needs are and to overcome this, social workers should speak to friend andfamily carers who can explain what they need
• not be able to talk about or explaintheir needs very easily, and so riskmisrepresenting what they want (or need). A simple method of checkingwith the person and allowing them tocomment on assessments can ensure accurate representation of their needs
• although the person can speak fluently, but may mask difficulties with actualunderstanding. Social workers should cross-check information with carersand other professionals
• try to say the ‘right’ thing in responseto the social worker’s questions ratherthan stating what their actual needsare. Therefore they should beempowered to ‘speak up forthemselves’ and be assured that they have a right to self-determination

Adapted from Sakai and Powell (2008)

Assessments should aim at assisting people to live within their communities and maintain their existing beneficial social networks. High quality care planning and appropriate support services are essential to ensuring that people can stay in their homes safely. Focusing on people’s strengths and safeguarding; assessments should also consider any trauma that an autistic person may have experienced.

Social work assessments require skills around curiosity and questioning. For example, when working in partnership with an autistic adult it is essential to look beyond a basic questioning approach. In asking someone whether they can do their food shopping, the answer may be yes, however further exploration of how they do so may show support is required. Thus, good assessments require good interpersonal and relationship-building skills, empathy and curiosity, knowledge of relevant theory, law and evidence; and reflection.

Social workers need to be creative by using communication aids and assistive and digital technologies to engage with the person, where appropriate.  Assessments should be conversational in tone and should be informed by strengths-based approaches focusing on people’s abilities, their capacities to resolve issues in their lives, take decisions, and express their wishes. Assessments should identify strengths that may lie in their social and support networks, focused on independent living and self-determination.

Care planning should aim at ensuring that autistic adults enjoy the same quality of life as everyone else – for example, access to suitable accommodation, employment, recreation and leisure; fulfilling their right to family life, participation in society, sexual relationships, and meeting of peoples’ cultural and religious needs.

• Develop their skills in strengths - andrelationship-based assessment and care planning, rooted in partnership and creative conversations
• Support autistic adults to prepare for assessments by giving them advance notice of the items for discussion
• Ensure that care plans are rights-based, enabling autistic adults to exercise their right to self-determination; to live well and safely in the community

Responding to the sensory and communication needs

‘Many people on the autism spectrum have difficulty processing everyday sensory information. Any of the sensesmay be over- or under-sensitive, or both, at different times. These sensory differencescan affect behaviors, and can have a profound effect on a person’s life.’ (National Autistic Society) (wow.autism.org.UK/about/behaviors/sensory-world.asps)

Some of the autistic adults involved in developing this Capabilities Statement advised that they have heightened sensory awareness, and this can cause discomfort or pain – for example the sound of hand dryers, smell of perfumes, the sounds of shoes clipping on the floor. Difficulties in sensory processing may mean that an autistic adult has a strong revulsion to some stimuli, or that they continuously seek some sensations to fulfil their sensory needs. Sensory difficulties may also be caused by alterations to environment that autistic adults are used to – for example, different meeting venues or unfamiliar settings (for instance hospitals). Unaddressed sensory needs can profoundly impact an autistic adult – for instance they may lead to display of behaviors difficult to manage – people may become overwhelmed and cannot control their actions - or difficulties in (non) verbal communication.

Social workers should understand peoples sensory needs by asking them and professionals involved in their care.

It is also known that ‘abusive or restrictive social environments’ can cause behaviors that are difficult to manage (NICE, 2015), and that where people are under-stimulated or have limited social interaction, they may display behaviors which attract attention to their needs, but are nevertheless challenging to manage. By this understanding, behaviors that is challenging to manage can be caused by environmental factors and not necessarily by autism and/or other related conditions. Therefore, in care planning, social workers should ensure that autistic adults have the space to express their repetitive behaviors safely and they do not feel unduly constrained.

Similar to the above discussion, social workers should understand how autistic adults who they work with communicate – for example unusual or out-of-character behaviors may be a signal for sensory overload. Social workers should use different communication methods: writing letters, emails, etc; visual aids, and assistive and digital technologies. Communication should cover one matter at a time to avoid confusion, and should be devoid of assumptions, metaphors and jargon.

Communication with autistic adults should be underpinned by professional values and ethics, such as empathy, empowerment, understanding, and the right to self-determination. Social workers should be mindful that compared to autistic adults, they have more power because of their legal status and their roles (Boaten and Wiles, 2018). They should exercise this power ethically by working alongside autistic adults, taking a needs-led instead of service-led approach.

Social workers should continue to develop and reflect on their generic communication skills in practice. They should also know when specialist communication aids and assistive technology are required. When working with autistic adults from different cultures, social workers should consider working with self-advocates from their communities or using translators (NASH, 2014). However, this should be carefully planned to respect the routines and sensory needs of the autistic adult.

• Social workers should: lInclude the sensory needs of autisticadults in their assessments; they should develop and update ‘sensory profiles’ and plans to appropriately adjust the environments of autistic adults
• Understand peoples’ preferred methods of communication, including how unaddressed sensory needs can impact on interaction andretention of information
• Reflect on their skills and capabilitiesin communicating with autistic adults and/or meeting their sensory needs

Partnership working and co-production

In the Care Act 2014, co-production is defined as ‘when an individual influence the support and services received, or when groups of people get together to influence the way that services are designed, commissioned and delivered.' (DASH, 2018). In social work with autistic adults, this means ensuring that they are involved in all decisions about their care, support, and service provision, and both the social worker and the autistic adult (and their family) ‘doing the work together - from start to finish.’

Practical examples of co-production preferred by autistic adults who participated in the development of this Capabilities Statement include: the addition of their self-assessment of their needs in social workers’ assessments and care plans, being given drafts of assessments and care plans for feedback and corrections; and autistic adults setting agendas and leading discussions at meetings (at home or with professionals). Co-production can be attained through open and transparent relationships between social workers and autistic adults based on trust and mutual respect, and a commitment from social workers to empower autistic adults. This approach also recognizes that autistic adults have expert knowledge to improve services.

Social Workers should:

• Understand co-production – the principles and practice applications
• Ensure inclusion of autistic adults in assessment and all aspects of their care planning
• Engage in critical reflection to explore the application of values of co-production in social work practice and apply learning to improve interventions.

Supporting and maximizing decision-making capacity

Social work with autistic adults should be underpinned by the five principles of the Mental Capacity Act 2005 (MAS), meaning that:

• Autistic adults should be assumed to have mental capacity to make their own decisions, unless there is contrary evidence
• They should be supported to make their own decisions before any assessment of cognitive capacity is conducted
• The right of autistic adults to make ‘unwise decisions’ should be respected
• Where necessary, all decisions taken on behalf of autistic adults should be in their best interest
• All interventions – for example during crises – should be based on the ‘least restrictive’ principle.

When assessing the mental capacity of autistic adults, social workers should understand the impact of autism on cognitive capacity – for instance on their ability to ‘understand’, ‘retain’, ‘use’ and ‘weigh up’ the information given to them for the assessment (Department for Constitutional Affairs, 2007). Autism can impact on how someone ‘understands’ or ‘weighs up’ information and autistic adults may not demonstrate the same emotional response as necrotypical people to some questions about ‘feelings. Thus, in assessing an individual’s ability to ‘retain’ or ‘weigh up’ information, social workers should understand the personal impact of autism on a person’s ability to ‘process’ information and ‘appreciate’ the consequences of the decision to be made. Some autistic adults may present as ‘knowledgeable’ without being able to ‘appreciate’ the full implications of their choices.

In following the time-specific principle of the MAS, social workers also need judgement skills to ascertain the most appropriate time for assessments. Mental capacity fluctuates. The MAS requires assessments to done when people are known to demonstrate their optimal levels of cognitive capacity.

Thus, if an autistic adult is experiencing ‘meltdown’ or ‘shutdown’ this will not be the appropriate time for assessments. However, every attempt should be made to support autistic adults to make their own decision first, before an assessment is conducted. This should include using communication aids to support a person’s understanding, providing accessible information, using ‘autism friendly’ language, involving their carers, giving them time to process the information, and respecting sensory needs during the assessment (NICE, 2018). Social workers are encouraged to draw on the skills and values discussed under the ‘Practice’ section of this Capabilities Statement in this work.

• Understand the principles and valuesof the MAS and the Liberty Protection Safeguards and their interface with the Care Act 2014 and Mental Health Act 1983
• Assume that autistic adults can maketheir own decisions, and where this doubted, they should maximite the potential for them to demonstrate cognitive capacity
• Document the wishes and values of autistic adults and an assessment of situations that impair their cognitive capacity and how these may be overcome. This plan should be co-produced with the autistic adult

Indicators of health inequalities in autistic people

• Premature mortality: 16 years sooner than the rest of the population. This increases to 30 years for autistic adults with a learning disability (Autistic, 2016). Furthermore ‘The risk of early mortality from all causes among people with autism is nearly twice that of the general population.’ (Mandell, 2018; p. 234)
• Increased mortality: Rate of death for autistic adults with a neurological condition is 40 times higher than the rest of the population. (Autistic, 2016).
• Suicide: An often-cited Swedish study (Histrionism eta al, 2018) found increased deaths from suicide, arising from psychiatric co-occurring conditions and lack of protective factors from social and familial networks
• Eating disorders: There is a recognized association between autism traits and eating disorder. Around 1 in 5 women with anorexia are autistic (Harper eta al, 2019), with worse outcomes than the general population. Often, individuals who are undiagnosed will first present to eating disorder services in a crisis – social workers need to be aware of the significance of this and ensure they are knowledgeable in accessing specialist support.

Autistic people experience barriers to health care. For instance, systems for making appointments are often through telephones and staff may not have training in how autistic people communicate. Sensory needs may also deter people from realizing the pain they are experiencing, or they may be sensitive to touch during a consultation; and the ‘environmental factors’ within waiting rooms and medical consultations, may discourage autistic adults from accessing health services (Autistic, 2016).

Social workers need to understand the entrenched structural inequalities that lead to these health inequalities – for instance Black, Asian, and Minority Ethnic groups will experience even more impeded accesses to health services for diagnosing autism and treating co-occurring conditions. Social workers need to understand these persistent inequalities and through advocacy, interagency working, and co-production, assist families to challenge and shift these barriers. 

Using listening, assessment, safeguarding, and inter-agency working skills, social workers should understand signs of suicidal ideation and take emergency action, where required. Autistic adults may also not verbalism these thoughts, but suicidal ideation may manifest through their actions and repetitive behaviors. It is essential that social workers support individuals to access support in order to overcome barriers experienced in accessing health care.

Understand causes and indicators ofhealth inequalities in autistic adults, and how they apply to ethnic minority groups, who face particular forms of discrimination in accessing health and social care services lAssist autistic adults and their carers to reraise their rights enshrined in the Mental Capacity Act 2005 and the Care Act 2014 to make their owndecisions and choices in health and social care lChallenge and advocate on behalf of individuals and communities to ensure access to autism friendly health care services

Knowledge and skills in safeguarding

Social workers have a legal and ethical duty to safeguard autistic adults. Due to their sensory needs and preference for their own company; alongside stigma and labeling, it is recognized that autistic adults experience elevate risk of social isolation. This can also increase exposure to financial, sexual, and physical exploitation. (wow.autism.org.UK/ about/communication/social-isolation.asps). An autistic adult may also have specific behaviors which may place them and others at risk – for instance propensity to leave the family home at night; ‘wandering off’ and therefore ‘going missing’. Where an autistic adult does not conform to ‘typical’ social norms, this may place them at risk of arrest or stigma. Autistic adults also experience hate crime (adults whose disability impacts them ‘socially and behaviorally’ are four times more likely to be victims of hate crime). Within family settings, where carers are unable to manage escalating behaviors that challenge them, they may confine an autistic adult to a room, or try to restrain them, for their own safety. The former has medical implications, however, potentially, it could lead to the deprivation of the liberty of the autistic adult. Other forms or risk include (self) medication through alcohol and other drugs as a coping mechanism for bullying and co-occurring mental health issues (Rodessa and Pirri, 2015).

Social workers should understand and assess environmental and institutional risks to autistic adults. 80% of autistic people over age 16 have been bullied or taken advantage of by someone they thought to be a friend, and offense known ‘mate crime’. (wow.merseysidesafeguardingadultsboard. co.uk/mate-crime/) There have been high profile examples of systematic abuse and human rights violations within institutions.

Social workers should know the signs and impact of a range of abuse – for example, criminal exploitation, grooming, cuckooing, modern day slavery, forced marriage, gangs and extremism.

When visiting hospitals or other care provision, social workers must be curious, question practices, spend time listening and observing, and be confident to challenge. Social workers should scrutinise care plans and ensure that autistic adults are not unlawfully being deprived of their liberty.

Making Safeguarding Personal requires safeguarding work to be person-centred and enhances their involvement, choice and control. The goal should be to improve peoples’ quality of life, wellbeing and safety. During safeguarding investigations, social workers must take the time to build relationships based upon trust, and support individuals to share their experiences. Safeguarding concerns cannot be fully assessed in a single visit and outcomes must be based upon the analysis of information from different agencies and carers. Social workers must be prepared to seek out information and at times to ‘think the unthinkable’.

From institutions to community living: the role of the social worker

Social workers were key within the multidisciplinary efforts of deinstitutionalisation and closures of long-stay hospitals in the 1960s – 1990s. The role of social workers in enabling people with disabilities to lead empower, self-determined lives in communities is as important now as it was then. 

In 2011, an undercover journalist secretly filmed physical and emotional abuse of adults with learning disabilities and autism at Winterbourne View private hospital. The footage captured of some of the hospital’s most vulnerable patients being repeatedly pinned down, slapped, draggedinto showers while fully  clothed, taunted and teased by staff.

In 2019, another Panorama journalist secretlyfilmed a disturbingly similar pattern of abuse at Whorlton Hall in County Durham.A separate 2019 Care Quality Commission(CQC) Review of seclusion found 62 adultsand children, some as young as 11, were being held in isolation, sometimes for years.

The highlighted examples of malpractice and abuse show institutional failures, lack of oversight in commissioning, and practice deficiencies. People should not be in long stay, inadequate, at worst abusive institutions. In working with autistic adults, social workers should therefore ensure that the starting point is accommodation within the community.

• Understand safeguarding legislation and policy and their local procedureson inter-agency working and investigations
• Understand the interface between the Liberty Protection Safeguards, the Mental Health Act, and criminal justice. Social workers should reviewsafeguarding plans, ensuring that they enhance the liberty of autistic adults; have ‘proportionate’ interventions based on the least restrictive principle, and are consistentwith ‘Making Safeguarding Personal'
• Enhance their skills at assessing, intervening, and reviewing the safetyand suitability of all care and accommodation arrangements for autistic adults in family and institutional settings.

Understanding and applying the law

Social workers require in-depth knowledge of human right legislation and the legal frameworks underpinning their role and they should keep abreast of developments in case law and precedents. At the time of writing, the relevant laws, guidance, and Codes of Practice in England included:

• The Care Act 2014
• The Autism Act 2009
• ‘Statutory guidance for Local Authorities and NHS organisations to support implementation of the Adult Autism Strategy’ (DoH, 2015)
• Mental Health Act 1983 (as amended 2007)
• Mental Capacity Act 2005 and the Mental Capacity (Amendment) Act 2019
• Human Rights Act 1998
• Equality Act 2010
• Children Act 1989
• Children and Families Act 2014
• Children and Social Work Act 2017
• Special educational needs and disability code of practice: 0 to 25 years

The Care Act (2014) is the primary adult social care legislation and taking into account the particular needs of autistic people, the Autism Act (2009) is autism specific. Both legislation and accompanying statutory guidance stipulate that social care assessments of autistic adults must be completed by an assessor who has a good understanding of autism, or they must consult someone who has relevant experience. Consequently, social workers should know about autism, and their legal duties; and they should be skilful at applying the law to practice.

• Understand the Care Act 2014, the primary legislation in adult social care and its interface with the Mental Capacity Act 2005, the Mental Health Act 1983 (as amended2007), alongside the Autism Act 2009 and accompanying statutory guidance
• Regularly refresh their knowledge of legislation (including case law, new guidance, and regulations)
• Through critical reflection, understandthe interplay between laws, the values, ethics and practices of social work; and how these can be drawn upon to improve the lives of autistic people.

Transition planning for autistic people

Autistic adults involved in the development of this Capabilities Statement explained that they experienced transitions everyday – this could be ‘minor’ occurrences such as moving between activities, or significant life events such transitioning to adulthood, moving homes, hospital admissions, bereavement, or change of social workers. Every transition experience is unique to that individual; thus, support and intervention must be person-centred and strengths-based. Whatever the transition may be, the need for planning is essential. For example, in changes of accommodation, photographs, written descriptions of the new residence, and introductory visits are essential.

For an autistic young person entering adulthood, they may experience changes in their care plans (potential reduction of services) and accommodation; and their services will be managed under the Care Act 2014 instead of the Children Act 1989.

Whether an autistic child was known to Children and Adolescent Mental Health Services (CAMHS) or generic children’s social care services can also impact on transition planning. One of the main themes that emerged from the consultations with social workers to develop this Capabilities Statement is gaps in children’s social workers’ understanding of the Care Act 2014. Similarly, adult social workers do not have the requisite understanding of the Children Act 1989. This gap in the knowledge of the respective workforce can impede transition planning, especially where children have been known primarily to CAMHS. Additionally, when children move to adult services, it may be determined that their needs do not meet the threshold for adult services, leaving them unsupported in the community. For some people this change in routine and support can trigger ‘crises.’

Children’s social workers should begin transition planning early, paying attention to national guidance. Furthermore, all social workers should draw on their critical reflection and analytical skills to remain empathetic and understanding of the implications, meaning, and emotional impact of transition from the perspective of autistic adults and their carers.

• Understand the statutory and practice guidance and legal rights on transitions to adulthood. These include the Children and Families Act 2014 (under which Education, Health and Care Plans must be maintained until the age of 25) and the role of the Care Act 2014 and the Mental Capacity Act 2005 in transition planning
• Understand the practical and emotional impact of transitions and ensure person-centred planning, respecting peoples' right to self-determination
• Advocate for change and improvementwhen the experience of transition between services is inadequate, at individual and systems levels.

Supporting family and friends’ carers

While most carers find caring rewarding and recognise that they have an (inter)dependent relationship with autistic adults that they care for, the role can also be emotionally, physically, and mentally challenging. Carers involved in the development of this Capabilities Statement reported limited access to support and recognition of their entitlement to services. Social workers should be open and honest in their approach, seeking to build effective relationships with carers. This includes seeking their views in any assessments, reviews, care and support planning; and appreciating their expert knowledge about the people they care for. This must however be balanced with the wishes and feelings of the autistic adult. Therefore, using their judgement skills, social workers should maintain a balance between autistic adults’ right to privacy and involvement of carers in assessments and care planning.

Social workers must recognise that carers’ physical and emotional wellbeing and their financial resources are fundamental to their ability to support autistic adults; however, these can be affected by their roles. Carers are entitled to assessments under the Care Act 2014. Support plans should include an analysis of the everyday caring role of carers and identify contingency plans for how this will be met should they no longer be able to fulfil this. Support should also be offered to carers to attain their own life goals.

• Understand, apply and promote the law, policy and local arrangements to support carers including the provision of carers, assessments under the Care Act 2014
• Work in partnership with carers to develop trusting relationships based on openness, honesty and transparency
• Provide accessible information about finances, commissioning and decision-making on care planning to carers.

Supporting parenting

Social work with autistic adults can involve supporting them in their role as parents In the consultations to develop this Capabilities Statement, participants who were autistic parents reported encountering stigmatisation and belittling of their parenting skills. They felt this was caused by prejudice, or social workers’ own knowledge gaps on autism. These led to the erosion of their parenting rights.

Notwithstanding their strengths and abilities, autistic adults who are parents experience particular challenges. The birth of a child triggers the involvement of several professionals with different but sometimes overlapping roles in the lives of autistic parents.

This will necessitate several appointments and home visits that must be kept. All new parents can struggle with these new life changes. However autistic people may find this challenging because the involvement of services may lead to disruption of their outines. They may be also be required to socialise with new people in parent groups and they may find this social interaction difficult. Furthermore, the demands of the new baby can clash with the sensory needs of their autistic parents (for instance crying). These can interfere with how autistic parents respond to their child, although they are able and motivated to meet their needs, and it can also impact on their desire to engage with services (Brook, 2017).

In consultations with autistic adults, those who were parents of autistic young people spoke about transition times as being especially difficult. They experience reductions in services. They also have to manage the tension between empowering their young adult children and managing the risks that they face. They said that this may lead to them becoming ‘overprotective’. Supporting autistic parents to young children and adults requires skilful, empathetic, and ethical social work practice. For the reasons discussed under ‘Developing relationship-based approaches’ social workers should seek to minimise the anxieties that autistic parents will experience as a result of their involvement in their lives. Social workers need to be aware of the difficulties parents experience in parenting their autistic son or daughter. Parents can be affected by stereotypes such as ‘parenting stigma’ (in the consultations with autistic adults during the development of this Capabilities Statement, examples given included disapproving looks or unfavourable comments from the public -for example in the supermarket - and lack of understanding from professionals). Parents spoke about how prior to a diagnosis, they were often offered parenting support which was not autism specific.

Social workers need to understand and be able to signpost to services who can offer specialist support. Social workers need to ensure that processes for supporting children are accessible for autistic parents. This may mean thinking differently about home visits, assessments and meetings. The parent should be asked about what their autism means for them and how best to support them.

• Social workers should understand ‘parental responsibility’ and parentingrights under the Children Act 1989 and human rights legislation on the right to family life
• Take time to understand the impact of autism upon an individual’s parenting and any necessary adjustments
• Identify and provide specialist support, seeking guidance from a specialist as required

This section of the Capabilities Statement explains the difference that social workers can make to autistic adults through their knowledge, skills, and values, based on the Impact ‘super domain’ of the PCF - ‘How we make a difference and how we know we make a difference. Our ability to bring about change through our practice, through our leadership, through our understanding, our context, and through our overall professionalism.’ (BASW, 2018; p.4). The Impact ‘super domain’ consists of the PCF domains 1 – Professionalism, 8 – Contexts and Organisations, and 9 – Professional Leadership. 

• With their understanding of the multi-agency context of statutory services,knowledge of social care legislation, and contacts within communities, social workers should: signpost people to services, provide leadership to ensure that care is managed in the community and not hospitals; and they should protect the human rights of autistic adults
• Social workers should understand what causes ‘crises’ for autistic adults, their behaviours during  crises, which can be troubling to manage, and how these can be de-escalated. Social workers should understand the personal, environmental, and developmental factors that cause people to express behaviours that are difficult to manage
• Autistic adults prefer to work with social workers with specialist knowledge of autism. Social workers should request autism training, which should be led by an autistic person. Social workers require regular supervision based on models of critical reflection that enable them to integrate theoretical knowledge and practice wisdom.

Professionalism: providing leadership in multi-agency work

Services for autistic adults are provided within specialist autism teams, specialist learning disability services, or generic adult services; sometimes through integrated NHS and local authority services, or separately. Whatever the configuration, care for autistic people is achieved through multi-agency approaches, featuring different professionals from both the statutory and third sector.

Within this context, social workers are relied upon because of their whole systems understanding of peoples’ needs and configuration of services such as housing, welfare benefits, behaviour support, and safeguarding (Boahen, 2016). In multi-agency work, allied professionals’ value social workers’ understanding of the law and human rights, while people who use services treasure the profession’s value base (Manthorpe et al, 2008).

The social work role with autistic adults must include professional leadership. Drawing on their understanding of autism, social workers should signpost people to diagnosis services and arrange post-diagnostic support. Social workers should be able to apply social work knowledge, skills and values to lead a multi-agency team to improve the care and support available to autistic adults. Social workers should also lead within the social work profession demonstrating best practice.

• lUnderstand the configuration of their local autism services and inter-agency referral protocols and procedures interagency referral protocols (or procedures) and the access points for services
• Work collectively with (self) advocates and fellow professionals services for autistic people
• Develop collective leadership in a multi-agency setting

Preventing and deescalating crises and behaviour that challenges

Autistic adults may experience ‘crises’ when they are distressed and are unable to manage this through their usual coping strategies. This may manifest in problematic behaviours, identified by carers involved in developing this Capabilities Statement as ‘hitting out’, ‘head butting’ or ‘having a meltdown’. Social workers who participated in the consultations (see Methodology section) described crises as ‘anything that creates anxiety or distress’ ranging from unplanned changes to care plans or routine everyday occurrences,and distressing news such as loss of benefits and support services, or changes in family circumstances. Crises also occur when the police become involved because an autistic adult has (mis)interpreted neurotypical norms (DoH, 2015) – for instance personal space boundaries and the differences between platonic and sexual relationships. This may lead to arrest, and encounter with the criminal justice system could be distressing for the autistic person.

Social workers should seek to prevent crises through care planning. This involves updating care plans, keeping accurate and accessible assessments about stressors and triggers, and direct work with autistic adults to identify de-escalating measures. Effective interventions, including mental health, should also be documented on social care records and social workers should advocate and promote least restrictive interventions.

Crises and behaviour that challenges may also be caused by the inability of services and professionals to develop suitable care plans. Current consensus is that behaviour that challenges is caused by a combination of psycho-social, developmental, and environmental factors:

‘[it] is more likely to occur in environments that are poorly organised and unable to respond well to the needs of the person. There is often a mismatch between the needs of [autistic] people with intellectual disabilities and the range of available, individualised packages of support that can respond to behavioural challenges.’ (Royal College of Psychiatry, 2016; p.9)

Drawing on social model approaches, social workers should engage with autistic adults and their carers to understand their triggers and care plans aimed at preventing these behaviours from arising should be co-produced with autistic adults and their family, friends and carers. Where people are experiencing mental distress, social workers should note that

‘Compulsory treatment in a hospital setting is rarely likely to be helpful for a person with autism, who may be very distressed by even minor changes in routine and is likely to find detention in hospital anxiety provoking. Sensitive, person-centred support in a familiar setting will usually be more helpful.’ (Mental Health Act 1983: Code of Practice (DoH, 2018; p. 209))

Values underpinning social work and behavior that challenges

Quality of life: following principles of  personalisation, care plans should seek to maximise quality of life

Safeguarding: people should be encouraged to take positive risks and their right to ‘unwise’ decision-making should be respected. However, the first principle is safeguarding them

Choice and control: people should have control of their services – this can be achieved through co-production and partnershipsLeast restrictive interventions: this should be the starting point for all interventions (including restraining people for their safety)

Equitable outcomes:  social work should address the health and social inequalities that may cause people to display behaviour that challenges

Adapted from Association of Directors of Adult Social Services,Local Government Association, NHS England (2015)

• Ensure that care plans follow the guidelines in ‘Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges’ (NICE, 2015)
• Be guided by the principle of prevention,social workers should work with autistic adults and their carers to prevent crises and/or behaviour that challenges
• Have a detailed Crisis Plan, includingrelevant information, de-escalation strategies, and knowledge of professional and social support.

Being responsible for self and ongoing learning

There is a recognised knowledge gap in social workers’ understanding of autism. Autistic adults who participated in the development of this Capabilities Statement reported that social workers who do not have knowledge of autism and/or engage in regular CPD may be ‘dangerous’ to them having their needs met. Thus regular CPD activities to improve knowledge and skills in autism is one key component of professionalism in social work with autistic adults. A second strand involves social workers fulfilling their professional duties – for instance managing their workload, completing tasks as requested and advising where this is not possible; andmeeting the expected standards of values and professionalism. Social work with autistic adults can be immensely rewarding, however it is also challenging. Consequently, professionals should seek regular supervision and allocate time for their CPD. This is essential for professional practice, for registration and for maintenance of wellbeing and resilience in the workplace. They should also maintain accountability to The Code of

Ethics for Social Work (BASW, 2014). On the part of employers and Practice Leaders, they should support social workers as stipulated, respectively, in the Standards for Employers of Social Workers (Local Government Association n.d) and Post-qualifying Standards for Social Work Practice Supervisors in Adult Social Care (Department of Health and Social Care, 2018).

• Seek and prepare for regular practice supervision
• Engage in critical reflection to understand the power inherent in their role and how this can be deployed alongside people to empower them
• Honestly and regularly appraise theircapabilities. This iincludes identifyinggaps and planning CPD to address these.

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Autistic Workers Often Avoid Disclosing Their Condition to HR. Here's Why

​Most workers with autism are comfortable talking about their condition with colleagues, but far fewer are open about it with someone in HR.

About 70 percent of autistic employees have discussed their condition with someone outside of HR, such as their manager or a trusted colleague, but just 30 percent disclosed their autism to HR, according to a survey of 985 workers with autism across eight countries conducted by consultant company auticon in Berlin.

Louise Stone, head of recruitment and community partnerships at auticon's Los Angeles office, wasn't surprised to learn that these employees do not formally tell their employers that they have autism.

"They feel like [disclosing their autism to HR] will negatively impact their employment," said Stone, who has autism. "Bringing HR into the conversation is scary because HR is who controls hiring and firing."

Stone explained that employees' decision to inform HR about their autism can be complicated. Many workers with this condition deal with social stigmas and fear being judged, misunderstood or fired for having it, despite the third outcome being illegal in the U.S.

[SHRM members-only how-to guide: How to Handle an Employee's Request for an ADA Accommodation ]

Some people with autism may want to disclose this information when applying for a job because they need specific accommodations during the application process, such as receiving interview questions in writing, or once hired, such as a quiet environment at work.

But many accommodations for workers with autism can easily be implemented without the need for HR's involvement, Stone noted. For example, providing agendas for meetings, written follow-ups and clear deadlines for assignments can be arranged by managers or co-workers—or even the employees themselves.

"If [autistic workers] can disclose to non-HR people and get these informal accommodations, there is less stress and all needs are still met," she said.

Finding the Right Job Is Key

Reports have shown that autistic professionals can be up to 140 percent more productive than employees who don't have autism—when they are properly matched to jobs.

However, finding the appropriate job can be stressful for these individuals. According to the auticon report:

• 42 percent of employed autistic professionals said finding the right job has been the most challenging part of their career. This rises to 48 percent among 18-to-24-year-old workers—many of whom have not yet found their career path.
• 35 percent said settling into a new organization has been the most challenging aspect of working life for them.
• 31 percent found the traditional corporate recruitment process to be the most demanding.

"The traditional recruitment process and typical workplace environment are not set up for the success of neurodivergent adults," Stone said.

She explained that key pillars of the recruitment process and an employee's success post-hire are often based on social skills, such as picking up on social cues and connecting with colleagues and managers. A lack of education among employers has caused many autistic individuals to be viewed as too direct, too literal or not engaged enough in the workplace to be hired or maintain employment.

As a result, many autistic people are unemployed—with some analysts estimating the unemployment rate of those with autism is as high as 85 percent in the U.S.

Eric Ascher, who has autism, struggled to land a job after graduating from college in 2016. He spent 18 months applying for jobs before he found an internship with RespectAbility, a fully remote nonprofit, that is open to hiring people with autism. This role eventually led to full-time employment with the organization.

"Those 18 months were the hardest of my life," Ascher said. "Luckily, I had parents who could financially support me while I looked for an opportunity that would be a good fit. I can only imagine how hard this situation is for lower-income autistic people."

Autistic Workers 'Mask' Their True Selves

The auticon survey also revealed that 85 percent of autistic workers enjoy their jobs, yet only 44 percent feel they can be their authentic selves at work.

"It is critically important that all people, including autistic people, can show up as their full authentic selves to work," Ascher said. "Having to alter yourself to conform is emotionally draining."

Many autistic workers feel the need to hide or disguise parts of themselves to better fit in with co-workers—a practice called masking . But masking can be physically and mentally exhausting, and it often leads to serious health consequences , such as depression, anxiety and autistic burnout.

Employers can help by informally asking employees if they need any accommodations early in the employment process. This can increase autistic workers' sense of belonging without making them feel pressured to formally inform HR about their condition, Stone said.

"Just like you would ask a new employee if they would prefer a Mac or a PC, or if they need a keyboard or ergonomic mouse," she said. "It would be best to have a list of things you can and typically offer, which could include options like standing desks, AI note-taking software, recording meetings or flexible work hours."

Ascher added that employers should want to do their best to create a comfortable environment for all workers, regardless of disability, "because less-stressed-out employees are more productive and will stay at your company longer."

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Personal Statement asking about diversity and inclusion: can I mention my involvement in the autism community?

So I’m not applying to any of the UC’s, but around 3-4 of the universities that I’m applying to require a personal statement. As part of it, they do ask about how you’ve contributed to inclusion and diversity. Now I’m an international student who currently lives in a pretty international environment so despite being a poc, I’ve never experienced racism or any sort of bias.

However, I have a brother with autism who I’ve been working hard with this past year because I’m currently unemployed due to covid and have a lot of time on my hands. I have talked a lot in my personal statements about how I want to be someone who advocates, includes and empowers people who are disadvantaged, including those with disabilities, in my field (microbiology).

I saw on another post how we shouldn’t talk about mental health, but what if I’m talking about how I helped my brother and how I’m trying to raise awareness in the community that autistic people are more than what they seem? That they’re extremely talented individuals that we need to nurture and empower? What do you all think in this case?

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Autism Personal Statements Samples For Students

12 samples of this type

No matter how high you rate your writing skills, it's always a good idea to check out a competently written Personal Statement example, especially when you're handling a sophisticated Autism topic. This is exactly the case when WowEssays.com catalog of sample Personal Statements on Autism will prove handy. Whether you need to brainstorm an original and meaningful Autism Personal Statement topic or look into the paper's structure or formatting peculiarities, our samples will provide you with the necessary material.

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Core Values, Beliefs & Goals

Core values.

You will often hear us talking about promoting Acceptance, Enrichment, Inspiration and Empowerment within the autism and Asperger communities and in all communities. This ties in with our mission and vision.

Accept – We strongly promote the unconditional acceptance of those on the autism spectrum. This includes self-acceptance and social acceptance. By accepting each spectrum traveler for who they are, where they are in the present moment, we are promoting both autism acceptance and autism awareness in a positive and respectful way.

Enrich – Our goal is to provide educational resources, programs and tools to improve and enhance life skills for those on the autism spectrum as well as their families, caregivers, therapists and teachers. We aspire to make life more meaningful and rewarding.

Inspire – We dedicate ourselves to being a positive and uplifting organization that encourages, promotes and celebrates success in all individuals. We believe each person on the autism spectrum has the opportunity to make a positive difference in this world.

Empower – We strive to empower individuals on the autism spectrum to achieve their highest quality of life academically, emotionally, financially, socially and spiritually.

While here at Autism Empowerment and while out in your daily life, we want you to know that you’ve found a community where you can feel that you are accepted for who you are, inspired to improve yourself, feel enriched by the information that you find and are empowered to advocate for yourself and live your best life possible.

• Individuals on the autistic / autism spectrum have the right to define themselves and not be defined by a label or stereotype.
• In order to bridge the gap we sometimes see in the autism community, we need to respect differences and value neurodiversity.
• We are not in competition with other organizations and believe in the power of positive collaboration and community.
• We are called to serve. When we step outside of ourselves to help others, amazing change can take place. 
• To promote acceptance of individuals and families within the Autism and Asperger communities. Come as you are, let your light shine!
• To accept and appreciate the complete spectrum of autism and serve all ages and stages of life.
• To promote acceptance of people with all abilities. Each of us is an amazing human being with gifts, talents and skills to share.
• To provide enrichment to the Autism and Asperger communities through educational and support resources and venues.

• To connect individuals on the autism spectrum with valuable resources and with each other.
• To empower individuals with autism to identify their strengths, gifts and talents and to celebrate their successes.
• To assist individuals with autism to identify challenges and implement meaningful coping strategies.
• To empower individuals and families impacted by autism to participate in advocacy.
• To provide opportunities for individuals with autism to inspire and mentor others on the autism spectrum.

The Autism Empowerment community is YOUR community. It is OUR community.

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UCAS personal statement - should DD talk about autism?

Sickdog · 22/10/2021 11:10

Hi DD is in the process of drafting her personal statement. We don't know whether she should mention her autism or not. Her autism is relevant in that DD has an unusual academic profile, and sequence of qualifications, that don't fit the expected academic path. Those differences are due to her autism so it's difficult to explain her history without expressly mentioning it. DD is hesitant as she doesn't want to focus on her autism and wants to be viewed and considered in the same light as a NT candidate. Any thoughts would be welcome!

When you say mention what do you mean? DS told them he was autistic but there was no focus on it in regard to his academic achievements.

@clockover the issue is that DD struggled with the first shot at sixth form due to anxiety and only finished one A level. She's now doing three new subjects. We're working on the basis that the Universities will want to know why it's taken DD to do 4 years to complete her A levels, and autism plays a large part in why that happened.

I would normally say it's completely up to the DC to mention it or not - my DS is ASD and hates talking about it - but I think she has to explain what went 'wrong' with her A levels. She doesn't need to dwell on it, but there's also an opportunity to take some positives out of it - thanks to having ASD I have developed coping strategies, am able to pick myself back up after disappointment and restrategise, etc etc I constantly have a battle with my DS over this too - I know he wants to be considered alongside NT people but he is not NT and there is lots of help, support and opportunities available to him to help support him that he will not avail himself of...

Isn’t this what the school reference is for? Anything that has hampered progress is usually advised to be put in the reference. My understanding is PS is only for positive things. The PS is for explaining her passion or reasons/motivations for applying for the course not her own personal history.

That's not what a personal statement should be.

She CAN mention her autism but not in the way you’re say. Personal statements are for why you want to study the course, why you’re passionate, why you’ve got the skills. If her autism fits here, then mention it. The teacher reference is where information like you’ve discussed should go. She’ll also disclose her autism elsewhere on the UCAS form.

She can tick the dsa box and mention her resilience in overcoming barriers in her ps (not that all will read it).

I've just looked at the UCAS website and this is what they say under "personal statement": "If there are any personal circumstances which have affected your educational performance, outline them in your personal statement. For example, this might be something that caused you to miss school - such as a physical or mental health condition, or caring for a family member". So it seems DD could talk about why she's taken 4 years to complete A levels, but the prevailing view on here is that she shouldn't. I take the point that the issue could be dealt with in the college reference, but DD moved sixth forms so the current sixth form won't really know what happened in her first attempt.

I don't fully understand here, forgive me though because I am from Scotland so different ststem but how can she be in sixth form if she has spent 4 years doing A level

Yes, I don’t fully understand either. Is your daughter now in her 20s if she’s been trying to do her A levels for 4 years?

I would suggest presenting it as overcoming adversity, as in she struggled first time round, but on second attempt was successful, because, despite the problems, she is determined and resilient and has gained coping skills. Then go on to say why she will make a good student, particularly in the subject she is applying for, and how her additional challenges will give her useful insights and strengths. I think Universities will be interested in her having thought through potential issues and her having a clear idea of how to address them, and perhaps additional strengths, including the maturity that comes from overcoming adversity, that she brings to the table. DD is dyslexic but, probably as a result, has developed a strong memory. She learns differently but just as well, which seemed useful to say. She was also able to talk about her strong interest in neuro diversity, and the reading she had done around this.

I would suggest presenting it as overcoming adversity, as in she struggled first time round, but on second attempt was successful, because, despite the problems, she is determined and resilient and has gained coping skills. This makes sense. Mention it but take the positive from it rather then simply using it to explain/excuse

Again this is something the school (college by now surely?) reference should talk about. Eg 'Dd came to us having had MH difficulties as a result of x which had impacted on her previous study at school. However in the short time that we have known her she has demonstrated that she has overcome these adversities etc etc' She could mention in her own PS but make it relate to her ability to study x at uni and talk about her determination and resilience.

I agree that she should mention it in her pS but it also needs to be detailed in her reference.

Thanks for all the replies. DD is now almost 20. She has an EHCP so was given funding for a "second try" at A levels as the Plan now covers young people at up to the age of 25. DD is really grateful to have another chance and has put everything into it, with three high predicted grades. She already has one A grade at A level from the first attempt at sixth form so is aiming for fairly competitive courses. We're just trying to strike the right balance between explaining the situation but not trying to use her autism as any form of excuse. I'll ask DD to speak to her tutor about including something in the college reference. Thanks for the feedback, it's been very helpful.

Oh I did mean to add that I have autism but I didn’t mention it in my UCAS statement. I also took 2 years to finish a 1 year college course (mental breakdown) but I still got offered a place at a RG University. Sorry if that sounds like bragging or making it sound like it should be easy for your daughter if it’s not. If your dd WANTS to mention it in her statement she can. She shouldn’t feel like she has to if she doesn’t want to.

Re-read Needmoresleep s post (Fri 22-Oct-21 13:42:07) it's absolutely spot on. DS (ASD and financially strapped background) explained his unusual educational pathway, qualifications and gaps without any sort of apology or excuse, just here's what I've done so far, here's why I did it a very different way from many, and here's what I've learnt about my strengths and weaknesses and how best I learn, and here's why I want to do this course, what I'm passionate about, and what I want to do with it all. I'm now a mature student myself (despite a lack of any exams) and in earlier educational climate's wouldn't have stood a chance of getting a university education. In the current climate and regardless of the rights and wrongs, it is a business. Obviously it depends exactly what you're applying for and where, but frankly they want bums on seats, and any student whose likely to turn up regularly, and better still apply themselves, is in with a good chance.

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