presentation of autism in females

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Presentation of Autism Spectrum Disorder in Females: Diagnostic Complexities and Implications for Clinicians

• By: Jessica Scher Lisa, PsyD Harry Voulgarakis, PhD, BCBA St. Joseph’s College
• April 1st, 2020
• assessment , behaviors , diagnosis , females , research , Spring 2020 Issue
• 10549    1

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by pervasive deficits in social communication and patterns of restricted, repetitive, stereotyped behaviors and interests (American Psychiatric Association, 2013). Beyond the […]

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by pervasive deficits in social communication and patterns of restricted, repetitive, stereotyped behaviors and interests (American Psychiatric Association, 2013). Beyond the main diagnostic criteria, however, there is considerable heterogeneity in the symptom presentations that is demonstrated by people with ASD, including severity, language, cognitive skills, and related deficits (Evans et al, 2018). Regarding sex differences, it has been well established that ASD is diagnosed more often in males than in females, with recent estimates suggesting a 3:3:1 ratio (Hull & Mandy, 2017). Despite the fact that this is well known, there is considerable uncertainty about the nature of this sex discrepancy and how it relates to the ASD diagnostic assessment practice (Evans et al, 2018). Additionally, it has been widely accepted that males and females with ASD present differently, which has implications for the sex discrepancy in diagnostic practices, thus females are generally under-identified (Evans et al, 2018).

The fact that females with ASD are under-identified and often overlooked can be due to a number of factors. First, they often don’t fit the “classic” presentation that is most often associated with the ASD diagnosis; specifically, there is a distinct ASD female phenotype that looks dissimilar to the typical ASD male presentation. Females with ASD tend to present with less restricted interests and repetitive behaviors (RRBs) (Supekar and Menon, 2015), thus standing out less both in society, as well as on screening and diagnostic measures. Fewer RRBs makes ASD appear in a different way, often more subtle, than what is considered to be the norm. It is also important to note that evidence suggests that even when females with ASD are identified, they receive their diagnosis (and related support) later than equivalent males with ASD (Giarelli et al, 2010). The implications for under- or late-identification are enormous and deserve empirical attention in an effort to improve diagnostic methods for ASD in females.

Harry Voulgarakis, PhD, BCBA

Jessica Scher Lisa, PsyD

While no consistent, reliable differences have been found between sex and core ASD symptoms (e.g. Bolte et al, 2011; Holzmann et al, 2007; Mandy et al, 2012), it has been well documented that compared to males, females with ASD that are undiagnosed or are diagnosed at a later age generally present with less severe ASD symptoms and more intact language and cognitive skills (Begeer et al, 2013; Giarelli et al, 2010; Rutherford et al, 2016). Research has also noted that females with ASD may be better able to compensate for symptoms despite having core deficits associated with ASD (Livingston & Happe, 2017; Hull et al, 2017). There has been some suggestion that females must exhibit more severe symptoms, impairment, or co-occurring problems in order to receive diagnoses of ASD (Evans et al, 2018). This finding is due to an analysis of previous research that demonstrates the following: females with ASD perform better on measures of nonverbal communication (which may mask other symptoms), females with ASD face more social, friendship, and language demands than males with ASD, and that females with ASD can exhibit patters of restricted interests and repetitive behaviors, as well as social and communicative problems that are deemed more socially acceptable as compared to the patterns seen in males with ASD (Lai et al, 2015; Rynkiewicz et al, 2016; Dean et al, 2014). This theory also accounts for the findings that females with ASD in general present with more severe behavioral, emotional, and cognitive problems compared to males (Frazier, et al, 2014; Holtmann et al, 2007; Horiuchi et al, 2014; Stacy et al, 2014). Further, Hiller and colleagues (2014) found that females were more likely to show an ability to integrate non-verbal and verbal behaviors, and initiate friendships, and exhibited less restricted interests. Teachers reported fewer concerns for females with ASD than for males, including concerns about behaviors and social skills. These data support the idea that that females with ASD may “look” different from the considerable “classic” presentation of ASD and may also present as less impaired in an academic setting.

The vast differences associated with gender presentation in ASD require that clinicians involved in diagnostic work become more cognizant of these broader phenotypes and adjust their assessment practices accordingly to better detect females presenting with atypical symptoms that still fall on the autism spectrum. Notably, many common diagnostic tools lack sensitivity to such a presentation. To that end, it is important to recognize that generally speaking, the evidence base, and hence the diagnostic criteria for ASD in itself comes from research among male-predominant samples (e.g. Edwards et al, 2012; Watkins et al, 2014). Therefore, while the efforts to study this area further are prominent, it is important to be mindful of the fact that existing assessment tools and diagnostic criteria likely contain sex/gender bias (Evans et al, 2018). Without addressing the neurological and diagnostic challenges pertaining to these sex/gender issues, any research in this area will be influenced by the underlying problem of not knowing how ASD should be defined and diagnosed in males as compared to females (Lai et al, 2015).

Currently, the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) is arguably the most commonly relied upon diagnostic instrument for ASD. The ADOS-2 is a semi-structured observational assessment designed to evaluate aspects of communication, social interaction, and stereotyped behaviors and restricted interests (Lord et al, 2000; 2012). In contrast to what has been documented with regard to the strong differences in the prevalence of ASD, differences between the sexes in the phenotypic presentation of ASD have been found to be much smaller in size, with inconsistencies in the findings with regard to severity level of the core symptoms, as well as age and general level of functioning. For example, some studies have found no significant differences between sexes with regard to the behavioral presentation of ASD on the ADOS (e.g. Lord et al., 2000; Lord et al., 2012, Ratto et al, 2017), while others have reported some differences (e.g. Lai et al., 2015).

In order to examine these inconclusive findings further, Tillman et al (2018) looked at data containing 2684 individuals with ASD from over 100 different sites across 37 countries. Children and adults were administered one of four ADOS modules (modules are determined by expressive language level). The Autism Diagnostic Interview, Revised (ADI-R) was also administered as well as a general intellectual ability instrument, such as the Wechsler Intelligence Scale for Children, or a different measure depending on age and verbal capabilities. Effects of sex were determined after excluding non-verbal IQ as a predictor. No main effect of sex was found for ADOS symptom severity, or on the specific ADOS subscales. Females showed lower scores on the RRB scale with increasing age. This result is similar to previous meta-analytic research on small-scale studies as well as large-scale studies (Van Wijngaarden-Cremers et al, 2014; Mandy et al, 2012, Supekar & Menon, 2015; Wilson et al, 2016; Charman et al., 2017). The researchers concluded that this adds to the current body of literature that supports the notion that females with ASD show lower levels of RRBs than males, but exhibit a more similar autistic phenotype to boys in relation to social communication deficits across ages (Tillman et al, 2018). Thus, it is possible to surmise that females with ASD are being under-identified as a result of exhibiting fewer RRBs. Notably, research has found that clinicians are hesitant to diagnose ASD without the presence of RRB (Mandy et al, 2012), as the diagnosis of ASD in the DSM-5 requires at least two types of RRBs. Lai et al. (2015) made the case that females with ASD may simply be exhibiting different RRBs rather than fewer, and it is possible that these less common forms of RRBs are being missed during diagnostic assessments.

Understanding the phenotypic differences in the presentation of autism is critical for diagnosticians for several reasons. It is crucial to understand that aspects of the diagnostic criteria for ASD may present on other ways in females though not be elevated on standard measure scales. As a result, those who do not receive an appropriate diagnosis will subsequently not receive an appropriate intervention. Beyond the obvious concern associated with females on the autism spectrum not receiving intervention associated with their autism symptomatology, there are a range of other mental health concerns that may dually go unaddressed. Higher functioning adolescents with ASD, which is often the presentation consistent with females that get “missed” in the diagnostic process, are at greater risk for developing depression (Greenlee et al, 2016) and anxiety (Steensel, Bogels, & Dirksen, 2012). Adults with high-functioning ASD are also at increased risk for suicidality (Hedley et al, 2017). More recent, emerging research suggests that while those with ASD may be able to mask their symptoms the majority of the day and thus not reach the diagnostic threshold in scandalized measures, doing so causes them significant distress and puts them at increased risks for such co-occurring mental health concerns.

The under-diagnosis of ASD in females with ASD lends itself to a population of women who end up wondering “what is wrong” with them. Females who do not have the opportunity to understand themselves in the context of neurodiversity tend to waste time and efforts on imitating and trying to fit-in (Bargiela et al, 2016). They are at far greater risk of bullying, as well as being taken advantage of socially, with subtle difficulties in perceiving and responding appropriately to social cues rendering them inept in certain situations that require a degree of social assimilation. These females have missed out on the benefits of early intervention, most often in the social realm, and can be plagued with identity issues later in life as they try to play catch-up in light of a new diagnosis. The timely identification of ASD can mitigate some of these risks and problems by improving the quality of life, increasing access to services, reducing self-criticism, and helping to foster a positive sense of identity. As such, diagnostic experts have a responsibility to continue to stay abreast of research developing in this area and adjusting their assessment practices accordingly.

Drs. Scher Lisa and Voulgarakis are Assistant Professors in the Department of Child Study at Saint Joseph’s College, New York. They are both also clinicians in private practice. You can find more information about their respective practices at www.drjessicascherlisa.com and www.drharryv.com .

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Evans, S. C., Boan, A. D., Bradley, C., & Carpenter, L. A. (2018). Sex/Gender Differences in Screening for Autism Spectrum Disorder: Implications for Evidence-Based Assessment. Journal of Clinical Child & Adolescent Psychology, 48(6), 840–854. doi: 10.1080/15374416.2018.1437734

Giarelli, E., Wiggins, L.D., Rice, C. E., Levy, S. E., Kirby, R. S., Pinto-Martin, J., et al. (2010). Sex differences in the evaluation and diagnosis of autism spectrum disorders among children. Disability and Health Journal , 3 (2), 107-116. doi:10.1016/jdhjo.2009.07.001.

Hiller, R. M., Young, R. L., & Weber, N. (2014). Sex Differences in Autism Spectrum Disorder based on DSM-5 Criteria: Evidence from Clinician and Teacher Reporting. Journal of Abnormal Child Psychology, 42(8), 1381–1393. doi: 10.1007/s10802-014-9881-x

Holtmann, M., Bolte, S., & Poustka, F. (2007). Autism spectrum disorders: Sex differences in autistic behavior domains and coexisting psychopathology. Developmental Medicine & Child Neurology, 49, 361-366. doi: 10.1111/dmcn.2007.49.issue-5

Horiuchi, F., Oka, Y., Uno, H., Kawabe, K., Okada, F., Saito, I., Ueno, S. I. (2014). Age-and sex-related emotional and behavioral problems in children with autism spectrum disorders: Comparison with control children. Psychiatry and Clinical Neurosciences, 68, 542-550. doi:10.1111/psc.12164

Hull, L., Petrides, K.V., Allison, C., Smith, P., Baron-Cohen, S., Lai, M.C., & Mandy, W. (2017). “Putting on my best normal”: Social camouflaging in adults with autism spectrum conditions. Journal of Autism and Developmental Disorders, 47, 2519-2534. doi:10.1007/s10803-017-3166-5

Lai, M.C., Lombardo, M., Auyeung, B., Chakrabarti, B., & Baron-Cohen, S. (2015). Sex/gender differences and autism: Setting the scene for future research. Journal of the American Academy of Child and Adolescent Psychiatry, 54, 11-24.

Livingston, L.A., & Happe, F. (2017). Conceptualizing compensation in neurodevelopmental disorders: Reflections from autism spectrum disorder. Neuroscience & Behavioral Reviews, 80, 729-742. doi: 10.1016/j. neubiorev.2017.06.005

Lord, C., Risi, S., Lambrecht, L., Cook, E.H., Leventhal, B.L., DiLavore, P.C. et al (2000). The autism diagnostic observation schedule – generic: A standard measure of social communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders, 30(3), 205-223.

Lord, C., Rutter, M., DiLavore, P.C., Risi, S., Gotham, K., & Bishop, S. (2012). Autism diagnostic observation schedule, Second edition (ADOS-2) Manual (Part I): Modules 1-4. Torrance: CA: western Psychological Services.

Mandy, W. P., Chilvers, R., Chowdhury, U., Salter, G., Seigal, A., & Skuse, D. (2012). Sex differences in autism spectrum disorder: Evidence from a large sample of children and adolescents. Journal of Autism and Developmental Disorders, 42, 1304-1313. doi: 1007/s10803-011-1356-0

Ratto, A.B., Kenworthy, L. Yerys, B.E., Bascom, J., Wieckowski, A.T., White, S., et al (2017). What about the girls? Sex-based differences in autistic traits and adaptive skills. Journal of Autism and Developmental Disorders, 48, 1698-1711.

Rutherford, M., McKenzie, K., Johnson, T., Catchpole, C., O’Hare, A., McClure, I., Murray, A. (2016). Gender ratio in a clinical population sample, age of diagnosis and duration of assessment in children and adults with autism spectrum disorder. Autism, 20, 628-634. doi10.1177/1362361315617879

Supekar, K., Menon, V. (2015). Sex differences in structural organization of motor systems and their dissociable links with repetitive/restricted behaviors in children with autism. Super and Menon Molecular Autism, 6, 50 doi: 10.1186/s13229-015-0042-z.

Tillman, J., Ashwood, K., Absoud, M., olte, S., Bonnet-Brilhalut, F., Buitelaar, J.K. et al (2018). Evaluation sex and age differences in ADI-R and ADOS scores in a large European Multi-site sample of individuals with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(7), 2490-2505.

Van Wijngaarden-Cremers, P.J., van Eeten, E., Groen, W.B., Van Deurzen, P.A., Oosterling, I.J., & Van der Gaag, R.J. (2014). Gender and age differences in the core triad of impariments in autism spectrum disorders: A systematic review and meta-analysis. Journal of Autism and Developmental Disorders, 44(3), 627-635.

Wilson, C.E., Murphy, C.M., McAlonan, G., Robertson, D.M., Spain, D., Haywayrd, H. et al (2016) Does sex influence the diagnostic evaluation of autism spectrum disorder in adults? autism, 20(7), 808-819.

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Frequently asked questions.

Autism spectrum disorder  (ASD) is a developmental disability that is usually diagnosed at or before the age of 3. While people of any sex and gender can be autistic, it is common for people assigned female at birth  to be diagnosed with ASD later in life. Many autistic women and nonbinary people are not diagnosed until they reach adulthood.

According to the Centers for Disease Control and Prevention (CDC), the prevalence of ASD in the United States in 2020 was 3.8 higher for boys than girls—or about 4% of boys and 1% of girls aged 8 years old.

Autistic women might be diagnosed later in life for a few reasons, including because the set of autistic traits listed by the American Psychiatric Association most accurately reflect the realities of autistic boys and men. Girls and women with ASD are also socialized to be better at masking, or hiding their autistic traits.

Sex and Gender

People assigned female at birth are not all girls/women. Women, nonbinary people, and trans men all face certain challenges in getting an autism diagnosis compared to cisgender men. 

While this article is focused on the challenges faced by women and girls, it should be noted that people who are nonbinary or gender non-conforming face similar challenges with autism diagnosis. 

This article will go over how autism might be different along gender lines, and what some of the challenges are in diagnosing autism in girls and women. 

Illustration by Zoe Hansen for Verywell Health

Common Traits of Autism

People of all sexes, genders , races, ethnicities, and backgrounds can be autistic. Just like autism is a spectrum, autistic people are a varied group. The mix of traits that each autistic person displays, how they experience and interact with the world, as well as how much support they need, will vary.

There is also evidence that the traits of autism can look different in women than it does in men, which may partly explain why there is a gap in early diagnosis for autistic girls.

The most common signs of autism include:

• Social and communication differences
• Repetitive behaviors
• Highly specific interests
• Sensory sensitivity to light, sound, or touch

The criteria for diagnosing autism have changed over time. In 2013, several categories of autism—including Asperger syndrome and pervasive developmental disorder not otherwise specified—were removed from the "Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition" (DSM-5).

To make a formal diagnosis of autism according to the DSM-5, the traits must have been present before the age of 3—even if the diagnosis is not made until much later in a person's life.

First-Person Language

Many people diagnosed with autism spectrum disorder prefer using identity-first language rather than person-first language. For example, they may prefer saying “an autistic person" rather than “a person who has autism.”

Communication Differences

To be diagnosed with autism, a person will have differences concerning communication. There is some evidence that autistic girls and women might be better at "studying" their peers to learn about neurotypical socializing and can imitate these behaviors, or mask, to try to fit in.

Some of the most common  speech-related differences  autistic people have include:

• Repetitive use of language (e.g., repeating phrases from TV or the internet, using the same words in the same way over and over again, etc.)
• Flat prosody (e.g., vocalization without tone changes)
• Difficulty with picking up speech patterns and body language signifying humor, sarcasm, etc
• Being non-verbal some or all of the time (e.g., communicating primarily with sign language or an augmentative and alternative communication (AAC) device)

In addition to differences with speech and body language, autistic people have challenges with social communication:

• Inability to distinguish between platonic and romantic conversation
• Difficulty discussing anything except a favored topic (e.g., will only talk about a favorite TV show)
• Difficulty determining when it is or is not appropriate to speak, ask questions, or participate in a social group
• Speaking quickly, loudly, and frequently in partnered or group settings

Behavioral Differences

Autistic behaviors are not always easy to spot, depending on their frequency and intensity. There is also evidence that autistic girls may have more socially acceptable behaviors or are better at hiding these behaviors than boys, which makes diagnosis harder.

Common autistic behaviors can include:

• Stimming . Movements and sounds autistic people make to self-calm (e.g., rocking, humming, pacing, or repeating phrases). Some autistic people stim by touching certain textures or listening to certain sounds.
• Meltdowns . These intense emotional and physical reactions generally occur when an autistic person gets overwhelmed and is feeling panicky or stressed.
• Aggressive or self-harming behavior. Some, but not all, autistic people can display self-injuring behaviors, particularly during meltdowns. They may also do aggressive behaviors like hitting or throwing objects when they are overloaded.
• Preference for solitude or lack of interest in others' social overtures. Many autistic people are quite happy on their own and often need solitary time to recharge. Many autistic people who are interested in socializing still find it difficult to form and/or maintain social relationships with neurotypical people.

Sensory Differences

When the criteria for autism changed in 2013, the DSM-5 added a new set of traits to the list that considered sensory differences. The update included an autistic person's increased sensitivity to or interest in sensory factors in their environment like pain, temperature, sounds, textures, light, and movement.

Most autistic people have sensory sensitivities—though what they are and how severe they are will vary. Autistic people may find some sounds incredibly overstimulating—even painful. Other people seek out certain textures that they find soothing and enjoyable.

For example, an autistic person might:

• Not be able to tolerate the feeling of their hair on their neck because it's overstimulating or find repeatedly playing with their hair to be soothing
• Be overloaded by the sound of a hair dryer or be calmed by the "white noise" it generates

Some autistic people also experience understimulation, a feeling of boredom, discomfort, and stagnancy that can grow until it becomes painful. Dancing, listening to loud music, watching an interesting video, or playing a game can all help with understimulation.

Autistic people may seek out sensory stimulation and comfort through food or drink. Some autistic people have a specific (and often short) list of foods that they are always comfortable eating. These foods are referred to as "safe foods." Depending on how restrictive their eating requirements are, it can be difficult for autistic people to get all their necessary nutrients and calories.

Eating disorders such as avoidant-restrictive food intake disorder (ARFID) are conditions that often co-occur with being autistic. While ARFID is not about weight and body image, it can lead to weight loss. On the surface, it can easily look like more well-known eating disorders like anorexia or bulimia nervosa.

Sometimes, autistic girls and women are mistakenly diagnosed with anorexia nervosa (AN) because of their restrictive eating patterns. However, it's also possible for autistic people to have eating disorders other than ARFID, including AN.

Autism and Self-Care

Autistic people often have difficulty with motor skills and planning actions ( executive function ), which can make self-care tasks challenging.

While it's true that some autistic girls and women are not interested in nor understand the gendered social expectations attached to activities like putting on makeup and shaving body hair, other autistic people may want to partake but struggle because of the complex planning and motor skills needed to do them. Autistic people of all genders may also find it difficult to brush and shower daily. When you add sensory sensitivities to the mix, an autistic person may have a very hard time doing something as "simple" as washing their hair in the shower.

Autistic people who menstruate may also find managing their periods extremely difficult, since there are many changes involved that can be overstimulating (e.g., painful cramps, new smells, the sight of blood, the discomfort of wearing a pad, tampon, or cup), including having to change their routines (e.g., needing to change pads/tampons, having to avoid certain activities or certain safe foods).

Understanding Autism in Women

Some researchers have asserted that autism is a manifestation of the "extreme male brain (EMB)." The foundation of the EMB autism theory is that lack of empathy is essential to being autistic and that testosterone impairs cognitive empathy, but both theories have been proven false. While there does seem to be a difference in the number of women and girls diagnosed as autistic compared to the number of males, the so-called "female protective effect" is still being explored by researchers.

Many autistic people are over-empathetic to people, animals, and non-living objects, especially autistic women and nonbinary people who are socialized as such. Autistic people often just do not express, feel, or display empathy in ways that allistic (non-autistic) people are used to recognizing. 

In recent years, it has become clear that autism is underdiagnosed in people who aren't cisgender men. The possible reasons for the disparity include:

• Children who identify as girls are more likely to internalize  anxiety  related to autism than children who identify as boys. Instead of behaving aggressively, they are more likely to become depressed or anti-social.
• Many cultures make it acceptable for girls to be "shy" whereas shyness is less acceptable in boys.
• When autistic girls focus exclusively on a particular interest, they are more likely than boys to choose a “socially acceptable” fascination such as unicorns or dolls.

Researchers are still trying to understand how autism is different for girls and women. However, the lack of gender diversity in diagnosed autistic people is a hindrance for scientists, as is the widespread delegitimization of thoughtful self-diagnosis.

Autistic women, nonbinary people, and all people of color are less likely to have professional diagnoses due to discrimination, being underinsured, or not possessing the hundreds to thousands of dollars a professional diagnosis costs. Until things change, there will continue to be a lack of gender diversity in studies on, and knowledge about, autistic people. 

Masking/Camouflaging

Some research has suggested that autistic girls might be more likely than boys to intentionally or unintentionally hide or cover up their traits. This is called camouflaging or, more commonly, masking.

For example, autistic girls might be better at:

• Mimicking their peers' facial expressions, vocal tones, and other behaviors, which can make it harder for providers and caregivers to spot the signs of autism
• Using resources like TV, social media, and their observations of others to learn about social rules and practice them
• Forcing themselves to make eye contact and suppress autistic behaviors such as hand-flapping

While girls on the spectrum might be better than boys at masking, doing so takes considerable effort to maintain, and autistic girls often have trouble forming and maintaining peer relationships with allistic (non-autistic) people. Finding community with other autistic and neurodivergent people can be a homecoming experience for many people.

It is very important that everyone, especially marginalized people, have people around them who they can relate with and who understand them. Many adults coming into their autistic identity are discovering such community online and in person.

Long term masking is dangerous as it will always lead to autistic burnout. Autistic burnout is an intense, chronic experience of physical, mental, and emotional exhaustion that is often accompanied by a loss of skills and a lower tolerance to sensory stimuli. Autistic women and nonbinary people are most at risk for burnout as well as the co-occurring depression, anxiety, and suicidal ideation.

Suicide Prevention Hotline

If you or someone you know are having suicidal thoughts, dial  988  to contact the  988 Suicide & Crisis Lifeline  and connect with a trained counselor. For more mental health resources, see our  National Helpline Database.

Co-occuring Conditions

Co-occuring conditions are diagnoses that are commonly given in addition to a main diagnosis. Research suggests that co-occurring conditions are more common with autistic girls than boys. Co-occurring conditions are also more likely when a person is diagnosed with autism at a later age, as they most likely have not received the care, understanding, and support they've needed their whole lives.

Some common co-occurring conditions in autistic girls and women include:

• Attention deficit hyperactivity disorder (ADHD)
• Anorexia nervosa, ARFID and other eating disorders
• Obsessive-compulsive disorder (OCD)
• Tic disorders
• Sleep disorders

There is no proven  cause of autism , though being autistic tends to run in families. Thankfully, it is not necessary to discover why people are autistic. As autistic self-advocacy has become more prominent, autistic advocates have begun pushing back against the idea that autism is a disease or syndrome that needs a cure or research done concerning its origin.

Autistic advocates point to the ongoing field of eugenics that shows that when marginalized traits have their causes known, they are systematically eradicated via infanticide or genetic selection. We see this phenomenon happening today with the population of people with Down Syndrome being nearly zero due to medical intervention in multiple European countries.

Finding the origin of autism will not better the lives of autistic people and actually endangers them. The search for the "cause" of autism is inextricably linked to the search for a cure, and both manifest in deadly ways for autistic people, as seen with the many parents who have fed their autistic children bleach in order to cure them.

It is more important for loved ones of autistic people to seek to learn about autistic people and to learn from autistic adults, advocates, and communities about what is best for them.

For people wanting to support autistic populations at large, housing instability and homelessness, economic insecurity, and lack of access to medical, dental, and mental health care are some of the prevailing issues autistic people face that need more focus. Research and funding needs to be directed at these disparities as well as organizations and systems aiming to rectify them.

There is no single medical test for autism spectrum disorder. The diagnosis is based on observations and specific screening tools.

A child’s caregivers will usually fill out a  variety of questionnaires  about their child's infancy and toddlerhood and respond to questions about their child's development, behavior, and skills. Healthcare professionals may ask this of adults seeking diagnoses as well. Providers can also use hands-on and observational tools to see if a person meets the criteria for autism and whether they have any co-occurring conditions.

According to the Centers for Disease Control and Prevention (CDC), about 1 in 54 American children are autistic—and only about 1 in 4  autistic children are girls . While the 1-to-4 ratio is considered accurate, researchers have found that the ratio might actually be closer to 1-to-3.

The difference comes in part from the "gold standard" diagnostic tools that primarily reflect the autistic experiences of men and boys. Autistic adults  are often diagnosed by psychologists and psychiatrists with strong expertise in autism. 

Self-Diagnosis

Getting professionally diagnosed with autism as an adult can be a time-consuming and costly process. For marginalized communities, including women, self-diagnosis is the only option when placed against the cost of a professional diagnosis. Due to growing awareness of this disparity, self-diagnosis is becoming more accepted within the autistic community. 

There is no cure for autism but there are therapies and resources available to help autistic people.  While some them need to be prescribed by a provider, others are behavioral and/or developmental and can be provided by a therapist, caregiver, or even something an autistic person can undertake on their own. 

There is no "best" treatment for autism. Some possible treatments for autism include:

• Speech therapy
• Play therapy
• Social skills therapy
• Occupational therapy
• Developmental therapies such as Floortime , SCERTS , and relationship development intervention (RDI)
• Medications such as Risperdal (risperidone) or selective serotonin receptor inhibitors (SSRIs) to help with specific symptoms
• Applied Behavioral Analysis

Applied Behavioral Analysis (ABA) is endorsed by scientific organizations as the premier therapy for autistic people, but autistic people and self-advocates say otherwise. Opposition to ABA is grounded in the fact that the therapy aims to make autistic people behave like allistic people, and in that autistic people who undergo ABA develop post-traumatic stress symptoms correlating with the treatment.

People who are diagnosed with autism as adults often have low support needs (what used to be called “high functioning”) but that does not mean they would not benefit from having support. These people are also likely to have been masking for years or decades and might need more support when they stop masking or reach burnout.

Autistic adults often seek support on their own, like talk therapy. Some people find social skills coaching,  sensory integration therapy , and support groups with other autistic adults helpful. 

Autism in women and girls is underdiagnosed and/or diagnosed at a later age. There are some possible reasons for the disparity. 

The basis for diagnosing autism is often skewed toward behaviors that are more common in boys. Some evidence suggests that girls might be better at masking, hiding autistic behaviors, or are more likely to have “socially acceptable" special interests.

It’s not uncommon for women to only find out they are autistic as adults; however, the process of getting a formal diagnosis as an adult can be timely and costly. Autistic women are also more likely to have other mental health conditions including anxiety, an eating disorder, and obsessive-compulsive disorder.

Getting support can make a positive difference at any age for autistic people, though earlier intervention is ideal.

The primary traits of autism include difficulties with speech and social communication, sensory sensitivities, and repetitive behaviors. Autistic people may also have trouble expressing their ideas and emotions, and struggle with understanding others' points of view.

Because it is a spectrum disorder, autism can look different in every individual, and traits can range in presentation and intensity.

According to the official diagnostic criteria, signs of autism must appear before the age of 3. However, when someone is very good at masking or hiding their autistic traits, autism may not be diagnosed until later.

Autism is not a degenerative disease. In general, people with autism build skills as they get older. In some cases, however, co-occurring issues such as anxiety or autistic burnout can get in the way of progress and even cause skill regression. In addition, some issues such as social communication differences can become more of a problem as a child grows up.

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Maenner MJ, Warren Z, Ashley Robinson Williams, et al. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020 . 2023;72(2):1-14. doi:10.15585/mmwr.ss7202a1

Hull L, Petrides KV, Mandy W. The female autism phenotype and camouflaging: a narrative review.   Rev J Autism Dev Disord . 2020;7(4):306-317. doi:10.1007/s40489-020-00197-9

American Psychiatric Association. Diagnostic and statistical manual of mental disorders  (5th ed., text rev. ). doi:10.1176/appi.books.9780890425787

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Rødgaard EM, Jensen K, Miskowiak KW, Mottron L. Autism comorbidities show elevated female-to-male odds ratios and are associated with the age of first autism diagnosis . Acta Psychiatr Scand . 2021;144(5):475-486. doi:10.1111/acps.13345

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Centers for Disease Control and Prevention. Treatment and intervention for autism spectrum disorder .

By Lisa Jo Rudy Rudy is a writer, consultant, author, and advocate who specializes in autism. Her work has appeared in The New York Times and Autism Parenting Magazine.

Understanding autism

Women and girls, autism in women and girls, rates of autism prevalence suggest that boys are, on average, 4 times more likely to have autism than girls..

But this figure may hide the true incidence of autism in girls and women, with some estimates ranging from 7:1 to as low as 2:1 (that is, 2 boys for every girl). Parents with daughters on the spectrum will often share frustrating tales of how difficult it was to get a proper diagnosis for their daughters, while many autistic women did not receive diagnoses until adulthood .

Why does autism seem more common in males?

Being female does appear to protect the brain from many developmental disabilities, not just autism. There is emerging evidence that girls with autism need more extreme genetic mutations than boys to develop autism.

However, there is a growing body of work that indicates that autism just presents differently in girls and therefore often goes unrecognised, especially in verbally fluent girls with normal intelligence. Girls with autism also appear to be better at ‘camouflaging’ their symptoms in order to fit in.

With the diagnostic criteria for ASD based largely in how autism presents in males, girls can often ‘slip under the radar’ or get misdiagnosed. Girls with ASD seem to have less restricted and repetitive behaviours than boys, but it’s also possible that some of these behaviours go unrecognised — for example, an obsessive interest in collecting dolls may be misinterpreted as pretend play.

What does autism look like in girls?

Although every child with autism is different, here are some common characteristics in girls with autism:

• A special interest in animals, music, art, and literature
• A strong imagination (might escape into the worlds of nature or fiction)
• A desire to arrange and organise objects
• Not wanting to play cooperatively with female peers (for example, wanting to dictate the rules of play or preferring to play alone to maintain control)
• A tendency to ‘mimic’ others in social situations in order to blend in
• An ability to hold their emotions in check at school, but be prone to meltdowns or explosive behaviour at home
• Strong sensory sensitivities, especially to sounds and touch (for example; clothing tags, socks or even deodorant).

For autistic girls to thrive, it’s important they have access to a timely and accurate diagnosis, and the informed supports that come with it. A delayed or missed diagnosis can impede their education and development, as well as their social and community participation.

While boys with autism are more likely to have outwardly challenging behaviours, (indicating underlying issues, such as anxiety) girls with autism are more vulnerable to internalising problems.

As our understanding of how autism affects females is still emerging, it is important parents and professionals alike stay updated on the best ways to specifically support girls and women on the spectrum.

Helpful resources

“We always knew our daughter was different. She has a cousin (boy) who is autistic but presents very differently”

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Autistic women and girls

More women and girls than ever before are discovering that they are autistic. Many had been missed or misdiagnosed due to outdated stereotypes about autism. But that is slowly changing.

In the past, it was assumed that autistic people were overwhelmingly men and boys, and only very rarely women and girls. This is wrong. There are many women, girls and non-binary people on the autism spectrum.

Although we now know much more about the experiences of autistic women and girls, society's understanding of autism has been limited by outdated stereotypes and incorrect assumptions. Although autism research and professional practice are slowly catching up to the realities of life for autistic women and girls, many barriers to diagnosis and support remain. 

Does autism present differently in women and girls?

It is important that autistic women and girls receive a diagnosis (or recognise that they are autistic) so they can understand themselves and access support. However, because of stereotyped ideas about what autism looks like and who can be autistic, many autistic women and girls struggle to get a diagnosis, receive a diagnosis late in life or are misdiagnosed with conditions other than autism. 

Autistic characteristics in women and girls may differ from those of other autistic people. They might seem to have fewer social difficulties than autistic men and boys, but this could be because they are more likely to 'mask' their autistic traits (though the stress of doing so can result in anxiety and overwhelm). At school, autistic girls may be more likely to be part of a friendship group and this could be a reason that teachers don't notice their differences. They may also be missed if their academic achievement masks difficulties they are facing in other areas. 

Some of the core characteristics of autism are having ‘repetitive behaviours’ and highly-focused interests. Stereotyped examples of these include rocking backwards and forwards, and a fascination with trains. However, in autistic women and girls these behaviours and interests may be similar to those of non-autistic women and girls, such as twirling hair and reading books, and as such may go unnoticed despite the greater intensity or focus typical for autistic people.  

Doctors and other healthcare professionals can lack knowledge about how autism may present differently in women and girls. This means women and girls may be misdiagnosed with mental health issues or their autistic traits may be missed amid the symptoms of co-occurring conditions. Some tools used to diagnose autism are designed to identify autistic characteristics that may be more common in autistic men and boys. This means the process may not be as sensitive to characteristics more commonly found in autistic women and girls. 

In November 2022, NAS launched ‘Now I Know’, a campaign highlighting the experiences of late-diagnosed autistic women and non-binary people from across the country.

The campaign was photographed by autistic photographer Alex Heron, who works at Rankin Studio. You can watch short films or read longer interviews with the six people featured in the campaign. A series of additional interviews will be published at regular intervals sharing the stories of autistic women and non-binary people who responded to the #NowIKnow campaign on social media. 

Stories from the Spectrum: autistic women

Many of the autistic women we’ve spoken to have talked about getting a late diagnosis, or have had difficulty getting the support they need.

As part of our Stories from the Spectrum series, we interviewed several women and girls, who shared their experiences with us.

"I feel autistic women are more likely to be described as ‘anxious’ and an autism diagnosis overlooked, since it can challenge gender stereotypes." Dr Camilla Pang

Sara Gibbs , autistic comedy writer, told us:  "I think there is a lack of understanding of how autism can present in girls, who are often socialised differently."

Charl Davies , autistic tattoo artist, said:  "I find that being a female I am expected to behave a certain way to fit in socially which is why I have spent so much time masking."

Dr Camilla Pang , autistic scientist and author, explained:  "I feel autistic women are more likely to be described as ‘anxious’ and an autism diagnosis overlooked, since it can challenge gender stereotypes."

Dr Kate Fox , autistic poet and comedian, said: "I don’t think there’s an inherent difference between autistic men and women. What there is a difference in, is how society treats and socialises males and females."  

Are men more likely to be diagnosed as autistic than women?

Studies and statistics .

• Various studies suggest that the ratio of autistic males to females ranges from 2:1 to 16:1. The most-up-to-date estimate is 3:1.
• In Leo Kanner's 1943 study of a small group of autistic children, there were four times as many boys as girls.
• Lorna Wing (renowned psychiatrist and co-founder of our charity's first diagnosis centre)  found in her 1981 paper on autism and sex ratios in early childhood, that among people with a diagnosis of Asperger syndrome (as it was called at the time) there were 15 times more men and boys than women and girls, while in autistic people with learning difficulties, the ratio of men and boys to women and girls was closer to 2:1.
• In a much larger 1993 study of Asperger syndrome in mainstream schools in Sweden, Ehlers and Gillberg found a boy to girl ratio of 4:1.
• Brugha's 2009 survey of adults living in households throughout England found that 1.8% of men and boys surveyed had a diagnosis of autism, compared to 0.2% of women and girls.
• In 2015, the ratio of men to women supported by the National Autistic Society’s adult services was approximately 3:1, and the ratio of boys to girls in our charity’s schools was approximately 5:1.
• In a 2017 study, Loomes and other researchers analysed existing prevalence studies and found that the male-to-female ratio was nearer 3:1.

Why are more men diagnosed as autistic?

We don’t know exactly why more men and boys are diagnosed as autistic than women and girls. It is clear that many autistic women and girls are missed or misdiagnosed. It was previously thought that there were many more autistic men than women, but estimates of the ratio have gotten closer and closer over time. 

Many theories to explain the diagnosis gap have been put forward, but none have been conclusively proven. Some of the theories are:

Please note:

Research and knowledge about autism changes constantly. Some of these theories may not reflect how we think about autism today.

• a potential 'female autism phenotype' – in other words, autistic women and girls have characteristics that don’t fit with the traditional profile of autism 
• autism assessments are less sensitive to autistic traits more commonly found in women and girls
• women and girls are more likely to ‘mask’ or camouflage their differences
• autistic traits in girls are under-reported by teachers 
• a range of biological and environmental factors may mean men and boys have a higher prevalence of autism
• the 'extreme male brain' theory of autism, which focuses on the effects of foetal testosterone on brain development

Critiques of the 'extreme male brain' theory

A critique of the extreme-male-brain theory of autism.

By Rachel Cohen-Rottenberg

Sexing the Autistic brain: Extreme Male?

By Dr Daniel Voyer

Books by autistic women and girls 

The following books were suggested by NAS staff. Inclusion on this list should not be considered an endorsement by NAS as these books have not been reviewed through the same rigorous process as our advice and guidance content sources. 

Non-fiction 

• Autism and masking: how and why people do it, and the impact it can have, Helen Ellis, with Dr Felicity Sedgewick and Dr Laura Hull 
• Safeguarding autistic girls: strategies for professionals, Dr Carly Jones MBE 
• Spectrum women , Barb Cook and Dr Michelle Garnett (editors) 
• Supporting spectacular girls: a practical guide to developing autistic girls' wellbeing and self-esteem, Helen Clarke 
• Taking off the mask: practical exercises to help understand and minimise the effects of autistic camouflaging, Hannah Belcher 
• The independent woman's handbook for super safe living on the autistic spectrum; The autism-friendly guide to periods; The autism-friendly guide to self-employment, Robyn Steward 
• Women and girls with autism spectrum disorder, Sarah Hendrickx 

Autobiography 

• Drama queen: one autistic woman and a life of unhelpful labels, Sara Gibbs 
• Odd girl out: an autistic woman in a neurotypical world, Laura James 
• Travelling by train: the journey of an autistic mother, Laurie Morgan 

Fiction 

• A Kind of Spark, Elle McNicoll 
• Can You See Me?, Libby Scott and Rebecca Westcott 

Links, resources and article sources

National autistic society.

• Autism Services Directory : for services and support 
• Branches : offering support, information and social activities for autistic adults, children and their families in their local areas 
• Community : our online community is a place for autistic people and their families to meet like-minded people and share their experiences

Other advice, information and support

• Autistic Girls Network  
• Scottish Women’s Autism Network  

Article sources

Research 

Author: Kock et al (2019) 

Title: Autistic women’s experience of intimate relationships: the impact of an adult diagnosis  

Source: Advances in Autism, 5(1):12. 

Author: Kanfiszer et al (2017) 

Title: ‘I was just so different’: The experiences of women diagnosed with an autism spectrum disorder in adulthood in relation to gender and social relationships  

Source: Autism: The International Journal of Research and Practice, 21(6):9. 

Author: Bargiela et al (2016) 

Title: The experiences of late-diagnosed women with autism spectrum conditions: an investigation of the female autism phenotype  

Source: Journal of Autism and Developmental Disorders, 46(10). 

Author: Baldwin and Costley (2016) 

Title: The experiences and needs of females adults with high-functioning autism spectrum disorder  

Source: Autism: The International Journal of Research and Practice, 20(4):13. 

Author: Wilson and Andrassy (2022) 

Title: Breastfeeding experiences of autistic women  

Source: MCN, American Journal of maternal Child Nursing, 47(1). 

Author: Steward et al (2018) 

Title: “Life is much more difficult to manage during periods”: Autistic experiences of menstruation  

Source: Journal of Autism and Developmental Disorders, 48(12). 

Author: Simantov et al (2022) 

Title: Medical symptoms and conditions in autistic women  

Source: Autism: The International Journal of Research and Practice, 26(2):16. 

Author: Seers and Hogg (2021) 

Title: ‘You don’t look autistic’: A qualitative exploration of women’s experiences of being the ‘autistic other’  

Source: Autism, 25(6):12. 

Author: Cumin et al (2021) 

Title: Positive and differential diagnosis of autism in verbal women of typical intelligence: A Delphi study  

Source: Autism, Volume Online First:1. 

Author: Samuel et al (2022) 

Title: Sensory challenges experienced by autistic women during pregnancy and childbirth: a systematic review  

Source: Archives of Gynaecology and Obstetrics, 305. 

Author: Corbett et al (2020) 

Title: Pubertal timing during early adolescence: Advanced pubertal onset in females with autism spectrum disorder  

Source: Autism Research, 13(12). 

Author: Moseley et al (2020) 

Title: ‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause  

Source: Autism, 24(6). 

Author: Dugdale et al (2021) 

Title: Intense connection and love: the experiences of autistic mothers  

Source: Autism, 25(7). 

Author: Seers and Hogg (2022) 

Title: “Fake it ‘till you make it”: Authenticity and wellbeing in late diagnosed autistic women  

Source: Feminism & Psychology: An International Journal, Volume Online First:1. 

Author: Pohl et al (2020) 

Title: A comparative study of autistic and non-autistic women’s experience of motherhood  

Source: Molecular Autism, 11(1). 

Author: Cazalis et al (2022) 

Title: Evidence that nine autistic women out of ten have been victims of sexual violence  

Source: Frontiers in Behavioral Neuroscience, 16. 

Author: Grant et al (2022) 

Title: Autistic women’s views and experiences of infant feeding: A systematic review of qualitative evidence  

Source: Autism: The International Journal of Research and Practice, Volume Online First:1. 

Author: Pecora et al (2019) 

Title: Characterising the sexuality and sexual experiences of autistic females  

Source: Journal of Autism and Developmental Disorders, 49(12). 

Author: Milner et al (2019) 

Title: A qualitative exploration of the female experience of autism spectrum disorder (ASD)  

Source: Journal of Autism and Developmental Disorders, 49(6). 

Author: Hampton et al (2021) 

Title: A qualitative exploration of autistic mothers’ experiences II: Childbirth and postnatal experiences  

Author: Sedgewick et al (2021) 

Title: Gender differences in mental health prevalence in autism  

Source: Advances in Autism, 7(3):17. 

Author: Dubreucq and Dubreucq (2021) 

Title: Toward a gender-sensitive approach of psychiatric rehabilitation in autism spectrum disorder (ASD): A systematic review of women needs in the domains of romantic relationships and reproductive health  

Source: Frontiers in Psychiatry, 12. 

Author: Moseley et al (2021) 

Title: Autism research is ‘all about the blokes and the kids’: Autistic women breaking the silence on menopause  

Source: British Journal of Health Psychology, 26(3). 

Author: Sedgewick et al (2019a) 

Title: the friendship questionnaire, autism, and gender differences: a study revisited   

Source: Molecular Autism, 10(40). 

Author: Cook et al (2017) 

Title: Friendship motivations, challenges and the role of masking for girls with autism in contrasting school settings  

Source: European Journal of Special Needs Education, 33(3). 

Author: Schalbroeck, F. et al (2019) 

Title: Risk of non-affective psychotic disorder or bipolar disorder in autism spectrum disorder: a longitudinal register-based study in the Netherlands  

Source: Psychological Medicine, 49(15), pp. 2543-2550. 

Author: Croen, L. et al (2015)  

Title: The health status of adults on the autism spectrum   

Source: Autism, 19 (7), 814-823 

Author: Kirsch et al (2020 ) 

Title: Association of comorbid mood and anxiety disorders with autism spectrum disorder 

Source: JAMA Paediatrics, 174(1), pp. 63-70. 

Author: Cumin et al (2021)  

Title: Positive and differential diagnosis of autism in verbal women of typical intelligence: A Delphi study 

Source: Autism, Online ahead of print. 

Author: Supekar et al (2017) 

Title: The influence of sex and age on prevalence rates of comorbid conditions in autism  

Source: Autism Research, 10(5). 

Author: Wood-Downie et al (2021)  

Title: Sex/Gender Differences in Camouflaging in Children and Adolescents with Autism 

Source: Journal of Autism and Developmental Disorders. Vol. 51, pp. 1353-1364 

Author: Sedgewick et al (2019b)  

Title: “It’s different for girls”: gender differences in the friendships and conflict of autistic and neurotypical adolescents 

Source: Autism, 23(5), pp. 1119-1132. 

Author: Donovan, 2020  

Title: Childbirth experiences of women with autism spectrum disorder in an acute care setting 

Source: Nursing for Women’s Health, 24(3). 

Author: Fusar-Poli et al, 2022 

Title: Missed diagnoses and misdiagnoses of adults with autism spectrum disorder | SpringerLink  

Source: European Archives of Psychiatry and Clinical Neuroscience volume 272, pages187–198 (2022) 

Author: Kentrou et al, 2021 

Title: Stability of co-occurring psychiatric diagnoses in autistic men and women - ScienceDirect  

Source: Research in Autism Spectrum Disorders. Volume 82, April 2021, 101736 

Author: Angell et al, 2021 

Title: Sex Differences in Co-occurring Conditions Among Autistic Children and Youth in Florida: A Retrospective Cohort Study (2012–2019) | SpringerLink  

Source: Journal of Autism and Developmental Disorders volume 51, pages3759–3765 (2021) 

Author: Lockwood Estrin et al, 2021 

Title: Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review | SpringerLink  

Source: Review Journal of Autism and Developmental Disorders volume 8, pages454–470 (2021) 

Author: Anderson et al, 2020 

Title: When the mask comes off: Mothers’ experiences of parenting a daughter with autism spectrum condition (sagepub.com)  

Source: Autism. Volume 24, Issue 6 

Author: Moseley et al, 2018 

Title: Self-reported sex differences in high-functioning adults with autism: a meta-analysis  

Source: Autism volume 9, Article number: 33 (2018) 

Author: Cola et al, 2022 

Title: Friend matters: sex differences in social language during autism diagnostic interviews | SpringerLink  

Source: Molecular Autism volume 13, Article number: 5 (2022) 

Author: Rynkiewicz et al, 2016 

Title: An investigation of the ‘female camouflage effect’ in autism using a computerized ADOS-2 and a test of sex/gender differences | SpringerLink  

Source: Molecular Autism volume 7, Article number: 10 (2016) 

Author: Rea et al, 2022 

Title: Sex Differences on the ADOS-2 (researchgate.net)  

Source: Journal of Autism and Developmental Disorders · April 2022 

Author: Whitlock et al, 2020 

Title: Recognition of Girls on the Autism Spectrum by Primary School Educators: An Experimental Study - Whitlock - 2020 - Autism Research - Wiley Online Library  

Source: Autism Research 13: 1358–1372, 2020 

Author: Dillon et al, 2021 

Title: Sex Differences in Autism: Examining Intrinsic and Extrinsic Factors in Children and Adolescents Enrolled in a National ASD Cohort | SpringerLink  

Source: Journal of Autism and Developmental Disorders (2021) 

Author: Leedham et al, 2020 

Title: ‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood (sagepub.com)  

Source: Autism. 2020, Vol. 24(1) 135–146 

Author: Moseley et al, 2021a 

Title: Autism research is ‘all about the blokes and the kids’: Autistic women breaking the silence on menopause - Moseley - 2021 - British Journal of Health Psychology - Wiley Online Library  

Source: British Journal of Health Psychology (2021), 26, 709–726 

Author: Kelly et al, 2022 

Title: Sense-making narratives of autistic women diagnosed in adulthood: a systematic review of the qualita (tandfonline.com)  

Source: Disability & Society 

Author: Rogers et al, 2016 

Title: Experiences of diagnosing autism spectrum disorder: A survey of professionals in the United Kingdom  

Source: Autism: the international journal of research and practice 

Author: Tsirgiotis et al, 2022 

Title: A Mixed-Methods Investigation of Diagnostician Sex/Gender-Bias and Challenges in Assessing Females for Autism Spectrum Disorder | SpringerLink  

Source: Journal of Autism and Developmental Disorders volume 52, pages4474–4489 (2022) 

Author: Tubío-Fungueiriño, 2020 

Title: Social Camouflaging in Females with Autism Spectrum Disorder: A Systematic Review | SpringerLink  

Source: Journal of Autism and Developmental Disorders volume 51, pages2190–2199 (2021) 

Author: Fowler and O’Connor, 2021 

Title: ‘I just rolled up my sleeves’: Mothers’ perspectives on raising girls on the autism spectrum (sagepub.com)  

Source: Autism. 2021, Vol. 25(1) 275–287 

Author: Jadav and Bal, 2022 

Title: Associations between co‐occurring conditions and age of autism diagnosis: Implications for mental health training and adult autism research - Jadav - Autism Research - Wiley Online Library  

Source: Autism Research. Volume15, Issue11, November 2022, Pages 2112-2125 

Author: Mandy et al, 2022 

Title: Mental health and social difficulties of late‐diagnosed autistic children, across childhood and adolescence (wiley.com)  

Source: Journal of Child Psychology and Psychiatry 63:11 (2022), pp 1405–1414 

Author: Huang et al, 2021 

Title: Factors associated with age at autism diagnosis in a community sample of Australian adults - Huang - 2021 - Autism Research - Wiley Online Library  

Source: Autism Research. Volume14, Issue12, December 2021, Pages 2677-2687 

Author: D’Mello et al, 2022 

Title: Exclusion of females in autism research: Empirical evidence for a “leaky” recruitment‐to‐research pipeline - D'Mello - Autism Research - Wiley Online Library  

Source: Autism Research 

Author: Bourson and Prevost, 2022 

Title: Characteristics of restricted interests in girls with ASD compared to boys: a systematic review of the literature | SpringerLink  

Source: European Child & Adolescent Psychiatry (2022) 

Author: Tillman et al, 2018 

Title: Evaluating Sex and Age Differences in ADI-R and ADOS Scores in a Large European Multi-site Sample of Individuals with Autism Spectrum Disorder | SpringerLink  

Source: Journal of Autism and Developmental Disorders volume 48, pages2490–2505 (2018) 

Author: Kaat et al, 2021 

Title: Sex differences in scores on standardized measures of autism symptoms: a multisite integrative data analysis (wiley.com)  

Source: The Journal of Child Psychology and Psychiatry. Volume62, Issue1, January 2021, Pages 97-106 

Author: Kalb et al, 2022 

Title: Analysis of Race and Sex Bias in the Autism Diagnostic Observation Schedule (ADOS-2) | Autism Spectrum Disorders | JAMA Network Open | JAMA Network  

Source: JAMA Network Open. 2022 

Author: Song et al, 2021 

Title: Natural language markers of social phenotype in girls with autism - Song - 2021 - Journal of Child Psychology and Psychiatry - Wiley Online Library  

Source: The Journal of Child Psychology and Psychiatry. Volume62, Issue8, August 2021 

Author: Boorse et al, 2019 

Title: Linguistic markers of autism in girls: evidence of a “blended phenotype” during storytelling | Molecular Autism | Full Text (biomedcentral.com)  

Source: Molecular Autism volume 10, Article number: 14 (2019) 

Author: Reindal et al, 2021 

Title: Structural and Pragmatic Language Impairments in Children Evaluated for Autism Spectrum Disorder (ASD) | SpringerLink  

Author: Wallisch et al, 2020 

Title: Brief Report: Predicting Sex Differences and Diagnosis from Early Parent Concerns (researchgate.net)  

Source: Journal of Autism and Developmental Disorders · January 2021 

Author: Del Bianco et al, 2022 

Title: Unique dynamic profiles of social attention in autistic females - Del Bianco - Journal of Child Psychology and Psychiatry - Wiley Online Library  

Source: Journal of Child Psychology and Psychiatry 63:12 (2022), pp 1602–1614 

Author: Kourti and MacLeod, 2019 

Title: "I Don't Feel Like a Gender, I Feel Like Myself": Autistic Individuals Raised as Girls Exploring Gender Identity  

Source: Autism in Adulthood: challenges and management 

Author: Brown et al, 2020 

Title: Am I Autistic? Utility of the Girls Questionnaire for Autism Spectrum Condition as an Autism Assessment in Adult Women  

Source: Autism in Adulthood 

Author: Moore et al, 2022  

Title: The intersection of autism and gender in the negotiation of identity: A systematic review and metasynthesis  

Source: Feminism and Psychology 

Author: Hayward et al, 2022 

Short report: Gendered workplace social interaction processes in autism – ScienceDirect  

Source: Research in Developmental Disabilities. Volume 129, October 2022 

Author: Cummins et al, 2018 

Title: Supporting Minimally Verbal Autistic Girls with Intellectual Disabilities Through Puberty: Perspectives of Parents and Educators | SpringerLink  

Source: Journal of Autism and Developmental Disorders volume 50, pages2439–2448 (2020) 

Author: Corbett et al, 2022 

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Source: Autism Research. Volume 15, Issue10, October 2022 

Author: Karavidas and de Visser, 2022 

Title: “It's Not Just in My Head, and It's Not Just Irrelevant”: Autistic Negotiations of Menopausal Transitions | SpringerLink  

Source: Journal of Autism and Developmental Disorders volume 52, pages1143–1155 (2022) 

Author: May et al, 2021 

Title: Overlap of autism spectrum disorder and borderline personality disorder: A systematic review and meta‐analysis - May - 2021 - Autism Research - Wiley Online Library  

Source: Autism Research. Volume14, Issue12, December 2021 

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Title: Untended wounds: Non-suicidal self-injury in adults with autism spectrum disorder (sagepub.com)  

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Professional practice 

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Title: Autistic people and menstruation 

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Title: Autistic female friendships 

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Title: Autistic girls and women 

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Title: Puberty 

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Title: Women, Girls and the Autism Spectrum (Diagnosis) 

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Author: Scottish Women’s Autism Network (SWAN), 2015 b 

Title: Women, Girls and the Autism Spectrum (Education) 

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Title: Wellbeing 

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Title: Healthcare 

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Title: Autistic women and girls 

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Title: Working with female adults living with autism in secure inpatient services  

Source: Nursing Times 

Author: Claire Jack, 2021  

Title: 5 subtle signs of autism spectrum disorder in women 

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Author: Natalie Engelbrecht, 2018  

Title: Autistic traits in women 

Source: Embrace Autism  

Author: Gupta and Chaudhary, 2021  

Title: Diagnostic challenges of high-functioning autism spectrum disorder in females 

Source: Cureus 

Author: Sheri Jacobson, 2021  

Title: Women and girls with autism – are symptoms different? 

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Title: Quirky Girls 

Source: Altogether Autism  

Author: Judy Eaton, 2018  

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Title: Autism and mental health 

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Title: Girls and autism: Flying under the radar 

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Title: Autism, girls & keeping it all inside 

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Author: Public Health England, 2019  

Title: Autism self-assessment exercise 2018: overview of results 

Source: Public Health England 

Author: SIGN, 2016  

Title: Assessment, diagnosis and interventions for autism spectrum disorders 

Source: SIGN 

Author: Rachel Moseley and Julie Turner-Cobb, 2022  

Title: Autism and menopause: Q&A with Rachel Moseley and Julie Turner-Cobb 

Source: Spectrum News 

Author: Elektra Team, 2022  

Title: Neurodiversity and menopause 

Source: Elektra Health 

Author: raisingchildren.net.au, accessed August 2022  

Title: Autistic girls: periods 

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Author: Tsara Crosfill-Morton, 2020  

Title: Managing your periods when you have autism 

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Author: Robyn Steward, 2019  

Title: Periods can be overwhelming if you’re autistic so I’ve created a step by step guide 

Source: Metro 

Author: Health for Teens, accessed August 2022  

Title: Autism and menstruation 

Source: Health for Teens 

Title: Autism and managing your periods 

Author: Rotherham Integrated Care Partnership, accessed August 2022  

Title: Periods and girls with autism spectrum disorder 

Source: Rotherham Integrated Care Partnership  

Author: Amaze, 2019  

Title: Download Amaze’s autism accessible menstruation resources. 

Source: Amaze 

Author: INTIMINA, 2022 

Title: How people on the autism spectrum experience and manage their periods  

Source: INTIMINA 

Title: Preparing for puberty: autistic children and teenagers 

Author: The Ed Psych Practice, 2021  

Title: Puberty is so much harder for children with autism 

Source: The Ed Psych Practice 

Author: Autism Society, accessed August 2022  

Title: Puberty and children on the autism spectrum 

Source: Autism Society 

Author: Amaze, 2016  

Title: Information sheet: Puberty and autism 

Author: Centre for Autism Middletown, accessed August 2022  

Source: Centre for Autism Middletown 

Author: Clare Farquhar, accessed August 2022  

Title: Breastfeeding if you are on the autism spectrum 

Source: The Breastfeeding Network 

Author: NHS, accessed August 2022 b 

Title: Menopause 

Source: NHS website 

Author: Wild, S. 

Title: Anxiety in girls with autism  

Source: Good Schools Guide (accessed 2020) 

Author: Carly Jones MBE (2022)  

Title: Safeguarding autistic girls at school 

Source: The National Autistic Society 

Author: Helen Clarke (2018)  

Title: Supporting autistic girls in schools 

Source: Impact Articles 

Author: Sarah Wild (2016)  

Title: Limpsfield Grange School: teaching autistic girls 

Author: Catriona Stewart, 2019  

Title: Peer mentoring for autistic females 

Author: Lana Grant, 2017  

Title: Autistic women, pregnancy and motherhood 

Source: National Autistic Society Professional Practice 

Author: Diane Fox, 2022  

Title: Supporting pregnancy autistic people 

Author: NHS East Suffolk and North Essex, accessed October 2022  

Title: Maternity support plans developed to support women with autism 

Source: Press release on NHS East Suffolk and North Essex website 

Lived Experience 

Author: Nadine Sibler, 2017 

Title: Menopause: Just When You Felt Less Socially Awkward   

Source: Autistic Women and Nonbinary Network 

Author: Cynthia Kim, 2014 

Title: Autistic Motherhood: Honoring Our Personal Choices   

Title: Motherhood: Autistic Parenting and Supports That Make a Difference   

Title: Motherhood: Autistic Parenting   

Author: Cynthia Kim, 2013 

Title: Understanding the Gender Gap: Autistic Women and Girls   

Title: Autistic Women: Misdiagnosis and the Importance of Getting it Right   

Author: Outdoor Prescription, 2017 

Title: Parenting and me, part 1 – the early years as a parent on the spectrum   

Source: Outdoor Prescription 

Author: Kirsten Lind Smith, 2014b 

Title: Research Wising Up to the Fact that Girls Present Differently than Boys   

Source: The Artism Spectrum 

Author: Rosie Weldon, 2021 

Title: Autism and periods   

Source: Rosie Weldon Blog 

Author: Cynthia Kim, 2012 

Title: ASPERGER’S AND MOTHERHOOD (PART 1)   

Source: Musings of an Aspie 

Title: ASPERGER’S AND MOTHERHOOD (PART 2)   

Title: ASPERGER’S AND MOTHERHOOD (PART 3)   

Title: ASPERGER’S AND MOTHERHOOD (PART 4)   

Title: ASPERGER’S AND MOTHERHOOD (PART 5)   

Title: AT THE INTERSECTION OF GENDER AND AUTISM – PART 3   

Title: AUTISM AND MENOPAUSE: MORE QUESTIONS THAN ANSWERS   

Title: BEYOND THE TALK: WHAT ELSE AUTISTIC GIRLS NEED TO KNOW ABOUT PUBERTY   

Author: Purple Ella 

Title: Autistic Women & Girls Conference Vlog|Purple Ella  

Source: youtube 

Author: Purple Ella, 2018 

Title: Diagnosing Autistic Women and Girls  

Source: youtube  

Author: Sarah Douglas, 2019 

Title: Autism and Sexual Vulnerability-One Woman’s Story  

Source: neuroclastic 

Author: differentnotdeficient, 2019 

Title: The Failings of the Mental Health System for Autistic Women  

Source: NeuroClastic 

Author: Dana Vilker, 2021 

Title: Sexual Predators and Women on the Spectrum  

Source: Neuroclastic 

Author: Samantha Craft, 2016 

Title: PAST TWELVE: ASPERGERS AND TEENAGE YEARS  

Source: Everyday Autistic 

Author: Wenna Fullerton, 2020 

Title: My autism diagnosis as an adult  

Source: Me Decoded 

Author: Purple Ella, 2017a 

Title: AUTISM AND PREGNANCY  

Source: Youtube 

Author: Yo Samdy Sam, 2019a 

Title: Being an AUTISTIC mother: what's it like?  

Source:  youtube 

Author: Purple Ella, 2017b 

Title: AUTISM AND GIVING BIRTH  

Author: Purple Ella and Yo Samdy Sam, 2020 

Title: Autistic parenting Q&A (with @Yo Samdy Sam )  

Author: Yo Samdy Sam, 2019b 

Title: Autistic pregnancy: how I coped  

Source: YouTube  

Author: Yo Samdy Sam, 2021 

Title: Autism in girls - I was wrong  

Source: YouTube 

Title: First trimester pregnancy update // Autistic and pregnant  

Author: Yo Samdy Sam, 2019c 

Title: Autism symptoms in GIRLS  

Author: Olivia Hops, 2020 

Title: 10 Female Autistic Traits | AUTISM IN GIRLS  

Author: Olivia Hops, 2021a 

Title: Masking in Autistic Females | AUTISTIC MASKING  

Author: Olivia Hops, 2021b 

Title: Autism and Relationships Part 1: Friendships | AUTISM IN GIRLS  

Author: Olivia Hops, 2021c 

Title: 9 Childhood Autistic Traits in Girls | EARLY SIGNS OF AUTISM  

Author: Olivia Hops, 2021d 

Title: Autism and Relationships Part 2: Romantic Relationships | AUTISM IN GIRLS  

Author:  Olivia Hops, 2021e 

Title: I was Groomed as an Autistic Teen | AUTISM IN GIRLS  

Author: Olivia Hops, 2021f 

Title: 10 More Female Autistic Traits | AUTISM IN GIRLS  

Author: Olivia Hops, 2021g 

Title: Autism and Periods (+ Period Underwear Review and My Biggest Meltdown Ever) | AUTISM IN GIRLS  

Author: Alex, Neurodiversity Foundation, 2022 

Title: Autism in Women: How My Late Diagnosis Allowed Me to Fully Accept Myself (@potentia.neurodiversity)  

Author: Mom on the Spectrum, 2021 

Title: PARENTING WITH AUTISM: The Final Straw that Led Me to Seek Diagnosis // Autism in Women  

Title: Periods and Autism // 9 Hacks for Managing PMS // Autism in Women  

Author: Mom on the Spectrum, 2022 

Title: 16 Overlooked Autistic Traits in Females / AFAB Individuals  

Author: Agony Autie, 2018 

Title: Autistic Women & Girls | What's That?!  

Author: Purple Ella, 2017c 

Title: AUTISM AND PMT|Purple Ella  

Author: Autmazing, 2020 

Title: Autism, Girls, and Friendship| My Personal Experience  

Author: Autmazing, 2018a 

Title: My Experience as an Autistic Mom of Autistic Kids: The Invisible Years  

Author: Autmazing, 2018b 

Title: How Autism Has Made Me A Different Sort of Mom (and why that isn't a bad thing)  

Author: Hollie Mabbott, 2021a 

Title: autism and girls//difference between autism in girls and autism in boys  

Author: Hollie Mabbott, 2021b 

Title: AUTISM in females SIGNS//life as an AUTISTIC GIRL  

Author: Hollie Mabbott, 2021c 

Title: my childhood traits as an AUTISTIC GIRL//living with autism as a child  

Author: Hollie Mabbott, 2021d 

Title: living with AUTISM as a GIRL//Why do autistic girls MASK?  

Author: Becoming Autism, 2022 

Title: Autistic and Pregnant | Managing The First Trimester  

Author: neurodivergent me, 2021a 

Title: Autism traits in girls and women⎥Autistic traits I struggle the most with⎥#actuallyautistic  

Author: neurodivergent me, 2021b 

Title: Pregnant & Autistic⎥1st trimester update⎥My experience being pregnant as an autistic woman   

Author: neurodivergent me, 2021c 

Title: 8 autism traits in girls & women, explained by an autistic woman⎥AUTISM IN GIRLS  

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Title: My Autism Diagnosis Journey - Female With ASD  

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Title: Unmasked: Living With PMDD & Autism  

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Title: Autism and Puberty  

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Author: Sara King, 2021 

Title: My experiences of pregnancy, birth and motherhood as an autistic mum  

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The Spectrum magazine

Explore one of the UK's largest collections of autistic art, poetry, and prose. The Spectrum magazine is created by and for autistic people, and is available both online and in print.

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5 Subtle Signs of Autism in Women

3. disliking uncomfortable clothes..

Posted March 10, 2020 | Reviewed by Devon Frye

• What Is Autism?
• Find a therapist to help with autism

Women with autism often display very different symptoms than men with autism, which may lead to an incorrect diagnosis or failure to be referred for diagnosis.

Not only do many women with autism spectrum disorder (ASD) act in a more socially neurotypical way—usually as a result of having put a considerable amount of effort into learning how to act socially—but the focus of their attention is different to that of men with ASD.

Here are five signs of autism in women:

1. Intense focus on a person/band/celebrity. One of the criteria used for determining ASD—for instance, in Simon Baron-Cohen’s Asperger ’s Test 1 —is an intense focus on "things," which may be related to collecting and hobbies such as train spotting.

Women with ASD also display very intense interests but, whilst they may be focused on objects, their focus is just as likely to be on people. Girls growing up with ASD may become obsessed with a celebrity or band to the extent that they need to know every single fact about them. Many of my clients who are in relationships become so focused on their partner that they can lose sight of their own needs.

Because a focus on celebrities and people is seen as more "normal" than a focus on collecting model cars or napkin rings, it contributes to the fact that girls and women may fail to be diagnosed with ASD.

2. Anxiety and depression . Like many women, I was diagnosed with anxiety and depression. Having ASD and trying to fit into a neurotypical world is hard, and women can become depressed and anxious as a result of constantly struggling to cope with things that many people find easier. Without a diagnosis of ASD, it’s easy to judge oneself harshly and it’s easy for other people to misunderstand you, both of which can lead to feelings of low self-esteem , anxiety, and depression.

3. Disliking uncomfortable clothes. Many children with autism have sensory issues relating to clothing including sensitivity to fabrics, textures, tags, and comfort. Adult women with ASD may continue to be sensitive when it comes to wearing uncomfortable clothes and may choose comfort and function over style.

Whilst I’m not as sensitive as I was when I was a child—when I couldn’t touch wool or wet nylon and would have a tantrum if there was a tag on my clothes—I still have to cut the top of my socks and always choose comfort over style.

4. Lack of eye contact. Since receiving my own diagnosis and working with other women with ASD, I’ve become more aware of the difficulty women with autism may have in making eye contact. As with other aspects of social interaction, many women have learned to make eye contact and force themselves to do so, but it’s not something that comes naturally and can be quite tiring.

5. Less severe symptoms than men with ASD. Girls with ASD may display less severe symptoms than boys. 2 This could be the result of several factors, including a stronger desire to learn socially acceptable ways of acting and repression of certain ASD behaviours. Girls with ASD may also simply be seen as more "quiet"—a quality that is regarded in itself as more socially acceptable.

For me, having ASD means being regularly confused. I’m confused about other people’s motives, partly because I don’t pick up on what’s about to come and I don’t understand what’s behind their actions. I tend to be very naïve and take other people at face value. I’m confused when others think I’ve been rude, selfish, or inappropriate when I’ve been trying to act my best.

I have very poor facial recognition which results in regular confusion as people who are completely unknown to me strike up conversations. These days, I try and surround myself with supportive, honest people—but as a younger woman, the social confusion, particularly, meant I was quite open to manipulation and could become very hurt by others’ actions, as I failed to understand what was behind them.

Because of the difference in women’s ASD symptoms and because women may learn to mask their symptoms beneath a veneer of copied neurotypical behaviours, women with ASD are sometimes referred to as being "camouflaged" 3 which contributes to the fact that so many women go through life without a diagnosis. Hopefully, as the understanding of women’s presentation of ASD increases, diagnostic criteria will become more encompassing and more women and girls will receive the correct diagnosis.

Facebook image: panitanphoto/Shutterstock. LinkedIn image: Konstantin Zibert/Shutterstock

https://www.aspergerstestsite.com/75/autism-spectrum-quotient-aq-test/

https://www.kennedykrieger.org/patient-care/conditions/autism-spectrum-…

https://digest.bps.org.uk/2017/02/24/theres-such-a-thing-as-autism-camo…

Claire Jack, Ph.D. , is a hypnotherapist, life coach, researcher, and training provider who specialises in working with women with autism spectrum disorder (ASD). She was herself diagnosed with ASD in her forties.

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Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being

Miriam harmens.

1 Department of Psychology, University of York, York, UK

Felicity Sedgewick

2 School of Education, University of Bristol, Bristol, UK

Hannah Hobson

Associated data.

Supplemental material, sj-docx-1-whe-10.1177_17455057221137477 for Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being by Miriam Harmens, Felicity Sedgewick and Hannah Hobson in Women’s Health

Supplemental material, sj-docx-2-whe-10.1177_17455057221137477 for Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being by Miriam Harmens, Felicity Sedgewick and Hannah Hobson in Women’s Health

Supplemental material, sj-docx-3-whe-10.1177_17455057221137477 for Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being by Miriam Harmens, Felicity Sedgewick and Hannah Hobson in Women’s Health

There has been suggestion that current diagnostic instruments are not sufficient for detecting and diagnosing autism in women, and research suggests that a lack of diagnosis could negatively impact autistic women’s well-being and identity. This study aimed to explore the well-being and identity of autistic women at three points of their diagnostic journey: self-identifying or awaiting assessment, currently undergoing assessment or recently diagnosed, and more than a year post-diagnosis.

Mixed-methods were used to explore this with 96 women who identified as autistic and within one of these three groups. Participants completed an online questionnaire, and a sub-sample of 24 of these women participated in a semi-structured interview.

Well-being was found to differ significantly across groups in three domains: satisfaction with health, psychological health, and environmental health. Validation was found to be a central issue for all autistic women, which impacted their diagnosis, identity, and well-being. The subthemes of don’t forget I’m autistic; what now?; having to be the professional ; and no one saw me were also identified.

Conclusion:

These results suggest that autistic women’s well-being and identity differ in relation to their position on the diagnostic journey in a non-linear manner. We suggest that training on the presentation of autism in women for primary and secondary healthcare professionals, along with improved diagnostic and support pathways for autistic adult women could go some way to support well-being.

Introduction

Autism is characterized by social communication and interaction difficulties as well as restricted and repetitive behavioural patterns and sensory sensitivities. 1 Gender differences in autism diagnosis in adulthood have been found, with the proportion of women seeking a diagnosis increasing with age, and gender ratios of prevalence ranging from 1 woman for every 1–3 men. 2 This suggests that the prevalence estimates of autistic women may be lower than reality due to many now being diagnosed later in adulthood. The aim of this study is to explore the interaction between diagnosis and the diagnostic process, identity, and well-being for adult autistic women.

Some have argued that there could be a ‘female autism phenotype’ which is not picked up by current diagnostic instruments, contributing to females being misdiagnosed or missed altogether, leading to the diagnostic differences seen between females and males with autism. 3 The phenotype suggested includes females camouflaging their difficulties, leading to them not being recognized; their restricted and repetitive interests being seen as more ‘typical’ for their age and therefore not being seen as autistic symptoms; and a higher co-occurrence of internalizing disorders. 3 , 4 Indeed, examining the role of gender in diagnostic instruments, studies have found that most of the diagnostic tools used currently were developed based largely on the observation of boys, and that many diagnostic tools, including the Autism Diagnostic Observation Schedule (ADOS) and Autism Diagnostic Interview-Revised (ADI-R), are less sensitive to women and girls. 5 Others have found six traits and behaviours which consistently show gender differences, and which are a barrier to young autistic women gaining an autism diagnosis: behavioural problems, social and communication abilities, additional diagnoses/misdiagnosis, relationships, language, and repetitive and restrictive behaviours and interests. 6 Driver and Chester 5 support this, showing that many autistic women are first mis/diagnosed with mental health conditions, overshadowing an underlying autism diagnosis and stopping further investigation.

Understanding the process of diagnosis from autistic women’s perspective is crucial. While diagnosis might open up additional support and understanding, there may be factors that influence whether the process has a positive effect. The stereotype of autism as a ‘male’ disorder, even within healthcare, can be a barrier to women gaining an autism diagnosis; Driver and Chester 5 found professionals involved in primary care and in diagnosis to be lacking in knowledge and training, while Lockwood Estrin et al. 6 found parental concerns, others’ perceptions, a lack of information and resources, clinical bias, and compensatory behaviours on the women’s part to be perceived barriers to diagnosis by autistic women. Barriers to accessing healthcare may be one of the greatest difficulties within the process of diagnosis for autistic individuals, with 80% of autistic adults reporting difficulties around visiting their general practitioner. 7 This was associated with increased adverse health outcomes for autistic adults, and it may be that these challenges mean diagnosis itself is not accessible to all autistic individuals. In addition, autism stereotypes continue post-diagnosis, impacting autistic women’s access to support due to the support available being tailored to men or those with a co-occurring intellectual disability. 8

Timely diagnosis can have a significant impact on autistic women and girls’ well-being, with studies showing improved well-being post-diagnosis, and those who are undiagnosed having worse outcomes. With autistic women being more likely to be diagnosed later in life than men, some may argue that they have made it this far and therefore do not need a diagnosis. However, the known negative impact of being undiagnosed on well-being means that even if diagnosis comes later in life, it is still valuable in facilitating an improved self-understanding and increased access to support. 9 Without a diagnosis, autistic women have been shown to have increased vulnerability due to social difficulties, which can lead to exploitation. 10 Therefore, timely diagnosis is crucial in improving autistic women’s well-being and safety generally. However, the extent to which diagnosis improves well-being has been suggested to rely on the level of acceptance both by oneself and others of autistic women. 11 This study found that autistic women can be exhausted by the diagnostic process, which is exacerbated by the stereotypes they face and the lack of acceptance and understanding of themselves and from others. Therefore, timely diagnosis and an increase in knowledge and understanding around autism, especially autistic women’s presentation, may be key in improving autistic women’s well-being.

Diagnosis (or a lack thereof) could also have a profound impact on autistic women’s sense of identity. The aspects of the diagnostic process which can have a negative impact on autistic women’s identity have been found to include general practitioner’s (GP’s) dismissing concerns, 12 and an historic lack of diagnostic availability and information surrounding autistic women’s diagnoses. 8 In addition, Bargiela et al. 12 found that masking, both pre- and post-diagnosis, can create confusion for autistic women surrounding their identity. Although many women report relief and positive feelings at diagnosis, identity can be negatively impacted due to self-doubt and feelings of grief for autistic women. 13 However, this study also found that many women report a positive impact of diagnosis on their identity, due to an increase in self-acceptance and self-reflection post-diagnosis. This can in turn have a positive impact on their well-being due to an increased understanding of themselves, their behaviours, and their interpersonal relationships. One area which has supported autistic women to form their identity is social media; Bargiela et al. 12 found that through connecting with other autistic women, participants were able to form connections and identities based on their special interests rather than traditional societal norms for women.

In sum, previous research documents important relationships between diagnosis, well-being, and identity in autism women. This study aimed to investigate these relationships further, by considering these issues in women at different stages of diagnosis, specifically: those who have not been diagnosed but who self-identify as autistic, those in the process of being diagnosed or who have recently been diagnosed, and those who are several years post-diagnosis. By comparing these groups on measures of well-being and interviewing them about their identities in relation to their diagnostic status, we aimed to explore how the process of diagnosis impacts autistic women, their well-being, and identities.

Positionality statement

The research team for this study was neurodiverse, with one autistic researcher and two non-autistic researchers. The researcher conducting the interviews was autistic and disclosed this to participants before the start of each interview. In addition, the autistic researcher completed the first round of coding which was then verified by the rest of the research team.

A mixed-methods design was used for this study. Quantitative data were collected through surveys measuring autistic traits, quality of life, and autism-related quality of life, and individual characteristics (age, diagnostic stage, and gender identity). Semi-structured interviews were then conducted, using information from the surveys to inform interview schedule design, allowing participants to expand on their experiences and explore the more specific details of these. Data collection took place more than 8 weeks in the summer of 2021 for both the questionnaires and interviews.

An a priori power analysis for the quantitative portion was conducted using G*Power 3.1.9.7 14 which indicated that the minimum sample size required to achieve 80% power for detecting a medium effect 15 at a significance criterion of α = .05 was 42 for a one-way analysis of variance (ANOVA). Therefore, the researchers set a target of 50 questionnaire participants to gain sufficient power, and 20 interview participants to gain a rich data set.

Participants

Participants were recruited via the researchers’ social media channels where adverts were posted. Overall, 96 women completed the questionnaire surveys, and 24 of these women agreed to also take part in an interview. The inclusion criteria were that the participant identified as women, had gained a diagnosis in the United Kingdom or identified as autistic and were living in the United Kingdom, and were above 18 years of age. The ages of interview participants were not recorded to ensure their anonymity and that no links were made between individual participants’ questionnaire and interview data. Table 1 shows the sample characteristics of online questionnaire participants, and their age at diagnosis was not recorded or whether the participants in Group 2 were undergoing assessment or recently diagnosed.

Sample characteristics of online questionnaire participants.

Participants were asked at what stage of their diagnostic journey they were at: Group 1 = self-identifying or awaiting assessment (interviews n = 8); Group 2 = undergoing assessment/less than a year since diagnosis (interviews n = 5); and Group 3 = more than a year post-diagnosis (interviews n = 11). Of the interview participants who were in Groups 2 and 3, 5 participants were diagnosed privately within a setting separate from the British National Health Service (NHS) and 11 on the NHS free of charge, and 14 participants were diagnosed as adults with only 2 diagnosed in childhood. The age at diagnosis did not appear to lead to a difference in experience for the women in this study, the important factor appeared to be the time of acceptance/understanding of the diagnosis which for all women was in late adolescence/adulthood. Of the participants in Group 2, four had been diagnosed in the past year and one was undergoing their assessment.

A Fisher’s exact test was run on the group × age cross-tabulation and revealed that the proportion of those in different age groups was not significantly different across diagnostic status groups, suggesting that age and diagnostic status are independent variables (p = .082).

Diagnoses were not verified independently, but 90% of participants met the clinical cut-off point for diagnostic referral on the AQ-10. There was no main effect of group on AQ-10 score (F(2) = .17, p = .864), indicating that those who were not yet diagnosed had similar levels of autistic traits to those who had a diagnosis.

Materials and procedure

Ethical approval was gained from the University of Bristol School of Education Ethics Committee prior to the commencement of data collection (Approval No. 2021-8772-8719). Participants provided separate written consent for participation in the online questionnaire and interview. Participants initially completed the online questionnaire, with the option to sign-up for an interview offered on completion.

Online questionnaire

Participants completed the questionnaires anonymously via their own electronic device. The questionnaire surveys were delivered through the University of York’s Qualtrics-XM (Qualtrics, 2021) and included the following demographic questions: participants’ age range, gender identity, and what stage of their autism diagnostic journey they were at. Measures of autistic traits and quality of life were also collected, in the order presented below. The questionnaires took approximately 15 min to complete.

Autism Spectrum Quotient (AQ-10)

This psychometric measure was used as an indicator of autistic trait level of the participants. 16 This tool is used to assess the autistic traits of adults without a co-occurring moderate or severe intellectual disability, giving us an indication of the likelihood of an individual being autistic, with a score of 6 or more indicating high levels of traits and being the cut-off for referral for assessment. As having an autism diagnosis was not a criterion for inclusion in this study, no further measures or confirmatory tests were run surrounding this.

World Health Organization Quality of Life short version (WHOQoL-BREF)

The WHOQoL-BREF was used in this study as a measuring of overall well-being through the perception of participant’s quality of life (QoL) reported in the survey. 17 The test has 26 questions measuring: overall QoL, overall satisfaction with health, physical health, psychological health, social relationships satisfaction, and environmental health.

Autism Spectrum Quality of Life

Used alongside the WHOQoL-BREF, this survey pays more specific attention to factors which have been shown to specifically impact the well-being, and QoL of autistic individuals. 18 The questionnaire specifically looks at the participant’s perception of support, friendships, barriers faced, and satisfaction with their identity as autistic.

Individual interviews were conducted by an autistic member of the research team with each participant over Zoom (Zoom Video Communications Inc., 2016) as it was not possible to conduct face-to-face interviews due to the COVID-19 pandemic. Two participants chose to have their cameras off. Participants were made aware of the researcher’s positionality as autistic prior to the commencement of the interview. An interview schedule (see supplementary materials ) was developed by the research team to be used as a guide and sent to participants ahead of their interview. The interviews were semi-structured, whereby the researcher followed the interview schedule as a guide, but also asked participants to elaborate where necessary or did not ask certain questions if deemed not appropriate. The interview focused on five key areas: the participant’s diagnostic experience (or anticipation thereof), their identity (or lack thereof) as an autistic woman, their well-being, the support (or lack thereof) they had, and any factors which were beneficial or barriers to them receiving a diagnosis. The interviews took place in July and August 2021 and lasted between 20 and 50 min (mean = 36 min). Following the interview, participants were provided with the option to receive a copy of their transcript and given the opportunity to email the researchers with any comments on the transcript or any further thoughts they had post-interview. Three participants responded with written feedback on their transcript or further thoughts, and these were incorporated into their transcripts for analysis. Interview participants each received a £20 Amazon voucher. The audio from each Zoom interview was recorded, and a transcript automatically generated by Zoom which was reviewed and corrected by the interviewer.

Data analysis

Quantitative data analysis was completed using IBM SPSS (version 27.0), while qualitative data analysis coding was completed using NVivo (version 12). Interview transcripts were analysed by applying inductive reflexive thematic analysis. 19 Data were analysed in six steps following Braun and Clarke’s 19 approach: 1. familiarization with the data; 2. initial code generation; 3. collation of codes into potential themes; 4. revision of themes through discussion between authors; 5. refining and naming of themes; 6. production of report. Initially, the first author coded one transcript from each group (overall 12.5%) before sharing the transcript and coding with the other authors for feedback. The first author coded the remaining transcripts and generated initial themes, and then the entire team met to discuss the generation of themes and a thematic structure. Saturation was achieved with the data set of 24 interviews as the last two interviews coded in each group (total n = 6) generated no new codes.

Online questionnaires

Table 2 includes the descriptive statistics for the questionnaire measures. For all questionnaires, higher scores indicate higher levels of autistic traits or quality of life.

Questionnaire measure descriptive statistics by diagnostic stage group.

AQ-10, Autism Spectrum Quotient; WHOQoL: World Health Organization Quality of Life short version; ASQoL: Autism Spectrum Quality of Life.

A one-way ANOVA revealed there were significant main effects of diagnostic stage group on the following measures from the WHOQoL-BREF Table 3 : satisfaction with health (F(2) = 4.56, p = .013), psychological health (F(2) = 9.39, p < .001), and environmental health (F(2) = 4.58, p = .013). The patterns of these effects are seen in Figure 1 . There were no significant main effects of diagnostic stage group on overall quality of life, physical health, or social relationships satisfaction. The one-way ANOVA also revealed a significant main effect of diagnostic stage group on total WHOQoL score (F(2) = 5.52, p = .005). Follow-up analysis using the Bonferroni test showed that the mean scores for satisfaction with health increased with each diagnostic stage, whereas the mean scores for psychological health, environmental health, and total WHOQoL score were highest in Group 2, followed by Group 3, with Group 1 having the lowest mean scores ( Figure 1 ). In the Autism Spectrum Quality of Life (ASQoL), a one-way ANOVA revealed no significant main effect of diagnostic stage group on overall score or autistic identity score.

Descriptive statistics for WHOQoL and ASQoL measures by diagnostic stage group.

WHOQoL: World Health Organization Quality of Life short version; ASQoL: Autism Spectrum Quality of Life.

The patterns of effect across groups: (a) satisfaction with health, (b) psychological health, (c) environmental health, and (d) total score.

The overarching theme of validation was developed with four subthemes: Don’t forget I’m autistic, What now?, Having to be the professional , and No one saw me . Additional supporting quotes for each subtheme can be found in the Supplementary Materials . The quotes are drawn from the transcripts of participants, and each quote is labelled with a participant number (PXX), and the diagnostic group they are in (Group X).

The majority of participants saw diagnosis as a validation of their identity, which in turn positively impacted their well-being. Having a stronger identity as an autistic woman was reported to lead to an improvement in well-being for these women as they were able to make adjustments to their environment and day-to-day life without feeling wrong or guilty about doing so. This supports the questionnaire data which suggest that psychological and environmental well-being may improve with diagnosis compared to without diagnosis. Stereotypes were seen as a barrier to diagnosis, and to validation, with some participants reporting ‘imposter syndrome’ and worsened well-being due to not fitting the stereotypical image of autistic males:

My idea of autism was Rain Man, it was the little boy with trains and maths and so on, and I think probably as most people’s idea at the moment. (P13, Group 2)

Others had doubts that they were ‘being silly’ or ‘making it up’ due to feeling they had previously been gaslit by, or lacked validation from, healthcare professionals. Diagnosis was also seen as validation for these women as it allowed them to access support; prior to diagnosis, they did not have ‘a piece of paper’ which validated them as autistic, meaning access to support was far more limited (if not impossible). Gaining this validation removed these doubts and improved their well-being through confirming their sense of themselves as autistic:

I went to my GP, and I didn’t really know what say, but I just knew something wasn’t OK, and something needed to stop, and . . . he started off saying, because I go to work every day, that means everything’s fine and to me that wasn’t really true, and I think maybe because of my autism, I found it really hard to not go to work every day . . . (P22, Group 3) I guess for me it’s [diagnosis] that kind of validation I’m after of this identity that I found for myself, I kind of feel like I want it, I want it to feel sort of more legitimate if that makes sense. (P08, Group 1)

However, some participants reported feeling they did not need a diagnosis, or that they had had these feelings previously, but that they felt validated by exploring their identity more and interacting with the autistic community on social media. Interaction with the autistic community was a validating experience for many of the participants, and improved their well-being, especially prior to their diagnosis, as they felt less alone in their experiences:

I’ve spoken to you know couple of late diagnosed women who said, ‘well, we lived, we lived our lives up until this point, like we, like we fought quite a lot, like you know we’ve gone against you know, all these kind of odds, and we’re here like you know how awesome are we’, and it’s like actually yeah and it’s just so positive, I think, and I think that really helps in the self-identification because you don’t you know want to identify with anything you know too negative. (P01, Group 1)

While interacting with other autistic people helped to create a positive connection with autistic identity, some participants in Groups 1 and 2 were undermined by the deficit-based model of psychiatric assessment, and this reduced their well-being due to having to work to find ways to refocus their identity away from only negatives presented in traditional clinical narratives:

When I got my report back from my diagnostic process and that was like literally 15 pages of deficits, and I felt really low for a couple of days after that, and I had to kind of really consciously kind of re-find the positivity. (P13, Group 2)

Validation also came for some participants in the form of understanding themselves and their experiences; participants reported that having an autistic identity or diagnosis allowed them to be kinder and more accepting towards themselves and their difficulties. Furthermore, in regard to stereotypes, many participants also reported the diagnosis to be validating as it relieved their feelings of failing as a ‘stereotypical woman’:

. . . before I just felt like I was a crumbling mess and I just needed to pull myself together, and I don’t have that voice myself anymore either you know telling myself oh I should be, should be doing better or I should be stronger and tougher and just sort of except like I’m going to cry over really stupid things. (P17, Group 3)

Don’t forget I’m autistic

The extent to which participants felt the diagnostic process and any subsequent support services were autism-friendly varied across our participants: some participants described themselves as having traits which they felt were forgotten or ignored even by those who they had disclosed their autistic identity/diagnosis to:

she sort of repeatedly said things that indicated that she didn’t mind if I behaved odd and she said, that was her thinking that she was being welcoming and inclusive; I don’t mind if you’re uncomfortable, I don’t mind if you look weird because you’re uncomfortable, that’s fine you be weird I’m not going to change anything, because I know I’m absolutely fine. (P23, Group 3)

Others noted instances where they felt particularly welcomed as an autistic person:

. . . it was just like ‘Oh, they really understand my needs’ because they had photos and biographies of everyone you were likely to meet, they had photos of all of their consulting rooms, a map, a photo of the outside of the building, so it was as if they anticipated all of the things that were likely to worry me. (P13, Group 2)

Some things described by participants reflected the interaction between autistic traits and diagnostic experiences. For example, feeling the need for ‘definitive’ validation of their identity by a professional, which could be linked to having inflexible thinking styles. When this was not made clear by the professional, this led to confusion around their autistic identity, which had a negative impact on well-being.

The wording was something like you know she meets the criteria for a positive diagnosis, should this be something that she wants, you know, so it was and I, and I talked about this at length with the psychologist like over the following couple of years, because I thought I felt uncomfortable about this idea of it was my choice . . . I’d sort of seen the diagnostic process as kind of drawing a line under that and going, you are, or you aren’t. (P15, Group 3)

Equally, finding it difficult to adapt to having a new identity as ‘confirmed’ autistic may be linked to dislike of change and intolerance of uncertainty, such as around how people will react to this information:

It’s kind of a bit of a struggle, there’s a lot of anxiety and there’s a lot of uncertainty as to how I’m going to navigate the world with this new identity. (P09, Group 2)

Furthermore, participants reported the impact of masking on their recognition, diagnosis, and validation; participants told us of the difficulties they faced with assessments due to facing the dilemma of having to ‘unmask’ to be diagnosed, which at times felt impossible due to how intertwined their true persona had become with their mask, or they would continue to mask, and the assessor would not recognize their autistic traits:

I sort of anticipate that because I’ve gotten fairly good at sort of presenting myself as a somewhat articulate and competent adult, that I’m not going to be taken seriously, and I’m not going to be able to convince people of the struggles that I do have. It feels like quite a scary thing. (P08, Group 1)

Further barriers and positive factors when seeking support for autistic women were reported around communication and practicalities: especially since due to COVID healthcare in the United Kingdom was moved to phone and video call appointments. This brought some benefits as women did not have to travel and negotiate public transport to attend appointments. However, for many of the participants, appointments became inaccessible, or access was restricted due to anxieties and difficulties in communicating when using the phone or video call. This negatively impacted their well-being, both psychologically and in some cases physically, as access to care was more difficult:

Video chatting like this, I find okay, but like on the phone I really struggled with and it kind of felt like because you couldn’t get, see anyone face to face, it was like I then couldn’t even talk on the phone because I, that was like a barrier for me. (P24, Group 3)

Participants from all groups discussed the long waiting times (6 months to more than 3 years) between referral and assessment, especially for those undergoing assessment through the NHS. For some, this gave them time to learn about autism and work out what being autistic meant to them, but overall, delays were linked to worse well-being for participants:

I don’t feel valid [to ask for support] because I haven’t got the formal label diagnosis and stuff and a lot of the time when you say I’m awaiting diagnosis it’s like ‘no, you need formal diagnosis’ and it’s like I can’t get that yet – that’s a nightmare. (P06, Group 1)

In addition, participants from all groups reported a lack of clarity in the diagnostic and support pathways for autistic adult women. Many participants felt like there was no clear pathway for them to follow from initially thinking about being autistic to discussions with a GP, and onto diagnosis, and that even post-diagnosis there was a lack of clarity as to where they could access support, if any:

I got diagnosed and then I had like one post-diagnostic session . . . It would have just been nice I don’t know just to, like I don’t know I felt like I was diagnosed and then like waved off on my way as, like it’d be nice if I could have just had like a couple more sessions, just like talk it through and just like dunno, process it with somebody. (P14, Group 3)

Furthermore, participants reported that even though there were many positives to identifying or being diagnosed as autistic, the experience of going back over old memories and past experiences with a new ‘autistic lens’, both pre- and post-diagnosis, was a traumatic one. Several participants discussed feeling the need to ‘unpack their past’ and that this had to be done without support. This depicts the participants’ feelings that there is not a smooth journey after identifying/diagnosis, it is not simply a matter of ‘taking off the mask’ and moving on with life as an autistic woman, but that there is still work to be done and that the experience can be traumatic and positive. For some participants, post-diagnostic support with other autistic people was helpful to combat some of these negative effects of the diagnostic process:

So, yes diagnosis: useless, in fact damaging. But the group, post-diagnosis group: brilliant, can’t recommend it enough, I think that should be mandatory, you don’t just spin people off and leave them with this bit of paper that may or may not be accurate. (P12, Group 2)

Relating to the statistical results, participants from Groups 1 and 3 reported a feeling of growing into their identity, unlike Group 2. This could suggest one reason behind the pattern seen in the psychological well-being graph, whereby during pre-diagnosis waiting or while beginning to self-identify, there is still a feeling of uncertainty which lowers well-being, then when a diagnosis is gained there is a lot of optimism, and participants feel they have found their identity, but as time passes the women feel that they still are growing into their identity, which links with the reports of unpacking and going through traumatic experiences due to that come from Group 3.

Having to be the professional

Many of the women reported having to do their own research to learn about autism, where to get support, where and how to seek a referral for diagnosis, and their rights. Some people report enjoying aspects of this research and learning about autism more generally; however, this theme encompasses the more negative reports of having to do research due to professionals lacking knowledge:

Yeah, so basically, I went to the doctors and I’d already researched a national autism website like how you should go to the doctors, so I printed off all the information because, like I also know that I’m quite a competent, I can come over as quite a competent person, so I printed off all of the information and took it to the doctors and said ‘I want to have it, an assessment for autism, this is all the reasons why this is the information from National Autistic Society, this is how you should refer me’, so I even told them like what my local area’s process was and, and then she said okay I’ll refer you on to the next step. (P11, Group 2) it feels very much like the onus is on you as an individual to make the assessment happen, rather than a medical practitioner saying ‘this is something that we should see’ or we should, you know just anything any kind of update, or any kind of knowledge that they sent you on a referral and you’ve not heard anything back. (P03, Group 1)

Furthermore, participants from Groups 1 and 3 reported feeling a need to educate the wider population and be ‘a professional’ in the field in this sense too, due to feeling a lack of understanding and that there is still discrimination against autistic individuals. This led to reports of not wanting to disclose or share their identity for some of the participants:

When I interviewed for a job, I didn’t tell them because I was worried that it would impact on that, and I kind of wish I had told them . . . I think it might have helped me with better support, but at the same time, I was just so worried about like being turned down for it because I went for a volunteer job once and put on that I was on the autistic spectrum and I got turned down, and I do think it was because of that. So, sometimes when I’m comfortable with people I tell them that I’ve got the diagnosis, and then like in job interviews I won’t tell them until it’s like needed, they need to know. (P24, Group 3)

This reluctance could help to explain the survey results seen in the psychological and environmental health categories; that Groups 1 may struggle more with feelings of needing to educate others due to beginning to consider autism, and Group 3 due to being diagnosed for some time, and their struggles around disclosure. In addition, those in Groups 1 and 3 reported a lack of follow-through on discussions with professionals, suggesting that support into getting into and out of the diagnostic process is when people feel they lack professional support, compared to directly when they are getting the diagnosis:

I think it would have been good to have signposting from one agency to another . . . but nobody ever said that, so I just had to like Google, I was asking my counsellor and asking all these other people, and it just, it’s so exhausting. (P01, Group 1)

In summary, most participants across the groups reported experiences of being disbelieved and dismissed by healthcare professionals, lacking support from healthcare professionals, and even when support was given that many professionals lacked knowledge of autism and how to support an autistic person:

I can do that a lot better than I used to. I’m sure, like the therapist would want to be like oh yeah that’s because of me, and you know or the psychiatrist, but I think honestly, I’ve done a lot of the work myself. (P17, Group 3)

No one saw me

The majority of women interviewed reported a lack of support throughout their life, from childhood through to adulthood, especially in school; many reported being bullied, not fitting in, not being supported as people thought there was ‘nothing wrong with them’ during their school years, and some specify that they believe school to be where they started masking. Some participants also reported that they slipped into the character of a ‘good girl’ at school as this is how they were labelled by teachers. Masking for many participants was described as the reason as to why no one ‘saw them’ and supported them, then or now, whether they were aware of it at the time or not:

I think it was definitely not picked up because I was a woman . . . I’m very high functioning, I think people think that I’m like making an excuse or I’m like making it up . . . I do feel a bit let down sort of for my whole adult life I’d been told that I was mentally ill and actually no that wasn’t the case I was perfectly healthy. (P04, Group 1)

In terms of visibility, many women reported a lack of autistic women portrayed in the media. However, when autistic women were seen in the media, this was beneficial to participants with several reporting this was how they first began identifying traits in themselves:

Everyone seems to have that kind of image of like the typical autistic person is like Sherlock Holmes or Sheldon Cooper, and if you don’t identify with that, you’re probably not autistic . . . it’s not actually, as you know, black and white as the media might make it out to be. (P09, Group 2)

Multiple participants reported that professionals who did understand or recognize were those with lived experiences of autism themselves (either being autistic themselves or having an autistic family member):

At the end, she told me she said, like I’m certain that you’re autistic and then she told me that her daughter is and she’s like you, like the way you are reminds me so much of her, so I think that’s why I felt understood by her. (P14, Group 3)

The aim of this study was to investigate autistic women’s diagnostic experiences in relation to their identity and well-being. Overall, our results suggest that diagnosis, identity, and well-being are closely interlinked. These results partially support other work showing interactions between diagnosis, identity, and well-being for autistic women, but importantly we highlight for the first time that these effects change throughout the diagnostic process: it is not the case that well-being automatically improves with time, but that validation through diagnosis, understanding, and acceptance impacts well-being and identity the most. Getting a diagnosis appears to improve the aspects of well-being and identity at the point of diagnosis through providing validation and the provision of some answers, but longer-term women can struggle with their identity as autistic and with accessing support, which is supported by the results of the quantitative questionnaires showing psychological and environmental health do not increase linearly along the diagnostic pathway. As all but one of our interview participants were diagnosed/seeking diagnosis in adulthood, this study mostly provides evidence for the impact of diagnosis on adult autistic women’s identity and well-being.

Many of the difficulties with diagnosis, identity, and well-being reported in this study surrounded the health and social care provided, or the lack thereof. This can be seen both in the interview data and in the low scores for health-related well-being from the online surveys. This supports other reports that clinicians involved in the diagnostic process are often not adequately trained or knowledgeable about autism in women. 5 Participants in this study reported that this leads to them feeling unseen and as though they must be the professional themselves, thereby risking the validation they are seeking – which negatively impacts well-being and identity.

As research has shown that many UK services fail to provide timely assessments, 20 it is unsurprising that waiting times were some of the most commonly reported barriers for the women in this study when seeking a diagnosis, and that these could lead women to seek a private assessment as they felt they needed the ‘answer’ sooner than the NHS could provide. The process for seeking and gaining and assessment in other countries in private or public services may differ to the United Kingdom; therefore it is important to bear in mind these results may not be generalizable across countries and services.

This project was the first to use mixed-methods approaches to provide evidence about the role of diagnosis in autistic women’s well-being. However, we note several limitations to the current work that will need to be addressed in future projects. Our statistical tests were conducted on a relatively small sample. Our sample was British women: this means that we are missing important experiences from women of other nationalities. Indeed, reports have shown that non-British black and Hispanic autistic children are diagnosed on average later that white autistic children 21 despite showing similar clinical profiles: 22 this suggests that non-Caucasian autistic people may similarly not fit an autism stereotype, leading to delays in referral and diagnosis. Non-Caucasian autistic women may thus be at double risk of being missed, due to their ethnicity and their gender. In addition, due to the methods of data collection, the study focused on the reflections of autistic women who were able to respond to a written questionnaire, and for the interviews were verbal. Therefore, the experiences and reflections of those who could not read, had a severe intellectual disability, or were non-verbal were missed. In future, research should aim to further this study to include non-binary individuals as non-conformity to a binary gender may further impact an individual’s sense of identity and need for validation.

Examining the extent to which participants felt they identified as autistic might be something for future research to consider: we did not include this in our quantitative study, but the extent to which individuals feel strongly connected to an autistic identity could vary, and the strength of this identity could have relationships to well-being. 23 Asking participants to quantify the strength of their identification and validation could also allow for studies to examine how these factors change over time: this study used a cross-sectional design but longitudinal work that follows women through their diagnostic journeys would also allow for future examination of how diagnosis impact identity and well-being over time.

Notwithstanding these limitations, our report has several implications for practice. First, reduced waiting times and clearer diagnostic pathways for autistic adults, especially women, are needed. Second, health care professionals should be mindful of the impact they can have on autistic women’s feelings of validation. For example, while it is common to write a diagnostic report that details the deficits individuals showed, which are used to confirm the presence of autism, several women found these reports to be discouraging.

This may be helped in part by our third recommendation, that greater post-diagnostic support is offered: this may help to mitigate some of the negative impacts of reading a diagnostic report that documents one’s shortcomings. We would recommend further work to examine when the timing of this post-diagnostic support is most suitable. A single post-diagnostic session to discuss diagnosis shortly after it is given may be too soon, and given that women’s well-being appears to peak shortly after diagnosis and then wane over time – a year or more after diagnosis – it may be suitable to consider whether support after a year could be offered. This could include some trauma focused 24 and identity building work.

Finally, training on the presentation of autism in women and girls for primary and secondary health care professionals is needed. Participants reported experiences of being told they were likely not autistic because they were working or because they had not been identified as autistic as a child: assumptions such as these need challenging, as it suggests health care professionals may assume that because autism is a lifelong disorder that all cases would have been detected in childhood. This misses the point that for some individuals, they are able to cope and mask their autistic difficulties into adulthood, when they nonetheless would benefit from diagnosis and support.

In conclusion, we found that autistic women’s well-being and identity interacted with the level of validation they felt of said identity by themselves and others, specifically healthcare professionals. Validation was seen to be associated with diagnosis for many of the women, suggesting initially that well-being and identity for autistic women are improved with diagnosis. However, well-being and identity were negatively impacted for autistic women due to a lack of support, both pre- and post-diagnosis, from health and social care professionals; long waiting times, lacking post-diagnosis care or support, and insufficient knowledge on the professionals’ part are reasons for this. Future work should aim to quantify autistic women’s feelings of validation and correlate these with quantified measures of autistic identity strength and well-being to explore this further.

Supplemental Material

Acknowledgments.

The authors thank the Laidlaw Foundation who sponsored Scholarship for MH and also thank the participants for sharing their experiences with them.

Supplemental material: Supplemental material for this article is available online.

Declarations

Ethics approval and consent to participate: The project received ethical approval from the University of Bristol School of Education Ethics Committee. All participants gave fully informed consent to participate.

Consent for publication: All participants gave explicit consent for their data to be used in publications.

Author contribution(s): Miriam Harmens: Conceptualization; Data curation; Formal analysis; Methodology; Project administration; Visualization; Writing – original draft; Writing – review & editing.

Hannah Hobson: Conceptualization; Formal analysis; Funding acquisition; Methodology; Project administration; Supervision; Validation; Writing – original draft; Writing – review & editing.

Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: MH is funded by a Laidlaw scholarship.

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Availability of data and materials: Data and materials are available on request from FS ( [email protected] ) upon reasonable request.

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Please note you do not have access to teaching notes, the presentation, recognition and diagnosis of autism in women and girls.

Advances in Autism

ISSN : 2056-3868

Article publication date: 11 March 2021

Issue publication date: 11 August 2021

Autistic women and girls have received comparatively less attention within clinical practice and research. Research suggests women tend to be diagnosed later than men, and are more likely to experience misdiagnosis.

Design/methodology/approach

This paper aims to report a narrative literature review that examines research on the presentation, recognition, and diagnosis of autistic women and girls.

Findings suggest that autistic females present differently to males and highlight low recognition of the female presentation of autism among the general public, in social spheres, educational, clinical and forensic settings. This lack of recognition appears to affect the likelihood of females being referred for diagnosis, the reliability of diagnostic assessments and subsequent access to support.

Originality/value

Recommendations for clinical practice focus on initiatives to increase awareness of the female presentation of autism, improving the diagnostic process for females, increasing female representation within autism training and for future research to support these goals.

• Autism spectrum disorder
• Asperger syndrome
• Neurodevelopmental
• Pervasive developmental disorder
• Developmental disorder
• Sex differences

Driver, B. and Chester, V. (2021), "The presentation, recognition and diagnosis of autism in women and girls", Advances in Autism , Vol. 7 No. 3, pp. 194-207. https://doi.org/10.1108/AIA-12-2019-0050

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Autism in Females: Is it Different?

What is autism.

Autism is a life-long neurological difference which means that autistic individuals experience and interact with the world differently to non-autistic people. These differences can result in various strengths and challenges.

Autism is best understood within the context of neurodiversity . This is the concept that the human brain shows a wide range of natural variance. Autism is a difference to be supported, rather than a disorder or impairment to be treated .  

Autism is a spectrum, meaning that a person’s experience of autism is unique to them. You will not come across two autistic individuals who share exactly the same strengths and challenges. This means that each person may need different support, and to varying degrees.

Although autism affects everyone differently, there are shared areas of difference. You may come across different terminology to describe these, including the ‘triad of impairments’, a term coined following pioneering work by Dr Lorna Wing and Dr Judith Gould in the 1970s.

The main areas of difference are:

• Communication and language differences.
• Social interaction differences.
• Rigid and repetitive behaviours, activities, and interests.
• Sensory differences.

In-depth Autism Awareness training

Our Autism Awareness in Education course is designed to help anyone who works in an education setting understand more about autism, and how to provide individualised, effective support to the autistic children and young people in their care. You may also be interested in our SEND in the Classroom course .

Autism in Girls and Women

Autism is a condition that affects all genders. However, current research shows that the ratio of diagnosed autistic males to females is 1:3 (Loomes et al, 2017). Why is this the case? Does autism really affect more men than women? There is some debate as to whether the prevalence of autism differs, or if the lower numbers of autistic girls and women are due to other factors.

There have recently been some high-profile female celebrities who have received an autism diagnosis in adulthood – including television presenter, Melanie Sykes. The media attention of these cases is helping to further public awareness, as there is still much stereotyping within media representations of autistic people (usually white, male individuals with genius capabilities, which does not reflect the breadth of autistic experience).

Why are Fewer Women Diagnosed with Autism?

There are a number of factors that could help explain why autistic girls and women are less likely to be diagnosed:

• Traditionally research has focussed around males and the characteristics most in line with an external presentation of autism often seen in males (we will look at this in more detail later in the article).
• The diagnostic criteria for autism has been historically based on the ways in which many autistic males present, meaning that it may be less suited to diagnosing autistic females. (Under current criteria, as set out in the ICD-11 and DSM-V diagnostic manuals, individuals may receive a diagnosis of Autism Spectrum Disorder – this replaced previous distinctions such as Asperger’s Syndrome, childhood autism, and pervasive developmental disorder-not otherwise specified (PDD-NOS), which also carried this male bias ). 
• Autistic females may be more likely to mask as young children, meaning that differences may not be picked up on at an early age. Masking is the suppression of parts of an individual’s autistic identity, often used as a strategy to ‘fit-in’. Autistic girls are often more skilled at mimicking their neurotypical peers. Not only does this lead to symptoms not being spotted, but it can be exhausting, and impact negatively on mental health. Parents often report what is sometimes called, ‘the Coke bottle effect’ – the pressure of coping with anxiety, and masking their autistic identity during the school day builds, and is only released when they get home.
• Due to gendered social expectations, girls’ differences may be perceived in different ways – for example, it may be considered more ‘usual’ for a girl to sit alone playing quietly, whereas a boy doing the same might be viewed as not socialising in a usual way. Similarly an autistic girl having a meltdown may be viewed as emotional and hysterical, conforming to gender-stereotyped views of girls ( Autistic Girls Network report , 2021).
• In line with displaying rigid and repetitive interests, behaviours, and activities, autistic people often develop intense interests, sometimes referred to as ‘special interests’. The special interests of those raised as females generally tend to be more ‘socially acceptable’. Autistic boys often focus on what could be considered unusual subjects, like the inner workings of machinery or train timetables, for example. Autistic girls, on the other hand, commonly develop strong interests in things that are considered more typical of girls their age, such as books, dolls, or celebrities. It’s likely that their interest will be more intensified but it’s much more likely to go unnoticed.

How Does Autism Present Itself Differently in Females?

It appears that women are under-diagnosed when it comes to autism. In the past, it’s been suggested that the behavioural characteristics of autistic females vary greatly compared to those of autistic men.

However, as highlighted by the Autistic Girls Network, rather than thinking in gendered terms, it can be more useful to think in terms of external and internal presentations . Females are more likely to exhibit an internal presentation, but so do some autistic males and non-binary individuals.

The fact that females are more likely to receive a diagnosis later in childhood or into adulthood, or receive a different initial diagnosis, may be down to autistic traits being overlooked or missed due to an internal presentation.

Signs of Autism in Females

If you are supporting an autistic person, as an education professional or otherwise, it is useful to be aware of what to look out for. Signs of an internal presentation of autism, most commonly seen in females, might include the following behaviours or traits:

• May appear more social but find it difficult to understand social hierarchy, be on the peripheries of friendship groups, or have intense friendships with regular ‘fallings out’. These differences in social interaction often become apparent in the pre-teen and teenage years when social interaction with peers becomes more nuanced. 
• May experience high levels of anxiety at school, but mask this at school, only to display distressed behaviours once they are home.
• May have a range of techniques to compensate and hide their difficulties from teachers and staff.
• May struggle with transitions , large and small, and also with unstructured times such as break or lunch times.
• May display situational mutism (be unable to talk in certain situations)
• May experience intense empathy (including towards animals)
• May seem emotionally and socially younger than their peers.
• May display a vivid imagination. This could include developing an elaborate fantasy world or taking great joy in escaping into fiction. 
• May enjoy collecting things  – as opposed to playing with the things they collect.
• May exhibit perfectionist tendencies. 
• May stim (use self-stimulating, repetitive behaviours, such as finger clicking or spinning, to regulate or for fun) in ways that are less noticeable – small movements or internalised.
• May express strong opinions when they are not masking, and may be difficult to convince that they are wrong. 
• May have a large or advanced vocabulary.
• May find coping with their adolescent years, including getting to grips with their sexuality, relationships, and puberty, even more difficult than non-autistic teenagers. In school sex, relationships, and health education should always be differentiated to best meet the needs of children with SEND, including autistic young people.

This is not an exhaustive list, and the autistic experience will be different for each individual, who will have their own unique profile of strengths and challenges. Our Autism Awareness in Education training can also offer a more in-depth consideration of how shared areas of difference may impact autistic children and young people in general. 

Autistic Women and Girls and Mental Health

Females often receive other diagnoses before they are recognised as autistic. This includes mental health conditions, such as anxiety or depression, which could be linked to the effects of sustained masking, high levels of anxiety, and not understanding their own differences. It is also likely that individuals who present in an internal way are more likely to internalise problems too which can damage their mental health.

Securing an early diagnosis is a key priority of the UK government’s Autism Strategy 2021-2026 in order to ensure that autistic people receive effective support, and outcomes are improved. As we have seen, in the case of autistic females (and those with an internal presentation) that early diagnosis is currently less likely to happen. Therefore it is essential that education professionals, and the public in general, increase their understanding of autism, and what it means to be autistic. A wider knowledge of how autistic traits may present will help to ensure that individuals are not overlooked and that effective, individualised support can be put in place.

Further Resources:

• What is Autistic Masking?
• Autism Awareness in Education Training
• Parenting Changes to Make for Teens with Autism
• Autism Awareness Quiz
• How Does ADHD Differ in Females?
• Autism Feelings Chart for Children
• How to Support Children with Pathological Demand Avoidance (PDA)
• How to Support a Child with Autism in the Classroom
• Sensory Overload in Children
• Sensory Overload in Adults
• Autism Awareness Training

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The Early Childhood Signs of Autism in Females: a Systematic Review

• Review Paper
• Open access
• Published: 30 July 2022
• Volume 11 , pages 249–264, ( 2024 )

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• Tayla Chellew 1 ,
• Josephine Barbaro 2 &
• Nerelie C. Freeman 1  

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Compared to males, females are at a much greater likelihood of receiving a later diagnosis of autism, which impacts their opportunity to receive early support. To assist with early identification, this systematic literature review aimed to ascertain whether females differ from males in the early childhood signs of autism. The small number of heterogeneous studies made it difficult to draw conclusions, although it appears that females and males under 6 years of age are more similar than different in terms of their expression of autistic behaviours. Given the discrepant sex/gender ratio in autism, these findings highlight the importance of exploring whether there are different and/or specific, not yet identified, early signs of autism in females and males.

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Autism spectrum disorder (ASD; referred to as ‘autism’ hereafter) is a heterogeneous neurodevelopmental disorder characterised by the early developmental onset of persistent differences and/or difficulties in social communication and interaction, and the presence of restricted, repetitive patterns of behaviour and/or interests (American Psychiatric Association, 2022 ). The prevalence of autism is estimated to be one in 44 children (Maenner et al., 2021 ), with approximately four males to every female receiving a diagnosis of autism (Fombonne, 2009 ; Maenner et al., 2021 ). When synthesising population-based/non-referred samples, however, a recent meta-analysis found the male-to-female ratio was closer to three males to every female (Loomes et al., 2017 ). Such findings suggest that a diagnostic sex/gender Footnote 1 , bias exists, resulting in some autistic females Footnote 2 going undiagnosed (Dworzynski et al., 2012 ), misdiagnosed (Kentrou et al., 2019 ; Kirkovski et al., 2013 ), or diagnosed later in life compared to males (Begeer et al., 2013 ; Giarelli et al., 2010 ; Rivet & Matson, 2011 ).

Several theories have been proposed to better understand the nature of this diagnostic sex/gender bias. Due to the underrepresentation of females in both research and clinical practice, one hypothesis is that our conceptualisation of autism and the development of diagnostic criteria and assessment tools is based upon the ‘male’ presentation (Kopp & Gillberg, 1992 ; Kreiser & White, 2014 ). Additionally, many females are not referred for autism assessments until later in life, as their differences may not be attributed to autism due to it being recognised as a ‘male’ condition (Bargiela et al., 2016 ; Whitlock et al., 2020 ). A second hypothesis is the ‘female protective effect’ which proposes that autistic females are genetically shielded against autism (Robinson et al., 2013 ). There is also emerging evidence to suggest that some females present with a different phenotype of autism to males (Hull et al., 2020 ; Kirkovski et al., 2013 ; Wilson et al., 2016 ). The female autism phenotype is thought to be characterised by an altered expression of the core traits of autism, as well as possible additional characteristics that are not currently recognised by diagnostic criteria (Dworzynski et al., 2012 ; Hull et al., 2017 , 2020 ; Kirkovski et al., 2013 ; Kopp & Gillberg, 2011 ; Kreiser & White, 2014 ; Lai et al., 2015 ; Rivet & Matson, 2011 ; Van Wijngaarden-Cremers et al., 2014 ). Although no conclusive framework has yet been derived, all proposed theories may contribute to this diagnostic sex/gender bias, delaying early detection in many females and their access to early supports and services, and consequently hindering their development, mental health, and well-being (Pellicano et al., 2014 ).

To improve early detection of autism in females, understanding sex/gender differences is important. Signs of autism are said to largely manifest within the first 2 years of a child’s life (Fombonne, 2009 ; Rogers & Dilalla, 1990 ; Werner et al., 2000 ); however, evidence for sex/gender differences at a young age is conflicting. When investigating social communication and interactions (SCI), several studies have found that females have greater difficulties than males (Hartley & Sikora, 2009 ; Lawson et al., 2018 ; Rahaman et al., 2021 ; Ros-Demarize et al., 2020 ; Wang et al., 2017 ). In contrast, one study found that autistic females have less social communication difficulties (as per lower social affect scores) than males (Craig et al., 2020 ), while others found no sex/gender differences (Andersson et al., 2013 ; Carter et al., 2007 ; Reinhardt et al., 2015 ; Van Wijngaarden-Cremers et al., 2014 ). Additionally, some studies have reported fewer restricted and repetitive behaviours and/or interests (RRBIs) in autistic females compared with males (Hartley & Sikora, 2009 ; Sipes et al., 2011 ; Wang et al., 2017 ), whereas others found no sex/gender differences in this domain (Carter et al., 2007 ; Craig et al., 2020 ; Fulceri et al., 2016 ; Reinhardt et al., 2015 ; Siracusano et al., 2021 ).

The cause of inconsistencies across the sex/gender literature is complex and currently unknown, due to both similarities (e.g., measurement tools) and differences (e.g., heterogeneous sample characteristics) across studies. It has recently been suggested that a qualitative approach may help provide insight, as it can be more sensitive to capturing how females may present their autistic characteristics than a quantitative approach using overall domain/algorithm scores on standard measures (Lai & Szatmari, 2020 ; Lai et al., 2015 ). Kopp and Gillberg ( 2011 ) introduced the importance of qualitative research via item level analysis when they found that sex/gender differences were only evident after exploring individual behaviours of autism (rather than total scores). Since then, numerous studies have found significant differences between females and males, with respect to narrow constructs (i.e., subdomains of broad diagnostic domains) and/or individual behaviours of SCI (see Wood-Downie et al., 2020 for a review), and RRBIs (Antezana et al., 2019 ; Ben-Sasson et al., 2019 ). Generalising to autistic individuals across their lifespan, these results enhance our understanding of where the exact sex/gender differences in autistic traits may lie.

Focusing exclusively on individual signs of autism that emerge early in life, current research has identified a number of behaviours specific to autism across sex/gender. For example, compared to typically developing (TD) peers, young autistic children have been found to display reduced eye contact, response to name, and social smile, as well as more repetitive whole-body movements and behaviours with objects (e.g., spinning, lining up, and visually exploring; see Tanner & Dounavi, 2021 ; Zwaigenbaum et al., 2015 for reviews). To the best of our knowledge, however, no study to date has synthesised what is currently known about the sex/gender differences of such behaviours, including those pertaining to SCI, RRBIs, and additional behaviours. Therefore, this paper aimed to determine whether females differ from males in the early childhood signs of autism, by reviewing studies that investigated sex/gender differences in behaviours of autism emerging before the age of six.

This systematic review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement (Moher et al., 2009 ) and was registered with PROSPERO (CRD42021273521).

Search Strategy

Three electronic databases (PsycINFO, MEDLINE, and CINAHL) were systematically searched on 4 July 2021. Identical search terms were used across all databases that related to (1) autism, (2) young children, (3) females, and (4) early signs (see Table 1 for complete search strategy). Searches were limited to titles and abstracts, as well as studies published in English and containing human subjects. The reference lists of eligible articles were also hand-searched to identify any further relevant articles.

Eligibility Criteria

To be included in the review, studies were required to meet the following criteria: (1) female participants with a diagnosis of autism and a mean age below 6 years. Retrospective studies, including parents reporting on their child’s behaviours between the ages of 0–5, were also included; (2) analysis/investigation of individual behaviours that were consistent with autism diagnostic criteria (i.e., DSM-III, DSM-III-R, DSM-IV, DSM-IV-TR, DSM-5, ICD-9, or ICD-10); and (3) peer-reviewed quantitative and/or qualitative articles.

Studies were excluded from the review if (1) participants had no diagnosis of autism and/or the mean age was 6 years or above; (2) no distinction was made between autistic females and other participants (e.g., males or TD peers) in the analyses; (3) only broad constructs of autism, including global or domain scores (i.e., SCI and RRBIs) were reported; (4) they were published in languages other than English; and/or (5) other study designs were employed, such as case studies, single-case designs, pre-post and/or longitudinal intervention studies without baseline data, review articles, books or book chapters, dissertations, editorials, commentaries, and grey literature.

Study Selection

All potential studies were independently screened by two authors, TC and NF, to eliminate those that did not meet the inclusion criteria. Inter-rater agreement was very strong: 99% for title and abstract screening, and 88% for full-text screening. Any discrepancies were discussed and consensus was reached.

Data Extraction

Data was extracted from eligible studies by TC and reviewed by NF. Any discrepancies were discussed and agreement was achieved. Extracted data from each study included (1) publication details (including authors, date and country of research), (2) research design, (3) participant characteristics (e.g., sample size, age, sex/gender, comparison groups, diagnosis, diagnostic method), (4) behaviours investigated, (5) measure of outcome variable, and (6) relevant findings.

Quality Assessment

A critical evaluation, assessing the quality of each included article, was conducted using the Appraisal Tool for Cross-Sectional Studies (AXIS; Downes et al., 2016 ). The AXIS tool consists of 20 items that evaluate study rationale, methods, results, discussion, and other aspects of study design, as well as risk of bias. Each criterion was rated as either ‘yes’ = 1, ‘no’ = 0, and ‘do not know’ = 0. Scores ranged from 0 to 20, with higher overall scores reflecting higher quality and lower risk of bias. Papers were classified as low (0–7), moderate (8–14), or high (15–20) quality, based on classifications used in previous literature (Moor & Anderson, 2019 ; Musetti et al., 2021 ). The quality assessment of eight out of the nine included articles was completed by two independent authors, TC and NF. To minimise any bias, the quality assessment of Barbaro and Freeman ( 2021 ) was independently completed by TC and a fellow student researcher, as JB and NF were authors of this paper. Any discrepancies (< 1%) were discussed and consensus was achieved on all items.

As detailed in the PRISMA flow diagram in Fig.  1 , a total of 1760 articles were screened for eligibility, and the full text of 52 articles were reviewed. Nine articles met the inclusion criteria and are summarised in Table 2 . Articles were categorised into three broad themes, including SCI (five studies), RRBIs (five studies), and additional behaviours such as play (five studies). Four articles appear in multiple broad themes, as there were two or more unique components to each study (Barbaro & Freeman, 2021 ; Harrop et al., 2015b ; Hiller et al., 2016 ; Øien et al., 2017 ).

PRISMA flow diagram of study selection

Study Characteristics

The characteristics of eligible studies are presented in Table 2 . A total of 1844 participants were involved across the nine studies, including 592 autistic females. All nine articles compared autistic females and males, and four articles also compared autistic females to other peers, including TD (Bacon et al., 1998 ; Harrop et al., 2017 ; Knutsen et al., 2019 ), and those with an intellectual disability (ID; Bacon et al., 1998 ; Goldman et al., 2009 ; Knutsen et al., 2019 ), developmental and/or language delay (DD/LD; Bacon et al., 1998 ; Goldman et al., 2009 ). Two studies used parent-reported questionnaires to measure outcomes (Hiller et al., 2016 ; Øien et al., 2017 ), while seven studies used clinician observations (Bacon et al., 1998 ; Barbaro & Freeman, 2021 ; Goldman et al., 2009 ; Harrop et al., 2017 , 2015a , b ; Knutsen et al., 2019 ). Of the nine included studies, one involved retrospective analysis, whereby parents of older children reported on their child’s behaviours before the age of 6 (Hiller et al., 2016 ).

There was excellent agreement between appraisers (ICC = 0.971, p  < 0.001) for AXIS ratings. The quality scores for the included studies ranged from 14 to 17 out of 20 (see Table 2 ). Six out of the nine studies were rated as high quality, with three studies rated as moderate quality. Overall, weaknesses in study designs were apparent on AXIS items three and seven, as no study reported a power analysis to justify sample size, and eight out of nine studies did not address and/or categorise non-responders.

Social Communication and Interaction

Verbal communication.

One out of the three studies examining verbal communication differences in autistic females and males reported a significant difference across sex/gender (Hiller et al., 2016 ). Specifically, parent-report indicated that females had more advanced vocabulary than males (Hiller et al., 2016 ). In contrast, no significant differences were found for 2-word utterances, 5–10 words, and 20–50 words (Barbaro & Freeman, 2021 ), as well as in understanding speech/instructions (Barbaro & Freeman, 2021 ; Øien et al., 2017 ).

Nonverbal Communication

Nonverbal communicative behaviours used for social interactions were explored in four studies, with no significant sex/gender differences noted (Barbaro & Freeman, 2021 ; Harrop et al., 2015b ; Hiller et al., 2016 ; Øien et al., 2017 ). Autistic females did not differ from autistic males regarding the use of conventional gestures, such as protodeclarative pointing (Barbaro & Freeman, 2021 ; Øien et al., 2017 ), protoimperative pointing (Øien et al., 2017 ), waving (Barbaro & Freeman, 2021 ), and preparation to being picked up (Hiller et al., 2016 ). Eye contact (Barbaro & Freeman, 2021 ; Øien et al., 2017 ), initiating behavioural requests (e.g., eye contact and/or pointing), and responding to behavioural requests, was also similar across autistic females and males (Harrop et al., 2015b ).

Social-Emotional Reciprocity

Mixed results were found across three studies investigating imitation. Øien et al. ( 2017 ) found that autistic females showed less parent-reported imitation than autistic males. In contrast, Hiller et al. ( 2016 ) found that autistic females were more likely to engage in parent-reported complex imitation, such as imitation games or multiple actions than autistic males. Findings from Barbaro and Freeman ( 2021 ) found no significant differences in imitation abilities via professional observations.

Variations of sharing interest were evaluated by three studies (Barbaro & Freeman, 2021 ; Harrop et al., 2015b ; Øien et al., 2017 ). Based on parent report, Øien et al. ( 2017 ) found that autistic females were more likely to follow a finger point than autistic males. When using clinician observations, however, no differences between autistic females and males on following a point were observed (Barbaro & Freeman, 2021 ). Furthermore, no sex/gender differences were found for joint attention, including initiating and responding (Harrop et al., 2015b ), and looking where others are looking (Øien et al., 2017 ). Shared interests, including showing (Barbaro & Freeman, 2021 ; Øien et al., 2017 ), pointing to indicate interest, and attracting attention to play activities (Øien et al., 2017 ), were also similar across females and males. Additionally, there was no sex/gender difference in response to name (Barbaro & Freeman, 2021 ; Øien et al., 2017 ).

Four studies considered sharing of emotions, with no differences between sex/gender found for providing comfort (Hiller et al., 2016 ), responding to distress (Bacon et al., 1998 ), response to being held (Hiller et al., 2016 ), and response to social smile (Barbaro & Freeman, 2021 ; Øien et al., 2017 ).

Friendship Development and Maintenance

Social motivation was explored via parent-report in three out of five studies looking at SCI (Barbaro & Freeman, 2021 ; Hiller et al., 2016 ; Øien et al., 2017 ). Hiller et al. ( 2016 ) found that autistic females were more likely to desire to be liked by peers than autistic males. Barbaro and Freeman ( 2021 ) and Øien et al ( 2017 ), however, concluded that there were no sex/gender differences when it came to interest in other children. Similarly, there was no difference found for first concern about socialising behaviours (Hiller et al., 2016 ).

Restricted and Repetitive Behaviours and Interest

Stereotyped or repetitive speech, motor movements, and/or use of objects.

Five studies investigated items related to stereotyped or repetitive speech, motor movements, and/or use of objects, with mixed results (Goldman et al., 2009 ; Harrop et al., 2015a ; Hiller et al., 2016 ; Knutsen et al., 2019 ; Øien et al., 2017 ). When separating participants based on their intellectual functioning, Goldman et al ( 2009 ) identified significantly more rhythmic movements, including head/trunk and arm/hand, in autistic females (non-verbal IQ ≤ 80) than autistic males (non-verbal IQ ≤ 80). Knutsen et al ( 2019 ) also found that autistic females (IQ ≥ 70) had significantly less repetitive interests or stereotyped behaviours than autistic males (IQ ≥ 70).

In contrast, three studies found no sex/gender differences pertaining to hand, finger, and other complex mannerisms (Harrop et al., 2015a ; Knutsen et al., 2019 ; Øien et al., 2017 ), while two studies found no sex/gender differences related to repetitive behaviours, including lining up objects (Harrop et al., 2015a ; Hiller et al., 2016 ). Additionally, the two studies examining stereotyped/idiosyncratic language found no differences between autistic females and males (Harrop et al., 2015a ; Knutsen et al., 2019 ).

Sensory Interests and Sensitivities

Sensory interests and sensitivities were explored in four of the five studies investigating RRBIs (Harrop et al., 2015a ; Hiller et al., 2016 ; Knutsen et al., 2019 ; Øien et al., 2017 ). No differences were found between autistic females and males on sensory interests (Harrop et al., 2015a ; Knutsen et al., 2019 ), sensory-visual (i.e., visual inspection), and sensory aversions/sensitivities (Harrop et al., 2015a ; Hiller et al., 2016 ; Øien et al., 2017 ).

Management of Change and Fixated Interests

One study investigated fixated interests via parent-report, finding that autistic females were less likely to have interests in parts of mechanical objects than autistic males (Hiller et al., 2016 ). Hiller et al. ( 2016 ) also investigated the management of change to routine and reported no significant differences between autistic females and males.

Additional Behaviours

Five articles examined whether autistic females and males differed in behaviours not typically recognised within diagnostic manuals (e.g., DSM-5-TR; American Psychiatric Association, 2022 ) but are still recognised as being characteristic of some children with this diagnosis.

Play Behaviours

Play behaviours were investigated in five studies (Barbaro & Freeman, 2021 ; Harrop et al., 2017 ; 2015b ; Hiller et al., 2016 ; Øien et al., 2017 ); all studies found that autistic females and males were equivalent in their play. Play behaviours included complex (i.e., simple object, combination, presymbolic, and symbolic; Harrop et al., 2017 , 2015b ), pretend (Barbaro & Freeman, 2021 ; Øien et al., 2017 ), parallel (Barbaro & Freeman, 2021 ), and functional play (Øien et al., 2017 ), as well as play style (Hiller et al., 2016 ). Additionally, autistic females did not differ from autistic males and TD females in type of toy engagement (Harrop et al., 2017 ).

No significant sex/gender differences were found for aggressive behaviours, internalising problems (Hiller et al., 2016 ), health (Hiller et al., 2016 ; Øien et al., 2017 ), or loss of skills (Barbaro & Freeman, 2021 ).

There is a growing acknowledgement of a sex/gender bias that impacts autistic females receiving an appropriate and timely diagnosis. The aim of this review was to therefore gain a better understanding of the female autism presentation in early childhood by systematically reviewing studies that investigated sex/gender differences in the early signs of autism in young children (i.e., under the age of 6). Overall, there were few differences in relation to sex/gender, suggesting that autistic females and males may be more similar than different in early childhood. There was evidence for some differences between autistic females and males on a few individual behaviours associated with SCI and RRBI; however, consistent with much of the autism literature, results were often conflicting. For example, some studies indicated that autistic females have particular strengths in individual behaviours related to following a finger point (Øien et al., 2017 ), vocabulary, social desire, and imitation (Hiller et al., 2016 ). This was, however, contradicted by studies that found greater imitation difficulties in females (Øien et al., 2017 ) and/or an absence of sex/gender differences (Barbaro & Freeman, 2021 ; Øien et al., 2017 ). Similarly, some studies found significant differences between females and males for repetitive or stereotyped behaviours (Knutsen et al., 2019 ) and motor movements (Goldman et al., 2009 ), while others did not (Harrop et al.,  2015b ; Hiller et al., 2016 ; Knutsen et al., 2019 ; Øien et al., 2017 ). Implications and possible explanations for these discrepancies are discussed below.

Sample Heterogeneity

While the cause of mixed findings is likely multifactorial, the heterogeneity of this population and factors that may influence autistic traits in different individuals should be considered. Studies included in the review consisted of children with varying cognitive, verbal, and non-verbal abilities, all of which could be factors contributing to the different manifestations of autistic traits (Mayes & Calhoun, 2011 ; Rommelse et al., 2015 ; Venker et al., 2014 ). It was only when participants were separated based on their intellectual functioning that significant differences between autistic females and males related to RRBIs were found (Goldman et al., 2009 ; Hiller et al., 2016 ; Knutsen et al., 2019 ). For example, autistic females without ID had reduced repetitive interests or stereotyped behaviours (Knutsen et al., 2019 ), and less fixated interests in parts of mechanical objects (Hiller et al., 2016 ) than autistic males without ID. For females with a non-verbal IQ of less than 80, however, more stereotyped rhythmic movements were observed (Goldman et al., 2009 ). When IQ was not stratified, females and males did not differ (Harrop et al., 2015a ; Øien et al., 2017 ). This suggests that some sex/gender differences may be contingent on the level of intellectual functioning, particularly as repetitive and stereotyped motor movements are also pronounced in those with ID alone (Bodfish et al., 2000 ). Therefore, it is currently unclear whether it is autistic females or females with a certain IQ who may present with differing individual RRBIs.

Measurement Considerations

There was also heterogeneity in the measurement of early signs of autism across studies, including the use of various parent-report surveys and observational-based assessments. Measures that had not been previously trialled and/or validated were also utilised (Bacon et al., 1998 ; Goldman et al., 2009 ; Hiller et al., 2016 ), as well as retrospective reporting (Hiller et al., 2016 ).

Retrospective Analysis

Retrospective research by Hiller et al. ( 2016 ) that involved children diagnosed with autism after the age of 5 accounts for a large portion of the significant sex/gender differences found within this review. Although not evident in autistic children identified during early childhood (Barbaro & Freeman, 2021 ; Øien et al., 2017 ), results of the retrospective analysis indicated that autistic females who received a diagnosis of autism later in life demonstrated more advanced individual SCI behaviours (i.e., vocabulary, imitation, and social desire) and fewer individual RRBIs (i.e., fixated interests in parts of mechanical objects) in early childhood than males (Hiller et al., 2016 ). When similar results have been reported in previous research, they were attributed to the notion that females mask or camouflage their difficulties in social settings (Attwood, 2007 ; Wing, 1981 ). As this review focused on early childhood, however, it is unlikely that the ability to engage in such complex practices, including understanding others’ behaviour, recognising one’s strengths and difficulties, and developing strategies to compensate and reduce the appearance of autistic behaviours, would have yet been developed (Banerjee & Yuill, 1999 ; Knutsen et al., 2019 ; Pellicano et al., 2014 ). Rather, these results support the theory of a different expression of autism in some females (Hull et al., 2017 ; Kirkovski et al., 2013 ; Lai et al., 2015 ) and can provide insight into why it is more difficult to detect autism in females who may be missed at an early age. For reasons not yet known, it appears that some SCI difficulties in this subgroup of females are not as overt/recognisable as those who are diagnosed in early childhood.

Parental Reporting

Interestingly, most sex/gender differences found in this review were also the result of information provided by parents (Hiller et al., 2016 ; Øien et al., 2017 ). Such findings often lacked consistency across informants, as the same sex/gender differences were not observed by clinicians. Concerns regarding the accuracy of parent-reported data have been raised, as it is vulnerable to interpretation and recall bias (Ozonoff et al., 2008 , 2018b ). Correct recall is particularly challenging when parents retrospectively report on their children’s behaviour, as per Hiller et al. ( 2016 ), because there is a greater likelihood of errors in memory (Hus et al., 2011 ; Ozonoff et al., 2018b ). Furthermore, the reliability of parent-reported data is often questioned because parents lack the specific knowledge that professionals possess when it comes to evaluating child development (Law & Roy, 2008 ; Nordahl-Hansen et al., 2014 ). Such limitations suggest that the parent-reported sex/gender differences discovered in this review may not be a true reflection of a child’s behaviour/autistic traits.

On the other hand, some research has found that parents are usually reliable reporters (Larsen et al., 2018 ; Miller et al., 2017 ; Spikol et al., 2019 ). Parents possess the most knowledge about their child’s everyday functioning and can raise concerns about behaviours that may be missed during a standardised assessment (Horovitz et al., 2012 ; Ozonoff et al., 2018a ). Retrospective parent reporting can also help identify what behaviours were most memorable (and most likely challenging) to parents after time has passed (Tanner & Dounavi, 2021 ). Additionally, as mentioned by Øien et al. ( 2017 ), survey and interview questions can be open to interpretation depending on the wording and examples provided. Parents’ interpretation of questions may differ from clinicians (given differences in background and training) and can therefore offer perspectives that may not have been considered. Differences in informants likely contribute to conflicting findings, although both parental reports and professional observations offer valuable information. Neither should be preferred nor discounted, but rather, used together to gain a greater understanding of early childhood signs of autism.

Individual Behaviours

The significant finding from Goldman et al. ( 2009 ) highlights the importance of breaking observed behaviours down into their individual form. In children with ID, Knutsen et al. ( 2019 ) found no significant sex/gender differences for stereotyped movements, although this item on the ADOS-2 (Lord et al., 2012 ) covers a range of movements, including hand and finger, and other complex body mannerisms. Females were only noted to differ from males once motor stereotypies were categorised into specific forms (i.e., rhythmic, head/trunk, and arm/hand; Goldman et al., 2009 ). Similarly, Hiller et al. ( 2016 ) found sex/gender differences regarding fixated/repetitive interests, possibly because the item pertained specifically to parts of mechanical objects, rather than a variety of behaviours (as per item D4 of the ADOS-2; Knutsen et al., 2019 ). It seems that when individual behaviours are grouped into one item, sex/gender differences may be missed. It is only when behaviours are broken down individually that differences can be identified.

Sample Size

As per the quality analysis, a key weakness of eight out of the nine studies included in this review was the lack of power analysis to justify their sample size. Not only were more males than females included in most study samples, but several studies also reported their small sample size to be a limitation (Barbaro & Freeman, 2021 ; Harrop et al., 2017 , 2015a ). All significant findings came from studies that had some of the largest sample sizes, while some of the studies with small samples noted that their results showed trends toward significant sex/gender differences in the early signs of autism (Harrop et al., 2015a , b ). Although it cannot be said with certainty, it is possible that some of these conflicting findings and non-significant trends are a consequence of small sample sizes, and that more differences may have been reported if studies were adequately powered.

Implications

This systematic review revealed no consistent sex/gender differences in the early signs of autism — so why is it that females are at a much greater likelihood of going unidentified than males? While further research is needed, the findings indicate two possible reasons. Firstly, it may be that a female-specific manifestation of autism (i.e., phenotype) does exist, whereby some females present with an expression of autism in early childhood that does not fit with our current conceptualisation (Hull et al., 2017 , 2020 ; Kirkovski et al., 2013 ; Lai et al., 2015 ). However, earlier studies were predominantly made up of individuals who had already come to the attention of clinicians/received a diagnosis of autism, meaning their presentations aligned with existing (male-influenced) diagnostic criteria (Kopp & Gillberg, 1992 ; Kreiser & White, 2014 ). Therefore, these studies may not have included those individuals who expressed their early characteristics of autism in an unfamiliar manner, limiting our understanding of this specific manifestation. Results from Hiller et al. ( 2016 ) provide insight into this hypothesis and support the proposition that females who are most likely to present with a different expression of autism are those who go un- or misdiagnosed early in life, not those that make up clinical samples. Furthermore, while results of this review suggest that play and aggressive behaviours, internalising problems, health, and loss of skills, are additional characteristics that do not appear to differ between females and males, more research is needed and there is still a plethora of behaviours to be investigated. For example, Tanner and Dounavi ( 2021 ) reported that delayed fine or gross motor skills can be an indicator of autism. Research also suggests that demand avoidance is worth exploring (Kopp & Gillberg, 2011 ). Additional behaviours that have not yet been considered by the current literature may also make up the female presentation of autism.

Secondly, it could in fact be that females do not differ from males in the early childhood signs of autism. Although it remains unclear as to why some females are not recognised as being on the autism spectrum at a younger age, genetics, comorbidities, culture, and social and economic factors could instead be at play (Kreiser & White, 2014 ; Lai & Szatmari, 2020 ; Mazzone et al., 2012 ). It may also be that there is a subgroup of children — both female and male — who are missed very early on (potentially due to the aforementioned factors). However, further investigation would be required as there is very limited research and knowledge about later diagnosed males and their experiences, given that later diagnosed research focuses primarily on females and understanding the female autism phenotype (Bargiela et al., 2016 ; Lehnhardt et al., 2016 ).

Limitations

One limitation is the scarce amount of research in this specific field and consequently the small number of articles included in this review. Given this, the conclusions made are difficult to generalise. Conclusions drawn were also limited due to the heterogeneous nature of sample characteristics, methodology (e.g., measurement), and study findings. Additionally, as papers published in languages other than English were excluded from this review, relevant studies that provide different sociocultural perceptions of autistic behaviours were potentially missed (Harrison et al., 2017 ; Young et al., 2018 ).

While this paper set out to review the early childhood signs of autism in females, participants within and across samples spanned multiple developmental periods: infancy, toddlerhood, and preschool. Autistic traits can change across early development (Gotham et al., 2012 ; Venker et al., 2014 ), which may also correspond to sex/gender differences (Szatmari et al., 2015 ; Waizbard-Bartov et al., 2021 ). Thus, any potential differences pertaining to a specific developmental period could have been concealed by the wide-spanning age range of participants.

Future Directions

Ultimately, the contradictory findings, heterogeneous nature of autism, different study designs used, and the lack of replicated studies make it difficult to determine if any sex/gender differences in the early childhood signs of autism exist. Given this, large-scale research that utilises similar samples and methodologies is needed in this field. This will allow for comparisons across the literature and clearer conclusions to be made about autistic females. Future research should also examine IQ and age as possible factors influencing sex/gender differences. Additionally, ongoing research exploring sex/gender differences in additional behaviours not currently included in the diagnostic criteria is in the very early stages and remains of great importance (as per Lai et al., 2015 ). Future research should consider behaviours not captured in this review, such as fine and gross motor difficulties (Tanner & Dounavi, 2021 ), demand avoidance (Kopp & Gillberg, 2011 ), and novel behaviours outside those typically targeted in the literature.

Our understanding of the earliest childhood signs of autism in females who are diagnosed later in life is not well understood, partially because much of the existing research consists of young children who have already received a diagnosis (Loomes et al., 2017 ). Therefore, to better understand why some autistic females are missed early on, investigating the early childhood signs of autism specific to these later diagnosed females is key (rather than focusing on young females who have already received a diagnosis of autism). This research should consider methods such as retrospective video analysis of females and males diagnosed later in life. This will allow for observation of the earliest-presented signs of autism in females as compared to males while removing memory errors and recall bias. Interviews with parents of these children, however, can also be of value, as it will allow for interpretation and differing perspectives, as well as individual behavioural exploration (rather than grouping of behaviours).

This is the first systematic review to synthesise studies that investigated sex/gender differences in the early childhood signs of autism, including those associated with SCI, RRBIs, and additional behaviours. While there is some evidence that females differ from males on a few individual signs of autism, this review indicates that there are more sex/gender similarities than differences in the early years of life. It is, however, difficult to draw accurate conclusions based on the information available in the current literature. Further large-scale research with more homogeneous study designs is needed to disentangle the current ambiguity. Specifically, it is important to focus closely on later diagnosed females to better determine whether their early signs of autism present differently to males, and if there are signs of autism not yet identified that are specific to them during early childhood. In doing so, important findings can be shared with health professionals to allow them to better detect autism in females in a timely manner, increasing opportunities for females to access early supports and services, and ultimately enhancing their development and well-being.

The term “sex/gender” is used when discussing the differences between females and males, as the individual effects of biological sex and social gender constructs on the presentation of autism have not yet been determined (Lai et al., 2015 ).

In keeping with the preferred language of those within the autism community, “identity-first” language (i.e., “autistic person”) rather than “person-first” language (i.e., “person with autism”) is used throughout this review (Bury et al., 2020 ; Kenny et al., 2016 ).

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Chellew, T., Barbaro, J. & Freeman, N.C. The Early Childhood Signs of Autism in Females: a Systematic Review. Rev J Autism Dev Disord 11 , 249–264 (2024). https://doi.org/10.1007/s40489-022-00337-3

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Received : 01 April 2022

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DOI : https://doi.org/10.1007/s40489-022-00337-3

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