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Autism Spectrum Disorder Research at NYSCF

About ASD   ASD News     FAQs

At NYSCF, we are studying autism spectrum disorder (ASD) with stem cells from individuals with ASD to illuminate how genetics factor into a patient’s risk for developing the disorder as well as disruptions in brain development and function.

Autism Spectrum Disorder (ASD) Research at NYSCF

What is ASD?

Autism spectrum disorder (ASD) is a developmental condition caused by differences in the brain. The reasons for this differ from individual to individual. While some people may have known differences, such as changes in their DNA, many other causes are not yet known. Scientists believe there are multiple factors influencing ASD that act together to change the most common ways people develop. We still have much to learn about these causes and how they impact people with ASD.

The disorder can affect how people communicate, learn, and behave, including:

• Difficulty with communication and interaction with other people
• Restricted interests and repetitive behaviors
• Symptoms that affect their ability to function in school, work, and other areas of life

Autism is known as a “spectrum” disorder because there is wide variation in the type and severity of symptoms people experience.

How is NYSCF Using Stem Cells To Study ASD?

In collaboration with The Simons Foundation Autism Research Initiative (SFARI) and the Nancy Lurie Marks Family Foundation (NLMFF) NYSCF is creating stem cells from people with ASD to investigate what makes one person more likely to develop the disorder than another, and how genetics influence the disorder’s severity.

At the NYSCF Research Institute, we are using our own, powerful robotic platform to create stem cells for research. Our NYSCF Global Stem Cell Array® can rapidly, efficiently, and reproducibly create stem cells from skin or blood, and then reprogram these cells to become the brain cells impacted by ASD.

With these cells, we can tease apart how genetics correlate with different forms of the disease, hopefully pointing to patterns that can inform new therapies.

These stem cells will also be shared throughout the wider research community to accelerate ASD research.

Supporting Neurodiversity in STEM

It has been well established that combining diverse perspectives increases innovation and the potential for discovery, and will be...

Human Brain Cells Take Up Residence In Rat Brains to Illuminate the Secrets of Neuropsychiatric Disease

The Context: Neuropsychiatric disorders are notoriously hard to study due to their complexity and the inaccessibility of human brain...

Noopur Khobrekar Is Tackling All The Genetic Questions Of Autism Spectrum Disorder

When NYSCF – Druckenmiller Fellow Noopur Khobrekar, PhD, reflects on her career in research, she recalls an early fascination...

Studies suggest there is a genetic component to autism . Having a family health history of autism makes you more likely to have a child with autism, or to have autism yourself. How exactly one’s genetics make them more likely to develop autism requires further study, and NYSCF uses stem cells to interrogate these differences.

Not all people with autism carry intellectual disability, but about one in three people with ASD experience intellectual disability to some degree.

There is no medical test to diagnose autism, so doctors rely on analysis of behavior and development. The disorder can be detected during early childhood, but a final diagnosis typically is not made until a child is older. Learn more here .

Research is ongoing to understand how exactly autism affects the brain. Previous studies suggest differences in the structure and connectivity of the brain. NYSCF is creating stem cell models to better understand how brain cells are affected in those with ASD.

The number of children diagnosed with autism each year is increasing , but researchers indicate this increase likely reflects improvements in how we identify and diagnose the disorder rather than an increase in the number of people affected.

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The Center for Autism and the Developing Brain (CADB)

CADB is a collaborative program between NewYork-Presbyterian, Columbia University College of Physicians and Surgeons, and Weill Cornell Medical College, in partnership with New York Collaborates for Autism. Situated primarily on NewYork-Presbyterian's Westchester campus in White Plains, CADB is a resource for community-based providers, children, and families. Research and clinical faculty at CADB are committed to improving our understanding of autism spectrum disorders (ASD) and to developing innovative, more effective treatments and management approaches to improve the lives of individuals and their families.

Center for Autism and the Developing Brain 21 Bloomingdale Road White Plains, NY 10605 914-997-5848

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SUNY Empire Center for Autism Advocacy

SUNY Empire: An Autistic-Supportive College

Despite the growing number of autistic individuals who seek a college degree, the number of colleges addressing their needs is not growing fast enough. To date, no colleges offer supports for students with autism in fully online programs. CAARES in partnership with Anderson Center for Autism, is working on shaping an autistic supportive college through a multi-tiered system (MTSS) of support structure.

As CAARES heads into the 21-22 school year, we will work in partnership with SUNY Empire faculty and professional employees to provide universal supports for all students. Listening session and needs assessment findings will drive efforts to collaborate with faculty and staff to implement evidenced-based practices throughout all offices and coursework, such as streamlining procedures, clarity of expectations, and strategies and tools to increase self-management skills (i.e., executive functioning). A hierarchy of supports for faculty, staff, and students, such as consultation, peer mentorship, and workforce readiness training will be develop and implemented, with the overarching hope of better serving autistic and neurodiverse students through supports that benefit our entire university community.

We are proud to be led by an MTSS implementation team spearheaded by autistic individuals and caregivers within the autism community. The team also includes members of SUNY Empire faculty, data scientists, and behavior analysts.

Featured in the media:

• Dr. Noor Syed on Covid Conversations (February 2021)
• Dr. Noor Syed with Podcast Host Eliza Bozenski of Anderson Center for Autism (November 2020)
• ABC 50 Now: SUNY Empire to Become Fully Autism Supportive College (August 2020)

  Grants received:  

• Organization for Autism Research (2021-2023)  

Community and Professional Outreach

Parents, teachers, employers, and service providers need access to up-to-date, accurate information about autism. Working with partners across New York state and around the world, the center will provide that information, as well as education and training to parents, professionals, employers, community organizations, and others who support autistic and neurodiverse individuals. Please contact CAARES at  [email protected] if we can support you in this way, or for partnerships.

Career Support for Autistic and Neurodiverse Individuals

Coming Soon: CAARES is eager to support Autistic and Neurodiverse adults to identify and secure careers that align with their values and professional goals.

For posting, contact [email protected] .

Workforce Development for Professionals Who Serve Individuals with Autism

To help meet the increasing need for professionals who work with and support individuals with autism, the Center for Autism Inclusivity will develop academic programs that prepare professionals to work with those who have autism and provide career pathways for current professionals to hone and advance their skills.

Transfer Credit for Professional Certifications

The center has partnered with SUNY Empire’s Center for Leadership in Credentialing Learning to conduct a  Professional Learning Evaluation (PLE) of the  Behavior Analyst Certification Board’s (BACB) Registered Behavior Technician (RBT) credential and two trainings offered by Anderson Center for Autism: The Direct Support Professional and Approved Medication Administration. These evaluations provide up to 13 college credits toward an associate or bachelor’s degree at SUNY Empire for anyone with the RBT credential and any direct care staff who completed the two Anderson Center for Autism trainings.

Targeted Degree Programs

The Master of Science in Applied Behavior Analysis (ABA) program's fully online curriculum is paired with required clinical experiences to provide a rigorous, yet flexible program that prepares students to become Board Certified Behavior Analysts (BCBA) and New York State Licensed Behavior Analysts. Applied Behavior Analysts focus on the science of human behavior and the program emphasizes compassionate behavior change. Students may enroll full- or part-time and can complete the 41-credit program in as little as two years. Learn more at www.sunyempire.edu/aba  or by emailing [email protected] .

Partners, Collaboration, and Initiatives

CAARES is grateful for the partnerships and collaborations that bring its initiatives to life. If you would like to partner or collaborate, please contact CAARES at [email protected] .

Innovative Research

In collaboration with external partners, the center faculty and staff will conduct applied research on methods, tools, and practices to support autistic individuals. If you are interested in a research collaboration, contact CAARES at  [email protected] .

Current News and Events

Suny empire's autism center gets a new name.

SUNY Empire State College Officer in Charge Nathan Gonyea announced the Center for Autism Inclusivity's new name, Center for Autism Advocacy: Research, Education, and Supports, on Friday, November 12, 2021. Our new name more closely represents the center’s goal of supporting students with autism, providing the autism community with up-to-date research on autism spectrum disorders, and educating faculty and staff on how to meet the needs of students with autism in online and in-person learning environments.

CAARES is the Proud Recipient of an Organization for Autism Research Grant!

This grant will enable the development of a multi-tiered system of support framework to embed universal practices in development of an autistic supportive college. You can read more about the grant here: https://researchautism.org/creating-an-inclusive-and-supportive-campus/ .

Announcing the New Center Assistant Director

Introducing Dr. Lauren Lestremau Allen, assistant director of the Center for Autism Advocacy. Dr. Allen is a Board Certified Behavior Analyst, Licensed Psychologist (NY, MD), and a Nationally Certified School Psychologist. She joins SUNY Empire State from the Ivymount School, a non-public special education school in Rockville, MD. As a Program Director at Ivymount, Dr. Allen oversaw a program of approximately 80 students with developmental disabilities across elementary, middle, and high school divisions. She worked closely with students, families, and a multi-disciplinary team of professionals to support students to achieve their educational, independent living, post-secondary education, and employment goals. Committed to high quality service and support delivery for autistic individuals and individuals with developmental disabilities, Dr. Allen is passionate about training professionals and has served as an adjunct faculty member at Johns Hopkins University and Ball State University, where she taught applied behavior analysis courses and practica. Dr. Allen completed her doctoral schooling in school psychology at the University of Southern Mississippi and her predoctoral internship and postdoctoral fellowship in Behavioral Psychology at the Kennedy Krieger Institute through the Department of Pediatrics at the Johns Hopkins School of Medicine in Baltimore, MD. Dr. Allen’s areas of interest include the optimization of evidence-based instructional practices for autistic individuals and individuals with developmental disabilities across academic and adaptive skill domains, training and supervision of professionals, and transition-related issues for autistic individuals and individuals with developmental disabilities. Dr. Allen is excited to join the SUNY Empire State team and to work with Dr. Syed in CAARES.

Announcing the New Center Director

The center is pleased to announce the hiring of its founding director, Noor Syed, BCBA-D, LBA-LBS. Syed holds a Ph.D., M.Phil, and M.S. degree in applied behavior analysis from Teachers College, Columbia University and a B.A. in psychology applied behavior analysis from Binghamton University. She is a board-certified behavior analyst – doctoral and a licensed behavior analyst/specialist in New York, Connecticut, and Pennsylvania. She also holds birth-to-second-grade teacher certification in general education and special education. She currently serves as a verified course sequence coordinator for the Behavior Analyst Certification Board and as an authorized continuing education provider coordinator for the Behavior Analyst Certification Board. Prior to joining SUNY Empire, Syed was a professor of practice and the clinical director of Lehigh University Autism Services and the director of international partnerships for the Global Autism Project. Before academia, Syed worked in a variety of professional settings as a applied behavior analyst and special-education teacher.

Question and Answer Sessions

To ensure that the Center for Autism Inclusivity-Anderson Center partnership is grounded in the real-world needs of individuals with autism, their communities, and organizations that serve them, the Center for Autism Inclusivity and Anderson Center are embarking a virtual listening tour. Over the next several months, SUNY Empire, Center for Autism Inclusivity, and Anderson Center leadership will hold a series of question and answer sessions across New York state to learn firsthand about stakeholder needs and how the Center for Autism Inclusivity-Anderson Center partnership can help address those needs.

Recordings of Past Sessions

• Recording of August 15, 2020 Session A: For Organizations who Serve Individuals with Autism
• Recording of August 25, 2020 Session B: For Individuals with Autism and their Families
• Recording of October 26, 2020 Q & A Session

 Please send your inquiries to [email protected] .

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Institute for Autism Research

The Institute for Autism Research (IAR) is an interdisciplinary collaborative research center dedicated to understanding autism and enhancing the lives of those affected and their families. Researchers from diverse backgrounds work together to address critical questions involving causes, development, assessment, clinical treatment, and education.

This research work has led to development of several new and effective programs which are provided by IAR staff to our community partners and schools.  Researchers at the IAR are also dedicated to training the next generation of researchers and practitioners through advanced academic, research, and clinical and community-based experiences.

IAR Overview Part I IAR Overview Part II   

Support the IAR at the 7 th Annual Lend A Paw for Autism Fundraiser: Disney Dogs on April 29th

Join us for the 7 th Annual Dog Walk on the SUNY Fredonia campus hosted and organized by Hail Fredonia Records and the SUNY Fredonia's Music Industry Program.  Enjoy listening to local and student artists perform live all afternoon.  Food and drink will be available for purchase as well as tickets for raffle baskets.  Special Pup Cups (dog safe and friendly treats) will be available for all dogs in attendance!  Can't make the walk or the festivities, you can still support us through the virtual dog walk.  All proceeds will be donated to the IAR. 

Support the Lend A Paw Fundraiser for the IAR

Accepting Applications for summerMAX 2023

An empirically-validated summer psychosocial program for 7-12 year old children held at the IAR at Canisius

Learn More 

The institute has been featured in the local news and in national publications. See just a sample how the IAR has been featured in the media and check back as the institute continues to grow. 

schoolMAX is a comprehensive school-based intervention designed to address the unique profile of social-cognitive and social behavior impairments and circumscribed and repetitive behaviors and interests of elementary school-age autistic students without intellectual disability in school settings. 

• Participate in Research

The Institute for Autism Research (IAR) is an interdisciplinary collaborative research center dedicated to understanding autism and related developmental disorders and enhancing the lives of those affected and their families. Researchers from diverse backgrounds work together to address critical questions involving causes, development, assessment, clinical treatment, and education. This research work has led to development of several new and effective treatments which are provided by IAR staff to our community partners and schools

Grants are a large source of financial support for both research and clinical programming. The following is a sample of current and prior funding used to conduct studies and provide clinical services involving autistic individuals. We are grateful to all the local, state, and federal funding sources for the support.

• Clinical & Community Programs

In addition to conducting high level research, members of the IAR are committed to serving the community and autistic individuals through provision of effective intervention and treatment programs, as well as consultation with parents, educators, and clinical providers. Read more about the programs offered by members of the IAR. 

• Research Team

The IAR is a truly collaborative team that is proud of the strong relationships maintained with all members. Learn more about the people behind the research. 

Meet The Team

• Publications

Members of the IAR team have published extensively in the area of autism and developmental disorders. The following is a list of selected journal articles and book chapters on autism spectrum disorders and developmental disabilities published by members of the research team.

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Graduate and undergraduate students work closely with members of the IAR on a range of research and clinical projects that enhance their professional development.

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Autism Prevalence Rises Again, Study Finds

The pandemic may have disrupted the detection of autism spectrum disorder in young children, researchers also reported.

By Emily Anthes

The prevalence of autism spectrum disorder in American children rose between 2018 and 2020, continuing a long-running trend , according to a study released by the Centers for Disease Control and Prevention on Thursday. In 2020, an estimated one in 36 8-year-olds had autism, up from one in 44 in 2018. The prevalence was roughly 4 percent in boys and 1 percent in girls.

The rise does not necessarily mean that autism has become more common among children, and it could stem from other factors, such as increased awareness and screening.

“I have a feeling that this is just more discovery,” said Catherine Lord, a professor of psychiatry at the University of California, Los Angeles medical school, who was not involved in the research. “The question is what’s happening next to these kids, and are they getting services?”

The rise was especially sharp among Black, Hispanic, and Asian or Pacific Islander children. For the first time, autism was significantly more prevalent among 8-year-olds in these groups than in white children, who have traditionally been more likely to receive autism diagnoses.

“These patterns might reflect improved screening, awareness and access to services among historically underserved groups,” the researchers wrote.

But why the prevalence in these children has surpassed that in white children is an open question that requires more investigation, Dr. Lord said.

An accompanying study, also published on Thursday, suggests that the pandemic may have disrupted or delayed the detection of autism in younger children.

For this analysis, the researchers compared the number of autism evaluations and identifications for children who were 4 years old in 2020 to the equivalent numbers from four years earlier. In the six months before the pandemic began, autism evaluations and identifications were higher among the 4-year-olds than they had been in young children four years prior.

That is good news, Dr. Lord said. “It means we’re finding kids younger.”

But after March 2020, when the World Health Organization declared Covid-19 a pandemic, autism evaluations and detections plummeted, remaining below prepandemic levels through the end of 2020, the researchers reported.

Parents may have been less likely to bring their children in for autism evaluations during the pandemic, Dr. Lord said. The closure of schools and the shift to remote learning may have also made it harder for educators to identify children who might have benefited from evaluations or services.

“Disruptions due to the pandemic in the timely evaluation of children, and delays in connecting children to the services and support they need, could have long-lasting effects,” Dr. Karen Remley, director of the C.D.C.’s National Center on Birth Defects and Developmental Disabilities, said in a statement.

Both studies are based on data from the Autism and Developmental Disabilities Monitoring Network , which has used health and education records to track autism in communities across the United States since 2000.

The network has documented an increase in autism prevalence since 2000 , when approximately one in 150 8-year-olds were estimated to have autism.

The 2020 data come from sites in 11 states and are not necessarily representative of the nation as a whole. Data from other locations could help provide a more comprehensive picture, Dr. Lord said.

Emily Anthes is a reporter for The Times, where she focuses on science and health and covers topics like the coronavirus pandemic, vaccinations, virus testing and Covid in children. More about Emily Anthes

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Serving all communities in Bronx, Brooklyn, Manhattan, Staten Island, Queens, Westchester/Fairfield, Greater Hudson Valley, Rochester, Nassau, Suffolk and Upstate New York communities, Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families. We do this through advocacy and support, increasing understanding and acceptance of people with autism, and advancing research into causes and better interventions for autism spectrum disorder and related conditions.

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Biomedical Research

Behavioral research, gut - brain connection, special diets.

Research into effective treatments and educational programming that maximizes quality of life for those with high functioning autism and aspergers and their families. Summer Max and Max-out Social development programs include ages 4-6 and ages 7-12. After school and summer programs.

Cognitive Behavioral Therapy is used in older children and adults with ASD who are stuck in patterns of thinking and responding that are not helpful. As a result the individual with ASD interpretes everything that happens through a "meaning making system" that is skewed or inaccurate. . CBT can change the way an individual with ASD interprets situations , how they feel about those situations and how they respond to them. It is a powerful approach.

The National Center for Complementary and Alternative Medicine (NCCAM) is the Federal Government’s lead agency for scientific research on the diverse medical and health care systems, practices, and products that are not generally considered part of conventional medicine. This site is not specifically for autism, but can be used as a research tool when looking at alternative treatments. It also has information on clinical trials.

Link to an interview posted on the web site of Canadian documentary "The Autism Enigma". On October 27, 2012 the Autism Society WNY Chapter hosted a workshop "Putting the Pieces Together - Some New Developments in Autism Research" with Dr. Derrick MacFabe. The workshop was a overwhelming success and was attended by over 300 people.

On August 7, 2012, Autism Canada and the Autism Research Institute co-hosted the Scientific Symposium 2012, Exploring the Gut-Brain Connection in Autism, to explore the potential role of infectious agents in autism phenotypes. Watch video presentations by four researchers Dr. MacFabe, Dr Frye, Dr. Emma Allen-Vercoe, and Dr. Finegold.

Here is a link to many articles and research papers by Dr. Rossignol, Dr. Frye and some of their colleagues.

The Autism Research Institute has a very interesting and comprehensive article about what we currently know about implementing special diets in children with autism.

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Study of different autism types finds shared mechanism that may respond to drugs

Researchers detect similar disruptions in the neural development of genetic and unexplained autism.

An analysis of how brains with different forms of autism develop has revealed common underlying mechanisms that may respond to existing medications.

For the study, Rutgers Health researchers used a technique called induced pluripotent stem cells to transform the blood cells of people with both genetic and unexplained (or idiopathic) autism spectrum disorder (ASD) into early brain cells called neural precursor cells. As the precursor cells from both groups matured in the lab, defects in a common signaling pathway that controls structural proteins led them to struggle with an important step in cell differentiation, the growth of neurites, and the cell migration needed for proper brain architecture.

Although some cell lines exhibited too much activity in this mTOR pathway, while others exhibited too little, the researchers could correct both problems and spur better cell differentiation with existing drugs that either stimulate or inhibit the activity of mTOR (mechanistic target of rapamycin).

"Cells in a dish are not fully human cells that have developed in a fetus and functioned in a person, but they are a lot closer than mouse cells," said Emanuel DiCicco-Bloom, a professor of neuroscience and cell biology/pediatrics at Robert Wood Johnson Medical School and senior author of the study in eLife.

"This finding is particularly interesting because the process of growing new synaptic spines when people learn things is completely analogous to the processes we observed in the cells we used for this experiment: growing axons and migrating during fetal development," DiCicco-Bloom said. "So even though this experiment mimicked a process you'd see during early to mid-pregnancy, the same process involving structural proteins is happening right now in you and me, which means that if we took cells from people with autism and found this abnormal regulation of mTOR in their cells in a dish, those people might be candidates as adults for mTOR regulating drugs to improve their function."

The visible symptoms of ASD vary widely but typically feature some repetitive behaviors and some impairment in communication and social interaction. The condition's incidence has increased from about 1 in 150 children in 2000 to 1 in 36 children in 2020, according to the

Centers for Disease Control and Prevention. Roughly 10 to 15 percent of people with ASD have genes that are known to elevate their risk for ASD. Other cases are idiopathic, meaning they are unexplained.

Rutgers Health researchers began the study with blood from three unrelated people with idiopathic ASD, ages 4 to 14 years, with the expectation of finding person-specific differences in the processes occurring during development in utero. When the researchers used the pluripotent stem cell technique to transform blood cells into the sort of neuron precursors typically found in fetal brains, they unexpectedly found many similarities, including abnormalities in the mTOR pathway, which regulates cell creation, metabolism, neurite growth, remodeling and destruction, among many other functions.

The researchers then gained access to blood cells from another three patients with ASD caused by a particular genetic abnormality associated with about 1 percent of ASD, deletion of genes on chromosome 16, called 16p11.2 deletion. They performed the same experiment and found the same disruptions in neuron development.

Subsequent analysis showed that the mTOR signaling disruptions in some patients stemmed from excessive amounts of a particular molecule, while the disruptions in others stemmed from insufficient amounts. In either case, the researchers could use existing medications approved for use in other conditions to correct the problem and stimulate normal development.

The study team has already begun a follow-up investigation to see if people with ASD stemming from other genetic causes exhibit similar disruptions in mTOR activity during development. If mTOR signaling disruption proves a common feature of ASD, tests of mTOR function could help clinicians diagnose the condition more accurately and differentiate it from other conditions with similar effects.

"A couple of very rare genetic types of autism have already been linked to the mTOR pathway, but this is the first to connect mTOR with genes in the 16p11.2 area, which does not have mTOR on it, and with three presumably different types of idiopathic autism from three unrelated people," said Smrithi Prem, lead author of the study and a psychiatry resident at Penn Medicine who led the study as an MD/PhD student at Robert Wood Johnson Medical School.

"These findings also echo something that has appeared in studies of other conditions, that not all people with mTOR dysregulation have excessive activation that needs inhibition," Prem said. "There are two kinds of mTOR dysregulation, but most trials we've run on people with mTOR dysregulation have only used inhibitors. Our findings showed that cells from two of the people we studied needed more mTOR, not less, and that may spur trials that give different types of mTOR treatment to different individual patients."

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Story Source:

Materials provided by Rutgers University . Original written by Andrew Smith. Note: Content may be edited for style and length.

Journal Reference :

• Smrithi Prem, Bharati Dev, Cynthia Peng, Monal Mehta, Rohan Alibutud, Robert J Connacher, Madeline St Thomas, Xiaofeng Zhou, Paul Matteson, Jinchuan Xing, James H Millonig, Emanuel DiCicco-Bloom. Dysregulation of mTOR signaling mediates common neurite and migration defects in both idiopathic and 16p11.2 deletion autism neural precursor cells . eLife , 2024; 13 DOI: 10.7554/eLife.82809

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New Research First to Test 60-Year-Old Theory on Autism

By Emily Leclerc | Waisman Science Writer

*Note: The Travers lab has chosen to use identity first language in response to the growing preference for this type of language in the autism community. The language in this story reflects that choice.*

Autism is often associated with complex tasks like social processing and language and the later-developing brain regions that control them. But what if autism is more rooted in the earliest developing and most reflex-like part of the brain – the brainstem? This brainstem focused hypothesis about autism was put forth nearly 60 years ago by scientists but was left virtually untested due to the challenges of imaging the area in living individuals.

This new research by Brittany Travers, PhD , Waisman investigator and associate professor of kinesiology, is the first to officially test this hypothesis in children thanks to the advancements in brain imaging techniques. Her work reveals that the brainstem may indeed be central to core autism features. “It is a pivotal brain structure and deserves some attention, particularly in autism,” Travers says.

A stalk-like structure located at the base of the brain, the brainstem controls the body’s involuntary and automatic processes such as heart rate, blood pressure, breathing, digestion, and swallowing, among other functions. Even though we may not be aware of it, this autonomic nervous system – the name given to the specific bundle of nerves in the brainstem that regulate those processes – is in a constant state of responding to external and internal information.

The brainstem has reactions and sets of reactions to a variety of stimuli to try to keep our body in a state of balance, or homeostasis. Increase heart rate when this happens. Lower blood pressure when that happens. Disrupt digestion to reallocate energy when this happens. In turn, our behavior may be subtly or not so subtly affected by the underlying autonomic nervous system processing, even if we are not aware of it. So, what happens when this system is acting differently in a person?

“The brainstem is one of the earliest developing parts of the brain. So, it makes sense, in a neurodevelopmental condition like autism, that there would be differences that are happening in the brainstem that help explain the individual differences in autism,” Travers says.

Travers’ recent paper, “ Role of autonomic, nociceptive, and limbic brainstem nuclei in core autism features ” published in the journal Autism Research , shows that several core autism features, such as social communication differences and restrictive or repetitive behavior, may be directly related to the areas of the brainstem involved in autonomic functions, which may lead autistic individuals to experience or interpret the world’s stimuli in different ways.

Travers and her team utilized diffusion tensor imaging (DTI), a type of magnetic resonance imaging (MRI) that specifically measures how water diffuses through different tissue types, to look at the brainstem’s structure in autistic individuals and non-autistic individuals. Traditionally, the brainstem is a hard structure to image due to its location and the similarities in its tissue composition. DTI makes it possible to visualize the brainstem’s unique structure and tissue composition. Travers found differences in the autonomic nervous system’s structure between the two groups of participants that correlated with social communication differences and more restrictive or repetitive behavior.

DTI allowed Travers to focus specifically on the nuclei in the brainstem that are involved in our autonomic functions, pain systems, and the limbic system – which handles memory, emotion, and stress responses. “The autonomic nervous system is very much tied to the pain network and also to emotional structures. The original theories were also in line with these parts of the brainstem,” Travers says. “So, we chose to look at this particular grouping of brainstem structures.”

In particular, Travers found two nuclei in the brainstem that showed microstructural differences in autistic individuals and significant association with core autism features. The first nucleus, LPB, is involved in the pain processing system for internal organs and showed a significant relationship with an increase in repetitive behaviors. The second nucleus, PCRtA, is involved in digestion, swallowing, eating, and cardio-respiration and showed a meaningful relationship with more pronounced social communication challenges. Travers hypothesizes that structural changes in PCRtA could contribute to why it is fairly common for autistic individuals to have gastrointestinal discomfort and struggles eating or swallowing.

“This study was the first to be able to test this 60-year-old hypothesis in living children, and found that specific areas within the brainstem are linked to autism features,” Travers says. “This study directly tests and confirms this prior theory while also extending the literature to show that it is not all of the brainstem but some very specific nuclei that are involved in autonomic processing.”

Even the oldest and most rudimentary part of the brain still presents with great complexity. This work indicates that the brainstem likely plays an important role in the core features of autism but the mechanisms behind it are still a mystery. The study’s results did not reveal to Travers what exact changes to the brainstem are contributing to the core features. “We don’t know from our DTI if it is the myelination or the number of neurons or something else because we’re only looking at how water interacted with the tissues. This study helps us locate differences within the brainstem, but It brings up more questions than it solves,” Travers says. She hopes to answer those questions in future research.

“The brainstem is so important because it is this intersection between the brain and the rest of the body. So much information is transmitted through the brainstem and yet we’ve omitted it from most of our studies,” Travers says. “I’ve learned that the brainstem seems to be important in autism and it’s time that we really dug into this.”

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Mental Health for Autistic Adults: Finding the Best Provider

Why accommodation matters and how to find the right fit..

Updated March 19, 2024 | Reviewed by Ray Parker

• What Is Autism?
• Find a therapist to help with autism
• Services at the intersection of autism and mental health are lacking but essential to better life outcomes.
• Mental health accommodations go beyond sensory support, including communication tools and a strengths focus.
• Psychology Today directories can help families identify autism-informed providers.
• Factors in choosing a provider may include individualized care, family resources, and a strengths focus.

By Eric Levine, Ed.D with Becky Shipkosky

Autism spectrum disorder, or ASD, refers to a neurodevelopmental difference with which about 1% of the world’s population (World Health Organization, 2023) and 2.2% of US adults are diagnosed (Centers for Disease Control, 2023). ASD is accompanied by comorbidities in 50 to 70% of autistic people (Hours et al., 2022), many of which are mental health and behavioral disorders, including:

• Anxiety disorders, including generalized anxiety (GAD), social anxiety , and obsessive-compulsive (OCD).
• Bipolar disorder (BD).
• Disruptive mood dysregulation disorder (DMDD).
• Oppositional defiant disorder (ODD).
• Depression .
• Eating disorders.
• Suicidality .

In and of itself, autism is not a condition to be cured or recovered from, but certain aspects of life, including mental health, can be made easier and more manageable with proper support. Recent research indicates that mental health services are a tremendous piece of the support puzzle for autistic adults (Chan, Doran, 2023), and access to such services is woefully limited but growing (Maddox, Gaus, 2019).

Why Is Autism Accommodation in Mental Health Important?

At the most basic level, as Maddox and Gaus (2019) articulate, “Untreated psychiatric conditions in autistic adults are associated with a host of negative outcomes, including adaptive functioning impairments, difficulties with employment and independent living, and poor quality of life.” This unequivocally makes the case for helping autistic adults address mental health concerns, but it doesn’t get to the heart of why it’s so important to provide integrated and individualized care.

Carol Maher, Cooperriis’ neurodiversity coordinator, explains that an integrated approach provides opportunities for program participants to embrace their strengths and adapt. The key to this approach lies in the understanding that autism is an integral part of who a person is, and without space to express their full being, including autism, mental health recovery is not possible. No aspect of an individual’s self can be set aside in the recovery journey.

What Does It Look Like to Accommodate Autism in Mental Health Recovery?

While sensory toys, noise-canceling headphones, and quiet rooms are excellent steps in the direction of accommodating autism in a recovery program setting, Maher lays out some tangible communication and support tools for deeper, autism-informed accommodations (Maher 2023):

• Affirmations help reinforce strengths, successes, and efforts to change.
• Advice or feedback when appropriate, and after asking and receiving consent, can contribute to new self-awareness.
• Open-ended questions encourage participants to share their experiences and thoughts and better understand their preferences and limits. (“What was that like for you?”)
• Reflective listening, or paraphrasing a person’s feelings or words back to them, helps in building empathy and self-awareness.
• Simple encouragements, such as "You can do it" or “You’re awesome,” can have a positive impact.
• Direct, immediate commands or statements may sound rude to neurotypical people but can match an autistic person’s communication style well.
• Restricting choices to two options can prevent overwhelm.
• Encouraging individuals to consider their personal needs and the effects of their actions can provide perspective.
• Establishing a sleep and rest routine promotes recovery and better internal resources.
• A solution ladder is a helpful visual guide, detailing the first, next, and last steps to solving any problem.
• Knowing one’s own triggers and building a toolkit for coping can help any neurodivergent person thrive.

Choosing a Program With the Right Accommodations

Given the limited mental health services available to autistic adults, how can you find programs and choose the best fit for you or your loved one? Psychology Today has robust directories for both therapists and treatment centers . Upon visiting either of these pages, select your location and then select autism under the Issues tab.

Next, how do you know if something is the right fit for you or your loved one? Start with a list of therapists or residential programs who list autism among their areas of experience, and then sort for location and any insurance needs. From there, begin to call to find out if the provider is accepting new clients. At this stage, you can finally begin to screen for fit. Here are some points to consider in your search (Hansen, 2024) (Maher, 2024).

Choosing General Mental Health Services

When you’re seeking a therapist or other non-residential mental health service, consider the following:

• Autism-informed providers: Anyone who works with autistic individuals in a mental health setting should also have a comprehensive understanding of neurodiversity to provide knowledgeable and empathetic support.
• Personalized care: Support should be flexible enough to be tailored to individual needs.
• Strengths-based empowerment: Look for providers who help clients identify and leverage their unique abilities and contributions rather than concentrating on correcting perceived deficits.
• Clear and nonjudgmental communication: Look for providers who know how to engage in open, straightforward verbal communication that is free of judgment and unnecessary nuance.
• On the spectrum: While not a requirement, therapists who are themselves autistic come with a built-in understanding of what it means to be neurodivergent in a neurotypical world (Hemachandra, 2024).

Choosing a Residential Treatment Program

If you’re looking for an autism-friendly residential mental health program to help yourself or a loved one, the following qualities may also be important:

• Sensory considerations: A facility should have sensory-friendly spaces, such as areas to be alone and dining accommodations away from the noisy kitchen.
• Dietary flexibility: Whether or not you or your loved one need(s) it, a program catering to specific diets or sensitivities is a promising indicator of their commitment to comprehensive accommodation.
• Family resources: Specialized resources for families often include education and support for the all-important transition of leaving the program.
• Inclusive living model: If it’s appropriate, such as for high-functioning autistic residents, a residential program that provides a fully inclusive model can dramatically improve clients’ real-world outcomes.

While the intersection of autism and mental health is lacking, as are so many such intersections, there is hope for ongoing improvement. Advocates are working to raise awareness at the government and community levels, and autistic adults and their families can help in big and small ways by educating their community, contacting legislators and governing bodies, sitting on advisory boards, or even simply signing petitions. The Autism Self Advocacy Network is a helpful entry point for anyone looking to get involved (Hemachandra, 2024).

Autism . World Health Organization. (2023, November 15). https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disord…

Centers for Disease Control and Prevention. (2023, April 4). Data & statistics on autism spectrum disorder. Centers for Disease Control and Prevention; CDC. https://www.cdc.gov/ncbddd/autism/data.html

Hours, C., Recasens, C., & Baleyte, J.-M. (2022). ASD and ADHD comorbidity: What are we talking about? Frontiers in Psychiatry , 13(837424). https://doi.org/10.3389/fpsyt.2022.837424

Chan, D. V., & Doran, J. D. (2023). Mental health counseling is rated as most helpful by autistic adults: Service perspectives in adulthood. Autism . https://doi.org/10.1177/13623613231197446

Maddox, B. B., & Gaus, V. L. (2019). Community Mental Health Services for Autistic Adults: Good News and Bad News . Autism in Adulthood , 1(1), 15–19. https://doi.org/10.1089/aut.2018.0006

Maher, C. (2024, March 1). Neurodiversity Accommodations in Mental Health Recovery (B. Shipkosky, Interviewer) [Personal communication].

Maher, C. (2023). Tools for Success in Working with Neurodiverse Adults. Staff training document.

Hansen, C. (2024, February 21) Neurodiversity Accommodations in Mental Health Recovery (B. Shipkosky, Interviewer) [Personal communication].

Hemachandra, R. (2024, March 7). Intersection of Autism and Mental Health (B. Shipkosky, Interviewer) [Personal communication].

CooperRiis is a non-profit residential healing community for adults with mental health challenges.

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Autism Acceptance Month 2024

In celebration of Autism Acceptance Month, the Office of National Autism Coordination (ONAC) within the National Institute of Mental Health (NIMH) honors the contributions of people on the autism spectrum and the autism community to our nation and the world. We join the United Nations and the U.S. government in recognizing the needs of people on the autism spectrum and their families. Our office acknowledges the need to support, understand, accept, include, and empower people on the autism spectrum. Throughout the month of April, we will be updating this page with the latest news and events.

Beacon of Hope advocates for Autism Family Caregivers Act

O ZARK, Ala. (WTVY) -One wiregrass group traveled to Washington DC to speak with Alabama senators and a representative about the Autism Family Caregivers Act.

Beacon of Hope Applied Behavior Analysis was among those to visit Washington DC with autism speaks. It is the largest autism research organization in the country.

“They talked really in-depth about the legislation that impacts people with autism and their families,” Shelby Dipilla with Beacon of Hope.

Dipilla, the owner of Beacon of Hope ABA, knows firsthand how vital this is for the autism community.

One of those bills is the Autism Family Caregivers Act, introduced by New York Representative Grace Meng.

The act would provide funding for skills training for the family caregivers of children with autism.

“It is for the research and development of resources especially in more rural settings which is what a lot of us in Alabama would identify with,” Dipilla said.

The passage of this bill would bring the training closer to those families.

The pilot program would focus on things like caregiver response strategies and how to ensure the overall learning development of children with autism.

“A child may go and spend an hour with their speech therapist. They may spend a couple of hours with their ABA therapist but at home, it is going to be the most impactful and that is their family relationships. Those are the people who know them best and who love them and by supporting those individuals it is empowering everybody and hopefully helping that family unit be stronger and like they can help their child,” Dipilla said.

Since it was introduced, it has only been referred to the Subcommittee on Health.

Beacon of Hope was able to speak with Senators Katie Britt and Tommy Tuberville and Representative Barry Moore about this act.

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