Autism Updates: ASF Goes to INSAR

May 26, 2023 — News and autism updates from ASF, the Autism Science Foundation.

Read about what ASF presented and discovered for autism updates at INSAR 2023.

Autism Does Not Mean The Same Thing to Every Person

This was a theme throughout INSAR. For some, autism is an identity, others a condition, and others a disorder. Everyone with autism is different, genetically, sociologically, demographically.  What is true of one person, even one autistic person, is not true of another. Everyone’s voice matters, but we should be doing better about including autistic voices in scientific research.

Some voices from the autism community have expressed concerns about the scientific study of autism. One roundtable discussion group of neurodiverse autistic people centered around the feeling that genetic studies will be used to eliminate people with autism. These feelings linger despite genetic studies having the clearly defined purpose of helping with autism diagnosis and treatment.

There is so much to learn from the study of genetics. Like the community itself, autism is diverse and complex. Genetic studies have helped doctors be able to recommend treatments for families with autism. The largest genetic study to date found insights into some of the biological complexities involved in autism, which can help develop new approaches to diagnosis and treatment.

As ASF Chief Science Officer Dr. Alycia Halladay said on her ASF podcast, we need to work together as a community with interactions that are not solely based in fear and anger. We can be careful about how genetics is used. But we don’t need to stop science from being done. There are a multitude of conditions that are autism. There are so many discoveries to be made that will help with diagnosis and treatment. More studies are required, not less.

ASF INSAR 2023 Get More People Involved in Autism Science

Improve Accessibility for Participants in Autism Research

Minimally verbal or intellectually disabled people are being excluded from autism research. One of the INSAR panels seeking to address this problem was “Breaking Down Barriers to Research for Children with Genetic Disorders, Intellectual Disability or Communication Challenges.“

The goal of the panel was to share methods of helping participants to ensure families can complete the assessments to help their children. The chair, Dr. Carol Wilkinson, used a Swiss cheese analogy to show that participation can’t always follow a straight line. For example, some families get started but circumstances prevent them from finishing. Or they can’t get to the clinic to start. Or they complete biological assessments but then they can’t collect IQ.

So what are the recommendations to help improve research participation from families?

  • Be flexible. Tests and protocols likely will need to be adapted for each participant. Many children on the spectrum have sensory issues. Some have challenging behaviors. Others may not understand what they have to do to participate. Researchers should look at the the difference in developmental level ratio against chronological age. In other words, don’t assume what participants can or can’t do based on their age. Skip unnecessary and non-applicable material as needed.
  • Meet them where they are at. Collect data in the most naturalistic setting where the participant feels most comfortable. Even if it means leaving your own comfortable place. Dr. Caitlin Hudac from the University of South Carolina shared how she spent 92 days on the road, collecting data from families within their own surroundings.
  • Use a personalized approach. Get as much information about your participant(s) ahead of time as possible. Examples: what’s their favorite toy, game, snack, etc.? Getting to know the people involved in research helps the family participate and improves the quality of data.
  • Plan for remote. It’s not always feasible to meet in-person with families during research. But that’s not the only way to do assessments or collect data. Dr. Karen Chenausky completed many parts of her research over Zoom, including language assessments, parent-child interactions, and motor tasks. She was able to protect the participants’ privacy and use a free downloadable app that parents used to measure language.

Autism and Aging

Internationally renowned expert Patricia Howlin from Kings College London talked about adulthood with autism. She has studied autism from birth to adulthood, seen autistic kids grow to be adults, and has used a unique longitudinal study design to address what happens to autistic kids as they get old. Unfortunately, there have not been enough studies in this area, the existing studies are designed differently, and not enough people are in each study.

We still need multiple approaches, but people with autism as they age don’t have nearly the amount of information about them as those young children. That should change. The dynamics and needs of people aging with autism are as a varied as the spectrum itself. Additional studies should be expanded with the goal of determining precise and diverse definitions of quality of life for autistic people as they age.

Autism in Females

Girls are an underserved community in autism that needs more support and better diagnostics. This was made clear through multiple presentations at INSAR. To partially illustrate, this video from SPARK for Autism shows some of the needs specific to women and girls.

Studies show higher burdens of rare genes and common genes associated with ASD and non-diagnosed family members like mothers or sisters.  This includes a South Korea study which replicated other studies with samples from around the world. There are many other traits unique to females with autism that warrant further study, including what’s called the “female protective effect” which theorizes that women and girls are better able to tolerate known genetic mutations. Multiple studies support this theory. It may help explain autism being less common among females.

Research has also shown that females with ASD are diagnosed later and tend to have a lower IQ.  But a couple of subsets of children deserve a closer look to investigate what may be part of the female protective effect. These children either showed autistic traits early in life but then didn’t meet autism criteria later, or they met autism criteria in toddlerhood but didn’t meet the diagnostic threshold at a later school age. Girls in the first group (early life autistic traits that didn’t increase with age) showed poorer language ability. Girls from the second subset (those who missed the early diagnosis) had better language and less pronounced autism features but more problems in peer relationships. Are either of these related to the female protective effect? We don’t have a clear answer yet.

Utilize The Autistic Community to Broaden Perspective

How do we work with the autistic community to conduct science that is important but at the same time communicate the importance of that science? One of INSAR’s advocate panels talked about what should be done and not done using Spectrum10k as an example.  After backlash and concerns about the study design and principal investigators, the study’s leaders went back to the drawing board. They created and documented a new process. It was made for those that believe in genetics research as well as those in the community that are fearful of it.

While there is no exact recipe, including the autism community in research should be mandatory and based on the following principles:

  • Trustworthiness; everything should be transparent, clear, and balanced.
  • Autistic-led and based on community priorities, not just the loudest voices on social media.
  • Include a diversity of voices and use engagement methods that are accessible. Provide physical and language accommodations as needed, such as type to text.
  • Ensure that something gets done, not just talked about, as part of the consultation.

Autism science and research should benefit the larger community. Including a broad range of perspectives is critical.

INSAR Videos On-Demand

Videos from INSAR plenary sessions will be available starting June 5. This on-demand content will only be available until July 10 but is free to INSAR members. INSAR Membership reopens June 1.

May 4, 2023 — News and autism updates from ASF, the Autism Science Foundation. Read about profound autism updates, see what’s happening at INSAR 2023, and watch the highlights video from ASF’s 2023 Day of Learning.

Profound Autism Article from the Child Mind Institute

“The term profound is not meant to demean anyone or label anyone as a lost cause,” said ASF President Alison Singer. “Just the opposite. The whole idea of creating this nomenclature is so we are better prepared to meet the needs of this population and not pretend they don’t exist.”

 “The main purpose was to call attention to the fact that these kids and adults exist, and that they do need different services,” said Catherine Lord, PhD, the co-chair of the Lancet Commission. 

Read the full story:

INSAR 2023

ASF President Alison Singer and Chief Science Officer Dr. Alycia Halladay are in Stockholm this week as attendees and presenters for the 2023 International Society of Autism Research annual meeting. More highlights to come soon!

2023 Day of Learning Highlights

Watch a video recap of the 2023 Day of Learning. You can watch all the presentations from every speaker on our YouTube channel.

April 26, 2023 — News and autism updates from ASF, the Autism Science Foundation.

Profound Autism Alliance Caregivers Connected Meeting with Judith Ursitti

Profound Autism Alliance Hosts Virtual Caregivers Connected Meeting

Judith Ursitti, co-founder of the Profound Autism Alliance, and ECHO autism panelists invite caregivers of profoundly autistic individuals to the first virtual Caregivers Connected meeting on April 27, 2023. The one-hour event will start at 2:00 PM EST. Join up in a supportive, empowering online environment with other caregivers and family of people with profound autism.

Sign up here to receive the Zoom link before the event.

The Profound Autism Alliance is committed to the recognition of the unique challenges that people with profound autism and intellectual disability experience. Their mission is to improve health and connection through inclusive research and focused advocacy that will result in meaningful services and supports for people with profound autism. Judith Ursitti and her daughter Amy Ursitti received the 2023 Caryn Schwartzman Spirit Award from ASF at the 2023 Day of Learning.

autism updates Alycia Halladay comments on Duke University discontinuing its EAP for children with ASD

ASF CSO Dr. Alycia Halladay on Duke University Discontinuing EAP

As reported by Vice, Duke University recently discontinued its expanded access program (EAP) to unproven stem cell and cord blood treatments for children with autism. Parents of autistic children had been paying for expensive, unproven treatments based on stem cell and blood cord treatments at Duke.

ASF’s Dr. Alycia Halladay contributed to Vice’s article, pointing out the lack of evidence supporting stem cell therapies as a safe or effective treatment for autism. ASF also worked with the International Society of Stem Cell Research to make the FDA aware of the issues surrounding the EAP.

Read the full article here.

ASF 2023 Day of Learning 10th annual

All 2023 Day of Learning Videos Now Available

Missed the Day of Learning? Watch the recordings now for updates on cutting edge research and discussions about the future of autism science!

ASF and Els for Autism invite you to join us for our next FREE webinar on June 1 at noon ET when Nicole Rosen of UCLA’s PEER Clinic will talk about her study looking at the influence of siblings on lifelong functioning in those with autism. We will also be talking about research priorities. Join us!

Register for free here:

On May 25th, join us in welcoming the exceptional Dr. Carol Wilkinson, a researcher/pediatrician from Boston Children’s Hospital, who will explain how studying brain activity in infants and toddlers leads to a better understanding and prediction of autism.
Dr. Wilkinson will unpack the different types of brainwave patterns in autism, how they are studied and how they can be used to better track the course of behavioral development for more targeted interventions.
Click here to register:

This new concept will help people at the severe end of the autism spectrum gain better access to critical services

NEW YORK — December 7, 2021 — The Autism Science Foundation (ASF), a nonprofit organization dedicated to supporting and funding innovative autism research, today calls attention to the publication of a new Lancet Commission report, which formally recognizes the need for and endorses the use of the term “profound autism” for the first time in a peer-reviewed medical journal.

The Commission reports that the term “profound autism” is critical to distinguish individuals who have high dependency needs. “Profound autism” describes autistic people who are unable to advocate for themselves and are likely to need 24-hour support throughout their lives. The concept is introduced within its new special issue, The Lancet Commission for the Future of Care and Clinical Research of Autism. The Commission was formed in 2018 by international experts who concluded that a new, comprehensive model of autism care and treatment that prioritizes personalized, stepped care approaches is urgently needed. 

“As an autism advocate and mother of a child with profound autism, I am thrilled to see The Lancet formally recognize the term profound autism, which provides critical specificity within the extremely broad autism spectrum,” said ASF Co-Founder and President Alison Singer, a member of the Lancet Commission who also just shared an op-ed published in STAT News explaining why normalizing the term ‘profound autism’ is so important.

“The term ‘autism’ is now so broadly applied that it fails to indicate the types of challenges or needs a person faces,” Singer continued. “The goal of adding this new descriptor is to enable countries and communities to plan for the appropriate treatment and service needs of this long-overlooked population, as their needs are dramatically different from those with the milder forms of autism we typically see on television and in the news media. Also, people with profound autism are also often excluded from research on Autism Spectrum Disorder (ASD), resulting in disparity in who benefits from research.

The Lancet Commission proposes that the designation of ‘profound autism’ be adopted for people with autism who are minimally verbal or non‐verbal, are not able to advocate for themselves, and require 24‐hour access to an adult who can care for them. The authors propose that the designation be used to encourage both the clinical and research global communities to prioritize the needs of this vulnerable and underserved population. The authors validated the designation of profound autism against three databases, and found that it would apply to anywhere between 18% to 48% of people with autism.

Dr. Catherine Lord, a professor at UCLA’s Center for Autism Research & Treatment, Lancet Commission co-Chair and a member of ASF’s Scientific Advisory Board, first publicly introduced the term “profound autism” at ASF’s 2020 Day of Learning, explaining that the goal was to create “useful categories that might bring attention to the different needs of different people.”

“This is not an ideological subtype. It just reflects the degree of services,” said Lord. “We hope that this will move us forward to different ways of looking at different aspects of autism.”

About the Autism Science Foundation

The Autism Science Foundation (ASF) is a 501(c) (3) public charity. Its mission is to support autism research by providing funding to scientists and organizations conducting autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. To learn more about the Autism Science Foundation or to make a donation, visit

Kathy Ehrich Dowd

Forefront Communications for Autism Science Foundation


These new data underscore the importance of early autism screening and intervention for better long-term outcomes for people with autism

NEW YORK — December 2, 2021 — The Centers for Disease Control and Prevention (CDC) today announced that 1 in 44 eight-year-old children and 1 in 59 four-year-old children are diagnosed with autism. This is an increase from the 1 in 54 number for eight-year-olds reported in March 2020 and higher than the previously reported 1 in 64 number for four-year-olds.

The new CDC data confirm that autism prevalence and diagnoses have gone up steadily in the past five years. In 2016, the CDC estimated that 1 in 68 eight-year-old children were identified with autism spectrum disorder (ASD). In 2018, 1 in 59 eight-year-old children were identified as having autism. Last year, that number rose again to 1 in 54 eight-year-olds.

ASD identification among children aged 4 years varied by site, suggesting opportunities to examine developmental screening and diagnostic practices that promote earlier identification.

The CDC also reported that a higher percentage of Black children with ASD were identified with intellectual disability compared to white or Hispanic children with ASD. This is consistent with previous reports. In addition, the prevalence of ASD among Hispanic 8-year-old children was lower than that of Black or white children in several of the 11 communities studied. The variability in ASD prevalence and community ASD identification practices among children with different racial, ethnic, and geographical characteristics highlights the importance of research into the causes of that variability and strategies to provide equitable access to developmental evaluations and services. These findings also underscore the need for enhanced infrastructure for diagnostic, treatment and support services to meet the needs of all children.

Among children aged 8 years with ASD who had data on cognitive ability, 35.2% were classified as having intellectual disability (IQ ≤70) and 23.1% were classified in the borderline range (IQ = 71–85). This is consistent with past reports.

“Today’s CDC information makes it clear that we are getting better at diagnosing autism and identifying it earlier, which is encouraging because research has consistently shown the value of early intervention,” said Alison Singer, Co-Founder and President of the Autism Science Foundation. “However, more than 58% of children identified had intellectual disability or borderline intellectual disability. This cohort of children with profound autism warrants more attention from policymakers and service providers, as their needs are dramatically different from those with milder forms of autism.”

ASF has sponsored numerous education initiatives aimed at helping families learn the early warning signs of autism. The organization has also funded numerous studies that aim to discover the earliest signs of autism and how to best treat young children after a diagnosis.

“CDC’s confirmation that autism rates are rising is a stark reminder that supporting evidence-based autism research to help the growing number of families coping with the challenges of autism is more important than ever,” said Dr. Alycia Halladay, Chief Science Officer at the Autism Science Foundation. “Although great strides have been made in diagnosing and treating autism in young children, there is still much to learn. ASF remains committed to funding and supporting autism researchers and the growing number of autism families.”

About the Autism Science Foundation

The Autism Science Foundation (ASF) is a 501(c) (3) public charity. Its mission is to support autism research by providing funding to scientists and organizations conducting autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. To learn more about the Autism Science Foundation or to make a donation, visit

Media Contact:

Kathy Ehrich Dowd

Forefront Communications for Autism Science Foundation


ASF earns distinction for the ninth consecutive year, which comes as the organization further expands funding opportunities that provide critical support to autism researchers and families

NEW YORK — September 27, 2021 — The Autism Science Foundation (ASF), a not-for-profit organization dedicated to supporting and funding innovative autism research, today announced it has received Top-Rated Nonprofit status by GreatNonprofits for the ninth consecutive year. 

The Top-Rated designation is based on the number and quality of reviews that ASF received from volunteers, donors and aid recipients. It is the only honor for nonprofits determined solely by those who have direct experience with the charities. 

This year’s award comes as ASF has expanded its funding opportunities despite the challenges associated with the pandemic. ASF funded several rounds of COVID-19 grants throughout the pandemic to address the most urgent needs in the autism community. In August, ASF added a two-year Post-Undergraduate Research Fellowship Award to its roster of funding mechanisms that support early career autism researchers: these include Pre- and Postdoctoral, Medical Student Gap Year and Undergraduate Summer Training Awards. ASF is currently seeking applications for all of these awards. Additionally, ASF has increased the funding levels for all existing awards. In July, ASF also funded four new Baby Siblings Research Consortium database grants, which help examine the very earliest signs of autism in infants with a high probability of a diagnosis.  

“ASF is honored to be named a Top-Rated nonprofit by GreatNonprofits for the ninth consecutive year,” said Alison Singer, Co-Founder and President of ASF. “This designation would not be possible without our dedicated community of donors, researchers and families, who champion the work we do. We are truly grateful for their support and are committed to making the most out of every dollar donated so we can continue to fund autism research that will lead to real breakthroughs and make a positive difference in many lives.” 

This year’s GreatNonprofits award comes as the ASF community prepares to participate in Wall Street Rides FAR (For Autism Research), the annual charity cycling and walking event benefiting ASF. The event, now in its seventh year, has raised over $2 million to date for ASF, each year attracting some of the most prominent firms on Wall Street and beyond to participate. 

This year’s WSRF will be held on October 2, 2021, once again at Saxon Woods Park in White Plains, NY. The ride offers courses for participants of all abilities – family rides of 4 and 12 miles, longer rides of 20, 30 or 62 miles, and a 5K trail walk. Since the inaugural event in 2015, the Ride has grown rapidly in terms of participants, sponsors and industry reach. WSRF will also feature two satellite rides for the first time, this year in Baltimore and Toronto. Riders from around the world can also participate in the event virtually. Click here for additional information.


Media Contact
Kathy Dowd
Forefront Communications for Autism Science Foundation

Did you know that in addition to the DoD’s support of the military, they all have funded $65 million in autism research?  This podcast discusses some of their programs and how they support military families and benefit the autism community. Want to read more about what they fund?  There’s a list here: Listen to the podcast here.

This week is focused on what happens in schools, including classification, service receipt and new interventions.  How an educational classification translates to a clinical diagnosis, how and what factors are important in receiving services, what teachers think about repetitive behaviors and finally, a new intervention that can be delivered by therapists in school or mental health settings.  They all have real-life consequences for kids who are receiving services in school. Listen to the podcast here.

There is demonstrated genetic overlap between many neurodevelopment disorders including  ASD, ADHD, and schizophrenia, and now there is data showing similarities in the structure and size of the brains in people with autism and those with ADHD.  These differences depend on how severe social difficulties are, but the similarities are seen with ASD and ADHD, but not OCD.   In addition, this week there are new depressing results from the Interactive Autism Network on unemployment and females with ASD.  The results may not surprise you, but they will upset you. Listen to the podcast here.

You may have heard the news: The prevalence of autism is 1:40 according to an email survey of parents. However, there’s more information in the study that’s worthy of consideration: The high rate of unmet mental health needs in those with ASD. Learn more on the ASF podcast. Read more about the study.