Autism Research - Autism Science Foundation

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: https://childmind.org/article/what-is-profound-autism/

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!

Dr Wendy Chung at INSAR 2023 — INSAR president Dr Connie Kasari opened the INSAR 2023 meeting in Stockholm by describing how the society is meeting its goals of greater globalization. Over 2,400 people are attending INSAR from over 70 countries, with almost half of the attendees from non-North American countries.

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.

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: https://us06web.zoom.us/meeting/register/tZUrceGorDMtGdHCmM-E-kkEUM6-051r1WSz?fbclid=IwAR16eyrsYGoUIHoqY5o-yNdTilXO7ZB7vbtE5-5DvMku6bnB4uet90QpKwghttps://us06web.zoom.us/meeting/register/tZUrceGorDMtGdHCmM-E-kkEUM6-051r1WSz?fbclid=IwAR16eyrsYGoUIHoqY5o-yNdTilXO7ZB7vbtE5-5DvMku6bnB4uet90QpKwg

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 www.autismsciencefoundation.org.

Kathy Ehrich Dowd

Forefront Communications for Autism Science Foundation

617-970-5842

kdowd@forefrontcomms.com

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

Media Contact:

Kathy Ehrich Dowd

Forefront Communications for Autism Science Foundation

617-970-5842

kdowd@forefrontcomms.com

Annual charity event to benefit the Autism Science Foundation celebrates its seventh year by ringing the NYSE Closing Bell®

Wall Street Rides FAR (For Autism Research), the annual charity cycling and walking event benefiting the Autism Science Foundation (ASF), today announced that it will ring the New York Stock Exchange (NYSE) Closing Bell^® on August 30, 2021. The event, which was co-founded seven years ago by Bryan and Melissa Harkins, 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.

“We are thrilled to once again return to the floor of the iconic NYSE to promote the Ride and champion the critical mission of the Autism Science Foundation,” said Bryan Harkins, who is President of BIDS Trading and EVP, Cboe Global Markets. “What makes this event so unique and powerful is the incredible sense of community that is displayed by firms across the industry, many of which are fierce rivals during the day, coming together to support this incredible cause. In standing together with our sponsors on the podium, that sense of community is heightened, and we are indebted to them for their unwavering support.”

“ASF is incredibly grateful to the NYSE for giving Wall Street Rides FAR the opportunity to ring the bell, and to the Wall Street community, which has been so supportive of our organization,” said Alison Singer, President and Co-Founder of ASF. “The funding from Wall Street Rides FAR has made a significant impact in the lives of people with autism spectrum disorder and their families, and we look forward to another successful ride in October.”

This year’s Wall Street Rides FAR (WSRF) will be held on October 2, 2021, once again at Saxon Woods Park in White Plains. 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, last year raising $435,000. WSRF will also feature two satellite rides for the first time, this year in Baltimore, Maryland and Toronto, Canada.

WSRF attracts many of the industry’s most prominent trading and financial services firms as participants, with companies including T Rowe Price, Cboe, FTX, GTS, Paxos, XTX, Tower Research Capital and Trumid sponsoring (see the full list of sponsors here). Firms interested in joining the roster of sponsors can find more information here and individual riders interested in signing up may do so at https://wallstreetridesfar.org/register/.

All proceeds from WSRF go to the Autism Science Foundation, a nonprofit corporation that supports autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders – which today impacts 1 in 54 children – and the needs of individuals and families affected by them.

The Closing Bell will ring at 4:00 pm EDT and can be viewed live on the NYSE’s website. Photos and video of the bell ringing will be available via Facebook and Twitter @NYSE.

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Contact

Alex Hamer

Forefront Communications for Wall Street Rides FAR

ahamer@forefrontcomms.com

NEW YORK — April 13, 2020 — The Autism Science Foundation (ASF) invites applications for its new COVID-19 Pivot Grant Program. This funding is intended to help scientists manage challenges they are facing in conducting research projects due to the COVID-19 emergency.

The funding is meant to help cover new costs encountered due to adaptations or modifications of an original research plan as a result of the current shutdown across research institutions. Grants of up to $3,000 are available for a six-month term to help researchers conform to current restrictions due to the COVID-19 emergency.

“The research world has changed drastically and dramatically, practically overnight, but the needs of autism families have not,” said ASF president Alison Singer. “We must be nimble and flexible in supporting the research community so that we can continue discovering the causes of autism and developing new treatments. This new grant mechanism is just one of ASF’s many new efforts to respond quickly to the changing needs of the autism community.”

ASF intends this to be a fast-turnaround mechanism and expects to support multiple calls for awards this year. During this first round, awards will be limited to those with established university or research institution affiliation. Priority will be given to pilot or feasibility grants that were in process as well as to investigators who are in earlier stages of their careers (pre-doctoral training to seven years after post-doc completion).

“We encourage researchers to think outside the box on how to meet the challenges we currently face,” said ASF Chief Science Officer Dr. Alycia Halladay. “We have thought of some potential uses but there are certainly research situations we haven’t even contemplated that warrant support.”

Some potential uses of funds include: honoraria associated with participant retention; costs of new biological agents or preparations proposed to either pivot or readjust the research plan; direct storage costs of biological agents to preserve previously acquired samples; costs of technological platforms or technological tools to collect data from families remotely; and costs associated with making materials available to families or to other researchers.

For more information on how to apply, click here.

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 www.autismsciencefoundation.org.

Media Contact
Sam Belden
Forefront Communications for Autism Science Foundation
212-320-8986
sbelden@forefrontcomms.com

UM psychology and engineering professors are collaborating to create a program that evaluates children for autism using digital data.

While doctors agree that children can be diagnosed with autism as early as age two, the average age of diagnosis is about 4 years old. And for minority children, research indicates that age is much older.

Yet the earlier children are diagnosed, the quicker they can take advantage of interventions that can improve their lives dramatically.

This glaring disparity prompted University of Miami psychology professors Lynn Perry and Daniel Messinger to team up with electrical and computer engineering professor Mei-Ling Shyu, physics associate professor Chaoming Song, psychology assistant professor Sierra Bainter and professor Michael Alessandri, to create a more effective way to detect autism symptoms using technology.

“One of the motivators for this line of work is to improve access to an [autism] diagnosis for everyone,” Perry said, noting that a 2018 study showed that white children were accurately diagnosed 7 percent more often than black children and 22 percent more often than Hispanic children. “We know with autism spectrum disorder, having access to early intervention is key for promoting healthy developmental outcomes in language, cognition, and social interaction.”

Today, if a parent suspects their child may be on the autism spectrum, they must take them to a licensed psychologist and undergo an assessment that includes a series of structured activities, such as a pretend birthday party, popping bubbles, and blowing up a balloon. The psychologist then scores the child’s behavior to determine a diagnosis.

“Right now, the state of the art is that highly trained clinical experts make a diagnosis, but we do not have an objective measure of autism symptoms,” Messinger said. “For example, one problem that children with autism have is they often engage in less frequent eye contact, so with this project we ascertain how often they make eye contact.”

According to the Centers for Disease Control, one in 59 children are diagnosed with autism spectrum disorder (ASD) in the United States. Autism is a developmental disability that can cause social, communicative, and behavioral disabilities, but the condition affects each person in different ways. Autism affects boys three times more often than girls, research indicates.

Supported by UM’s Clinical and Translational Research Institute, the study, named BIAS, for the Behavioral

Imaging of Autism for Science, focuses on measuring social-communicative behaviors. These behaviors including language, facial expressions like eye contact and smiling, restricted interaction with others, and repetitive actions, are often key indicators that an individual may be on the autism spectrum, Perry and Messinger said.

Researchers are measuring these symptoms using special glasses, which record videos of the child’s facial expressions and movements, as well as audio recorders that capture language while each child undergoes the typical autism assessment. Computer vision software is then used to calculate and analyze the prevalence of certain behaviors, which helps diagnose the severity of autism symptoms, Perry said.

So far, 43 children between the ages of 2 and 5 have participated in the study through the Center for Autism and Related Disabilities (CARD) at UM, which is currently completing autism assessments for families throughout Miami-Dade County with funding from The Children’s Trust.

Initial trials have shown promising results, Messinger said. One program — which Shyu’s team of engineering graduate students Saad Sadiq and Yudong Tao developed — uses machine learning to analyze a child’s language skills. So far, the computer’s scores were able to match the psychologist’s diagnosis 70 percent of the time, which is nearly twice as effective as existing technology.

Shyu, Sadiq and Tao — Shyu (center), Sadiq and Tao (left to right).

“This is a step toward developing technology that can be used to assist experts in making more informed assessments,” Shyu said. “We could simply record audio when they are at home and then produce a symptom severity score.”

The professors are now looking for more participants to expand their research. They would like to have 150 families participate before the study is completed, Messinger said.

If they succeed in crafting an effective program, it could remove obstacles for families whose children often are misdiagnosed, or not diagnosed until they are much older, Perry said.

“If people live in rural or remote communities where they might not have access to expert clinicians easily, but they do have access to video, they can record a parent and child interacting, and that video can be transmitted to someone who can use this computer vision program to better recognize kids who should be getting clinical help and attention,” Perry said.

Beyond the convenience this technology could offer, UM researchers want to examine whether children diagnosed with autism in a clinic behave similarly in other settings.

“It’s assumed that across lots of different contexts – the clinic, preschool, at home, on the playground – that children’s symptoms should be similar, but we don’t actually know that the severity of behaviors or symptoms would be the same,” Perry said. “Knowing about how children’s behaviors manifest in different contexts is really important, so that interventions can help children succeed in their everyday activities.”

There are many different factors that go into successful employment for people with and without autism. As part of the ASF policy brief on employment, the US, Australia and Sweden held meetings with autistic adults, family members and employers and asked “what are the issues in your words”? Then they were mapped onto areas of functioning, not ability or disability. One thing that stands out is “matching interests and skills to job requirements”. This is important, but a complicated issue. This week’s podcast reviews what autistic people say, how it maps onto functioning and why we need to be careful about taking a one – sided approach to autism. Listen to the podcast here.

This week a 5 country collaboration including the largest number of people EVER revealed 80% of the causes of autism are heritable. This is incredibly important to understand autism and move forward with research that matters to families. What it did not do was calculate the role of gene x environment interactions which seems to be the forgotten stepchild of autism research. This week’s #ASFpodcast explains why it is important to understand the heritability while at the same time study the combined effects of genetic and environmental factors.

This week’s ASF podcast is a special treat – Dr. Daniel Geschwind from UCLA provides an understanding of the brains of people with autism, focusing on those with a mutation in chromosome 15. He goes over how they are similar and different (teaser: they are more similar) and answers questions from families about how this research is important for helping improve the lives of people across the spectrum. Listen to the podcast here.

Autism Updates: ASF Goes to INSAR