The Lancet Commission Formally Recognizes the Term ‘Profound Autism’

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

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:

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.” 

Perry
Perry

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

Messinger
Messinger

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.

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. Listen to the podcast here.

This week two groups of heroes of autism research published studies that may not be the type of major breakthrough that the media reports on, but they are more important to families:  These studies help translate what works in the research clinic into the community.  Specifically, is it even possible, how, and what do families need to know when they receive an intervention that has yet to be “field tested”.  This is a whole field of research called implementation science, and it deals with how scientists and community services implement what is learned in research settings into real world settings. Listen to the podcast here.

This holiday weekend always triggers a reincarnation, a resurrection of the vaccine – autism hypothesis.  Many of you have read about the measles epidemics that are hitting many areas of the country.  But besides vaccines, there are other aspects of the immune system that may be linked to autism in some people.  The include family history of autoimmune disorders as well as specific genetic mutations that confer protection against subtypes of ASD.  This week’s ASF podcast will explore these theories and present different ideas on how the immune response is involved in autism, and if it is at all. Listen to the podcast here.

This week’s podcast is dedicated to the “T” in LGBTQ –  trans.  Several studies over the past few years have linked higher rates of gender variance in people with autism and higher rates of autism traits in those who are trans.  Why? Are they biologically or psychologically linked or both?  This is important for understanding, not treatment or intervention. This week’s podcast celebrates trans people who are also autistic.