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

The use of Applied Behavior Analysis (ABA)-based therapies has recently become a point of disagreement in the autism community.  

We write this statement to share our strong support for the use of therapies based on the principles of ABA to help those on the autism spectrum, and to provide examples of how the science and research behind ABA indicate that it is safe and effective in improving the functional abilities of people with autism across the spectrum and across the lifetime.  We address four main points regarding utility of ABA principles in autism intervention:

  •  ABA is not a single protocol or technique but rather is an approach or set of techniques tailored to individual’s strengths and challenges.  

Applied Behavior Analysis encompasses a wide array of approaches to intervention, including highly structured approaches (e.g., Discrete Trial Therapy) and naturalistic approaches (e.g., pivotal response training or natural environment teaching). The goal of applied behavior analysis is to promote the acquisition of skills needed to participate successfully in daily activities.  

  • ABA type approaches have changed over time.  The type of procedures used in the 1960s are different than what it is used today.

The very first studies around ABA-based interventions were groundbreaking.  Previous to those studies which took place almost 60 years ago, parents were told that their children would never live productive lives.  These first studies included mostly positive reinforcement with some punishment, using something called discrete trial therapy (DTT).  Those early behavioral modification techniques led to children going to school and being able to be more independent.  This kept people out of institutions enabled to remain in their communities.  But as our scientific understanding of autism changed, so did the techniques used as part of ABA.   Over the past 40 years, the term ABA has evolved to include a more holistic approach that incorporates developmental and other learning theories.  Today, evidence-based autism therapies that include principles of ABA entail a much broader array of goals, assessments, supports, and accommodations that incorporate a person-led approach and encourage learning through activities that are fun and engaging.   It also promotes the use positive, rather than negative reinforcement.

The procedures involved in ABA have become more sophisticated over time and with continual knowledge about autism and how behavioral supports can improve the lives of those on the spectrum, it continues to improve (Justin B. Leaf et al., 2021).  Many critics of ABA focus on punishment. Research has shown that positive behavior supports are most effective, and the ABA field has evolved – and continues to evolve – based on a growing body of research (Frampton & Shillingsburg, 2020; Maye et al., 2020; Sandbank et al., 2020; Schmidt, Luiselli, Rue, & Whalley, 2013). ABA-based approaches, especially naturalistic, developmental behavioral approaches, incorporate ideas and practices from many other schools of thought regarding the science of learning, including developmental theory, cognitive theory, and constructivist theories. 

  • Research has shown that ABA-based interventions help people with autism.   

Hundreds of studies, reviews and meta analyses collected over 40 years of research have shown that the principles of ABA, when used correctly, can lead to progress in communication, language ability, cognitive ability, academic skills, adaptive skills, and social interactive behavior in autistic individuals (Helt et al., 2008; Rodgers et al., 2020; Smith & Iadarola, 2015; Weitlauf et al., 2014)   While ABA techniques can be used across the lifetime, most of the science conducted so far has focused on use of these techniques prior to age 10 (Howlin, Magiati, & Charman, 2009; Reichow, Hume, Barton, & Boyd, 2018; Rodgers et al., 2020; Schreibman et al., 2015).    These changes lead to meaningful gains in quality of life, like developing social connections and friendships (Kasari, Rotheram-Fuller, Locke, & Gulsrud, 2012), maintaining employment (Wehman et al., 2017) and improved independence (Hume, Loftin, & Lantz, 2009).  

ABA can also dramatically reduce problem behaviors like aggression, destruction, and self-injury.  The Certification Board for ABA therapists recommend positive rather than negative reinforcement such as punishment be implemented in behavior plans.  

  •  The goal of ABA supports and therapies is not to change the essence of who someone is, or to stigmatize non-harmful behaviors, but to lessen disability and help individuals and families with ASD reach their goals.  

It is a mistake to throw out an entire canon of techniques and principles based on criticism of past practices. The goal of ABA is to maximize communication skills and minimize challenging behaviors that limit opportunity, not to eliminate neurodiversity.  In fact, autistic adults have acknowledged the benefits of certain interventions based on the principles of ABA (Schuck et al., 2021).  Additional issues surrounding the controversies around ABA are summarized and addressed in: J. B. Leaf et al., 2021.

The Autism Science Foundation supports the use of interventions based on the principles of ABA to help individuals of all ages across the spectrum lead their best lives possible.  Of course, we strongly are against any program or therapy that harms an individual.  However, we have concluded that ABA therapy, when properly rendered in an ethical manner, is beneficial to individuals who are impacted by autism.  

References

Frampton, S. E., & Shillingsburg, M. A. (2020). Promoting the development of verbal responses using instructive feedback. J Appl Behav Anal, 53(2), 1029-1041. doi:10.1002/jaba.659

Helt, M., Kelley, E., Kinsbourne, M., Pandey, J., Boorstein, H., Herbert, M., & Fein, D. (2008). Can children with autism recover? If so, how? Neuropsychol Rev, 18(4), 339-366. doi:10.1007/s11065-008-9075-9

Howlin, P., Magiati, I., & Charman, T. (2009). Systematic review of early intensive behavioral interventions for children with autism. Am J Intellect Dev Disabil, 114(1), 23-41. doi:10.1352/2009.114:23;nd41

Hume, K., Loftin, R., & Lantz, J. (2009). Increasing independence in autism spectrum disorders: a review of three focused interventions. J Autism Dev Disord, 39(9), 1329-1338. doi:10.1007/s10803-009-0751-2

Kasari, C., Rotheram-Fuller, E., Locke, J., & Gulsrud, A. (2012). Making the connection: randomized controlled trial of social skills at school for children with autism spectrum disorders. J Child Psychol Psychiatry, 53(4), 431-439. doi:10.1111/j.1469-7610.2011.02493.x

Leaf, J. B., Cihon, J. H., Ferguson, J. L., Milne, C. M., Leaf, R., & McEachin, J. (2021). Advances in Our Understanding of Behavioral Intervention: 1980 to 2020 for Individuals Diagnosed with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 51(12), 4395-4410. doi:10.1007/s10803-020-04481-9

Leaf, J. B., Cihon, J. H., Leaf, R., McEachin, J., Liu, N., Russell, N., . . . Khosrowshahi, D. (2021). Concerns About ABA-Based Intervention: An Evaluation and Recommendations. J Autism Dev Disord. doi:10.1007/s10803-021-05137-y

Maye, M., Gaston, D., Godina, I., Conrad, J. A., Rees, J., Rivera, R., & Lushin, V. (2020). Playful but Mindful: How to Best Use Positive Affect in Treating Toddlers With Autism. J Am Acad Child Adolesc Psychiatry, 59(3), 336-338. doi:10.1016/j.jaac.2019.09.003

Reichow, B., Hume, K., Barton, E. E., & Boyd, B. A. (2018). Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Cochrane Database Syst Rev, 5, CD009260. doi:10.1002/14651858.CD009260.pub3

Rodgers, M., Marshall, D., Simmonds, M., Le Couteur, A., Biswas, M., Wright, K., . . . Hodgson, R. (2020). Interventions based on early intensive applied behaviour analysis for autistic children: a systematic review and cost-effectiveness analysis. Health Technol Assess, 24(35), 1-306. doi:10.3310/hta24350

Sandbank, M., Bottema-Beutel, K., Crowley, S., Cassidy, M., Dunham, K., Feldman, J. I., . . . Woynaroski, T. G. (2020). Project AIM: Autism intervention meta-analysis for studies of young children. Psychol Bull, 146(1), 1-29. doi:10.1037/bul0000215

Schmidt, J. D., Luiselli, J. K., Rue, H., & Whalley, K. (2013). Graduated exposure and positive reinforcement to overcome setting and activity avoidance in an adolescent with autism. Behav Modif, 37(1), 128-142. doi:10.1177/0145445512456547

Schreibman, L., Dawson, G., Stahmer, A. C., Landa, R., Rogers, S. J., McGee, G. G., . . . Halladay, A. (2015). Naturalistic Developmental Behavioral Interventions: Empirically Validated Treatments for Autism Spectrum Disorder. J Autism Dev Disord, 45(8), 2411-2428. doi:10.1007/s10803-015-2407-8

Schuck, R. K., Tagavi, D. M., Baiden, K. M. P., Dwyer, P., Williams, Z. J., Osuna, A., . . . Vernon, T. W. (2021). Neurodiversity and Autism Intervention: Reconciling Perspectives Through a Naturalistic Developmental Behavioral Intervention Framework. J Autism Dev Disord. doi:10.1007/s10803-021-05316-x

Smith, T., & Iadarola, S. (2015). Evidence Base Update for Autism Spectrum Disorder. J Clin Child Adolesc Psychol, 44(6), 897-922. doi:10.1080/15374416.2015.1077448

Wehman, P., Schall, C. M., McDonough, J., Graham, C., Brooke, V., Riehle, J. E., . . . Avellone, L. (2017). Effects of an employer-based intervention on employment outcomes for youth with significant support needs due to autism. Autism, 21(3), 276-290. doi:10.1177/1362361316635826

Weitlauf, A. S., McPheeters, M. L., Peters, B., Sathe, N., Travis, R., Aiello, R., . . . Warren, Z. (2014). In Therapies for Children With Autism Spectrum Disorder: Behavioral Interventions Update. Rockville (MD).

The Autism Science Foundation (ASF), a nonprofit organization dedicated to supporting and funding innovative autism research, today announced its fifth round of COVID-19 Research Grant recipients. The latest grantees are Dr. Allison Shana Nahmias and Dr. Matthew Lerner of Stony Brook University and Dr. Shuting Zheng, University of California San Francisco. 

This new funding will help grantees examine ways to improve mental health services for people with Autism Spectrum Disorder (ASD). One study will examine the efficacy of an online intervention to help autistic adolescents deal with pandemic stress, while another study will examine ways to improve mental health services for autistic adults.

ASF initially launched its COVID-19 grants in early 2020 to support scientists who were struggling to continue their research studies when institutions were shut down. The mechanism then evolved to fund research examining the unique effects of COVID-19 on people with autism, and to study ways to make permanent improvements to diagnoses and treatment based on service gaps the pandemic brought to light.

“The lingering mental health effects of the COVID-19 pandemic continue to impact so many people with autism. Our goal with this latest round of funding is to provide support for people in the short-term, and to examine ways to make lasting improvements to mental health services that will aid people with autism long after the pandemic is over,” said Dr. Alycia Halladay, Chief Science Officer of ASF.

The following projects have received funding:

Allison Shana Nahmias, Ph.D.

Stony Brook University

Title: Evaluating an Online Intervention to Help Autistic Adolescents Deal with Pandemic Stress 

Most mental health interventions require multiple clinician visits, can be costly, and are not feasible for many families from diverse socioeconomic communities.  This project will study the effects of a single-session intervention, successfully utilized with neurotypical adolescents during the COVID-19 pandemic, to see if it is also successful in supporting autistic adolescents. Stressful events have increased during the pandemic, resulting in additional mental health challenges throughout the ASD community.  

Shuting Zheng, Ph.D.

University of California San Francisco

Improving Mental Health Service Delivery for Individuals with Autism

Only about half of autistic adults who reported experiencing symptoms of depression during the pandemic received treatment for their depression due to problems accessing services. This project will expand a longitudinal study of autistic adults reporting their own experiences with mental health care. The goal is to better understand the different factors that support or deter mental health support, learn how autistic adults receive and prefer to receive support, and then improve the services they receive.

NEW YORK — October 12, 2021 — The Autism Science Foundation (ASF), a nonprofit organization dedicated to supporting and funding innovative autism research, today announced the first funding recipients in its ‘Next Gen Sibs’ research project. The goal of this project is to establish a future collaborative network that will help in identification, evaluation and possible diagnosis and intervention for the Next Generation: the children of typically developing siblings of individuals with autism spectrum disorder (ASD). The study will begin at two sites where adult siblings have participated in previous research tracking autism families into adulthood: Emory University (under the direction of Dr. Michael Morrier) and University of California, Los Angeles (under the direction of Dr. Catherine Lord).

This project is based on data from the Baby Siblings Research Consortium (BSRC), which has shown the rate of autism in typically developing non-autistic siblings of those with a diagnosis to be 15x that of those with no family history. Together with the results of a recent ASF-funded study – which showed an increased rate of autism in the children of siblings of autistic individuals – it is clear that future research examining heritability of ASD should expand into the next generation. This next generation needs early recognition, diagnosis and services that can help them live the most fulfilling lives possible, and in order to do that we need a better understanding of their needs. 

“ASF is incredibly proud to be funding this Next Gen Sibs project, which will play an important role in further understanding the genetic role of autism and how we can more quickly diagnose and treat young children who have a history of autism in their families,” said ASF Chief Science Officer Dr. Alycia Halladay. “Siblings who participated in research studies over 20 years ago are now adults and have expressed interest in better understanding why there is a higher rate of diagnoses in their own children, who are the nieces and nephews of autistic adults. The Next Gen Sibs project aims to find the answers these families seek.”

“The Next Gen Sibs project is an example of how ASF strives to address the most urgent questions in the autism community,” said ASF Co-Founder and President Alison Singer. “This new project is a direct result of many conversations we’ve had over the years with autism families and researchers who want to know more about the genetic factors associated with autism, and specifically how they might impact the children of typically developing non-autistic siblings. We are so grateful to our generous donors, who make this important new research project possible.”

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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

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.

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Media Contact
Kathy Dowd
Forefront Communications for Autism Science Foundation
617-970-5842
kdowd@forefrontcomms.com

This new funding mechanism offers donors even more ways to support autism science and families

NEW YORK —September 13, 2021 — The Autism Science Foundation (ASF), a not-for-profit organization dedicated to supporting and funding innovative autism research, today announced it is now accepting cryptocurrency donations via Every.org. Bitcoin, Ethereum, USD Coin, Dogecoin, Litecoin, Dai and Bitcoin Cash are all accepted.

“We are thrilled to expand our fundraising mechanisms to now include cryptocurrency, which allows both individuals and corporations yet another way to make a meaningful difference in the lives of people with autism,” said Alison Singer, Co-Founder and President of ASF. “The crypto community, through their generous backing of our upcoming Wall Street Rides FAR fundraiser, has been hugely supportive of our mission, and we’re delighted to offer them an additional way to donate.”

Many leading crypto firms – including FTX, Gemini, BlockFi, CrossTower, Paxos, Talos and Fireblocks – have signed on to sponsor Wall Street Rides FAR (WSRF), the annual charity cycling and walking event co-founded seven years ago by Bryan and Melissa Moo Harkins that has raised more than $2 million for ASF to date. This year’s Ride will be held on October 2nd and once again is attracting a who’s who of Wall Street firms. 

“With the crypto trading community further intersecting with the traditional financial world, we hoped that we’d see even more participation by crypto firms this year. But we’ve been absolutely blown away by their involvement, both in terms of ridership and sponsorship commitment,” said Brad Vopni, Head of Digital Assets for trading firm Hudson River Trading and a WSRF board member. “I know I speak for the entire board when I say that we’re thrilled to see ASF further innovate in this manner and make it even easier for this group to contribute to this extremely worthy cause.”

“Too many of us have been impacted by autism spectrum disorder (ASD) or know someone who has,” said Sina Nader, Chief Operating Officer at cryptocurrency exchange FTX.US, which is a 2021 WSRF Diamond Sponsor. “We’re very proud to support ASF’s mission to advance innovative autism science that can lead to real breakthroughs and are pleased to see them add this important new donation mechanism that will make it even easier for this generous community of ours to give.” 

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 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

Download the full white paper here.

This new funding opportunity aims to complement ASF’s Pre- & Postdoctoral and Medical Student Gap Year Fellowships, and underscores a commitment to supporting early career autism researchers

NEW YORK, Aug. 09, 2021 (GLOBE NEWSWIRE) — The Autism Science Foundation (ASF), a not-for-profit organization dedicated to supporting and funding innovative autism research, today announced the addition of a 2-year Post-Undergraduate Research Fellowship Award to its roster of funding mechanisms that support early career autism researchers.

This new fellowship is designed to support students who have received a bachelor’s degree and wish to gain more intense experience in autism research by working full-time in a lab environment for two years prior to entry into a graduate program.

The new funding mechanism complements ASF’s Pre- and Postdoctoral, Medical Student Gap Year, and Undergraduate Summer Training Awards, which have been given out annually since 2009. In addition to introducing the Post-Undergraduate fellowship, ASF has increased the funding levels for all existing awards. Applications for all awards are due by Dec. 10.

ASF has been committed to funding and supporting early career autism researchers since its founding in 2009. That dedication was apparent throughout the pandemic, as ASF funded multiple rounds of COVID-19 Grants that initially enabled many young researchers to continue their studies as research institutions shut down, and later provided them funds to study the unique effects of COVID-19 on people with autism. In June, Spectrum highlighted ASF’s efforts to support young researchers during the pandemic, and its work to study the impact of the pandemic on early career autism researchers. The results of this study were published in March.

“I am incredibly proud that ASF has been a leader in supporting early career scientists, who often have the most creative, cutting-edge hypotheses,” said ASF Co-Founder and President Alison Singer. “We are grateful to our donors for supporting our efforts to introduce these Post-Undergraduate fellowships.”

“ASF knows the importance of supporting early career researchers, so they stay in the field and build on their knowledge,” said ASF Chief Science Officer Dr. Alycia Halladay. “Their work could lead to autism breakthroughs that make a meaningful impact for years to come.”

For more information on the Post-Undergraduate Two-Year Research Fellowship Awards, click here. For more information on the Pre- and Postdoctoral and Medical Student Gap Year Training Awards, 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.

New grants will support BSRC’s efforts to understand the developmental origins and earliest signs of Autism Spectrum Disorder

New York, July 28, 2021 — The Autism Science Foundation (ASF), a not-for-profit organization dedicated to supporting and funding innovative autism research, today announced its 2021 Baby Siblings Research Consortium (BSRC) database grant recipients. The grantees are Dr. Greg Young of University of California Davis, Dr. Rujuta Bhatt Wilson of the University of California, Los Angeles, Dr. Jessica Girault of the University of North Carolina at Chapel Hill and Dr. Heather Volk of Johns Hopkins University.

The BSRC is a collaboration of more than 50 researchers and clinicians all committed to searching for the very earliest signs of autism in infants with a high probability of a diagnosis, including those with an older sibling on the spectrum. These new grants represent distinct opportunities for BSRC members to contribute to and address specific scientific questions made possible through the common BSRC database established by these investigators in 2009. ASF has provided logistical and financial support to the BSRC since 2017.

The BSRC database has supported multiple consortium-wide findings over the years, including the initial discovery of a 15x greater chance of probability in younger siblings, changes in early motor function, the broader autism phenotype, sex differences, stability of diagnoses past age 3 and biological-based markers like head circumference and genetic difference. The new grantees are expected to add more than 10,000 new datapoints through their studies.

“These new studies, which will examine fine motor skills, genetics and other familial factors, all track the same infants from birth to diagnosis, offering a unique opportunity to understand how behaviors develop over time,” said ASF Chief Science Officer Dr. Alycia Halladay. “The data these researchers collect will be used to address key questions to help improve diagnoses in infants and toddlers while also enhancing a resource that has provided important research information for over a decade.”

“ASF is proud to continue funding research conducted by members of the BSRC,” said ASF Co-Founder and President Alison Singer. “Their promising work continues to be a key to understanding the root causes of autism and identifying the best early intervention options, which will ultimately help people with autism live richer and more fulfilling lives.”

The following projects have received funding:

Principal Investigator:  Rujuta Bhatt Wilson, Ph.D.
University of California, Los Angeles
Title:  Linking Early Fine Motor Skills to the Development of Language in Infants
Motor development is one of the earliest features and benchmarks of developmental progress and is crucial in driving multiple cognitive and social processes as babies grow older. However, little is known about the relationship between very early fine motor skills and gestures in infancy, even though they are highly associated with each other and important early markers of an ASD diagnosis. Doing so may require sophisticated analytic techniques and more detailed data collected in this early time frame. This study will allow for the inclusion and analysis of item-level scores on the Mullen, a developmental measure that includes testing of motor function. This data will be paired with data on gestures at 12 months and language at 24 months to map the link between motor abilities and communication abilities later in life in those with a family history of ASD as well as those with no family history. The results of the study may inform important avenues for early intervention to improve social communication. 

Principal Investigator:  Jessica Girault, Ph.D.
University of North Carolina at Chapel Hill
Title:  Familial Factors that Drive Behavioral Development in ASD
Work of the BSRC has shown that symptom and behavioral profiles of older siblings with ASD may inform outcomes in younger siblings. This project will use family data—rather than just data from the sibling—to study how behaviors in older siblings with ASD predict the likelihood of a diagnosis, as well as how they inform patterns of behavioral development in their younger siblings during infancy and toddlerhood.  BSRC members will utilize item-level, not just overall scores, from standardized behavioral instruments from the family member with the diagnosis. Usually, this level of data is collected on the individual with autism, or the younger sibling, but not both. The results will have implications for screening and monitoring in early life by identifying cost-effective markers of diagnostic probability that can be easily obtained from families. Early identification paves the way for early intervention, which has the greatest potential to improve long-term adaptive outcomes for children and their families.

Principal Investigator:  Heather Volk, Ph.D
Johns Hopkins University
Title:  Linking Genetics to Behavior in Infant Siblings
Autism Spectrum Disorders have been shown to be highly heritable, including both common genetic variants and rare genetic variants, with common genetic variation being represented by a number called a “polygenic risk score,” or PRS.  Understanding the genetic influences of ASD can lead to better detection as well as open the doors to discovery of other heritable factors involved in ASD. This project will generate polygenic risk scores for families in the BSRC and link that data to both behavioral data at multiple time points from the child with ASD and the sibling. This data will help better characterize the biological background of families in the BSRC (including those with no family history) and will help better understand subtypes that will be meaningful for clinical interventions. 

Principal Investigator:  Gregory Young, Ph.D.
Title:  BSRC Database Oversight and Management
Dr. Young will ensure that the BSRC Database is structured to accept all new data types, assist with incorporation of new data, and maintain the database for use across all BSRC members.

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.

Dr. Halladay will play a key role in the IACC’s efforts to guide and coordinate autism research, services and support nationwide

NEW YORK — July 7, 2021 — The Autism Science Foundation (ASF), a not-for-profit organization dedicated to supporting and funding innovative autism research, today announced that its Chief Science Officer Dr. Alycia Halladay has been appointed to the influential Interagency Autism Coordinating Committee (IACC) as a public member.

IACC is an advisory panel within the U.S. Department of Health and Human Services that coordinates information and activities related to autism spectrum disorder (ASD) among federal member agencies. Each year the IACC develops a strategic plan to guide federal autism research spending and tracks spending by nonprofit organizations. It also provides a public forum for sharing recent advances in autism science and services, and increases public understanding of the member agencies’ activities, programs, policies and research. IACC also provides advice to the Secretary of Health and Human Services regarding federal activities related to ASD.

Dr. Halladay is a renowned autism scientist with a focus on bringing together researchers, advocates an community members to help improve the lives of people with autism. She is passionate about providing families with scientific information and deciphering scientific findings for the community, which she does in part through ASF’s weekly science podcast and ASF’s Days of Learning. Dr. Halladay received a Ph.D. in behavioral neuroscience from Rutgers University and joined ASF in 2014 after serving nine years as Senior Director of Research for Clinical and Environmental Sciences at Autism Speaks. She also serves as President of the Board of Directors of the Phelan-McDermid Syndrome Foundation. Dr. Halladay also has twin daughters, one of whom has ASD.

“As a scientist, a parent of a daughter with autism and also a representative of an autism research and advocacy organization, I feel I can provide a unique perspective and will make important contributions to IACC,” said Dr. Halladay. “I am grateful to be appointed to this distinguished panel and look forward to getting started.” Dr. Halladay’s appointment comes as ASF Co-Founder and President Alison Singer steps down from the IACC as the committee’s longest-serving public member, serving three four-year terms from 2007 to 2019. “Alycia’s fierce advocacy has benefited thousands of autism families and researchers over the years,” said Singer. “This new IACC appointment now ensures that even more people will benefit from her unparalleled passion and expertise. The entire autism community is fortunate that she is stepping into this role.”