Sam’s Sibs Stick Together: The Benefits of Siblings and Future Research Directions with Nicole Rosen of UCLA

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

On May 25th, join us in welcoming the exceptional Dr. Carol Wilkinson, a researcher/pediatrician from Boston Children’s Hospital, who will explain how studying brain activity in infants and toddlers leads to a better understanding and prediction of autism.
Dr. Wilkinson will unpack the different types of brainwave patterns in autism, how they are studied and how they can be used to better track the course of behavioral development for more targeted interventions.
Click here to register: https://us06web.zoom.us/webinar/register/WN_TH_qoqG5QDidKYiAhEZV-g?utm_

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

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

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

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

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

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

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

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

###

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

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

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

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

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

While diagnosis before 3 years of age is ideal, circumstances may not always allow the earliest identification and diagnosis. This week’s podcast explores two of the reasons why diagnosis is not always possible before age 3. One is a study from Denmark and one is from members of the Baby Siblings Research Consortium.

A new study from the ASF-supported Baby Siblings Research Consortium explains why a few kids with autism do not receive a formal diagnosis until 5 years or later. Read more here.

This week, ASF wants YOUR feedback on a new paper in the Journal of Autism and Developmental Disorders, which suggests that the reason there is so much discord in the autism community is that people with autism are just too different and have difficulties understanding each other’s perspective. Is this true? What do you think? Thanks to Becca Lory, CAS, BCCS for sharing! Listen to the podcast here.