Podcast | Wake. Bake. Caffeinate. Ep. 4: Autism Speaks & The $2.0 Billion Autism Market

Wake. Bake. Caffeinate. Ep. 4 Autism Angel’s: Autism Speaks

Welcome to  Wake. Bake. Caffeinate. Podcast episode 4.

Trigger Warning: Eugenics, Filicide, Murder/Suicide, functioning labels, person-first language, ableism, abuse, ABA, othering, stigma, Bob & Suzanne Wright, Harry & Laura Slatkin, Alison Singer and more. 

This week’s Deconstruction of Autism Speaks focus is back on the Town and Country article that ran in August of 2006, and very clearly outlined the original players of the autism cabal that began in 2003 … The cabal’s network has expanded over the years and become what is now known as the Autism Speaks Influence Network.  

You can find that list as I have it documented so far on InternationalBadassActivists.org and the link to it is right there on the home page. 



In this episode, I’ll be sharing a third segment Town & Country’s article “Autism’s Angels” and then share my Autistic perspective and breakdown of that segment. This part includes Autism Speaks, Cure Autism Now, NYCA, the Wrights, the Slatkins, an author named Exkorn and more. It also illustrates the lobbying by Autism Speaks to get legislation passed to have ABA and other autism therapy covered by insurances and Medicaid. 

What’s astounding is they did this even while stating it didn’t work for their child. The Wrights stated it didn’t work for their grandson. It didn’t work because they were – as Suzanne wright once stated – about 7 months too late. 

It shares author, and NYCA board member’s Karen Siff Exkorn statement that ABA was only successful with 5 – 10% of Autistics. That gives ABA a 90 – 95% failure rate. They promote ABA by it’s failure rate with the idea that early intervention will change that rate, and more Autistics would be recovered, thus lessening their lifetime burden. 

ABA would keep Autistics from breaking up their parent’s marriages and bankrupting the world. If they could just get infants diagnosed early enough and start ABA at six months … the success rate would just be astronomical right?  Why, because these parents and grandparents wanted it to be so? 

Even now, the highest success rate for ABA in a study is 50% – and that study has never been replicated.  Even the U.S. Department of Defense says it doesn’t work. It has released two reports now with the same conclusion. So these folk’s fix for ABA was more ABA,  and at younger ages. That rather sounds like the drug industry telling doctors that their opioid product wasn’t addictive, and to just prescribe more. 

And yet, here we are. In 2020, The Autism Treatment Market was valued at $2.0 Billion.  It’s forecast to be at  $2.45 billion by 2025. The report states that the Autism Treatment Programs generate $1.4 billion a year, an the medications market is worth $627 million. 

So what happened between August 2006 when the ABA industry didn’t exist and now? 

The Combating Autism Act  plus state-by-state legislation to get this ‘autism therapy’ covered by insurance and Medicaid. Autism Speaks, and with other organizations like them, lobbied for it. They were going to take the financial  burden off the parent’s back by getting insurances to help pay for this  expensive ‘autism therapy,’. 

These organizations and parent’s justified the steep upfront cost as less than the overall burden of an unrecovered Autistic over a lifetime. With the Autism Epidemic, these Autistics would bankrupt the world when they became adults. They were already breaking up their parent’s marriages and families. 

And, unlike in 2006, today legislation is in place in all 50 states to cover this autism therapy. Insurance coverage for Autistic kids is now at 64%. The top 9 for-profit chains are estimated to have posted revenue of $547 million in 2019.

The report also lists Autism Speaks as one of the main players in this market. 

And last, but not least, Autism Speaks announced their launch of Autism Cares Network earlier this year … it’s touted as a 20-site  “learning health network.”

The Autism Care Network is the latest reiteration of the Autism Treatment Network. ATN was a Cure Autism Now project that merged with Autism Speaks in 2007. 

Coming up: Community News (ASAN posted a statement today), Autism’s Angels pt. 3 article, I’ll share my autistic perspective in a summary after, and then more details about the autism therapy market and Autism Speaks Autism Cares Network.

Plus, music by Bill Reiland and his version of “A Million Reasons” and “Eve of Destruction.”


Community News

ASAN, 35 Advocacy Organizations File Amicus Brief Supporting Civil Rights Laws


Deconstruction of Autism Speaks: Town & Country’s Autism’s Angels, Pt. 3

DECONSTRUCTION OF AUTISM SPEAKS | TOWN & COUNTRY: AUTISM’S ANGELS | PT. 3


Song: Million Reasons via Bill Reiland


Deconstruction of Autism Speaks: Town & Country: Autism’s Angels, Pt. 3 – Summary from an Autistic perspective

Autism Speaks was founded by Bob and Suzanne Wright in 2005. Their goal in launching the organization was to raise ‘ autism awareness’ and dollars for autism research.

The Wrights are grandparents of an Autistic. Their daughter, Katie Wright, is mom to Christian. The Wrights state that their grandchild lost his 800-word vocabulary, and had severe meltdowns and other changes as a toddler. This happened after the birth of his sibling, and a move to a new family home. The Wrights ‘witnessed’ medical science’s helplessness, and decided to do something about it.

Wright was not satisfied when doctors told him that there wasn’t a ‘medical abnormality’ his grandson had that they could treat. Wright was further informed that many Autistic children did develop medical problems, and that these could be treated if and when they occurred. This shocked the entire Wright family. There was nothing that could be done for this child? Well, that just wasn’t good enough.

Bob Wright stated his family went to Columbia University Medical Center for an assessment of his grandson. However, the assessment, diagnosis, and any form of autism treatment wasn’t covered by health insurance. Wright had to pay $10k out-of-pocket to cover the medical expense. The hefty price tag for a diagnosis isn’t one most families can comfortably afford. At that time, most insurance companies didn’t cover any autism-related expenses. Due to the lobbying of Autism Speaks, and their influence network, all states now require insurances to cover these costs, including ABA.

With Medicaid and insurances now covering ABA therapy, the industry has exploded and is now valued at $2.1 billion a year. The ABA market is expected to grow to $2.45 billion by 2025.

In 2006, the Wrights spoke to others about their grandson’s diagnosis, and soon realized they were in the midst of an “Autism Epidemic.” This NBC executive and his family decided something must be done to avert the impending ‘autistic crisis’ the world just couldn’t afford. The Wright’s predicament captured the attention of philanthropist, and Home Depot founder, Bernie Marcus. He donated $25 million to jump-start the organization, Autism Speaks.

The goals of Autism Speaks were twofold: Raise awareness and raise money for scientific and biomedical research. Bob and Suzanne Wright believed if you built the awareness then the funding would come. And oh my, with their tragedy-narrative brand of ‘autism awareness’ millions upon millions of dollars were indeed raised

In the early 2000s, medical professionals told the Wrights that their grandson couldn’t be treated unless he developed a medical abnormality. The Wrights were told Autism is a developmental disability and you could treat many co-morbidities, but you can’t treat autism itself. 

What the doctors told them then, remains the same now in 2021: You can’t treat or cure autism, but you can treat some co-morbidities and increase the quality of life of the Autistic individual.

To be very clear, if you’re Autistic: You’re born Autistic and you’ll die Autistic. (Well, unless, CRSPR or some other gene editing discovery becomes viable in the future, this is how it is. Born Autistic, always Autistic.)

Bob Wright states: “Out of the $29 billion NIH budget, autism gets only $102 million. AIDS gets $2.9 billion, and breast cancer gets $700 million, as they should, but people need to understand that this is the most prevalent childhood developmental disorder in the United States.

Fact: Autism is not a disease.

Yes, Bob, autism is a developmental disorder and difference, but it’s not at all like cancer, AIDS or even Alzheimer’s. The comparison to diseases by Autism Speaks founders, and other folks related to this organization, continues today.

Autism Speaks raised more than $40 million their first year. They also touted they raised ‘untold levels of awareness.’ This ‘awareness’ happened because the Wrights used their power and status to leverage every opportunity to be heard – and drowned out the voices of the Autistic people who were protesting their organization and work to ‘cure’ us.

The year after they launched, Autism Speaks promoted the 5-part documentary series, “Autism: The Hidden Epidemic.” It aired on the Today Show, and afterwards they ‘invited’ Bob and Suzanne Wright on as guests. Yeah, ‘invite’ is a stretch. Let’s remember Bob Wright is the NBC chairman and CEO until 2007. Prior to NBC, he held several positions at General Electric in the 1960s, 70s and 80s. He served as President and CEO of GE Capital, GE Financial Services from 1983 to 1986, and served as GE’s vice chairman until he retired from that role in 2008.

Simply stated: If Bob Wright wants his Autism Speaks’ documentary aired on NBC, then Bob Wright gets his documentary aired on NBC. He’s the boss. He’s the bosses boss.

This is a power and privilege that most Autistics have never had and never will have.

The Wrights were also guests on The View, Charlie Rose, and Don Imus’s radio show.

Autism Speaks went on to partner with the AdCouncil and launched a 3-year public-service ad campaign. The PSA campaign went full-force with the Autism Speaks hallmark tragedy and fear narrative. Autism Speaks is still partnered with the AdCouncil today. That means all PSAs by the AdCouncil regarding autism have been shaped by Autism Speaks parent-led organization, not Autistic people. These PSAs have done much harm to the Autistic community.

“Odds of a child performing at Carnegie Hall: 1 in 73,000. Odds of a child being diagnosed with autism: 1 in 166.”

PSA by AdCouncil in partnership with Autism Speaks.

The Wrights’ and Autism Speaks board members’ power and privilege was leveraged, knowingly, at Autistic people’s expense. Our voices were muted, and often silenced, by the uproar of non-Autistic parents, celebrities and professionals speaking the Autism Speaks party line.

Celebrities were part and parcel of Cure Autism Now (CAN) outreach. These star influencers were already hawking the autism tragedy narrative for filmmaker Jon Shestack and his wife, Portia Iverson. When Autism Speaks and CAN joined forces that’s when the star power really exploded. Every famous person speaking about autism was a voice for Autism Speaks, and organizations like them. The harm celebrities have caused the Autistic community with their influence and brand of ‘autism awareness’ is devastating and immeasurable.

This silencing wasn’t unintentional by the founders and board members of Autism Speaks. It was their goal to be the loudest voice on autism in the nation, and therefore garner the most dollars for research, and leverage the most influence to pass legislation on the autism therapies they promoted and liked. In order to do this, Bob Wright merged Autism Speaks with other autism organizations. The first of these organizations was National Alliance for Autism Research (NAAR) in 2006. Autism Speaks merged with Cure Autism Now (CAN) in 2007.

Now, here’s where we get to the point and goal of the article: The Combating Autism Act.

The Combating Autism Act was introduced in 2005, and signed into action by President George W. Bush in 2006. The bill would authorize almost $1 billion for research over a five-year period.

“Not enough studies are done on children with autism to draw conclusions about its causes, and that’s extremely frustrating to parents,” said Bob Wright. “Autism is a 24/7 problem. The children have to be looked after all the time, and the parents tend to be exhausted and broke. They don’t have the time or resources to do many things, so we are trying to speak for them.”

Yes, Bob Wright just said that Autism Speaks is trying to speak for tired and broke parents. There’s no mention of any Autistics who already have a voice and were being ignored, belittled, dehumanized, diminished, and silenced by Autism Speaks. Nope, not a chirp there.

The Wrights weren’t the only big-money players in the ‘World of Autism.’ Jim and Marilyn Simons pledged $138 million for autism research over a five-year span. One of the Simon’s Foundation’s first grants was $13 million for a five-year genetic study by Michael Wigler, Ph.D. and Jonathan Sebat, Ph.D. Both professionals were from Cold Spring Harbor Laboratory, home to one of the DNA decoders, James Watson. This research focused on genome scans of Autistic children’s nuclear families and compares them to non-Autistic genomes to seek autism-linked mutations.

Wigler and Sebat utilized DNA procured by Cure Autism Now (CAN). CAN funded research to collect DNA from families with more than one Autistic child. They collected blood samples to create a gene bank.

The first giant ‘eureka’ moment that will make the big pharmaceutical companies feel there’s something there has not come yet, but I’m confident that it will.”

Jon Shestack, founder of Cure Autism Now (CAN)

The article states: Until that time arrives, everyone agrees that early diagnosis and intervention – the earlier, the better – are the keys to a brighter prognosis.

Everyone agrees? Who is everyone? Definitely not the Autistic activists that had been protesting the work of Cure Autism Now, Autism Speaks and all of the other cure-driven organizations like them for decades already. Recently, many of these organizations have shifted to ‘inclusion’ and softer marketing around the genetic studies they fund – but they’re all still making choices about us without us. During Autism Speaks’ Reign of Silence, Autistic Elders have continued their activism work, and been busy teaching and educating younger generations about their history, culture and people.

Today, many Autistic activists are parents of Autistics too. The majority of us have raised our children to take pride in our genetic heritage. Many of our children have grown and are adults now, and autistic self-advocates too. As a parent, I’ve taught my children they are worthy of far better than stigma, othering, hate, conversion therapy and cures. I taught them Autism Speaks idea of autism does not define them. Autism Speaks doesn’t speak for my children. They don’t speak for my family. They don’t speak for me. I’ve taught my children, and any other Autistic possible, they are worthy of far, far better than Autism Speaks, and organizations like them.

You can now hear the roar of Autistics on various social media platforms under the tag #actuallyautistic.

The entire push of this article is to promote Applied Behavioral Analysis (ABA) and create a false hope for an ‘autism cure’ or some type of ‘autism recovery.’ It’s to tout early diagnosis and early intervention with ‘autism treatments’ like Autistic conversion therapy. It’s to push for the support of the Combating Autism Act of 2006, that was signed four months after the publication of this article – “Autism’s Angels” – in the Town & Country magazine.

These Autism Speaks-affiliated parents have all spoken to the ‘dark truth’ of their thoughts on fillicide and suicide because they claimed parenting an Autistic was so difficult. These parents justified their ‘honesty’ in the documentaries that were seen worldwide, and they exposed their child’s most vulnerable and private moments to all. This was done for what, autism awareness?

“Build awareness,” said the Wrights, “and the funding will come“

So, yes, in this context, these parents’ ‘autism awareness’ campaigns were about raising money to fund research. Research that would promote ABA as the great hope for autism. Research that would continue to look for a vaccine – autism link, years after Andrew Wakefield was proven a fraud and liar. And research that would ultimately find a cure for autism. Mind you a cure for autism would be a test during pregnancy that determined ‘autism risk.’ Preventing the birth of an Autistic child is the cure for autism. This is the same cure society has for Down Syndrome. It’s eugenics 2021.

Fact: Vaccines do not cause autism.

Until the great cure for autism could be found, the only hope for Autistics already born was Applied Behavioral Analysis. Yes, the same ABA that had a failure rate of 90 – 95% as stated in the article. The great hope is that early intervention, the earlier the better, would increase the success rate of ABA with Autistic children.

The reason Autistics aren’t included in any quotes, or seen in any of this advocacy, is because Autistic activists were kicked to the curb. Autistics fought the use of conversion therapy and definitely didn’t support passing legislation to force insurance companies to cover the cost.

“With early intervention, we’re seeing many more kids doing much, much better. Right now getting a diagnosis and early intervention for a child of three is a big deal; but eventually, we’re going to get these services at six months. … In March I gave a conference on how to help autistic kids who go to college. Ten years ago, I’d never have thought it would happen.”

Fred Volkmar, M.D. of the Yale Child Study Center

The article goes on to state:

For a handful of children, early intervention has led to the almost unthinkable: actual recovery.

Then in parenthesis immediately after it states:

Although, technically, autism is not curable, a child can advance to the point where he or she no longer meets the clinical diagnostic criteria for the condition.

Yeah, even the article can’t make a straight statement without some sort of circular speak.

Fact: You can’t cure Autistics from being Autistic.

Fact: You can’t recover an Autistic from being Autistic.

Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.

Guess what? This ‘autism recovery’ happened for one parent’s child. At least that’s what Karen Siff Exkorn said about her Autistic child. Exkorn was a former management consultant, and the author of the book, “The Autism Sourcebook: Everything You Need To Know About Diagnosis, Treatment, Coping, and Healing.”

Autism Speaks and other cure-motivated organizations were involved with the writing of this book, and they heavily promoted it as well.

This book would be pushed worldwide to parents. The names printed on the book might look familiar … the foreword of the book is by Fred R. Volkmar, M.D. of Yale University Child Study Center.

Praise for the book is given by Tom Insel (NIMH), Lee Grossman (Autism Society of America), Karen Margulis London (NAAR), Peter Gerhardt (The Organization for Autism Research), Stephen Shore (author), Karen Simmons (Autism Today), Shelley Hendrix Reynolds (Unlocking Autism), Marianne E. Felice (UMASS Memorial Children’s Medical Center), Ann DiChiara (Foundation for Educating Children with Autism, Inc.).

Testimonies on the back cover include: Temple Grandin (Autistic author), Suzanne and Bob Wright (Autism Speaks), and Geraldine Dawson (University of Washington Autism Center).

Karen Siff Exkorn described how ABA, several intense years of it, and some other therapies recovered her Autistic son, Jake. Jake was diagnosed at age 2. At age nine, his mom considered him ‘recovered’ or ‘cured.’ Exkorn admits the “recovery rate” is only 5 to 10%. It’s her hope that with research that rate will increase. It was her goal to offer hope – but not false hope.

Exhorn also sits on the board of the New York Center for Autism.

Fact: If your Autistic child is now ‘cured’ or ‘recovered’ they were either not born Autistic, or they’re not cured or recovered, and are still very much Autistic.

In September of 2005 the NYCA Charter School opened its doors. The school had a one-to-one teacher ratio for its ABA curriculum. ABA advocates state that ABA is optimal for most Autistic children. Autistic activists state that ABA is conversion therapy and abuse. Autistics state ABA is not optimal for any Autistic.

ABA advocates are funded in some manner or another for their ‘advocacy work.’ Autistic activists are not.

The article admits ABA can be grueling, but “it’s effective at drawing autistic children out of their isolation.” Hmm, that doesn’t compute. According to this article’s ABA statistics, only 5 – 10% of Autistic students would find benefit. The circular talk in this article is dizzying. Also, the chances of an Autistic developing PTSD or other lifelong trauma-related condition from ABA is far, far more likely than a ‘recovery.’ ABA was not covered by most insurance companies in 2006. Parents had to pay the expense themselves, and the cost was about $62,000 a year.

This is where the Combating Autism Act and other state-by-state legislation became critical. When legislation was passed in every state, insurance companies were mandated to cover the costs of assessment – and ABA therapy.

Laura Slatkin and Ilene Lainer state the NYCA Charter School is truly a labor of love.

These folks aren’t the only ones in a ‘crusade’ for top-quality ABA curriculum schools for Autistics. The Child Development Center of the Hamptons (CDCH) was founded in 1996 by a parent of an Autistic, Dawn Zimmerman Hummel. At the time the school was raising funds for a preschool facility.

Also seeking to raise funds, the Eden Institute (founded in 1975) and the Alpine Learning Group (founded in 1988) would launch capital campaigns to develop new programs.

Everyone’s agreed, the article states, that no matter how much is done, services are desperately needed. When Autistics ‘age out’ of school at 21, the state no longer pays for educational services, aides, transportation, or intensive ABA. Families must apply to the state for a disability fund, which even if granted, is not a sustainable amount.

“One thing that no one has taken into account is the vast socioeconomic impact of autism. Looking ahead, just as society is hit with the Alzheimer’s crisis, there will also be 1.5 million people with autism who are no longer part of the school system. The burden will fall on the state and federal government. It’s huge.

Autism costs society close to $90 billion a year in education and services, and it will just get worse. Right now a lot of it is borne quietly by the families, but that can’t go on forever

– Jon Shestack, founder of Cure Autism Now

The article goes on to state: Autism’s financial toll is truly catastrophic. Therapies for a child with autism can run more than $70k a year. Parents take out second and third mortgages to pay for therapies and their marriages buckle under the strain.

It states that the divorce rate for parents of Autistics is speculated to be up to 80%. This speculation is fabrication, and an autism myth that still echoes today. The section ends with this cheery message: Whatever else autism means to parents, it usually means the end of their dreams for a normal life.

Well, with tragedy like that, who doesn’t want to fight those epidemic Autistic kids and prevent them from ruining their parents’ lives? Heck, the autism even caused parents to divorce, and it was going to definitely bankrupt us all. Autism touched everyone. The only hope for these creatures to normalize and be mainstreamed by elementary school was ABA.

While these spokespeople shared how expensive it was to care for an Autistic child using the therapies they promoted (ABA), they failed to mention the expected profits they would realize from their schools, companies and other entities taking advantage of the exploding ABA market that they created. These parents fail to state that with the passage of the Combating Autism Act of 2006, and then later state-by-state legislation, billions of dollars would be available to fund their schools, ABA services and companies, and more. Billions of dollars.


Deconstruction of Autism Speaks – The Autism Treatment Market Report

The U.S. Autism Treatment Market report on MarketResearch.com states:

The incidence of autism among American children has soared from 1 in 150 in 2000 to 1 in 54 today, and 3.5 million children and adults now live with autism. Yet, few therapies exist to treat this disease—just a few medications and ABA (applied behavioral analysis) programs. 

This is a fragmented $2.1 billion market comprised of for-profit and non-profit providers that serve autistic patients via brick & mortar centers and in-home therapy provided by therapists. Waiting lists are growing and 64% of patients are estimated to have access to insurance coverage.

On December 16, 2020 MarketResearch.com published an article by John Larissa with the headline:

$2 BILLION U.S. AUTISM TREATMENT MARKET IS POISED FOR GROWTH NEXT YEAR

There are 3.5 million children and adults with autism in America. The North American market for autism disorder treatment is expected to grow over the next five years, due to a variety of factors: more widespread awareness of the condition, efforts by advocacy groups, an increase in the number of ABA (Applied Behavior Analysis) treatment programs and centers, more insurance coverage, and new and more effective drugs for the treatment of patients. 

This is a fragmented industry that operates locally, a mixture of for-profit and non-profit organizations.   

The largest players in the field? Autism Speaks, UPMC, Centria Autism Services, The Center for Autism & Related Disorders, the May Institute, Butterfly Effects, Autism Learning Partners, Autism Spectrum Therapies, Chance Light Behavioral Health, and City Pro Group.

The top seven things to know about this sector: 

  • Market value & growth: This is a market valued at $2.0 billion in 2020 that is forecast to grow 4.0% per year to $2.45 billion by 2025. The pandemic did result in a shift to more telehealth services. Treatment programs generate $1.4 billion, while the medications market is worth $627 million.
  • Key forecasts: Treatment center revenues are expected to grow 4.5% per year from 2021 to 2025, outpacing the growth of the autism drugs market, which is forecast to grow 3.0% per year (average annual rate).
  • The need for treatment: The number of autistic children is rising in the United States, at the rate of 6.2% per year. The CDC now estimates that 1 in 54 children born in the U.S. are autistic.
  • More treatment centers: The overwhelming majority of the largest for-profit treatment companies has increased the number of centers they operate, and their revenues, compared to 2017.
  • The autism drugs market: Several medications (Risperdal, Concerta) are still used to treat people with autism, and less costly generics have entered the market, resulting in lower total revenues. There is substantial R&D taking place to develop new and more effective drugs.
  • Health insurance coverage for autism: Insurance coverage of autistic children has improved over the past four years, with 64% now covered (vs. 36% in 2016). All 50 states now cover it.
  • Revenue estimates: The top 9 for-profit chains are estimated to have posted 2019 revenues of $547 million.

On March 5, 2018 MarketResearch.com published an article by John Larissa with the headline: Autism Treatment Programs Are Growing: A $1.8 Billion Market in the U.S.

The U.S. autism treatment market was estimated to be valued at $1.85 billion as of 2016, growing to $1.87 billion last year. Marketdata forecasts 3.9% average yearly growth, to $2.23 billion by 2022. This could be conservative, as insurance coverage is improving. In addition, venture capital firms are starting to take notice of investment opportunities in this market.

The “average” ABA center grosses about $821,000, and many are non-profit organizations. Many programs now have waiting lists and there is a shortage of qualified supervisors.

Nine large multi-site ABA program providers operate an estimated 296 brick & mortar centers and employ thousands of therapists. Together, they account for about $390 million in revenues — a 38% market share of ABA programs.

Revenues of ABA (applied behavioral analysis) programs are estimated to generate $1.07 billion in revenues this year, outpacing sales of prescription drugs used for autism symptoms.


Song: “Eve of Destruction” via Bill Reiland

 


Deconstruction of Autism Speaks: The Autism Care Network (formerly the Autism Treatment Network (ATN))

On May 3, 2021 DisabilityScoop.com published an article by Michelle Diament with the headline: New National Care Network To Focus On Autism

A first-of-its-kind network of autism centers across the country is aiming to better address the needs of those with the developmental disability by putting the latest research into practice faster.

The newly launched 20-site Autism Care Network is a “learning health network,” according to Autism Speaks, which is behind the new collaboration.

In addition to treating people with autism in a traditional way, sites will work together to collect data from patients, test treatments and then share best practices among themselves and with other community providers.

At each center, we work directly with children with autism and their families to find out what they need, and through collaboration with providers and researchers across the network, use patient data to learn which treatments work and who they work for,” said Donna Murray, vice president of clinical programs at Autism Speaks. “That information gets back to providers through the network, and centers practice these methods and push that information into their communities to get the right care to the right patient at the right time.”

The Autism Care Network is the latest iteration of what was previously known as the Autism Treatment Network. The new version, however, includes almost twice as many sites and has evolved from being primarily a clinical network to a situation where patient insights drive research that’s then implemented, Autism Speaks said.

“Traditional research takes up to 17 years to be put into practice in a provider’s office,” said Karen Kuhlthau, a professor of pediatrics at Massachusetts General Hospital and director of the Autism Care Network’s research coordinating center. “With patient and family needs driving where we focus our efforts, and a system that lets us answer these questions quickly, the Autism Care Network will accelerate the process of moving best practices identified by research into the clinical setting to deliver more personalized and effective care.”

In addition to Autism Speaks, the Autism Care Network is being funded by the federal Health Resources Services Administration’s Autism Intervention Research Network on Physical Health, the J. Donald and Laurelle Lee Family Foundation and the National Patient-Centered Clinical Research Network.

wake. bake. caffeinate. with Eve Reiland

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