IACC Meeting Went as One Would Expect

 In The Politics of Autism, I discuss the Interagency Autism Coordinating Committee and research priorities.

RFK Jr. has stacked it with his own type of people.

Daisy Yuhas at The Transmitter:

Scientists have expressed concerns about last week’s meeting of the newest Interagency Autism Coordinating Committee (IACC), raising questions about the meeting’s content, process and impact on future U.S. federal funding for autism research.

“The day was slightly unhinged,” says David Mandell, professor of psychiatry at the University of Pennsylvania Perelman School of Medicine and former IACC member, who attended the public meeting virtually.

U.S. federal law mandates that the IACC—which coordinates the Department of Health and Human Services’ efforts on autism—convene at least twice annually to develop a strategic plan for autism research. But the latest IACC gathering on 28 April did not deliver on that goal, according to Mandell and other former committee members who listened to the meeting.

Instead, the committee pushed forward three policy proposals in a way that may have violated federal law, according to Mandell and statements by the Autism Science Foundation and the Autistic Self Advocacy Network.

The main topics in these proposals—profound autism, challenging medical comorbidities and the dangers of wandering and elopement—are worthy of discussion and policy change, Mandell says. “I can make common cause with some of the concerns and ideas that were expressed.”

But completely absent from the agenda was any development of a strategic plan “for conduct of, and support for, autism spectrum disorder research” as stipulated by the Autism CARES Act, former IACC member Alycia Halladay, chief science officer of the Autism Science Foundation, told The Transmitter.

Shadow IACC

In The Politics of Autism, I discuss the Interagency Autism Coordinating Committee and research priorities.

RFK Jr. has stacked it with his own type of people.

Lena H. Sun at WP:

A group of prominent scientists launched an independent autism advisory panel Tuesday over fears that Health Secretary Robert F. Kennedy Jr. has politicized the key federal autism advisory board he oversees.

The shadow committee will focus on developing a coordinated scientific agenda for autism research and will function as a counterweight to the advisory board Kennedy reshaped in January by appointing new members. Many of those members have echoed his controversial views, including promoting debunked claims linking vaccines to autism and advocating for unproven treatments.

The new independent group will do more than speak out against misinformation, Alison Singer, president of the Autism Science Foundation and member of the group, said in a statement Tuesday. The group will create a research agenda that reflects the progress and promise of autism science and report annually on key research advances, including basic research on genes and cells, environmental causes, early detection, therapeutics and services.

The new panel, to be called the Independent Autism Coordinating Committee, includes experienced scientists and advocates who have funded and conducted autism research for many decades, including two past directors of the National Institute of Mental Health, Joshua Gordon and Tom Insel. It is set to hold its first meeting on March 19, the same day as the federal panel.

Autism and Health Organizations Denounce the Lies on the CDC Website

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.  A top antivaxxer is HHS Secretary RFK Jr. He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He has now hijacked the CDC website.

Autistic Self Advocacy Network:

Yesterday, the Centers for Disease Control radically rewrote a website addressing false claims linking vaccines to autism. Previously, the CDC had correctly stated that a strong scientific consensus has concluded that vaccines are not associated with autism. The website now falsely claims that this statement is “not evidence-based” and that “studies supporting a link between vaccines and autism have been ignored by health authorities”. These are lies.

A statement from the American Public Health Association and other groups, including the Autism Society:

Our organizations, representing autistic individuals, their families, medical professionals and public health workers, are alarmed that the Centers for Disease Control and Prevention is promoting the outdated, disproven idea that vaccines cause autism.

Medical researchers across the globe have spent more than 25 years thoroughly studying this claim. All have come to the same conclusion: Vaccines are not linked to autism.

This false rumor distracts from pressing, urgent issues in children’s health. Amplifying this claim and encouraging unnecessary investigations only worsens parents’ fears; it will not lead to better therapies, improved support for caregiving families, or changes in health care, education, and society in ways that would help children with autism thrive. Rather than devoting needed resources right now to support people with autism and their families in every community, our taxpayer-funded health agencies are using public resources to spread harmful rumors. Autistic people are valued members of society and, like all of us, deserve research that helps health care and other systems address genuine needs. 

Today, our organizations reject this latest attempt to create fear around routine childhood immunizations. Vaccines rank among our greatest medical success stories. Thanks to vaccines, serious diseases that once made thousands sick every year and caused life-long health issues have become rare. We cannot risk losing this progress. Together, we call on the CDC to return to its long history of promoting evidence-based information in the service of protecting the health and well-being of all Americans

 Autism Speaks:

As an organization long invested in rigorous autism research and in supporting autistic people and their families, we believe this change undermines decades of clear scientific consensus. More than 20 years of high-quality research involving millions of children has demonstrated no causal link between vaccines and autism. The few studies that have implied otherwise are extremely limited, methodologically flawed, and have not been reproducible.

Two of the changes are especially concerning:

• It dismisses robust, established evidence. The updated CDC page elevates weak, outdated studies, such as a 20-year-old parent survey of 77 respondents. These highlighted studies do not meaningfully challenge the overwhelming body of research on autism.
• It relies on long-discredited correlations.
The page repeats the claim that autism prevalence “correlates” with the rise in childhood vaccines. This does not mean causation, and this argument has been repeatedly debunked.

Autism Science Foundation:

We are appalled to find that the content on the CDC webpage “Autism and Vaccines” has been changed and distorted, and is now filled with anti-vaccine rhetoric and outright lies about vaccines and autism. The CDC’s previous science and evidence-based website has been replaced with misinformation and now actually contradicts the best available science. The new statement on the site that says ““vaccines do not cause autism” is not an evidence-based claim” shows a lack of understanding of the term “evidence”.

Profound Autism 2025

 In The Politics of Autism, I write:

The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a  disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”

Azeen Ghorayshi at NYT:

[Allison] Singer, who is the head of the Autism Science Foundation, a nonprofit that funds autism research, is one of a group of parents and clinicians who are calling for the autism spectrum diagnosis to effectively be split in two, saying it has become so broad that it is obscuring the experiences of the seriously disabled people it was first meant to describe, like her daughter.

At major autism conferences and in scientific journals, the group has proposed the creation of a separate category, called profound autism, for people with the most severe disabilities.

An estimated one in 31 8-year-olds in the United States has an autism diagnosis, according to the most recent data, up from one in 150 8-year-olds in 2000. While the most severe autism cases account for a small part of that increase, most of the surge reflects a rise in the number of higher-functioning people getting diagnosed.

Parents of children with severe autism say the wider diagnosis has come at a steep cost: Research that includes people with the most significant impairments has declined year over year, even as overall funding for autism research has grown substantially.

And a survey of 800 families, conducted this year by the National Council on Severe Autism, found that 80 percent had been told their children were too disruptive even for classrooms and services tailored to students with autism and other disabilities.

“Autism has become so diluted, we can’t really tell what we’re talking about anymore,” Jill Escher, the founder of the national council who has two adult children with profound autism, said.

 

Prevalence of children with autism

While both profound and non-profound autism among 8-year-old children increased from 2000 to 2016, the increase was greater for non-profound autism.

Note: Data based on a study of the prevalence of profound and non-profound autism among 8-year-old children at 15 sites in the United States in the Autism and Developmental Disabilities Monitoring Network, in even-numbered years from 2000 to 2016.

Source: Centers for Disease Control and Prevention

By Yuhan Liu

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The ABA Debate Continues

 In The Politics of Autism, I write:

As long as government funds so much research, politics will shape the questions that scientists ask and determine the kinds of research that receive funding.  Politics will even influence which scientists the policymakers will believe and which findings will guide public policy. In the end, science cannot tell us what kinds of outcomes we should want.  ABA “works” in the sense that it helps some autistic people become more like their typically developing peers.  Most parents regard such an outcome as desirable, but not all people on the spectrum agree.  

 Jessica Winter at The New Yorker:

In recent years, A.B.A. has come under increasingly vehement criticism from members of the neurodiversity movement, who believe that it cruelly pathologizes autistic behavior. They say that its rewards for compliance are dehumanizing; some compare A.B.A. to conversion therapy. Social-media posts condemning the practice often carry the hashtag #ABAIsAbuse. The message that A.B.A. sends is that “your instinctual way of being is incorrect,” Zoe Gross, the director of advocacy at the nonprofit Autistic Self Advocacy Network, told me. “The goals of A.B.A. therapy—from its inception, but still through today—tend to focus on teaching autistic people to behave like non-autistic people.” But others say this criticism obscures the good work that A.B.A. can do. Alicia Allgood, a board-certified behavior analyst who co-runs an A.B.A. agency in New York City, and who is herself autistic, told me, “The autistic community is up in arms. There is a very vocal part of the autistic population that is saying that A.B.A. is harmful or aversive or has potentially caused trauma.”

Until recently, the American Medical Association officially endorsed “evidence-based treatment of Autism Spectrum Disorder including, but not limited to, Applied Behavior Analysis Therapy.” Last summer, the medical students’ body of the association proposed that the organization withdraw its support for A.B.A., citing objections by autistic self-advocates. The association did not adopt the resolution as submitted, but its house of delegates eventually approved an amendment removing any explicit reference to A.B.A., and autistic activists spread the word that A.B.A. no longer appeared to have the outright endorsement of the nation’s largest medical society.

...

In recent years, private equity has taken a voracious interest in A.B.A. services, partly because they are perceived as inexpensive. Private-equity firms have consolidated many small clinics into larger chains, where providers are often saddled with unrealistic billing quotas and cut-and-paste treatment plans. Last year, the Center for Economic and Policy Research published a startling report on the subject, which included an account of how Blackstone effectively bankrupted a successful A.B.A. provider and shut down more than a hundred of its treatment sites. Private-equity-owned A.B.A. chains have been accused of fraudulent billing and wage theft; message boards for A.B.A. providers overflow with horror stories about low pay, churn, and burnout. High rates of turnover are acutely damaging to a specialty that relies on familiarity between provider and client. “The idea that we could just franchise A.B.A. providers and anyone could do the work—that was misinformed,” [Alison] Singer, of the Autism Science Foundation, said.

ASF Lobbyist Argues for "Profound Autism" Designation

 In The Politics of Autism, I write:

The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a  disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”

Craig Snyder, former chief of staff to Sen. Arlen Specter and lobbyist for the Children’s Health Act of 2000 and the Combating Autism Act of 2006, at The Hill: 

By 2014, the Combatting Autism Act couldn’t be reauthorized without changing its name to the Autism CARES Act, a piece of Orwellian language that marked a radical shift in the policy the law was intended to codify.

Kids who can’t speak, many with severe intellectual disability and serious physical health problems, and their families, are aggregated in popular culture with celebrities who sometimes self-diagnose as autistic —even as they suffer undiagnosed physical pain (for example, from GI disease) or seizures, often “treated” with completely inappropriate anti-psychotic medications and leather restraints, confronted by and harmed by police without training in their special needs, or as they wander into harm’s way or accidental deaths.

If someone had told me that in 2023 sufficient resources would not have been mustered to determine the basic biology of profound autism and to turn understanding of causation into medical treatments, and that those awaiting breakthroughs would have such a pathetic infrastructure of services, I simply would not have believed it. That is why I’ve rejoined this cause as lobbyist for the Autism Science Foundation.

...

The Autism Act is again coming up for reauthorization, allowing accountability for taxpayer dollars and learning from experience about policies’ effectiveness.

The millions who love someone afflicted with profound autism will advocate for people who cannot speak for themselves, insisting that the Congress and President Biden make the crucial distinction between profound autism and the neurodiversity represented by ASD self-advocates, and, with respect to profound autism, recommit to combatting it and seeking its ultimate cure.

ASF Website

In The Politics of Autism, I discuss the many organizations engaged in advocacy and education.

From the Autism Science Foundation:

The Autism Science Foundation (ASF), a nonprofit organization dedicated to supporting families facing autism and to funding innovative autism research, has announced the debut of its comprehensive new website.

The modern new site is intended to serve as a trusted resource for families, individuals with autism, autism advocates, scientists, service providers, donors, members of the media and the general public.

Highlights of the new site include:

Evidence-based information about autism—what it is, early signs, what does (and does not) cause it and more.

• A roadmap for every phase of the autism journey, from steps to take after a diagnosis to how to support people with autism through adulthood.
• Information about grant opportunities for researchers—and how ASF-supported research has made a tangible impact.
• A research directory that highlights important research studies, as well as links to our weekly science podcast.
• Details about ASF-sponsored events, including the 9th annual Day of Learning on March 30, as well as ways to participate in research.
• Enhanced ADA accessibility and the ability to translate the site into 10 languages.

“I am incredibly proud of our new website, which meaningfully furthers our mission to provide critical support to autism families and researchers,” said ASF Co-Founder and President Alison Singer. “Receiving an autism diagnosis for your child can feel overwhelming and scary, but the information on our new site equips parents with the evidence-based information they need to help their loved one thrive. The new site also continues to offer researchers the support they need to advance our understanding of autism and develop new treatments. We are so grateful to our generous donors for making this project possible.”

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.

IACC Public Members

In The Politics of Autism, I discuss the Inter-Agency Autism Coordinating Committee and research priorities.

From IACC:

The U.S. Department of Health and Human Services (HHS) today announced the appointments of new and returning members to the Interagency Autism Coordinating Committee (IACC), a federal advisory committee reauthorized under the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019. The IACC is a federal advisory committee composed of public stakeholders and federal officials that coordinates federal activities concerning autism spectrum disorder and provides advice to the HHS Secretary on issues related to autism. Committee meetings serve as a public forum for the sharing of community perspectives and concerns about autism. The committee uses this input as it formulates advice and recommendations for the HHS Secretary on matters related to autism research, services, and policy. The committee's responsibilities include developing and annually updating the IACC Strategic Plan for Autism Spectrum Disorder (ASD) and preparing an annual Summary of Advances in ASD Research.

After an open call to the public for nominations of individuals to serve on the committee, Secretary of Health and Human Services, Xavier Becerra, J.D., appointed 20 new and two returning public members to the IACC to provide him with advice to advance research, enhance services, and increase opportunities for people on the autism spectrum. The committee also includes 23 new and returning federal officials representing key federal agencies and departments that serve the autism community across a wide variety of areas, including biomedical research, healthcare, education, and social services. Joshua Gordon, M.D., Ph.D., director of the National Institute of Mental Health, will continue to serve as the chair of the committee. The first meeting of the new committee will take place virtually on July 21-22, 2021 and will be open to the public via webcast. A full roster and biosketches of all the new and returning members can be viewed on the IACC website.

IACC Executive Secretary, Susan Daniels, Ph.D., stated, "We are excited to welcome the largest and most diverse IACC to date, with a wider representation of perspectives from across the autism community than ever before."

Public members appointed include autism self-advocates, parents and family members of children and adults on the autism spectrum, clinicians, researchers, and leaders of autism research, services, and advocacy organizations. Many of the appointed individuals serve multiple roles, such as parent and researcher or self-advocate and leader of an advocacy organization. Appointees hail from across the U.S., including states that have not been represented on the committee previously, such as Louisiana, Maine, Texas, Washington, Vermont, and Wisconsin.

Autism and disability organizations represented by new and returning appointees to the IACC include the Autism Science Foundation, Autistic Self Advocacy Network, Autism Speaks, Champions Foundation, Simons Foundation, and Madison House Autism Foundation. Four federal departments newly joining the IACC —the U.S. Department of Housing and Urban Development, U.S. Department of Justice, U.S. Department of Labor, and U.S. Department of Veteran Affairs—will provide additional expertise in the critical areas of housing, employment, interactions with law enforcement, and care for veterans on the autism spectrum.

Public members appointed by the Secretary to serve on the IACC from 2021-2024 are:

• Maria Mercedes Avila, Ph.D., M.S.W., M.Ed.Associate ProfessorDepartment of PediatricsLarner College of MedicineUniversity of VermontBurlington, Vermont
• Alice Carter, Ph.D.ProfessorDepartment of PsychologyUniversity of Massachusetts Boston
• Samantha Crane, J.D.Legal DirectorAutistic Self Advocacy NetworkWashington, D.C.
• Aisha Dickerson, Ph.D.Assistant ProfessorDepartment of EpidemiologyBloomberg School of Public HealthJohns Hopkins UniversityBaltimore, Maryland
• Dena Gassner, M.S.W.Ph.D. Candidate in Social WorkAdelphi UniversityWest Hempstead, New York
• Morénike Giwa Onaiwu, M.A.Humanities ScholarCenter for the Study of Women, Gender, and SexualityRice UniversityHouston, Texas
• Alycia Halladay, Ph.D.Chief Science OfficerAutism Science FoundationNew York, New York
• Craig Johnson, B.A.Founder and PresidentChampions FoundationHouston, Texas
• Yetta Myrick, B.A.Founder and PresidentDC Autism ParentsWashington, D.C.
• Lindsey Nebeker, B.A.Freelance Presenter/TrainerAlexandria, Virginia
• Valerie Paradiz, Ph.D.Vice PresidentServices and SupportsAutism SpeaksPrinceton, New Jersey
• Jenny Mai Phan, Ph.D.Post-Doctoral FellowWaisman CenterUniversity of Wisconsin-Madison
• Joseph Piven, M.D.Thomas E. Castelloe Distinguished Professor of Psychiatry and PediatricsUniversity of North Carolina-Chapel Hill
• JaLynn R. Prince, B.F.A.Co-Founder, President, and ChairMadison House Autism FoundationRockville, Maryland
• Susan Rivera, Ph.D.Professor and ChairDepartment of PsychologyUniversity of California, Davis
• Matthew Siegel, M.D.Vice President of Medical AffairsDevelopmental Disorders Service LineMaine Behavioral HealthcareWestbrook, Maine
• Ivanova Smith, B.A.Self-Advocate FacultyLeadership Education in Neurodevelopmental and Related DisabilitiesUniversity of WashingtonTacoma, Washington
• Hari SrinivasanStudentUniversity of California, Berkeley
• Helen Tager-Flusberg, Ph.D.ProfessorDepartment of Psychological and Brain SciencesBoston UniversityBoston, Massachusetts
• Julie Lounds Taylor, Ph.D.Associate ProfessorDepartment of PediatricsVanderbilt University Medical CenterNashville, Tennessee
• Paul Wang, M.D.Deputy DirectorClinical Research Associates, LLCSimons FoundationNew York, New York
• Stephen Whitlow, J.D.Executive DirectorTransition ServicesMerakeyBaton Rouge, Louisiana

The autistic members of @IACC_Autism are: @lauralovesian1, @MorenikeGO, @LindseyNebeker, @HariSri108, @Samanticka, Dena Gassner, and Valerie Paradiz. That’s also a pretty broad ideological spread, with a lot of different expertise coming to the table.

— Sara Luterman (@slooterman) July 7, 2021

Screening

In The Politics of Autism, I discuss screening and diagnosis.

Lisa Rapaport reports at Reuters:

While there’s little evidence screening or treatment harms children, follow-up tests and interventions may place unnecessary burden on some families in terms of costs and time, according to the USPSTF recommendations published today in the Journal of the American Medical Association.

But the recommendations, which are often used by government and private insurance providers to make coverage decisions, could eliminate funding for pediatricians to screen toddlers and preschoolers, Dr. Jeremy Veenstra-VanderWeele of Columbia University argued in an editorial in JAMA Psychiatry.

The American Academy of Pediatrics recommends screening all children for autism at 18 and 24 months, he wrote.

“This is what pediatricians are supposed to be doing, and should continue to do,” he added by email.

Screening kids even when parents and doctors don’t see symptoms may be of benefit to children who might otherwise fall through the cracks, Geraldine Dawson of Duke University argued in an editorial in JAMA Pediatrics.

From Autism Speaks:

Autism starts very early in brain development, and its symptoms can be detected by age 2. We have a broad consensus, based on research, that early intervention for autism results in better outcomes.Yet to our great disappointment – and against expert counsel – the US Preventive Services Task Force has refused to recommend universal autism screening. Unfortunately, the USPSTF statement risks misleading families – and health insurers – on the value of autism screening for all children.

Autism Speaks – together with the Autism Science Foundation – continues to wholly endorse the Bright Futures guidelines of the American Academy of Pediatrics, which call for continuous developmental surveillance and for specific autism screening at 18 months, 24 months and whenever a parent or provider expresses concern.

Antivax Groups Fund a Study that Undercuts Their Beliefs

In The Politics of Autism, I discuss the many, many studies that have debunked the notion of a link between autism and vaccines.

At Forbes, Emily Willingham writes of a recent animal study that further debunked the vaccine theory (as well as an earlier "hot mess" of a study).

Before people cry “Pharma Shill” on this, it’s also worth noting the funders of this study:

We thank the following for their generous financial support: The Ted Lindsay Foundation, SafeMinds, National Autism Association, and the Johnson and Vernick families.

SafeMinds, an organization dedicated to demonstrating a mercury- or vaccine-related causation of autism, probably didn’t have this outcome in mind when they funded this study. They are very invested in mercury/vaccine-autism causation. This summary of research they’ve funded through 2013 includes 55 references to mercury.

Laura Hewitson, author on the Hot Mess Monkey Study, is also an author on this PNAS paper. She is the research director at the Johnson Center for Child and Health Development, which is a revamp of Thoughtful House, former home to Andrew Wakefield. With these parties involved, it ought to be tough for those committed to the idea that the original Hot Mess Monkey Study was gospel to find a way to ignore this one.

Newsweek reports that the study found some changes in the brains of monkeys receiving vaccines.

SafeMinds argues that these changes all suggest a correlation between vaccination and autism. But as Alycia Halladay, chief science officer at the Autism Science Foundation, points out, these findings do not necessarily indicate anything about autism. “There are likely many biological effects that occur in an organism after a vaccine administration, but that doesn’t always mean it will cause autism,” she says.

...
Halladay commends SafeMinds for financially supporting the study, but she worries that some autism advocates may be asking the wrong questions. “I'm not saying that we need to stop funding research in the environment, because we know the environment does impact neurodevelopment,” she says. Halladay likens the challenge of disputing the claim that vaccines cause autism to “playing whack-a-mole.”

“First, the proposed association was between the MMR vaccines and autism,” she says. “Then that was disproven. Then it was the thimerosal components in vaccines; now that has been further disproven in a carefully designed animal model study that aimed to specifically examine that question. It has also been suggested that the association is because of vaccine timing, but that too has been disproven. The target always seems to be moving, and the expectation is that scientific resources will be diverted to address each new modification of this hypothesized link.”

Reaction to the Screening Recommendation

In The Politics of Autism, I discuss early screening. Rita Price reports at The Columbus Dispatch:

A draft recommendation from a federal task force says there’s not enough evidence to support universal checks — a position contrary to guidelines from other health associations and advocacy groups that urge early screening for all.

The difference in views comes amid a sharp rise in autism diagnoses. According to the most recent federal estimates, the disorder affects about 1 in 68 of the nation’s children.

“Early screening and early identification lead to early intervention,” said Shawn Henry, executive director of the Ohio Center for Autism and Low Incidence. “And we know that works.”

Henry and others say the recommendation, released this week and open for public comment until 8 p.m. on Aug. 31, is likely to draw strong reaction. The panel responsible for it, the U.S. Preventive Services Task Force, is influential.

The American Academy of Pediatrics is sticking by its standards, which recommend screening for all children at ages 18 and 24 months. The academy’s president, Dr. Sandra Hassink, said early identification and referrals “are critical to ensuring that children with autism have access to effective therapies.”

Autism Speaks and the Autism Science Foundation, in a joint statement, called the draft proposal troubling and said it could be misinterpreted.

Though the task force does not explicitly discourage screening for autism, its proposal “has failed to fully endorse screening,” the groups said.

Article on Autism Speaks

At The Daily Beast, Emily Shire writes about Autism Speaks:

Compared to other autism nonprofits, Autism Speaks spends a smaller percentage of its revenue on programming. A comparison of 2012 income tax forms found through the Urban Institute shows 70.9 percent of Autism Speaks’ revenue is devoted to program expenses, in comparison to 79.8 percent of the Autistics Self-Advocacy Network’s and 91.5 percent of the Autism Science Foundation’s. Autism Speaks declined to comment on its financial matters.

While Autism Speaks is much bigger and has a larger staff than both of those organizations, the difference in money spent on “current officers, directors, trustees, and other key employees” is striking. For these employees, Autism Speaks spent $2,252,334 in 2012, according to tax filings. In comparison, the Autistics Self-Advocacy Network spent just $65,000 on this class of employees. That was to cover the salary of its president, Ari Ne’eman. In comparison, the former president of Autism Speaks, Mark Roithmayr, had a salary of $436,314 in 2012 and Chief Science Officer Geri Dawson earned $465,671. Eleven other higher-up employees in Autism Speaks earned well into six figures that year. As the head of Autism Science Foundation, [Alison] Singer doesn’t take a salary.

Brains

From Autism Speaks:

Autism Speaks, the Simons Foundation and the Autism Science Foundation have launched “It Takes Brains,” the new donor registration site for Autism BrainNet.

Autism Speaks Chief Science Officer Rob Ring joined Autism BrainNet Director David Amaral and the Simons Foundation’s Marta Bennedetti in making the announcement at the annual Stakeholders Luncheon at the International Meeting for Autism Research (IMFAR), in Atlanta today.

A year ago, the Simons Foundation and Autism Speaks announced their collaboration in establishing Autism BrainNet to collect, store and distribute the precious brain tissue needed to advance scientific understanding and treatment of autism. The new foundation grew out of the Autism Speaks Autism Tissue Program.

As Autism BrainNet’s outreach program, the “It Takes Brains” website encourages families affected by the disorder to register as future donors.

“I would encourage any family to register to be donors,” says BrainNet family participant Valerie Hund, of Livermore, California. “Although we could not have anticipated losing our son to a seizure, for us, in that moment, we gave back and did something that felt right. So now Grayson can be a pioneer in helping make this next quantum leap in research. Out of something bad, something good came about.”

A severe shortage of human brain tissue has hindered the pace of autism research. At the same time, these precious donations have led to recent breakthroughs.

For instance, research has revealed structural differences between brain tissue from individuals affected by autism and typically developed brains. Other studies have highlighted differences in the numbers and sizes of brain nerve cells, or neurons. Still other research has picked up signs of increased inflammation in brain tissue from individuals affected by autism. In addition, studies have uncovered differences in how genes are expressed inside their brain cells.

However, researchers have not been able to adequately confirm these findings – in part due to the long-standing shortage of donations.