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Autism Survey Reveals Shortcomings in Federal Response to Autism Crisis

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Congressional Hearings Needed Before Reauthorization of Autism CARES Act

Baltimore, MD., November 28, 2018 – The Federal advisory committee charged with coordinating all U.S. Government efforts on autism is failing to meet the needs of individuals and families affected by the disorder, according to a survey released today by several autism advocacy groups. The survey, primarily of parents and caregivers of individuals with autism, found that the Interagency Autism Coordinating Committee, or IACC, has failed to make a difference in the lives of people with autism. The autism advocacy groups are asking Congress to replace the IACC with a more effective Office of National Autism Policy Coordination when it considers reauthorizing the Autism CARES Act next year.

The 2018 Interagency Autism Coordinating Committee (IACC) Stakeholder Satisfaction Survey collected responses from 1,405 autism community members through an online questionnaire. The Reform Autism CARES Coalition (RACC) released the findings to inform Congress of the deficiencies in the Federal response to the autism crisis. The RACC is comprised of national autism advocacy groups Autism Action Network, SafeMinds, and the Thinking Mom’s Revolution (TMR).

According to its website, the IACC “is a Federal advisory committee that coordinates Federal efforts and provides advice to the Secretary of Health and Human Services on issues related to autism spectrum disorder (ASD).” The IACC was originally established under the Children’s Health Act of 2000. The current Committee was reauthorized through the Autism CARES Act of 2014. Operating the IACC costs American taxpayers $1.38 million per year.

Since the Committee’s creation in 2000, the number of American children with autism has increased 120 percent, from 1 in 150 in 2000, to 1 in 59 in 2014, according to the U.S. Centers for Disease Control and Prevention. The age of diagnosis has barely budged, and no new treatments have been identified. Autism is on track to cost up to $1 trillion by 2025 in medical, nonmedical and productivity losses, according to a University of California, Davis study.

SafeMinds Board President Sallie Bernard, a RACC member, stated, “the IACC has failed to produce a response to the current autism crisis commensurate with its scope and depth. Accordingly, our country now has many more Americans with autism, and less resources with which to address their needs. The autism crisis demands a more inclusive, proactive, and accountable response from the Federal government than the IACC has delivered.”

Survey respondents commented on the following shortcomings:

  • Almost half of the survey respondents were unaware that the IACC existed before completing the survey.
  • When asked if the IACC’s work was improving the lives of people with autism and their families, over 56 percent of respondents stated “no” and approximately 38 percent said that they did not know.
  • When asked if the IACC members represented their interests when it comes to addressing autism in the United States, nearly 60 percent of the 1,402 respondents answered “no.” While 33.38 percent of respondents said “I don’t know,” only seven percent stated “yes.”
  • Approximately 94 percent of 1,392 respondents have not taken the opportunity to provide public comment at an IACC meeting. Commonly-noted reasons for not providing feedback were a lack of ability to travel to Washington, DC given the responsibilities of caring for a person with autism, difficulty in finding appropriate child care, and the cost of traveling to Washington, DC from other locations; and a lack of belief that the IACC members will take their comments seriously based on what they have seen while watching the IACC meetings’ online live streams.

John Gilmore, executive director of the Autism Action Network stated, “The IACC is leading America’s charge to address autism. Yet, it has consistently demonstrated not only a lack of urgency, but also disenfranchisement of autism community stakeholders. Though it was reauthorized in August 2014, the IACC did not meet for over a year until November 2015. This is devastating when there are so many individuals and families suffering with autism and its many commonly co-occurring medical conditions.”

The RACC is recommending the IACC be replaced with a small Office of National Autism Policy Coordination, led by a full-time Federal autism policy coordinator. Placed in the agency-neutral Executive Office of the President, the Office would be responsible for producing a National Autism Strategy, with measurable goals, objectives, and outcomes. The Office will report annually to Congress on its progress in addressing the autism crisis, as defined in the Strategy document. The Strategy will focus its policy and research on prevention, treatments, and services for people with autism and their caregivers.

Kim Spencer, vice president of TMR, stated, “Since many families cannot travel to Washington, D.C. to share their experiences raising their children with autism, the use of interactive technology should be facilitated so all families facing autism have a chance to provide input on Federal autism policy. Finally, since the American taxpayers deserve more accountability, we are advocating for monitoring the effectiveness of federally-funded autism programs to ensure the best return on investment.”

The RACC is requesting congressional hearings on the Federal Government’s current autism response in early 2019. Hearings would aid Congress in understanding the urgent crisis of autism and the need to make changes to the Autism CARES Act prior to considering its reauthorization. More information on the RACC’s recommendations, and the full 2018 IACC Stakeholder Satisfaction Survey Report can be found online at safeminds.org/reform-autism-cares.


ABOUT AUTISM ACTION NETWORK: Autism Action Network’s mission is to be a strong and unified voice for people with neurodevelopmental and communication disorders so that each person will be provided with the support necessary to live a full and productive life. For more information, please visit autismactionnetwork.org

ABOUT SAFEMINDS: SafeMinds is a national 501 (c)3 nonprofit organization formed in 2000. Its mission is to end the autism crisis by promoting environmental research and advocating for effective treatments.

ABOUT TMR: Thinking Moms’ Revolution is a national 501(c)3 organization that provides real help to families struggling with medical, emotional, educational and financial hardship due to complex medical needs faced by their children diagnosed with autism and other developmental disabilities. Help comes via funds to defray costs for practitioner appointments, recommended treatments, travel-related expenses to meet with experts in their fields, materials to start homeschool or purchase an AAC device that helps facilitate communication, expenses related to autism conferences and legal expenses as applicable. For more information, please visit thinkingmomsrevolution.com and teamtmr.org.



There is a lot of talk here on AoA about medicine. Has anyone heard of a clinical trial for people with autism at UC San Diego? The trial is for a century old anti parasitical drug called Suramin and it is showing success. Makes you wonder the cause of some “autism” cases. Just google it for more info. Yes I agree the the IACC has done very little for autism but so has many supposed autism “advocacy” groups.

Michael S.

This is off-topic and I hate to hijack a thread, but this
is essential reading:

The Hidden History Of The Polio Vaccine And How It Impacts Today’s Acute Flaccid Myelitis: An Interview With Walter Kyle, Esq., Former Vaccine Court Claimants’ Attorney


Interviewee has done considerable research into vaccines and the damage they cause humans. Most interesting is his discovery that the majority of the vaccine research in the early to mid 20th Century was done under the guidance of the military for several reasons: 1. The military had large numbers of soldiers impacted oversees from polio and other infectious diseases. 2. The military seeks to vaccinate youngsters many years PRIOR to their enlistment because they are aware of the vaccine injuries and do not want to be financially responsible for vaccine injuries, hence the push for infant and toddler vaccinations to be the norm. 3. Many of the vaccines that are mandated are simply not necessary for domestic use, but would be beneficial for soldiers traveling to countries in Asia and Africa where infections diseases run rampant. Example: Prostitutes often carry hepatitis and soldiers oversees tend to use prostitutes regularly

Deep, interesting read. Highly recommended.

Beleaguered Autism Mom

The IACC is a false front for the government. The government health policy is controlled by the pharmaceutical industry. Families with brain damaged kids are a minority. In the 1980s, the nightly news did not deny the AIDS epidemic, suppress information and science - they chronicled it. Once the public realized a blood transfusion could give you HIV/AIDS the scientific community rallied. People were legitimately afraid of blood. (hence I tell everyone managing an autistic adult, teach them how to donate blood - eventually the Red Cross will have to explain why they can't sell brain damaging dopamine antibodies). The medical community has been brainwashed into believing deaths due to measles are being prevented and seeing 2% of kids becoming brain-damaged is just the price we have to pay as a society. There will be no discussion of this "fact". With the fertility rate declining and the life expectancy in the U.S. declining - will our elected officials wake up in time to save us? Because under the current regime, no one is safe.
Our biggest threat is the internet which is now controlled by the same powerful interests.

Barry Stern

The federal government has failed on all fronts to deal with the autism epidemic:

1. Emergency never declared. It has never acknowledged that autism is a public health emergency, despite its own data showing that 1 in 36 children have autism.

2. Misspent research funds. Despite spending hundreds of millions on research, the feds have not discovered the cause. Instead, it continues to misspend by seeking genetic causes and ignoring probable environmental ones like vaccines, pollution and excessive electromagnetic radiation. It is impossible that genetic change could cause in a single generation the huge jump in autism incidence from 1 in 10,000 to 1 in 36 . To protect our pharmaceutical, medical, chemical, food, insurance and media industries, and politicians who benefit from their campaign contributions, federal agencies like the CDC and FDA continue to engage in one of the most massive cover-ups in history, right there with the 40-year governmental cover-up of the dangers of smoking tobacco to our health.

3. Little financial help to families impoverished by autism. Despite expensive care parents must provide their children with autism well into adulthood, the federal government provides little financial relief beyond their one-size-fits-all tax breaks for families or payments to adults with disabilities – for example, no insurance coverage for out-of-network doctors and dentists who specialize in caring for individuals with autism yet do not accept any insurance, or for specialized laboratories that have sophisticated tests for medical conditions associated with autism, or for supplements and special diets that are essential for recovery or preventing further disease. Although insurance will cover expensive drugs and treatments when individuals are sick, these often do not work for individuals with autism and make many sicker. Better to invest in parents to keep their autistic children out of the hospital or institutions through well-researched preventive care.

4. Reversing the massive failure of special education for children with autism. In fact, the neglect and abuse these children often receive in school makes them worse. In addition to lack of qualified instructors and expert supervision, other contentious issues include misappropriating special ed funds, lack of program accountability, bullying of parents and inattention to bio-medical antecedents of autism by providing ample amounts of physical education, music, art, dance and suggestions for better nutrition and eating habits. Most of these kids are not healthy or fit.

The solution for these kids is to break up the school monopoly on special education that has led to major conflict of interest. Schools perform all three functions -- diagnosis, prescription (IEP), and filling the prescription. If there was ever a rationale for having school money follow students to the educational provider selected by parents, it would be for children with autism and related neurological disorders. Here’s my take on how to bring more competition, competence and caring into the system by having different institutions take responsibility for different functions


Hi all,
I agree that the IACC has been a completely useless waste of money. What I don't see is how changing the name, and creating an office that does not even have to have public meetings, is non elected and is centered in government bureaucracy is going to be in any way an improvement.
We already know who is going to be put in charge of this; neuro diverse advocates who argue against help for our kids, and bureaucrats whose job it is to try and deny the crisis.
We have already learned from the IACC that if activists push for a program, then people who will work against a helpful agenda are the ones who will be put in charge.
At least with the current IACC, there are public meetings, where people do get to tell some home truths to the members.
I don't know what the answer is, but to quote from Terry Pratchett, it may well be a case of "Meet the new boss, same as the old boss."

David Weiner

Gayle said "The cure is a medication known as an immune modulator and a doctor named Michael Goldberg could conduct clinical trials with these medications that would cure our children of this disease."

I can't say that I know anything about this approach, but I don't have much hope that the IACC, or any other such bureaucracy, is going to support this measure and fund it.

I believe that doctors should have the freedom to try promising medications (or other therapeutics), on an informed consent basis, without risking the loss of their medical licenses. And they should have the freedom to accurately disclose the results they are obtaining, even in the absence of formal clinical trials.

As I prepared to write this comment, I saw that Annie asked if there are any relevant lessons from the era of the AIDS crisis and I think that the answer is yes. We cannot wait for the government or medical establishment to address this problem. We have to take matters into our own hands.


With the death of HW Bush there’s much in the news lately about he and Reagan’s administrations lack luster response to the AIDS crisis. I wonder if there are any lessons to be learned from that era’s advocacy?

Aimee Doyle

Bob is right that the IACC is comprised of members who do not fully understand autism as a disease and autism science.

The IACC also has a number of committee members who are anti-cure and advocate neurodiversity - that belief that autism is a difference, not a disability. This makes it difficult to get funding for real research into causes (vaccines, etc.) and effective therapy and treatment. The committee has addressed issues of epilepsy and gastrointestinal issues, but those are only two of the many medical and psychiatric issues that affect children and adults with autism.

The IACC has not provided ONE new treatment or therapy for autism in all the years it has been in existence. And it costs taxpayers $1.38 million a year to run. But I don't think the committee is going to make much progress until the composition of the membership is changed.


What we are seeing is a major medical pandemic occurring and our children are ill with a neuroimmune dysfunction. The cure is a medication known as an immune modulator and a doctor named Michael Goldberg could conduct clinical trials with these medications that would cure our children of this disease. The clinical trials need to be done with these medications and there will be a chance and hope for full recovery.

bob moffit

"Since the Committee’s creation in 2000, the number of American children with autism has increased 120 percent, from 1 in 150 in 2000, to 1 in 59 in 2014, according to the U.S. Centers for Disease Control and Prevention. The age of diagnosis has barely budged, and no new treatments have been identified. Autism is on track to cost up to $1 trillion by 2025 in medical, nonmedical and productivity losses, according to a University of California, Davis study."

This single paragraph clearly identifies the complete FAILURE of the IACC since it was created in 2000, when autism was diagnosed in 1 in every 150 .. to the absolutely frightening recent 1 in 59 autistics. Almost TWENTY YEARS and the IACC has produced absolutely nothing of scientific substance or value in identifying what is CAUSING the epidemic .. or .. how to treat it.

Remembering the late Dr Bernard Rimland's observation the original COMBATING AUTISM ACT would be better named the (NOT) COMBATING AUTISM ACT .. as Katie Wright's AoA column accurately predicted:


First two paragraphs:

"This is an open letter to all the parents, families, teachers, therapists and others who worked so hard getting the CAA bill passed. Thousands of you called, e-mailed and wrote to your representatives. Dozens of families traveled to DC to meet with their Congresspersons and Senators and personally explain why autism research and services desperately need more funding. Some of you picketed the offices of non-supporters, my parents traveled to DC a dozen times and used every connection they had to make our families heard. It required Herculean efforts to pass a “single disease” bill but our community was relentless and determined.

Today The Interagency Autism Coordinating Committee is responsible for disbursing the millions of dollars in CAA funds. Almost no one who worked for the passage of the CAA was appointed to the committee. IACC is packed with bureaucrats who seem to have a very limited understanding of autism as a disease and autism science. Only Lyn Redwood, who has an encyclopedic knowledge of autism research, of NAA and SafeMinds is representing my child and the hundreds of thousands like him. Only Lyn comprehends the tremendous medical challenges facing our children and urges IACC to fund research that reflects a sense of urgency and purpose."

Obviously .. TWENTY YEARS LATER and the IACC is STILL .. "packed with bureaucrats who seem to have a very limited understanding of autism as a disease and autism science"

I can't tell you how many of my elected representatives that I have contacted begin each and every reply with the assurance they SUPPORTED THE COMBAT AUTISM ACT. I suspect today those very same legislators would be reassuring me .. and .. more importantly themselves .. they supported the 2014 AUTISM CARES ACT .. perfectly content to ignore the decades of FAILURE AT THE IACC.

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