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National Council on Severe Autism
PO Box 26853
San Jose, CA 95159-6853

Joshua Gordon, MD
Chair, Interagency Autism Coordinating Committee
National Institute of Mental Health
6001 Executive Boulevard, Room 6200, MSC 9663
Bethesda, MD 20892-9663

Via email: iaccpublicinquiries@mail.nih.gov, joshua.gordon@nih.gov

October 12, 2022

Re: Public Comment for October 2022 IACC Meeting

Dear Dr. Gordon:

The Interagency Autism Coordinating Committee’s recent discussions, including those regarding development of the Strategic Plan, have been a disappointment. The sessions were often dominated by issues relevant only to the highest functioning slice of the autism population, with scant content devoted to the realities, needs and priorities of the great majority of U.S. autism families.

We were also alarmed to see members angling to cleanse the Committee’s (and Plan’s) language of basic, accurate and meaningful terminology like “behavior,” “risk for autism” and “quality of life,” suggestions which were treated seriously by IACC leadership. As Dr. Daniels stated, staff was actively working to remove words like “risk” and instead highlight resilience and strengths-based language in the forthcoming Plan. The clear trend here is toward a Plan that treats autism as a neutral condition or difference. But Congress did not pass the CARES Act because autism is a neutral or strengths-based condition.

Congress allocated millions of tax dollars to research because it is increasingly urgent to identify causes and treatments for the serious disorder of autism that imposes incalculable costs on our families and service systems, not because it is a neutral variant of brain functioning.

That a child with autism cannot learn to speak or develop abstract thought is not a neutral issue.

That a child with autism engages in self-injury or perpetually elopes or destroys property is not neutral.

The abnormal neurogenesis, neural migration, synaptogenesis, and neural connectivity evident in autism are not neutral biological phenomena.

That countless siblings live in fear of being attacked by their brother or sister with ASD is not neutral.

That a child with ASD faces life-threatening seizures, pica or gastrointestinal distress is not neutral.

That a child with autism suffers unrelenting insomnia causing family-wide sleep deprivation is not neutral.

That parents must sacrifice careers, incomes and their own independent lives to permanently care for seriously disabled children and adults with autism is not neutral.

When children autism lack basic safety awareness, to the extent they may rigidly refuse to exit a burning house, their disorders are deadly and certainly not neutral.

That growing numbers of adults lack basic cognitive functions to live independently is not neutral.

The steady growth of autism prevalence, now closing in on 3% of U.S. children (and 5% in some areas) is a national crisis and not remotely neutral.

That we suffer a terrible shortage of inpatient placements, crisis care centers, child and adult psychiatrists, medical personnel trained in autism, and residential support centers to treat the surging population disabled by autism is not neutral.

There is nothing inclusive about neutral or strengths-based language that specifically excludes or denies realities of autism, particularly severe autism. This is a high-stakes debate. We must ensure all federal efforts relating to autism are based on reality, not fantasy. If we must be neutral about autism we cannot emphasize the most urgent priorities facing our community, to wit:

• What is causing the continuing surge of autism cases, particularly moderate to severe cases requiring lifelong intensive supports?

• How can we characterize the different segments of the autism population by level of adaptive function, behaviors and other characteristics so we can project nationwide care, support, and housing needs 5, 10, and 20 years out?

• How can we reduce risk for or prevent autism in successive children, and in later generations?

• How can we bend the course of autism to ensure the best, most functional outcomes possible?

• How can we stop severe life-ruining and sometimes lethal behaviors such as aggression, self-injury, pica and elopement?

• How can we address the autism services, housing and staffing crisis affecting every state?

While the IACC neutralizes language about autism, families on the other hand rely on medical necessity, and the neural and behavioral impairments, disorders and pathologies underlying it, to attain desperately needed supports. For most of us in the real world, impairments, dysfunctions, deficits, disorders, dependency, and not “strengths,” define the daily experience of autism.

The IACC was intended to encompass the representation of the entire population disabled by autism to tackle the serious national crisis engulfing our families and communities, but the unbalanced slate of membership of the committee has led to a highly distorted discussions about priorities for federal agency efforts.

We trust that in spite of this, the IACC and Strategic Plan will be fully inclusive of all realities of autism, including severe forms of autism, focusing on true community priorities, using language that accurately captures our community’s dire realities, and that has not been sanitized.

Thank you for your consideration of our concerns.

Signed,

Jill Escher, President

Amy Lutz, PhD, Vice President

Gloria Satriale, Secretary

Denise Lombardi, Treasurer

Arthur Westover, MD, Board Member

Lee Elizabeth Wachtel, MD, Board Member

Pankhuree Vandana, MD, Board Member

Alison Singer, Board Member

Lisa Parles, Board Member

Judith Ursitti, Board Member

Maysoon Salah, Board Member

Eileen Lamb, Board Member

Kelley Bermingham, BCBA, Board Member

Originally posted on NCS Autism