Search This Blog

Saturday, April 22, 2023

ASF Lobbyist Argues for "Profound Autism" Designation

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.