Combatting autism, again 

What if 1 of every 218 American children [the CDC calculation is 1/(4.59/1000)] faced lifetimes of pain and panic, unable to communicate their distress, having a much shorter life expectancy than their unafflicted peers, their families usually broke and often broken as they seek medical care and services that are terribly inadequate. 

Surely, this would be a public health crisis. Science would be mobilized. Anything less would be seen as a matter of human rights abused and equity denied. 

But what if the response to all this was instead thorough denial, based on an ideological filter through which these facts pass and emerge as a story in which these children are not sick at all and not needing to be made well? 

This is the situation today for the Americans suffering “Profound Autism,” approximately 27 percent of all the Autism Spectrum Disorders (ASD) diagnoses according to the landmark new CDC report just released, the first to examine the prevalence of profound autism (and to use that term). 

And to all those who know and love individuals and families facing profound autism, it is beyond unacceptable. 

I was first made aware of skyrocketing rates of autism when being lobbied while serving as chief of staff to Sen. Arlen Specter, who sat on the Appropriations’ Subcommittee funding the NIH. 

When I became a lobbyist myself, my first client was Cure Autism Now (CAN), co-founded by Hollywood producer Jonathan Shestack. 

“If you’ve met one person with autism, then you’ve met one person with autism,” Shestack would say, illustrating the heterogeneity of the phenomenon, and “if you haven’t met someone with autism, you surely soon will,” he prophetically warned. 

We used CAN’s influencer friends in entertainment, and the army of parents they convened, to petition for the redress of this grievance. For a time, it seemed to be working. 

In 2006, Congress and the president enacted the Combatting Autism Act, intended to expand and intensify national efforts, persuaded by the argument that autism and Alzheimer’s were emerging lifecycle bookends, crushing the quality of life of too many American families and the projections of the economic costs of autism. 

But a funny thing happened on the way to combatting autism, something that left Alzheimer’s’ advocates racing ahead but the profound autism community floundering — the rise of self-advocates, people with ASD diagnoses but not the symptoms and impacts of profound autism, and their ideology of neurodiversity. 

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. 

Let me be clear: The neurodiversity movement has done much good. It has turned much of the historically “normal” bullying and invidious discrimination against people with different forms of social expression into respect for atypical ways of being. 

Those of us advocating for the extraordinary needs of those facing profound autism wish to take absolutely nothing away from anyone else, but we cannot comprehend our government and culture failing to respond to the suffering wrought by profound autism. 

Over the next year there is a new opportunity for America to get this right. 

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. 

Craig Snyder is former chief of staff to Sen. Arlen Specter and was the principal lobbyist involved in the enactment of the Children’s Health Act of 2000 and the Combatting Autism Act of 2006. He currently represents the Autism Science Foundation.