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.”
Judith Ursitti, president of the Profound Autism Alliance, told the Washington Examiner that ending genetic research on autism simply because of the risk that it could be used to justify selective abortion is to throw the baby out with the bathwater.
“What we have to do is focus on finding ways to prevent eugenics while we’re making progress,” said Ursitti. “It’s a tough situation, but humanity is capable of doing good things with powerful science.”
Ursitti, the mother of an autistic son with high support needs, said Kennedy’s description of people with severe disabilities “did not really respect the dignity of people with profound autism.” Still, she said, she supports the administration’s efforts to improve research on the causes of autism for the purposes of developing treatments for severe symptoms.
PAA has been instrumental in advocating the term “profound autism” and establishing more standardized research criteria. PAA’s definition of profound autism requires that an individual needs 24/7 care from an adult their entire life, has minimal or no language ability, has an IQ below 50, or a combination of all three criteria.
The CDC found in 2023 that roughly 27% of children diagnosed with autism fit the PAA’s criteria for profound autism. PAA’s research has found that individuals with profound autism are only included in 6% of the clinical research on the disorder.
“There is, in our world, a lot of suffering,” said Ursitti. “There’s death, there’s really horrific self-injury. And again, we value human beings that have profound autism. We love them. We want them to contribute to the world. But the suffering has kind of been pushed to the side a little bit.”
Ursitti highlighted that there are no pharmaceutical options on the market for autism-related aggression or depression symptoms, but understanding the etiology of autism could result in autism-specific pharmaceuticals or therapies.
