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.”
There’s now a growing push to separate profound autism — in which people need constant care for life, have a certain level of intellectual disability and are nonspeaking or minimally verbal — into its own diagnosis. The hope is that it would help ensure that people like Connor and Ronan get the support and services they need and that research includes them.
In the United States, an estimated 1 in 31 children have autism spectrum disorder. Researchers estimate around a quarter have “profound autism,” a term introduced in 2021 by a group of experts, the Lancet Commission, to describe people most disabled by the developmental condition.
But some in the autism community worry that creating a separate diagnosis would reduce attention on the broader spectrum and the individual needs of everyone on it.
Andy Shih, chief science officer for Autism Speaks, said no matter where people fall on the debate, “there’s absolutely no doubt that we need to elevate awareness about the needs of this group.”
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Judith Ursitti, president of the Profound Autism Alliance, is among those who now want profound autism separated out. People in this category lack appropriate treatments, supports and enough providers trained to handle their level of care, she said. And the vast majority of clinical research doesn’t include them.
“If you don’t have research, you won’t have treatments. You won’t have achievable services and supports,” said Ursitti, whose adult son has profound autism. “There are people across the spectrum who have high support needs that are intermittent. The difference with our population is they’re constant.”
But Dena Gassner of Drexel University’s autism institute -- an autistic senior research scientist and mother of an autistic adult with moderate support needs -- said she struggles with the idea of assigning someone the label of profound autism. She said it could be stigmatizing.
She said there’s nothing wrong with being autistic; the problem lies in “the massive lack of supports and services” in our society. “We need to come together in a unified voice to talk about services for the entirety of the spectrum.”
