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.”
[Allison] Singer, who is the head of the Autism Science Foundation, a nonprofit that funds autism research, is one of a group of parents and clinicians who are calling for the autism spectrum diagnosis to effectively be split in two, saying it has become so broad that it is obscuring the experiences of the seriously disabled people it was first meant to describe, like her daughter.
At major autism conferences and in scientific journals, the group has proposed the creation of a separate category, called profound autism, for people with the most severe disabilities.
An estimated one in 31 8-year-olds in the United States has an autism diagnosis, according to the most recent data, up from one in 150 8-year-olds in 2000. While the most severe autism cases account for a small part of that increase, most of the surge reflects a rise in the number of higher-functioning people getting diagnosed.
Parents of children with severe autism say the wider diagnosis has come at a steep cost: Research that includes people with the most significant impairments has declined year over year, even as overall funding for autism research has grown substantially.
And a survey of 800 families, conducted this year by the National Council on Severe Autism, found that 80 percent had been told their children were too disruptive even for classrooms and services tailored to students with autism and other disabilities.
“Autism has become so diluted, we can’t really tell what we’re talking about anymore,” Jill Escher, the founder of the national council who has two adult children with profound autism, said.
Prevalence of children with autism
While both profound and non-profound autism among 8-year-old children increased from 2000 to 2016, the increase was greater for non-profound autism.
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