Autism is a disability -- not a 'natural difference to be celebrated'
Autism rates keep climbing -- nearly 3 percent, of all eight-year-olds in the latest estimates -- yet there's no sense of crisis, writes Jill Escher on The Free Press. The “neurodiversity” identity movement has cast autism "as a natural difference to be celebrated, not investigated, prevented, or treated."
By focusing on high-functioning, high-IQ people, we are "sugarcoating and trivializing this serious mental disability and the galactic challenges wrought by its dramatic growth," she writes.
"Despite extensive therapies and specialized schooling," Escher's two children -- now 24 and 17 -- are unable to talk, read, write or understand basic concepts beyond the toddler level. Once a lawyer, she left her job to care for them. She is the president of the National Council on Severe Autism, and a board member of Autism Society San Francisco Bay Area.
About 27 percent of U.S. children with autism have IQs under 50, known as "profound autism," she writes. "In the great middle of autism, those with IQs in the 50s, 60s, and even 70s range, and who have some language, are typically very seriously disabled." Even those who are high-functioning often have trouble navigating adult life.
Policies that assume every person with autism is an eccentric genius do a grave disservice to the disabled, Escher argues. "Now, prevention of autism is pretty much off the table," while the focus shifts to ensuring nobody refers to autism has a problem, much less a disability. "Issues affecting the most severe cases are largely drowned out."
Meanwhile, disability policies based on fantastical conceptualizations of ability are creating cruel consequences for our most vulnerable. The few jobs that are within the grasp of many adults disabled by autism are under threat of complete elimination. A push to eliminate sub-minimum wage job programs, which offer the only legal avenue to employment for the severely cognitively disabled, means people like my kids will lose their only chance at structured, supported, productive work, and will be pushed even further to the margins of society.
State Medicaid programs promote inclusion, which works for the mildly disabled, Escher writes. Setting "unrealistic goals of independence and self-determination, can punish new programs needed to serve those who require total, around-the-clock care."
Autism parents are aging, she writes. An adult services "catastrophe" awaits.
The people with autism in my family are in the high-functioning, (very) high-IQ category. Quirky Acceptance works for them. But building autism policy around the least affected is a mistake.
Rita Range, an occupational therapist writing in Quillette, also thinks the neurodiversity movement has gone too far.
For example, children with autism prefer "solitary, cause-and-effect-type play, sorting and lining up items etc." Therapists have "developed interventions to gently shift children’s play skills and tolerance for different types of play, so that they engage in more symbolic and imaginary play and are more tolerant and inclusive of their peers in the process," she writes. However, the “neuroaffirming community” opposes play therapy. “All play is good play,” they say.
"A generation of young people may not receive the intervention that might have supported them as they develop the social and play skills needed to build friendships, strengthen language and communication skills, and learn to think more flexibly," Range writes. "Alternatively, there may be a generation of young people with autism who are relieved that they were never pushed to conform. We will have to wait and see."