Pretending autism is just a difference instead of an incapacitating disability allows for de-funding of precious social programs, and ultimately the abandonment of our severely disabled.
By Rosanna Armendariz
I am an autistic adult and the parent of an 11 year-old son with moderate-severe autism and significant learning delays. Sadly, I am often reminded that despite the memes we see on pro-neurodiversity Facebook pages, “autism acceptance” and even “autism awareness” mostly apply to the high functioning and successful: the 6 year-old regional chess champion, the 10 year-old science fair winner, the tech wizard in Silicon Valley. One such reminder came a few months ago when my son and I were out for our evening stroll.
My son often engages in stimming where he twists and contorts his fingers and hands into unusual positions as a means of self-regulation. He is doing this as we walk. An older man behind us chides me because he thinks my son is “flashing gang signs” learned from the “cholos” at school. (All parties are Hispanic or at least Hispanic-looking [I am multiracial], so this isn’t a case of a white person being racist towards brown people.)
I explained I homeschool and provided assurance that my son has not been hanging around with “cholos” or gang members. Then I attempt to explain that my son has autism and is merely stimming. He said his grandson has “one of those kids” in his class who is “a whiz at math.” He wondered if my son had similar exceptional abilities.
The author and her son.
I am by now unsurprised that the average layperson has such an unrealistic view of autism. The representations of autism in the media and popular culture are increasingly skewed towards maximum achievers who are virtually indistinguishable from the non-autistic population. The fictional “Good Doctor” is ubiquitous. And I believe this is by design. If autism can be rebranded as not a serious disability but “a different ability” or even a “super power,” as teen climate activist Greta Thunberg asserts, then the perceived need for support is greatly diminished. Ultimately, I believe it’s all about the bottom line: think of the money we can save by de-funding critical disability services and programs and celebrating “inclusion” and “rights” instead.
Coupled with the rebranding of autism is the ridiculously wide diagnostic label of Autism Spectrum Disorder or ASD found in the DSM-5. I’m not a doctor but anyone can see the label is so wide as to be absurd. It includes celebrities with Asperger’s like Dan Aykroyd, Susan Boyle and Thunberg along with the severely autistic nonverbal 20 year-old in diapers who bites his arms and smears the carpet with feces. Increasingly the latter is pushed into the shadows and made invisible, while the former is celebrated as the real autism or “#ActuallyAutistic.”
My son and I are both considered autistic, yet our challenges are very different. I have struggled all my life with significant sensory processing issues, motor coordination problems, and social communication impediments. As a result I am unable to drive a car, have been fired or forced to resign from numerous jobs, have difficulty maintaining relationships of any kind, can’t swim or ride a bike. Nevertheless, I am able to live independently, completed college and graduate school, married and had a child.
My son, on the other hand, while thankfully not at the most extreme severe end of the spectrum, is nevertheless unlikely to replicate my meager accomplishments. At 11 years old he still requires assistance with basic daily tasks like bathing, teeth brushing, and dressing. He can make requests and express preferences in simple four-word sentences. And while he can recite entire episodes of Blue’s Clues from memory, he can’t have a conversation. He can read and spell at a third-grade level but when in front of a keyboard types out lines from Blue’s Clues and not deep thoughts like prodigious nonverbal autistic Carly Fleischmann.
“My son will depend on social programs which are becoming increasingly scarce or nonexistent.”
With my disastrous employment history and the fact that I’ve struggled financially my entire adult life, I doubt I’d meet the current bar of autistic excellence. My son never will. As a result, I have spent many sleepless nights worrying about his future, especially what will happen to him after I die. I’m not wealthy and can’t put millions of dollars into a trust fund to provide for his needs after I’m gone. My son will depend on social programs which are becoming increasingly scarce or nonexistent. I toss and turn at night imagining my sweet child living on the streets, dying of exposure to the elements, getting hit by a car or murdered by criminals.
“As a society, we must not push the less glamorous manifestations of the disorder so far into the shadows that they are no longer recognized as autism.”
Realistically many with autism will never obtain competitive employment or live independently (even some who are considered higher functioning). As a society, we must not push the less glamorous manifestations of the disorder so far into the shadows that they are no longer recognized as autism. My son’s life, and so many others, hang in the balance.
Rosanna Armendariz was diagnosed with Asperger’s Disorder at age 40. She lives in El Paso, Texas where she homeschools her 11 year-old son with moderate-severe autism.