Who Should Be the Voice of Autism?

Has the Neurodiversity Movement Forgotten The Most Disabled and Their Parents?

When Ian was three, the local school district sent him to a neurologist to see why he couldn’t talk. After a few background questions for me about my pregnancy and his birth, she turned to Ian, and said, “okay, let’s see what’s going on here.” She pulled out a wooden puzzle with a dozen barnyard animals and dumped them on ground. I smiled and said, “wait until you see this.”

Ian glanced down at the puzzle pieces of the cow and the dog, picked up one by the little peg, and slapped into the wooden puzzle board without hesitating or jiggling the piece to fit it into place. Slap. And it was in. And then he did it again and again. Fast and perfect, without looking at us once to register our reaction and without any comments at all. I handed him a candy reward.

“Wow,” said the neurologist. At the end of the appointment, she said that he couldn’t talk because he was smart. (Yes, doctors really did say that twenty years ago.) As we later learned, Ian is smart, and he’s also autistic. But autism looks differently in every person, and few have Ian’s combination of strengths and weaknesses.

In a viral article for The Free Press — Bari Weiss’s substack — Jill Escher writes that the neurodiversity movement, which celebrates autism and normalizes it, has done real damage to her family. Escher say that those autism advocates do not speak for her or her two profoundly autistic adult-children, completed derailed the effort to find causes of autism, and distracted from the real desperate need to create programs for adults with autism.

The neurodiversity movement, which gathered steam in 2010, maintains that autism is not a disability, but a feature of normal human variation, and in some cases, an evolutionary advantage. I once joked described that this movement should be renamed, Woke Autism, but they’ve been very successful in reshaping the terms of the debate and even transformed advocacy at the mega-foundation, Autism Speaks.

But if autism is normal, then the state doesn’t feel the urgency to provide housing, adult day-cares, and recreational activities. Schools are relieved from the pressure to provide adequate support for younger people. It’s all celebration, but no action; it neglects the huge needs of individuals and families. (I wrote more here about how autism is a HUGE political problem here with all the numbers and everything.)

The neurodiversity movement certainly opened doors for some autistic people. Colleges have begun to set up programs for autistic students, who can complete the classwork, but can’t make friends. When he’s finished with his computer science training, Ian will be able to apply for jobs at computer companies in New York City that have been set aside for people on the autistic spectrum. All of that is great.

But only a handful of people with autism can build their own computers by watching YouTube videos. (Ian did that this summer!) Most have bigger issues. Escher describes her own children:

… she cannot talk, read, or write, or grasp even the most basic of abstract concepts—not even family or week or birthday. While young ladies her age are applying to college, she’s still not sure how to brush her teeth or put on her socks. Her learning is stuck, Groundhog Day-like, at a toddler level.

So, there are a lot of different kinds of autism, which require a lot of different types of support. Nothing should be taken off the table. Yes, we need alternative job interview techniques, and we need awesome residential facilities for adults.

To get to those ends, we need a diversity of national personalities speaking for the whole autistic population. We also need parents to be part of this conversation, especially for those who can’t talk or advocate for themselves.

It’s impossible to talk about disabilities without including the parents. My life has been forever altered by having a child with autism. Every decision of my adult life, from my career to where we live, has been shaped by autism. It’s absurd that I should be excluded from any political discussion of autism, when the world expects me to manage this whole burden on my own.

Yet, some in the neurodiversity movement view parents as villains — abusers who force autistic people to go to therapy or usurpers in their advocacy battles. I’ve had to block a couple autistic self-advocates on Twitter, who attacked me — a mere parent — for writing about autism. Autism is their turf, they say.

Escher’s piece ends with the huge problem of adult services. When school ends, it’s been said that autism services “fall off the cliff.” Too many young adults are bored and isolated in their homes with their aging parents.

Even those with lesser needs face real problems getting help. For the past couple of years, I’ve worked to set up my son to be self-sufficient-ish. With epilepsy and autism, my son has a life expectancy of age 35. Too many people like him die of a seizure or suicide. So, he needs supportive housing to help him socially and medically. While we he spends 25 years on a waiting list for that housing, I’ll be driving him to therapy and doctor’s appointments, helping him sign up for classes at the community college, filling out his disability paperwork, and arranging his social activities for quite a long time. The process has been so difficult that I write a newsletter for other parents to share our transition efforts.

Escher also points out that when we die, the state is going to have to figure out how to care for all these individuals. It’s a looming disaster that gets no attention.

So long as we are riding the identitarian train of autism, we are ignoring the adult services catastrophe that most assuredly awaits us. As we lose autism parents, we lose nearly everything that makes life possible for every person disabled by autism: the housing provider, the 24/7 supervisor, the program manager, guardian, trustee, financial manager, benefits manager, advocate, cook, driver, hygienist, housekeeper, launderer, medical supervisor, recreation provider, interpreter, iPad fixer, handyman, protector from abuse and neglect, and of course, the main source of love and nurturing. It’s the equivalent of more than a dozen jobs if not more, plus jobs money can’t pay for. 

The neurodiversity movement is a mixed bag. I do appreciate the doors that they’ve opened for my son and for enabling me to talk about his autism without stigma, but it’s done nothing to provide support for his on-going disabilities. For those with adult-children with profound autism, the kind that requires 24/7 oversight, the neurodiversity movement is all boots and no cattle, especially when those advocates may denigrate and minimize the work of the parents.

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Shopping for States

It’s my birthday. Yay! We’re going to the New York City when Ian comes home from his summer program. We’ll bop into the Met and get happy hour margaritas at a cute Mexican restaurant. Have a great weekend!