In a Different Key
In a Different Key by John Donovan and Caren Zucker[2] is a historical exploration of all the hard work that parents of autistic kids put into forcing their little brats to finally act normal so Mommy and Daddy could be happy for once. It also discusses why those rude autistic adults should stop trying to stand up for themselves and quietly accept that their parents want to erase autistic DNA from the gene pool.
“”#InADifferentKey in a nutshell — Cattle prods, murder, dehumanization: Let's not rush to judgment! Hurt a parent's feels: YOU MONSTER! |
—Shannon Des Roches Rosa, mother of a high-support autistic son[1] |
If you want to read a book that treats autistic people like actual humans, try NeuroTribes by Steve Silberman.[3] Zucker and Donovan lack empathy for autistic people.
Issues
“”This history is a complex and nuanced one, yet Donvan and Zucker tell a fairly straightforward David and Goliath narrative. The role of the villain, Goliath, is played not by a person, but by autism itself. Anyone fighting autism becomes the book's sympathetic, underdog David. |
—M. Kelter[4] |
While the book was possibly well-intentioned,[4] it takes a limited point of view by presenting autism as unquestionably evil and those who wanted to fight it (even by torturing autistic kids or committing murder) as sympathetic heroes.
Abuse apologism
Applied behavior analysis (ABA) is a method of torture reward and punishment popularized by Ivar Lovaas. It is commonly used to train autistic children to adopt non-autistic behaviors, like sitting perfectly still and staring into others' eyes no matter how uncomfortable they feel. Today, researchers have found a major correlation between ABA and PTSD,[5] with numerous potential negative side effects.[6]
Zucker and Donovan briefly point out that inflicting pain on autistic kids is, you know, wrong. But they spend little time on the suffering of the children who were starved, slapped, and subjected to electric shock under Lovaas. The therapy had to be intensive, because without fear of therapist control, the kids would revert to their calming autistic behavior. Yet Zucker and Donovan say "ABA worked, the more of it the better, and a whole lot of it held out a nearly 50/50 possibility of achieving the previously impossible."[7]
Attacking terrified children with a cattle prod? Apparently okay, as long as you teach them to suppress their natural body language.
The writers support ABA without question, despite the terrible methods, unproductive goals (forcing a child to act "normal" rather than gain adaptive skills), and frightening side effects.[7]
Stigmatizing autism
“”But this was only the first of numerous – too many to count – anecdotes about autistic children which described them repeatedly as odd, strange, violent, disconnected, destructive, dangerous, difficult to handle, their behaviors meaningless, their interests obsessive. As isolated, unspeaking, severe, uncooperative, and having illogical anxiety. They describe autistic children as vanishing, having broken minds, as screamers, runners, and head bangers. These are the words that Donvan and Zucker use to perpetuate a tragedy narrative that is meant to justify every horrible thing that will be done to these children by parents and professionals. |
—Erin, autistic adult[7] |
If people were constantly referring to you that way, you might experience anxiety or try to run away too. Of course, acknowledging this would mean acknowledging that autistic people can have a valid point of view sometimes, which this book prefers not to do.
It even routinely fails to describe autistic people as humans, claiming that researcher Lorna Wing went "home to autism" each night, instead of her going home to her child.[1]
Autism isn't nearly as bad as the book makes it out to be.[4] Life is harder for autistic people, and they face real challenges. But that doesn't mean their lives aren't worth living.[citation NOT needed] Many of their so-called "bizarre" behaviors are actually adaptive, such as avoiding eye contact when it inhibits pleasant conversation[8][9] or making repetitive movements to help stay calm in a challenging situation.[10] Autism also involves positive aspects (such as passionate interests and a strong desire to help others) that benefit them and their communities.[11] Plenty of autistic adults describe valuing their lives.[12][13]
But why acknowledge complexity when you can make autism out to be an evil miasma that must be destroyed at all costs?
Double standards
“”One is left with the impression that an autistic person expressing a strong contrary opinion is mind-blind, whereas a researcher or parent who does so is merely passionate. |
—Ari Ne'eman[14] |
The narrative empathizes with parents of autistic children, never autistic people.
Horrifyingly, the book treats the murder of 13-year-old Dougie Gibson at the hands of his father as a "mercy killing."[14] Describing the trial, Donovan and Zucker write "The DA's competing story – that Alec was tired of the sacrifices required and just wanted his freedom back – appealed more to a common sense that knew nothing of raising a child with severe autism. No members of the jury had such experience. He was found guilty." Because murder is bad… except when the child is autistic. Yikes.
When autistic advocates speak up for themselves, Zucker and Donovan push back. When autistic writer Jim Sinclair argued that it was wrong to try to turn an autistic child non-autistic (which is both scientifically impossible and damaging to the child's self-esteem for obvious reasons), Zucker and Donovan claimed it "jarringly reminiscent" of the refrigerator mother theory of autism.[14] (A "refrigerator mother" supposedly causes autism in the child by hating them.) The writers, in their rush to criticize autistic adults' self-advocacy, ignore the fact that many of these adults are trying to help the so-called "low-functioning" autistic people too.[1]
When Lovaas, the child abuser, spoke boldly, he was "entertainingly reckless in the language he used." When autistic advocate Ari Ne'eman spoke boldly, he was "unyielding," unempathetic, and unable to "take on a point of view other than his own."[14]
According to Zucker and Donovan, the current story is about autistic people versus parents. "If [the book's] eternal battle of autistics vs parents were true, I'd be at constant war w/myself," tweeted Shannon Des Roches Rosa, an autistic parent of an autistic child.[1] But when you have a very specific type of story you want to tell, perhaps nuance isn't important.
Failure to fact-check
According to Zucker and Donovan, the neurodiversity movement argues that "autism is not a disability." Perhaps they aren't aware that the autism rights movement is specifically part of the disability rights movement, or that one of ASAN's first tasks was ensuring that autism counted as a disability under the Americans with Disabilities Act.[14]
They also didn't get the facts right on vaccines. They contained ethylmercury, not methylmurcury, and the MMR vaccine never contained thiomersal.[1] And while they discussed the anger over Dr. Paul Offit profiting from the rotavirus vaccine, Zucker and Donovan failed to mention the years that Offit spent working on the vaccine or the hundreds of thousands of lives saved by it.[1] They erroneously claimed that the polio vaccine sometimes causes polio, when this was only true of the oral vaccine (not the injection).[1]
They also don't seem aware that ABA hasn't gotten all better. The Association for Behavior Analysis still endorses the use of corporal punishment, contingent food programs (i.e., "obey me if you want to eat"), and pinning down children against their will.[14]
References
- In A Different Key: Not The Autism Book You're Looking For (Live-Tweeted Review) — Shannon Des Roches Rosa
- In a Different Key: The Story of Autism by John Donovan and Caren Zucker (2016) Crown. ISBN 0307985679.
- Neurotribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman (2015) Avery. ISBN 158333467X.
- In A Different Key: One (Deeply Flawed) Story of Autism - Thinking Person's Guide to Autism
- Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis — Advances in Autism
- How much compliance is too much compliance: Is long-term ABA therapy abuse? — Cogent Psychology
- Cognitive Dissonance In A Different Key, by Erin Human — NeuroQueer
- Should We Insist on Eye Contact with People who have Autism Spectrum Disorders — Indiana Resource Center for Autism (tl;dr nope)
- For Those With Autism, Eye Contact Isn't Just Weird, It's Distressing - Science Alert (complete with a distressing photo)
- New Wearable Detects Meltdowns Before They Happen — NOS Magazine
- How to Understand Autistic Strengths — wikiHow
- I Like Life — Autistic Dreams
- Celebrating My Life — Ollibean
- The errors — and revelations — in two major new books about autism - Ari Ne'eman