Thursday, March 10, 2016

Cognitive Dissonance In A Different Key, by Erin Human

Cognitive Dissonance In A Different Key
Erin Human

CN and TW for ableism, abuse, torture, behavioral training, institutionalization, filicide, and basically everything that could be triggering for autistic people and some parents of autistic children. I will be using direct quotes from In A Different Key that employ profoundly ableist ideas and language. Also a note that I will usually use the acronym IADK instead of the full title of the book, and will emphasize in bold and/or italics some of the quotes from the text.
The press release for In A Different Key : The Story of Autism by John Donvan and Caren Zucker says that this book was “written by two journalists personally committed to widening respect, understanding, and support for the loved ones in their families – and in every family touched by autism.” I want you to keep that sentence in mind as you read my review. I want you to note that the supposed object of this widened respect is the autistic person, and remember that as you read on.
In the preface the authors lay out the premise that this book will be about parents, and that “their two main goals – to find out why their children have autism and to make it go away – remain unfulfilled.” 
Acceptance for the Strangest Boy
IADK then begins by telling the story of Donald Triplett who, as a child, was Case 1 for the infamous autism diagnostician Leo Kanner. These chapters are essentially an expansion of the authors’ 2010 article for The Atlantic, “Autism’s First Child.”
As the Triplett family is praised for resisting the pressure to institutionalize Donald (well, after first trying it out for a year) and using their wealth to ensure his acceptance in the community (well, even though they did send him off to the countryside to be raised by another couple), the ableism in the text is a bit subtle. I thought that I might be criticized for overanalyzing things as I underlined the words the authors used to describe Donald as a child, words like violently inflexible, peculiarities, oblivious, wild tantrums, odd, deficits, emotional indifference, strange, the strangest boy, her taxing child, obsessions, obsessed, obsessive. It was a challenge to be friends with Donald. 
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 asvanishing, 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.
The Donald Triplett story serves as a framing device (the book concludes with a story about his 80th birthday party), because it encapsulates the Donvan/Zucker Model of “Acceptance”: Autistic people are very strange, hard to deal with, and not like us, but it’s not their fault they have a disorder, so we will tolerate them, help them act less autistic if we can, and generously create some token place for them in our community.
The Birth of Autism Moms
IADK spends some time on the Refrigerator Mother myth of the 50s and 60s, and the backlash against this myth: the rise of The Autism Mom (and Autism Parents more broadly). The expiration of the Refrigerator Mother myth, claim the authors, was “due to a concerted effort, launched by parents in the 1960s, to replace mother blaming with research into the causes of autism.”
At no point do the parents in this narrative pause to consider autism acceptance as an alternative to “trying to make it go away.” I know for a fact that some parents in the real world have done that, but they are not in this book. Instead, the authors take it as a given that “parents of disabled children so often feel a twinge of guilt deep inside – the unbearable suspicion that their children are paying the price for something they have done.”
Why this matters, I believe, is that this need to absolve themselves of guilt quickly grew into a grotesque quest to “blame” someone else for “causing” autism. Immeasurable harm has come from that quest, much of it described in detail by IADK. 
This section includes profiles of two autism parents named Ruth Sullivan and Bernie Rimland. We can thank Sullivan for many of the ableist storylines about autism that are still in play today: she “wooed reporters” by describing autistic children as “strange and wondrous,” mysterious, having strange gifts, and made sure to emphasize their physical beauty so as to “make the public care.” Rimland, according to IADK, “always thought of autism itself as his primary enemy, as a foreign entity that needed to be defeated.” These two were the founders of the National Society for Autistic Children (NSAC), which would become the currently active organization, the Autism Society of America (ASA).
Justifying Filicide 
As many autistic reviewers have pointed out, the low point of IADK is when it justifies the murder of an autistic teenager killed by his father. Though filicide sympathizers would have you believe that “mercy killings,” as they call them, happen because a lack of support, IADK is actually more candid: Dougie was murdered because life as a disabled person was seen as not worth living, both by his parents and by the authors who present that point of view sympathetically.
But I will give you the authors’ justifications for murdering an autistic child:
“Alec killed Dougie to put him out of a misery he believed to be inevitable”
“It would only get worse”
“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.” 
IADK then neatly parlays this awful incident into the story of how local parent activists successfully exploited Dougie’s murder to garner public sympathy for their campaign to get inclusive education for autistic students. The parents moved the battle for education reform forward “partly because of what happened.” (Later, the authors reveal that it was actually an unrelated legal battle in Pennsylvania that spurred real nationwide education reform, so this filicide justification is totally gratuitous and false.)
Institutions 
The history of institutionalizing disabled people is a history worth knowing. To the extent that we can trust a book riddled with inaccuracies and generously peppered with ableist attitudes, there is some interesting reading on the topic of institutionalizing autistic people and people with psychiatric and cognitive disabilities. To their credit, the authors do celebrate the widespread closing of brick and mortar asylums; however, there are more ways to institutionalize people than by locking them up in buildings.
And indeed, while purportedly exposing the abuses of asylums, the authors also deliver a chilling justification for old fashioned institutionalization. Being a parent is hard enough when a child does not have a serious disability. But when he does, [the] unrelenting pressure cannot help but take its toll. Indeed, there had been some truth in the argument that the doctors made to parents through the decades when they prescribed institutionalization. It was no solution for the child, but it did address, in one stroke, a large part of the parents’ problem, which was real and acute. For some families, twenty-four hours a day of handling severe autism, unrelieved, is a challenge beyond what love alone can handle.”
The Triumphs of Torture
The original purpose of ABA therapy, as developed by Dr. Lovaas, was to “get children with autism to behave in ways that made them look and act less autistic.” Donvan and Zucker tell us that indeed he “achieved mastery” over the autistic behaviors of his test subjects – young children – but with short term effects. Autistic children tended to “relapse” with time spent away from therapy. This is the reason that, to this day, it’s considered common knowledge that for ABA to “work” it must be applied at least 32-40 hours per week and ideally “nearly every waking moment” of a child’s life, as Lovaas applied it in his later studies.
Nevertheless, IADK tells us: “The work […] was worth the time and the suffering. ABA worked.” 
This suffering included at first electric shocks, cattle prods, slaps to the face, starvation, and isolation. Our authors directly justify these techniques. In one story, a child named Dicky was by turns isolated and starved in order “motivate” him to perform in therapy, but Donvan and Zucker conclude: “The team from the University of Washington hadn’t cured Dicky’s autism, but they had helped him find a place in the world.”
Of course, such grotesquely cruel punishments were not palatable to a wide audience of parents, so they were eventually phased out with more rewards and milder punishments phased in. However, the focus on suppressing autistic behaviors was the same. Lovaas specifically said that he did not believe in autistic people, only autistic behaviors. And he famously said in an interview with Psychology Today“They are little monsters. They have hair, a nose, and a mouth – but they are not people in the psychological sense.”
Over and over the authors tell us, “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.” They repeat parents’ claims that they were able to “recover” children from autism with ABA. They write how “triumph equals recovery” and describe a parent’s ABA memoir as “a love story.” They celebrate the “retreat” of “classically autistic behaviors.” They use the word “triumph” as they describe the disappearance of autistic behaviors, again and again and again.
And this, remember they have told us, is a book about respect, understanding, and support.
The Myth of the Trapped Child
Earlier in the book we learned that Dougie Gibson, murdered by his father, was an autistic child whose parents believed that there was a non-autistic child trapped somewhere inside of the child they actually had. The authors return to this theme later on by noting, “it had had always been the most tantalizing conception of autism, this idea of the ‘real’ son or daughter hidden behind the mask of autism.”
And: “The fierce desire to locate ‘the child within’ was in many ways unique to families dealing with autism. In families dealing with other developmental disabilities, such as Down syndrome, love translated into embracing he child as he or she was, and providing for as many opportunities as possible without hoping for a radical transformation. The parents of children loved their children no less, but many felt a strong impulse to rescue them, and sought out breakthrough treatments to help them do so.” 
I felt that this admission was curiously revealing. It left me wondering why. Instead of pausing to consider the answer to that question, they go on to mention a number of fad “cures” and harmful treatments that parents have used in their attempts to get rid of autism, once again giving abuse a pass: “But no one could ever refute with certainty the possibility that, perhaps for some extremely small number of people, something real and therapeutic did take place at one time, or at least appeared to.” [Emphasis mine]
The Erasure of Nonspeaking Autistics 
One of the most infuriating parts of IADK is when it embarks on a defamation campaign against Facilitated Communication, or FC. FC is used by some non-speaking autistics (and non-speaking people with other disabilities as well) who need support in order to communicate via typing, iPad, letter boards, and so on. Donvan and Zucker once again employ the tragedy narrative of the “trapped” autistic child and the desperate parents to set the stage for their claim that FC is an utter fraud. The idea that FC is fraudulent has been disproven, but that doesn’t stop them from boldly stating, “it was easy for facilitators and parents to delude themselves, and to forget to suspend disbelief about a patently impossible process, because they so badly wanted it to be real.”
Why is this included in their story of autism? Because it suits their agenda to discredit any and all autistic activists who reject the central autism parent mission to make autism go away. There are in fact non-speaking autistics and other non-speaking disability rights activists who use FC to tell us they do not want to be cured, fixed, or prevented. This might give a reasonable person pause, to hear from the very people autism parents most want to cure – the non-speaking, the so-called “severe” – that they accept themselves as they are. So it is critical for Donvan and Zucker to convince you to ignore these voices. And so they tell you it is deluded to believe that the non-speaking can articulate such thoughts. This is ableism of the highest, the most hateful, order.
Parent Power
There’s quite a lot of detailed sausage making in IADK’s history of parent organizations. It’s fascinating if you are fascinated by that sort of thing (I was), but can be summed up pretty succinctly:
In the 90s there were two big autism organizations run by two sets of parents. The Londons ran the National Alliance for Autism Research (NAAR), and the Shestacks ran Cure Autism Now (CAN). NAAR was all about throwing money at scientists to research causes of autism, and CAN was all about throwing money at quacks who could come up with treatments like chelation, supplements, special diets etc. Meanwhile they both started compiling creepy DNA databases in the hopes of “cracking the genetic code” of autism (read: so they can make it go away). Later they would both be absorbed by Autism Speaks, and, together with Autism Society of America, see to it that Congress passed the Combating Autism Act of 2006.
The sordid tale of Andrew Wakefield is one we’ve all heard by now, but in the IADK telling of the story I had the stunning impression that it was actually the aggressive lobbying of parents, rather than the con job by this one rogue scientist, that stoked the flames of autism panic. The “Mercury Moms” group SafeMinds was granted meetings with the NIH, FDA, and CDC. A book came out, called Evidence of Harm, that received a lot of press as it touted the work of the Mercury Moms who “never abandoned their ambition to prove that mercury in vaccines is what pushed their children, most of the boys, into a hellish, lost world of autism.” This narrative helped push through the Combating Autism Act of 2006, and then the president of SafeMinds was actually given a seat on a US Government committee called the Interagency Autism Coordinating Committee. All of that power based on baseless fear mongering and quack science.
Fake Autistics or Fake Acceptance
Having dispensed of non-speaking autistics by denying their ability to communicate, Donvan and Zucker wrap up their parent-centered autism story by cleverly invalidating the rest of the autistic population – those who can speak.
The IADK version of the history of the neurodiversity movement is distorted beyond recognition; it would be tedious to correct its many inaccuracies, but it’s useful to focus on why they tell it the way they do. In this version, a teenager named Alex Plank launches modern autistic culture by creating a web forum called Wrong Planet in 2004. Plank serves their agenda well because he is not an autistic activist and doesn’t identify with the broader autistic community – Wrong Planet is mainly for people who identify as having Asperger’s and are sometimes called Aspie Supremacists.
That subculture neatly bolsters the IADK argument that there are “many autisms” and that the “kind” of autism that people like Plank have is something completely different from the “severe” kind of autism. [editorial note: there are no “kinds” of autism, but this is a central argument to the book] Ergo, autistic activists who argue against cures and eugenics have no right to say what should happen to the “other” kind of autistics. Totally false, but that’s what Donvan and Zucker would have you believe.
IADK then takes aim at Ari Ne’eman, founder and president of the Autistic Self-Advocacy Network (ASAN). The authors employ a classic autism parent entrapment strategy of framing Ne’eman as both “not autistic enough” and “too autistic” to be an effective advocate for autistic people: “Many parents questioned whether he even had autism – of any kind. Some, however, thought they recognized such a dramatic failure of empathy in his pronouncements about them as parents, or at least a failure of tact, that they took it as evidence that he did, after all, match the stereotype of Asperger’s.”
Intriguingly, Donvan and Zucker zero in right there on what specifically they find repugnant about the neurodiversity movement: while they claim to agree that autistic people deserve respect, dignity, and safety – which, they assert, was already achieved through deinstitutionalization – they cannot accept the “radical proposition that a child with severe autism was not, in some fashion, sick.”
Let’s look at that one more time, because this is indeed the crux of the Fake Acceptance model that IADK puts forth: accepting autistic people means keeping them out of institutions while working on curing them of their sickness by any means possible. Or, to put it in the cutesy language they employ at the end of the book, “we would recognize, and take steps to welcome and protect, the odd man out.” And the thing that really makes my ears ring, the cognitive dissonance in this thesis, is that I fully believe that the authors are 100% sincere in thinking that that is the pinnacle of autism acceptance.
History of the Oppressors
In A Different Key is subtitled The Story of Autism. Note that it’s “the” story, not “a” story. And I do believe the effort to lay out “the” story is sincere, in much the same way that your 8th grade history textbook told you how America was discovered by Columbus in 1492. This is a history of the oppressors by the oppressors, presented as neutral factual information. All the better to convince you that their biased view is truthful – indeed, as they at one point describe parental love, “unassailable.”
“For forty years, from the 1960s onward, the work of autism advocacy had been a mission carried out almost entirely by mothers and father dedicated to making the world better for their kids.

Erin Human is a writer, cartoonist, and Art Director for Autism Women's Network. You can find her writing at eisforerin.com and her cartooning is at humanillustrations.com.








8 comments:

  1. That last quote really sums the whole thing up, judging by your brilliant review (I haven't read it, and don't really want to) - autism is a (tragic) thing that happens to kids and parents, and adult autistics either don't exist or are in some way still to be treated as children.

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  2. Wonderful job of describing a horrible book.

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  3. Thank you for doing an easy job well. Not many would say what is so patently obvious.. That the people who wrote and endorse this as "the story of autism" are in reality as delusional as the crackpot idea that they know better than the people who actually ARE autistic.. From the minute i realized that no trained professional was going to help my child but me even tho i was not sure what was wrong..and that then i decided to let the child take the lead to show me how to best help..until now and ever since the dx that would finally put a name to what we faced together..i saw a brilliant quick delightful force that was not only and always autistic..but that the character and perception of my child was often not only different than mine or ours(nt)..but in many ways better. That just because tge world was ordered in a certain way does not mean its the only way.. And from that view i came quickly to see why any person found on the autism spectrum would never think to be "cured"..that there is nothing to cure. That perhaps in many ways we whom are neuro typical might be the ones with disordered thinking. Therefore this book speaks only of sadness and disturbingly self centered thinking that should be examined for its defects. So for all of us.. Thank you!

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  4. Alex Plank is in NeuroTribes too. . .

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  5. The context of this book is so horribly hateful. If scientists truely believe in curing Autism so why isn't there one? We just need to stop blaming and shaming parents who have a child with Autism or what so ever disability's out there. This is so unfair. Look at the truth and fix your mistake. The disability's are not the mistake you are.

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