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.“
