This
ableist article titled “Can We Please Stop
Whitewashing Autism” (CN: Ableism, functioning labels, autism as
tragedy narrative) is about NeuroTribes.
It’s
not, as the title would suggest, about the real erasure autistic PoC
face. The author is more concerned that a journalist is trying to
treat autism with more respect.
It’s
also by someone who has not even *read NeuroTribes with an open mind*. The
author of the article has also blocked the author of NeuroTribes from
a different thread.
Q1:
What is your reaction to the backlash articles against NeuroTribes,
in general?
M.o.
Kelter:
Neurotribes
covers so much territory that there is room for constructive
criticism. And I think Steve Silberman has been more than willing to
listen to constructive criticism. People have discussed stories and
histories that they feel could been focused on more and I think all
of that can be part of a healthy discussion. So, I would separate
fair criticism from what I see as distorted, unfair criticism. For
example, when people say “Neurotribes presents autism as this
wonderful thing”...it means they didn't read the book. Neurotribes
describes a huge, diverse range of autistic experiences. From what I
can tell, most of the backlash falls into this second category, where
folks are attacking the book for claims it never makes.
Shannon
Rosa: Eye
rolling. I've yet to see a statement from an anti-neurodiversity
perspective that can't be countered by direct quotes from the book.
I
think people are upset by the success of Silberman's campaign
for accepting and understanding autistic people like my son and my
friends, and his rejection of the usual "brave" horror show
accounts. Heavens forbid anyone attempt to derail the decades of
abuse and stigma suffered by autistic people (and their families)!
Chavisory:
I find it pretty predictable, honestly.
Steve's research is groundbreaking, but people who are really, really
sunk in the line of reasoning that autism is a terrible affliction
were always going to find it all too easy to dismiss his findings as
biased or wishy-washy...
Q2:
So do you think the backlash articles are absolutely strawmanning the
issue that he didn't include accounts of what “real autism” is
like? In quotes, because all autistic people... are autistic.
Mo.
Kelter: Definitely.
In most of the cases I've seen, it's a willful, intentional straw man
fallacy. The real fear that's motivating some of the backlash is that
people might read Neurotribes and start thinking of autistics as
human beings. Certain camps just don't want this. But their
criticism, that “real” autism is left out: it ignores the actual
content of the book. He includes a variety of experiences.
Shannon
Rosa: : Well,
yes. Those accusations are B.S.-- the very first autistic person
mentioned in the book is a girl with "severe" autism,
and she's far from the only high-support autistic person
featured. Full disclosure: my family's story is included, and I
find it perplexing that anyone who read about my son would
question the reality of his autism.
Chavisory:
Yes,
for the most part. He wrote extensively about the first people
diagnosed with autism in the US--Kanner's patients are literally the
prototypical cases of "Kanner autism," it's just that
they've been grossly misrepresented by history and frankly, by people
with their own stakes in believing autism to be the horrific
affliction they believe it to be. He profiled people like Leo Rosa,
who as his mother reiterates pretty much constantly, is minimally
verbal, has a lot of emotional regulation issues, and requires 24/7
one on one support. Even to take an obvious genius like Henry
Cavendish, I hope that it was very clear from Steve's descriptions of
his life just how debilitated he was by it--like, he had a second
staircase built in his house just to be able to doubly avoid being
seen by anyone else ever? That's an *extreme* level of exposure
anxiety and aversion to human contact, and obviously it had a
profound effect on how Cavendish had to live his life.
Q3:
How would you address claims that he's using neurodiversity as a tool
to make things all glossy? Is that also a strawman argument?
M.o.
Kelter: It's
an argument that cherry picks a very, very small portion of the book
and then blows it out of proportion. The book includes a few profiles
of autistic savants. So...is this too glossy? No. What's happening
here is that people are shooting the messenger. Silberman is covering
a huge swathe of history...and until recently? Very, very few
autistic experiences were recorded. One reason Neurotribes includes a
few autistic savants is because those were the only stories that were
recorded for a long time. Autistics with communication challenges, or
with greater self-care challenges, and so on...they were
institutionalized, often killed, always hidden away. Neurotribes is
not concealing autistic stories. Society did that. It still does
that. What the book tries to do is look at that history...the history
of how autistics were defined and treated and prevented from being
part of the society around them. It's a messenger about autism
history, not the mechanism suppressing that history. I think some
people are just very reluctant to see the ugly truth about why
autistic stories were completely absent for so long.
Shannon
Rosa: I
would say those claims are being delivered by people who are
preemptively prejudiced, don't understand neurodiversity at all,
hate-read the book, and/or somehow failed to notice anything but
the "strange gift" section of this passage:
"Whatever
autism is, it is not a unique product of modern civilization. It is a
strange gift from our deep past, passed down through millions of
years of evolution.Neurodiversity advocates propose that instead of
viewing this gift as an error of nature—a puzzle to be solved and
eliminated with techniques like prenatal testing and selective
abortion—society should regard it as a valuable part of humanity’s
genetic legacy, while ameliorating the aspects of autism that can be
profoundly disabling without adequate forms of support."
Chavisory:
Mostly
I think the people making that claim either have never understood
neurodiversity or are deliberately misrepresenting it. More the
former than the latter...I just mainly think that a ton of these
people *cannot* get their heads around the concept that many human
abilities and inabilities are two sides of the same coin, or that
autism, which *looks* only like a severe set of inabilities to them,
has another side that might not be apparent to someone determined not
to see it.
Q4:
What do you think the message of NeuroTribes is? What it's trying to
say about autism? How do you think it does with encompassing a
variety of autistic people?
M.o.
Kelter:
For
me, the message is: autism has always been here. We've always been
afraid of it, tried to hide it. And it's time to see autistics as
human beings, not as “diseased”, “tragic” or part of an
“epidemic”. I wouldn't even say most of the book has a “message”,
since it's not about Silberman's views...it is primarily a history of
how autism was researched and defined over many decades...and that
history speaks for itself, in a lot of ways. Someone can sincerely
disagree with Silberman's personal take on any given issue...but you
can't disagree with facts. And most of the book is a historical
overview, not an opinion piece.
Shannon
Rosa: I
doubt Silberman would phrase it quite this way, but in my opinion
NeuroTribes is a history of how an entire innocent population has
historically and systematically been [expletive] over, maltreated, and ostracized, how
we can stop doing that, and how we can start treating autistic
people like human beings, whatever their abilities or needs.
Chavisory:
I think
NeuroTribes primarily succeeds at relating how the story of autism,
and thus our perceptions of autistic people, has been so distorted by
history, by bad research, by self-serving researchers, by the ease
with which various popular self-appointed experts have been able to
use autistic people as a projection screen for whatever their own
fears and obsessions were. To say that it establishes that autism has
been historically misrepresented is an understatement.
I
do wish that it had represented a wider variety of autistic
people...but not in the ways that most people are complaining about.
And I do understand that Silberman was working under editorial
constraints that probably made inclusion of everything *he* wanted to
include difficult.
But
I would've liked to have seen more representation of what was
happening to undiagnosed autistic people prior to the 1990's who
*weren't* in the sciences or tech sector. Rural autistic people,
autistic people in the arts and humanities, autistic people who were
misdiagnosed and/or institutionalized etc., because the expanded
diagnostic criteria actually included *them* for the first time as
well, autistic people of color....
But
like, there's just not a ton of material openly available about these
people, because of the distortion that Silberman is writing about.
Q5:
What are some things you hope for moving forward from NeuroTribes?
M.o.
Kelter: For
too long, the window of “what can we discuss when we discuss
autism?” has been skewed in this very negative, inaccurate
direction. People were focused on conspiracy theories and vaccine
nonsense, for example. My hope is that Neurotribes pushes that window
in a new, better direction. Hopefully we can talk about, in a bigger
public sphere, autistic lives and experiences (and this means the
full range of autistic experiences, with no stories left out or
suppressed), so that people are learning to see these issues in a
more constructive, informed way.
Shannon
Rosa: I
hope it inspires well-funded philanthropists to work on items to
improve the day-to-day quality of life for autistic people,
things like affordable alternative communication strategies and
equipment, or gear for coping with sensory issues (e.g., inexpensive
noise canceling headphones in every classroom).
I
hope it inspires more autism professionals to apply
neurodiversity principles to their work.
I
hope it allows parents to love their autistic kids more freely.
And
I hope it helps autistic people feel empowered, vindicated,
rightfully angry, visible, and connected.
Chavisory:
I
would really hope that more and more of the general reading public
would start looking towards autistic people to understand our stories
and who we are. I hope that NeuroTribes will make people who are
still learning, or don't know much at all about autism, or still
questioning what they think, feel compelled to weigh accounts by
autistic people against the professional misconceptions. Like,
NeuroTribes will probably be the first thing that some people ever
read about autism, and that makes me really happy to think about.
I
hope that more people will think seriously about whether, given the
known contributions of autistic people to human culture, whether
erasing us, and our cognitive diversity, from the future is really
what we should be striving to do.