Finally, a book that confirms that my autism is a source of income to the ‘professionals’ I have allowed to claim to be a support, when I didn’t know better. When I listened to the professionals and exposed my autistic children to ABA, I had no idea that the next recommendation would be psychiatric medications. A decade later, I wondered how the US policies are structured around profiting from autism.
Here is a video presentation by Alicia A. Broderick, Ph.D.
Author of the book “The Autism Industrial Complex: How Branding, Marketing, and Capital Investment Turned Autism into Big Business” now available on Amazon
Autism—a concept that barely existed 75 years ago—currently feeds multiple, multi-billion-dollar-a-year, global industries. Dr. Alicia A. Broderick analyzes how we got from the 11 children first identified by Leo Kanner in 1943 as “autistic” to the billion-dollar autism industries that are booming today. Broderick argues that, within the Autism Industrial Complex (AIC), almost anyone can capitalize on—and profit from—autism, and she also shows us how. The AIC has not always been there: it was built, conjured, created, manufactured, produced, not out of thin air, but out of ideologies, rhetorics, branding, business plans, policy lobbying, media saturation, capital investment, and the bodies of autistic people. Broderick excavates the 75-year-long history of the concept of autism, and shows us how the AIC—and indeed, autism today—can only be understood within capitalism itself.
Alicia A. Broderick is a Professor of Education at Montclair State University. She is a Disability Studies (DS) scholar and a scholar of Critical Autism Studies (CAS). For the past two decades, she has published critical scholarship on autism, deploying a variety of interdisciplinary conceptual frameworks, including critical discourse analysis, rhetoric, cultural studies, and historically-situated analyses of ideology, metaphor and narrative. Her present analysis synthesizes and reframes much of her extant work by deploying the overarching epistemological and ontological lens of neoliberal capitalism in analyzing the shifting meanings of autism within capitalism over the past 75 years.
– Okay, hi everyone.
So I’m Jen Schonger from the New Jersey
Autism Center of Excellence, the NJACE,
which is funded in part by the New Jersey Governor’s Council
and the New Jersey Department of Health.
We’re here today with Professor Alicia A. Broderick,
from Montclair State University, and also our Director,
Professor Liz Torres has joined us
since this is such an important issue.
So thank you, both of you.
I have a couple of notes.
I know that we may have some people who are joining us
for the first time so if you’re new here,
be sure to subscribe to the YouTube page,
because it will allow you to ask questions in the chat
and it’ll also help you to get reminders for other events.
We’re also trying out a new feed today
that will allow us to hopefully share
some of the questions right onto the screen
and we’ll have that link in the chat as well,
but you can use either.
We just can’t post questions on the screen
if it’s not in that separate link.
And today Dr. Broderick is going to present,
and then we will have Q&A with Dr. Torres as well.
And we do have live captionings enabled right now.
They’ll be updated in a couple of days so that they
are ADA compliant and as precise as possible.
And today we are actually giving out
e-copies of Dr. Broderick’s book,
we have 30 copies available.
It’s gonna be first come first serve.
So if you would like to have the chance to get a copy,
we’ll have a survey link that we’re gonna put into the chat.
And again, it’ll be first come, first serve.
As always, we love knowing more about you.
We would love to hear where you’re watching from.
So if you’re comfortable, please feel free to share.
With all of that said, I would love to introduce,
Dr. Alicia A. Broderick, who is a Professor of Education
at Montclair State University.
She’s a disability studies scholar
and a scholar of critical autism studies.
In the past two decades, she’s published
critical scholarship on autism, deploying a variety
of interdisciplinary conceptual frameworks,
including critical discourse analysis,
rhetoric, cultural studies and historically
situated analysis of ideology, metaphor and narrative.
Her present analysis synthesizes and reframes
much of her excellent by deploying the overarching
epistemological and ontological lens
of neoliberal capitalism in analyzing the shifting meanings
of autism within capitalism over the past 75 years.
And just to say again to all of you watching, as you know,
this is the first day of Autism Acceptance Month,
Dr. Broderick is going to be telling us why
that matters to all of you and what you need to understand.
So welcome Dr. Broderick and thanks
for being here, Dr. Torres as well.
– Thank you so much.
– Thank you, Jen and thank you Liz,
and to everyone at the NJACE.
And I apologize for giving you the bio that
had a pretty heavy vocabulary loaded in.
I promised that I crafted this presentation
to be somewhat more accessible and conversational,
so that we can have a good chat about what’s going on.
So the title of my talk today,
as Jen just said, is Autism Awareness Counterprogramming,
Raising Public Awareness of the Autism
Industrial Complex and the icon there is the copy
of my recent book of the same title
that I’m gonna be drawing on in our conversation today.
Acknowledgements, I just wanna begin by saying
the first two authors of my book are actually co-authored
with my dear friend and colleague Robin Roscigno.
So some of the conceptual work around
the Autism Industrial Complex
is work that we develop together.
I wanna acknowledge that and thank Robin very much
for the generative and ongoing collaboration.
Also thanks to my publisher Myers Ed Press
and Stylus Publishing and full disclosure,
I also wanna just let everyone know
that Dr. Torres, Liz Torres from NJACE did read
an advanced copy of the text for me,
very, very generously and offered a generous endorsement
of it which is on the back cover.
So thank you for that Liz and Jen and everybody else,
Joe, at NJACE for the opportunity to share it today.
But I wanted to give that disclosure.
Okay, so first why counterprogramming, right?
Is this talk titled Autism Awareness Counterprogramming?
Autism Awareness Month has been observed in the US
in the month of April for more than 50 years now,
but as many of you probably are already well aware
about 15 years ago, autism awareness in the US
took on a very different tenor.
It became much more slickly produced
in terms of media, in terms of marketing and PR,
and it became much more ominous as well.
Also autism awareness began globalizing.
The awareness agenda was globalizing via the media platform
that we’re gonna talk about in a few minutes,
but also specifically and particularly was,
was launched to a global platform through
the introduction of a UN resolution establishing
World Autism Awareness Day on April 2 annually,
which that’s been in place since 2008,
was the first observance of that.
So again, to come back to the counterprogramming,
for all of these years, we’ve mostly had,
“Autism awareness initiatives, autism awareness activities.”
And particularly in the last 15 years or so,
most of those initiatives have appeared to aim
to be raising awareness of signs or symptoms of autism,
as a disease or as a disorder, as a problem.
Most of these awareness activities have been framed
within what’s called the Medical Model of Disability, right?
A medical conceptualization of autism.
Most of these initiatives have really,
really perpetuated stigmatizing stereotypes
and in many cases made them actually worse.
Typically speaking most of these awareness activities,
not only for the past 15 years, but for the past 50 odd,
have generally reflected almost
entirely allistic perspectives,
that is non-autistic perspectives.
And because of that, they have oftentimes
additionally been ableist as well.
So within these traditional
autism awareness conceptualizations,
the problem, if you will, that people are endeavoring
to raise awareness of is autism itself.
Autism is the problem that we’re
trying to raise awareness of.
So most autism acceptance alternative activities aim
to raise acceptance and valuing of autistic experience,
autistic identity, autistic pride,
draw primarily on honest social model of disability
or a cultural identity model even of disability,
mostly set out to sort of challenge
or refute stigmatizing stereotypes,
really, really seek to foreground and highlight
autistic perspectives and do explicitly anti-ableist work.
And within many of these acceptance initiatives,
the problem is ableism itself and also the problem
is simply that people do not appreciate value
and understand autistic perspectives.
This presentation is neither of those things, okay?
So if you came expecting either an autism awareness talk
or an autism acceptance talk, I’m very sorry,
I’m going to disappoint you and I do hope you’ll stay
and maybe you’ll find some value in what I do anyway.
So this April, it’s April 1, today, right?
Happy spring, happy April, this April,
you are going to once again see for the next month,
the now familiar icons and the ritualized
observances that have marked April
as Autism Awareness Month for decades now.
You’ve probably already seen the puzzle pieces,
the Light It Up Blue campaign,
the now rainbow-themed branding of the ribbons
and the puzzle pieces and the t-shirts and all the kitsch,
the bracelets, all of that, but perhaps most importantly,
and really most ubiquitously you’ve probably
also seen the fundraising campaigns.
You might be asked to take the pledge.
You might be asked to celebrate differences.
Maybe even a few people are still asking you
to learn the signs, but here’s what you less likely
to see or to hear about this month and I believe
it’s one of the most important things that we need
to be talking about and raising our critical awareness of,
and that is the industrial-scale
commodification of autistic people.
And how many of these initiatives,
whether they be awareness or even acceptance in some cases
through are actually part of that money making process.
So what’s commodification, I’m gonna try to explain
my 50 cent vocabulary words as I go,
as my grandmother would’ve said.
Commodification is the process by which ideas or objects,
or even in some cases, people in this case,
people are turned into or transformed
into things of some economic value, right?
So things that can be appropriated
to buy or sell or trade or consume.
Things that can be used to market or to brand things
that people are already buying
or selling or trading or consuming.
Commodities are the things that animate industries.
So this is Walmart capitalizing
on the commodification of autism.
This is not the commodification of autism per se,
but this is Walmart a little bit raking in on it,
because if you’ve got an autism advocate doll
with her noise reduction headphones
and her puzzle piece bracelet and her fidget spinner,
probably you can charge a little bit more
for that doll than for a non-autistic doll
that doesn’t have the paraphernalia with it, right?
So there’s a money making opportunity on autism.
And while Autism Awareness Month has been observed
and celebrated for, as I said, more than 50 years,
the last decade and a half’s awareness initiatives
and their fear mongering rhetoric,
you’ve heard it all before autism is an enemy.
It’s an epidemic, it’s coming for your children.
All of that was masterfully crafted, I argue,
to very purposefully to generate
a market of willing and eager consumers.
And by that I mean consumers
of autism intervention products.
I don’t call that raising awareness,
I call that manufacturing a market.
Since at least 2011, autistic communities have decried
these events every April and autistic people
have instead advocated for accepting and valuing
of autistic experience and for nurturing
and supporting autistic agency,
autistic liberation and autistic pride.
And as of last year by 2021, many though still not all,
of the largest autism advocacy organizations
had jettisoned their autism awareness activities
and they rebranded them to get on board
with April as Autism Acceptance Month.
Many of those organizations are also
quite busily appropriating the language
and the iconography of neurodiversity into their own PR,
their own logos and their own brands.
For example, you’re all familiar with the rebrand,
the Autism Speaks puzzle piece rebrand,
it’s now rainbow to represent neurodiversity, right?
This is the National Autistic Society in the UK.
That is their symbol, their icon is one half
of the neurodiversity infinity symbol, okay?
So we can see the rebrand, we can see the appropriation.
But before we celebrate this apparent
embracing of autism acceptance, right,
before we celebrate this as a victory for autistic activism.
Let’s ask why or at least let’s ask why now?
Why this kinder, gentler shift to autism acceptance,
to a sudden valuing of neurodiversity, when, you know,
10 years ago, they were trying to eradicate it, right?
And perhaps, perhaps, as a society,
we have genuinely experienced growth.
That’s almost certainly true to a certain extent,
but I do not believe that to be the only reason.
The other answer is that it now actually benefits
the autism industries to rebrand and it is a rebrand, right?
And to some extent, the new brand of valuing autistic people
that branding right, serves at least in part,
I argue to obscure the value of autistic people
as commodities for the autism industries.
It’s about the money, it has always been,
and it always will be about the money.
So within autism commerce, autistic people,
including very young children of 12, 18, 24 months of age
have become the raw materials of the very profitable,
booming and ever diversifying autism industries.
The biggies include the applied behavior analysis
or ABA industry about to be booming,
the autism pharmaceutical industry
and there are multiple others, right?
And the central engine driving the growth
of these multi-billion dollar year industries,
as with all other industries, of course,
is their vast potential for profit.
So every autistic two-year old sets in motion
a chain of commercial transactions, right?
We have consultations, evaluations, diagnoses,
there are infinite varieties of therapies
and supports and services and counseling,
and other kinds of interventions.
There are pharmaceuticals, even research dollars.
In some cases, even things like
specialized litigation firms, right?
The minute a child is diagnosed they become transformed
into a commodity of the autism industries.
And that child represents nearly
boundless potential for profit extraction.
So I argue that we don’t just need autism acceptance.
Yes, we do, we need autistic, not only acceptance,
valuing liberation, pride, right?
We need all of that, but we continue to need,
I argue, autism awareness.
We continue to need critical autism awareness,
not awareness of signs, symptoms, that sort of thing.
We need to develop critical awareness
so as disrupt the industrial, excuse me,
the industrial scale commodification of autistic people.
So the question then is how do we do that, right?
What else do we need to raise critical awareness of,
how do we disrupt the commodification?
Well, I argue that we need concentrated awareness
of autism within capitalism, right?
We cannot possibly understand what autism is, what it means,
unless we understand what autism does
and everything that it does, it does within capitalism.
And frankly, it always has, okay.
And this is the part where I can’t actually see you,
but I can hear you thinking, what?
What is wrong with that woman?
Autism has nothing to do with capitalism,
maybe I, you know, have something else
I can do instead of watching this webinar.
But this is the point where I get to argue that autism has
everything to do with capitalism, please just hear me out.
So autism is a concept that barely existed 75 years ago,
and it currently feeds multiple, multi-billion dollar a year
global and globalizing industries.
So the question I asked was, how is this possible, right?
How did we get here, how did we get from the 11,
11 children first identified by Leo Kanner
in 1943 as autistic, how do we go from 11 children,
to the billion dollar global,
autism industries that are booming today?
This is something that I was curious about, right?
And no, I know what you’re thinking, I can hear you.
The answer is not because of the autism epidemic.
At least it’s not exactly because of the autism epidemic,
more on that later, put a pin in it,
we will come back to it.
We got here, I argue and Robin along with me,
because of the Autism Industrial Complex
or what we call the AIC.
So why this language, why the term terminology,
why an industrial complex?
Well, obviously it’s an extrapolation
of the Military Industrial Complex,
which Eisenhower offered us the idea in 1961.
So why did Dwight Eisenhower warn the nation against
the rising Military Industrial Complex at that time?
A couple of things, number one,
he feared the dangerous potential for abuse of power.
Ideological monopoly combined with commercial profiteering
is very likely to lead to abusive power.
He warned us against that.
He also feared that decisions about military spending
would be driven not by the interest of national security,
but rather by the interests of the high potential
for private and corporate profit, he warned us against that.
He also feared that any human costs
of military proliferation would regarded as insignificant
in the face of the industry’s enormous profitability.
He warned us about that as well, he was rather appreciative.
So the analogous dangers of the Autism Industrial Complex,
we assert are pretty much exactly the same dangers.
We assert that there are significant existing abuses
of power right now, going on today,
in association with ideological monopoly
and commercial profiteering within the AIC.
We also assert that both public policy
and individual decision making in relation
to autism and autistic people are currently driven
by and law are not necessarily by the interests
of autistic people but are driven rather
by the interests of the private
and corporate corporate profit potential within the AIC.
And lastly, in alignment with Eisenhower,
we also argue that the human cost
of the proliferation of the AIC,
which are almost entirely born by autistic people,
are widely disregarded as insignificant in the face
of the industry’s enormous profitability.
So this concept of an industrial complex,
the concept of the AIC allows us to understand
how the cultural politics of autism and the economy
of autism co-create one another other, okay?
It also allows us to document the ways
that the cultural production of autism as a social problem
and also then the consumption of the idea of autism
as a social problem has always been co-produced
or consumption with a cultural logic of intervention
as the natural response to the problem of autism.
Later, the cultural logic of prevention would come into it.
And lastly, the concept of the AIC allows us to understand
how both the cultural politics and the economy,
the political economy of autism,
have collectively for over 70 years now to generate,
to justify and to perpetuate the extraction
of profit from autism and to be clear,
that means from autistic people within the US’s,
advanced neoliberal capitalist economy, okay?
So to return to the Military Industrial Complex,
the Military Industrial Complex
is not just the businesses, right?
It’s not just the corporations
that profit within the military industry.
So the Military Industrial Complex is not just
Boeing and Halliburton and Blackwater
and all of the folks who have
the very high dollar military contracts, right?
The Military Industrial Complex rather is the set of ideas
that we as a nation consumed for decades,
that made it feel natural and normal and inevitable
and to a certain extent, invisible, that military spending
should continue to proliferate, right?
So you no longer actually have to make much
of a case for military spending.
In fact, you actually have to work pretty hard
to make a case to reduce military spending.
It’s just how we do things here in the US.
And that is the industrial complex, right?
The set of ideas, likewise, the Autism Industrial Complex,
is actually not all those businesses
that make money from autism and make business,
excuse me, make money from autistic people, right?
So all of the therapy consultancies, all those LLCs, right?
The service providers, the specialized legal practices,
the research institutes even,
the people who charge more money for tagless t-shirts
when they get to market them as autism friendly, right?
The people with the dolls, all of that,
they make up the autism industries, okay?
That’s the commercial sector,
those are the autism industries,
but the autism industries only exist and thrive, excuse me,
because of the AIC, the Autism Industrial Complex.
So the AIC’s foundational products are not the dolls,
they’re not even the therapies or the services.
They’re not the fidget spinners, right?
The foundational products of the AIC
are fundamentally ideas.
The AIC has been producing ideas
for our consumption for decades now.
Idea number one is that autism is a social problem.
Take your pick, metaphor of the month, right?
Disease, enemy, child abductor, alien, epidemic, contagious,
financial tsunami, albatross, caravan, take your pick.
That’s problem number one, or excuse me, idea number one.
And secondly, the narrative cultural logic
of intervention and later also of prevention, right?
And the establishment and widespread consumption
of the idea that autism is a problem,
both rationalizes and justifies,
our concomitant acceptance of the second, right?
The two go hand in hand, it’s kind of a two for one deal.
When you establish autism as a problem,
you then set up a narrative logic that of course,
you must intervene to ameliorate that problem, right?
And these two ideas, these two sets of ideas,
have been co-produced, co-constructed, co-constituted
and importantly have been commodified
and consumed for decades now.
So the AIC primarily produces and distributes ideas
for consumption and we have been,
all of us, consuming them for decades.
It doesn’t matter if you are not a consumer
of autism products or autism services,
you may not yourself have anything
to do with actual autism commerce.
And yet, because of mass media,
you have been consuming the ideas that,
A, autism is a problem and B,
intervention is natural and necessary, just and best,
simply by living within this culture
and that’s how the AIC operates.
Every person is a potential latent consumer
and if we wanna bring you to the point
of active consumption within the autism industry,
should that become necessary for you?
Then we need to ensure that you’ve already consumed
and accepted the foundational ideas that autism
is a problem and intervention is necessary, okay?
So the AIC manufacturers its foundational products through
the systematic deployment and the really shameless,
just shameless, rhetorical manipulation
of people’s cultural hopes and of their cultural fears,
through really, really skillfully deploying
both metaphor and narrative, right?
There’s a lot of media savvy in the
AIC manufacturing of its products.
And then the AIC distributes those rhetorical
ideological foundational products, those ideas, right?
Through a wide-ranging, sophisticated, multi-platform,
ubiquitous and global media campaign.
So I argue in the book that the AIC deploys
three main sort of sets of rhetorics, right?
One is the politics of hope, mostly pulling
on parents’ heartstrings in terms of hope and by parents,
I mean, primarily non-autistic parents of autistic children.
So deploying the politics of hope,
hope for recovery, hope for recovery from autism.
It’s a fundamentally aimless hope but it is powerful
for a lot of people nonetheless and hope for a future
with no autism or less autism in it,
which is of course we have to recognize a future
with no or at least fewer autistic people in it.
So the politics of hope have been
deployed for several decades now.
Also the politics of fear, the fear of autism itself.
Autism as an enemy or alien or child abductor,
but simply also a general sort of background,
a low level anxiety and fear,
for one’s child’s future, right?
And in the production of ideas that get circulated
through the mass media, the AIC produces
and distributes ideas like autism is bad,
autism is tragic, autism is catastrophic.
Autism is terrifying, autism is coming for your children.
And by that mostly they mean your presumed
to be normal children, your non-autistic children.
Autistic children have no future,
autistic adults are likely to be,
or even should be perhaps institutionalized.
Autistic people can’t possibly lead happy
or normal or independent lives.
And again, all of these ideas are wrapped
into constructing autism fundamentally, as a social problem.
So the economic architecture, cultural, political,
economic architecture of the AIC also produces
for our widespread consumption,
that second foundational product I talked about,
which is the narrative logic that not only
is autism dangerous and threatening and generally bad,
but also that it therefore necessitates intervention,
and here’s the kicker, some forms of intervention are better
and notably better investments than others, okay?
So it also produces ideas such as,
and we consume ideas such as intervention is our only hope.
With the proper intervention your child
might be recovered to normalcy.
Only one type of intervention is scientific,
only one type of intervention is evidence-based.
Only one intervention is cost effective.
All other interventions are hoaxes or fraudulent
or pseudoscientific or anti-scientific
or ineffective or nonsense, or what have you.
Autism should be eradicated.
Autism should be prevented if possible.
The world would be a better place
if there were fewer autistic people in it.
Autistic people are an economic burden on our society right?
All of these kinds of narratives
come together to convey the narrative idea,
that intervention is the natural, normal, appropriate,
cultural response to the problem
of autism and therefore autistic people.
So if you remember, I said, there were three,
main rhetorics deployed by the AIC, right?
One being the politics of hope,
the other being the politics of fear, but also,
and notably, there’s also what I call the politics of truth,
which is rhetorically deployed through the discourse
and the rhetoric of science, which by the way,
is a different thing from science itself.
The rhetoric of science, the discourse of science
is not necessarily the same thing as science, okay?
So science is a suite of methods for systematically studying
the physical and actually vastly more difficult task
of studying the social world, okay?
It’s a set of methods of inquiry,
methods of systematic inquiry, that is science.
However, science is also additionally, a discourse.
It’s a vocabulary, it’s a set of language rhetoric.
Science, as of discourse, as rhetoric,
lends legitimacy, it lends weight.
It lends authority, it lends credibility.
The discourse of science is the vocabulary of truth claims,
so it also functions as the politics of truth, okay?
So that’s science as a discourse.
And then there’s what’s called scientism,
which again is a different thing.
So Haack describes scientism as follows, she says,
“Scientism is a kind of over enthusiastic
“and uncritically deferential attitude towards science.
“An inability to see or an unwillingness
“to acknowledge its fallibilities,
“its limitations and even its potential dangers.”
So the second passage is a passage quoted
from my book because I go one further,
beyond her definition of scientism.
I go one further and I argue that sometimes,
scientism stems not merely from an inability
or an unwillingness to acknowledge the limitations
and the potential dangers of scientific processes.
I argue rather sometimes this stems
from a strategic decision to actively deploy
the discourse of science to establish, gain,
or consolidate economic or political power.
And I argue that this particularly is likely to happen
when it’s in the context of seeking to shape public opinion
and or to garner support for one’s position
on a political or an ideological or a policy
or a commercial issue or venture.
So Haack gives us these, how do we know scientism
when we hear it, how do we know it when we see it, right?
She gives us these six signs of scientism
that I’m gonna run through real quick.
She says, we know it might be scientism
when the rhetoric, when the discourse is using the words,
science, scientifically, scientific, scientist,
accessibly and horrifically, just as generic terms
of epistemic praise, generic terms of value, right?
We know it might be scientism when we see
a lot of adopting of the manners, the trappings,
the technical terminology of the sciences, regardless,
of whether it’s actually useful to the context or not.
We also tend to see within scientism
a real preoccupation with demarcation, right?
A real preoccupation with us and them,
with drawing a very sharp dividing line
between what is genuine or real science
and so called pseudo-scientific imposters, right?
There’s a lot of attention and discussion focused
on who’s on which side of that line.
A corresponding preoccupation with identifying
the often singular scientific method,
even though we know that there are many,
many, multiple scientific methods, plural.
Scientism often looks to the sciences exclusively
for answers to question that are actually
beyond the scope of science or at least,
that are only partially addressed by science.
Most complex social issues should
be informed by scientific understanding,
but science alone cannot or does not tell us
how to create just public policy.
So for example, we may understand the science behind
the epidemic spread of COVID, for example.
However, in order to create public policy,
we have to take into account things like,
well, who is more likely or less likely
to have access to vaccines, yada, yada,
there’s a lot of cultural, social, economic
and political matters that need to be taken
into consideration in coming to a policy position.
And lastly, scientism has a tendency to spend
a lot of time denying or even denigrating
the legitimacy or the worth of any other kinds
of inquiry besides the scientific
or even besides tiny, little, narrow slivers
of the scientific method, right?
One of these scientific methods.
Does any of this sound familiar,
in the context of autism politics?
I’m assuming all of this sounds very familiar to you.
These data are drawn from a wide range of sources.
They’re are listed in my book if you’re interested,
but these data were called in the early to mid 1990s,
from public sources describing ABA as scientific.
This is just a little bit of the vocabulary, right?
ABA appeals to reason, factual information,
science-based, time tested, objective data,
highest possible degree of reliability.
Well founded, objectively validated.
A Corpus of knowledge, held together empirically.
Voices of reason in the wilderness.
The light of scientific objectivity, professional scrutiny,
peer review, direct objective observation,
and measurement of phenomena.
Standing the test of time, repeated demonstrations,
called replications, accurate information,
evidence, discipline science, rigorous methodology.
Now you’ve probably all heard all of this
in many, many, many, many more similar truth claims
about ABA as being scientific.
I believe yesterday afternoon was the most recent time
I personally heard the phrase evidence-based practices
deployed against me as a power play.
It happens nearly daily to those of us that are involved
in the autism politics, right?
So that’s the deployment of scientism as a discourse,
as a rhetoric to lend legitimacy to a particular,
I’m gonna say, commercial venture, right?
The flip side of that, this is the language
that that same discourse community deploys describing other,
what they would call non-scientific autism interventions.
Again, all of these data are pulled
from a variety of public sources,
from the early to the mid-90s.
Appeal to emotions, opinion.
Other autism interventions are based in opinion.
Truth is a relative term.
These people have the gift of the gab.
It’s just received wisdom.
It’s pseudoscience, it’s anti-science.
It’s misinformation, it’s false expertise.
They’re engaged in ferocious ideological warfare.
These are unsupported claims.
People make claims about curative powers,
powers to heal, these are new age gurus.
This is charlatanism, this is quackery.
I’m a little sensitive to those because I’ve been called
a charlatan and a quack by some folks as well.
Nonsense, scandal, messiahs, moon dust elixir,
magic bullets, personal beliefs, social movements,
advozealots, faith, unproven therapies, ideologues, right?
So when you levy these kind of claims against people
who are exploring and or advocating for,
wither other kinds of autism interventions,
and or potentially the absence
of intervention as a driving narrative,
there’s one question that you should be asking yourself,
when you’re bombarded with rhetoric like this,
over and over and over again for decades,
there is one and only one question you need to be asking,
and I hope you all know what this is.
So what are they selling you, right?
This is a very, very simple, very tried and true playbook.
It’s a simple marketing playbook.
Think back to the last time you were in front
of a television and you saw an infomercial, right?
If you saw one of those, last night I saw one
of those infomercials for, you know, the pans that you know,
all the eggs always stick to and aren’t you tired of your,
you know, pans that your eggs burn
and you stick and you see this poor person
trying to scrape eggs out of the pan,
and it’s terrible and it’s awful.
And it’s in black and white, right?
And the person looks just desperately upset
and this is terrible and they take the pan
and they throw it in the garbage because it’s no good
and this person has no pans.
And then we have these suddenly beautifully lit,
brightly colored, lovely purple and orange and blue,
and you know, beautiful pans that don’t stick at all.
And, you know, they’re for this wonderful price
and you would expect to pay this much money for it,
but we’re gonna give you a really good deal
and you only have to pay that much money for it, right?
So you set up, isn’t this terrible?
And then wouldn’t you like to do
something that would be wonderful.
We can give you exactly what you want.
We can sell you the hope.
We can sell you the hope and we can do it for a decent price
and we have legitimacy and four out of five people surveyed
loved, yada, what are they selling you?
Okay, to return to the AIC, autism commodified, check.
That’s done, they took care of that within,
they spent nearly 40 years commodifying autism, check.
That’s done, we are actively consuming it.
The unquestioning widespread consumption
of the cultural logic of intervention, check.
Also done, taking care of, the AIC took care of it.
So first came systems of ideas, ideology,
and then came consistent, pervasive,
repeated over and over and over again,
rhetorical deployment of those ideas.
All that’s in place, perhaps it’s time now to scale up.
So Heilker and Yergeau say that,
“Autism is a profoundly rhetorical phenomenon.”
And I would agree with that claim, it absolutely is.
However, I spent a number of years analyzing
the rhetorics of autism, just looking mostly,
from within the discipline of rhetoric.
However, I’ve now sort expanded a layer beyond rhetoric
because when rhetoric is deployed
in service of building a market,
when rhetoric is deployed in service
of manufacturing consumers, when it’s deployed
to mass produced consumer confidence in whatever it is
you happen to be selling and thereby,
working to corner that market,
we reach the point where rhetoric becomes a different thing.
Autism may be profoundly rhetorical and it is,
but rhetoric that does all of these things,
this is not just rhetoric and these are not just ideas.
This is is branding, okay?
And branding is rhetoric in service of capital.
Okay, and this is branding and marketing,
the skillful deployment of rhetoric in service of capital.
So the AIC, we feel surrounded by it, right,
but it hasn’t always been there.
It was built, it was conjured, it was created.
It was manufactured, produced, literally out of ideologies,
out of rhetorics, out of branding initiatives,
out of business plans, out of policy lobbying
and media saturation and capital investment,
and never, ever forget it was built
out of the bodies of autistic people
who form the foundational commodities of the AIC.
Nevertheless, it’s there now, it’s built.
It’s there, it exists around it and we exist within it.
And within the AIC, almost anyone can now capitalize on
and profit from autism and they are doing so in droves.
Because it’s not just autism that has been commodified.
It is also a much more perniciously,
actually autistic people.
So from this perspective, from an economic analysis
of the AIC, the central problem from this perspective
is actually less behaviorism than it is capitalism, right?
A lot of people hear this work when I talk about it,
read what I’ve written about it and think
that I’m just talking about behaviorism,
that this is purely about behaviorism and it’s actually not,
because even if you were to remove behaviorism
from the mix, as if you could right now,
you would still have autism and capitalism, right?
And so there was a historical moment when, you know,
behaviorism was ascended at just the right time.
And if things had played out a little bit differently,
you know, a few decades earlier,
we may have had Freudian psychology form the foundational
ideology behind the Autism Industrial Complex.
Three or four decades later,
we may have had brain-based neuroscience that formed
the foundational ideology behind the AIC, as it was,
we ended up with behaviorism as the founding ideology.
So our central problem here continues primarily
to be capitalism or more specifically the commodification
of autism and the commodification
of autistic people within capitalism.
So capitalism I argue is hegemonic, so what does that mean?
It means that it’s so dominant, it’s so pervasive.
We actually don’t even notice that it’s there, right?
When are economic conditions in this case,
the capitalist economic conditions that we live in,
feel so inevitable and so natural and so invisible,
we don’t even think about them, they feel natural.
We can’t imagine a time when they ever weren’t there
and therefore we probably can’t imagine a time
in which they might be different, but they’re not natural.
They were created by us, by humans.
And I argue that trying to get Americans specifically,
frankly, other folks who are outside the US
are usually more open to thinking and talking
about capitalism, somewhat critically,
but trying to get Americans specifically
to think critically about capitalism is a little bit
like trying to get a fish to think critically about water.
And it is next to impossible to get
a fish to think about land, right?
To get outside of the water that they live in
and think about the land and by the way,
you can’t get a fish to think about water either.
It’s just the universe that exists, right?
Similarly with Americans and capitalism.
So I told you we would come back to it.
I said, put pin in it, let’s revisit the concept
of the autism epidemic, shall we?
Okay, so Grinker argues that this particular diagnosis,
autism, became embedded in a financial system
that has come to depend on that diagnosis
for its sustainability and growth
and further building on Hacking,
Grinker argues that once a diagnostic label,
such as autism becomes a fulcrum around
which institutionalized financial activities coalesce,
that is once an industrial complex is formed,
that very diagnostic category provides an incentive
for manufacturing people with the diagnosis,
whose presence and need support
that financial infrastructure.
So view it through the lens of capital, right?
Rather than rhetoric, or rather than science,
or rather than anything else,
view it through the lens of capital.
What does the concept of an autism epidemic actually do?
Let’s go back to that claim.
So the metaphor, and it is a metaphor,
the metaphor epidemic accomplishes at least
two significant things, number one,
it constitutes autism as a disease
and therefore a medical matter, right?
But secondly, it generates a strong sense of threat,
a strong sense of urgency, of cultural fear.
So the question then we need to ask is why was it beneficial
and to whom to constitute autism
as disease and therefore a medical matter,
despite fairly strong activist opposition to doing so,
we need to ask what it does.
Remember I said, in order to understand autism,
we need to not only ask what it is,
but also what it does within capitalism.
So what does an epidemic, the metaphor of an epidemic do,
what does it accomplish within capitalism?
Well, the answer to that is it fairly successfully targeted
and established a revenue stream for the autism industries?
So again, revenue stream for what and for whom?
Sorry, I went ahead, in this case,
it’s a revenue stream for behavioral intervention
for autism primarily and people
who profit from that industry.
So again, I repeat, behaviorism is actually
not the central problem here because within
neoliberal capitalism in the US,
post-war, the second half of the 20th century,
given the economic and cultural trajectory of the US,
autism couldn’t possibly not have been commodified
within those economic conditions, right.
Behaviorism happened to be in the right place
at the right time and to give credit where credit is due,
it turns out behaviorists are very good capitalists
by and large, so, you know, call out for that.
So behaviorism has been the central driving vehicle
of the commodification of autism for nearly 80 years, okay?
Now, remember, let’s go back to the epidemic thing.
The AIC worked for decades to produce autism
as a social problem and also the cultural logic
of behavioral intervention in tandem with one another.
So if autism is a disease, if we cast it as an epidemic,
if that’s a disease, which is a specific kind of problem,
then the nature of that intervention should be logically,
or at least commercially connected
to that kind of problem somehow.
Spoiler, they kind of abandoned the logical part
and settled for commercially connected.
So autism as a disease, epidemic disease,
enabled the accomplishment of two things.
Number one, the co-constitution
of a particular intervention for autism.
In this case, behavioral intervention,
applied behavioral analysis, ABA,
as a medically necessary intervention for autism.
Calling autism an epidemic disease,
constituting it as a disease created the necessary,
cultural, bureaucratic and legislative context to regard
or at least to establish, to rhetorically establish ABA
as a medically necessary intervention for autism, okay.
So this didn’t happen by magic, between 2007 and 2019,
the behavioral intervention industry,
along with its main non-profit corporations,
Autism Speaks and the Behavioral Analyst Certification Board
collectively lobbied to pass boilerplate legislation
in all 50 US states declaring ABA,
to be medically necessary intervention for autism
and thereby requiring health insurance to fund it,
to the exclusion of most other interventions.
Remember I asked, what does epidemic
disease accomplish rhetorically?
Well, this is its accomplishment.
You can’t argue that something
is medically necessary unless you’ve already established
it as being a medical matter, a medical disease, right?
And so it had a significant commercial impact.
Autism as epidemic disease also enabled
the accomplishment of the establishment.
This is by the AMA, the American Medical Association,
of permanent medical billing codes
for ABA intervention for autism,
which essentially simply bureaucratically streamlined
the revenue flows to make everything flow much more quickly,
efficiently, easily, into behavioral consultancies.
Also not by magic, this was through active lobbying,
bureaucratic organizational work of Autism Speaks,
the ABAI and the BACB also helped, okay?
So all that is related to medical, right?
That’s you know, if you’re gonna call it a disease,
we’ve got those two accomplishments.
We’ve established ABA to be medically necessary.
We’ve made it very easy to bill ABA,
but why epidemic disease, right, why not just disease?
We’ve now unfortunately all seen before our own eyes,
what epidemic and even pandemic spread looks like.
Autism is most definitely not that.
Why did they use this very hyperbolic epidemic metaphor?
I said that it accomplished two things.
It constituted autism as a disease and therefore
a medical matter, which we just talked about,
but it secondly, additionally generated a very strong sense
of threat, urgency or cultural fear.
Epidemic ups the stakes, it creates more urgency.
It creates more fear, okay?
And all of these rhetorics that the AIC deploys,
I say, you know, hope may inspire us
to take particular action.
Science might persuade us to take others, but fear,
fear as a discourse, fear mobilizes funding, okay.
Again, this is tried and true playbook, okay?
There is no way that you successfully push through
boilerplate legislation in all 50 US states in just 12 years
without a substantial amount of cultural fear mongering
driving it and incidentally,
a fair amount of big money funding it.
So two other points that we’ll consider
about the so-called autism epidemic or what I prefer
to call the diagnostic sub-sector at work.
First is that changes to the diagnostic criteria
for autism could not have more successfully created
the appearance of an autism epidemic if they had tried,
and I’m actually kind of pretty sure they tried.
Secondly, so-called autism clusters tend to be centered,
not around, you know, they’re not around super fun sites,
they’re not around any environmental toxins,
but rather they tend to be clustered
around commercial centers of the diagnostic
and intervention industries, right?
Where are the main clusters of autism in the US?
They are in California, Massachusetts and New Jersey.
What on earth is the legacy in California?
We’ve got UCLA, we’ve got Ivar Løvaas.
We’ve got the Young Autism Project
was going on decades earlier locally to UCLA,
than it was going on around the rest of the country.
Massachusetts has the commercial and diagnostic legacies
there of Skinner, the exact same thing.
The commercial architecture is there.
New Jersey, we have Rutgers and others,
and we have a very strong and very prolific for-profit set
of autism intervention services in New Jersey.
Okay, so to revisit the question that I started with,
so how did we get from the 11 children,
11 first identified by Leo Kannoer in 1943
as autistic to the billion dollar
autism industries that are booming today?
We got here via the 20th century laborers
and the ongoing 21st century laborers of the AIC.
So here’s a very quick timeline to illustrate.
In 1943, Leo Kanner identified autism in the US.
1952, the second edition of the DSM
included autism as a psychiatric diagnosis.
Putting it in as a psychiatric diagnosis
placed it squarely within the purview
of child psychiatrists to diagnose autism.
Primarily that diagnosis was only applied
to children who were already living
in institutional settings and under
the care of a child psychiatrist, okay?
1980, the revision, the DSM-III,
autism was reclassified not as a psychiatric disorder,
but rather as a developmental disorder,
what impact did that have?
Well now the diagnostic gaze, if you will,
is now within the purview of pediatricians,
not just child psychiatrists working
in institutional settings.
Now we’re bringing into the diagnostic dragnet,
we’re bringing pediatricians, right?
So every child is going for well child visits,
we’re gonna have a lot more people having their eyes on,
going through checklists, classifying kids as autistic.
1987, the DSM-III-R broadened
the diagnostic criteria for autism, right?
They added, for example, the catchall category
of pervasive development disorder not otherwise specified.
That one was important because it enabled the diagnosis
of kids who we first sort of looked at and started wondering
about and evaluating over the age of 30 months, right?
The previous autism diagnosis, all of this had to be
in place before the child was 30 months of age.
So that broadened it again, probably more kids
are gonna get caught in that diagnostic gaze.
1990, we added autism as a category
of eligibility to Federal Special Education law.
The Individuals with Disabilities Education Act, right?
So now our diagnostic gaze is expanded further.
It now includes educators and also parents
knowing this is a category of eligibility,
my kid might be eligible for it.
You might wanna have your kid evaluated.
We might wanna send them to the
school-based child psychologist, okay?
We are adding more people to participate,
to actively participate in the diagnostic gaze.
1994, it gets broadened again, the DSM-IV,
established Autism Spectrum Disorder, which by the way,
appeared to be a sort of a test balloon because we now have
things like depressive disorders and schizophrenia
and others are now using this spectrum
conceptualization apparently successfully, right?
And then in 2013, the DSM-V tidied up a few things,
removed Asperger’s, et cetera, and the changes
that came out last month are really
not having much impact on this conversation, okay?
So in the first 70 years of the existence of autism,
as an idea, as a concept, as a thing,
the diagnostic criteria and the professionals involved
in diagnostic processes were broadened
or expanded, no fewer than five or six,
depending on how you wanna count it.
But let’s say no fewer five times.
I don’t call that an epidemic.
I call that manufacturing a market.
And this is the point at which I can hear you thinking,
oh, I can’t see you, but if I could see you,
I could see your little eyes rolling in your head.
Oh, Alicia, people always tell me this,
Oh, Alicia, you’re so cynical,
not everything is about capitalism.
Perhaps not, but you don’t need to take my word for it.
Why don’t we ask the capitalists
and spoiler, the capitalists clearly think
that autism is about capitalism even if you do not.
Market research firms, all of them,
are projecting, really bullish forecasts
for the autism markets globally over the next decade,
especially for the ABA and pharmaceutical markets,
you might wanna tell your broker.
Private equity and venture capital firms are acquiring
and consolidating as many autism-related assets
as they can get their hands on because high demand
plus low supply, we all know this,
marketing 101, high potential for profit.
And also let’s not forget that these industries
are largely on or under-regulated right now.
So the time to invest is now when the potential
for profit extraction is at its highest before
we get a lot of pesky regulations in there.
And then there’s the Autism Investor Summit.
No, I am not me this up, I could not possibly make this up.
Really, here we go, it’s coming up in April,
in less than three weeks, it’s in Beverly Hills.
Of course it’s in Beverly Hills.
It’s an exclusive, curated, by that they mean
they won’t let people like me in,
meet and great conference that puts LLC owners,
selling autism interventions in direct conversation
with private equity firms, venture capitalists,
and other potential investors and consolidators, by the way,
2022 marks, the fourth annual Autism Investor Summit.
So the capitalists know it’s about capitalism
and the behaviorists know it’s about capitalism
and they’re actually really kind of good at it.
So this is a book put out by some behaviors
about how to build a seven figure ABA firm.
Clearly there’s a little bit of being in it
for the, you know, for the money part.
By the way, the back of this book,
I’m not gonna subject you to it,
I believe it is self-published and there are
enough typos on the back of the book that make me
a little bit of afraid of the interior of the book.
Some of the behaviors are actually a little bit of cranky,
a little bit cranky about their autism LLCs
being commodified by private equity.
It’s a little bit ironic.
So what are they talking about
at the Autism Investor Summit, for example?
Are they talking at these meetings about what’s best
or what’s ethical or what’s scientific or what’s right?
Or what’s just for, let alone desired by, autistic people?
No, they’re talking about which business decisions
have the potential to extract the highest profits, period.
So who is invited to the Autism Investor Summit?
As I said, it’s curated, I don’t get to go.
Who is invited, stakeholders are invited, you know,
stakeholders, autism intervention LLC business owners,
ABA business owners, right, investment bankers,
they’re stakeholders, venture capitalists, legislators.
They’re regarded as stakeholders.
Not autistic people, commodities are not stakeholders.
And just in case you’re one of those people who’s thinking,
oh, what are you talking about?
We have to crash it, nothing about us without us.
Why aren’t they listening to the voices of autistic people?
I love you and I appreciate you, I really, really do.
But asking that question is a little bit like asking
why the chickens and the soybeans don’t get invited
to similar kinds of things that put little family farms
in touch with big corporate egg
when they’re doing similar, you know,
buying up, scaling up private equity,
venture capital investment, right?
The commodities don’t get a seat at the table.
So these stakeholders they get together
and these are the things that they talk about.
All of these phrases and bits
of language I pulled from their program.
They talk about mergers and acquisitions and deals
and buyers and sellers and consolidation
and market considerations and payer landscapes,
and value-based reimbursement
and revenue cycle management and private equity,
and apparently something called humology,
which I didn’t get I had to look it up,
it’s probably not that important.
All right, those of you who thought
I was just a lunatic cynic, anybody’s still think
this has nothing to do with capitalism?
So to go back to my original framing, thinking about April,
what are we gonna do with April?
Autism awareness isn’t inherently negative, right?
But we have to ask awareness of what?
I argue that greater awareness of the commodification
of autistic people would actually be a good thing.
If that awareness can lead
to a disruption of those processes, okay?
And autism acceptance by the way, all by itself,
isn’t necessarily inherently positive if it’s used
as a shiny object to groom consumption
and to groom brand loyalty and to distract
from asking the hard questions and to shield from view
the ongoing commodification of autistic people.
So this isn’t a simple binary consideration.
We can’t just say autism awareness,
bad, autism acceptance, good.
We should always ask, not just every April, who benefits?
The booming autism industries ultimately may
or may not improve the lives of autistic people,
but they certainly seem to be benefiting the many,
many non-autistic people that profit from their existence.
Thank you, thank you very, very much for your time.
That’s the title of my book and the QR code
is just a link to the publisher site,
which lists a detailed table of contents
because this presentation was just a teeny,
tiny little snippet of the overall analysis.
So if you’re interested in seeing what some
of the additional analysis is, you can find it there.
Thank you so much for your time.
– Thank you so much, Alicia.
Okay, you can stop sharing. – Okay.
Liz will come on in a second.
We’re about to post the link for the book giveaway.
And as I said, they will be first come, first serve,
just so everybody knows we we’ll do our best.
Okay, so first of all, thank you so much.
This topic obviously opens a ton
of potential topics that we could explore more.
– Poking a stick in a beehive
and swirling it around a little bit.
– Yeah, just a little maybe first Liz,
I’ll give it to you to let you comment.
– Well, I tell you when I read the manuscript,
the book, it was very eye-opening and I learned quite a bit.
I thought in listening to you today and thank you
for a wonderful, scholarly presentation and education.
I have many questions and I don’t know where to start.
The first thing that occurred to me was what if
every autistic person out there drops the label
and said, I’m just part of the human spectrum.
How could we do that?
I mean, we are all part of the human spectrum.
This is nonetheless created an identity
that is now difficult to, you can’t deny it,
but it’s done so as you very eloquently established,
through all these rhetoric and marketing plot,
but it has missed an opportunity in my opinion,
to unify us all as a society to help each other.
And I tell you as a scientist and a researcher
who doubts her work all the time and that’s how we operate.
– As scientists do, scientists doubt their own work, yes.
– We play devil’s advocate all the time.
What if, what if and we challenge ourself,
that’s how we do science and we highlight the errors
and they move forward trying to address
those errors and the caveats.
And so when I read your book and felt that science
was used and misused in the way that it has been,
I feel really terrible about that because
we’re suffering the consequences and I tell you,
I don’t come from the autism field per se.
I come from different and field and that’s why
I’m so shocked to see this in autism.
The lack of multidisciplinary collaboration,
the lack of transparency and with the errors that we make
in our inquiries and the lack of openness and so forth.
And the circularity of it all that I keep saying, well,
of course you already pre-labeled everything you’re doing.
What are you talking about?
There’s no self emerging phenomena here
that you can’t, you know, say or spontaneously,
okay, this is what it is and explains X or Y.
So it’s all very prescribed and,
you know, I just wonder how we could as a community,
as a collective, regain that opportunity.
How could we work together to regain
that opportunity of collaborative, positive work?
‘Cause I see this as a divider.
We are amidst a war zone here, we are Rutgers.
Rutgers is autism, ABA, behaviorism panacea.
We are a stick in the heart of the whole thing.
And I do want to collaborate.
I do want to establish a path of communication that
is driven by the autistic community to change all of this.
And just one last thing before I handle it to you
and the rest of the public or the audience.
I do disagree a little bit with the last bit
of when you put out that wonderful timeline
of the DSM that is so illuminating.
That last change actually. – The most recent one?
The most recent one, I think is already having an impact.
– Do you, okay.
– No, I know this for a fact and we surveyed the BCBA.
They surveyed themselves, they came to us,
because here is the problem that
this epidemic thing created for them, right?
You have the, the ABA of the school system,
which is given for granted and who
would want to change any of that?
Already, they get their coverage and what have you,
it’s pervasive, it’s everywhere.
There’s no escape from that but here’s
the private practitioners conundrum.
That sensory inclusion of sensory issues open up
a floodgate of people from all walks of life
that were not before part of that diagnosis.
And in addition to that, the inclusion of ADHD,
which was in the DSM-IV not allowed
to be comorbid with autism, it was a diagnosis in itself,
now it is allowed to be comorbid.
Obviously then you can prescribe
more medication to more people, right?
So, you know, that poses a problem
because along with ADHD-cum-OCD threats,
a host of all issues that have moderate issues.
So now you have sensory and moderate,
which are the two things they have denied.
– They ignored, yeah.
– Yeah, that this doesn’t exist, there’s no issues there.
And now you have another issue that is,
they have this campaign of early detection
for early intervention nevermind that there’s no
proper intervention and they shouldn’t be because
you shouldn’t insult a nurse that nervous system
the way that is being done, but nevermind,
now you get toddlers being diagnosed
that people who got an ABA certification of any kind,
whether it is a D or the non-D or the paraprofessional
or whatever, BD whatever, does not have
any knowledge whatsoever to deal with toddlers.
– Sure, yeah.
– So what is happening is that many
of these folks who have a big heart,
they’re not just for the money.
I tell you, I have met BCBAs that really,
I wanna work with them and do something
to flip this around but those are the ones
that are coming to me and saying,
Liz, I’m becoming now certified on developmental models,
on other alternatives, because we don’t get what we need
to cope with the influx of new people
that these change in the DSM criteria created.
So in that regard, I think that within that world already,
there is friction that will lead to change.
And I’m seeing it, we actually surveyed it,
not only in New Jersey, but across the US and 80%
of the people that we survey 180 in each category of,
you know, New Jersey and the states, want a change,
and want collaboration and want neuroscience infused
and neurology and wearable sensing technology that enables
them to measure physical discomfort and so forth.
So anyhow, so the two questions are, one,
what do you think in a hypothetical situation
would happen if people walk out and say,
okay, here’s I hand you my autism label,
thank you very much, I’m gonna start over.
I’m just part of the human spectrum, deal with it.
And secondly, how do you think we could collaborate?
If you could travel in time, back in time,
how would you have done this differently
to get to a different point today
where we could collaborate with each other?
Those are my to question and thank you again
for you very illuminating–
– Who’s the, we Liz in your,
so we could collaborate, who’s the we in there?
– The entire community, the self-advocacy, the researchers,
the people that are profiting now
and need to understand that this is unfair to many
and to themselves even though they don’t see it that way,
because they’re really stopping progress.
So just everybody in the ecosystem of autism.
– So I’ve thought about this and people have asked,
you know, okay, so how do we, how do we dismantle the AIC?
And to me, the shorter answer is we don’t,
because I can’t see dismantling
capitalism anytime soon, right?
Science is conducted within capitalism, right?
All of the, you know, all the grants
and everything that we do is within
the constraints of a capitalist economy.
And so to your question about, you know,
what would happen if everybody just,
you know, refused the labeling,
what I talk about in the book is we say that,
you know, there’s no sort of grand redemptive path here.
There’s no dismantling, there’s no tearing it down
and building something new.
I think the reality is much messier than that,
which is we talk about working in the interesteses,
right in the spaces that are left between working
in the ruins in a way in the detritus of capitalism, right?
And there are different pockets and different spaces
and different people are able to do different kinds of work
depending upon their own positionality, right?
So one of the things that we do say in the book is,
we honor the kids, for example, who are incarcerated,
in spaces, in schools and in clinics and in institutions,
where they’re being restrained,
where they’re being secluded,
where they may be experiencing
chemical restraints and other kinds of things.
The kids who bite the teacher, right?
And we say really clearly, you know what,
if this child is resisting these bio-political technologies
of control upon their body with the only instrument
available to them which is literally their body
and their teeth and their fingernail,
we honor that resistance, even though that resistance
may not even happen with the luxury of knowing
that there’s other people resisting this.
That there’s other people trying to sort of, you know,
get you out of the situation, other people having your back.
That is a very immediate, in the present, in the moment,
in very intimate personal space, kind of resistance, right?
There’s other kinds of resistances, right?
There’s organized resistance in terms of like
civil rights, political rights.
You know, we have ACAN doing a ton of really,
really good policy work, working within the instruments
of a neoliberal legislative state, right?
We’ve got these instruments of here’s how
we lobby policy makers, by the way, today’s the last day,
please go on to the IACC and submit your public comment
about what you want to be your priorities
for autism research funding dollars to go to, right?
There are those mechanisms that we can
and should be deploying whenever we can,
whenever we are capable and to your question,
there’s already people doing that list.
There are already people who have the ability
and the privilege to be able to do it.
I call that living off grid or living in stealth mode.
There are people who choose not to choose
either not to disclose their diagnosis
or choose not to engage in diagnostic processes, right?
And who live sort of off grid, right?
Who find a niche employment opportunity that works well
with their autistic strengths and that doesn’t
require certain compromises be made.
The question becomes to what extent do you need
or value or desire supports and if you need or value
or desire supports the diagnostic process,
as you know, is your ticket to it.
It is a necessary ticket to accessing those services,
unless you are independently wealthy and can privately pay.
That’s simply how our system is set up, right?
And we do continue to, you know,
we’ve got public school dollars
and then we’ve got health insurance dollars, right?
Those are the two sort of major funding streams
that can support various kinds of therapies.
In my mind, it’s not that I see any dismantling of it.
I really don’t necessarily see that but what I am trying
to pursue is let’s look it in the face,
and I recognize the irony of that metaphor,
by the way, look me in the eyes, right?
We need to recognize that what is happening here
is at many, many, many levels driven by capital.
So when somebody says, this is best for your child,
I have only your best interest at heart.
I have absolute confidence that the individual
clinician saying that does in fact
probably have your child’s best interest at heart,
or your best interest at heart,
but that’s also not the only interest that
that person has and that’s not the only interest that
that person’s employers have, right?
And so I think that reckoning with the commercial
infrastructure and reckoning with the economics of it,
at a minimum should enable people
to ask different sets of questions, right?
You know, and I think that asking different sets
of questions can be empowering.
I don’t see a grand dismantling,
but I do see increasingly a refusal of diagnosis.
I also see a certain embrace of non-binarism, right?
We have this very, very binary concept
of autistic and non-autistic, right?
Autistic and allistic and do you have a diagnosis?
You know, do you not?
And there’s I think something to be said
for beginning to interrogate the binarism
of that particular construct as well.
And as far as working with one another,
again, I think it’s a messy business
and I think each of us does it every day in our own way.
You know, I wish I knew, I wish I could, you know,
wave the magic wand, but I think the one thing I do know
is that I’ve gotten to the point of refusing
to involve myself in initiatives that do not center
the act of participation of autistic people,
speaking and non-speaking, right?
So when I get, you know, invitations to do this,
or to do that, or to do the other,
always, my first question is, well,
who are the autistic people that you’ve involved
in the design of this project?
And usually then they say, oh, we need to get some, right?
And so to me, you know, in terms of where
energies are best spent, I tend to really, really gravitate
toward initiatives that involve autistic people centrally,
not as an afterthought for the sake of branding.
So you can say, oh, look, we have
this autistic person over here, it’s our token person
we ask to come to our meetings, right?
And you guys at this center have just done
this amazing job of really foregrounding and really,
really giving a platform to autistic agendas.
And you know, that to me is a huge, huge launching point.
I don’t know if it’s that people who fail
to include autistic people in their research agendas,
in their, you know, does it really not occur to them
that maybe they should, or, you know,
I go back and forth on that question
as to whether it’s sort of active exclusion
because that would be in convenient, right?
Versus really a level of kind of ignorance
that’s somewhat shocking.
– Yeah, I think it’s probably a combination of the two,
honestly, and you know for many people,
and you’ve both talked about this,
you know, Liz has the up in St. Clair
“on some of her research articles.”
And it’s, you know, if paychecks are tied
to delivering certain services that are not
in the best interest of autistic people,
then there is going to be an inability to, you know,
change anything and something that I wanted to bring up
and we will get to your questions just
so everyone knows I’m gonna try my best.
I really wanna get to two points first.
In talking about like, the point that you made
about how fear gets funding is, I mean, it’s so true
and that happens both on a macro level
in terms of the epidemic and then
also in terms of a micro level.
So like on the macro level, you know,
we hear about the financial tsunami, as you mentioned,
and, you know, organizations talk about the cost of autism,
and then you see the rates, you know,
so there’s all of this monitoring going on of like, oh,
we have no idea why the rates have changed so much,
so we have to put all this money
into this particular sector and then on a micro level,
parents are almost coerced by the narrative to spending,
I don’t know how much money, but I know I have–
– Mortgage your house, yeah.
– Yes, bankrupting themselves,
putting second mortgages on their homes,
you know, spending every dollar they have,
40 hours a week or whatever it is, whatever the service is,
in service of essentially saving their child
because that’s spend the narrative.
So I just wondered if you would,
both for those who are watching,
Liz, ’cause I know that this
is your thing too, with your research.
So what are your suggestions to families
because we know that there is this fear-based narrative
and autism is not an epidemic.
You’ve both, you know, explored this through
your research in different ways, but also like,
and I feel like I’m missing the essence
of my question now, but just like,
how do these factors play a role because the cost
that is being sold to us and that is then being put
onto families is actually just happening
because of the narrative of the AIC,
as opposed to what is actually ethically,
perhaps medically appropriate for an autistic child.
– Right, right, and so a couple points, number one,
that the whole narrative about the high cost, right?
Billions of dollars, you have this child’s gonna cost
millions of dollars in their lifetime.
That gets trotted out to, again, just like the epidemic,
that functions to establish urgency,
but look by the same token, let’s be perfectly clear.
The flip side of cost, cost is only cost
if you’re paying it, the flip side
of this astronomically high cost is revenue, right?
And so if we know that there’s this astronomically high,
you know, costs, from the, you know, vendor side,
that’s great news because we’ve got
a steady stream of dollars coming in, right?
And, yeah, parents are.
Who wouldn’t be frightened if, you know,
if you’re being told all these horrible,
horrible stories about, you know, your child, you know,
having no life and you’ll never be able
to, you know, hug them and they’ll never say,
you know, all of the fear gets sort of ginned up.
And parents are in a really very difficult position
because many, many, many parents
of autistic people are themselves non-autistic.
And so you’re at a bit of a disadvantage, right?
And I do this in my teacher-ed work as a professor.
In schools, we spend a lot of time talking with, you know,
people who are preparing to be teachers
of students with disabilities, right?
We spend a lot of time teaching them
to build relationships with families and with parents
and understand the parent perspective and yada, yada.
Well, I believe that the exclusive emphasis
on that also fuels problems,
specifically in terms of autism, right?
I also make my students engage
with autistic adults and I say, okay,
so the parents of autistic people who may be
non-autistic parents of autistic people,
may themselves be dealing a little bit
with some of their own internalized ableism about
not wanting to have necessarily a disabled child, right?
And so, you know, I believe we have an obligation
to support families through that and one of the mechanisms
for doing that is involving autistic adults, right,
as allies and as resources,
not only for teachers but for families.
And it’s very analogous to thinking,
I find it very analogous to thinking about queer kids.
So if you’re a cisgendered heterosexual parent,
and you have a kid that you presumed
to be cisgendered and heterosexual,
and then when they’re 10 or 11 or 12 or 15,
they come out as queer,tThey come out as non-binary,
they come out as gay, you know, then as a parent,
you’re like oh, this isn’t the child I thought I had,
oh, okay, there’s an adjustment.
And usually there’s a welcoming embrace
of connecting your kid with queer culture, right?
Because you know, most cisgender heteronormative parents
are gonna consider themselves the experts
on being a queer adolescent, right?
Whereas in autism politics, there’s this somewhat insularity
about, you know, being the parent
of an autistic person as being like the,
sort of the ultimate, sort of, you know,
credibility in terms of knowing about the experience, right?
And I think what we need to do is connect
non-autistic parents of autistic people
with other adult autistic people,
to be able to connect them and I think I may have lost
the thread of your question and for that I apologize.
– No, it’s okay, hopefully my internet is okay.
So just going back to, it was essentially,
how, like even the parents end up being like,
you’ve said this in your book, both the parents
and autistic people actually sort of become,
you know, part of this system.
– Yeah, the parents get groomed as consumers
of autism intervention on behalf of their child, yeah.
– Right, Liz, go ahead.
– I’d like to circle back to the issue of
the “epidemic and the cost”, right?
Because and I’m going to speak from the standpoint
of a researcher that I saw such a heterogeneity
in the population that came to my lab and I said,
this cannot possibly, you know, so I had to study
other neurological conditions.
I had to study other other issues with the nervous system
and the homogeneity in those conditions was lost in autism.
It was like each child was completely different
and I would get children with cerebral palsy dystonia,
OCD, Tourette’s, all called autistic.
I would get children with Fragile X mutation, full mutation,
pre-mutation carrier, H chunk 3 deletion Syndrome,
Timothy Syndrome and what had started to worry me was
that all having this label of autism
were being put through the same kind
of one-size-fits all model therapeutic intervention,
without regards of the dangers
that this would pose for their heart,
in some of these disorders of genetic origins,
the heart can stop period.
For the dysregulation of their nervous system
which responds with a lot of stress and anxiety
because of just the nature of how things,
they perceive the world and so forth.
And all of these children and adolescents
were called autistic, one word summarizing this huge number
of heterogeneous conditions that I could not believe my eyes
and in any kind of grant that I would have to apply for,
I would have to include necessarily
a diagnostician and funding for that,
even if they brought their diagnosis with them.
And sometimes because it’s difficult to find families
to actually come to the research years ago.
Now, I found with word of mouth my research
is very well known out there among the families
and we just as a community.
But when I started, when I first started, there was no,
for example, in Parkinson’s disease,
there are support groups for the caregivers.
So if I wanted to do research on something like say,
facial expressions during episodes or whatever,
I go to the support group where the caregivers are
and they get respite and so forth and they know
a lot about this, what to expect and so on.
And they cope with each other and talk to each other
and that’s why it’s a support group.
And I would go there with my flyers and say,
I’m about to do this and this is my lab and so forth.
I would get patients to come to the lab
in the span of two weeks,
I’m done with my number of people that I need,
if more wanted to who come perfect, we do more.
In autism, I couldn’t find this.
It’s like the families were, you know,
even though we have in New Jersey this high prevalence,
I could not believe, right, nowhere to be seen.
Where do I talk to people?
All organizations, these non-profits,
there are approximately a 1000 of them in New Jersey,
by the way, active, that they report to the IRS.
They’re active and it’s public domain knowledge.
They would not help you.
They simply would not help you as the researcher.
And you know it started to change when my research
got well known and we were measuring, you know,
things like heart rate variability and modal noise
and EEG patterns and things like that
and parents started flooding into the lab
and asking us for like a profile of their child.
And this was something that I started advocating,
let’s profile the physiology of the child,
and give the parents this as an empowering tool
to take to the clinicians that will not do this for them.
They need to know the dangers
of putting their child under stress.
And this was a way to kind of go around the whole AIC,
that it was really killing our ability to do research.
And by the way, I am persona non grata
in places like Simons Foundation, Autism Speaks
and all those, the other autism science,
totally persona non grata, okay?
And Jen and I experienced them and we were asked
to leave the at Simons Foundation venue at New York City,
you know, very politely, but it’s time to go.
So, you know, this kind of attitude is very pervasive
and is counter producing to research
and people who do actual rigorous research.
Luckily we’ve overcome that because
the families we work with the families,
but this is precisely why this center is so different.
The first thing I did was to find a Program Manager
that was a family that knew the issues.
I don’t know these issues, just like I don’t know
many other areas of research so I collaborate
with people who are experts on those areas.
That’s the spirit and I am hoping,
and there are other parents in our organization, by the way,
and other people who work behind the scenes
that are either autistic or families,
we’re all kind of going through like a timeline,
what are the needs before the diagnosis?
What are the needs after the diagnosis in elementary school?
What are the needs in middle school?
What are the needs in high school?
What about when you become a young adult?
So we are learning from the families day to day,
and that’s how we’re doing it differently and I’m hoping
that this becomes some model for other places,
but it has been an easy path, okay, far from it.
– And it’s all very centered on, you know,
the diagnostic process, as you point out, right?
And by the way, all of those kids that, you know,
have other, you know, labels of CP and other things,
you know, and within schools,
an autism label is a ticket to service, right?
You get higher levels of service with an autism label
than you do with others, right?
That’s purely an economic ticket thing.
But one of the things I do in the book is look at,
I compare, for example, I look at the CDC web pages
and how our, you know, sort of public health posture
is toward autistic people as opposed
to our public health posture policy-wise,
toward queer and trans kids, right?
Because the numbers are virtually identical, right?
One in 54 and one in 55, right.
And arguably, you know, there are many, many more trans kids
out in the communities and in the schools now
than there were 10 years ago, right?
Those numbers have gone up and there is nothing
anywhere in our public policy about this epidemic
of all the trans kids, right?
What is on the policy pages is if there’s any urgency,
it’s about the fact that this is an underserved population.
We public health professionals have fallen down
on the job and we not anticipated
and we are not yet meeting the needs
of these adolescents and these young adults.
And so all of the urgency, that’s on CDC pages around
queer and trans youth, that is all about the urgency
of our professions having not yet caught up
to serving everyone and basically where we have,
you know, sort of screwed up and not yet served
these populations, the exact same numbers
on the autism page, that’s all about the urgency
and the epidemic, and, oh my God, there’s so many people,
and there’s nothing in there about serving autistic people.
It’s about finding them, hunting them down,
labeling and diagnosing them, right?
And it’s a fundamentally different posture
and so to go back to your question, you know, what if,
you know, what if this were, you know,
regarded more as a, you know, just part of the fabric,
quite literally, as it always has been
of human, neurological diversity, right?
You know, we have models for what that might look like.
And in fact, we have models for
what it looked like before the AIC.
It’s not like there weren’t any
autistic people before 1943. – Yeah.
So we know what this used to look like.
You know, we could go back to it a little bit.
– Okay, so, and again, just to make sure
that we point this out to everyone,
so the cost of autism is being sold by those
who actually profit from talking about the cost of autism.
So, you know, the cost that they’re including
are all of the therapies and, you know,
different products and ideas that are actually being
pushed out to the public in order
to maintain this whole profit structure, right?
Does that make sense, okay.
So I wanna go to one of the questions that we have.
So Joe, if you could share, I don’t know if we’re gonna
be able to get to all, Alicia, are you okay on time?
– They’ll be mad at me later, but I’ll mop it up later.
– Okay, thank you, okay.
So we had a couple questions sort of along this theme.
So I’m just gonna do this one, so it says not all–
– Autistic person may be benefiting from this arrangement
if in fact the alternative was unemployment, right?
Not being employed in any way.
At the same time, this is a mechanism
of grooming people into the labor market,
in a particular niche and if it’s
not competitive employment, right,
if you have say, a particular talent,
that is being effectively harvested and commodified
for the benefit of the corporation and what
you are being paid is not a competitive wage,
if a non-autistic person displayed that same talent, right,
they would probably be given a raise, right?
If you’re not in a competitive wage framework,
then maybe that is better than not having any income at all
but it is also functioning at least in part,
as branding for that company that we have this program,
where we hire, you know, neurodivergent individuals
and lots of companies do that, right?
It functions at least in part as a branding exercise.
So to me, I was like, you know, if you’ve got
autistic people working for you and you don’t know it,
and their salary and their wage has nothing
to do with whether you think or know
that they’re autistic or not, we’re good.
If you have like a program that you’re like
hiring autistic people and their wages
are not commensurate with what other people are doing,
and you sort of advertise that you have this program,
I’m not saying it’s bad, I’m saying it is problematic
and we should think about it.
We should think about who’s benefiting because yes,
there may be benefits to the autistic people.
There are probably also branding benefits to the company
and that is part of the commodification process.
And so, you know, these are questions
I would like to see asked.
I would like to see each of us in our own role
in the economy to be asking these questions of ourselves
and ask, are there ways that we can in all of this mess,
perhaps direct more capital toward autistic people,
rather than sort of harvesting capital
off the backs of autistic people.
– Yeah, I completely agree and I think this is related
to what you presented like early on in your presentation,
about how just because something is autism acceptance,
doesn’t make it inherently positive.
There have to be other things associated
with that in order to make it like redeemable, I guess.
– And it’s possible that it’s deployed as, you know,
as I said, as a branding tactic, right?
Because reputational capital is a thing,
reputational capital raises your capital-capital, right?
So yeah, just, these are questions
I think we should all ask of ourselves.
– Well, I think one easy way to tell is how much agency
that company gives to the autistic individual.
How much agency the autistic individual gains
from being associated with that,
because equity issues are across the board.
I mean, we all from women in academia to,
you know, to colored people, this is a general situation
that we have in capitalism 101.
So yeah, so the amount of agency would give me,
be like a thermometer for me to, you know,
to actually trust what’s going on there.
– Like just yesterday I saw some commercial,
it was for like a cruise line or something, right.
Go on this luxury cruise line, we have women captains
of our books and I’m thinking, okay, so, A,
are the female captains making the exact same wage
as the male captains and, B. – Right.
You’re like just totally using this woman in an ad
to try to get more people to come to your cruise line,
as opposed to other cruise lines because of the fact
that you have at least one female captain,
you’re using that as a marketing ploy
to bring in more business and if in fact that female captain
is enriching your revenue, then maybe you should give her
a little kickback on her wages.
– Yeah, sorry okay, where did this question go?
Okay, so the next question here was.
Okay, so essentially, and I know you’re gonna love
this question, can you guys hear me okay?
– Okay, isn’t Alicia’s book or any literature written
on the topic of autism, part of the AIC?
Why do we allow people in the autism industry
to not be labeled as part of the AIC?
Like where do we allow them?
– Oh, it’s totally part of the AIC.
– But I guess we kind of just walked it off a little bit.
– You can’t comment on autism without participating
and I should have said it in the presentation,
but it’s very clear in the book, I’m part of the AIC, right?
By the way, it’s gonna be many, many, many,
many, many, many years before, you know,
I turn anything like a profit on my book, right?
So I’m not like, you know, going to be making
bazillions of dollars from it, trust me.
But yes, absolutely, absolutely,
because autism is a commodity and so yes.
Books about autism, conferences about autism,
all of that participate in the commodification.
Absolutely, myself included, I acknowledge that, yes.
Jen, are you frozen?
– I think that we’re having issues with the internet.
– All right, I apologize for my internet.
I’m gonna go. – Okay.
– You’re moving again.
– Okay, I’m so sorry, it’s not a good day
for my internet I guess.
I didn’t really hear anything that was said,
but I’m gonna go to the next question
unless one of you was talking more.
– No, go ahead.
– Okay, Joe, I don’t even know if I sent this one to you.
Okay, so I’m frustrated by the idea
of autistic people increasingly staying outside
the diagnostic process as our option for staying
away from coercive and commodifying forces.
I’m self-identified in my 40s and grieving
for what could have been better in the first half
of my life and in my never diagnosed parents’ lives,
if we had known we were autistic sooner,
and what I want for my kids is for their lives to be better
because they know and have access to support sooner.
I do not want us to allow diagnostic criteria to exclude
high masking autistics because it benefits the AIC.
I want to push for more inclusion
and support for high masking autistics,
but the AIC doesn’t want that because
it doesn’t fit with their fear mongering narrative.
Do you see any strategies for advocacy
that seem likely to work toward these goals?
– Just one second, the audience person understands
that this was a hypothetical, what if question, right?
Not a proposition, right?
– Sure, yeah.
– Yeah, I mean, it’s like impossible,
but it was like a what if you did this.
– In a way it’s almost like, is there a way for people
to reject being sucked into this,
and you did say you kind of, you know,
live off grid in a way, but it’s like,
some people do need support and services and, you know,
want to have the community.
– Right, I mean, I think there are as many ways
of doing this as there are autistic people, right?
I mean, I think this is really very much, as I said,
there’s no sort of grand redemptive
reconstructive narrative here.
There’s a lot of subversion, I think as possibilities,
there’s a lot of, you know, underground work going on.
There’s also a lot of, you know,
injecting yourself into whatever spaces you are,
you feel safe injecting yourself into, right?
So masking has really toxic consequences
that build up physiological, stressful consequences
that build up over time, all right?
We know this and we have, you know,
generation upon generation upon generation,
upon generation of people who have been engaged
in masking activities, either on their own
or because recently in the last, you know,
30 years, because they were ABA’d into it, right?
Part of that is again about changing
the mindset of the culture and how we think
about autistic experience and autistic ways of being.
And this goes back to the non-binary question, right?
I mean, if you look at, you know, 200 years ago,
people had, you know, an eccentric uncle,
who was just an eccentric uncle, right.
And who all the family gatherings were such
that the autistic uncle participated in ways
that he was comfortable with and oh yeah,
we do such and such with him when he comes over
and you can’t be loud in the front room and you can go here
and supports were local, they were organic.
They were primarily devised by families
and close care networks, right?
And I think that within autistic communities,
we had all of these sort of cells of community.
There’s a very cellular network, it’s a very disconnected,
disjointed anarchic kind of network, which to be honest,
autistic people are like the ultimate anarchists, right?
Mostly you participate by yourself,
but you’ll go a little bit here, a little bit here.
You’ve got your own little cells
and that organizational structure,
that cellular organizational structure,
I think is actually really, really, really, really valuable
and probably a little bit underexploited,
because again, it doesn’t have to be,
hey, I’m gonna sign on to some great big monolithic group
and get on board with this policy agenda
or this activist agenda or this, that, or the other thing,
there’s a very, very loosely distributed,
you know, anarchic kind of way of being,
you know, if you’re autistic, right?
That sort of lends itself to anarchic
kind of resistance and responses.
Yeah, I don’t think that anybody
should like feel that they have to not disclose
and continue to mask as their only way
of being outside the AIC, that is one tactic
that some people employ, I’m not trying to, you know,
advocate it as something that everyone
who can do it should do it, I’m saying that some people
who can do that choose to do that
and many who could do it don’t, right.
So again, it falls back to me to, you know,
there is a lot of autistic agency
that can and should be exercised here,
but in small asynchronous, decentralized,
sort of cellular communities.
I think Jen is frozen again.
– There’s Jen.
– Maybe I could ask you a question, Alicia,
while Jen comes back, the LGBTQ community
has been successful in shifting, I don’t know the vision,
and it is kind of a community that was in parallel.
Like in reading your book, I learned, for example,
the origins of these feminine boys’ conversion therapy,
in Løvaas initial trial of ABA and yet,
it seems to be that it started kind of in a parallel,
but it just deviated in this and it’s now successful
in the sense that the community appreciates that group
and embraces it and or at least pretends to,
or something because it’s different, definitely different,
and also is an evolving process,
but already you can see the progress.
But this is not how happening in autism
and there is overlapping and there is some overlap even.
– There’s a lot of overlap.
There’s a lot of overlap between the autistic communities
and queer and trans communities
and the central distinction in my reading,
in my understanding of the historical analysis,
is the fundamental difference that caused
these divergent trajectory is that autistic people
were commodified and queer and trans people
were not successfully commodified.
That’s the simple, you know, clearest, and they tried,
right, they did try, you know,
all of the same kinds of mechanisms, the same, you know,
shock mechanisms and whatnot that they used
in the feminine boys project and the young autism project.
You know, they were marketing, you know,
feral instruments that sold the wireless shockers
and all these other things that were involved in YAP,
they had ads selling their exact same products,
targeting, you know, people that were targeting,
you know, gay conversion therapy.
So that one ultimately didn’t take off, right?
And Jake Pine who does some really fabulous work on this,
I’m gonna be doing a different webinar with him
and Robin next week, he talks about, ironically,
that queer and trans communities, you know, became people.
Became understood and seen as fully human,
as opposed to, you know, many autistic communities are still
not viewed as fully human by non-autistic communities right?
And I have talked to him about this
and I sort of go one further, I’m like,
yes, it’s not just a add it is that,
but it’s not just that, it’s that queer
and trans communities manage to escape
industrial scale commodification,
which is why I hope that, you know,
anything that can be commodified, theoretically,
should be able to be de commodified, right?
Which is why the questions that I wanna ask are questions
that have at least some potential here and there
in distributed kinds of spaces to disrupt
the commodification process and I see that as central.
– Yeah, I’m back, and I’m so sorry for all of my issues.
Adding to that, can we talk about
the resistance to that disruption?
Because as Liz, you know, sort of mentioned
before about, you know, persona non grata, you know,
anyone who is looking to disrupt these things does face,
you know, whether it’s resistant,
many have faced harassment, you know,
sabotage threats, you know, all sorts of things.
And really it presents a problem because it’s like this,
you know, the more powerful by definition, have more power.
And so, you know, those who are actually trying
to resist and push back, have,
you know, much less footing to do so.
So like, what do you think about that
and is there a way for, you know, like,
do you feel like those people need to form
more of an organized collaborative?
Or what are your thoughts on that?
– Well, people who have power rarely share it, right?
And all civil rights work, all human rights work,
through all of human history has always been uphill.
I mean, it is what it is, it’s the nature of the work.
If you’re gonna speak truth to power,
you’re gonna get harassed and you’re gonna get trolled
and you’re gonna get intimidated and people
are gonna call you a charlatan and people are gonna get,
and in my experience, the more shrill they get,
you’re getting good, you’re getting close, right?
You’ve made an impact, right?
You know, they wouldn’t bother
with all of that if you had no impact, right?
So when they get really shrill,
I get a little bit heartened that, okay,
they wouldn’t bother getting shrill with me
if they weren’t worried that whatever I’m doing
might have some impact on their bottom line
or at least on their power base.
And yes, absolutely, greater power comes from coalition
and collaboration at the same time,
I don’t think that necessarily,
that needs to be or should be sort of monolithic.
There is no such thing as you know,
the autistic experience, right?
White, autistic males who are living
in an affluent New Jersey suburb probably do not share
an awful lot in terms of a policy or activist agenda
with women of color who are living in the global South.
And so I’m wary of sort of making anything monolithic,
because I think that as I said, the diversity is part
of the strength and that one needs to engage
in one’s own collective activities,
at whatever level and in whatever manner,
one both has access to and is comfortable with.
– Yeah, yeah, that makes sense.
Okay, so something else, so again, this is April.
A lot of well meaning people outside of autism,
you know, are wanting to show support.
I would argue that there’s many other more important ways
than just wearing a color or something of that sort.
But I wanted you to talk a little bit,
because we’ve talked about this offline in the past,
wearing blue and puzzle pieces and things like that,
you know, the argument from the autistic community has been,
you know, Autism Speaks has harmed us, you know,
blue was meant to signify boys.
You know, so there’s a variety of arguments in that light.
But what you also said that I thought was like incredible,
because I hadn’t fully thought of it
this way until you pointed it out was that,
everyone wearing blue and putting up puzzles and you know,
doing these little activities,
is actually part of the branding.
– So that for people outside of autism,
so people outside of autism might think,
well, this has nothing to do with me, why should I care?
Tell them why they should care.
– Because you are participating,
you’re being a billboard for Autism Speaks, right?
You put on a t-shirt with a big,
now they’re rainbow colored, you know, puzzle piece.
You know, you send your 20 bucks to the walk, right?
By wearing the iconography, you are participating
in distributing and the brand logo.
And the brand of Autism Speaks is that,
you know, this puzzle piece is a symbol
of legitimate authority about autism, right?
And if you are wearing it, you know,
it’s no more different than, you know,
you putting a billboard, you know, on the side of your car
and driving around and advertising some local business,
in order for that to happen, they have to pay you, right?
For you to advertise the brand.
So, I mean, yeah, somebody said to me,
I can’t figure out why all those children are, you know,
coloring the puzzle pieces and hanging them up in the school
that doesn’t serve anyone, why are they doing that?
I’m like, because they’re grooming brand loyalty, right?
That when those kids, maybe those kids are eight
and they’re coloring, but then when they’re 18 or 24,
and they have a child and they’re told
that they should refer them for an autism evaluation
and then they’re like, oh, I don’t know anything
about autism, wait, oh, I remember,
yeah, that place with all the puzzle pieces.
Yes, they always knew about autism
and then you go there, right?
There’s a long game being played about
grooming consumer confidence in a particular brand.
So that is my rationale, my argument for refusing
to wear blue, you know, refusing the puzzle pieces,
all of that, if you wanna make a donation somewhere,
make sure that it’s being directed to an organization
that is run by autistic people for autistic people.
You know, same things you would think about
if you were gonna donate to any kind of a nonprofit, right?
– Yeah, yeah and I think understanding that just because
something exists and has a certain narrative,
again, you shouldn’t make assumptions
about what is being done and more broadly,
the reason I bring this up is because I think
that a lot of people who either aren’t autistic
or don’t have an autistic family member yet,
or, you know, don’t work in this field,
it’s like they don’t really understand
how this actually does directly impact them as well.
The AIC, which is all of the ideas and the narratives
that have been conjured for all of these years,
your tax dollars are contributing to this.
Not only that, but like Alicia said,
if your children get diagnosed someday or your niece
or your nephew, or anyone that you know, yes, or you,
you know, these ideas that are being perpetuated
and funded and pushed for policy all have a direct impact
on what will happen to whatever your connection is.
It also may make you more likely to enter
the helping field in service of these ideas
as opposed to in service of autistic people themselves.
– I tend to be positive about the future,
so I think that the type of awareness that your work brings
in some slide, you said, oh, it’s cynical at times,
but I think it’s very important
that people see it for what it is,
because that type of awareness is the type
of awareness that makes you stop dead
and think before agreeing to anything that,
you know, could actually do some damage to your kid,
unknowingly to you. – Yeah.
So we’re trying to build awareness of the science
in other fields that could provide support
and accommodations to people in this field
and spread the word, the sciences in other fields,
in neuroscience and genomics that don’t know about autism,
are learning now what is going on?
And, you know, through the center,
we’re inviting distinguished speakers.
We’re inviting people, they’re in shock to learn,
you know, what is being claimed as scientific here.
So I think that also helps and, you know,
little by little people will begin to see
like a mask falling and suddenly you start
seeing the truth for what it is.
And like Alficon said when he visited us,
many people might have to gulp and just cope with it
and understand the damage that was done
and move forward and try to change this.
And then we’ll look at it as, you know,
and try not to make this mistake again.
But I think that in the future, things will be better.
And I hope that these organizations that profited
so much from autism and that continue to profit,
change their narrative and change and help
in different ways to educate people differently
for contributions like your own and a different type
of science altogether that is more inclusive.
– I’ll rely on your optimism.
I’m gonna stay in my cynic lane for now.
– That’s good, it all works, I think that you need both.
And my plan is to convince people to try
and collaborate with this different model.
And if they don’t, we move forward with it anyways.
We have, you know, followers, we have people that
it’s the autistic community that’s working with us,
we can’t go wrong with it.
– [Jen] Can you both hear me?
– Yes. – Yes, we can.
– [Jen] First I’m so sorry for all of the issues today.
I wanna apologize to everyone including both of you.
It is certainly April Fool’s Day
and I just wanted to say that Alicia,
I think hopefully we posted the book survey link,
and Joe, can you just make sure.
And I just wanna thank you because this work of yours took
a couple of decades from what I think you’ve told me and–
– I’m a slow worker.
– [Jen] No, but I mean, it’s an extensive
and critical and thoughtful history
and I think going forward, if we can all keep this in mind,
it really will help free a lot of us from this, you know,
coercive nature of the AIC and hopefully
help us to resist it better.
So we really appreciate you sharing with us
and thank you so much to Liz.
Obviously, we love when you come on,
but I love when you come on especially,
and I wanna thank everyone again for watching.
I’m really, really sorry, again, for my internet issues.
And we will be back on Thursday.