Review of The Autism Industrial Complex: How Branding, Marketing and Capital Investment Turned Autism into Big Business

The information in this book is so incredibly important and immediately needs to be considered required reading for anyone attached to the “helping professions” that support autistic people (e.g. teachers, speech therapists, occupational therapists, physical therapists, pediatricians, etc.), parents of autistic people and also autistic people themselves. Alicia Broderick lays out the history of autism “intervention” and the development of what has become an industrial complex. 

I’m going to try to explain the AIC in two paragraphs

Autism is diagnosed and defined by media/pediatricians/therapists/educators/pharmaceutical companies/etc. as a disability, a problem, a set of symptoms to be eradicated, providing little to no hope of a “normal” future for children who receive the diagnosis. Intervention services, specifically applied behavior analysis (ABA) services- are offered by those who claim those services to be “scientifically proven” – but only if given in doses of 20-40 hours a week. Intense political lobbying efforts result in these services being named “medically necessary” and therefore required for insurance to fund them. 

What you have now is a foundation laid for profit-extraction with financial incentives for stakeholders to drum up business by finding more and more autistic “bodies” (as Broderick would call them) for which to prescribe more services. That gets done through fear-mongering media campaigns, “awareness” initiatives, pushes for “early intervention” and public admonitions to “know the signs of autism.” The widespread fear/awareness serves to justify what would otherwise be considered excessive and invasive “treatments” for any human being.  

This is a capital investment opportunity which makes autistic people the commodity.

Autism “intervention” is a multi-billion dollar industry. The AIC creates both the demand and supply for services. 

The identities/interests/opinions of actual autistic people are completely left out of the equation. 

Again- anyone operating within the “helping professions”- anyone believing they are acting in service of autistic people need to be made aware of the AIC and how they’re operating within it.

Alicia Broderick is a brilliant scholar who is operating on a wavelength that I don’t even think I can dream of aspiring to in my lifetime. That said- her writing rides up there on that wavelength. This is not a beach read- it’s an academic-language discussion of Ideas peppered with many many many citations to other academic-language Papers. I learned quite a few new vocabulary words, although I wasn’t able to get into enough research to arrive at a precise definition of “Foucauldian” which came up quite a few times. And while I admire her brilliance, I fear that her incredibly important message will remain buried in academic discourse when it needs to be proclaimed from rooftops and simplified on social media for consumption by the unacademic masses of which I’m a part. Us- the very cogs in the AIC machine. 

We need a bombshell Netflix documentary. A smart, biting podcast expose, perhaps? 

Until then, I’ll be returning to my regularly scheduled activities of screaming into my echo chamber… and adjusting my practices as a speech-language pathologist to support, rather than suppress, my fellow humans of all neurotypes. 

*Robin Roscigno, a co-author of several chapters of this book, has a TED talk about the Autism Industrial Complex (AIC) which everyone should watch.

*Alicia Broderick did a 2-hour presentation about the AIC for the New Jersey Autism Center of Excellence- also something everyone should watch. https://www.youtube.com/watch?v=-fxzfuvuek4 

Summer Reading

Oh summer reading, that thing that I dream about doing when it’s not summer. I think about the stack of books I’ll get to post on Instagram and be like those people who are like- yeah NBD, here’s all the books I’m reading this weekend. This weekend. I don’t know who these people are but they’re 1. Childless and 2. Liars. 

Here’s what I’ve read this summer: 

-180 pages of Obama’s latest book, A Promised Land. Then the library casually mentions that they’re considering the book “lost” and that if I don’t bring it back, I’ll owe them $45 and I won’t be able to use the library anymore. I think they think this is a good alternative to the old-fashioned late fees, but the mind games are way worse IMO. I returned the book and they pretended like nothing ever happened. Am I in an abusive relationship with the library? Maybe. (PS- in case the library is listening, I will love you forever, you pillar of civilization and real-life sliver of utopia.). I only got it from the library because the copy my sister got me from Amazon ended up being a weird bad-quality photocopy bootleg of the actual book. I only figured that out because I posted about it on Instagram BECAUSE CREDIT. I took a selfie with it, posted it, searched my own hashtag and saw that everybody else’s books were long and narrow, not short and stout like mine.

If you want to buy a teapot-shaped-bootleg copy of his book for $31.99 (instead of the actual book for $17.99), it’s the second search result on Amazon. I’m not going to link it here, because I don’t want to encourage/condone the buying/selling bootlegs, but the title of the listing is “By Barack Obama A Promised Land Hardcover 17 Nov 2020.” It doesn’t have a dust jacket- it’s just like a squished photocopy of the cover printed on adhesive paper and attached to the cardboard. I feel like I might be okay reading a bootleg copy of like a YA novel but I just can’t bring myself to do it for the biography of someone who I look up to mainly for holding to his Values. I contacted Amazon about it and they were like “OK, thanks for letting us know” which translates to “We don’t care” since it’s still listed. I’ll finish it someday… I’ll also have the bootleg copy forever because I don’t want to give it away and be partially responsible for someone else reading a bootleg copy. I have some dense psychological layers with this thing… moving on… 

(Here they are side-by-side… the bootleg and the library copy- bad quality image bc this is a screenshot of the picture I took because my phone doesn’t have enough storage to bring back the original image file in order for me to email it to myself to add to my blog- because I’m from the past, apparently.)

The Immortal Life of Henrietta Lacks by Rebecca Skloot. This was my pick for book club. Holy crow. I was aware of this book like a decade ago when it came out and it’s been on my mental list of “Books I should stop looking at my phone and read sometime.” Stop looking at your phone and read this book. It’s about how all of cellular biology and vaccine technology was made possible because of some cancerous cells that came from Henrietta Lacks and her family didn’t know anything about it until 20+ years later (all the while, of course, they were never compensated for anything and all struggled to get medical care themselves- AND John Hopkins subjected them to testing because of it and were misleading about their reasons). It’s yet another thing you should read if you’ve grown up privileged bc it will have been left out of your historical education. 

Petty: The Biography by Warren Zanes. This was an emotional rollercoaster for me… I read it with Spotify nearby to listen to all the random references to songs I wasn’t familiar with (and also songs I was very familiar with). Difficult to read about how Petty helped produce new work from older artists he’d grown up with (like Del Shannon and Roy Orbison)- when his own sunset career wouldn’t happen. And really difficult to read about how he’d overcome a big drug addiction only to die of an overdose 2 years after the book was published. Warren Zanes wrote a follow-up article in the Rolling Stone a year after Petty died- and it was all about coffee for some reason. Side note- if my dad had been alive, he would have gone through as many steps as possible to get his coffee made the same way. 

The Untethered Soul by Michael Singer. Currently in the middle of this one. It was a recommendation from a communication coach I’d been in touch with over the course of the school year who specifically helps people be more present when speaking since over 90% of people or so report that their mind “goes blank” when speaking “off the cuff.” The first couple chapters are about the internal monologue that’s constantly happening in your head- which gives me lots of thoughts, specifically about how there are some people who report not having that monologue. Also some thoughts about whether or not language in general limits our experience omg but maybe that will be another post… 

Natural Language Acquisition on the Autism Spectrum: The Journey from Echolalia to Self-Generated Language by Marge Blanc. Another post awaits- but I do want to at the very least make sure to note that echolalia is part of language development for autistic people and trying to train it out or punish it out of a person directly inhibits their language development so STOP and also, UGH. 

When Dimple Met Rishi by Sandhya Menon. I have a week until book club to read it and I haven’t started… you think I’ll make it?? We’ll see… 

Here’s a book stack for Instagram brought to you by Kix:

I’ve written this post while fending off my kids demanding screen time and me saying “no” and defending my own screen time by saying “I’M WRITING. I’M CREATING CONTENT INSTEAD OF PASSIVELY CONSUMING MEDIA.” I told my son if he wanted to hand write his own story and then come type it up, he could. So that’s why he’s in the background of the picture. 

Here’s what he wrote: 

“Cars tv… I love cars cars are cool I love cars so so so so so so so so so so so so so so so so so so so so so sooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooo* (eleven lines of o’s have been omitted) 

much cars!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!”

I also had to tell him “Stop licking chairs.” 

And then I had to ask my husband to take a break from his work so I could finish a blog post. I didn’t even have the mental bandwidth to figure out how to get two images to post side-by-side. Here’s a reminder for when I berate myself for not having a long detailed blog with regular content. And not getting through the entire stack of books (there are another four that I put on my TBR list for this summer).

CAN BULLET JOURNALING SAVE YOU?

Scrolling through Instagram for the thousandth time today, I see that the New Yorker posted this article from 2019 titled “CAN BULLET JOURNALING SAVE YOU?” If you needed an example of how things have changed since September 2019 and the problems you might have had then that could be SAVED BY BULLET JOURNALING- here you go. I don’t know why they posted this today when people are asking, oh I don’t know “What can save me from a global pandemic?” BULLET JOURNALING “What can save me from an evil dictator in the White House flushing the country down the crapper?” BULLET JOURNALING “What can save me from institutional racism?” BULLET JOURNALING. “What can save my child from regressing academically and socially while schools are closed?” BULLET JOURNALING. 

These were the thoughts in my head when I decided to go ahead and make hummingbird food again. The feeders have been sticky and moldy for probably at least a month now- the hummingbirds still come around to check whether I’ve gotten my shit together yet and are disappointed every day. So I go to turn on the microwave to heat up the water and turn it off immediately- because Michael has his air conditioning on and running both at the same time MAKES THE POWER GO OUT. I put a kettle on. As I’m waiting for the water to heat up, I see that there’s a packet of hot chocolate mix left on the counter from yesterday when the 6 year old asked to make ice pops because Sid the Science Kid’s parents had time to do that with him and all we had to make ice pops was hot chocolate. I pick up the packet and it’s all wet. I don’t know why. I smell it… doesn’t smell like anything so I’m assuming it’s only water. I go to throw it away and stop because HEY I PUT THE KETTLE ON. I read the directions on the packet and see that it instructs me to add 6 oz of hot water which is ONLY ⅔ of a CUP and that is EXACTLY WHY YOU GREW UP WITH FLAVORLESS HOT CHOCOLATE. Because your mom thought there was enough hot chocolate mix to fill up a regular mug. Who drinks ⅔ of a cup of hot chocolate? NO ONE. Maybe babies. But they won’t because IT WILL FOREVER BE TOO HOT so why bother. 

 My husband walks into the room and as I was explaining all of these things to him, he asked me if I needed to go to the hospital. Because I was laughing and crying at the same time I guess. 

I am taking my car to get an oil change today which will mean that I might also get to pick up coffee at the nearby coffee shop where I remember typing out my musings onto my Chromebook to post on my blog which I haven’t posted anything on in a year. Why? Because this is the kind of stuff my head is producing. And I think maybe it’s not the greatest idea to throw up whatever my thoughts are onto the internet- even though I think I also believed that that’s actually how my favorite writers write. David Sedaris made this video about how you should consider keeping a diary but also “not sharing” so I kept a diary for a while on my Chromebook and didn’t share it and I gave that up too… I think the audience (even if it’s an imagined audience or a very remote potential audience) is motivating to me. Or it’s not. Writing about not writing is the most boring subject ever so I digress from this post that is nothing but a digression. 

ANYWAYZ: My husband has also started a blog about the random quarantine road trips we’ve been doing and has just been spending hours on his computer WRITING ON HIS BLOG. THE NERVE. HE’S JUST WRITING A BLOG. Which I proofread. WTH? I’M THE BLOG LADY! Maybe bullet journaling can save me.

channel your inner therapist

I’ve been doing this writing exercise off-and-on for the past two weeks and it’s been incredibly helpful- so I’m sharing it.

Like most of the awesome things I find on the internet, I got it from Joy the Baker’s “Let it Be Sunday” post. She linked to this article which outlines the writing exercise. I’m not going to go into the whole thing bc you can read it yourself, but in case you don’t want to go read it yourself, here it is in a nutshell: You make three columns. In the first one, you write down something you’re telling yourself that you suspect might be nightmare-fuel anxiety talking (I label this column “cray cray”- you can do something less judgmental). In the second column, you check your cray cray thoughts against a list of common “cognitive distortions” and identify which ones you’re doing. Then, in the third column, you reframe your crazy talk into something much more rational. Like the article says, it takes about 5 minutes. What’s great though, is that for me, it has a generalizing effect. I find myself checking the crazy talk, identifying cognitive distortions and reframing my thoughts all in my head- no writing supplies needed.

And “cognitive distortions,” in a nutshell, are common thought patterns people get into which are not productive and lead to anxiety/depression/frustration. The ones I’m usually guilty of are black/white or polarized thinking, overgeneralization or my continual parade of shoulds. I’m picturing this now as a parade of people with protest signs that all start with “You should…” like “You should stay off Facebook” and “You should read more” and “You should keep up with the dishes better” and “You should smile more” (I seriously caught myself thinking that this week- like I mansplained my effing self, really????).

The article has a good list of 10 cognitive distortions- but if you google “cognitive distortions,” you’ll find other versions of the list… or bigger lists (do we need any more? I don’t know if the list of 50 is helpful, guys).

Here’s a picture of my journal from just now making myself be okay without having to do “something productive” every single moment of my spring break:

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I loovveee how simple it is- and that you can do it any time you have paper, pen and a list of cognitive distortions… Do they make a pocket-chart version of those? Perhaps a cross-stitch sampler pattern? Maybe I’ve finally found my Etsy niche……..