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 

The Best Things in Life are Fifty Bucks

I’m a couple days behind on the current mindfulness challenge thing most recently put out by Tara Brach and Jack Kornfield. I’ve been listening to their 10 min talk and guided meditation most days in the parking lot before I go into work. Today’s was about impermanence- and I specifically remember an analogy about someone with a special drinking glass who says “To me, it’s already broken, so each moment I have with it is precious.” Because everything will change- everything will be different… every person we know will pass away also… that makes them precious. It’s morbid- but if we think about how we’re all going to be dead… we’re all already dead… it makes all the moments precious. 

In addition to this daily meditation practice, I also decided to re-read a section a day of Thich Nhat Hanh’s “Peace is Every Step”. There’s 70 sections so that will take me through the first 2.5 months of the year. Today, with this combination of the talk about impermanence and the reading Thich Nhat Hanh’s book, I was specifically thinking about how we’re not going to have Thich Nhat Hanh here with us forever. I thought specifically about his impermanence. 

And today is the day he left us.

He had a lesson specifically for me today. 

I was thinking about this even more when my daughter asked me to put on the “Fifty Bucks” video. And so I did… I watched all of your faces, you precious, precious beings. 

The “Fifty Bucks” video was created by my husband the Christmas after my dad died. He did it because I was going to have a hard time with Christmas that year. It was a virtual surprise party that predates Zoom. It was a massive project that involved hours of work not just from him, but from Leigh Wulff- the magical editor- and over 90 of you lending musical talents, dancing talents, creative talents, comedic talents… there were props and costumes!!!… My family, my friends, friends of Michael’s, friends of friends… my cats… your cats… And watching this tonight six years later, I became very aware of how happy I was to be sharing this particular window of time on the planet with you all. 

From TNH’s book “You are here: Discovering the Magic of the Present Moment”:

“Birth and death are only doors through which we pass, sacred thresholds on our journey. Birth and death are just a game of hide and seek. So laugh with me, hold my hand, let us say goodbye, say goodbye, to meet again soon. We meet today. We will meet again tomorrow. We will meet at the source at every moment. We meet each other in all forms of life.” 

Love to you. Thank you for reading what I write. Thank you for being in my video and brightening a time of darkness for me. I’m happy we’re here.

Your Holiday Gift Guide from an SLP: (Surprise!) Every toy supports language development 

Wouldn’t it be so great if you could buy a toy that would make your child talk more just by having it in your house? Something you could sit them in front of and it would teach them some important skill while you do dishes? Don’t get me wrong- I need my kids to be occupied while I do housework tasks (Um or read a book or write a blog post). Not judging at all- but I want you to see through some marketing BS that comes out this time of year in the form of educators- including speech therapists- making lists of recommended toys. Literally every toy is educational. The way you enhance and enrich a playtime activity is not so much about the toy you use but your presence, your interaction and (most important) your child’s interest. Think about the difference between leaving your child with an artisan-crafted wooden shape sorter painted in muted earth tones with organic beet paint or whatever- and sitting down with your child and talking about the shape-sorter as you play with it. Same goes for the light-up noisemaker toys- you can sit down and talk about those too. What makes a play activity more instructive and interactive is your instruction and your interaction- not the actual toy. What kind of toys should you get your kids? Stuff they’ll be interested in and want to play with. You add language practice, vocabulary, social skills, etc when you interact with your child doing something he/she enjoys. 

I have a bone to pick with this idea that toys have to teach the ABCs or some other “academic” concept. It implies that “just playing” isn’t enough or isn’t as worthwhile if the child isn’t being “taught” something or “working” on some skill that will eventually become marketable. Playing is how kids learn things. Playing is how kids communicate- how they connect with caregivers and each other. It’s how they practice being in the world. I think we adults, who have to do things we don’t like all the time (that’s what we call “work” right?) get kinda nervous about the idea of our kids whiling away an afternoon doing “whatever they want.” Maybe they’ll like it too much and just do it all the time and they have to LEARN that life is more about doing things you don’t want to do and then they’ll become a “failure” because they played video games instead of doing math.

Doing “whatever you want” is how you figure out what you like to do. And guess what? You learn more when you’re doing something you’re interested in. 

This fear of play/enjoyment/pleasure is rampant in school- which is where all this comes from, right? We feel compelled to buy toys for kids that will end up helping them in school. School is very much about rewards and punishments. It’s about making kids “work” so they can “learn” so they can “earn” things they actually “want.” Because we think that’s the way the “real world” is… so that’s how they have to spend their childhood. So some teachers/educators/therapists get nervous when kids start having fun… The activity’s value becomes directly linked to how much suffering the child has to go through to accomplish it. The more “work,” the better. So play, fun, pleasure, etc. becomes currency- they see a kid express an interest in something and it gets held hostage and used in exchange for the kid doing “work” (“Oh you like the book? Want the book? Finish this puzzle.” **this is unfortunately a real life example of a kid expressing interest in a BOOK at school and not being allowed to look at it until he complied with an adult command). A kid getting to have fun/getting to do something he wants without “doing work” is a kid getting away with something. 

Most of my speech therapy sessions have become “play-based” and driven by the kids’ interests. And what I don’t really have to deal with any more is “behaviors”… That word is what we used to use to talk about kids who wouldn’t comply with our requests… I just don’t care (almost) at all about compliance anymore. I prioritize communication- and if I have a kid communicating to me (either using their words or by walking away from me or by throwing the materials across the room) that they don’t want to do whatever elaborate lesson I’ve planned for them, then it’s my obligation to honor their communication. If I frame it like a behaviorist, I’ll say that I want them to form positive associations with communication (e.g. I get my needs/wants met when I communicate. I have more control over my environment when I communicate. My communication has power.). If my overall goal is that they communicate more or communicate more effectively, I’m going to start with the real-life communication they’re giving me now- I’m not going to ignore that in favor of them cooperating with my directions just because I said so. 

So anyway- if you care at all about my professional opinion as a speech-language pathologist when it comes to choosing toys to buy your child this holiday season, here’s my advice: Choose things that you know will interest him and make a commitment to play with him. And be prepared for him to not show interest in the thing you paid $$ for- opting for the box it came in or some other household detritus. Because it’s not about the toy. If your intention is to support your child’s learning, it’s more important to see their interest and encourage it, cultivate it, expand it, honor it, build on it. Their interest is the spark of all learning and it should be held precious. You can skip the toy lists. 

P.S. There’s a quote floating around the internet that gets attributed to Einstein- some variation on “The highest form of research is play.” Spoiler alert, it wasn’t Einstein. In a 1962 journal article, a guy named NV Scarfe wrote “The highest form of research is essentially play” and then he goes on to quote Einstein “The desire to arrive finally at logically connected concepts is the emotional basis of a vague play with basic ideas. This combinatory or associative play seems to be the essential feature in productive thought”  which sounds more like what I’d imagine Einstein would sound like. So it’s the envious scarf guy who should get that attribution, not Einstein- here’s a link to a reprinted version of the presentation he gave: https://www.playaustralia.org.au/sites/default/files/LibraryDownloads/Play%20is%20vital%20to%20Childhood%20Professor%20N.%20Scarfe%2C%20Vancouver.pdf
Thank you to “Quote Investigator” who sussed this out for me: https://quoteinvestigator.com/2014/08/21/play-research/#note-9611-2

Here’s a visual aid- or whatever the opposite of a visual aid is:

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).

Gratitude practice counteracts your natural negativity bias

Here’s yet another post on the internet about how you should have a gratitude practice and that it “really works.” I’ve made my family say 3 things they’re grateful for at dinner (like Thanksgiving but every day) for a couple years now, but I’d like to incorporate a deeper gratitude practice into my life. Because am I ever aware of my own negativity bias. 

As I’ve learned from the huge pile of books I’ve read about various topics in the realm of psychology and/or self-help, we humans have a brain hard-wired to focus on negative things. It’s an evolutionary thing- it’s helped us as a species to pay attention to all the things that would cause us harm (like I don’t know… saber-toothed tigers) but, in the modern world where we’re not constantly in danger of being eaten, it’s not something that necessarily serves us. It’s negativity bias that makes us ignore the 9/10 positive comments we get on our social media post and ruminate over the one troll. It’s negativity bias that causes us to remember, sometimes at 3am, that dumb thing we said like 7 years ago. It’s negativity bias that makes it really hard to overcome bad first impressions. It’s negativity bias that makes us constantly think about all the bad things that could happen and then we get busy trying to prevent #allthethings and we completely lose sight of the present moment. 

So maybe, for a second, don’t think about all the merchandise that comes with gratitude practices and think about this: Making a daily habit of listing things that are positive in your life might actually help you build new neural pathways that will cause you to pay more attention to things that are positive- which can counteract your natural, evolutionary, hardwired negativity bias. And there’s lots of research that says people who do this (people who “practice gratitude”) are happier in general. Here, let me google that for you. 

Here’s where the typical blogger is going to introduce a 30-day challenge or something and offer to send you a guide in exchange for access to your email address for all of time. I feel like that makes it into a Big Deal (it is a big deal… but not a big deal time commitment…). Try making a list of all the things you’re grateful for, and then try making a list of 3-5 things for the next couple of days and see if something changes. Pay attention to what you pay attention to. I’ve found that I taste my food more, enjoy my conversations more, notice things like particularly pretty trees or clouds… and reframe things like the messy kitchen (I have a kitchen with food to clean up…). Happy gratituding 🙂

(have I mentioned I need a graphic artist?)

If you want to support autistic people, don’t use electric shock on them

File this under “things I shouldn’t have to say.”

I was happy to see this article from a mainstream news source shedding light on the Judge Rotenberg Educational Center which has been using “graduated electronic decelerators” (GEDs) on their students since the 1970’s. The FDA banned their usage last year. Already nauseating that it took that long- but the thing is, it didn’t stop. The center is using COVID as an excuse to keep on with business as usual and the shocks are still happening.

So here’s my thing… That center is a torture chamber and should be closed immediately for behaving like a 1970’s mental institution, but what I’m missing is the big position statement from ABA condemning them and their practices because OMG why would you risk being associated with something so medievally behind the times?

Words matter- and it’s important that the foundations and companies you support stand up for human rights, right? Remember when every company you had an email subscription to sent you a message affirming that Black Lives Matter? Speech pathologists got really angry at the American Speech and Hearing Association’s initial statement about racism since it wasn’t strong enough- we spoke up and they changed it.

The NBC article above does not mention ABA, but the use of corporal punishment to control behavior is absolutely something that is associated with ABA- and ABA’s history includes the use of electric shock to “control” behavior. I would, again, expect to see an official ABA statement is about how electric shock is torture… how it’s unethical… how it should never be used… how any institution condoning its use is doing so without the blessing of a national association… I’m not seeing that. Not only am I not seeing that, I AM seeing a “symposium” presentation slated for May 30th, 2021 at the Association for Behavior Analysis International Convention titled “Challenging the FDA Ban on Electrical Stimulation Devices” with speakers from the Judge Rotenberg Center.

The use of electric shock by a person in power is NEVER okay under any circumstances. ABA’s public silence about (and quiet inside support of) electric shock is indicative of a core belief- that when it comes to ethical treatment, different rules apply to autistic individuals. The summary of this presentation starts by saying “Aversive conditioning devices have been utilized for treatment refractory self-injury, aggression, and other problem behaviors for over 50 years” like that’s a defense of their continued use. An industry that makes exceptions for physical abuse of CERTAIN PEOPLE is one that needs to be stopped. Now.

There is a social media campaign going on right now that I encourage you to participate in. Take a picture of yourself with a sign  that says “Judge Rotenberg Center #StopTheShocks !” and make sure you hashtag it #stoptheshocks and also #judgerotenbergcenter 

And PLEASE let me know if there are other ways I can help amplify the message here- this is absolutely a human rights issue.

If you want to support autistic people, stop demanding that they act less autistic (and start by letting them stim)

An autistic person faces a number of challenges- especially in the areas of language difficulties and sensory processing difficulties. An autistic person also faces a number of challenges which are primarily due to most non-autistic people not understanding autism. Some of this is general ignorance but a lot of it is leftover from this idea that autism is a thing that needs to be cured and autistic characteristics are “symptoms” of a “disorder” and therefore need to be “treated.” They’re “challenging behaviors” that need to be “extinguished.” 

So a big one that we need to leave them the heck alone about is “stimming.” 

“Stim” is short for “self-stimulatory” behaviors we see autistic people do. It’s part of the DSM criteria for an autism diagnosis- “restricted, repetitive behavior”. This can look like hand flapping, rocking, repeating words/phrases/song lyrics, vocalizations, shaking/wiggling toys or other objects, or other repetitive tinkering with things… The description of these behaviors can significantly differ depending on who’s doing the describing. Here we have an ABA therapist who justifies targeting repetitive behavior because it keeps kids from learning. Here we have a person who surveyed 31 actually autistic people about stimming and, spoiler alert, they don’t think it’s something that needs to be eradicated. Autistic people describe their stimming as something they do to release anxiety, something they do out of joy or excitement and also as a coping mechanism for boredom. Maxfield Sparrow writes “The number one reason we stim is simply because it feels really good.”  He goes on to write “Why is it so important to let a person keep their stims? You might as well ask why it is so important to let a person keep breathing. Stims are the way our bodies interact with the world. We need our stims, and we will suffer without them.” Please click that link and read the whole article- it’s important information but it’s also a joy to read- a window into how autistic people experience the world in an incredibly positive way. 

But for those who don’t understand what it is, stimming looks “weird.” A woman in this trailer for a project called “Stim Your Heart Out” talks about how knitting on the bus causes people to want to talk to her and be around her- but if she does knitting-like movements with her hands and no yarn, it does the exact opposite. People are freaked out by her. And that’s another reason people cite to try and stop their autistic loved ones from stimming- it looks weird and they don’t want them to be bullied, misunderstood or made fun of. It’s a legitimate concern- not just because of the social ramifications but because of safety reasons in a country that routinely kills black people in stops that happen because someone says they’re “acting suspiciously.” I think specifically of Elijah McClain- but there are other examples. This study looks at the media coverage of police killings and shows that the word “disability” is often left out of reporting- and also that a victim’s “mental illness” (a term that an uneducated or deliberately manipulative person might use in place of “autism”) is included in a justification for use of force. The study suggests that 30-50% of those killed by police have a disability. 

So- if our autistic community members have this thing they do- that they need to do- that doesn’t hurt anybody in and of itself**… do we force them to stop so they appear normal? Do we insist that they just sit down and be quiet because our school system requires them to do that in order to “learn”? Do we just accept that law enforcement will forever think that “looking suspicious” is grounds for the use of force? Or can we instead inform the general public of what stimming is and make our community a place that accepts autistic people’s needs? Can we celebrate stimming? Can we imagine a classroom that includes time and space for stimming? Can we educate law enforcement about stimming? Expecting autistic people to suppress a normal biological/physiological/psychological process is both unfair and unnecessary. 

**That said- there ARE some good reasons to redirect or change a stim. Maxfield Sparrow lists three: 1. when the person’s stim could cause injury to themselves or others, 2. When the person’s stim is keeping them from doing something THEY want to do or 3. When the person’s stim might cause a police officer to shoot them or another temporary environmental reason that puts them in immediate danger. “Because it looks weird” or “Because we refuse to make accommodations” are not good reasons. We need to know better and do better. Autism Acceptance includes making space for the needs of our autistic community members. Stimming is a fundamental need.

If you want to support autistic people, reject ABA

TW/CW: ABA, torture, abuse, ableism, conversion therapy

This is so loaded, I gotta take a deep breath… 

“ABA” stands for “applied behavior analysis” and it continues to be regarded as the gold standard “treatment” or “intervention” for autism. The methods are based on the theories of BF Skinner (1904-1990) whose work centered around behavior modification using rewards and punishments. You reward or “reinforce” a behavior you want and you punish a behavior you don’t want. O. Ivar Lovaas (1927-2010) is credited with being the “father of applied behavior analysis (ABA)” and creating a systematic method of behavior modification based on Skinner’s theories. As you can read about on Appliedbehavioranalysisprograms.com, his behavior modification methods first targeted homosexual “behavior” of young boys in “conversion camps” that he established. He then expanded his methods to target modifying the behavior of autistic children. Those methods included corporal punishment, screaming in kids’ faces (there are pictures), withholding of affection and shock treatment. Instead of distancing themselves from this monster- and I don’t think it’s hyperbole to call him that- ABA establishments continue to bear his name. People defend him by talking about how his methods were just as bad / comparable to the methods of others in the field of psychology at the time. How that kind of excuse continues to fly in this cultural climate where people are publicly shamed and/or fired for posting insensitive tweets 10 years ago is beyond me, but here we are. Not only is he not exiled, his core methods/theories (although toned-down and reframed in most cases… but still not in others) are now replicated by behavior therapists as part of a billion-dollar industry. 

Today, 50 years or so later, ABA services are covered by major insurance companies. ABA services are provided to students in public schools through intensive sessions and reinforced many times by 1:1 aides who serve to uphold the “behavior support plan.” Parents of autistic children receiving new diagnoses are advised to immediately put their children into ABA services- sometimes for 20-40 hours a week. The Autism Speaks website claims

“More than 20 studies have established that intensive and long-term therapy using ABA principles improves outcomes for many but not all children with autism. “Intensive” and “long term” refer to programs that provide 25 to 40 hours a week of therapy for 1 to 3 years.”

(Ugh… so if you do 25-40 hours a week for 1-3 years, you might get an “improved outcome.” And that vote of unconfidence is from ABA’s biggest and loudest supporter…)

If I ever have the time, I will be writing more about the “efficacy” of ABA therapy according to available research (spoiler alert, it’s scant and inconclusive), but what I believe is the strongest argument in support of rejecting all ABA practices outright is the feedback we are getting from the autistic community. ABA attempts to change “problem behaviors” and this is often how their “success” is measured (they don’t throw themselves on the floor when they want something anymore=success). Those measures do not include or acknowledge the side effects reported by people who have been subjected to these treatments. In a study titled “How much compliance is too much compliance: Is long-term ABA therapy abuse?” the author found that 

“Compliance, learned helplessness, food/reward-obsessed, magnified vulnerabilities to sexual and physical abuse, low self-esteem, decreased intrinsic motivation, robbed confidence, inhibited interpersonal skills, isolation, anxiety, suppressed autonomy, prompt dependency, adult reliance, etc., continue to be created in a marginalized population who are unable to defend themselves.” 

In Invisible Abuse: ABA and the things only autistic people can see” , CL Lynch describes how the “new” ABA is still harmful. She includes several videos of typical current ABA practices. Her criticism is similar to those of other autistic authors- that ABA seeks to make an individual appear less autistic (by reducing harmless stimming, forcing eye contact, etc.), that it demands blind compliance, that it ignores reasons for “problem behaviors,” that it encourages autistic people to ignore their sensory needs instead of advocating for them and ultimately that their feelings don’t matter. 

In “On hurling myself into traffic to avoid ABA therapy” by alexanderstreasuresblog , the author provides a first-hand narrative of his ABA experience including forced eye contact and the labeling of any of his protests/refusals as “scripting” (and so therefore, not valid and counted as a “problem behavior” according to the ABA therapists). 

In the post titled “ABA” from the blog “Unstrange Mind” by Max Sparro we are given a breakdown of the many problems with ABA as well as an account of personal experience. Please read the quote from the post below: 

“A therapist might tell you that “a little crying” is a normal thing, but I was once an Autistic child and I can tell you that being pushed repeatedly to the point of tears with zero sense of personal power and knowing that the only way to get the repeated torment to end was to comply with everything that was asked of me, no matter how painful, no matter how uneasy it made me feel, no matter how unreasonable the request seemed, knowing that I had no way out of a repeat of the torment again and again for what felt like it would be the rest of my life was traumatizing to such a degree that I still carry emotional scars decades later. It doesn’t matter whether the perpetrator is a therapist, a teacher, a parent, or an age-peer: bullying is bullying.”

The article “Why No Autistic Child Should be in ABA Therapy” by Shannon Des Roches Rosa provides yet another autistic perspective and an overview of the issues with ABA and how we need to change the way we support our autistic community: “…autistic children need supports and accommodations, not interventions based on non-autistic child development and conversion therapy.”

I have been researching this topic for over a year now and I keep hoping that there’s something I’m missing. I keep hoping the situation isn’t what it looks like. Because what it looks like is that people are making money compelling vulnerable parents to enroll their autistic children in absurd amounts of therapy hours- services which do not reliably meet their subjects’ target goals (which are problematic in and of themselves). These therapy services are based on archaic principles that the field of psychology abandoned long ago and methods created by an abusive monster conversion-therapist. These therapy services are performed on a marginalized minority of individuals- who have a PRIMARY DIFFICULTY EXPRESSING THEMSELVES VERBALLY- making them the most vulnerable population to abuse because they either can’t protest, or their protests are labeled as “problem behaviors.” I am not okay with this reality- and I keep doing more research hoping to find evidence that I’m wrong, but the more I learn, the worse it looks. This is a human rights issue that we need to, as a first baby-step, make the general public aware of.

More to come.

(I need a graphic artist, clearly)

If you want to support autistic people, do not use the puzzle piece

**MAJOR TRIGGER/CONTENT WARNING: This post links to articles which use ableist language/outdated vocabulary, and highly offensive anti-autism propaganda videos

The ubiquitous symbol for “Autism Awareness” has been the puzzle piece. The puzzle piece symbol was created by the National Autistic Society based in the UK in 1963 and it originally looked like this:

(image credit- Autism Wiki https://autism.wikia.org/wiki/Puzzle_Piece_Logo ):

That’s a weeping child, for those in the back.

Helen Green Allison, a founding member of the National Autistic Society, attributes the puzzle piece design to a parent in the then-fledgling group. In this account**, she explains:  

“The puzzle piece is so effective because it tells us something about autism: our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in’. The suggestion of a weeping child is a reminder that autistic people do indeed suffer from their handicap.”

The puzzle piece ribbon was adopted by the (US-based) Autism Society in 1999. Autism Speaks was founded in 2005 and uses the puzzle piece as their official logo. It used to be all-blue, some speculate, because they assert that autism is more common in boys (that’s a whole other topic beyond the scope of this post). Of all the organizations related to autism, Autism Speaks is most likely the one that you’ve heard of and you might assume that whatever they’re doing is probably good for autistic people. Here’s where I’ll remind you again to please listen to autistic people before you move forward with that assumption.

Autism Speaks has, from its beginning, approached autism as a disease-to-be-cured. It’s moving at a turtle’s pace to get away from that mindset and is really only doing so due to social media pressure.  The organization has put out propaganda that has served to frighten parents of young children into seeking intensive treatments or else face a lifetime of heartbreak because of autism. Here’s a video they put out that includes a mother-with her autistic daughter in the room- talking about wanting to drive off of a bridge.  Here’s another one called “I am Autism” talking about how autism knows where you live and is going to bankrupt you and ruin your marriage, etc. Here’s the transcript if you, like me, can’t stand even a few seconds of it: I debated over whether to include links to these videos in this post because they’re so offensive- but I think it’s unbelievable that an organization with so much visibility would produce statements like this and it’s important that people- especially potential supporters/donors are aware of it. Many autistic people refer to Autism Speaks as a “hate group.”

So back to this puzzle piece… Imagine seeing the logo of the group that has served to misinform the general public about your identity, forcing your caregivers to subject you to ill-informed treatments… how would you feel about it? The puzzle piece is also considered to be generally infantilizing- as if autism affects only children or renders all autistic people childlike into adulthood. The puzzle piece, now, is a litmus test. Its use means an organization has not sought out the actual autistic perspective (bad)- or they are aware of it and are discounting it (worse). The symbol embraced by the autistic community and the neurodiversity movement is a rainbow infinity symbol, meant to represent the diversity of the autism spectrum(see my shirt below from Peachie Speechie🙂

Again, if you’re going to use April to support autistic people, I will ask you to please seek out #actuallyautistic perspectives by searching that hashtag. You can easily find autistic perspectives on the puzzle piece symbol by doing a quick google search, but here is one article I found that lays out the arguments against using it particularly well: altogetherautism.org.nz/autism-no-puzzle-nothing-wrong-with-us/ Here’s another one with lots more about why the puzzle piece is offensive- as well as symbolic colors to wear in support (#redinstead or gold) instead of blue: https://intheloopaboutneurodiversity.wordpress.com/2019/03/20/the-ableist-history-of-the-puzzle-piece-symbol-for-autism/

If You Want to Support Autistic People, Please Start By Listening to Autistic People

We need to talk, guys. This pandemic has made me re-evaluate almost everything- and there’s something I need to let you in on that I can’t be silent about anymore. It’s big and I’m not done learning about it but I also can’t wait until I feel like I’m “done” learning to start talking about it. Because April is basically here and when you start posting “autism awareness” puzzle pieces, I’m gonna have a fit.

Before I even start talking about “it,” I need to state how important it is to not just include, but hold paramount, the perspectives of people you are making policies about, making treatment plans for, and/or making awareness campaigns for. Also – when people of whatever community/affiliation/culture/identity/etc ask that you refer to them a certain way, you must listen to them. Why wouldn’t you? If you claim to want to support/help a group of people, I would think you’d care about what they have to say and honor their preferences when it comes to what to call them.

So, when you want to participate in April’s “Autism Awareness Month,” I implore you to please seek out and listen to the perspectives of autistic people first. I say “autistic people” because, from the many accounts I have read/encountered, the majority of autistic people prefer “identity-first language.” If you’re someone who works with autistic people, you may have been taught to use “person first” language and say “person with autism” or “person on the spectrum.” This “person first” language comes from the 80’s campaigns to destigmatize people suffering from AIDS- to separate them from their diagnosis. Other examples of “person-first” language- person with diabetes, person with cancer, person with arthritis. Because it would be jarring to be referred to as a “diabetic person,” a “cancerous person” or an “arthritic person.” Diabetes, cancer and arthritis are diseases people suffer from.** Person-first language implies a condition for which a cure is needed/desired.  Autistic people see autism as part of their identity. Autism is not something to be cured. You wouldn’t refer to a gay person as a “person with homosexuality” unless you think there’s something wrong with homosexuality (which you don’t right? Don’t be an ignorant ass, please. If you’ve gotten this far, you must be part of the choir to which I’m preaching, yes?).   

April has been “Autism Awareness Month” since the 1970’s. You will recognize the puzzle piece symbol and also possibly remember the “Light it Up Blue” thing where they put blue lights on buildings at night to “increase awareness.” The Autism Society claims the puzzle-piece ribbon as their trademark and the creation of Autism Awareness Month. The autistic community has MANY things to say about April. The first of which is that it, at the very least, needs to be renamed “Autism ACCEPTANCE Month.” The push for this on social media has been so strong that the actual Autism Society that came up with the whole idea has released a statement that they’re renaming the month. They’re asking you to take the note. “Awareness,” like person-first language, implies a problem-to-be-solved- a disease-to-be-cured, an undesirable/unacceptable condition. “Acceptance” implies something you make accommodations for. “Acceptance” implies we see our fellow humans’ differences as just that- differences, not symptoms to be eliminated. “Acceptance” also means we see differences we can celebrate and value as a community.

I have a lot more to say about this and I’m planning on writing more- but I wanted to get at least this part out there before April hits. Please, please, please, if you do nothing else for Autism Acceptance Month, search any of the socials for the hashtag #actuallyautistic and wait for your mind to be blown wide open. This is a marginalized community of people that is on the verge of what I think will be a gigantic revolution. If you have more time and want to educate yourself about this perspective, check out these websites:

Autistic Self-Advocacy Network: https://autisticadvocacy.org/

Neuroclastic: The Autism Spectrum According To Autistic People: https://neuroclastic.com/

Thinking Person’s Guide to Autism: http://www.thinkingautismguide.com/

**EDIT: It has been brought to my attention that diabetes is not a condition that has a cure- and there is an emotional toll that comes with the general society thinking it’s a condition which was brought on by one’s behavior and something that can be eradicated. The question of whether to use person-first or identity/condition/diagnosis-first language when referring to diabetic people / people with diabetes is a subject of debate among those that have it. As a universal rule, you should use whatever language a person prefers to refer to themselves no matter what. This post is about the message I’ve received from the online autistic community to use identity-first language as a default and only switch if the person in question asks you to do so.