What violates a UN convention, fails a US Department of Defense analysis, and is hated by those it’s supposed to “help”? ABA
Why does the government fund the torture of autistic children?
Note: This is a republication of a Medium blog I wrote in August 2022. I’m not posting on Medium anymore, and I’m gradually bringing my best Medium work here. I was 38 years old at the time of writing it.
Content warning for the abuse of autistic children. Especially if you were abused this way, this post may be a trauma trigger.
My friend Kemal Ahmed is the Ontario NDP Disability Committee co-chair. He’s also an autistic man.
I have long since given up on both the federal and Ontario NDP as being any good whatsoever when it comes to fighting for “progressive” values. I’m autistic as well, and no political party that ignores and attacks disabled people so much can possibly be “progressive” in actuality. True “progressives” listen to marginalized groups, and autistic people certainly are one.
Anyway, Mr. Ahmed asked me to write a letter to Ontario NDP MPP for Thunder Bay Superior North and disability critic Lise Vaugeois about why ABA is bad.
ABA or “applied behavioral analysis” is the equivalent of gay conversion “therapy” for autistic kids. In the province of Ontario, like many other places in the developed world, ABA is the one “therapy” that’s dealt to autistic kids if they’ve been diagnosed. Brainwashed parents whine about how desperately the provincially funded ABA waiting list must be reduced so their precious darling can be tortured into compliance. The Ontario NDP thinks funding ABA is “progressive” and they frequently attack our far right “Progressive” Conservative Party, led by Premier Doug Ford, about it in Queen’s Park. (Yes, Doug Ford is evil. So is the Ontario NDP for pushing ABA. So are the Ontario Liberals. So are the Ontario Greens for turning their backs on autistic adults. It’s possible for all of these entities to be evil, simultaneously!)
Although I quoted a lot of text from academic reports and the writing of other autistic people, Mr. Ahmed thought my letter was great. So I decided to share it with my followers on Medium.
If you’re autistic, suspect you’re autistic, or know autistic children, please share this post with them.
Alright, onto the letter I wrote this morning!
To Lise Vaugeois on why supporting the ABA industry is the opposite of “progressive”;
You may think that ABA is “autism care” and funding “treatment” that thousands of parents are crying for is the socially progressive thing to do, and something you should support as the ONDP’s disability critic. If you actually care about autistic children, here’s what you need to know.
My name is Kim Crawley. I’m a 38 year old autistic woman. I live in the Etobicoke Lakeshore riding, in an overpriced lakeshore condominium apartment. But I’m financially independent, I live alone, and I have a cybersecurity research career that makes my overpriced condo affordable to me. In that respect, I’m very lucky because I know how unaffordable housing is for the majority of Ontarians.
I received absolutely zero “autism care” over the course of my childhood and adulthood. So there goes the myth that autistic children need ABA or else they’ll be dependent on their parents for life or whatever. But I could have benefited from having my autistic and ADHD brain recognized as a kid, and if I had patience and compassion from my teachers. I spent my teens and my early adulthood in poverty and frequently suicidal. But patience, compassion, and understanding is not what ABA is. And I’m much better off having received nothing than ABA.
When you think about all of the parents begging for ABA funding, imagine if they were begging for their children to go through gay conversion “therapy” instead. If you think I’m being hyperbolic, I assure you that I’m not. Gay conversion “therapy” and ABA have remarkable parallels.
From Jake Pyne, published in the Canadian Journal of Law & Society, via Cambridge University Press:
“At the University of California, Los Angeles (UCLA), in the 1960s and 1970s, psychologists operated two child behaviour modification programs side-by-side: one aimed at eliminating behaviours deemed “feminine” in male-bodied children (conversion therapy) and one targeting so-called problem behaviours among autistic children (now known as applied behaviour analysis or ABA). The clinical head of the autism treatment, O. Ivar Lovaas, referred to his work as ‘building a person’ (Chance Reference Chance 1974, 76). Though the treatment of autistic children was markedly more brutal, both programs shared one vision — to make the children ‘indistinguishable’ from others (Lovaas Reference Lovaas1987, 8; Rekers and Lovaas Reference Rekers and Lovaas1974, 186).
Decades later, these treatments exist in radically incommensurate legal contexts. In Ontario, lesbian, gay, bisexual, transgender (LGBT) conversion therapy was banned for minors in 2015,Footnote 3 while the following year, ABA received $333 million in government funding (Ontario 2016). Indeed, all ABA-related legal challenges in Ontario to date have sought to compel more rather than less behaviour modification. While many autistic self-advocates refer to ABA as autistic conversion therapy and demand it be seen in the same immoral light (Sequenzia Reference Sequenzia2016), ABA is not only legal, but legally mandated for provision in some educational settings (Ontario Ministry of Education 2007).”
That’s right! Gay conversion “therapy” and ABA were developed by many of the same people, with the same purposes but for different marginalized groups. The philosophy is the same. Through “treats” and punishment, gay children or autistic children are to be behaviour modified into not acting gay or autistic anymore. The thoughts and feelings of gay children and autistic children are completely disregarded because Behaviourism doesn’t think these children have thoughts and feelings. Everything is merely a behaviour to them. Or as O. Ivar Lovaas said:
“You see you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense — they have hair, a nose and a mouth — but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build a person.”
Absolutely horrifying. I assure you that I have feelings and I am a person. And so are autistic children.
This mindset taken to its extreme results in autistic children being physically tortured with electric shocks. From the Autistic Self Advocacy Network:
“The Judge Rotenberg Center (JRC) is a facility in Canton, Massachusetts. The Judge Rotenberg Center tries to control the actions of its students using aversives. The worst aversive the JRC uses is an electric shock device called a Graduated Electronic Decelerator (GED).
The GED is attached to the student’s body. Using a remote control, someone else can use the GED to give an electric shock to the person wearing it. The JRC has electrocuted people for:
Flapping their hands
Standing up
Swearing
Not taking off a coat
Noises or movements that they make because of their disability
Screaming in pain while being shocked
Use of the GED on someone has all kinds of bad side effects. It can burn skin or make someone unable to move. It can make people so scared they sometimes get mental health disabilities.
The JRC says that they need to use the GED on the people who live there because they struggle not to hurt themselves or others. But the JRC is the only place in the United States that uses electric shocks. All across America, people with the exact same disabilities as the people at the JRC get support that helps them with the exact same problems, without aversives.
People have been trying to get the electric shock devices used by the JRC banned since they were first made. The closest we have come to getting the devices banned is asking the FDA to do it.
The Food and Drug Administration (FDA) has the power to ban the electric shock devices used by the JRC. More than five years ago, it held a big meeting. It invited lots of people, including autistic self-advocates and the JRC itself. At that meeting, the FDA found that the electric shock devices were too dangerous to use.
Two years later, in 2016, the FDA created a proposed rule that would ban the devices. A “proposed rule” is a draft of a rule. The government asks the public to comment on the draft before anyone has to follow it. Lots of people commented on the rule about the GEDs.
In March 2020, the FDA finally released the final rule that banned the electric shock devices. Instead of following the rule, the JRC filed a lawsuit against the FDA so they could keep hurting people with disabilities. In July 2021, the DC Circuit Court overturned the ban. That means the JRC can keep using the devices. We’re still fighting to make sure that no one is tortured at the JRC.”
But you might be thinking, “That’s in Massachusetts. The ABA in Ontario is kind, gentle, and loving!”
First of all, ABAI, the organization that all ABA practitioners belong to, including those in Ontario, endorses the Judge Rotenburg Center. From the Autistic Self Advocacy Network:
“Torturers being allowed to present at a conference on the merits of their torture: that’s exactly what is happening at the ABAI conference this Thursday through Monday. ABAI is the Association for Behavioral Analysis International, the governing body of ABA practitioners. ABAI accredits ABA programs, which means they give the power to continue to do ABA based on meeting certain standards. ABAI has continued to endorse the Judge Rotenberg Center, and allows them to sponsor and present at their conferences.
One of the JRC’s presentations at this conference specifically focuses on the merits and ethics of the electric shock device. This means that ABAI is more than complicit in the abuse taking place at the JRC: they are actively endorsing these practices.”
Even supposedly “kind” “gentle” ABA is traumatizing to children. From C.L. Lynch’s “Invisible Abuse: ABA and the things only autistic people can see”:
“’But ABA has changed, people argue. ‘My ABA therapist never uses punishment. It’s all positive and reward-based.’
That is very true for many people. Most ABA therapists don’t set out to hurt children. And yet, despite making ABA therapy fun and positive, the underlying goals of ABA have not changed.
And it is these goals that, like gay conversion therapy, do long-term damage to the human psyche.
The reason parents and ABA therapists can’t see it as abusive is because they can’t see it from an autistic point of view…
Sure, the child was unhappy in the first video but the teacher was patient and she recovered, right?
And in the second video, they’re trying to teach children not to be disruptive, but they aren’t punishing the child or anything.
In all of these videos the children are never yelled at, scolded, shamed, or injured. They are praised and rewarded when they get things right, and often the kids seem to be enjoying the games.
No electric shocks, no aversive, nothing to make the experience traumatic, right?
Wrong.
Allistic people can’t see it, because they don’t understand how it feels to be autistic.
Let’s go back to that first video.
While they do not address it in the voice-over, if you watched it again you would notice how often the therapists take the children’s hands and fold them into the children’s lap.
You would also notice how often the child’s feelings are ignored.
In the first video, several of the children begin rubbing their eyes and looking tired, but they do not address this.
In the video with the girl in the supermarket, an autistic person can spot that she was getting overstimulated, exhausted, and was increasingly desperate to escape this environment.
In the video with the crying child, an autistic person wonders why she is so unhappy. Is she exhausted? Overtired? Overwhelmed? And when she stops fussing and goes back to doing the work, we can see the resignation on her face.
She isn’t happier. She’s just accepted that her feelings don’t matter and the fastest way to escape the situation is by complying.
In the last, you can see that ABA therapists deliberately ignore attempts to communicate or produce behaviours that have not been demanded by the therapist.
The child wants his mother’s attention. Would I ignore my child while trying to listen to what his doctor was telling me? Probably. But I would ‘shhh’ or pat his arm to let him know that he was heard, and I would be with him in a minute.
Notice that ABA doesn’t tell you to go back to the child after and find out what they needed or wanted.
And that is the problem with ABA.
Not the rewards, not the silly imitation games. The problem with ABA is that it addresses the child’s behaviours, not the child’s needs.
Think of those happy little children in that first video.
Now understand that sessions like this are not a couple of hours a week. ABA therapists recommend that small children between 2 and 5 go through 40 hours a week of this type of learning.
40 hours a week.
No WONDER those kids are rubbing their eyes.
My allistic (nonautistic) eight year old doesn’t do 40 hours a week of school. He goes to school from nine to three and gets a half hour recess and a half hour lunch. That’s 5 hours a day five days a week. 25 hours of active learning. And much of his class time is actually quiet reading, playing with learning materials, gym, or talking in a circle with his peers. So make it less than 20 hours a week of being actively taught.
Imagine asking double that for a preschooler.
Now consider that ABA is designed to ignore any protests the child might make.
ABA is not designed to consider the child’s feelings or emotional needs.
I’m not making a jump when I say that. You can go to any ABA website and read what they say and you’ll see that there will be no discussion of the child’s emotional welfare or happiness, only behaviours.
To ABA, behaviour is the only thing that matters. ABA considers autistic children as unbalanced kids who need to be balanced out, and if you balance their behaviour, they are fixed.”
Next, you might counter me with “Oh, but as an independently living cybersecurity researcher, you’re ‘high functioning.’ The ‘low functioning’ kids need ABA.”
Amy Sequenzia has spent her entire life being considered “low functioning.” She requires constant support and she’s nonspeaking. But she writes. A lot. Sequenzia on ABA:
“All children make mistakes and they have a chance to learn, they are kindly guided and taught. But to ABA proponents, Autistic children (and Autistic adults) are not allowed to err, or they are forever labeled a failure, or abused until they ‘get it right’.
I had some ABA when I was young, and I ‘flunked’. I want to say, I am proud of this ‘F’ in my life.
Of course, the ‘experts’ explanation for having failed to make me into a ‘tidy’, ‘appropriate’, ‘good girl’, obedient and compliant Autistic was my severe impairment, my extreme low IQ, my inability to learn or, as Lovaas would probably have said (and something a doctor actually said), my lack of human dignity.
I prefer my own assessment: if you want something from me, if you want me to do something, respect who I am, respect my way of doing things, listen to me and allow me to disagree and to find my own way.
ABA rejects all of this and that’s why I failed it.
I am, though, a very disabled Autistic who needs a lot of support, but who is completely independent in what I believe matters most: my thinking, my ideas, my decisions, my identity.
I am completely distinguishable from my peers, and proudly so.
I am free to say ‘no’ when I see fit. And I do.”
The US Department of Defense has found that ABA is of zero benefit, whatsover. From the Therapist Neurodiversity Collective:
“Over the past five years, the Department of Defense (DoD) has spent over $1.53 Billion on ABA services, serving almost 16,000 ‘individuals with ASD.’ The average cost per participant in FY2019 was $23,253. In 2016 Congress authorized funding for a report to examine whether the ABA services they have been paying are effective. Like all military health insurance services, these services are administered through TRICARE Insurance, health care program for United States uniformed service members, retirees, and their families around the world.
With 3,794 participants, this is the largest study ever conducted of ABA effectiveness. The 31-page report entitled, ‘The Department of Defense Comprehensive Autism Care Demonstration Annual Report 2020’ concluded that ‘ABA services are not working.’
Specifically, they state (page 24 of the report):
‘… these findings demonstrate that … the delivery of ABA services, is not working for most TRICARE beneficiaries in the ACD.’
‘… the Department remains very concerned about these results, and whether the current design of this demonstration, as well as ABA services specifically, is providing the most appropriate and/or effective services to our beneficiaries diagnosed with ASD.’
This was the second report prepared for Congress by the DoD reporting that ABA was not an effective therapy for individuals with autism. In last year’s report of over 709 individuals with autism, 76% showed no improvement after one year of treatment, 16% had improved, but that 9% were worse after a year of treatment. For both studies, results are based on the Pervasive Developmental Disorder Behavior Inventory (PDDBI; Cohen & Sudhalter, 2005). The PDDBI is a rating scale completed by parents, every six months.”
Most importantly, the vast majority of autistic adults have made it clear that all ABA is abuse. From “The autistic community is having a reckoning with ABA therapy. We should listen” by Ariana Cernius in Fortune Magazine:
“Autistic self-advocates have been speaking out about the harmful nature of ABA for a few years now, and they’re being largely ignored. They assert ABA is abusive and unethical because it aims to ‘extinguish’ autistic traits and ‘normalize’ children, otherizes benign behavior, lacks evidence of effectiveness, works against the development of key life skills and independence, and leads to serious, trauma-based mental health phenomena, and increased suicidality.
Many have bravely shared their personal experiences publicly, on social media, through blogs or online support groups, as well as through organized action. They’ve compared ABA to the type of conversion therapy the LGBTQ community has suffered. They’re onto something.
ABA’s creator, Ole Ivar Lovaas, had ableist views and was involved in prominent gender and sexual non-conformity experimentation studies as he developed ABA precepts in the 1970s, but you’d never know this from the way ABA’s history has been sanitized and framed within ABA-supporting communities. There’s a cult-like following to ABA, which flows largely from the medical model of autism, which portrays autism as a tragedy to be treated and cured.
Most families get involved with ABA following a child’s diagnosis, when they’re unsure about the next steps, and are attracted by the advertising of ABA organizations, which promise to improve their child’s life. What most hadn’t realized until recently is that any gains made come at great cost to the child, that while therapists delivering ABA have had training in behavior modification they’ve had no required training in autism, and that for most autistic people, in the long term, the risks outweigh the rewards.
Much of what the anti-ABA community is trying to vocalize I’ve seen validated in my work as a lawyer. In 2017, I began my career in legal aid, representing low-income disabled adults in obtaining Social Security government benefits to pay for food and shelter, which involved extensive disability history and medical reviews in order to establish eligibility.
I was exposed to a broad cross-section of the disability community, and what I witnessed regarding interventional methods didn’t fit what I had been taught.
Most of my autistic adult clients never received ABA due to its early unaffordability, and instead relied on other services to aid in language and skillset acquisition. Meanwhile, the autistic adults I saw who were ABA recipients–as well as several families I encountered in community advocacy whose autistic adult children had been in ABA programs–fared only marginally better in functioning, and presented with one or more of anxiety, depression, OCD, insomnia, and Post-Traumatic Stress Syndrome.
I didn’t interpret a cause-and-effect relationship upon these observations alone. Many of my clients have complicating external factors like domestic violence and poverty, the quality of healthcare services can vary, and the population sample size wasn’t large enough to draw this conclusion definitively.
However, with so many independent personal accounts from autistic individuals and families, as well as a new scientific movement, any reasonable observer cannot confidently deny that ABA is negatively affecting the autistic population.
In 2019, a neuropsychologist released a co-authored article with a parent and service provider citing research that shows the unsuitability of ABA for autistic individuals, the current lack of scientific testing regarding ABA’s effect on ‘lower-functioning’ and nonverbal autistic people, and highlighting the drivers of expanded use, including the potential current market size of $17 billion annually.
This was followed by the pro-ABA community’s response, which argued that ABA isn’t unethical or ineffective because therapists are bound to the scope and manner of practice within the ABA Professional and Ethical Compliance Code, that there are hundreds of studies demonstrating ABA’s success at reducing behaviors considered problematic by consumer families, and that autism is a neurological disorder and ABA is a scientific approach that provides real-life support for families seeking treatments.
Having grown up in a pro-ABA community, I can attest to many of the misperceptions and flawed assumptions about autism identified by autistic individuals. And I agree with the original authors who issued further, compelling rebuttal in 2021, and find the structures and incentives inherent to the business of ABA, the conflicts of interest involved, and their ethical and human rights implications, deeply concerning.
Despite the fact that addressing a spectrum condition with a one-model-fits-all approach is counterintuitive and that ‘in no other area of child development does the government prescribe and mandate access to’ one packaged therapy, ABA has developed a quasi-monopoly.
The messaging is that it’s the most effective intervention available, and that ‘if you don’t work with an ABA provider, your child has no hope.’ So, many families don’t realize they’re putting their loved ones through a costly and traumatic program because they feel this is the best care they can get and the outcomes they hope for are the closest to an idealized normal.
ABA’s monopoly is maintained by the scientific community’s lack of research into and investment in alternative techniques that address autism as both a cognitive and existential experience rather than just a behavioral one–an approach adult autistics who have undergone ABA have described as violating the fundamental tenets of bioethics, as well as the United Nations’ Convention on the Rights of Persons with Disabilities.”
Ms. Vaugeois, do you really think going against a marginalized group will look good in the history books, as us autistic adults fight to reclaim the autism narrative and our human rights?
In a nutshell:
ABA is simply ‘gay conversion therapy’ but replace ‘gay’ with ‘autistic.’ It was developed alongside gay conversion, with the same principles, by many of the same people. This is verified in scientific journals.
Being autistic is simply how my brain works. There are both upsides and downsides to being autistic, but pretty much all of the downsides come from ableism in society. Being autistic isn’t a “behaviour” and shouldn’t be punished, nor should our hiding our autism be rewarded.
ABA violates the United Nations’ Convention on the Rights of Persons with Disabilities.
The organization behind all ABA providers, the ABAI, endorses the Judge Rotenburg Center and their electric shock torture of autistic children.
Even the “new” “kind” “gentle” “reward-based” ABA is abuse. Children and adults lose their autonomy and their ability to say no. This makes them much more vulnerable to sexual exploitation, and ironically, more dependent instead of less. My independence is dependent on my ability to make decisions for myself. ABA takes that away. Even the “kind” ABA.
The US Department of Defense’s meta-analysis finds ABA to be of no help to autistic children.
Pretty much all research independent of the ABA industry makes the same findings.
Autistic adults have been screaming from the rooftops that ABA is abuse!
“Private equity has shown initiative in its jump into autism services in recent years–a move that acknowledges the support autistic individuals and their families need. In 2018, Blackstone acquired the Center for Autism and Related Disorders, the world’s largest autism therapy provider. Similar acquisitions by other firms soon followed.” According to Wikipedia, “Blackstone’s private equity business has been one of the largest investors in leveraged buyouts in the last three decades, while its real estate business has actively acquired commercial real estate. As of 2021, the company’s total assets under management were approximately US$880 billion.”
Blackstone is funding the lobbyists in Ontario who are pushing for more ABA funding.
Are supporting something akin to gay conversion “therapy,” that’s a violation of the United Nations’ Convention on the Rights of Persons with Disabilities, that’s opposed by the marginalized group that it’s supposed to “help,” “progressive” values the ONDP should be endorsing?
Don’t end up on the wrong side of history, MPP Vaugeois.
Regards,
Kim Crawley
Kim Crawley: cybersecurity research, writing, threat intel | Linktree
Check out one of the best known cybersecurity researchers in the biz! Links to books and online content, a lot of which produced for some of the top tech companies. a rel="me" https://hachyderm.io/@crowgirl
Kim Crawley, buttondown.email/Crowgirl, @crowgirl.bsky.social, @crowgirl@hachyderm.io, linktr.ee/kimcrawley