The history of ABA and the unfortunate reality of current therapy options
ABA was founded on a basis of hatred and ignorance about autistic people.
Ole Ivar Lovaas created ABA and saw autistic individuals inhuman. He later went on to create a gay conversation therapy.
"In any case, what one usually sees when first meeting an autistic child who is 2, 3, or even 10 years of age is a child who has all the external physical characteristics of a normal child—that is, he has hair, and he has eyes and he has a nose, and he may be dressed in a shirt and trousers—but who really has no behaviors that one can single out as distinctively ‘human’. The major job then, for a therapist—whether he's behaviorally oriented or not—would seem to be a very intriguing and significant one, namely, the creation or construction of a truly human behavioral repertoire where none exists."
"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 the person."
The purpose of the therapy is that autistic people are broken, and should not be allowed to be themselves. That they should be subjected to treatment until “molded” into something deemed more acceptable to society and their parents.
ABA doesn’t actually change the subject into what the program and their parents want. An autistic kid does not become allistic.
What it does accomplish is to essentially force the subjects into acting more like the type of person desired by the program (masking).
After enough bullying, shaming, coercion, and general breaking down of a child’s personality and defenses, that child learns to pretend to be allistic as much as possible, to please authority figures and avoid negative consequences (beatings, denial of food, denial of affection, denial of water, denial of washroom breaks, denial of preferred items etc).
It’s intensive “training” using aversive and coercive methods, to force change in a child’s behaviour. A lot of the time, this is about changing harmless self-sooothing or coping behaviours in autistic children.
ABA is an intensive therapy, usually 35-40 hours a week, of compliance training. Children are often pulled out of school for a good chunk of these hours, missing out on actual education, for what is essentially a full time job.
In these sessions the RBT (who only had to do a few weeks training) has the child do tasks repetitively earning a small prize like a candy or a token to gain a privileges to their favourite items and activities. The consequence is their favourite things and activities are removed, including the encouragement of the removal of their parents attention, until the child complies.
When subjected to compliance training for 35-40 hours a week, autistic children are taught that they lack autonomy. They are taught that they do not have the right to say “no” to something that they do not want to experience.
That’s incredibly harmful and dangerous. This leaves autistic survivors of ABA to be highly susceptible to various forms of abuse both as a child, and later on in life.
Also “pretending to not be autistic” thing is extremely problematic. I'll talk about that in another post.
A study in 2007 found that nearly half of all ABA survivors met the diagnostic threshold for PTSD. Other studies referenced put the number closer to 85%, and also include C-PTSD.
In 2016, Congress funded a report to examine whether the ABA services they have been effective
With 3,794 participants, this is the largest study ever conducted on ABA. The 31-page report entitled, “The Department of Defense Comprehensive Autism Care Demonstration Annual Report 2020” concluded that “ABA services are not working.”
“… 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.”
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.
ABA “therapists” - BCBA stand to lose a TON of money if ABA is considered bad. Parents or insurances are paying around $25,000 for 3 months of ABA.
As a society, we realize that gay conversion therapy is inhumane. We look at the type of dog training that most closely resembles ABA to be animal abuse. We look at residential schools - an idea that bares striking resemblance to the concept and execution of ABA - as a dark spot on our country’s history, and one that we are trying to make reparations for now, after the fact.
Unfortunately, ABA is oftentimes the ONLY resource now available to families with autistic individuals.
When given the diagnosis, the professionals hand out pamphlets and print outs of ABA companies. Some have even resorted to fear mongering or threatening families who refuse to use ABA.
Many doctors are not even taught about ABA or therapy options. They are simply told ABA is for autistic people, push it, and they do.
For families that trust their medical providers and have no other knowledge on autism or ABA, they think their provider is looking out for their best interest.
Many parents are just sadly uninformed and think they are doing the best thing for their child.
This is not helped by the fact that there are even facilities that are basically ABA in name only in order to be covered by insurances that will only pay for this therapy and none others.
These facilities are often floor time or play therapy in disguise which confuses people even more due to the fact that they claim to be ABA but are not. This has caused much discourse between people who think that all ABA must be like this when in fact they just got extremely lucky.
For BIPOC families, who are targeted by authorities already, any therapy they can get can be a potential life line that may help keep their children alive.
This leaves these families in a terrible situation of having to choose between one or potentially the other.
I'll share some amazing BIPOC voices in another post as I am not qualified to speak on their story due to me being white.
And for some families, it has become a last resort choice before having to move to a more institutionalized setting or in some cases threatened with child services.
A good hard look at ABA should be done with funding and encouraging alternatives like more access to floortime, speech, ot, or pt.
Those therapies are provided for some families but given very few hours in comparison, there are no facilities near them and they cannot afford the travel to them, and for some families, they aren't provided at all.
Some individuals qualify for no therapy options outside of ABA and this leaves some families without any resources or help and left to navigate everything alone as best as they are able to.
Which has been our experience and why it is important to me to get information out there, for those who have no other resources.
And sadly understanding that until acceptance and other resources are available to all families EQUITABLY, some may have to choose between one heartbreaking choice or another.
Either way, there is potential risk in ANY therapy you choose to utilize and it should be something to be aware of. So be aware of any red flags.