ABA is Unethical

 All forms of Applied Behavioral Analysis (ABA) violate the four fundamental principles of bioethics.

The principles are:

• Principle of Respect for Autonomy – What does the patient wish?
• Principle of Nonmaleficence – "Do no harm."
• Principle of Beneficence – The treatment should benefit the patient.
• Principle of Justice – Things like patients of similar need receiving equal treatment.

Note: I use a bulleted list instead of numbering to emphasize that the principles are non-hierarchical. In analyzing ABA, there is no need to worry about hierarchy as every form of ABA violates all of these principles, but if this is your first exposure to these principles, I do not want to present the wrong idea.

What is ABA?

Applied Behavioral Analysis is presented as a "treatment" for autism and is similar in form and origin to Gay Conversion "Therapy"

Note: I will be using the word "treatment" and "therapy" throughout this article with the meaning, "a course of action taken to induce a change in the subject" and will try to avoid using the quotes around the word to emphasize this every time. It is erroneous to consider ABA to be a medical treatment as it does not benefit the patient.

It was created by Ole Ivar Løvaas, who began his experiments on autistic children in the 1960s. In the 70s, Løvaas branched out and worked with anti-LGBTQ psychologist George Rekers on the "Feminine Boy Project", what we now call "Gay Conversion Therapy".

The idea is to use unrestrained behaviorism in order to eliminate "undesirable" behaviors and foster "desirable" ones.

For "Feminine Boys", undesirable behaviors were things viewed feminine such as attraction to men. For autistic children, they include things like humming and tapping. "Desirable" ones include things like compliancy, obedience, and showing physical affection.

They force the external presentation of those behaviors through reward and punishment in one-on-one sessions. To this day, sessions are still recommended to be done for 25 to 60 hours a week and as soon as they are diagnosed ("the earlier, the better"). 

ABA is beyond the level of carrot-and-stick; I compare it to the level of turning one's stomach inside out and salivating at the sound of a bell.

Don't Mourn For Us ... no, seriously, stop

One of the most consistent reactions disabled persons get is the sorrow and pity others feel for what they think must be our "wretched" existence. Worse than that, is the framing and belief that we are a burden on our loved ones and society; that we are a stone around the neck of our parents, partners, and carers. 

Almost thirty years ago, Jim Sinclair gave a presentation at the 1993 International Conference on Autism in Toronto outlining many of the features of the Neurodiversity Paradigm and the consequences of how our lived experiences are twisted by many non-autistic (allistic) carers. Sinclair's speech and subsequent article (published in the Autism Network International newsletter Our Voice, Volume 1, Number 3, 1993) continue to resonate decades later.

If there is an "Autism 101" class, Jim Sinclair's "Don't Mourn For Us" should be required reading in it. It simply must be one of the first things that a parent confronts when they receive their child's diagnosis. I also think it is one of the best introductions to the ideas of the Neurodiversity Paradigm, and I believe it applies to so much more than autistic persons and our parents alone.

Read it, reflect on it, come back and join me for some of my thoughts extending off of the work. It's less than two thousand words and freely available here: autreat.com/dont_mourn.html 

A Spanish-language version is available here: autreat.com/no_sufran.html

One Autistic Person

If you spend some time exploring the Autistic community, you are bound to come across the truism, 

"If you've met one autistic person, then you've met one autistic person."

Love it. Great saying. Classic example of autistic humor, changing the expectation of "then you've met them all" into something much more accurate. I especially love that it speaks to autism being a multidimensional spectrum condition that expresses itself so many different ways. This has been part of our community long before the current DSM labeling.

There's a dark side to this saying, though. Some use it to silence actually autistic voices. "Autistic people are not a monolith. Your experience is not our experience."

These voices come from both within and without. They are in direct opposition to individual autistic persons speaking their lived experiences and sharing their reflections and thoughts. Sometimes it is internalized ableism, sometimes it is a trauma-reaction to feeling different excluded from the first place someone has felt they belonged, and sometimes it is from folks with an agenda of keeping autistic experiences isolated and down so they can speak over and for us. 

At this time, imagine me badly faking a cough while saying, "Autism Speaks" and "Autism Moms™".

(Reminder: "Autism Moms™" does not refer to mothers of autistic children, but is a pejorative phrase specifically referring to mothers and carers of autistic persons who promote anti-autistic and even pro-filicide messages, who speak against their own children, and who believe they understand autism better than any autistic person does. The name comes from the unrecognized irony of them objecting to identity-first language such as "autistic person" decrying that "autism does not define you!" while simultaneously building their identity around the fact they have a disabled child.)  

The complement to the "if you've met one autistic person..." saying is that the more autistic and neurodivergent persons we meet, the more we share and pay heed to each other's truths and lived experiences, then the more we can understand ourselves and the more we can accept our own truths as well as the truths of each other.

Building Up to a Meltdown ... and Burnout ... and C-PTSD ...

For anyone who knows an autistic person, please know that meltdowns tend to "build up". For me, restrictions on my autonomy and agency are the biggest weights on the scale, while jarring noises and other sensory issues are probably number two, yet it always seems like those are the final "trigger".