(Eli)One social movement that I have started to see and be able to participate in during my lifetime is the ABA reform movement. ABA was originally created and continues to be implemented largely without input from the Autistic community, who are calling for providers to include Autistic people’s perspectives in their decision-making process when developing new therapies or implementing treatment plans. I am the only Autistic behavior analyst I know, so I have been a direct witness and recipient of programs such as exposure and response prevention therapies that were done to “mainstream” or “normalize” myself or other clients, often either in traumatic ways, or for things that we (as Autistic people) did not feel needed to change.
I was a kid who was forced to drink sodas in an exposure therapy program so that I would stop standing out when I went out with friends and ordered milk. I detested the feeling of carbonation in my mouth, and the taste of the sodas made my stomach turn. The only reward for finishing a soda was being done with having to drink the soda. I still refuse to drink it. Although I know it looks odd to be 25 years old and ordering milk when I go to a restaurant, I have found through extensive experience that no one really cares that much, and in my opinion, the experience of being forced to drink soda was much worse than the teasing from friends when I refused to drink it. This is one very small example of a situation where it was decided on my behalf that something about me was wrong and needed to be fixed, and I was not even asked my feelings about it- why I disliked soda, how I felt about the jokes my friends made, or whether it hurt when I had to drink a whole bottle.
This is where the motto, “Nothing about us without us,” comes in. This phrase is used for the disability rights movement as a whole, but my personal experience is with using it in advocating for myself and for my clients in therapy. “Nothing about us without us” represents a push for communities to have a voice in the decisions that are made about them on their behalves. Including Autistic voices into the conversation about Autism therapies has lead to a reduction in punishment-based treatments, while raising interest in finding positive ways to redirect behaviors, or even to encourage behaviors such as stimming for emotional regulation purposes. This shift to making behavior therapy reward-focused and fun has improved treatment outcomes as a whole, and the field of ABA is rapidly working to expand its understanding and approaches to treatments.
https://www.huffpost.com/entry/nothing-about-us-without-us-mantra-for-a-movement_b_59aea450e4b0c50640cd61cf
