Therapy: The Complicated Dance between Support and Stigma
This blog is the first of two follow-up posts to my previous blog: Unmasking Autism. I would highly encourage you to read that blog before proceeding here.
In my previous blog, Unmasking Autism, I discussed that masking can develop through childhood experiences and certain therapies. As a reminder, not all masking is bad. Every human mask to some degree. But Autistics masks to a higher and more harmful degree than most neurotypicals; Autistic overmasking has been shown to lead to a higher probability of developing dangerous habits and harmful health conditions. It is imperative that our society works to allow Autistics to unmask and live a healthier life.
To do this, we must better understand the reasonings behind masking. Extreme masking can develop from traumatic experiences with therapies and traumatic experiences encountering a noninclusive neurotypical world.
The most common form of Autism therapy is called ABA, which stands for Applied Behavior Analysis. ABA aims to help teach social skills and prevent dangerous behavior such as self-harm. However, ABA has faced controversy due to unethical methods (such as shock-based and punishment-based ABA). In addition, certain forms of ABA have been criticized for discouraging certain autistic behaviors that are not harmful; one example is punishing Autistics for stimming. These unethical forms of ABA have led to some Autistic people developing trauma and calling for a ban on all ABA. ABA is a wide field of therapy that is constantly evolving. It can be easy to overgeneralize it. It is best to do research and to choose forms of ABA that are ethical and that focus more narrowly on social skills.
I have been fortunate enough to encounter non-traumatic forms of ABA therapy. In my case, I received a type of therapy called Play-Based ABA which was always being watched by a family member. I also received Occupational Therapy and Speech Therapy and I attended social skills groups. These helped me learn and develop useful skills. All of these therapies were ethical and extremely well run; however, the social stigma surrounding these therapies led to traumatic effects in terms of my perception and view of them. Unfortunately, there is a stigma in society with these therapies; many people hold stereotypical views of who attends these therapies, and openly ableist people will call recipients ‘retards’. When I explored the internet I encountered derogatory and cruel comments about “special needs” kids. This made me feel embarrassed to go to these therapies and led me to leave. First I left my social skills group. Then I stopped receiving occupational therapy. Last year, I decided to stop receiving speech therapy.
Since then I have developed my own strategies through unmasking and self-advocacy. Ironically, this would not be fully possible had I not received the therapies I had dropped out of. Simply put, we need to remove the stigma of these therapies. One way to do this is to change the philosophy of these therapies so they are not seen as a tool to make someone “normal” but as an asset to allow Autistics to safely unmask and be included. Another important caveat is that therapies must be individualized. This is an important thing to explain and educate people about. The type of speech therapy, for example, that one Autistic person receives will be different from another.
This is a complicated discussion with so many aspects that I haven’t touched; I try to talk about this topic delicately and carefully as it comes with many strong emotions. Every parent wants what is best for their child. With careful research you can find the right thing for your child; as a parent, you are their advocate and remember their personal needs when searching for effective therapy. My parents were knowledgeable and empathetic. One doctor they encountered was concerned about my lack of development of speech. He suggested that they put a cookie in front of me and tell me to say ‘cookie’, he instructed them not to give me the cookie until I said ‘cookie’. My parents did not implement the cookie strategy and instead carefully researched effective and ethical therapies for me.
At around ages 2 and 3, I began speaking and reading; some autistics never speak but with the assistance of devices they are able to communicate with the world. It is important to view Autistics as individuals and to act with empathy. It takes this dialogue between parents, therapists, experts, and Autistics to develop more ethical and helpful therapies. In fact, my philosophy surrounding ABA and other therapies has developed from conversations with my mom and other parents of Autistic children.
In the next blog, I will wrap up this trilogy about Unmasking Autism and discuss the trauma developed by Autistic kids from teachers, classmates, and a non-inclusive society.