Are Parent Advocates Guilty of Pathologizing Autism?

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Late last year, in reaction to one of my columns, an administrator of a Queens Facebook parent special needs page accused me of “dehumanizing” autism. On another occasion, through Instagram an adult autistic individual lividly lashed out in reaction to another column, which was an educational piece about Applied Behavioral Analysis (ABA) therapy. In both instances, it was as though someone pierced my heart with a dagger. As a parent of an autistic nonverbal child and passionate autism advocate, I was thoroughly shaken, even cried; thinking all of my efforts to boost autism acceptance and awareness were futile. How was my transparent honesty about MY journey as a parent, coupled with the determination to help other caregivers being colored as villainous? At one point, I even thought about just silencing myself, like—to borrow Amy Winehouse’s song—go “Back to black.” However, I steeled myself to keep moving forward and as my daughter’s dad stated, “While diagnosis and treatment of autism as a pathology may be tied to Nazism and religious fundamentalism, so do a lot of the basic amenities and technologies intertwined with our lives on a daily basis. We are all entitled to our opinions, and should be open to others, so long as they are sensible.”

In a recent article published on e-flux.com, “Autistic Spatiality and the Limits of Care,” the author argued that “Autism advocacy is divided in two camps: the despairing parents of autistic children on the one hand, and autistic individuals and disability justice advocates on the other.”

If I as a parent elect to get my daughter ABA therapy to ease her challenges in expressing her basic needs and wants, how does that translate to me not embracing neurodiversity? (ABA is a type of therapy that focuses on improving social skills, communication, reading, academics, and adaptive learning skills). My daughter, Soa, is 13 years old, and needs assistance with showering, getting dressed, brushing her teeth, and other daily routines. Recently, we were able to get her after-school ABA therapy, and within a mere three weeks, we’ve seen so much progress! I agree, ABA may or may not be beneficial for a “high-functioning” autist, who does not have Soa’s challenges, but my daughter is beautifully benefiting from it. So, again like Soa’s dad stated, everyone is entitled and should respect each other’s opinions and journeys.

Unfortunately, one of the earliest known mass institutions to mask or cure individuals with disabilities such as autism was born during the rise of Nazi rule in Vienna. Steinhof was the site of the Nazi pediatric clinic, Spiegelgrund, which from 1940 to 1945 served as the location for the holding and euthanasia of “uneducable” children who could not or would not conform to Nazi youth education. The insufferable cruelties these individuals were exposed to were absolutely inhumane.

However, how does that compare today to a well-meaning parent doing their best to help their autistic child? How can you accuse these parents of pathologizing their children’s autism? According to verywellfamily.com, pathologizing a behavior is to label a perfectly normal behavior as a problem, a behavior that requires intervention, treatment or drugs. Is banging one’s head against a brick wall, a “perfectly normal behavior?” Some autists have challenges in expressing their emotions or anxieties, and resort to self-injurious actions or even violence. Don’t these individuals need some sort of assistance to help them cope?

As an autism advocate, my life’s mission is to help my daughter, her peers, and parents be the best we can be—not euthanize our state of being, nor wipe out what makes us special. Soa has to live in this world and needs all the tools she can acquire to be as independent and self-fulfilled as she can be. What I consider dehumanizing is condemning parents and their loved ones for trying. Our children all need tools to cope with their anxieties, challenges in communicating their needs and wants, while focusing on their strengths.

 I talk about autism to open doors into the reality of our lives as caregivers, and to build understanding, acceptance and appreciation of our special children. Share your thoughts by emailing This email address is being protected from spambots. You need JavaScript enabled to view it. or visit: www.rockawaybeachautismfamilies.org.

By Kami-Leigh Agard

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