Thursday, 2 April 2015

No Cure: Autism Acceptance, Not “Treatment”

by Emily Brooks

I used to work with a little boy with bright curls who loved making long lists of numbers and wandering around the room. I knew he was being present in his own way. I saw that he was getting used to being around other children, and that playing by their sides was how he could interact at that point. His parents couldn’t stand it, though, so they picked him up and physically moved him into other children’s space, berating him to “play with your friends.” I could see their anxiety with his position on the autism spectrum. Unwilling to let him exist in his own way, they turned to chelation therapy and hyperbaric oxygen chamber treatments. It was the organizational policy not to outwardly judge any caregiver’s choices. Yet when his parent gushed to me about how “happy” and “social” he was after these “therapies”, it took more than average effort to bite my tongue. Worse, I felt complicit in the dangerous torment he experienced under the name of “treatment.”

I was reading a website the other day that stated something to the effect of, “Unfortunately, there is no cure for Asperger syndrome. But there are interventions that can help.” It saddened me that a lack of a cure for an autism spectrum disorder could be seen as an unfortunate event. When it comes to autism, the word “unfortunate” shows up far too often. For instance, an article claimed that it was highly “unfortunate” that there were no drugs specifically for autism yet. The words “intervention” and “treatment” don’t make me happy, either. Like the boy with the curls, some autistics find themselves trapped in biomedical interventions meant to rid their bodies of so-called environmental toxins. If caregivers generally want what’s best for their kids, then the bad decisions they make to put their kids through “treatments” must stem from a combination of misinformation and a desperate hope to make autism disappear.

Other treatments might seem less physically harmful, but could have emotional consequences. I remember the day when a mother uttered a command to her two-year-old son on the autism spectrum and proudly showed me how he could sit still in a child-sized chair without moving his hands. I nodded, but thoughts raced across my mind: “You gave the command to your kid like he’s a dog,” followed quickly by, “But he’s two! Why on earth would any two-year-old of any ability sit still as a statue in a chair?”

Behind applied behavioral analysis seems to lie the assumption that teaching children to act normal will make them normal. It’s backed up by sensationalist journalism pieces about how children who undergo intensive ABA therapy in early childhood no longer meet the criteria for autism in their teens, positioning ABA as almost miraculous. In my opinion, if a child no longer has autism, then they never had it to begin with. If they simply don’t act autistic anymore, then they have autism but are conditioned into a neurotypical behavior pattern. Almost every parent will “train” their kid at some point—for instance, to stop when they say stop, or to wait before crossing a street. Yes, I know caring, kind, and smart professionals who are trained in behavioral techniques.  Yet ABA stifles personal expression. It’s especially harmful to tell scared parents that ABA is the only way to help their children.

When I listen to parents swear by extra-virgin olive oil, Himalayan sea salts, or gluten-free pizza, I can’t help but feel sorry for the family members who spend time, energy, and money while companies profit from their fear of autism. When I read blog posts entitled “I Hate Autism!”, I feel sorry for the parents who, instead of getting the chance to enjoy their child, feel compelled to change them. When I read comments about how verbal autistics don’t understand mothers’ experiences because we don’t have “real autism”, I feel sorry that this desperation and suffering that surrounds autism rhetoric has gotten in the way of a beneficial autism community. When I read about electroconvulsive therapy and highly-sedating drugs as the answers, I feel sorry for the child, teen, or adult on the autism spectrum who has been forced into this experience. I also feel sorry for the family forcing these “therapies” on children because they are clearly not at peace with who their child is. I know that most caregivers want the best for their kids, even though their interpretation of what that is may vary widely. This does not excuse their choices of treatments that hurt their autistic children, though.

Autism is everywhere in the news, but the language surrounding autism likens it to illness. Those of us on the autism spectrum are taking “autism awareness” and making it “autism acceptance”. It’s part of the overall change in autism rhetoric. Language holds social power, so changing language is a way to change the way we look at issues. April may be full to the brim of people lighting it up blue and proudly showing their support through the iconic puzzle piece symbolism, yet for many in the autistic community, these actions feel empty or represent a larger campaign to normalize or erase our existence. Before I gave its website a close critical reading, I saw nothing wrong with Autism Speaks. For many years, Autism Speaks seemed friendly and passionate about autism. I once represented an organization at an event, and the person tabling next-door was representing Autism Speaks. She was very friendly and gave me a little blue puzzle piece pin while chatting with me about vague-sounding walks for autism. Under the guise of friendliness and help, Autism Speaks relies on language that scares me and others in the autistic community. I laughed the other day as I read their mission of helping “all who struggle with an autism spectrum disorder.” “Well, as I’m struggling not from autism but rather from ableism in society,” I thought, “they’re certainly not helping me!”

Places like Autism Speaks and their focus on cures and treatments, make me cringe. It’s offensive to hear others say they want to “prevent” other people like you from existing. This language is born from the medical model of disability. The medical model sees impairment as part of us that must be fixed, whereas the social model of disability places greater onus on society to adapt so that it is easier for us.

Being autistic is not a problem that should be done away with. It is an equally-valid way of experiencing the world. Therapies and medications might help some of us. But if a “treatment” is meant to, as I read on a parent’s blog the other day, “essentially cure autism”, then that must become a gigantic red stop sign for parents and providers. Yes, there are times that aspects of my autism spectrum disorder are harder to deal with, and then I need support. And yes, I love myself and don’t want to be any different, because I would lose who I am. I hope that autistic children will also love themselves despite the cure-based biomedical rhetoric that surrounds autism in the media, and I hope that parents, siblings, and professionals will love—and accept—autistic people for who we are.

to read about the author Emily Brooks click here

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Bren Murphy said...

I agree with where you are headed on this - the immediate assumption that autism is something you suffer and it is unfortunate. Re assessing the approach to autism and other spectrum issues starts with de-stigmatizing and taking the shame out of the condition.

Anonymous said...