The downside to “curing” autism

Autism Awareness Month ended with April two days ago. Normally I would have written a post raising awareness of some challenge faced by those of us on the spectrum and encouraged acceptance, or perhaps created a post about the positives that can be found in life with autism. Instead, I chose to wait an extra couple of days to write this last post because of a report on a news station in Indianapolis.

According to what I had heard about this report, it would essentially tell parents how they could cure their autistic kids through behavioral therapy. Great news, right? Well, only sort of. I could see several ways for this report to go, so I decided to hold off forming an opinion until I had a chance to watch it.

The report turned out to be about what I expected, where they implied that autism can be cured through applied behavioral analysis (ABA) therapy, but they made sure to avoid coming right out and saying it’s a cure. Throughout the report, I listened to parents who were amazed and thrilled that ABA therapy cured the signs of autism in their children. Only one couple actually claimed their child had been cured of the diagnosis.

Don’t get me wrong. I’m thrilled that these parents had such a great experience and that their children are doing so well. It’s wonderful that they were able to overcome huge challenges and make tremendous progress toward acting “normal.”

But here’s my concern, and it’s based on my own experience and the experiences of other adults on the autism spectrum. Let me preface this by saying I wasn’t officially diagnosed with autism until I was an adult, and as a result I never had any kind of behavioral therapy or social skills classes or any of the other treatments children routinely receive now. However, I have read the stories of and heard from other adults who were diagnosed as children and have been through those treatments, and our experiences are quite similar.

The parents in this news report mentioned typical autism behaviors such as hand flapping, meltdowns, verbal challenges, etc. Through ABA therapy, their children ceased to show these unwanted behaviors and gained the ability to speak plainly. This is good, but it’s also where the concern comes into play. While these children now appear normal by all outward signs, what’s going on inside them?

I spent a good portion of my childhood and teen years learning to act like everyone else around me. I wasn’t always good at it, but I could do it well enough that I came across as occasionally quirky and pretty shy to most people. They couldn’t tell that I was autistic just by looking at me, and I became well-trained to hide those behaviors that would make me obviously different. I never really cared what people thought of me, but hiding the signs of autism was easier to deal with than putting up with ridicule or being told I shouldn’t do whatever it was (although I was never given a reason why beyond, “people your age don’t act like that”).

Sounds good, right? I mean, I could blend into a group, I wasn’t walking in circles and flapping my hands, I wasn’t having meltdowns in the middle of church. The outward signs of autism weren’t obvious, so no one could tell I was on the spectrum.

But you have to keep in mind autism isn’t just an external presentation. No matter how normal I looked or how well I appeared to fit in, I was still suffering on the inside. I still didn’t understand the social cues, body language, and jokes that everyone around me did, but I could fake it well enough that I just came across as a little naïve or gullible. I had friends, participated in choirs, was included in social activities… you know, all those things “normal” kids do. Yet inside, I always knew I was different and never felt like I fit in with any group. I couldn’t explain why that was, but I knew from an early age I wasn’t like everyone else and no amount of pretending I was changed that.

Fast forward a few years to adulthood. I began to hate hiding who I am on the inside, but by that time I was so well trained to appear normal that I was scared to death to just be me. Sitting on the floor and rocking when anyone other than my closest family members were around was out of the question. Half the time, I wouldn’t even do it around family for fear of ridicule or being told I shouldn’t. People my age behaved a certain way, and I pretended I could do the same things, but I always felt out of step, like I had to run to keep up when everyone around me strolled at a leisurely pace. If I said, “Hey, I can’t do that,” I was told to try harder and to quit limiting myself. I couldn’t get through to people that the limitations were real because of a neurological disorder, not because of laziness or fear.

My story is not that unusual, and neither is the anger at having to hide myself just to make the people around me happy or more comfortable. So many of us have become adept at hiding who we really are, but all that does is make life harder, not easier. Fitting in and acting like everyone else may seem like a blessing to parents of autistic kids, but being true to yourself is more important. The ability to accept yourself, weird and repetitive behaviors and all, goes a long way toward finding the happiness that all parents want for their kids. This is why I push acceptance so hard. If I could have been accepted as I really am instead of as who I pretended to be my life would have been so much easier. I’m still working toward allowing my autism to show when other people are around, but it’s not easy to let people see me as I really am after so many years of hiding behind a mask.

Autism, regardless of external appearances, still affects the way a person experiences life. It creates real challenges and limitations, no matter how normal the autistic person may appear. The more normal an autistic person appears and acts, the higher the expectations that are placed on them. Maybe they can live up to them, maybe they can’t. But by thinking a few years of full-time (forty hours or more per week) behavioral therapy will make an autistic kid into a neurotypical kid, I’m afraid a huge disservice is being done to those kids.

I firmly believe ABA (when done properly) plays an important role in helping kids on the autism spectrum learn to cope with the world around them, but I don’t think it should be touted as a way to cure autism. By all means, make life easier for those of us on the autism spectrum, but please don’t try to force us to be people we’re not. We are autistic. It’s hardwired into our brains, and no amount of therapy will change that reality.

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One thought on “The downside to “curing” autism

  1. Sadly, while I’ve certainly learned a great deal about autism over the past few years, I’ve also learned that there is no consensus – and likely never will be – on what autism “really” is, what causes it, what treats it, or why any individual person has the symptoms of what we presently call autism spectrum disorder. This void of information has been energetically filled by the voices of parents and others who have made a life out of anger and/or the willingness of desperate people to believe that something – anything – could make things “normal” after the birth of a child with autism.

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