I just read this article from the New York Times Magazine. Before you click on it, let me tell you what the title is: “The Kids Who Beat Autism.” Yes, it made my blood pressure increase before I had even read it. I get so defensive about topics like this. I’ve written before about this topic, about the issues surrounding the idea of “recovery” from autism, about the dangers of viewing autism as an awful disease that needs to be cured. (As a side-note, I do really appreciate that the article quoted Ari Ne’eman and gave some of the autistic adult perspective. I really, really appreciate that, a lot.)
There are many blog posts and articles already out in the blogosphere, many of which are written by autistic adults. And I can’t even imagine what it’s like to be autistic and reading about how the core essence of your being is something that should be changed or fixed (here is the blog post that led me to the article initially).
I am trying to be open-minded and see both sides. And I can sympathize, and try to understand, that if you are a parent of a child who is struggling, you would want to do anything and everything in your power to “fix” or “cure” that struggle. I can try to understand that if someone promises you “recovery,” you would do anything you could to get to that point. I can try to understand that the concept of “a neurotypical life” might have seemed much more enticing than “an autistic life.”
Here’s the problem. And actually, there are a lot of problems. One of which is the whole idea of recovery in the first place, but that I babbled about a lot in that previous blog post. The issue I’m toying with right now is that there is no one autism. I believe in my soul (and this is not the time or place to talk about causes of autism or influential factors because I have not fully done my research and am not open to an argument on the topic right now) that there are many contributing factors to autism. I believe that there is no one cause. I believe that there is no one treatment. I believe that while there may be a cluster of similar symptoms, every case, every person, is ultimately different.
Take anxiety. Depression. OCD. PTSD. I don’t feel confident saying that there is ONE way to treat each of those disorders (or any other mental health condition, for that matter). Sure, there are best practices. Sure, there are evidence-based studies. Yes, I believe in cognitive-behavioral therapy. And dialectical behavioral therapy. And individual therapy and group therapy and residential treatment and exposure therapy and medications and alternative treatments and……the list goes on and on. But what works for one doesn’t necessarily work for another. I have many friends with the above diagnoses, and while some of them have some of the treatments in common, each person’s course is different. Because each person is different. And the causes are all different.
Not to mention – are we really “recovering” from those mental health disorders? I would argue in a lot of ways, no. Anxiety is in my wiring. It always has been. It’s in my family genetics, it’s in my blood, it’s in my brain. No, it doesn’t consume me. Yes, I’ve learned strategies to handle it. Yes, I’ve done the therapy route and the medication route and the alternative treatments. And yes, those things helped immensely. But does that mean that I no longer “have anxiety” or does it mean that I have learned strategies and tools to handle my innate wiring in the most effective way?
I can think of several friends who dealt with acute bouts of anxiety or depression, got some support and help for them, and now don’t really deal with that anymore at all. Is that “recovery”? Does it mean the rest of us should aim to achieve that same goal? Or does it mean that everyone is different, that maybe some things are acute and some things are chronic, that some things are innate in our wiring and some things are situational, some things occur when many factors join together and some things seem to disappear as soon as one factor disappears? Who knows, and I don’t think it matters.
I worry that settings our sights on autism “recovery” or “cure” sets up countless families to fail. Because they might have tried all of the zillions of treatments too, and…..their child is still autistic. But that doesn’t mean they’ve failed. I just want to hug all the parents and tell them, I KNOW you’re doing the best you can. Please believe me. You don’t have to prove it by making your child “recovered.” Help your child be the best version of himself that he can be – autism included. And of course – would some individual’s quality of life, or ease of life, be easier if they didn’t have _____ (insert whatever diagnosis or disorder)? Yes, of course. Might be easier. Might be simpler. Which is why I have such compassion for the fights we all take to help ourselves and our loved ones, whether it’s with a physical disability, mental disability, neurological disability. We don’t want things to be hard, and if we have the slightest inkling that we can make things easier, we want to. I guess it’s just that there are multiple ways to make things easier. There’s eliminating something, or there’s working to embrace something.
I don’t know how to end this. I don’t know what else to say. I’m afraid to post this. To potentially open up a can of worms. But I guess that’s the point, right? We have to talk about the hard things, the scary things. We have to disagree sometimes, have to debate and discuss. That’s how we move forward, that’s how we remove stigma from conversation topics, that’s how we grow and change.
So, here you go. Dialogue. Discuss.