Rosy glasses?

Many non-autistic parents of autistic children complain that people who are pro-neurodiversity put an unrealistic positive spin on life with autism. They say we ignore the struggles, the pain, and the unhappiness experienced by both parent and child.

I think this complaint oversimplifies the neurodiversity approach. I think it’s possible to acknowledge struggles without making them the center of the story. I think we need to be tactful about what we share and how we share it. I can’t stand seeing parents post videos of their child’s meltdowns. It’s a serious violation of the child’s privacy and dignity.

Thinking about this blog, I worry that I may come across as presenting only the positive side, because most of my stories end with solutions. But notice: many of those same stories start with me saying “Lately….” and talking about a client issue that I have been struggling with for some time.

So it’s not that I tell only the positive stories. Rather, I wait to tell the story until I have a more complete picture. In the days or weeks before an “aha!” moment, there are plenty of days that end with one or both of us in tears. There are messes and injuries and hurt feelings and broken dishes. But those aren’t the important part. The important part is the breakthrough.

There is almost always an answer to be found, and when there isn’t a solution, sometimes you just need to wait for the problem to go away on its own. Remembering that, and remembering that we’ve solved difficult issues before, is what helps me cope with the tough stuff. When I’m getting frustrated and losing my temper, I remember that simple misunderstandings can get blown out of proportion. When my client is crying or hitting because he can’t tell me what he needs, I think about the times we’ve found answers, and I keep trying to understand.

Thinking about the whole story — from frustration to solution, reminds me to keep stretching my mind and trying to think about things in new ways. It reminds me to stop and ask myself if I’m the one causing the problem, being unreasonable, or not paying attention. The successes are like lights in the darkness — the more of them we find, the easier it gets to navigate. I hope that my clients feel the same way. I hope that every time they finally get me to understand something, it gives them hope and inspires them to keep trying to communicate.

This isn’t a well-organized post and I don’t have a fancy conclusion. I just wanted to say that I focus so much on the successes because the joy they bring helps me get through the struggles. It’s a strategy I recommend.

2 thoughts on “Rosy glasses?”

  1. I think one of the things that makes a lot of parents not want to listen is that we often have to tell them “things take time, and things can take a LOT of time to get better, possibly without any easy or obvious conclusion, but they will get better if you put in the time” and that is not as easy to digest as the curebies or doctors or ABA’ers who are telling them “if you do this amount of therapy, starting this early in your child’s life, for this amount of time, they’ll be normal.” Even though when that *doesn’t* work out (and it won’t), it just deepens everyone’s frustration.

    Liked by 3 people

    1. The same could be said for idealism in general. Idealism has the same approach of “things take time, but as we find more answers we may someday be able to find better solutions” and in so doing slowly but surely find ways of making a better world, and the reason a lot of people dismiss idealism is similar to the dismissals of neurodiversity activists, and it’s twofold – on the one hand they hear easy and comforting fairy-tale answers in the promises of various religious leaders, scammy self-help “gurus”, and other such figures.

      But on the other hand there’s also nihilism, which, while not as comforting as any of these fairy-tale answers, it shares with these fairy-tale answers the promise of being able to excuse not assuming responsibility towards working for good changes in the world, and also the promise of being easy to understand so that you don’t have to think about complicated and messy approaches – which makes nihilism an answer that, in spite of its negative character, is no less easy than its airy-fairy counterpart.

      And with the autism parents, you also see this combination of fairy-tale answers and nihilism. Often both in the same narrative.

      Liked by 1 person

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