Purple or Defective?

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About a year after Nolan was diagnosed with autism, our family was invited to be a part of a new program that was started by the medical center where Nolan was diagnosed. This was a really unique program at the time, and I don’t know if it’s even still in existence.

Basically, there were 6 families involved, and we committed a few hours a week to learning how to best help our kids. Of the 6 families, 4 of us had fairly new diagnoses and kids under the age of 5. Two of the families had kids between 7 and 9 years old and had had their diagnoses for at least 2-3 years. In subsequent years, I believe they geared this program more toward new diagnoses—sort of like, “You’ve got a family member on the spectrum—now what?”

We were split into two groups, and each group would rotate between either a group discussion with a Speech Language Pathologist or individual sessions with a behavioralist. In addition, we would all come together for a sort of support group discussion centered around a different topic each week.

This photo of Nolan is from about the time of this program... He's rocking what I like to call Kramer Hair.

In this group, the topic of diagnoses came up often. I remember one mom who had a very verbal kiddo (we’ll call him Shelby—not his real name) and had to push hard to even have an evaluation done because of it. Shelby’s biggest needs tended to be related to sensory processing and fine motor skills. As she said, “I don’t care what his diagnosis says. You can call him purple if that is what will get us the support we need.”

On the other hand, we had Orville’s mom. Orville (again, not his real name) was one of the two older kids in the group, and his mom often derailed the conversation or took us far far away from the topic at hand. After a few weeks of this, most of us were pretty annoyed with her shenanigans.

But of all of the absurd and off-topic things she talked about, I most remember her asking our opinions on whether or not she should tell Orville that he has an Autism Spectrum Disorder.

Let’s just let that marinate for a minute…

Her concern was that she didn’t want him to be labeled. And while I can understand that, I feel like that would have been doing him a disservice. For one thing, not discussing his diagnosis with him leaves him open for the possibility of someone else discussing it with him before he’s gotten to discuss it with someone he loves.

It makes me think of a scene in The Jerk (one of my all-time favorite movies). The movie opens with Steve Martin’s character (Navin) stating, “I was born a poor black child,” and quickly Navin finds out (as an adult) that was adopted. It’s hard not to think of the anguish and innocence in Navin’s voice as he asks, “You mean I’m going to stay this color?” I like to think that no parent actually wants to put their child through that kind of a moment.

But Orville’s mom was concerned that if he knew about his diagnosis that he would be limited by it. And while I can understand that, it never felt like the right approach to me.

I feel like Shelby’s mom was closer to the mark on this one. It doesn’t necessarily matter what we call this diagnosis. What matters is that we know what this means in our lives and use it to help us through the world.

What I hope I would have said a dozen years ago to this mom (had I been able to get a word in edgewise) was that the important thing wasn’t whether he knows that he has a diagnosis. What matters is that you’ve discussed with him that his brain doesn’t work the way most people’s brains do. It’s not a good thing or a bad thing. And it will never change the fact that you love him and support him.

But understanding that different people process information differently can be to his advantage. Over time, it can help him understand that it’s okay if he does things differently than his peers. Plus it can help him understand why he may need extra support with some things or have strong interests in things that his peers might not have thought twice about.

To me, helping your child understand that they have autism helps them understand both themselves and the world around them a little better. Denying that feels like denying who they are or what they experience in the world.

In John Elder Robison’s memoir Look Me in the Eye, he refers to himself as a “defective kid”. He knew he was somehow different than the other kids, but he didn’t understand why. He didn’t react to things the way people expected him to, he didn’t quite fit in with his peers, and no one really understood him. He assumed something about him was just defective. He thought he was somehow broken and unfixable. He didn’t know that he lived with Autism Spectrum Disorder until well into his adulthood.

I can’t imagine not talking to your children about their own diagnoses at the risk of them feeling like a “defective kid”. It’s my job as Nolan’s parent to do what I can to give him the tools he needs to be successful in life… If I didn’t help him understand his diagnosis and what that means for him, wouldn’t it be like hiding his toolbox all together?

Fast forward to many months after that program finished for us… I was talking to Shelby’s mom, and it came up what a strange thing that was for Orville’s mom to say. She told me that she had since met Orville, and it was clear that he was aware that he has autism.

How? “Oh, he told anyone who would listen.”

It seems Orville wasn’t afraid of a label. And we shouldn’t have to be either.