This is a hard post to write. I’m even struggling with how to begin. But it’s something that’s been on my mind for a long time, and I want to address it.
Months ago, I had a little free time (ha!), and I was surfing around looking at T-shirts on Café Press. I found one that I really loved, that I thought I just had to get for Nigel. It said “Autistic and Proud.” I got a lump in my throat just looking at it online, just thinking about how proud I am of my son and how hard he works to “be like everybody else,” as he puts it. I’m proud of how far he’s come, from his days of screaming due to sensory issues and not being able to talk. I think he’s wonderful, and so is every other person on the spectrum. Because all of them are trying so hard just to function in this noisy, bright, busy, often intolerant world of ours.
My moment of pride only lasted a few seconds – and then I remembered that the pride is mine. Nigel – and this is hard to write – is not proud of being autistic. No matter how I applaud his efforts, no matter how often I tell him that he’s got a really great brain, no matter how many times I tell him it’s okay to have autism. Here’s the thing: It’s not okay with him. Nigel has a non-acceptance of his autism. Certainly not denial – he knows it, he accepts that it’s part of him. He doesn’t refute it. But he hates it; he even says, “This stupid autism! I want to rip it out of my head” because of his negative social experiences in the past few years. I try to encourage him, tell him the autism is part of what makes him the fascinating person that he is. That I’ll help him as much as I can with the difficult parts. I know that having the diagnosis is good because it helps him to know the ‘why’ of his behavior and the challenges he faces. Maybe later the self-acceptance will come. I hope it does. Because I hate to see him berate himself and blame the autism and have him wish that it wasn’t a part of him.
But I don’t know how to help him get to that point of self-acceptance, other than to just keep doing what I’m doing. It just makes me so very sad. This is one of those hard things. When they respond well to therapy and learn to talk and adapt to their severe sensory issues so that you can actually take them out in public – when and if they can do all of that, autism is still there, making things hard. I think I wrote my recent “positive” post because I just needed a break from the negative. Because I know I’m not the only one in the house experiencing the negative. It changes over the years – but it never goes away.
And maybe that’s why Nigel feels the way he does about autism. He lives with it; he knows some of what it means for him, and most of it has been negative. I try to point out positive things for him – he learned to read at age three (before he could talk, even), he’s very good with maps, he remembers historical facts easily. And that’s all well and good. But at the end of the day, when you’re fourteen and you just want to be like everybody else, I guess it’s hard to be ‘autistic and proud.’ I just hope, with all of my motherly heart, that he’ll get there someday.