Pride and Self-Prejudice

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.

10 thoughts on “Pride and Self-Prejudice

  1. M

    i just had trouble reading this. i sort of read a paragraph, looked a way for a bit, kept reading.

    that bitterness is such a terrible thing to feel…and it’s so hard to go out, see others operating without these barriers, and feel the resentment, bitterness.

    i’m trying to conjure up magically comforting words, but there aren’t any obviously.

    acceptance can take a long time…it’s nice that, whenever he has trouble finding it, you’re there expressing it without pause. that counter-balancing positive mindset…that may be all he has sometimes (on bad days)…you, tanya, are amazing.

    the world needs a lot more tanyaness.

  2. mama mara

    ((Hug)) With you as his mom, I have no doubt Nigel will come out the other side of this. When my Rocky wonders out loud how much easier life would be with autism, I want to yell “You’d hate it! You’d lose your amazing memory and honesty and …” But I don’t. I let him feel the grief. Autism sucks, and I can’t change that. I can, however, help him find a way to be happy anyway.

    You can too, your Tanyaness!

  3. kyra

    i’m with M. the world needs more tanyaness. i swear to you, nigel is taking in the love and acceptance you have for him and one day, he’ll reach down and find it and he won’t need a t-shirt because he’ll have his own skin to wear and wear proudly.

  4. kristi

    I have found a shirt before that says “I have Autism. Be nice to my Mom.”

    My mother got TC one that said…”I am not spoiled, bratty, I am autistic.”

    I understand how you feel. It is hard!

  5. Lex Savko

    I hope he gets there too. Just keep reinforcing those positive moments, like when he took apart your computer keyboard to let it dry out and then put it back together. That’s definitely an example that comes to mind where he should be proud of being autistic.

    When those moments happen, keep reminding him that he should be proud. And when you write something this difficult with such compassion and insight, I hope you listen to your brother telling you that you should be proud of yourself. You’re a great mother, Tanya!

  6. Mary (MPJ)

    {{{Tanya}}} It’s so hard to hear that a beloved child hates any part of themselves. I haven’t gotten there yet with my kids, but I remember from my childhood that then teen years involve a lot of self-criticisms and feelings of isolation. I hope it will change as he gets older.

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  8. Anthony

    I can somewhat relate to this article. When I was a child I was misdiagnosed autistic. At the time though when I thought I had it, I was extremely self-conscious about eveything I did in public. I felt like everything I did had to be carefully thought through before acting. I was practically ashamed of myself as I had a label upon me and I had secret accomodations from the special education dept. I was embarassed to even tell my closest friends about it because I feared they would never treat me the same as always. They still don’t know to this day. It haunts me sometimes that I had to hide part of my life from everyone I knew when I was in school.

  9. Tanya Savko Post author

    Anthony, thank you so much for your comment. It’s so unfortunate when misdiagnoses occur, because the one misdiagnosed suffers the most. I’ve had that happen to me when I was younger (not with autism, but a different disorder), and it took years for a correct diagnosis. I’m sorry for what you went through and what you must still feel. I hope you’re able to find some peace with that.

    Best wishes,

    Tanya

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