Spectrum

Listen, we’ve only got a little while to get this wrong. After that, our kids can screw things up for themselves. I feel for the parents whose children may never be independent, for the ones who just don’t know. Scott and I are so lucky, because we do know. Our kids won’t just become independent adults, they’ll have college degrees to show for it. Even though we get things wrong right and left, our kids are turning out just fine.

Assuming that Sam gets that little monster temper under control, he’s going to be a good student. He’ll dance circles around his academic subjects, I’m certain. He’s got a good heart, when his impulses don’t overwhelm it. Caroline’s in an even better spot. Hell, if second grade had a valedictorian, I’m pretty sure she’d be it. She’s whipsmart. She’s also got more compassion than I’ve ever known in a human being. So much that it breaks my heart sometimes.

Our kids don’t need a ‘cure’. But don’t think we won’t take them to therapies. Just because I don’t think they need ‘curing’ doesn’t mean I don’t see them struggle in the world. Good lord. Caroline loses points like spilling water on the days when she insists on walking around the class and arguing with the teacher instead of doing her work. Sam has at least one massive outburst a week.

And it’s not necessarily going to get easier as my kids age. In some ways, it will get harder. Because people don’t outgrow autism. It isn’t something that stops at age 18.  Except when dealing in extremes, it just doesn’t get much attention after high school. So we don’t often hear about the people like my kids are going to be. The ones whose autism is simply a thing in their lives. It throws up roadblocks, sure. But it doesn’t stop them. It won’t hold them back from adulthood.

When we hear about autism in adults, we primarily hear about the great successes, like Temple Grandin, or the institutionalized people who society labels failures. And I think that’s really my point here. I have friends, family even, who gasp at the thought of labeling a child “autistic”. Autism isn’t a label. It’s a condition. It’s chronic. It’s lifelong. And if the results of a study in South Korea can be replicated outside that country, it may affect as many as one in thirty eight of us. Even if that study can’t be replicated, the accepted figure is one in 110. Update. The CDC just released new numbers. One in eighty eight. I’ll be discussing that soon.

Words like ‘success’ and ‘failure’, now those are labels. I’ll celebrate successes. Temple Grandin is held up as a role model for a lot of good reasons. The woman is extraordinary. But failure? That’s a label I’ll reject. Those adults who display symptoms of profound autism aren’t failures. The scale is just drastically different. Their successes are achieved at a more granular level.

When a parent or family member or friend rejects the diagnosis of autism, what they are really rejecting is the label of ‘failure’. In their minds, the word ‘autism’ still means ‘failure’. It doesn’t help that even within the autism community, stereotypes persist.

I’m writing to call bullshit.

Because my kids aren’t some fucking statistic. They’re children. I get it that the diagnosis may seem surprising. I’m not going to get offended if you say, as many do, “I had no idea she had autism.” Or “I would never have guessed he was on the spectrum.” I’m actually cool with that. I don’t take pride in my children’s conditions, and I understand that there is a subset of behaviors typically (sometimes stereotypically) associated with the disorder. And hell, sometimes it is possible to look at a person and recognize that there’s a spectrum-type issue going on. The fact that my kids rarely display those traits does make them unexpected to many.

But if you say instead, “She can’t have autism; she’s too verbal. Too ambulatory. Too good at eye-meeting. Too compassionate.”  “He can’t have autism; he doesn’t sound like Rain Man. He’s got great motor skills. His sentences make sense. He isn’t sitting rocking in a corner humming.” Then brace yourself, honey. Because I will flay you. I’m done with judgment. I’m done with labels.

My kids have autism. Scott and I can deal. Can you?

___________________________________

This is the first in a new periodic series I’m going to do called Straight Talk About Autism, in which I talk about some of the things we encounter raising two kids on the spectrum. It’s going to be about my family. I don’t expect it to apply to anyone else. If it does, so much the better. But I think that until a lot of families and individuals at all points of the spectrum start to speak up and describe their lives, this attitude that autism equates failure will persist. And seriously. Could you tell this face that it was a failure? I didn’t think so.

 

I’m also linking up for the first time in entirely too long with The Lightning and The Lightning Bug for their ‘Listen’ prompt.

 

About jesterqueen:
Jessie Powell is the Jester Queen. She likes to tell you about her dog, her kids, her fiction, and her blog, but not necessarily in that order.

Comments

Spectrum — 30 Comments

  1. What a wonderful, assured, strong, positive and forward thinking post this is. I love how you say it so plainly, so openly, and so factually. I think you are a marvellous mother for your attitudes here. And the photo of your daughter is just shining :)
    Hop over and visit Noeleen’s recent post The Law does not waiverMy Profile

    • The short answer is that as long as you're on wordpress.com, you can't. If you go over to a self-hosted blog with wordpress.org software, it's a plug-in you can import called comment-luv. I'm getting ready to do a series about my migration to self-hosting if that's something you've been considering!
      Hop over and visit jesterqueen’s recent post Spectrum My Profile

  2. This was a touching, positive and to-the-point post. I'm very happy I came over to read it. You are a strong and compassionate mother and you're kids will get their strength through your example. I LOVE "they’ll have college degrees to show for it". I look forward to the next installments.

    Not nearly the same, my son had/has ADHD (he's a freshman in college) rather severely and it has affected most aspects of his life including socially and academically. He's incredibly bright and it breaks my heart that so much spins around and around in his brain and he can't get it out oftentimes.
    Hop over and visit Gina’s recent post When The Cat’s Away…Stream Of Consciousness SundayMy Profile

    • I know what you're talking about. Caroline's and Sam's school is for kids with Asperger's, High Functioning Autism, and ADHD. I see the kinds of things the kids with ADHD struggle with every day. And it is SO frustrating for us as parents when we see our kids worlds spiralling. Your son has my best wishes and brightest thoughts. And so do you.

  3. Me, too… I am glad I came over to read this. (I'm thinking about take a week off from Trifecta to read some of the Trifectans' great blogs — there's only so many hours in the day). You children are blessed with parents who KNOW; they will have the support they need until they get that college degree and beyond. I am still learning about autism, and I thank you for this compelling piece. Your daughter is beautiful; you have the same eyes!
    Hop over and visit Sandra’s recent post Dear Trifecta Writing ChallengeMy Profile

    • Thanks for visiting! I know exactly what you mean. The Trifecta community is amazing, and I DO think I need to just take a week to explore these wonderful blogs outside of the posts!
      Hop over and visit jesterqueen’s recent post Spectrum My Profile

  4. I don't understand why people feel the need to say anything to you about this issue, Jessie. You are sticking up for your kids and teaching them how to be powerful, strong, independent people. Bravo.
    Hop over and visit andra watkins’s recent post I’m Watkins DammitMy Profile

    • Sooo so many of them are people who ought to know better. We are blessed with a collection of extremely supportive parents (a total of five between Scott and I) and siblings (Scott's 3; mine is history and would not have been at all helpful). And we are also connected to some wonderful professionals in our community. But holy hell the people who need to feel my wrath…
      Hop over and visit jesterqueen’s recent post Spectrum My Profile

  5. The labels some kids are burdened with can never be removed. I hate that, and hate the stigma attached to these labels. Our children are so much more than a word, they are wonderful, smart, funny, and compassionate people. That's what I want the world to see and accept.
    Hop over and visit Tara R.’s recent post Why isn’t this enoughMy Profile

  6. Success and failure are too black and white, there is so much more to life than those. Especially when we live in a society that focuses on the academic and material. Happiness may just be enough, and love. :)
    Hop over and visit idiosyncratic eye’s recent post Some SunshineMy Profile

    • I have to agree. Material things are good. And there are some I wouldn't know how to give up. But the pure joy when I taught my son the word awesomesauce? There's nothing to compete with that.

  7. Thanks for stopping by so i could find your blog..Great post that has really made me think about so many things…I agree with the blogger above, success and failure are too black and white, we need to think in other degrees

  8. Amen sister. My oldest is a girl with Aspergers, and the words you said here sure do resonate with me. I've had that "I will flay you" sensation when trying to explain that it's a SPECTRUM and dispel misconceptions. I'm very accepting of what makes my daughter who she is. There are people who arent, tho, and maybe you and I can make a difference when we speak like you have today.
    Hop over and visit Frelle’s recent post Being Present : Just Be EnoughMy Profile

    • I think more parents ARE speaking out. And every voice I hear helps me put that 'alone' feeling behind me. The first years of Caroline's Asperger's diagnosis were such lonely ones. But the more people speak up, and the wider the community grows, the more we have a chance to challenge the misunderstandings that are directed at the people most precious to us.

  9. I think it's honesty like this that needs to have a place at the table when people talk about what constitute families. So far, all 3 of my girls are disease and disorder free. There's no indictation they have my anxiety problems or my wife's tourette's. But if they do they need to know they're no different tahn anyone else.

    great post

    • Yay! I'm glad your girls are healthy and happy. But I'm also glad you know what kinds of problems are possible so you know how to help them if something crops up down the road.

    • Yes! The way you described your son, I thought, "Bet some of the same comments are directed at him as my kids". I get frustrated with that one, but I 'get' it. And I consider people who say that to be really asking to learn. "What IS autism anyway?" is how I really perceive the question. An open inquiry and a desire to know more.

  10. i also got those comments from those who didnt believe me or want to believe that there was "something not right"…never go against the gut feeling…

    • Those people infuriate me. I've known my daughter was on the spectrum since she couldn't latch when nursing when she was a NEWBORN. And yeah, technically it could have gone either way at that point, but it didn't. Because I was right damn it.

  11. Wonderful post! Good for you for speaking up – if only more parents were like you. I don't care what diagnosis any child has – the rule is we love them all IMMENSELY and intensely. and that is that.

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