Autism is a SPECTRUM disorder

1 in 150.

I know you’ve seen the commercials. AutismSpeaks has been kicking butt and I’m thrilled that this issue is finally getting the attention it deserves.

When Laini was diagnosed with PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified…when they know the kid is on the spectrum, but not exactly sure where) at the age of 2.5, there were maybe 3 or 4 books in the store about it, and most were targeted towards the more “classic” Autism diagnosis. Children without language, or with cognitive as well as communication impairments. Last night we were in a Barnes & Noble and there were two entire sections devoted to “Special Needs” with most books focusing on Autism, and even a few on Laini’s specific diagnosis (high functioning autism/Asperger’s…enough nonverbal learning disorder to throw that in too).

Oprah did her first-ever show on Autism this week, and while it was great to watch, I finished it disappointed. “1 in 150” makes a nice sound bite, and the childrens’ stories did make Oprah cry, but kids like my Laini were completely ignored. Autism is a spectrum disorder and that “1 in 150” includes kids like Laini who says “I love you” to me all the time (and means it) and will hug, cuddle and appear “normal” in so many ways…but she really isn’t. Would you tell a blind child that they could see if only they were more motivated? Welcome to Laini’s life.

I just sent this email to Oprah.com and AutismSpeaks. I don’t expect an answer, but it felt better sending it:

I was thrilled that Oprah did a show on Autism, and it’s exciting to see all the attention that Autism is finally getting in the media. But I feel like children like my daughter are falling through the cracks. Her diagnosis is high functioning autism/Asperger’s syndrome/nonverbal learning disorder. I’ve heard all 3 in the past 6 months, and going back to her original PDD diagnosis 9 years ago. No matter which it is, the prognosis and plan of attack is the same for my daughter who at 11 has an above-average verbal IQ, but will cry at a schedule change, can’t follow multi-step direction or see the “big picture,” has no clue how to relate to people, struggles to tie her shoes or fasten a button and can’t ride a bike. While she is fully verbal, has the vocabulary of a 15 year-old and can hold a conversation if it’s on a topic that’s already in her brain, there is no mistake that she is on the Autism Spectrum.

My heart aches for those parents shown on the Oprah episode. I know that my burden is much less than for many, and for that I am grateful and humbled. But I feel a tiny bit cheated that the *spectrum* of Autism isn’t being addressed when opportunities like the Oprah show present themselves. Asperger’s syndrome or HFA wasn’t even mentioned. Yes, the statistic of 1 in 150 is startling, but that includes children like my daughter who may appear on first glance to be completely functional (yet “quirky”) and really are not. We are the ones who hear, “She’d do so much better if she just tried a little harder.” “You should push her to make friends.” “She could look me in the eye if she really wanted to.”

I understand that children with lower-functioning autism make better television and are a better “call to action,” but please don’t ever forget what I know you already know…Autism is a SPECTRUM disorder. Those of us with children high on the spectrum have kids who are expected to cut it in a world they don’t understand and can’t relate to, and they have to do it with much less support and compassion.

Please make sure our voices are heard too.

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3 thoughts on “Autism is a SPECTRUM disorder

  1. I watched it too [a few days late but I got there in the end] I’m in two [several] minds about the programme. However, I think for me the problem is that I’m so enmeshed in autism, it’s hard to remember what it’s like when it’s a new subject. If I could grasp that viewpoint again, perhaps it was a good programme as it’s a start point, raising awareness – you can’t go from 0 – 60 without losing your audience, at least that’s what I’m hoping.

    Best wishes

  2. Vanessa says:

    What a great letter. I hope you get a response. My daughter is high functioning as well and we are currently in a debate with her school system about whether she qualifies for an IEP or not. We were told that our daughter is bright (never doubted that) and that “sometimes bright kids are quirky.”

    Granted, she’s only 3 1/2 now, but my fear is that she won’t qualify for assistance, because academically, she is above average, and then when she gets into kindergarten and above, her “quirky” behavior gets her treated like a discipline problem, when she’s not.

    Sorry to vent, but THANKS for posting this and writing that letter. There are so many places on the spectrum, hopefully we’ll get more exposure for all if the different places soon.

    -Vanessa

  3. Cristina says:

    That was a beautifully writen letter. It is very difficult for children who fall somewhere in between on the spectrum. Autistics in the media are usually portrayed as severely low-functioning or high-functioning savants. Although it is good that it bring Autism Awareness, it also confuses a lot of people. When I tell people that my children are autistic, they expect them to either be non-verbal or savants. They are neither.

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