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cross-post from Facebook

April 2nd, 2013 (06:30 pm)

It's Autism Awareness Day. Let's raise some awareness.

So for those of you who don't know, I am on the autistic spectrum. I have a disorder called Nonverbal Learning Disability (NLD), which is related to Asperger Syndrome and is considered by some doctors to be subsumed in that diagnosis. (Meaning some people would consider me to have Asperger.) As the name of the disorder suggests, my verbal abilities are not impaired, but I have significant difficulties in a number of areas -- apart from the obvious I-suck-at-math, I have more challenging deficits in executive functions, spatial relations, processing of sensory stimuli, physical coordination, social interactions, and the ability to see the big picture. What that boils down to is that I can't get organized to save my life, I need a GPS to navigate a straight line, I'm prone to bumping into things and falling over, I am completely lost and incredibly anxious in social situations, and I am the worst chess player you will ever meet, because I cannot see how one thing interacts with/causes other things. I didn't learn to tie my shoes until I was ten and couldn't learn to tell time on an analog clock until I was sixteen (you think I'm kidding. No.) I was told I was irremediably stupid, I was told I was super smart and super lazy, I was told I was of average intelligence and under intense parental pressure to obtain success wrt verbal skills. Mostly, unless there was a book in my hand, I just felt stupid. It's like there are blank places in my mind where all the spatial relations/social interactions/etc stuff is supposed to go, and I've had to learn workarounds.

And are you saying "Wow, I'd never have known!"? Some of you may not be. Some of you definitely are. Because I'm the smart one, right? The academic shining star, the Harvard graduate, the one who writes all the thoughtful well-reasoned stuff? Well, yeah, I have done all of that. And I also have an autistic-spectrum learning disability. I am a mostly-invisible autistic (or borderline autistic) person.

So: I am claiming visibility. I'm on the autistic spectrum. Now for the thing I've been perseverating about all day, the problems inherent in the search for a "cure" for autism.

Given what I was saying about blanks in my brain and all that, I don't doubt that it sounds like something for which a cure should be sought. And, yeah, not gonna lie, I hate the stupid blanks. I would love it if someone could wave a wand and make me suddenly understand how to get from point A to point B and not have anxiety attacks in social situations and not have near-meltdowns on bad days when all the noises in the world get loud and chaotic and smells are overwhelmingly disgusting and flip me out completely and make me want to hide in a padded box until it all goes away. I'm not going to pretend that there's not a lot of sucky stuff attendant on my personal disability.

But I do not -- really DO NOT -- like the idea of "seeking a cure". Because, you know, say instead of someone waving a wand now, someone had waved a wand at my birth and taken away the NLD. That doesn't just mean taking away the getting lost and the social anxiety. First of all, NLD is often correlated with impressive verbal skills, and I do not know who I would be without my verbal proficiency and I do not want to know because that's who I am. But, you know, in a wider sense, all of this is who I am. I am the person who learned mental workarounds for my basic mathematical deficiencies and got there in the end. I am the person who, unable to intuit the various implications of things that are unspoken and commonly understood, learned to reason them through. I've learned to cope. I think the learning was good for me.

But more than that, I just want to go back to the issue of how this is who I am. I build my life around my words. I think things through once, twice, three times and make the knowledge part of me. I program a GPS to navigate around the block and laugh at myself. I carry noise-canceling headphones and scented products that I like and can rub under my nose when the world gets bad, and it's OK. I think differently, but I don't think I think badly. I don't think I need to be cured. I don't WANT to be cured. And I don't even know what a cure would mean. How can you cure someone of who they are? How can you cure someone of themselves?

I would like to add, too, that people who are more severely autistic than me often want to change even less than I do. That thing I was saying about the blanks in my brain -- as I understand it, that is not the way most autistic people perceive themselves. They find it difficult to communicate with the world in conventional ways -- or the world finds it difficult to communicate with them -- but they don't necessarily want someone to jump in and tweak their brain functioning until they are neurotypical and able to communicate in the usual way. They value the way that they think, they value the way that they are, and they don't feel that they need to change themselves to be the way the world expects them to be. Many value the concept (as I do) of neurodiversity: we are different, we are diverse, and our diversity is of value. We have something new to contribute to the world. We are of worth.

So, yeah. I'd encourage everyone to think long and hard about the mentality of Autism Speaks and the more generalized, very common idea that we need to find a "cure" for autism. Don't ask us to become different people to suit the world and its narrow expectations. Ask the world to broaden its expectations. Ask the world to accept us. We deserve that. And the world deserves us.


Posted by: Ponykins (rolypolypony)
Posted at: April 2nd, 2013 11:51 pm (UTC)

Unsurprisingly, so well said.

Posted by: Beautiful Disaster (pennywhistle)
Posted at: April 3rd, 2013 04:41 am (UTC)

I actually didn't know that about you. Thanks for sharing your personal story.

I know of only a few friends who are on the autism spectrum themselves, the others are parents. And as parents, it's REALLY hard for them to see the point you're making here. They just want their child to be normal, to be happy...I understand why they think a cure is what's best. I don't know that they've ever even thought that maybe their child is ok just the way they are

Posted by: Daughter of Odhin (gythiawulfie)
Posted at: April 3rd, 2013 12:44 pm (UTC)
I did not know that about you,

However, I completely get why you said what you are saying.

The people with the disorder, to them, it is just how they are wired. To their families, yeah, a whole different story. My SO son has Aspergers. He is in college and he is a WONDERFUL kid. My SO was afraid we wouldn't connect, and we hit it off famously. Why? I let him do it on his terms.

My SO, is also on the spectrum, but mildly. (He got tested after his Son was diagnosed...)His other kids are not on the spectrum.

SO YES! I get you completely.
All I want is better education for the folks, including me, who DON'T have it, to help us understand what YOU deal with, so we don't make life any harder than it has to be.

Does that make sense?

I was supposed to do a walk for autism awareness this month, however, an accident has left me rather unable to do so. So some of my friends are walking for me. I'll be on the sidelines cheering them on.

Posted by: lily bart (everypoembreaks)
Posted at: April 3rd, 2013 07:47 pm (UTC)

I love this, thank you.

Posted by: Late Night with Piprrrrrr (mcoletti)
Posted at: April 3rd, 2013 10:48 pm (UTC)

Thank you for posting this. It's important for more people to be aware of those they know that are on the spectrum.

I'm pretty sure I'm somewhere on autism spectrum, too, as I've had to learn a lot of cultural cues by rote, among other signs. I've not been formally tested, though, but have entertained the notion of doing so now and again. Your post is definitely tipping me in favor of testing.

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