It's Autism Awareness month, folks. Time to "
Light It Up Blue" and wear your
puzzle piece proudly.
Until, y'know, it's May and it turns into National Pie Month or something. Then it's probably customary to sport a rhubarb stain on your lapel where your puzzle piece used to be.
Those of us living with Autism are already
painfully aware of it. Just because the calendar pages flip doesn't mean we get to flip back into "normalcy".
There's a big movement in "the community" for
Acceptance, rather than
Awareness. Yeah, I get that.
The problem comes when certain people try to define what "Acceptance" means.
I follow all manner of blogs and web sites that revolve around Autism. This is my daily life, since Princess and the Professor are both on the Spectrum. Might as well marinate myself thoroughly.
The thing that irks me, and it probably happens in all "communities", is when a few activists (or "advocates", as they prefer to be called) try to define what it means to "accept" and to tell us lowly parents that may disagree that we don't know a damn thing.
Case in point -- there was a
blog written by Suzanne Wright, co-founder of the advocacy group, Autism Speaks, in which she speaks about what a crisis we are facing with more and more children being diagnosed with Autism Spectrum Disorder (ASD).
I read through it and saw nothing wrong with what she said. A lot of it resonated with me.
Boy howdy, though, did "the community" go ape s***. Just Google "Suzanne Wright Blog" and see what comes up.
The latest one of these blog entries is from
this guy. Now, I don't discount these parents' POVs, but they sure do discount mine.
Autism Speaks, through their lobbying group called Autism Votes, has been a part of a push to get
36 states on board with some sort of mandate to require insurance companies to cover services for those affected by ASD. I think that's wonderful. Many in "the community", though, dislike AS because there are no board members who actually
have ASD.
We parents who may or may not be on the Spectrum ourselves can understand enough to advocate for our children, but this group cannot
possibly understand bupkis about how to advocate for those they support. (Huh?)
So, they'd rather throw the proverbial baby out with the blue bathwater.
Then, there is the site called
The Thinking Person's Guide to Autism. The author there, who also contributes to
Forbes Magazine, thinks that AS contributes to the negative stereotype associated with ASD. You can read
her slamming Sesame Street, of all things, for teaming up with AS for an episode about Autism.
Now, this post isn't necessarily to support Autism Speaks. They're not perfect, just like the rest of us. Nor am I trying to attack anyone personally.
What I'm wondering is why some people think that being Autistic/having Autism is just hunky-dory, and
Gee, why doesn't everyone feel this way? Why is wanting a cure being "
insensitive"?
I've said before, in response to various posts I've seen, that it really depends on where you are on the Spectrum. I believe there's a possibility that, had I started school now rather than 30+ years ago, that I would have been evaluated for ASD. I'm more in what was previously considered Asperger's (the diagnosis guidelines have since changed and therefore Asperger's is now part of the Spectrum rather than a separate condition). Would I want to change who I am? Maybe, a little, but not the way I think. I've been able to make that work for me in my life, and that's OK. I know that's where many of these parents and those with high-functioning ASD are coming from.
However, what is missed are those who are on the moderate to the low-functioning end of the Spectrum, along with their caregivers, feel.
Autism Daddy (a great blog, BTW) wrote a
blog post in response to all this hullabaloo. I agree with a lot of what he said. I read Ms. Wright's post with similar eyes.
For those of us who struggle with their child's Autism every day, do we want a cure? You betcha!
I want to cure whatever is trapping The Professor in his own mind. He's brilliant, I know that. He has a bloodhound's nose for anything electronic, especially iPhones or iPads. Within seconds, he'll find it, wherever it is, and will reset and reorganize all of your icons. He once took his sister's Kindle and not only reset it in an effort to get around the child locks, but changed the language to some language with it's own alphabet (Vietnamese, maybe? I have no idea.). It took me 20 minutes to figure out the format of the icons so I could get the unit back into English mode.
He's sweet and gentle, excitable and happy. He's also almost constantly bouncing off the walls, has very little desire/ability to control his impulses, and frustrated by his lack of communication abilities. He's overloaded easily, driven to meltdown by the smallest things sometimes. He wakes up in the middle of the night, on average once per week, screaming like a child possessed. Since he can't tell us, we have no idea why this occurs.
I can't just have anyone care for him. He requires nearly constant supervision. He's a runner -- if you aren't careful, he'll bolt out of the house, and out of sight in a blink. He likes to jump into any unlocked car. Once, he got into the neighbor's car, and before I could get to him, had a bottle of pills in his hand. Cue Mom's heart attack
here.
He has days where he needs to tap everything. He taps so much that paint has come off of my walls and all of my wood furniture has dents. He screeches and screams to communicate joy, frustration, aggravation, with no regard to whether or not Peanut is trying to take a nap.
There are days when all he will eat is Tostitos. One day he'll constantly ask for (or, rather,
demand) cereal bars, and then won't touch them for another week. He'll eat spaghetti by the shovel full but ONLY if I make it the
exact same way each time. No creative cooking on spaghetti nights; otherwise he may not touch the only thing he'll eat with veggies in it for months.
He refuses to potty train. He's
six.
Do I wish there was a cure for all of that? YES.
Do I love him any less? Not one iota. He's still my boy, and I love him to bits.
I'd rather Autism not define him or limit him. Right now, I feel that it does. I'd really rather not be as
aware of ASD on a constant basis.
I'd also rather not have other parents/caregivers/people with ASD give me the impression that they think I cannot possibly care and/or fight for my son if I want to "cure" him.
Why is it so wrong to want to have some bliss?
