Wildflowers for Jade: The Autism Wars - The Great Mommy Wars of Special Needs

Monday, April 1, 2013

The Autism Wars - The Great Mommy Wars of Special Needs

Welcome to Autism Month. My Facebook wall looks more like a war zone. "Autism is wonderful!" "Autism is horrible!" "Those who are saying it's horrible/wonderful are screwing up the message for the rest of us." 

Photo: Niicolas Celaya

There are some times my Facebook wall looks like it's about to implode on itself in a fiery mix of issues. I am connected to and FB friends with people from many beliefs and life-views, and often those views will clash. Loudly. Sometimes I'd like to tell both "sides" of an issue to shut the hell up and stop fighting. OK I actually did that once a few months ago. 

And now I'm sort of doing it again. 

I hate boxes and prefer think of each issue as separate, because they are. As for Autism - 

It is two sides of the same coin. I wish people could see that they're arguing different issues and semantics. Autism may be an "umbrella" but under that umbrella there are different pieces. 

Issue One: 
Autism is Awesome. It is wonderful. Well, our children who have Autism are wonderful. They are. They're awesome human beings who certainly have differences and also sameness as other NT awesome children. They love, they laugh, they cry, they create, they have talents and mad skillz.

And the push for the message that Autism is Awesome is because people hate. People hate our kids. People who have never met our kids hate our kids for having Autism. People have prejudged them ever since Autism was a word, and mocked, and bully. Oh do they ever bully. Police misunderstand them, teachers harass and even kill them, and vice versa. 
Then there are people who still don't know what to think, and that have only seen the (usually very wrong) stereotyped media portrayals, if anything.
So if you're asking yourself why Autism Awareness Month that's why. We want you to be aware that our children are first children. They really are. We want you to be aware that they feel and love and hurt. We want you to be aware that they are vulnerable, and that they need - no we're going to demand - that they be given a seat at the table of life. There's plenty of room for everybody. Stop being so damn greedy. Aww, look how sweet they are. 

Issue Two: 
Autism is not Awesome. Not meaning the homicidal commenters who troll the internet, or even Autism $peaks (which is issue three…) but the mothers of kids with Autism who think Autism is not awesome but their children are awesome. 
Can you see how we're saying the same thing here? 
It's because they love their children. This is where we get into the spectrum/umbrella/everyone is different thing. People with Autism can get to a good place. They can get to a great place. A lot of the first group are those who have found their creative niche or are adults with Aspergers or raising kids who will be adults who can function - even if sometimes awkwardly - in society. 
Autism is not awesome parents are spending sleepless nights and hellish days watching their children/adult children suffer from a very physical side of Autism that can be torture. There is nothing awesome about watching your child try to destroy himself because he's in pain and have not much you can do about it. I think we can all agree on that. If your child is physically suffering, the thing that's making him suffer is not awesome

However the Autism is Not Awesome crowd needs to also be aware that broadcasting their "not awesome" message too much too loudly too adamantly might look like "our kids aren't awesome" to outsiders. Who we are trying to reach. Who really can't help your kid's medical issues anyway.  
And the Autism is Awesome crowd needs to be aware that … sometimes Autism is not awesome. And that they look callously either unaware or uncaring that some people are truly suffering from it. 


In a discussion with a friend of mine we partially addressed this divide. The awesome crowd vs the not awesome crowd. Which is largely also the vaccine injured vs the not vaccine injured. Tragedy vs not tragedy. I think (I hope) we came to a consensus that we could agree we are talking about two sides of the issue and both have equal validation. 

If the 1 in 50 is even in part caused by vaccine injury, the injury is a tragedy. If someone is born with genetics that make him/her Autistically gifted, it's an occurrence. In neither case is the child a tragedy. The thing that happened is a tragedy. 

Everyone has a different story, even when we end up in the same place. I try to respect each one's story. We're not the same. 

Now I'm quite (quite) sure that I can extrapolate all I want, and the two sides will go on raging. It's not
black and white, and I'm aware it's even more complex than what I've said here. Probably I will still have to either spend all month waiting for my FB wall to implode, or start hiding stories to make it more pleasant until all I have left is pictures of kids and puppies and cute grumpy cats. But I'm still holding out that my friends can make some peace with each other's POV, even if they don't know each other.

(There is a third issue which is not part of the coin: People who think our children with Autism are not awesome, but tragedies. Entities that exploit and make our kids look like tragedies in a money grab for donations that don't actually go to help our kids. Then there's the parents who can't accept their children. Control freak parents. There are parents who can't accept Autism to the point where they are ashamed of and reject their own children, in either little ways or big ways. That is not a side of any coin, that's a distressed family that needs a slap in the face to get some counseling and suck it up that life isn't like playing barbie dolls. You can't control who other people are. Your children are awesome and you need to wake up to that and love them for who they are are, not who you want them to be. )

As for me: 
My son reacted badly to his vaccines. Every one of them. After his first year shots he regressed in speech. I finally wised up and stopped before his MMR. I still get on my knees and thank God for that. 
No I can't prove that vaccines "caused" his Autism, though I am convinced they at least greatly attributed to it. Because I was there, and you weren't. That is a tragedy. 
My son would get SO frustrated, and I would stoically struggle with never letting him see me cry over it. He tried so hard to communicate with me. He couldn't get the words out right. He couldn't understand my words. I'd look into his eyes and see the emotional pain from it. That is a tragedy. He gagged on his food and couldn't eat it, until he got down to 3 foods. That is a tragedy. I had to listen to him asking what is wrong with him when he couldn't keep up with his peers and say he wanted to kill himself at age 5. That is a fucking tragedy. 

I love my son. I love his personality. His health - while we have some issues - is really pretty good. I love that - in spite of my concerns and me watching every minute of his therapies like a hawk to make sure they didn't break him - instead it helped his true personality shine through even more. That is wonderful. Remembering with clarity the exact moment he unprompted said "I love you Mommy." That is wonderful. That he knows nothing of what's cool or uncool to his peer age group and doesn't care, that is awesome. That he still plays with what he wants to play with, and still crawls into my lap 100 times a day to tell me he loves me. That is awesome. That he's so obsessed with Godzilla he knows enough about it that he could write a Zillapedia on it. That is awesome. That he is completely and totally his own person. That is awesome. 

Forget the label. It's not about Autism like it's a personality that can have it's feelings hurt. My SON is Awesome. 

Now, let's all try to get along. 

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