Hypothetically speaking we just had a passionate online exchange about autism and this happened:
Dear Autism Parent,
I am tearing up too. I’m sorry if I came off harsh, or rude. I am also very passionate about autism, my 17 year old nephew and my 5 year old are on the spectrum. I rarely hear people differentiate what I call side effects (for lack of better term) from autism itself. I belong to a group of 18K members on Facebook for autism support and I see people post “I kicked autism’s butt today” or “I hate autism” all the time. I live with meltdowns, running, diapers way past the typical potty trained age etc, etc. I understand that a lot of parents are living with what may appear to be easier, or harder situations. But it’s all relative. The fact is that we’re all in the same boat together. All of us love our children and ache over their hardships, and as parents in turn we take these hardships on ourselves and they become our own.
But I believe autism is beautiful, and a big part if what makes our kids who they are, they have autistic brains. I know I wouldn’t be me if I had a different brain.
The people I look up to and respect in the autism community who have autism, refer to themselves as autistics. They see it as a part of who they are.
So when I hear “I hate autism,” or similar I can hardly keep myself from pointing out that autism isn’t the problem. It’s the over-stimulation and our lack of knowledge about how to help our kids adapt and learn how to overcome the challenges they face everyday. To me this is a big issue that never gets talked about. I believe if my son heard me say “I hate autism” or ” I fight autism everyday,” he would assume I was talking about him personally, because he is autistic.
It’s so confusing. For the most part Neorotypicals think it’s PC to refer to the person first and then the diagnosis. Or we’re supposed to say he has autism, not he’s autistic, because “they are more than their autism” and we think that makes us more aware and accepting, which I appreciate. I get that we want to be sensitive, that’s a good thing.
But it’s a total catch 22, because when we say they’re more than their autism, we’re implying that autism is not an integral part of what makes them who they are. We’re also implying that it shouldn’t be a huge part of who they are.
Who would you or I be if we had someone else’s brain? And what’s wrong with our brains that they should play the most important role of what defines us? “I hate neorotypicalness” How does that feel?
I’m wondering if I have some kind of impulse control issue, because I should have just written a quick reply and not try to build another soapbox. :3 You don’t need that. I’m sorry. And truth is that I’m putting into words for the first time exactly why I feel so passionate about this as I do. I’ve never been confronted on the why’s of this specific opinion I have.
But since I’m in so deep here, I might as well sink and lay it out flat. When I read I hate autism, even if squished between, love, embrace etc, it still reads to me as “I hate a huge part of what makes our children who they are.” That’s what I hear, and how it makes me feel, I read it almost daily in my ASD support group. And why I get so passionate about wanting to point out that we don’t hate our children. Not one thing about my child do I hate. And I know the same is true for you. I know it is.
I might hate that my son doesn’t say mama or dada. I hate that he is forced to cover his ears because a light bulb is buzzing two rooms away. I hate that he can’t enjoy a good meal because the taste overstimulates him, or the texture freaks him out etc, etc.
But I know those things aren’t who he is. I know he would talk and want a way for his brain to be able to filter out those sounds, or distracting, scary textures, tastes, lights etc, etc so he could focus on other things. If he knew how, I know he would say hello to the neighbor girls when they are calling to him.
And we’re doing everything we can as parents to find that solution, the clue that will help us help our kids. That is the missing puzzle piece. How to help them be who they are without all the road blocks.
But if you take the road blocks away, autism is still there.
We aren’t fighting autism, we don’t hate autism.
What we hate and fight are the road blocks.
I know, it was ridiculous of me to butt-in and try to preach. I actually had written something much longer at first but deleted it. I even told myself to let it go, because I know it’s generally not what a person means when they say “I hate autism.” But I couldn’t stop myself. I feel like this is something that needs to be addressed.
Please forgive me for such a long winded, preachy, rambling message. I’m quite embarrassed now. But I feel like it’s too late to just delete and forget this whole exchange. What you wrote did make me cry. It’s really strange how a screen can make you forget you are talking to a living, breathing, thinking human being. I’m sorry for any inconvenience this letter may have caused you, I know your time is precious. Please have a great week, and accept a big hug from me.