Wednesday, April 3, 2013

Autism Aware and Accepting

* April is, according to several sources, Autism Awareness AND Acceptance Month. My feeds for the last two weeks or so have been chock full of memes, statuses, jokes, etc., all in the name of Light it Up Blue (LIUB) and Autism Awareness Month. This is, for all intents and purposes, "our" month. I wasn't going to write about this... but I changed my mind and decided to ramble. This is what Autism Awareness is for me, a neurotypical mom to an Autistic boy.

When I hear "Autism acceptance/awareness"... I see in my mind's eye my little boy playing with his trains, speaking kind of like Yoda, scripting, stimming, and sometimes wanting to be a part of this huge world that doesn't really understand him. When I hear or read those words, I think simply of Morgan and how far he's come to beat odds which someone who didn't really know him set forth. That person was me, not knowing Autism.

I wish someone had told me, when I first heard about Autism in relation to my son, to not be so afraid. That there are no set rules in Autism except for the ones my Autistic son might make. To never believe those godawful things, barriers, and statistics because my son would surprise me to the point that I would tuck his baby book into the book case and just stop caring about filling it out.

I wish someone had been there to tell me that at some point, I'd feel better about "that Autism stuff" as I remember someone (me) calling it. That I wouldn't cry so much one day and that my tears aren't for a life lost as some say, but for a boy in the here and now who is struggling in our neurotypical world.

Once I let go of what I've always held as a "perfect" childhood for Morgan, it refocused me and made me concentrate on what is important. This is not to say that I don't get depressed momentarily or longer about his struggles... it just means that I accept my son. I accept that he is Autistic. This does not mean that my dreams for my son disappeared, but it does mean that he is leading my hopes and dreams for him based on how he is and what he's into.

Acceptance of Autism and awareness of how actual Autistic adults address themselves is also what makes me mad at times when I see seemingly innocuous memes or statuses about Autism. Lists of how one should speak to Autistics... person first language...  I get that I'm not like all parents whose children are somewhere on the spectrum but I have a hard time accepting that I'm wrong for calling my son "Autistic" instead of "a person with Autism." I'm not wrong for that, I just cannot, in my mind, separate Morgan from Autism or Autism from Morgan. It is what it is. He's Autistic. It's taken me long enough to say this and I'll keep saying it.

I think that awareness campaigns are, in themselves, good things. Bringing attention to something like Autism needs to be done because there are people outside of the "Autism bubble" who really have zero idea what Autism really is all about. However, I don't kid myself and think that one day or month will bring about any monumental changes to our way of thinking, our schools, our hospitals and their treatment of Autistics, or our government. People need to also be aware, too, that this month can be painful for some- Autistics in particular. I get where they're coming from in a way. I, too, believe that Autism shouldn't be represented by a screaming six year old. Kids grow up to be adults. Autistic kids will grow up to be Autistic adults. Remember that.

I feel as if sometimes I must not speak up for how we raise awareness in our house because maybe, just maybe, I'm doing the wrong thing. People have told me this and really, I tend to not agree. However, I do check myself when talking about Morgan to strangers. Do I really need to state he is Autistic? No... I don't. But I do. It's been said that I'm labeling my child and that this is a danger because it might give him a complex of who he is and what he can or cannot accomplish. Well, I see it as this: my son is Autistic and other than being open about certain situations he might not be able to function in without a sensory overload, I don't set limitations on him. Not that I can see, anyways. Believe me, I'm my own worst critic.

When I think of Autism, I think of my son. He's what I have to go on other than the hundreds of books I've read or "experts" I've heard. He will be my face for Autism and that face will change year after year, just as his body does. But I will steer him and others toward the voices of the Autistic adults who have lived what he's lived, experienced things similar to what he's experienced. I'm not the expert any more than any other parent out there. This is another form of acceptance for me...

I think of my boy who will proudly say, "I'm Autistic." That's his acceptance because his parents don't allow him to believe that there is anything "wrong" with being wired differently.

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