Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Sunday, September 2, 2012

I understand fine

You have a child who is not the one you were expecting. I know because you wouldn't act this way if you had been planning on an autistic child. Really. If you'd expected an autistic kid, you'd be much better prepared to deal with sensory issues and meltdowns and all the challenging parts, and you'd be better able to see the awesome parts.
So. Your child is not the one you expected. Maybe she doesn't speak. Maybe he screams every time you try to take him to the grocery store because it's loud and bright and crowded there. Maybe there are loud public meltdowns on a regular basis and you don't know why, but you are embarrassed and you just don't want to deal with them because it is so embarrassing. Maybe you can't get her to stop flapping no matter what you do, and you're sick of the funny looks. Maybe he bites. Maybe she smears poop on the walls. Or sometimes the parents who are talking about how I can't possibly understand their position has a child much like myself. Fairly quiet, but very odd. Everyone can tell that there is something up with the kid besides just giftedness, but no one knows what and you wish the kid could just be normal for once. Whatever the case may be for what your autistic child is like, he is not the child you were expecting. He is not normal and never will be.
You've probably been told that the only way to help him is to make him normal, which is both a lost cause and a bad idea.  You probably can't understand the concept that normal might not be the magical solution you think it is, and the idea that your help is making your child's life harder is probably unbearable. So instead the autistic adults who have been in your child's position are wrong and mean and want to hurt your child. They are telling you that you shouldn't be pushing so hard for that mythical normal which is your only hope is not all it's cracked up to be, after all. Oh, and we can't possibly understand how hard it is to get your kid out of the store while he melts down or to clean up the loop that has been smeared. And this idea that those actions might be communicating something. It's simply preposterous!
Except that we have had to get ourselves out of the store while melting down, and we can't come back later without ourselves. And we've been the ones doing all these things. We might not know the exact season your child does them, but we do know that it means something because it meant something when we did them.
So yes, I do have some ideas on what your position is like. You aren't the first parent I've ever dealt with. I actually do know what autistic kids can be like. Some of us autistic adults even have autistic kids of our own. Not me, yet, but I'm planning on kids and I know autism is largely genetic. Which means that I am planning to be in a position similar to yours. The big difference is that I will be going in expecting autistic kids, and so I will have no sense of loss if and when I get them. And yes, I do understand your position. I just also understand that it's not your position that really matters if we care about your child's well being. It's your child's position, which probably isn't that great if your answer to everything people who have been in your kid's position is "But you don't understand my position! "

No comments:

Post a Comment

I reserve the right to delete for personal attacks, derailing, dangerous comparisons, bigotry, and generally not wanting my blog to be a platform for certain things. As long as we stay within those ranges, discussion is AWESOME.