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.

Friday, December 7, 2012

To "I don't know if I can handle autism"

You can.

Are you an autistic person yourself? If so, you've handled it your whole life. You didn't suddenly become a different person when you were diagnosed. Whatever coping strategies you had before that worked, well, they still work. Now you get to talk to other Autistic people and see what worked for them too!
Dealing with the stuff society chucks at you because your autistic is ugly. I know it is- I deal with it too. We all do. That's not part of "handling autism" itself, though it is relevant- if you are autistic and only recently found this out, chances are that's the part that is actually going to get harder. Society tends to be a bit nicer to people when they don't know they're autistic, for some reason. It's like, if you are capable of being normal and choose not to that's OK, but if you are neurologically incapable of normal or nearly so, you need to be normal? Yeah, that doesn't make sense. I would say to ignore them, but it's not always possible or safe to just ignore them. Do what you can to keep it from affecting you too much, and don't feel bad about cutting people out of your life if they act that way. You don't need that.

Or are you a younger sibling? If so, I'd bet that you already know your older sibling. Nothing's changed.
Older sibling? Still, nothing's actually changed. Your sibling is still your sibling; you just know about the autism now. Twin? If you're identical twins, you're probably autistic too, actually. You've been handling it your whole life, one way or two ways. If you're not identical twins, it's not much different from being an older or younger sibling- your sibling hasn't exactly changed. You just have more information now, which means you have a better shot at figuring out communication and understanding. If you can reach the point where autism doesn't feel like an enemy (Please, please reach that point or at least fake it for your sibling's sake) then it may even help with acceptance of who your sibling is.

Or are you a parent of an autistic child who was just diagnosed? That seems most likely, given your search. You've just entered a world full of false cures, tragedy talk, and evaluations. That is not a fun road to walk... but none of that is itself autism. Autism is the way your child is- remember the wonderful child you remember thinking you had? You still have that kid. Your child isn't locked up in a shell of autism or anything like that. One of the big things to remember is that fighting autism is fighting your child- work with your autistic child, not against an inherent part of your child's being. One of your hardest battles is going to be getting the school to do the same, and it doesn't always work. Home schooling is one way that many parents have handled that- there are home school groups made up of parents of autistic kids around, and joining one of them might be helpful if home school is the route you want to take. Don't lose heart: autism is not the tragedy that many people tell you it must be. Your child is not broken, your child is not a tragedy, your child is not destined to be a burden. You can help your child grow up to live a happy life as long as you accept that happy and normal are not the same thing. In the case of autistic people, the two are often mutually exclusive, and I'd rather be happy than normal any day. Your child probably has the same preference. The goals you have for your child are your goals, but the goals your child has for themself are their own- make sure your child can achieve their own goals, and that's what success looks like.

4 comments:

  1. Hello,

    I love your blog. So many things to think about that I've never considered.

    I completely agree with you about embracing Autism, and separating normalcy from happiness. But watching my sister raise my Autistic niece, I understand the initial shock after the diagnosis. In my nieces case, Autism means she can't communicate. At least not yet or in a way that's clear to her family (she's four). And I feel like it's a natural reaction for a parent to mourn that.

    It's not so much Autism that my sister can't handle, but how isolated her daughter is.


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    1. I think that "Don't Mourn For Us" has a good answer to that last bit- yes, mourning might happen, but it's not for the kid who is there. It's for the kid who was expected and never actually existed, and it's for shattered expectations. It may happen- it just needs to be kept away from the kid who IS there.
      And part of the initial shock stuff? It's from things that I and a lot of other Autistic people are fighting against, speaking and not- the way doctors tell families about it and the fact that the resources they give are all very doom and gloom definitely contributes to the whole shock thing. And the fact that so many teachers don't get the whole "AAC is actually a really good idea, kid is more likely to learn to talk and do so sooner if you teach AAC stuff" thing makes learning to communicate so much harder for so many of us.

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    2. Yes! We hadn't even heard of AAC until recently, which I just sort of stumbled into on the internet. All of her doctors and therapists seem really negative and...oblivious.

      It's hard for me because I don't really feel qualified to question their advice. I'm not a doctor or anything, but I *have* studied general child development. I wouldn't require any 4 year old to stay on task for as long as some of my niece's therapists want her to-- I doubt that Autism grants preschoolers super attention spans. But she's not my daughter, so I don't know her as well as my sister. And I just don't know.

      All of us just want to do right by my niece, and all of the resources and information we've been given ais confusing and conflicting. It's really frustrating.

      P.S. I hope I didn't come off as a jerk. I loved finding your blog because of your positivity and strength, and it gives me a lot of hope for my family.

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    3. Negative and oblivious is pretty typical. That's actually why I mentioned AAC- It's one of the most important things you can teach to a person who isn't talking, and yet NO ONE seems to think of it. Like, that should be Priority Number One. And no one does it. And it pisses me off.
      Autism can grant super attention spans for things that *we* are personally interested in, but in general? Meh. If anything, it might look less because of being less willing to fake it once we've tuned out. And good on you for realizing that being autistic probably shouldn't lead to somehow higher demands than anyone else gets. It never goes well.
      But yeah. The resources mostly suck. It's one of the things I am consistently frustrated with. And you sound more like "frustrated by lack of good resources that can help with actually helping this kid" than like "being mean to me"/"being a jerk."

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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.