Autism and Me

Autism and Me

On my YouTube channel, someone suggested that I talk a bit about the difference between visible and invisible disabilities.

I have never called myself disabled.  I have an interest in people who have physical disabilities and I always have, but there is another kind of disability that is unrelated to that interest of mine. Up until last year all I knew was that I was a bit odd.

Then as I hit a wall of depression and struggled back from it, I started talking to and being asked questions by people who knew about things that I didn’t: like Asperger’s.  I’d heard the word, but didn’t think much of it.  We as a society have a lot of ideas about what it means to be autistic and it usually involves something like a lack of mental capacities.  I didn’t think I had AS because I’m very smart.

It turns out, though, I do have it.  Some of my weird habits and behaviors are related to how my brain is built and I didn’t realize that other people’s brains are built slightly differently.  I’m extremely high functioning, as they say.  I have rarely felt debilitated by my weirdness.  It seemed crazy to me to call myself disabled.  Wasn’t that an insult to the people who couldn’t walk?  Or the people with more intense autism who could not care for themselves?

Then I discovered http://flutterflyinvasion.tumblr.com and I learned some new things about disability politics.  I learned about distancing.  That when I am reluctant to call myself disabled, it’s showing my lack of respect for that word.  I let other people take that label, but I’m too good for it?  Resisting it is, in a way, saying that I’m better than those poor schmucks with visible disabilities. “Q) Why is the question always “is autism a difference or disability?”  Why can’t it be both? A) The unquestioned assumption in such statements is that disabilities are always unambiguously bad things that need to be fixed.”

Avoiding the word “disabled” is like saying I’m ashamed of it.  Hiding from saying that I have Asperger’s is acting ashamed of it.

I’ve very new to this.  There are some advantages to being diagnosed late (at age 29).  No one thought of me as a label, as a disease, as something different. I’ve always just been Ruth.  And all my friends know that Ruth is a little eccentric, but that’s just her.  It’s interesting to see now that this label is put on me, that my friends struggle to reclassify me in their minds.  They try to reconcile the idea of austism with their knowledge of me being me.

I’m glad that I didn’t have the label as a kid.  Even though there were many times I was pushed past my breaking point, or I felt shame that I had so much difficulty dealing with textures and foods and socializing, I’m glad that no one was making assumptions about what I could and couldn’t do.

This may seem like a very surprising admission to you.  I think that I do not come across as autistic online.  There are parts of me that you don’t see, though.  I write so much and communicate with writing because I’m very poor at communicating face to face.  I can’t find the words I want, I can’t make people understand me.  Writing is the only way I feel able to connect with the world.  It is my tether to life.

Writing fiction has also taught me a lot that’s helped me cope with the world.  I’ve learned something about other people’s motivations by creating characters.  Lately I’ve even gotten pretty good at realizing when someone is being funny.  That’s a big change for me! People always said I didn’t have a sense of humor because jokes go right over my head. I take things too literally. I’ve started to pick up on the cues that people give that they aren’t being serious.  I think I’ve gotten pretty good at reading situations and people too.  Though maybe I’m not as good as I think I am, since I had a date a few months ago who said he thought he needed to spell out for me that there wasn’t chemistry. :-/

Autism manifests itself in many different ways. I won’t go into all the symptoms I have and all the ones I don’t.  I am not terribly debilitated by it.  I live alone, I take care of a dog on my own.  I’ve seen people with much stronger autistic traits that cannot do those things.  But to say that they deserve the label of disabled, but I do not, is to disrespect them.

Visible and invisible disabilities come with very different experiences.  I know that when I have a problem that is attributable to my AS, most people will just think that I’m making an excuse, though I only mean it to be an explanation.  They’ll think: She doesn’t have a brain difference, she’s just being difficult.  I notice that most often when I have a meltdown.

You’ve heard about autistic kids having meltdowns.  Well, autistic adults do too.  I have routines in place and ways that I deal with being out and about in the world, but if I get thrown off then I can lose control (and having a diagnosis, a reason for that, is really comforting!).  I’ve gotten good at recognizing the early warnings of that and getting myself out of public, but sometimes I don’t manage.  And it is humiliating as an adult to have a public meltdown.  People are confused and scared and stay far away from you.  When I most need help, that’s when people run away from me.

The funny thing is, I’ve worked hard and learned how to seem mostly normal.  So, people tend to say “You must not have Asperger’s, you don’t act like it.”  Not acting like it doesn’t mean not having it, as it turns out.  I learned to function and I’m glad that I did, but I do still need some leeway to do things that make me feel stable, even if that means not passing.

So, for the first time ever, I will say: I do have a disability.  I am Autistic.  I’m also the same Ruth that I’ve always been.

There is a video of me reading this essay at: http://www.youtube.com/watch?v=65NKTBse6K8

###

Things I’ve been learning from FlutterFly:

http://flutterflyinvasion.tumblr.com/post/7274868132/fuck-yeah-autism-spectrum-on-being-a-passing:

Autism Spectrum: On being a “passing” autistic →

shakethegoldenbarley:

When people praise me for “passing,” for being so “high functioning” when they find out I’m autistic, I still feel a bit of relief, a bit of comfort in knowing all my efforts were worth it. But I feel less and less of that relief and comfort nowadays, because all I can think about is just how painful it was to make myself “normal.”

To allistics: before you praise some one who is autistic who happens to be able to carry themselves socially for their ability to “pass” and be “high-functioning,” consider the fact that not everyone has to “pass” to be of value to society.

I know this post specifically talks about autism, but the “passing” phenomenon extends to other disabilities as well.  There’s so, so much pressure to be “normal” in our society that you’re praised for every little bit of disability you can erase, even if it’s not erased, just hidden so deep inside because you’re ashamed to let it out.  It’s why I get accused of being lazy for choosing to use mobility aids – I can pass, so therefore I should, even if it causes me pain/exhaustion.

http://flutterflyinvasion.tumblr.com/post/8951598721/tired-of-all-the-distancing-bullshit-that-goes-on-on:

Tired of all the distancing bullshit that goes on on the cerebral palsy tag

Similar to what goes on with the autism tag.  “Oh, I’m MILD, I’m not like THOSE PEOPLE!” ughhh

 

11 Comments

  1. I really enjoyed reading this, Ruth. My son (nearly 10) was *finally* diagnosed with Asperger’s this past March. I say *finally* because I knew, without a doubt, he was autistic early on, even though I had one heckuva time getting anyone to listen.

    Like you, he is very intelligent and high functioning. He struggles with many of the same things you do, it sounds like. (He’s also been diagnosed with Central Auditory Processing Disorder and generalized anxiety, for which he takes daily medication).

    I don’t shy away from telling people he has Asperger’s, especially when he is acting a bit “different” or having a meltdown in public. Like you, it’s not an excuse; simply an explanation. He doesn’t realize how some people look at him, but I sure do. As his mom, it’s very painful.

    I’m glad you have your diagnosis. If anything, it affords you certain rights that will help to “level the playing field.”

    • RuthMadison
      Sep 17, 2011

      I can’t imagine how hard it must be when people make assumptions about your son. They probably think that he wouldn’t have meltdowns if you did something differently! It’s so impossible to explain that overwhelmingness, the feeling of being assaulted by sensory input. Thank goodness that he has you, who knows about it and can protect him from some of that ignorance.

      It has been good for me to finally know why I have trouble connecting with people and that they don’t seem to understand me. The best thing is that it makes it easier for me not to get angry at myself for being the way that I am.

      Thank you so much for writing. It means a lot to me to hear supportive words.

  2. GirlWithTheCane
    Sep 17, 2011

    Hi Ruth

    This is a really thoughtful, well-written post.

    I’m happy that I’ve been able to get to know you, and all the different things that make you “you”, through your blog and writings. Asperger’s included. 🙂

    Sarah

    • RuthMadison
      Sep 17, 2011

      Thank you! I really appreciate that. Feeling down today as someone was trying to be funny online and I didn’t get it and the guy started making fun of me for not getting it.

      I’ve certainly been enjoying your friendship!

  3. Paul Rice
    Sep 18, 2011

    Thank you for sharing your story.

    You forgot to say that you’re also funny. My teenager was ROFL when he saw the floating dumpster try to attack your car earlier this month.

    • RuthMadison
      Sep 18, 2011

      There’s not many people who think I’m funny! I do try, though 🙂

  4. sharon king
    Jan 17, 2012

    thanks for this I really enjoyed reading. I am a mum of three children on the autistic spectrum. If you have seen the BBC’s “My autism and me” film, Rosie and Lenny are mine! I also have another little girl, Daisy who wasn’t featured on the film. We have done lots to positive awareness about autism, I find that lots of people are aware of the problems and difficulties but few people talk about the special abilities and wonderful personality traits of autistic people. Please take a look at our website xx

    • RuthMadison
      Jan 17, 2012

      Thanks so much for commenting! I’m interested to check out the video, I will look for it.

      I know for most kids a diagnosis is a wonderful thing because then people can work with you and understand why you’re having difficulties. I just know that for me and the situation I grew up in, I think it would have caused more problems. Depends on the people, always! 🙂

      I do wish there were more talk about the value of AS. We don’t as a society want to become homogeneous, that’s very dangerous. A variety of understandings of the world and ways for the brain to process information is a good thing. I know it can be really rough on parents, particularly with kids who are on the more severe side of the spectrum, but I do believe that the existence of those individuals is a benefit to society.

  5. sharon king
    Jan 17, 2012

    ps I think that things are really changing for children on the spectrum now. you mentioned that you are glad that you didnt have your diagnosis as a child, and you probably have a valid point – but attitudes in schools and in society at large are really changing now. My daughter talks openly and honestly about her condition all of the time. We do say condition, not disability (even with my younger two children who much more severely affected and will never be independent) largely because we choose to focus on what they can do rather than what they cant. Please watch Rosie’s film made for BBC Newsround. google “My Autism and Me”. Thanks Ruth.

  6. doug
    Feb 24, 2012

    I found your essay having googled “learned how to seem” which is a snippet of a line in The Madness of King George where, at the end, the King holds on to his job after “therapy” for his “madness” He makes an appearance at Parliament and someone says “you seem well” and he replies, “yes, I have learned how to seem.” I was always touched and intrigued by that line… and here you express a similar thought. It’s how I’ve pictured to myself my own attempts to fit in, though I find it wearying and disappointing, it does seem(!) to be necessary.

    • RuthMadison
      Feb 24, 2012

      What a beautiful line! That is it exactly. I have learned how to seem normal! I’m glad that you shared this story with me.

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