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

Friday, October 18, 2013

Not the Lie Most Expect

Trigger Warning: References to institutionalization

I have a confession to make. When I was asked about disability and accommodations on my paperwork for studying abroad, I lied. No, I didn't say I needed things I don't need. That... I don't know of anyone who's done that. But I still lied.

Other disabled people can probably guess what I did. For those of you who are confused: I described my disability as causing fewer challenges than it actually does. I was honest about what formal accommodations I need in a classroom environment, because that's actually not much of a much, but as far as what my being autistic can mean for study abroad in general? I wasn't entirely honest.

You might be asking "why would you do that?" Now, Neurodivergent K can probably tell you just fine: she got kicked out of a class for saying she's autistic. I wound up not going on a study abroad program in high school because I was honest about the shellfish allergy that I... somehow grew out of? Yeah, that happened. But I was honest. I told them, "I may not be able to stay with a host family unless allergies can be explained to them properly and they get it. I always need to be allowed to refuse to eat something if I believe it may cause a reaction." I admitted that I was not going to trust them to determine if something was safe for me to eat or not. The other candidates for the program got interviewed one on one before acceptance. I got interviewed by all four teachers involved in the interview process at the same time, and 90-ish percent of the interview was detailed questions about the shellfish allergy. I answered honestly, every one of them. I was not on the trip.

That's the problem. Honesty gets you kicked out of stuff "for your own good" without ever getting the chance to show your competence.

I didn't want that. So I didn't answer honestly as far as what I have problems with. Frankly, if I had, I've got an idea what would happen. The question wouldn't have been, "Can she study abroad?" It might have been, "Do we need to call adult protective services?"

No, really. What are some of the reasons people give for why someone needs to live in a group home, or with an aide, or whatever else? I can think some.

  • Trouble bathing
  • Trouble keeping self fed
  • May injure self or others
Those are really general. Some that might be more specific:
  • They might walk in front of traffic
  • They might hurt themselves cooking, maybe spilling boiling water on themselves
  • Doesn't "fit in" because of "weird" autistic behaviors
  • Maybe lying down on the floor, considering that folks get pissy about that in institutions?
Now here's the thing. My exact reasons and ways I do those things might not be the ones you think of first, but guess what? All those things. People who know me would think the idea of my needing to live in a group home or something of that sort is ridiculous. I'd agree. I need no such thing. With proper supports, neither do the people who actually live in them. But the fact remains: A lot of the problems people give as the reason for needing a group home are problems I have.
Executive dysfunction: it's hard for me to shower daily and get three meals in. Yeah, it really is.
I've spilled boiling water on myself enough times that it's not even a surprise anymore when it happens. Not even joking.
I've run out in front of traffic without realizing it before, and I have friends who can attest to this.
I've picked at and popped my acne and yeah it bleeds and yeah by the standards of the system that counts. I hurt myself.
I've layed down on the floor in public. It's a thing that I've done. 
Autistic stuff definitely makes me not fit in. All those things. Been there, done that, got the T-shirt. 
Why might I lie about how autism affects me? Oh, I dunno, maybe because I prefer the question remain "How can we make studying abroad accessible?" Yeah, I think it's that.

1 comment:

  1. Tom here. I'm a HFA. Extrovert. Confidence not a problem anymore--much anyway. Always had a problem with obsession and not knowing the breaks in convos. I debate whether to mention my disability to people--your post triggered that issue. My family needs to know. Friends. Maybe the people who own the studio I dance at mostly. That's the debate. Don't want to scare them and don't want to be a skunk by saying inappropriate things to their other customers. Figured out that I need a coach/friend with me. Take it slow. Most normals don't want to take the time to tell you that you said something inappropriate or explain why it was inappropriate unless they care about you.

    Thanks for you blog.


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