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

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Tuesday, June 11, 2013

Making My Own Mistakes

Trigger Warning: Abuse, death (not a result of the abuse.)

As a child, I was allowed to make my own mistakes. Some people refer to that as "dignity of risk" when talking about people with disabilities, when talking about special education. This came up because Sharon Lewis brought it up in her presentation "Disability Rights Movement & the DD System."
The context she brought it up in was initially for a good friend who used a wheelchair and chose to get herself into the shower every day. She was getting weaker with age (that's a thing that happens to most people, disabled or not) and her friends suggested that she might want more help. She said no, and one day she fell and died. Her friends were sad, of course, but they realized: it has been her choice, and they could not have made the decision for her even knowing what happened.
The next context mentioned was wandering, and how it is now a medical code. Julia Bascom said that there already are students with tracking devices, as people would use to handle "medical" wandering as opposed to changing the environment to make it safer and more comfortable. Or people would be restrained in response to escape attempts from abusive situations.
And this is a big one.
People leave places when they don't feel safe, or when they're bored, or when they would rather be elsewhere, and even parents who say their autistic kids wander realize that it is usually one of those.
I had arguments with my parents, on occasion, related to independence and them knowing where I was. Not loud shouty ones, more like debates. It wasn't over a bracelet with a tracking device, nothing so invasive. I didn't want (ok, flat refused) to carry my cell phone when I went running. I was probably 14. Not old enough to actually enforce said refusal legally, not being 18 or anything, but yes, it was still a flat refusal of this is not a thing I will do. I also didn't want to have to call if my friends and I were moving from, say, the park to the lake when I was out with them. I wasn't quite as 100% this is not a thing I will do on that one, but I got it too. And I got to take public transit alone.
I also got to go to China for a month and study/live with a host family when I was 16. If that's not letting me take a risk, I don't know what is. The host family had 3 students, the other 2 students spoke English but the host family did not. Also, they were used to college students, not 16 year olds. So I was treated like an adult. By the way, I don't know what the official line is or if there is one, but yes, a 16 year old can get a hotel room alone in China.
So I very much got dignity of risk, except no one called it that because when you're not labeled as anything besides gifted (my family and I played the "gifted kids are weird" card very effectively, with my family not even realizing that there was more to my differences than that until my official diagnosis.) The level of it I got was more than many of my abled peers got, honestly- there were quite a few parents who thought my mother was "crazy," to use their words. Because there are risks in traveling internationally alone as a 16 year old girl. (My flights were alone.)
And I made errors, and other people made errors that were outside my control. I went to the wrong Shanghai train station and missed my train to Beijing. I got lost in Beijing, multiple times. (I was alone the whole time I was in Beijing.) I wound up sleeping at the airport in Canada, on airport chairs, because my plane was delayed for 6 hours leaving China and that meant I got stuck in Canada overnight. 16 year olds can't get hotel rooms in Canada.
I had at-home errors, too, and at-home things that could be described as wandering. When I was probably 8, I walked back around an island looking for better rocks to climb, which really scared my dad. When I was 17, I got on the wrong commuter rail and wound up in the wrong town. (My mom didn't find out about that one until after the fact.)
But they were my errors, and I got to make them. And I was treated like a person who could make decisions with intent- if I left, it was assumed that I had a reason. (And yes, I did on one occasion threaten to walk out of a hospital that had not signed me out if they did not do so by 6am because dagnabbit I had school and a math meet that day. It wasn't an issue because they discharged me around 1:30am. So when people talk about how their kids would leave a hospital? Yeah, so would I, I just said I would and didn't wind up needing to.)


  1. It sounds like your parents allowed a lot of room for independence. I wonder how much would have been different if you were dx'ed earlier? With gifted kids, we treat them as "older" than their years. We presume they are much more competent. With autistic kids, it's the opposite - we usually treat them as much "younger" than their years. As a parent, it's hard to let go of the fear. I cannot imagine how your parents did that. Or at least not let their fear interfere with your opportunities. I hope I can do the same.

    1. I think that a lot would have been very different. I've talked about it on occasion, and I've contemplated writing a fictionalized guess at what would have been if the neuropsych when I was 9 dxed me instead of leaving some "findings" off the report and talking to my mom about them, like really happened. (The "findings" left off were autism traits that run in the family, like autism does.)
      I was fiercely independent. I think that them knowing that the most they could do on any of these things was make me wait until I was 18 was relevant to some of those. I did explicitly remind mom of that on a couple occasions, including China. I liked to play hardball with my independence/stubbornness stuff, still do.

  2. I love this. My 9yo autistic daughter is wanting to be more and more independent, and as hard as it can be, I don't automatically shut her down bc of her dx. She's gone on short bike rides alone. Walked the dog alone. Pays for things alone. I could just say no, bc she's autistic, and "what if", but then that strips her of her own dignity and doesn't much prepare her to be independent, which SHE wants. I see a lot of parents using their child's dx as the reason to say no, and it hurts to hear. It's of course important to know your child, but I think a lot of kids are way more capable than their parents give them credit for, and denying them to take any risks means they have no clue what to do when something happens that isn't planned.

    One other thing that struck a chord...being restrained bc of escape attempts when in an abusive or unsafe situation. We had that happen at school with my daughter. Restrained twice in a row bc she was being harassed by another student and needed to get away, as no one was stepping in. She was hurt in the process. She never returned to that school. Every child deserves better than that.

  3. I too was fiercely independent, and scared at how much control other people had over my life, and really, really hated that. And I was *both* left to deal with things on my own inappropriately, and was having my independence needlessly restricted, in different ways. I absolutely shudder to think how I might have been treated had I been diagnosed correctly.

  4. I think an important part of being allowed to make mistakes is being allowed to make mistakes without having them held over you forever.

    My parents let me risk making mistakes, alright, but there was always a hidden risk to it: if I screwed up at all, they would file it away and use it as tool to shame me into not wanting to do it ever again, or as an excuse to shoot other stuff down. "Well, if you can't even keep track of your wallet, how will you handle an exchange program?" for example (humiliating/victim-blaming me for having been pickpocketed at 11 to excuse refusing to send me on an exchange program I wanted to go on at 15). That sort of thing.

    By doing that, my parents hamstringed my attempts to gain independence because I knew if I did mess up it would be held against me forever. Even if it turned out okay in the end, or if it absolutely was not my fault (grown adults get pickpocketed - totally not my fault at 11 for having a criminal victimize me).


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