05 November, 2009

Kinds of Autism, part two

Of course, I haven’t always been ≤1, but it’s hard to really use these terms when you’re talking about kids--because for example it is not considered appropriate for an 8-year-old to walk around a city alone, so by my rubric all 8-year-olds must be at least 2. I think that I became ≤1 at a later age than the average person. But I was mostly around 1, with occasional rises to 2, when I was in my early teens; then I started working hard at about 16 and I dropped myself to .7, which I would describe as a very conscious act of charming daffiness. I guess I should say, I don’t think anything under 1 really exists; I’m not sure that anything under 1 can be someone’s true self. But you can keep it up for a long time. I do. Actually, I’m not .5 at my regular college because everyone is so weird there and everyone knows each other, so I get to sort of flip around from 1 to .5 and sometimes even get higher than 1 when I need to. I miss it there so much.

Usually I do not get to anywhere near like 2, but I can remember a time since I’ve been in college when I got there. I had a really stressful summer after first year, and when I was at the Holiday Inn with my parents on the way back to school, I realized that one of my best school friends CK was at the same Holiday Inn. So we wandered through the halls talking on the phone until we found each other. I have very strong feelings about CK and I was so overwhelmed to be near him that I couldn’t even look at him. I think I might have put something over my face while I tried to get used to him being there. Then his mom and sister came in and asked if I wanted to go to dinner with them. I didn’t think that I could do the things you’re supposed to do when you go to dinner with your friend’s parents, but I didn’t want to stop being near CK, either, so, I went.

In the car, I think I sat next to CK and probably held hands with him, and did a kind of talking that is like holding hands--like, inside jokes, things without a lot of content. Maybe I expressed that I could not really talk. At the restaurant, I sat curled up next to CK and he touched my hair and talked to his mom and sister, and after I got more able to communicate, he helped introduce topics that I could talk about, like telling funny stories about me that I could elaborate on. By the time dinner was half over, I was back down to at least 1.

But this doesn’t happen very much, so does this mean I’m high-functioning? Hardly. It’s not an accident that the lower numbers get the more my definition of them becomes about what a person looks like when they are outside. One reason I am .5 in Edinburgh is that I spend a lot of time in my room playing Solitaire, jumping all over the place, and staring at walls. Also, I think I might fail some of my classes because I am not good at planning, and the nature of being at a big university in a big city is that no one is checking in with me or helping me plan. My number chart is mostly about how well you function in society, it’s not really about how you function in any other way.

At college, even though I am like a 1.2-.7 depending on the context, I would describe myself as high-functioning because I have a pretty easy time making and keeping friends, doing schoolwork, and basically looking after myself. None of those things are true here so I am not really as high-functioning here even though I look more normal. Also, there is a kid at my school who is at least 1.3 all the time, even with strangers, and he’s really popular and involved in all kinds of things and seems really happy; he’s at least as high-functioning as I am if not more so.

When I watched Autism is a World, I remember thinking that if I had aides who kept me from getting into stimmy states when I need to do homework, I’d have an A- average too. I don’t see how Sue Rubin is lower-functioning than me across the board when she has enough support to do better in college than I have ever done. This isn’t saying that I would rather be Sue Rubin than myself; if I understand her correctly, I think she is pretty unhappy about the fact that, as a 2 person, she will always be perceived as disabled by other people and frequently have them treat her differently, even insultingly, because of that; and that she has to rely on other people’s help to communicate. I am really glad that that isn’t my situation, because even though 2 is maybe not objectively worse than being ≤2, we live in a society where it’s a lot worse. But I’m just saying, looking normal is not high-functioning.

I went to high school with a boy whose brother is autistic and whose parents are involved with Autism Speaks. A while ago, my mom contacted his mom to see if she could help me figure out how to get a job babysitting a kid with autism, or something like that. My mom mentioned to the other mom that I had AS, and reported back to me, “She said, ‘I would never have guessed that Amanda had anything.’”

I am absolutely sure that this was meant as a compliment and not in a critical way, but my response is: number one, I don’t even remember meeting you, so how would you even get enough of an impression of me to guess? And number two, when you met me, I did not have any friends, which I think is a pretty good indication that something was wrong with me socially. It’s true, even if you asked your son, who I knew to say hello to but not any better than that, he might say that I didn’t seem to have anything either. It’s not like he was cataloguing whether I had any friends. I’m sure many people who knew me to say hello to were not consciously aware that I didn’t have any friends. So, awesome, there I was at .7, looking normal, earning pending compliments for my mom--but I wouldn’t say that I was high-functioning. What does that even mean if a person with no friends can be high-functioning?


  1. I think it's all relative to an individual. Do you think, too, there are peeks and valleys all over the grid as far as our strengths and weaknesses as individuals? It seems incredibly obvious to me that individuals, even on the spectrum, will simply be "different" from each other. I have also concluded that what people see on the outside is not always an indication of the inside. People are affected in different ways. For example, I have a list of birth defects and I believe they go along with the fact that I have autism. My skeletal system is asymmetrical, so-much-so that I had surgery to reconstruct my upper and lower jaws when I was about twenty seven. Now, it was a long time before I could get this done and I think this has to do with my appearance. Some of my features offset the deformity, so some people had trouble seeing it. The team of physicians at the university, on the other hand, used a high tech model of my cranium as a teaching tool. I don't recall the name of the disorder the doctor said I have, but he said it is a mild form of it and that, in more severe cases, patients have to have their cheekbones, foreheads, etc. rearranged, too. People would not know this about me just by looking at me. But, medically it is an indication of other abnormalities. And I am twice diagnosed with autism. Honestly, I am one of those who does not believe in AS vs. HFA vs. Kanner's Autism. I think people function differently from each other--PERIOD! I know people with autism who have a payee, yet they manage money better than their NT housemates, and so on. I totally agree with you about fluctuation and functioning being relative to each moment or to situations. If one person has internal structure that causes him/her to jerk due to neurology, then people will judge based on what they see. Another person can have the same sort of symptoms in the brain, but not have the involuntary muscle movement, so people looking at them will assume normalcy (whatever that is).

  2. I can absolutely fake a .5 but it is very draining and I have so many internal difficulties with processing language, anxiety, etc. that I would consider my true number to be on or very near a 1 most of the time and on my bad days definitely greater than 1. I have to take naps especially if I have a social event in the evening. If I had to sustain any kind of social interaction for an extended period of time every single day I would come across more like my true number 1 rather than a .5. When people tell me I appear fine it is because I planned the interaction in advance and got plenty of rest/downtime/non-social stimulation before hand. Seems to me that the term high functioning essentially means that someone has good faking skills. It also seems like a cop out and gives other people an excuse not to accept someone's ASD or provide services.

    That reminds me of the poor girl at Target that I yelled at the other day because she wouldn't let me buy quarters. I should not be allowed to go to more than one store in the same day. My limit is two stores. Not a very large window of flexibility there.