Friday, August 13, 2010

Thoughts from the bus

Countdown: 54 minutes until I see Leigh!

My internet is a bit spotty on the bus, and my feet keep falling asleep from crossing one leg up to hold my computer, but let's see if I can't get some frustrations out in order to pass the time as I ride.

I actively participate in two autism/Asperger's message boards; one is a board for parents of children with ASDs, and the other is a highly-popular board geared toward teens and adults, mainly those with Asperger's. The former, I find, is a great resource where I am accepted and can exercise my brain as I try to help parents to understand their children. I love it there.

The latter attracts... a different kind of poster. At this board, I find the group mentality to be immensely frustration at best. I'm starting to wonder why I even go there, because my voice is lost among the nearly 40,000 members and certainly not valued as it is at the parents' board. My ideas about ASDs veer from the group mentality, and when you combine people who lack social skills with confrontation of ideas with which they do not agree, you get a whole lot of nasty, sometimes.

What, you might ask, are the commonly-held (I refer to them as "Aspie") beliefs which drive me crazy?

1. The world is divided into "us" vs. "them." Either you're "one of us" (read: autistic) or you're an evil NT (neurotypical, aka, non-autistic). "We" are rational, logical, intelligent creatures. "They" are wildly emotional, confusing, mean-spirited beings who do nothing but wish us ill will.

2. "Us" is further divided into "Aspies," "HFAs," and "LFAs." Basically, the idea of functioning labels. I hate to break it to you folks, but functioning labels, for most of us just don't work. First of all, there is no medical definition of high-functioning and low-functioning. Some say it's based on the absence or presence of mental retardation, some say it's based on ability to communicate verbally, others base it on amount of independence. But then what about people like myself, and so many others, who fall into different cagetories on different days, or who have skills that are all over the place? Yes, I can work and drive to some extent, but I need fairly extensive support just to get through a day and will likely continue to do so for years to come. Let's try to describe people in terms of their individual strengths and weaknesses rather than slapping a catch-all label on them that is likely very misleading.

3. Autism is not a disorder, it's just a difference. I believe that many people on this website are subclinically autistic, but having pushed for a diagnosis, have been labeled with Asperger's. They work, they marry, they have children, and then they speak for the entire spectrum when they say, "We're not disordered, we're just different!" The fact of the matter is that we are significantly deviant from the statistical norm (by definition of carrying a DSM-IV label). The world is not going to adapt to us, therefore, if we're going to function, we must learn to adapt to it. Which brings me to my next point...

4. "NTs" are the only reason we can't function in society. Someone on this message board actually said something to the effect of, "Autistic melt downs are always caused by NT misbehavior." Excuse me? I melt down for many reasons, and yes, occasionally it's due to the actions or words of another human being (autistic or not does not matter), but far be it from me to blame my melt downs on others! Also, it matters not whether I live in a society of autistic people, nonautistic people, or no people at all; I would still need considerable help day-to-day.

5. "Curebies" want to eradicate our existence and should be banned. This one is complicated. See, the fear is that if it becomes possible to detect autism prenatally, that mothers will abort their autistic children-to-be. Also, there is the fear that if a cure is discovered that it will be forced upon us. My belief is that while it may someday become possible to prevent autism, I don't think we'll be finding either detection or cures anytime soon at all. We haven't found either for type I diabetes, which is far, far less complicated than something like autism. I don't think anyone is doubting the positives that autistics bring to the world, but what about the ways in which is holds us back? What about those of us that wanted to be, could have been doctors, but due to our social, communication, and sensory difficulties find it almost impossibly stressful just to work 20 hours a week in our favorite place in the world (the animal shelter!). For the record, while I wish a cure would have been available to me as a child, I don't think that I could accept one now. I've become too comfortable and enmeshed in who I am as a person on the spectrum that I wouldn't know what to do with myself. However, I would never seek to withhold that opportunity from someone who did want it.

There is more, but now that I am sufficiently carsick, I'll leave you with that to digest.

Countdown: 33 minutes!


  1. This is VERY well said and thought out. I like your ability to "tell it like it is". You're right, we live in an NT world, so to get along in one, we'll have to figure out how we can best adapt to it.

    Sorry you're carsick, but on another note, it sounds like you might be doing really well on your road trip. Is that the case? I hope so!

  2. YAY!! GO LYDIA!!

    I have found with my two that I get a good interaction in my world if I go into theirs and walk out with them, so to speak, by which I mean I do what they're doing (for example, laying on the bed on your back with legs and arms up in the air and bouncing on your back - try it, it's really good fun!!) and when we have shared their activity for a bit we go and do my activity - like go shopping, have dinner, have a bath. I have long felt that whilst I do expect my girls to behave in a socially acceptable manner out side the home they can get to do their own thing, to a wider degree, in their own space.