What I want to talk about today is something I have been thinking about for awhile. It's how hierarchies are developed in the disabled world, especially when it comes to those with autism spectrum disorders.
A side discussion on this started in the comments section on AutismVox, but I thought it deserved a topic of its own.
Developing hierarchies within minority communities is nothing new. Within the African-American community in the US, skin color has served for a long time as one of the primary factors in developing an internal hierarchy within the community. Those who were light skinned were looked upon as more cultured, more civilized, and more likely to succeed. Conferences are held to study how this still goes on today.
When we were looking to adopt, we became acutely aware of adoption's dirty little hierarchy. Basically the main pecking order (for popularity of children) goes like this: white > asian > light skinned hispanic > mixed race african american > black. Native Americans are generally left out of this, as their tribes can (and often do) veto adoptions outside of the Indian Nations. There are also two other factors that dictate "desirability" and popularity. The first is healthy beats disability, and the second is babies beat older kids.
Sometimes the above factors interact to bump a kid up or down over another, but for the most part, skin color rules. No one ever talks about this much in public, but when you're looking to adopt it's communicated to you by the system (agencies, lawyers, and even some other parents thru adoption).
So one of the "interesting" factors that has emerged as we travel this journey with autism is of how hierarchies are formed within the autism community. It would seem that, just like society as a whole, verbal beats non-verbal hands down, in a big way. When people talk about "high functioning" vs. "low functioning", often the only major difference between the two groups is whether the person is verbal or not.
Probably the other big factor that enters into this is whether the individual conforms to societal norms for civility. Thus throwing a tantrum, screaming, yelling, stomping your feet, etc. instantly loses you 50 points on a 100 point scale. Not only is this valued in society as a whole, but even when I've been at functions where there are many autistics, the parents of those kids "acting out" are still looking around furtively, while some other parents seem to have a smug look about them. While the "guilt" of the parent of the kid acting out may be a holdover of how society treats her everyday, where does the smugness of the parent of a kid on the spectrum not acting out at the moment come from? [As a side note, I must confess that when I am in public and there is a NT kid "acting out", I sometimes am guilty of getting a little smug-right or wrong, I consider this different than looking down on "one of our own"].
I think that the only other major factor that enters into the equation of where one sits on the "autism hierarchy" is whether one has complete bowel/bladder control.
Other things that you might think are important don't seem to matter quite as much. Level of academic achievment, ability to play games, and ability to communicate matter, but don't seem to rise to the level of importance as the first three things I've mentioned.
Perhaps it's just innate, that as humans we want to a)place everything into a category, and b)be competitive. But I think we hurt ourselves, our kids, adult autistics, and everyone else in the "autism community" when we set up petty little hierarchies like this. Most of the "normal" world will probably have the same stereotypical view of you/your kid once you say the word autism. Trying to show how you are better than "those other autistics" hurts us all, whether you're talking to someone in the outside world, or someone within the autism community. We'd be much better off trying to change the stereotype that society as a whole has of autism. It's a harder (and slower) process, but in the end will serve us all much better.
Me- Joe, husband of a great wife, and dad to two great kids, who were both adopted at birth.
Liz- My ever understanding wife, who manages to wear many hats (mom, advocate, therapist, teacher) for our kids.
Buddy Boy- Born in 2000. Funny, intelligent, inventive, and autistic. Loves machines.
Sweet Pea- Born in 2002. Typical little sister. Competitive, outgoing, and smart. Loves anything pink.