Sunday, February 22, 2009

Catch-22

Hello,

StatMom has posted about her young daughter Reese's cruel dilemma: precisely because Reese is able to sit politely at meetings (so far, anyway) and because Reese and StatMom have worked so hard to enable Reese to adapt as much as she has, Reese might not be regarded as autistic. That means she might not get accommodations for the problems she still does have and might always have, such as her great difficulty switching to another task before finishing the previous one. She may even get punished as a result.

StatMom is, understandably, a little miffed. And it's a little nippy in Alaska.

I understand that some people have an image of autists and Aspies as non-verbal, perhaps even spastic, people who can't live on their own or hold a job or even a conversation. Part of that has something to do with media stories about these disabilities. Some of those stories make a point of showing the most extreme versions of these disabilities for dramatic value.

There certainly is something to be said for making people understand that autism and AS are serious conditions with serious consequences. That's like focusing on cancer patients who needed amputations, chemotherapy and frequent radiation treatments, all of which have visible side effects. And people with the most severe forms of any condition need and deserve all the help they can get.

Many other people with cancer suffer quite a lot but it gets noticed - and accommodated - much less. For example, if a cancer patient works hard to make sure her pain does not distract others, she may successfully avoid upsetting others but she can still be in great pain and be unable to pursue many activities.

Even with agonizing and inoperable cancer, a determined enough person can do a wide variety of things. Including serving as a U.S. senator. (Happy Birthday!)

We Aspies and autists are trying to meet NTs at least halfway. We're compromising between our needs and the customs and expectations of a world we will never fully understand. For example, we have limited amounts of energy for socializing, but many of us can do it for clearly defined (non-marathon) intervals, with advance notice. It is not inconsistent on our part to attend, say, a pre-arranged dinner and then leave without going off with some other people elsewhere for dessert - especially if the dessert invitation was on the spur of the moment. Or to attend one party and not another on the same holiday.

Nor is it inconsistent for us to be much better able to hold a conversation one-to-one than in a small group. Or to be much easier to get along with when we're fully rested than if, for whatever reason, we've been running on insufficient sleep. (It is our responsibility to get enough sleep whenever possible in that case, though.)

Or to be a Nobel Prize-winning economist and still behave differently from others and sometimes find accommodations helpful.

And it's more than time for us to put aside the garbage about "Why can't you do A as well as everyone else...you're so smart with X, Y and Z!" For example, we all know that one can fail one's college entrance exams as a whole even while getting high marks in Math and Physics...and still be no dummy. Aspies often have special talents, such as a keen eye for detail, the ability to focus and even sometimes good verbal skills. That doesn't mean we don't need help in other areas.

If we face an "all or nothing" choice, if our meeting NTs halfway means they think we can go the rest of the way just fine, if our reward for busting our butts and pushing back the frontiers of our comfort zones is disregard for the issues that remain, if our hard work to conform whenever we can means we get blamed and punished whenever we can't, with our good behavior all those other times being Exhibits A-E against us - "Obviously, you do know better...." - well, how would you respond in our place?

What do you think?

PS: If any of Reese's school administrators happen to read this: You would be well advised to give her the help she needs. StatMom has triumphed over much more than problems at her children's schools, more than she's even discussed in her blog. She will hang anyone out to dry who puts her children in impossible situations.

2 comments:

StatMama said...

Well said, Jeff!

I love the name and idea behind your blog, because building common ground is what we should all strive for. Sadly in my situation, it seems some admins don't even want that.

Tanya @ Teenautism said...

Good points, Jeff. If these administrators notice how well a child is doing, they should realize that it's because of the accommodations. Without them in place, any child would not do as well. Of course Reese still needs and benefits from the accommodations! Seems like a no-brainer to me! How frustrating that the adminstrators don't realize that. My best wishes to StatMom.