Friday, February 11, 2011

Neuro-atypical?

As I mentioned briefly in a previous post, we are going to have the Pillowfight Fairy evaluated to see if she may have Asperger Syndrome. The more we read about it, the more it sounds like our daughter. My mother-in-law loaned us a book titled "The OASIS Guide to Asperger Syndrome." I would highly recommend it for anyone wanting to understand this fairly common disorder.

In leading up to our daughter's evaluation, I got to go to a parent-only screening class. This involved letting one psychologist go over all of the basic information once with a group of parents instead of having every psychologist say the same thing over and over to every parent they see. Then I got to talk to a psychologist about our particular concerns one-on-one. The gist of the conversation resulted in the psychologist agreeing that we may have an Asperger's kid, so an evaluation would be appropriate. We have an appointment scheduled for next month.

Between reading the above-mentioned book and listening to the two psychologists at the clinic, I have had several ideas floating through my mind that I thought might be worth sharing.

  1. The book keeps using the term "neurotypical" in place of the term "normal" to refer to the majority of the population. I love that term. I have had a love-hate relationship with the word "normal." That is probably because I have never quite felt "normal" as it was always depicted to me. But I can understand something being typical without putting a value judgment on it. In reading the book, it helped me see some of the areas where I may not be typical myself. As it describes Asperger's as opposed to typical thought and behavior, I kept seeing how I don't always have typical thought or behavior myself (though not along the Asperger's direction). It makes me wonder how much of what is considered a "disorder" is simply natural variation among people. It also makes me wonder how our society does not adjust well to having people who are different among them, despite all the pride in tolerance.
  2. While the introduction was being given by one psychologist, she spent time explaining what kinds of psychological help is given at their clinic and what stresses kids deal with. She also described how their schedule of appointments flows with the school year. What she did not mention directly was that school is a major stress point in kids lives. She did mention that the appointments drop off when school is not in session. I take that as either the schools or parents are not feeling the need for psychological assistance when school is out.
  3. One thing that I thought was helpful to me is that just because something is normal or typical, doesn't make it good. Her example was that typical behavior for 2 and 3-year-olds is to have tantrums. That behavior is typical, but it is not OK and the child needs help to change that behavior to something better. This resonated with me after reading the above-mentioned book, since some examples of Asperger kids having trouble with others involve things like socially accepted white lies. These would be things like one person asking another if they liked their new hair color (which looked bad) and the friend, lying to reassure her, tells her that she looks great. The person asking the question neither wants nor expects the truth and the person responding understands this and provides the desired lie. In the case of Asperger kids they are trained to recognize such things and respond in a more socially acceptable way than the tactless truth. Personally, I find this sad. I consider the normal behavior depicted here as undesirable mind games that encourage an acceptance of deception both against others and toward one's self. However, to function in our society, we train those who have a natural disinclination for such behavior to imitate it to blend in. Yeah, I have a lot of gripes against the normal or typical way of doing things.
  4. One thing mentioned that I found quite disturbing was that among the stresses that are currently typical for your average 4 and 5 year olds, besides the fact that they are starting school, is that they are frequently going through a divorce in their family. I have my own opinions about how we put kids through school in our society, but this statement about the commonplace situation of kids enduring the divorce of their parents as they start kindergarten just wrenched my gut.
  5. When I was speaking one-on-one to another psychologist, he mentioned that we may have to change our decision about homeschooling or at least accept services through the public school district if that is deemed necessary for our daughter. He stated "that's how we do it (at that clinic) because it's free". Now, I agree that one should always be open to making adjustments as needed to meet the circumstances in which one finds oneself. However, I have found homeschooling to be so beneficial to our kids and to our family that it would take a lot to just switch to public school without weighing other options first. It could be that the services could be provided without full enrollment. It could be that there are other options that would suit our family better. I'd like to find out the full range of options before making a decision about that. Besides, we haven't even had the evaluation yet. Isn't that jumping the gun a bit? Maybe I've read about too many conflicts between public schools and homeschoolers or maybe it's my individualist streak coming out, but the saying that keeps popping up in my mind is "there's no such thing as a free lunch." Too often things that are labeled free have strings attached, hoops to jump through, or a hidden cost.
So, after the evaluation, we will have a better idea of what is going on with our daughter and what kinds of help she might need to get along with people better. In the meantime, I've been enjoying her company and being reminded how much she is like a normal kid too. We have told her a little bit of what this is about. She is looking forward to the evaluation. I think she likes the idea of having a new person to talk to.

4 comments:

silvermine said...

We recently left the silicon valley area, but there I'd say people tended to homeschool *because* of aspergers. Half the kids at our favorite park day were aspergers, if not more. Their parents were always there to help sort out any problems, and I think they were more likely to be understood, find peers, and learn how to cope with it. Much more so than at school! Heck, I miss those kids. :)

Anonymous said...

You do not actually have to be enrolled in the school district to make use of some of the special services. When I taught fourth grade in the public schools we had a student from the local Catholic school who came over at lunch for her speech therapy. It can be done.
Grannie J.

Nancy said...

How great that you found a book to be so helpful for your situation - and then you posted about it to help others! Your child is a person and you sound like a wonderful, caring mother. It really sounds like how you live is the best possible environment for your precious child.

Ring true,
Nancy

Gary B said...

Tonya - I think you're really on-target with the way you are looking at this. I really question whether it is appropriate to call AS a "disorder." It is a different world view - it has some challenges, but also some advantages.

I read Create Your Own Economy, by Tyler Cowen, last year. I expected it to be about entrepreneurship, but it turned out to be about structuring your life to match your own value system. He drew heavily, probably half the book, on the experiences of adult Aspies and high-functioning autistics, pointing out many peculiar advantages they have over neurotypicals because of the way technology has changed our lives.

Anyway, I thought I'd recommend the book if you want to do more reading from the differently-ordered perspective (as opposed to viewing it as a disorder.) The public library system has it in both book and CD format.