Asperger's Syndrome to be dropped as a diagnosis in DSM-5

[SheilaT]

11. The spectrum thing is crucial.

Many years ago, sometime in the early 1990's, Time magazine did an article on autism. There was a sentence in it that just leaped out at my husband and me. This is a bit of a paraphrase, but it captures the sentiment: To autistic children other people are simply blobs of protoplasm that come and go without rhyme or reason.

We looked at each other in astonishment. That captured our son almost perfectly. It's important to know that he functioned reasonably well, that he navigated the school system okay. We knew he was smart. We also knew he was different. This article gave us a sense of what he actually was.

When it was clear that staying in our (very good) public school system was not a good idea -- long story short he was being bullied in elementary school, I was given a heads-up from another mom that it would be many magnitudes worse in the 7-8 middle school (and you may not want to hear why I think that sort of separation is as bad as it can possibly be) we decided it was time to move our son to a private school. Fortunately, we had the financial resources thanks to very generous grandparents. Afterwards I said more than once that I would have gladly cleaned houses to afford the private school.

Here's what happened: My son was very smart. In the public school athletic performance was all, and his academic credentials hardly mattered. In the private school his smarts were admired and rewarded. Athletics had their place, but they were held in control, as only a part of everything, not the number one and sometimes only performance that mattered. Here's a brag: He went to National Science Bowl in both his junior and senior years, and it was quite obvious that his performance at the local competition (by far the largest in the country, I might add) almost single-handedly took his team to Nationals.

Here's another thing: This son had lost all of his hair to alopecia areata, an auto immune disorder, when he was four years old. As a consequence, for many years, we honestly thought that many of his social problem stemmed from his different appearance, not his actual behavioral and psychological differences.

So he went through school, looking and behaving very differently from his peers. In the public school he was shunned and friendless. In the private school, because academics were valued, he had friends, even though he was still a bit different.

I want to get back to the spectrum, the fact that there is a very long line, and anyone on the autistic spectrum fits somewhere on that line. It's not an either/or. One thing that was very interesting was that after I figured out my son was autistic, had Asperger's, and I'd describe it to people, I'd often get a response along the lines of, "Oh, that's just like my Uncle Jethro [I'm making up the name here]. He was always different." And then they'd go on and tell me more about Uncle Jethro and it was clear he was somewhere on the autism spectrum.

Another thing. I personally am glad my son was not diagnosed until he was 18 years old and half way through his senior year of high school. It helped keeping him from being his diagnosis, his disease. Those whose children were diagnosed much earlier may well disagree, and I'm not about to say they are wrong.