In their infinite wisdom, the American Psychiatric Association is, after almost two decades, updating the medical definition of autism and by “updating” I mean “narrowing.” It almost appears that, in a misguided attempt to deal with the increasing rate at which autism is being diagnosised, they have decided to exclude a great deal of the less extreme cases of autism by simply claiming they do not actually have autism.
Autism. The word summons up images of Dustin Hoffman in Rain Man and of children that appear almost catatonic. The public’s understanding of autism has not progressed much since then and that’s not necessarily the public’s fault. The causes of autism are still mostly unknown. Its effect on children (and the adults they become) varies wildly from case to case and there’s no single “treatment.” If the people that have been studying it for decades don’t fully understand such basic information themselves, can we really expect the general public to understand it? Probably not.
However, there’s nothing stopping the public from being better educated about the difficulties and challenges involved with being a parent raising autistic children. The media has reported that autism is “spreading” as if it were a communicable disease but the reality is more that, as our grasp of what autism entails grows, we are finding that there are more children that fall into that category. For this reason the term “autism spectrum disorder” was created to encompass all of the various facets. An imperfect analogy would be that of several people missing various limbs. One is missing a foot, another a leg, a third, both arms. All have considerably different levels of difficulties to deal with, yet all are still amputees.
But, if the new definitions are adopted, the guy missing a foot won’t be an amputee anymore.
Bullshit. From the NYTimes:
The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”
How is redefining a problem so it’s no longer “officially” a problem actually helping anyone?
If you’ve followed me for a while you’ll know that i have an autistic son, Jordan. Sweetest child ever. Not a mean bone in his body. But at just shy of his fourth birthday, Jordan cannot speak. He does not play with other children or make regular eye contact. His physical development is delayed; he still has difficulty walking down stairs or climbing a ladder at the playground. He can understand what is being said to him but is almost completely unable to communicate with others. All classic symptoms of autism.
However, Jordan does not display several other classic symptoms such as repetitive behaviors like rocking back and forth or flapping his hands. He is not obsessed with spinning wheels or lining objects up over and over. For this reason, the new definitions would exclude Jordan from a diagnosis of autism and possibly cutting him off from vital services.
There’s a reason it’s called “autism SPECTRUM disorder.” Some people are severe cases while others are not as impaired. This does not mean those on the lower end don’t need help. I’m a fairly bright person and so is my wife. Yet neither of us is under the illusion that we can pick up a few books and tackle this ourselves. Jordan’s therapists are trained professionals and we need them to help our son. I’ve discussed this before in a slightly different context but the point is the same: your average parent cannot possibly afford to pay for private therapists and simply do not have the skill set required to do it themselves.
So what happens when the official guidelines exclude my son? Do I just throw up my hands and say “Oh well! I guess he’s a perfectly normal kid because someone who has never met him says so?” Ridiculous.
The good news, according to the Irish Wench (mother of three kids on the spectrum and newly minted American citizen and my go to source for all things autism related) is the Diagnostic and Statistical Manual of Mental Disorders (fifth edition) is only a guideline and is not binding on city or state municipalities. If Jordan is determined (by people who will actually sit and interact with him) to still require services, he will continue to get them.
The bad news is that if the city pressures the schools to cut services, they’ll go after the least afflicted first. Mind you, these are the same people that suggested we cut speech therapy completely. We only had it reinstated after explaining, loudly, that Jordan did not speak. At all. Not a single word or intelligible sound. THIS is what parents with autistic children have to deal with. And now it’s going to get so much worse.
Read more about it here.