Is Autism the 'Default'?

Over the past few months, I have been ruminating over whether the changes in the DSM V criterea for autism will be beneficial to those in the confines of the spectrum. Most 'in the know' understand at least what the DSM criteria is; I don't think anybody knows what the impact of the changes to it will be. The short explanation of the changes in the DSM V is that they will be rolling most all of the various classifications of autism spectrum (autism, CDD, PDD/NOS, Asperger's) into one broad category-autism spectrum disorders.

Somewhat unrelated, mi 'amiga' en Argentina, Maria, recently put up a link to a new study on co morbid psychiatric conditions in Asperger's. Not that is presented anything earth-shattering, but it was thought provoking. It stated that upwards of 74% of Asperger's and high functioning autistic (whatever that means) kids between 9-16 had other psychiatric conditions, like behavioral disorders, anxiety disorders etc. The numbers seem shocking to the naked eye; but those of us wearing those rainbow-colored-spectrum glasses, it's somewhat of a confirmation of what we already know. So many of these conditions exist in all areas of the spectrum, that they are almost considered part of the spectrum.

Let me edit that last statement to say that very often, these co morbid conditions are treated and diagnosed as part of the autism spectrum. If anxiety over an uncomfortable situation or an out of place object causes someone to stim and cower in a corner, well that's 'just the autism'. If a child has a tantrum because they did not get what they wanted the way they wanted, just 'part of the autism'. I can't necessarily blame educators, doctors or even parents for taking that default view, but it does have the potential for causing problems.

We will often, out of ignorance, take this 'default' view; that our child is just like other autistic children. Of course that's true; there are common issues for all our kids, and we can gain better understanding by looking at them with the commonalities included. The problem lies in the fact that, while we think of our world as so vast, autism still only represents, at most, 1% of the population. Even though we see wide variety in the spectrum, others outside of it are not as in tuned as we might be.

Think of it this way: we are Volvo. Volvo represents about 7 out 1000 cars sold in 2009. I know, a little light, Buicks would have been better, but I have to be global and I didn't want anyone drawing GM analogies on me. Regardless, those Volvo drivers see a whole host of different models, engine types, body types-- but to a general mechanic, it's just a Volvo. He may have worked on a Turbo Diesel a few months ago, but hey, YOURS is a gas engine and it's a newer model; the one he worked on before is COMPLETELY different than yours. It's a pretty good analogy, aside from the fact that I wish I had a manual for all my 'cars': autistic and NT alike, and a dealership that specialized in my Volvos in particular. Back to these autism 'mechanics', they have no manuals no real specialized training, so when they get our Volvos in their shops, they basically look up what most Volvos usually need repaired and, unless they're that solid gold mechanic, fix that type of issue...whether broken or not.

It sounds a bit far-fetched but that's what frequently happens with doctors and school systems. Our first pediatric neurologist saw Livie for all of 15 minutes when she was three, blanketly stated "Give her as much discreet trial ABA as she can take", and bid us good day. School systems will often set up one particular method of autism therapy and, whether your child is non verbal with oral apraxia or PDD with OCD issues, the treatment is generic: put them in the 'autistic' (or worse special needs) classroom. My oft repeated story of a pediatric gastroenterologist who did not want to entertain the idea of us doing a gluten/casein free diet, but was willing to attribute my daughter's reflux and vomiting to "probably a stim". That last one is particularly disturbing because the doctor literally dismissed my daughter's physical and medical symptoms and 'diagnosed' them outside of her area of expertise as just part of the autism.

This drags us back to the dual point of my post. The first is that all too often, much of what our autistic kids do is just sub categorized under the umbrella of autism. It seems to be the alpha and omega when it comes to neurological, behavioral/educational and even sometimes medical diagnosis and treatment. So much can and does get lost because of this type of laziness. The second point is that the DSM V is going to consolidate autism into one generic diagnostic code. The good news is that it will be much easier for doctors to feel comfortable assigning an autism spectrum disorder diagnosis without worrying about which group they need to be classified in. The bad news is that we will still have to be able to tease out the individual issues within the spectrum for our kids to get the proper therapeutic, educational and medical treatment.

Given all the progress we have made in the past 8-16 years with autism diagnosis, treatment and education (both because of and despite of the DSM IV), I doubt we are headed backward in the care and treatment of autism. But nagging in the back of my mind are those mechanics. I worry about those new parents in their newly diagnosed Volvos. Undoubtedly their will still be doctors, districts and developmental therapists with a basic idea of care and maintenance, but absolutely no idea of the difference between a 24o DL, a PV544 or an S80. It's going to be up to the parents to push the differences hard in 2013 when the new criteria comes out. We need to make it clear that while these children and adults may 'autism spectrum disorder', the conversations need to start and not end at that point.