Sunday, February 28, 2010

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.


ebohlman said...

The attitude you're dealing with is really a combination of outgroup homogeneity bias and group attribution error, or what Gordon Allport called "labels of primary potency." It's a form of what some people would call "essentialism" in the sense that there's some sort of Platonic ideal of, in this case, an autistic person.

Suppose I were to suddenly develop suicidal thoughts, a sense of despair, sleep disturbances, difficulty motivating myself to do anything, loss of enjoyment of things I used to enjoy, etc. Today "major depression" would be at the top of the differential. But 40 years ago, there would have been no differential, only a diagnosis of "homosexuality" and any therapy would have been aimed at trying to turn me straight.

Never mind that plenty of straight people would have displayed the exact same symptoms and Occam's Razor would suggest a common etiology. Never mind that these symptoms would have suddenly appeared when I was 50, yet I've been gay for longer than I can remember. The label would have completely hijacked the clinician's thought processes.

A mainstream pundit who tried to explain Obama's policies in terms of his being black would be regarded by many as telling "politically incorrect truths." A pundit who tried to explain Bush's policies in terms of his being white would be regarded by the same people (and nearly everyone else) as either an extremist radical or a crackpot.

Ever noticed how in all but the very best science fiction, every planet capable of supporting intelligent life is populated by a monoculture?

So the problem isn't autism-specific; it just tends to hit autistics particularly hard.


I almost used the ObamaVolvo as my post picture:
I just wonder if the 'gay' subtype pr the 'autism' subtype would be the 'default in your case, it just exeplifies how popular perceptions can shadow how we view the world. Autism seems to be the diagnosis du jour, will it be in 2013?

Clay said...

I liked the sexy-looking Volvo:

Yes, the mind mechanics will have to do a bit more work, to find out what issues are involved with each particular case. They should have been doing that anyway. Maybe we'll be able to learn more about it, such as the percentages who have OCD, anxiety, depression, intestinal problems, and do a better job of treating those symptoms.

Lisa Jo Rudy said...

Interestingly, NPR did a whole program (I think on This American Life) about the process by which the DSM first described homosexuality as a mental disorder (considered an advance - prior it it was a crime) and then finally removed it from the DSM.

I had never really reflected on (or even understood) to what degree some random bunch of psychiatrists literally define who is sane, what "normality" looks like, what it means to be an acceptable member of the human race.

Does anyone know to what degree the DSM is used abroad, or what other diagnostic criteria are used, say, in Europe or Asia?


Ali said...

Lisa, most of the world uses the ICD (currently ICD-10), which is sort of like the DSM in that it codes for various mental health and developmental disorders, but unlike it in that it also codes for nearly all human diseases and conditions. The pervasive developmental category is interesting and similar, but not the same as, the DSM. The PDDs are F84, and atypical autism is the essential equivalent to PDD-NOS. They've been saying AS isn't unique from autism for a while, too.

Anxiety and depression are both comorbid with my autism, and I'm not sure how to separate them out. I experience both to varying degrees, but it is because of how I experience the world that I do feel depression or anxiety. I think a lot of the time everything because "just the autism" because it can be difficult for everyone involved, including the autistic person, to separate the depression, anxiety, ocd, what have you from the descriptor of their thought processes.

(Specific diagnostic criteria for autism and Asperger's as in the ICD now: )

Lisa Jo Rudy said...

Thanks, Ali, this is very helpful info.

FYI, I did once interview Tony Attwood, and asked him whether depression/anxiety in a person with AS is the result of things being, in fact, depressing and anxiety provoking - or whether there was some form of comorbidity.

He seemed to think it was the latter... though I still wonder. I mean, if life is depressing and anxiety provoking, then isn't it reasonable to feel depressed and anxious??


ebohlman said...

In my case, the autism "potent label" wouldn't apply since I'm not on the spectrum. However, when I was younger the fact that I had ADHD without comorbid dyslexia caused some of the top child psychiatrists in the nation to engage in wild speculation (including a label of "paranoid schizophrenia" by a psychiatrist who had never met me); they just didn't have a mental pigeonhole for "hyper boy who reads well."

The "totalizing assumption" as I call it is currently causing lots of trouble for me and my father as we try to get my mother help for some (largely unresolved) neurological issues and some physical problems that are really mostly the consequences of prolonged bed rest. As soon as anybody hears that she had a stroke three years ago (most of her current problems did not appear until long afterwards, and the stroke was a mild one), they immediately attribute everything to it.

(Her PCP's current opinion is that her problems are due to polymyalgia rheumatica/temporal arteritis. PTs and OTs, however, immediately latch on to the CVA.)


Excuse the pun, but it just seems that, these so called mental health professionals are often engaged in a lot of 'mental masturbation' when it comes to diagnosing, classifying, and treating mental health issues? What is sound science in one generation becomes ludicrous in the next, becomes almost barbaric in subsequent generations.

I was trying to find whether there is anything concrete on the ICD-11 that is due out in 2015, you wonder how closely the will follow the DSM-V...