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.

Sunday, February 14, 2010

Septuple Jeopardy

It is a rare occurrence that you get the whole fam damily out the house all at once for any reason. Since there was going to be a family gathering of a complete nature, well, of a NJ complete nature anyway, since is just about 1/2 of my immediate family is in TX. So we commit to getting emptied on inhabitants before noon on a Sunday. OK, fine! For all those with logistical military training, that's not that big of a deal; but for the rest of us, this ranks just below family pictures in rank of difficulty. 7 humanoids bathed and reasonably dressed...check. 7 hours worth of supplies of the keep-the-girls-from-reducing-brother's-house-to-smoldering-mess caliper....check. 7 people, 7 backs, 7 nerves left packed into a mini-van...check.

Sidebar: Minivans ARE aptly named. I remember my dad's 1969 Townsman; nine passengers MEANT 9 passengers. 3 on the front bench seat; 3 in the middle; 3 in the trunk seat facing the guy behind you (free to be as vulgar to them as long as dad didn't catch it in the rearview). Yea, having the youngest in the middle seat of the front was an inconvenience. But no 'child safety seats' and this thing was as wide as a Mini Cooper is long. In fact, if you hit a mini in this thing, you'd curse the road crews for not fixing that pot hole. The 'mini' van, however claims 7 passengers; yea 7 passengers that make Paris Hilton look like Oprah Winfrey 6 months after pissing off her dietitian. 2 seats in the front; 2 in the middle and room for 3 (MMHMM) in the back.

Sorry, I digressed. We were due out of the house for a flawless execution at 11:45. Unless the house was riding on it, that's not going to happen. I'm shooting for more like 12:30...12:50...OK, I settle for before 1PM. The argument for the middle seat is settled (one boy gets the pain on the way there, one on the way back); the seatbelts have been properly stationed (I missed Liv's booster seat, more on that later); we're off an running for or 75 minute tightrope walk. I things go badly of course I WILL TURN THIS CAR AROUND.

The route to my brothers house has two distinct and equal paths; the turning point marked by a divided highway on Route 287; I choose the '78' route. 50/50 shot...better than's a Sunday for ------'s sake. I bet wrong, there was a 'jaws-of-life' serious accident on the side I chose. tack another 15 minutes onto the journey. We're almost 1/2 hour late. Fortunately the fam has been very understanding on this whole venture and has not had anything planned around all arriving within a 90 minute timeframe, so we are welcomed with open arms.

The day goes off without a hitch; no major appliances destroyed; no holes in the walls; no bathroom accidents anywhere but the bathroom. It's a challenge keeping up with the girls, and there's not a lot of time for schmoozing; but everyone appeared to have a wonderful time outside of the normal life. But the journey home still looms.

It's a lot easier getting everyone back in the car; just don't forget anything (Jason went back in to the house to get his DS and Gracie's 'pink game' was missing for a stressful 2 minutes). Jason was NOT happy that he now had the middle seat; and Linda discovered that the booster seat was in the trunk. I got out, opened the trunk, and got Livie scrunged into it...everyone had to give up that extra 6 inches in the back seat, so SUCK IT IN. Jason's mood went from sour to downright toxic and as a result hee was losing things left and right. "DAAaaAD, I lost something under the seat. Out of the driver's seat, over to the sliding door, on my knees..."What'dya lose?" "My Bakugon ball!" (5 seconds later) "We'll find it when we get home (slam)". I'm getting on the road before the tires go missing. 2 blocks later "DAAaaaAAD! I lost my drink!" 1/2 block later, I realize that it's either get the danged drink or spend a couple of hundred dollars to get a detailer to get the blood off the seats, so i slam on the brakes and dig to get the little 8 oz water that slid under his feet.

At last, peace and quiet for on a treacherous 45 mph winding Jersey road with the potential of black much more relaxing; the guy tailgating me the whole way, but a minor bit of sand in my shoe in comparison. Nice and quiet...better yet, no child falling asleep in the car an hour early. We're back in our home, back in our element.