Tuesday, October 6, 2009

Thoughts on "1 in 91"

Being TV-less and also newpaper-less, I have been in my own little world of late, so forgive me if this is old news. I have not had a whole lot of spare time, and what time I have is spent sitting in a classroom or cleaning the house, or scooping horse poop out of the pasture. Anyway, my mother in law mentioned the new stats a few days ago, and then I found a thread discussing it on one of the horse forums I frequent. While I remain ambivalent on the specific topic, other issues came up in the conversation on the forum thread.

"Sorry I just don't believe that many kids have "autism". I believe they put every eccentric kid on the "spectrum". Seriously the definition is so ridiculously broad. Half my family would be on the "spectrum". Why do we have to label everyone?"

Can't really argue, as far as the broadness of the spectrum is concerned. It is very broad, and it kind of has to be. Autism is a disorder that is different for every child- it's not a cookie cutter kid diagnosis. Every kid has their own symptoms, their own behaviors, their own quirks. Some kids are savants, some kids will never get out of diapers. Some kids love music, some love lights, some hate stimulation of any kind. Some feel pain, some don't. You have to have a broad spectrum to include all these kids, don't you? I don't believe that half of this woman's family would be on the spectrum, and if that were true, I would sincerely hope she had made some effort to get some evalutation and help if needed, for these family members.

"Well the issue now is they put kids who are a bit different on the "spectrum" now. So if your kid is prone to tantrums or hates loud noise. If he or she has "different" types of knowledge than the average, if they enjoy making lists or lining things up, they are on the spectrum.

I see a LOT of kids. When you see a truly autistic child... you know it. It's unmistakable. Some of the kids i see on the "spectrum" are really very normal kids with some odd behavior. You may have to handle them a little differently but I'm not convinced labeling them and treating them very differently is a great plan. No kidding I have family members who would be on the spectrum by the definitions I've read. They are perfectly "normal" adults who never had special treatment.

I'm a little put off by our desire as a nation to give every difference among people a name and a treatment plan."

Most of the time, Jaymes fits this stereotype. Most of the time. Sometimes when he's calm and happy, you really can't tell. I know quite a few kids with autism who are very severe, and sometimes you still can't tell. Now, if you hang around them long enough, it's becomes apparent, but you can't always detect autism at first glance. As far as "normal" kids being given an Aspergers diagnosis... I guess I just am on the fence. On one hand, I agree that some of the adults I have met who claim themselves to be Aspergers seem just fine, and it irks me when they use it as an excuse to be bitchy. However, in Aspergers kids... I trust parents. If the parent thinks something isn't right, it probably is not. That's just the truth. Parents know their children, and I don't think any of us are likely to go to the effort of getting a diagnosis as final as autism or aspergers if it isn't true.

"And you would be surprised how many parents WANT their kids to be special needs. It gives them excuse to be bad parents. "There was nothing we could do. He was born with Austismdisorderwecantpronounce so there was no stopping him from setting those fires and stealing those prescription drugs."

Yes, it's SO much fun to be the parent of a special needs kid that parents everywhere are clamoring for a diagnosis. Whoo! the excitement of constant doctor and therapist appointments, the diapers on kids way past diaper age, the meltdowns in public. What a blast. People who make comments like this have no clue. Most of the autism parents I know do not medicate, nor do they make excuses for their kids behavior. My kid has autism, it gives me an excuse to be a BETTER parent, not a neglectful one. An autism diagnosis signals the start of yearsof hard work and struggle- hardly an excuse to be a lazy parent.

"Just to be clear I totally get that there are kids with this issue. I even get that there are varying degrees of autism. However... I see kids labeled on the "spectrum" that really are totally normal in their eccentricity. Sure not like all the other kids. Maybe a bit ummm odd. But normal enough for sure. Easily normal enough not to be labeled.

The grandson of one of my dear friends was labeled on the autistic spectrum because he had a fit over shirt labels. He would freak over it. He had other little tactile preferences that would cause him to tantrum but honestly he operated totally normally in every other way. I said at the time "so take the damned labels off his shirts and be done with it". I couldn't see why anyone would want to give a kid a label over what amounted to a bit of a obsessive preference."

A label is like a Disney Fastpass. A label gets you on that ride faster than you'd get on without it. With autism, early intervention is key. The label is necessary sometimes.

And then the comments go into people posting the "signs of autism" list and picking one or two traits off of it that resemble their own quirks, then saying "Oh well I must be autistic too." This is ridiculous. Kids are not diagnosed by having one quirk. A kid who spins in circles does not necessarily have autism- he might just like spinning in circles. A kid who can't sit still could have any number of issues, beginning with being a typical 3 year old. It's when a child resembles EVERY sign on that list, that you get a true diagnosis. So no, just because some 19 year old on the internet doesn't like loud noises, doesn't mean she's autistic.

"Cripes.... Reading some of the "defining characteristics" of autism.... I guess I'm autistic.

So are they actually trying to stick children who will only wear one shirt or one hat etc into that label? I know very few children who didn't go through some sort of stage like this. My brother had the "jungle shirt" phase, the "cowboys hat" phase and the "actual cowboy hat" phase. He refused to take any of these articles of clothing off or wear anything else without having an absolute meltdown. He grew out of it after a month or so for each episode.

I like/liked lists, categorizing things etc. I have a lot of fun playing games that involve these cocepts (bejeweled, noah's ark etc) If a lot of people didn't like doing these things, those games wouldn't be there for us.

I dunno, I think it's oversimplification. It makes it harder for those of us with REAL issues to get the help we need and be taken seriously. I get looked at funny and criticized when somebody knows I have ADD or am Bipolar(II). It's frustrating, my mom and teachers never wanted to put me through testing because they didn't want me falsely being categorized, and I had to do it on my own. Now I'm so much happier for the help I've gotten, I just wished it had been sooner."

Apparently autism isn't a REAL issue. Someone should tell our kids this, eh?

"when you look at the lists of clinical symptoms for a condition, some of them are vague, and yes, it can be hard to differentiate them from "normal but atypical" behaviors. Part of that is because we diagnose based on categories, but real life isn't categorical - it's a continuum. Also, a "clinical" diagnosis (one based on signs and symptoms and evaluated by a physician, not on a laboratory test) usually requires meeting a set number of those symptoms, in recognizable patterns, not just one or two.

For example, I have several recognizable symptoms of a genetic condition called Ehlers-Danlos Syndrome, which is a collagen defect - but I don't "have" EDS because I don't have enough of the symptoms to make a clinical diagnosis (yes, this is what we do in the office for fun... diagnose BXM with genetic conditions ). However, if the diagnostic criteria were to change to include other symptoms or patterns, I may indeed "have" EDS. There is a laboratory test for EDS, but it's confirmatory, not diagnostic - were I to fail the lab test, I could still "have" EDS based on the clinical diagnosis.

It's also remarkable what a good doctor can see - my boss immediately recognizes amazingly subtle assymetries in facial features, for example, that are meaningful but not necessarily that "different" from "normal." His diagnoses are based not just on the clinical symptoms but on the entire gestalt of the individual patient presented to him. A good physician will not diagnose autism or ASD based just on a list in the DSM-IV - otherwise computers could be doctors. "

Running out of time, jaymes is almost done in PT and will be out here in the waiting room- so I'll end with that good post above!


Anonymous said...

Can't say I disagree with anything you wrote (not the inserts from others).

Very thorough - so nothing to add.

EDS, eh?

My first visit here, via the BlogHerAd. Will be back.

laura said...

i know this is a little late, but i am 17 and diagnosed myself with asperger's. i rock, i stim, i perseverate, i have meltdowns, i am sensitive to a lot of clothing and most high-pitched sounds, i don't like to look people in the eye, i am afraid to talk to people a lot of the time because i always manage to disobey some unwritten social rule that no one bothers to tell me about. but i don't have an "official" diagnosis because until recently, i've been able to hide it. when i stim around other people, i can confine it to twitching my fingers in an almost normal fashion. i didn't start having meltdowns until just recently. even so, in public i "look" normal. should i be classified as "not autistic" because i am milder than your son?