I think this is the problem of inartful communication rather than “splittling versus clumping”. For instance, “mentally retarded” conjures up a certain image in most people’s brains. But there are mentally retarded people who are institutionalized and wearing diapers into adulthood and there are mentally retarded people driving cars and getting married. People generally use “profoundly”, “severely”, and “mildly” when communicating to others about someone’s disability. The same convention should be applied to autism.
“Asperger’s” doesn’t make sense to me and probably never will. The only difference between Asperger’s and autism (high-functioning) is the lack of language delay. But language is an issue with both. There are plenty of people diagnosed with Asperger’s who have problems with language (unusual prosody, speech impediments, perservative/repetitive/idiosyncratic use of language,etc.) It doesn’t make sense to me to give so much importance to when a child started speaking when content and form of speech are just as if not more critical.
There are people with Asperger’s who have motor issues. Others who do not. There are people with classical autism who have motor issues. While others do not. Yet the experts insist that people Asperger’s are distinguishable from the autistic in that the former is much clumsier than the latter. There seem to be so many exceptions that this is a meaningless “rule” to me.
It makes more sense to put everything on a single spectrum and just check off those symptoms a kid exhibits–with some mandatory “cardinal” ones just to be safe. I understand how splitting may make communication easier. But for people who need help and don’t have time or money to go to a gazillion different specialists, the less diagnostic hurdles they have to leap over, the better.
My son just turned 2 and is on the spectrum. He was in early intervention shortly after he hit 21 months and is making progress. My son shares in some of these behaviors, but his case on its face sounds far less severe. He may turn out to be high functioning yet.
Some make the argument that parents are somehow driving the increase in diagnosis because they want their special snowflakes to receive some sort of label. But the reverse seems to be the case as well. People resist the very possibility that their children are on the spectrum for the flimsiest of reasons. Sometimes they are in denial, sometimes their children don’t present symptoms in a way a non-professional would recognize, and others chase non-autism labels. It’s not obvious whether there are more autism-pushing or autism-denying parents out there.
We knew our son had problems, but it was by no means obvious to us that he was on the spectrum. After all, he is a jolly, engaging kid who has no problem wandering up to strangers, giving his toys to other children, and he is very physically adept. But as it turns out, he has no fear, no sense of boundaries, and just about no sense of ownership. If you turn your back on him, he might walk off with a stranger, run into traffic, or try to leap from any height. The difference between his behavior and that of neurotypical 2-year olds is subtle yet profound. We had him evaluated for speech and receptive language delays, but in the course of half a dozen evaluations saw behavioral patterns emerge that we never would have noticed. Any one or two of them are normal weird kid things. But when your kid does all of them and doesn’t know his own name when he is 2, there is reason to believe that there is a more serious problem.
Couldn’t have said it better myself!!! I really do think that Asperger’s and PDD-NOS need to be dx of their own. It’s like the way severe learning disabilty/signiient nerological impairment is distinct from mental disabilty.
It shows that the labels are inadequate and shouldn’t be relied upon too much to describe individuals.
Which is basically how they do it in the real world, for autism or any other condition. For instance, an IEP is not going to simply say “autism,” or “Down syndrome,” it will describe very specifically the needs of the child and work from there. The label or diagnosis is barely mentioned.
I think they group them because they have alot in common, and may have a common cause. A diagnosis is a medical or psychological tool, not one for use in education or community supports. Lots of conditions have an overall label with subtypes or degrees that refine them. Educators, therapists, support staff etc. don’t care as much about the labels, but the individual’s needs, since they vary widely. They will do a detailed analysis of each persons abilities and needs before figuring out what they need.
The labels are important insofar as they determine eligibility for services. I am personally uninterested in whether my son has autism, shmautism, or something else entirely provided that he receives the therapy he needs. When the political process that determines state health & education budgets magically accepts greater diagnostic nuance, then perhaps we can change the label. But in the meantime, autism inflation is no different than grade inflation. We all agree it’s bad, we’d all be better off if there weren’t any, but no one can fix it unilaterally without hurting undeserving people.
But not as much as some people seem to think, such as those who claim that the labels are for “snowflakes” or marginal students to get services. Someone who has mild autism isn’t going to get the same level of services as someone who has severe autism.
Labels have a huge and direct impact on services. When autism is caught very early, diagnosticians often do not even take a position on severity. The consequence of diagnosis is whether the child receives services at all. As is often the case, no label means limited or no services. Just look at the difference in APA therapeutic guidelines for autism/PDD or, say, unspecified childhood emotional disturbance, a new favorite residual category for professionals trying to push back on autism diagnoses. The difference is enormous.
Thats not entirely accurate. The label itself, ASD, Other Health Impairment, cognitive impairment, etc.. will impacts what service, to what extent, and how long long the child will receive it. (before re-evaluation) You can argue for anything in the IEP meeting, but the school district will want to use a template based on the label. This probably depends a lot on your state and/or school district, I’m only speaking for my own experience.
It impacts what services he might be eligible for. But he won’t get them if he doesn’t need them. There’s lots of variation within a given template.
I’m just saying the idea that special ed is this magical way of getting all kinds of goodies from the school, and therefore people are pushing to get labels, is inaccurate.
You’re just characterizing it really perversely. The services you get aren’t magical goodies. They are a gigantic pain in the ass and are of no value to neurotypical kids. We have people in our home 20 hours per week at the moment. My wife’s schedule is ruled by the availability of my son’s therapists. No one in their right mind would want this, especially since these therapies would do nothing if my kid didn’t have problems. People don’t push the label because they want magical goodies, but because their kids have problems that they want treated.
+1 +1 + 1 + 1 +1 +1 + 1 + 1 +1 +1 + 1 + 1 ( when he gets in a groove he can go on for a while)
Maeglin has it nailed there, and that is also our experience. My wife spends an inordinate ammount of time in discussions with the school team, working with either provided , or paid for out of pocket assistance , refining the AOP with the school and it just goes on.
Yes parents “fight” for what they can out of the systems, Why wouldn’t they? Do parents sue to get more services? Not sure about that, my wife chased down two stories in our area where the line was the parents sued to get full day kindergarten , both turned out to be BS / word of mouth distortion.
I cant imagine anyone wants the diagnosis, but refining the diagnosis is a good thing, it helps get the right amount of support and the right type of support. The school districts have budgets that they have to manage, we have to push for what we can get in that constrained budget. Are there unreasonable parents, no doubt, but mostly the effort that needs to be expended to get additional services vastly exceeds the benefit if your kid didn’t really need it .
PCM
I’ve found a couple of cited cases that cite other cases involving parents of special-needs kids who tried to force their school districts to pay for what they wanted for their kids, which are not necessarily the services that the district is required to pay for. So it does happen. (I’ve only linked to the one case because there are a number of related cases cited therein, and I didn’t want to throw a bunch of links at you. I believe in quality over quantity.)
The current law states that districts are only required to pay for services that are necessary for the child’s academic progress. They are not responsible for providing all services so the child can achieve his maximum potential, and that’s part of the issue. Parents may want the district to cover all manner of therapies and interventions, but the district can only afford so much, and isn’t required to pay for all of that in any event.
First of all, I have to say that I have a lot of respect for the parents of kids with special needs.
Second, my classmates’ war stories tell of parents who will fight like hell to get their kids an Asperger’s diagnosis (or something similar), not so they can get therapy and other such services, but so their kids can be able to take their exams in a quiet room, get more time to take their exams, and to get relaxed deadlines so they can turn in better work without being penalized for turning it in late. Furthermore, this does not hurt the child’s chances for advanced classes. So the perceived benefit is that the child gets a leg up on college. I don’t know how often it works, though. (Blair Hornstine, who was savaged here some years back, was accused of using a mystery physical illness to accomplish the same thing; she sued to gain standing as the sole valedictorian in her high school class which created some hard feelings.)
Don’t know about parents. But there are plenty of adults looking to get diagnosed. For any number of reasons. Some of them no doubt dubious. But probably not most.
I do wonder if these “adulthood” diagnoses are folded into the stats. Or how many adults become qualified for services once they get diagnosed but otherwise would be SOL.