Increase In Autism.

[lance strongarm]

Originally Posted by Kimstu

We have? In what way? I'm not seeing anybody "blaming the parents" for autism.

In a roundabout way, as I said, to claim that parents are "pushing" for a diagnosis of autism is kind of like blaming them for it. Not directly, but you get the point.

[ticker]

I went to an interesting lecture on Autism yesterday by a Medical Historian (I did not previously know such a role even existed). Some of the more interesting points:

The definition of Autism was radically changed in 1994. Prior to that only the most severely affected, those with no language and virtually no empathy skills, would have been diagnosed as Autistic.

The 'Autistic Spectrum' is a spectrum of disorders, not a spectrum of severity within a single disorder. There are probably many Autistic disorders but currently it is not possible to separate them reliably.

Treatments/therapies appear to be effective in about 50% of cases. It is a crap-shoot whether any given child will respond.

In France Autism is considered a psychological condition caused by some mental trauma in first 18 months, to be treated by psychotherapy. Our views of Autism as a true mental disorder are dismissed as "The Anglo-Saxon interpretation".

There is some belief amongst the research community that an unusual number of US Senators probably have Autistic grandchildren. This is why Autism research was the only condition explicitly excluded from recent budget cuts.

[lance strongarm]

Look, let's not get bogged down in details.

It's legitimate to hypothesize that something is overdiagnosed. But it's not proven, and for some conditions, that's already been debunked.

And you don't need to belittle or insult people to state the hypothesis.

[lance strongarm]

Originally Posted by ticker

The definition of Autism was radically changed in 1994. Prior to that only the most severely affected, those with no language and virtually no empathy skills, would have been diagnosed as Autistic.

Looking at them, I'm not sure it was radically changed: http://unstrange.com/dsm1.html

Maybe 1994 is when the Autism spectrum was created? Does that account for the increase - the folding in of other conditions like Asperger's? I wonder.

In France Autism is considered a psychological condition caused by some mental trauma in first 18 months, to be treated by psychotherapy. Our views of Autism as a true mental disorder are dismissed as "The Anglo-Saxon interpretation".

Interesting. But that was pretty much our view too a few decades ago.

Thanks for the post - interesting and timely items.

[Marley23]

Originally Posted by lance strongarm

I disagree that I misinterpreted him. Only he can say.

You did, and I'm stepping in because it's becoming a distraction.

I was complaining that the argument insults all parents. You misinterpreted my post.

And I'm telling you that when you tell people "Enough," you sound like you are trying to boss them around. It's not a good way to communicate.

[Colophon]

Originally Posted by lance strongarm

I disagree that I misinterpreted him. Only he can say.

I seem to have stirred up a hornet's nest here. I apologise that I haven't been back to this thread before now.

Yes, you have misinterpreted me; whether that is my fault or yours I can't say. Almost certainly a bit of both.

I was not trying to belittle or deny the existence of autism. What I am saying is that a combination of factors is (IMHO) at play:

1) Cases that would previously have been classified differently now get labelled as autism. That's not to say they aren't autism; just that half a century or more ago they might have been called something different and, to modern ears, much less kind.

2) In my experience, some (I did say some!) parents will push for a diagnosis, if they suspect something is wrong. While this can be helpful in getting better support for the child, it can also be counterproductive because the child is labelled and no longer expected to be "normal" or improve, because they have a medical condition.

I was at school with a couple of kids that nowadays would almost certainly be called autistic. To the best of my knowledge that term simply wasn't used to anything like the same degree that it is now, except in extreme cases. People just thought those kids were a bit odd. I think knowledge and awareness of autism has increased vastly in recent years, in part thanks to the internet. Parents will demand to see specialists whereas before they might not have had the knowledge to do so.

[lance strongarm]

Originally Posted by Colophon

I seem to have stirred up a hornet's nest here. I apologise that I haven't been back to this thread before now.

Glad you're back!

1) Cases that would previously have been classified differently now get labelled as autism. That's not to say they aren't autism; just that half a century or more ago they might have been called something different and, to modern ears, much less kind.

That's fair.

2) In my experience, some (I did say some!) parents will push for a diagnosis, if they suspect something is wrong. While this can be helpful in getting better support for the child, it can also be counterproductive because the child is labelled and no longer expected to be "normal" or improve, because they have a medical condition.

That's also possible.

I reacted the way I did for two reasons: the resemblance of this argument to those who would take it further, and the unfortunate dismissive language you chose to use about "little snowflakes" etc. And also your choice to include allergies, etc.

The idea that there are parents out there with kids with real, difficult issues who you dismiss as nothing more than selfish or whatever isn't really appropriate. It's insulting to parents who are dealing with very real, serious, issues.

You sound very reasonable and polite now, so I won't continue to complain about that.

I was at school with a couple of kids that nowadays would almost certainly be called autistic. To the best of my knowledge that term simply wasn't used to anything like the same degree that it is now, except in extreme cases. People just thought those kids were a bit odd. I think knowledge and awareness of autism has increased vastly in recent years, in part thanks to the internet. Parents will demand to see specialists whereas before they might not have had the knowledge to do so.

But maybe they SHOULD have been labeled autistic all along.

There are many conditions that we used to not understand, and therefore not treat. We used to dismiss old people with memory problems as just "senile" and say it was normal. Now we call it Alzheimers, and identify it, and try to treat it. That's good. It doesn't indicate that everyone who has a "senior moment" is knocking down doctor's doors to get a diagnosis and drugs for Alzheimer's though.

[lance strongarm]

Originally Posted by Marley23

You did, and I'm stepping in because it's becoming a distraction.

Luckily, I can now discuss it with the commenter.

And I'm telling you that when you tell people "Enough," you sound like you are trying to boss them around. It's not a good way to communicate.

Okay. As long as you understand I wasn't trying to moderate or claim a violation of forum rules.

[Kimstu]

Originally Posted by lance strongarm

In a roundabout way, as I said, to claim that parents are "pushing" for a diagnosis of autism is kind of like blaming them for it. Not directly, but you get the point.

No, I don't. It seems to me that claiming that parental behavior is inadvertently the cause of a real and serious medical condition in children (as earlier autism researchers thought) is not at all like claiming that some parents think their children should be officially diagnosed with that condition.

"Blaming the parents" strikes me as an unfairly harsh and negative way to describe the perfectly reasonable observation that some parents, for various reasons, actively push for a diagnosis of some disorder rather than just waiting for a doctor to bestow it.

[Keweenaw]

Originally Posted by Colophon

I seem to have stirred up a hornet's nest here. I apologise that I haven't been back to this thread before now.

Yes, you have misinterpreted me; whether that is my fault or yours I can't say. Almost certainly a bit of both.

I was not trying to belittle or deny the existence of autism. What I am saying is that a combination of factors is (IMHO) at play:

1) Cases that would previously have been classified differently now get labelled as autism. That's not to say they aren't autism; just that half a century or more ago they might have been called something different and, to modern ears, much less kind.

2) In my experience, some (I did say some!) parents will push for a diagnosis, if they suspect something is wrong. While this can be helpful in getting better support for the child, it can also be counterproductive because the child is labelled and no longer expected to be "normal" or improve, because they have a medical condition.

I was at school with a couple of kids that nowadays would almost certainly be called autistic. To the best of my knowledge that term simply wasn't used to anything like the same degree that it is now, except in extreme cases. People just thought those kids were a bit odd. I think knowledge and awareness of autism has increased vastly in recent years, in part thanks to the internet. Parents will demand to see specialists whereas before they might not have had the knowledge to do so.

kudos for avoiding 'special snowflake' and 'imbecile' in this followup post.

[naita]

Originally Posted by lance strongarm

That's where I stop talking to you.

I deny that anyone has proven that the increase in allergies and developmental delays isn't real. Perhaps it's not, but you have'nt proven it. Internet boards and right-wing radio screamers are not evidence.

That wasn't my question. But to clear up your further misinterpretation and conjecture: I don't doubt there's an increase in allergies, and I haven't offered up internet boards and right-wing radio screamers as evidence that there isn't a huge increase in developmental delays.

Show me a study that proves it.

How about you back up your hypotheses with at least some statistical data to refute the analysis you've already accepted as possible:

Possibly.

Remember, some of the MR diagnoses may be going to other things too, such as learning disability.

Another possibility is increased testing and abortion when conditions causing MR are detected.

[lance strongarm]

Originally Posted by Kimstu

No, I don't. It seems to me that claiming that parental behavior is inadvertently the cause of a real and serious medical condition in children (as earlier autism researchers thought) is not at all like claiming that some parents think their children should be officially diagnosed with that condition.

Not literally.

My point is that we've gone back to saying "why is there a diagnosis of autism" and pointing at parents.

"Blaming the parents" strikes me as an unfairly harsh and negative way to describe the perfectly reasonable observation that some parents, for various reasons, actively push for a diagnosis of some disorder rather than just waiting for a doctor to bestow it.

But plenty of people come to doctors thinking they already know the diagnosis, and maybe even pushing for it. So what? That doesn't mean doctors just bow to their wishes. They HAVE to wait for a doctor to bestow a diagnosis - since only a doctor can officially diagnose.

[lance strongarm]

Originally Posted by naita

That wasn't my question. But to clear up your further misinterpretation and conjecture: I don't doubt there's an increase in allergies,

Yes, there is an increase in allergies.

http://today.msnbc.msn.com/id/431951...w-study-shows/

http://fooddrugallergy.ucla.edu/body.cfm?id=40

If you don't think so, post your own epidemiological data showing otherwise.

How about you back up your hypotheses with at least some statistical data to refute the analysis you've already accepted as possible:

I haven't offered a hypothesis.

I am merely pointing out that others who claim they know the cause need to back up theirs.

[lance strongarm]

A good resource, with actual science.

http://www.cdc.gov/features/autismprevalence/

[Colophon]

Originally Posted by lance strongarm

But maybe they SHOULD have been labeled autistic all along.

Yes, maybe they should. In fact probably they should. But this thread is about the causes of the recorded increase in autism, so it's perfectly valid to point out that one possible reason is that autistic people were not diagnosed as such in the past, so the statistics are distorted.

Originally Posted by Keweenaw

kudos for avoiding 'special snowflake' and 'imbecile' in this followup post.

"Special snowflake", you've got me on that one, but my use of "imbecile" was a deliberate quotation, and not my word. Just the other day I watched an episode of Who Do You Think You Are?, the BBC genealogy series, and one thing that stuck in my mind was the subject looking at a page from a Victorian-era census with entry after entry described as "Imbecile". (The census was of an asylum, by the way, although it might have been any town in Norfolk )

Oops, there I go belittling mental health problems again. (And I write as someone who has seen a close family member sectioned in the past few years, so believe me I know my way around lunacy, nutbaggery and other non-PC terms...)

[naita]

Originally Posted by naita

I don't doubt there's an increase in allergies

Originally Posted by lance strongarm

Yes, there is an increase in allergies.
If you don't think so, post your own epidemiological data showing otherwise.

Quotes shortened for emphasis.

[naita]

Originally Posted by lance strongarm

A good resource, with actual science.

http://www.cdc.gov/features/autismprevalence/

From that resource:

The reasons for the increase in the identified prevalence of ASDs are not understood completely. Some of the increase is due to the way children are identified, diagnosed, and served in their local communities, although exactly how much is due to these factors is unknown. Also, it is likely that reported increases are explained partly by greater awareness by doctors, teachers, and parents.

This is exactly what's being claimed in this thread and some evidence for changes in diagnosis practices being a major contributor has been offered.

[naita]

Originally Posted by lance strongarm

I haven't offered a hypothesis.

I am merely pointing out that others who claim they know the cause need to back up theirs.

These are hypotheses:

Remember, some of the MR diagnoses may be going to other things too, such as learning disability.

Another possibility is increased testing and abortion when conditions causing MR are detected.

They were offered up in response to a perfectly good statistical analysis indicating changes in diagnostic practices are a major contributing factor. You've offered no evidence, beyond your conjecture, that they significantly impact that analysis.

[lance strongarm]

Originally Posted by Colophon

Yes, maybe they should. In fact probably they should. But this thread is about the causes of the recorded increase in autism, so it's perfectly valid to point out that one possible reason is that autistic people were not diagnosed as such in the past, so the statistics are distorted.

Absolutely. I was just refining the point.

"Special snowflake", you've got me on that one,

Yeah, let's avoid that kind of thing.

[lance strongarm]

Originally Posted by naita

These are hypotheses:


They were offered up in response to a perfectly good statistical analysis indicating changes in diagnostic practices are a major contributing factor. You've offered no evidence, beyond your conjecture, that they significantly impact that analysis.

Ah, those. That's fine.

I only offer these as possibilities. I do not claim that they are proven. They simply are alternatives. They cast doubt on the claim that this "perfectly good statistical analysis" proves what you say it does. It is another possible reason for the results.

[lance strongarm]

Originally Posted by naita

From that resource:



This is exactly what's being claimed in this thread and some evidence for changes in diagnosis practices being a major contributor has been offered.

I have no quibble with that.

[lance strongarm]

Originally Posted by naita

Quotes shortened for emphasis.

My apologies, I read you wrong.

[monstro]

I have no doubt that some parents "push" for a diagnosis. But I also think that parents are much more willing to have their kids examined for anything than they probably were 50-60 years ago. The more you look, the more you find.

Anyone remember Noah Joad's character from The Grapes of Wrath? It's one of my favorite novels, and that character has always remained with me. He had a difficult birth and everyone knew there was something not quite right about him. Partways into the trip to California, he takes off on his own, making his alienation complete. Maybe he had Asperger's!

Back in the day, eccentrics were all lumped together--distinguished only from the retarded and the crazy. In recent years, we have come to realize that "eccentric" is too broad of a term. Some are people are weird from birth, some turn into bizarre creatures during childhood, and for others, the Boo Radley-switch is flipped in adulthood. IMHO, clinicians and lay people mistakenly treat these as fungible groups. But the DSM seems to be trending back to its "lumping" tradition, and I think this is wise. It's recognition that treating symptoms makes more sense than coming up with arbitrary, meaningless labels.

I think as our understanding of the brain and human development improves, we will also see the lines blur for other kinds of neuropsychiatric disorders. The category of schizophrenic spectrum disorder is undergoing similiar shifts in the DSM-V.

One thing the stats don't tell us are the number of people who were diagnosed as having a ASD as children but no longer meet the criteria as adults. Also unaccounted for are individuals who manage to leave the diagnostic label behind during childhood, either because they no longer meet the criteria or because the original diagnosis was incorrect. Then, there are the adults who were not diagnosed as children but who have now received their golden membership card in the mail. Once we get a handle on these phenomena, we'll come closer to understanding if there's an argument to be made for over-diagnosis.

[NoBigDealer]

After 22+ years of dealing with a son with PDD, i still don't understand the world of Autism. I have two older children that have gifted abilities (131 IQ), and the youngest with PDD. What I've noticed in the years is that this "newly" addressed mental disorder is prevalent in male's. After that, it's basically a blue-eyed dominant trait. I was only 27 years old when i delivered. I'm petite in stature, and my husband was only 31 at the time. As far as the mental retardation stature, please....

[MsRobyn]

OK. As it happens, I'm sitting in a special education class intended for future special ed teachers, and this very issue was just now discussed by the professor. I have no written cites for this, just the word of a professor who, presumably, knows what he's talking about.

Special education services are often a process of negotiation between parents and the school. The parents want the world for their child, but the school wants to give the minimum. So the parents will either go doctor-shopping to find someone who will assign the diagnosis the parents want, or they will bully the school into giving them what they want by threatening to sue. My professor said that it doesn't happen all that often, but it does happen often enough that it's something of a concern.

[lance strongarm]

Originally Posted by MsRobyn

OK. As it happens, I'm sitting in a special education class intended for future special ed teachers, and this very issue was just now discussed by the professor. I have no written cites for this, just the word of a professor who, presumably, knows what he's talking about.

Whoa.

There are differing opinions, even among professors. Don't take his word as gospel.

Special education services are often a process of negotiation between parents and the school. The parents want the world for their child, but the school wants to give the minimum.

I have personally seen parents work hard to AVOID labels, because they find them stigmatizing, or they think that certain special ed labels will put their kid in a restrictive environment. So the opposite effect occurs too.

So the parents will either go doctor-shopping to find someone who will assign the diagnosis the parents want, or they will bully the school into giving them what they want by threatening to sue.

How can they sue to get a label from the school when it must come from a doctor?

And in most cases, schools laugh at lawsuits. They have a team of lawyers on staff, and parents don't.

Moreover, you forgot that he said it's a negotiation. Having a label actually doesn't mean that much. Every kid is judged by his/her specific needs when writing the IEP, regardless of labels. The needs and abilities vary widely within each label. Some kids with autism can barely function; others will go to college. In most cases, the label just isn't that important for getting services, though it might be in a school where resources are scarce.

P.S. It's cool that you're studying special ed. Undergrad or grad?

[RyJae]

I have no idea on if autism rates are increasing, or it is just MR being re-diagnosed*. I do however have an issue with the clumping of the spectrum. I am not happy when I see a someone who doesn't have "classic" autism using the term autistic without clarifying Aspergers etc.


The people I talk to at playgrounds, in the streets, shopping who when talking will say about their "autistic" child, grandchild, neighbor, friend, who has autism but surprisingly is an honors student in college/functions awesomely! Or as been said upthread about autism not being something we should cure. Those people may be in the spectrum, but they're not autistic.

My child flaps, rocks, bangs her head, bites herself, will eat/play with her feces, laughs when someone is crying, does not speak, wasn't potty trained until the age of seven, will elope with no concern for her safety, has ate a nightlite bulb, has no fear of fire/water. The list can go on

This is not something evolutionary, this is something bad. We need to find the cause. (sidenote I place my meager bets on ultrasounds, yeah not much to go on but due to circumstances my wife had more/longer ultrasounds than normally used)

*As for the correlation I cannot debunk this, but I do know from the special needs standpoint told to me by an old special education teacher, Downs Syndrome is all but extinct in the classrooms due to parents aborting. But I have little doubt that without ASL (and now ipads) my daughter could have been considered MR because how the hell are you supposed to know she can count/spell/read/understand without communicating.

[lance strongarm]

Originally Posted by RyJae

*As for the correlation I cannot debunk this, but I do know from the special needs standpoint told to me by an old special education teacher, Downs Syndrome is all but extinct in the classrooms due to parents aborting. But I have little doubt that without ASL (and now ipads) my daughter could have been considered MR because how the hell are you supposed to know she can count/spell/read/understand without communicating.

As a parent of a kid with DS, I can assure you they are far from extinct, though that may change some day. The forces of abortion and testing are pushing one way, but the forces of acceptance and support are pushing in the other. A good book on the subject of parents choosing whether to abort, if you're interested, is Choosing Naia.

[RyJae]

Originally Posted by lance strongarm

As a parent of a kid with DS, I can assure you they are far from extinct, though that may change some day. The forces of abortion and testing are pushing one way, but the forces of acceptance and support are pushing in the other. A good book on the subject of parents choosing whether to abort, if you're interested, is Choosing Naia.

I am simply comparing (from a special needs teachers standpoint) the amount of students through the years she personally has had. I for one had a great aunt, Aunt Elsie who had Downs and was probably the most loving person I had ever met.

[lance strongarm]

Originally Posted by RyJae

I am simply comparing (from a special needs teachers standpoint) the amount of students through the years she personally has had. I for one had a great aunt, Aunt Elsie who had Downs and was probably the most loving person I had ever met.

Don't worry, I wasn't complaining about your comment, just noting that kids with DS are still out there in sizable numbers.

[monstro]

[quote=RyJae;15502139]

The people I talk to at playgrounds, in the streets, shopping who when talking will say about their "autistic" child, grandchild, neighbor, friend, who has autism but surprisingly is an honors student in college/functions awesomely! Or as been said upthread about autism not being something we should cure. Those people may be in the spectrum, but they're not autistic.

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.

This is not something evolutionary, this is something bad.

I agree.

[Maeglin]

Originally Posted by RyJae

My child flaps, rocks, bangs her head, bites herself, will eat/play with her feces, laughs when someone is crying, does not speak, wasn't potty trained until the age of seven, will elope with no concern for her safety, has ate a nightlite bulb, has no fear of fire/water. The list can go on

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.

[AboutAsWeirdAsYouCanGet]

I have no idea on if autism rates are increasing, or it is just MR being re-diagnosed*. I do however have an issue with the clumping of the spectrum. I am not happy when I see a someone who doesn't have "classic" autism using the term autistic without clarifying Aspergers etc.


The people I talk to at playgrounds, in the streets, shopping who when talking will say about their "autistic" child, grandchild, neighbor, friend, who has autism but surprisingly is an honors student in college/functions awesomely! Or as been said upthread about autism not being something we should cure. Those people may be in the spectrum, but they're not autistic.

My child flaps, rocks, bangs her head, bites herself, will eat/play with her feces, laughs when someone is crying, does not speak, wasn't potty trained until the age of seven, will elope with no concern for her safety, has ate a nightlite bulb, has no fear of fire/water. The list can go on

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.

[lance strongarm]

Originally Posted by monstro

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.

Great point!

It shows that the labels are inadequate and shouldn't be relied upon too much to describe individuals.

It makes more sense to put everything on a single spectrum and just check off those symptoms a kid exhibits

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.

[lance strongarm]

Originally Posted by AboutAsWeirdAsYouCanGet

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.

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.

[Maeglin]

Originally Posted by lance strongarm

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.

[lance strongarm]

Originally Posted by Maeglin

The labels are important insofar as they determine eligibility for services.

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.

[Maeglin]

Originally Posted by lance strongarm

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.

I can't tell what your point is.

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.

[lance strongarm]

Originally Posted by Maeglin

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.

Yes.

But once the label is slapped on, it doesn't determine the level of services. It just gets you in the door.

Sometimes people imply that when you have a label, you can get whatever you want with it.

[Keweenaw]

Originally Posted by lance strongarm

Yes.

But once the label is slapped on, it doesn't determine the level of services. It just gets you in the door.

Sometimes people imply that when you have a label, you can get whatever you want with it.

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.

[lance strongarm]

Originally Posted by Keweenaw

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.

[Maeglin]

Originally Posted by lance strongarm

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.

[Precambrianmollusc]

Originally Posted by Maeglin

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

Or as my son would say

+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

[lance strongarm]

Originally Posted by Maeglin

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.

Yes, that's what I'm saying.

Others think its magical goodies. It's not.

[MsRobyn]

Originally Posted by Precambrianmollusc

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'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.

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

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.)

[monstro]

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.