Discovering Autism
December 18, 2011 8:59 AM Subscribe
An in-depth series in the Los Angeles Times examines whether the increased recognition of autism as a syndrome has led to skyrocketing rates of diagnosis, and how social, ethnic, and geographic factors affect the treatment a child is likely to receive. (via)
Part One: An epidemic of disease or of discovery?
Part Two: Warrior parents fare best in securing autism services
Part Three: Families cling to hope of autism 'recovery'
Part Four: Finding traces of autism in earlier eras
Part One: An epidemic of disease or of discovery?
Part Two: Warrior parents fare best in securing autism services
Part Three: Families cling to hope of autism 'recovery'
Part Four: Finding traces of autism in earlier eras
I was at a race yesterday and someone was wearing an Autism Speaks t-shirt that showed the increased rate of diagnosis over time on the back, followed by the words "We need answers!" or something like that. I had two thoughts: 1) That sentiment, while understandable, seems to assume that these rates are not related to diagnosis alone; 2) the shirt showed a rate for 2010, which seems premature since it's only 2011, and definitive diagnosis takes place sometime after the first birthday. The latter made me question the rest of the rates, which is unfortunate.
posted by OmieWise at 9:23 AM on December 18, 2011
posted by OmieWise at 9:23 AM on December 18, 2011
Isn't this similar to what happened with ADD/ADHD?
posted by desjardins at 9:29 AM on December 18, 2011
posted by desjardins at 9:29 AM on December 18, 2011
Parents shouldn't have to "fight".
True enough. But then unneeded care shouldn't go to children just because parents are personally convinced of its necessity. It's always going to be hard to find the happy medium between those extremes--no matter what the healthcare system.
posted by yoink at 9:59 AM on December 18, 2011 [1 favorite]
True enough. But then unneeded care shouldn't go to children just because parents are personally convinced of its necessity. It's always going to be hard to find the happy medium between those extremes--no matter what the healthcare system.
posted by yoink at 9:59 AM on December 18, 2011 [1 favorite]
Oh, and yes--this was a fabulous series of articles. Glad to see the poor old, much beleaguered LA Times is still capable of work of this caliber occasionally.
posted by yoink at 10:00 AM on December 18, 2011
posted by yoink at 10:00 AM on December 18, 2011
The "Warrior parent" thing is right on the money. If you you don't fight your children will get the bare minimum of services the school district can get by with. We've reached a level of détente with our district after engaging a lawyer/advocate and having professionals from our ABA provider accompany us to IEPs and visit the classroom (boy did the district hate that). Sometimes we just go to school on random days and say "I'm staying for the day" just to observe what they're doing (they don't like that either). On one of my random visits I found out that my son was was in the "regular" classroom so little (contrary to his IEP) that they were using his desk as the stand for their overhead projector. Sigh...
posted by MikeMc at 10:05 AM on December 18, 2011 [8 favorites]
posted by MikeMc at 10:05 AM on December 18, 2011 [8 favorites]
Fascinating subject. This is really superbly written for science journalism. I loved this bit:
Researchers looking for environmental causes of the autism boom keep stumbling across other explanations.
Irva Hertz-Picciotto, an epidemiologist at UC Davis, suspects that environmental triggers such as exposure to chemicals during pregnancy play a role. In a 2009 study, she started with a tantalizing lead — several autism clusters, mostly in Southern California, that her team had identified from disability and birth records.
But the hot spots could not be linked to chemical plants, waste dumps or any other obvious environmental hazards. Instead, the cases were concentrated in places where parents were highly educated and had easy access to treatment.
Peter Bearman, a sociologist at Columbia University, has demonstrated how such social forces are driving autism rates.
Analyzing state data, he identified a 386-square-mile area centered in West Hollywood that consistently produced three times as many autism cases as would be expected from birth rates.
Affluence helped set the area apart. But delving deeper, Bearman detected a more surprising pattern that existed across the state: Rich or poor, children living near somebody with autism were more likely to have the diagnosis themselves.
. . .
The reason, his analysis suggested, was simple: People talk.
posted by spitbull at 10:05 AM on December 18, 2011 [2 favorites]
Researchers looking for environmental causes of the autism boom keep stumbling across other explanations.
Irva Hertz-Picciotto, an epidemiologist at UC Davis, suspects that environmental triggers such as exposure to chemicals during pregnancy play a role. In a 2009 study, she started with a tantalizing lead — several autism clusters, mostly in Southern California, that her team had identified from disability and birth records.
But the hot spots could not be linked to chemical plants, waste dumps or any other obvious environmental hazards. Instead, the cases were concentrated in places where parents were highly educated and had easy access to treatment.
Peter Bearman, a sociologist at Columbia University, has demonstrated how such social forces are driving autism rates.
Analyzing state data, he identified a 386-square-mile area centered in West Hollywood that consistently produced three times as many autism cases as would be expected from birth rates.
Affluence helped set the area apart. But delving deeper, Bearman detected a more surprising pattern that existed across the state: Rich or poor, children living near somebody with autism were more likely to have the diagnosis themselves.
. . .
The reason, his analysis suggested, was simple: People talk.
posted by spitbull at 10:05 AM on December 18, 2011 [2 favorites]
What sounds diseased to me is hoping that your child is diagnosed with a disease.
A few bad apples...
posted by TheRedArmy at 10:11 AM on December 18, 2011
A few bad apples...
posted by TheRedArmy at 10:11 AM on December 18, 2011
...ruin it for those with real problems.
I realized upon rereading that my intended meaning was not well-inferred.
posted by TheRedArmy at 10:13 AM on December 18, 2011
I realized upon rereading that my intended meaning was not well-inferred.
posted by TheRedArmy at 10:13 AM on December 18, 2011
But the hot spots could not be linked to chemical plants, waste dumps or any other obvious environmental hazards. Instead, the cases were concentrated in places where parents were highly educated and had easy access to treatment.
Silicon Valley (Santa Clara Valley) California is also a hotspot, so much so that Autism and Asperger's is sometimes referred to as The Engineer's Disease.
posted by eye of newt at 10:17 AM on December 18, 2011
Silicon Valley (Santa Clara Valley) California is also a hotspot, so much so that Autism and Asperger's is sometimes referred to as The Engineer's Disease.
posted by eye of newt at 10:17 AM on December 18, 2011
What sounds diseased to me is hoping that your child is diagnosed with a disease
Anyone who has ever had some vague, uncertain set of symptoms knows how powerfully you yearn for a definitive diagnosis--to some extent independently of the hope that that will lead to treatment. I imagine that's an even more urgent feeling when it comes to a parent's anxieties about their child.
posted by yoink at 10:20 AM on December 18, 2011 [7 favorites]
Anyone who has ever had some vague, uncertain set of symptoms knows how powerfully you yearn for a definitive diagnosis--to some extent independently of the hope that that will lead to treatment. I imagine that's an even more urgent feeling when it comes to a parent's anxieties about their child.
posted by yoink at 10:20 AM on December 18, 2011 [7 favorites]
yoink: Wouldn't you want a correct diagnosis above all?! Not one influenced by diamond rings or missed breakfasts?
I have my own vague uncertain symptoms, and I yearn for a definitive diagnosis and treatment, so I strive to be as honest with medical professionals as possible. My above comments were about those in the article who seemed to be trying to game the system, not parents of autism spectrum kids in general.
posted by TheRedArmy at 10:35 AM on December 18, 2011
I have my own vague uncertain symptoms, and I yearn for a definitive diagnosis and treatment, so I strive to be as honest with medical professionals as possible. My above comments were about those in the article who seemed to be trying to game the system, not parents of autism spectrum kids in general.
posted by TheRedArmy at 10:35 AM on December 18, 2011
My above comments were about those in the article who seemed to be trying to game the system, not parents of autism spectrum kids in general.
I think you're misunderstanding the basic premise here.
I'm the father of an autistic child. I began noticing symptoms at around 18 months (having worked with the disabled for about ten years, these symptoms kinda jump out at me). So we have a talk with her playschool teachers, and sure enough, she's completely removed from the group, isolating herself, not participating.
When you find yourself at this point, yes, you want to get a correct diagnosis above all. What you call "gaming the system" is rather fighting for the best possible service you can get for your child, because if you don't fight for it, you're pretty much on your own.
You don't game the system; the system games you.
posted by Marisa Stole the Precious Thing at 10:48 AM on December 18, 2011 [19 favorites]
I think you're misunderstanding the basic premise here.
I'm the father of an autistic child. I began noticing symptoms at around 18 months (having worked with the disabled for about ten years, these symptoms kinda jump out at me). So we have a talk with her playschool teachers, and sure enough, she's completely removed from the group, isolating herself, not participating.
When you find yourself at this point, yes, you want to get a correct diagnosis above all. What you call "gaming the system" is rather fighting for the best possible service you can get for your child, because if you don't fight for it, you're pretty much on your own.
You don't game the system; the system games you.
posted by Marisa Stole the Precious Thing at 10:48 AM on December 18, 2011 [19 favorites]
This is a fascinating use of geographical analysis; if anyone has links to the original studies, they'd be appreciated.
posted by desjardins at 11:02 AM on December 18, 2011
posted by desjardins at 11:02 AM on December 18, 2011
Marisa Stole the Precious Thing: You don't game the system; the system games you.
I'm sure the gaming can go in either direction. You might have to fight the system to get a valid case of autism recognized; however, I'm pretty sure that sufficient fighting could get a normal kid diagnosed as being on the spectrum as well.
posted by Mitrovarr at 11:06 AM on December 18, 2011
I'm sure the gaming can go in either direction. You might have to fight the system to get a valid case of autism recognized; however, I'm pretty sure that sufficient fighting could get a normal kid diagnosed as being on the spectrum as well.
posted by Mitrovarr at 11:06 AM on December 18, 2011
I have a number of friends with children on the spectrum, ranging from absolutely classical hand-flapping barely-verbal autism to a genius with Asperger's to a kid who definitively has some cognitive differences, but nobody has figured out exactly what. The deal with wanting a diagnosis is this: once you have a diagnosis, you can get services. Once you have a diagnosis, you can get an IEP so that your child can be given the accommodations he needs to succeed. These are frequently very minor; when my friend's son P was given an IQ test under standard conditions, he scored at a 57, but when he was allowed to take the test without a time limit, to circle the correct answer on the test sheet instead of coloring in the little bubble, and to have an aide there to re-direct his attention to the test (NOT to talk about the questions or answers in any way, just to say "P, sit down and focus on your work please"), he scored a 135. That's a pretty big difference.
Having that diagnosis can be the difference between scraping along, barely passing your classes, and being punished for failing to be a one-sized-fits-all child in utterly arbitrary ways that have nothing to do with learning and the classroom experience, or getting As and Bs and graduating with your class. OR it can be the difference between being able to be in a regular classroom at all, actually learning things albeit at a delayed level, and being warehoused in a "special education" classroom that is neither special nor education.
Once you have a diagnosis, you have a legal basis on which to fight. J, the genius with Asperger's? His mother has to fight for him on nearly a daily basis, because he's so smart that he could scrape by with a D+ or C- even in a completely hostile classroom. And the school is like, well, we don't promise you that your kid will get an A, so fuck you, you're on your own. The accommodations he needs are so minor -- like, if he sits in the back of the room so he's not distracting the other kids, he can stand up and rock from foot to foot next to his desk -- and yet she has to get a lawyer involved every year to make them stick to their own plan. If she didn't have the diagnosis and the plan, he'd be totally SOL.
posted by KathrynT at 11:07 AM on December 18, 2011 [22 favorites]
Having that diagnosis can be the difference between scraping along, barely passing your classes, and being punished for failing to be a one-sized-fits-all child in utterly arbitrary ways that have nothing to do with learning and the classroom experience, or getting As and Bs and graduating with your class. OR it can be the difference between being able to be in a regular classroom at all, actually learning things albeit at a delayed level, and being warehoused in a "special education" classroom that is neither special nor education.
Once you have a diagnosis, you have a legal basis on which to fight. J, the genius with Asperger's? His mother has to fight for him on nearly a daily basis, because he's so smart that he could scrape by with a D+ or C- even in a completely hostile classroom. And the school is like, well, we don't promise you that your kid will get an A, so fuck you, you're on your own. The accommodations he needs are so minor -- like, if he sits in the back of the room so he's not distracting the other kids, he can stand up and rock from foot to foot next to his desk -- and yet she has to get a lawyer involved every year to make them stick to their own plan. If she didn't have the diagnosis and the plan, he'd be totally SOL.
posted by KathrynT at 11:07 AM on December 18, 2011 [22 favorites]
I guess I was just dismayed that the lady in the first part of the article denied her child breakfast in order to put him in the worst mood possible for his evaluation.
posted by TheRedArmy at 11:11 AM on December 18, 2011
posted by TheRedArmy at 11:11 AM on December 18, 2011
I'm sure the gaming can go in either direction. You might have to fight the system to get a valid case of autism recognized; however, I'm pretty sure that sufficient fighting could get a normal kid diagnosed as being on the spectrum as well.
And I'd be very curious to know what portion of the parents fighting for a diagnosis for their child are literally trying to get their child slapped with this, because this sounds so much like Welfare Moms With Cadillacs it's ridiculous.
posted by Marisa Stole the Precious Thing at 11:11 AM on December 18, 2011 [8 favorites]
And I'd be very curious to know what portion of the parents fighting for a diagnosis for their child are literally trying to get their child slapped with this, because this sounds so much like Welfare Moms With Cadillacs it's ridiculous.
posted by Marisa Stole the Precious Thing at 11:11 AM on December 18, 2011 [8 favorites]
Marisa Stole the Precious Thing: And I'd be very curious to know what portion of the parents fighting for a diagnosis for their child are literally trying to get their child slapped with this, because this sounds so much like Welfare Moms With Cadillacs it's ridiculous.
Oh, I don't think they're doing it for resources, I think they're doing it out of displaced hypochondria and fear that poor school performance will doom their children. I think they honestly believe their kids have it, but internet diagnoses by untrained people are unreliable at best.
Realistically, however, I think this is probably only a small issue with autism. ADHD is the disorder where this becomes really important.
posted by Mitrovarr at 11:17 AM on December 18, 2011 [1 favorite]
Oh, I don't think they're doing it for resources, I think they're doing it out of displaced hypochondria and fear that poor school performance will doom their children. I think they honestly believe their kids have it, but internet diagnoses by untrained people are unreliable at best.
Realistically, however, I think this is probably only a small issue with autism. ADHD is the disorder where this becomes really important.
posted by Mitrovarr at 11:17 AM on December 18, 2011 [1 favorite]
You have to wonder how much of this is about our increasingly cut-throat economy and about conformism - parents (like Dias in the first article, who talks about not wanting her son to be an outsider) getting so scared that their kids won't be "normal" or able to make it in our safety-net-less society that they will do anything it takes to game the system and get behavioral coaching. I wonder whether, if I were ten today, I would have an IEP on grounds of being bright, awkward and weird. Would I have done better with behavioral coaching? I'd be a different person with a lot of corners rubbed smooth - is that better or not? Hard to say.
posted by Frowner at 11:18 AM on December 18, 2011 [1 favorite]
posted by Frowner at 11:18 AM on December 18, 2011 [1 favorite]
Mitrovarr: but if your child doesn't have ADHD, what benefit will they get from being diagnosed with it?
posted by KathrynT at 11:19 AM on December 18, 2011
posted by KathrynT at 11:19 AM on December 18, 2011
My above comments were about those in the article who seemed to be trying to game the system
Seconding the sentiments of Marisa; you're missing that a diagnosis is a key, of sorts, to access avenues of therapies that would not be available to you otherwise.
If you can walk, you don't need a wheelchair. Now imagine that the *only* way you can get a wheelchair is to *prove* to someone that you really need it. They have a limited number of wheelchairs -- it's appropriate for them to ask pointed questions of the people that say they need it. But still ... a wheelchair would change your life. You'd be grateful if you found someone that said, yes, you qualify for a chair.
Otherwise, you might be left with a diagnosis like PDD-NOS, which is a scientific way of saying, we don't really know what, if anything, is wrong with you, but you just don't look right.
posted by Cool Papa Bell at 11:21 AM on December 18, 2011 [2 favorites]
Seconding the sentiments of Marisa; you're missing that a diagnosis is a key, of sorts, to access avenues of therapies that would not be available to you otherwise.
If you can walk, you don't need a wheelchair. Now imagine that the *only* way you can get a wheelchair is to *prove* to someone that you really need it. They have a limited number of wheelchairs -- it's appropriate for them to ask pointed questions of the people that say they need it. But still ... a wheelchair would change your life. You'd be grateful if you found someone that said, yes, you qualify for a chair.
Otherwise, you might be left with a diagnosis like PDD-NOS, which is a scientific way of saying, we don't really know what, if anything, is wrong with you, but you just don't look right.
posted by Cool Papa Bell at 11:21 AM on December 18, 2011 [2 favorites]
But if you DON'T get a diagnosis, shouldn't you be pleased your child doesn't have autism? That's what I'm missing, I think.
posted by TheRedArmy at 11:27 AM on December 18, 2011 [1 favorite]
posted by TheRedArmy at 11:27 AM on December 18, 2011 [1 favorite]
KathrynT: but if your child doesn't have ADHD, what benefit will they get from being diagnosed with it?
Well, it's mostly the same issue; people think their kids have it, when they are really just within the limits of normal human variation.
Also, the drugs used for ADHD do increase concentration and study ability for at least some normal people (they're widely abused for this purpose). So getting an active but normal child drugged with ADHD meds will probably increase their grades and such.
posted by Mitrovarr at 11:27 AM on December 18, 2011
Well, it's mostly the same issue; people think their kids have it, when they are really just within the limits of normal human variation.
Also, the drugs used for ADHD do increase concentration and study ability for at least some normal people (they're widely abused for this purpose). So getting an active but normal child drugged with ADHD meds will probably increase their grades and such.
posted by Mitrovarr at 11:27 AM on December 18, 2011
This is a very good series of articles, really well written, covered a lot of bases in an even way.
Another good resource is the site for Richard Grinker's "Unstrange Minds," which has a lot of in-depth info in a similar vein, in the context of his global/ethnographic study of autism.
posted by carter at 11:32 AM on December 18, 2011
Another good resource is the site for Richard Grinker's "Unstrange Minds," which has a lot of in-depth info in a similar vein, in the context of his global/ethnographic study of autism.
posted by carter at 11:32 AM on December 18, 2011
Oh, in the LA Times article it mentions research done in Korea that uncovered a high incidence (1 in 35?) - Grinker was involved in that study.
posted by carter at 11:34 AM on December 18, 2011
posted by carter at 11:34 AM on December 18, 2011
Mitrovarr, it is so, so, SO MUCH EASIER to get your child on meds for ADHD than it is to make the school accommodate them without meds. Getting Ritalin or Adderall is no fight at all; it's getting the school to work with your kid (with or without drugging them) that's the problem. Whatever your personal concerns may be about putting kids on amphetamines to increase their performance regardless of an actual condition may be, that is clearly not an institutional concern.
posted by KathrynT at 11:35 AM on December 18, 2011 [1 favorite]
posted by KathrynT at 11:35 AM on December 18, 2011 [1 favorite]
But if you DON'T get a diagnosis, shouldn't you be pleased your child doesn't have autism?
Generally, if you're seeking a diagnosis of autism, you have a reason to be doing so (e.g. you're seeing the behaviors and lack of progress at home).
Imagine you had chest pain. You go to the doctor, thinking you're having a heart attack. He says, you're not having a heart attack.
Great, but what about the pain? The pain is still real.
Yes, but it's not a heart attack.
But it still hurts. I really think it's something I need help with. I mean, the pain is shooting down my left arm and everything.
It's not a heart attack. And if it's not a heart attack, it's not my problem.
Is there anything you can do?
Sure. I could do all sorts of of things to treat you. But it's not a heart attack. Go home.
But...
I said, go home.
posted by Cool Papa Bell at 11:36 AM on December 18, 2011 [14 favorites]
Generally, if you're seeking a diagnosis of autism, you have a reason to be doing so (e.g. you're seeing the behaviors and lack of progress at home).
Imagine you had chest pain. You go to the doctor, thinking you're having a heart attack. He says, you're not having a heart attack.
Great, but what about the pain? The pain is still real.
Yes, but it's not a heart attack.
But it still hurts. I really think it's something I need help with. I mean, the pain is shooting down my left arm and everything.
It's not a heart attack. And if it's not a heart attack, it's not my problem.
Is there anything you can do?
Sure. I could do all sorts of of things to treat you. But it's not a heart attack. Go home.
But...
I said, go home.
posted by Cool Papa Bell at 11:36 AM on December 18, 2011 [14 favorites]
CPB: not just "go home," but "go back to school and try to work alongside your peers with this horrible shooting pain. No, you can't get out of gym class. Study hard! Finals are coming up!"
posted by KathrynT at 11:45 AM on December 18, 2011 [9 favorites]
posted by KathrynT at 11:45 AM on December 18, 2011 [9 favorites]
On the other hand, sometimes it was just indigestion, and the only prize for browbeating the doctor and threatening lawsuits is unnecessary drugs with harmful side effects or a totally useless and harmful operation.
I'm not saying you should never fight, mind you; I am just saying you need to proceed with caution, and at least consider the possibility that the doctor is actually right. Particularly if you are not a trained professional in this area.
posted by Mitrovarr at 11:48 AM on December 18, 2011 [2 favorites]
I'm not saying you should never fight, mind you; I am just saying you need to proceed with caution, and at least consider the possibility that the doctor is actually right. Particularly if you are not a trained professional in this area.
posted by Mitrovarr at 11:48 AM on December 18, 2011 [2 favorites]
On the other hand, sometimes it was just indigestion
Sure, totally understood. I'm sure there are many people that jump at shadows. But don't miss the point of the analogy -- generally, seeking a diagnosis is the end point of a process, not the beginning of one.
And keep in mind ... indigestion goes away, or the missed heart attack diagnosis kills you and we'll have our definitive answer.
Autism doesn't go away, and a missed diagnosis won't kill you outright.
It'll just doom your son.
Forever.
posted by Cool Papa Bell at 11:56 AM on December 18, 2011 [2 favorites]
Sure, totally understood. I'm sure there are many people that jump at shadows. But don't miss the point of the analogy -- generally, seeking a diagnosis is the end point of a process, not the beginning of one.
And keep in mind ... indigestion goes away, or the missed heart attack diagnosis kills you and we'll have our definitive answer.
Autism doesn't go away, and a missed diagnosis won't kill you outright.
It'll just doom your son.
Forever.
posted by Cool Papa Bell at 11:56 AM on December 18, 2011 [2 favorites]
This article from last year suggests that only half of rise in autism cases can be attributed to better detection.
posted by leibniz at 12:11 PM on December 18, 2011
posted by leibniz at 12:11 PM on December 18, 2011
Oh, I don't think they're doing it for resources, I think they're doing it out of displaced hypochondria and fear that poor school performance will doom their children. I think they honestly believe their kids have it, but internet diagnoses by untrained people are unreliable at best.
Well, this brings us to this:
This article from last year suggests that only half of rise in autism cases can be attributed to better detection.
Here's what the article suggests are contributing causes:
1. Professionals being able to better identify autism.
2. Increased awareness.
3. Older parents (which does increase the risk of having an autistic child).
4. Possibly (for the remaining half): decreasing stigma attached to it, environmental factors, "social causes" - all of which may take years to pin down.
Not seeing anything there about "hypochondriac parents", but I can tell you this - in my experience there is very little willingness from diagnostic professionals to go ahead and give a child the diagnosis of being on the autism spectrum, if they find no evidence for it, simply because the parent is insisting that the child is autistic. If anything, these professionals are very reluctant to make this diagnosis. An autistic child requires a great deal more care in multiple aspects of their lives, almost all of it non-pharmaceutical (unlike ADHD, where pharmaceutical remedies are at hand). Rubber-stamping a normal functioning child with autism runs counter to their motivations.
posted by Marisa Stole the Precious Thing at 12:30 PM on December 18, 2011 [3 favorites]
Well, this brings us to this:
This article from last year suggests that only half of rise in autism cases can be attributed to better detection.
Here's what the article suggests are contributing causes:
1. Professionals being able to better identify autism.
2. Increased awareness.
3. Older parents (which does increase the risk of having an autistic child).
4. Possibly (for the remaining half): decreasing stigma attached to it, environmental factors, "social causes" - all of which may take years to pin down.
Not seeing anything there about "hypochondriac parents", but I can tell you this - in my experience there is very little willingness from diagnostic professionals to go ahead and give a child the diagnosis of being on the autism spectrum, if they find no evidence for it, simply because the parent is insisting that the child is autistic. If anything, these professionals are very reluctant to make this diagnosis. An autistic child requires a great deal more care in multiple aspects of their lives, almost all of it non-pharmaceutical (unlike ADHD, where pharmaceutical remedies are at hand). Rubber-stamping a normal functioning child with autism runs counter to their motivations.
posted by Marisa Stole the Precious Thing at 12:30 PM on December 18, 2011 [3 favorites]
per desjardins request: links to some research:
These are my best guesses, and the particular research referenced unfortunately appears to be gated for both authors, but I tracked down alternatives:
Gated:
The Rise in Autism and the Role of Age at Diagnosis
Irva Hertz-Picciotto (2009)
There is also this by the same researcher (also gated):
Geographic distribution of autism in California: A retrospective birth cohort analysis
NOT Gated:
The CHARGE Study: An Epidemiologic Investigation of Genetic and Environmental Factors Contributing to Autism
Bearman's Work:
Gated:
The spatial structure of autism in California, 1993–2001
and a similarly focused
Risk as Social Context: Immigration Policy and Autism in California
NOT gated by same researcher
Social Influence and the Autism Epidemic
Memail for more info.
posted by zenon at 12:57 PM on December 18, 2011 [5 favorites]
These are my best guesses, and the particular research referenced unfortunately appears to be gated for both authors, but I tracked down alternatives:
Gated:
The Rise in Autism and the Role of Age at Diagnosis
Irva Hertz-Picciotto (2009)
There is also this by the same researcher (also gated):
Geographic distribution of autism in California: A retrospective birth cohort analysis
NOT Gated:
The CHARGE Study: An Epidemiologic Investigation of Genetic and Environmental Factors Contributing to Autism
Bearman's Work:
Gated:
The spatial structure of autism in California, 1993–2001
and a similarly focused
Risk as Social Context: Immigration Policy and Autism in California
NOT gated by same researcher
Social Influence and the Autism Epidemic
Memail for more info.
posted by zenon at 12:57 PM on December 18, 2011 [5 favorites]
KathrynT: but if your child doesn't have ADHD, what benefit will they get from being diagnosed with it?
But if you DON'T get a diagnosis, shouldn't you be pleased your child doesn't have autism?
As others have mentioned, you'll get access to social, educational and governmental resources that most parents don't have access to. In the increasingly competitive college and school admissions process, this can be a big advantage. In addition, instead of just having a strange kid, or a developmentally disabled kid, your kid will have a diagnosis of autism, which has less social stigma attached to it.
posted by formless at 1:20 PM on December 18, 2011 [1 favorite]
But if you DON'T get a diagnosis, shouldn't you be pleased your child doesn't have autism?
As others have mentioned, you'll get access to social, educational and governmental resources that most parents don't have access to. In the increasingly competitive college and school admissions process, this can be a big advantage. In addition, instead of just having a strange kid, or a developmentally disabled kid, your kid will have a diagnosis of autism, which has less social stigma attached to it.
posted by formless at 1:20 PM on December 18, 2011 [1 favorite]
Personal theory: there were just as many autistic people 50 years ago. They flunked out of school early so the system didn't notice them. They were janitors, assembly line workers, garbage men, soldiers. They also were a huge proportion of the alcoholics and drug addicts. Many died young in all the ways it was easier to die young back then -- car crashes, street violence, Vietnam. They often went through life without seeing a doctor. They did not live long or happy lives.
I believe what we're seeing now is correct identification of a pre-existing disease, because for the first time we have the resources to do something about it.
posted by miyabo at 1:39 PM on December 18, 2011 [8 favorites]
I believe what we're seeing now is correct identification of a pre-existing disease, because for the first time we have the resources to do something about it.
posted by miyabo at 1:39 PM on December 18, 2011 [8 favorites]
From Part 2: Few other states have anything like [the Lanterman Act]. Services are free for life, regardless of a family's means. Last year the system cost taxpayers about $4 billion, including $638 million for services for autistic clients.
I'm curious if providing good services for children with disabilities saves the taxpayers money in the long run. My son received terrible services at school until recently, when we brought in the big guns and fought to make some dramatic changes. While this year his education has probably cost the taxpayers -- of which I am one -- more than the previous year's did, I expect that the therapy and support he's receiving now will help him be an independent and accomplished adult.
posted by The corpse in the library at 1:53 PM on December 18, 2011 [1 favorite]
I'm curious if providing good services for children with disabilities saves the taxpayers money in the long run. My son received terrible services at school until recently, when we brought in the big guns and fought to make some dramatic changes. While this year his education has probably cost the taxpayers -- of which I am one -- more than the previous year's did, I expect that the therapy and support he's receiving now will help him be an independent and accomplished adult.
posted by The corpse in the library at 1:53 PM on December 18, 2011 [1 favorite]
> I wonder whether, if I were ten today, I would have an IEP on grounds of being bright, awkward and weird.
No. Those traits would not qualify you for IEP services.
posted by The corpse in the library at 1:55 PM on December 18, 2011 [3 favorites]
No. Those traits would not qualify you for IEP services.
posted by The corpse in the library at 1:55 PM on December 18, 2011 [3 favorites]
Neurotypical kids who are atypical in some other way are systematically beaten down and abused -- usually metaphorically but not always -- in our country's school systems, do you really think the parents of autistic children don't have to fight tooth and nail to have their child treated correctly?
Fifteen or so years ago, when my parents first realized something was wrong, doctors tried to get my mother to confess to drug-use. She had never even smoked a cigarette, had a glass of wine once in awhile -- NOT while she was pregnant -- and they desperately wanted her to be a drug-addict. Then it was ADD. Then it was some slew of acronyms I don't even remember. Then, finally, in a new school system in a different state, it was autism. Then, finally, we could help him the way he needed to be helped.
I wonder at all these people who seem to think that false diagnoses are dropped into parents' laps all the time. It's obvious most of them have never been around mental illness. Being weird doesn't get you on the program. I'm weird. My sister is weird. My parents are really, really weird. My brother has an illness. When you live with someone most of your life you can tell.
posted by Auguris at 2:04 PM on December 18, 2011 [4 favorites]
Fifteen or so years ago, when my parents first realized something was wrong, doctors tried to get my mother to confess to drug-use. She had never even smoked a cigarette, had a glass of wine once in awhile -- NOT while she was pregnant -- and they desperately wanted her to be a drug-addict. Then it was ADD. Then it was some slew of acronyms I don't even remember. Then, finally, in a new school system in a different state, it was autism. Then, finally, we could help him the way he needed to be helped.
I wonder at all these people who seem to think that false diagnoses are dropped into parents' laps all the time. It's obvious most of them have never been around mental illness. Being weird doesn't get you on the program. I'm weird. My sister is weird. My parents are really, really weird. My brother has an illness. When you live with someone most of your life you can tell.
posted by Auguris at 2:04 PM on December 18, 2011 [4 favorites]
Autism as a label still has a stigma. Try having a child who has it, then go out to eat some where or grocery shopping.
I've had people a table over insist on correcting my child because obviously I was doing it wrong since my kid was asking the same question over and over. And at the grocery store a patron told me, "If he has autism you should have left him home."
posted by FunkyHelix at 2:04 PM on December 18, 2011 [3 favorites]
I've had people a table over insist on correcting my child because obviously I was doing it wrong since my kid was asking the same question over and over. And at the grocery store a patron told me, "If he has autism you should have left him home."
posted by FunkyHelix at 2:04 PM on December 18, 2011 [3 favorites]
ADHD, bipolar disorder, autism - these are labels for things humans have been suffering with, in confusion, and being denied real progress and happiness because of it, for thousands of years. This is exactly like the era when we were figuring out that infections are caused by bacteria and viruses, not sin or "bad air," only we're dealing with these mental illnesses now, instead of things you can see on a blood test. You don't get to be called autistic because you're strange, you get that label when you have a very narrow set of symptoms that are obviously interfering with your life - keeping you from being successful with school, with family, with taking care of yourself, with just about everything.
The reason the parent in that story denied her kid breakfast is because she knew she couldn't count on the worst symptoms showing up on cue. Kids with autism have good days and great days and lots and lots of lousy days; if getting your one-time evaluation on a great day will buy you a lifetime of lousy days, you had better believe people will do whatever they can to ensure that one day isn't great. Is it ethical? Maybe, maybe not. If I weren't so sure it was a necessary, frustrating, horrible calculation to be making, I could say for certain one way or the other.
No one really wants a label like autism. What they want is help, and the label is a ticket to getting that help.
Full disclosure: my niece and nephew are both autistic and have benefited tremendously from their mother's continuous fight to get them the help they absolutely need. We flipping rejoiced when my niece started using full sentences, sporadically, at the age of 8. If my sister-in-law could have done without the assistance she's getting, trust me, she would not have fought as hard as she has to get it.
posted by SMPA at 2:06 PM on December 18, 2011 [9 favorites]
The reason the parent in that story denied her kid breakfast is because she knew she couldn't count on the worst symptoms showing up on cue. Kids with autism have good days and great days and lots and lots of lousy days; if getting your one-time evaluation on a great day will buy you a lifetime of lousy days, you had better believe people will do whatever they can to ensure that one day isn't great. Is it ethical? Maybe, maybe not. If I weren't so sure it was a necessary, frustrating, horrible calculation to be making, I could say for certain one way or the other.
No one really wants a label like autism. What they want is help, and the label is a ticket to getting that help.
Full disclosure: my niece and nephew are both autistic and have benefited tremendously from their mother's continuous fight to get them the help they absolutely need. We flipping rejoiced when my niece started using full sentences, sporadically, at the age of 8. If my sister-in-law could have done without the assistance she's getting, trust me, she would not have fought as hard as she has to get it.
posted by SMPA at 2:06 PM on December 18, 2011 [9 favorites]
This whole labeling question is of great interest to me because I believe I would have been diagnosed with Asperger's if I were a child today. I was the classic "little professor," reading at 3, memorizing stuff excessively, going on about my obsessions, overwhelmed by sensory issues (no itchy clothes! terrified of the subway, loud sounds freaked me out), all kinds of OCD/repetitive behavior (mostly not visible to others because I was ashamed of it), didn't like to be touched, constantly bullied, socially clueless and highly literal. I was diagnosed as "hyperesthetic," which just means hypersensitive and then was in gifted programs.
All the oversensitivity stuff meant that I was constantly labeled "bossy" and "selfish" for doing stuff that would help me calm down. I was told I "wasn't a people person and was more interested in things." Basically, I wound up hating myself and thinking I was irreparably evil and I wonder if I'd known about Asperger's, whether I'd felt far better realizing there was something that explained all these weird characteristics. Alternatively, maybe I would have felt limited by it and seen it as a disability that meant I'd never be able to have a normal life, but since I sort of already felt that way without the label, i doubt it would have been worse.
What's strange now is that people completely don't believe me when I say I was 100% diagnosable as a child because I make my living as a writer in a way that's totally dependent on "theory of mind." My problem was actually not under-empathizing but over-empathizing and getting so distressed by this that I had to run away rather than help. Once I was aware of that and could mitigate the sensory distress, I found I'm actually quite skilled at putting myself in the position of others and imagining what it's like there and I wrote a book about empathy.
The problems with empathy that people on the spectrum have seem to come from being so overwhelmed with their own sensory stuff that they miss signals from others— they don't know they're being clueless, but they do care when they find out and can learn to get better if they can be in sensory environments where they feel safe. There may be some who genuinely do care more about things than people, but that's not been my experience.
Anyway, so I support labeling kids as long as its done in a context that recognizes that there are amazing gifts as well as hardships that come from the way people on the spectrum perceive the world and that once you know what a problem is, you are much closer to the solution than you are if you don't know what's wrong. You don't want the child to think it means that they can never have friends or succeed in life, you want them to think that it means there are ways of addressing the particular issues they have that get in the way of that once they're identified. Of course, however, labeling people and simply applying stigma and viewing it as sheer limitation is harmful.
posted by Maias at 3:06 PM on December 18, 2011 [4 favorites]
All the oversensitivity stuff meant that I was constantly labeled "bossy" and "selfish" for doing stuff that would help me calm down. I was told I "wasn't a people person and was more interested in things." Basically, I wound up hating myself and thinking I was irreparably evil and I wonder if I'd known about Asperger's, whether I'd felt far better realizing there was something that explained all these weird characteristics. Alternatively, maybe I would have felt limited by it and seen it as a disability that meant I'd never be able to have a normal life, but since I sort of already felt that way without the label, i doubt it would have been worse.
What's strange now is that people completely don't believe me when I say I was 100% diagnosable as a child because I make my living as a writer in a way that's totally dependent on "theory of mind." My problem was actually not under-empathizing but over-empathizing and getting so distressed by this that I had to run away rather than help. Once I was aware of that and could mitigate the sensory distress, I found I'm actually quite skilled at putting myself in the position of others and imagining what it's like there and I wrote a book about empathy.
The problems with empathy that people on the spectrum have seem to come from being so overwhelmed with their own sensory stuff that they miss signals from others— they don't know they're being clueless, but they do care when they find out and can learn to get better if they can be in sensory environments where they feel safe. There may be some who genuinely do care more about things than people, but that's not been my experience.
Anyway, so I support labeling kids as long as its done in a context that recognizes that there are amazing gifts as well as hardships that come from the way people on the spectrum perceive the world and that once you know what a problem is, you are much closer to the solution than you are if you don't know what's wrong. You don't want the child to think it means that they can never have friends or succeed in life, you want them to think that it means there are ways of addressing the particular issues they have that get in the way of that once they're identified. Of course, however, labeling people and simply applying stigma and viewing it as sheer limitation is harmful.
posted by Maias at 3:06 PM on December 18, 2011 [4 favorites]
Seconding SMPA's "good test day - bad test day" explanation. I have worked with my county's ARC and met a pair of brothers with similar developmental disabilities, to about the same degree. One brother had a "good" test day and rides the bus daily to the ARC for school, day care and employment services. He enjoys his time and social life there and is safe and respected. His brother fights dogs aNd gets mixed up in crappy ill-planned schemes and is in and out of jail. He had a "bad" test day.
posted by toodleydoodley at 3:09 PM on December 18, 2011 [1 favorite]
posted by toodleydoodley at 3:09 PM on December 18, 2011 [1 favorite]
i was an asshole in the last thread, so i will try to be less of an asshole here. but i wonder three things:
a) i wonder if we are living in a time where autistic people are developing autistic voices--and the call for self identity allows for a new kind of diagnosis.
b) Autism Speaks, and other orgs. like it think there are more autistic people, because they are engaging in an epidemic model, but what happens if we say--this is not a sickness, or an illness--the medical model is uniquely unsuited to deal with these issues, and because of that, what are the other options on the table? these options will never be explored if parents think they can control their kids, if teachers think that this is a problem seeking active solutions, and if doctors keep throwing shit at it that may or may not stick. (for example--parallel play, which is this great autistic skill, is not isolating, is not the social isolation that people think it is, it's really hard to explain--but people close to the baseline think that it should be pathologized, instead of figuring out what it means to play apart and together--i was talking about this at the disability studies international assoc. last year, and said to a mother--yes, paralell play is good, using that moral language, as a way of destigimitziing the autistic self)
c) autism, much like other ways of thinking that have been medicalised, is a really baggy deft.there are a number of behaviours that seem to come under one category--special interests, obsessiveness, a kind of taxonmic desire, a distance from the body, a use of langauge, but are these one thing or seven things or no thing, or is this how we handle eccentricity now,
i genuinely don't have an answer, but the article was really smart, because it let autisic voices talk for themselves, didn't let parents take over, and said, we don;t know.
posted by PinkMoose at 3:22 PM on December 18, 2011 [1 favorite]
a) i wonder if we are living in a time where autistic people are developing autistic voices--and the call for self identity allows for a new kind of diagnosis.
b) Autism Speaks, and other orgs. like it think there are more autistic people, because they are engaging in an epidemic model, but what happens if we say--this is not a sickness, or an illness--the medical model is uniquely unsuited to deal with these issues, and because of that, what are the other options on the table? these options will never be explored if parents think they can control their kids, if teachers think that this is a problem seeking active solutions, and if doctors keep throwing shit at it that may or may not stick. (for example--parallel play, which is this great autistic skill, is not isolating, is not the social isolation that people think it is, it's really hard to explain--but people close to the baseline think that it should be pathologized, instead of figuring out what it means to play apart and together--i was talking about this at the disability studies international assoc. last year, and said to a mother--yes, paralell play is good, using that moral language, as a way of destigimitziing the autistic self)
c) autism, much like other ways of thinking that have been medicalised, is a really baggy deft.there are a number of behaviours that seem to come under one category--special interests, obsessiveness, a kind of taxonmic desire, a distance from the body, a use of langauge, but are these one thing or seven things or no thing, or is this how we handle eccentricity now,
i genuinely don't have an answer, but the article was really smart, because it let autisic voices talk for themselves, didn't let parents take over, and said, we don;t know.
posted by PinkMoose at 3:22 PM on December 18, 2011 [1 favorite]
I enjoyed the series, and know all about fighting for that label. PDD-NOS is like some kind of special ed purgatory. My son has ADHD, Aspergers and a host of other conditions. He's mainstreamed for only half his classes despite his intelligence because the school doesnt have enough inclusion specialists to go around. He's a junior in high school. How much do I push for? How much would realistically change? I can't afford an advocate, so it's just me and my emails and notes and meetings.
However, on an up note, he planned and hosted a party all by himself today. I had a crowd of teenagers, some on the spectrum, some just awkward, sitting around eating all of my food and watching the Star Wars Holiday Special. This is a boy who never had a play date and who used to spend recess talking to a metal pole in the playground. I'm verklempt just thinking about it.
posted by Biblio at 6:05 PM on December 18, 2011 [8 favorites]
However, on an up note, he planned and hosted a party all by himself today. I had a crowd of teenagers, some on the spectrum, some just awkward, sitting around eating all of my food and watching the Star Wars Holiday Special. This is a boy who never had a play date and who used to spend recess talking to a metal pole in the playground. I'm verklempt just thinking about it.
posted by Biblio at 6:05 PM on December 18, 2011 [8 favorites]
I went though round after round of testing as a kid in the late 70 and early 80s. I displayed what was characterized as flatness of affect. I was pretty much the same as I suspect many people here were. One test I remember very specifically administered at the White Institute in New York, I was asked to simply draw pictures with colored makers. I drew typical pictures of things I all kids are interested in, planes, cars, etc. On each picture I made tics with each marker I used, I was trying to keep a record of each marker I had used in each picture. They were convinced I was not autistic but there was something wrong with me. I went to a child psychologist 2 times a week for over 10 years to deal with flatness of affect, not liking to be touched and a million other things.
It is still somewhat hard for me. Close friends complain when I try to get out of hugging. I am doomed to repeat the same conversation where I explain to people I simply don't understand why they are upset about certain things. I don't hate them, I'm not really mean, and the fact that I don't share things in the same way they do is not a reflection on them. It just doesn't occur to me to tell them about my day unless I'm prompted.
Still don't know what the hell I have.
posted by Ad hominem at 6:16 PM on December 18, 2011 [3 favorites]
It is still somewhat hard for me. Close friends complain when I try to get out of hugging. I am doomed to repeat the same conversation where I explain to people I simply don't understand why they are upset about certain things. I don't hate them, I'm not really mean, and the fact that I don't share things in the same way they do is not a reflection on them. It just doesn't occur to me to tell them about my day unless I'm prompted.
Still don't know what the hell I have.
posted by Ad hominem at 6:16 PM on December 18, 2011 [3 favorites]
After reading the article about 1% of people being diagnosed with autism across a few places and time periods I'm curious, if autism is a spectrum, what the opposite end of it is. Are the people out there with another ill defined disorder that are basically the other end of this bell curve and the rest of us are in the middle?
posted by fshgrl at 6:43 PM on December 18, 2011
posted by fshgrl at 6:43 PM on December 18, 2011
After reading the article about 1% of people being diagnosed with autism across a few places and time periods I'm curious, if autism is a spectrum, what the opposite end of it is. Are the people out there with another ill defined disorder that are basically the other end of this bell curve and the rest of us are in the middle?
The spectrum, as identified by the Childhood Autism Rating Scale (CARS), has non-autistic children on one end, and deeply, unresponsive autistic children on the other. And so those without autism aren't on the bell curve at all.
Most children with autism are somewhere in between one end of the spectrum or the other. While there are a certain set of behaviors common to the autistic, they might not all manifest themselves the same way or in the same combinations in every autistic child.
posted by Marisa Stole the Precious Thing at 6:54 PM on December 18, 2011
The spectrum, as identified by the Childhood Autism Rating Scale (CARS), has non-autistic children on one end, and deeply, unresponsive autistic children on the other. And so those without autism aren't on the bell curve at all.
Most children with autism are somewhere in between one end of the spectrum or the other. While there are a certain set of behaviors common to the autistic, they might not all manifest themselves the same way or in the same combinations in every autistic child.
posted by Marisa Stole the Precious Thing at 6:54 PM on December 18, 2011
After reading the article about 1% of people being diagnosed with autism across a few places and time periods I'm curious, if autism is a spectrum, what the opposite end of it is. Are the people out there with another ill defined disorder that are basically the other end of this bell curve and the rest of us are in the middle?
Williams syndrome has been described in those terms, but subsequent research has shown that view to be overly simplistic.
posted by introcosm at 7:15 PM on December 18, 2011 [1 favorite]
Williams syndrome has been described in those terms, but subsequent research has shown that view to be overly simplistic.
posted by introcosm at 7:15 PM on December 18, 2011 [1 favorite]
Interesting, thanks for the answers.
This article and others I've read describe people with autism as kind of having more extreme versions of traits that we all have. Which made me wonder if that's the case or if people on the autistic spectrum do have some traits the rest of us don't have but we just don't have words to describe them so the writers use the closest terms that exist.
posted by fshgrl at 7:32 PM on December 18, 2011
This article and others I've read describe people with autism as kind of having more extreme versions of traits that we all have. Which made me wonder if that's the case or if people on the autistic spectrum do have some traits the rest of us don't have but we just don't have words to describe them so the writers use the closest terms that exist.
posted by fshgrl at 7:32 PM on December 18, 2011
I think the autism spectrum is something like height. If you're a 4'10" woman in America, you're considered normal. If you're 4'9", it's considered a disorder and you'll receive treatment and accomodations. In some ways this is silly -- out of 1000 women, 3 will be under 4'10" just due to the way the bell curve works. (Maybe some others will be short due to specific causes like malnutrition or congenital dwarfism.) But even though it isn't a specific disease, being that short has very real effects on your ability to function in our society (driving is pretty hard), so we prescribe treatment when possible.
We don't pathologize the other end of the height spectrum. 4'9" is a medical problem; 6'9" is a ticket to join the NBA. But that asymmetry has a lot to do with the nature of our society. If we lived in hobbit-sized tunnels, then very tall people would have a serious problem and very short people would be celebrated. It happens that you can't function in our society with some of the traits of autism, while the opposite traits (gregariousness? charisma? empathy?) are not particularly detrimental.
I don't believe evolution keeps wholly undesirable genes around. It's a good thing that there's a range of heights in any human population, and it's a good thing that there's a range of places people fall on the autism spectrum. Maybe we'd be better off if there were a sharp cutoff and no one ever turned out under 4'10" tall, or past a certain point on the autism spectrum. But that's not how evolution works. Genes can only set a mean and a standard deviation, not an exact threshold, so there are always outliers.
posted by miyabo at 9:06 PM on December 18, 2011 [2 favorites]
We don't pathologize the other end of the height spectrum. 4'9" is a medical problem; 6'9" is a ticket to join the NBA. But that asymmetry has a lot to do with the nature of our society. If we lived in hobbit-sized tunnels, then very tall people would have a serious problem and very short people would be celebrated. It happens that you can't function in our society with some of the traits of autism, while the opposite traits (gregariousness? charisma? empathy?) are not particularly detrimental.
I don't believe evolution keeps wholly undesirable genes around. It's a good thing that there's a range of heights in any human population, and it's a good thing that there's a range of places people fall on the autism spectrum. Maybe we'd be better off if there were a sharp cutoff and no one ever turned out under 4'10" tall, or past a certain point on the autism spectrum. But that's not how evolution works. Genes can only set a mean and a standard deviation, not an exact threshold, so there are always outliers.
posted by miyabo at 9:06 PM on December 18, 2011 [2 favorites]
You know, I can understand how it might seem bad to want your child to be diagnosed with a disease.
But as an illustration of why diagnosis is so important, I'll share a little about my situation.
I have two children, both of whom have experienced speech delays. My daughter, when she was 18 months old, could say only three words. She would engage in elaborate pantomimes. She could follow a multiple step command- "Here, take these orange peels and go put them in the garbage, then come eat your orange"- but couldn't say a one syllable word.
I just wanted to get her evaluated. I just wanted a professional opinion. My husband needed speech therapy as a child, so did my mom, and my first cousin on my father's side. It didn't seem unreasonable that my daughter might need it, too.
I called our family doctor. The receptionist told me, "The doctor won't write an order for an evaluation until the child is two years old and has no words at all." I chewed on this for awhile. At 18 months, my daughter had three words. Two years with no words would never come.
I called a pediatric therapy office nearby. I asked if I could just get her evaluated there and pay cash. "We would have no way to bill you," they said.
I called our benefits specialist at my husband's employer's human resources office. I called our insurance company. I switched general practitioners, and that took a few months, to get my daughter an appointment.
Finally I found the state's Early On office. The speech therapist comes to your house, albeit only once a month. The lovely lady from the state broke it down for me.
"You have great insurance," she said. "You need to switch doctors, as many times as necessary, until you get one to write the evaluation order. So many doctors adhere to the 'no evals until two with zero words' standard, and I cannot understand why. Speech professionals like to see a vocabulary of 100 to 200 words at twenty four months. Once you get the evaluation, ask for a 'scientific diagnosis'. A lot of therapists will diagnose a generic speech delay, and then the doctor has to sign off on it. Your insurance will probably pay for less than half of the therapy bill with that diagnosis. If the therapist writes down 'apraxia' instead, the insurance will cover all of it with no further testing, because apraxia is neurological, and the neurological testing is so horribly expensive that just paying for the speech therapy is cheaper for the insurance company."
And so, this is what we did. We had to switch family doctors, again, and got one who would write the eval order. My daughter got evaluated, and diagnosed (with apraxia), and started therapy twice a week just before her second birthday. Her initial treatment was learning ASL (which we had to do, too), just to get her communicating. She took to this like a duck to water. She's five now, a chatterbox, fully intelligible, but still signs while she speaks sometimes, especially if she's tired. ASL was truly her first language. She went to therapy for two and half years, we didn't have to pay a dime out of pocket, and you know what? Therapy worked. She started preschool at age four and communicated with no problems.
When my son was 18 months old, he had the exact pattern that my daughter had at that age. I called our family doctor, and asked for an eval order- I didn't even have to make an appointment with her!- and got him in within a week. He was also diagnosed with apraxia. I fought the good fight the first time, so I was able to get my son services right away. He started speech therapy at 18 months. We were able to skip ASL completely because he started therapy so young. I can't really believe what a difference that six months made. Now, at 30 months, he is far ahead of where he sister was at this age. The biller made a mistake this summer, and coded my son's diagnosis as "general speech delay" instead of "apraxia", and we started getting four and five figure bills in the mail. It took two months to rectify the mistake, with lots of phone calls and letter writing.
The moral of this tl;dr story is that if my kids had gotten stuck with a "general speech delay" diagnosis, they would not have gotten therapy, or, at least, not nearly as much. We simply could not afford an extra one or two thousand dollars per month. We live on $32,000 per year. But because they got the "apraxia" diagnosis, they got the services they needed, as much as they needed, and, in the case of my son, in a timely manner.
Nobody really knows if my kids have apraxia, since neither of them ever went through the battery of neurological tests needed to prove the diagnosis. I have no idea if they actually have it and I don't care. All I care about is the fact that they can talk now.
Parents don't care if the diagnosis is "spawn of Satan" if it gets their kids the help they need. It's all bureaucratic box-checking anyway, as any therapist worth her salt customizes her approach and technique to each client. Neither of my children is autistic, but if I had to get that diagnosis for them so that they could get services, I would have hunted under every rock and log until I found some quack with an M.D. that would have checked those boxes and signed below. If you want to criticize the system that forces parents to do this, great. But don't criticize the hoop jumpers who are just doing their job as parents.
posted by Leta at 9:28 PM on December 18, 2011 [19 favorites]
But as an illustration of why diagnosis is so important, I'll share a little about my situation.
I have two children, both of whom have experienced speech delays. My daughter, when she was 18 months old, could say only three words. She would engage in elaborate pantomimes. She could follow a multiple step command- "Here, take these orange peels and go put them in the garbage, then come eat your orange"- but couldn't say a one syllable word.
I just wanted to get her evaluated. I just wanted a professional opinion. My husband needed speech therapy as a child, so did my mom, and my first cousin on my father's side. It didn't seem unreasonable that my daughter might need it, too.
I called our family doctor. The receptionist told me, "The doctor won't write an order for an evaluation until the child is two years old and has no words at all." I chewed on this for awhile. At 18 months, my daughter had three words. Two years with no words would never come.
I called a pediatric therapy office nearby. I asked if I could just get her evaluated there and pay cash. "We would have no way to bill you," they said.
I called our benefits specialist at my husband's employer's human resources office. I called our insurance company. I switched general practitioners, and that took a few months, to get my daughter an appointment.
Finally I found the state's Early On office. The speech therapist comes to your house, albeit only once a month. The lovely lady from the state broke it down for me.
"You have great insurance," she said. "You need to switch doctors, as many times as necessary, until you get one to write the evaluation order. So many doctors adhere to the 'no evals until two with zero words' standard, and I cannot understand why. Speech professionals like to see a vocabulary of 100 to 200 words at twenty four months. Once you get the evaluation, ask for a 'scientific diagnosis'. A lot of therapists will diagnose a generic speech delay, and then the doctor has to sign off on it. Your insurance will probably pay for less than half of the therapy bill with that diagnosis. If the therapist writes down 'apraxia' instead, the insurance will cover all of it with no further testing, because apraxia is neurological, and the neurological testing is so horribly expensive that just paying for the speech therapy is cheaper for the insurance company."
And so, this is what we did. We had to switch family doctors, again, and got one who would write the eval order. My daughter got evaluated, and diagnosed (with apraxia), and started therapy twice a week just before her second birthday. Her initial treatment was learning ASL (which we had to do, too), just to get her communicating. She took to this like a duck to water. She's five now, a chatterbox, fully intelligible, but still signs while she speaks sometimes, especially if she's tired. ASL was truly her first language. She went to therapy for two and half years, we didn't have to pay a dime out of pocket, and you know what? Therapy worked. She started preschool at age four and communicated with no problems.
When my son was 18 months old, he had the exact pattern that my daughter had at that age. I called our family doctor, and asked for an eval order- I didn't even have to make an appointment with her!- and got him in within a week. He was also diagnosed with apraxia. I fought the good fight the first time, so I was able to get my son services right away. He started speech therapy at 18 months. We were able to skip ASL completely because he started therapy so young. I can't really believe what a difference that six months made. Now, at 30 months, he is far ahead of where he sister was at this age. The biller made a mistake this summer, and coded my son's diagnosis as "general speech delay" instead of "apraxia", and we started getting four and five figure bills in the mail. It took two months to rectify the mistake, with lots of phone calls and letter writing.
The moral of this tl;dr story is that if my kids had gotten stuck with a "general speech delay" diagnosis, they would not have gotten therapy, or, at least, not nearly as much. We simply could not afford an extra one or two thousand dollars per month. We live on $32,000 per year. But because they got the "apraxia" diagnosis, they got the services they needed, as much as they needed, and, in the case of my son, in a timely manner.
Nobody really knows if my kids have apraxia, since neither of them ever went through the battery of neurological tests needed to prove the diagnosis. I have no idea if they actually have it and I don't care. All I care about is the fact that they can talk now.
Parents don't care if the diagnosis is "spawn of Satan" if it gets their kids the help they need. It's all bureaucratic box-checking anyway, as any therapist worth her salt customizes her approach and technique to each client. Neither of my children is autistic, but if I had to get that diagnosis for them so that they could get services, I would have hunted under every rock and log until I found some quack with an M.D. that would have checked those boxes and signed below. If you want to criticize the system that forces parents to do this, great. But don't criticize the hoop jumpers who are just doing their job as parents.
posted by Leta at 9:28 PM on December 18, 2011 [19 favorites]
Which made me wonder if that's the case or if people on the autistic spectrum do have some traits the rest of us don't have but we just don't have words to describe them so the writers use the closest terms that exist.
For many kids diagnosed with ASD, I think it's more the latter. The article mentions somewhere that it is an orientation, and I think this is a good way to describe it. This oft-quoted article in introversion also describes introversion as an orientation, it's very similar. Autistic children (however defined) need respect and support for who they are
posted by carter at 5:59 AM on December 19, 2011
For many kids diagnosed with ASD, I think it's more the latter. The article mentions somewhere that it is an orientation, and I think this is a good way to describe it. This oft-quoted article in introversion also describes introversion as an orientation, it's very similar. Autistic children (however defined) need respect and support for who they are
posted by carter at 5:59 AM on December 19, 2011
Leta wrote: "The doctor won't write an order for an evaluation until the child is two years old and has no words at all."
As a speech-language pathologist (in the US) who has worked with children, nothing gets my blood boiling more than that phrase. I'm glad both your daughter and son are doing well and that therapy worked for them. As a therapist I have coached parents through the diagnosis maze and it's terrible how some MDs and some insurance companies are reasonable to work with and some are not, for *any* diagnosis (ASD, Apraxia of Speech, aphasia, just to name a few). Usually, if someone has a broken leg, casts and crutches are de facto. But have a broken speech system (or language system, &c.) or if there's a WHIFF of developmental delay in it for children (insurance companies in the US routinely deny apraxia of speech treatment because it was considered "developmental") and because it's something one can't see, it's much harder to get coverage (strangely, PDD-NOS doesn't have the same problem, I presume because it's on the autism spectrum).
On the flip side, the schools are in a bind because there's so much gray area about what services to provide: if a child has ASD, but is doing very well academically, then they don't necessarily automatically qualify for an IEP or for services, even if they have delays in the speech sound system (a.k.a phonology), or pragmatic language difficulties, to name a few. A child who has no formal diagnosis, but has terrible difficulties with academics, they would qualify for an IEP. I was lucky in that I worked in a district that gave me the room to make my case for just about any child. But not all therapists are so lucky. In those districts, parents absolutely must be strong advocates. Where things get messy is when the parent feels diagnosis x is warranted, but the professionals (whether in the district or not) disagree.
As for the "bagginess" of the diagnosis Ad hominem mentioned: I agree. The diagnostic criteria are behaviorally based (that is, you have to observe these behaviors to meet the criteria for the diagnosis). Researchers are looking for more concrete ways of determining ASD from other disorders (I'm in training to be one of them. If it pans out and I graduate, I'll let you all know :)
posted by absquatulate at 6:42 AM on December 19, 2011
As a speech-language pathologist (in the US) who has worked with children, nothing gets my blood boiling more than that phrase. I'm glad both your daughter and son are doing well and that therapy worked for them. As a therapist I have coached parents through the diagnosis maze and it's terrible how some MDs and some insurance companies are reasonable to work with and some are not, for *any* diagnosis (ASD, Apraxia of Speech, aphasia, just to name a few). Usually, if someone has a broken leg, casts and crutches are de facto. But have a broken speech system (or language system, &c.) or if there's a WHIFF of developmental delay in it for children (insurance companies in the US routinely deny apraxia of speech treatment because it was considered "developmental") and because it's something one can't see, it's much harder to get coverage (strangely, PDD-NOS doesn't have the same problem, I presume because it's on the autism spectrum).
On the flip side, the schools are in a bind because there's so much gray area about what services to provide: if a child has ASD, but is doing very well academically, then they don't necessarily automatically qualify for an IEP or for services, even if they have delays in the speech sound system (a.k.a phonology), or pragmatic language difficulties, to name a few. A child who has no formal diagnosis, but has terrible difficulties with academics, they would qualify for an IEP. I was lucky in that I worked in a district that gave me the room to make my case for just about any child. But not all therapists are so lucky. In those districts, parents absolutely must be strong advocates. Where things get messy is when the parent feels diagnosis x is warranted, but the professionals (whether in the district or not) disagree.
As for the "bagginess" of the diagnosis Ad hominem mentioned: I agree. The diagnostic criteria are behaviorally based (that is, you have to observe these behaviors to meet the criteria for the diagnosis). Researchers are looking for more concrete ways of determining ASD from other disorders (I'm in training to be one of them. If it pans out and I graduate, I'll let you all know :)
posted by absquatulate at 6:42 AM on December 19, 2011
What sounds diseased to me is hoping that your child is diagnosed with a disease.
A few bad apples...
Well, when a diagnosis of Autism means that your child gets treatment and a diagnosis of PPD-NOS means (despite often being just as debilitating and limiting & responding to the same treatment protocol as ASD) you get jack-shit in terms of resources ... you bet your ass that you'd hope that "your child is diagnosed with a disease."
Resources are allocated based on what DSM-IV number has been assigned to the displayed symptoms & is not at all based on how severely an individual's been impacted by their disorder.
Your ignorance is showing.
posted by echolalia67 at 8:03 AM on December 19, 2011 [1 favorite]
A few bad apples...
Well, when a diagnosis of Autism means that your child gets treatment and a diagnosis of PPD-NOS means (despite often being just as debilitating and limiting & responding to the same treatment protocol as ASD) you get jack-shit in terms of resources ... you bet your ass that you'd hope that "your child is diagnosed with a disease."
Resources are allocated based on what DSM-IV number has been assigned to the displayed symptoms & is not at all based on how severely an individual's been impacted by their disorder.
Your ignorance is showing.
posted by echolalia67 at 8:03 AM on December 19, 2011 [1 favorite]
Ad hominem: you sound like a delightful person. I enjoy people who don't feel the need to hug you (I like my friends, but I don't need to hug them every time I see them) and the world needs more people who don't automatically think the world needs to hear about your day. (have you read Facebook lately? The self-centeredness on that site is mind-boggling)
posted by Kokopuff at 8:23 AM on December 19, 2011 [1 favorite]
posted by Kokopuff at 8:23 AM on December 19, 2011 [1 favorite]
The part about adults with autism reminded me of this great Atlantic article from a few months ago about a 77-year-old autistic man.
posted by matildaben at 3:47 PM on December 19, 2011
posted by matildaben at 3:47 PM on December 19, 2011
"You know, I can understand how it might seem bad to want your child to be diagnosed with a disease.
But as an illustration of why diagnosis is so important, I'll share a little about my situation."
We were getting nowhere with our son's doctor so we ended up paying for an in-depth multi-session eval from the Medical College of Wisconsin. His diagnosis is PDD-NOS (37 on CARS) but the neuropsychologist at MCW said she would change the diagnosis to straight up "Autism" (a CARS score of 30 is apparently the cutoff for an Autism diagnosis) if that's what was needed for him to obtain services (it wasn't necessary). Apparently the only thing that kept our son son from getting a "classic" Autism diagnosis is that he would seek out interaction with my wife and I. Of course after that he was on a waiting list for well over a year for therapy funding despite being told for months that our son was "next on the list" and then it was only resolved after involving a local politician.
posted by MikeMc at 11:08 PM on December 19, 2011
But as an illustration of why diagnosis is so important, I'll share a little about my situation."
We were getting nowhere with our son's doctor so we ended up paying for an in-depth multi-session eval from the Medical College of Wisconsin. His diagnosis is PDD-NOS (37 on CARS) but the neuropsychologist at MCW said she would change the diagnosis to straight up "Autism" (a CARS score of 30 is apparently the cutoff for an Autism diagnosis) if that's what was needed for him to obtain services (it wasn't necessary). Apparently the only thing that kept our son son from getting a "classic" Autism diagnosis is that he would seek out interaction with my wife and I. Of course after that he was on a waiting list for well over a year for therapy funding despite being told for months that our son was "next on the list" and then it was only resolved after involving a local politician.
posted by MikeMc at 11:08 PM on December 19, 2011
« Older I don't care much about personal fame or... | Erich Von Stroheim's "Greed" Newer »
This thread has been archived and is closed to new comments
On the other hand, Jenny McCarthy needs to have a freight train dropped on her head.
posted by Cool Papa Bell at 9:15 AM on December 18, 2011 [26 favorites]