I can only speak for myself and my son's experience with Asperger's - and his treatment involves social skills therapy, therapy for anxiety, being a Cub Scout ( BIG AMAZING WONDERFUL THING FOR HIM ), and playing soccer. We don't subscribe to changing his diet - his food choices are so limited, I would hate to add more stress into his life. We create oppurtunities for him to interact with peers, and talk talk talk about appropriate interactions.
When someone says " Hello ", it's best to say " Hello " back, and not to respond by reciting that various colors of light sabers found amongst the various Jedi nights.
@Megan Brady: You are doing exactly what people like myself and mashkitten seem to be criticizing that a lot of people don't do. In fact, a lot of adult people diagnosed with ASD are against the exact things you are doing, saying that you must not try to make people live up to NT (neurotypical) standards, and a lot of the time, excusing terrible behavior because "we are not capable of empathy". And what they do offends me more as someone on the ASD than how they're offended by what you and several other parents are doing - saying I am not capable of empathy makes me sound like a psychopath, not a person with autism.
I'm oblivious to tiny little offenses I've committed over the years, where people show their distaste with expressions (like when I, as a teenager, didn't understand that to people, saying "X is worse than Y" implies both are bad, and isn't a synonym with "Y is better than X"), but I certainly *care* that I offended people, and want to avoid it in the future. If anything, I care more than the average person, cause I keep an exhausting mental log of all the ways I've offended people since childhood, to make sure I don't do them again.
@Jan74: I know that people on the spectrum have deep deep emotions - and have different and unique ways of expressing them. I get the sense that people confuse lack of empathy with a lack of understanding of motivation. My husband and I just want our son to be able to function in a world that is populated by NT's. He recieved occupational therapy so he could hold a pencil and write - why shouldn't he get help with social skills - We want him to be happy with who he is. And he makes me proud everyday. ( I tell him that every night - and he mumbles " I love you Mom ".)
As much as I understand the diagnosis of Asperger's, I can't help but feel insulted by it. I took a questionnaire the one time and answered true to a good percentage of the questions. Many of the questions were directed towards how you interacted with others and situations. Many questions more dealt with if I had smaller, closer groups of friends rather than larger group of not-so close friends. So I don't react that same as Nancy or have a plethora of friends like Suzy, so that makes me have a disorder or weird? I feel at times that the diagnosis is a cop out to call someone non-human for not being the same.
My brother was diagnosed with Asperger's at 27. The diagnosis has not only stopped my mom from helping my brother get over his fears, she actually babies any and all bad behavior he does (such as throwing a fit because we are eating something he doesn't want to or getting verbally, not yet physically, violent when we do something he doesn't like) and says it's his disorder and there is nothing that can be done.
I hear about those getting treatment and being re-socialized but I only often see the erratic behaviour not being treated or "Oh, it's the Asperger's, nothing we can do." I have met those who are diagnosed as with it who have perfectly normal social lives.
I have nothing against the diagnosis, just why it is diagnosed and often times how it is (not) treated.
I know the plural of anecdote isn't data, but I have to say that if someone called my mother for this poll, she would have answered yes to both questions, despite the fact that me, my sister, my husband and almost everyone else who knows my little brother believes he is just a pain in the ass and not truly autistic. Mom has diagnosis-shopped him since he was about five years old, and quit once she got an autism diagnosis when he was about 17. Now she writes off all of his troubles as side effects of his "disability," and he works it to his advantage, using it to get away with living in her basement, smoking pot and playing video games all day long.
I realize that many people truly are on the spectrum, but I have never seen such a blatant case of misdiagnosis in my entire life.
This subject always makes me think of two things - first, that we shouldn't be so quick to slap such specific labels on children without weighing the benefits versus the potential problems. Diagnosis can definitely help with treatment, but many parents are desperate for answers and may accept a diagnosis that doesn't really fit. Even if the diagnosis is proper, putting too much weight on it can be bad for kids, simply because it can lead them to believe things about themselves that may or may not be true in their case (i.e. people with asperger's never work, never have romantic relationships, never find a happy place in society, that kind of thing).
Second, that it would be interesting if the concern about "what we'll do" with autism spectrum kids as they age actually led to an examination of adults who currently fit the diagnostic criteria or would have as children (a much larger group than we think, I suspect). This is a largely ignored group, but vital to determining what kinds of services actually help adults with autism spectrum disorders thrive.
I think one of the reasons of increased diagnosis is because they've expanded what autism is. Years ago, people with Asperger's were just considered "awkward," or were diagnosed with other disorders (e.g. ADHD).
@PetiteGal: I've wondered that as well. I've run into several older men in my business that seemed to have Asperger's. Instead, they're just considered a bit strange. I wonder what a diagnosis would have meant to them. I honestly don't know if it would have been a positive or negative.
@jebash: You are both absolutely right. I was just "weird" growing up in the 70s - autists didn't speak and were boys, so I couldn't possibly be one of them, I was just antisocial and strange.
I was accidentally diagnosed as Asperger's at 28 years old, when I drove a friend and her 4 year old boy to an autism specialist, and he asked that we normal people take his autism diagnosis questionnaire alongside with her answers for him. He scored 32 out of 111, and he is now at 8 a non-verbal, severe autist; I scored 87 out of 111, which was the second highest score the doctor had ever seen.
It was freeing though, to realize that my lack of coordination and feelings of being overwhelmed with too much sensory input had an explanation, but I wonder if I'd been given the diagnosis at a young age, like a 20-year-old acquaintance was, if I'd be different - he was homeschooled and basically told he'd never work or date so he lives up to those expectations, whereas I was expected to go to a regular school and check my latest obsession to do homework, chores, and show up for work, and to swim since I wasn't coordinated enough to play volleyball, and other things like that. I wonder if for high-functioning ASD and Asperger's people, an early diagnosis with the low expectations that usually go with it isn't shortchanging them.
My personal opinion (full disclosure: I am not a doctor!) is that, while there may be environmental factors, at least part of the reason for the rise in autistic spectrum disorders is that more people with autism are having children. Autism used to be a diagonal disorder - it was something that your crazy aunt or uncle had, which prevented them from living normally in society, marrying, and having children. But now with the rise in technical and computer jobs, where no one cares if you wear the same shirt for two weeks as long as your code is good, more people with these disorders are meeting, falling in love, and having children, who may inherit the disorders.
@silver1881: Yup, I read a NYT Magazine article to this effect a few years ago-- basically, in Silicon Valley lots of folks with autism spectrum disorders are meeting each other, marrying, and reproducing. None of whom in the past would have had any hope of any of these things...
@silver1881: You are likely very right. Autism is now being used as the primary or co-primary diagnosis with intellectual disabilities, while a half a century ago most of these children and adults would have been labelled 'retarded', or possibly schizophrenic. Adults and children like myself, on the mild end of the spectrum, were labelled 'eccentric' and 'odd' but had no real helpful labels to access services we may need. We may have been diagnosed with a learning disorder (because of sensory, especially auditory processing, difficulties), or if quite talented in an area, be called a prodigy.
My son has been diagnosed with autism, and there is no evidence that his disorder is genetic. There is no history of autism in my family. There is no history of autism in my husband's family. My son, like many other children diagnosed with autism, is considered to be "high-functioning". This term simply means that his IQ is average or above-average. So, no, he didn't receive the diagnosis rather than a diagnosis of mental retardation. He's quite bright, as are the other children on the spectrum that I have met.
I do think that the threshold for diagnosing is growing ever lower/more sensitive, and that is one factor for the increase in diagnoses. However, I also think that something has changed in the environment that is triggering more cases of autism. I do not know what that is. I don't think it is vaccines.
This is a very frustrating disorder to deal with, as there is no definitive way to diagnose it, no clear-cut treatments, and insurance companies deny benefits with impunity.
@silver1881: My parents are not autistic, and I am. And they weren't older when I was born either, my mother was 19, so at the peak of her reproductive health (that one is for the person up there who said that older mothers = autistic children).
So none of these theories are right, it is just more diagnosis. Only severely non-verbal autists were called autists in the 70s, and now everyone on the spectrum gets diagnosed.
Jenny McCarthy enrages me on @ 100 levels. Her observations and ideas about autism and "curing " autism are nothing more than the verbal diarreha of a privileged person with no connection to how real people live. My son has Asperger's Syndrome, and one of the therapies that he participates in is Social Skills Therapy. A group of kids with ASD's meet weekly and learn accepted social interactions. ( They live in "our" world ) One of the moms was WEEPING because of an article in People about Ms. McCarthy, and all that she has done to " cure " her son. This mom was weeping because her twins with autism with never be
" cured " and that she and her husband are " bad " parents because they don't home school , shop at Whole Foods, and can't afford the alternative therapies that Ms. McCarthys son gets. That broke my heart. Here is a mom doing the best that she can - being made to feel like a " bad mom " because of people like McCarthy. ( off my Soap Box now )
@Megan Brady: Give that mom (and yourself) a big hug for me! Please know that many of us don't feel the same way that Jenny McCarthy does. It's frustrating how people can misapply and conflate things. The fact that the two of you bring your kids to this weekly meet shows just how much you both care about your children and are doing the best you can.
If autism really is growing more prevalent, we need to figure out if any environmental factors are contributing to this growth.
I'm going to blame high fructose corn syrup. Because it's convenient for me and my distaste for the sheer number of products that use it. I admit to having no scientific basis to blame it, I just don't like the junk.
But truthfully, is it really becoming more widespread, or is there just more awareness of the autism spectrum? Or possibly diagnosis-happy parents and docs (as we experienced with a lot of false ADD kids in the 90s and early 00s)? Genetic testing will be great to have and I certainly hope they get it down pat relatively soon.
@wednesdayam: I agree, but for different reasons. I think autism is diagnosed more nowdays, but I'm not sure it's a lot of false diagnoses, but the fact that autism was considered under the umbrella of mental retardation before, and now we know that there are a lot of different disorders that cause learning disabilities.
I also think it's compounded by the fact that in our lifetimes we have to encounter so many more strangers and have more advanced social skills. I can see how an autistic child would just be kept at home 100 years ago and considered "funny" but without something "medically" wrong with him. It's the nature of modern society that any kind of unusual behavior must have a disease behind it and be dealt with accordingly.
@Lymed: There are even some of us on Jez. With stars and everything.
The spectrum means that people like me--a bit odd, a bit obsessive, socially inept--are autistic, along with people like my patients at work, who may be nonverbal and not completely toilet trained at 10, or 15.
@Lymed: It does seem as though with a spectrum-model disease, there may be a lot of room for people on both ends of the spectrum. For example, what constitutes the "mildest" diagnosable case on the spectrum? Is it possible that the behaviors in that case could be attributed to something else, like say, a painfully shy child? In cases where autism presents along with other problems, is it possible that it's not actually autism but simply similar behaviors caused as a side-effects of the something else?
I don't know nearly enough about autism to have an opinion on those questions, but they seem like potential reasons why thinking about autism with a spectrum model might give a lot of false positives. It is probably the best way to approach it - but it still may have this problem.
@ladyfalcon is skin deep: But is the diagnosis of Autism the diagnosis of a specific condition or the diagnosis of a group of symptoms? Asperger's is a syndrome. A syndrome is generally given to a group of symptoms often that have no known cause. If Autism is also a syndrome, then whether somebody's symptoms are a result of a different known condition or not, the person still has Autism if they have that group of symptoms.
@Her Grace: I would be shocked if there weren't any people with Autism on Jez.
@Her Grace: I also think that alot of people have some symptoms of autism that are dianosed without being diabilitated by them. My Mother (who is a teacher with 35 years of experience teaching people with learning difficulties) believes that I am borderline autistic because I have situation specific OCD, can't deal with certain sounds or visual stimulation but I have no problems with social situations or anything like that.
@Lymed: Wiki defines it as a 'disorder of neural development', which seems to imply that it isn't a syndrome (and I had never heard that clinical definition of what a syndrome actually is, so thanks for that!). It goes on to note that the third diagnosis on the autism spectrum is something called PDD-NOS, which is "diagnosed when full criteria for the other two disorders are not met," which seems to mean that there's a lot of room for catch-alling with this diagnosis.
"Also, 40% of parents who answered yes to the first question said no to the second, which is odd because autism spectrum disorders are considered incurable."
That's a reason why this methodology is not a good one, but that defect would cause an underestimation of how many are affected, so it would not explain the increase, only point to this increase being even bigger.
@Dirk Anger: Not necessarily. They could have said yes to the first question because a doctor made the diagnosis but further opinions by other doctors did not agree.
These numbers don't seem crazy to me. Even if the survey is flawed. I can easily believe that 1% of the population has some form of an austism spectrum disorder.
But I don't believe that this is a new or epidemic phenomenon. Just that there is a wider and wider net for the diagnosis of folks who would never have been considered autistic when I was a kid.
I can easily name 5 people I knew growing up who I would consider to be candidates for the diagnosis. Probably more. And the ones I've kept track of are doing just fine as adults.
@andlemon: I agree. I have a friend in his mid-30s who was recently diagnosed with autism. He's always had a well-paying job and many friends but recently started seeing a psychiatrist for a growing sense of doom about not having a mate. He's rather aloof and pre-diagnosis, I would have called him a little too loud and a bit aloof. I can think of half a dozen people who I would similarly characterize.
If these people represent one end of the spectrum, the numbers seem about right.
@winner: I'm pretty sure that the guy one of my friends married is on the spectrum somewhere. Totally undiagnosed, but it's so plainly obvious to me. He's in grad school right now and already has another advanced degree, is married and has a kid, but the man has zero social skills to the point where you can't just explain it by him simply being a run-of-the-mill boor. He clearly doesn't understand the signals other people are sending to him to please shut up about your obsessions for 30 seconds and also please stop saying every single thing that pops into your head, especially if that thing is a blatant insult to someone present.
If someone displaying those symptoms is considered for the intent of this study to be autistic, then I can believe those stats.
@samarkand: This is basically what (at least partly) accounts for those 40% parents. PDD-NOS is the name given to those kids who are just barely diagnosable (pervasive developmental disorder, not otherwise specified), either because they are too impaired in other ways or because they are barely impaired at all. It's the "you have some autism-like stuff going on" label. Some of those children diagnosed will eventually outgrow it (some will not) because of what you said--their behaviours are autism-like, but not strictly autism.
The solid diagnoses (autism and Asperger's, which really is a legacy diagnosis and would be better fit in with autism itself) and the two other pervasive developmental conditions (Rett's and childhood disintegrative disorder) tend to stick.
We like to live with a belief that our doctors have all the answers, but they don't. The lack of a biological marker is a huge problem for many illnesses, conditions and syndromes including MS, Lupus, Fibromyalgia, Lyme and ALS. This is a huge problem because patients may get incorrect treatment and missed diagnoses can result in less research money to that illness.
I understand the problem of fear resulting from over-reporting of autism numbers. But I would rather some over-reporting if it means we can get more research into the condition.
When I read the article descriptor on the front page, I was going to make a joke about how the study consisted of one question: "Do you have autism? Y/N".
Sucks that the actual study wasn't all that different. Why didn't they ask diagnosticians how many cases they see per year? That seems much less biased and an M.D. might have a better understanding of what constitutes autism or the autism spectrum.
Plus, they probably had actual paperwork/records/questionnaires on file to back up the data.
@sumerfish: You can't ask individual medical providers because you would end up with one patient who sees multiple providers getting counted more than once. In order to prevent duplicate counts, you would need to get identifier information on the patients and that is a violation of HIPAA privacy laws.
@Lymed: Good point, I hadn't considered that. I wonder if there would be any way to identify patients by a one-time ID number specifically for this purpose...but that would require a lot of cooperation in record keeping that simply isn't in place. Perhaps public education could note it in its students?
I just think asking parents opens a can of worms because autism is kind of the popular self-diagnosis (or lay-diagnosis) for any kind of childhood awkwardness.
@sumerfish: The CDC and some state health agencies require the reporting of certain diagnoses and there is a government exemption allowing the sharing of personal health information for these purposes. These are generally infectious diseases that the government needs to track in order to be able to combat potential epidemics. I do know people who have received calls from their state public health department after being diagnosed with Lyme.
@sumerfish: There was a similar, but better, telephone survey relased by the NHS (in the UK). I'd reccomend reading about it, and I hope these researchers do, too: [leftbrainrightbrain.co.uk]
There are so many parents out there whose children clearly are afflicted with Aspergers and other Autism Spectrum disorders who simply cannot face and/or do not believe it. It can be heart-breaking.
@Our Lady of the Massacre: Exactly. Like so much in psychiatry (which, don't get me wrong, I think is awesome - they don't work for everyone but I am so thankful for SSRIs) it can be pretty unclear what counts as autism and whether autism is a unified thing. I, for one, think the diagnosis covers at least several different, distinguishable concerns. And that the distinctions seem very important for treatment.
Part of the problem with getting reliable numbers on autism diagnosis is that at the higher functioning end of the spectrum, like Asperger's, the diagnosis criteria is really sort of subjective. And it's kind of become a catch-all lately for people who are weird, but don't seem to have anything else diagnoseably (is this a word?) wrong with them
Also, my mom is currently convinced my younger brother has Asperger's, despite his psychiatrist disagreeing with her, so I could see how just those two questions could get very unreliable results
@colormeroutine: The criteria aren't too subjective--no more than any other disorder in the DSM (which is more a problem with the DSM). It's a series of sections, with a required number of "YES" in each section.
PDD-NOS, however, is totally subjective. It's a catch-all for the kids and adults who have some autistic traits but not enough to meet criteria (so this includes kids who are a bit socially off, a bit communicatively off, might be anything from severely impaired to incredibly mild).
@colormeroutine: I mean more that the actual criteria require a certain number of hits in each category of impairment. It's no less clear than autism (the only real difference between the two is early language). Hopefully Asperger's will be removed as a category and those of us diagnosed with it will be moved to autism, with a gradient for severity, in the next DSM (which is what I've heard proposed so far).
10/05/09
When someone says " Hello ", it's best to say " Hello " back, and not to respond by reciting that various colors of light sabers found amongst the various Jedi nights.
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I'm oblivious to tiny little offenses I've committed over the years, where people show their distaste with expressions (like when I, as a teenager, didn't understand that to people, saying "X is worse than Y" implies both are bad, and isn't a synonym with "Y is better than X"), but I certainly *care* that I offended people, and want to avoid it in the future. If anything, I care more than the average person, cause I keep an exhausting mental log of all the ways I've offended people since childhood, to make sure I don't do them again.
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My brother was diagnosed with Asperger's at 27. The diagnosis has not only stopped my mom from helping my brother get over his fears, she actually babies any and all bad behavior he does (such as throwing a fit because we are eating something he doesn't want to or getting verbally, not yet physically, violent when we do something he doesn't like) and says it's his disorder and there is nothing that can be done.
I hear about those getting treatment and being re-socialized but I only often see the erratic behaviour not being treated or "Oh, it's the Asperger's, nothing we can do." I have met those who are diagnosed as with it who have perfectly normal social lives.
I have nothing against the diagnosis, just why it is diagnosed and often times how it is (not) treated.
10/05/09
I realize that many people truly are on the spectrum, but I have never seen such a blatant case of misdiagnosis in my entire life.
10/05/09
Second, that it would be interesting if the concern about "what we'll do" with autism spectrum kids as they age actually led to an examination of adults who currently fit the diagnostic criteria or would have as children (a much larger group than we think, I suspect). This is a largely ignored group, but vital to determining what kinds of services actually help adults with autism spectrum disorders thrive.
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I was accidentally diagnosed as Asperger's at 28 years old, when I drove a friend and her 4 year old boy to an autism specialist, and he asked that we normal people take his autism diagnosis questionnaire alongside with her answers for him. He scored 32 out of 111, and he is now at 8 a non-verbal, severe autist; I scored 87 out of 111, which was the second highest score the doctor had ever seen.
It was freeing though, to realize that my lack of coordination and feelings of being overwhelmed with too much sensory input had an explanation, but I wonder if I'd been given the diagnosis at a young age, like a 20-year-old acquaintance was, if I'd be different - he was homeschooled and basically told he'd never work or date so he lives up to those expectations, whereas I was expected to go to a regular school and check my latest obsession to do homework, chores, and show up for work, and to swim since I wasn't coordinated enough to play volleyball, and other things like that. I wonder if for high-functioning ASD and Asperger's people, an early diagnosis with the low expectations that usually go with it isn't shortchanging them.
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Sorry, autism is (ha, irony) one of my special interests, as an autistic person (Asperger's being my diagnosis).
10/05/09
My son has been diagnosed with autism, and there is no evidence that his disorder is genetic. There is no history of autism in my family. There is no history of autism in my husband's family. My son, like many other children diagnosed with autism, is considered to be "high-functioning". This term simply means that his IQ is average or above-average. So, no, he didn't receive the diagnosis rather than a diagnosis of mental retardation. He's quite bright, as are the other children on the spectrum that I have met.
I do think that the threshold for diagnosing is growing ever lower/more sensitive, and that is one factor for the increase in diagnoses. However, I also think that something has changed in the environment that is triggering more cases of autism. I do not know what that is. I don't think it is vaccines.
This is a very frustrating disorder to deal with, as there is no definitive way to diagnose it, no clear-cut treatments, and insurance companies deny benefits with impunity.
10/05/09
So none of these theories are right, it is just more diagnosis. Only severely non-verbal autists were called autists in the 70s, and now everyone on the spectrum gets diagnosed.
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" cured " and that she and her husband are " bad " parents because they don't home school , shop at Whole Foods, and can't afford the alternative therapies that Ms. McCarthys son gets. That broke my heart. Here is a mom doing the best that she can - being made to feel like a " bad mom " because of people like McCarthy. ( off my Soap Box now )
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I'm going to blame high fructose corn syrup. Because it's convenient for me and my distaste for the sheer number of products that use it. I admit to having no scientific basis to blame it, I just don't like the junk.
But truthfully, is it really becoming more widespread, or is there just more awareness of the autism spectrum? Or possibly diagnosis-happy parents and docs (as we experienced with a lot of false ADD kids in the 90s and early 00s)? Genetic testing will be great to have and I certainly hope they get it down pat relatively soon.
10/05/09
I also think it's compounded by the fact that in our lifetimes we have to encounter so many more strangers and have more advanced social skills. I can see how an autistic child would just be kept at home 100 years ago and considered "funny" but without something "medically" wrong with him. It's the nature of modern society that any kind of unusual behavior must have a disease behind it and be dealt with accordingly.
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The spectrum means that people like me--a bit odd, a bit obsessive, socially inept--are autistic, along with people like my patients at work, who may be nonverbal and not completely toilet trained at 10, or 15.
10/05/09
I don't know nearly enough about autism to have an opinion on those questions, but they seem like potential reasons why thinking about autism with a spectrum model might give a lot of false positives. It is probably the best way to approach it - but it still may have this problem.
10/05/09
@Her Grace: I would be shocked if there weren't any people with Autism on Jez.
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That's a reason why this methodology is not a good one, but that defect would cause an underestimation of how many are affected, so it would not explain the increase, only point to this increase being even bigger.
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I mean they seem present this as a possible mistake that would cause the figures to be so high, when that it would cause them to be lower, not higher.
I know the post doesn't explicitly say that, but it seems to point in that direction, which is a wrong one.
10/05/09
But I don't believe that this is a new or epidemic phenomenon. Just that there is a wider and wider net for the diagnosis of folks who would never have been considered autistic when I was a kid.
I can easily name 5 people I knew growing up who I would consider to be candidates for the diagnosis. Probably more. And the ones I've kept track of are doing just fine as adults.
10/05/09
If these people represent one end of the spectrum, the numbers seem about right.
10/05/09
If someone displaying those symptoms is considered for the intent of this study to be autistic, then I can believe those stats.
10/05/09
The solid diagnoses (autism and Asperger's, which really is a legacy diagnosis and would be better fit in with autism itself) and the two other pervasive developmental conditions (Rett's and childhood disintegrative disorder) tend to stick.
10/05/09
I understand the problem of fear resulting from over-reporting of autism numbers. But I would rather some over-reporting if it means we can get more research into the condition.
10/05/09
Sucks that the actual study wasn't all that different. Why didn't they ask diagnosticians how many cases they see per year? That seems much less biased and an M.D. might have a better understanding of what constitutes autism or the autism spectrum.
Plus, they probably had actual paperwork/records/questionnaires on file to back up the data.
C'mon statisticians!
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I just think asking parents opens a can of worms because autism is kind of the popular self-diagnosis (or lay-diagnosis) for any kind of childhood awkwardness.
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Also, my mom is currently convinced my younger brother has Asperger's, despite his psychiatrist disagreeing with her, so I could see how just those two questions could get very unreliable results
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PDD-NOS, however, is totally subjective. It's a catch-all for the kids and adults who have some autistic traits but not enough to meet criteria (so this includes kids who are a bit socially off, a bit communicatively off, might be anything from severely impaired to incredibly mild).
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