Friday, December 22, 2006

On The Validity Of Self-Diagnoses

Via Brett I've learned of an article titled Study: Most Self-Diagnosed "Asperger's" Patients Just Assholes claiming to report on a study published in The Lancet, no less. After checking out the website where the article is posted, www.ridiculopathy.com, it's clear this is just one of their spoofs. Nevertheless, I think there's a reason why someone came up with the idea of making fun of self-identified adult autistics, and this is something that should be addressed and debated by our community.

It surely has to do with the fact that 30 years ago there was no one identified as having Asperger's, yet there is probably nothing biologically new about today's adults. I think most people would prefer to keep the ad-hoc labels of the past ("asshole" being one of them) as opposed to having to deal with (and perhaps even accept) the impairments and peculiarities of others. A similar theme was explored by the TV show House, where the main character was suspected of having Asperger's but was later characterized as having to face the fact that he was merely being a "jerk".

Much of the importance of the issue rests in the fact that opponents of autism self-advocacy attempt to use the existence of self identification to their advantage. Think Lenny Schafer. Never mind that undiagnosing someone over the internet is obviously less valid than any non-professional self-assessment.

The "explosion" in adult diagnoses and self-diagnoses of ASD certainly seems to parallel that of diagnoses in children. That is, they started to occur mostly in the 1990s, and really exploded in the late 90s. I first learned about Asperger's in 1998, which is roughly when the internet was experiencing a substantial boom. Doubts about the validity of ASD diagnostic labels are not restricted to adulthood, mind you, as evidenced by an article by one Katie Grant titled Some 'autistic' children aren't ill, they're just badly behaved (which was not a spoof, sadly).

Before I continue, I think a personal disclaimer is in order. I do have what I consider to be a diagnosis, given to me by my son's psychiatrist. It was a quick diagnosis and it's not in writing, mind you, but I don't really have use for anything beyond that. Plus I have an autistic son, a dad with clear autistic characteristics in early childhood, and my own childhood history which includes hyperlexia. There are many other relevant facts about my family and myself which I won't go into. So I have no doubt I'm autistic, and neither does my wife. My parents seem to be mostly accepting of the fact that I'm autistic at this point.

But in many cases a diagnosis of ASD, particularly a self-diagnosis, might leave room for doubt. The matter is complicated by the fact that there are no medical tests for ASD and it's unlikely there will ever be a simple, accurate test.

Whether self-diagnoses are valid or not is primarily a scientific question in my opinion. Intuitively, it seems to me people would be able to determine what they are most of the time. But while it would not make sense for people to be wrecklessly giving themselves false psychiatric labels (consider the potential impact on any employment, for example) error is always a possibility, as is hypochondria.

I'm aware that professionals warn against self-diagnoses of ASD. But is there a study which documents the inaccuracy of self-diagnoses of ASD specifically? Not that I know of. I think such warnings are based on educated hunches, nothing more.

While studies on the validity of self-diagnoses of ASD don't appear to exist, I wouldn't say nothing is known about them. Let's look at what I believe are the two most often used instruments involved in self-diagnosis.



The owner of the Aspie Quiz makes some relevant claims about that instrument. For example, that the test has been adjusted over time based on the performance of each question. And that self-diagnosed autistics, surprisingly, tend to score slightly higher than diagnosed autistics. Interesting as these claims are, it's important to note there are no published studies on the validity of the Aspie Quiz.

The AQ Test, on the other hand, has been studied on multiple occasions. For example, Woodbury-Smith et al. (2005) found the test to have good discriminative validity at a threshold of 26. What this means is that if you score 26 or lower in the AQ Test, it is very unlikely that you are autistic. This only tells us about the screening properties of the tool, not about its potential use as a diagnostic instrument. But let's look at Baron-Cohen et al. (2001) where 11 students scoring 32 or higher were interviewed. All of the 11 met 3 or more DSM-IV criteria and 7 of the 11 met "threshold" on these criteria. (I believe "threshold" means clinical significance). So it appears that the AQ Test has about 64% accuracy at a cut-off of 32.

I would conclude that if you score higher than about 33 in the AQ Test, you have the 3 major features of autism (impaired socialization, communication difficulties and obsessive interests/repetitive activities), and these cause problems in the areas of employment, education or social/family life, then there is little doubt you are autistic. This is just my opinion, which is that of a non-psychiatrist. Do I expect most psychiatrists to disagree with this conclusion? Of course.

22 comments:

  1. The supposedly humorous article said something like these were normal 20-something young adults who were rude and had no friends so they tried to excuse themselves by saying that they must have Asperger's.

    How could that ever happen? A jerk person wouldn't lower themselves into a worse social category in order to what??? buy social status? keep their job?

    Why would someone ever want to say they have Asperger's? I can't imagine it. In the real world, it's most likely that really diagnosed adults on the autism spectrum will hide their diagnoses.

    In the online community someone could just report that they were officially dx'd. Like Joseph, how hard would it be for you just to say you had a dx from 7 eminent psychiatrists all who said, "hands down you have AS." or maybe something less glowing. Who would know if you were lying.


    That's the thing about AS people they really, really don't like to lie. Another thing is the AS persons' strong desire to put himself in a category (never mind SBC and his systemizing for a minute, autistics do seem to like to categorize things).

    A far more likely scenario is you have an Asperger's person harassed by (jerk) NT's at work and trying to figure out why he can't keep a job from all the bullying, and then finding out he has AS and then hiding the official dx. Or a young person finding out that he or she has and ASD after his or her child is dx'd.

    There should be a boom in adult diagnoses, offical or unofficial, in the next few years. Hopefully, there will be some people with money willing to help fight for the rights of all autistics in that new bunch.

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  2. "Why would someone ever want to say they have Asperger's? "

    I meant why would someone ever want to say they have Asperger's if they didn't? A person can't fake the neurologically based reactions and movements that an autistic has, not for long anyway, as far as presenting oneself as being and Aspie/autistic to one's co-workers.

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  3. I contend that House is Aspie who developed the jerk thing to hide that he cares about what other people think about it, but I digress...

    Faking it ain't possible, as Ms Clark says. It's easier to blame it on ADHD or bipolar than on Asperger's, anyway, if you're a jerk. Those have stigma too, and the jerkometer for bipolar is HIGHER than for AS in the eye of the public (not saying this is right either, just that 'oh my meds aren't working' is a really HANDY excuse).

    Like I told my in denial mother, you CAN'T FAKE hearing things people don't normally hear, or NOT getting dizzy when most people do, et cetera. It's not the "personality", it's everything ELSE!

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  4. In my case, having the official documented DX was imperative in *allowing* me to continue working, because it got to the point where accomodations were no longer optional. When you can't pass, the issue of whether your social status will "survive" a diagnostic labeling isn't really an issue anymore.

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  5. if i get a dx, it will be for, or for fear of, the type of situation that Zilari describes. my husband is trying to get a dx in case he needs it for school... or work.

    i somewhat agree with Kassiane about House, obviously with the caveat that he's a fictional character and that will only turn out to be so if the authors let it.

    i remember desperately wanting to KNOW that i was AS when i first heard of it. this was an explanation, and a place to (FINALLY!) fit in. then i just settled into saying i was "borderline autistic" (i know, not an accurate phrase) if something came up that i needed to explain, but mainly i didn't think about it much and i just thought of it as a part of my life but not a big part... then some really awful department politics stuff happened at my previous job and i became more and more convinced that all the mistakes i made were typical aspie social mistakes. this is when i realized... this MATTERS, and i have to pay attention to it.

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  6. Because Asperger's and the other autism spectrum diagnostic categories are based on culturally dependent observations, not on solid scientific facts, a diagnosis cannot be accurate or inaccurate. There hasn't been enough research yet to demonstrate that any particular method of identifying a person as autistic is scientifically accurate. Indeed, the researchers don't even have a clear consensus on what autism is (the DSM-IV definition is ridiculously subjective).

    It's like describing a person as belonging to a particular racial or ethnic group. Yes, there are actual observable characteristics that arise from genetic similarities among the group's members, but what we're talking about is a culturally constructed sociological category, not a medical condition.

    The notion of "clinical significance" makes autism even less scientific than race because, as Joel pointed out recently, an autistic person who finds an environment better suited to his or her needs, and who can function very well in that environment, no longer appears to have any significant problems and magically becomes non-autistic by the psychologists' standards.

    As Zilari mentioned, whether a person gets an official diagnosis usually depends on whether the person needs the documentation to get services, keep a job, et cetera. Those issues are very much dependent on the person's environment.

    In my view, a person who self-identifies as autistic is asserting a cultural and ethnic identity. If someone claims to be autistic because he or she thinks it's a good excuse for being a jerk, then it's obvious that the person does not understand autistic culture. (I'd put a person like that in the same category as ignorant urban teenagers who think that being black is all about blasting rap music full of the N-word and disrespecting women.)

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  7. The issue if self-diagnosis is reliable or not is not easy to answer. In the first place, there is no biological markers for autism, and DSM really have some criteria that are dependent of environment. So the issue will depend on what autism is.

    In the case of Aspie-quiz, the self-diagnosed group consistently score higher than the professionally diagnosed group. This finding is based on thousands of responses in 7 different versions. However, the criteria for getting high score on Aspie-quiz is not based on DSM criteria. Aspie-quiz, at least in the most recent versions, uses factor-analysis of previous versions to calculate scores. It puts no concern for general functioning in society. This is specifically so because Aspie-quiz avoids using culturally and environmentally loaded questions as much as possible. Aspie-quiz is also much broader than DSM and AQ-test.

    The AQ test is less rigorous about using culturally and environmentally loaded questions, and thus might correlate better with DSM and give self-diagnosed lower scores on average.

    Still, the correlation between Aspie-quiz score and professional diagnosis is between .91 and .94. It is between .95 and .98 for self-diagnosed.

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  8. The other thing is, in many diagnoses, autistic abilities are measured. A non-autistic person will only rarely have these kind of abilities, and they can't be faked. (For instance block design.)

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  9. The fact that some of us feel we need to justify our calling ourselves autistic says something about the sad political state of autism. Gays don't need to get validation from a psychiatrist to call themselves gay. They just know what they are. I bet that was true even when Homosexuality was in the DSM-II. Sure, there are some differences, but still.

    I agree with Ms. Clark that erroneous self-diagnoses are probably much less common than people imagine. Leif's data is, again, interesting in that regard, but I don't think many people are going to take Leif seriously until he gets something formal published.

    And of course I agree with the comments about the subjectivity of the autism construct. I wrote a post about that.

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  10. About publishing Aspie-quiz, I will try this again once version 8 "expires". I've already sent it to three different journals, but none of them decided to send it on peer-review. I suppose there is great resistance for these ideas in the editorial boards of popular journals. It could also be that I cannot boost with any university-position. Although, I'll have to admit, I selected some very prestigous journals that only publish one article in ten. I'll be less picky next time.

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  11. BTW, there was an earlier discussion on the subject over at Ballastexistenz. And now Michelle Dawson has posted a commentary on the double-standards of self-diagnosis in the autism community, which probably have to do with the political opinions of the self-diagnosed or undiagnosed individuals.

    ReplyDelete
  12. Joseph;
    On the subject of Katie Grant and her foul article "Some 'autistic' children aren't ill, they're just badly behaved", I would like to point out that in the UK, ASD is very much 'underdiagnosed'. At the risk of being accused of having a "pity party" for some of my views, I nevertheless thought it would be relevant to post my very first comment as a blogger, (taken from Mike Stanton's blog.)

    This was/is a letter in response to Katie Grant's article:

    "Letter From Sickened Mother

    Dear Katie,
    Congratulations on your excellent and most poignant work of fiction! ‘Some autistic children aren’t ill, they’re just badly behaved’. Well done! You have convinced us all and proven without a doubt, it is blatantly obvious you know very little on the subject you irritatingly refer to as an illness.
    As the mother of a five year old son, diagnosed at the age of three with core autism, I am still coming to terms with this diagnosis, and the realisation of its life long implications for my son and my family as a whole. Every aspect of his daily life is profoundly affected by this condition, causing great distress and anxiety, and placing considerable limitations on our families’ quality of life.
    Months after reading your article, I am still reeling from your obvious cynicism, and venomous accusations aimed at parents of autistic children, you would have us believe, have managed to obtain a false diagnosis of ‘autism’ for spurious reasons such as: “an excuse for their child’s bad behaviour”, for monetary gain in order to claim DLA and carers allowance, and most ridiculously, to be trendy or fashionable. Hundreds of parents of severe or profoundly autistic children are being turned down for the level of DLA they rightfully deserve and need, facing appeals, intimidating tribunal appearances and the exhausting task of ‘gathering evidence’ to support their claim, when they could be spending this valuable time and energy on their children.
    Without reference to any research, statistics or professional opinion, you are like a bull in a china shop, launching into an unsupported endless onslaught of extreme, ill considered and offensive statements. To state that children “showered with isms,” who are doing badly at school, or are unable to communicate, is nine times out of ten due to “family breakdown, community paralysis and hopeless parenting” is absurd, and based on nothing more than your own dubious speculation. You should take your own advice and take great care before brandishing about, “this worst kind of inflammatory sensationalism”.
    My heart sank when I read your statement: “It must surely be the worst kind of damage to label your child with an ‘ism’.” You must understand that parents cannot and do not wish to label their child with an ‘ism’. When your child is labelled with an ‘ism’, they have been diagnosed with a very real and serious condition, needing early intervention, provision and help in enabling them to reach their full potential.
    Autism is not diagnosed lightly, as your article implies, and children are not being showered with ‘isms’. This is a fact. Anxious parents are placed on long waiting lists and left in limbo for up to three years, before a thorough and comprehensive assessment is done to establish whether or not their child meets the diagnostic criteria in order to ascertain a diagnosis of ASD. Parents are then often left with little or no support in gaining access to the services and provision their child is in dire and immediate need of, at the same time going through a grieving process for the child they had so many aspirations for and took for granted to be ‘normal’, who they have effectively lost.
    Children cannot ‘fake’ autism. Any parents you are suggesting would seek a diagnosis of autism for suspect reasons would not get past their GP or health visitor and a misdiagnosis of autism is highly unlikely. I am sickened by your cynicism and angered by your extreme views, and although you attempt to balance these views with expressions of empathy for “those parents whose children really are on the autistic spectrum”, I am not convinced.
    I believe you MUST be well aware of the negative impact your article will have on the public perception of autism, and that the damage you have caused to the plight of families struggling to cope with the demands of their autistic child, in the face of a system that is failing them, cannot be undone.
    In you follow up article, ‘Autism, we need a debate’, in defence of your views on autism you say you are “sorry for the pain, but not for raising the issue”. Yet you did far more than raise the issue of rising autism statistics. The weight of your article was focused on your intent to convince your readers, on a very personal and critical level, that the “autism epidemic” is due to such things as, hopeless parenting, family breakdown, and most controversial of all, your assumption as fact, that there are unscrupulous families who are able to obtain a diagnosis of autism for monetary gain, while you yourself are ‘profiting’ from autism, by being paid for airing your grossly inaccurate and damaging views!
    This is not a debate. This is your own callous and contemptuous opinion, aimed at discrediting families with a diagnosis of autism, who you have insulted and alienated, and it is this you should be deeply sorry for.
    It is a responsible and concerned parent who seeks out a reason why their child, at the age of two has not learned to say mammy or daddy, and it is an irresponsible and damaging individual who seeks to persuade the public that there are families who are able to exploit this serious condition for all it’s worth. By casting doubt over the validity of every diagnosis of autism, you have by default, undermined the motives and validity of every family whose child has a diagnosis of autism. Including those you concede to be ‘genuine’.
    You refer to your concerns regarding those families with “genuinely autistic” children, who would benefit greatly from ridding the system of opportunistic parents obtaining a false diagnosis of autism, and suggest that “families faced with autism every day,” would want nothing more than to have these people removed from “any list”. Wake up Katie! As a parent of a ‘genuinely autistic’ child, “faced with autism every day,” why would I have any interest in weeding out ‘fictitious families’ I do not believe exist? You are inciting a ‘witch hunt’, serving the system with an excuse to ‘crack down’ further on all DLA claims involving autism.
    Are you able to concede to the possibility that you may be guilty of an insidious form of discrimination, against a disability which cannot easily be recognised as such, but can express itself by resembling ‘bad behaviour’?
    It has not gone unnoticed, that in your article, ‘Previous convictions,’ where you talk about your experience of meeting and interviewing a man who had devoted his life to the “mentally handicapped,” Jean Vanier. You openly profess to your insuppressible feelings of nervousness, squeamishness and disconcertion towards the ‘mentally handicapped’. Ending your article, with reference to your ideas about perfection having been subtly altered, you state, “I still find mental handicap disconcerting but, after having met Vanier, I no longer wish it was not there”. I cannot help but speculate as to what your ‘previous convictions’ were, and ask myself why you should be trusted to be objective on the subject of autism, when you have such questionable disconcerting feelings towards the ‘mentally handicapped’.
    I am not surprised you have become something of a hate figure. I thank those people who are not prepared to concede to your offensive views, individuals who suggest they should not have been published, and lobby groups that call into question your motives for writing your article. Those who live with autism can only be helped by “shouting down” those with extremist views such as yours, that only serve to damage and distract from the call for a much needed debate on the rising autism statistics.
    I am afraid to say that your “desire to question the reliability of statistical analysis in Scotland,” has been completely over shadowed and distracted from by your sickening views and determined desire to undermine these statistics, at the cost of maligning thousands of families affected by autism.
    I call for another debate. The debate needed on how any newspaper can be allowed to publish your own brand of “pulpit thumping” propaganda on autism. Newspapers should not ‘hide behind’ their journalists, and the Sunday Times Scotland must be held ultimately responsible for the inevitable and irrevocable damage and distress evoked by your ‘article’.
    You have supplied the bullets, Ms Grant, and they have fired the gun. Straight into the hearts of every family affected by autism, and without any concession of a public apology and retraction of your article, you should hang your hard-boiled head in shame.

    Susan Lord"

    Are you aware that this woman is an author of childrens books.
    I wrote to her publishers - Puffin Books, but they weren't interested.
    Now I have discovered Puffin publishers have a contract with my son's SEN school, which has autism specific classes.
    The very people Katie Grant has criticized,undermined and discriminated against in her articles, are the same people she is exploiting, who are unwittingly lining her pockets by buying her books.
    How about joining together with some autism advocacy, by way of everyone writing to these publishers, and threatening to boycott their books until they withdraw sales of Katie Grants childrens novels?
    Let them feel the 'wrath' of the autistic community?

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  13. Jonsmum: I had seen your letter before. I agree that autism is probably under-diagnosed as opposed to over-diagnosed. About 2.7% of all children are high scorers in the ASSQ.

    Ms. Grant is clearly someone who sees autism from the POV of an outsider. She does not have an iota of evidence to back up her claim. She probably just saw an autistic child tantruming or something. Since autistic kids look physically unremarkable, she concluded the child must be normal but badly behaved. It is true that some autistic kids who appear closer to typical are getting diagnosed today, but this doesn't mean they aren't autistic. It just means that autistic traits distribute in the general population, and the diagnostic cut-off must be drawn somewhere.

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  14. Joseph;

    "It is true that some autistic kids who appear closer to typical are getting diagnosed today, but this doesn't mean they aren't autistic. It just means that autistic traits distribute in the general population, and the diagnostic cut-off must be drawn somewhere."

    I agree!

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  15. I want to thank you for critiquing the "Assholes" article, as it had jarred me when I first saw it. I had just recently concluded I did not need a diagnosis--and was feeling comfortable with it.

    That article, admittedly satire, brought it all back up again.

    While I suppose it is funny on one level, I'm happy to see that everyone doesn't just give it a pass.

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  16. heres a reason why a person would want to diagnosis themselves with auspergers; I have a friend who IS auspergers diagnosed by a licensed psychiatrist. Because he is my friend and I value our friendship I am striving to better understand behaviors specific to auspergers autism. So.. recently I attended a so called autism support group. My friend, Dave, and I really want to help to educate our community as to special needs autistic people may have when out and about in public places. (because of the tremendous amount of times Dave is misunderstood and it has caused problem after problem for him). Anyhow we attended this group only to find this was not a support group by any definition or experience I have ever understood. And I have attended many support groups as I have a Bachelors degree in the Science of Nursing. So I have attended support groups both on a personal and professional level. This was the first odd thing we encountered at this group. These are some of the other oddities, there was no one that seemed to be in charge of the meeting, the only person who actually had a professional diagnosis of autism was my friend Dave (all the others had children with autism who weren't at the meeting), there was no sharing about experiences and we felt out of place because Dave has autism. The only thing discussed at this meeting was funding. By that I mean talk of the fund raisers this group puts on in order to supply grants (available to any family or person with autism) to be used by family or persons for expenses they might incure while traveling to the support group. Or if a person wanted to go...lets say to the florida conference, one could apply for a grant to pay for it. Wow, a support group that pays fro a vacation ( I mean in reality thats what it is isn't it?) . But what we found most disturbing is that there is a women in the group who outwardly proclaims her auspergers autism and lets it be known she is self diagnosed. Ok, now the problem here is this particular women receives a lot of money from this support group but hasn't been diagnosed by a professional qualified to make this diagnosis. Now the only criteria for receiving a grant is the person receiving it must have autism or have a family member (such as a son or daughter) who has been diagnosed. So here we have a women who as far as I have been able to see exhibits no signs of autism. So our first thoughts obviously are that someone is scamming not only this group but our community. This is not ok, and is highly upsetting. So we went to a second meeting. After this meeting my friend was asked not to attend any fund rasiers ( a golf tournament is comming up) until he attends a few more support groups. He was not allowed to speak at this group. In fact the only person who was heard (for 36 mins then the meeting was over) was the self diagnosed women. This isn't like any support group I've ever been to. Does this sound strange to anyone else besides us? Because when we bring this up to board members (of this group) they act like we're really out of line for thinking this way. ?? I just don't get it. But anyhow this is a possible reason why a person might want to self diagnosis themself with autism. Thanks for reading this and I welcome all comments as I'm not sure what to do about this whole issue.

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  17. Anon: I don't doubt that there could be people out there who use the fad of autism to take advantage of the system. Then again, it's possible the woman in question is autistic, and for some legitimate reason doesn't have a diagnosis.

    In cases where you don't need any sort of assistance, as is my case at the moment, getting official papers is probably not necessary. If money is involved, I'm inclined to say they should be.

    From what you say, it appears you stumbled upon a parent's support group. Yeah, I can see how that would be unhelpful. Strange that there would be a woman with Asperger's there, though.

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  18. I also want to say thanks for the rebuttal to "Assholes." The fact that this comes up #1 on a Google search for "Asperger's self-diagnosed" perpetuates an attitude that unfortunately is very real. Those of us who know better have a responsibility to make our voices heard.

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  19. Look, let's be honest. There IS an epidemic of misdiagnosing autism. Autism is a spectrum, not a black hole, where you throw everyone from ADHD with selective mutism and OCD with autistic features to schizophrenia and MPD inside the hole. There are kids who are mentally ill, bless their little souls..but who are NOT autistic, being diagnosed autistic daily. Likwise, kids with severe allergies or gastrointestinal disorders that cause so much pain the retreat.....but they later recover when they get medical treatment...genuine autism is forever....you can improve, but you are never cured or you did NOT have autism..Kaufman is a new age fraud, much like Jenny Mccarthy..if you look closely you will see they all dance to the same tune...new age thinking...the Kaufmans's are incredible people, no doubt, they worked hard with their kid,,but he was clearly never autistic....he had mental problems..and McCarthy's kid had seizures that set him back and was then mislabeled autistic by some idiotic neurologist who probably was staring at Jenny's boobies and forgot what autism was.

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  20. Another thing: autism has become a very lucrative industry...don't ever fool yourself into thinking people aren't diagnosing this because it somehow benefits them, or others....this is real problem. So is research that fraudulently portrays autistic people in their studies who aren't autistic..but they include them to show slight results (just enough to keep the grant money flowing....) Also, schools get extra funding for autism..so do communities..it's all a big scam..sadly the truly autistic are being pushed down and trampled over...as these "recovered" and "cured' stories suck in a gullible and vastly ignorant media. What ever happened to investigative journalism? Where are the journalists who will uncover these FRAUDULENT stories like Jenny McCarthy's autism recovery...isn't anyone thinking anymore? THERE HAS TO BE SOMEONE WHO WILL EXPOSE THE AUTISM SCAM GOING DOWN HERE

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  21. @Anon: Your arguments are not only speculative and unsupported, they are conspiracist. You're suggesting that in many different studies done in many parts around the world, where they find a 1% prevalence, the researchers are pretending to diagnose autism at this rate, when in fact "genuine" autism is much more rare.

    Here's a hint: There's no such thing as "genuine" autism. There's no way to measure such a construct, and there never was.

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