Are there more people with autism, or more people diagnosed with autism?

Discuss

90 Responses to “Are there more people with autism, or more people diagnosed with autism?”

  1. nixiebunny says:

    The autism spectrum has gotten a lot more attention lately, since there’s now a specific diagnosis of this brain type. 50 years ago, people weren’t diagnosed with Asperger’s syndrome, they were just called eccentric.

    • Guest says:

      ….if they had money.  Otherwise they were called schizo.

      • infinitejones says:

        My dad works in a residential school for autistic teens, and says that he remembers boys he was at school with 50 years ago who were clearly autistic. (Or would be diagnosed autistic today, if you want to look at it that way). Back then they were just dismissed as badly behaved or stupid, and he shudders to think what became of them back then.

    • digi_owl says:

      or lazy underachievers. That is the nasty part about being aspie before it become a diagnoisis, you did not know if the problem was you or them messing with your head for cheap laughs. Kids are damn cruel like that, as they will not correct or try to explain. They will just keep trying to trigger your problem for cheap laughs.

  2. Antinous / Moderator says:

    My best-friend-from-the-fifth-grade’s husband was diagnosed with Asperger about five years ago.  When he was in his late fifties.  It’s not like he suddenly developed it.

  3. Nadreck says:

    Well, knowing that there are other people such as yourself and (finally after decades of screaming at people) getting those few people who believe in something other that “lack of character” being a possible cause of behavioural differences is nice’n all.  Doesn’t do you any good though.

    I knew all about Asperger’s Syndrome and it’s relationship to Autism back in the 80s.  I even used to tote around some of Dr. Lorna Wing’s work on the subject in case it came up.  All it meant was that a session with a psychologist or any such ended up with me educating them and then them admitting that they hadn’t  a clue how to deal with such a mentality.  Now, thirty years later, it still doesn’t matter as *ALL* services and academic work on the subject deal solely and exclusively with children and childish concerns.   Even Dr. Asperger’s and Dr. Kanner’s original works dealt only with children.  On your 19th birthday all funding dries up and, in a puff of magic smoke, you are deemed not to need any help with any aspect of your life.

    A big part of the problem is that as an adult you’re assertive and articulate enough to point out that most of what they peddle to the children and their parents is unadulterated bullshit.

    • jackie31337 says:

      I’ve had similar difficulties getting diagnosed as an adult: Asperger’s Syndrome is viewed as a childhood disorder in Finland.

  4. sam1148 says:

    I seriously doubt some of the diagnosis. My brother’s child is 2 years old and a twin.
    He hasn’t started speaking yet, and was automatically said to autistic.
    However, the kid makes eye-contract and looks to people and interacts with people—he just doesn’t speak yet; except to his sister in ‘twin’ type language.
    He likes people and looks to them and does a great eye contact for humans and more interested in people than toys and inanimate things.

    • elix says:

      I think autism is the new catch-all now that ADHD is less of a fad and Ritalin is not seen as the wunderdrug to cure all your shitty parenting skills.

      Kid a little strange? Autism. Not fitting in perfectly with the development pattern in his age group? Autism.

      • Snig says:

        No.  Have known dozens and dozens of scientists, gamers and other folks who didn’t fit in and were more than a little strange.  Now that I’ve a kid with autism, I know dozens of kids with autism.    There’s a big difference.

        Nobody I knew fought or asked for an autism diagnosis, most parents hoped it was some diagnosis besides that.  Self included.  “Doctor shopping” is usually for a doc who will tell you your kid doesn’t have autism, as that’s something most of us didn’t want to hear. 

          Kids with ADHD are quite different as well, though some with autism also have ADHD.  Also know decent parents with typical kids with excellent social skills as well as nonverbal siblings.  They don’t seem to be shittier parents to the kids with autism.  Doubtless we just need your armchair parenting advice to be less shitty.  Enlighten us.

        • elix says:

          Wow, your sarcasm/facetiousness meter is seriously broken.

          I would like to point out a) don’t take me TOO seriously, b) I don’t believe that all cases of autism are misdiagnosed, or that all ADHD kids are just raised improperly and fed Ritalin to keep them out of trouble. And c) I don’t believe that ADHD and autism are somehow equivalent.

          My point is, when I was growing up, ADD/ADHD (yes, they are distinct, I know) was not a common piece of vocabulary. By the turn of the century, doctors began diagnosing it routinely, so much so that you’d think the idea was just to see how many kids they could see in one day. Never mind accurately determining the real problem with the kid, they fit enough indicators in this overly-broad range of mental behaviours, they’re ADHD, here’s a bucket of Ritalin to make them stop misbehaving at school.

          Not all parents were just going to go along with the doc and blame the kid, but enough ill-informed parents were out there to make it a sort of black-comedy meme. I could lay down some anecdotes of the Ritalin-prescribed kids I knew who had shitty parents who just blamed everything on their supposed ADHD diagnosis (when really the initial diagnosis was prompted by a mild learning disability paired with a poor teacher who bored the kids and then blamed them when they acted up instead of quietly letting their brains atrophy), but they’re simply anecdotes.

          Autism awareness is seeming to have the same feedback loop on diagnosis (by lazy/greedy/incompetent doctors) as ADHD did about a decade or so ago.

          I wasn’t endorsing this attitude; nobody wants to hear that their kid is autistic. Especially if it’s because the doctor’s got preconceived notions of what your kid’s case is and won’t reconsider.

          I actually suspect that I might fall somewhere on the autism spectrum, more close to the high-functioning end. But I’ve never bothered to go get any sort of diagnosis or analysis because it doesn’t qualitatively change my life in any way–it’d just give me a label to use as an excuse for my introversion and bouts of social malaise and asocial moods. If I was a kid and someone figured out what made me that far away from ‘normal’ and worked out effective therapy to smooth out the quirks, maybe, but it’s too late now, I just need to make the best of it and fit in as best as I can.

          • Snig says:

            Your comments were both offensively sarcastic and facetious, yes. Lack of apology noted.
             
            If I had a nickel for every “oh don’t be offended by my incredibly offensive snap judgement on parents of kids with autism, I’m probably a little autistic myself”, I wouldn’t have to worry about the financial costs of taking care of the kid.   Being an introvert is also not quite the same as having autism.  If a doctor misdiagnoses a kid with autism, the doctor doesn’t profit and he also risks a malpractice suit.  There’s not money to be made giving your child an autism diagnosis, on the parental or the doctors side.  This article seems to start with that premise, and finds folks to agree with it.  Not my experience.
             
            The condition is real.  It doesn’t deserve derision.  It’s not the same as ADHD or being an introvert, comparisons are odious.
             

          • Jim Nelson says:

            And your reaction is exactly why we need to identify children with high-functioning autism and work with them on empathy, and playing well with others. Because you’re being obnoxious, and arrogant. And seem to have no idea that you are being that way.

            My mother actually pointed out to me that I had Asperger’s – when I was an adult. She had spent a long time working with me on my social skills, to the point that most professionals in the field don’t realize that I’m autistic when I have my “public face” on. It takes a lot of time, a lot of work, and a lot of patience to teach social interaction to autistic children, and it’s a lot easier when they’re young.

            Autism is a distinct disorder – it’s just that we’re finally recognizing the cases that aren’t as severe as the non-verbal state…

        • digi_owl says:

          I thjnk part of the autism stigma comes from its broadness. It reaches all the way from Aspergers (labeled as such as it lacks some of the “typical” traits of autism) all the way to the non-verbal, short tempered obsessive sorters. I think most of the diagnosis these days is more towards the Aspergers end then the “classical” autism.

          Btw, i get a feeling that as life becomes more automated the tasks normally found for aspies in the past are taken away. This then puts the focus on social tasks, something that aspies fail at unless very specifically trained. And even when trained, social situations will be exausting for the aspie.

        • Rks1157 says:

          Before I retired I spent the last six years of my career working with California’s Regional Centers for the Developmentally Delayed.  The centers provide services to children (and families by providing respite care) through funding by the state set up by the Lanterman Act and federal supplements.  There are regional centers throughout the state from the remote northern California/Oregon border to Southern San Diego.  

          To become a client, the child must be diagnosed as having delays in development as a result of Cerebral Palsy, Autism Spectrum Disorder , Mental Retardation (mild to profound) or non specific Global or Pervasive Developmental Delays.  ADD or ADHD in and of themselves are not qualifying conditions for services.

          I spent the greater part of each day on the phone with parents or caregivers and their caseworkers.   Occasionally I was invited to attend or conduct in service sessions at the centers local to me.  I cultivated the attitude that each of the kids on my caseload was one of my own.  Doing do made me work harder and smarter. With a caseload sometimes hovering near 200, I had a lot of kids!

          The over diagnosis question of autism was something frequently discussed.  Current statistics are one out of every one hundred and twenty kids are diagnosed with autism.  My kids came from every socioeconomic background, every race and every location on the map.  The ratio, seemed to flesh out in small towns as well as the metropolitan areas of Los Angeles or San Francisco.  

          None of the parents wanted their kids to be diagnosed with Autism. It isn’t a catch-all bucket.  It has nothing to do with parenting skills.  We hesitated to use the word diagnosis because these kids aren’t sick.

          There has been much talk by parents about childhood vaccinations leading to the uptick in diagnosis but to date there is no hard evidence to link the two.   

          Having been on the firing line with these families I can say that without doubt Autism is on the rise.  It is not just a word to describe a developmental delay.  Most of the kids on my caseload were warm and loving and extremely frustrated with their communication deficits.   The parents of these kids showed a capacity for caring beyond what I have seen in non-involved families.  It was a privilege to work for them.

      • sam1148 says:

        He is speaking…but only for learning to count. Anything else he does ‘twin talk’ to his sister and she translates (which is admittedly kind of strange) Numbers he’s good…which is kinda disheartening to his parents..as his first words were 1, 2, 3. Instead of Mom and Pop. 

        IMHO..I think his language problems are related to his twin sister, and their personal language they use, so he uses that ‘baby speak’ to her..and she translates; which is very interesting to see in action.

        I think this is a unique child here, and shouldn’t be shuffled off to disability land, as Autism.

        • elix says:

          I’m not a doctor so I’d never presume to try and predict what is ‘wrong’ (there’s a loaded term right there, even) with your nephew. However, I imagine that there’s plenty that your family will be able to do as he grows a bit older and develops. If you folks are resourceful, I’m sure there are many activities and other things that you could come up with to encourage him to develop his verbal skills.

          The sibling-speak phenomenon is a neat one, but I’ve never heard of it being the “first” and partially primary language of a twin (at least in early childhood and barring severe trauma or whatnot), so that’s kind of neat.

          I’d definitely be unsatisfied with an autism diagnosis for him, so good on you guys.

          The only thing I can think of, and I’m sure you’ve probably already thought of it is, wean him off his translator and encourage him to speak directly, and discourage his sister from (here go these loaded terms again) enabling him to continue on the way. This’s probably more feasible as they get a little older and they get a better understanding of rules and so on. But again, I’m not a medical professional of any sort so your mileage may vary.

    • asuffield says:

      In a child of this age, it’s not a conclusive diagnosis, but rather an observation that the early warning signs are present and hence parents and healthcare professionals should pay close attention. This is beneficial.

  5. Palomino says:

    Actually, the problem is how the African American male is said to be more at risk, a lot more, than the rest of the so called 1 out of 100. I’ve heard recent numbers within my black community as high as 1 in 5; wouldn’t that be an epidemic?

    I wrote a short story about this. It’s actually a detachment disorder, it gets so bad in the future, woman can’t even take care of their children, they aren’t emotionally aware of them.

    Aren’t we all autistic when we engage heavily in the internet? Multiple senses aren’t engaged in this format, most of it’s in our own mind. It’s our nature to fill in the blanks, perception is required. If the senses aren’t used to satisfy our perceptive curiosity, we make shit up; a fantasy world. Normal people live in the real world and choose to enter a fantasy world. With true autism, their fantasy world is their primary, that’s where their relationships are.

    • Autism isn’t about living in a fantasy world, it’s about perceiving the world different than “normal” people. The sensory input is the same, the way the brain processes is different. It’s not fantasy world, it is watching it through an other view. People with a Autism Spectrum Disorder (Autism, Aspergers, PDD-NOS and more) have trouble making sense of the world happening around them and to discriminate between possible important stimuli. And interhuman interaction is one of the hardest things in that. 

      This is a bit simplified (and I’m non-native speaking, so looking for words), cause it is just a complicated matter.

      @boingboing-35598cfdc8dfc57bfc329c04dfea84a8:disqus officially he cant be clinically diagnosed, a child can’t be tested before the age of 3.

      In my opinion (and experience working with mentally handicapt people wit ASD) the only way to get a good idea what it entails is to follow someone with ASD around for a while, watch him/her interact with the world. 

      • Marja Erwin says:

        Yes and no.

        It’s a different way of looking at the world, especially of looking at social interactions.

        It’s not a disorder, and we need to push back against the way differences are classified as diseases.

        I mean, extreme cases of autism may be a disorder, but extreme cases of neurotypicality too, instead of every variation from neurotypicality being tarred as a disorder.

        This whole society, and its social norms, especially for social interactions, are built around the idea that everyone is, or should be, neurotypical, and that’s what places autistic people and other non-neurotypical people in so many binds. Classifying differences as diseases makes it easy to take these norms for granted. Respecting differences can help us find norms that work for more people.

        • tlwest says:

          It’s not a disorder, and we need to push back against the way differences are classified as diseases.

          Personally having a number of autistic traits, and two sons diagnosed with high-functioning autism, I’d call it a disorder in that it consists of certain is a lack of certain abilities or instincts found in the neuro-typical.  For the high-functioning, it’s vastly less debilitating than missing a sense or a limb, but I cannot see how it’s not a deficit, even if one that can be overcome with some work.

          My personal experience is that for the high-functioning, it’s mostly a matter of learning what others recognize by instinct.  This is, of course, a lot more work (which is why many ASD-diagnosed need alone time), but in my experience, it can also be a lot more accurate.  Several of my family have learned to read subtle clues in facial expressions, body language and word-choice far more accurately than those who have always operated by instinct and have never worked to hone the skill.

          • Marja Erwin says:

            “Several of my family have learned to read subtle clues in facial expressions, body language and word-choice far more accurately than those who have always operated by instinct and have never worked to hone the skill.”

            I never learned these things, but I’ve always had to cope with people *misreading* my facial expressions, voice, body language, etc. I don’t know if I’m Aspie, but in my experience, I find it easier to communicate with Aspies than with most neurotypicals; I don’t see an inability, I see a way of communicating that makes sense.

            I imagine if a [high-functioning] neurotypical individual found herself in a [hf] autistic world, she would face the same problems communicating, and recognizing autistic ways of communicating, as a [hf] autistic individual faces in this [hf] neurotypical world.

          • tlwest says:

            [In reply to Marja's comment]

            I don’t see an inability, I see a way of communicating that makes sense.

            Agreed, sort-of.  English is a way of communicating that makes sense to me, however, if I live in Hungary, it’s a disability that I don’t speak Hungarian, and the locals are going to get annoyed I don’t speak to them, unless they realize I *can’t*.

            As for Aspie communicating with Aspie, I am curious whether there are other communication channels used that the NT normally don’t use.  The only thing I’ve found is (1) since there’s less reliance on non-verbal information, there are fewer misunderstandings brought about by misreading facial/body language and (2) there tends to be a somewhat higher precision in the language that is used.  Being pedantic finally comes in useful!

            Still, when in Rome…, and when living among the neuro-typicals, it’s highly advised to make the effort to understand exactly how they work.  However, it is a lot of work on his part.

            It was interesting teaching my oldest at a young age about how humans work.  Explaining status hierarchies to a 10 year-old so he could understand why his friend lied about having a video-game system was a challenge, especially since he could only barely conceive of the concept of lying itself.  (It was only in grade 5 that he finally figured it out and by that time understood there was advantage to having a reputation for never lying.)

    • RJ says:

      @boingboing-82164bffe4ccc2dbd0163c9486f9e62a:disqus

      it gets so bad in the future, woman can’t even take care of their children, they aren’t emotionally aware of them.

      Being emotionally detached from one’s offspring is already a fairly common problem, these days. It’s considered a form of parental rejection.

      • Perry Trice says:

        Emotional detachement and autism spectrum disorder have been proven to be mutually exclusive since the 1960′s. Emotional detachment is no more the cause of autism then vomiting is the cause of the flu. Lets not rehash old myths please.

    • Ann Nunnally says:

      As someone who has worked with children with autism on a regular basis, I am not sure that you truly understand what it is. The majority of those with autism are not geeky people who live in a fantasy world. Their brains are damaged and they find it difficult to relate to the outside world in many ways.  Their ability to use language and organize their thoughts are most often affected.  They require a significant amount of therapy and still may not be able to live on their own.  One of the myths of autism is that they are incapable of caring about others. They care very much about their families and close friends; however, their expressions of affection are not conventional.

      The detachment caused by mothers has been dis-proven many years ago and is an especially disturbing myth.  Autism is a disorder with an unknown cause but the symptoms are physical brain damage that cause difficulties in many areas of someone’s life. It is in no way mystical!

  6. InsertFingerHere says:

    Imagine what healthcare benefits will cost when everyone and their dog starts geting diagnosed with some vaguely-understood ‘disorder’ ! 

    On the other hand, I’m pretty sure if Autism was around in the mid-70′s, that would have been the easy label to stick on me.  I was sent to a shrink who did nothing more than let me draw while he made phone calls.  Did a test with a fancy helmet & wires…  guess my voltage was OK, no ripple.  

    Had my own experiences growing up, just like everyone does, good & bad (mostly good), certainly not the most social person, been laid a few times, own my house & zero debt, will continue to make a reasonable living for the forseeable future.

    Aside from wanting more sex, life is good for an Adult (insert yet-to-be-diagnosed mental disorder) sufferer.

  7. Ellis says:

    I have aspergers, but it is only now being diagnosed. I’m 41 and female, and European, which means that aspergers became known here even later.
    The consequences of this are severe. I was bullied in school, and told I deserved this because I was not nice enough. I was told I was as smart as everyone else, and therefore my lack of social skills were due to just not trying hard enough.
    So I tried harder. I suffered increasingly severe depressions, and made a poor (sales job) career choice, which made my problems worse. I never had a relationship, and I have no friends. I spent 40 years believing that if I just tried harder, I would learn how to do this and everything would be just fine.
    I ended up a self-hating nervous wreck in a mental ward after several suicide attempts. I do not work any more, and it breaks my heart.
    But, I finally got my diagnosis and now that I know what’s going on, I hope I can salvage at least something of my life. But it’s too late, it’s 35 years too late.

    I assume there are many like me, people with good intelligence who could have done well in life with a little insight and support, but who instead ended up on the sideline of society because of destructive coping mechanisms.

    • Scurra says:

      Nothing like as extreme here, but I can relate very much to this story.
      It’s taken 40 years for me (and the people around me) to properly recognise that the issues I was having were not because I needed to “pull myself together” but because of a different way of seeing the world.

      I am actually a little happier to know that there is now a clear recognition of a spectrum in this – and the beginnings of a wider understanding that, just like with e.g. sexual orientation, there is no “right” or “normal” place to be, just different places.  And that none of them are necessarily better or worse than others, but that all of them need proper support structures to try and make them positive rather than negative experiences.

      • Antinous / Moderator says:

        I was diagnosed in my late 40s with a rare, congenital connective tissue disorder. I’ve spent my life being told to stand up straight and that I’m lazy and malingering. As much of a drag as it seems to get a diagnosis, it’s a hell of a lot better than being constantly told that the way that you get through your daily existence is a moral failing.

        • Mordicai says:

          I had a friend have something similar happen to him; “Oh, yeah, you’ve got some seriously weird stuff going on with your spine.  So I guess that probably has had some serious social repercussions.  Oh well!”

      • Marja Erwin says:

        “I am actually a little happier to know that there is now a clear recognition of a spectrum in this – and the beginnings of a wider understanding that, just like with e.g. sexual orientation, there is no “right” or “normal” place to be, just different places.”

        Well, as long as people continue viewing autism, and other variations, as “disorders,” too many continue suggesting that neurotypicality is the only “right” or “normal” place to be.

        All too often people write stuff about “curing” the “disease” and that blinds them to *discrimination* against what’s most often *healthy variation.*

        • tlwest says:

          Given how human beings are *always* going to find the non-familiar somewhat disconcerting, I don’t think that labeling ASD a disorder is necessarily a bad thing. 

          The main thing it gets across is that the behaviors that people find rude, annoying, or non-empathic are NOT voluntary, where they would be considered deliberately anti-social in a neuro-typical individual.

          Calling it just another life outlook suggests that we have deliberately chosen an anti-social outlook and should suffer the consequences of that choice. 

          Certainly my son’s teachers were much more accepting of the challenges he posed for them once he had the diagnosis, although they were *amazingly* patient before.

    • Hollow says:

      You describe me, maybe I should go and see if I have it too…

      • Ellis says:

        I would recommend this if you are anything like me, but I have found it very difficult to get a diagnosis because of long waiting lists. It’s not too late to make a new start.

      • asuffield says:

        If you want a sniff test… this is not diagnostic, nor is it completely accurate. But at the same time it is remarkably accurate – if you score highly then you should probably talk to a psychiatrist.

        http://www.wired.com/wired/archive/9.12/aqtest.html

        • aeon says:

          That’s Baron-Cohen’s Autistic Quotient test. I score waaay high on that (if I’m honest) and ‘teenage me’ would certainly be diagnosed as having Asperger’s Syndrome if he was here now instead of middle-aged me. But instead I got to realise for myself how it is that I’m a bit broken, during a lecture on Autistic Spectrum disorders at medical school as a young adult. Which was a bit of a blow… But I’m still not going to be talking to a psychiatrist, despite having gone through the usual outlier’s childhood of being the bullied, freaky odd one out.

          Although Asperger’s means a failure of the cognitive aspect of empathy — the ability to automatically model others mental state and tune into it, the affective aspect is unaffected i.e. the emotional aspect of empathy is still there. It just doesn’t kick in at the same time as for most people — often just a bit too late to be completely helpful. But the point is though, that with realisation  (or diagnosis) that there is a problem can come the ability to change yourself (or train your kids). 

          I’ve found that with practise and reading up on body language, linguistics and verbal and non-verbal/behavioural cues that I can consciously model others state of mind/emotions to a reasonable degree— even to the extent that I’m actually better at it in some circumstances than those who have innate ability. I’m never going to be the life and soul of a party, but I am better than functional. The downside is that I have to be consciously observing and modelling to be able to have that cognitive aspect of empathy to a socially acceptable degree. Although it tends to fail if I’m very tired, busy or angry, the failures get less frequent with age and practise.

          Now maybe that just works for me because I chose a career that forces you into developing at least rudimentary interpersonal skills, (at least in that work environment) and was lucky enough to make the cut based on grades rather than on interview. But the fact that I can cope with a career which requires good communication skills does show that it can be done and that sufficient social skills can be learnt. 

          I can’t speak for anywhere else on the Autistic spectrum, but Aspergers doesn’t have to mean completely broken and does have advantages. I find the logical mindset and systematising skills that an Aspergers brain give me are a gift and wouldn’t wish to be without them. And they can substitute to an extent for what I lack innately.

    • digi_owl says:

      I know that experience. Was fast tracked towards aspergers when a child psychologist that had shelved my case when i turned 18, got an incentive to re-investigate my case. Before that i had been in and out of various screenings and whatsnot from the 80s onwards. Now i am en-route to a permanent disability case, even tho i probably have the smarts to get a higher education. Only problem is, i nearly get a physical reaction just considering school life 20 years after i had anything to do with it.

      • Antinous / Moderator says:

        Only problem is, i nearly get a physical reaction just considering school life 20 years after i had anything to do with it.

        School’s different when you’re an adult. You realize that you’re the customer. And the teacher is often younger and smaller than you. It gives you a very different perspective on the student-teacher relationship.

        • digi_owl says:

          It was more student-student relationship i balked at than student-teacher.

          • Anna Sitnyakowsky says:

            That, too becomes different. It doesn’t matter whether you’re in college with 18 year olds or people of your own age, if you pick a serious subject, they’ll most likely be serious about it as well (or fail). Subjects like Philosophy are excellent for this, and you’d probably be good at it. You could try taking a single course to see how it works out.

            I had a horrible time my entire primary and secondary education, but university was different, because the people in your class made a *choice* to be there. It costs them a lot of money and effort, and they (hopefully) chose a subject which interests them, which means you automatically have something in common, so that even if you’re completely different, you can talk to each other about the course.

            If you would like to get a higher education, don’t hold yourself back because of bad things that happened earlier. Instead, protect yourself by easing into it and be proud of the choice you’ve made to get more out of life, and not let others hold you back.

  8. I’m a parent to kids with ADHD and Autism.  I didn’t know shit about Autism beyond the movie Rain Man.  I didn’t know the signs and syptoms of ADHD beyond hyper.  I took parenting classes because I thought maybe I was a shitty parent because of the way my kids were acting, because of the looks ignorant people would give me. 
    It took years of being ostracised from everyone before we found out what was going on.  My kids were finally diagnosed and treated.  My ADHD daughter is now her teacher’s pet and loves herself instead of crying everyday and saying I’m stupid”.  My son with Autism can speak, use a toliet, and make it through the school day with minimal “incidents” with the help of his aid.  Did I mention that he is the SMARTEST kid in the class with the highest test scores? 
     
    ADHD isn’t a “fad” and neither is Autism.  The things that these families and children go through are real.  I know people can post whatever they want and obviously they do.  It’s fun to read posts from judgemental people don’t know what they are talking about.  
     
    Opinions are like assholes, everybody has one.

  9. kenfine says:

    I have Asperger syndrome, which is believed to be a mild form of autism. Asperger sufferers often have an intense interest in ‘specialist’ subjects. For many years, my own specialist subject has been the study of the causes of non-communicable diseases, including autism. It’s undoubtedly true that much of the rise in autism diagnoses is due to greater awareness of the condition, broadening diagnostic criteria and sociological factors. However, I became convinced that an environmental factor must also be contributing to the ‘epidemic’. There is little information on the subject of pre-natal exposure to chemicals being associated with an increased incidence of autism, but a search of PubMed produced some very interesting findings. Only two drugs are known to be associated with an increased incidence of autism when taken during pregnancy. These are valproic acid and, significantly, thalidomide. The therapeutic action of both drugs is at the GABA(A) receptor, where they bind as agonists (activating). Environmental chemicals which have been associated with an increased incidence are organophosphate, organochlorine and pyrethroid insecticides, phthalates and methyl mercury. All are known to be antagonists (inhibitors) of the GABA(A) receptor. Another chemical which is known to bind to the GABA(A) receptor as an antagonist is folic acid. Some women take as much as 800ug of folic acid as a daily supplement during pregnancy. This is several times the RDA for the natural vitamin, folate. Folic acid is an unnatural substance which is converted to folate in the body and it binds to the GABA(A) receptor more strongly than folate. It is epileptogenic at high doses. A high proportion of people with autism also suffer from epilepsy. A high incidence of folate receptor blocking antibodies is seen in autism and there is also evidence of polymorphisms of folic acid metabolising enzymes. There is also evidence of GABAergic Purkinje cell loss, suggestive of immune system cell suicide (apoptosis), and of reduced numbers of GABA(A) receptors on other neurons. GABA has a crucial role in early brain development. The conclusion of this research is that autism is being caused by an aberrant immune reaction caused by a combination of genetic predisposition and pre-natal exposure to environmental chemicals which bind to the GABA(A) receptor, disrupting its functioning. I believe folic acid may be the most significant chemical. A fuller explanation can be seen on my blog at http://www.nfkbdiseases.wordpress.com This derives from my main blog on the pathogenesis of non-communicable diseases at http://imdtheory.blogspot.com

  10. kenfine says:

    Sorry about the lack of paragraphs in the above post. I wrote it with paragraphs, but there seems to have been a glitch.

  11. geolith says:

    Latest example of one side benefit of the Internet:  it provides an endless stream of convenient opportunities to study the myriad ways we filter incomplete information through our attributional biases to come to incomplete understanding, and then wield those conclusions with certitude in social discourse.

  12. Snig says:

    I don’t think it’s that good an article.  I don’t think it’s typical for a parent to starve their kids before assessments in order to get a more severe assessment.  I don’t believe doctors commonly intentionally misdiagnose kids to get more services.  Having those anecdotes in the story makes people believe this is a made up problem.  The kid with an autism diagnosis who got services and was better in two years?  Really not typical.  There wasn’t that much a difference in services or insurance before and after my daughter got a diagnosis.  Maybe different in California.

    The national child study is really were I think these questions will be answered.  Unless someone finds a definitive environmental link or biological marker before then.

    http://www.nationalchildrensstudy.gov/Pages/default.aspx 

  13. John Seven says:

    Why would you be hostile toward parents who are having a lot of trouble in regard to their kid and seeking some help? We live in a society where help is often tied to labels – the parents are just seeking assistance through the terms we set up in our country. They’re not doing anything wrong. And if you have enough first hand experience with this stuff, a child with “autism-like symptoms” and a child with autism can pretty much cause the same level of stress and live with the same kind of dysfunction, thus making the label – “autism” – less a diagnosis of disease than one of symptoms and treatment. 

    • Why would you be hostile toward parents who are having a lot of trouble in regard to their kid and seeking some help?

      That’s an interesting question. But, at the same time, I see that hostility in a couple places in these comments. As well as the flip side of it … people saying that what the LA Times found to be normal practice (doing what you can to get kids treatment) isn’t normal. With the implication that, if it was, that would be bad. 

      After reading all the articles, I kind of understand where those parents are coming from. It doesn’t sound like parents that suck, or parents that want attention. It sounds like parents who see their kid struggling, and know the only way to get their kid help is if the kid is struggling in a specific way. To me, that sounds like a reason to be hostile toward our healthcare system.

      • Richard says:

        ” It sounds like parents who see their kid struggling, and know the only way to get their kid help is if the kid is struggling in a specific way. ”

        That’s a brilliant comment and insight. It says worlds about the dysfunction in American education and special education (fields I worked in for 30 years).

    • Guest says:

      it was never a disease. But insecure people react badly to the slightest difference. Steel your daughter for this reality, teach her that at the end of the day her belief in herself is the most important thing, and teach her about passive aggressives/ indirect communicators, and how to manage them in her own life. 

  14. In early 2008, I decided to take one of those online Asperger’s tests, the one that was posted at Wired some time back. The results pointed to high probability. 
    I dug around and found another test, this one a bit more concise, and again scored high for Asperger’s. 
    I’ve known about the autism spectrum for a number of years, but was unaware that I might fall on it somewhere. But it explains so much. When I was eleven, I began suffering migraines, and was sent to the best neurologist in town (whom we could barely afford but agreed to take a cut to help). He suggested that I be tested, and made the bold statement to my mother that I might never fit into the public school system because, as I recall, “he thinks differently”. This was still a number of years before Wing’s work. 
    Anyway, when the results came back, the doctor pushed even harder to get me into a specialized school, but the best my family could afford was a Christian private school, which was a living hell for sixth grade, followed by a return to public school, where I eventually learned to socialize as best I could, though I never really fit in.
    And yes, I was always the lazy underachiever; the one who could come in and ace an exam but refused to do homework because there were so many other interesting stimuli in my environment; the one who was socially awkward for a very long time; the “eccentric” one.
    (Edit: I had a point I was planning on making, but somewhere along the way turned this into a mini-bio. My point, had I stayed the course, was something to the effect of “I don’t suffer Asperger’s, I revel in it”)

    • Guest says:

      What sucks is when your brother has it too and is too ashamed to take his head out of his ass. Hard to revel in it then. But yes. 

  15. kenfine says:

    I believe there is also an environmental component to the ‘epidemic’. Two drugs taken in pregnancy, are associated with an increased incidence of autism. These are valproic acid (valproate) and, significantly, thalidomide. The therapeutic action of both drugs is at the GABA(A) receptor.

    Environmental chemicals which are associated with a higher incidence are organophosphate, organochlorine and pyrethroid insecticides, phthalates and methyl mercury. All are known to suppress GABA(A) transmission.

    Another chemical which binds to the GABA(A) receptor, suppressing its action is folic acid. Pregnant women are given up to 800ug of folic acid a day, which is several times the RDA for the natural vitamin, folate. Folic acid is an unnatural chemical which has to be converted to folate in the body. It suppresses he GABA(A) receptor more strongly than folate and can cause epilepsy in susceptible people at high doses. Many autistic people also have epilepsy

    I believe that chemicals which act on the GABA(A) receptor, either directly or indirectly, may be contributing to the rising incidence of autism, and that the most culpable chemical may be folic acid.

    I have written about this on my blog:

    http://www.nfkbdiseases.wordpress.com

  16. Victor Marks says:

    It really irritates me to hear people suggest that parents doctor-shop seeking a diagnosis on the autism spectrum.

    Getting this diagnosis does not mean winning the lottery. There are no healthcare dollars to benefit from. Insurance doesn’t cover it. The government doesn’t cover it. (And that’s OK. I’m partial to libertarianism, it’s my child, my job to provide for her needs.)

    Guaranteed? Services through the public schools. Depending on the school district, it could be an aid, it could be an ASD classroom, or it could just be a heterogenous class consisting of children with all types of disabilities. Want to see a tough learning environment? Watch a class composed of children with disabilities requiring very different teaching skills. BEH and ASD are not the same – but school districts chuck them together frequently enough.

    Not guaranteed? Social Security, Community Alternatives Program for people with intellectual and developmental disabilities (CAP I/DD, part of Medicaid) – you have to seek these things out, apply for them, and even then, no guarantees.

    So many of the autism-focused organizations are focused on legislative solutions – lobbying governments to create a financial or healthcare coverage entitlement. The ones that aren’t focused on lobbying governments are focused on anti-vaccine nonsense. I don’t have any affinity for either. Internet forums and newsgroups were no help, either. Parents regularly attacked us, saying “If you don’t do [hare-brained treatment] that we’re doing, you’re not doing all that you can for your child, you’re a bad parent.” Yes, that happens. My wife and I fought through looking for treatments that are science-based rather than charlatanism.

    I wish there were more effort spent on research into the cause of ASD, and into treatment or cures. Do I want a magic pill? Sure. Do I want to know what the causes are so as to avoid it? Yes, please. I’m surrounded by engineers in my work. I’d like to have these sorts of answers that no one has.

    My daughter was beginning to be verbal at age 1. She had a few words, notably “hello.” She greeted people at her first birthday party, running to the door and making eye-contact. Then she stopped speaking entirely for three years. We had her hearing tested. We had the ADOS and ADI-R conducted and determined she was “moderate to severe” on the spectrum.  We pursued private speech and occupational therapies. We got her communicating via PECS (picture exchange system, using cards with pictograms.) 

    The first argument she and I ever had was this:
    HER: “I want ice cream”
    ME: “no ice cream”
    HER: “yes ice cream”
    HER: “I want ice cream”

    We’ve since progressed past PECS and she now speaks with four and five word sentences. She’s affectionate, makes eye-contact, dresses herself and uses the toilet by herself. We’re very fortunate. We began with a diagnosis that said she might never speak, and would likely never tell us she loves us and have arrived at doing both of those things. 

    This doesn’t mean she’s not on the autism spectrum. We participated in a study that considered children with autism and their siblings who do not. Part of the study involved confirming the diagnosis, which it did- although this time the word “moderate” was used instead of moderate to severe. (These words are so vague as to not really be meaningful, but as a parent, they cause a lot of worry. Severe? SEVERE? What does that mean? No one really tells you.) This confirmation of the diagnosis was done in a different state by a different doctor than the one who performed the original diagnosis. It wasn’t doctor-shopping, as much as making sure the study was valid.

    Getting this diagnosis means both some grief and relief. I was deeply saddened at hearing the diagnosis, because I thought it meant giving up all the dreams I had for my daughter, all the things I hoped she would achieve. At the same time, it meant some relief for me as a parent – we could get past the diagnosis and work on the immediate needs like speech, social interaction, math skills, and all the other things we do as her parents.

    We’re doing pretty well. She’s 6 now. She knows how to tell time. She knows basic mathematics. She has a vocabulary in English, and she knows a few words in Hebrew. Each child is different, but I’m pretty proud. I want to get her into a mainstream classroom in a few years and see how she’ll do. I worry about her ability to be self-sufficient as an adult, but I remind myself that she’s 6, and not to get ahead of myself.

    • Victor, this is some powerful stuff. I wish you the very best, I truly do.

    • Guest says:

      You sound like a great father. 

    • Antinous / Moderator says:

      It really irritates me to hear people suggest that parents doctor-shop seeking a diagnosis on the autism spectrum.

      You should doctor shop all your healthcare issues until you get a reasonable answer. Anything can be misdiagnosed or undiagnosed.

      • Victor Marks says:

        I’m not opposed to seeking second, third, fourth or fifth opinions. 

        I’m irritated by the suggestion that people would shop around seeking a false positive diagnosis with a child who is not on the spectrum, in order to receive financial benefits or incentives. 

        This LA Times article isn’t the first time I’ve heard this repugnant suggestion. 

        If this belief that getting an ASD diagnosis means financial incentives becomes popular, it will only make it more difficult for family members who do have a real ASD diagnosis.

        • Ann Nunnally says:

          I hope it does not happen. However, I did have a patient who was so severely brain damaged that he could not speak or functionally communicate at the age of eight. However, the school district was not required to provide as many services for him as they were for the autistic children in the school even though he was more severe than most autistic children. So his mom did get the pediatrician to get her a note for the school so they would give him the autistic code at school only. Unfortunately, when schools give services by diagnosis instead of the needs of the child, this is the sort of thing that will continue to happen. Their insurance company suddenly refused to provide therapy services for him after having covered  him for four years.  Families have it the worst.

        • Richard says:

          LA is miles behind Westchester County in “doctor shopping” for an “LD” label for everything from extended time on SATs to foreign language wavers. This stuff has been going on for over twenty years and while its getting worse now  (“helicopter moms” now devolving into “blackhawk helicopter moms”) it’s not new.

          I remember being amazed at what some parents would do to get their academically weak but non-disabled kids into Harvard (shackle them with an “LD” label) then, when the kid gets in and flunks out in a nano-second the parents are shocked and want to sue.

  17. Baldhead says:

    As awareness of something increases, and acceptance of that thing increases, then more cases appear. This is similar to how there tends to be an increase in outed gay students in school where there’s gay- straight alliances and such. It’s not that these groups turn kids gay but rather that gay kids are better able to recognise and accept that they are in fact gay because of these groups.

    Once you know something is there and what it looks like it’s much easier to see how it was always there from the beginning.

  18. bklynchris says:

    Or, are there more people with autism? Yes
    Are there more people being diagnosed with autism? Yes
    Why suggest the two are mutually exclusive?
    As a parent of an ASD child I will NOT even dignify the LA Times article with perusal.
    What is there to be gained by saying that there is no increase in the incidence of autism?  What are the policy implications with regard to saying there is vs. saying there is not?
    AND, guess what? I am a parent of a child who although is clearly on the spectrum, have chosen to request that he is never identified as such with regard to bureaucratic labeling, be it the Dept. of Ed, or insurance.  Why? Because the label is damning, limiting, and permanent.   He instead receives services under “speech impairment  and other health issues”, and insurance billing under the diagnosis of developmental delay.

    Having been deeply imbued in the special needs parent community in NYC for 12 years now I can tell you I have met significantly MORE parents in denial that their child is on the spectrum than seeking to identify their child as such even when they have ASD.

    Now, were I to even consider for a moment that my child’s disability (a term which took me a decade to accept) was a figment of my imagination or a result of my crappy parenting, well then all I need to consider is his recent diagnosis of epilepsy.  In the last two months he had two huge grand mal seizures that I thought came out of nowhere.  Only to be told by his neurologist that he was more likely to develop a seizure disorder given that he is, indeed, on the spectrum.  Which by the way is another neurological mystery that is on the rise.

    Anybody who even for a moment claims their child is on the spectrum when they are not (which believe you me, I could not even imagine how it can be faked) is not a parent gaming the system but one who is more likely to have Munchausen by proxy.

    Quite a provocative article series.  Like I told a friend of mine many years ago after reading a book review containing the following topics, “autism and 9/11 have become the tits and ass of the literary world”.  Unless real positive work results from such journalistic antagonism, I really wish writers would literally stick to tits and ass.

  19. bklynchris says:

    Of final note, popularizing a myth that people with ASD do not really exist to the extent that they honestly do will ultimately result in across the board decreases in public funded programs and maybe that is the real, though hidden, agenda of this series.  If you will excuse me I am now going to gouge out my eyes and rip out my hair and not necessarily in that order.

  20. rivette says:

    The ability to get critical early intervention for your child when you wouldn’t be able to afford it is not so much a “financial” incentive as it is a “helping your child live a normal life” incentive. 

  21. golvio says:

    What really bothers me about the people claiming the Autism spectrum is the new ADD is that it isn’t comparable. There are no pills you take for symptoms of Autism, and medication is only necessary if there are comorbid conditions like seizures, anxiety, or OCD.

    • Temple Grandin, an animal scientist and someone well-known with ASD, speaks eloquently about meds for Autism.  For her, she advocates for the least intensive and lowest dose as an overarching approach, especially for children.  The co-morbid and associated struggles of sensory overload and anxiety for example,  are often helped by medications.

  22. subhan says:

    I’d be interested in seeing exactly how many of the new cases of autism spectrum are based on the ‘educational criteria’, vs. DSM IV.  My daughter (age 8), has an IEP at school based on the school psychologist & my ex-wife deciding she has autism spectrum, despite the fact that she very clearly does not meet DSM standards.  The educational system uses a set of criteria that are solely based around simple social behavioral criteria.  Unfortunately, these criteria have many potential sources & overlap with many other conditions.  In my daughter’s case, she has Executive Function Disorder(which apparently doesn’t qualify her for an IEP), and a diagnosis from her behavioral pediatrician which clearly states ‘not autism spectrum’.  Schools use this diagnosis because it is easy to justify using their criteria.

    • Ann Nunnally says:

      The psychologist should be using DSM criteria. In fact, teachers can never diagnose autism. Psychiatrists and developmental pediatricians are really the best at making the diagnosis.  In the school systems where I live, an outside diagnosis for autism and ADHD are required before services can be delivered.

      My experience with school systems is that they do not want to add students to their special education population. They do not get extra resources for having more kids. I am a speech language pathologist, and I really wanted to have only the children that really needed my help on my caseload because the caseloads were huge.  

  23. Eleanor Wallace says:

    It is patently absurd to buy into this notion that parents, for some bizarre reason, are running around trying to get their children diagnosed with autism.  Having been there–along side many, many other parents that I came to know in person and online–I can say with confidence that EVERY parent I know with a child exhibiting signs of developmental delays is fervently hoping that nothing is wrong, that their child will grow out of it, and hoping against hope that no professional will EVER utter the dread word, “autism.”  Because with “autism” comes words like “no cure,” and “may not ever speak” and “may never be toilet trained” and “may be institutionalized,” etc.

    Moreover, as noted several times by commenters above, the diagnosis DISQUALIFIES children from receiving numerous services that would otherwise be covered by insurance companies (for example, speech and occupational therapies, at least in states that have not yet passed legislation to keep insurance companies from doing this).  And it is very sad, because speech and occupational therapy are exactly what a child on the autism spectrum needs–and quickly–and in greater qualitities than the education system is likely to provide for them.

    As for the original question:  Do more people actually have autism now?  I don’t know.  I have, however, asked this question of a number of special education providers in the public school system, whether it is a question of more diagnoses or actually more kids on the autism spectrum, and they tell me that they are, in fact, seeing more kids on the autism spectrum.

  24. Controversies are sometimes a somewhat created illusion, which misses the truth of a situation.  In this situation, painting this as an either-or scenario is misleading.  The tension of opposite camps on this matter hides reality.  What’s the reality?  The reality is that the apparent rise of ASD is because of increased sophistication of diagnostic tools and awareness AND there are parents unfortunately, who needlessly overreact to their child’s behaviors and can only see what they want to see.  Are some parents trying to stuff their kids with anxiety disorders and/or other social/sensory/behavioral struggles into an Asperger’s diagnosis?  My guess is yes.  However the debate of which is true is one that misleads.  It’s both. More on this subject at http://www.ldresources.org

  25. Controversies are sometimes a somewhat created illusion, which misses the truth of a situation.  In this situation, painting this as an either-or scenario is misleading.  The tension of opposite camps on this matter hides reality.  What’s the reality?  The reality is that the apparent rise of ASD is because of increased sophistication of diagnostic tools and awareness AND there are parents unfortunately, who needlessly overreact to their child’s behaviors and can only see what they want to see.  Are some parents trying to stuff their kids with anxiety disorders and/or other social/sensory/behavioral struggles into an Asperger’s diagnosis?  My guess is yes.  However the debate of which is true is one that misleads.  It’s both.
    Reply

  26. LintMan says:

    The need for a specific, “official”,  autism label is a real thing.  With it, some school systems will provide/allow for things like an extra helper/assistant in the classroom, alternate class workloads and testing conditions for the child, etc.  Without it, none of that might be available.

    Is that incentive to get that label?  I suppose so, but I see little incentive for parents to seek that stuff out unless the their kids really needed it and their teachers were asking for it.

    In our case, we never really tried to get an official label for our son, until our child’s  school teachers and administration asked us to pursue getting the “label” so that they could be authorized to provide the help and services they thought he needed.  And it’s not one size fits all – he would not receive services or “benefits” he didn’t need.  So again, if the label didn’t actually fit the child’s issues, they wouldn’t receive the unnecessary services.

  27. Tarak Xformer says:

    A friend who’s kid is in grade 2 or so most likely has Aspergers. Mostly normal except for the absolute obsession with trains, seems to constantly think about them, brings them up “out of the blue” during other conversations. And the hand flapping when he gets excited, like he’s trying to generate enough thrust to get off the ground.

    The parents do recognize it, and we’ve talked about it. But they also have no plans to seek an official diagnosis because the school doesn’t offer services for anything like that anyway, so why stigmatize him needlessly.

    I’ve said the trains obsession doesn’t matter. The world needs those kind of people anyway, and if he grows up to become a mechanical engineer building train equipment or being an enthusiastic railway employee, what is wrong with that? I bought the boy Rail Simulator as a gift when he was about age 4. My attitude is, might as well feed the interest, and see if it blossoms into something fruitful.

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