Autism: Awareness isn't enough

Science writer Steve Silberman does an amazing job covering neurodiversity and the Autism community, so I've been waiting to get his take on the recent Centers for Disease Control data that found the rate of autism prevalence in the United States to be 1 in 88.

That prevalence rate has been on an upward trend for a while, and whenever the new stats come out (these are based on data from 2008), it triggers a shockwave of hand-wringing coverage that treats these figures as if they must be based on an increase in actual incidence of autism, as opposed to changes in diagnostic criteria and methods. This matters, Silberman writes, because the science seems to back up the idea that what we're actually seeing is better diagnosis.

That theory is bolstered by two recent studies in South Korea and the United Kingdom, which suggest that autism prevalence has always been much higher than the estimated 1-in-10,000 when the diagnostic criteria were much more narrow and exclusionary. What’s changed now is that — in addition to the radical broadening of the spectrum following the introduction of diagnostic subcategories like Asperger’s syndrome and PDD-NOS – clinicians, teachers, and parents have gotten much better at recognizing autism, particularly in very young children. That’s actually good news, because by identifying a child early, parents can engage the supports, therapies, modes of learning, and assistive technology that can help a kid express the fullest potential of their unique atypical mind.

The real problem, according to Silberman, isn't a mysterious increase in the number of children with autism. Instead, the problem is how we, as a society, treat those children once they are no longer children.

Once that 1-in-88 kid grows to adulthood, our society offers little to enable him or her to live a healthy, secure, independent, and productive life in their own community. When kids on the spectrum graduate from high school, they and their families are often cut adrift — left to fend for themselves in the face of dwindling social services and even less than the meager level of accommodations available to those with other disabilities.

Meanwhile, the lion’s share of the money raised by star-studded “awareness” campaigns goes into researching potential genetic and environmental risk factors — not to improving the quality of life for the millions of autistic adults who are already here, struggling to get by.

Instead, what people with autism really need is to be a part of their communities. That means acceptance of difference is more important than awareness of difference. It also means that respect, support, and inclusion are more important than frantic attempts to "cure" children who might not have anything really wrong with them.

Read the rest of Steve Silberman's story on autism awareness, autism acceptance, and what people with autism say they really want.

Image: Autism Awareness Ribbon, Colorful Puzzle Pieces, Free Creative Commons Public Domain Download, a Creative Commons Attribution (2.0) image from walkadog's photostream

• [Deb Johnson]

  I have Asperger’s syndrome and yes, feel ignored. Autism awareness is great. But it’s so much more than a child that won’t or can’t communicate.  That’s how it is so often portrayed in main-stream media.  The inclusion of Sheldon in the Big Bang Theory is so welcome in my life.  Finally someone I can point to and say, hey that’s me, in a male body.  That’s my quirks and habits and bizarreness portrayed.  Finally, someone who Asperger’s syndrome people can embrace as saying we’re okay, we’re different not defective.  If there is one thing I’d like people to  carry away from World Autism Awareness day it is:  just accept that we are different than neurotypical folk.  We aren’t broken or defective.  Just listen to us and hear us for a change.  We do have voices and intelligence.  Look at Sheldon, for instance in terms of intelligence. 

  • [penguinchris]

    I agree regarding Sheldon on Big Bang Theory, but I also don’t find him endearing the way so many people seem to. I think I identify with him too much, while bemoaning the often extreme nature of his actions (and thinking: do I do that?). 

    I can’t tell people that I’m like Sheldon because I fear they’ll equate me with the severe negatives of his character. I guess the negatives can often be readily excused if one is as outgoing as Sheldon is, but I’m not.

    Come to think of it though, it is interesting that so many people do find Sheldon to be endearing. If 1 in 88 people are on the autism spectrum, then that explains most of his fans ;) Although I know people who are not autism spectrum who like him just the same, so who knows.

• [Guest]

  I only partially buy into the “better diagnostics” explanation. That is to say, I reserve the right to consider the possibility that the rise in autism diagnoses is somehow related to the rise in Down syndrome diagnoses. Alas, I’m no doctor, but I’m pretty sure that the rise in Down syndrome diagnoses has next to nothing to do with improving health care techniques.

  So… when do the reports on Williams(-Beuren) syndrome come out?

  Thank you for pointing out that there may not necessarily be something “wrong” with autistic, Down, Williams people. So many genetic changes in wide swaths of people… sounds like evolution to me. There are so many wonderful traits that these people hold that humans do not, for instance, an inherent lack of racism in Williams people.

  Of course, it’s my sincerest and darkest desire to see humanity drive itself into the non-existence that it has earned over the past few millennia, so I may be a tad biased toward anything not human.

  P.S. When I say that these people are not human, I am not implying that they are less than human. I am explicitly saying that they are more than human. That said, I do not apologize if my quasi-Nietzschean opinion has offended any humans. Suck it up.

  • [ChicagoD]

    How did you get two “likes” for saying people are not human? 

    BTW, No need to apologize at all. I know plenty of people who divide people into human/not human categories. In fact, I know some guys who also believe in Ubermensch!

    • [Guest]

      :) I love self-answered questions. :)

  • [Shay Guy]

    P.S. When I say that these people are not human, I am not implying that they are less than human. I am explicitly saying that they are more than human.

    You do us no favors either way.

    • [Guest]

      My previous comment to you was not particularly classy. I apologize if I misinterpreted your comment as prejudicial.

      • [Shay Guy]

        I didn’t get a chance to see it. Now you’ve got me curious.

  • [Maggie Koerth-Baker]

    Is there a rise in Down’s? I’ve not seen that data. But, if there is, I’d suspect that has to do with a lot more women choosing to have children at older ages—something that we’ve long known increases the risk of Down’s. 

    • [digi_owl]

      I was pondering that exact same response. It seems that education and work result in fewer and later in life pregnancies.

    • [Guest]

      Your guess is correct, insomuch that it is what is most commonly speculated. Perhaps this is the substitute for my evolution argument, perhaps not.

      There is an article on WebMD called “Increase in Babies Born With Down Syndrome” by Bill Hendrick, vetted by Louise Chang, MD.

      • [Gyro Protagonist]

        If you keep bringing up this evolution gambit, you should at least give some mechanism by which trisomy of one particular chromosome confers any sort of selective advantage. Individual or group level is acceptable.

        Do you think that Edward Syndrome and Patau Syndrome are also evolutionary steps forward? Same molecular mechanism and genetic lesion type, just a different chromosome.

        Quick addition – in the WebMD article you reference, you can find the following sentence: “During the periods studied, ‘prevalence at birth significantly increased among births to older mothers and decreased slightly among births to younger mothers.’” So yeah, it seems that Maggie’s explanation is pretty spot-on.

        • [Guest]

          When you have a firm grasp on the concept of entropy, give me a hollar. While you’re at it, work on your whole racism-insulin analogy a bit more too. You almost had me convinced.

    • [Chang Terhune]

      Not to threadjack here, but…  My wife had our daughter when she was 40-41.  Our OBGYN said the increase in Down’s among older women was not entirely substantiated as no one looked at the percentage of kids with Down’s born to “younger” mothers.

      Oh, my kid doesn’t have Down’s.

  • [Neural Kernel]

    We’re NOT (all) waiting for Magneto to lead us to world domination, but thanks anyways :)

    • [Guest]

       OK, that was kind of funny. :)

  • [Gyro Protagonist]

    You don’t really have a firm grasp on this whole evolution/speciation thing, do you? Isn’t it just more likely that as awareness of ASD’s increases, more people will be diagnosed with them (hard to find what you’re not looking for…), and that ASD’s represent one aspect of human neurodiversity rather than the dawn of a new ubermenschian species?

    Also, labeling people with a medically defined condition (as imperfect as that definition is) as being something separate and apart from “normal” humans is a little worrying… Your argument is like claiming type 1 diabetics are the next stage in human evolution and are “not human.”

    • [Guest]

      I have a firm grasp on modern genomics. What you do not have a firm grasp on is the future of genomics. I’m sorry for you.

      If you can honestly equate a lack of racism with a lack of insulin, then I have no interest in discussing anything with you.

      • [Gyro Protagonist]

        You use this word “genomics.” I don’t think it means what you think it means. How do you prove a lack of racism? The molecular lesion in Williams Syndrome is a microdeletion of the long arm of chromosome 7 – there are TONS of other genetic disorders (including predispositions to certain types of cancer) that have the same type of lesion. Why is Williams Syndrome different and special? 

        Interestingly, the same authors who reported a lack of racial bias in children with Williams also reported that gender bias was still present. Will that disappear in the next generation?

        Feel free to enlighten me on the future of genomics.

        EDIT: Since I can’t reply to your post in a threaded way, I’ll do it here.

        The racism-insulin analogy was deliberately absurd – are you implying that there is a gene for racism (not simply racial bias), and that genetics is a better explanation than social conditioning? You can’t pick and choose which genetic alterations “count” as being an evolutionary step, you can label all of them as such or accept that there are certain common mutations which contribute to the overall diversity of the human gene pool rather than serve the “next step” in human evolution.

        I’m not using anything as a weapon (although dual-wielding would be awesome). It’s just interesting that racial bias and gender bias appear to be under separate loci of control (assuming the study is correct), and I brought up the next generation thing to highlight the fact that you’re thinking of evolution as a linear process whereby things (in your example racism) constantly improve (such a tricky word to define…) over time instead of simply responding to selective pressure.

        I’m not sure where you’re going with the entropy bit – it just means an increase in the unusuable energy of a closed system over time, not “randomness” as is used colloquially.

        You still haven’t answered the big question – do you honestly believe that people with ASD’s are better than “normal” humans? What do you propose should be done with us untermenschen?

        • [Guest]

          Seriously. In one paragraph you accuse me of being a bonehead for bringing up an “untenable” “opinion” on the racism aspect, and in the next paragraph you use it as a weapon against me while dual-wielding pseudo-feminism.

          Perhaps you should look into the concept of a strawman while you’re at it, since you’re so fond of them.

          Anyway, at least you’re starting to get the whole reason why I brought up entropy. Good job! Here’s a gold star, my friend.

        • [Shay Guy]

          @google-926ced26a029a0cc5020dff100520089:disqus : Don’t condescend. It doesn’t help your case.

  • [octolover]

    you remind me of one of my (thankfully ex-) library patrons who used to tell me about how They knew he had special powers, and that’s why They wanted to medicate and suppress him. 

  • [eviladrian]

    I’m just waiting for Richard Dawkins to rap you on the knuckles and say “no teleology in my classroom!”

• [Neural Kernel]

  Sheldon is a much better example for lay people than many others. I do worry, though that the common theme in many (if not most or even all) depictions of autism in popular culture essentially portray us as having superpowers.

  • [Nathan Brown]

     I think the desire to play up the savant side of autism is some way of trying to not portray autistic people negatively. It’s a fine line to walk when you’re portraying something that can be quite detrimental to functioning within society as it currently stands. You want to be accurate, but you don’t want to make them seem like less of a person, and that can easily happen when you portray someone as less capable, at least in most obvious ways. So, to counteract that tendency, you give them superpowers.

    This is, I think, a problem in real life as well, when people deal with people with autism and other developmental problems. People think they’re being accommodating, but they’re just doing things for him, things that he either already knows or could learn given time, and so taking away the chance at independence he could have (sorry, I lapsed into specificity there).

    I think you’re right, Sheldon’s really quite good because he, while very much smarter than average, doesn’t seem to be smarter than Leonard, Howard, Raj, or the other scientist characters. His autism/Asperger’s is not his defining factor, his arrogance is. 

    For another example, Gary in the show Alphas is an autistic adult (yes with a superpower, but his superpower has nothing to do with his autism and the rest of the main cast have assorted superpowers as well). He’s a much more classic example of autism than Sheldon (who’s quite close to neurotypical). He does the repetitive motions, doesn’t make eye contact, has an atypical speech cadence, and of course a very strict routine. He lives with his mother and you can see the strain he puts on her at times. He’s not an idiot, but he’s no super-genius either and his motivations are very normal ones. He’s really quite an interesting character and his own struggle to be more independent is very touching.

• [Alan Olsen]

  What is needed is awareness among HR departments about autism.  So many want people to conform to the norms of social behavior instead of understanding them for their strengths.   Some companies that have a lot of engineers in management understand this, but many don’t. (Fortunately I work for one that does.)

  • [BadIdeaSociety]

    I like where you are going with this, but what exactly are the autistic bringing to the workforce that would irritate people who work in HR?

    I have worked in education for years, and one of the greatest challenges I have had with students who are in the higher-functioning autism spectrum is that few of them (2 out of 10) had this dangerous habit of responding to out students with downright mean comments. These comments could be following polite small talk (think: The first scene from Napoleon Dynamite. Kid:  “What are you going to do today, Napoleon?” Napoleon: “Whatever I feel like. GOSH!”) or an extreme response to a difficulty understanding (IE: Student: I don’t understand F.O.I.L.  Autistic Student: It isn’t my fault you are a stupid n-word.”) which lead to the students being somewhat outcasts. Is it that kind of thing that you are talking about?

    • [digi_owl]

       Likely. My personal take on is that while we (yep, adult diagnosed aspie) have the proverbial social antennas, they are unfiltered. So our lives is a bit like trying to listening to a radio that is always between channels. End result is a lack of nuance in social interactions. But these can still be learned, if someone takes time to explain it all (tho it will be exhausting, as one is basically replacing subconscious responses with conscious analysis). Also, taking time to explain may well make the person explaining awkwardly aware of some of the oddities of human social interaction.

      I suspect a lot of those able to hold jobs in the past found themselves in basement archives and similar. Now much of that is automated with the switch to computers.

• [valeriekeefe]

  Coming from a group whose prevalence magically increased by 2 orders of magnitude over the last quarter-century, I know where you’re coming from with regards to the privilege and neurotypicalism on display.

• [enterthestory]

  “the problem is how we, as a society, treat those children once they are no longer children.”

  No, the problem is those who are never diagnosed. The diagnosed ones are the lucky ones: even if they don’t get extra help, at least they can make better decisions. Without a diagnosis, an AS person spends their life trying to follow society’s norms, norms designed for the NT skill set and interests.

  To turn the cliché on its head, will nobody think of the adults?

  • [awjt]

    I’m not sure what a diagnosis is good for unless there’s useful treatment.  Otherwise, it’s smoke in the wind.  What good is it for a person to know, “Oh, I’m on the spectrum,” unless there are actionable items?

    Tell your co-workers?  Tell your HR department?  Psh, I think not.  Better to try to blend and not risk castigation.  Once they separate you from the herd, you are toast!  Unless it’s so glaring, painful and bad that you MUST… then I’d just keep it under your hat and deal with it personally, privately, among yourself and a most trusted other.

    There’s a syndrome for EVERYTHING these days.  I am uncertain of the utility of this state of affairs.  But I am tending towards thinking that thinking is counterproductive.  There is a lot more that unites us than divides us.  I’d rather think along those lines.

    • [enterthestory]

      A diagnosis has five main advantages, and one disadvantage. 

      The disadvantage is possible prejudice. 

      One advantage is state help (if available). 

      Another is state understanding – if your country has a welfare system and you find yourself unemployed, it is a great help to explain why you find complex work easy, but cannot answer the telephone. Or if you get in trouble with the police, they may assume that lack of eye contact and being literal are signs of being  a troublemaker.

      Another is finding friends. E.g. WrongPlanet can be a lifeline.

      Another is convenience, so others can understand.

      The final advantage, the biggest one in my opinion, is to make better decisions. It allows you to avoid disastrous life decisions. For example, you excel at school, because the rules are clearly defined. based on that you may assume that you can excel at everything. So you might choose a degree like marketing, or a job like teaching, or persuade your dream date to marry you (with enough intelligence and confidence it is possible). Only then do you discover that you do not have the essential skills, and then it’s too late.

      Knowledge is power.

      • [Deb Johnson]

        Excellent riposte @enterthestory  Knowledge is power, definitely.  The sooner you get that definition of why?  Instead of getting slapped with the ADHD like both my daughters got @ age 6.  Now we know they both have Asperger’s and we can get support and help for them. We can get resources.  So so so true that knowledge is  power, with regards to Autism.

      • [penguinchris]

        That was a great response, but doesn’t tell the whole story that @awjt:disqus  was going for… what do you do if you’re not at the level where you need state help/welfare, but you still have problems with things like talking on the phone (as I do)? 

        You sometimes have to hide your tendencies and your diagnosis (whether you have one from a doctor or if you’re self-diagnosed). It’s something you have to deal with to get by without relying on outside help. And these days you can’t tell your boss or HR anything like this because they’ll find an excuse to fire you – they won’t be sympathetic and try to work to your strengths.

        If you are otherwise good at your job and make good money, you’re going to suck it up and answer the phone or find a workaround rather than ending up unemployed and on the dole. 

        I definitely do agree that having a diagnosis or simply knowing what your mind is doing is extremely important. But what you do with that information will vary wildly from person to person.

      • [bkad]

        I’m not on the spectrum,  but I do have a condition that is paired with non-verbal learning disabilities in 85% of cases.  I’m almost certain I’m one of those cases, though I’ve never been diagnosed (I think sometimes my failure to read social cues combined with my being an scientist get me labeled as aspergers, but it’s not really the same thing).

        I sometimes do wonder if it would have helped to be diagnosed earlier. I’m not sure the resources would have been there when I was a kid (worse, I’d be pulled away from my peers; this was before mainstreaming the different kids became popular). But, it would have been nice to know as adolescent/young adult. I wouldn’t have been so hard on myself about certain things, maybe learned some social and organization coping skills before it was too late, and avoided some unfruitful education/career/social plans. But then again, I don’t know how I would have handled believing there was something ‘wrong’ with me, which would have been my impression.

  • [digi_owl]

     I do at times wonder how many people in jail for some repeat offense have some kind of undiagnosed issue that makes them not function properly within social norms.

  • [Christhegirl]

    FWIW, my daughter has a diagnosis (Asperger’s), and she is absolutely desperate to follow society’s NT norms — far more so than I am, although I neither have nor desire any diagnosis. It would be nice if diagnosis always led to self-awareness and better decisions, but it isn’t necessarily so. Sometimes it’s just a label, a marker for her, despite all our attempts at the opposite message, that she’ll never really be “okay.”

• [scatterfingers]

  I disagree because anecdote.

  • [bkad]

     You’re wrong because personal attack.

    • [awjt]

      I totally agree because milquetoast and sycophant.

      • [Shay Guy]

        Your argument fails because condescension.

        • [Antinous / Moderator]

          Because I said so.

        • [Shay Guy]

          @Antinous_Moderator:disqus Because I didn’t say so.

• [Deb Johnson]

  @boingboing-7160c7db52df96e5fe196a6c9ce73f83:disqus   I don’t think there is the huge rise in Down’s syndrome cases like there is in autism.  Dr. Simon Baron-Cohen has done studies that show that the later a person has children in their life the more the chance for autism.  So that’s another factor in there.  Also, there is the huge factor of wheat and dairy based diet causing some Autism symptoms in some children.  I think it’s a perfect storm of better diagnosis, and more autistic people  having children, and more awareness of symptoms early on that is causing this rise.

  As far as brilliant goes, yes, well I’ve tested in the brilliant category on IQ tests, but I’m too dumb to know when to shut up in social networking.  It’s hard being a genius at times LOL.  But I try to speak up when I can, and where I can.  Both my daughters have Aspergers as well.  So, I worry about them in the future.  With this anti-bullying campaign going on, I feel somewhat reassured.  But realize that they will be discriminated against, most likely.

  I’ve been discriminated against.  I haven’t worked for years due to this Asperger’s crap in my life.  Yes, I’m lucky I get to be a stay at home mum.  But, worry about my daughters.  A great deal.

• [Jacob Horn]

  I am not sure I feel comfortable making a claim about autism awareness or autism acceptance, but I would like to add the wonderful blog Aspie Rhetor ( http://aspierhetor.com/ ) to the conversation. The articles there have been very eye-opening for me.

• [yeastbeast]

  First: Autism Spectrum Disorder (a great grab-bag of genetically and/or clinically defined developmental and behavioral disorders) is for real and more prevalent than previously thought.

  That said, the clinical criteria for an autism diagnosis are surprisingly subjective. For the majority of ideopathic (non-genetic) cases, there are no molecular diagnostics or biomarkers, so it boils down to a pediatrician deciding that a kid is behaving oddly or developing certain skills too slowly.

  Thus, I suspect that many children are given false diagnoses. Incentives for doing so could include:

  -greater awareness of ASD on part of physicians and parents leads to potentially excessive vigilance.

  -a medical system that rewards cost-efficiency and expediency over careful observation and interaction with patients (“Funny-looking kid… must be autistic. Next!”)

  - a public education system that devotes additional resources to kids with medically defined learning disabilities, creating an incentive for parents to seek out an ASD diagnosis.

  What’s needed are clear molecular or physiological criteria for ASD, a goal that researchers in the field are hotly pursuing.

  For now, we should take this CDC report with a grain of salt.

  • [nixiebunny]

     My understanding of the brain type is that it’s a brain with different strengths and weaknesses, which is a rather subjective thing to begin with. Perhaps there is some common physiological marker, but I don’t expect one to appear.

    All I know is, when I took my Asperger’s diagnosed son in for social skills classes, I found myself discussing the nature of consciousness with the other dads in the waiting room, rather than discussing sports. So I think it’s a genetic trait.

  • [Steve Silberman]

    > ”Funny-looking kid… must be autistic. Next!”

    Frankly, I suspect that only someone who hasn’t spent a lot of time around autistic people would say that. I’m a highly skeptical person, and particularly skeptical about trendy diagnoses.  But everyone I’ve met with a clinical autism diagnosis (and most, but not all, of the self-diagnosed folks) seemed like they really did have autism to me. Of course, I’m not a clinician, so that’s purely subjective and anecdotal. Just sayin’ — autistic is quite distinct from “funny-looking,” to say the least (and there are plenty of gorgeous autistic people, for the record.)

    • [yeastbeast]

      I agree. I’m referring to the infamous FLK diagnosis described here: http://www.npr.org/templates/story/story.php?storyId=7496704

  • [Christhegirl]

    Thank you for mentioning the subjectivity of diagnostic criteria. It’s frustrating. Yesterday our local NPR talk show was interviewing a man with decades of experience working with people on the spectrum. Addressing the lack of definitive medical testing, he said, in a flip tone, “If something walks on four legs and has hair and barks, you don’t need a biopsy to know it’s a dog.” 

    Now, I guess I’m not a trained neuropsychologist, but I would think that deducing the underlying intricacies of a human brain, ascertaining their cause, and predicting best practices and outcomes after a few hours in an unfamiliar clinical setting is probably a bit more complicated than knowing something is a puppy. I don’t know that there will ever be clear biological markers, but let’s be honest — it’s a subjective categorization, so much so that, in the case of AS, the Powers That Be are about to rule that it doesn’t even exist anymore. I believe in diagnosis and intervention, but I wish there could be more acknowledgement and discussion around this point before we just say, “1 in 88! Because someone said so!”

• [Antinous / Moderator]

  Good lord.  France regards autism as a psychosis and tries to treat it with psychotherapy.

  “The first time I went to see a doctor when my (autistic) son Gael was three and we thought there was a problem, the psychiatrist asked me if I had wanted him – if it had been a wanted pregnancy!” says Candy Lepenuizic, a British woman married to a Frenchman.  “Then she asked what sort of dreams I had had while I was pregnant with him. And suggested the whole family have a course of psychotherapy.

  http://www.bbc.co.uk/news/magazine-17583123

  • [Guest]

    If it makes you feel any better about France, we used to chemically castrate the mentally “handicapped”, in Alberta anyway, and relatively recently too. Good times, good times. Gotta love it when people slam eugenics and genocide, and then turn around and do the very same thing to their own citizens.

    In any case, Leilani Marietta Muir (and about 700 or so others) sued the pants off of the Queen, and won. It’s only a matter of time before someone does the same thing to the French government. I’ll be waiting with popcorn… the show will be very enjoyable.

    Oh, but don’t take it from me. Humans obviously aren’t complete psychopaths, and I’m just making all of this up on the fly. LULZ.

  • [Monica Norton]

     30 years ago, Autism was seen as a result of upbringing.  My mother waited 14 years to tell me why my sister is different, because she was ashamed and afraid that once people found out, she would be looked down on again.  My sister’s kindergarten teacher once told my mother that my sister’s actions were a result of my parents spending too much time with the baby.  When my mother met another woman with a child with much more severe Autism (my sister was recently re-diagnosed with Asberger’s), you could almost feel her relief that there was someone else she could talk to.  Maybe Autism Awareness is not getting the results needed for everyone, but it has helped a lot to be able to freely admit that someone in our family is Autistic.

• [Guest]

  Maia Szalavitz from Time Magazine has written a wonderful piece today called Autism: Why Some Children ‘Bloom’ and Overcome Their Disabilities.

  I wonder if she reads Nietzsche? ;) I’m kidding, obviously she’s a total moron who has no idea what she’s talking about! Thanks for pointing out the flaws in my logic, all. You’ve saved me so much public humiliation. How can I ever pay you back? LULZ.

• [anharmyenone]

  Bless you Maggie for posting this.

• [Chang Terhune]

  Great article as always, Maggie.  My nephew is on the spectrum so whenever I see an Autism article I always check it out.  My reaction to the findings of this study were exactly hers (though I am not a scientist).  I figured they’d gotten better at diagnosing it, not that it pointed to an increase in autism.

  And thanks to those who pointed out there’s not as much money going towards supporting folks on the spectrum once they reach adulthood.  I’ll make sure my donations go towards programs that do that.

• [Antinous / Moderator]

  Autism: The Musical is quite good, BTW, for showing a, um, spectrum of autistic children ranging from violent and non-verbal to highly intelligent and sensitive.

• [Christhegirl]

  Upstream of here, a parent said that “when I took my Asperger’s diagnosed son in for social skills classes, I found myself discussing the nature of consciousness with the other dads in the waiting room…. So I think it’s a genetic trait.” I want to know this parent. I would do that too.

  But isn’t that GREAT? Don’t we need people who will discuss the nature of consciousness sometimes? This is why I have such mixed feelings about diagnosis. It’s great if it opens up avenues for being helpful. But it’s still a diagnosis, and we don’t diagnose things that are healthy, right?

  An article I read yesterday suggested that increased diagnosis reflects an “appreciation of neurodiversity.” However, I’m concerned that it more reflects a pathologization of neurodiversity, a sorting into okay and not-okay. No longer can someone be quirky or eccentric. They have a syndrome. They have a disorder. This troubles me.

• [Eric0142]

  There’s a KickStarter project that just launched that’s trying to finish an iPad “game” for teaching children with autism daily routine things like brushing ones teeth, and making the bed, etc. Looks promising and they’re working with local autism researchers.
  http://www.kickstarter.com/projects/2029331083/popchillas-world-a-game-for-kids-with-autism

• [shay simmons]

   ”Alas, I’m no doctor, but I’m pretty sure that the rise in Down syndrome diagnoses has next to nothing to do with improving health care techniques.”
  It has a lot to do with it — children with Down’s syndrome very often have other serious medical issues and thirty or forty years ago would have died fairly young.

  • [First Last]

    That isn’t relevant though because we’ve been able to diagnose Downs Syndrome through a simple blood test that can be administered before the age of 1 since 1959, and have had in-utero screening since 1983.  It’s also not like they were dying shortly after birth – thirty years ago their life expectancy was 25 which is more than enough time for Downs Syndrome to be identified without blood tests even in someone who didn’t have the usual telltale physical characteristics.

• [Guest]

  As the NY Times’ Benedict Carey wrote today in “Gene Studies of Autism Point to Mutations and Parents’ Age”, it seems that sometimes two apparently conflicting theories do not have to be so conflicting after all. It makes total sense in hindsight, of course.

  The best quotes are “These studies aren’t so much a breakthrough, because we knew this was coming” and “This is a great beginning, and I’m impressed with the work, but we don’t know the cause of these rare mutations, or even their levels in the general population… I’m not saying it’s not worth it to follow up these findings, but I am saying it’s going to be a hard slog.”

  I’m not a psychic, and I’m not a total moron (just partially).

• [Max Gron]

  Commons makes sense (the company’s name) to an extent, because some autistic people are common people, even normal people. I met people in the autistic community, without a social group, they’re a bunch of normal people, I’m not making this up: so everything they do is a little bit different, I still see as they claim to be, and they’re right, that they’re normal people. On this topic, some of the ones that claim to be normal are more than that (they’re not normal), i.e., there’s something truly negative they accept as a reality and that’s why I like or love them, they also fasinate me with complex but very happy things (oh I said autistic people are happy, so shoot me, is it a crime to know that they’re happy?).  Still on topic, analysing nothing from autism at all, I see that the autism doesn’t exist, it’s thin gentle air to me, it isn’t really there. Autism is just thin air, nothing, it doesn’t exist, therefore the diagnosis doesn’t exist. Being ‘autistic’ is just a problem for a reason that you should have a problem: if I was being an arsehole to you, wouldn’t it cause you to have problems? Your problem is that I’m an arsehole (just an example) the same reason my problem could be that someone begs me for tobacco. This ‘problem’ (autism) with the logic I stated is therefore not really a problem, but is being a victim because people are bad to you, simple! I see the positive in this: this is an opportunity to spend time with more important autistic people, or at least anyone the polar opposite of the people you’re used to (the opposite of the negative people).  Try to prove you need no treatment, a good anti-cure needs convincing the psychiatrist you have no condition, if s/he’s convinced, you will never be cured, trust me, I’m trying to never ever be cured, so I need thorough convincing that I’m sane. Good luck.