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New Autism Findings

A new study finds 1 in 38 children have traits of autism. We’ll ask how that can be. And what it means.

In this January 2011 still photo taken from video, PBS newsman Robert MacNeil, right, plays with Nick, his 6-year-old grandson, at Nick's family's home in Cambridge, Mass. (AP)

In this January 2011 still photo taken from video, PBS newsman Robert MacNeil, right, plays with Nick, his 6-year-old grandson, at Nick's family's home in Cambridge, Mass. (AP)

Autism has had everyone’s attention for some years now.

There just seem to be so many kids with autism, and we wonder what’s going on. One in 100 or a 110, say U.S. officials, and that seems like a lot.

Now comes a new study — a big study, very credible, very deep — and it finds one in 38 kids with autism spectrum disorder. That is a truly arresting number.

But what does it mean? What’s behind the number? And what can be done about it?

This hour On Point: the lead author of the big new “1 in 38” autism finding.

- Tom Ashbrook

Guests:

Young Shin Kim is a professor at the Child Study Center at
Yale University School of Medicine and the lead author of the new study of autism. She’s a child psychiatrist and an epidemiologist who focuses on autism spectrum disorders (ASD) and related disorders.

Lisa Croen, director of the Autism Research Program and senior research scientist at Kaiser Permanente Northern California. She is the principal investigator on two on-going federally-funded autism studies. She is also co-investigator on the California Autism Twins Study (CATS).


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  • Tina

    A person whom I know very well has characteristics which I could describe extremely well. It took years for ONE psychiatrist to finally tell me that the characteristics I was describing were those of Asperger’s. I am SO grateful, yet envious, that there is such an explosion of information about Asperger’s. This is especially important for parents. If their child is not diagnosed early enough, not only does the child not get the new help that I understand is now available, but also, once the child is 18 years old, the parents are no longer allowed to enter into the therapeutic process!

    • Joshua Hendrickson

      In my case, my childhood oddities were not recognized (I grew up in the 70s) as belonging to a pathology, although they were noticed by everyone who knew me. I was articulate, an early reader, highly and originally creative, socially withdrawn, given to echolalia, slow to mature, and paradoxically at once shy around my peers and a bold stage performer. I didn’t date until I was in my mid-twenties, and although I have friends and family I often prefer to be alone.

      My daughter (she’s six) does not yet read, has limited and unusual speaking abilities, and is far more “distracted.” She is also sweet, happy, outgoing, and affectionate, for which her mother and I couldn’t be more grateful. I look forward to seeing how she develops over the years. I doubt she will ever be as “normal” even as myself, but I suspect she will prove a fascinating adult. With special help, she’ll get to wherever she’s going.

      • Brett

        Hi, Johsua.
        That is an interesting self-observation: “at once shy around my peers and a bold stage performer.” Also, you mention “echolalia.” I don’t mean to pry or put you on the spot, but could you describe the kinds of speech patterns you engaged in? I have always thought of echolalic language patterns, while not conventional, as being important forms of communication in that the expresser is still trying to communicate something. I once worked with a young man who would say, “please don’t squeeze the fish!” when he got upset. He may have not been able to say, “I’m upset about___” but anyone who knew him or had reasonable observation skills could tell he was upset.

        • Joshua Hendrickson

          My echolalia was (is) a compulsion to repeat, under my breath, words and phrases that either I or others have just said. I never had a problem expressing myself “normally” but the echolalia was not normal, and used to drive my friends crazy.

          • Brett

            Interesting.
            Thanks, Joshua. Would you say that it might be a way of processing what it is you’re hearing, a kind of mulling over the dialogue happening around you, including your own verbal responses? You also write creatively…I like to write creatively; for me, it affords me an opportunity to create environments and characters and process their actions and thoughts. I also am very attuned to the speech patterns of others, the dialogue I’m hearing around me. I sometimes engage in some form of what you describe, although absent is the compulsive part. I will repeat certain phrases I’ve said or heard from others to myself just to see what it feels like when I say it or repeat it. There have been times when I have been working out dialogue for certain interactions among characters in a story and seem to be engaging in controlled madness or something; at least I think sometimes this is how that might seem to others observing me.

      • Cory

        I also grew up in the seventies and had almost identical traits to those you mentioned about yourself. My clinical diagnosis was “Daydreamer who looks out the window too much”. On my worst days the diagnosis could grow to include “short attention span and not working to potential”. Kinda miss the good ole’ days.

        BTW, I’ve always had a job, I’m married more or less happily and pay my bills and raise my kids.

        • Nicole

          I also had the “daydreamer” label as a kid that nowadays would probably be diagnosed as ADD. I have a hard time staying focused on one task, but I am an incredibly creative person, so I don’t think it’s necessarily a bad thing.

          I also wonder if these things are truly on the rise, or are they are just being more readily recognized and given a name now, since our modern culture is paying more attention to mental and emotional disorders? Were there a bunch of “mad geniuses” throughout history who may have been called “eccentric” back then, but would have been given a diagnosis of Autism, ADD, bipolar, etc., if they had been born in our time instead?

          • crm65

            I think you may be right Nicole! My son is diagnosed with ADHD and PDD/NOS (not quite Asperger’s, not quite Autism, but on the spectrum) He is a loving, gifted child, but is unorganized, easily overwhelmed and distracted, and can’t take loud noises or scratchy clothing. He is a “loner”, but can be amazing insightful and wickedly funny. I don’t expect him to hold a “conventional” job, but my guess is he will excel at something artistically profound and will do well in the life he chooses. I am glad people now recognize that children with these types of disorders are valued contributors and should be mainstreamed in school. Even still, there are still those out there that consider them unnatural or a result of poor parenting. Try to walk in my or anothers parents shoes before making assumptions.

          • Joshua Hendrickson

            Yes, I’m sure of it. Take “underground artist” Henry Darger: if he wasn’t an Aspie, no one is.

        • Joshua Hendrickson

          I too have had jobs, relationships, responsibilities, but always with a certain level of difficulty. I’m hoping to get some help with it all.

    • Brett

      If a diagnosis is made before the child is 18 (of an intellectual disability), then he/she can stay in school and receive services until age 21. Parents can still “enter into the therapeutic process” (meaning, I presume, being privy to the specific details of his/her child’s treatment) until the child is 21. After 21, he/she can still receive services from the local human services board through adult services. Often, unfortunately, adult services in any given community pale in comparison to services provided by school systems. Parents can still be part of the “therapeutic process” in many ways; they just can’t breach doctor/patient confidentiality. Of course, they can (even still) get confidential information if they become the child’s guardian, which requires a court hearing (we are all competent unless/until adjudicated incompetent). I recommend this if the condition renders the person unable to function on his/her own in society.

  • Tina

    I am very friendly, long-term, with one person who has Asperger’s syndrome, diagnosed by a psychiatrist and confirmed by all the classic characteristics. This individual is brilliant and creative, but wasn’t able, emotionally, to “turn on a dime” years ago. His/her speech patterns were painfully inarticulate, yet elaborate, L E N G T H Y , and slow. Much later in adult life, this individual is both verbally fluent and truly socially adept. I know this person well: each incremental change along the way has ACCOMPANIED HIS/HER USE OF A FASTER AND FASTER COMPUTER! THE FASTER THAT COMPUTERS BECOME, the more the Asperger’s seems to only be exhibited by the Giftedness part of it, not by the deficit part!!!

    IS THERE ANY RESEARCH that explores this connection: individuals who were painfully slow and stumbling with their verbal expression, and awkward in their social understanding, who then later speak fluently, cogently, and with social awareness, once their COMPUTER’S SPEED CATCHES UP TO THEIR BRAIN SPEED?

  • Joshua Hendrickson

    Now 1 in 38? Jesus!

    My daughter is autistic. According to her teachers, I probably have Asperger’s. I don’t know for sure without a diagnosis, but it would explain a lot about my childhood and adult foibles.

    There are times I wish my child was “normal”, but I love her just how she is. And in my own case, I wouldn’t change a thing about myself. If I do have Asperger’s, I consider it much more of a gift than a curse.

  • Brett

    1) “Traits” should not necessarily prompt a diagnosis of autism 2) They only have significance, in terms of an actual diagnosis, if they affect/delay functioning/development. There has been a kind of tug between two camps in the clinical/human-service realm, lately: essentially, those who think the label of autism is always helpful in treatment, those who think it can sometimes be unnecessarily stigmatizing. I am torn…

    The DSM definition of autism has broadened in recent years to include Aspergers Syndrome in the spectrum, which I believe is a good thing. However, it’s not all raspberry scones and Devonshire clotted cream! There is the stigmatization issue; and, from a behavioral standpoint, it is not as relevant to treatment as is being touted in certain circles. If a child has difficulty filtering and prioritizing external stimuli, for example, then teach him/her coping strategies or ways to avoid problems in certain situations. This can be done whether a diagnosis of autism exists or not (a rose by any other name). On the other hand, there’s the funding stream sources in school systems/diagnoses labels issues with respect to Medicaid, etc. I.e., if you are poor (be it parent or school district), what are the treatment options for your son/daughter/students if not eligible for services (due to lack of a specific diagnosis attached to funding)?

  • Yar

    Does increased mobility in mate selection lead to more autism?
    Instead of focusing on the line that defines which side of the spectrum of life each of us lives, maybe we should focus on why we have such
    variability
    in thought processing in the first place. As a species that uses groups to solve problems
    variability is to the groups’ advantage.
    I wonder if autism is made up of recessive traits, but when an individual that carries DNA for the traits that define autism then the most desirable mate is someone who also
    exhibits
    those traits. Increased mobility would account for an explosion of the traits due to greater choice in selection. Like the red head that thinks other red heads look right. I believe there are physical attributes
    exhibited
    by those on or close to the spectrum and maybe those expressions affect mate selection. Simply being accepted may be one factor.

    I see the world from a slightly different perspective than most people. I could worry about being different, or I can celebrate that I may have something special to offer. I like this forum because it is like a coffee shop without so much of the noise that occurs in a public space. I label myself as being somewhere on the autism spectrum, I had learning difficulties and still find social situations awkward. I am direct and honest, traits I see as valuable in society. I think I have something to offer the world. All life is worth celebrating.

    • Cory

      Love and agree with your last paragraph, Yar. I’m still waiting for my almond mocha and pineapple danish, tho’!

  • Cory

    Oh c’mon! We all have SOMETHING in SOME amount don’t we? I’d be willing to bet I have some sort of A.D.D. and probably a touch of anxiety/depression. It seems to me that we are trying really hard here to create an epidemic that scarcely seemed to exist before Rain Man was released. Life is REALLY hard, sometimes almost unbearably so. I think all of this is an attempt to rationalize and justify the challenges.

    I’m not denying the existence of any of these conditions… I’m just questioning the usefullness of telling everyone that they have “something”.

    • Cbrown

      Cory – while I agree that many people have “issues” to deal with, and 1 in 38 seems high, but they are only saying Autistic traits, not that they have Autism. I can tell you that being truly diagnosed with Autism, means the individual has significant delays in language (both receptive and expressive), social Interaction, and other sensory and cognitive complications which makes navigating the “neurotypical” world virtually impossible without help. There is no question that the numbers of people in that boat is on the rise, and their needs to be answers as to why and what to do about it.

      • Cory

        No argument from me… I just hope we avoid the trap. If everyone has it, then no one does. I want those with problems to get help- real help.

  • Brett

    Where a diagnosis of “autism” has been most helpful (in observing this phenomenon over the last thirty years): recognizing the disorder in the severe range. Once upon a time this person would have just been labeled “mentally retarded.” Staff who work with such a person benefit from being told, “this person has autism,” “stay vigilant about putting this person in situations where sensory stimulation is chaotic and unpredictable,” “keep commands very basic, don’t over verbalize,” “use reinforcers to elicit good behavior rather than severe consequences to punish bad behavior,” and so on. It served to bring staff away from the mindset that the person for whom they were providing care was simply being recalcitrant/delinquent and needed severe punishment.

    • Cbrown

      Thank you Brett,

      You are right, labelling someone “retarded” sets very low expectations. But if someone has Autism, there are some common behaviors and challenges that need to be addressed and accomodations made so you put that individual in a situation that gives them the best chance to become a functioning member of society, which benefits us all in the long run.

    • Cory

      That seems a more practical and relatable use of the diagnosis than saying 80 million Americans are autistic.

      • Brett

        I know! I looked around the room yesterday at the other 7,999,999 people in the room and felt they looked and acted normal…it was a little unsettling! Then I realized I was the only musician in the room! (Okay, maybe not a “boomshakalaka,” but maybe a “boo-yah”?) Seriously, though, if any of these types of studies can’t prompt practical solutions, then what good are they, really?

    • g, Buffalo, NY

      I think that anyone who works with children need to do all those things, all the “good” things, instead of “bad” ones like positive reinforcement instead of punishment.

      It’s teachers that need to be changed, not the children.

  • Christa

    I often wonder if there is a link between the rising rates of Autism, (and ADD, and also the skyrocketing rate of food allergies) and our modern food system. These days we ingest so many processed Frankenfoods that are chemically preserved and packaged in potentially unsafe plastics. Even a lot of our “natural” food is tainted – produce is genetically modified, meats have antibiotics, etc. Could a whole generation of people eating this way for many years have an affect on the babies born to that generation?

    • http://www.facebook.com/profile.php?id=1408098372 Mari McAvenia

      Excellent question, Christa. Hope it is answered in this segment. “You are what you eat” is a fine rule of thumb for adults but what about human babies?

    • Tina

      Christa, I was lucky enough to get to go to Sicily in about 2006. It seemed to me that just about everything we ate there was from local farms and was made at each restaurant when you ordered (i.e., there were no raviolis waiting to be cooked, they were MADE once someone ordered them!). Wine, olive oil — everything was from SICILY, not even from other parts of Italy. THEREFORE, Sicily would be the PERFECT PLACE TO DO A RESEARCH PROJECT on your thesis! I WISH SOMEONE WOULD!!! Thanks for raising the topic!

      • Brett

        That’s an interesting idea; set up research in a region where processed foods are not part of the general population’s diet. Control for cultural factors, diagnostic techniques, etc., and see if there are less incidents of autism in that region.

  • Marty,BrentwoodNH

    If this program mentions the prevalent myth that vaccines cause autism, I hope you will invite David Gorski of Science-Based Medicine to contribute his scientific opinion too: http://www.sciencebasedmedicine.org/?p=12516 in which he says, ”
    the anti-vaccine movement is one of the most dangerous forms of pseudoscience, a form of quackery that, unlike most forms of quackery, endangers those who do not partake of it by breaking down herd immunity and paving the way for the resurgence of previously vanquished diseases.”

    • Tina

      You know, I don’t think that vaccines as the cause should be dismissed quite yet — not until there are additional, CREATIVE studies that would see whether or not the vaccination shot had something in it that PROVIDED THE CRITICAL MASS, if it were “experienced” ALONG WITH AN ADDITIONAL MATERIAL OR CONDITION to cause the Autism.

      I call this my “Critical Mass Theory”. In other words, have they looked at whether or not the mother had a shot of demerol AND the child had a vaccination shot; whether the mother had an extremely high temperature at 7 months into the pregnancy AND the child had a vaccination shot; etc., etc. I hope I have explained this well enough: perhaps ONE vaccination shot ALONE should NOT be blamed; but have scientists CREATIVELY — but realistically — looked at WHAT ELSE MIGHT HAVE JOINED WITH THE VACCINATION SHOT TO CAUSE THE CRITICAL MASS THAT THEN ALLOWS THE AUTISM?

      I hope you can see as well that I did NOT start counting up factors for this critical mass only once the umbilical cord had been cut. Due to this miraculous symbiosis called “pregnancy”, it COULD POSSIBLY BE that the initial PARTIAL CAUSES are administered to the MOTHER while the baby is developing inside her; then, the vaccine completes the critical mass, being given to the child alone.

      ARE THERE ANY STUDIES THAT EXPLORE THIS? MY AGE GROUP HAS MERCURY IN OUR DENTAL FILLINGS!!! Here is a possible study: mother has mercury fillings PLUS child has vaccination: are there different rates of AS in those children compared to children of younger women who never had mercury fillings (or even cavities, for that matter!)? How about the NEEDLES that are used; and I mean the needles that the mother may have received as well as the vaccination needle. How about the mother’s birth control history? Is there any factor THERE that could be the partial cause that is completed by the vaccine in the child?

      ARE SCIENTISTS THINKING AND TESTING WITH THIS KIND OF THINKING? If NOT, they should not yet dismiss the idea of the vaccination as a possible PARTIAL causal factor; altho I don’t know what individual families should decide to do about the vaccine because the risks are so great for those without vaccines, and apparently it affects the risk for the entire population. BUT, don’t blame individual parents for their decisions — especially those who may have AS in their families already — IF THE SCIENTISTS HAVE NOT BEEN CREATIVE, PERCEPTIVE, AND EXHAUSTIVE ENOUGH YET TO FIGURE OUT HOW TO TEST EVERY POSSIBLE VARIANT OF THE THEME THAT HAS VACCINES AS PART OF THE CAUSE! Maybe all this work has been done already; I do not know.

      • Marty,BrentwoodNH

        Scientists, who are often parents, think of these things too, in well-designed experiments, trying to think of anything at all that might refute their findings. The work has been done, and there are no good reasons to think vaccines cause autism, or that mercury in your fillings leaches into your body in amounts enough to cause a problem. (See quackwatch.org, or sciencebasedmedicine.org and search for any term you wish.) For example, ”
        No link between mercury and autism has been proven. If the thimerosal in vaccines caused mercury poisoning, the symptoms would affect all parts of the nervous system.
        Autistic children do not have the movement disorders and peripheral nerve damage that that are characteristic of mercury poisoning.” You can read about amalgam safety here:
        http://preview.tinyurl.com/amalgamSafety

        • Ellen Dibble

          I would postulate that mercury taken in by breathing could be a factor in gestating mothers. Silver-mercury amalgams are not the only source. There might be a felt factory down the street, or any number of other ways mercury accumulates, and by the time one is reproductive age, a mother might not even remember all the things that could have contributed to her body “load,” since the body stores rather than disposes heavy metals, as I understand it. A study could certainly be done to see if the mothers of children who have ASD have body loads of mercury or other metals that might influence the development of the nervous system.
          I think the studies on mercury symptoms might not be hundred percent. I am looking at a recent provoked screen for mercury which shows 77 micrograms/g creat, reference range should be less than 4, and I have almost none of the symptoms that the lab talks about, nor that the internet studies talk about. Other symptoms yes, obviously a function of what all ELSE I have. For that matter, previous chelation screens in the last decade do not give a clear idea that these screens can be totally accurate. But I am not a shaky Mad Hatter type. The biochemistry of a body that has an excess burden of heavy metals, in my experience, is quite different. Doctors are baffled, specialists are baffled. As I shift the metals out, different relationships to bacteria and fungi happen, fast.
          What effect this would have on a developing fetus is a question I hope they are asking. In fact, “the biomonitoring program at the U.S. Centers for Disease Control has a massive project under way that measures people’s exposure to toxic substances by assessing metabolites of toxins in their blood or urine. This gives a picture of what actually has been absorbed by our bodies, rather than what is in our proximity. This shift from measuring pollutants in our water, air, or soil to what has melded itself into our biology has led to related shifts in thinking about medical etiology and chemical risk.” That is from page 147 of Daniel Goleman’s book Ecological Intelligence.” Work has only begun, it seems.

      • Ellen Dibble

        The discussions around Robert MacNeil’s series revolved around this sort of thing too. Lots of people posted that children are exposed to not just one vaccine, which is a challenge to the immune system, but multiple vaccines. They point out that a child who has measles, mumps, whooping cough, chicken pox, German measles, and so forth will in most cases come out of the experience with a reinforced immune system, those being challenges that we have evolved to confront, pass/fail. But the vaccines provide the kind of challenge people thought was apparently not what a child is programmed for by evolution. Likewise a lot of the chemical toxins in the environment. Plus children do not have the same “challenges” or exposures that nonindustrial cultures in the past have provided. Somewhere I heard the example that mothers in primitive societies who breastfeed and then chew the food for their children, introducing many foods early that way, their children do not develop food allergies. The idea was that underexposure was the problem. Likewise too much sanitation has been suggested as a culprit in that children’s immune systems do not get to fight off bacteria that their bodies need to learn to deal with.

  • Marty,BrentwoodNH

    Seth Mnookin, author of The Panic Virus about the anti-vaccination movement, critiqued Robert MacNeil’s series for not balancing his daughter’s opinion that vaccine caused her son’s autism with the views of research scientists. See
    http://tinyurl.com/MnookinPBScritic

  • Salzburger

    Know more people that are affected by ADD and ADHD then Autism. Society would benefit more with this much attention brought to Attention Deficit Syndrome.

  • Ellen Dibble

    I just went through the Questionnaire, ASSQ, attached above, and note that #s 1, 2, 3, 4, 5, 11, 13, 15, and 18 I would mark as heavily influenced by parental training, maybe 12 (think racism for instance). 18 could also be parental training — to be obedient and not think things through. I mean, I could elaborate on all of those.
    Plenty of the others are not what I put “parental” but the ones I noted are certainly mixed. How is it scored?

  • Bill

    My son is 23 – when he was first diagnosed around three, rule of thumb was about 1 out of 250. 1 out of 38 is mind boggling.

  • Kim

    I’m wondering who funded this study. More specifically, was it fundedat all by drug companies who would make a profit off of autism drugs?

    • Soli

      Having just been in a discussion of the topic yesterday, I learned that there aren’t really any drugs given for autism itself. If someone gets them, it’s for another matter (depression, anxiety, etc.).

    • Anonymous

      There aren’t “Autism” drugs. You may treat some symptoms but Autism isn’t curable with drugs. My son takes Adderal for ADHD and Clonadine for insomnia, but we also use(d) behavioral modifications, OT, PT, speech therapy, and learning support before even starting on any drugs to help him concentrate and sleep. It made a huge difference in his and our lives. Don’t act like parents just run to drug as a first resort, usually it is the last.

      • Cory

        I wonder how much pharm companies make from adderal and clonadine every year?

    • Cory

      Never a bad idea to “follow the money”.

      • Anonymous

        Don’t really care – they help my son more than you will ever know and allow him to excel where before he foundered – don’t be so closed minded or dismissive of things you have never lived through

        • Cory

          I’m not being close minded or dismissive, I’m being suspicious of drug companies and medical professions that will benefit from a tidal wave of newly diagnosed cases of autism. I also don’t agree with you that you should only express opinions on things which you have direct experience. That is a very limiting criteria.

          • Anonymous

            So many people seem to think parents just throw their kids on drugs to make it easier on themselves. You would not believe the comments you hear about what a horrible parent you are because you medicate your child. In my case, we worked for YEARS on behavior modification, setting goals, providing constant structure and teaching proper manners and adherence to societal rules before we began his medications which help my kid to sit and listen rather than wander around the class and be disruptive and finish his work. It also helps him go to sleep before 3am because he was so wound up.

            The medications help him concentrate and go to sleep at a reasonable hour. All this has provided him the ability to excel, grow and advance to his full potential. My son is polite, does well in school, has a few friends, and will go to college. To me that is a success.

          • Anonymous

            You are so right that people who haven’t been through this with their kids really have no idea. I am ending my first 18 months trying to work with and help my son (who is not on the autism spectrum so far as we can tell, but has other cognitive and neurological issues which complicate his schooling and general life. I hope I can say what you have in a few years about him.

            It is so hard to sort through everything, get a reliable diagnosis (or diagnoses) and then figure out what supports and treatments really help. The past year just dealing with it has taken a huge chunk of my family’s time. I am very grateful to the parents who have gone down the road before me who have shared their experiences.
            Thanks.

  • Tricia

    One of the things that disturbs me about the tone is that the symptoms are ‘BAD’. My family is rife with Dyslexics – called a disability as well. But we are engineers, phDs, unbelievable creative, artistic and yet, we have difficulty learning to read and are slow at it. The trend in the culture to define a mythical norm and deviations from it is a bad disability is a value judgement that is mistaken. If you go to MIT, you will find that the vast majority of students are on the Asburgers, Autism, sensory, or dyslexic spectrum. Makes us fantastic engineers. Every ying has a yang and stop making judgments that are negative.

    • Anonymous

      Huge difference between having dyslexia and some form of autism.

      However I agree with you. I was called stupid by teachers in elementary school due to my reading and writing problems.

      Nonetheless I had a lot of friends and was pretty normal kid.

  • Gary Trees

    I like her. What a gracious interviewee!

  • Rex

    Are there any findings as to what may cause children to be born with autism?

  • Pete Anderheggen

    Question. I have heard that a ‘shyness gene’ has been discovered. Is there any relationship between extreme shyness and autism?

  • Toofar2travel

    How are the screening results to the survey analyzed? If a child has ten or more “yes” answers or “somewhat” answers to the questions does that conclude that the child has autism?

  • Jennifer

    I know autism has been associated (controversially) with infant/child vaccinations. I’m curious about the vaccination schedule in South Korea. Is it similar to ours in the USA? Significantly different?

    • DropItAlready

      This purported “association with infant/child vaccinations” has been thoroughly debunk and appears to be based on falsified data.

    • Anonymous

      Andrew Wakefield was a fraud. There is no link whatsoever in vaccinations and autism.

  • Anonymous

    1 in 38? That’s a huge amount of people with some level of Autism.

    This does not make sense to me in context to what I grew up with.

    I mean don’t remember knowing anyone with Autism. I knew people with learning disabilities, such as dyslexia (I have this) and what we now call ADD, but not Autism. How is this now something that is becoming so prevalent? Is it diet? Chemicals in the environment?

    • Bluesnpolitics

      You probably just didn’t recognize ASD when you were younger. I work with children over the summer and a number of them have some form of ASD, but they all are very different.
      I know a kid that I thought was just strange and awkward that turned out to have Asperger’s. He wasn’t diagnosed until his mid teens.

  • Jon

    The diagnosis of autism is based on the
    Diagnostic and Statistical Manual of Mental Disorders (DSM), but that assumes that the DSM clearly and accurately defines a disorder. There was a very compelling and interesting article is Wired magazine (december 2010 by Gary Greenberg) discussing the controversy over the DSM, and it’s every changing definitions. Perhaps the definition of ASD is too broad…

    • kathy

      I worked in a psychiatric hospital for children in the late 60′s. Most of the kids were diagnosed as autistic. They were very different from the asd kids I worked with in the last couple of decades as a school psychologist. I wonder also, if we used the diagnostic criteria for autism from decades ago for the same kids we use the current DSM diagnostic criteria, what would the difference be in kids qualifying?

  • Chris-Plymouth

    I remember in the 1990′s kids were being diagnosed with ADHD left and right. A couple of years ago bipolar was the diagnosis du jour. Is autism simply being over diagnosed?

  • Chilla

    I’m curious to know if this is a side effect of large, crowded, and urban societies, or simply a heightened awareness of “abnormal” behaviors because of the advancement of psychiatric science. Certainly there have always been members of our communities who are socially awkward or crippled, but function just fine.

    I wonder what the results would be in small, rural communities, and “3rd world” countries? Is it the same percentage of spectrum children? Is it handled differently without clinicalization?

  • http://gregorycamp.wordpress.com/ Greg Camp

    What about the cultural differences regarding looking others in the eye? In America, that’s regarded as being honest, but in other cultures, it’s seen as aggressive or impolite.

    • Chilla

      Good point. The autism tests are developed by Western clinicians for Western clients. Even subcultures of American society might display “autistic” behaviors because of how they interact normally. For example, in a nearby inner city town, there is a high Jamaican population of young students, and looking someone in the eye is not considered polite (and therefore very uncomfortable for the students in school). How did this study account for cultural differences in behavior?

  • unconvinced

    What if social interaction deficiencies are somewhat amplified by the more limited amount of unstructured time in Korean schools? Is it possible that children with “mild” symptoms or even simply timid, might be expected to have more difficulty developing social interaction skills only because they have opportunities and time to practice.

    • Ellen Dibble

      There was a study circa 1966 by someone I believe at Yale that showed from almost infancy children can be categorized as shy or outgoing, restrained or social, something like that. I think the name was Katz or something like that. I can’t recall the split, what percentages, but I believe he figured out that shyness is like facial characteristics, permanent from the start.

  • Ellen Dibble

    Several years ago there was a news flash in Newsweek or Time Magazine, stating that research showed that girls get their brain wiring that makes them more empathic than men from their fathers. Though the trait is not expressed in the fathers, a father lacking the gene (or whatever it is) could not pass that to his female offspring.
    I am trying to square this with the research I’m hearing about today.

  • Fred

    Lisa Croen is saying that Americans are better at diagnosing AS disorders. That would only RECENTLY be true. Many American ADULTS went undiagnosed as children, even if they are as young as 28-30.

  • Anonymous

    Doctors have created a vaccine to prevent autism, but activist parent groups are blocking it as they think it causes measles.

    • Anonymous

      Intriguing, where can I learn more? Reference?

  • Jen Farquhar

    Some would argue our modern diet, full of sugar, corn syrup and junk carbohydrates feed harmful microorganisms in our digestive tracts. Our guts are further damaged by overuse of steroids, antibiotics and birth control pills. The pathogens release toxins that pass through our leaky guts and into our kid’s bodies giving a variety of psychological and behavioral symptoms, including autism. Dr. Natasha Campbell-McBride, a medical doctor in England with postgraduate degrees in neurology and nutrition, cured her son’s autism with diet. She runs a clinic in Cambridge and treats patients with autism, dyspraxia, A.D.D., A.D.H.D, depression, schizophrenia, etc. Her book is called Gut and Psychology Syndrome.

    I am successfully treating my own daughter’s symptoms with this diet. She’s not autistic but her symptoms included anger, aggression, paranoia, hallucinations and obsessions. She has followed this diet for 5 months now and her symptoms are gone unless she accidentally eats the wrong food. She is now doing very well.

  • Sofia

    My daughter’s first grade class had three children later diagnosed on the autism spectrum and two others with ADHD–in a class of 22. I was a substitute teacher one morning. Those kids were not exhbiting “normal” behavior–they were standing on desks, jumping around the room, crying, rocking or twirling. Regular classroom teachers are overwhelmed by the number of autism spectrum children, and there are insufficient resources to assist the children to learn new coping mechanisms. Parents have sued the public schoolls for not being able to provide appropriate education. There is not enought money! Special education is a phenomenallly large percentage of the overall school budget. Nobody’s listening!!!

    • g, Buffalo, NY

      How are you going to distinguish between children who just act out and didn’t learn discipline and autism!?!?!?!

      That’s my problem.

      EVERYONE wants to classify those kids as problematic and sign them off to someone else.

    • g, Buffalo, NY

      How are you going to distinguish between children who just act out and didn’t learn discipline and autism!?!?!?!

      That’s my problem.

      EVERYONE wants to classify those kids as problematic and sign them off to someone else.

    • Anonymous

      Schools’ usual response is inappropriate. Our laws and schools are black/white; a kid is either “normal” or is pulled into a special class full time (exactly the wrong thing to do).

      Schools give kids “enrichment” classes for music, math, and so forth. ASD should be treated the same way, with an extra class in social skills and without all the legal and social baggage that so often comes with “special ed”.

  • Ellen Dibble

    It intrigues me to think of individuals with the full spectrum of emotions but without the full spectrum of tools to use them interpersonally. It seems to define a motivation for what I think @Cory describes below as craving to be on stage, something like that. One needs to interact through abstraction (art) if not realtime, something like that.

  • Chris

    I feel that the statistics cited (2.64% prevalence of ADS) really and truly need to be broken out. Classical autism, Rett’s syndrome, Asperger’s, and CDD are serious (and stigmatized) conditions. The question is whether the bulk of the 2.64% are in these serious (and somewhat obvious) conditions, or whether the bulk fall into the PDD-NOS diagnosis.

  • Boston Emily

    I was diagnosed with NVLD (non-verbal learning disability) at 37 and have been floored that it hasn’t been classified under ASD. I started questioning whether I might have something similar to my stepson (he is 8 and diagnosed with Asperberger’s and ADHD) because I saw a lot of the same social challenges in myself that he faced. I would be very interested in your guest’s view on this.

    I would say that I don’t believe this is a new epidemic. Folks like myself and my stepson were always on the fringes, but so were other kids that didn’t do well in social groups. My guess would be that the lower functioning the person, the more likely they would have been classified as mentally retarded or just plain crazy.

  • Karen

    As a mother of a 14 year old girl on the spectrum, I find that girls are under diagnosed. They tend not to have the outbursts as boys do, and instead turn frustrations inward. Because they tend to have higher social skills than boys, they often go under the radar. Even when I brought ASD to teacher’s attention, they dismissed me, even after I received a formal diagnosis, teachers still would not give me any accommodations or acknowledgement.

    I fully agree that a student does better in a school environment that
    is more structured. I was surprised how much better my daughter did
    when we went from a school of 150 children to 400.

    I am concerned about depression, self mutilating behaviors, and eating disorders that girls with ASD often exhibit.

  • Ellen Dibble

    Someone below speculates, @Chilla, about more concentrated regulated cultures leading to education that nudges toward autism. I’m thinking high-functioning ASD is more conformist, and less foible-like. So.

    • http://gregorycamp.wordpress.com/ Greg Camp

      Yes, the questionnaire does favor conformist children. From my observation, this is typical of psychology in general–groupthink equals healthy.

      • Ellen Dibble

        But I thought in this instance, groupthink equates to autism. At least up to a point, which fits well into the Korean educational system, but not so much in an American school full of misbehaving as a social modus operandi.

        • http://gregorycamp.wordpress.com/ Greg Camp

          I mean the psychology attitude toward “misbehaving,” not the American cultural view.

  • ss

    I am wondering whether the researchers have a prediction about the effect the proposed changes to the dsm v diagnostic criteria for asperger’s will be. I have a son with asperger’s/HFA and support the new criteria because I think more kids would be diagnosed but I know this is somewhat controversial.

  • Pete

    As a longtime engineer, I submit that a little autism is an evolutionary advantageous adaption to an increasingly complex and technological society. Autism allows the focus on the task at hand required to solve difficult technical problems. Isaac Newton was probably autistic. So it is not an “epidemic”, but an evolutionary response to the demands of modern society. I would be interested in a comparative study of autism occurrence among a less modern society (if one can be found) like the bushmen of the Kalihari or south sea islanders.

    • Kelpriest1

      What if, instead of an evolutionary adaptation, it is a trait that is becoming more prevalent in a society that is more complex and technical? what if it is becoming more prevalent because suddenly, guys like you, with your big, logical, systems-oriented brains — who also fit the broader autism phenotype — are valued more by society in a new tech era? Now YOU guys are making the big bucks, attracting mates, and procreating more than I bet you all did in the hunter-gatherer & farmer past. Starting with the space race, you guys with pocket protectors have become hot tickets!! Ha ha!

    • guest

      agreed! wish people would stop describing it as a disability but rather as a set of traits that may provide an advantage or disadvantage depending on the circumstances.

  • Ellen Dibble

    Say you’ve got a mother who is a mis-fit for the child, or put another way, a mother who doesn’t really know the difference between what she would like the world to be like and what it really is. One of those let-me-define-it-for-you types. It’s confusing to the social workers, not to mention confusing to the child So the child will repeat words to the mother, but not speak his or her mind. The child is speechless except by command. On the other hand, with the foster parent, the child has a workable set of words, and functioning body language. Sign language. What is that? A child at risk?

  • Cambridgemom

    What about television and computers? Children as young as 2 learning by looking at a screen. No wonder they have trouble socializing. We should look at the environments we are creating for our littlest humans and ask if we are creating a generation of children that can not function, and then look at our schools and ask if we are educating in a way that is increasing this diagnosis.

  • Kathleen

    In Robert MacNeil’s report one of the scientists interviewed reported that there were genes found in the DNA of the children with autism that came from neither of their parents. Is it possible that autism is in some way a form of evolution of humans? A wild thought but how else to explain the appearance of new genes in their DNA.

    • Ellen Dibble

      As I recall from 50-year-old biology classes, mutations can occur because of environmental stressors. Consider certain populations under stress, fish, frogs, which, if they do reproduce, reproduce defective offspring, not for Darwinian reasons, but because the reproductive cells, sperm and ova, had what I’ll call environmental wounds. Mutations. In thinking about autism, I consider that a woman’s ova are actually completely formed when the woman is born, so her reproductive cells are created by, in effect, the grandmother’s bloodstream, and therefore by the environment in which the grandmother’s blood drew its components. What the grandmother breathed and ate and touched, all that, would be part of the genetic makeup of the grandchild.
      So I look to see autism cropping up two generations after the more devastating parts of industrial environment come to bear, whether that’s lead and mercury and cadmium and aluminum and such, or whether it’s the scrupulously devised chemical compounds that go into everything on the shelves.
      When I heard about the South Korea study on the news last night, I thought, bingo. There is a culture a couple generations into industrialization. What sort of regulations are in place? And I thought, Bingo, a society that is pretty rigid about demanding a pretty good subset of the behaviors and approaches to others that the test up top use to diagnose ASD.
      The two together seem to have led to the 2.64%. IMHO.

  • http://gregorycamp.wordpress.com/ Greg Camp

    PDD-NOS? That sounds like, “we can’t explain it, so we’ll put a label on it.”

    • Anonymous

      Really comments like this show your ignorance and dismissal of people with these issues – it just means that they have traits but not enough for a difinative diagnosis

      • http://gregorycamp.wordpress.com/ Greg Camp

        I’m dismissive of psychologists, not the people being diagnosed.

        • Anonymous

          Your comments affect those who get diagnosed by questioning the reasoning/believability of the people giving the diagnosis

          • Anonymous

            Children are not eligible for much needed services in school without a diagnosis – so having a diagnosis helps them

          • http://gregorycamp.wordpress.com/ Greg Camp

            That’s an illustration of what is wrong with our educational system. Rather than having class sizes that allow a teacher to manage individual children as they need, we dump children into warehouses. Some get “special” status if they score correctly (for good or for ill) on a standardized test.

            What we need to see is that we aren’t robots, so any unusual characteristic is not automatically a sign of defective programming.

          • Anonymous

            so wrong – most ASD kids are mainstreamed and only go to special classes during or after their regular school day

          • Anonymous

            Children are not eligible for much needed services in school without a diagnosis – so having a diagnosis helps them

          • guest

            not everyone on the spectrum feels that it is a disability, sometimes it is, sometimes it’s not…

          • Anonymous

            I wouldn’t say my son is on the diasabled-level – My son would say he is perfectly fine – but before he started to receive services he was doing horribly in school even with an above average intelligence and now is getting A’s & B’s. He now has a small group of friends where before he had none. His future looks bright.

            I also have a nephew Autism and I would consider him disabled – he will always need support.

            All kids w/ ASD are different and are affected in different ways – some worse than others – but to ignore or downplay the available resources because you, as a parent, won’t admit there may be a problem with your child or are worried about an associated stigma, is just wrong – if it will help your child fulfill their potential – how can that be considered a bad thing – don’t we all want the best for our children? If your child was sick, wouldn’t you try to get them the help they needed? My son does better in school and socially because of the help he received.

    • Ellen Dibble

      Pervasive developmental disorder, not otherwise specified.
      Be glad you don’t have it.

      • Anonymous

        I’m not sure he can Ellen

      • Cory

        Ellen, do you really not perceive the glut of “alphabet disorders” that have become all the rage over the past 20 years or so? How long will it be before disorders are personalized down to the individual level? My diagnosis would be OWUADDWLT. (Over weight underachieving day dreamer with laziness tendencies.)

        Dammit Greg!!!

        • http://gregorycamp.wordpress.com/ Greg Camp

          If you’re ever in northwest Arkansas, look me up.

        • Ellen Dibble

          I think the overglut of alphabet disorders probably parallels the overglut of medications that children have inflicted on them. In the last couple of years I have read that doctors are learning that more medications in order to make a child seem normal may not be good for the child’s actual chance at being healthy.
          It does surprise me though. When I went to school there were at least 40 in a class, sometimes 50, and as I recall everyone behaved, which is to say sat quietly until recess. Possibly all the children who couldn’t manage that were sent to reform school, whatever that was. But it seemed we were all excellent at sitting quietly, year after year. So it surprises me that smaller classes seem to have produced more behavior problems that end up getting diagnosed and medicated and treated.

      • http://gregorycamp.wordpress.com/ Greg Camp

        That’s my point–how can something be simply called a disorder without being specified? That sounds like, “you’re wrong, but we can’t say why.” In other words, it’s unscientific. Science requires defined terms and evidence for its conclusions, not vague feelings.

  • karen

    Has anyone studied the effects of higher television use among children along with computer use that is everywhere with children using at an even younger age than ever? Perhaps some of the disconnect has to do with less human interaction? That might explain the children who are on the lower spectrum of autism. What about mothers who no longer coo with their babies as much and talk on their cell phones?

  • Hannahmgrace

    I feel, it’s very similar to the way we understood and treated dyslexia and ADD in the early 90s. I feel as we learn more about autism we will treat and be aware as we now are for ADD and dyslexia.

  • Chev

    Listening to this program makes me think that all introverts have autism.

    • clgraves

      Not at all. Many people are able to gather strength from alone time, and this is how I see introverts. Some people gather strength from social situations, this is how I see extroverts.

      Someone on the autism spectrum can be either.

  • http://www.facebook.com/bailey0101 Michael Bailey

    For Guests: Do you think there is evidence of evolution here? Are humans becoming overly physical, overly social and underachievers. Is nature evolving us towards thinkers? This seems to be a common trait amongst Autism, social awkwardness yet quite smart. Nature knows what she’s doing…

    • Anonymous

      Evolution isn’t working towards a goal. Perhaps as our society becomes less and less community oriented, social skills are less essential compared to other traits but I’d be skeptical especially as social skills are still required to find a mate in order to pass along the genes.

  • Ellen Dibble

    The NewsHour with Robert MacNeil week of reports on autism a couple weeks back with a whole week of on-line conversations on the topic came up with the idea that autism is physical, is pain and physical dysfunction, which is hard to get at from a less than communicative little one. I am not hearing about the physical side of it today.

  • Katma20202

    So, is it on the rise or are we to understand we have always had this
    rate of ASD?

  • Robyn

    As an educator and a mother, I am excited that we are having this discussion! Autism is not one “thing” so it is difficult for many to understand. I have been to several autism training sessions and feel that I am just beginning to really understand what autism “is.” Thank you!!

  • http://gregorycamp.wordpress.com/ Greg Camp

    Here we go. Medicate or counsel any oddity out of every child. Label anything different as counterrevolutionary.

    Please read “1984″ or “Brave New World” to see what will result.

    • Anonymous

      You know Greg, you are really a piece of work – some of these “oddities” keep children from fulfilling their potential and diagnosing and treating help them

      You don’t know what you are talking about if you haven’t lived with it – keep your ignorant comments to yourself

      • http://gregorycamp.wordpress.com/ Greg Camp

        The same might be said to you. I’m not saying that mental disabilities should be ignored. My point is that too many are ready to label anything unusal as a disability or disorder, and often, the reason for that is that it’s inconvenient to the social system.

        • Cory

          Dammit Greg! I’m agreeing with you again. I think this is no different than a “colonel” or other homespun doctor in the 1870s selling an opiate elixir off the back of a stage coach to cure “baldness and the heartbreak of psoriasis”. Americans LOVE their bubbles. This is just an autism bubble.

          • http://gregorycamp.wordpress.com/ Greg Camp

            My operating principle is that I’m in favor of whatever strengthens individuals. I’m sure that I don’t always get it right, but that’s where I come from.

      • http://gregorycamp.wordpress.com/ Greg Camp

        “What a piece of work is a man! How noble in reason, how infinite in faculties, in form and moving how express and admirable, in action how like an angel, in apprehension how like a god! The beauty of the world, the paragon of animals! And yet, to me, what is this quintessence of dust?”

        As Hamlet observed, humans are complex, variable, and fascinating creatures. That being the case, efforts to force conformity on everyone is inhumane.

    • Jon

      Perhaps if you listened to Dr. Kim…because you obviously ignored that last thing she said.

  • g, Buffalo, NY

    I don’t think there is an increase in numbers.

    I think we are counting better/differently.

    It’s the same thing that happened to ADHD diagnosis in the 80′s. Psychologists expanded the definition of ADHD symptoms, and all of a sudden you have an EPIDEMIC!!!

    Which isn’t to say that I think that the teachers and schools need to change the way we educate our children. Each child learns differently. Teachers need to be more sensitive to each child’s needs and no label kids that doesn’t learn like others.

    • Bluesnpolitics

      There are commercials on TV telling parents to get their kids tested for ASD. When I was in school, Rain Man was the only thing people knew. If your kid didn’t act like that, why get them tested?

  • Elizabeth

    I haven’t read the study or seen the
    questionnaire nor am I a psychologist. However, I do wonder if in
    making the comparison between the South Korean study and the American
    rate of ASD, if cultural differences are considered in the responses.
    That is, what might be considered anti-social or aberrant behavior in
    one cultural setting might not be a ‘big deal’ in another.

  • Elizabeth

    I haven’t read the study or seen the
    questionnaire nor am I a psychologist. However, I do wonder if in
    making the comparison between the South Korean study and the American
    rate of ASD, if cultural differences are considered in the responses.
    That is, what might be considered anti-social or aberrant behavior in
    one cultural setting might not be a ‘big deal’ in another.

  • Anonymous

    The vaccine idea is a hoax. People need to stop believing in this.

    Andrew Wakefield was a fraud. There is no link whatsoever.

    http://www.npr.org/blogs/health/2011/01/06/132703314/study-linking-childhood-vaccine-and-autism-was-fraudulent

    • Cory

      Best practice is probably to use the scientific method to determine the truth. Too many people like to go on anecdotes, old wives tales, and hearsay.

  • http://gregorycamp.wordpress.com/ Greg Camp

    The guests need to speak to the many creative and inventive people over the course of human history who produced great works, but were considered odd.

    The caller right now is an example.

  • Megan

    I just hope that the medical community will finally understand how SEVERELY affected these kids are to certain foods they eat, supplements, odors and other environmental factors. I think genetics sets some kids up to be more sensitive to the above things. Find me one kid on the spectrum that doesn’t have a food sensitivity, food aversion or regular bowel movements.

    • Ellen Dibble

      If a child has what I’ll call industrial society syndrome, with all the symptoms of autism but symptoms which vanish when the offending chemicals and other immune system stressors and what not are removed, then that child is not autistic “anymore,’ simply less cockroach-like in tolerance of non-natural substances or non-natural amounts. I don’t hear about reversible autism that much, and maybe follow-the-money plays into this. If 1 in 38 is afflicted, one wants to be part of a chronic treatment team. One doesn’t want to be brought up short finding out that massive doses of vitamin C, ad hoc, when symptoms flare, is the cure, something like that. Where’s the profit in that?

  • g, Buffalo, NY

    If my child EVER! EVER! will be even tried to be diagnosed as ADHD or autistic, I would absolutely not comply with treatment or that diagnosis.

    I think it’s ridiculous!

    • http://gregorycamp.wordpress.com/ Greg Camp

      Good for you!

      • Anonymous

        ignoring doesn’t make it go away – my son is doing tremendously well because of his treatment, not in spite of it. The only one who would be hurt would be your child –

        • g, Buffalo, NY

          What if a child was just a difficult child with discipline issues? Those that could just be easily resolved with some extra attention and different teaching styles?

          Would you care to have that child be misdiagnosed by eager practitioners and be put on a treatment?

          No. No parent would. I was just speaking out of that fear.

          I am glad that your child is doing well on the treatment. What would you have done differently if he wasn’t diagnosed? Would you not have tried the same things as the treatment is doing? How do you know he couldn’t be doing better with other methods and techniques? If there were drugs for his condition, would you resort to them because he could be doing better, or is the way he is doing on the treatment good enough?

          All very tough choices for parents to make.

    • Sofia

      Don’t worry. It’s far more often the parents who bring the child’s behavior to the attention of the schools and psychologists, not the other way around. The child will be shuffled along in school and labeled a “real behavior problem,” or “lazy,” and it’s the parents who are begging for the school’s help. Nobody asks for this kind of diagnosis. And yes, you would do whatever you could to get help for your child. You would try a lot of things you never imagined.

      • g, Buffalo, NY

        Thank you!

        I guess I am just a worry-wort parent.

        We all want our children to be healthy and happy and it breaks my heart knowing that there are some kids who aren’t and there is very little that you can do about it. Sometimes I just want to hug the entire world population of children, give them all the love in the world and attention and care they (we) all deserve, to make their lives happy and problem-free. I think a lot of parents feel this way.

        Any topic that deals with our children is an emotional one, because it hits so close to the heart.

    • Researchgeek67

      Why, if your kid was having problems, would you deny him/her treatment that could make the difference between being able to learn and be fully part of the human community and being always isolated and apart? My daughter was diagnosed @ 15 months, has been getting intensive services for a year and now looks like a completely different kid. She now relates to and engages with people in a way we worried would bever happen. Why would you not want to do everything available to help your kid?

      • g, Buffalo, NY

        I would. That’s the point. Is that I would want to do everything that’s possible, but not put him on drugs.

        Being diagnosed/labeled changes, not only the way people react to the person, but the person himself.

        I am one of those people that believe that parents need to be involved in their kid’s lives, that providing shelter/food/clothes/toys isn’t parenting. But I also believe that teachers and school carry on a responsibility to teach my child and recognize that they may not be doing the best job possible.

        I think a lot of teachers are in that profession for the wrong reasons, just like doctors and lawyers and salesmen (or any other profession for that matter). But with teachers, that’s where it hits close to home. If a person doesn’t really want to teach and help and understand what significant weight lays on his/her shoulders, then they shouldn’t be a teacher.

        I also think that some kids are spoiled and act out and rude, but that comes from families and dealing with those kinds of kids makes teacher’s job harder and takes away from other kids in the classroom.

        But, I guess what I am saying, when I grew up, we had “difficult” kids, but I think if they were labeled, first the people around them would have simply have dismissed them and treated them with “don’t bother” attitude. And those kids themselves would have been like “oh well I am autistic and there is nothing I can do about it, so I am going to continue to act out and do whatever I want, because I can get away with it”.

        Sometimes a diagnosis can be a good thing, but, having that diagnosis, changes things? As a parent, you may better understand what’s going on with your child, but what would you be doing differently if your child wasn’t diagnosed? I would still do the things that are necessary for my child to learn and develop and try different methods and ways. The diagnosis wouldn’t change my job as a parent to be there for my kid, to be involved, to find ways to ensure that my child becomes a productive member of this society, that he/she is able to learn how to take care of themselves, etc.

        What I guess I was trying to say, is that if I noticed that my child was having issues, I would find ways to solve those problems, different ways of doing things, trying different things, etc. A diagnosis wouldn’t make a difference for me, as a parent.

        • Researchgeek67

          I agree about how a diagnosis or a label can become ostracizing and do more harm than good in some cases. And I definitely struggled over having a label/diagnosis applied to my beautiful child who was also a very happy and easy-going baby.

          The difference the diagnosis made for us as her parents is 1) to be more vigilant about the various kinds of “inputs” we allow into her environment than we might have been otherwise, and 2) the interventions have given us an amazing opportunity to learn hands-on a range of techniques to “reach” our daughter that are not intuitive, and that would probably have otherwise eluded us even in our best efforts to be involved parents and to do the things that are necessary for her to learn and develop.

          As just one example, we ditched nearly all her battery operated toys, because she loved them but would easily become so focused on them that she wouldn’t have room for any other interactions. We’re generally of the all-kids-are different approach, and so it might’ve taken us a lot longer to realize there was an issue without someone specifically noting that this kind of thing was actually interfering with her development.

          Example #2: She would often be so involved in whatever she was doing that she wouldn’t even look up when I came back at the end of the day, or when someone came to visit; when I first became worried, my mother-in-law would always say “oh, she’s just busy.” The intervention gave us specific techniques to help gradually modify her behavior to acknowledge, engage with, and emotionally interact with other people. A year later she almost always runs over with a big smile to give me a hug when I come home.

          In our experience the intervention has been as much about parent-training for us as direct engagement with our daughter, and we feel it’s made a tremendous difference. I realize it may sound from what I’ve described that she wasn’t that badly off to begin with, but I could give more examples, and the improvement has been amazing. Even with a deep commitment on both my and my husband’s parts to be very involved parents and to support her development in all the ways the experts say to (e.g., lots of verbalizing, interaction, no screen time), I doubt we would’ve been able to shift her trajectory without expert assistance. And we needed the diagnosis to get it.

      • curious

        I’d always heard you couldn’t accurately identify a kid with autism spectrum disorder prior to age two or three.

        • Researchgeek67

          @curious – It is often hard to diagnose in kids that young, she was given a “provisional” diagnosis and will be re-evaluated at age 3. symtoms included not responding to her name (no hearing probs), not pointing or gesturing, no interest in sharing objects (toys) or experiences with others, and having no words at all at that age, not even “mama.” I was especially vigilant b/c I have a friend with 2 kids on the spectrum, so was nervous about it. Although we had concerns about “labelling” her, the diagnosis allowed us to get 17 hours a week of therapeutic services (including speech therapy) from the Birth2Three program, without the diagnosis it would have been 3-5 hours for measured but not diagnosed delays. She’s made amazing progress in all areas, services are now focused on helping her interact appropriately with other kids in her childcare setting, in addition to language, communication, and joint attention.

    • Anonymous

      Yes much “help” actually makes things worse: labelling a kid as somehow wrong; cutting off most contact with peers; lumping the kid in with those unable to function no matter what. The baggage that comes with a diagnosis _can_ cause more damage than the original problem …particularly any “help” that pulls the kid out of their normal school class.

      But “appropriate” help (for example an extra class that teaches explicit social funtioning while leaving the kid in the mainstream) leads to more feelings of well-being and less depression. It’s unfortunate our laws and schools don’t make it much easier to supply this kind of help.

    • Marion

      When I had spent most of grade school (50 years ago, when autism never came up) in the “low” academic track, and then got the 2nd-highest score in the school on a standardized test, the teachers who knew me as as a quirky, solitary, socially-immature kid suggested that I be placed, for free, in a local ivy-league college’s special grade-school where I could learn more successfully. But my mother said no – she actually said she wanted me to be “main-streamed,” even though there was no mention of a diagnosis or disability.

      If I’m autistic, it’s a mild case, and I’ve found ways of dealing with it. I’m sure nobody who knows me now would imagine there’s a problem – in fact, most people think I’m a very social person. But I’ve always wondered, as I enjoy my daily telecommute from my solitary house, emailing for social contact… What was really going on when I withdrew from everyone all through my childhood? Why did I leave the family in the back yard at the age of 2, climb the steps into the kitchen, climb onto the bassinet, & sit there alone playing with bath toys until they noticed my absence? Why did all the neighborhood kids play in my yard & basement while I sat alone in my room and read? Why have I always seemed to miss what everyone else “gets” ?

      I’ve spent my life interacting as an actor, a director, an editor (ways to “interact” within limits), but rarely as a gal just hanging out with other folks. I wish there had been a way for me to get the treatment and social training I needed, back when my mother refused that transfer to the fancy school. I might have done more with my life.

      If you child is offered an opportunity, don’t reject it! If s/he is diagnosed with an autism-spectrum problem and help is available, take the help!

  • Joe

    This doesn’t surprise me at all. My son has Asperger’s syndrome. Thirty years ago, we would have said he was just a smart, quirky kid with social problems. But it would be a big mistake to lump in Asperger’s kids with autism generally, as the new DSM may end up doing.

  • guest

    It simply is not always an impairment! Please stop the calling people with Aspergers disabled because they communicate differently then people for whom subtle social cues are easily understood. Many of us feel happy and fine the way we are and do not feel disabled at all but instead lear ways to cope with weaknesses as all people do.

    • Cory

      A discussion can really get paralyzed if we get hung up on small things like differentiating between disabled, crippled, differently advantaged or whatever term. Try to interpret intent instead of word disection. It’ll be more productive.

      • guest

        I fully understand the intent. I’m sorry, but as someone on the spectrum who doesn’t feel disabled I do think it is very important for this perspective be explored when this topic is discussed. It never is.It’s not word dissection honestly, I just believe it is wrong to assume that everyone on the spectrum is disabled and that label can hurt people who would not feel disabled if they weren’t so labeled. I feel this is important. Hope you can understand that.

        • Cory

          Absolutely! And no disrespect intended. Thanks for responding.

  • Please vaccinate!

    Tom, the so-called “connection” between autism and vaccines was disproven, and in fact I’m pretty sure you had a show with the guy who wrote the book about the negative effects of parents’ failure to vaccinate their kids?

    My daughter is possibly on the spectrum (according to a child psychologist), and we’re dealing with the same frustrations that Karen mentions below at school.

    • Vermonter

      I guess you missed the head of the CDC acknowledging that there could be a link between the two, just saying…

      • Marty,BrentwoodNH

        The CDC’s web site does NOT say there is a link. It says, ”
        evidence from several studies examining trends in vaccine use and changes in autism frequency does not support such an association. Furthermore, ascientific review by the Institute of Medicine (IOM) concluded that “the evidence favors rejection of a causal relationship between thimerosal-containing vaccines an autism.” CDC supports the IOM conclusion.

        See http://www.cdc.gov/vaccinesafety/Concerns/Autism/Index.html

  • Amy

    @Tom – Did the study reveal the same inconsistencies in prevalence in boys v. girls as the current data does?

    • clgraves

      the boy to girl ratio in this study is 2.5:1 instead of 4:1.

  • http://gregorycamp.wordpress.com/ Greg Camp

    Conform to what is perceived by psychologists as normal. That’s scary.

  • Jillmiller

    I disagree that services need to be funded and provided through the public school system. Funding is stretched already. Why is the teaching of social skills the responsibility of the schools and not the parents or extended family? The researcher mentioned a 90 percent link to genetics. Perhaps the parents would benefit as well from seeking treatment from a licensed professional and attending joint sessions with their children. I think we default to the schools to teach our children everything…manners, morals, values, how to deal with stress. What happened to language, mathematics and science?

    • Had_it_with_ignorant_fools

      I was going to respond to your comment but then realized that your ignorance is so overwhelming that it would be like trying to have a conversation with a brick.

      • Sam Wilson

        Exactly, in today’s America, the only responsibility of parents is limited to drag their kids to school and at home provide all sorts of entertainment in the name of education… isnt it?

        God Bless America!

    • Cory

      You really can’t see how or why manners, morals and socialization are part of children’s education? Is art or music OK? Can they play at recess or are the taxpayers too stretched to pay for a swingset and a few kickballs? Oh wait, i forgot we might have to pay a lazy publicly funded teacher to supervise recess.

      • Sam Wilson

        Cory,

        I dont think that was Jillmiller’s actual point, she was trying to say, the manners, culture etc should be taught at home, and not something the school is obliged to teach, rather the schools should be more dedicated towards English, Math, Science etc.

        At the same time, kids who have any of these issues, can definitely benefit from Lic. Professionals and are publicly funded, and parent’s role in the aspect would help every one.. its not the idea that everything should be left to some public school teacher.

    • Gwennifer

      Schools can only do so much. At the end of the day it is up to the parents, if only we didn’t have two income families and live so far away from our extended families. I know first hand how connecting with your child on their level can go along way. My kid is so much like my husband and I, which makes it easier.Read a few autism blogs out there and you will get a glimpse of how devoted people are to helping there kids at home. I can make my house more comfortable, serve crunchy not chewy foods, by special cups and tagless clothes for sensory issues. Talk about answering and looking people in the eye and saying please and thank you. But school is where children spend their days with each other and I just don’t have that kind of access to teach peer relatednes.

  • Tina

    I know a story that is so parallel to the sad, sad story a caller is telling us right now. If the caller reads this later, please know that my heart goes out to you; that you were not alone in your story. Your bravery in calling in will be helpful to others, and you should be thanked for calling in to share this with the country! Your story is not sad because your child has AS; it is sad because the neglect of the educational community did not allow proper intervention; facilitation of your daughter’s giftedness; education of her peers whose behavior definitely needed intervention; and confirmation of your perceptiveness!

    The story I know of also includes the same perceptive, communicative parent being met by snarky, dismissive educators who made things even worse, rather than helping to facilitate an intervention program in a timely matter, so that other bad things happened into adult life. I truly believe that educators who act like this are criminally negligent. Every single one of them should be in prison! I’m serious! Their licenses require them to keep up with educational matters. At the very least, they should lose their licenses! But, in this case, the educators also allowed bullying to go on and on. Criminal behavior!

    I’m wondering if the caller is also from a town that only supports itself thru residential real estate taxes (i.e., no commercial money coming in). Some towns don’t WANT to help diagnose AS because they might be required to pay for services outside of the school system itself. Especially when there is only residential property tax money coming in, they might balk.

    My heart is with you; and I thank you for your bravery in seeking help and in helping others to hear your story;

    • Anonymous

      I too have had lots of problems with educators not being able to help …with issues that had nothing to do with ASD. Many of our teachers “just don’t get it”, despite the best of intentions and lots of training. Given what we (don’t:-) pay them, I’ve been forced to agree it wasn’t fair to expect very much of them.

      I had the opportunity to get to know a lot of my childrens’ teachers as a “professional” rather than as a “parent”. They were nice, caring people, many of whom were coping with fairly major life setbacks better than I probably could have done. Even so, when as a parent I asked for something quite specific, they were pretty much clueless. Handling ASD seems to be just one more thing they don’t get right.

  • Chev

    The last caller hit the nail on the head. Over history there have been many brilliant people who are socially awkward. There is nothing wrong with them. What is wrong is our society which believes that we need to label people as having a disorder because they are socially awkward and different.

    • Sofia

      And there are many socially awkward people who are picked on, bullied, beaten up, passed over for jobs and promotions and have a miserable life. Since society is not changing fast enough to accommodate “different” personalities, it is only humane to try to teach the “different” person how better to fit in. Otherwise we get Unabombers or people who may live under bridges.

  • g, Buffalo, NY

    Has anyone mentioned the fact that women are having children later in life now? I know that longer you wait to have your first child, the higher the chances that your child will be born with “problems”.

    Generations ago, human life span was shorter. Most people didn’t make it into their 50s. Now women are having children, for the first time, in their 30′s and 40′s.

    • Anonymous

      Actually, it is just that women are having their first child later in life. I come from a family with many generations of large families and my great grandmothers all had children in their 30s and 40s. So did my great-great-grandmothers. If you lived though childbirth, the timing of menopause has not changed that much, and in a world w/o birth control women had children through out their fertility.

  • Jakki

    The caller who called about the misdiagnosis of her gifted son has an important point! The more gifted a child, the less likely they will have “social skills” in an age-peer situation – place them with their intellectual peers, who could be professors, and I believe they will show “social skills”. When you are reading at a 10th grade level when you are in first grade, how likely are you to display acceptable classroom behaviour? Retreating into your head is probably more fun than trying to feign interest in what is going on in the classroom, or the doings of your classmates.
    It would be interesting to read the results of a study that took all these ASD children and gave them IQ tests. Our country doesn’t need to be spending special ed funds on gifted kids misdiagnosed as ASD – that money should go to enabling those children to meet their potential. If a child deviates from the “norm”, on either the left or right of the bell curve, that child deserve and should expect services to maximize their strengths.

    • Rainy

      My daughter is gifted and was in a program with her peers( as intelligent or more so) in grade school, but she still lacked social skills and still does an adult with high function autism…she needs to see therapists to train her to be independent,not a peer group of other gifted adults. Autism is real and it does affect choices that she makes and how she feels inferior,because she misinterprets social signals.
      Read John Robison’s book LOOK ME IN THE EYE ! IT’S AN EYEOPENER AND NOW USED IN CLASSROOM ACROSS THE COUNTRY

      • Belljennifer71

        @Rainy, thanks! I’ll get that one!

    • Belljennifer71

      A good number of kids with Asperger’s Syndrome are highly gifted in some areas. My five year old, when asked to “name some animals” on his IQ test, said, “Some animals are mammals.” He went far beyond the bird and dog, and expressed that he understands classification of animals. When he was asked to name body parts, he responded “Thorax and abdomen.” The tester rephrased the question, “Evan, what do you walk on?” He responded, “the sidewalk.” :) The therapist thought he was hilarious, and understands that he is much more intelligent than his peers.

      On the IQ test, there needs to be a “child gets it and then some” box to check. My son was technically wrong for the answers he gave. The test is not accurate because it doesn’t meet the child where they are. This same child started talking at eight months. Both of my boys are very gifted in this area, and both have AS.

      That said, I struggle to help them with social skills. The above child cannot reciprocate socially. He will answer my questions. He will ask questions about things he is interested in. But he cannot understand the social give and take. He cannot make eye contact. Yesterday I asked him to look at my face when he talked. He looked at me and covered his ears as he started to cry. He said that I was hurting his ears [by making him look at me].

      Both of my kids have very low processing speeds. My 6 YO’s is so low (2nd percentile) that they would not give him an over-all IQ because it brought his score down so low it was not an accurate depiction of his intelligence. Yet, 6YO’s problem solving is 180 (99th percentile), and his verbal skills are in the 150′s.

      When your kids are able to verbally identify shapes (point to an oval shaped mirror in Target and say, “Mama, that oval”) at 15 months, you never expect them to be mentally challenged in other aspects.

  • Jakki

    The caller who called about the misdiagnosis of her gifted son has an important point! The more gifted a child, the less likely they will have “social skills” in an age-peer situation – place them with their intellectual peers, who could be professors, and I believe they will show “social skills”. When you are reading at a 10th grade level when you are in first grade, how likely are you to display acceptable classroom behaviour? Retreating into your head is probably more fun than trying to feign interest in what is going on in the classroom, or the doings of your classmates.
    It would be interesting to read the results of a study that took all these ASD children and gave them IQ tests. Our country doesn’t need to be spending special ed funds on gifted kids misdiagnosed as ASD – that money should go to enabling those children to meet their potential. If a child deviates from the “norm”, on either the left or right of the bell curve, that child deserve and should expect services to maximize their strengths.

  • guest

    Tom thank you so much for this show. My 7 year old son was just diagnosed with high functioning Asperger’s last year. He is finally getting the treatment he needs after years of suffering and is a happy and more social child. However, even with the diagnosis, we still struggle with the school and medical insurance to get him the treament he needs and for financial help with his treatment. Studies like this will hopefully open the minds of medical and education professionals so that more children like my son will not get misdiagnosed or considered “just fine” and so their treatment is supported.

  • K.a.daly

    Tom, This engorgement of the autistic spectrum comes at a time when respect for psychiatry as a respectable science is low. Is this their Hail Mary pass?

  • Anonymous

    What’s “disabling” is determined by society’s response as well as by individual diagnosis. It’s for example up to society whether an individual is shunned as ASD or encouraged to benefit all as an “absent-minded professor”. In the extreme the “village idiot” was handled by the whole village. Just because the medical profession can offer a diagnosis doesn’t always make the individual unable to function.

    A relative relied almost totally on his wife for social connection; he would have been a loner without her. Should he have been an outcast, or is that just one way to use a marriage?

    • guest

      it’s also up to the person to determine if they are disabled or if they simply have strengths and weaknesses that they need to manage depending on the circumstances.

      • Sofia

        Not all austism-spectrum people have the capacity to analyze whether they’re functionally disabled or not. There are the piano prodigies who cannot dress themselves and need to be coaxed along to do anything out of a very rigid routine. There are math savants who cannot safely cook a meal and fail all measures of personal hygiene tasks. You can’t generalize. Nor can you assume that advanced capacity in one area of expertise means the person is capable of self help.

        • guest

          Diagnosis is sometimes helpful. I’m simply saying that not all of us considere ourselves disabled. Some do, some don’t. Anyone on the spectrum reading this forum probably does have the capacity to determine for themselves if it is disabling for them and people come to different conclusions. But since many on the spectrum don’t feel disabled it’s annoying to always be described that way.

          • Anonymous

            I agree it’s demeaning and unhelpful to have my diagnosis equated to “disabled” when I don’t feel that way. It’s sort of like the person who has plenty of fresh food and clean water, social stability and educational opportunity, and feels perfectly fine about life, being labelled “poor” by some development expert.

            I quibble though with the idea that anyone reading this forum probably has the capacity to determine for themselves if they’re “disabled”. I didn’t even realize there was a question to be answered until I was 40 years old. I just thought “everyone is like this; what’s the big deal”?
            When -with some outside help- I finally began to understand everyone was _not_ like me, lots of things about my life shifted dramatically.

          • Anonymous

            I agree it’s demeaning and unhelpful to have my diagnosis equated to “disabled” when I don’t feel that way. It’s sort of like the person who has plenty of fresh food and clean water, social stability and educational opportunity, and feels perfectly fine about life, being labelled “poor” by some development expert.

            I quibble though with the idea that anyone reading this forum probably has the capacity to determine for themselves if they’re “disabled”. I didn’t even realize there was a question to be answered until I was 40 years old. I just thought “everyone is like this; what’s the big deal”?
            When -with some outside help- I finally began to understand everyone was _not_ like me, lots of things about my life shifted dramatically.

  • Avi

    My son was diagnosed with Asperger’s Syndrome, so I’m certainly all for having better understanding, acceptance, and services for Autism Spectrum Disorder.However, I do not buy the results of this study at all. The researcher’s answer to the question of whether ASD is a qualitative or quantitative definition is telling – she thinks it is quantitative, i.e. anyone could have a little bit of autism in him. So we’re not really talking about the autism spectrum but about the human spectrum.A look at the questions in the questionnaire is even more revealing. (1) Is the child precocious – since when does being precocious means autistic? (17) lacks best friend – does that mean autism? (18) lacks common sense – since when being stupid means being autistic? Don’t forget that by definition, an IQ of 100 is the average, and half the population is below that – are they all on the autism spectrum? (27) unusual posture – since when are back problems part of autism? (25) is bullied by other children – since when is being victimized a source for diagnosis? Bullying means that there’s something wrong with the bullies, not with the victim.Sure, there are a lot of people with a lot of problems in the world, and surely we can always broaden the definition and include all these things as being part of the autism spectrum, but by doing so we haven’t done anything, by doing so we’re not being helpful but to the contrary.

    • Belljennifer71

      Hi! My sons also have Asperger’s. I could not agree with you more! My children have never been bullied, do not have unusual posture, and have fantastic common sense! My children also scored VERY well on their IQ tests… in verbal and problems solving skills, one of them was in the 180′s, the other in the 150′s. However, their processing was so low they would be considered mentally delayed.

      This “study” is an exploitation of the spectrum…

    • Gry65

      I wholeheartedly agree! With the wide definition of Austism Spectrum Disorders there is today, we all need to go back to our own childhood and rethink some of the criteria that make someone Autistic. Who didn’t find socializing and fitting in at school challenging at times? Who didn’t “obsess” about certain toys and objects as children? Who didn’t feel shy and hesitant to talk in a classroom setting? When my son’s public school wanted to label him Autistic, and “gave” him all the services such a child would get, and I refused based on the “ridiculous” protocol this public school went about setting it (me filling out a stack of hard to understand questiones school, a school psychologist observing him a couple of times in the classroom, and a teacher filling out a questionnaire, who later told me, “it’s a hard call.” Since when are teachers the ones to set such a big diagnosis? All the extra support that my son got had the opposite effect on him. He lost all his confidence and shut down. Luckily, I found a new private school for him, where he is happy and thriving today. Parents need to go in the classroom and follow their kids for a period of time, and they will see that the school system, with it’s high expectations, fast pace, tense and overwhelmed teachers, makes for a stressful learning environment for kids and grown ups alike. Our system today teaches to the top of the class, which results in many children falling behind and “checking out.”

    • http://twitter.com/pianosrule Anne Howland

      All due respect, but the way you state your opinion makes it sound like answering ‘yes’ to just one of the questions means the person has ASD. You’re missing the point that what the overall questionnaire is after is a minimum combination of multiple symptoms, not just one.

  • Pancake

    I agree with Megan and Mari McAvenia that more Aspergers may result from increased consumption of Assburgers (treated meat) and other environmental factors. People who posit “evolution” are reading too much fantasy science fiction. Evolution is a longterm proposition of at least hundreds of generations in a species as advanced as humans, and it would involve the early demise of millions of people possessing the predominate genotypes. Using the term evolution in this mystical way is both callous and ignorant.

    I have recently reviewed Michael Foucault’s writings concerning authoritarian discipline of populations via medicalization. Greg Camp’s comment on having the power to label would be relevant. As we moved from the absolute anchoring of power in the model of sovereignty of law we find contradictions increase as the powerful elites apply scientific research selectively.

    The “fault” of the abnormal individual (not useful to the elite) must always be localized in that person’s physiology, in order to protect the elite from liabilities, and the system that serves their accumulation of material wealth and more power from delegitimization.

    Who knows where we are headed now that we lack even bodily sovereignty; and now that illegitimate elites manipulate the implementation of scientific of scientific methods.

    • http://www.facebook.com/profile.php?id=1408098372 Mari McAvenia

      The Other is US.

  • Ellen Dibble

    I seem to have been blessed with a body that can shift from abstracted to totally engaged. Anybody who knows how to fall asleep has the same gift, but it seems to me there is more to it. Perhaps it would be helpful to the psychologists here to consider this. Robert MacNeil’s show pointed out there are numbers of children, including his own grandchild, for whom autism descended precisely when their vaccination occurred. In other words, they seemed genetically normal, but apparently their genes had something that could be triggered by the challenge of the “dead” viruses or something else. They were predisposed, maybe. There can be normalcy dormant within this dysfunction. Therein lies hope, if nothing else. I’m going to start another post for part II.

  • Ellen Dibble

    My next point about being able to shift from abstracted to engaged has to do with the stressed out immune systems in our non-natural industrial age. My own body tipped off the top of its barrel of tolerances during a decade working in what I’ll call a “sick” workplace, where the “fresh air” vent actually brought me furnace room air. I got allergic to everything, left that job, and in about 3 years, most of the allergies left, simultaneous with getting cancer. But for over a decade I had thrashed around the medical system trying to get help. I had an extremely “different” body, and it was reflected in a personality that dealt with this. It dealt with it from the perspective of a body that had been environmentally stressed since childhood, but this was not addressed by doctors back then, and mothers could only pretend, or deny, or something else. I was used to a weird body. I “acted” normal, but “engaged” from a skeptical distance. I didn’t resonate with the way others felt, not in their gut, not in their hormones, etc.
    However, I had inhaled the “sick” environment, and it had become part of my body, in the form of heavy metals, and I am currently, at age 64, getting that chelated out of my body, and the changes are significant, not least in knowing I am “like” others much more than before. I’ll try to describe that in part III next.

  • Brett

    My first thought in listening to today’s show: how did they conduct the study and how did they compile their data/what were the metrics that were set up and how were they scored? Essentially, the study utilized these: 1) a questionnaire for parents to fill out (anecdotal, subjective) and 2) Statistical “analysis” comparing prevalence in special needs populations to prevalence in “normal” populations. (in this case, it seems that means “adding to,” but I would have to look at the study more closely to make more of an informed decision. It seems Ms. Kim was attributing the increase in cases of autism to adding percentages perhaps not previously counted, i.e., data from the questionnaire.) It appears, there was no regard/control established for cultural factors. I believe this renders the study invalid, but I would need to look closer to make that conclusion.

    It took me a minute to overcome Ms. Kim’s dryness and statistical offerings (sorry, it’s just that I’ve heard from so many researchers in my life), but I felt I had to to give her views and research its full measure of respect. I focused on the fact that she conducted this research so she must be passionate about this area, as I am. Frankly, though, I found it a bit underwhelming. Her conclusion: better diagnoses means better understanding, better treatment…I can agree with this, though…

    Diagnoses, however, have their most value in 1) facilitating engagement with services, e.g., Medicaid funding, special education services, etc., and 2) Bringing some sense of closure and understanding to parents/care providers/teachers. Sometimes, the focus of proper diagnoses, medication, and so on, can get in the way of proper treatment in that it can take the place of practical intervention. I am a very practical person (as Cory astutely pointed out earlier–thanks, Cory!) Why not just take all of the “clinical” efforts in diagnoses and treatments, pack them in a cute little bag and put a bow on them, setting them aside for a minute to think in practical terms.

    From the callers, I heard a common thread of “my child has difficulty making friends…” Why not develop a methodology whereby they can be taught in a structured way how to make friends? Coping strategies can be developed, self-monitoring can be increased, teach the person how to cue properly off of elements in his/her environment, and so on. A lot of energy can be devoted to this area. And, hey, if putting your child on the Feingold diet works, continue it!

    When I, at one point, had to teach leisure skills, I broke down the required behaviors of leisure activities. What do we do at leisure? We are using sensory input to stimulate us, pleasure us, or calm us. We LOOK at something; we LISTEN to something, we TOUCH something; we EAT something; we SMELL something…in very controlled ways. It was easy to teach leisure skills using this lens. I always assess a person in terms of what he or she can and can’t do, so to speak, then I figure out the best strategy to teach in the area of “can’t do” and reinforce in the area of “can do.” I then have a plan; I don’t need a diagnosis to do that…

    • http://twitter.com/pianosrule Anne Howland

      Hello Brett,

      Where were you when my daughter was in grade school! Your idea of a methodology for teaching social skills is spot on!

      We tried so many things to try to get her to understand nonverbal cues and what her own behavior was costing her.

      At one point we thought we had a good approach by giving her horseback riding lessons- she is a natural with horses. We were hoping that she would be able to carry over what she learned about the sensitive natures of horses and exactly how you physically approach them so that they don’t feel threatened, etc. into her interactions with her peers. It just didn’t work. Maybe it was just not the right approach or maybe it was already too late for her- she was so angry inside.

      Every time l see a picture of her taken during her preschool years, I cry. She is very photogenic, and just pure joy shines out of every picture. Now she is angry, depressed, and completely discouraged at not being able to go to the college that accepted her but wouldn’t give her financial aid because of her HS grades. All this, and her SAT and ACT scores 98th, 99th percentile.

    • Ellen Dibble

      Brett, a few weeks ago on NPR, someone was saying something about autism, saying that basically everyone knows that autism spectrum means “inability to hang out,” and I was thinking of this when you write about “what do we do at leisure?” (And where were you teaching leisure skills…) Anyway, where I live, “hanging out” seems like a way of saying “we were sniffing glue” (or whatever age-appropriate equivalent). But taken in the larger sense, it seems to me that “being together,” without needing structured activities, games with directions, specific time blocks with objectives, that suggests that the individuals are taking the time to “read” each other, to enjoy each other, in a basic sense to absorb each other through experimentation and play, or simply by osmosis.
      So much of successful education is based upon creating little driven success machines, on drilling that sort of hang-out time out of a child’s experience. I’d think South Korea and China and Japan would be good examples of places where simply “being together,” hanging out, is considered actually dysfunctional. Why aren’t you obsessively focused on what we tell you to do? (And then I suppose they turn and say what’s the matter with you, why aren’t you having fun with your friends?)
      I asked right at the beginning of the thread how the questionnaires were scored, saying about a third were parentally determined — culturally and parentally. I didn’t hear an answer.

  • Ellen Dibble

    To continue on how an environmentally stressed, an immunologically overwhelmed body can distance itself from “normal” engagement, as a walking toxic dump (to exaggerate), I pretty much chose to move around in a kind of haze. I assumed to myself the kind of distance that a public speaker might assume in order to screen out what might interrupt the train of thought. I also knew the kind of inner computer-virus-scan that seems to pass as abnormal “being in their own world” among autistic children. If the brain (or computer) isn’t working, you leave it be for a while and see what surfaces. If it comes up empty, well, you tried. I could always connect if needed, but I’d quickly find that people tried to connect with me as if I were a lot more physically normal than I was. No one ever believed me, more or less. I remember sort of screeching, talking loud as if calling to somebody far away who would be able to connect — with me. The person beside me was not on the same wave length. Now, I can shift the way a car shifts gears. I caught myself doing it the other day when trying to describe something to my doctor. I got to a point that I thought he should apply to other patients, or the profession at large, and I looked into the distance and raised my voice just a tiny, tiny bit. But I think he knew what I was doing. (“Thinking that he knew” is at the heart of being a wholesome personality.) For one thing, I’ve described to him this shift, so.

    • Jen Farquhar

      Please read this book (revised in 2010) “Gut and Psychology Syndrome; Natural treatment for Autism, Dyspraxia, A.D.D, A.D.H.D, Dyslexia, Depression and Schizophrenia”. The author, Dr. Natasha Campbell-McBride, MD CURED her son’s autism and now treats other patients with behavioral and psychological disorders. Her GAPS Diet goes beyond the dairy and gluten-free diet used by many parents of autistic children. The GAPS Diet is designed to heal the lining of the digestive tract to prevent toxins released from harmful microorganisms residing in the gut from passing through your leaky intestinal lining. Check out her websites:
      http://www.gaps.me
      and
      http://www.gutandpsychologysyndrome.com

      • Ellen Dibble

        I am wondering if there is a chicken-and-the-egg situation with leaky gut syndrome. I think I had been allergic to Candida (in sweets and vinegars, anything with molds, like yeast, cheese) for a long time, but it was other environmental stressors that apparently led to such a case of leaky gut that I became allergic to all foods tested for, including some I had never eaten — except green pepper and I think it was squash. I think I stressed my gut because my liver and pancreas were overburdened from toxins.
        I can’t imagine how this would lead to a child age two to be triggered into autism by whatever stressors, virtually overnight, but I do know how the GAPS diet is used, with good results with children with autism. Personally, dairy and gluten are fine with me, thank goodness. I hesitate to weigh in on this forum, since there seems to be a great variety of physical mechanisms other than mine affecting ASD individuals. There are, however, enough similarities to get me started, however. As the local detectives say, “You might have the missing piece of the puzzle.”

        • Jen Farquhar

          The intestinal tract of a healthy person is lined with a thick band of beneficial bacteria (the “Good Guys”). We can’t survive without them! They help us digest our food, synthesize some of our vitamins, provide most of the energy to our own intestinal cells and provide the first line of defense against invadors. If the Good Guys are knocked down by: poor diet, repeated or long-term use of antibiotics, steroids, birth control pills, or a poor mix of Good Guys from Mom as baby passes through the birth canal, etc. the gut lining becomes leaky.

          Now, every day we ingest billions or trillions of microorganisms. Most are harmless and transient, some are beneficial and others are pathogens and release toxins that can make us sick if they get into our bodies. In a person with a leaky gut these toxins from the Bad Guys are able to pass right through the intestinal wall and circulate around our bodies affecting the brain. Even worse, they are able to set up residence in your digestive tract.

          Because your gut is leaky, undigested food particles are able to pass into your body where they are attacked by your own body giving you positive results on food allergy tests. Just because you didn’t test positive that day for gluten and dairy doesn’t mean they don’t affect you. If you took an allergy test daily for a month there would probably be a lot of variation in the test results from one day to the next.

          Please consider the GAPS Diet (Dr. Natasha Campbell-McBride) to heal and seal your gut lining to keep those Bad Guys and their toxins in the digestive tract where they belong so you can lead a symptom-free life. GAPS patients often have digestive symptoms, food allergy symptoms, low tolerance of sounds, light, noise and smell and a high pain threshold.

          • Ellen Dibble

            Thanks for continuing on this topic. At present, food allergies are not an issue for me, but I’ve noticed when I’ve been chelating heavy metals out of my body that it takes up to a week for the intestinal flora to reconfigure. Sometimes there is a several-day lag, sometimes no shift, but usually there is this shift, and the people who are along with me doing this point out that the body has huge numbers of microbes, and those are adapted to the particular environment of the body, and this seems to be the consensus, that plenty of probiotics are part of this shift.
            It may be that the GAPS diet is useful for practically all ASD individuals, but it seems that I am nowhere on that spectrum, but rather, may have similar causative factors if those factors are toxins, at some point prebirth or postbirth. I have been allergic to dairy and wheat and everything else, and have been repeatedly screened for gluten, and have followed the diets where you eat totally different food groups each day so you only hit a similar food about once a week, which prevents reactions. Thank goodness I got past that. At one point I was noticing that following the blood group diet, Eat Right 4 Your Type, of Dr. Peter J. D’Adamo, which had me living on mostly hamburger, was helping some joint and muscle issues, but not nearly as much as approaching issues as toxins within my body, specifically heavy metals. I also discovered that putting detox foot pads with tourmaline in it on any body part that was hurting would stop pain almost immediately, but that is Band-Aid treatment. Anyway, I think leaky gut might be related to the gut trying to do more than it was designed to do. Anyway, I’ll check out that book, but I think my doctors, over 20+ years, who diagnose gluten problems frequently, would be know that. Anyway, I don’t eat gluten. Maybe a couple times a year.

          • Jen Farquhar

            Many alternative doctors know about this book. Regular doctors either don’t know or are waiting for big, well funded studies. Sadly, most studies are only funded by those with profit in mind such as the food and drug industires. There’s no profit to be made from homemade soup and other whole foods. Dr. Campbell-McBcBride’s GAPS diet is based on the Specific Carbohydrate Diet successfully used in the early 1900′s to treat Crohn’s Disease

            This diet can be very tasty. I encourage you to try it. My 14 year old is like a different child now.

          • Ellen Dibble

            It seems to me any child would be “like a different child” with foods free of additives, based on the wholesome foods people ate before the modern era and extensive processing. I think I eat pretty close to what you describe, partly because I’m old and don’t eat much anyway, so what I do eat has to be very healthy. I find unsweetened soy milk and carrot juice are essential, and powdered green powder and “red” powder, as a backup. These would not be part of anyone’s diet book, and it’s hard to get them totally unsweetened. But the result is probably similar to wholesome, nonprofitable nutritional diets, except easier to prepare. I live without a car, and with very little extra time or extra energy, so I take advantage of things that diet books can’t include. Carbohydrates seem unnecessary as one ages; one needs some source of fiber but less and less of the rice-calories.
            I haven’t finished thinking about the implications of leaky gut in autistic spectrum children, but it seems that going gluten-free and casein-free (which is in salad dressings besides milk) practically takes some children off the spectrum altogether. What I’m looking for in that respect is an explanation of why that is so effective for those particular symptoms (social adjustment, as I understand it), and I have a few wild directions to speculate in, but that’s all.

  • Brett

    Sorry for the paragraph spacing; it happens when I copy and paste (I’ve lost a few comments doing otherwise). Thanks, DISQUS, for “improving” things around here!

  • Guest-22

    To the commenter who feels parents should “train for morals and manners at home” and not burden the schools: You have obviously been fortunate not to have an autistic child. Parents DO teach their child how to have manners and morals–for example, not to masturbate in public, a common behavior among autism-spectrum boys and girls because it is self-soothing. Parents may teach the child to do this only in the children’s bedroom, when alone. Yet in school, this behavior pretty quickly stigmatizes the child, whose own bedroom is unavailable.

    Regular classroom teachers are not trained to handle the great variety of behavioral differences and challenges autism-spectrum children may present in the classroom, nor do they, frankly, have the time to figure out just what will help in any particular situation (while the rest of the 20+ kids wait for their lessons in math and science).

    There is tension among those who want publicly funded schools of special education and those who believe mainstreaming kids with special needs is always the way to go. Because parents must work and also send their child to school, the schools are legally obligated to help parents educate children of all kinds. It is not defaulting to the schools, it is that the whole community is helping to educate and aid individuals to become contributing members of society.

    By law, all children are entitled to a public school education. If a child has a chronic medical or psychiatric disorder, they are still entitled to be educated. And the parents are required to send the child to school. Surely the parents would benefit from seeking treatment. Many, many cannot afford it. Private therapeutic schools can cost upward of $65K because of their highly trained professionals and because of the individualized education each child needs.

  • Gry65

    My view is very different. When the school wanted to diagnose my son with Autism and ADHD, I went into the classroom and observed what his school day was like, I questioned the way he was diagnosed: me, his mother filling out a stack of booklets, a school psycologist observing him a few times, and the teachers observation. I later found out a medical diagnosis would cost me between $3,000 and 5,000 to have him diagnosed. When I removed him from this public school setting, he is now thriving in a new private school. He told me the stress and fast pace in the public school made him shut down. We really need to look at the way these children in US schools are being diagnosed. Being labeled with Autism is not something to be taken lightly.

  • Gry65

    My view is very different. When the school wanted to diagnose my son with Autism and ADHD, I went into the classroom and observed what his school day was like, I questioned the way he was diagnosed: me, his mother filling out a stack of booklets, a school psycologist observing him a few times, and the teachers observation. I later found out a medical diagnosis would cost me between $3,000 and 5,000 to have him diagnosed. When I removed him from this public school setting, he is now thriving in a new private school. He told me the stress and fast pace in the public school made him shut down. We really need to look at the way these children in US schools are being diagnosed. Being labeled with Autism is not something to be taken lightly.

  • Sbvp05

    I am a “mentor” for a recently diagnosed ASD 14 year old. Diagnosed with borht Schizophrenia and by another MD with ASD. At UCLA this child was diagnosed with ASD. He was previously diagnosed as ADHD when he first entered school. The medication he is on resperidone and a BZD klonipin is often given for both Schizophrenia and ASD, the former medication is a Dopamine antagonist the opposite of what is given for ADHD (example ritalin) I am confused what is going on with our ability to properly diagnose these dysfunctional social and learning disorders? When the treatment ie. medications have opposite effects, are we just guessing? Is the ASD diagnosis another catchall with very unclear prognosis and contradictory treatments?

    Recently I read that a related disorder Fragil X in some cases is responding to the use of an antibiotic, and the article suggested possible treatment for ASD. What if ASD and ADHD and even Schizophrenia are the result of some sort of epigentietic gene expression due to environment factors or infections at critical periods?

  • Brett

    I have seen many private “therapeutically-oriented” schools whose specialty is working with people with autism. Many have a corporate model and often don’t measure up, therapeutically speaking. Many make their money off of contracts with public schools, i.e., the kid gets removed from public school because of behaviors, etc., and then the private schools make a profit by how quickly and effectively they can get the student back on track, proclaim them ready to re-enter the public realm, and go on to the next customer, er, student. It’s a racket. Some private schools are good, usually only wealthy people can afford those, though!

    • Ellen Dibble

      Brett, do you know about children who are diagnosed with difficulty in dealing with sensory stimuli, rather than ASD, children who pull back and don’t take in the world, social and otherwise, because of something about the internal wiring? I met a mom of such a child, and she was going to graduate school to learn how to treat this, which is apparently a very rarefied specialty, with only a few people really good at it. But from what I’m reading here, it seems a child with “processing” problems would appear ASD but the parents might prefer to call it a sensory processing difficulty. It seems that there are approaches to the behavioral difficulties, under the diagnosis of autism, but the specialized treatments for the sensory issues might be underlying the other issues, or that is what this particular mom determined. There was no mention of autism at all, just the sensory overwhelmed bit.

      • Brett

        Hi, Ellen! My professional success, as it were, years ago, regarding helping people with sensory input regulation, was predicated on the idea that “call it what you want/are comfortable with but attempt to develop strategies that address a person’s inability to regulate sensory input…that’s the important part.” I’ve seen patients who had difficulties with sensory input who were not autistic, and I have seen patients who were autistic and also had sensory input problems; and, in a few rare cases, I have seen people with autism who didn’t seem to have much difficulty with prioritizing/filtering sensory input. Early intervention can go a long way in teaching a person to compensate for the “faulty wiring,” and when a person, let’s say, acts out in a given environment, it is wise to see this as a form of communication rather than a discipline problem. The “detective” in the care giver/teacher/clinician needs to emerge at this point to see if 1) Can the environment be manipulated to accommodate the person? 2) If not, can the person be directed to another environment? 3) What strategies for coping are within the person’s capacity to acquire? And so on…When I first met (when she was a little girl) with an autistic woman for whom I have been an advocate for a long time, we went to Denny’s for breakfast (she supposedly liked the food and shiny picture menus). When we got there someone was celebrating a birthday with balloons and such. My young friend had a complete meltdown. Through just a little investigation, I found out the balloons had been the trigger. I have never found out if it was fear of having them pop, their color, texture, visual loudness or what, but I learned that balloons were to be avoided with regard to activities with her. Not all “strategies” are as tidy, but a little cueing and pre-activity investigation went a long way. Also, thankfully, she is not affected by the presence of balloons in adulthood! Is that the result of some of my early strategies, or did she just “grow out of it” or learn to compensate on her own? Did the circuitry finally link up right? I don’t know, but my strategies helped her cope at the time of trouble, I do know that.

        I’m not sure what you meant by, “the specialized treatments for the sensory issues might be underlying the other issues.” Can you elaborate on what the “mom determined” specifically?

        There are some disorders where, to use the balloon example, a person sees the color yellow and it represents a foul smell and not a visual annoyance (oops, I think I just revealed my aversion for the color yellow!). The “crossed wiring” thing can be found in a lot of musicians. Ever hear a musician describe colors in music? Shading? It’s as if he/she is describing work as a painter rather than musician. Some are not simply being metaphorical, they actually hear things in terms of something along the visual palette.

        • Ellen Dibble

          I think specialized treatments for sensory issues that might be underlying other issues, in the case of this mom/daughter meant something sufficiently complex that the mom ended up going to graduate school. The little girl, then about four, had trouble with speech, and as I recall it had to do with using her mouth (or I could be confusing that with another child I’m thinking of who had to be taught to use his hands in order to get the texture of various foods or his gag reflex would kick in, and had to be taught to use his mouth to eat, even before using it to speak). But anyway, both learned. I actually got to see the little girl, at a concert, very well-behaved, and apparently totally normal. So I don’t know what to say. The mom and I haven’t been in touch.
          I have to chuckle about your experiences. I am going to remember that you are asking about whether the wiring rectifies itself over time, for whatever reason, or can. I hope the musicians keep the crossed wiring you describe. So many variations can be advantages if people manage to grow up without being bullied for those variations.

          • Brett

            I see the “wiring” thing as being a particular fascination for me. The way I see it, the basic “trunk” lines are laid out when we are born (sort of like how the basic electrical lines are laid out in a new subdivision, before the houses are built). As we grow, certain synapses and circuitry get connected, and so on (like when, in the subdivision analogy, a house is built and cable lines get hooked up). I believe we can rewire to some extend, as well as lose wiring connections due to injury, illness, lack of use, etc.

  • Belljennifer71

    I read an article yesterday about this study. The article said they sampled kids from ONE area in S. Korea. I don’t think it’s a fair sampling. They needed to expand the boundaries.

  • Rev Brett

    Those are some pretty heavy medications the 14 year old you mentor is on! You raise a couple of good points about unclear prognosis and contradictory treatment, as well as prescribing medication being an educated guess. I’ll use the example of serotonin reuptake inhibitors…some medications (e.g., Paxil) are developed with the idea that a person with anxiety/depression has a brain functioning with serotonin levels being too low, others (e.g., Buspar) were developed thinking the aforementioned condition is the result of too much serotonin in the brain. If a person goes to the doctor complaining of anxiety/depression, the clinician is likely going to prescribe one type or the other (a guess), depending on his/her clinical beliefs/which pharmaceutical rep. visited his/her office that day. I’m distilling it down a bit, but not by much. This is where patients/patients’ loved ones need to be strong advocates and let the doctor know who’s working for whom!

  • Brett

    Sbvp05,
    My last comment was a reply to your last comment

    • Ellen Dibble

      Brett, you can edit your comments if you are on Discus, which it seems you are. I think this makes it inconvenient at WBUR, or for anyone getting e-mails as responses, because I don’t think the edits get forwarded. Posting once but simply adding to it as the show wears on seems to wear out the monitors, so.

  • http://twitter.com/pianosrule Anne Howland

    am the one who called in early in the show with the daughter you are responding to.

    First of all, to all those who have been putting the responsibility of helping the child overcome their lack of social skills: I have an elder daughter who is very outgoing, has countless friends, is often the person that her friends confide in with very difficult issues, & was very academically successful in high school, which led to a merit grant award of 4 years of 1/2 paid tuition at an expensive liberal arts college. My own childhood was emotionally barren with an uncaring mother and alcoholic father, so I vowed my children would never experience what I had. Instead, my younger daughter had a worse childhood then I had (at least I had friends) despite everything we tried to do to help her. My huge frustration was that once she started school, I couldn’t be physically there to see how she was interacting with other children. As I said on the show, I repeatedly asked for feedback from teachers, and only one, when she was a sophomore in HS, after a lot of insistence on my part, said that she is seen as a “knowitall” by her classmates. So please, think before you make such a generalization. I have been in constant chronic pain due to my own depression for years now, feeling the pain my daughter has had to endure. At the age of nine she was talking about killing herself.We DID try, and very,very hard, not only with attempts at helping her grasp on to how to read others’ body language and respect physical space, but with a speech therapists and psychotherapists, the latter not understanding what was really going on, so she is now reluctant to seek therapy.

    Anne of Middlesex

    • Tina

      Anne, I am quite confused, because I wrote THANKING you for what you said on air. Your story was very close to a story I am very close to. I usually try to re-read my posts before sending, so I am confused about how you read me to say that parents were at fault. I wouldn’t say that even as the very last thing I said — I would not say it at all! If you could write back and tell me which of my posts you were referring to (by posting time), as I posted quite a few pieces today on this topic. Maybe you could even cut and paste the sentence(s) that, I have to tell you, I’m so sorry you misunderstood, or that I wrote poorly. I was so moved by your call today, that my MAIN reason for writing in was to THANK YOU for your bravery and generosity in calling in, because your call will help very many other people. I am quite confused, and apologize if I said something that hurt your feelings, because, as I said, that is the last thing I would want, and I felt like you were speaking truths I have seen! I have been trying to protect certain identities as I write today, so writing has been a bit complicated for me today; but otherwise, I’m confused. I HOPE that you see THIS post!

    • Tina

      Anne,
      By the way, I think you are referring to my post which was written May 10, at 11:05 a.m. — the time will help you find it. But, in looking for THAT one, please don’t miss reading MY BEWILDERED REPLY TO YOUR LETTER TO ME, which will either be directly above OR below this one. Thanks!
      –Tina

  • Brett

    One of the problems with the ADD diagnosis is that many of the “symptoms” can also be attributed to depression. So, is it depression or is it ADD? Ten minutes in a psychiatrist’s office won’t get to the bottom of that!

  • Hml

    I disagree with Lisa Croen that because we have less stigma we are catching more of the kids on the high functioning end of the spectrum. There is so little help offered for kids who are high functioning that there is very little motivation to get high functioning kids diagnosed. Many parents feel their kids are better served without the diagnosis and instead attending private schools where the parents may have more leverage over the type of help their child is given.

    • Tina

      … Which doesn’t work because kids and their circumstances CHANGE OVER TIME. The atmosphere and help that worked in private school may not be available when the child goes to college, even if they go to community college and live at home. Suddenly, the child NEEDS tutoring help, or accommodations while taking tests or writing papers, but without the diagnosis, the college cannot provide these services. Well, in some cases the colleges can if the parents pay, but in other colleges, the schools cannot because there just are not enough tutors, etc., to go around, so the diagnosis is what provides access. Also, some parents who didn’t get their child diagnosed, also did not tell their child about their suspicion of the correct diagnosis. Try giving a kid a diagnosis like any on the ASD spectrum when they are old enough to have enough pride that they might feel ashamed and/or humiliated when they hear the news. (And EARLY, really good, therapeutic care based on a diagnosis might have prevented any tendency to feel ashamed thru a proactive program that guided kids towards a confident personal self-assessment, rather than towards shame.) They might distrust their parents: what else didn’t you tell me about myself, about our family? Not only that, but if the parent is really concerned, by then, that a diagnosis IS needed, if the child is over 18, most doctors will not even let the parents call to make an appointment for the child/family because of federal confidentiality laws. IF the diagnosis were given before the kid was 18, as was pointed out elsewhere, the parents can enter into some aspects of this new phase. Otherwise: nope; and then, if the child does NOT want to seek diagnosis, skill building, and academic accommodations, the parents will be sadly aware that the child is left without certain potential resources (and I don’t mean drugs!).

      Also, as I said, a certain sub-set of high-functioning females with Asperger’s become victims of sexual molestation and abuse. As the child gets older, without a diagnosis, the young woman, may miss out on certain targeted programs designed to help her with this potential aspect of her life. I’d say, let’s route for programs like this rather than worrying about over-diagnosis. Let’s take the specifics of what we DO know, from a very large set of VARYING symptoms, and plan and make available skill-building programs and peer-building programs. Let’s also make other people, including other students, aware of the variety of human expression. I’d prefer we be pro-actively designing helpful programs for individuals, families, and communities (for those on the Autism spectrum and for those who are NOT!) rather than fighting designation and diagnosis.

  • Hml

    I have 2 sons with autism. The oldest has full blown autism and the younger is not diagnosed. This is because I cannot access services where I live. So I completely believe the new study numbers. I also think there is stigma associated with autism diagnosis, and that there are parents who are terribly afraid of diagnosis and who know their child is too mild for formal and effective services.

    • Belljennifer71

      @cc70166bce757f8dfbfadaa1001fbd76:disqus , it’s VERY scary for those of us whose kids are on the spectrum, but not severe. My youngest (5) has been a pilot, in his mind, since birth. Everything revolves around flying… His father is a pilot, both commercial and military. His daddy will be the first to tell you that, if a candidate for pilot training does not fit into the cookie cutter, he will get booted.

      We worry that if his diagnoses of Asperger’s gets into our Tricare files (military health insurance) that he might encounter difficulty later.

      Most parents would roll their eyes that I’m thinking SO far ahead. But I know my son well enough to know that his desire to fly is not going away. At four he asked his dad what he needed to do to become a pilot. …and anyone who knows AS kids knows that they are single-minded when it comes to their interests.

      He needs OT for sensory integration problems. We’ve been homeschooling, but with our next move he will go to elementary school, and I’m hopeful for help there. Not sure what will happen if he has an IEP. :( He’s extremely gifted at the same time. Never thought my gifted kids might need IEP’s…

      • Tina

        Belljennifer71, I don’t know where you live, but maybe try to find out where the best clinical programs are at universities and/or university hospitals. The one guest was from Yale: I just heard that Yale has some of the best researchers on Asperger’s. Just see what kind of help you might be able to get from there. I have not yet tried this; so I cannot speak from direct experience. Also, if you ever know MORE about Asperger’s than your professional (doc, etc.) does: switch to someone different!!! Ultimately, I think that attentive parents DO know a lot about their own kids: use what YOU have observed to guide you when you seek help. Of course you want to know what you DON”T know; but don’t let any “professional” become dismissive of what your long-term knowledge has told you about your own child. Also, I once or twice found some websites or blogs written by “Aspies” (as they call themselves) from England. The information, advice, skills, precautions that they mentioned were excellent! I grew very quickly fond of these young adults who were sharing their experiences with confidence, but also with an awareness that they did have to be somewhat careful around certain situations. I wish I could give you the link, but I just found out that “Bookmarks” Don’t Last Forever (sounds like the title of a novelette!)!!!

  • William

    When these disorders are discussed, it sounds a great deal like my social circle of friends in high school. We were able to get along with one another, but rarely had the patience for nor required the approval of our intellectual inferiors. We didn’t need to play football or cheerlead or dress in ways that others would approve of. We were the geeks: we were the people who thrived on being different. And we amounted to about 1 out of 32 kids in my school…

  • Brett

    I’ve asked for this before, but a great show would be how the DSM was developed and all of the politics and professional wrangling that has gone on during the history of its development.

  • http://twitter.com/pianosrule Anne Howland

    Brett, there is a very distinct difference between the symptoms of ADD and depression. I advise you strongly to look these disorders up on the Internet on reputable sites.

    Ironically, my elder daughter whom I described as a high achiever and very well-socialized turned out to have ADD. We were reading a book about this disorder with our younger daughter in mind and realized that it was describing our elder daughter! I typed up all her teacher’s report card comments about how disorganized and distracted she was all through grade school and sent this to her psychiatrist. Just from those 7 years’ worth of consistent comments, the psychiatrist spent our first meeting already having diagnosed her with ADD, and she was immediately prescribed drug treatment, which in turn helped her to succeed in Jr-Sr High school and beyond.

    Depression is so different, it’s like apples-to-oranges to compare it to ADD. Usually, a psychiatrist requires a few visits to determine if a patient has Clinical Depression, which is characterized by an inner world of low self esteem and hopelessness.

    • Brett

      I was referring to distractibility, an inability to concentrate, concentration that is so deep absentmindedness can result, and so on…I wasn’t comparing ADD to depression, just saying that sometimes clinicians don’t put enough effort into investigation, and that SOME symptoms in one condition can be present in another. I’m sorry, but in the 1990′s I believe there was too much diagnoses of ADD in children and adults. In the example you gave in your experiences, it sounds like the psychiatrist took a wise approach in looking at the “7 year’s worth of consistent comments from teachers.”

      I have a broad experience with a lot of psychiatrists and various clinicians over more than thirty years (having been a MH counselor, Behavioral Specialist, County Case Manager, advocate and court appointed guardian); I’ve seen all that is good about modern psychiatry and all that is bad.

      Your definition of clinical depression is not so easy to determine of the person is non-verbal/has delays/deficits in expressive language areas

      • http://twitter.com/pianosrule Anne Howland

        Yes, I agree that my definition of depression is too simplistic, given that I have had it all my life with a number of very severe episodes.
        Now that I know your background, I also recognize our differences coming from me and my family members being ‘clients’ and your perspective as a professional, exposing you to the myriads of ‘exceptions to the rule’ and overlapping symptoms that you describe. I can understand your frustration.
        Remember how suddenly everyone had depression when Prozac was introduced and became known as the ‘feel good’ drug, accessible to people who really didn’t have true clinical depression? I had a friend who managed to get a prescription by convincing her doctor she was depressed, but what she was really after was its side-effect of weight loss.

        • Brett

          I wasn’t trying to imply that your definition was too simplistic, Anne, sorry if you read that into it, just that clinical depression can be tricky to diagnose sometimes depending on the patient’s/the patient’s loved ones abilities to articulate how they feel. I’ve seen clinicians get it wrong by hearing a description of a few symptoms in the initial consultation then pinning on a diagnosis and prescribing medication without testing assumptions. It would seem prudent to take at least two or three consultations to actually determine if either clinical depression, situational depression, or something else. This process can also be a valuable part of treatment; to teach a patient to become a good observer of ones self, to be a good historian, so to speak, of ones mental wellness, to learn to record data on ones self, etc.

          As you mention, some patients can also be somewhat manipulative, in that they may like the effects of a certain medication/don’t of others and describe symptoms accordingly.

          • http://twitter.com/pianosrule Anne Howland

            The problem my first psychiatrist had with me was that having grown up with depression, I had learned to put a ‘happy’ mask on my face because as a child I thought I had to to fit in. He almost came to the conclusion that I did not have clinical depression.

            At the time, I was hospitalized (postpartum)- one of my symptoms at home with my newborn was that my legs became paralyzed- I had to lift each one off the bed with my arms in order to go to the crying baby. I had no mothering instincts-I remember I just wanted to shut her up. Then I went to the hospital and met this psychiatrist who saw no sign of depression on my face. Amazing.

        • Barbara

          I beg to disagree with you about weight loss being a side-effect of Prozac. I took Prozac for 15 years. Had I starved myself, I would not have lost weight (quoted by my internist). I gained weight and could NOT take it off. When I stopped taking Prozac the pounds fell away and I was able to maintain the best weight for me.

  • http://twitter.com/pianosrule Anne Howland

    William, I would say the same about my high school years; however, I was depressed and didn’t know it & had, like everyone else those days, unenlightened parents. If it were today and I had caring parents, I would have gotten the treatment I needed. As it turned out, I was not diagnosed until I was 32 years old.

    You sound dismissive of all the various new diagnoses in the mental health field that have been cropping up… The way I see it, these disorders, some of which are severe enough to affect a person’s entire lifetime (along with those they live & work with), are finally getting recognition, resulting in earlier intervention, which is critical for success in the adult world.

    • William

      @Anne Howland: Yes, I’ll admit I’m a bit dismissive of _some_ of the new diagnoses in the mental health field, particularly those that aim to ‘correct’ geeks from being who they are. Yes, I struggled with depression from time to time, but I got through that (with the help of a professional once or twice) and grew to be a successful IT professional. I can’t help but feel that some of these ‘diagnoses’ are akin to young homosexuals in the 50s and 60s (and sometimes later) being diagnosed as having a ‘disorder’ because they didn’t share the same values and interests that popular society told them was ‘normal’.

      • http://twitter.com/pianosrule Anne Howland

        I understand your point of view; however, please remember that the whole mental health arena has been stigmatized for decades, so the research that is now uncovering what has always been present in the population was denied funding. This is critical to understand. The reason depression has such a head-start in research and drug development is that its symptoms are relatively clear-cut and that it is common enough that MD’s were experiencing it in their own families.

        Also, please realize that each person’s experience of a mental health disorder is different due to childhood experiences and degree of parental or family support during the person’s formative years.

        I was also an IT professional before I became disabled with the pain, so I suspect you may have an impulse to want a black-and-white explanation of what all of this is about. Unfortunately it’s the nature of the mental health beast to be full of gray areas.

        • William

          I do understand that these disorders exist (my wife is a first grade teacher and I’ve met some wonderful kids who do need treatment to adapt to the trials of life) and we do need to ensure funding for additional research. I suppose I’m approaching this from the other end… if we’re too eager to categorize our brightest and most intelligent people because they don’t socialize in the same way or have a different interests in socialization with others as having a disorder that needs to be treated, there may be a backlash against the diagnoses altogether, even in situations where it is warranted and proper. With numbers like “1 in 38,” I’m concerned that we’re entering into the realm of misdiagnosing people and, essentially, calling ‘Wolf’ where there is none. That can do very grave harm to further research and funding for that research.

          • http://twitter.com/pianosrule Anne Howland

            As soon as ADD & ADHD were introduced into the realm of recognized disorders, it seemed like every child had it. My psychiatrist, however, believes they are UNDER-diagnosed (his opinion, I’m not so sure myself). I was quite prejudiced against children popping pills until it came to my own front door and my elder daughter was able to turn her life around with the help of medication.

            There will always be misdiagnosed patients, also a huge part of the mental health world, due to the nature of beast we call the human brain. But I don’t think that there will be enough cases of these that they would affect the broader realm of research.

          • Tina

            William, when a child is repeatedly rude because they just don’t understand their tone of voice, or the context of what they have to say, they can find themselves stigmatized and alone. Many kids with Aspergers yearn to have a best friend; many had great friendships when they were much younger (like age 4 and 5). The daily trials and accumulations of these kinds of events — let’s just say ONLY the “rudeness events” — piles up. The guest from Yale said that there is a QUALITATIVE difference in some of their social interactions. This IS what I have observed, and it is PAINFUL to watch people’s reactions to the child or children.

            We are not talking about the radical thinker who believes something so outside the box compared to “the bourgeoisie”. I recognize what some of the parents writing into this blog are experiencing. Parents are also often blamed, especially if rudeness is one of the major characteristics when the child interacts with the world. “The apple doesn’t fall very far from the tree.” THAT statement is SO painful for parents to hear, because, meanwhile, they are often BEGGING for help in getting an understanding or a diagnosis, but they get blamed instead.

            There was a movie about a young adult male with Aspergers. That was a start in letting people know what the condition MIGHT look like. The trouble was, the young male’s Aspergers was a little bit stronger than what is true for many kids whose Aspergers is BARELY DETECTABLE. Believe it or not, the kids with barely detectable Aspergers are the ones who might have very hard lives because they get no understanding from others; they get blamed for behaviors they cannot help without intelligent intervention; and they are very often denied that intervention. Talk about vicious cycle!

            I do kind of wish that the experts had talked about this kind of stuff instead of statistics, but the NEWS really WAS about the statistics. Maybe OnPoint could do a couple more shows, perhaps; maybe a series of shows devoted to the various diagnostic categories along the spectrum! OOOOh, I just realized, I want to say, ” P L E A S E ! ! ! ! I would help so many people As it was, as I’ve said before, a lot of the callers really shared in ways that will help people!!”

        • Tina

          Anne, please read my post from the day AFTER this day from the show about prescription drugs. I write about the painful condition called spondylosis, which affects many people who work at desks (I’m guessing that your IT job had you at a desk & computer all day.). I give some suggestions. Maybe you will find them helpful — I hope so!

  • Grlwthprl

    To the woman who called from VT, we share a lot of experiences. Feel free to contact me at grlwthprl@aol.com. I might be able to share resources.

  • Lenn M Snyder

    Tom
    Is your guest aware of the correlation of Autism and chemical trails. Chemical trails are chemicals dumped out of tanker planes and form the long lines in the sky that fan out into long cloud formations. THEY ARE NOT contrails from high flying commercial jets. Chemical trails and the increase in Autism started about the same time in the late 70′s and early 80′s. This is an explosive connection that our government does not want exposed. I challenge you to investigate! You just might save the lives of a lot of kids and folks that are dying of cancer.
    Lennmsnyder@yahoo.com

  • Janie Hoey

    Your program was interesting but as a Mom who has raised an autistic daughter for 18 years I really didn’t hear anything I didn’t already know…including that autism is on the rise… we need to focus on where and what these children will do when they turn 18 to 22 yrs of age when they are no longer covered by a school system….could you do a show that will bring government/state officials on to address these issues

    • KaitCalys

      I couldn’t agree with you more. I work with Autistic adults (all 21+) and having worked with my clients for several years, my biggest concern is not that Autism is becoming more prevalent but how we’re going to help and support these individuals when they are adults. The public is becoming more aware of Autism in CHILDREN but there is very little awareness about Autistic ADULTS. And let’s face it–all children will eventually become adults.

  • lori

    This is a fascinating study with results that come closer to my experience as an educational autism consultant/school social worker than the commonly accepted US statistics. My own son has Asperger syndrome. He is now 31 and has overcome or outgrown most of the disability aspect of this disorder, and now is a very interesting young man who is comfortable with his own differences. Had ASD been better understood and accepted/tolerated when he was in elementary and secondary school, he would have been happier. But we forgive the teachers because they were not well informed. Fortunately for our son he is part of a large accepting extended family and so has been able to grow up knowing that his unique traits are appreciated, not rejected.

  • Sharyn

    I read that Autism may be a new genetic MUTATION. This would seem possible given the continually increasing rates of ASD. My older son has Asperger’s Syndrome. Unable to reach you by phone. The auto comment was to leave message if you have the contact person. Thanks for interesting show.

  • Stavritsa

    Is there a cultural difference in South Korea in how the population views Autism- is it viewed as a disorder? In the United States having a child is stigmatized and parents are often reluctant to have a child with a diagnostic label..

    • NEone

      Dr. Kim mentioned this and acknowledged that it is true in Korea–not just for autism, but for all psychiatric disorders. I remember seeing a program a few years ago about Sang Mook Lee; it seems that any disability is something people are ashamed of and they tend to stay sequestered away. Sang Mook Lee returned to his work at an oceanographer/geophysicist in spite of societal norms.

  • KaitCalys

    I think we really need to remember that its no just children being diagnosed with Autism but adults as well. I work with Autistic adults, ranging in age from 21-61, and it is incredible how many of my clients were diagnosed after the age of 21. Which has to make you question whether Autism is becoming more prevalent or has our awareness of Autism increased and therefore it is being diagnosed more?

  • Canatc1

    What do you do if you suspect an adult of having ASD?

    • KaitCalys

      Speak to your doctor about the concerns, ask them to refer you to a neurologist and find an organization or agency in your area that provides support for Autistic individuals and their families. Try the Autism Speaks website to find helpful resources: http://www.autismspeaks.org/community/outreach/index.php

  • D_Schultz

    Didn’t we used to just call this shyness?

    Thomas Edison and Albert Einstein exhibited many of these same traits as children. They both preferred to stare out the window and daydream instead of paying attention in class or interacting with the other children. If they were enrolled in a modern school would they be medicated or singled out as “special needs” children so that they could be taught to “fit in” to society?

    Most human progress has been made by people who didn’t “fit in” to normal society, who heard the beat of a different drummer. Leave those kids alone!

    • Rachel

      Some people believe Einstein may have been autistic. And if I am correct, I don’t think he liked school because teachers couldn’t understand why he didn’t “fit in.”
      Just because children are diagnosed doesn’t mean we want to change the child, rather I believe it would help change the caregivers’ point of views. Don’t you think we can better help students/children if we understand their diagnoses? Don’t leave kids alone – help them be the best they can be. Help them find the skills where they can excel.

      • D_Schultz

        In modern schools the unusual children are singled out for treatment in order to ease the teacher’s workload, not to help the child find his special skills.

        To claim that one child in 38 has this “disability” is absurd, and trivializes the trials of the very small number of children who truly suffer from Autism, who cannot connect to the outside world in any way at all. Giving psychological treatment or medication to young children just because they have few friends or are unpopular or are bored by their class work is highly misguided.

        The woman who phoned in because her daughter had few friends and was beaten up by the other children is a case in point. Her daughter is not the one who has the problem; the so-called “normal” children who think that it is OK to beat up on her daughter are the ones who need psychological treatment.

        The main purpose of high school is to beat the non-conformists into submission, to make them respect the social pecking order with athletes and cheerleaders on top and bookish nerds on the bottom. This is done to prepare the young child for life as an employee in a soulless mega-corporation where original thinking is not tolerated, where “social skills” and “sucking up” are more important than technical knowledge, and where your job is to tell the boss how brilliant he is, even when he is not. Bullying is tolerated and encouraged by the school administration as a way of showing social non-conformists what will happen to them as adults if they don’t learn to fit in to the social order.

        The most interesting people I know tend to look back on their high school years as a time of total hell. Those who reminiscence with fondness about how high school was the best time of their lives tend to have very boring lives today. “It gets better” applies to more than just the gay kids.

    • DB

      Although I believe that autism is real I also seem to be getting the idea that being shy has become unacceptable in our society–and may lead to the “diagnosis” of something abnormal that needs to be corrected. I believe my mother and I were on the “shy side” but she led a productive life as a wife, mother, grandmother and elementary school teacher and I believe my life has also been fine. Additionally I believe it is possible that significant numbers of young people are becoming over socialized.

      • Tina

        And, DB, perhaps you would NOT have been diagnosed as being on the spectrum. From the individuals whom I’m aware of, “shyness” is not exactly the word that I would use to describe their Asperger’s, although “somewhat non-social” would apply to two people I know; tho both are not “shy” at all when they do interact with others. Someone on this page mentioned a “knowitall” quality that she was aware of. That is a word/phrase I would DEFINITELY apply to several of the individuals with Asperger’s whom I know. Rather than shyness, I also observed a tendency to NOT ask other people about THEIR experiences, their feelings, but, instead to hog the conversation in an extremely “dense” way with no entry space for anyone else to enter into the conversation. Also, I’ve observed a tendency to not necessarily care about other people even when close to them: i.e., no effort to buy a birthday card, etc., altho a card is expected FROM the person. Also, sometimes I observed a social aloofness that really went something like this: the Asperger’s person was invited to a party; seemed to have a great time; but had absolutely NO interest in reciprocating by hosting a party; and had no interest in inquiring how something of interest to the party hosts turned out over time, etc. Again, I’ve heard it said that if you know one person with Asperger’s, you know one person with Asperger’s. I know several people, and these are a few of the shared qualities, altho I have observed radically different qualities in the males than in the females, tho I will not mention them here, except to mention, once again, the sexual exploitation that’s possible in SOME females with Asperger’s. The other thing I noticed in two of the people I know with Asperger’s is that when they got computers that worked with REALLY high speed, that some of the overall Aspergerian qualities seemed to lessen or disappear. My thought is that scientists should DEFINITELY STUDY THIS — is it a broad-based phenomenon? My other thought is that people with Asperger’s may have brains that are RACING WAY FASTER THAN NORMAL (even IF they exhibit slow, sometimes stumbling speech, as I’ve seen), so that when they have a computer that CAN KEEP UP WITH THEM, their brain wiring gets re-directed ESPECIALLY IN LANGUAGE PROCESSING. Then, because their brains are now organized, not racing faster than any tool of expression would allow, and, because they live in a social world, they now (after getting this super fast computer) acquire those social skills they seemed not to have had before, because their newly organized brains can ATTEND TO verbal cues, thus allowing broad social processes of interpersonal communication to work after all! How did I come up with this theory? Well, I’ve seen the effect of fast computers on several of my Aspergers friends, people with otherwise differing characteristics (age, gender, type of work). I HOPE THAT SCIENTISTS WILL SEE THIS AND RESEARCH IT!!! I ALSO TRULY BELIEVE THAT PEOPLE CLOSE TO PEOPLE WITH ASPERGERS AND THE PEOPLE WITH ASPERGERS CAN GIVE SCIENTISTS IMPORTANT CLUES ABOUT WHAT TO INVESTIGATE!!

    • Tina

      D-Scultz, Please read my post that I submitted at about 12:37 AM Thursday (the exact time isn’t listed yet). The GREAT risk of your POV is that some of the very real negative consequences of being on the spectrum may not be understood, especially if it is easier for OTHERS to dismissively say that this anomaly is just no different than other anomalies; that no one is perfect. The best researchers are finding ways to teach coping skills to kids and adults on the spectrum — I believe that it is so much better to offer these skills than to just “leave those kids alone”. Medication may not be used; but without a diagnosis, chances are that a really insightful “sub-diagnosis” of the SPECIFIC INDIVIDUAL (I just made up that term) will not be forthcoming, and that the coping skills that that person might benefit from will also not be forthcoming!

      I don’t know if you have any experience with this condition in your life, but I have very real experience from knowing individuals — kids and adults — who are on the spectrum very well — starting before it was as easy to get a diagnosis as it is, in some places, today. If you heard the young woman who called in today who seemed to choke up when she described trying to get teachers to take her observations seriously, you might be able to understand the heartbreak I witnessed in several caring, perceptive parents and partners who actively sought an explanation for their perceptions/observations, but who were completely unable to get any serious, or thoughtful, or even inquisitive help with a explanation or diagnosis from either medical or psychiatric professionals, or from educators. Heartbreak and therapeutic time lost — I am afraid that THOSE are the consequences of your attitude, even if you may be too naive and unaware to really realize what you are saying.

      Benign neglect, posing as taking a non-judgmental attitude, is NOT the answer. Benign acceptance is radically different, and requires action and attention. The more that people can know about both the broadness of the spectrum, AND about the specifics of various expressions of it, the more the person and/or people and their families/friends/co-workers/acquaintances/neighbors can operate out of knowledge and caring. Also, the giftedness can be better engendered, as well, when the individual’s entire context is attended to.

      As a parallel, pulling from another condition I know something about, though less than about ASD: too often Alzheimer’s is ALSO pictured as something completely benign: “granddad doesn’t remember who I am”; when, in fact, granddad might not remember that he NEVER hit another person in his life, but now he does. Granddad might wander and get hit by a car which causes the car to swerve so that an additional person is hurt, or worse. The benign portrait of Alzheimer’s is NOT going to be helpful; instead, awareness of the full range of expressions of the condition will prepare and alert everyone, so that more tools are available to everyone, AND so that science can be taught about what else they may want to investigate by the individuals whose family members pay attention to them.

  • Rachel

    What would one recommend a teacher say to a parent if the teacher suspects a student may have Asperger’s or autism? What should the parents first steps be after this has been brought to their attention. Do you recommend seeing their pediatrician or a neurologist?

  • Rachel

    What would one recommend a teacher say to a parent if the teacher suspects a student may have Asperger’s or autism? What should the parents first steps be after this has been brought to their attention. Do you recommend seeing their pediatrician or a neurologist?

  • Michael

    I have notice or seem to notice that when I first worked in child care back in 2000 and when I stop years later it seems the cases of autism increase dramatically.

    But also working in child care i have seen first hand that not all the cases (like ADD) are actually true or some shouldn’t be counted.

    I meet parents who attempted to get there kids diagnosed with ADD when (for the case of ADD) it was actually a parenting problem and the parent/s preferred to medicate there kids than dealing with them. Not all of course of course. I also seen kids act up even more once they were diagnosed as such claiming that it wasn’t there fault but because they had ADD and couldn’t help it to escape punishment.
    (not all of course)

    • Tina

      And yet, too much cynicism about the number of diagnoses is NOT a good thing to keep on the top shelf!! By the way, apparently this happens more to females than to males, but a subset of high-functioning Asperger’s kids is prone to sexual abuse, especially because they may not seem to have a diagnosis of any sort, and are out in the regular social world, where their social learning disorder can give them an open naivete that makes their sexual victimization very easy.

      It is better for professionals to find ways to really understand the spectrum; to really listen to family members (in fact, to care more about getting information from family, close friends, and acquaintances than to care about confidentiality issues — to whatever degree is legally possible!); to be actively curious about the children who might get this diagnosis early enough in their lives that intervention steps can be brought on before the child’s age means their own pride and humiliation makes them reject help and intervention, or means, that once age 18, that the child must initiate the search for a diagnosis themselves (but not so early that the ASD is not yet evident. Many people attest to bright curious 3 year olds, who change with the start of school!).

      The consequences of a social learning disorder can be far greater than just appearing to be awkward. True, there is often accompanying giftedness, and there should be “interventions” based on those gifts, as well, so that the child has a true chance to develop his/her gifts; but, the negative aspects of having a social learning disorder are NOT anything that should be weighed based on the professional’s sense and protection of their own reputation! Being bullied, losing friends, depression, being victimized sexually or criminally — these are some of the gigantic consequences that can attend the lives of some of those who have even just extremely mild versions of ASD. This carries on up thru adult life where job loss, divorce, again victimization, can still define large parts of a life — and WHY? Because some professional didn’t want to “over-react”; or thought that ONLY kids with the most severe forms were deserving of care and intervention? Because school professionals didn’t want to be seen to be sending kids off to special programs out of their districts, lest the professional lose his/her reputation and/or job? NO!

      I am so glad that this show was aired; so very grateful that it was! Even more shows, perhaps devoted to different parts of the spectrum, would not seem repetitive to me, but welcomed!

  • Psychopaddler666

    I am not sure where the lead researcher learned statistics, but 1% prevalence in one population and 1% in another population would not add up to a 2% prevalence rate when those populations are combined for analysis. It would add up to 1%.

    Further, this study indicates that the S. Korean school systems classify children for special education services differently than in the US, NOT that children in mainstream education are underidentified in US educational systems.

    Epidemiological studies examining those in special educational placements are flawed by the lack of appropriate MEDICAL diagnosis. While educators are an important part of the diagnostic process, they are NOT trained in making clinical diagnoses.

    Epidemiologic studies in major medical centers serving entire communities, such as the Mayo clinic HAVE examined rates in the general population (of those surrounding Mayo Clinic), and rates are not nearly as high as those found in this small, culturally distinct population in S. Korea. One of the authors has conducted some of the better large scale studies of prevalence rates in the UK, among the general population (Fonbonne).

    Sadly, the media and concerned parents are unable to distinguish between TRAITS (we all have em) and DISORDERS (we don’t all have them). For example, a negativistic personality or aggressive tendencies does not mean someone suffers from a significant disorder such as depression or antisocial personality. The diagnostic criteria for ALL of the Autism Spectrum Disorders indicates MARKED IMPAIRMENT, and FAILURE to develop/acquire specific skills that is SEVERE and present across MULTIPLE settings. Autistic symptoms are not able to be suppressed, and autistic individuals cannot FAKE normal. Symptoms of autism spectrum disorder are not specific only to autism, and only a qualified, experienced clinician with appropriate diagnostic experience and tools can make such a diagnosis, which represents a lifelong and limiting disability.

  • VS

    Tom,

    Long time listener. Very disappointed in the program, as a parent of autistic kid whose language skills are several years behind grade level. He is now 9. I’ve been several years in special ed system and in any setting my kid stands out as someone who does not understand basic concepts. In other words, you’ll not mistake him for normal kid.

    Based on my observations, there are very few kids who have autism to the degree of “functional impairment”, far less than 2% or even 1%. There is also category of kids who have some kind of physiological problem who have either speech disorder or some other impairment and who you would recognize as on the spectrum. However the discussion always goes to “my kid is so smart but can’t fit in and of course he was diagnosed with Aspergers it opened my eyes how come we don’t have enough services this caused my depression”.

    There is on the other hand entire industry built around scaring parents with ASD, and there are many people who would like to see high numbers and would like to see steady stream of parents seeking therapies and medicines.

    Come on, practically anyone with minor traits can claim Aspergers, definitions are so loose and criteria are so imprecise. And ADHD is probably even more frequent label.

    Program was one sided, and the calls were unusually shallow. No offense to callers. I don’t think there was a single call from parent of non verbal kid, or the call questioning how these diagnoses are made, or call on perspective of prevalence of autism scare, which is undoubtedly on the rise. I am glad PDD NOS was spelled out but even that was out of place and out of context.

    This program did not rise above regular nose one hears on TV and was very bad utilization of time.

    Cheers,
    VS

    • Ellen Dibble

      VS, I see that the full study is available up top, and I will go through it at some point, though I suspect epidemiologists will get more from it than I would. In terms of time, right on the cusp of huge budget battles affecting priorities stretching far out, I think it was fine to sort of pool radio listeners’ attitudes and experiences toward this particular disability. What do people know? What do people think education can do? What do people think medicine can do? Who is responsible, who should pay, where are people looking for guidance and explanations. This is different from scientific panels, which Robert MacNeil concluded at the end of his series were like opposing teams, not so much listening to one another, not so much building on each other’s insights. Commenters there thought maybe too much money is at stake — sure, when you’re talking numbers like 1 in 38. Perhaps, like Congress, there is more fight than collaboration. So a waste-of-time conversation was had. Attitudes and understandings were aired. I expect the parents of nonverbal kids were busy.

      • VS

        Nice comments, Ellen. “Perhaphs parents of nonverbal kids were busy” – funny, there are also fewer of them. Busy is bad excuse, once you have kid with autism getting info becomes priority and you’ll make time for it. “Huge budget battles” – yes, many people, not parents, engage in and stir this topic out of self interest. Many parents have no clue about range on spectrum they just get bombarded with numbers. “Waste-of-time conversation” – that was not where I was coming from, rather lost opportunity to educate general public about even well known and less disputed information.

        “I sat for awhile, frozen with horror; and then, in the listlessness of despair, I again turned over the pages. I came to typhoid fever – read the symptoms – discovered that I had typhoid fever, must have had it for months without knowing it – wondered what else I had got; turned up St. Vitus’s Dance – found, as I expected, that I had that too, – began to get interested in my case, and determined to sift it to the bottom, and so started alphabetically – read up ague, and learnt that I was sickening for it, and that the acute stage would commence in about another fortnight. Bright’s disease, I was relieved to find, I had only in a modified form, and, so far as that was concerned, I might live for years. Cholera I had, with severe complications; and diphtheria I seemed to have been born with. I plodded conscientiously through the twenty-six letters, and the only malady I could conclude I had not got was housemaid’s knee.”

        • Ellen Dibble

          I think with ASD, people have to speak up everywhere and point to exactly what they need to discuss, what they need to hear about. NPR “takes direction,” if you have ideas for them to follow up on. I’m curious what websites you find most helpful. Autism Speaks? Some other discussion sites for parents?

          • VS

            I don’t really use web. Most valuable are conversations with other parents. Not with parents of “social misfits” but ones who make decisions to move cities and countries based on social services and family networks. I looked at studies which I could get hold off back in the day. Teachers for the most part are not educated on ASD. Specialists and doctors are more helpful. Advocacy groups have their place but I would not give them any credibility on the info they provide. Johns Robisons of the world make more harm than good. NPR has not been particularly informative either. For instance recent rebroadcast on TTBOOK of guy going to Mongolia is such narrow innterpretation that anyone who is not familiar with the subject will come to wrong conclusions.

    • Tina

      I had the opposite reaction to the show than you did — I thought it was wonderful. One woman who called in (I write to her directly on this page somewhere) who spoke about not being able to get help, advice, diagnosis from teachers and other professionals, especially in her child’s school … I found her call so moving; I found her bravery in making her call so generous. The spectrum is so broad, and they say that if you know one child with ASD, you know one child with ASD. If even ONE teacher, principal, religious school teacher, etc., heard and understood that they might need to learn more; might need to heed parents’ pleas, this show will have served a major purpose. Also, some people posting here are putting people in contact with even more information. I am so grateful for this show and would have been saved a world of heartbreak if such a show had been aired several decades ago.

  • Ellen Dibble

    I thought maybe @Psychopaddler666 would have the last word, that Mayo Clinic is “on the case,” and people there can properly diagnose, and that autism is a permanent condition, case closed. Then I was reading yesterday’s newspaper, an article by Melissa Healy of the Los Angeles Times, “Hope builds for treating intellectual disabilities.” It’s mostly about Fragile X, but explains a chemistry that might go beyond. “”Minocycline, the medication Chase [a child] has been taking for almost 8 months, is one of several drugs that might correct — even reverse — many of the brain perturbations of fragile X and several other developmental disorders, including autism…. [The study] went on to show that 70 percent of those with fragile X responded with significant improvement in language, behavior and cognitive function. Minocycline’s effectiveness in these early trials appears to be due to its suppression of a protein called MMPM-9, which is overproduced in fragile X brains, derailing normal neural development. The antibiotic also tamps down inflammation in the brain. Both effects, amazingly, are incidental to the drug’s antibiotic powers… Beyond minocycline, early trials are underway for three medications that inhibit a second protein that is overactive in fragile X brains and for a fourth drug, arbaclofen, that acts on yet another brain chemical. Arbaclofen appears from early drug-trial results to reduce the hyperactivity and hypersensitivity that are hallmarks of fragile X and may help children with autism unrelated to fragile X. Mark Bear, a neuroscientist at MIT’s Picower Institute, said there’s universal agreement that such drugs should produce the most dramatic changes in young children. But conducting early trials on very young children raises ethical and safety concerns, so they will focus on adults with fragile X for now.”

  • Mary Andrews

    Mary Andrews from Omaha, Ne. I’m the adoptive mother of a bright, dinosaur-loving boy, Joshua — age 8. This kid has been “different” since babyhood, but I’ve never worried much until age 4-5. At this age, it was clear that he needed a LOT of coaching and encouragement to interact with other kids, share toys, relax in the company of his own kind. It would appear that J. has Asperger’s Syndrome — and I salute his teachers for noticing and helping identify this. His future academically looks quite good, as he is a champion speller, math nut, reader and writer. But what price can we put on friendship? Having someone to confide in, joke around with, take some of the sting out of being laughed at or bullied? THAT is what is missing from Joshua’s life right now. And this arena of “social reciprocity” is where it’s at.

  • Kate Lanxner

    Hello Tom,

    I listen to your program often and enjoyed this report and interview but I believe it left gaping holes in terms of “why?” and “how?”. I am a holistic practitioner and would appreciate having a second show looking at the phenomenon from a body-mind-spirit holistic perspective. I will send something in the postal mail to you rather than add a lot to this deluge of 250 emails. You can read it at your own convenience! Just to make one suggestion: Take a look at the book “Managing the Gift” by Dr. Kevin Ross Emery.

    Sincerely,

    Kate Lanxner, South Burlington, Vermont

  • Ellen Dibble

    I finally printed out the study. Does it say up top, guess what, we have climate change and environmental change externally, and we incorporate the new climate and environment into our tissues, and sooner or later our interior climate/environment is also changed, and these shifts affect the microbiology of our processes. Do we cede this shift to Darwinian forces? Do we fight back with micromanaging the internal “climate” through designer chemical interventions (drugs)? Do we push back holistically, trusting our adaptive potential to bring out the best in whatever climate we are given? Of course. First of all, we do that. It seems this “Managing the Gift” might use that approach. I suspect that some behavioral/attitudinal approaches might be something like a Band-Aid approach, like cutting out a tumor when a cancer has already metastasized throughout the entire bloodstream. Oh, but we only care about the tumor, the part we see. Really?

  • Jessica M

    Dr. Kim says 90% of autism is caused by genetics? Absurd. Autism rates have skyrocketed in the past 20 years – our genes don’t change that quickly. 10-20X more money is spent on researching the genetics behind autism than researching the environmental reasons. Nobody wants to talk about or research the effects of the toxic environment we live in. Until we start paying attention to and limiting the amount of pesticides, plastics, and other countless chemicals in our food, water and air, autism rates will continue to climb.

    • Brett

      You seem to contradict yourself…if no research has been done in this area, how can you KNOW that the environmental concerns you mention are actually causes of autism?

  • Greg

    Why not ask the question on the questionnaire, “What vaccines has the child had” and “were there any adverse reactions to them in your opinion”?

    • Brett

      The purpose of the study was to determine the prevalence of autism in a given population, not possible causes of autism.

      I didn’t like the study because of its anecdotal—in conjunction with faulty statistical analysis—nature. However, if it prompts the cause of battling autism to be discussed, then…that would be one benefit.There is no need–in fact, the whole idea [vaccines cause autism] has been counterproductive to determining how society can provide proper supports to people who have ASD, in addition to determining possible causes and to maintaining the safety and health of children in general–to rehash the vaccine debate. Besides, if asked the way you have suggested, what would this prove? If asked, say, “what solid foods did the child eat when first introduced to solid foods?” and “were there any adverse reactions to solid foods?” Would this prove/disprove solid foods cause autism?

      • Greg

        Brett-
        “There is no need–in fact, the whole idea [vaccines cause autism] has
        been counterproductive to determining how society can provide proper
        supports to people who have ASD, in addition to determining possible
        causes and to maintaining the safety and health of children in
        general–to rehash the vaccine debate.”
        So what your saying is there absolutely is no cause and effect from vaccines that may trigger autistic behavior in anyone therefor do not look there? Maybe my question wasn’t structured in the correct way but it sure would be interesting to know what percentage of those children were vaccinated and to what extent.

        • Brett

          1) In studying the area so far, no causal link has been established. 2) Energy devoted to this area means less energy devoted to actually helping people with ASD 3) The “study” done in England that showed a link has been proven to have used falsified/incomplete data by a researcher receiving money from trial lawyers representing parents trying to sue vaccine manufacturers. 4) When people first heard of a link from the first publication of that same “study,”  many parents decided not to vaccinate their children as a result. This poses a potentially greater public health concern than even the threat of increases in the prevalence of ASD.

          There may be some correlation between pollutants in the environment and the rise of ASD, and this rise in ASD may also just be better recording/counting techniques. Each may account for the rise in numbers; both may account for the rise in numbers. I would consider  putting one’s child on a strict diet and checking for toxins/pollutants in his/her system (doing so poses no health threat to the child and to public health); I consider it irresponsible not to get one’s child vaccinated, though.

          For those who show concern about relationships between vaccines and autism, maybe take that energy and devote it to where it might do some good. Isn’t it easier to proselytize about potential dangers of the modern world or perpetuate conspiracy theories/myths than to help one’s community?   

  • Andrewncrosby

    Tom and Guests, thanks so much for this show. Finally a common sense approach is getting us toward understanding what many of us parents know all too well: there are huge learning issues in the classrooms and the majority are overlooked either because they are denied school service (trying to make room for the “truly needy”); parents are unable to effectively advocate; teachers don’t understand child development, etc. etc. etc. The stories are heartbreaking. With so much at stake I applaud the evidence based approach of these researchers.

  • Drewcifer

    Vaccines are a joke. The flu shot you get this year is the same one you got last year. The CDC admits that vaccines “wear off” after a few months  requiring you get one every year. Anti-bodies produced to keep you healthy after exposure to an infection (Think chicken pox or small pox) last a lifetime. The whole Vaccine industry is a racket, designed to make you unhealthy… that’s why more people getting the flu shot get the flu. If you take care of your health with vitamins, pro-bio-tics, minerals, etc. your body’s own immune system will protect you. So, go ahead keep eating crap and watching TV and worst of all, trusting the white-coats (Doctors) and your government… after all they care so much about you.(NOT!) Foolish sheeple you better wake up. Hey Doc how about a shot of that mercury, I hear it’s good for you.

    • pmm

       Vaccines are a joke?  Really?  Do realize that you and those you know and love haven’t died or been crippled by Polio and/or a host of other diseases because of vaccines?  I suggest you do some research on third world countries and you will see just how important vaccines are and how fortunate you are to live in a country where they are readily available.  You have every right to refuse vaccinations, but to say they are a joke is an ignorant statement.  Like them or not, one can’t deny they have saved hundreds of millions of lives.  

      • Wbsurfver

         propaganda, Polio was never close to an epidemic of any kind until the 20th century. Polio corresponds exactly with the use of DDT and other pesticides. In other words, we may not really know what polio actually is. Hard to believe, but can easily be shown to be true. It can also easily be shown that other than perhaps smallpox, all diseases where we have vaccines – the disease died off naturally due to sanitation or other reasons. The medical establishment came up with the vaccine later and then tried to take credit.

        • Wbsurfver

           I can say this because I looked into it for a number of diseases. I debated someone who seemed informed but disagreed with me and believed in vaccines. He finally had to admit that what I was saying was largely true about how vaccines came out after many diseases disappeared on their own. but he still clung to other anecdotal types of things. What you are taught in medical school and other types of things are highly selective .. People won’t believe this because it seems hard to belive, but go ahead and look into it yourself I challenge you ..

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  • pmm

    As a mother of two young children and a special education teacher, I really appreciated this program.  There was no talk of conspiracy theories, just facts.  

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