Tuesday, September 26, 2006

A Plausible "Epidemic" Hypothesis

I have argued many times that there hasn't been a real epidemic of autism. The evidence is compelling. For example, we know how much the proportion of autistic CDDS clients with mental retardation has changed since 1992 to the present time. We know that the rate of institutionalization of developmentally disabled individuals is not on an upward trend. And there is evidence of diagnostic substitution. But we are still left with the question as to why the number of diagnoses has increased so much.

Sure, we talk about an increase in awareness and changes in criteria and cultural perceptions. But why did this happen mostly in the 1990s? Lorna Wing coined the term Asperger's syndrome in 1981. The DSM-IV was published in 1994, years after the increasing trend in diagnosed cases had started. The trend accelerated after the DSM-IV publication, but there's no noticeable spike. I think there has to be an independent cultural phenomenon that drove changes in awareness and cultural perceptions.



I think the key to answering this question comes from parent experiences regarding how a child's diagnosis of autism came about. Usually it goes like this. The pediatrician tells the parents not to worry or gives an assessment completely unrelated to autism. The parents start to do their own research. Then they go to a hospital or find an specialist who is able to diagnose autism. My guess is that when parents visit a psychiatrist they typically already suspect the diagnosis of autism.

It is not far fetched to suppose that the internet has made a huge difference in providing parents the ability to carry out extensive research, and enhancing general awareness.

The internet began to take off shortly before the 1990s. At that time there was Usenet. There were mailing lists. It was more of an academic tool rather than a corporate one. Gopher was released in 1991 and begun to gain in popularity. By Q2 1994, the world wide web surpassed Gopher and that's when the internet really exploded.

Growth in number of internet hosts


What the hypothesis predicts

  • Regions with higher internet penetration will tend to have a higher incidence of autism. (This would explain in part the link to degree of urbanization, with another factor being availability of specialists).

  • In populations with no internet access whatsoever, autism will be virtually unheard of.

  • At time of diagnosis, households with an autistic child are more likely to have internet service than households of a control group matched by age, even after social class is considered.

  • Internet access correlates with reduced elapsed time from concern to diagnosis.

53 comments:

  1. Yeah, but... the computer monitors have mercury and lead in them, so parents who have a computer in their home are more likely to ....

    never mind. :-) I guess it would work if the parents regularly swallowed their computer monitors...

    The Internet had a big part to play in the "autism epidemic." That seems obvious to me.

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  2. Hi Joseph as far as trying to devise a correlation between the internet and the increases in autism, your analysis suffers, in my opinion, from the same problem that proponents of the thimerosal hypothesis use to show a correlation between thimerosal and increased autism. That is the endpoints always start in the early 1990s. Yet if you look at the 2003 update to the california report we see the prevalence of autism more than doubled between birth years 1970 and 1986 during a time when there was no public internet and a time when only DPT vaccinations had thimerosal along with slightlhy decreased uptake rather than increased uptake. So, I don't see how it can be either thimerosal or the internet.

    My belief is that it is due to changes in special education legislation that named autism as a diagnostic category in 1991. At this point the 1986 cohort was 5 years old, the age at which children come into regional center in about the greast numbers.

    As far as the huge increase starting in 1994, I believe the Shannon Carter decision of the supreme court which said that persons with no credentials or training could be paid by school districts under special ed law. This opened the door for all of the untrained lovaas therapists who are like only 20 years old or even still in high school to reinforce the claim of normalcy in nearly half of all autistic children, in spite of the inequivalencies in the control and experimental groups that i know you already know about in terms of gender.

    I am still waiting for a study to disprove the special ed hypothesis and the shannon carter decisions as being factors in increased diagnoses.

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  3. It's just anything but the mercury isn't it?

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  4. Well yeah - it IS something other than mercury. Take a look at the data from IMFAR 2006.[http://www.cevs.ucdavis.edu/Cofred/Public/Aca/WebSec.cfm?confid=238&webid=1245] Great NIH study - took a look at growth hormones in autistic kids. I suspect you know that the Waly hypothesis rests on mercury and a heap of other nasties disrupting growth hormones. Well, they found that autistics have an abundance of growth hormones in perfect working order- they're wallowing in the stuff, which accounts for significantly larger body mass and head circumference. Not a runty dwarf in sight. Ain't Science wonderful?

    And the study also measured DHEA-S in autistics. Contrary to the hypotheses of that dynamic duo, the Geiers, pre-pubescent autistics not only make DHEA-S, they seem to do so at twice the rate of non-autistics. They really ought to put the non-autistic population on Lupron. But, that's risky - maybe a day or two and then they'd be hauled up on charges of child abuse. Mark could even lose his licence to practice and then where would he be? - no captive autistic children to experiment on for fun and profit.

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  5. As I said. It's anything but the mercury.

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  6. DSMIII-R (1987) really broadened the criteria. so you would expect diagnosis to increase from 1990 onwards. DSMIV (1994) narrowed the criteria for autistic disorder but introduced Asperger Disorder. so no overall change. However most people who meet the criteria for Aspergers also meet the criteria for autism. If. like California, you tighten the criteria for services and say autism Yes, aspergers No, people switch diagnoses. AS goes down. AD goes up. But it ias all fairly meaningless given the chaotic nature of our understanding of ASDs and the sorry state of the diagnostic criteria.
    Do not forget that Tony Attwood has said that he would fail a PHD student of his who came up with the DSM criteria for Aspergers.

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  7. We did not own a computer when my son regressed. However - I had issues from when I was a child (sensory issues, OCD and depression) so I did not even begin to think autism. As a matter of fact I was unmoved when the neuro-psych said PDD because she made no mention that was autism. It wasn't until I was in a bookstore and found out what PDD was that I was like no way does he have autism because he was (as my parents say) just like me when I was a kid. We even went to three different specialists because I just thought it was wrong and wanted confirmation to see if they would concur (which they did). Now that I have done research I have found out about the autism spectrum and my persepctive is different and it is really just another name for what they used to label higher functioning kids with.

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  8. Jonathan: That's for the critique. Note that I don't think the internet is the only factor. For example, if the number of specialists increased between 1970 and 1986, that's a factor. (Usenet started in 1979, and it grew fairly quickly after that -- though it probably wasn't that big of a general awareness factor back then).

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  9. It's just anything but the mercury isn't it?

    Jonsmum: Mercury had its time as a hypothesis. It didn't pan out. Science needs to move on.

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  10. Mike: Changes in criteria can certainly move the ceiling up, and it's a soft ceiling IMO. But I don't think they explain gradual trends in administrative prevalence over time. For example, between 2005 and 2006 I don't think psychiatrists were still switching criteria, yet there was a 10% increase in the 3-5 caseload in California. So there's an awareness component, and I think a major increase in awareness was driven by the internet (simultaneous with an increase of information in general) during the 1990s.

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  11. To compare - OCD was also thought at one time to be very rare but once the public was informed about the condition AND that there was now treatments the number of people diagnosed has increased to the point where it is not considered rare. No one thought there was some sort of environmental factor - it seemed fairly obvious that it was something people did not advertise and only those who were severely effected were brought to any medical professional's attention. So - awareness about therapies (legitamate or not) may have also contributed to the awareness increase in autism also.

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  12. Joe;
    Since we know that doctors use chelation to cure mercury poisoning and chelation is curing autism, can you explain how the chelation is doing that if it has nothing to do with mercury?
    How come 1 in 166 75 year olds have not been diagnosed with autism?
    Why does Soapbox Mom beat her child?

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  13. Joseph;
    You like to think, "Mercury had its time as a hypothesis. It didn't pan out. Science needs to move on."

    Mercury poisoning is not a "hypothesis". It's time as the cause of autism has far from "panned out", and you need to wake up to this fact.

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  14. Why does John Best Jr., Fore Sam, beat his child is the question? Why does he feel a need to slander soapboxmom? Why doesn't he get a life? Don't answer, please.

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  15. Joseph,
    I see you exploring new possibilities. By doing this you challenge the stereotype that some people have about people with autism being narrow minded.
    I see you caring about children with autism and helping parents (and everyone)become more educated about autism. By doing this you challenge the stereotype that some people have about people with autism being unempathetic.
    I have some questions for you but for now I just wanted to say that I think you deserve alot of respect. Im learning alot from you.
    Thanks, Ed

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  16. Mercury poisoning is not a "hypothesis". It's time as the cause of autism has far from "panned out", and you need to wake up to this fact.

    You can either continue to dwell on what is clearly a dead hypothesis, or adapt to changes in knowledge. It's your choice really.

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  17. Since we know that doctors use chelation to cure mercury poisoning and chelation is curing autism, can you explain how the chelation is doing that if it has nothing to do with mercury?

    Because there is no evidence that chelation is curing autism. In fact, the GR cure rate seems to be a lot lower than the natural recovery rate for autism.

    How come 1 in 166 75 year olds have not been diagnosed with autism?

    These are really smart questions, John :)

    I don't think there are 1 in 166 30 year-olds diagnosed. Yet, a screening of adults with the AQ test yields 2-3% high scorers. There's a difference between number of individuals diagnosed with autism and number of autistic individuals. I'm not sure if you are able to comprehend that.

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  18. Fore Sam: Since we know that doctors use chelation to cure mercury poisoning and chelation is curing autism, can you explain how the chelation is doing that if it has nothing to do with mercury?

    John,
    If you could modify your question, so that it doesn't include false statements, you may stand a better chance of finding an answer.

    Here are the parts you will need to modify:

    we know that doctors use chelation to cure mercury poisoning

    No, we don't know that. Chelation is a treatment for mercury poisoning, a marginally effective and incomplete attempt to reduce total mercury body burden. It does not repair damage that is already done and in some cases chelation can contribute to health problems.

    and chelation is curing autism

    So you say. Curing as in the present tense of the ongoing process. At some point the past tense cured should apply. After several years of curing, there are an awful lot of children that aren't yet cured. Where are the cured children, John?

    can you explain how the chelation is doing that if it has nothing to do with mercury?

    Of course this part of your question is completely dependent on the preceding false statements but let's assume that that latter is true and chelation actually does help some kids.

    There are plenty of alternative possibilities including mitochondrial disorders where alpha-lipoic acid is part of the treatment protocol, neuroinflammatory disorders where succimer and ALA act as an anti-inflammatory and inhibit monocyte migration and CNS extravasation, or merely function as antioxidants.

    Response to the chemicals you like to call chelators is not proof positive for the existence of mercury toxicity. Sorry. It isn't.

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  19. NM;
    The fact that no cured child has asked to be reinjected with mercury is proof positive for any sane and honest person that the chelation cured them. Spin it any way you like but you can not dispute that fact.
    The fact that many of these kids gained language and improved behaviors with methyl B-12 proves what Deth told us about the effect of mercury on methylation. Why don't you give your kid some mb-12 and see if it helps? Maybe you could convince one of your adult autistics to try it. I don't suppose they'd give us an honest answer publicly if it did help them though.

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  20. Have you forgotten that Methyl-B12 converts mercury to the much more toxic form, methylmercury? If it's helped your child it's proof positive that he isn't mercury toxic.

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  21. NM;
    Just keep "spinning" the facts. You don't really have any other options, do you. The fact is, bonehead, over 90% improve with MB-12.
    Did you know that trying to cure kids instead of letting them rot converts child abusers into decent parents?

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  22. If you say so, John, but that means they aren't mercury toxic. So of the remaining 10%, how many become more autistic in your opinion?

    Just how many autistic kids have you met anyway?

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  23. The fact is, bonehead, over 90% improve with MB-12.

    I truly, truly can't wait for the double-blind studies of Me-B12. The claims of 60-90% improvement rate are archived on the web for all to see, as was Rimland's 75% improvement rate with Secretin.

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  24. NM;
    Kids improve on MB-12 only if they're mercury toxic. Deth explained it all. I don't need to hear your idiotic slant.
    Joe;
    Burning any crosses lately?

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  25. Deth showed no such thing, I don't think you understand his lab experiments, but they aren't relevant to autism at all.

    So if methyl-B12 helped reduce hip fractures, would you deduce hip fractures are a symptom of mercury poisoning?

    Would you mind answering my other question? How many autistic kids have you met?

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  26. John,

    The next relevant thing you say will be the first.

    Why don't you go try some chelation, you idotic tool? It doesn't cure autism, but perhaps you it can cure stupidity. THAT would be something I'd like to see written up in a medical journal.

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  27. NM;
    Deth gave us the best explanation so far describing EXACTLY how mercury caused the autism epidemic.
    Your analogy is absurd.
    I've met around 100 autistic kids.
    Anonimouse;
    Education can cure stupidity in some cases. You don't appear to be one of those cases. Chelation cures autism, not stupidity.

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  28. FS:Deth gave us the best explanation so far describing EXACTLY how mercury caused the autism epidemic.

    Well then you should have no trouble explaining EXACTLY how his work has anything to do with autism.

    Your analogy is absurd.

    Why?

    I've met around 100 autistic kids.

    All NH residents or through the internet?

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  29. NM;
    Simply (so you can understand), kids who can't make their own MB-12 can't pay attention to anything. Mercury prevents that process.
    See if your wife can explain why the analogy is absurd. I don't have that much time.
    I've met about 100 kids in person, not all from NH.

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  30. Thanks for dumbing it down for me but you still haven't provided any evidence to show that autistic children are unable to synthesize B12. You can't and neither did Dick Deth.

    So of the 100 kids you've met, how many did you meet over the internet? How many were autistic due to a known cause other than mercury poisoning?

    And the hip fracture thing isn't an analogy, it's a question. Care to answer it? If methyl-B12 helped to reduce hip fractures, would you deduce hip fractures are a symptom of mercury poisoning?

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  31. NM;
    Deth did.
    None.
    It doesn't help reduce hip fractures.

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  32. So that's your argument. He did cuz I said so? Lame, even for you. Maybe some methyl-B12 will help, old man.

    JAMA. 2005 Mar 2;293(9):1082-8
    Effect of folate and mecobalamin on hip fractures in patients with stroke: a randomized controlled trial.

    Sato Y, Honda Y, Iwamoto J, Kanoko T, Satoh K.
    Department of Neurology, Mitate Hospital, Tagawa, Japan.

    CONTEXT: Stroke increases the risk of subsequent hip fracture by 2 to 4 times. Hyperhomocysteinemia is a risk factor for both ischemic stroke and osteoporotic fractures in elderly men and women. Treatment with folate and mecobalamin (vitamin B12) may improve hyperhomocysteinemia. OBJECTIVE: To investigate whether treatment with folate and vitamin B12 reduces the incidence of hip fractures in patients with hemiplegia following stroke. DESIGN, SETTING, AND PATIENTS: A double-blind, randomized controlled study of 628 consecutive patients aged 65 years or older with residual hemiplegia at least 1 year following first ischemic stroke, who were recruited from a single Japanese hospital from April 1, 2000, to May 31, 2001. Patients were assigned to daily oral treatment with 5 mg of folate and 1500 microg of mecobalamin, or double placebo; 559 completed the 2-year follow-up. MAIN OUTCOME MEASURE: Incidence of hip fractures in the 2 patient groups during the 2-year follow-up. RESULTS: At baseline, patients in both groups had high levels of plasma homocysteine and low levels of serum cobalamin and serum folate. After 2 years, plasma homocysteine levels decreased by 38% in the treatment group and increased by 31% in the placebo group (P<.001). The number of hip fractures per 1000 patient-years was 10 and 43 for the treatment and placebo groups, respectively (P<.001). The adjusted relative risk, absolute risk reduction, and the number needed to treat for hip fractures in the treatment vs placebo groups were 0.20 (95% confidence interval [CI], 0.08-0.50), 7.1% (95% CI, 3.6%-10.8%), and 14 (95% CI, 9-28), respectively. No significant adverse effects were reported. CONCLUSION: In this Japanese population with a high baseline fracture risk, combined treatment with folate and vitamin B12 is safe and effective in reducing the risk of a hip fracture in elderly patients following stroke.

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  33. Fore scam,

    Know how I can tell you're lying? Every time I see "Fore sam" (or your other aliases) at the beginning of a post.

    Face it, your son's autism is most likely a result of your genetic material. You can either accept that and move on with helping your son the best you can, or you can keep whining about the big pharma conspiracy.

    Let me put it simply - you are not getting any money from the drug companies. Ever. Find another way to get paid for your "pain and suffering", you bigoted jerk.

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  34. NM;
    Your hip fracture vitamin is not the same as methylcobalamin, is it.
    Anonimouse;
    We tested for genetic problems. My son did not have any. Chelation would not be helping him like it is if his problems were genetic.
    I don't lie or make biased comments. The person who makes racial slurs is the owner of this blog who sounds like a KKK member.

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  35. Fore Sam: Your hip fracture vitamin is not the same as methylcobalamin, is it.

    uh, yeah. It is

    We tested for genetic problems. My son did not have any.

    You may have tested for some common genetic disorders but that doesn't mean his autism isn't genetic. I don't expect you to understand that.

    Chelation would not be helping him like it is if his problems were genetic.

    alpha-lipoic acid is not chelation and it would help a person with a mitichondrial disorder. Have you checked for that?

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  36. NM;
    Your article said mecobalamin not methylcobalamin. It's not my fault they can't spell.
    The genetice involved are his inability to excrete mercury.
    ALA is a chelator. Where do you come off claiming it isn't?

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  37. They can spell fine. I don't know why you project your shortcomings on others. Anyway, are hip fractures caused by mercury?

    Let me get this straight, you haven't tested for mercury yet you have reason to believe your son has a genetic mutation that interferes with his ability to excrete mercury?

    alpha-lipoic acid may do a lot of things but it does not chelate mercury. I realize you will continue to present it as proof of mercury toxicity, it's not but I am willing to change my mind if you can produce evidence to the contrary.

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  38. ALA is an anti-oxidant and it's useful for conditions such as diabetic neuropathy. Wasn't there a study recently which showed ALA is useless as a mercury chelator along with Vitamin C?

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  39. NM;
    I get my information from Dr Cutler. His advice is curing children. That's the only thing that's important for me to know. As you want to consider yourself some sort of scientist, I think you should prove us all wrong by injecting thimerosal directly into your brain. Jock Doubleday's challenge allows people to drink it but that could allow digestion and the blood brain barrier to interfere with possible results, don't you agree?
    Since there are cured children who followed Dr Cutler's advice, it falls on you to prove that something other than the ALA caused their cure. Until you can do either of these two things, you can shove your idiotic pseudo-scientific comments.

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  40. Joseph;

    "I think the key to answering this question comes from parent experiences regarding how a child's diagnosis of autism came about. Usually it goes like this. The pediatrician tells the parents not to worry or gives an assessment completely unrelated to autism. The parents start to do their own research. Then they go to a hospital or find an specialist who is able to diagnose autism. My guess is that when parents visit a psychiatrist they typically already suspect the diagnosis of autism."

    Are you saying that parents who have been reassured by a pediatrician about their childs development, go on to do their own research in order to seek a diagnosis of autism?
    Do you think the pediatrician was wrong in the first place, or do you think the psychiatrist and the developmental team involved in diagnosing autism were wrong?
    From your above statement, somebody has to be wrong.
    Why do you think parents would doubt the pediatricians asessment enough to their own research?

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  41. "I think the key to answering this question comes from parent experiences regarding how a child's diagnosis of autism came about. Usually it goes like this. The pediatrician tells the parents not to worry or gives an assessment completely unrelated to autism. The parents start to do their own research. Then they go to a hospital or find an specialist who is able to diagnose autism. My guess is that when parents visit a psychiatrist they typically already suspect the diagnosis of autism."

    That's precisely how it went for us. If not for the internet, a diagnosis would have come much later. The pediatrician was wrong in one sense but no one is to blame.

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  42. Why do you think parents would doubt the pediatricians asessment enough to their own research?

    Because parents naturally worry for their kids.

    I've heard that anecdote so many times. I've heard it from JB Handley and JB Jr. It's very common. Certainly, it's much easier to find what you're looking for these days than, say, in 1960.

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  43. Not mercury;
    "That's precisely how it went for us. If not for the internet, a diagnosis would have come much later. The pediatrician was wrong in one sense but no one is to blame."

    It went precisely the opposite way for us. The pediatrician told us our son was autistic and we would have to wait six to nine months for an appointment for a formal asessment and diagnosis.
    We waited six months. We had no access to the internet. We hoped the pediatrician would be wrong, but by the time it came round to our sons asessment we knew they were right.

    Joseph;
    You haven't answered my question.
    Do you think parents seek a diagnosis of autism when they have been assured otherwise by their pediatrician.
    I wouldn't have.
    What happened with you and your own son?

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  44. Do you think parents seek a diagnosis of autism when they have been assured otherwise by their pediatrician.

    Absolutely. But to clarify, I'm not saying the pediatrician says "it's not autism." I believe both the pediatrician and the parents are clueless about autism at that point.

    I wouldn't have. What happened with you and your own son?

    Last checkup before he was diagnosed, the pediatrician told us my son was OK, just immature for his age. He suggested we might be spoiling him, and also to not give him the bottle anymore. I knew about autism already because when I was single I had read an article that described me very precisely. Still, it took quite a bit of reading and filling out screening questionnaires before it dawned that it might really be autism and we took him to a child psychiatrist.

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  45. Joseph;
    Are you in the UK?

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  46. Joseph;
    It sounds like American? pediatricians aren't too good at recognising autism in young children.
    This is not the case in the uk.

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  47. Were pediatricians in the UK as knowledgeable of autism in 1990? Clearly, awareness among pediatricians must have increased during the 90s too. Most pediatricians don't screen for autism even as of 2006, and I'd bet that's true anywhere.

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  48. Jodeph;
    Mine did. She had a speech and language therapist specialising in working with autistic children, with her to evaluate our son.
    Bearing in mind the question of my son being autistic had not been raised by us as parents.
    The speech and language therapist, who was also head of the special needs department with our local education authority also teaches the Hannen Programme and the NAS Early Bird Programme, and she was also involved in the process of our sons official assessment and diagnosis of classic autism six months later.
    I suppose when you are initially referred to your pediatrician, they are made aware of your concerns regarding your child, and if these concerns relate to delayed development, the they are ready with the appropriate professionals in judging/making an an initial diagnosis.
    In our case and in everyone I have met via these 'programmes', their pediatrician 'got it right' when diagnosing/identifying ASD. This was in 2003.

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  49. Joseph;
    The pediatrician also had much more common sense and useful advice regarding our sons behaviour problems than the psychiatrist and educational psychologists involved in his clinical diagnosis.
    This suggests to me that pediatricians in the UK have significant experience of seeing and diagnosing developmental disorders such as autism, due to the vast increase in referals and incidence of ASD.

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  50. There's a recent US study which reported only 8% of pediatricians screen for ASD, even though over 80% screen for developmental delay.

    I do believe pediatricians are getting better at screening autism. No question.

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  51. DAVID ANDREWS;
    BIG APOLOGY FROM SUSAN LORD,
    David. I sincerely apologise for saying this about you.

    "David Andrews;
    Get back here and tell me you didn't say this,

    "You have some room to talk, really... one day you kid will kick shit out of you for being too stupid to realise he's not a worthless being!

    I would love to video that day!"

    You arrogant bastard."

    I genuinely believed you had made that nasty comment about my son.
    I don't believe you did, I was wrong, and I apologize.

    Susan.

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  52. Jonathan mentioned the Shannon Carter case, which is the leading US Supreme Court case interpreting I.D.E.A. However, he terribly mis-characterizes it. For a very detailed discussion of the case, visit www.wrightslaw.com, the website of Pete Wright, who was Shannon Carter’s attorney. In essence, the court said that under I.D.E.A. a child is entitled to a Free Appropriate Public Education (F.A.P.E.) and requires that a school district go outside of the state pre-approved schools if there are no appropriate pre-approved schools. Shannon was failing at the pre-approved school/program, and was succeeding at the one her parents found. The Court rendered their 9-0 decision in her favor in a month’s time. I doubt that the decision played much part in the apparent rise.

    However, in 1991, Pres. George H. W. Bush directed the US Department of Education to do something to fully implement I.D.E.A. The DoE issued a memorandum to all LEA (local education authorities) that broadened the scope of the inquiry as to why students were not learning. This memorandum pertained to AD/HD, but, in the search for the proper classification, there can be no doubt that more ASD cases were found. See: http://members.tripod.com/~PoPsMin/memorandum.html.

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