Autism Street

It’s Not JUST Better Diagnosis

December 23, 2006 by Do'C  Printer-Friendly Version

14 Comments

1. Comment by Bartholomew Cubbins — 24 December, 2006 @ 9:08 am

   I miss the old sing-along cartoons with the bouncing ball cue. The sad part is that the lesson of this video will be news to a lot of people.

2. Comment by Do'C — 24 December, 2006 @ 9:41 am

   Hi BC.

   I miss the bouncing ball too. We tried to get as close as possible.

   It is frustrating that epidemic and devastation rhetoric captures the media spolight so easily.

3. Comment by Jennifer — 26 December, 2006 @ 6:58 pm

   Thanks D’oC and AD for the link to that article. I hadn’t seen it before, and it makes a great case for not believing in an epidemic.

   I think that Dr. Gernsbacher missed one other reason that the belief is so widespread. Parents who communicate with each other on the internet tend to have children more seriously impacted by autism - the others (and they are the vast majority, as pointed out by Dr. Gernsbacher) have children diagnosed with PDD-NOS or Asperger’s. Those parents are likely to be going on with their lives. The internet parents rightfully say “my child is so severely impacted by autism that they could never have been missed in the past”. And all the other parents online sagely nod and agree with them. They don’t realize that they are a self-selected, non-representative sample.

4. Comment by David Martin — 31 December, 2006 @ 3:05 am

   Here’s the bottom line folks. Fragmented state data and changing diagnostic criteria is enough evidence to prove that these numbers alone are not going support or refute an epidemic. Let’s wade out of the statistics and criteria and talk to some of the folks in the battle fields every day. Ask a school teacher that has been teaching for over 40 years if he/she thinks there has been a significant increase in children that exhibit autistic behavior. After 40 years of service these folks can tell you what falls outside of the relm of everyday odd behavior. Has there been an increase in children having to be pulled out of the classroom for extra services? What about children that require an aid?Let’s talk to the pediatrician that has been in the same town for years and now sees the children of the children they once cared for. Do they characterize Autism as an epidemic or on the rise?Next let’s consider the number of Autism community support groups and local and national non-profit organizations that are popping up across the country. Most if not all of which are founded and run by parents of children with Autism. Is it just easier these days to start these organizations or is it the result of supply and demand?What about getting care for your child with Autism? Someone who specializes in Autism. Try signing up for the one year plus waiting list at Vanderbilt to see their developmental pediatrician. Why would there be a one year waiting list? Maybe supply hasn’t caught up to the demand?There’s enough evidence to support that Autism is a real problem for our communities and deserves the attention of the medical community. Yes the medical community is certainly spending much more time on Autism research and treatments than two decades ago.How about the combating autism act recently signed into law. Do we typically set aside a billion dollars to research a disease that is not on a rapid rise? Most of our senators and representatives do represent us well and do respond to our most pressing issues.Hopefully in two decades we can look back and say you know, it wasn’t an epidemic after all. But we sure were blessed that there were enough folks fighting the good fight to raise awareness and push for answers and support.

5. Comment by Do'C — 31 December, 2006 @ 8:43 am

   Here’s the bottom line folks. Fragmented state data and changing diagnostic criteria is enough evidence to prove that these numbers alone are not going support or refute an epidemic.

   Although you’ve oversimplified the situtation and are missing other critical aspects of the shortcomings of the statistical data related to autism epidemiology, I don’t necessarily disagree. If you’re going to make a claim that there is an ‘epidemic’, the burden of proof is yours to support that claim with scientific evidence. Let’s see what you have to offer.

   Let’s wade out of the statistics and criteria and talk to some of the folks in the battle fields every day. Ask a school teacher that has been teaching for over 40 years if he/she thinks there has been a significant increase in children that exhibit autistic behavior. After 40 years of service these folks can tell you what falls outside of the relm of everyday odd behavior. Has there been an increase in children having to be pulled out of the classroom for extra services? What about children that require an aid?

   Hmmm, not very scientific David. In fact, I’d venture to say “purely anecdotal”. Even if you want to step back from science and examine the anecdotes, I’m afraid you missed a key point provided by some of the science, including Gernsbacher et al. 2005 (did you read it?). There is really no question whatsoever that the numbers of people diagnosed as autistic have greatly increased. Asking a schoolteacher is completely unnecessary. One quick glance at any of the related datasets (CDDS, IDEA, etc.) makes it quite clear that autism is diagnosed much more than 40 years ago. Speaking of 40 years, when was autism first used as a clinical diagnosis? When was it introduced to the DSM? When was the criteria expanded? When was PDD-NOS and Asperger’s added (both of which are considered part of the often mentioned 1 in 166)? In response to the questions you asked, what’s happened to the numbers of children who received services or an aid under a diagnosis of mental retardation or something else? Did you read (Shattuck, 2006)? It included the following:

   “The growing administrative prevalence of autism from 1994 to 2003 was associated with corresponding declines in the usage of other diagnostic categories.”

   Let’s talk to the pediatrician that has been in the same town for years and now sees the children of the children they once cared for. Do they characterize Autism as an epidemic or on the rise?

   Again, there is really no question that the numbers of people diagnosed with autism has been, and is probably still, on the rise. Do you have anything that would support a notion that such rise is an ‘epidemic’? Science would be preferred.

   Next let’s consider the number of Autism community support groups and local and national non-profit organizations that are popping up across the country. Most if not all of which are founded and run by parents of children with Autism.

   There is really no question that the numbers of people diagnosed with autism has been, and is probably still, on the rise. Do you have anything that would support a notion that such rise is an ‘epidemic’? Science would be preferred.

   Is it just easier these days to start these organizations or is it the result of supply and demand?

   Don’t you think it could be both, with the demand for support groups being affected the increasing numbers of people diagnosed with autism?

   What about getting care for your child with Autism? Someone who specializes in Autism. Try signing up for the one year plus waiting list at Vanderbilt to see their developmental pediatrician. Why would there be a one year waiting list? Maybe supply hasn’t caught up to the demand?

   What does a relative shortage of ’specialists’ have to do with the actual rates of autism (which you seem to have not gone near in any of your comment so far)? Some parts of the country have shortages of, and waiting periods to see an ob-gyn. Is there an epidemic of females?

   There’s enough evidence to support that Autism is a real problem for our communities and deserves the attention of the medical community.

   Evidence such as? I don’t disagree that support, accomodation, and services are in fact needed in a big way (especially in the educational systems).

   Yes the medical community is certainly spending much more time on Autism research and treatments than two decades ago.

   What ‘treatments’ are you referring to? Are there ‘treatments’ for autism itself? Is the definition, or are the etiologies of the autisms even clear?

   How about the combating autism act recently signed into law. Do we typically set aside a billion dollars to research a disease that is not on a rapid rise?

   So the government approves spending allocation and that means autism is a disease that is on a rapid rise? That’s a huge leap in logic.

   Most of our senators and representatives do represent us well and do respond to our most pressing issues.

   Does that mean they understand the science? Do you (speaking for the “us”) understand the science? You haven’t presented any, although you did not claim that you would when you suggested that we wade out of it.

   Hopefully in two decades we can look back and say you know, it wasn’t an epidemic after all. But we sure were blessed that there were enough folks fighting the good fight to raise awareness and push for answers and support.

   So you’re going to assume that there is an ‘epidemic’ an the absence of any evidence that there is in the meantime? Autistic people deserve better, in my opinion. I think you would do well to actually read Gernsbacher et al. if you didn’t. If you did, a re-read wouldn’t hurt.

6. Comment by dj — 31 December, 2006 @ 10:07 am

   David Martin -

   Yes, let’s wade outside of statistics and play in a pile of anecdote. Good idea. That’ll get to the bottom of it.

   By the way, if you ask anyone in your neighborhood if murder has gone up in the last 30 years they’ll say yes. If you ask anyone if rape and incest have gone up in the last 30 years they’ll say yes. If you ask anyone if political scandal has gone up in the last 30 years they’ll say yes. Right or wrong, taking polls is not the best way to get a good picture of a statisitical question, my friend. Things are always getting worse and happening more often. It’s just the nature of perception.

   But more importantly, if we get back to numbers and sta-tis-tics (say it with me), you and the Imuses clearly are ignoring, repeat, ignoring, the fact that other categories of mental deficiency or behavioral disorder have been merged with “autism” as a category. The numbers MUST go up.

   Fer example, let’s ask another anecdotal question, shall we? When you and I were young, there were “retarded” kids. Where did they go? Why are there not “retarded” kids in every school now? There are. But they’re autistic.

   Either that, or while an autism epidemic has bloomed we seem to have cured retardation, aspergers, and “slowness”. Must be something in the water.

7. Comment by David Martin — 31 December, 2006 @ 11:22 am

   You say:

   There is really no question whatsoever that the numbers of people diagnosed as autistic have greatly increased.

   Is’nt that the definition of an Autism epidemic? Sorry I couldn’t resist. Your points are valid. From my perspective I don’t see how calling it an epidemic harms those with the diagnosis. If it helps gain attention and bring about faster results in terms of treatments and prevention then I am all for it.

8. Comment by David Martin — 31 December, 2006 @ 11:34 am

   DJ,

   sta-tis-tics, there I said it. I feel better now…thanks.

9. Comment by Do'C — 31 December, 2006 @ 11:47 am

   Is’nt that the definition of an Autism epidemic? Sorry I couldn’t resist.

   Uh, no David, it’s not. Are you having difficulty understanding the difference between the “numbers of people who are autistic” (ie: the actual prevalence of autism itself) and the numbers of people who are formally diagnosed as such? You understand what a real epidemic is, right? You really ought to try to read some of the research, especially Gernsbacher et al.

   Your points are valid. From my perspective I don’t see how calling it an epidemic harms those with the diagnosis.

   Clearly. Gernsbacher et al. might help you understand why falsely referring to the increase in numbers of people diagnosed as autistic as an ‘epidemic’ may not really help at all. You really ought to consider reading it. Pay close attention to the statements about false causes and the application of the word ‘epidemic’ to autistic people.

   If it helps gain attention and bring about faster results in terms of treatments and prevention then I am all for it.

   You’re certainly entitled to your opinion, regardless of the fact that it might be dehumanizing to autistic persons, be lacking in ethics, or have zero scientific merit whatsoever.

10. Comment by P Holland — 8 January, 2007 @ 7:51 pm

    Watch “Thank you for Not Smoking.”

    Watch it, it is available at your Library at no charge, then you will see why the politics of Autism care for your child are not currently in our favour.

    and if nothing else, it is actually somewhat “balanced,” and humorous.

11. Comment by Do'C — 8 January, 2007 @ 9:04 pm

    It looks interesting enough (from the imdb site).

    What does it have to do with autism?
    Please be specific.

    What do you mean by “autism care”?
    Please be specific.

12. Comment by notmercury — 9 January, 2007 @ 5:16 pm

    Was a funny flick. Not related to autism at all.

13. Comment by 666sigma — 20 January, 2007 @ 4:43 am

    Once again, this is pure anecdotal evidence with ZERO proof behind it. As was obvious from my previous posts, I agree with everything that they wrote because it is common sense. BFD. But nowhere do they show any clear data to quantify the impact. They wasted most of their paper on a rather amusing argument about lowering the height necessary to be considered tall. Duh!!!

    From 1 in 10,000 to 60 in 10,000 is a long way. Even if 90% of the rise is due to a broader definition, better diagnosis and greater awareness then that would still leave a 500% increase in the rate of autism. Once again, there is ZERO proof that there has not been an increase.

    Unfortunately, you write as though this is proof. You rally around PURE anecdotal data that supports your opinion and rip into anyone who believes anecdotal data to the contrary.

14. Comment by Do'C — 20 January, 2007 @ 9:02 am

    From 1 in 10,000 to 60 in 10,000 is a long way. Even if 90% of the rise is due to a broader definition, better diagnosis and greater awareness then that would still leave a 500% increase in the rate of autism. Once again, there is ZERO proof that there has not been an increase.

    1 in 10,000? Citation please. (Don’t bother to cite Generation Rescue, or other autism-mercury websites, please provide peer-reviewed epidemiology).

    There has been a definite increase in diagnoses, please consider going back and reading the previous comments before commenting further.

    It’s possible, there could be a real increase. Do you have any scientific evidence which shows that this is true?

    Unfortunately, you write as though this is proof. You rally around PURE anecdotal data that supports your opinion and rip into anyone who believes anecdotal data to the contrary.

    My opinion is that there is no convincing scientfic evidence that there is an autism ‘epidemic’.

    If you want to change that opinion, all you need to do is bring scientific evidence that there has indeed been an autism ‘epidemic’.

RSS feed for comments on this post.

Sorry, the comment form is closed, see "Comments/Contact" under "About".