tag:blogger.com,1999:blog-5548560205914833324.post5745687028926977819..comments2023-04-23T00:16:48.148+01:00Comments on Questioning Answers: 1 in 50 children with parent-reported autism in the USPaul Whiteleyhttp://www.blogger.com/profile/14288851488012254897noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-5548560205914833324.post-64235207679788425882013-03-23T19:25:59.780+00:002013-03-23T19:25:59.780+00:00Thanks MJ, I'm just reading it now.... and ver...Thanks MJ, I'm just reading it now.... and very interesting indeed.Paul Whiteleyhttps://www.blogger.com/profile/14288851488012254897noreply@blogger.comtag:blogger.com,1999:blog-5548560205914833324.post-59917035969632924032013-03-23T14:40:41.185+00:002013-03-23T14:40:41.185+00:00I have been avoiding posting for a while now becau...I have been avoiding posting for a while now because I don't have the time to devote to it that I used to have but I decided to take your advice. If you don't mind a small self plug, here it is -<br /><br />http://autismjabberwocky.blogspot.com/2013/03/autism-rising-by-numbers.html<br /><br />I think the second chart pretty much tells the whole story. The increase is due to later diagnosis in the oldest children (13 to 17) but the younger school aged children have an equally high prevalence without the later diagnosis. M.J.https://www.blogger.com/profile/12033918835169823548noreply@blogger.comtag:blogger.com,1999:blog-5548560205914833324.post-28609862395451647832013-03-21T09:17:00.179+00:002013-03-21T09:17:00.179+00:00Thanks for the comment.
I would agree partially w...Thanks for the comment.<br /><br />I would agree partially with your observations in terms of attitudes changing to recognising the wide spectrum of autism.<br /><br />In terms of a formal screening program, I would perhaps differ in the conclusion. We do kinda formally screen for autism & dev. issues - at least in the UK - based on things like health visitor developmental checks & the reason for the CHAT, M-CHAT being developed, the guidance provided in every child's yellow book (birth-5 years) and the various assessments as part of reception and infant school entry; even in some cases in preschool facilities. Some of this was included in the NICE guidance on pathways to diagnosis.<br /><br />Yes, one could see how for adults born prior to these steps being taken, it would be easy to 'slip through the net'; that alongside the diagnostic substitution that also undoubtedly contributes to the current rise in cases.<br /><br />The literature on parents recognising potential issues with autism actually suggests that parents are quite good at spotting developmental red flags: <br /><br />http://www.ncbi.nlm.nih.gov/pubmed/12846383<br /><br />It seems however that accessing formal diagnostic services is where the stumbling blocks begin to appear: <br /><br />http://www.ncbi.nlm.nih.gov/pubmed/22546598Paul Whiteleyhttps://www.blogger.com/profile/14288851488012254897noreply@blogger.comtag:blogger.com,1999:blog-5548560205914833324.post-33261139540401557382013-03-21T09:01:25.894+00:002013-03-21T09:01:25.894+00:00"The implication that for example our screeni..."The implication that for example our screening methods and skilled professionals have been able to miss or mis-diagnoses a staggering number of children presenting with an ASD is truly mind-boggling and worthy of an inquiry or two in the US and beyond."<br /><br />I don't think it's surprising at all. In the absence of a formal screening program (like we have for breast cancer), diagnosis of any disease will depend on people (parents in this case) turning up and trying to get a diagnosis.<br /><br />I think a large part of the recent rise in ASD cases is due to changes in parent behaviour and attitudes. And also to some extent teachers.<br /><br />It's very difficult for a professional to diagnose a child with ASD even if they're a textbook case - <i>unless</i> the parents cooperate. Parents can even make it hard to diagnose adults (if they refuse to do the ADI for example.)Neuroskeptichttps://www.blogger.com/profile/06647064768789308157noreply@blogger.comtag:blogger.com,1999:blog-5548560205914833324.post-79378879225228663852013-03-21T08:45:11.459+00:002013-03-21T08:45:11.459+00:00Thanks Roger.
I agree that the gains in early dia...Thanks Roger.<br /><br />I agree that the gains in early diagnosis are improving the whole diagnostic picture (and potential for implementation of early intervention in whatever shape or form this takes).<br /><br />I still have my worries about diagnosing too early insofar as the relative instability of the diagnosis (particularly the sub-diagnoses) although there is a case for intervene first, diagnose later...Paul Whiteleyhttps://www.blogger.com/profile/14288851488012254897noreply@blogger.comtag:blogger.com,1999:blog-5548560205914833324.post-59098826245534086062013-03-21T08:42:39.855+00:002013-03-21T08:42:39.855+00:00Thanks MJ. Your analysis goes much deeper than min...Thanks MJ. Your analysis goes much deeper than mine did for sure and I would encourage you to post about it (if you haven't already contemplated this).<br /><br />What I continue not to understand is why there is a dearth of 'incidence' studies over prevalence in terms of how the numbers pan out.Paul Whiteleyhttps://www.blogger.com/profile/14288851488012254897noreply@blogger.comtag:blogger.com,1999:blog-5548560205914833324.post-63548162561854353802013-03-21T03:22:28.423+00:002013-03-21T03:22:28.423+00:00Sorry, one last comment. I finished pulling the o...Sorry, one last comment. I finished pulling the original data and I stand by my original comment. <br /><br />When looking across the entire data set for children who currently have an autism diagnosis in 2012 the breakdown looks like this -<br /><br />61% were diagnosed before the age of 6<br />25% were diagnosed between 6 and 9 <br />14% were diagnosed after the age of 9<br /><br />For 6-17 year olds the breakdown was as follows -<br /><br />55% were diagnosed before the age of 6<br />29% were diagnosed between 6 and 9 <br />16% were diagnosed after the age of 9<br /><br />Or, in terms of the 2% prevalence and the entire population -<br /><br />1.23% were diagnosed before the age of 6<br />0.30% were diagnosed between 6 and 9<br />0.27% were diagnosed after the age of 9<br /><br />And the 6-17 age group -<br /><br />1.10% were diagnosed before the age of 6<br />0.58% were diagnosed between 6 and 9<br />0.32% were diagnosed after the age of 9<br /><br />But in the 2007 data set there is no data about the age diagnosis so entire point is somewhat moot. However, most of the current diagnosis in the 2012 population (81.5%) happened at age 8 or earlier which tends to void the headline that most of the increase happened in older children.<br />M.J.https://www.blogger.com/profile/12033918835169823548noreply@blogger.comtag:blogger.com,1999:blog-5548560205914833324.post-23823914652452915622013-03-21T00:56:59.568+00:002013-03-21T00:56:59.568+00:00And of course the data that I was looking at for t...And of course the data that I was looking at for the table had years and months combined (17 could equal 17 years old or it could mean 17 months) so maybe the numbers I cited about age of diagnosis aren't quite right...<br /><br />So maybe just ignore me.M.J.https://www.blogger.com/profile/12033918835169823548noreply@blogger.comtag:blogger.com,1999:blog-5548560205914833324.post-68247927219313995352013-03-21T00:11:49.422+00:002013-03-21T00:11:49.422+00:00Maybe it is just me but something doesn't seem...Maybe it is just me but something doesn't seem quite right with this paper.<br /><br />For example, the frequencies table published by the CDC gives a breakdown of the age when a child first was given a diagnosis of autism (K2Q35A_1). I think it includes all children who ever had a diagnosis instead of just those who currently have a diagnosis but the pattern is shows is what I would expect - the majority of diagnosis happen between the ages of 2 to 8 (74.8%) <br /><br />Other than a strangely high point at age 18, the graph shows a decreasing number of diagnosis per year. And if you exclude that one point then you get that about 77% of of the diagnosis happened between 2 and 8.<br /><br />Which is what I would expect but then the headline of the paper is that a major chunk of this almost 1% increase is from older children getting diagnosed later in life. I don't see how we can get from 3 out of 4 child being diagnosed by 8 to showing a 75% increase that is attributable to children getting diagnosed later in life.<br /><br />A simple estimate would be that 1.5% of the total 2.0% number would have been from children 8 and under which would still be a substantial growth the last estimate in 8 year olds of 1.1%. <br /><br />I guess it is time to download the raw sas data and spend some quality time analyzing data...M.J.https://www.blogger.com/profile/12033918835169823548noreply@blogger.comtag:blogger.com,1999:blog-5548560205914833324.post-82218821942652338712013-03-20T20:12:36.778+00:002013-03-20T20:12:36.778+00:00Thanks Peter.
I agree that diagnostic substitutio...Thanks Peter.<br /><br />I agree that diagnostic substitution is one variable potentially contributory to the numbers being described. Having said that, like most things where autism is concerned, there are no doubt other variables similarly acting on the numbers of cases, including it has be said, the possibility of a real increase as at least partially being involved. <br /><br />As for differing outcomes, well, again I think it part and parcel of the fact that autism is more likely the autisms, and for some children, with the right support, the outcomes can be very favourable (as per the Deborah Fein data recently).Paul Whiteleyhttps://www.blogger.com/profile/14288851488012254897noreply@blogger.comtag:blogger.com,1999:blog-5548560205914833324.post-75906101582097947502013-03-20T18:09:26.796+00:002013-03-20T18:09:26.796+00:00This is a very interesting and recurring topic. O...This is a very interesting and recurring topic. On the web, people always use the ever widening US definition of autism. I have some data, that I plan to dig up, that was very revealing. While there is talk of an autism epidemic in the US, there has been a, rarely commented on, marked decline in mental retardation over the last 25 years. What do you think you get when you make a chart of the prevalence of more than mild autism and add mental retardation? Then you do not see a mental health epidemic. There is an epidemic of diagnosis in the US. My sister is a GP in England, but she does not seem to have very many patients with autism. It must be very hard on parents of severely autistic children when they read about cases of “recovery”; a border-line child has improved and is now “cured”. So now, if they can’t fix their non-verbal and possibly aggressive child, they have somehow failed.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.com