Diagnosis of autism occurs much later than it should among Medicaid-enrolled children

4 Aug

This from a recent study by Prof. David Mandell’s group. The abstract is below:

Psychiatr Serv. 2010 Aug;61(8):822-9.
Age of diagnosis among medicaid-enrolled children with autism, 2001-2004.

Mandell DS, Morales KH, Xie M, Lawer LJ, Stahmer AC, Marcus SC.
Abstract

OBJECTIVE: This study examined child- and county-level factors associated with age of diagnosis of autism among Medicaid-enrolled children and the change in age of diagnosis over time. METHODS: National Medicaid claims from 2002 to 2004 were used to identify age of diagnosis and characteristics of children younger than ten years old with a diagnosis of autism (ICD-9 codes 299, 299.0x, or 299.8x). These data were linked to county-level education and health care variables. Linear regression with random effects for state and county was used to examine associations between these variables and age of diagnosis. RESULTS: A total of 28,722 Medicaid-enrolled children newly diagnosed with an autism spectrum disorder were identified. Their average age of diagnosis was 64.9 months. Adjusted average age of diagnosis dropped 5.0 months for autistic disorder and 1.8 months for other spectrum disorders during the study period. Asian children were diagnosed earlier than children in other racial or ethnic groups, although these differences were much more pronounced for other spectrum disorders than for autistic disorder. Children eligible for Medicaid through the poverty category were diagnosed earlier, on average, than children who were eligible through disability, foster care, or other reasons, although this difference decreased over time. Children in large urban or rural counties were diagnosed later than children in small urban or suburban counties. CONCLUSIONS: Findings showed that diagnosis of autism occurs much later than it should among Medicaid-enrolled children, although timeliness is improving over time. Analyses suggest that most of the observed variation is accounted for by child-level variables, rather than county-level resources or state policies.

PMID: 20675842 [PubMed – in process]

The age of diagnosis in California for the general population was 3 years by 2000 (falling from 6 in 1992) according to a recent paper by Bearman’s group at Columbia. Why are medicaid children diagnosed later?

I find it odd that children on medicaid due to poverty are diagnosed earlier than children “eligible through disability, foster care, or other reasons”. Naively, I would expect the opposite: that children already identified with a disability would be under greater scrutiny and more likely to receive evaluations to determine an ASD diagnosis.

Much more can be said about this, but I will stop with “Diagnosis of autism occurs much later than it should among Medicaid-enrolled children”. This is just wrong. We as a society should take better care of our most vulnerable.

7 Responses to “Diagnosis of autism occurs much later than it should among Medicaid-enrolled children”

  1. stanley seigler August 5, 2010 at 20:30 #

    [LBRB say] This is just wrong. We as a society should take better care of our most vulnerable.

    just wrong, criminal, immoral, just myopic stupidity…its really baad out there in this “best of all worlds”…some Christian nation, eh…

    society: ”pray there aint no hell”…give the least the least…crumbs from a rich country/state’s table

    Later dx, much later dx, never dx; CA-USA eg:

    “In the fall of her tenth-grade year, Addison failed every academic subject. The counselor considered these grades to be a “major red flag.” Teachers reported that Addison was “like a stick of furniture” in class, and that her work was “gibberish and incomprehensible.” Teachers also reported that Addison sometimes refused to enter the classroom, colored with crayons at her desk, played with dolls in class, and urinated on herself in class … [recommendation] assess Addison for learning disabilities. Despite the recommendation, the School District [compton ca]did not refer Addison for an educational assessment, and instead promoted Addison to eleventh grade.” http://groups.yahoo.com/group/DDRIGHTS/message/5982

    above from ninth circuit court case

    court say: “I do not believe that the record is sufficiently developed for a final judgment at this juncture. For these reasons, I must dissent.”

    JUSTICE FOR ALL…except the least.

    perhaps not related to late autism dx…but if it can happen to anyone it could/does happen to those on the spectrum…some on spectrum were not dxed until adults…

    stanley seigler

  2. David N. Andrews M. Ed., C. P. S. E. August 6, 2010 at 11:03 #

    Stanley Seigler: “but if it can happen to anyone it could/does happen to those on the spectrum…some on spectrum were not dxed until adults…”

    I’m beginning to revise my opinion, Mr. Seigler.

    No. Seriously. I am.

    After the kind of crap that late-diagnosees like myself have had to put up with from the likes of JBJr, bensmyson and a large handful of others, seeing that statement from you has certainly softened my attitude towards you. I shall disagree with you on the FC thing: I go with the science always, and scientific validation is a must for anything that is used with any disability group as a means of support or whatever.

    Nonetheless, I’ll thank you now for having stated the above. I dunno when your daughter was diagnosed, but – and I’m being serious here – if it was evident in her youth, then it should have been diagnosed in her youth; if it wasn’t, then shame on the people doing the observing and evaluating at the time. I can say from my own experience that public sector schools do not like the responsibility of having to support all the children in their care. And if avoiding early diagnosis is a way they can shuffle off that responsibility, then they’ll go with that. What you told me about the way the psychologist dealt with the issue for your daughter made me feel sick. And I’m saying that as a psychologist myself. I can see why you distrust many in the professions. I have that same distrust of them.

    We have that, at least, in common.

  3. stanley seigler August 6, 2010 at 17:28 #

    [study say] OBJECTIVE: This study examined child- and county-level factors associated with age of diagnosis of autism among Medicaid-enrolled children and the change in age of diagnosis over time…METHODS: National Medicaid claims from 2002 to 2004 were used to identify age of diagnosis…RESULTS: A total of 28,722 Medicaid-enrolled children newly diagnosed with an autism spectrum disorder were identified. Their average age of diagnosis was 64.9 months…CONCLUSIONS: Findings showed that diagnosis of autism occurs much later than it should among Medicaid-enrolled children…

    COMMENT
    diagnosis of autism occurs much later than it should among Medicaid-enrolled children…did we need a study to tell us dx occurs much later than it should…why focus on medicaid children…

    what are positive outcomes of the study…the dx avg age of 28,722 is 64.9 months…are they sure it’s not 64.7…

    study seems like make work for scientists…a misdirection of funds…misplaced priorities…typical of all too many Blue Ribbon studies.

    what prompted this study…will any policies/programs be changed as a result…

    stanley seigler

  4. David N. Andrews M. Ed., C. P. S. E. August 6, 2010 at 18:31 #

    Stanley said:

    “diagnosis of autism occurs much later than it should among Medicaid-enrolled children…did we need a study to tell us dx occurs much later than it should…why focus on medicaid children…”

    The reason for having a study is to provide actual evidence that there is a problem with the system, which notion is supported by the data. The study was, therefore, a good thing. We can’t go by ‘feel’ on things, Mr. Seigler… we may wish to, but we can’t.

    Your question about focus is very relevant: why only Medicaid? I would like to see a study dealing with other systems of health and social care, and how the diagnostic routes there work (or not).

    Stanley again:

    “study seems like make work for scientists…a misdirection of funds…misplaced priorities…typical of all too many Blue Ribbon studies.”

    I disagree entirely. Might seem that way, especially when scientists are managing to make a bollocks of a lot of things. However, I’d say that a good study, done properly, can give us data that turns out to be worth the money spent on it, if politicians and other administrators are prepared to enact the recommendations that come from such studies.

    The problem’s not the scientists. It’s the politicians.

    Stanley, once more:

    “what prompted this study…will any policies/programs be changed as a result…”

    Dunno what prompted it, but I’ve a strong feeling that very little will occur as a result of it, if the inferences are that money should be spent on what administrators see as ‘a bunch of kids who refuse to fit in’.

  5. Kylyssa Shay August 9, 2010 at 17:26 #

    The results of this study are totally unsurprising. However, I think the study was necessary to illustrate the problem.

    I’d wager that for any particular ailment we’d get the same results if similar studies were done on them. Medicaid patients and poor patients in general do not get the same level of care as wealthy patients. Wealthy people live longer in America for a reason.

  6. stanley seigler August 9, 2010 at 18:16 #

    [Kylyssa Shay say] The results of this study are totally unsurprising. However, I think the study was necessary to illustrate the problem.

    PRIORITY, Priority, priority…with limited funding (except to wage unnecessary wars, wall st bailout, etc)…money (social services piece of the pie) better spent on improving quality of support…

    if administrators needed this info to improve policies…this so called study could have been preformed by a clerk checking Medicaid records…ie, check 28,700 records for date of dx to determine ave dx age 64.9 months (not 64.7 or 64.3)

    have serious doubts any policy changes will be made now that administrators know what they “unsurprising” already knew…

    time/energy/money wasted on study would have been better spent revising policies to improve dx times…

    DO IT! dont study or committee it death; to create an illusion of progress…

    sadly this just one of many misplaced priorities…

    stanley seigler

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    […] This post was mentioned on Twitter by Liz Ditz, johnnyA99 and Liz Ditz, Karen Simmons Sicoli. Karen Simmons Sicoli said: RT @lizditz http://bit.ly/a3fWv0 #specialed: Diagnosis of autism occurs much later than it should for low-i… http://tinyurl.com/23oy426 […]

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