Monday, April 06, 2009

Autism Epidemic Denial : The Flip Side of the Autism Services Obtainment Argument

Reported cases of autism spectrum disorder diagnoses have risen dramatically in the past 15 years. There can be no dispute that the expansion in the definition and diagnostic criteria of autism disorders in the DSM play a significant part in that rise. Another argument often made by those who would argue against any real increase in autism disorders is that the increasing availability of autism related services results in more autism diagnoses as physicians assign an autism diagnosis in questionable cases in order to qualify a child for receipt of those services.

I suspect that such incidents do occur but I have no idea whether "service obtainment" diagnoses occur with such frequency as to have a measurable impact on the numbers of autism diagnoses. I have never seen any reports of studies which accurately measure such an impact.

On the flip side I have never even heard anyone mention whether the provision of services specific to autism could result in children who actually have autism being denied an autism diagnosis as a result of autism service providers placing pressure on diagnosing physicians or psychologists. If it sounds too bizarre to contemplate read the story of Alex Thompson and his family in the UK where Alex's treating physician was subjected to pressure to give Alex a different diagnosis for his autism disorder by the local service provider.

In NHS trust apologises to newsreader after changing son's autism diagnosis the Telegraph reports that the chief physician in the organization responsible for assessing Alex admitted to having withdrawn his autism diagnosis under pressure from organization's education officer. The story also indicates that the physician discharged Alex from her care because his parents, who fought a years long legal battle to have his services restored, had made it impossible to continue.

The Thompson's are certainly not unique in being labelled by officials as difficult because they fought for their child. And according to Alex Thompson's father their situation in fighting for proper care for their child is not unique in the UK:

“We are certainly not the only family to have gone through this. It is happening up and down the country and it has got to be stopped.”

The autism service obtainment argument speculates that the push for autism specific services by parents results in more autism diagnoses being provided in order to qualify children for receipt of those services. The Thompson case illustrates the possibility of a push back factor - autism diagnoses being changed or denied under pressure from service providers seeking to avoid funding of autism specific services.

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Claire said...

This is an interesting point. Here in Ontario, where the CCAC (Community Care Access Centres) manage services, there are regions where people get fewer services by virtue of staff withholding information about services that are available. I had the great pleasure of telling a parent from another region about funding available to hire support for homeschooling...she was categorically told by her case manager that it did not exist, until I sent her all the legislation and pointed out the fact that in my home worked one such support person...and well paid at that. Unfortunately, it all depends on the case manager. I wonder how much pressure they are under to keep information at a minimum.

farmwifetwo said...

I'm going to have to say "I'm not surprised".

At 2.5yrs old we were given Mild PDD - we should never have returned to the Dev Ped's. At 3 b/c he was just starting to talk we got "speech and language delayed with global delays". He got full preschool services - well speech and funding - and the school's comment "It's just a learning disability we don't have to do anything until Gr 3". No supports - NADA, except speech which he lost in Gr 2.

We fought for the next 18mths to get him re-dx'd by another Dev Ped. His dx currently reads "a mild form of autism spectrum disorder". Verbally I was told "NLD w/ S/L delay".

This was the end of Gr 1 and FINALLY we had access to the PDD teacher (school to school to school one) but still no supports. This is a TOILET TRAINED child that went to school in a pull-up - until I lost it at the end of Gr 1 - b/c of sensory issues in the bathroom that NOBODY would address.

After the psychometric test was completed this past Sept - Gr 4 - I was told I could have him re-dx'd. I looked at the psychometrist and said "The teacher has just asked for more EA time which he isn't going to get. The child FINALLY has OT support - that's another story - and an EA quarter time. You change that dx and we lose it all. The answer is NO."

We will look into it in Gr 8, at the next psychometry exam... he's doing AMAZING, right on Prov Standards - some above, some just below.... but I'm not parting with the supports just to remove AUTISM from his dx.