Are the messages about autism compromised?

There have been lots of conflicting claims about the prevalence of autism over the past year. I wonder which messages the Government and health professionals are listening to, and whether the ones sent out by NAS are being countermanded by other claims.

The latest claim in the British Medical Journal is that the increase in diagnosis in the 1990s has levelled off since 2000, and that the yearly diagnosis rate is 3.8 per thousand (compared to popularly held views that it is greater than 10 per thousand, possibly 13).

The study was based on diagnoses each year by the age of 8, but that could be to do with the effectiveness of diagnosis, especially as with recession, and the evidence of parents trying to get their children diagnosed or statemented, whereby there might be a deliberate policy to reduce diagnosis to fudge the statistics. Another study in America suggests a 78% rise between 2002 and 2008, and why wouldn't it surprise me if the UK was trying to pretend things again? 

Who do you believe? And more importantly who do the Government and Health Professionals believe?

Another claim made a year ago in the Journal of Child Psychology and Psychiatry believes children can grow out of autism.  Well we know many GPs hold that view, and it seems to be reinforced from somewhere. The evidence is supposedly that groups receiving strong support show marked improvement in social interaction skills, but that's been known as a short term response to coaching for some time.

Funnily enough you can always get a daft wee bit of research done in the UK, if the money's the right colour, but spend £0.5m on developing training and awareness packages and there's no apparent outcome!

The puzzle with the "grow out of it" research is it has the usual problem with eye contact. It thinks that if conspicuous gaze aversion stops the problem has gone away.

I truly dispair. The two most obvious and persistent factors are poor use of eye contact, preventing assimilation of a wide range of non-verbal cues, and sensory issues/sensory overload. Both are pushed to the back of scientists' minds, the eye contact if it isn't obvious. No-one seems to have explored whether these are key causal factors. That might better explain short-term improvements.

But NAS needs to weigh up whether the messages it is putting out are compromised by contradictory messages coming from sources the professionals, and Government, hold in better respect. Like the British Medical Journal and the Journal of Child Psychology and Psychiatry.

Parents
  • What I believe Longman, is that something is going on in the background with assessments.  A deliberate attempt to reduce diagnoses.

    A local scrutiny panel on autism services for children had the following nuggets in it's minutes (these quotes are by the LA Head of SENs):

    "ASC statements are eligible for ‘top-up’ funding as they have always been categorised as ‘low incidence’ and the LA provides additional funding in addition to funding delegated to schools for low incidence categories of need. However as ASC is now the highest incidence category of need for statements, this needs to be re-thought."

    "There is also the issue that allowances (eg DLA) become accessible with a diagnosis. The team receive a lot of requests for statements – some parents may put pressure for a diagnosis because they see it as a ‘passport’ to services. This is a change from the past when a diagnosis was seen often seem as more devastating in terms of consequences for a young person."

    "The question is always whether the higher prevalence of ASC diagnosis is about higher prevalence of ASC or a change in classification to include a wider spectrum of need or both."

    So not only are they accusing parents of trying to force clinicians to (mis)diagnose autism to sponge off the benefits system, but they are wanting to take away funding for autism because it's now too prevalent (therefore autistic children don't deserve support) and are then criticising the diagnostic process by saying we are overdiagnosing, so in other words this explains the attitude I have heard from parents saying that CAMHS are often saying "not enough traits for a diagnosis" and "well s/he doesn't have any problems at school so s/he doesn't need a diagnosis".

    It's disgusting.  No matter what the NAS pushes for, this underhand, snide and suspicious attitude is always going to mean many families with autistic children do not get support because there is an ulterior motive.  And yes, it's about money.

    Regarding the "growing out of autism" you might like to read this which pulls apart those results in sufficient detail to show it for the fraud it is:

    http://www.forbes.com/sites/emilywillingham/2013/01/17/can-people-really-grow-out-of-autism/ I don't always agree with all of the author's articles but this one is enlightening.

    Obviously you cannot grow out of autism.  Years of trying to fit in to society and "play a part" to be like others has a tremendous toll on mental health.  Look up "Aspie burnout".  You can never lose your autism, adapting and coping doesn't mean you can.  You put that same person who has learned to adapt and "pass" into an adverse environment and watch them regress before your eyes.

    So yes, in answer to your question.  The above article shows how it's so easy to be selective for the purposes of massaging statistics.

Reply
  • What I believe Longman, is that something is going on in the background with assessments.  A deliberate attempt to reduce diagnoses.

    A local scrutiny panel on autism services for children had the following nuggets in it's minutes (these quotes are by the LA Head of SENs):

    "ASC statements are eligible for ‘top-up’ funding as they have always been categorised as ‘low incidence’ and the LA provides additional funding in addition to funding delegated to schools for low incidence categories of need. However as ASC is now the highest incidence category of need for statements, this needs to be re-thought."

    "There is also the issue that allowances (eg DLA) become accessible with a diagnosis. The team receive a lot of requests for statements – some parents may put pressure for a diagnosis because they see it as a ‘passport’ to services. This is a change from the past when a diagnosis was seen often seem as more devastating in terms of consequences for a young person."

    "The question is always whether the higher prevalence of ASC diagnosis is about higher prevalence of ASC or a change in classification to include a wider spectrum of need or both."

    So not only are they accusing parents of trying to force clinicians to (mis)diagnose autism to sponge off the benefits system, but they are wanting to take away funding for autism because it's now too prevalent (therefore autistic children don't deserve support) and are then criticising the diagnostic process by saying we are overdiagnosing, so in other words this explains the attitude I have heard from parents saying that CAMHS are often saying "not enough traits for a diagnosis" and "well s/he doesn't have any problems at school so s/he doesn't need a diagnosis".

    It's disgusting.  No matter what the NAS pushes for, this underhand, snide and suspicious attitude is always going to mean many families with autistic children do not get support because there is an ulterior motive.  And yes, it's about money.

    Regarding the "growing out of autism" you might like to read this which pulls apart those results in sufficient detail to show it for the fraud it is:

    http://www.forbes.com/sites/emilywillingham/2013/01/17/can-people-really-grow-out-of-autism/ I don't always agree with all of the author's articles but this one is enlightening.

    Obviously you cannot grow out of autism.  Years of trying to fit in to society and "play a part" to be like others has a tremendous toll on mental health.  Look up "Aspie burnout".  You can never lose your autism, adapting and coping doesn't mean you can.  You put that same person who has learned to adapt and "pass" into an adverse environment and watch them regress before your eyes.

    So yes, in answer to your question.  The above article shows how it's so easy to be selective for the purposes of massaging statistics.

Children
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