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
  • ARC has a website catering for the big UK research centres like Cambridge which lists published academic papers.

    However these are mostly very specialised studies on the causes of autism or studies of groups of children. Papers on adults are few and far between, and tend to be limited to very specific investigations that don't seem to help enlighten our understanding of the needs of adults.

    There has been a paper this year on "The cost-effectiveness of supported employment for adults with autism in the UK" (Mavranezouli et al)

    When you look at it it is about supported workplaces for people with mental health problems or intellectual disability compared to just having them hang around in day centres. This is important research if it comes up with advantages for getting more people on the spectrum into supported work rather than not being sufficiently engaged.

    However there's a bigger problem here, and the article does refer to the cost of supporting adults with autism - £26 Billion in 2006 alone.

    It is easy to understand from this that the Government is eager to get people on the spectrum into work. But it is clear from Disability Confident that the Government are thinking about able people on the spectrum able to take on work and be self sufficient.

    UK academics are  fumbling about with whether work is a better way of keeping people severely affected by autism occupied. This is important work, but it doesn't answer the Disabilty Confident side of the equation.

    Why not? Wat's stoppinbg UK researchers studying the wider adult autistic spectrum population?  Is it intellectual snobbery? Or the direction the money goes in?

    We realy really really need answers now.

Reply
  • ARC has a website catering for the big UK research centres like Cambridge which lists published academic papers.

    However these are mostly very specialised studies on the causes of autism or studies of groups of children. Papers on adults are few and far between, and tend to be limited to very specific investigations that don't seem to help enlighten our understanding of the needs of adults.

    There has been a paper this year on "The cost-effectiveness of supported employment for adults with autism in the UK" (Mavranezouli et al)

    When you look at it it is about supported workplaces for people with mental health problems or intellectual disability compared to just having them hang around in day centres. This is important research if it comes up with advantages for getting more people on the spectrum into supported work rather than not being sufficiently engaged.

    However there's a bigger problem here, and the article does refer to the cost of supporting adults with autism - £26 Billion in 2006 alone.

    It is easy to understand from this that the Government is eager to get people on the spectrum into work. But it is clear from Disability Confident that the Government are thinking about able people on the spectrum able to take on work and be self sufficient.

    UK academics are  fumbling about with whether work is a better way of keeping people severely affected by autism occupied. This is important work, but it doesn't answer the Disabilty Confident side of the equation.

    Why not? Wat's stoppinbg UK researchers studying the wider adult autistic spectrum population?  Is it intellectual snobbery? Or the direction the money goes in?

    We realy really really need answers now.

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