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
  • Just to add to this "growing out of autism" idea. I think that there is a brief period in the life of a person with autism (and no learning disabilities) where they appear to have got a lot better, for me this was as a late teenager and on into under and post grad University. You are both in a structured environment, and there are no pressures except doing the work required. However, every day is still an act. It is not natural behaviour as it is for NTs.

    Later the cracks start to appear, either the problems of not finding work and the benefits system, finding work and having to try and maintian the mask every working day etc etc. Loneliness, isolation (all the things adults with autism write about on these forums).

    Unfortunately research does not follow people with autism beyond their 20s. I really think the pressure of keeping up the Aspergian Mask to live an NT is too much in the end, and all the co-morbid conditions appear, and there is no treatment that works for reactive mental health issues.

    So, what I am trying to say is that I think it is possible that there is an appearence of "growing out of autism" but it is just learning a set of very mentally draining skills which create a false person, and sooner or later the cracks appear and the autistic behaviours "come back" (of course they never went away they were just masked), and they are combined with all the problems of long years of mental effort to keep the NT mask going.

    In my opinion it is this effortful "faking it as an NT" that NTs just can't get. Being in their world is so easy for them they don't understand that pretending to be an NT for someone with autism is just impossible. So the researchers mistake the observed NT behaviours for some fundamental change in behaviour which has become assimilated and easy.

Reply
  • Just to add to this "growing out of autism" idea. I think that there is a brief period in the life of a person with autism (and no learning disabilities) where they appear to have got a lot better, for me this was as a late teenager and on into under and post grad University. You are both in a structured environment, and there are no pressures except doing the work required. However, every day is still an act. It is not natural behaviour as it is for NTs.

    Later the cracks start to appear, either the problems of not finding work and the benefits system, finding work and having to try and maintian the mask every working day etc etc. Loneliness, isolation (all the things adults with autism write about on these forums).

    Unfortunately research does not follow people with autism beyond their 20s. I really think the pressure of keeping up the Aspergian Mask to live an NT is too much in the end, and all the co-morbid conditions appear, and there is no treatment that works for reactive mental health issues.

    So, what I am trying to say is that I think it is possible that there is an appearence of "growing out of autism" but it is just learning a set of very mentally draining skills which create a false person, and sooner or later the cracks appear and the autistic behaviours "come back" (of course they never went away they were just masked), and they are combined with all the problems of long years of mental effort to keep the NT mask going.

    In my opinion it is this effortful "faking it as an NT" that NTs just can't get. Being in their world is so easy for them they don't understand that pretending to be an NT for someone with autism is just impossible. So the researchers mistake the observed NT behaviours for some fundamental change in behaviour which has become assimilated and easy.

Children
No Data