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
  • Something else about the quality of research on autism. Every year this discussion forum is inundated with students wanting information for their projects, who haven't gone through the proper channels on the website.

    The danger with ad hoc research is you do not know enough about the respondents you get in this way to ensure they are representative. Also there are serious ethical issues about the disposal of data after research, and even if carefully anonymous, some information imparted could implicate an individual or an organisation. So you just don't do it.

    Now there are always students, usually the lazy ones, who will try to do it this way, hoping not to be found out. And some of the projects I've seen have been arts or media students.

    But most of the students making these approaches have been from psychiatry, psychology, psychiatric nursing and related subjects. And some of them have been from top institutions. The fact we get so many of these suggests that the standards, as regards undergraduate projects are not being enforced.

    And if these disciplines are being lazy about undergraduate ethics does that implicate the quality of more advanced research?

    The outcomes of research on autism have far reaching impact on the current autistic community. I don't think that academics in this field fully appreciate the implications or their responsibilities.

Reply
  • Something else about the quality of research on autism. Every year this discussion forum is inundated with students wanting information for their projects, who haven't gone through the proper channels on the website.

    The danger with ad hoc research is you do not know enough about the respondents you get in this way to ensure they are representative. Also there are serious ethical issues about the disposal of data after research, and even if carefully anonymous, some information imparted could implicate an individual or an organisation. So you just don't do it.

    Now there are always students, usually the lazy ones, who will try to do it this way, hoping not to be found out. And some of the projects I've seen have been arts or media students.

    But most of the students making these approaches have been from psychiatry, psychology, psychiatric nursing and related subjects. And some of them have been from top institutions. The fact we get so many of these suggests that the standards, as regards undergraduate projects are not being enforced.

    And if these disciplines are being lazy about undergraduate ethics does that implicate the quality of more advanced research?

    The outcomes of research on autism have far reaching impact on the current autistic community. I don't think that academics in this field fully appreciate the implications or their responsibilities.

Children
No Data