Are the messages about autism compromised?

The problem of research following people is that the research cohort, in respect of autism, is rather remote from the professions they serve. This is because they are publishing in professional journals paid for by societies whose members are mostly practitioners - GPs, psychologists, psychiatrists etc.

The actual research cohorts are few and small - key ones include Cambridge and Sheffield. And they are involved directly with people on the spectrum, which makes the results seem all the more peculiar.

Because most of the practitioners out in the real world may only occasionally treat people with autism, and even then it is more likely they are treating someone for depression or psychiatric complications who just happens to be on the spectrum.

Of the autism research cohort you'd expect them to have a very good knowledge of autism because they are usually centres which also diagnose and support people on the spectrum. So why aren't they more switched on?

Well for one thing where does the money come from that pays for research? In psychiatry and psychology there are panels of experts who determine the basis for diagnosis and care and treatment and cure of conditions. I suspect the research is funded to support the status quo - in other words - there's little or no money around to go off and be innovative or find out something new. I suspect in psychology and psychiatry you have to stick to fairly narrow rules, or else go and research something less critical like the paranormal or people's responses to music.

The other problem is the quality of research. It puzzles me that the populations (numbers of individuals on the spectrum) studied in these research papers is incredibly small, occasionally less than 10 and seldom more than 30. In most academic disciplines such study populations would be deemed way too small to be accurate. Moreover there seem to be few controls on the variables in these populations - we don't know whether they are sufficiently comparable. We are talking in terms of what would be for most scientists totally unacceptable study populations.

I suspect these are the patients passing through the clinic attached to the research cohort at any one time, who might be on their books for a span of several years, who consent to being studied as part of their treatment. So they could have all kinds of comorbid and secondary conditions. Moreover the actual research may be equally questionable - poorly structured questionnaires, poorly regulated observations, incomparable measurements etc. I doubt if the research would be acceptable to most scientic disciplines.

So what's going on here? The public at large probably assume that universities and internationally recognised institutions set the standards across all disciplines. And universities aiming for top research rating have the same standards across all subject areas.

The reality is that the standards are set by respective peer groups across those subjects in other universities, not centrally. So the quality of research between disciplines varies enormously. To some extent this is inevitable as the evidence may not be comparable. Many arts researchers are dealing in video recordings, portfolios of work produced etc., which have to be assessed on quality and originality.

In most sciences, in order to compete at the top research ratings, individual researchers have to produce numbers of very high standard research papers and it is very hard to get a readership or a professorship. In other subject areas readerships and professorships are handed out for ludicous reasons - some subject areas having appallingly low standards. The problem is, assessed across univesities, a subject like say archaeology, can achieve top rating for work that wouldn't qualify for an A Level, and readers and professors have hardly any internationally recognised papers by normal standards.

It leads to a lot of cross disciplinary resentment. Some academics have to work incredibly hard to get a professorship, other disciplines really seem to give them away, leading to accusations of awarding "plastic professorships". Professor is most definately not a comparable term.

So the upshot is that, in autism, the research is measured by comparison with other cohorts doing the same thing. Study populations and lack of controls, largely through observing individuals currently or recently attending clinics can be perfectly acceptable, whereas other scientists are staring in disbelief at how noddy the research is.

The trouble is you cannot - indeed must not - criticise other disciplines, and you can lose credibility if you get caught working cross discipline and criticising.

Consequently research on autism could be appallingly poor. But nobody is in a position to do anything about it.

So yes they should be looking at many adults on the spectrum in a range of day to day environments under scientific procedures.

But no they're not....not even remotely....

The problem of research following people is that the research cohort, in respect of autism, is rather remote from the professions they serve. This is because they are publishing in professional journals paid for by societies whose members are mostly practitioners - GPs, psychologists, psychiatrists etc.

The actual research cohorts are few and small - key ones include Cambridge and Sheffield. And they are involved directly with people on the spectrum, which makes the results seem all the more peculiar.

Because most of the practitioners out in the real world may only occasionally treat people with autism, and even then it is more likely they are treating someone for depression or psychiatric complications who just happens to be on the spectrum.

Of the autism research cohort you'd expect them to have a very good knowledge of autism because they are usually centres which also diagnose and support people on the spectrum. So why aren't they more switched on?

Well for one thing where does the money come from that pays for research? In psychiatry and psychology there are panels of experts who determine the basis for diagnosis and care and treatment and cure of conditions. I suspect the research is funded to support the status quo - in other words - there's little or no money around to go off and be innovative or find out something new. I suspect in psychology and psychiatry you have to stick to fairly narrow rules, or else go and research something less critical like the paranormal or people's responses to music.

The other problem is the quality of research. It puzzles me that the populations (numbers of individuals on the spectrum) studied in these research papers is incredibly small, occasionally less than 10 and seldom more than 30. In most academic disciplines such study populations would be deemed way too small to be accurate. Moreover there seem to be few controls on the variables in these populations - we don't know whether they are sufficiently comparable. We are talking in terms of what would be for most scientists totally unacceptable study populations.

I suspect these are the patients passing through the clinic attached to the research cohort at any one time, who might be on their books for a span of several years, who consent to being studied as part of their treatment. So they could have all kinds of comorbid and secondary conditions. Moreover the actual research may be equally questionable - poorly structured questionnaires, poorly regulated observations, incomparable measurements etc. I doubt if the research would be acceptable to most scientic disciplines.

So what's going on here? The public at large probably assume that universities and internationally recognised institutions set the standards across all disciplines. And universities aiming for top research rating have the same standards across all subject areas.

The reality is that the standards are set by respective peer groups across those subjects in other universities, not centrally. So the quality of research between disciplines varies enormously. To some extent this is inevitable as the evidence may not be comparable. Many arts researchers are dealing in video recordings, portfolios of work produced etc., which have to be assessed on quality and originality.

In most sciences, in order to compete at the top research ratings, individual researchers have to produce numbers of very high standard research papers and it is very hard to get a readership or a professorship. In other subject areas readerships and professorships are handed out for ludicous reasons - some subject areas having appallingly low standards. The problem is, assessed across univesities, a subject like say archaeology, can achieve top rating for work that wouldn't qualify for an A Level, and readers and professors have hardly any internationally recognised papers by normal standards.

It leads to a lot of cross disciplinary resentment. Some academics have to work incredibly hard to get a professorship, other disciplines really seem to give them away, leading to accusations of awarding "plastic professorships". Professor is most definately not a comparable term.

So the upshot is that, in autism, the research is measured by comparison with other cohorts doing the same thing. Study populations and lack of controls, largely through observing individuals currently or recently attending clinics can be perfectly acceptable, whereas other scientists are staring in disbelief at how noddy the research is.

The trouble is you cannot - indeed must not - criticise other disciplines, and you can lose credibility if you get caught working cross discipline and criticising.

Consequently research on autism could be appallingly poor. But nobody is in a position to do anything about it.

So yes they should be looking at many adults on the spectrum in a range of day to day environments under scientific procedures.

But no they're not....not even remotely....