Are the messages about autism compromised?

The trouble is our experiences don't get reported back to the medical world, or anyone else that influences outcomes.

Medical Journals are mostly published by professional bodies - that's what funds them. Members, whether they read all the content, or no more than skim read it, which is worse, apparently want the best in internationally refereed research to be published by them.

Our concerns just wouldn't make the grade even as a footnote in such journals.

If professionals don't willingly read the stuff produced, they probably have to go to professional discussions where they work, that review current developments.

More worryingly too, journaslists read and review these articles, and pick up on the hot stories, which will be things like dietary choices or claimed cures etc that will appeal to newspaper and magazine readers. For example the person found naked recently at a care home for people with autism.

The trouble is most of these papers are written by research teams in very tiny research areas. Universities have to produce a lot of internationally refereed published papers to stay high in the league tables. The actual subject matter may only be read by the members of one or two competing research teams internationally. To read most academic papers you need to be a regular reader of that line of research, otherwise you wont know the context or the jargon.

The people who published a research paper on children growing out of autism, there may not be any other teams researching that. To challenge the claims another research team has to set up another data set, either existing data used a different way, or fresh measurements, which may take years. Even if another research team has researched this area and can contradict, they have to write a paper to the required standards, get it past international referees who may force several rewrites, and it may be months or years before a counterclaim gets into the same journal. 

Know I don't suppose the publishers or the readers or the contributors to the Journal of Child Psychology and Psychiatry care a jot about the impact of that paper on people with autism and how they get treated.

That paper has set back years of effort by organisations like NAS to fight such myths. And the claims made in that paper will be used to reinforce old established myths about autism. 

The professional bodies who print this junk - and it is often junk (as for all the refereeing the quality of research and its reliability is often lost in procedure), are quite devoid of ethical responsibility. They couldn't care less.

And as for the paper in the British Medical Journal, same applies. Whatever anyone says, there's an authoratative paper that says autism is now on the downturn. It backs the drive to reduce diagnoses and cut back on services to people with autism on economic grounds.

And does the British Medical Journal care? I doubt if morals and ethics come into it. Its about publishing papers that look good that's all.

The trouble is our experiences don't get reported back to the medical world, or anyone else that influences outcomes.

Medical Journals are mostly published by professional bodies - that's what funds them. Members, whether they read all the content, or no more than skim read it, which is worse, apparently want the best in internationally refereed research to be published by them.

Our concerns just wouldn't make the grade even as a footnote in such journals.

If professionals don't willingly read the stuff produced, they probably have to go to professional discussions where they work, that review current developments.

More worryingly too, journaslists read and review these articles, and pick up on the hot stories, which will be things like dietary choices or claimed cures etc that will appeal to newspaper and magazine readers. For example the person found naked recently at a care home for people with autism.

The trouble is most of these papers are written by research teams in very tiny research areas. Universities have to produce a lot of internationally refereed published papers to stay high in the league tables. The actual subject matter may only be read by the members of one or two competing research teams internationally. To read most academic papers you need to be a regular reader of that line of research, otherwise you wont know the context or the jargon.

The people who published a research paper on children growing out of autism, there may not be any other teams researching that. To challenge the claims another research team has to set up another data set, either existing data used a different way, or fresh measurements, which may take years. Even if another research team has researched this area and can contradict, they have to write a paper to the required standards, get it past international referees who may force several rewrites, and it may be months or years before a counterclaim gets into the same journal. 

Know I don't suppose the publishers or the readers or the contributors to the Journal of Child Psychology and Psychiatry care a jot about the impact of that paper on people with autism and how they get treated.

That paper has set back years of effort by organisations like NAS to fight such myths. And the claims made in that paper will be used to reinforce old established myths about autism. 

The professional bodies who print this junk - and it is often junk (as for all the refereeing the quality of research and its reliability is often lost in procedure), are quite devoid of ethical responsibility. They couldn't care less.

And as for the paper in the British Medical Journal, same applies. Whatever anyone says, there's an authoratative paper that says autism is now on the downturn. It backs the drive to reduce diagnoses and cut back on services to people with autism on economic grounds.

And does the British Medical Journal care? I doubt if morals and ethics come into it. Its about publishing papers that look good that's all.