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Research on autistic spectrum

longman

I'd like to find out why research on autism seems to be confined to what I perceive to be an unrepresentative population.

If you are trying to research a subject population (ie people on the autistic spectrum) you would expect the researcher to look at a representative population unaffected by cross-contamination with other parameters.

"Cross-contamination" may sound a bit harsh, but if only populations of people on the autistic spectrum who have comorbid or secondary conditions are studied, how can the researcher distinguish which behaviours are directly due to autism rather than an associated condition.

Yet most research is being carried out on people on the spectrum with comorbid conditions. A large section of the potential study population, because they are abler or have better coping strategies or are outside the definition of disabled are currently excluded from research. This is so despite the fact that they have less comorbid or secondary issues and their symptoms/manifestations can be more clearly identified as down to the autistic spectrum.

Take as an illustration "lack of empathy". This is considered both a diagnostic criteria and a definitive characteristic of people on the autistic spectrum. Yet there are many people out there who are able to care for others, and act very effectively in situations that might be deemed impossible due to the lack of empathy.

However if someone has poor social interaction, including poor eye contact and difficulty processing or interpreting social interchange, it follows they may have difficulty manifesting empathy BECAUSE of the social interaction deficit, rather than "lack of empathy" being a primary characteristic.

But how can researchers investigate this if they only study a narrow range of people on the spectrum and especially those with comorbid or secondary conditions?

This is failure in basic scientific good practice. If the populatiion studied is skewed or compromised, the research results and the outcomes of the research can only be unrepresentative.

Yet we continue to see scientific prodedure ignored by researchers on autism. It is very disappointing. 

Parents

  • This issue is slightly different but crops up quite often. Its about the beaurocracy of social services - you have to have a label centred on the primary diagnosis.

    How this affects the treatment of anorexia I cannot say, as I don't suppose there are statistics to show whether people diagnosed primarily with anorexia get different treatment or outcomes from those primarily diagnosed with asperger's.

    Another example is dyslexia, which often comes as part of the asperger "bundle". I do worry that the dyslexia side of things in education is undersupported if a student is primarily defined by asperger's.

    Asperger's rarely exists on its own. However towards the milder end people are less likely to have secondary or comorrbid conditions. The irony is those at the milder end, whose asperger's symptoms may be less marked, aren't being studied. The research is biased to those with other complications, which makes it very hard to distinguish what is down to asperger's and what is down to an associated condition.

    So my research question equally applies to your concerns. Thanks.

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  • This issue is slightly different but crops up quite often. Its about the beaurocracy of social services - you have to have a label centred on the primary diagnosis.

    How this affects the treatment of anorexia I cannot say, as I don't suppose there are statistics to show whether people diagnosed primarily with anorexia get different treatment or outcomes from those primarily diagnosed with asperger's.

    Another example is dyslexia, which often comes as part of the asperger "bundle". I do worry that the dyslexia side of things in education is undersupported if a student is primarily defined by asperger's.

    Asperger's rarely exists on its own. However towards the milder end people are less likely to have secondary or comorrbid conditions. The irony is those at the milder end, whose asperger's symptoms may be less marked, aren't being studied. The research is biased to those with other complications, which makes it very hard to distinguish what is down to asperger's and what is down to an associated condition.

    So my research question equally applies to your concerns. Thanks.

Children
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