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suicide risk and people at the abler end of the autistic spectrum

longman

This might look a bit technical, but it is an important question. How representative is research on autism?

I have come across one or two reports which seem to point to there being a risk of suicide or attempts at suicide particularly amongst adults at the abler end of the autistic spectrum who don't show any other evidence of being at risk.

The problem with these studies is they refer to very few previous reports of this phenomena, and therefore cannot make a strong case. But their inference is that people who are abler are more likely to be working and living in environments where their disability affects them so adversely.

Currently there is a lot of research ongoing into suicide risk amongst adults on the spectrum who suffer significantly from depression. There have been a lot of published papers in the last year.

It might be deduced that the research evidence disproves a risk in abler adults not manifesting depression.

However looking through such research the autistic populations being studied are very specific to one research centre, or one diagnostic service, or one diagnostic method. There doesn't seem to be a lot of research from the broader population of people diagnosed on the autistic spectrum.

I can understand the constraints on research in accessing data nationally, but if some studies are too specific, is there any way of ensuring that there is a proportion of research carried out on more general populations.

The risk otherwise is that overly specific groups of research subjects yield misleading results.

Usually the procedure for research using restricted populations is to set down the limitations of any given study population. This is one way of flagging up the need for other populations to be studied.

It is very important in autism that research looks at a representative enough group of people.

Parents

  • I understand the issues around sample size and generalisability to the wider population/others with a shared characteristic. Sorry if my post has detracted from your original post specifically about suicide risk. I realise I was responding to your latest post, rather than the context of the full thread. Also, where I first read about this survey was among people who were highlighting the discrepancy between their preferred terminology for themselves (as autistic adults) in contrast with NAS continuing to use "people first" terminology, therefore putting professionals' preferences ahead of those of autistic people. So this is what stood out for me on reading your post. I also find it useful to let people know where to find information when referring to it in a post. As I was confident this was the same survey I had seen, I wanted to offer the link for others to read it.

    In a way the issue of terminology and representation in the survey ties into your original question "how representative is research on autism?" Single studies are never sufficient - results should be reproducible by others and with sufficient sample sizes. It could also be that the sampling method introduces a bias e.g. online surveys being accessible to computer literate people, so autistic people who don't or can't communicate in this way don't get a say or someone inputs answers on their behalf - another bias. In areas where evidence needs to be gathered (such as suicide and autism, as you have identified), there can subsequently be a systematic review to help eliminate anomalies and flaws in research. From what you have said, it looks like there are clear gaps which need to be addressed in future research. Any research conclusions should acknowledge limitations, including three extent to which findings are generalisable beyond the sample group...not that that always happens. And others reading or citing research may also miss these things when critiquing it. As you say, measuring the needs of the right people is essential - this helps to reduce all these other problems with the whole research process.

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  • I understand the issues around sample size and generalisability to the wider population/others with a shared characteristic. Sorry if my post has detracted from your original post specifically about suicide risk. I realise I was responding to your latest post, rather than the context of the full thread. Also, where I first read about this survey was among people who were highlighting the discrepancy between their preferred terminology for themselves (as autistic adults) in contrast with NAS continuing to use "people first" terminology, therefore putting professionals' preferences ahead of those of autistic people. So this is what stood out for me on reading your post. I also find it useful to let people know where to find information when referring to it in a post. As I was confident this was the same survey I had seen, I wanted to offer the link for others to read it.

    In a way the issue of terminology and representation in the survey ties into your original question "how representative is research on autism?" Single studies are never sufficient - results should be reproducible by others and with sufficient sample sizes. It could also be that the sampling method introduces a bias e.g. online surveys being accessible to computer literate people, so autistic people who don't or can't communicate in this way don't get a say or someone inputs answers on their behalf - another bias. In areas where evidence needs to be gathered (such as suicide and autism, as you have identified), there can subsequently be a systematic review to help eliminate anomalies and flaws in research. From what you have said, it looks like there are clear gaps which need to be addressed in future research. Any research conclusions should acknowledge limitations, including three extent to which findings are generalisable beyond the sample group...not that that always happens. And others reading or citing research may also miss these things when critiquing it. As you say, measuring the needs of the right people is essential - this helps to reduce all these other problems with the whole research process.

Children
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