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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

  • Many thanks for the supportive feedback.

    It is clear from the feedback that people can be misdiagnosed, and part of the diagnosis problem is whether the triad adequately describes living with autism, when its purpose is to distinguish autism from other conditions like bi-polar or schizophrenia.

    The obvious example is the much neglected subject of sensory overload and meltdowns, which in the literature on autism is almost invisible. It isn't covered by the Triad because it can be explained by other conditions, and there are likely to be people who don't comfortably fit the Triad, but who have sensory issues, who consequently aren't diagnosed as ASD.

    Logically therefore people who aren't getting helpful diagnosis or support are likely to be under stress that could lead to suicide, but aren't being included in studies.

    The problem has surfaced this month in the paper "Which terms should be used to describe autism? - perspectives from the UK autism community" Kenny et al in 'Autism'.

    This was a study in 2013-2014 using survey monkey, to find out how people preferred to be described. The results gauged four cohorts - people with autism (numbering 502), parents of people with autism (2207), professionals (1109) and friends & family (380).

    The number of people with autism sampled is third smallest, and indeed that and the numbers of friends & family together total less than the number of professionals sampled, who in turn are less than half the number of parents. The high return from parents reflects that fact that NAS is basically a parents organisation.

    Less than 12% of those reached had autism.

    Given the survey is about "how people with autism preferred to be described" there is something significantly wrong when nearly 9 out of 10 respondents aren't in that category.

    If we are trying to help people with autism deal with issues like suicide, we surely have to measure the needs of the right people.

Reply

  • Many thanks for the supportive feedback.

    It is clear from the feedback that people can be misdiagnosed, and part of the diagnosis problem is whether the triad adequately describes living with autism, when its purpose is to distinguish autism from other conditions like bi-polar or schizophrenia.

    The obvious example is the much neglected subject of sensory overload and meltdowns, which in the literature on autism is almost invisible. It isn't covered by the Triad because it can be explained by other conditions, and there are likely to be people who don't comfortably fit the Triad, but who have sensory issues, who consequently aren't diagnosed as ASD.

    Logically therefore people who aren't getting helpful diagnosis or support are likely to be under stress that could lead to suicide, but aren't being included in studies.

    The problem has surfaced this month in the paper "Which terms should be used to describe autism? - perspectives from the UK autism community" Kenny et al in 'Autism'.

    This was a study in 2013-2014 using survey monkey, to find out how people preferred to be described. The results gauged four cohorts - people with autism (numbering 502), parents of people with autism (2207), professionals (1109) and friends & family (380).

    The number of people with autism sampled is third smallest, and indeed that and the numbers of friends & family together total less than the number of professionals sampled, who in turn are less than half the number of parents. The high return from parents reflects that fact that NAS is basically a parents organisation.

    Less than 12% of those reached had autism.

    Given the survey is about "how people with autism preferred to be described" there is something significantly wrong when nearly 9 out of 10 respondents aren't in that category.

    If we are trying to help people with autism deal with issues like suicide, we surely have to measure the needs of the right people.

Children
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