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

Another aspect of the problem is the amount of research that is PhD related. That is not to say that research for a PhD doesn't contribute to broader knowledge fronts, especially as the research may be one of a number of students taking part in a research team. And the student may go on to be a distinguished expert on autism.

However people need to know if they are volunteering as participants or answering surveys for a research group trying to find out about autism, rather than someone trying to complete a degree.

It is a bit like signing a consent form in a teaching hospital to the effect you are happy that your treatment will be attended and observed by students.

A lot of requests for research volunteers are disseminated through NAS local groups. Seldom is it stated that the research is for a PhD.

People may think they are helping to advance the frontiers of autism understanding, when to a large extent all they are really doing is helping someone get their degree. Not the same thing.

And it is no better than the barrage of undergraduate dissertation students on here trying to get people to be stooges for their final year project.

Sadly people with autism seem very unlikely to be consulted or a participant in research actually funded to advance understanding of autism, unless they come from a very narrow cohort.

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.

Marjorie, your last paragraph is exactly my experience. I was 'diagnosed' as Bipolar. I never agreed with it and said so whenever I had the opportunity. I was then negatively labeled as 'uncooperative' and 'not wanting to get better'. I've had every pill known to them as treatment for my condition, and while these pillocks were fiddling about, my life was poo to the point where the only reasonable option seemed to be suicide.

Hurrah for my new GP! After knowing me for some time, she volunteered to me that she agreed with me - she couldn't see Bipolar and referred me for reassessment. After a lot of trauma caused by yet another ignorant 'psychiatrist' I was finally referred to someone who actually knew what he was doing, and got my diagnosis.

Since then, I still have my moments but they have less impact on me because I can just keep telling myself that it's 'of the moment' and that it will pass. Clearly, then. there are two aspects to this subject and you and Longman have it nailed. If you only examine suicidaly depressed people, but don't re-examine long term mental imbalance in people, who have presented themselves for examination, then a sub-group is bound to be ASD. This is meaningless information. You'd have to trawl the entire population, and they would have to be honest (won't happen!) before you could definitely state that higher functioning, or any other type, ASD increases the suicide risk.

I think that the biggest suicide risk with ASD is the abuse, lack of understanding, difficulty getting a diagnosis, and generally not being listened to, that can make suicide an attractive option. It was so for me, I'd rather kill myself than go through that again.

What about all those undiagnosed adults, say over 30, who fell through the net. I believe there was an upturn in diagnosis in the late 90s. The suicide risk, I suspect, is much higher in this category.

I often wonder if serious efforts are being made to look again at those with long term mental health problems, and diagnosis of personality disorder and the like, to see whether they are in fact on the spectrum. My experience of mental health services is that "labels" stick and any attempt to challenge them is regarded as "lack of insight into ones condition".

It might help to look at other contexts.

A lot of research on autism in the past was based on people receiving interventions - eg people being treated for depression who had autism, people being treated for OCD who had autism.

The risk when using such groups of people is that the only people studied are those with depression or OCD. The study would not include people who disn't show depression or OCD. So the research could come up with findings that only affected people with depression or OCD.

Such research might deduce things about autism that were not true for people who weren't significantly depressed or significantly affected by OCD.

Although nowadays there should be safeguards to prevent this, research within specific groups, distinguished by being treated by the same people or being diagnosed by the same people, is that important characteristics in the wider population might not be represented in that very specific group.

Hence research always using the same specific group might be inaccurate.

For example, if people with depression form a study group on suicide, they aren't going to reveal anything about suicide potential amongst people who don't have depression. Indeed it might be very hard to include people who are able, in long term employment, under such pressures UNLESS they had needed interventions beforehand, such as for depression.

If the people studied were only people who paid for a private diagnosis, many people in that group who can afford such a diagnosis are perhaps more self assured and self confident and less likely to have a suicide risk.

It might actually be very hard to research people at the abler end with no other complications who might be predisposed to attempt suicide.