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

I think this has some interesting information so will raise it again as I struggle greatly with suicidal feelings as I have messed up real bad,let down my family, career ended. treatment failed, feel doomed

So why do we still have the problem - that suicide is identified with depression rather than with autism? You have to be depressed first before you can be considered a risk for suicide.

Do Samaritans understand this?

The problem we have, which NAS seems unable to grasp, is that all the money on suicide risk research goes on suicide in relation to depression, even when considering autism. They think the suicide results from depression even if that resulted from autism. There is nothing out there verifying a connection between autism and suicide, without depression.

Yet many abler aspies report suicidal feelings and commit suicide BECAUSE the autism causes so many social difficulties.

OK in Classic Codger's situation the relationship is bipolar and suicide - but the situation is the same in that autism isn't being considered a direct cause.

And as Classic Ciodger says, we aren't being understood. So it depresses me that NAS still doesn't understand that autism can directly cause suicide.

Hi Classic Codger,

Thanks for contributing your experiences to the Community and we're sorry hear that you are going through a difficult time.

We hope that you know that you are not alone in these challenges and remember there is support out there if things get too difficult.

The Samaritans provide confidential non­judgemental emotional support, 24 hours a day on  08457  90  90  90 (or  1850  60  90  90  in  the  Republic  of  Ireland),  or  by email on jo@samaritans.org. MIND have information.

If  you  need  help  with  an  autism  related  issue,  our  helpline  can  be  emailed on autismhelpline@nas.org.uk or they’re open Monday to ­Thursday 10am­ to 4pm and Friday 9am to 3pm on 0808 800 4104.

Take care!

Avi

I've been suicidal for most of my adult life. I count it as a 'win' if I have a day where it hasn't crossed my mind. I woke up in hospital one time and cursed them loud and long for treating me against my will ('have the treatment or we'll section you and force it on you') and they wouldn't leave me alone untill one of their useless 'psychiatrists' had talked to me.

It's with me for most of the time, and waxes and wanes in intensity. Interestingly, this led to my diagnosis of Bipolar, and although it never fitted me, once given, they insisted on it. The result is that for many years I've wasted NHS resources trying to get help with something that I now know to be ASD, but at the time all I knew was how I felt, untill finally I got a GP who made the effort to 'get' me, agreed with my rejection of the Bipolar diagnosis (others just said I was recalcitrant about it) and refer me for proper diagnosis.

Interestingly, both the frequency and intensity of those thoughts have markedly reduced since I got my diagnosis, especially because I can come on here to talk and listen to others who are like me - the reduction in feeling, and being, missunderstood, alone and isolated is the specific reason for this.

It is because of my current GP that I can say this, but I've spoken to any number of GPs and psychiatrists in my adult life, any one of whom, with a little interest, could have helped. Certainly, I couldn't be expected to articulate what was happening to me when I couldn't know, yet there is this fundamental aspect of diagnosis that expects the patient to say what the problem is.

Caught in this cleft stick, suicide was, to me, the only practical solution to ending the misery of my daily existence, and became highly attractive to me. Given our penchant for obsession...

Apparently, we don't give out the signals that non-AS people give, so 'they' don't read 'us' in the way that they read each other. I think the NHS completely misses the point about how AS people experience their world anyway, so it doesn't surprise me that they don't get this at all, but what's worse is that (my current wonderful GP excepted!) they mostly don't even bother to listen when we tell them.

I wouldn't like to add up the waste of NHS resources that ensued from my constant visits to GPs etc, but I also resent the waste of my life that ensued from my unresolved search for an answer. You put your trust in trained people, and they let you down through sheer lack of interest or effort. Good grief...

On the up side, we're here, we know now, and we can advocate for our youngsters and help improve diagnostics - no lack of effort or interest here.

I have looked on the internet at this idea that people decide to take their own life, without showing outward signs of distress. The americans have coined the phrase "suicide attacks" ; a sudden overwhelming desire to end one's miserable existance.  It comes on a bit like a panic attack, but is just an overwhelming impulse to stop living.

When life is a daily grind of stress, failure, rejection, bullying, lonliness, is it any wonder if we suddenly decide enough is enough, why am I still here.

While medical proffessionals and those who offer community support have the idea that people on the spectrum prefer to be alone, and are just mildly autistic so not actually mentally ill, then is it any wonder that real hopelessness sets in and lives are lost.

As the foregoing dialogues reveal, the meaning of autism has become blurred.

I have recently come across the charity Papyrus (www.papyrus-uk.org) This is a national confidential helpline for young people contemplating suicide, or not coping with life. The service is called HOPEline.

This was a presentation at a health meeting, and afterwards I asked the speaker about autism. Maybe they misunderstood me, and I don't want the organisation to feel I'm misrepresenting them - this is just what came back to me in an informal chat.

I explained my concerns about more manageable autism giving rise to suicide risk without intermediate signs of depression, just because of the life difficulties. What I think I was told was - they only deal with young people with marked autism.

This is an organisation that purports to help any child not coping with life and having suicidal thoughts, but where autism is involved - mild autism doesn't count?

The problem, as the posters above have explained, is that anything less than full-on autism, no speech staring at the wall and rocking, seems to have entered the public perception as making excuses for naughty children, grumpy teenagers and failing young adults.

In the context of suicide this is really worrying. Oh we don't count anything autistic if the person approaches living an independent life because then they are cured and it doesn't matter any more..........

And NAS really needs to address this seriously. I don't think NAS is as committed to young poeople at the abler end as they make out.

How can manageable autism not count as a factor in suicide risk?

Hi Marjorie,

Thanks for clarifying that for me, I was struggling to understand your point and in answer to your question I have been in the position of having to manage my sons behavioural outbursts, both in private and in Public and you are right, it doesn't get better with age/adulthood. (I didn't see 'Born Naughty,' incidently.)

With regard to the not knowing when to ask for help or even about understanding your own emotions, I can appreciate that. Asking for help has never come easy to me, yet you do also feel that you are very much on your own in managing your childs and your own issues, post diagnosis. I had little or no guidence at the begining for my boys and even less ongoing support.

I've had a good go at introspection over the past year and know more about myself now, than I did, yet applying any strategies to help myself when I plumet, is still often a struggle.

In the coldest sense, I can look at my children objectively, identify the issues and look at strategies to help them, and although I am now able to see my own issues in a similar way, I struggle to apply them for myself, if you get my drift. Having the incite and the ability to help others, yet not always managing to proactivily help oneself is a crippling thing I find. Does anyone else experience this?

Unlike yourself, In my lowest ebb, even my children were not enough to bring me back up. I'm ashamed to say it, but life was so bleak that nothing touched me. I suspect my brother experienced something somewhat similar as he was so absorbed in his own depressive episode that he didn't even realise the day he took his life was also his partners birthday. Knowing him as I did, I'm sure he wouldn't have wished to mar that date for the rest of their days on this earth.

Re Classic Codgers comments, I think I get what you are saying, but I guess what i'm trying to say is that i'm struggling to 'fully' relate to it. I think my misunderstanding of Marjories point, has probably muddied the waters somewhat. I thought that she was implying that all those with badly behaved children were trying to label it as ASD. 

If I can just explain. In my own case and unlike my mother; who had extremely poor parentinng skills to the point of child neglect at the extreme, i have been extremely proactive as a parent with my children and if i've struggled with a particular issue then I've looked again at my methods and tried a different tack. Furthermore, I've worked hard on empowerment and awareness of personal responsibility with my children to help them have a sense of cause and effect and the consequence of their actions.

Yet my own efforts to support my children and give them the tools that can enable them, by first learning about their limitations, could easily be misinterpreted by others, im sure.

Perhaps I subconciously over compensated in my parenting efforts to ensure that neglect didn't ever show itself in my own family, by ensuring that my children were well cared for, but in no way has this interfered with ensuring they had solid boundries. This however, as many will know, does not equates to having a child without meltdowns. Indeed I'm told, meltdowns often occur in an environment that the child is and feels safest in.

However, I find myself questioning what affect this proactive parenting has really had in helping my sons with ASD. It seems to have worked for my other children who don't have it. So what are the effects on those that do have ASD?

I attribute my own caring ability and parenting skills with growing up in a different household to that of my siblings. I saw how things should be done and learnt from it, as you suggest, yet of the two I have with Aspergers, I still have a child with extremely challenging behaviour (Often agressive verbally) and the 'success' of my parenting skills with the other has ensured that although he can now conduct himself in public without public display, the internalizing of his anxiety and meltdowns often results in constant illness.

I knew nothing about Autism before my childrens diagnosis and my level of fighting was not so much over obtaining a label or diagnosis, as having them assessed in the first place. In fact when it was first suggested to me by the professionals that my son had autism, I instantly rejected it. Even after their diagnosis i rarely discussed it with anyone beyond the professionals who worked with them in a given therapy or their educational environment. In retrospect, I realize I retreacted quite badly to it.

Like you Classic, i have suffered much illness myself for the same internalization issues that my son suffers and life has been less about being indolent (I worked 2 jobs at one point) and more about chosing the type of work that kept stress and illness to a minimum. Often low paid, often menial, often puctuate with illness if the stress got too much.

On your coments on 'the ability to breed makes them 'parents', I'm not sure how I feel. Complex issues surround parents with ASD. Single or otherwise. I have been both, but what I can say is that following the death of my former partner, I was lost and alone for a long while and later began to realise that I often needed to be on my own and struggled to manage the needs of any relationship beyond that with my children. I'm not sure that makes me a bad parent as such, merely one that was probably already at the limits of capacity. 

I guess what I was trying to say about running for cover, is that although I'm often filled with bravery and encouragement for my children, I live most of my own life in fear and this can be incredably crippling. This fear is not necessarily founded on something 'I' originally fear, but others reactions to a situation or story, that then cause me to feel fearful.

I am, by nature, very naive and this naivity has caused me great harm in the past. Because I've so often had to take my ques from others reaction to things to guage my own safety (Whom I saw as more able and aware than myself) I can often adopt others fears even though they don't apply to me. This causes me to ruminate over possibilities that would probably never happen to me.

This, coupled with my terrible life experiences has probably contributed to my deeper levels of depression.

I cannot concur however, with your statement that "it follows that it would be less likely (but NOT unlikely) for girls to suffer the same intensity of internal conflict that boys do when we try to 'hide' ourselves."

Longman maybe able to help me here with the study, but i read recently that women with ASD appear to live significantly shorter lives than men. Not as a result of suicide, but as a result of stress. Whilst this may appear to affect the figures in relation to both men and women and the incidence suicide, it probably won't take into account the higher amount of early deaths attributed to stress related illness of women with ASD. It seems more likely therefore, In my opinion, that the intensity of internal conflict may not be less, but in fact maybe maifesting itself differently in women than in men.

Once again, although anecdotal, my mother; an undiagnosed Aspie, would bare testiment to my theory, as she too died very prematurely due to stress.

Although I have respect for someone such as Tony Attwood, I do take issue with some of his schemas on the presentation of women and even on what he terms as Catastrophizing using the threat of suicide by some on the spectrum.

In my own personal experience it's always when I have reached my very lowest ebb that thoughts like suicide rear their head and always when my comminications that I'm struggleing to cope have not been understood as genuine statements of need. Again, it's like you are not being taken seriously. In these instants, I'd be much less likely to Catastrophize or shout about it and more like (As my brother did) to act on it.

Through fear of being labeled, stigmatized, sectioned or hospitalized, many (Particulaly women) will play down their degree of mental health issues in order not to draw attention to themselves.

The nature of the subject, much like trying to record the incidence of drug and alcohol misuse amoungst the ASD population, makes it very difficult to glean accurate information statistically. I suspect we would have to lift the prejudice on many more levels than just ASD and the incidence of suicide and suicidal thoughts before people would become more open on the subject.

Can I also say. Tony Attwwod covers very little on the subject of suicide in his book. Given that he's a professional in the field, it seems odd that this issue has very little coverage.

Food for thought and interesting to get such diverse views. As the academic, perhaps Longman would like to conduct a small study on the issues raised?   

I too am alive because I had children, my daughter was not so lucky. As an undiagnosed person, I have no voice, except perhaps here. I had none as a mother of what I now know was a girl with asd.

It may be convenient for the medical proffession to have one global label, but they did not, apparently consider the views of the bearers of that label, equally with those who give the label to their patients.

Many medical conditions have their scientific names and common names. Could this not apply to asd? Maybe the NAS should be asking it's website users what they would prefer. After all, each winter, when I catch a cold, no one expects me to call it an upper respititory tract infection, do they.

Hello all. I'm finding this thread a little confused, considering how important this subject is. Please allow me this:-

Firstly, may I explain that, without going into a long description of the why's and wherefores, I have managed to have some semblance of a career in Social Housing. It sounds odd, even to me, that an Aspie could do this at all, but please trust that I found a way. There are two aspects to this that you may find helpful.

1. You all know about workplace and relationship problems - I had them all.

2. I had a huge number of people to watch.

I might in future tell you about some of the fascinating people I've met who were living in Social Housing, from war heroes to murderous thugs, you'll hopefully be astonished. Mainly I hope I can astonish you by destroying some of the public misconceptions about what Social Housing is, and who needs it. If you can think of a 'type' of person, I can tell you a story about one in housing I have managed.

Now here's why this last point is relevant. One 'type' I've seen is the 'typical (i.e uninformed but propagandised public conception of) single parent. I understand that people, myself included, think the ability to breed makes them 'parents'. If you don't know what the difference is, stop reading this. One thing I observed was that a small proportion of them are lazy and indolent.

When ADHD became 'popular' in the way that we're discussing here, I saw what an 'easy' excuse it was for those same people to adopt, as it allowed them to ignore the paucity of their parenting skills, or more precisely, the consequences of their parenting skills as exhibited by their children. If you are a single parent, then you know the impossibility of fulfilling both parenting roles, but it doesn't stop you trying. These are people who don't know how to try, and it extends to most aspects of their lives.

I've attended what are called 'case conferences'. If you don't know, these are meetings, usually called by Social Services as a part of their involvement with a particular person or family, to bring together the people who are involved with that family (housing professionals, doctors, health visitors, CPNs, teachers etc) where their family 'problems' are discussed. Unskilled parenting was often identified as a contributing factor, not as a 'blame' thing. It was more about recognising that the 'style' of parenting we apply is learned from our parents. We are, and do, that which we know.

It may seem obvious, but it still helps to remind ourselves, that a truism for everyone, always, is that we can only apply what we've learned. By definition then, we cannot do those things that we have not learned to do. Parenting skills are no more or less learned than any other skill.

In its' time, ADHD became a popular excuse for some. I noted that these people often thought that they were being deliberately mistreated in not getting the diagnoses that they wanted, rather than accepting that they were wrong in the first place. I can guarantee that the same is now being done with ASD. In both cases, it is attempted by people who have only the vaguest grasp of the condition they're claiming. Thus, when their child 'misbehaves', they are both unwilling and unable to look at themselves first.

As far as professionals are concerned, these people not only exist, but also make it more difficult to separate out the genuine cases. This happens, I've been there. I therefore have to take issue with Coogybear and support Marjorie's view. Just because you haven't seen it doesn't mean it doesn't exist.

I now have to support Coogybear's other, more relevant point. Yes, the masking tactics we have to adopt do indeed sometimes drive us so far inside ourselves that we plummet to a depth where self destruction becomes attractive and desirable. This happens, I've been there. I can look back now and say that I'm glad it never worked, but I still sometimes have the minute by minute intense struggle not to self destruct.

So, I have to answer Longman's starter question with a yes. I think that there is a much increased risk of suicide, for men at least, by the very nature of the conditions that we live with. I'd like to note, here, that men are statisicaly shown to be far more likely than women to commit suicide anyway. I have no information as to whether the methods chosen by women are more likely to be attributed to other causes because of the way that they do it. By definition, we cannot know this. Ladies, do you have a view?

I'm currently discussing with belles12345 the diificulties of diagnosing girls. I've read in Tony Attwood that girls, because of their nature, find it easier to 'camouflage' their behaviour than boys, and that this makes girls so much more difficult to detect.

It therefore follows that it would be less likely (but NOT unlikely) for girls to suffer the same intensity of internal conflict that boys do when we try to 'hide' ourselves. It might even be the same for girls, except that something about them deals with it in better ways. This is what we need to keep talking about. I suggest that suicide rates support this view, but Longman asks the question of this assumption, and I agree. We lack properly widened out and fully researched information on the subject, and no-one seems to be taking it on.

Oh, and Coogybear, please may I say this? I too am late diagnosed. Like you, I've had a 'career' where just keeping myself 'hidden' has been exhausting, I certainly had to take frequent 'sick' breaks, some of them extending for months at a time, just to get my coping head back following a sort of 'meltdown majoris'. What dragged me along and back up was being the single working parent of three children whose needs kept me alive. Without them, I would not be here, I know this for a fact. I am sorry about your brother not making it back out of the bottomless pit, I feel for you.

Sometimes I just wish that the magic 'put everything all right' fairy would pop up and do her thing.

Hi Coogy, you have totally missed my point here. Those of us with ASD and our families, are not finding acceptance in the wider community, in which is the misapprehensions outlined above, all to frequently predominate.

I am undiagnosed as was my daughter. I had no idea why she had such tantrums, and if you have never been in a situation of drawing a group of spectators, who make comments like "I'll get a policeman to you, if you carry on like that" etc and you desparately want to extricate yourself and your children, before they start seeing the policeman as a person to fear, or worse still, turn their tantrum into aggression towards the interfering spectator, well, you are fortunate indeed.

Predudice is enormous, disbelief predominates, (see channel IVs born naughty) particularly when there is no diagnosis, just a parent at their wits end, disbelieved by family, friends, neighbours, aquaintances, passers by. It doesn't end in adulthood, with meltdowns continuing and an ever increasing string of broken relationships in the work place and at home.

If you follow my mental trajectory, you will see it is straight down into the bottomless pit, where suicide is all too common and we lack the verbal communication skills and understanding of our own emotions and often even lack the ability to ask for help.

I think that the "label" is a cheap way to help the world at large begin to accept the prevelance of autism.

The NHS has not got the finances to help us all, so money is targeted at children.

I may have misunderstood your point and I have re-read the above a number of times, but I'm not sure I concur with you Marjorie on your comment or it's relavance to a suicide thread.

I may be a little naive, but i'm not sure I know of anyone that would claim to be Autistic or Aspergers to excuse 'bad behaviour.' Additionally, having the label can bring with it it's own unique problems. Who would willingly want to open themselves up to that, to excuse behaviour? Far from acting out, most of the Aspies I know, myself included, work very had to get it right and to keep socially unacceptable behaviours hidden. The very thing that can often make them unwell if masked for too long or not given an appropiate or alternative outlet.

I think viewing Aspergers & Autism as a 'fashionable at the moment' is incredibly damaging and does little to acknowledge the huge steps made to both raise awareness in the wider community and to greater learn & understand the condition and all it's presentations. Not so long ago, anyone with mental health conditions or not condsidered 'normal' was institutionalized. Everyone, In the same open wards and largely medicated rather than supported for their individual, unique needs and remaining in the familiar and often nurturing surroundings of their family unit.

Of course it's possible some people are misdiagnosed, but i believe many more are undiagnosed. Autism isn't a new condition. It's been around for a long period  of time. It's our understanding of it that's lead to the greater numbers being diagnosed, not the fact that its fashionable, in my opinion.

Going back to the original thread, I'm of the opinion that it's not only our inabilty to cope with some of lifes difficulties that can be a factor in the contemplation of suicide in some individuals, but also the lack of understanding about our level of need and indeed, on occassion, the cynacism that accompanies it directed at us by others.

If you are not taken seriously in life by others, as in the case of my brother, what is the point? As with Electra's comments, I also believe an Aspies lows are very intense. The world needs to understand that and take it seriously if suicide numbers are to be reduced among the Aspie community. The need to be heard for most individuals is great, if you have a social communication difficulty, I believe the need is even greater.

Just to branch out a little, re the label "Autism"; years ago, autism was mentioned during some training I was doing. We were shown a film of a boy of about 8, who was twizzling a spoon in his hand. We were informed that he was unable to speak and became distressed at losing anything from his body, such as poo or hair, if it was cut. This stayed with me and prevented me from seeing autism as even remotely possible.

I have encounted other older people, who still think autism is this severe disability. Aspergers on the other hand, is seen as an invisible disability in more able people. I think that the rebranding of the higher functioning side of autism as just part of the autism spectrum, has had the effect of saying that autism would be visible, because autism is severe, and that perfectly normal but badly behaved children(parents) and adults are claiming to be autistic, in much the same way as gluten intollerance or allergy have taken off as fashionable.

The term Alzeimers is prefered to dementure, because it carries less stigma. Aspergers is prefferable to Autism because the general populace carry this historic view and predudice, of what autism is, hence less stigma again.

Well said electra.

This is a terrific thread and, paradoxically, it has cheered me up enormously. Even on this forum autistic people aren't in the majority and our concerns aren't raised that much, so its great to read such a well-reasoned and erudite thread on such an important topic.

My own feeling is that autistic people have deeper lows and higher highs than the neurotypical population. I think this is part of being autistic and not symptomatic of any sort of pathology or deficiency. However its not seen as normal so we are not taught the skills to cope with the lows and also we worry about displaying such 'abnormal' behaviour. This may lead to a higher incidence of suicide amongst autistic people.

But if research were targeted towards helping autistic people rather than helping people mine us for data to get their PhDs then it should be asking how autistic people cope with the lows, what gets them through, what instigates a bad patch, does it get easier with age etc. Answers to these questions would help us rather than perpetuate the idea that autistic people are deficient and unable to cope with life.

The reality is that every day we cope with stuff that would floor a neurotypical person. We're heroes not losers and we shouldn't forget it!

As you know, I am a late identified adult myself.

In a quest to learn more, I've been doing some considerable family research and it seems my family has a particularly strong line of those affected by AS.

My brother did commit suicide. And although un-diagnosed, his partner was a GP (Fortunately, very much in the know about Autism) and volunteered; unsolicited, that my brother was likely on the spectrum. My brother also had OCD. (This was many years before my own identification incidently.)

Given my own diagnosis now, the considerable difficulties also of my younger sibling and my personal observations and experiences with others in the HF area of the spectrum, I feel that suicide potential is definately greater among those with 'high functioning' AS (If I can use the term)

Of course this hardly represents definative data and Is clearly anecdotal, but does lend itself to some debate I believe.

In many ways my brother was stereotypyical Aspie. A creature of considerable routine, worked in IT, didn't like change, independant, high functioning and holding down a job he'd been at for nearly 2 decades.

The problem arose when a 'new boss' singled him out for ridicule. The pressure became too much and after a series of events where the boss turned up outside his house and began to follow him around, my brother became a virtual prisoner in his own home, cracked and took his own life.

This was clearly a case of bullying, although my brother had difficulty getting others to take him seriously at the time.

In my own case, suicidal thoughts were strongest prior to my diagnosis and seemed to become a viable option when life became too overwhelming for me. Given my lifes experiences, this has been more frequent than i care to admit and both as a result of serious trauma, but also as a result of everyday difficulties in coping with life.

It was one of my own severe depressive episodes and contemplation of ending it all, that prompted a referral for diagnosis and although diagnosis has now reduced my tendancys surrounding memory of trauma slightly, my everyday ability to cope with things i've always struggled with, has got worse. This could be due to the series of events close together of course, but I do get the impression that i'm fast reaching my overall capacity to cope, dispite my outward appearance of being able to.

The influences involving suicide or suicidal thoughts have so many factors to consider and although i agree that groups should be proportionately represented in numbers, how do you factor in age, sex, gender presentation, race and hormones, which may all play a part. With so many factors, how do you come to represent all. I maybe missing the point her, but are numbers the only factor?

Women for example, by definition are far more likely to mask most of their lives and therefore be undiagnosed or misdiagnosed, but also as a result, are more susceptible to mental health problems. Surely, that will give a bias, based on gender presentation alone?

Indeed is their any data that displays the ages of those who contemplate suicide? and could a complex chemical imbalace of the brain of those with AS; potentially made worse by age, be an issue?

Probably, not appllicable, but just thought i'd ask

Hi Longman

I had exactly the same issues with the numbers pretty much AS I looked at it for the first time. My first instinct was to reject it as a meaningless exercise.

There are competing needs. Professionals need descriptors, a common agreed diagnostic structure and criteria.

Having been thus assessed, all we need is for people to use our chosen self descriptors.

I'm not even sure that there's an issue here.The professionbals (sic, but somehow an appropriate typo so I'll leave it!) suffer disagreement and confusion over diagnosis and nomenclature in a shifting discipline. We need constancy, we don't need to be drawn into this largely meaningless debate.

By the nature of ASD, we believe what we're told. I don't know about you, but I was described in my diagnosis as 'severe Asperger's' so I am an Aspie and, in my mind, always will be. I would find it incredibly difficult to start using a 'new' word so I can hardly criticise anyone else for using the first descriptor THEY heard.

I completely agree with Marjorie. I think that there's an attraction to suicide simply as a way out of the pain of trying to exist as ASD in an abusive world. We cannot possibly know how many suicides are attributable to undiagnosed ASD. I was undiagnosed for years, none of my attempts were successful, obviously, but if one had been, then self-evidently no-one would ever know the real reason.

You have sound reasoning for your pre-occupation.

Thanks, interesting feedback. And you are right to draw people's attention to the link, just i'm a bit pre-occupied with representation, and the apparent disenfranchisement of people with autism.

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.

But if actual numbers are small percentages can be unreliable. 60% of professionals was still more than 100% of people with autism responding (1109 professional responses versus 502 wuith autism). When people with autism only make up 12% of the survey, instead of 25% if the groups had been equal, it doesn't really gauge much about "how people with autism like to be described".

My concern is that this, and many other studies, because of the way the data is collected, few people with autism get a voice.

And with suicide, my original posting, often the people at risk of suicide aren't the ones included in a study.

A lot of research is based on people using one clinic, or only people who paid for a private diagnosis etc etc. These groups may have different demographics from the wider autistic population - that is may not be representative. That's when things get missed.

For anyone who's interested, in the survey you mention the majority of autistic adult participants (61%), family members/friends (52%) and parent's (51%) endorsed the term "autistic". Professionals preferred "on the autism spectrum" (60%). Read the abstract or download the full text or audio versions from m.aut.sagepub.com/.../1362361315588200