increased depression and suicide rates in autistic adults

"The average life expenctancy of people with Asperger's is 54.  The main cause of early death is suicide."

The above is true at least for that group studied at the Karolinska. I would like to see some replication studies in other countries.
https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/premature-mortality-in-autism-spectrum-disorder/4C9260DB64DFC29AF945D32D1C15E8F2

There's the abstract - it's very frightening.

David N. Andrews M. Ed., C. P. S. E.
- psychologist (teaching, learning & development)
- psycho-educational consultant
- autistic adult

The average life expenctancy of people with Asperger's is 54.  The main cause of early death is suicide.

This is all very interesting - I'm AS, aged 52, 10 years since diagnosis - chronically depressed & suffering from a serious auto-immune problem - I may as well book my funeral now.

I was a super-bright kid - got really bored in school. Ended up as a chartered engineer - I've got a whole bunch of letters after my name anda pile of certificates an inch thick. Been married 28 years to a professional councelor - she says she can't 'read me' - I'm a blank wall to her.

Rip Van Wrinkle said:

I think other people are strange because they don’t seem troubled by all the wrongs and pain in the world.... as long as they are on their hamster wheel in their gilded cage following all the others. 

I think if I'm honest, Alice, it's other people, and their actions and behaviours, who contribute the most to my depressions and anxieties.  Throughout my life, other people have invariably been indifferent towards me at best, hostile towards me at worst.  I've trusted people, implicitly, and been let down.  I've been gulled, manipulated and taken advantage of countless times.  Even now, recently, with someone who proclaimed to understand me and respect me, I've been tossed aside like I counted for nothing - over something so trivial it's barely worth mentioning.   I once told my therapist that my life, given a different set of genetic factors, could easily have turned me into a murderous sociopath.  But it hasn't.  It's turned me the other way entirely - into a defender and carer for the vulnerable.  People like myself.

Cassandro said:

The time period between registered ASD diagnosis and suicide was on average 2.86 years (s.d. = 2.41) in the low-functioning ASD group and 2.53 years (s.d. = 2.65) in the high-functioning ASD group.

Interesting.  Might be material for research there. 

I'm 5 years over the average age, and my diagnosis was made 3.31 years ago.  I suppose I'm relatively content to be on the planet.  Just.  I've come so close to death a few times - twice by my own hand, three times as a result of near-miss accidents.  I have this thing in my head that I've survived for a reason.  I wondered if being able to be there for my mother at the end of her life, and then to write about it, was reason enough.  I still think there's something else, though.  I should cling onto that.  I think if I can allow alcohol not to get the better of me, and can get through these final few years of work, maybe I'll have chance to find out what it is.

A 100% increase is a doubling. A 200% increase is a tripling, and so on. That's why I said 800%.  The rest of this post may or may not be of interest.

The actual figures from Hirvikoski et al (2016) which is the source of most of the stories, are odds ratio of 9.40. Allowing for statistical error, a 95% chance of the ratio being between 7.43–11.90. This is based on 76 people with 'High Functioning ASD' killing themselves, 7 'Low-functioning ASD' and 1094 controls (non-autistic).

So to be pedantic with myself, I should probably have said there's statistical confidence that the suicide rate for 'Aspies' (in a narrow sense) is about 643 to 1090% higher than non-autistic people. (However, I'd still be wrong, because what I really want to compare is what's called the relative risk. I could work this out, I expect, it's just not given in the paper. It looks like they're very similar.) Also note absolute risk for autistic men and women is similar, about 0.3%, but since women generally succeed in killing themselves less often than men, this is a bigger increase in risk, about 13x, for Aspie women. Also, I'm not sure if the following suggests there should be much more support while waiting for and after diagnosis:

The time period between registered ASD diagnosis and suicide was on average 2.86 years (s.d. = 2.41) in the low-functioning ASD group and 2.53 years (s.d. = 2.65) in the high-functioning ASD group. [Note deaths were looked at over 22 years]

The 66% suicidal thoughts is from different studies :

Three recent high quality studies have uncovered shockingly high rates of suicidal thoughts, behaviours and completed suicide in autistic adults. Our recent research showed that 66% of autistic adults had contemplated suicide in their lifetime. This was significantly higher than patients with psychosis, a high-risk group in which suicide has been extensively studied.

Of course, it would be nice to know how many Aspies manage to stay relatively content to be on the planet.

Wow Martian Tom! You’ve put into words and communicated exactly how I feel too. Especially the “if only” feeling! I guess being ‘depressed’ (which I find hard to recognise in myself) is my default and thus part of my personality anyway. Not sure yet exactly who I am, but I’ve just accepted feeling despondent etc a lot of the time is part of my personality. I think other people are strange because they don’t seem troubled by all the wrongs and pain in the world.... as long as they are on their hamster wheel in their gilded cage following all the others. 

I think even if I had been diagnosed young I would still have this battle. At least now I am diagnosed I don’t have a battle against misdiagnoses. At least now I know for myself I was right all along! I’m just different. 

Cassandro said:

Autistic adults without a learning disability are nine times more likely to kill themselves (compared to the general population). So that's 800%, not 60% by my reckoning.

At risk of seeming stupid (I've told you I'm not good with maths and stats!)... how do you get from nine times more likely to 800%?

I remember, in my late teens, meeting a colleague at work who'd been privately educated.  I met her younger brother, too (younger than I was), who had just been accepted into Cambridge.  It was my first experience of being around 'educated' people - people who knew languages, grammar, the sciences - and it was like being overwhelmed all at once by the sheer magnitude of my ignorance.  I didn't know how it was possible for young people to know so much.  Even now, I'm staggered when I hear of an 18-year-old with, say, 10 GCSEs and 3 A Levels.  How is it possible for the human brain to take in, assimilate, understand - learn - such an amount of stuff?  So, for me, it was confirmation of what my teachers had said at school.  But then I took a Mensa test... and got into Mensa!  How was this possible?  How could I be 'thick' and at the same time highly-intelligent?

And how can I continue to be highly-intelligent, yet incapable of retaining information well enough to learn anything like a language, mathematics, sciences, etc.  Is it to do with faulty learning methods?  Or is there something actually in my brain that prevents it from working in that way?

I'm fully aware, of course, that intelligence and education are separate issues.  Having many educational qualifications doesn't necessarily make for an intelligent person.  But surely, if a person starts out with a high degree of intelligence - shouldn't education then be easier?

(I've just taken an ADHD test, similar to the AQ test, and interestingly I score 34 - the starting point for indicating the possibility of Adult ADHD.  I think I may talk to my GP about getting a referral.)

That's shocking, Robert.  So sorry.

I was quiet and shy at school, but disruptive at home.  A common enough thing.  According to school, I was pretty hopeless academically.  The head told my parents that I'd probably always struggle.  In my early teens, I was heading for delinquency.  Moving away from London helped that.  But the bullying in Devon was horrendous.  I lived in fear every day.  It was all about trying to work out strategies to avoid the bullies - but they were everywhere.  Even on the bus home, and in the neighbourhood when I got home.

I know I caused my parents a lot of grief, and they didn't know quite what to do for the best.  But they weren't violent towards me in that way.

Yes, sorry - I was getting confused.  It was the percentage of newly-diagnosed people who have considered suicide, according to research.  66%.

Comment duly amended.

Yes... sorry.  That's what I meant.  My mistake!

On the second point, I may have misunderstood something I recently read (trying to find it). I'm sure it said that suicide incidence is 63% higher for high-functioning autistic people than for the rest of the population.  The figure of 'nine times more likely' is something I heard from a researcher at the Autism and Mental Health workshop I mentioned before.  Forgive my understanding of maths and stats!  Not strong points for me - though I'm usually better with details.

Trogluddite said:

1) Is the support which these people are receiving really teaching them what they need to survive independently in the adult world? If all it is really doing is teaching autistic people how to mask better, then I think that the possibility of burn-outs and long term mental health problems may still be very high, if only from the sheer effort of maintaining those coping mechanisms. To an outside observer, I coped well right up until I left home; in reality I was a nervous wreck inside and constantly anxious that I'd be exposed as a fraud. When I left home, my new circumstances meant that I didn't know what mask I should wear, and I fell apart completely; I was closer to homelessness and death than at any other time, and no warning signs that this might happen were ever noticed beforehand.

Good question. The provision of services is very invariable but at least children with ASD are less likely to be diagnosed as having behavioural problems or lazy at school, and ineffective solutions like harsh discipline with no reason or explanation offered that usually make the situation worse.

There have been instances of secondary school age students with undiagnosed ASD back in the 1980s and 90s being sent to residential schools for children who were violent and aggressive at mainstream school, or for children with family problems when their parents could not support them, often under the guise of emotional and behavioural difficulties. LEA officials did not always check up on the progress of such children or whether the school was suitable for them at regular intervals.

Reading your posts, brings back memories of my childhood.

You mention being clearly bright at the age of 7.

When I was 7, I was mute, half deaf, being physically beaten at school every day.  People were complaining to my parents that I was clearly retarded.   

And around that age my mother actually tried to kill me. One day in a fit of despair she repeatedly smashed my head against the kitchen wall, shouting that she didn't know what to do with me!

The average age of people with Asperger's is 54.  The main cause of early death is suicide.  The incidence of suicide is, so I've read, something like 60% higher for autistic people than for the rest of the population.

I just want to pick holes in these stats. I think MT meant the average age of death (ie life expectancy) is 54 (across all autistic diagnoses). That would mean the average age of a random group of autistic people is likely to be around 27. The same large-scale 2016 Swedish study mentioned in that link is now available in full online and reported in the Washington Post among other places.

And the stats from Autistica are worse: Autistic adults with a learning disability are 40 times more likely to die prematurely due to a neurological condition, with epilepsy the leading cause of death. Autistic adults without a learning disability are nine times more likely to kill themselves (compared to the general population). So that's 800%, not 60% by my reckoning.

Good points.  I know that my childhood, after about the age when I started school in 1964, was not a happy time for many reasons.  I was clearly bright, but my progress at school tailed off around age 7 and then started a continuous decline.  I was bullied throughout my school years, including finally being hospitalised with a shattered cheek bone.  I never went back to school after that - just short of my 16th birthday.  The bullying led to my increasing preference for isolation from around age 11.  I never felt comfortable around other people.  On top of this, there were disruptions at home.  My parents always stayed together, but my father always had problems with drink and money.  I remember lying awake at night hearing awful rows.  Many times in my youth, I remember wishing my dad would leave us because of his moods. 

It wasn't until I was in my early 20s that I began to realise how far behind everyone else I was emotionally and educationally.  I'm still there, really - approaching 60.  I've never really properly matured.  There are so many things I've always struggled with - mainly connected with social activity and emotional attachments.  I don't think I really know what love is, and I don't think I ever will.  My closest attachment was with my parents.  It's why I didn't leave home until my mid-30s, and why I never truly left home.  With those people gone, I feel adrift.  Lost.  My diagnosis means I can make sense of my life now, but it doesn't make it any easier to bear.  I go through my day to day life now and manage things pretty well.  I take responsibility for my health (the drinking aside, and I'm trying hard to kick that, but struggling); I eat well, I pay my bills, I do my job well.  My cat almost feels, sometimes, like the strongest reason I have to keep myself alive.  She had a rough life before I got her, and I want her to continue with the good life I can give her.  In all of that, the thought of suicide as an escape route is always there.  Always.  I live on a knife-edge at times.  Something like this recent new job offer, with the associated changes and ramifications, led me to crisis.  It's why I've had to turn it down.  I can't handle things like that just now.  It took me to the edge of despair.  Chronic indecision (or chronic over-analysis) has plagued me throughout life.  I have no confidence around other people - except around my service users at work, when I can slip into their mode and be the entertainer, nurturer... carer I am deep inside.  I struggle with my colleagues.  It's always 'normal' humans who make me feel inadequate by comparison. 

I don't know whether earlier diagnosis and interventions would have made a difference.  I can never know now.  At a workshop I attended the other week (Autism and Mental Health), the attendees were all on the spectrum.  They were all ages, from late teens to 70s.  Most of the older ones, naturally, had been recently diagnosed.  Of the younger ones who were diagnosed earlier, there were still plenty who struggled: with social issues, with emotions, and with stigma.  A few had eating disorders.  A few were self-harmers.  Most had tried all sorts of medications.  Some very capable-seeming people were in supported living.  Our local authority is working on a joint protocol involving social services, autism services, community groups and the NHS to try to develop better awareness, better understanding, and better access to diagnosis and treatments.  Most people there, of all ages, brought up the same main issue: getting through the wall of being taken seriously by GPs and educationalists.  Many had been and were continuing to be channeled off into mental health services first and getting misdiagnosed.

I'm not sure we can generalise with ages on a 'happiness/misery' scale.  I've met some very unhappy younger people.  I've also met some reasonably settled older people.  Of course, for the older ones - such as myself - there is always that thing of 'if only'.  Opportunities missed when signs were there.  The flip side of my coin is that I'm glad I'm autistic, and proud of it.  It kind of takes the edge off the down times for me.  I look at the NT world and see people frantically trying to compete, trying to find 'happiness' in money and possessions, trying to keep up and keep in with the 'in crowd'.  It all looks like madness to me.  Like rats in a maze.  With all of us, I suppose, the important thing is getting that greater understanding and awareness, and destigmatisation.  I wonder when it will come, or if it will.  Even working with supposedly trained (and therefore, one would hope, enlightened) people in autism services, I still encounter large gaps in understanding at best, and ignorance at worst.  I feel I constantly have to explain myself to people.  A young colleague at work said recently that she never wanted to grow old because she didn't want to succumb to diseases like dementia, arthritis, etc.  I explained that growing old is about so much else, and doesn't need to include these things.  I said about the process of self-discovery.  The accrual (hopefully) of a certain wisdom.  I concluded, though, by saying 'Unfortunately, it's a bit like trying to explain what it's like to be autistic to someone who doesn't have autism: you can't really 'get' it unless you're in it.'  That's the biggest thing we have to overcome, I think.  Only a cat knows what life is like as a cat.

I would say that depends on a couple of things...

1) Is the support which these people are receiving really teaching them what they need to survive independently in the adult world? If all it is really doing is teaching autistic people how to mask better, then I think that the possibility of burn-outs and long term mental health problems may still be very high, if only from the sheer effort of maintaining those coping mechanisms. To an outside observer, I coped well right up until I left home; in reality I was a nervous wreck inside and constantly anxious that I'd be exposed as a fraud. When I left home, my new circumstances meant that I didn't know what mask I should wear, and I fell apart completely; I was closer to homelessness and death than at any other time, and no warning signs that this might happen were ever noticed beforehand.

2) Is there going to be any improvement in services for adults and society's attitude to autism in general? From school-leaving age to middle-age is plenty of time to experience the kind of frustrations that we often talk about here; difficulty with finding work, rejection in romantic relationships, feeling left behind by peers, etc. Even where childhood interventions have been very successful, those people's lives could be full of unexpected, nasty surprises, just like anyone's can be. At those times, support services still need to recognise that they are dealing with an autistic person, and that in a time of crisis, their autistic traits are likely to become far more prominent and will need accommodating. These critical times are when a person is at their most vulnerable, so even if the new generation's general ability to cope is much better, we shouldn't be complacent about the need for adult support tailored for autistic people.

There is a question whether this phenomenon of suicide amongst middle aged and older adults will continue in the future or decrease. Does it have anything to do with bad childhoods as a result of undiagnosed ASD whereas the younger generation with ASD are more likely to be diagnosed and offered recognition and support as children and teenagers?

Despite all the stuff about todays youth being a hard done by generation, I find that younger adults with Asperger Syndrome tend to be reasonably happy and confident people whereas many over the age of 40 are miserable and depressed, and often talk about their ruined childhoods as a result of them being misunderstood or accused of being badly behaved. Some who were children in the 1980s and early 90s are upset that Lorna Wing didn't do more to publicise AS because more awareness could have spared them injustices that they received.

For me, it's maybe not a normal thing to say, but it's certainly part of my "normal" to think of suicide often. I can't say that I think of it as irrational, either; when I've had enough of doing something, it seems rational enough to want to stop; whether it's picking my nose or being alive. I've given up trying to get through to people that my lack of fear of death is real and complete; wanting to feel nothing more seems very logically and emotionally preferable to feeling awful; it's the emotional bond that people have with being alive for it's own sake that seems irrational to me.

I think that's the part that I've struggled with the most; that I'm encouraged to talk about these things, but other people's (including mental health workers') conception of them is so different to mine - they never understand that I have never been without depression or suicidal thoughts almost every day since, at the latest, my early teens. This is my "normal", so I don't exhibit the expected melodrama; I get accused of being flippant because my talk about them is so matter of fact, or I'm accused of simply lying that I even have them. How could anyone have those thoughts without being in a blind existential panic? I don't know, but they're still there.

I takes extreme effort even to look for help with them - no-one else goes to a doctor just to tell them that everything is exactly as it normally is, so why would I? When I'm asked what particular event or mood has made me feel suicidal, I can never answer. For sure, alexithymia has its part to play in that, but more profoundly, I don't see why there should be an answer - there needs to be no specific trauma or emotion; it just is, and always has been, there. I've yet to see a therapist that could get anywhere with this aspect of my life because I don't have the discrete traumas or visceral reactions that they seem to need to hang their interventions on.

The ultimate reaction of professionals seems to be; well, I've had these thoughts most days for several decades, and I'm still here, so just carry on carrying on. I never mention it to people in my personal life because I can't bear their melodramatic responses, or accusations that I'm just looking for attention

Curiosity is what keeps me going; it drives the special interests that distract me, and the morbid fascination that keeps me alive sometimes; How much longer can the world carry on being so awful? Can it get any worse? Might some others accept that I was right all along? I have been saved from suicide by procrastinating about those things many times; so maybe my executive function impairments have a "positive" side all along!