increased depression and suicide rates in autistic adults

Depression is even more likely to affect those in the autism community than it affects neurotypicals and the non-disabled, because of the lifelong torture that people with autism go through on a daily basis. And people on the autism spectrum also have a high suicide risk, according to medical research and proven psychology articles. Which is why as someone with Asperger syndrome I find myself wondering if I will continue to suffer from depression and have thoughts of suicide for the rest of my life.

There was this group of ASD and Asperger Syndrome adults who had either contemplated suicide or considered doing so after being diagnosed at a clinic, because they ended up suffering from depression. I also heard about one autistic man who eventually committed suicide. I don't want to end up amongst those people - even though I won't be able to break free from my severe depression.

Parents
  • 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.

  • 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.

Reply
  • 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.

Children
  • 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.

  • 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. 

  • 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.

  • 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!