Not OK – early mortality and autism

Content warning – general references to suicide

I read a research report the other day which showed the average life expectancy for autistic people as being as low as 39 years old*. Apparently the second most common cause of death for autistic people is suicide. Suicide rates are around nine times greater for autistic people than the general population. This horrified me on quite a few levels. I even made a meme about this which I decided not to post as my morning meme as I felt people might be triggered seeing that at breakfast. I have used it as the image for this post though as I feel it really needs to be said.

I turn 45 this year, That means I have had six years of borrowed time already according to the average. And when I reflect, I am only here due to luck. I should also by logic have fallen within that statistic on many occasions and at much younger ages. It has me very worried thinking about this for our community and all those wonderful autistic people in the world. What on earth do we do about this? And that is mostly not a rhetorical author blog post question which I will somehow respond to with clever prose. I actually don’t know what to do about it. I do have some thoughts on some of the issues and some thinking about what might help to address those though.

Autistic people experience mental illnesses at a greater rate than others. We also experience a lot of misdiagnosis in the area of mental health. I cannot count the number of autistic people I have met who have been wrongly diagnosed with borderline personality disorder. When we access mental health services – although maybe that should be ‘when we are subjected to mental health services’ as often they do more harm than good. Anyway, when we find ourselves in mental health care we are often ignored and dismissed. We may feel trapped and powerless because well, we are mostly. Even when we gain an autism diagnosis it can be ignored by mental health and other professionals, compounding that invalidation.

Another thing is the level of ableism in society. I talk about autistic pride but I am one of a relatively few voices in a  world loudly exclaiming that autistics should not be proud. We are called burdens and tragedies and other negative things, and we are paternalised and infantilised. School is so often a hell of bullying and it can be hard for us to form friendships and relationships. We are often isolated and disempowered at the same time. These days we may link in with our autistic peers and neurodivergent peers online but then again we might not. And for people who cannot access the internet that social world is denied.

We struggle to find meaningful work, even if we really want it and have skills and aptitude that in an allistic candidate would result in a stellar career. Or we are unable to work due to high anxiety and negative past experiences in the workplace traumatising us. There are autistic people with PhDs who cannot get a job in their area of study. Not working can mean isolation and no money and also a sense of failure – even if it is beyond our control. Being long-term unemployed when you don’t want to is another risk factor.

We are so frequently Queer – trans and gender diverse,  gay, lesbian, pansexual, asexual and lots of other ‘rainbow alphabet’ letters. Being Queer is seen by bigots as a reason for hatred and we experience that hatred at high levels. It is also compounded with the hatred and discrimination we experience as autistics in a  similar way to other intersectionalities. 

We don’t always have control over our lives. We are seen as incompetent and dependent. People who do not use verbal speech are often singled out for this but it happens to others too. We are frequently  deemed incapable of living independently but also not given the skills to do so. A lack of agency in your own life often leads to powerlessness and despair. We are so often creative thinkers and innovators who don’t get the chance to even manage our daily lives.

We often have physical illnesses and conditions which make life hard. And more to the point, our physical illnesses and health conditions can be invalidated and dismissed by health professionals for a number of reasons. How hard is it to access medical help when you have a different way of feeling pain? When you have a (misdiagnosed) mental health condition and doctors think you must be ‘making it up’? The toll which this takes on a person already managing a health condition is significant. 

These are all risk factors for mortality as I see it. This post thus far paints a bleak picture of disadvantage but I am not going to give up with this. So what do we do? How do we counter these issues? I think that what advocates and genuine allies are doling is a great start. If you look at these issues I have listed most of them are caused by a lack of understanding, respect and sympathy for autistic people and our experience. I think if these things change there should be a reversal in some of these issues around early death. And there needs to be something done and done soon as this statistic is not at all OK on any level. 

I do not consider myself old but by these statistics I an an elder statesman of the autistic community. I don’t want that. I don’t want to see my friends and peers succumb to an early death. They really, really don’t deserve it. For me I want to live to see where my work and my autistic colleagues’ work goes and to see the world change for the better for us. I know that advocacy alone is not going to fix this issue and I’m hoping there are some policy-makers looking at these figures and planning some positive intervention but I do think that people respecting and valuing autistic people and not subjecting us to some of the horrors mentioned here has to be a good thing and good start to turning this around. The world needs to know this statistic is not OK and what people can do to help address it.

*Reference: https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/premature-mortality-in-autism-spectrum-disorder/4C9260DB64DFC29AF945D32D1C15E8F2

Studies show the life expectancy for autistcis peopel as being under 40. This is seriously not OK.

8 thoughts on “Not OK – early mortality and autism

  1. I am amazed I have made it to almost 46, Yenn. I feel I really have no right to still be here. It isn’t a pity thing. I genuinely wonder why me…

    I have attempted suicide at least 6 times with serious intent. Obviously I got found by others at that time and have survived. Being a gutless wonder, I hope and pray cancer might infiltrate my body, so to relieve me of it all.

    The biggest issue is ableism. Hands down the most debilitating part of being autistic for me. I cumbled when Ibread Silberman’s book just after I was diagnosed. It confirmed my suicidal feelings of not feeling good enough to be alive. Even Nazis wanted us gone.

    Added to that, my haemophilia gene has cemented it for me. Faulty genes on so many levels.

    So, why me? I have no autistic super talent; it must be mere luck. And that ISN’T fair.

    I live for the day you no longer have to write these posts, Yenn. That is all that keeps me going. To see the world accept us as ok.

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  2. I am in my mid-40s now, too. I have to face a challenge in my life, now, and that is that my neurologist of seven and a half years will no longer be providing infusion therapy for my CIDP, as she will be focussing upon migraines and sweat, so I have to find a new neurologist. One neurologist who refers people to the infusion centre is an autistic person’s nightmare. She has the bedside manner of a Nazi and is rude, arrogant, dismissive and obnoxious and I could not handle seeing her, again. I am going to ask my neurologist to refer me to another female neurologist with a similar bedside manner and understanding of autistic patients. I just hope it can be smooth. I have said to my parents that a male would not be suitable as it would be triggering and I doubt I could find one who could be verified by Professor Tony Attwood as autism friendly.

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