Death has been on my mind for most of my life. The uncertainty and relative unpredictability of it has made it an attractive topic for a hyper-focused deep-dive; seeking answers, clarity and a desire to find a crumb of certainty.
Some of those thoughts have led to dark places and some have been refreshingly liberating. It does not surprise me that autistic people are nine times as likely as our non-autistic peers to die by suicide. We are more likely to experience traumatic life events including bullying and adverse childhood experiences. We are less likely to be in work – and it is well known that unemployment increases risk of suicide. Autistic people have higher rates of mental illness. We experience multiple social factors that relate to increased suicidality such as needing to rely on food banks or being isolated and/or lonely.
Suicide is an issue of inequality. Death due to suicide is not evenly distributed across genders, social class, geographical area, and ages. The Samaritans have plenty of data about this – and are a source of support if reading this blog is distressing, or for any occasion where you need to reach out…and do please reach out. There IS support, and suicidal feelings and thoughts can and should be spoken about. It IS possible to get through that moment when you’re desperate or on edge. Talking or texting or emailing can help make sense of feelings and thoughts that seem indescribable, and there is ongoing support out there. You don’t have to be suicidal to seek help.
Suicide is not the only reason why autistic people die younger than our non-autistic peers. Some of the social issues we face like unemployment, poverty and isolation impact our health. Many of us have lived with toxic stress.
A certain amount of stress is essential, but toxic stress in infancy and childhood can lead to increased vulnerability to a range of mental and physical health conditions and health-harming behaviours over the life-course, including depression, anxiety, cardiovascular disease,
diabetes, stroke, alcoholism and drug abuse.
Autistic children are not only more likely to experience ACEs (adverse childhood experiences), their sensory experiences are likely to be different to those of their non-autistic peers and may result in Sensory Trauma.
This combination of factors can lead to us experiencing poorer mental and physical health outcomes, and in itself may be significant in why we have a lower life expectancy than our non-autistic peers. Add to that the difficulties we may have in noticing, recognising and communicating what is happening in our bodies due to our interoceptive processing differences and increased risk of trauma, it does not surprise me that our physical and mental health outcomes are poor.
So what happens if we are able to pick up on what is happening inside our bodies and wish to communicate that to the relevant professionals? It is well recognised that autistic people face numerous barriers when accessing health services.
Research shows that autistic people have high levels of co-occurring mental health conditions, yet a number of case reports have revealed that autistic people get the wrong mental health diagnosis and are less likely to agree with a mental health diagnosis because they didn’t feel their healthcare professional understood their condition or how to communicate with them properly.
An event causing Sensory Trauma to an autistic person may be perceived as inconsequential by non-autistic people in the same environment – if perceived by them at all. The autistic person’s reaction may be viewed as “challenging behaviour”, overemotional, or maybe not even accepted or believed – simply because the event may not be recognised as traumatic to other people. The invalidation and mislabelling that accompanies this may – as in my case – lead to an autistic person doubting their genuine experiences and eventually mistrusting their own judgement and expertise on their health and life. They may avoid seeking help or speaking out about their physical and mental health experiences, or they may not receive the medical treatment they require – or even receive unnecessary and harmful treatments and interventions for conditions they do not have.
A study in Ireland reported 80% of autistic people had difficulty visiting the GP. Whilst people with a learning disability can access yearly GP health checks and liaison nurses in hospitals, the same is not true for autistic people, with large areas of the UK having neither.
Autistic people have significantly lower life expectancies than the rest of the population. A statement from the UK government in 2021 quotes the data reported by the British Journal of Psychiatry that autistic people will live 16 years fewer than their non-autistic peers. Another report compares the range of average life expectancy for autistic people from 39.5 years to 58 years, to the global average of 72 years.
Whilst there are numerous examples of autism’s co-existing physical and mental health conditions, I do not believe research should be focused on identifying whether there is a biological or genetic component to this or not. Too frequently I hear anxiety or some other condition described as “part” of autism and therefore to be expected and accepted. It is time these ideas were challenged. Autistic people, whether they also have a learning disability or epilepsy or gastrointestinal disorder or are like much of the human race – simply average or thereabouts – deserve to have a good quality of life.
We know that epilepsy often co-occurs with autism. We know that people who experience epileptic seizures have a reduced life expectancy. But whether epilepsy and autism share a genetic component that make them more likely to occur together is largely irrelevant to an autistic person’s life (unless you were considering terminating the person before birth, in which case it becomes very relevant). What is relevant is that the person can access the services they need and receive the support they require to understand, self-manage and accommodate their epilepsy. And that will come about by designing services and treatment that meet the needs of a wider range of people. It will come about by welcoming different ways of communicating and believing sensory experiences that are different to those of your own. It will come from adjustments to how society does things, so that more people can take part.
I am waiting to find out why my life expectancy is reduced. It seems ironic that after years of battling suicidal thoughts, I am now being handed death on a plate. I am certain that the mislabelling of my own mental health and the consequent medication has played a major part in my incurable physical health condition. But I cannot escape the trauma (both sensory and event based) I have experienced – the body most certainly does keep the score. The effects of toxic stress on my developing body and mind must have played a part too. The invalidation and gaslighting and self-doubt kept me unwell and unable to seek support. My muted interoception meant I did not always know I was in pain or what it was I was feeling – and my heightened tactile sense system meant I responded completely proportionally to excruciatingly painful light touch, but to others who experienced things differently I was interpreted as over-reacting – both these experiences adding to the inaccessibility of support. Even the design of hospitals and surgeries, and the sensory overload that comes with all that white brightness, and noise makes them inaccessible. When I do step inside, my overwhelm can reduce my ability to tap into the flexible thinking, reasoning and organising I require to navigate the communication requirements of finding the right place, at the right time and telling the right person, the right stuff about me!
This is a sad blog to be writing. Sad for me, yes. Sad for the autistic community. If we were any other marginalised group in society, would our reduced life expectancy be kept so quiet? What if gay people were thought to have had a long life if they made it to 55? Surely society would be doing something these days, even though they may not have in the past. How about if it wasn’t a marginalised group? What if it was white men, like the ones who dominate the research and the institutions involved in researching autism? I am certain there would be uproar and demands to change things. Reaching 60 years old should not be almost unheard of for any group of people, anywhere in the world in this day and age.
This is a complex topic with lots going on. It needs further research that listens to and values the input of autistic people from all walks of life. But I do not think we will find answers by looking inside the bodies and minds of those autistic people to find out what is supposedly “wrong” with them, so we can make them “better”. We need to look more widely and be disgusted and offended and outraged that any group of people is expected to have utterly appalling mental and physical health outcomes that reduce their lives to a fraction of what they should have been.
If you like the photo of the Oak tree please read this blog about aging and usefulness.