Living to 39

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I turn 35 next september,

Because I have autism can I only expect to live to 39 years old?

I'm autistic and I'm 49 years old. I've lived past 39.

...But, I'm right-handed! I wonder how much being left-handed would've shortened my lifespan. Power tools and dangerous equipment are designed for right-handed people so I can see where accidents could be a problem for lefties.

But, is there a cure for left-handedness? Would lefties want the cure?

Clearly you're not doing autism right then. /JK

Anyways, I do wish they'd be some numbers excluding suicides and some of the most egregious self harm as I suspect that it would be like the wealth gap between various racial groups or men and women that magically disappears of you throw out the top quartile.

I turn 35 next september,

Because I have autism can I only expect to live to 39 years old?

I turned 39 in 1997.

I am 63.

I am not aware of any statistics that state that people with ASD have an average lifespan of 39. Could you provide a citation as to where you found this information?

One study, published in the American Journal of Public Health in April 2017, finds the life expectancy in the United States of those with ASD to be 36 years old as compared to 72 years old for the general population. They note that those with ASD are 40 times more likely to die from various injuries. About 28 percent of those with ASD die of an injury. Most of these are suffocation, asphyxiation, and drowning. The risk of drowning peaks at about 5 to 7 years old.

The other study was published by the British Journal of Psychiatry in January 2018. This was a Swedish study showing similar results but elaborating on other causes of death as well. This study showed a life expectancy in those with ASD with a cognitive disability (or a learning disability) at 39.5 years versus 70 years for the general population studied. Those with ASD without a learning disability had an average age of death at about 58 years. The leading causes of death in those with ASD in this large study were heart disease, suicide, and epilepsy. The suicide rate among those with ASD was 9 times higher than the general population. There have only recently been studies showing the increased risk of suicide in those with autism spectrum disorder. Future studies will help us to understand what causes this increased suicide risk so that we can help to fight it. It should also be noted that 20-40 percent of those with ASD have seizures compared to 1 percent of the general population, causing this increased risk of death by seizures.

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.

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.

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.