I was quite shocked this week when I read that the average life expectancy of autistic individuals is 54 years, especially since I’ll be turning 54 this year! Surely that can’t be right – I needed to delve deeper.
Sadly, that is the reality of being autistic. Our average life expectancy is much lower than the general population, but at least the reasons for this are in our control, no research has ever found autism to be the cause of the lower life expectancy.
The study in question is called “Premature mortality in autism spectrum disorder”, published in the British Journal of Psychiatry in 2018 and was based on a group of 27 000 autistic individuals in Sweden over the past 30 years.
The researchers found that:
- Increased mortality in ASD was not limited to certain causes of death but was elevated for all categories, apart from infectious diseases.
- Mortality was increased in both low-functioning and high-functioning ASD, as well as in both genders.
- The risk was particularly high for females with low-functioning ASD.
Why do we have a lower life expectancy?
This is a question asked by Dr Amy Marschall in Very Well Mind, Stephany Bethel in her blog and Jeremy Brown in Autism Parenting Magazine.
1. Co-morbidities
The major contributor to life expectancy differences for autistic versus non-autistic people is comorbid genetic and medical conditions. Compared to non-autistic people, autistics are at higher risk for several genetic or neurological disorders that are linked to shorter life expectancy, including Down syndrome, muscular dystrophy, and epilepsy.
The 2018 study, “A Scoping Review of Health Disparities in Autism Spectrum Disorder“ found that people with autism are at an increased risk of neurological and gastrointestinal disorders. Any of these, if left untreated, can lead to premature death. On their own, they certainly lead to an elevated mortality risk for autistic individuals.
2. Accidents
Yes! Accidents remain a major reason for the lower autism life expectancy. According to the National Autism Association, 48% of children with autism have wandered off from their families. These can increase accidents, especially if a child is fond of water. Drowning is one of the leading causes of premature death for autistic people.
A study published by the American Journal of Public Health (AJPH) in 2017 found that autistic people are three times more likely to die because of injuries than the general population. While there are many reasons behind these tragic accidents, some are caused by sensory issues.
Sensory sensitivities in people with autism can make them more prone to sensory overload, which may increase the risk of accidents and injuries, while communication challenges associated with autism can make it difficult for individuals to express pain, discomfort, or injuries. This can lead to delayed medical attention and treatment for injuries.
3. Mental Health
Autistic people are also at higher risk for mental health issues compared to those who are not autistic. This includes anxiety, depression, psychotic disorders, and trauma disorders. And unfortunately, a higher risk of mental health issues also means a higher risk of suicide. A 2023 study at the University of Iowa found that risk increased further if the autistic person had what is considered to be a higher IQ. The risk of suicide increased six times for those on the spectrum with an IQ of 120 or higher compared to those with a lower IQ.
Overall research shows that autistic people are six times more likely to attempt suicide than the general population and up to seven times more likely to die by suicide. While many factors may cause suicidal thoughts, some of the most common reasons are negative childhood experiences, loneliness, communication difficulties, and lack of support.
4. The role of social reciprocity
The study, “Mortality in Individuals with Autism Spectrum Disorder: Predictors over a 20-Year Period“ in 2020 also noted the extent to which impairments in social reciprocity, such as social smiling, responsivity to the approaches of others and interest in people are predictive of mortality that occurs decades later in adulthood. They acknowledge that confirmation of this finding in future research is needed, but the magnitude of the effect in their sample is notable. They also recommend that further research that “elucidates the mechanism by which impairments in social reciprocity may directly or indirectly affect survival in adulthood is needed to understand this finding fully”, but the findings point to the importance of lifelong social engagement.
Cautionary Message:
I would like to echo the cautionary message that most of the authors reiterate: Just because something is an average statistical outcome or higher risk doesn't mean that you or your loved one will certainly experience the things mentioned here. These studies do not dictate what will happen to my life or yours. Please do not take it as a reason to fear or believe your life has been determined for you.
What can we do?
While autism spectrum disorder doesn’t automatically reduce life expectancy, autistic people die at a younger age at a higher rate than neurotypical people. But what can be done to improve life expectancy? Researchers say that starts with the family.
Autistic people may need more help than others in recognizing that they are suffering from depression or dealing with suicidal thoughts in amounts that aren't "normal." Getting help when you're seeing signs of poor mental health in yourself is a way to keep yourself from being one of these statistics.
Family members must also step up to address mental health issues. While mental health can certainly affect someone’s self-esteem, anyone who recognizes anxiety or depression can step up to address the situation. You may never know if you are addressing someone at a greater risk of suicide, but addressing mental health in our social relationships can go a long way. This also extends to physical health. Autistic people are often considered to be hypochondriacs - the thing is, we actually tend to have a lot more health problems than the average person!
Family can also be more attentive to prevent accidents. It can be difficult if the child is an elopement risk or gets into every cabinet in the house, but taking precautions and being more attentive can reduce the risk of wandering, drowning, and accidentally ingesting a lethal dose of medication.
Create a community
If you have a family member who is on the spectrum, it is critical that you let them know by all that you do and say how much you love and value them. Autistic individuals might not always feel the easy sense of human connection that is present for many of us with no great effort on our parts.
It is also helpful to create a network of close, reliable friends. If they belong to clubs, or they are in a relationship, it is probably going to do them a lot of good. If they have a job or a career that they feel is rewarding, that can help as well. It is when people with autism feel disconnected from society that they might resort to suicidal thoughts or ideations.
Ideally, it must be a community effort, and hopefully, together you can show the person in question that you care about them and don’t want them to come to any harm. You must try to strike a balance between helpful and respectful. That’s the best way to show those with autism that you want to be part of their support network, but you are not trying to exert direct control over their lives.
What am I doing about this?
We know that our beautiful Malaika Rose will never have a “normal” life. Her brother will, but she will never have a job and a house and everything else that goes with a neurotypical life. I started this business so that she will be looked after financially, but that is not enough. We’ve already had the suicide discussion with her and have to manage her physical and mental health every day. On top of that, she thrives on social reciprocity and wants to be part of a group of friends.
She will need more that just a caregiver to keep her safe. She will need a community. A community where she can feel useful and needed. Not a “care home” or residential facility, but a community of like-minded people that function within the boundaries of their autism and outside the boundaries of a neurotypical society.
When our kids were diagnosed, the psychologists told us that “they were not designed for this world.” I want to know what the world that they WERE designed for looks like – and if it doesn’t exist, I’m going to create it. That is why I’m doing all of this.
This journey has already started, but we can't do this on our own. If you want more information or want to help to create the dream of an autistic community, send an e-mail to info@autismvillage.co.za to join the conversation.