Because YouTube thinks I’m stealing my OWN CONTENT, I have to note that you’ll find that my YouTube channel, https://www.youtube.com/stephaniebethany, also contains the above video and content because I CREATED IT. Thanks~
When I went to look into the average life expectancy of an autistic person, I ran into an article by the UK's NHS, which looks into a Swedish peer-reviewed, case-control study done with a large sample size, using the records of over 20,000 people diagnosed with ASD in Sweden between 1987 and 2009. The study found that the average death of an autistic person was age 54, while their matched controls had an average death age of 70 (Bazian 2016). That means, on average, autistic people are dying 16 years earlier than the general population. An analysis done in the US in 2018 found a similar pattern, finding decedents with ASD to have died about 20 years earlier than control decedents (Smith et al. 2019).
Obviously, with the autism spectrum there are many variables, and this Swedish study did its best to work with those. They split people with ASD in two groups - those with learning difficulties and those with average or above average intelligence. All included on the spectrum - meaning regardless of intelligence scores - were found to be 2.5 times more likely to have died during the study than people without. The study found the highest risk group to be autistic people with comorbid learning difficulties - especially women, who had nearly 9 times the mortality risk of women their same age without ASD. Additionally, people with average to above average intellect scores had 9 times the increased suicide risk (Bazian 2016).
As many may have suspected, those with co-morbid learning difficulties, marked in the study as "low functioning," were found to have, on average, died before making it to 40. They also had a five-fold risk of having died during the study, while the so-called "high functioning" group had a two-fold risk. Out of everyone, the highest risk group was women marked as low-functioning, with an 8-fold risk higher risk of death than non-autistic women their same age (Bazian 2016).
Causes for Death
To be more specific, the study looked into the chances of people of ASD having died from different categories, which were “infections, cancers, hormonal disorders, mental and behavioral disorders, diseases of the nervous system, circulatory system, respiratory system, or genitourinary system, birth defects, and external causes, with self-harm or suicide recorded separately” (Bazian 2016, para 22).
Except for infections, autistic people were more likely to have died from any of the causes of death considered, especially suicide and epilepsy (Bazian 2016). A 2018 US analysis found that decedents with ASD had higher rates of most health conditions (Smith et al. 2019). The Swedish study found that autistic people were 7.55 times more likely to die by suicide, with "higher functioning" individuals at a greater risk than "lower functioning," with women usually more at risk than men. This is in contrast to the general population, where usually suicide rates are 3.5 times higher in men than women (Bazian 2016). A 2019 study in Utah found risk of suicide death in autistic people to have increased over time and be greater than in those without ASD between 2013 and 2017 (Kirby et al. 2019).
I find this particularly interesting, since the time frame indicated should have been a time of increased autism awareness and acceptance. This could imply that increased awareness and acceptance has been slow to have a positive effect, have no effect, or even a negative effect. However, I find it more likely that this is due to the 2013 release of the DSM-V, which put many separate diagnoses under the umbrella of a singular diagnosis: autism spectrum disorder, including Asperger’s. Many practitioners previously tended to diagnose Asperger’s over autism to those with average to above average intellect, which is the group with a higher risk of suicide.
Additionally, the Utah study found females to be more than three times more likely to die from suicide than their non-autistic female counterparts, young people with ASD were at over twice the risk for suicide than their non-autistic peers, and that autistic individuals in general were less likely than others to die from firearm-related suicides (Kirby et al. 2019).
Other studies concur with the significantly higher rates of suicidal thoughts and behaviors in the autistic population, even in one study that also accounted for relevant demographic characteristics and co-occurring psychiatric diagnoses (Smith et al. 2019).
As for dying as a result of nervous system disorders, primarily epilepsy, autistic people were found to be 7.49 times more likely than non-autistic people, and those considered low-functioning were most at risk in this category (Bazian 2016). A 2013 Utah study also found elevated mortality risk in those with ASD with intellectual disability and medical comorbidities related to death, but also compared autistic people to their family controls, which suggested some of the risk observed could be explained by familial factors. Among other studies, the most consistent finding for explaining elevated risk in those with ASD is that specific co-occurring conditions, particularly seizures, may be associated (Smith et al. 2019).
According to the researchers, this study highlighted the possibility of autistic people being more vulnerable to getting certain diseases that can lead to death and issues with doctors possibly not being as good at diagnosing and treating diseases in autistic people. As they said, "Adequate and coordinated medical care for individuals with ASD and research into the phenomenon should be a target for a considerably broader audience of medical specialties than psychiatry and neurology” (Bazian 2016, para 33). A 2018 study also found a significant relationship between social communication impairments and suicidal intent among over 5,000 youth in the UK, and a 2017 study found that self-reported autistic traits predicted suicidal behavior in mediation models, with significant indirect effects found through both perceived burdensomeness and thwarted belonging (Kirby et al 2019). Simply having autistic traits increases the likelihood of someone perceiving themselves as burdensome or as not belonging, which are significant contributing factors to someone becoming suicidal.
My Thoughts
On a personal note, I'd like to argue that autistic people may need more help in even recognizing that they are suffering from depression or dealing with suicidal thoughts in amounts that aren't "normal." A part of how I experience alexithymia, which is commonly co-morbid to autism, is not really understanding what or how or in what degree I feel emotions, and I didn't know how serious my depression was until going through an honest intake with a psychologist. It may be that some, like me, become so suddenly overwhelmed and feel isolated and unable to reach out when it seemed like prior nothing was wrong. This requires professionals and others to actually care. This also requires autistic people to know that they are important and valuable and that it's not normal to think about leaving this world all the time.
I would like to echo the cautionary message on the NHS site in that 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. The study does not dictate that my life will end at a certain age or how it will end. This is important information, but please do not take it as a reason to fear or believe your life has been determined for you. Another note is that information here may be slightly skewed since the way ASD was recorded in Sweden before 2001, it might represent more people who are considered to have "severe" autism than in the average population. Since we now know more than major stereotypes regarding autism, it's possible that this is slightly more representative of those who fall into that. However, that by no means dismisses the importance of the study. These are all things to simply consider.
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. Parents, families, and caregivers watching out for signs from those who need more support and may not be able to fully communicate their emotional and mental health status would also help. 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!
Regardless of perceived functioning, our mental health matters, our physical health matters - we as humans, matter. Please listen to us, however we communicate.
It is abundantly clear to me, from these studies, that there is a lot more work to be done in many sectors. It is in part this fallacious idea that autistic people can only be handled or seen by magical experts that excludes them from accessible care. We are just as much a person as your last patient, visitor, guest, customer, or whatever else. If you don't know how to handle autistic people, perhaps the best option is to learn instead of continually leave us out here to fend for ourselves, unheard.
References
Bazian. (2016 March 21). People with autism are 'dying younger,' warns study. NHS. https://web.archive.org/web/20201101141044/https://www.nhs.uk/news/neurology/people-with-autism-are-dying-younger-warns-study/
Kirby, A.V., Bakian, A.V., Zhang, Y., Bilder, D.A., Keeshin, B.R. and Coon, H. (2019), A 20‐year study of suicide death in a statewide autism population. Autism Research, 12: 658-666.https://doi.org/10.1002/aur.2076
Smith DaWalt, L., Hong, J., Greenberg, J. S., & Mailick, M. R. (2019). Mortality in individuals with autism spectrum disorder: Predictors over a 20-year period.Autism : the international journal of research and practice,23(7), 1732–1739. https://doi.org/10.1177/1362361319827412
