I am living on borrowed time. What do I mean by that?
I wrote an blog back in 2018 titled, To Those Who Still Don’t Understand, and it focused on how people with autism died an average of 16 years earlier than those who do not have autism. The Swedish study that determined this discovered the average life expectancy for the general population was about 70 years old compared to the ASD group, which was about 54 years old. They also found that people with ASD who also had cognitive disabilities had an average life expectancy just under 40 years old. This study was completed in 2015.
The researchers of the 2015 study reported suicide as being one of the leading causes of early death among people with ASD. They concluded that suicide rates of people with ASD who had no cognitive disability were nine times higher than the general population with suicide rate being higher among girls with ASD. Previous studies have shown that 30 percent to 50 percent of people with ASD have considered suicide. I am included in this statistic and so is my daughter. My son has struggled with self-harming with non-suicidal thoughts and not feeling hope for the future.
In the eight years since the Swedish study, things haven’t gotten any better. In 2021, Kõlves et al determined that the rate of suicide attempts increased with the age at first diagnosis, with the highest age-based suicide rate in autism for individuals aged 30 to 39 years. Amy Marschall, PsyD, stated in 2022, that the average global life expectancy is approximately 72 years old. For autistic people, however, the average life expectancy ranges from 39.5 years to 58 years. There is a serious problem happening in the autistic community.
Suicide isn’t the only thing having an impact on autistic life expectancy. Every year, March 1st is known as the Disability Community Day of Mourning. On this day, the disability community gathers across the nation to remember disabled victims of filicide, meaning disabled people who have been murdered by their family members or caregivers. According to the Autistic Self Advocacy Network (ASAN), in the past five years, over 550 people with disabilities have been murdered by their parents. Active cataloging of cases started in mid-2014 and The Disability Day of Mourning website contains cases from 1980 to the present.
Autistic people often have co-existing conditions that can also shorten life expectancy. Compared to non-autistic people, autistics are at higher risk for several genetic disorders, including Down syndrome, muscular dystrophy, and Fragile X syndrome and are more likely to experience neurological disorders such as epilepsy and hydrocephalus, sleep disorders, and gastrointestinal disorders. Autistic people are also at higher risk for mental health issues, including anxiety, depression, psychotic disorders, and trauma disorders.
Bullying, conforming to societal expectations, masking, constant burnout, not being employed and under-employment, isolation, low socioeconomic status, and “treatments” that are often recommended for autistic people that put an emphasis on compliance and covering up autistic behaviors can have a huge emotional cost that can lead to physical ailments, including heart disease, brain inflammation, strokes, and diabetes.
I have multiple anxiety disorders including Complex-PTSD. I also have Ehlers-Danlos Syndrome (EDS) and have been in chronic pain since I was 14 years old. I have the Hypermobile EDS type. My body has been slowly degrading and there is no cure. Studies have indicated that there is a relationship between Autism and EDS, even going as far as proposing that hereditary connective tissue disorders represent a subtype of autism whose prevalence is currently unknown.
My gastrointestinal problem is connected to my EDS. I had complications with both my pregnancies, with my son’s pregnancy being the worst. I have written about it before – The Volcano is Awake.
I was told about ten years ago that my digestive system was shutting down and I faced the real possibility that my entire large intestine would need to be removed. Fortunately, my doctor at the time learned of a new medication that was different from all the others that she had had me on that had failed. This medication triggered the body to make an enzyme that would essentially make my digestive system into a slippery slide. The medication jump started my digestive system, and I eventually was able to get off it, but I had to remain on large dosages of antiacids due to having severe acid reflux. The years go by, and I am once again having problems with my digestive system, but this time it is higher.
The antiacid is no longer working and my stomach lining and small intestine lining are being eaten away, which means I am moving into possible ulcer territory. This is also aggravating my diaphragm resulting in significant muscle spams radiating into my chest resulting in severe pain and trouble breathing. I ended up in the emergency room (ER) this week due to what has been happening. The idea of going to an ER triggered a panic attack. It has been three days since I went to the ER and I still want to hide. I have been unable to settle my nervous system.
I am so tired of all of this. I am tired of the constant pain, not being able to sleep well, or even eat much. I feel I am living on borrowed time, and I don’t know how much time I have left. Some would say, “Do any of us know how much time we have left?” I understand what they are saying, but I am experiencing the loss of function of my body along with the loss of functioning in general due to constant burnout.
I have been writing about burnout since 2012. My burnout is ongoing and fluctuates depending on my level of prolonged stress and prolonged pain level. In 2015, I wrote Social Skills and Depression. At the time, I was working on my first MEd in Autism Education and this article developed from a discussion prompt I was assigned to in one of my classes – “Research suggests that depression begins in the onset of early adolescence for kids with ASD and is prompted by the stressors of increasing social demands.”
In this blog I wrote, “Depression is something that is common among autistic individuals, my family is no different. What we have to keep in mind is that not all depression has the same cause and not all depression is expressed in the same manner, especially in people with Autism.”
I also included this quote, “There are diagnostic difficulties when considering depression in autism and Asperger syndrome, as the characteristics of these disorders, such as social withdrawal and appetite and sleep disturbance, are also core symptoms of depression. Impaired verbal and non-verbal communication can mask the symptoms of depression. Symptoms associated with autism and Asperger syndrome such as obsessionality and self-injury may be increased during an episode of depression.” (Stewart et. al., 2014)
Am I experiencing depression? Maybe, but it is never one thing. Is this grief mixed with anxiety? I don’t know. I just want to cover my head, fall to the ground in a ball, rock and hit my head with my fists. This sounds more like being overwhelmed and being in fight/flight/freeze/fawn response. I feel like I need to cry, but once again the crying feels stuck. I need to run and keep running, again with the flight response. Run, hide, flee, get away, leave me alone!!
I hate feeling this way. I feel like I am vibrating inside, irritable, detached from myself, yet feeling incredibly fatigued, not able to handle sensory input well, and in a lot of physical pain. It is a workday tomorrow and I already feel the drain of the mask that I will be putting on to make it through the day.
I don’t have an answer on how to address my ongoing burnout. I am a parent, I have responsibilities. I only have so much sick time and my vacation time is being used later this summer. I understand that I need an extended amount of time to allow my body to shut down to recover, but I can’t afford that luxury.
The way our society is designed won’t allow me to take care of myself the way I need to. Our society is not designed to help keep autistic people alive and able to function well. I will be 48 in June, and I was already considered an autistic elder in my early 40s even though I have only been officially diagnosed for about 11 years. Based on the 2022 statistics, I am ten years away from the high end of the average life expectancy of an autistic person and my health continues to decline.
I am living on borrowed time, and I don’t know how much time I have left.