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Parent or Autistic Child: Who Dies First?

WeepPremature mortality in a population-based cohort of autistic adults in Canada. Research from different countries suggests that autistic adults are more likely to die prematurely than non-autistic adults, but these studies do not always investigate male and female individuals separately and do not consider whether this pattern is unique to autistic people or is also an issue for people with other developmental disabilities.

Thank you to Lisa Ackerman of TACA for posting this paper on Facebook  yesterday. Those of us with autistic children, from tots to teens, and especially adults, know that there are many reasons why they face an early grave.  We worry about outliving our children. Of course.  We worry about our children dying young. Of course.  My comment on Lisa's post was, the lack of medical curiosity and training and patience means far lower healthcare. Lack of ability to communicate problems means lack of healthcare. I know that my adult daughters are unable to access most standard care. They need sedation for almost every procedure beyond a basic dental cleaning and a blood draw. We had many EEGs where the nursing staff just hated us, hated that my daughters weren't compliant. And they gave up on us. We never had a pediatric hearing or vision test at an appointment. And if they are sick or have a side effect of a medication or something else that someone in their life wanted to force on them but he lost in court - they can not articulate it in any way. Add wandering, lack of self defense instincts, swallowing and food size issues and more, and you have a recipe for a Mom who lives life on edge 24/7/365 to take care of them.  You know this. We need the rest of the world to learn it.

Citation:

Lunsky Y, Lai MC, Balogh R, Chung H, Durbin A, Jachyra P, Tint A, Weiss J, Lin E. Premature mortality in a population-based cohort of autistic adults in Canada. Autism Res. 2022 May 28. doi: 10.1002/aur.2741. Epub ahead of print. PMID: 35633154.

Abstract

Research from different countries suggests that autistic adults are more likely to die prematurely than non-autistic adults, but these studies do not always investigate male and female individuals separately and do not consider whether this pattern is unique to autistic people or is also an issue for people with other developmental disabilities.

We examined premature mortality in autistic males and females (assigned at birth) in a population-based cohort, compared to males and females with and without other developmental disabilities. Using linked administrative health and social services population data from Ontario, Canada, age-matched males and females aged 19-65 years were followed between 2010 and 2016, and causes of death were determined.

Over the 6-year observation period, 330 of 42,607 persons (0.77%) in the group without developmental disabilities had died compared to 259 of 10,646 persons (2.43%) in the autism group and 419 of 10,615 persons (3.95%) in the other developmental disabilities group. Autistic males and females were more likely to die than non-autistic males (adjusted risk ratio, RR 3.13, 95%CI 2.58-3.79) and non-autistic females (adjusted RR 3.12, 95%CI 2.35-4.13) without developmental disabilities, but were less likely to die than adults with other developmental disabilities (males: adjusted RR 0.66, 95%CI 0.55-0.79; females: adjusted RR 0.55, 95%CI 0.43-0.71).  Read here.

Most common causes of death varied depending on a person's sex and diagnosis. Given the greater likelihood of premature mortality in adults with developmental disabilities including autism, greater attention and resources directed toward their health and social care are needed, tailored to their sex and diagnosis-informed needs.

LAY SUMMARY: This study looked at how many autistic men and women died over 6 years (2010-2016), along with how they died, and compared this to adults who did not have autism living in Ontario, Canada. It found that autistic men and women were more than three times as likely to die as people of the same age who did not have a developmental disability. However, adults with other developmental disabilities besides autism were even more likely to die than autistic adults. This means that we have to pay more attention and invest in better social and health care for autistic people, along with people who have other types of developmental disabilities.

Comments

Linda Higgins

@Emmaphiladelphis

It's been 8 1/2 years since we lost our girl. Some days it feels like yesterday though.

Angus Files

Sorry to read of your loss Linda.I am sure my son will outlive us both.The cost and the care will be competely taken up by the Goverment which I wish I could charge them for just now estimates going by what I read are a few thousand pounds per week the more it costs the better I feel as it it just makes the sums harder for Pharma to justify.

Well done Kim your the best mum the girls could ever have.

Pharma For Prison

MMR RIP

Emmaphiladelphia

@Linda,

I am so sorry for your heartbreaking loss. Did this happen recently?

Bill

Just imagine the high death before age 65 ratio for those with Tuberous Sclerosis/Neurofibromatosis and Fragile X syndrome. Just imagine the seizures heart defects and rare cancers these people have had to suffer through before their early deaths. Do not give me that, "They do not have autism" nonsense! The Lanterman act and similar laws in the sate of California and the United States and Canada says these people have autism so they have autism.

Emmaphiladelphia

The Age of Autism began after 1987.

I would like to see statistics on those with an autism diagnosis who are now aged 30-35.
Equal numbers of BIOLOGICAL males and females since autism is more prevalent in males.

Linda Higgins

My daughter died at 15, in no small part due to the fact that she was non-verbal and couldn't tell me what she was feeling so that I could get her the care she needed immediately. She had a pulmonary embolism (blood clot that burst in her lung) which I've been told may have killed her even if we had gotten her to a hospital immediately, but the fact that she couldn't tell me sealed her fate.

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