Autism & Death

Death is a difficult subject.

It is something we prefer to not-think about as a nebulous, hazy cloud on a distant horizon.  It is something we would prefer to not sharpen into focus with words or edges.

Death happens to other people.  

It doesn't happen to us.  And it definitely doesn't happen to our children.

Until it does.

I've been blessed (as a former nurse) with the honour of sharing this profound event with many people, sometimes in the company of their loved ones.  I'm also privileged to live in a culture where funerals and wakes are a public celebration of life, as well as an opportunity to express grief and loss.  Irish wakes are often the saddest, funniest, most deeply connecting social events we attend.  Because of my experiences, death doesn't repulse, or even scare me all that much.  Quite the opposite, I honour it.

But, no parent should ever bury their child. 

In the last few months, two fellow special needs mums lost their sons.  Over the years, many more of my special needs circle have buried children.  When this happens, I hold my kids a little bit tighter, feeling guilty gratitude that it wasn't my kid being prayed for.  But every time I attend a funeral, or send condolences, I am reminded of  how vulnerable our kids are.

The average life expectancy of an autistic person is 54.  Throw severe autism into the mix, and that figure drops to 39.

These are real numbers.

This is because autistic people often have co-morbidities (such as epilepsy), and may lack the ability to identify and manage health issues.  Accidents, often related to elopement, are a major factor.  Isolation, depression and suicide are in the mix.  Horrifyingly, Forbes magazine report the deaths of intellectually disabled people in police custody as a "global pandemic", especially when laced with gender and racial flavours.

But mostly, it's because our kids have been born into a world not designed for them.  Lack of social engagement and access to health care comes up with depressing regularity in the literature.

This is not a self-pitying exercise in victimised hand-wringing.  This is reality.  When my husband and I die, Finian will live at the mercy of strangers.

I very much believe that life is a gift to be experienced, explored, passionately loved/hated, played with, sometimes suffered, learned from, transcended, improved and fully interreacted with.  It is something to dive joyfully into, to be soaked and saturated by, and to be changed completely by.  Life is not meant to be sullenly endured while we wait to die.  We each have an expiry date, and each day endured is a day wasted.

It's hard to sit with a world that doesn't value our special kids and adults. It's hard to not be certain that Finian will continue to be loved, celebrated and cherished as a valuable part of society after I am gone.  I am blessed that he has family and friends who I trust to advocate for him after I've been jettisoned into the ether.  But it's sad that his life expectancy, both in age and quality, is compromised by a blinkered world.