Autism and Grief – Talking About What We Don’t Really Want To Talk About

Death.

I know. It’s not exactly a subject line that makes you keep reading. Very few people want to discuss it. It is one of those topics that is unsettling and hard to entertain.

We can avoid talking about it. But let’s face it; it is inevitable for every single living creature. Even humans.

But, as my own niece with autism taught me, the price of dodging the discussion is very high - especially for those who live with autism.

My last blog (https://www.autismaspirations.com/2021/02/11/autism-and-grief-talking-about-what-we-dont-really-want-to-talk-about/) was to be the first of several blogs dedicated to the subject and my intention was to share more of what the research taught me.

And then, very unexpectedly – my mother died.

Five hundred miles away, I didn’t even know she had been admitted to the hospital until it was too late. She had told my sister she would call me to fill me in on her short stay.

She never did.

I was knee deep in the research on grief and autism for an upcoming presentation for a major autism conference and I was thrust into the depths of grief - living the death of a parent for the second time in under two years.

My instinct was to cancel the presentation, the research and even the writing.

Acute pain.  Shock.

This time I couldn’t call my mom to have her encourage me to keep going.

Just as I resolved to halt my inquiry into autism and bereavement, a strong impulse tugged at me to go back to it. Dismissing the inclination, I assumed it was just the guilt of letting others down.

But the impulse only grew stronger.

Grappling with the harsh reality that both of my parents were now gone, I dipped back into the reading – testing the waters so to speak. Ironically, it was in that dip back into the research and the notetaking that I discovered I needed this research as much as it needed me.

Everything I read took on new meaning – a heightened relevance. Journaling my own reflections on what I was learning guided me on an emotional and yet oddly comforting path. I was no longer just reading about someone else’s grief journey because the stories were now seen and felt through my own experience.

I had already learned that autism presents unique challenges in bereavement. Even more disturbing was the truth that a lack of support following bereavement (for anyone) increases the risk of psychiatric problems.

Historically, individuals with disabilities have not had access to appropriate supports during times of loss or grief, often being excluded from rituals related to loss (e.g., funerals), not being prepared for an inevitable loss, not being provided supports or time to process the emotions related to grief, and, in some cases, not being told of the loss if staff or caregivers deem that the individual has a limited understanding of it.

Navigating the stormy waters of grief myself, I was angered that anyone would neglect supporting another human being through such a traumatizing time. Here I was with a strong network of support - a close family who shared my grief and friends who cared very much to keep checking in. On top of that, I am also equipped with the language skills, emotional intelligence, coping skills and self awareness to be able to understand the grief and access the people and activities that will ease the pain.

I couldn't imagine surviving the death of a loved one without all of those supports in place!

People with autism are known to struggle with transitions. If we as parents, educators and caregivers see the need to prepare those we love with autism for changes in the routines and activities of daily life, how much more imperative is it that we proactively work towards preparing for life’s inevitable and life changing losses? Changes are an inherent part of loss and death. The confusion and anxiety brought about by unexplained changes may be even more detrimental to an individual with autism long term.

How can we possibly ignore or avoid doing whatever we can to build the support system and skills that will enhance physical and emotional wellbeing for a lifetime? As much as we might want to shelter those we love from any pain or heartache, it is simply unresponsible to do so because life without pain and heartache is not reality.

All humans, especially those who live with disabilities or differences that make it harder for them to cope with life’s ups and downs have the right to be supported in the ways that will help to ease the pain of grief and transform their experiences into opportunities for growth.

In this series we will explore HOW we can be supportive and teach the necessary coping skills needed to thrive in spite of the hurdles of life.

As always, I want to hear from you! Please share your thoughts and as always, please share this post with anyone you know whose life is touched by autism.