• J.R. Reed

The Pain of Grief When You're Autistic


For the past five days I’ve sat down at my computer numerous times in an attempt to write this piece. I could never get more than a few lines in before all the negative memories started flooding through my Aspie brain, which normally rolls along at well over 100+ MPH.

The sadness and pain overtook me and on several occasions, I began to cry. So here I sit this morning with my car in for repairs and me having two hours to sit around a waiting room with little to do except suck it up and knock this out.


Here we go...

Six weeks ago, I lost my grandson after he fought four hours to stay alive. He was born with underdeveloped lungs and my daughter and her husband had the incredibly difficult choice to take Hayden off a respirator and let him go.

To say I was devastated would be an understatement. My only child had given birth to my first grandchild and due to COVID, I never got the chance to see him, much less hold him or touch him. It tore me apart and for the next week I retreated to my bed, getting up only to use the bathroom and to get something to drink from the kitchen from time to time.

I stayed off social media and initiated no communication with anyone for a couple of weeks. I felt grief to a level unimaginable and it hurt. A lot.

On the day Hayden died I received a text from someone I’ve known for more than twenty years. He was texting me about something else and I briefly explained what happened and said that I would get back with him when my head was back on straight. He texted me back and the words I read both shocked and enraged me.

I’ve heard that you people (those with autism) don’t really do feelings. How does that work for you? Do you feel anything, or does it just kind of go over your head and pass you by?

I don't even know where to begin with that text. My first thought was that I wish he were in front of me so I could show him how “us people” do feelings. Most specifically anger at ignorance and insensitiveness.

But the answer to his question is yes, we do feelings, although different people on the spectrum process them in different fashions. And we all process grief in different ways. I once dated a woman who had Asperger’s and though we were similar in many ways, we were also vastly different in others.

I tend to wear my heart on my sleeve and show my emotions with little problem, while she tends to keep her feelings inside, choosing to process them on her own. Both of us have feelings and are capable of feeling grief, we just go about it in different ways, neither of which is wrong.

I felt overwhelming grief at the loss of Hayden and six weeks later, I’m still processing it, though not nearly to the level I was a few weeks ago. This isn’t the first time I’ve had to process intense grief.

Eighteen years ago, when my daughter was five, my dad died from colon cancer. His last month was rough and the last couple of weeks were filled with hallucinations, moments of dementia, yelling at family for no apparent reason and other assorted occurrences that were far from who he was.

He passed in the middle of the night and the next day I had to tell my daughter that her Papa, her hero, was gone and wasn’t coming back. It was the hardest thing I think I’ve ever had to do, and it crushed me like you cannot believe.

This was around the same time her mom moved out and I was awarded full custody of my daughter. A few weeks later I went to the shelter and picked out a dog that turned out to be the most loyal pet and the best friend we had for thirteen years.

As if my daughter hadn’t been through enough, a couple of weeks later her hamster, Buttercup, died. I had a sliding glass door in my bedroom and on the night Buttercup died I was walking into my room and I heard my daughter talking.

I stopped in the doorway and slowly peered inside. What I saw and heard broke my heart yet again. With Lucy, our dog, in the back yard, my daughter had the sliding door open just enough so her head would come in. She was sitting cross-legged on the floor, crying, and was talking to Lucy.

“Lucy,” she said. “Papa has left me; my mom has left me, and Buttercup has left me. Please don’t leave me, Lucy.”

That was more than I could handle, and I immediately began weeping. I retreated to my home office for a few minutes until I could compose myself and then I went back to my bedroom to comfort and reassure my daughter.

Why am I telling you these stories? To prove that we “do feelings” in our own way and that even though we’re on the spectrum, we do feel grief and process it in our own ways. We tend to get stereotyped as having no feelings or not handling feelings well and that’s simply just not the case.

We’re individuals, and as such we process and deal with things in our own individual way. This is just one example of how we need to help educate Neurotypicals about who we really are and how we operate.

Yes, it can be a hard to get a handle on us as a group, since we’re varied and unique in our approach to the things that life throws us, but when they realize that when it comes to grief and to feelings in general, we’re not so different from everyone else.

Once we can get people to understand us, we can achieve autism awareness and once we achieve a level of awareness, then we can finally begin working on the ultimate goal, which is autism acceptance.

How do you deal with grief and feelings in general? Do you have stories of people thinking you don’t handle them properly? Share your stories with us so we can all learn and get a conversation started.

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