‘I didn’t feel my grief was validated’ - An Autistic experience of navigating grief

Guest Contributor, Kyra Thompson, shares a deeply personal insight into her experience of grief as an Autistic woman from a Caribbean household.

When I was 15, my brother was in a car accident. I remember the day like it was yesterday, waking up with a fright to a booming voice telling me, “we need to go to the hospital.” I remember walking to the bathroom in a daze. Everything felt so unreal. Even while brushing my teeth with shaking hands, I didn’t know whether I should laugh, cry or scream. Everything just felt numb.

When we got to the hospital, I remember seeing everyone’s distraught faces, an elder collapsed on the floor and a crowd of people around my brother. Even when he was lying on the bed, I couldn’t comprehend what was happening or how I should feel. I didn’t understand why I wasn’t reacting like them, and soon others started to question the same. I felt that my grief was not valid because it wasn’t appropriate to my family.

It’s taken me nearly nine years to understand that there is no right or wrong way of grieving. During that time, I learned about disenfranchised grief—any grief that goes unacknowledged or unvalidated by social norms. It can refer to grief that society assumes 'should’ be less significant, for example relating to the death of a pet or an estranged family member, and it can also refer to expressions of grief that are not considered societally 'typical’. We’ve all heard the saying, ‘people grieve in different ways,’ so why do we still shun those who don’t conform to societal standards of grieving?

“It’s taken me nearly nine years to understand that there is no right or wrong way of grieving.”

I come from a Caribbean household where death, funerals or accidents are a chance for people to express their emotions towards the person involved, whether that is through communal support or sharing their sorrows. 

A common misconception about Autistic people is that we ‘lack emotional intelligence’ because many of us express our emotions against social norms. Unlike my family, I resorted to laughing or attempting to make others smile instead of crying due to these new emotions of grief being uncomfortable to sit with. I didn’t understand what or how grief should be expressed, and some of my family only saw that as disrespectful.

Navigating the world as an Autistic person can be difficult, especially when you’re learning to understand new emotions and feelings. Many Autistic people experience sensory differences where we may be hyper-sensitive (heightened sensitivity) or hypo-sensitive (reduced sensitivity) to our environment, and these differences often impact the way we see the world.

“It felt like everything stopped in time, and I couldn’t process what was going on around or within me.”

When I arrived at the hospital, I was immediately overwhelmed by the crying, bright lights, beeping of the monitors, and the hospital staff coming in and out - it all became too much. I couldn’t comprehend what was happening, why it was happening or how it happened. Everything felt heightened, and I struggled to process the chaos. The feeling of overwhelm led me to experience emotional dysregulation where I found it difficult to identify, understand and process my emotions.

After weeks of overwhelm, I went into a shutdown where I became non-speaking and often zoned out to disengage from the environment. I wanted to escape reality and go into a fantasy world where chaos wasn’t present. It felt like everything stopped in time, and I couldn’t process what was going on around or within me.

It wasn’t until we found out the prognosis of my brother that I could no longer control my state of mind, and went into a hyperventilating state. It felt like the ground beneath me was crumbling and the air was being sucked out of me. I broke down crying from finally understanding how serious the situation was, and it felt like confirmation to my family that I was indeed a ‘human being’.

This experience confirmed to me that there is limited support and resources for Autistic people and others to understand their way of grieving. I was lucky enough to have some family members who understood my way of thinking and why I struggled to express my emotions during that time, but not everyone is so lucky. There needs to be a community for Autistic people experiencing grief to openly communicate their thoughts and feelings, and space for them to learn how to process their emotions.