The Spectrum of Loss: Grief Through the Autistic Lens

Grief, a penetrating human experience, is universally felt yet uniquely processed. In the past, psychologists referenced the five stages of grief: denial, anger, bargaining, depression, and acceptance. As grief—in its raw and unfiltered form—affects each individual differently, these stages do not fully encapsulate the experience of grief, especially not for the autistic experience.

The recent passing of two of my grandparents in one month unveiled these differences starkly. First, my 83-year-old grandpa passed. I was aware of his declining health after a fall and subsequent stroke. I had seen him on video calls multiple times since those incidents, but when I visited him I was unprepared for the sight of his frail body in his hospital bed and the sound of his raspy breaths as he struggled to breathe. The shock and devastation triggered an autistic meltdown, an intense reaction reflecting the overwhelming sensory and emotional overload.

He was moved home for his final hours, and our family waited in a heavy, somber atmosphere. His passing the following evening was marked by a silent, motionless struggle, his pulse steadily dropping and, finally, not registering at all. It was a traumatic spectacle that had etched itself into my memory.

Barely three weeks later came the news of my 85-year-old grandma’s cardiac arrest, which meant another mad dash, where I was met with the sight of her frail dead body, with her nose and ears stuffed with pieces of cotton.

In the autistic mind, grief doesn’t neatly follow a logical pattern. Instead, it’s a tangled bundle of trauma, isolation, depression, and sadness—a heavy knot that resists untangling. Grief for autistics isn’t a straightforward cause-and-effect scenario, as often seen in behavioral therapy. It’s a maelstrom of pent-up emotions, recurring emotional tsunamis, outbursts, and disorientation, all of which can manifest at the most unexpected times and significantly impact an autistic’s daily life on multiple fronts.

Autistics often thrive on sameness and routine, and grief and loss are the most disruptive of changes. The complexity of emotions surrounding grief may be amplified for autistics with increased social communication challenges and heightened sensory sensitivities.

Research indicates that many autistic individuals, especially those perceived as having significant social communication challenges, intellectual disabilities, or labeled as having more "behaviors," are often shielded from discussions and processes related to illness and loss. This well-intentioned measure—intended to be protective—can paradoxically contribute to more distress, exacerbating feelings of isolation and misunderstanding that are already prevalent in the autistic population. Social communication challenges could further skew the ability to outwardly express feelings during grief, potentially causing autistics to miss out on support from their community. The revolving door of support staff and therapists in our lives, coupled with the paucity of peer support networks, further intensifies the destabilizing impact when family anchors are lost.

Research also indicates that grief can significantly affect the mental health of autistic individuals. Autistics often process emotions and sensory inputs differently, and intense emotions like grief can be particularly overwhelming. For this population, who may already struggle with coping skills, dealing with grief can be even more challenging. It's worth noting that autistic individuals have a higher co-occurrence of depression and anxiety. The usual coping mechanisms may not be sufficient to navigate the intense emotional experiences associated with grief and loss. Additionally, any increase in neuropsychiatric behaviors during this time, especially among those with social communication challenges, may be misunderstood as non-compliance and handled clinically rather than empathically.

Autistics can be deeply affected by the emotional states of those around them. This is a population that may have challenges with coping skills and mechanisms, even in less emotionally intense scenarios. In the context of loss, autistics are not only dealing with their own grief but are also immersed in an environment of waves of grief from people around them. This can be especially challenging if those around them are themselves trying to cope with their own grief, and therefore less able to provide the usual level of support and understanding of the autistic’s emotional needs.

Adding to the complexity is an additional layer for children of immigrants like me, with familial ties spanning continents. Given that autism and travel do not make the best of bedfellows, geographical and cultural distance can mean fewer experiences with death and grieving processes, which might otherwise help in forming coping mechanisms. For autistics, who may rely more on structured experiences and familiarity, this can be particularly disorienting.

I was fortunate to witness in person, and be involved in, the 13-day South Indian rituals around death. In a sense, it was a period of collective grief marked by a continuous flow of relatives and rituals, with a role for everyone, and where aspects were given closure piece by piece. It was in effect a structured system built up over centuries for processing loss.

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But, all such systems are oriented towards a neurotypical experience of handling loss and grief.

I had to wonder, why cannot there be a parallel structured coping system and supports that can aid autistics in their unique grieving process?

Understanding and helping autistics adapt their approach to grief is crucial, allowing them to process loss in a way that respects their unique experiences and needs. This understanding not only benefits autistics but enriches the broader conversation about grief and mourning, reminding us of the diverse tapestry of the human experience.