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The recent loss of my beloved 23-year-old miniature poodle Pluto revealed the profound differences in how autistic and non-autistic people experience and express grief. While bereavement is both a deeply personal and social process, autistic grief often diverges from societal expectations in ways that are misunderstood or even invalidated.[1]Understanding the Neurodiversity of Grief: A Systematic Literature Review of Experiences of Grief and Loss in the Context of Neurodevelopmental Disorders (Arcari Mair et al., 2024) In this article, I explore how autistic people grieve.
Introduction
Grief is not only an internal experience but also a social one, shaped by cultural norms and communal rituals. Society has expectations for how we should mourn, yet these norms often do not align with how autistics process and express loss. This misalignment can lead to feelings of alienation, frustration, or even shame when our grief does not conform to conventional standards.[2]How Autistic Adults Experience Bereavement: An Interpretative Phenomenological Study (Corden, Brewer, & Cage, 2023)
For some of us, solidarity comes in the form of a shared autistic understanding of grief. The autistics in my life instinctively knew how to support me. They shared their own experiences of loss without expectation or demand, providing a quiet yet powerful acknowledgment of my pain. This was a gift that allowed me to grieve without explanation or justification.
Conversely, being around non-autistic individuals was exhausting. I had to mask my grief, carefully calibrating my expressions to meet social expectations while battling overwhelming sadness. Around my autistic partner, son, and friends, however, I could simply exist in my grief without pressure to perform or reassure others.[3]How Autistic Adults Experience Bereavement: An Interpretative Phenomenological Study (Corden, Brewer, & Cage, 2023)
While bereavement and autism have been extensively studied separately, research specifically examining how autistic individuals experience grief is still emerging. This article aims to provide an overview of existing research on autism and bereavement, as well as to share insights from my 27 years of clinical practice working with autistic adults navigating loss.[4]Understanding the Neurodiversity of Grief: A Systematic Literature Review of Experiences of Grief and Loss in the Context of Neurodevelopmental Disorders (Arcari Mair et al., 2024)
Impacts of change, loss, & uncertainty
Bereavement fractures a person’s world on every level—relational, practical, and spiritual. For autistic individuals, who often find solace in routine and predictability, the loss of a loved one can feel like the ground beneath them has crumbled. Grief doesn’t just bring sorrow; it dismantles the sense of stability we rely on, leaving us disoriented in a world that suddenly feels unfamiliar.
My life had a rhythm, a quiet constancy with Pluto woven into every moment. Research shows that autistic individuals engage the same parts of the brain for human connection as they do for their bonds with animals.[5]Seeing More Than Human: Autism and Anthropomorphic Theory of Mind, (Atherton, 2018) Perhaps that’s why, for so many of us, the deepest, most unshakable relationships are with animals. His death wasn’t just the loss of a companion—it was the collapse of the structure that held me together. I hadn’t realized how much he shaped my days until the absence of him left them hollow. There was no reason to get out of bed in the morning, no tiny paws clicking across the floor, no warm body curled beside me at night. The house felt empty, too quiet. I still found myself listening for his cough in the dark, ready to check his breathing.
In many ways, Pluto was my life, we had been through so much together, travelling 23 years. In my darkest moments, he was my tether, my raison d’être. Without him, I was unmoored, staring into a future that felt unbearably empty. What now?
My assistant Hailey helped me find meaning in my grief. She told me:
“This time, where you feel like this, is needed and necessary. It is very painful right now, but for me, I also always find it sort of beautiful to be so broken over the loss of someone, as it shows how much meaning and value they brought to my life. I think by feeling so broken after, I always feel like I have evidence of how much I loved them.”
Beyond the grief of his loss, what devastated me most was losing the one being who had loved me best. The one presence in my life whose love was absolute, unwavering. And the terrifying certainty that I might never feel that kind of love again.
Guilt
Many autistic people experience grief in ways that are not easily recognized by neurotypical friends and family. This can lead to painful misunderstandings, where autistic expressions of grief are misinterpreted as coldness, detachment, or indifference.
The autistic people I’ve spoken with carry a deep and complicated guilt about how they experience grief. There’s often an added layer of distress—not just over what they feel they could have or should have done, but over the way their emotions manifest, or fail to. Some, like me, cry at funerals, overwhelmed by the flood of sadness around them. Studies using brain imaging and physiological measures have found that autistic individuals exhibit typical or even heightened neural responses when witnessing others in distress.[6]Empathic brain responses in insula are modulated by levels of alexithymia but not autism (Bird et al., 2010)[7]Emotional contagion for pain is intact in autism spectrum disorders (Hadjikhani et al., 2014) This intense empathic resonance can cause emotional overload.
Others don’t cry at all and are left wondering, Why don’t I feel anything? What’s wrong with me?
One of the most devastating events of my life unfolded because of this disconnect. When my father-in-law—whom I called Papa—died, my grief did not look the way others expected it to. And because of that, I lost more than just him.
It was complicated. I loved Papa. In many ways, he was the father I never had. With no contact with my own dysfunctional family, he was one of the only parental figures in my life who truly saw me. He was a grumpy man most of the time, but when he saw me, his whole face lit up. That was what I held onto—the warmth of his smile when I walked into a room.
But he was also sick. So sick. He despised hospitals, hated having his body poked and prodded, resented the endless cycle of doctors pumping water from his lungs. I knew he was suffering. His death was not unexpected. But knowing that didn’t make it easier.
Years before, I had lost my budgie, Icky, to cancer. I adored that little bird, and his last moments haunted me—the way his body shook with panic, the way the peace we’d once had was erased by fear. The horror of it clung to my mind, looping on repeat. I knew my brain—I knew how it latched onto pain and refused to let go. And I knew I could not bear for the same thing to happen with Papa. I could not let my last memory of him be his lifeless body in that bed. I needed to protect what I loved most about him: the way he smiled at me.
So when my mother-in-law asked if I wanted to see him one last time before the ambulance came, I said no. It wasn’t that I didn’t love him. It wasn’t that I wasn’t grieving. It was that I was. And I needed to grieve in a way that wouldn’t destroy me.
I didn’t know I was autistic at the time. I only knew that my mind clung to the unbearable, that I couldn’t erase what I didn’t want to remember. So I kept my distance. I didn’t go to the visiting hours. I went to the funeral, but I wasn’t around much afterward to help. It never occurred to me. If I need help, I ask for it—I don’t like people intruding on my space, and I assumed others felt the same.
But my mother-in-law didn’t see it that way. She saw my absence as indifference, my silence as coldness. And it hurt her deeply. So deeply that it shattered our relationship.
There was no way to explain it to her in a way that she would understand. No way to make her see that my grief was real, even if it didn’t look the way she expected. So in the end, I lost them both—Papa and her.
Meaning & connection
It is the time you have wasted for your rose
that makes your rose so important.
– The Little Prince
When Pluto died, I found myself in an existential crisis. Some people told me I would see signs of him, that love does not simply vanish. Others in past discussions—just as certain—insisted that nothing exists beyond life, that when we go, we are gone. No afterlife, no lingering presence. Just absence.
Had I lost Pluto completely? Was he truly gone, not just physically, but in every possible way?
Buddhists hold vigil for 49 days, believing it takes that long for a spirit to fully leave this world. I like that idea. I wasn’t ready to let Pluto go—not yet. I left the Christmas tree up because he loved curling up beneath its glow. I left the little TARDIS ornament on the tree, because he always watched Doctor Who with me.
Every morning, I turned on the lights and pressed my arms around that prickly tree, whispering, ‘Good morning, Pluto’. Every night, I turned the lights off and hugged it again. “Goodnight, Pluto.” It was my ritual, my way of holding onto him, even as the days without him stretched on.
When his memorial items arrived, I placed them gently on the piano beside the tree—a small paw print, a beautiful wooden box with his ashes engraved with Sweetest Little Guy. It was my son who wanted the memorial items. I did not. I am so so glad that he asked me to get them. They have helped me stay connected to Pluto.
Forty-nine days came and went, and still, I wasn’t ready to say goodbye. Eventually, the dust from the tree began to bother me, and I had to take it down. It felt like another loss, another severed thread. But I kept his memorial close, a quiet space just for him. And I still turn the lights on and off.
The concept of continuing bonds in grief has been explored in research, highlighting the ways people maintain a connection with lost loved ones.[8]Continuing bonds: New understandings of grief (Klass, Silverman, & Nickman, 1996) Studies suggest that maintaining these bonds can facilitate emotional adjustment rather than hinder it.[9]To continue or relinquish bonds: A review of consequences for the bereaved (Stroebe & Schut, 2005) A systematic review found that continuing bonds help individuals reconstruct meaning after loss, particularly when the bereavement process is complicated.[10]The role of continuing bonds in coping with grief: A meta-analytic review (Root & Exline, 2014)
I read a book about animals who visit their owners after death. I wanted to believe. Maybe Pluto was still with me in some way. Maybe love didn’t just disappear. But I don’t know. I still don’t know what happens after we die. And more than ever, I linger on that question—not just for Pluto, but for myself.
But one thing I did know: I had to grieve, and I had to grieve hard. If I didn’t, I knew it would turn to trauma—into something that festered and forced me to turn away, to avoid, to forget. And if I forgot, if I buried my grief too deep, that would be the moment I truly lost Pluto.
Sue Johnson, the developer of Emotionally Focused Therapy—a therapy approach that focuses on the emotional bonds and attachment patterns within relationships[11]Love Sense: The Revolutionary NScience of Romantic Relationships (Johnson, 2013)—said that when we form a secure attachment to another, that bond transcends death. I want to believe that. Because even though Pluto is gone, I still feel him woven into my life in ways that are quiet but certain.
Autistics find ways to reconstruct meaning, to hold onto love even when the world tells us to let go. We don’t cling to grief because we are unwilling to move forward—we hold on because those bonds don’t end. They shift, they transform—but they never truly break. It is a process of making sense of their loss, often involving talking about the deceased, reflecting on their legacy, and creating a sense of ongoing connection.[12]Continuing bonds: New understandings of grief (Klass, Silverman, & Nickman, 1996)
And then there is my autism…
There are some thoughts you simply cannot share with non-autistics—they would misinterpret what I meant.
For example, I thought that we may as well get another dog, as the house is already set up for it.
The silence in the house after Pluto died was unbearable. The absence of paws clicking on the floor, of quiet sighs, of the rhythm that had shaped my days—it was all too much. And so, before long, we got another dog. It wasn’t about replacing Pluto. It was about finding a way to continue on. Also I had all this love and nowhere for it to land. I’ve heard grief described as love with no place to go. There was this tiny black miniature poodle who needed rescuing. It felt right. It felt like honoring Pluto in a way that mattered.
Mowgli didn’t take the pain away. He didn’t make Pluto’s absence any less heavy. I did not share Mowgli with anyone for two months after we got him. People’s excitement, their joy over a new pet—I wasn’t ready for that. I didn’t want congratulations.
I spoke to my therapist about it, about the guilt that gnawed at me. She reassured me: Anyone who truly knows you would never think badly of you for saving another little dog. And yet, I still felt it—this lingering worry that my son, or someone else, might misunderstand. That they might think I was erasing Pluto, when in reality, I was just trying to survive without him.
In some ways, Mowgli helped us keep going. The routine of feeding, walking, caring—it was still there, still familiar. But grief doesn’t follow a straight line. Love doesn’t either. And somewhere between the pain and the practicality, I was just trying to figure out how to exist in a world where Pluto was no longer curled up at my feet.
Special interests
Autistic grief often intertwines with our special interests, serving as both a refuge and a means to process loss. The intense focus characteristic of our passions can also define our attachments to loved ones, making their absence particularly disorienting. For many autistic individuals, special interests are more than mere hobbies—they are lifelines, providing structure amid chaos and comfort during upheaval. In times of grief, these interests become vital coping mechanisms.[13]Understanding the neurodiversity of grief: A systematic literature review of experiences of grief and loss in the context of neurodevelopmental disorders(Arcari et al., 2024)
After Pluto died, I immersed myself in writing, channeling my energy into my book, Autism and Love. This endeavor was not just a distraction but an anchor, offering stability in a suddenly unsteady world. Special interests provide familiarity, predictability, and a sense of control when everything else feels untethered.[14]How adults with an intellectual disability experience bereavement and grief: A qualitative exploration (McRitchie et al., 2013)
A loved one can become a special interest for an autistic person.
I had two cats when I was younger, Tiger and Elfin, simultaneously. Tiger was my world—my focus, my special interest. Elfin was just… there. That’s how it is for me with everything outside my special interests—background noise, a presence I don’t fully register. When Tiger was hit by a car at just three years old, the devastation was immediate and crushing. Surprisingly, my affection quickly transferred to Elfin, who then became my special interest, and my grief for Tiger just sort of evaporated.[15]‘A certain magic’—autistic adults’ experiences of interacting with other autistic people and its relation to quality of life: A systematic review and thematic meta-synthesis (Watts et al., 2024) I remember feeling guilty that this cat that I loved so much now, had been largely irrelevant to me prior to the loss of Tiger.
Elfin lived for 23 years, a steadfast companion through countless life changes. Before he passed, I had a premonition—I sensed it was coming. When he finally left, it was sad but not catastrophic. It felt different, softer, as if he had quietly assured me that I would be okay.
Autistic individuals may experience and express grief differently, often finding solace in their special interests or through unique attachments. Recognizing and supporting these individualized coping mechanisms is crucial for their emotional well-being.[16]On the ontological status of autism: The ‘double empathy problem’ (Milton, 2012)
Autistic burnout, disordered eating, & substance use
Research shows that the demands of bereavement can increase the risk of autistic burnout. Grief isn’t just emotional—it’s a whole-body experience, a process that can unravel even the strongest routines. Autistic burnout is characterized by chronic exhaustion, reduced tolerance to stimulus, and loss of skills, often resulting from prolonged stress and the need to mask autistic traits to conform to societal expectations (Raymaker et al., 2020). The grieving process, with its inherent emotional and social demands, can exacerbate these stressors, leading to burnout episodes.
For me, it wasn’t just the loss itself but everything surrounding it. The social engagement—the vet, the phone calls, the people—each interaction chipping away at my reserves until I found myself slipping back into burnout.
Thankfully, this time, it lasted only a couple of days. I keep a vigilant watch over myself, recognizing the warning signs, and I have excellent tools from my book, The Ultimate Guide to Autistic Burnout, to help me navigate these moments. But even with all the awareness in the world, grief still takes its toll.
Grief also changes how we relate to food, and for neurodivergent individuals, these changes can be profound. Emotional eating, or the tendency to consume food in response to negative emotions, has been linked to coping mechanisms in the face of stress and loss.[17]Emotional eating in overweight, normal weight, and underweight individuals(Geliebter & Aversa, 2003) My partner and I found ourselves eating cake—what we called grief cake. We ordered so many grief cakes. Small, four slices each. But we must have had at least 25 of them.
The store eventually ran out of the chocolate mousse cake we had been relying on, so we had to switch to strawberry. It became a strange, funny little ritual. The absurdity of it made the grief more manageable. It gave us something to hold onto when everything else felt too heavy. Even now, it still makes us laugh.
Additionally, research suggests that autistics may be at a higher risk for developing disordered eating behaviors, including restrictive eating patterns or sensory-driven food aversions.[18]Child ADHD and autistic traits, eating behaviours and weight: A population-based study (Harris et al., 2022)[19]Investigating the Presence of Autistic Traits and Prevalence of Autism Spectrum Disorder Symptoms in Anorexia Nervosa: A Systematic Review and Meta-Analysis.(Inal-Kaleli et al., 2024) These patterns can be further disrupted by grief, leading to either increased food intake for comfort or reduced appetite due to distress.
And then there’s addictive behaviours. When faced with overwhelming loss, some neurodivergent individuals turn to substances to cope. The need to numb, to quiet the relentless thoughts, to escape the unbearable weight of absence—it makes sense. While specific research on substance use in autistic individuals during bereavement is limited, it is recognized that individuals experiencing significant stress or grief may resort to substance use to manage intense emotions associated with loss.[20](‘Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew’: Defining Autistic Burnout (Raymaker et al., 2020))
Grief has a way of exposing every vulnerability, every coping mechanism we rely on to get through. And whether it’s burnout, food, or substances, the challenge isn’t just surviving grief—it’s making sure we don’t lose ourselves in it.
Conclusion
Autistic grief is a deeply personal and often misunderstood experience. Many autistic individuals wonder if their grief responses are “wrong” or if they lack empathy. In reality, autistic people grieve just as profoundly as neurotypicals, but in ways that may not align with societal expectations.
Understanding and supporting autistic individuals in bereavement requires recognizing these differences, acknowledging their grief processes, and offering accommodations that help them navigate loss in a way that feels safe and validating.
For those who have experienced loss, sharing these stories can help create a more compassionate and informed approach to autistic bereavement.
If you have lost a loved one, how has your experience of grief unfolded?
References
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