Lived Experiences of Grief

Ebehitale R. Allen-Okojie “Spriggy” – Loss of a loved one

I have dealt with a lot of grief. Each experience has felt different, especially with death, due to where I was in life and what I was experiencing, who the person was to me, and how they passed away. In childhood, the only person I called “Grandpa” died from cancer; in adolescence, my mum's best friend died from a different cancer; in young adulthood, my best friend went missing and was found dead by suicide; and in adulthood, I lost each of my parents suddenly within two years. When I was younger, I struggled to show sadness outwardly. I knew something had happened, but instead of crying, I became quieter and “stoic,” checking on others because I felt anxious. The overwhelm hit me years later, when I'd break down, cry uncontrollably, ask unanswerable questions, and struggle with the change and the loss. 

Throughout my life, my strongest coping strategy has been reaching out to someone I trust. I have sought individual and group therapy, peer support, and crisis lines when I needed support with some distance. As an adult, I have learned that the healthiest thing I can do is allow myself to feel—cry, scream, remember—and show myself compassion. I used to avoid things that reminded me of the person lost because it made me sad; but I realized that avoiding happy memories made the grief worse. My advice to other Autistic people grieving is this: even though the stages of grief seem orderly, grief itself isn’t. Surround yourself with what feels safe and comforting to and for you. Also, have at least one true confidante, and know it’s okay if you don’t have the same capacity to maintain all relationships while grieving. 

Courtney Mineros – Grief with death of a loved one 

When I was 14 years old, my grandmother passed away, a normative experience for many children at various ages as their first experience of someone close to them passing away. My grandmother was my legal guardian, raised me, and I called her mom; she was my caregiver—the only constant and safe person—who understood me and took time to help me, no matter how silly the task or question. I am a late-diagnosed autistic, so all the extra little things my grandma did for me were not considered “support” in the '90s, so even she nor I comprehended that was what she was doing for me. When she passed away, the pain and just utter feeling of not being able to breathe, the inability to communicate to anyone the physical pain that I felt in my entire body and how lost I felt. Not just lost like a person I loved dearly passing away, but I was lost in the world, wandering lost but not even knowing what I was, what to do, or my purpose. The person who made the world seem a little less confusing and scary was gone, and I had no idea how I would live without her. During those early days of her passing, I got drunk for the first time, which led to using alcohol and later on drugs as an unhealthy coping strategy for feelings I didn't want to feel and social situations. 

It took me over 10 years to process my grandmother's death because I would numb the extreme feelings when it was socially acceptable to do so (aka drinking at parties, inviting friends over to drink) and then I would schedule my life to the point I couldn't possess my feelings the rest of the time. I am thankful for my rigid thinking and the social rules I imposed on myself about drinking; or I would have completely lost myself in substance abuse and physical dependence. I can’t say for sure if masking saved me for all those years in default mode living off what I perceived was expected of me—as it destroyed my mental health in one way, but it also protected my physical health in another way. When processing my late diagnosis, it helped me recognize how I had leaned on my grandma for all aspects of my life. Grieving the loss of someone I cared about came with time—but grieving that feeling of safety and calm that my grandma provided to me is still an ongoing battle. Not until I had started to unpack those feelings, even know how to label them, or describe them properly could I comprehend the loss of support structure that was my grandmother. Labels, awareness, and proper language are needed to help make sure that anyone losing their support structure can advocate for themselves or with the support of others. 

Conner (answers recorded by his mother) – Death of loved one

“My sister went to heaven”. “We were both really young. I wanted to cry a lot. I was angry with cancer. I had a hard time doing things. It was hard to be separated from her. I think of her a lot.” 

“People at the hospital helped” “I used my voice.” “I spent as much time with her as I could.” “I remember the good times we had.” “I felt included and heard.” “Mom told me it's okay to not be okay.” “I would talk about her, use her blankets to wrap myself in, use my voice to share how I am, have someone check on me to see how I am.” 

Daniel Share Strom – Loss of a pet 

When my emotional support Chihuahua, Brain, died, it was one of the hardest things I’ve ever experienced. As an Autistic person, I’ve often felt like I don’t quite fit in, but Brain loved me unconditionally. He accepted me completely—never judging how I spoke, how I stimmed, or how I moved through the world. He was my companion, my safe place, my emotional anchor. When he died, I felt adrift without the one friend who had always been there for me. The grief was overwhelming, and I struggled to process it. I’ve gone through this heartbreak twice—first was with Brain, and then with my emotional support cat Misty just this past summer. Each time, it felt like losing a part of myself. 

Healing took time, but I found ways to cope with my grief. I talked to people I trusted about my pets and shared my favourite memories. Even when I had no motivation, I pushed myself to do small things that mattered to me. Eventually, when I was ready, I opened my heart to another animal. It didn’t replace the love I had lost; it honoured it. My pets helped me through life’s hardships, and by moving forward, I carried their love with me. My advice to others going through this: talk to people you trust, and things you love to do. When you’re ready, get another animal. The pain we experience when they leave us is only matched by the love they give while they are here.

Conner (answers recorded by his mother) – Losing My Service Dog

I am writing about my service dog passing away. She “had cancer and was mighty sick. I felt sad. I was scared of the cancer cause she would never make it. I worried how things would be after. I cried.” 

“The vet clinic helped by listening to me. They also talked to me. They spent time with me. 

I did more sensory things. I did mindfulness. I did deep breathing.” Some ideas that helped were: 

 -looking at pictures 

 -using my voice to say how I was, what I needed 

 -touching the cast of her paw 

 -having people that understood me. 

A.M.: The Grief of Losing a Pet

When one of our two family rabbits died unexpectedly, I was extremely shocked, but I was also very concerned for my brother and sister who were very attached to our rabbit. My sister cried uncontrollably; I tried to console her. I was quite sad as well. We brought him in the house, put him in a box, and placed a blanket over him: hoping the blanket would revive him. We waited around the box for hours, but after a while of him not moving, we realized he was truly gone. The grief felt like an emptiness inside me: like a feeling of depression as the tears rolled down my face.

After our one rabbit was gone, we realized how precious, fragile, and short a pet rabbit’s life can be. One way we coped with the grief was by sharing good memories. Another way we coped was by being very mindful and intentional with our other rabbit: to make sure she was happy, not feeling lonely, and living the best possible life. We would make time to play with her, feed her, and treat her to nutritious food. I personally coped by telling my Jr High English teacher, who was a safe person to me, about the experience. My teacher, having rabbits herself, gave me ideas on how to give the best possible life to my other rabbit: which made me feel less alone in my grief. I encourage all my fellow autistic peers to always have a community of safe people that you can rely on to help cope with the difficulty of losing a beloved pet. Sharing your memories will honour them and keep their spirit alive.

A.M. – Grief over the Loss of Friendship

My best friend, who was also my roommate, and I lived together in a west-end condo for more than one calendar year. When I was unexpectedly hospitalized, he was there with me throughout the process, until I was discharged. He told me we could no longer be roommates and live together after I was discharged, but despite the end of that roommate situation, he continued to check up on me and my mental/physical well-being. He also suggested we continue to hang-out in person for dinners (watching sports, etc.), and I introduced him to the woman I was dating at the time. That, however, was the last time I saw him in person. He texted me one day, stating that he was moving to Calgary, and I continued to text him despite being separated by geographical distance. Then suddenly one day he didn’t answer back, and I realized he had ghosted me, and that was the end of the friendship. It filled me with a mix of emotions, and I started to grieve the loss of his friendship.

It took some time for me to process my grief, and I started to hyper-fixate and reflect on the friendship as a whole from start to finish. The one coping mechanism that helped me get through it, was remembering the lessons that he taught me throughout the friendship and looking back on keepsakes. I think that is a great way to remember someone, and work through grief: by thinking about the good moments and by holding on to keepsakes such as photos and videos. I realized how fortunate I was to have a friendship that was a two-way street, in fact, he went above and beyond to show the true essence of what real friendship is all about. He showed up for me during the darkest period of my life, and as a result, I look back with the utmost fondness and nostalgia in my grief. He personified and optimised what I want and need in the next potential close-knit friendships moving forward. To all my fellow autistic peers, if you’ve never had a chance in your life to experience what I have in true friendship, I hope all of you will have that opportunity.

K.P. – Grief over loss of friendship 

Losing my friendship with V brought a deep and complicated grief. At first, it showed up as anger—anger that she wasn’t putting in the same effort, that she no longer seemed to make time for me, that I wasn’t "enough" to make her stay. But underneath the anger was fear. If this friendship—my closest one, spanning years, continents, and some of my hardest times—couldn’t last, what did that mean for my ability to maintain any relationship? The grief wasn’t just about losing her; it was about questioning my own worth and whether meaningful connections were ever truly secure. 

I don’t think I ever consciously let myself grieve at the time, but I must have in small ways. Now, I’m allowing myself to fully acknowledge the loss, to sit with the grief instead of pushing it away. I recently came across some of our old messages and was overwhelmed by how loving and supportive they were. I didn’t realize how rare that kind of connection was, and while I grieve what’s gone, I also feel gratitude for having experienced it. To anyone going through this kind of grief, I’d say: let yourself feel it in whatever way makes sense for you. Cry, yell into a pillow, write, paint, or talk to someone who understands. Grief isn’t linear, and it doesn’t have to look a certain way—it just needs space to be processed. 

James T. - Loss of support structure due to loss of friendship

I recently lost a piece of my support system, and this loss caused me a lot of grief. It was a close friendship with someone I worked with for over a year and a half. We met through a work project, bonded over shared experiences, and became an everyday source of support for each other. I felt safe opening up about my autism, and she shared her struggles with anxiety. Our friendship grew beyond work, and she was there for me during the worst moment of my life—when my mother passed away. She stayed on the phone with me, helping me stay calm enough to get home. But after I was transferred back to our original workplace, things changed. She suddenly distanced herself, saying we were “just co-workers.” It felt like a punch to the gut, leaving me heartbroken and confused, especially since I had leaned on her during my grief from losing my mother. 

Coping with this loss has been incredibly hard. Therapy has helped me process my feelings and understand the dynamics of our friendship. Talking to a therapist gave me space to express my emotions without judgment. My advice to other Autistic people experiencing friendship loss is to reach out for professional support, lean on trusted friends or family, and allow yourself to grieve the relationship. It’s okay to feel hurt, but it’s also important to find people who genuinely accept and support you without conditions. 

Sam Bull – The Grief of Losing a Romantic Partner

When my romantic partner and I separated back in my early 20s, it was as if the foundation of my life collapsed under my feet. As an Autistic person, I had often relied on a romantic relationship to quiet the persistent belief that I was unworthy of love—a narrative that was often echoed to me by the people in my life. So, when the relationship ended, that belief was no longer repressed. Things such as "Was I too Autistic?", "Did I not mask enough?", and "Of course it ended this way--I'm unlovable." The grief felt like a confirmation of all of that. It manifested as a profound loneliness that I'd never be good enough for someone, and the simple routines we shared became a void that turned my daily schedule into painful memories for months. 

Navigating the loss meant rebuilding not only a new schedule but a relationship with myself. I began intentionally challenging the belief that I needed someone else to confirm I was worthy of love. My advice to other Autistic people to navigate this is to become your own best friend. You are the one constant companion in your own life. Nurturing that bond with yourself, through self-care, honouring your Autistic needs, and refusing to equate rejection with failure, can soften that loneliness and disruption we feel with this type of grief. I was so worthy of love, I just needed to start by giving it to myself.

Ebehitale R. Allen-Okojie “Spriggy” – Loss of a romantic partner

Love is one of those complex emotions/feelings and experiences of our human condition. In my most serious and longest-term relationship, I was the most in love I had ever been with someone to date. Grief shows up for me when losing a partner might be a possibility, or when this does happen. Like other people in my Autistic community, I already have difficulty with social/interpersonal relationships; so, this special connection, now lost– due to the end of the relationship– made me feel depressed, shattered, empty, ashamed, guilty, hurt and heartbroken. Throughout this grief, I had trouble sleeping, eating, being outgoing/happy, and going out to enjoy life. Withdrawing from people and feeling overwhelmed with emotions like anger and sadness led me to many hours of crying, anxiousness, and uncertainty. As much as my grief focused on the ending of an important time in my life with romantic partner, I had to get to a point where I recognized that my special person had my interest, gave me love, familiarity, companionship, acceptance– a sense comfort, security, safety, visibility, authenticity; a social space to be myself freely. 

What I have learned is that love always has a lesson to teach; and the grief from love lost is no different. Since this relationship was the first of its kind for me and so special, I did not know how to cope with the loss of a romantic partner. I felt lost and quickly turned to my loved ones closest to me for guidance and support; my primary coping strategy was being candid about how I felt with my Mum– my best confidante. The grief I experienced was strong and trying to hide how I felt made the experience more difficult to move forward– I had to remain true to myself and my heart. When I spoke to my Mum, I felt catharsis (emotional release) because I would allow myself to cry, tears of whatever emotion came up and speak freely. To my fellow Autistic people out there, I would suggest that they take time to reflect and realize how they felt in the relationship once they are outside of it. Grief may cloud our judgment with difficult emotions, and once we step outside of what we knew and where we are comfortable, we might be able to renavigate our way back to ourselves and our hearts, take a different perspective, be unapologetically raw.

Anonymous – Grief over loss of structure and routine due to divorce 

When my dad decided to split with my mom, it left me in a state of grief and disbelief. I had no clue he was planning to do such a thing, but to my surprise, he did. It plunged me into a troubling mix of outrage and introspection. Instead of maintaining a steady career, he submerged himself in a string of pipe-dream projects where he took lines of credit on our house and sacrificed everything. Someone I once viewed as a role model made choices that jeopardized our livelihoods, including his relationship with my mom. I thought he was making the right decisions, but I didn't know better. The grief I experienced helped shape who I am today and the decisions I will make in the future. 

If someone had told me 5 years ago that my parents would split, I would have thought they were lying. Navigating the loss of a father figure was challenging, especially as someone on the spectrum. Looking back, speaking to a therapist was the best decision I made for my mental health; it supported me during a tough time. The least you can do is talk to a trusted adult—whether a family member, teacher, or counsellor. You are never alone. If you learned anything from this, you should reflect on your situation, talk to someone, and learn how to move forward. Because if I can do it, you can too.

Noah Tomlin – Grief re: employment experiences 

My primary experience with grief regarding employment was in the application process itself, which made me feel many things: frustrated, anxious, angry, exhausted, and isolated. Scrolling through LinkedIn was like being slapped in the face with information overload, even when using search filters. For a while, I tried moving to the local library or coffee shop while job searching, taking my laptop with me and hoping the change of scenery would make the application process easier, but it didn't. Simply looking at so many unstructured, often rambling job postings was emotionally draining. Another obstacle I couldn't overcome was writing cover letters, even though I made a generic template where I could plug in details like the company name and job title, and perhaps a funny anecdote relevant to what I was applying for. Even that became tiring after going through so many applications and chasing every lead, making custom cover letters that I knew would never be read. Eventually, I started submitting applications with just my résumé and no cover letter, then stopped applying altogether, recognizing that I could not deal with the traditional job application process. 

Worst of all was the uncertainty. Most employers will not send a follow-up email to rejected applicants, only to those they've accepted, and being left hanging was far worse for me emotionally than if I had been rejected outright – a rejection letter, at least, meant someone had acknowledged my application existed. The lack of feedback felt like throwing a rock into the river but not seeing any ripples. I eventually found a way around this grief by finding a different method for job hunting. I connected with an employment agency called Specialisterne that helps neurodivergent job applicants reach potential employers, and through them, I was able to find employment. If it weren't for them, I would still be stuck in that rut of grief today. If you’re an Autistic person trying to find work, my advice is this: don’t keep smashing your head against the wall. If scrolling through LinkedIn isn't working, then you need to look at alternatives, such as an employment agency meant for neurodivergent job applicants. 

Conner (answers recorded by his mother) –Losing a School Program

How did you feel when you could no longer go to your school program? 

“I enjoyed going and wanted to go. I got a new teacher and it wasn't good. I wasn't heard. I was frustrated and angry. It did not work for me. I was sad.”

(It reached a point he couldn’t go anymore) “I was so sad and angry when I heard kids going.” 

What did you do to help you recover from your feelings of grief? 

“I used a sensory diet. I used a weighted blanket a lot. My voice was heard. I started homeschooling, learned anywhere, anytime. School became fun. I became happy and got to do cool things. I was less angry and frustrated being included. I share my feelings with safe people. I do mindfulness—like deep breathing.” 

Daniel Share Strom – Grief after graduation 

Graduating university was traumatic for me as a young Autistic adult and led to a prolonged period of grief. In retrospect, it makes sense. I thrived on the structure, tight-knit group of friends, and clear purpose every day that came with my university program. Upon graduation, this ended. I was thrust into a paradigm shift with no plans, most of my friends moved away, and I had no structure or meaning to my days. The job search offered little relief—ask any Autistic person, and they’ll tell you the traditional hiring process doesn’t work for us. I felt hollow, deeply sad, and as if my world had changed overnight. My grief was overwhelming. I spent too much time sleeping and playing video games, barely slept, and felt a hopelessness I thought would last forever. 

Recovery from my grief was a long and multifaceted process. A Mindful Meditation course helped clear my foggy brain. Therapy and working with a life coach gave me a sense of direction. I built a local group of Autistic friends to help combat isolation, and I had someone to talk to at home. Eventually, I decided to pursue a passion and returned to school for something I truly enjoyed. There, I made friends and set myself on the career path I follow today. With support of family and focusing on my strengths, I was able emerge from the dark hole of grief.

Sam Bull - The Grief of Being Autistic  

I believe there is an inherent grief that comes with being Autistic. It's not that I'm sad to be Autistic—I love being Autistic with all my heart—but I grieve that this world is not kind to me or people like me. It makes me feel like an alien, a monster, some sort of creature that many people struggle to understand at best and are actively hostile to at worst. It makes it hard to live, to get a job, to make friends, to interact with people who hold life-changing power over me—teachers, doctors, the police. It makes me sad. Numbingly sad. Afraid. And lonely.

When I feel this grief, I look for other people who understand. I talk with my Autistic friends about how I'm doing or spend an evening with them, parallel playing and info dumping about our interests. The world overall might be scary, but we can craft a smaller world around us that isn't. Look for Autistic friends who share your interests, seek out and join Autistic communities and hobby groups. No amount of self-love will replace the love of a community.

Courtney Mineros – Grief from late-in-life diagnosis 

I experienced late diagnosis grief when I was diagnosed with Autism at the age of 31. The feeling started as relief, that I wasn’t just projecting how I felt and taking space in a group that wasn’t meant for me. At the time, one of my children was diagnosed autistic and another child was awaiting diagnosis assessment—my social circles were convinced that I was just “seeing autism everywhere.” After the initial relief of the validation of my diagnosis, I then started to question the entire existence of my childhood, adolescence, young adult life, and the present with waves of feelings of sadness, anger, and frustration. My biggest struggle with late diagnosis grief is the what-ifs and missed opportunities because I didn’t properly understand myself or get the proper support. The grief sometimes creeps up on me still when I don’t even expect it; that something triggers a memory that is an autistic trait in some form but was never supported or understood by myself or others. That then leads to self-evaluation of that memory and what it meant, how it could have been different, and the cascade of different emotions that follow. 

Moving forward, I try to remind myself to focus on the present and future. I can’t change my past, how I was perceived, or my lack of understanding of the past, but I can try to support and advocate for myself and others in how I am perceived and understood now and in the future. I focus on my children and that we have “the same brain”—the way I originally started explaining autism to them—that they aren’t alone in the way that I was growing up. I can create the space I needed growing up for my children, read neurodiverse books to them, meet people with all different support needs and different brains, and together be more ourselves—without stigma and shame. We can grow and learn together as a family, which pushes me the most forward and not stay in a place of grief of my late diagnosis. 

Ebehitale R. Allen-Okojie “Spriggy” – Late-in-life diagnosis

Like many other women, girls, and gender-diverse folks, I did not receive a diagnosis when I was younger. As I got older, I began to understand why I moved through the world so differently, and everything made sense with an autism diagnosis. Grieving the life I had already lived was difficult because I never understood why I always felt like an outsider. Learning that there were parts of my life to grieve, which isn’t uncommon with a late diagnosis, made it harder—I didn’t know who I could have been without masking. Could I have been happier or better? Would I be the same person I am today? Sometimes, it feels like I lost who I am without ever knowing who I was—that’s hard to sit with (while still trying to unmask), even though masking feels like survival. Grief brought on strong feelings of shame, guilt, loss, and loneliness. 

Coping with grief from a late diagnosis has been difficult and ongoing. I can’t say the grief will just go away, but I am learning as I go. Being part of groups with others diagnosed later in life has helped me unpack my grief, even when their journeys are not identical to mine. Sharing insights, strategies, and experiences has made coping less isolating because it reminds me that I’m not alone. It has taken years for me to be open about my grief, but trusted, non-judgmental friends and family have helped—I feel less pressure to mask when I know they see the real me. I also find social media helpful for connecting with autistic communities, self-advocates, and resources. My advice to other Autistic people is to seek out supportive communities, both in-person and online, and find resources that work for you to help build a support system. 

K.P. – Late-in-Life diagnosis

The intense peace I felt a few years ago when I first self-diagnosed as Autistic turned to grief within the same day. I had spent so long thinking I was broken, thinking that I just had to work harder, do better, be better….what if I had just been allowed to be myself? What if I could have spent all of that energy, effort, on joy? Things and people that I love? I grieved for my past self, the pain that she went through, and for the person I thought I was for such a long time. 

I am still working through the waves of grief. It will likely never be finished, but what has helped me a lot is leaning into the intrigue of finally knowing myself. Learning about my interests and needs as if I’m a person I’m meeting for the first time, and I know we’re going to be great friends (I don’t always know that). It’s not easy, and I’m practicing patience and awareness but every realization is a step forward. I would recommend to anyone going through a similar experience that you recognize it will still take time and energy, but you are the best person worth knowing. 

Sam Bull – Grief Around the Loss of Support and Understanding Due to a Late-in-Life Diagnosis

I spent so long feeling like there was something wrong with me—almost 17 years. Even after my diagnosis, I felt like I had missed out on so much. Instead of the supports I needed, I had doctors and teachers blaming me for being “difficult” or “a burden on my family,” even going as far as to encourage suicide. My adolescence was filled with psych wards and hospitals instead of learning and adventuring. I didn’t realize I was grieving this until a decade later. Instead of a clear feeling, my grief showed up as numb indifference—I struggled to take care of myself or do what I wanted, but I couldn’t explain why. It just felt like I wasn’t here, like my soul was somewhere else. I would later learn this is called alexithymia, and it’s common for Autistic people.  

Sometimes the grief catches up with me all at once, and I start crying or having a meltdown out of seemingly nowhere. But these days, I’m trying to look ahead. I can’t go back in time, but I can plan my future. I set aside time to “catch up” on the things I missed in my youth. I’m taking courses on ecosystems and pollination, even though I’m not in school anymore. I’ve bought the plushies I denied myself as a teenager because I was trying so hard to be the masked version of myself that teachers and adults expected. I’m planning sleepovers, birthday parties, and adventures—things people might think only kids and teenagers should be up to. I’m teaching myself to stim again, just like child-me enjoyed. Every step makes me feel like I’m finally living life on my own terms.  

Also, fun fact: you can still get your friends together to play Grounders when you’re 29. There’s no rule that says you can’t!