This comprehensive toolkit explores ways that Autistic people may navigate through experiences of death or other lived experiences that cause deeply felt personal loss. Its purpose is to increase understanding and support for Autistic people.
This resource is broken into three parts of a series on Grief. Please click on the table of contents below to view all parts of the series:
Part 1: The Autistic Experience of Grief:
- The unique ways Autistic people may process grief
- Experiences that may trigger the grief process
- Physical, Emotional, and Behavioural Signs of Autistic Grief
Part 2: Supporting Your Autistic Loved One or Friend Experiencing Grief:
- Tips for families and friends wanting to support Autistic people through grief and loss
- Practical advice to help Autistic children prepare for and cope with death
Part 3: Strategies to Help Autistic People Move Forward with Their Grief:
- Self-help strategies for Autistic people navigating grief
- How to recognize when professional help may be needed
- What to look for to find a neurodiversity-affirming therapist
- Loss and Grief Resources for further reading
Whether you’re Autistic or supporting someone who is, this resource offers a helpful and compassionate approach to understanding and navigating Autistic grief and loss.
At AIDE Canada, we prioritize sharing Autistic voices and lived experiences. To that end, we reached out to identify and contract Autistic people willing to share their grief experiences and perspectives. We asked those lived-experience contributors to describe how their specific loss and subsequent grief was experienced. You can read all the submissions here. Alternatively, you can choose the grief topic in which you are most interested, to read what our neurodivergent writers shared about it, how they coped, and what advice have they offer. Just click on the drop-down menu within various sections of the toolkit to do so.
Part 1: The Autistic Experience of Grief
Why this Toolkit Exists: Naming Autistic Grief:
Exploring What It Is and How It is Experienced by Autistic People
Experiences of grief and loss are often overlooked when supporting Autistic people, even though these experiences can profoundly impact their emotional and behavioural responses and well-being. With the death of a loved one, a pet, or a divorce, grief may be an anticipated response; however, it is essential to know that Autistic grief is not limited to these experiences. Any loss of something cherished or valued can trigger the grief process for an Autistic person.
Many people don’t realize that Autistic grief can stem from life changes others might not recognize as significant, or that grieving may begin long after the loss occurred. The loss of a supportive teacher or a beloved possession, being fired from a job, or losing access to your deep interests, as examples, can be deeply felt, and trigger the grieving process. Without this understanding, the intense feelings or coping behaviours Autistic people may experience as a result of their grief can be mischaracterized in negative ways, attributed to unrelated things, or even dismissed, leaving the person without the understanding and support they would benefit from receiving.
Being misunderstood is a common experience for Autistic people. By providing information on how grief and loss may be expressed by Autistic people, people may be more compassionate and effective in their approaches as they attempt to help. Importantly, knowledge about this topic can prevent Autistic people from being editorialized as lacking empathy, or being overly dramatic, lazy, disorganized, and/or unmotivated. These kinds of negative assumptions impact the well-being and self-esteem of Autistic people, and while they are never appropriate, they are especially unwelcome when a person is struggling with the weight of grief.
One goal of this toolkit is to increase awareness of this topic and shift understanding of behaviours and emotional responses related to Autistic grief within social and professional networks. Of course, the main goal is to inform Autistic people that Autistic grief is valid, as we highlight this topic and give ideas for coping with grief.
With so many late-in-life Autistic diagnoses, there are generations of Autistic adults still coming to terms with all it can mean to them to be Autistic. When they discover that the losses in their life may have manifested as grieving, they may understand that their reactions, behaviours, and any challenges with daily functioning could be connected to grieving many life experiences. The hope is that this knowledge will encourage self-compassion along with a growing understanding of oneself.
Of course, while grief may follow from many Autistic life experiences, bereavement—loss by death of a loved one—is something many parents of Autistic children and teens struggle to know how to support. While there is not a large body of research on the topic, there is advice that takes into account Autistic ways of processing information. This toolkit will share some ideas to help parents who may want to provide their child with the best possible support through a challenging experience.
An important reason for providing information related to Autistic grief and loss is to describe tangible ways that people can support Autistic people experiencing grief. You will find that information in this toolkit. We hope it will leave loved ones and others feeling less helpless and more empowered when offering help to a grieving Autistic person.
Additionally, Autistic people looking to find ways to help themselves during periods of grief and loss will find some ideas that may help, including signs that it may be time to look for professional help to move past the despair and inertia that the experience can cause.
You can utilize this toolkit by reading the entire document or browsing selected topics. Whichever way you consume the content, we hope that it helps you to navigate your own Autistic grief experiences, or to be a strong ally to the Autistic people in your life and community.
Section A: Understanding Autistic Experiences of Grief and Loss
Grief is a deeply personal journey, but for Autistic people, it can unfold in ways that differ significantly from non-Autistic experiences. By learning about these differences, grieving Autistic people will be better equipped to help themselves cope with grief and loss. For non-Autistic people who love or care about an Autistic person, understanding these unique experiences can help them provide better support. This is true whether the grief is triggered by the death of a loved one, the end of a meaningful connection, changes in routines or environments, or some other deeply impactful event.
As we look into this topic, keep in mind that each Autistic person will experience grief in their own way. Some may grieve in the same ways as their non-Autistic friends and family members, and still others may have experiences not reflected in this toolkit. Knowledge of how Autistic people grieve is still developing and research has been limited.
Recognizing the Unique Nature of Autistic Grief
In the past, grief was often thought to follow predictable stages, including denial, anger, bargaining, depression, and acceptance. However, it is not a step-to-step progression through a process. For Autistic people, grief does not follow a linear progression. Instead, it may be experienced more intensely, be triggered by a wider array of life events, or last longer than non-Autistic people might expect.
Life changes that may seem minor to non-Autistic people—such as a favourite teacher leaving or losing a treasured object—can cause profound grief for Autistic people. These reactions are not overreactions or dramatizations but reflect unique emotional connections and a deep reliance on stability and familiarity.
Emotional Processing and Delayed Reactions
Autistic people may process emotions differently, which can impact their grief responses. A common phenomenon is delayed emotional reactions. For example, an Autistic person may appear unaffected immediately after a loss but express intense grief weeks or months later.
This delay can make their pain less visible to others, who may unfairly perceive them as lacking empathy if they don’t cry at a funeral or appear outwardly sad. However, the full weight of the loss may strike them later, when they fully process its permanence. Delayed grief is discussed further in this section.
Sensory and social factors also influence how Autistic people process grief and may be perceived by others. Overwhelming environments, such as noisy funerals or crowded wakes, can heighten stress and hinder emotional expression. For sensory ‘seekers’ who must move to feel calm the expectation to sit still can be equally distressing.
Additionally, some Autistic people may feel the emotions of others and be impacted by the grief of others, which can further overwhelm them during these challenging moments. This experience is called emotional synesthesia, which is described as feeling other people’s emotions.
The Importance of Routine and Stability in Grieving
Routine and predictability provide a vital sense of stability for many Autistic people. When a loss disrupts these routines, the grieving process may be intensified.
For instance, the death of a parent not only causes emotional pain but can also disrupt long-standing routines and structures. Similarly, moving homes or changing schools can lead to grief as familiar routines and relationships are left behind. Responses to these transitions are often misinterpreted as wilful disobedience or laziness when, in fact, they are manifestations of grief. Always keep in mind that expressions of grief may not begin until long after the situation has occurred.
Barriers to Expressing Grief
Communicating grief is particularly challenging for many Autistic people. Some may experience situational mutism, where the emotional weight of the loss temporarily renders them unable to speak. This could occur at a funeral, during a wake, or even in casual conversations when asked how they are coping with a loss.
Additionally, both speaking and non-speaking Autistic people may struggle with alexithymia, which makes it difficult to identify or articulate emotions. Non-speaking Autistic people may rely on alternative methods, such as spelling, writing, drawing or typing, to express their feelings. However, they may not always have the opportunity to communicate in this way, or be understood when they do so, especially if others are unaware of or unfamiliar with their methods.
Society often misinterprets these challenges. Autistic people who do not cry at a funeral or participate in conventional mourning rituals may be judged as indifferent. In reality, they are often processing their grief internally or struggling to navigate the societal expectations around death and loss.
The Long and Deep Nature of Autistic Grief
Autistic people often experience grief more deeply and for longer periods than non-Autistic people. This depth reflects their strong emotional connections and reliance on predictable routines, and predictable access to people and things. Without understanding or support of this experience, prolonged grief may lead to feelings of isolation or invalidation.
For instance, an Autistic person grieving the loss of a treasured item or missed promotion might face dismissive attitudes from others, such as being told to “just get over it.” Symptoms of grief—such as sadness, withdrawal, increased irritability, or strict adherence to routines—can go unrecognized and unsupported.
Acknowledging these differences is essential for offering compassionate and effective support. While grief is a universal human experience, its expression varies widely. For Autistic people, understanding and acceptance of their unique ways of grieving are crucial for healing.
Delayed Grief: Processing Loss at Their Own Pace
It may take time for an Autistic person to process and understand the implications of a loss. When delayed grief occurs, outward signs of mourning may not be immediate.
For example, a non-Autistic person might feel distraught upon learning of a grandparent's death, while an Autistic person may take weeks or months to fully grasp the reality. Triggers such as anniversaries, family rituals, or sensory memories may initiate the grieving process long after the event itself.
A teenager starting high school may exhibit grief weeks into the term, as they come to terms with the permanent loss of familiar teachers and routines from elementary school. In such cases, it is important for educators and caregivers to avoid mislabelling behaviours such as meltdowns , shutdowns or crying as “bad behaviour.”
Delayed grief does not signify a lack of emotions or empathy. Rather, it is a reflection of the time needed to process and understand a profound personal loss. Autistic people must be allowed to grieve at their own pace without judgment.
Autistic grief may differ from non-Autistic grief in how it is experienced, its intensity, duration, and triggers, but it is no less valid or deeply felt. By recognizing and respecting these differences, we can provide the understanding and support necessary for Autistic people to navigate their grieving journey.
Autistic Meltdown
A meltdown is a loss of control triggered by the environment and can occur when a person’s sensory, social, or cognitive capacity is maxed out. Meltdown responses are externalized, meaning they can be seen and heard by others with behaviours such as crying, yelling, or physical actions.
Autistic Shutdown
A shutdown happens when a person is overwhelmed by sensory, social, or cognitive demands. It is sometimes described as an ‘internalized meltdown’. It manifests in ways opposite of a meltdown: rather than exploding outward, the person literally shuts down. They will become silent, unable to communicate, often become still or inert, and are unable to take in what is happening around them. They may need guided assistance to move.
Section B: Events That May Trigger Grief in Autistic People
Grief is a natural response to loss, but for Autistic people, the triggers can be broader and may include situations that non-Autistic people might not typically associate with grief. While traditional losses such as the death of a loved one or the end of a relationship are universally recognized, Autistic people may also grieve events or changes that others might not view as significant. Understanding these grief triggers is essential for providing meaningful support to Autistic people. Let’s look at the types of losses that may trigger grief for an Autistic person.
Traditional Losses
Like anyone, Autistic people may grieve deeply following the death of a loved one, the loss of a beloved pet, or the end of a long-term partnership or marriage. Death of a parent can be especially devastating. For many Autistic people, one or both parents or their guardian may be a lifelong source of unconditional love, emotional connection, financial help, and support with household routines and life management. This support continues into adulthood, and may include things like regular assistance with life skills and adaptive skills.
Many Autistic adults appreciate and rely on this support while making their own choices about how and where they live—whether that’s with their parent(s) or independently. The death of such an important person would no doubt be a painful and disorienting loss. The Autistic person is left grieving not only the loss of a loved one, but also the predictability of the daily routines and connections shared with that person.
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.”
Autistic people often forge strong bonds with their pets as well, with many describing their emotional support animal as their friend. These animals—dogs, cats, rabbits and others—provide unconditional acceptance, sensory comfort, and companionship that many Autistic people struggle to establish living as a marginalized community among the majority of non-Autistics. At age 19, the adult son of the author of this toolkit lost his emotional support dog named Brain. He says of that experience: “It was traumatizing. Brain was my anchor, and I needed him there to get through the experience…but he wasn’t there anymore… I felt adrift. It has taken me years to come to terms with the loss.”
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.
Grief from the Loss of Friendship
Autistic people will often experience the end of a friendship as a devastating loss. Autistic people may have a number of acquaintances but a very small number of people with whom they trust and connect and share their time and interests. Some have only one or two such friends, and to have a friendship end can be a huge loss. It is not uncommon for Autistic people to struggle to resolve conflicts when they arise, or to be able to accept that a friend has a diametrically opposing view on an important topic. The Autistic person may end the friendship because they cannot reconcile the disagreement to the trust and connection they have with the person.
Additionally, they may ruminate over the loss for many years if they feel the friend was wrong in the stance they took or the action they took to cause the disagreement. This rumination can cause disrupted sleep and anxiety as they try, without success, to make sense of the loss. If the Autistic person said or did something to cause the rift and loss, they may spend years berating themselves for saying or doing something perceived as inappropriate enough to end a friendship. They may continue to grieve the loss of the friendship, the pain of being misunderstood in their intentions, and their inability to attempt to resolve the conflict.
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.
The Grief of Losing a Romantic Partner
Similar to that described above, there challenges are experienced with the end of a love relationship. The Autistic person may feel misunderstood and mischaracterized in the relationship and feel that ending the union was deeply unfair. Thus, they not only mourn the loss of their love, but the injustice they feel that caused the end of the relationship. They will also have to cope with the loss of routines and structure they established as a couple. In this regard, the grieving process can be a lengthy one as the person struggles with negative self-talk, a sense of injustice, and the loss of the physical and emotional bond of their romantic partner. Sometimes, the breakdown of someone else’s romantic relationship can also trigger grief, such as children who suffer when parents’ divorce.
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.
Structure and routine, change and transition can be difficult for some Autistic people. Certain life events can suddenly thrust the comfort and predictability of daily routines and structures aside. Divorce is one such event that can be particularly challenging for Autistic people experiencing their own divorce, or Autistic children experiencing their parents’ divorce.
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.
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.
Non-Traditional Grief Triggers
For the purposes of this toolkit, non-traditional grief refers to any life experiences of loss that are so painful for the Autistic person that it can cause them to grieve. It is not limited to the examples from our lived-experience contributors below, or the following: someone may grieve if they’ve lost a souvenir from a family trip, were declined entry into a university program, or if they’ve been unsuccessful obtaining employment.
Autistic people can experience grief that extends far beyond the traditional triggers of the experience. When a favourite item is broken or lost, a move occurs, a much-respected boss is promoted out of the office, or routines and structure are ended, profound sadness can set in. For instance, moving disrupts physical spaces but also means leaving behind familiar routines, sensory comforts, and established community ties.
Similarly, the departure of a trusted teacher, support staff, or mentor can lead to feelings of loss and instability. Leaving a job, being unable to find employment, or being fired can all trigger feelings of profound grief.
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.
Life transitions, such as the end of the school year or completing a post-secondary program, can also evoke grief. It is the loss associated with the end of these experiences that causes the grief. Autistic university graduates may mourn the camaraderie of their cohorts. These moments often involve saying goodbye to structured environments, cherished peers, and predictable routines, creating a sense of disconnection or uncertainty. Even unmet expectations—like not receiving a dream job offer, being rejected after applying to a desired post-graduate program, or missing out on a hoped-for birthday gift—can trigger grief, intensifying feelings of being undervalued or unseen.
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.
Cumulative Grief
One of the most profound aspects of Autistic grief is cumulative grief—an ongoing sense of loss that comes from societal barriers that Autistic people face including repeated experiences of exclusion and being misunderstood. It is important to note that not all Autistic people experience this daunting scenario, but many do. Being ‘othered’ often starts in school due to feeling ignored, rejected, teased or physically bullied; constantly being judged by neurotypical standards of curriculum delivery; social intentions being misunderstood because Autistic ways of interacting are unique from those of non-Autistics; and having to learn in sensory environments that can be too much to bear. This early experience connects to what is known as the double empathy problem—the idea that Autistic and non-Autistic people often misunderstand each other because we experience and interpret the world differently. However, the responsibility to understand and adapt is almost always placed on the Autistic person. We are expected to learn non-Autistic expectations, communication styles, and ways of thinking, while non-Autistic people are rarely expected to learn about Autistic ways of being.
This feeling of not fitting in often continues into the teen and adult years. It can stem from not receiving party invitations, being rejected when trying to establish friendships or when trying to find romantic love. It also includes frequently being turned down for jobs or difficulty finding or maintaining employment that matches the Autistic person’s education and ability. Autistic people are often left without clear feedback when they are turned down for a job, a social invitation, or another opportunity – leaving them to wonder what went wrong and why. Many Autistic people are chronically unemployed or underemployed and struggle with financial hardship. Over the years, if a person experiences repeated rejection is unable to progress in their career or have a stable, committed relationship, cumulative grief can result. This kind of grief occurs not just due to the opportunities that were lost, but may also reflect what feels far out of reach: a sense of being valued, experiencing love and relationships, achieving financial stability, and seeing lifelong goals realized. Autistic people may endure the deep emotional pain of grief as these kinds of experiences continue to occur. The sense of loss can leave a void along with the aching sadness, anguish, or longing that can accompany 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.
Grief over Late-in-Life Autistic Identification
Awareness of the existence of speaking Autistics without cognitive delays is a relatively new phenomenon. Many family doctors received little or no training on the various ways that the Autistic neurology could be expressed, particularly in those who identify as female (it was thought that only boys could be Autistic!).
As a result, countless adults have gone through life misunderstood, mischaracterized, often misdiagnosed with a variety of psychiatric illnesses and personality disorders—only to find out in their 30s, 40s, 50s, 60s, 70s or 80s – that they are Autistic.
While the diagnosis can help late-diagnosed Autistics understand why they always felt out of sync with those around them, or why work and relationships seemed to be easier for everyone else, the identification often triggers a grieving process. Many people grieve the loss of support and understanding that could have/would have benefited them, and accommodations that would have made school manageable and perhaps allowed them to pursue their dream career.
It is not the knowledge that they are Autistic that causes grieving (many initiated and advocated for the assessment process on their own) because knowing they are Autistic has given answers for their life choices, a sense of community, and connections with those who share their experiences.
Rather, they may grieve how they were parented—reprimanded and rushed along and told to act ‘normal’ rather than being given consideration for slower processing speed, motor challenges, or sensory needs. Many ruminate on how life could have been if they’d only understood themselves better., and if parents or guardians made a greater effort to learn about their way of experiencing the world. They may grieve how hard they were on themselves because internalized ableism made them believe they were inferior to others when they couldn’t keep up.
Internalized ableism happens when Autistic people absorb negative messages from society about autism and start believing there is something wrong with being Autistic. It can also make the Autistic person resent, hate, and avoid any association with the Autistic community. They may grieve the trauma they suffered from bullying, from being punished for coping stims they had to do just to get by, and they may grieve friendships and love lost because they could not resolve conflict and just didn’t know why.
While all who love and support the Autistic adult with a new Autistic identification should respect and validate the grief that is expressed, these late diagnoses come with many benefits as well. They can validate the person’s long-held considerations of difficulty with social functioning and can bring an understanding of past difficult situations.
A diagnosis can mean the person stops seeing their struggles as a personal failure or weakness where they feel shame and engage in negative self-talk. Understanding they are Autistic can begin the journey of self-acceptance and understanding, and often helps them to build strength-based lives that align well with their strengths and needs.
Those who receive a late diagnosis have a right to feel they missed out on important support and understanding that could have made a difference in their life trajectory. With grace, those around them will validate their concerns and listen without judgement as they move through this process and onto reclaiming their lives.
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!
Validating the grief experience is critical, from traditional or non-traditional losses, late diagnosis, or from societal discrimination against marginalized communities. Such validation can help Autistic people, family, friends and community members feel seen, heard and understood. Whether an Autistic person has suffered the death of a loved one, is grieving after moving to a new neighbourhood, or is struggling with hurdles imposed by society, Autistic grief deserves to be acknowledged and supported with compassion.
Recognizing that there are a number of different triggers for Autistic grief is a positive step toward this goal. By increasing our understanding of what can cause grief, we can learn to validate and respect this Autistic experience.
Section C: Physical, Emotional, and Behavioural Signs of Autistic Grief*
*This is not a comprehensive list, and not all Autistic people will have these experiences.
Grief is a deeply personal experience that can be difficult for non-Autistic people to recognize in Autistic people, especially since it is often expressed in ways that differ from societal expectations. Whether you are an Autistic person experiencing grief yourself or a non-Autistic person supporting a loved one, understanding the signs of Autistic grief can help foster compassion and provide meaningful support.
Recognizing Grief in Autistic People
Autistic grief can be expressed in many ways, including through emotional, physical, or behavioural changes. Emotional expressions may include increased irritability, more frequent meltdowns, or prolonged shutdowns. Autistic people may also struggle with emotional regulation, becoming more reactive to situations or withdrawing entirely from interaction. They might show heightened anxiety or become hyper-focused on specific routines, tasks, or objects as a way to self-soothe.
As a general rule, grief tends to amplify pre-existing struggles. For example, if a person already has difficulty managing emotions, those challenges may intensify during grief. Autistic grief and trauma therapist Amy MacFarlane describes grief as an “amplifier,” where behavioural responses to sensory experiences, social expectations, and everyday functioning may become more pronounced and dramatic.
Emotional Reactions
Autistic people may display intense emotional responses, such as crying or prolonged sobbing that emerges suddenly and seemingly without cause. While this might be expected immediately after a loss, it can also occur unexpectedly—sitting in a lecture hall, at the dinner table, or while waiting in line at a grocery store—when they are reminded of what they have lost. This emotional outpouring is often a sign that the person has realized the magnitude of their loss and is actively grieving.
At funerals, Autistic people may express grief in ways that are different from non-Autistic expectations. They may not cry or may even greet others cheerfully, leading some to mischaracterize them as lacking empathy. In reality, the Autistic person may take more time to process and fully understand the depth of their loss. They may also be overwhelmed by the unfamiliar social and sensory demands that accompany such events, or be unaware of, or unable to provide, the social expectation demanded.
Autistic people may also struggle to express their emotions due to alexithymia (having difficulty describing, identifying or noticing their emotions). They may not know how to describe their grief, or they may lack the words to convey the depth of their feelings. Combined with a lack of visible emotional responses, this can lead others to assume they are unaffected by the loss.
Non-speaking Autistic people may express their emotions through changes in body language or stimming. This might include increased rocking, fidgeting, or other repetitive movements. They might also withdraw socially, immerse themselves in a special interest, or choose solitude over activities they normally enjoy. It’s important to avoid pathologizing these behaviours—they are valid and meaningful expressions of emotional pain that deserve understanding and respect.
In cases of grief following a death, Autistic people may struggle with the unexpected social pressures of funeral rituals. The need to navigate condolences, accept unsolicited hugs, and engage in small talk may be exhausting or anxiety-provoking. Others may misinterpret neutral facial expressions or blunt responses as signs of anger or disrespect. Guests might judge an Autistic person’s lack of hushed tones or discomfort with mingling before a service begins.
These responses are not an indication of indifference, a lack of respect for the deceased, or diminished emotional pain. Instead, they reflect a disconnect between non-Autistic cultural norms and Autistic norms. Autistic people often feel deeply for the people and things that are important to them but are judged not by the depth of their feelings but by whether they act in ways that others expect.
Thinking Processes
Grief often leaves Autistic people caught in cycles of rumination, replaying past interactions, and overanalyzing perceived mistakes. The abstract nature of grief caused by death or divorce, which often involves more emotion than logic, can be particularly challenging. They may repeatedly ruminate or be unable to stop thinking about the situation, wishing for a different outcome or a resolution that will bring peace of mind.
This can in many scenarios such as when they’ve ended a friendship or quit a job over a disagreement. It may be difficult for some Autistic people to address and resolve conflict or differences of opinion Being unfairly judged by a best friend may end the relationship. Finding out their manager has extreme political views may prompt them to leave their employment. They may find themselves ruminating on the unfairness of the situation and grieving the loss months or even years later.
Reduced or Increased Time Spent with Areas of Interest
An Autistic person who is grieving a loss may change how they engage with activities they love. Grief can deepen focus on areas of special interest. For example, a gamer might spend all their free time playing video games—avoiding emotional pain by immersing themselves in their hobby. Similarly, someone passionate about politics might spend hours reading or watching related content as they seek distraction from their grief.
This may cause conflict in a household shared with other family members if the increased intensity means they are not managing to attend to their household duties, self-care, or attend school or work. This is where becoming informed about the nature of grief in the Autistic culture can be help. An informed parent, sibling, roommate or friend can refrain from judgment and be available to listen, talk, and spend time with the person.
While some Autistic people may notice no change in their time spent on interests, some may find they have lost any inclination to spend time with them. It may seem that they have no interest in anything. This should alert supportive people around the person to the possibility that their friend or family member may be experiencing grief or loss.
Supportive people should remember that Autistic grief may not always show up in ways non-Autistic people expect. An Autistic person might mourn a pet who passed away a year ago, feel deep frustration over a broken gaming system that once brought comfort, or experience real sadness about a car that has needed repairs for months. Grief can be connected to relationships, routines, special interests, or familiar objects—and every expression of it deserves understanding and respect. The length of time since the loss is less important than whether or not the person has processed the impact.
Consider this: An Autistic person perhaps cannot afford to repair or replace their much-loved gaming system. Even though weeks or months have passed, the Autistic person has been grieving the loss. Their thinking processing may now urge them to stay away from much-loved gaming activities because they can be taken away from them in an instant. They may make the choice to avoid what they love to do in order to avoid the grief of losing it. The person may be experiencing signs of depression, and for that professional help is advised.
Some Autistic people may attempt to make sense of experiencing the death of a loved one by immersing themselves in research on death, dying, and loss. They may take comfort in finding resources including books and academic papers on the topic. It may give them a way to feel a semblance of control over a chaotic emotional experience. Many Autistic people count researching new topics to be a high-interest activity.
Social Withdrawal and Routines
Grief can change how Autistic people engage with the world. They might withdraw from social opportunities, lose interest in previously enjoyable activities, or struggle to complete everyday tasks. This should not be mistaken for indifference or a lack of care. Instead, it is a valid way of processing and coping with loss.
Changes to routines are also common. Some people may abandon routines they’ve long adhered to. For example, they may give up their weekly guitar lessons, or abandon their daily cleaning routine. Others might adhere more to routines, finding comfort in the predictability and structure they provide during a time of difficulty.
Physical Changes
Grief often takes a toll on the body. It is important to watch for physical changes that may signal a need for professional support during grief. A general guideline is to consider what is typical for the Autistic person and notice if there has been a significant change. For example, if someone who usually sleeps six to seven hours a night is now sleeping twelve hours, or if there are noticeable changes in eating habits or weight, these may be signs that additional support is needed. These shifts can be part of the grieving process. It is essential to include the Autistic person in any discussions about seeking medical attention. Unless the person is a child, their autonomy and right to make decisions about their own care must be fully respected.
Loss and the Autistic Child
Grief in Autistic children often shows up in observable behaviours at home and school. It’s important to remember that the term “behaviours” does not imply anything inappropriate or naughty—these are simply changes that others may notice.
For example, a child who has moved to a new school district may grieve the loss of familiar peers, a close friend, and a much-loved educational assistant. They might struggle to get ready in the morning, forget how to dress themselves, or twirl and chew their hair in class. A teacher might observe them sitting alone at lunch and recess or avoiding participation in class discussions. At home, they may withdraw from family members, spend hours arranging and rearranging their toys, or be unable to engage in schoolwork.
These are not signs of bad behaviour but signals of a child processing profound loss. Validation of their feelings, coupled with patience, kindness, and compassion, can help them recover. Parents should not assume that children are so resilient that such losses will have no lasting impact. Autistic children may carry the emotional weight of these experiences for a lifetime.
Autistic Masking and Grief
Masking is a way that Autistic people may consciously or unconsciously adjust, hide, or suppress their natural communication styles, movements, and ways of interacting to meet non-Autistic expectations. This can include mimicking non-Autistic social behaviors, minimizing stimming, or pretending to understand when communication is unclear.
While masking can sometimes help a person navigate certain situations, masking may come at a high personal cost, including emotional exhaustion, identity loss, and mental health challenges. Masking is not a weakness or failure; it is a response to living in a society that does not yet fully accept or value Autistic ways of being. How is it related to grief?
Many Autistic people mask their grief, especially in environments where showing emotions feels unsafe or is stigmatized. Masking might involve suppressing outward expressions of sadness or pretending to be unaffected, often to meet societal expectations or avoid judgment. Comments like, “It’s been a year; you should be over it by now,” can pressure someone into hiding their grief.
Autistic people who internalize ableism (in this context, accepting societal biases that devalue Autistic traits and consider those without any physical or neurological difference to be superior) may also mask their grief in an effort to appear neurotypical. They may fear that displaying their emotions will set them apart.
Masked grief can be difficult to recognize. A person who appears to be coping outwardly may show increased exhaustion, irritability, or sudden emotional outbursts in private. They might use humour to deflect or rely heavily on routines and special interests to avoid confronting their suppressed feelings in the company of others.
Creating an environment of unconditional support can help reduce the need to mask grief. Providing a space free of judgement, where people feel safe to be authentic, allows them to process loss in their own way and on their own timeline. Professional help can also assist Autistic people in unmasking.
Is It Grief, Burnout, or Depression?
When an Autistic person shows sudden changes in behaviour, it is important to pause and figure out what’s really going on. Are they experiencing Autistic burnout, depression, or grief?
Autistic burnout is a deep exhaustion — physical, mental, and emotional — that builds up over time. It is caused by long-term stress, constant masking, sensory overload, and not having enough time or support to recover. Autistic burnout can look like complete exhaustion that doesn’t get better with rest; struggling with basic tasks like showering, eating, or talking; or increased sensory overwhelm and emotional shutdowns.
Depression, on the other hand, is a mental health condition that brings deep sadness, hopelessness, and a loss of interest in daily life. It often develops from a mix of brain chemistry, painful experiences, and emotional struggles that don’t get easier over time. Depression can look like constant sadness or emotional flatness; pulling away from activities, hobbies, or people with whom one usually enjoys being with; or feeling stuck, hopeless, or numb for long periods.
Grief is different. It’s a natural response to loss and it can cause sadness, anger, numbness, and exhaustion. In Autistic people, grief can intensify sensory experiences, deepen the need to spend time in areas of strong interest, and magnify struggles that were already there — like sleep problems or eating concerns.
There are so many similarities between these three experiences that it is essential to really know the person to understand why they may be struggling. What sorts of behaviours and routines are usual for them and what has changed? Ultimately, it may be a professional who can determine the cause of any worrisome behaviour changes.
When an Autistic person has recently experienced a traditional or non-traditional loss, consider their behaviours within the context of grief and provide support accordingly. We discuss signs that professional help may be beneficial in Part III of this series. If you would like to explore resources related to Autistic Grief, those are also available in Part III.
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