Supporting Your Autistic Loved One or Friend Experiencing Grief

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:

1. The unique ways Autistic people may process grief
2. Experiences that may trigger the grief process
3. Physical, Emotional, and Behavioural Signs of Autistic Grief

Part 2: Supporting Your Autistic Loved One or Friend Experiencing Grief:

1. Tips for families and friends wanting to support Autistic people through grief and loss
2. Practical advice to help Autistic children prepare for and cope with death

Part 3: Strategies to Help Autistic People Move Forward with Their Grief:

1. Self-help strategies for Autistic people navigating grief
2. How to recognize when professional help may be needed
3. What to look for to find a neurodiversity-affirming therapist
4. 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 2: Supporting Your Autistic Loved One or Friend Experiencing Grief

Section A: How Friends and Family Can Support an Autistic Person

Experiencing Grief or Loss

Whether it’s the death of a loved one, the loss of a job, a lost or broken treasured possession, or a discontinued favourite food item, the Autistic experience of grief and loss can be both wide-ranging and overwhelming. Sensory sensitivities, communication differences, and routines disrupted by grief can make the process more difficult.

While grief and loss are difficult for the Autistic person, friends, family, and even employers may lack confidence in offering support. This section is designed to help everyone to feel better equipped to support the Autistic person navigating loss. Fortunately, there are many tangible ways you can help. What follows are ideas you can consider when your Autistic friend, family member or colleague is navigating grief and loss.

Provide Practical Support

One of the most effective ways to help is by offering practical support. Everyday tasks can feel impossible during periods of grief, so stepping in with tangible assistance can make a significant difference. Preparing meals or dropping off groceries can relieve some of their burden, while helping with household chores like cleaning or doing laundry can create a more comfortable and calming space. Assisting with errands, such as taking them to appointments or mailing or picking up packages, may also be appreciated.

When offering help, be specific. Don’t ask broad, open-ended questions like, “What do you need?” as this will often result in a response like, “Nothing” or ”Don’t know” because Autistic people generally do not like to ask for help or may be overwhelmed by the offer and unable to speak in this situation. A direct question may work better. Try: “I’m free to hang out with you for a couple of hours after work every Tuesday. Together we can tidy your apartment and get the laundry done. I’d love to spend that time with you. Can we do that?” Be patient while waiting for a response.

If your act of service is providing food, text the person to let them know ahead of time that you have food to drop off. It is respectful of the Autistic experience to make sure the person is expecting you. Autistic people commonly like to know what to expect and prefer to be prepared for it. Be mindful of any food restrictions, as Autistic people are at risk for a restrictive eating disorder called ‘avoidant/restrictive food intake disorder’ (ARFID).

Respect Their Way of Grieving

It’s important to respect the Autistic person’s unique way of grieving. Autistic people may process grief differently than neurotypical people, and their ways of expressing or managing emotions might not align with traditional expectations. Refrain from making any negative comments about the way they navigate this experience.

It is common for Autistic people to have difficulty identifying the intense new emotions they may be feeling and to not show outward signs of the depth of their sadness or overwhelm. This is often because Autistic people do not commonly communicate what they are feeling using non-verbal skills such as facial expressions, body language, or tone of voice. Other times, it may be because they are overwhelmed, and anxiety can trigger situational mutism, where they are unable to communicate with spoken words. Still, offer to be available at any time to talk or text, but avoid pressuring them to talk about their grief if they don’t want to.

They may prefer to spend time alone as they come to terms with their loss. Spending time alone in silence might be one of their coping mechanisms. Consider buying them a journal to write out their feelings, gifting them a sketchbook and coloured pencils, or giving them colourful modelling clay so they can express themselves through art.

It is essential for you to avoid making negative comments regarding the reason the person is grieving. Instead, validate the experience with comments like:

• “I’m so sorry. It must be so hard for you thinking of the support you missed throughout your life,” if they are grieving a late-in-life diagnosis.
• “I’m sorry you didn’t get the job. I would understand if the grief is overwhelming. You deserved that job, and this is a deep loss,” if they didn’t get a well-deserved and much-hoped-for promotion.
• “I am sorry you are feeling so deeply sad. I can understand why you are grieving. Ending a 20-year friendship is hard.”

Losses like these can be felt as deeply by an Autistic person as by a non-Autistic person.

Be Considerate of Sensory Requirements

Grief can also cause heightened sensory sensitivities, so you can show support by offering sensory accommodations as needed. It is important to do this without any comments that might make the person feel like they are causing too much work or are a burden to those around them. Everyone’s sensory considerations are different and important, and can be more or less pronounced depending on their emotional state and general well-being. Expect that a grieving friend or family member will be more sensitive to things they don’t usually tolerate well.

For example, keep your lighting dim when they visit you, and respect their choice of lighting when you go to their home. When you are bringing over a meal, take something familiar that you know they enjoy. If you are considering giving them a gift, perhaps find a fidget item, a gift card for calming music, or Loop earbuds that dull ambient noise while allowing you to hear your conversation partner. Offer to take them out to their favourite restaurant.

If you are an employer, designate a quiet, calming space with comfortable seating, dim lighting, nature sounds, and warm soft blankets. If space is not available, make it clear that the person is free to spend time in their car if they need time alone.

In general, eliminate loud noises, people talking over each other, and bright lighting if you are unsure of their sensory triggers. Keep interactions calm and quiet. When you are looking to spend time together, a quiet walk in nature may help them to self-regulate and feel calm. When making plans, opt for low-stimulation environments, like a quiet coffee shop (many are quite noisy!), a bookstore, or time spent in their home. The last option is likely to already meet their sensory needs.

If you are supporting a family member, ask them how you can best accommodate their sensory profile. Be prepared for them to decline your well-intentioned offer. Many Autistic people are conditioned to suppress their needs in deference to others. They may have grown up being told they were overly dramatic or attention-seeking when discussing sensory concerns. Society has reinforced this, encouraging Autistics to mask or hide their needs to avoid rejection. Be patient and be available so they know that you are genuine in your care and willingness to try to be supportive.

Offer to Help Restore Routines

For many Autistic people, continuing to follow established routines can be comforting. This is connected to the Autistic intolerance of uncertainty and a strong preference for predictability. If their regular schedule has been thrown into disarray by grief, helping them to get back on track can be a great support. Can you take them to their weekly guitar lessons or go to the gym with them? Suggest low-pressure outings, like a casual walk around the neighbourhood, to gently reintroduce social interaction. They may walk and talk, or they may walk in silence with a good friend or family member.

If they are completely off schedule because of the loss—losing a job, divorce, or moving to a new area can contribute to this—they may be having a hard time establishing a regular routine and a sense of order in their life. With their permission, help them create a schedule that works for them.

Listen Without Judgement and Validate Their Feelings

Finally, one of the most powerful ways anyone can support an Autistic person through grief is to listen without judgement. Your act of being present, even when they want to sit in silence or get some chores done rather than talk, reminds the Autistic person that they matter and are not alone.

Avoid unhelpful phrases like:

• “I know how you feel,”
• “It’s all for the best,”
• “This was meant to happen.”

Instead, validate their feelings with comments such as:

• “That sounds really hard,”
• “I understand why that would be so difficult for you,”
• “It’s perfectly reasonable for you to feel this way.”

Responses like these let them know it’s okay to have strong feelings. It also shows your willingness to be there for them with a non-judgmental attitude and a willingness to help.

Problem-Solve with Them

It is not uncommon for Autistic people to feel stuck when things don’t go as anticipated. If your Autistic family member or friend is grieving because they missed out on admission to their first-choice university or their cell phone has stopped working and they can’t afford to repair it, remain unconditionally supportive and validating. At the same time, you can gently and without pressure introduce the idea of finding solutions together to address the loss and reduce its impact.

For example, if the grief stems from losing the use of their broken phone, start by validating their emotions and giving them space to process. Meanwhile, if you have ideas to help, let them know: “I have a few thoughts that might make this a bit easier. Would you like to hear them?” If they decline, respect their wishes.

If they’re open to hearing suggestions, you might brainstorm ways to raise funds or find a replacement phone together. Perhaps they could sell items on Facebook Marketplace to cover the cost of repairs. You could also reach out to your social circle to see if anyone has a spare phone they’re willing to donate. Another option might be creating a small, private GoFundMe shared with family and friends to explain the situation and seek support. These ideas may spark additional solutions from your friend or family member and inspire hope that this particular loss can be addressed.

If a solution is implemented successfully, it can mean more than just a repaired or replaced phone. It may help your friend or loved one recognize their ability to navigate unexpected challenges. While not all losses can be fixed, and the goal isn’t to erase the grief experience, problem-solving can offer a valuable perspective. It can help refocus the person when grief and inflexible thinking, amplified by anxiety, suggest there’s no way forward.

Spend Time with Them Doing Something They Love to Do

While supporting your friend or loved one with essential tasks has great value, just hanging out and doing what they want to do, is also important. Spend time with them focusing on their areas of great interest or doing things they have always enjoyed. Play a board game. Build an intricate Lego village. Listen and learn about Ancient Rome, horses, or Vikings, as examples. Time passed in this way can remind the Autistic person that there is value in connection, and people who value connecting with them.

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Supporting an Autistic person through grief or loss requires compassion and thoughtful action. They may experience grief from a wide range of losses, including bereavement, disrupted routines, or personal setbacks. Their grieving process can differ, often impacted by sensory sensitivities, difficulty expressing emotions, or anxiety.

Non-Autistic friends, family, and employers can help by offering practical support, such as assisting with daily tasks or being considerate of their sensory needs. Respect their unique way of grieving, whether they seek solitude, creative outlets, or quiet companionship. Validate their emotions without judgment and avoid pressuring them to talk before they are ready. By creating a supportive environment and responding to their needs with understanding, you remind them they are valued and not alone during difficult times. If the person is struggling with their grief for a prolonged period of time and indicates interest in receiving professional help, you can find more information on what kind of therapists may be most helpful, in Part III titled, “Strategies to Help Autistic People Move Forward with Their Grief.”

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Section B: Supporting an Autistic Child Before and After the Death of a Loved One

It is not uncommon for parents of Autistic children to report that they worry about dying while their child is still very young. Of course, many worry about this for their lifetime, as many Autistic people live with their parents well into adulthood, or until their parents can no longer care for them. It’s no wonder parents worry: few, if any, people in the child’s life will understand the unique ways in which the child experiences the sensory world and interacts with others quite like their parents.

Sadly, however, sometimes it does happen that an Autistic child may lose a parent, sibling, grandparent or friend to unexpected death or illness. For the purposes of this section, we will use the example of death by illness so we can include information to help prepare a child for an imminent death. Please note that every Autistic child is different, and the examples and support ideas provided will not suit everyone. As well, you may find the support strategies suggested for the grieving child also relevant when preparing a child for the loss of a much-loved pet. While deep attachments are often made between family pets and Autistic children, it can be particularly devastating for an Autistic child when their service animal or emotional support pet dies.

Please note that this area of supporting a child in the case of the death of their parent is a complex area, and we are only touching upon some brief ideas within this toolkit. If this is an area for which more information is sought, we invite you to seek further detail about support for Autistic child in bereavement. Books can be obtained from the AIDE library at no cost, and we invite you to further explore the AIDE website as well as other resources on this topic. But as noted, below are some preliminary ideas to consider.

Preparing the Child for the Death of a Parent

The three most important aspects of preparing a child for the death of a parent or family member are: using clear, unambiguous language; thinking ahead and planning to prevent unnecessary challenges for the child, and being consistent and available in providing emotional support. Consider the following strategies in a scenario where a father is dying of late-stage pancreatic cancer:

Revealing the Terminal Diagnosis

The task of sharing a terminal diagnosis with a child can be heart-wrenching and very difficult for the parent (or parents if they share the information together). Let the child know you have something very important to talk about and that they can ask any questions they want. Explain that Dad has been very sick with a disease called pancreatic cancer, and doctors have done all they can to make him better, but the sickness cannot be fixed. This means Dad’s body will stop working soon. This is called dying.

Many hospitals and hospices have social workers who can be supportive of this process.

Language About Death and Dying Is Important. Don’t Use Euphemisms

Don’t tell your child they will “lose Dad,” or that the dying parent “will pass away” or “go to sleep.” Instead, use direct language to convey the message suggested in the previous paragraph: “Daddy is very sick, and soon his body will stop working, which means he will die.” Explain that dying means his body will stop working. He will no longer be able to breathe, eat, sleep, move, or talk, and he won’t feel pain anymore. Be clear about the difference between dying and sleep. “When someone dies, they never wake up again, which means they are not alive, and we can’t see them or be with them anymore.”

Answer All Questions Honestly and in an Age-Appropriate Way

*Strategies will vary based on the individual profile of the child. Cognitive approaches will be modified if there is a co-occurring intellectual disability, for example.

Be prepared for some Autistic children to ask the same questions over and over again. Repetitive questions may be a way for the child to fully process what they’ve learned. It may also be a response to the anxiety they are experiencing or a way to connect with you, the other parent or guardian. Whatever the reason, it is helpful to give your undivided attention, patience, and consistent responses. They are likely to have questions such as:

• When I get sick, will I die?
• Does it hurt to die?
• What happens to me if you die, too?
• Where do people go after they die?
• How can I see Daddy after he dies?
• What do I say to Daddy when I see him?
• When will Daddy die?

There are so many questions they may ask, and you may feel unprepared to answer them. Being honest is always a good approach. If you don’t know an answer, say so, and suggest looking it up together on the internet, or assure them you will find out and get an answer for them. The most important thing you can communicate to them is that they are safe, loved, and cared for.

Visuals Can Further Help Explain Dying

There are many good books to help children understand death and dying. Young children can benefit from social stories and a selection of picture books to help enhance their understanding of dying and what to expect. Recommendations will be included in the list of resources.

Tell Your Child in Advance About Any Change of Routine

Autistic children often do best when they know what to expect. They like predictability. If the parent is hospitalized, inform them if there will be regular visits to see the parent and what they can do with the parent while there. Explain what they will see, as tubes, machines, and fluid bags may frighten the child.

Let them know if they will be getting a new babysitter for times when the other parent must go to the hospital alone or when the other parent has to work late. If the sick parent has decided to stay at home, tell the child in advance about any equipment that may come into the home and what it is for. If the sick parent is going into hospice care, explain how that will differ from the hospital. Anytime there is a change of any sort, telling the child in advance can be very helpful. For the child, it may seem that so many things are beyond their control during this process. Consider giving them control where and when you can. For example, let them choose a toy to bring to the visit with their parent, whether they want to make a card or choose a card from the store, and when they are ready to end the visit and go home.

Make Memories During Visits to the Hospital or Hospice

When the dying parent has the energy, plan activities the child can do with the parent during visits. Can the parent read a new book to the child? Can the child bring a list of jokes to tell the parent? Can they play a children’s card game? Even sitting together in silence can create precious memories. Be sure to have a backup plan for the visit in case the dying person is not able to participate when the actual visit takes place.

Expect Strong Emotions and Learn How to Respond to Them

The intense emotions that arise when a loved one is dying can be overwhelming and confusing for an Autistic child. Many Autistic children may not understand what they are feeling in their bodies during such times, nor have the vocabulary to articulate these emotions. Similarly, non-speaking Autistic children might struggle to express their emotions due to limited access to the necessary words in their alternative communication tools.

Reassure the child that having big emotions is normal and that they are loved and supported through this difficult time. Let them know it’s okay to feel sad, angry, or confused—these are emotions everyone, even you, experience. Be mindful that death can amplify not only emotions but also sensory sensitivities and self-soothing behaviors. Be patient if you observe more meltdowns or shutdowns or receive reports from school about heightened challenges. Advise the school of the situation so they can be prepared to give extra attention and support, as needed, during this difficult period. Remember that the child is doing the best they can under the circumstances.

Consider the Child’s Sensory Needs

This may be difficult for the surviving parent if the dying parent is the one who immersed themselves into learning all they could about the Autistic child. It also would be difficult for the dying parent knowing that they are leaving their child who benefits from their support and knowledge. If possible, as you sit with the dying parent, record your conversations about the child’s sensory (or other) needs if you don’t feel you know them well enough. This also could reassure the dying parent that their valuable insight into the child will have a positive impact on their development for years to come. Simply stated, sensory differences are not a sidebar to the Autistic experience but can be responsible for many of the emotional and behavioural experiences the child will have.

Noise-cancelling headphones, headphones with favourite music, fidget toys, sunglasses, snacks and drinks should all be readily available as needed. It is not enough to rely on the child to ask for these tools, as they often don’t realize they are overwhelmed until they have a meltdown. Have sensory items ready and provide them before they enter an environment that may be noisy, bright, and too much for the child to cope with.

Should the Child Attend the Funeral?

It is up ultimately to the parents to decide if very young children are able to attend a funeral, burial, and wake. Deciding whether an Autistic child should attend a funeral or wake depends on their comfort level and ability to process the experience, their own wishes (do they want to attend?), and their sensory sensitivities (there will be a crowd, people will be crying loudly, and will it be too challenging to sit still through a service if they seek full body movement to calm themselves?).

Consider the social demands, too. Many people will want to speak to and comfort the child, who may become overwhelmed by all the talking. If the child wants to attend, explain what they are likely to see and hear. Social narratives or online resources that explain experiences related to death and attending a funeral can help prepare them for some of what they will see and experience. Give them options if the experience becomes overwhelming; for instance, can someone take them home?, is there a quiet room they can go to with some support?. All of these scenarios should be considered.

Do consider that if the funeral is open-casket, seeing their father’s dead body can be very upsetting and even traumatic. The surviving parent may not see traces of the trauma based on the child’s facial expressions or behaviour. If the child wants to attend, plan ahead in the event it becomes too overwhelming. Have a designated person who can pick up the child and care for them until the funeral rituals are completed.

If they do attend, remember those essential sensory supports, like headphones and fidgets, and ask the funeral director if there is a quiet place the child can go if they become overwhelmed. What follows is a single example of how one might create a ceremony at home. Each family’s situation would vary so widely, and each child is so unique. We encourage everyone to tailor their situation to match the sensory, cognitive and cultural needs relevant to their family. In a situation where a child decides not to attend the funeral, you might plan your own service for Daddy once you are home. Have the child share a favourite memory of the parent if they are able, perhaps play a favourite song of his and light a candle. If you find support in your faith, consider saying a prayer. You can create a memory box with the child to save keepsakes as a reminder of the parent.

The Grief Experience After the Funeral

Grief doesn’t end after the funeral and related rituals. Some children may take weeks or months to understand the finality of death and begin their grieving process. There is no timeline for grieving, so let the child proceed at their own pace.

Encourage Creativity

It is not helpful to push the child to communicate about the loss before they are ready. Instead, provide them with opportunities to be creative in a way that they enjoy. For example, have art supplies readily available and do arts and crafts with your child. Arrange playdates so they can spend time with a friend. If they enjoy the outdoors and seek lots of movement, you could take them to the park to climb, swing and run. Perhaps a walk is more pleasant for them. If they are old enough to journal, perhaps take them to choose a journal and let them know it is for sharing their feelings when they are ready. If cognition limits their ability to communicate in written word, you could encourage them to create pictures to capture their feelings and experiences. Assure them it will be a private book just for them unless they choose to share its contents with you.

As Much as Possible, Return to Regular Routines

If the child has been absent from gymnastics or karate lessons for a few weeks, start taking them again or take turns with another parent. If the deceased parent always played Lego with them on the weekend, ask if you can join in. The sooner you can help the child to return to a predictable schedule the sooner the child will feel a sense of certainty and routine. Daily routines provide stability and can help the child to feel safe during the emotional chaos that comes with grief.

Let Them Have Their Feelings

*Keep in mind that it is common for Autistic people of all ages to have difficulty understanding and expressing what they are feeling. This can be a cognitive or sensory-based reality.

Frequently, and for as long as the child’s emotional responses are amplified, remind them it is okay to feel angry, scared, sad or even guilty as part of the grieving process. They may think they are in trouble, but your calm response in telling them everyone goes through a similar experience when a loved one dies can be very reassuring. Keep in mind that healing from grief and loss is not a one-way journey that moves ever forward. The child may seem to be doing well and then suddenly be displaying signs of deep sadness again. Any feelings associated with grief can come up again without warning. The smell of the outdoors, a television show, or even reading to them may trigger memories that make the grief feel as fresh and raw as when it began. As a parent, your love and patience are something that will help to get your child through this experience. Just offer your patience and unconditional love as their feelings ebb and flow over time.

Provide Sensory Comfort

Your child might benefit from sensory items such as a trampoline, a weighted blanket, or a warm bath or shower. These activities can help to calm some children. To know what sensory tools and activities you can do at home to help your child relax, refer to their Occupational Therapy Assessment if it includes the sensory profile. An occupational therapy assessment for an Autistic child should always include a sensory assessment to determine how they process touch, sound, movement, and other sensory experiences. If you don’t have this kind of document, you may find it helpful to see if your work benefits, if relevant, cover an Occupational Therapy Assessment including the full sensory profile. Your Occupational Therapist can explain the implications of the findings for daily life. Just ask so you don’t leave before you understand the document or consider asking for a follow-up appointment so you can identify what you don’t understand in the document and have your questions answered. For professionals, consider scheduling a follow-up appointment to address what parents don’t understand in the report or where implications of findings are unclear.

Be Aware of Signs of Prolonged Grief

While there is no timeline for recovering from grief, be aware of signs that the child may benefit from professional help. If they’ve lost weight, have not been eating their lunch, and only pick at dinner and breakfast; if they are still calling out for you several times a night and are going to school exhausted; and if they no longer want to see their best friend or play with their collection of rocks or stuffies, consider that a grief therapist has expertise can help them overcome their current challenges and set them on the path to recovery and acceptance. You will find more information on signs indicating an Autistic may need professional help and what kind of therapists may be most helpful, in Part III titled, “Strategies to Help Autistic People Move Forward with Their Grief.”

Final Thoughts

Whether you are the surviving parent or another relative who has stepped up to take on the responsibility of raising the Autistic child, helping them cope with the death of a parent requires love, patience, understanding, and flexibility. By preparing the child for the loss and supporting them afterwards with clear communication, comforting routines, and sensory tools, you can help them navigate this very difficult time. Connect with parent support groups for Autistic children as you learn more about what it means for them to be Autistic, as autism can be expressed in countless ways. Remember, too, that every child grieves differently, and your support can be invaluable in helping them find their way through the tragedy of experiencing the death of a parent.

Learn more here:

• Symptoms of Autistic Grief & Loss
• Grief and Loss Collection

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