When we are grieving, we instinctively reach for a shared cultural script. It is a language of soft, well-worn phrases. We say “passed away,” “gone to a better place,” or “we lost them.”1 We use this language to protect ourselves and, most of all, to protect those we love.
But what happens when that script, intended as a comfort, creates only anxiety and confusion? For an autistic person, whether a child or an adult, the world is often processed in literal, concrete terms. Our metaphors become a painful riddle.2
The search for a shared language of grief can feel impossible. It can leave a caregiver, who is also grieving, feeling isolated and ineffective.
This experience is not a failure of empathy. It is a failure of translation.
This blog post is here to provide a new, more precise, and ultimately more compassionate vocabulary. We will explore why our abstract words can be harmful, how autistic grief is valid and real, and what concrete, loving scripts we can use instead.
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The Kindness of Concrete Truth
The most compassionate, loving, and safe approach is to use clear, concrete, and truthful language.
This is the cornerstone of effective support. We must use the words “died” and “death.”
These words are not cruel. They are anchors in a sea of confusion. They are firm, reliable, and logical.
When explaining to a child, one might say: “I have very sad news. Grandma’s heart stopped working. Her body stopped running, like a machine that has been unplugged.”
“This is called ‘dying,’ or ‘death.’ It means her body is no longer working, and we will not see her again.”
When explaining to an adult: “I have to tell you something very difficult. John’s illness was very severe, and the doctors were not able to make his body better. His body has stopped working completely. He has died.”
This language may feel blunt or harsh to us. It goes against our neurotypical social training. But to a literal processor, it is clear.
It is a map to a new, changed reality. It is a kindness. It provides facts that can be processed rather than metaphors that must be deciphered.
A Different Rhythm of Grieving
It is essential to validate the autistic person’s experience of grief. It is profound and real, but it may not look neurotypical. The love is just as deep, but the expression is different.
Autistic grief may not involve overt crying or the “expected” emotional displays. It may be delayed, appearing weeks or months later, long after the initial shock.
Grief may also be expressed not as recognizable sadness, but as anger or frustration about the intense disruption to routine.
It is a common and harmful myth to mistake a different processing style for a lack of feeling or empathy. The love and suffering are just as profound.
Sometimes, the person who can remain logical and ask the hard, concrete questions becomes an accidental pillar of strength. They may become “highly interested in the science, research, and medical facts,” acting as a translator for the family.
This is not coldness. It is a form of grief management. This person is coping by seeking data, translating the emotional chaos into facts. This is their way of gaining control in an illogical situation.
When Grief Disrupts the World
Death does not just remove a person. For the autistic individual, it can shatter the sensory and executive function systems that allow them to navigate the world.
Grief often manifests as an increase in autistic traits. This can include a regression of skills, decreased social ability, or significant changes in sleeping or eating habits.
The person may experience more autistic shutdowns or meltdowns. Grief, after all, is a perfect storm of shutdown triggers: a massive change in routine, emotional distress, and sensory overload from new situations.
They may need to engage in more self-regulatory behavior, or “stimming,” such as rocking, hand-flapping, or pacing.
It is critical to understand these are not “bad behaviors.” They are expressions of profound distress. Stimming is a functional way to self-soothe in an overwhelming world. A shutdown is a protective mechanism, like a fuse blowing, to prevent a total system collapse.
The Logic of Loss
An autistic person may process their grief by trying to build a new, logical model of the world that includes this new, hard fact. This may involve a fascination with the topic of death, or asking blunt, repetitive, and logical questions.
“What does the body look like?” “Where is it now?” “What happens when the heart stops?” “What is the nitrogen cycle?”, and “Why are people crying?”
These questions may seem detached or morbid to a neurotypical person in an emotional state, but they are vital. The person is not being gruesome. They are an engineer trying to understand why a bridge has collapsed.
The best response is to answer these questions simply, honestly, and as repeatedly as necessary.
“People are crying because their brains are feeling a very big, sad emotion. Crying is what their bodies do to let the sadness out.” This provides a logical, somatic explanation for an emotional phenomenon.
Translating Our Human Rituals
The next challenge is explaining our complex, abstract rituals. A funeral, a wake, or a shiva is a profoundly confusing social event. It is rich with unwritten rules and intense sensory input.
The single most effective tool for this is to create a simple, concrete narrative. This script can explain a situation in literal terms, providing a predictable map.
Before explaining the what of the funeral, we must explain the why.
One might say: “A funeral is a meeting for all the people who loved the person who died. It is a time to come together to say goodbye.”
“People will be sad, and some may cry. That is okay. People also tell stories about the person. This helps them remember the happy times.” This explains the function of the ritual.
A Practical Map for the Funeral
A literal script for a funeral pre-loads the information, which reduces anxiety and helps prevent sensory overload. It should be descriptive and concrete.
“We will go to a building called a funeral home. There will be many flowers, and you may be able to smell them.”
“There will be a special box called a casket. The casket may be open or closed. If it is open, the person’s body will be inside. The body is not working and will be very still. It might look different. You do not have to look if you do not want to.”
“People will be talking quietly. Some people may be crying, and that is a normal sound when people are sad.”
“A person may stand at the front and talk about the person who died. There may be music or singing.”
“People may want to shake my hand or give me a hug. They might say, ‘I am sorry for your loss.’ This is a script they use to show they are sad. I can say ‘Thank you’ or I can just nod.”
This script provides a predictable social map and removes the heavy burden of social guessing.
Creating Sensory Safety in Sorrow
Attending a ritual is one thing; enduring it is another. Funerals are often overwhelming, with strong flower smells, the sound of crying, and unfamiliar music.
We must plan for sensory needs. Bring headphones or a familiar fidget object. Sit in a place where a quick exit is possible.
Let the person know, “You can take a break when you need to. We can go outside or sit in the car.”
The most compassionate act may be to validate the choice not to attend. Attending the funeral is not a test of love. It is not a requirement for grieving.
There are many other, equally valid ways to grieve. These can include a private viewing, watching a virtual service, or visiting the cemetery at a quiet, off-peak time.
You can also co-create a personal ritual. Autistic-led rituals are powerful because they are concrete and authentic.
This may mean eating a food the person loved, or talking about the scientific facts of the life cycle, such as “we become plants.” These are not “lesser” rituals. They are real, tangible acts of remembrance.3
The Love That Remains
Just as the death must be concrete, so must the memory. The grief is real. The pain is real. But the connection can also remain real.
“We will not see Grandma again, but we can remember her.”
Talk about specific, fond memories. Look at photographs and create a memory box. Talk about the person’s legacy, not as an abstract concept, but as a fact: “People’s legacy live on in their ideas.”
This aligns with the deepest wisdom of palliative care. The goal is not a “good death,” but “a good life to the very end.”4
It is about what matters most, such as expressing love and finding meaning.5 Our work is to help the grieving person—autistic or not—find a way to carry that love forward in a way that is tangible and meaningful to them.
Doula Assistance for Autistic Individuals
In this overwhelming situation, a guide can be invaluable. An end-of-life doula, especially one informed on neurodiversity, is a non-medical professional trained to provide holistic support to individuals and families. For an autistic person and their family, this specialized assistance can be uniquely beneficial.
This person can serve as a vital “translator,” helping the neurotypical family understand the autistic person’s literal processing and sensory needs while also helping the autistic person decipher the abstract rituals and emotional expressions of those around them.
As an informed companion, they can advocate for the individual’s needs, ensuring sensory safety plans are respected during rituals, and manage overwhelming logistics like planning a sensory-friendly memorial.
A companion or doula is also skilled at co-creating the concrete, personal rituals this guide emphasizes, helping the family design meaningful acts of remembrance that are authentic to them.
Furthermore, doulas are trained to hold space for all expressions of intense emotion without judgment, offering powerful comfort and validation for an autistic person whose processing style may not be “expected” by others.
A Concrete Compassion
True compassion is not found in the soft metaphors we use to hide from reality. It is found in the courage to offer the truth, gently and clearly, to someone who needs it to make sense of the world.
Explaining death in concrete terms is not cold. It is a profound act of love. It is building a bridge of logic and trust to a person in a moment of deep distress, offering them a solid, safe, and honest place to stand.
As you reflect on your own journey, what is a simple, concrete ritual or act of remembrance that has brought you or a loved one a moment of peace?
- Kübler-Ross, Elisabeth. “On Death and Dying.” This foundational text transformed our cultural conversation, identifying the common stages of grief and challenging the sterile silence that once surrounded death. ↩︎
- Didion, Joan. “The Year of Magical Thinking.” A powerful memoir that masterfully documents the disorienting “cognitive fog” and “magical thinking” that grief can create, revealing its profound neurological and psychological impact. ↩︎
- Helbert, Karla. “Finding Your Own Way to Grieve: Creative Activity Workbook for Kids and Teens On the Spectrum.” An essential, practical guide that validates the unique grieving process of neurodivergent individuals, offering creative strategies for processing loss. ↩︎
- Gawande, Atul. “Being Mortal: Medicine and What Matters in the End.” A critical exploration of how modern medicine often fails the dying, arguing for a shift in focus from mere survival to a good and meaningful life to the very end. ↩︎
- Byock, Ira. “Dying Well: Peace and Possibilities at the End of Life.” A compassionate guide from a palliative care pioneer that reframes dying as a meaningful life event and outlines what is most important for finding peace. ↩︎
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