Navigating Autism and Grief: Understanding and Supporting Unique Emotional Journeys

Grief is an intense and inevitable facet of life. Though the process is distressing for everyone, neurotypical people (people without autism) and autistic individuals will likely experience grief differently. Adults with autism spectrum disorder often have delayed and unexpected reactions to grief. Because of this, it is important for loved ones to recognize the signs of autistic grief and the unique support required for autistic adults during the grieving process. 

Bereavement is a universal experience. However, autistic individuals have unique challenges that affect their ability to recover from grief. 

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Grief is typically broken down into five stages: 

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• Denial: Feeling numb or acting as though nothing has happened.
• Anger: Experiencing frustration, believing the circumstances are cruel or unfair––or even feeling angry with the deceased person themselves.
• Bargaining: Making “deals” with themselves or a higher power in an attempt to feel better.
• Depression: Intense pain or sadness that can come in waves for several months or years.
• Acceptance: Coexisting with the loss, learning to live with the pain and absence. 

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While grieving is an individualized experience that prescribed stages cannot neatly encapsulate, neurotypical individuals more or less follow that pattern. Autistic people, however, do not often experience grief as a linear cause-and-effect scenario. Grief for autistics can more closely resemble a cycle of suppressing emotions and then having outbursts, which can be disorienting and disrupt daily life. 

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While everyone needs support during the grieving process, autistic individuals will likely require both immediate and ongoing support catered to their specific needs. 

Most guidance surrounding grief and how to process it focuses on the experiences of non-autistic people. While it’s important to represent neurotypical grief, it only paints part of the picture. An estimated 1 in 45 adults in the United States are autistic. That means around 5 million people in the U.S. alone will have to, at some point in their lives, confront the unique challenge of grieving while autistic. Neurodiverse individuals can deviate from the five stages of grief, and their grief often presents differently than their neurotypical peers. For this reason, autistic individuals and their support systems need to be aware of the different ways in which grief and autism may impact one another.

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What are the signs of grief in autistic individuals?

When an autistic individual is grieving, their outward expressions of grief may look like:

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• Anger that seems unrelated to grief, perhaps stemming from disruptions to routine or complicated social situations
• Changes in sleeping or eating habits
• Skill regression, or needing more help from others than they did previously
• Loss of confidence, or feeling like they are capable of fewer things than they were before

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Those observable changes are not necessarily different from those without autism. For example, it’s reasonable for an individual without autism to exhibit changes in sleep or appetite or an increased need for support. However, there are other signs of grief in autistic individuals that are more unique to the neurodiverse population. 

These signs include: 

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• Feeling angry or restless
• Having more meltdowns or shutdowns when faced with disruptions to routine or intense emotions
• Needing more help from others to complete tasks due to difficulties with executive functioning
• Low self-esteem, perhaps as a result of needing to navigate complicated or unfamiliar social situations like funerals or hospital visits
• Not feeling grief or sadness, instead appearing numb or unaffected 
• Rumination about death or the circumstances surrounding a loss, which can lead to feelings of anxiety or feeling “stuck”
• An inability to describe their feelings, also known as alexithymia 
• Physical symptoms like nausea and headaches

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Because autistic grief can be non-linear and doesn’t necessarily adhere to the commonly referenced five stages, these signs can occur at any point in the grieving process. However, apathy or frustrations about navigating funeral etiquette are more likely to occur in the immediate aftermath of the loss.

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Why is it important to recognize grief early in autistic individuals?

A lack of understanding about autism and grief can cause additional struggles. In a 2024 study, some autistic individuals said that their grief was treated more like an increase in difficult autistic behaviors, which led to anxiety about being perceived as troublesome or inconvenient. Not only is this treatment dismissive, but it also leads to isolation for autistic people with more intense social or communication challenges. When a loved one can recognize signs of grief in an autistic individual, that person is less likely to feel shame. This is crucial because shame may prevent them from reaching out for support. 

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Additionally, autistic people rely on routines and predictability. Strict adherence to routine and resistance to change are part of the diagnostic criteria for autism. Research suggests that grief and bereavement lead to changes or disruptions to routine. This means that autistic people not only have to process the incredibly complex emotions that come with grief, but they must do so while also facing distressing changes in routine. That combination is challenging to manage alone. Therefore, it’s imperative that those with an autistic loved one––or those who work with autistic individuals––be able to identify the signs of autism-specific grief so they can offer support as soon as possible.

Even though autistic grief can be complicated, there are still plenty of coping strategies that can help manage grief. Family members or other members of a support system can implement these support strategies. Here are some tips. 

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• Anticipate different expressions of grief: Remember that autistic grief looks different than neurotypical grief, and anticipate these differences. For example, autistic individuals may not cry when others are, or they might laugh at the wrong time. Remember that autistic grief varies. You may want to communicate this to other family members to clue them in, since their emotions may not be easy to read. 
• Stick to routines: Routine disruptions are especially distressing, so adhere to routines whenever possible to prevent further distress.
• Encourage self-soothing: Ensure access to comfort items and usual methods of self-soothing. This could mean having familiar fidgets on hand or allowing for breaks to practice soothing techniques like mindfulness or stimming.
• Prepare for new social situations: Explain what to expect at a funeral and what reactions the autistic individual will likely witness. For example, let them know there will likely be many people crying, and people may offer hugs or other signs of support.
• Use clear language: Avoid using euphemisms for death or illness. Instead, use accurate language when discussing the circumstances around the loss. Autistic individuals tend to be literal thinkers and may struggle with phrases such as “they passed on” or “they’re on the other side.” 
• Keep an open dialogue: Have frank discussions about any questions that may come up surrounding death, illness or how to adjust to life without the person they have just lost.

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Seek professional help: Find local therapists or grief support groups so that the grieving individual can find community with other autistic or neurodivergent people.

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Communal support is vital to recovery from grief. This is true of autistic people and non-autistic people alike. Because grieving with autism spectrum disorder is such a unique process, it can be difficult for autistic individuals to find camaraderie in neurotypical spaces. For that reason, support groups that focus on autistic bereavement offer invaluable support. 

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What benefits do support groups offer autistic individuals?

Support groups offer opportunities for autistic individuals to grieve with one another. They can commiserate about the things they’re experiencing that their non-autistic peers are not, such as heightened distress around disruptions to their routine and the stress of managing others’ expectations surrounding loss and grief. 

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Further, being in a support group with other bereaved autistic individuals allows autistic individuals to witness the grief cycle that they’re experiencing. With so much of the conversation around grief centering on the neurotypical experience, autistic people don’t have many clear examples of what grief will look like for them. Hearing about other autistic people’s experiences allows participants to develop realistic ideas about how disruptive grief is and how long the healing process may take. 

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Additionally, grief often disrupts the routines that autistic people rely on. For example, the death of a support person is not only emotionally difficult––but the support and structure they offered also go away, leading to more distress. Support groups typically meet on set days and times, which can provide a sense of structure during this difficult time. 

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How do I find the right support group?

Support groups exist both in person and online. Websites like Psychology Today have search features that let you search for local support groups and can be sorted based on factors like location and age. Additionally, the Autism and Grief Project's resource library can serve as a starting point for finding support groups or other professional help.

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In instances where the autistic individual already sees a therapist or another mental health professional, these providers may be able to provide information about local or online support groups.

Grief can reshape and challenge family dynamics––especially when a family member is autistic.  To navigate family dynamics during grief, it’s important to be aware of potential challenges that may arise, learn how to best cope with those challenges and establish open lines of communication among family members. 

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How does grief impact the family dynamic when one or more family members are autistic?

When faced with grief, family dynamics often change as a result of emotional and practical stressors. Practically, a familial loss can lead to changing family structures, like people having to take on new roles to accommodate for a loved one’s death or absence. Also, loss of income can lead to financial strain and lifestyle adjustments, like having to sell the family home or move to a new school. Emotionally, bereavement can lead to more intense emotions and reactions that can result in increased conflict. When one or more family members are autistic, those challenges can be exacerbated.

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Because grief presents differently in autistic and non-autistic individuals, it’s possible for autistic family members to feel that their grief goes unacknowledged. Experts call this disenfranchised grief. When one family member feels that their grief is being ignored or invalidated, family hardships can become more pronounced. Neurotypical family members must support their autistic loved ones by accepting their grief without critique. Let them know that whatever they feel is okay, even if they appear unaffected or anxious instead of sad. 

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There are ways to include one another in grief that can be supportive to neurotypical and neurodiverse individuals alike. For example, including autistic loved ones in funeral preparation allows the autistic individual to prepare for potential challenges the funeral may present while also allowing the family to feel united in their efforts to honor the deceased. Additionally, neurotypical family members can ask questions to help autistic individuals understand their emotions. This can help an autistic person process complicated emotions while also allowing for honest conversations about grief and loss that can feel comforting for all parties.

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Maintaining communication and emotional support within the family

It’s of utmost importance for families to support one another during the grief process. Non-autistic family members should strive to recognize signs of grief in their autistic loved ones and help them access appropriate support. They should remember that autistic people grieve differently. Expecting them to behave in the same ways as neurotypical family members sets all parties up for anxiety and frustration. 

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It’s imperative for families to maintain open lines of support and communication. Grief is an intense stressor, so it’s especially important to communicate with one another during the grieving process. Though the sources of big emotions may be different for autistic people than their neurotypical family members, everyone should be given the space to express their feelings and receive support. 

Emotional resilience is the ability to cope with and recover from unexpected situations and stressors, such as the death of a loved one. It allows individuals to better manage distress and remain regulated, even during challenging times.

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How can autistic individuals build emotional resilience?

Emotional resilience can be improved with coping skills that aid in emotional regulation, including:

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Journaling

A journal provides a safe forum for individuals to process emotions without judgment. It never judges or places expectations on the writer. Journaling is a way to express complicated feelings without managing others’ reactions or expectations. Slowing down to write about thoughts and emotions can also help the writer make more sense of their feelings.

Gratitude journaling is a specific type of journaling that can also lead to increased emotional resilience and regulation. To practice gratitude journaling, individuals reflect on their positive experiences and feelings, writing down what they’re grateful for. Focusing on positive experiences encourages a mindset shift from negative to positive thoughts, improving a person’s ability to cope with challenging circumstances. 

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Mindfulness

Mindfulness is a useful technique that relies on grounding oneself to calm the mind and body. When an individual is practicing mindfulness, they focus on being fully present in the current moment and accepting their current emotional and physical state. Mindfulness can be achieved in many ways, including deep breathing exercises or guided meditations.

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Sensory activities

Sensory activities like using fidget toys, snuggling up under a weighted blanket, or listening to a favorite song can be comforting or grounding. Engaging in sensory activities can be regulating during difficult times.

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Engaging in hobbies

It’s important for everyone, including neurodiverse individuals, to spend time enjoying their hobbies. Hobbies provide stress relief, opportunities for social interaction and increased confidence––all important ingredients of emotional resilience. 

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Practicing social skills and emotional empathy

Empathy is the ability to understand another person’s feelings and perspectives. Empathy is a cornerstone of building meaningful connections. When an autistic individual has access to a large support system and fulfilling relationships, they will naturally become more regulated and emotionally resilient.  

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What role do loved ones and support people play in developing emotional resilience?

Loved ones and caregivers can help autistic individuals build emotional resilience before facing grief. Members of an autistic individual's support system should encourage them to build emotional resilience during less stressful periods of life so that they can rely on it during hard times. Family members and other supportive people can help encourage the coping skills mentioned above. For instance, engaging in the autistic individual's hobby together not only reaps the benefits of said hobby but also provides an opportunity for socializing and connection. Further, friends and family members can help schedule time for mindfulness or journaling so that it becomes part of their autistic loved one’s routine. 

Unfortunately, death is an inevitable part of life. When faced with grief, autistic people need to receive appropriate support. 

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If you’re autistic (or suspect that you are) and struggling with grief, Prosper Health can help. We offer neurodiversity-affirming therapy, covered by insurance. Our expert clinicians incorporate evidence-based therapies into sessions, tailoring all care to the unique needs of autistic adults. They understand how autistic people uniquely experience grief and provide specialized support. 

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Grief is incredibly difficult, but we’re here to help you. Contact us today to get started.