Understanding grief through the lens of autism

Understanding grief through the lens of autism

Grief is a universal human experience, but how it is felt, expressed, and processed can vary greatly from one person to another. For autistic individuals, the grieving process often looks different from the neurotypical experience, shaped by unique ways of understanding and interacting with the world. National Grief Awareness Week provides a meaningful opportunity to explore how autistic people navigate grief, dismantling misconceptions and fostering empathy and support for their unique journey.

Grief and autism: A different lens

Grief in autistic individuals may manifest differently due to the ways autism impacts communication, emotional regulation, sensory processing, and cognitive understanding. While neurotypical individuals might articulate their emotions openly or exhibit traditional signs of mourning, an autistic person may experience grief in ways that are less immediately visible to others.
Here are some key ways autism can influence the grieving process:

• Emotional regulation challengesAutistic individuals may experience emotions intensely, but regulating those emotions can be difficult. Grief, with its complex and often overwhelming feelings, can lead to heightened anxiety, meltdowns, or shutdowns. For others, grief may appear as emotional numbness or detachment. These responses are not indicative of a lack of feeling but reflect the challenge of processing and expressing intense emotions.
• Literal thinking and abstract conceptsGrief often involves abstract ideas, such as death, loss, and the permanence of change. For autistic individuals who process the world more literally, these concepts can be confusing. A young autistic person, for example, might struggle with the idea of a loved one “going to sleep forever” if euphemisms like these are used instead of clear, direct explanations.
• Sensory processing differencesGrief can heighten sensory sensitivities, making sounds, lights, and textures that were once tolerable now overwhelming. Conversely, some autistic individuals may seek out comforting sensory input—such as weighted blankets or fidget toys—to help self-soothe during this emotional upheaval.
• Unique ways of expressing griefWhile neurotypical individuals may express grief through crying, talking, or withdrawing, autistic people might communicate their feelings differently. They might fixate on routines, repeatedly ask questions about the loss, or express grief through their special interests, like drawing or storytelling.

Challenges of misunderstanding autism and grief

One of the greatest obstacles autistic individuals face when grieving is misunderstanding from others. Well-meaning friends, family, or caregivers might misinterpret their behaviour as indifference or assume they don’t fully comprehend the loss. This misconception can lead to isolation, as the autistic person’s grief is invalidated or overlooked.

For example, an autistic child who doesn’t cry at a funeral might still be experiencing profound sadness. They may be processing the event internally or finding it difficult to articulate their emotions in the expected way. Similarly, an adult who fixates on specific details of the loss—like where a loved one’s belongings will go—may be expressing grief through their need for order and understanding.

Strategies for supporting grief in autistic individuals

It’s essential to provide support that aligns with the autistic person’s unique needs and preferences. Here are some strategies:

• Use clear, direct communicationAvoid euphemisms or vague language when explaining death or loss. Be honest and factual, and consider using tools like social stories to help clarify the situation. For example:“Grandpa has died. That means his body has stopped working, and we won’t see him again.”This approach helps reduce confusion and fosters a sense of trust.
• Honour their grieving processRecognise that their way of grieving may not look like yours—and that’s okay. Respect their need for routines, even during times of upheaval, as these can provide stability and comfort.
• Offer emotional regulation toolsProvide sensory aids, like noise-canceling headphones or fidget items, to help them cope with the overwhelming feelings grief may bring. For older autistic individuals, journaling, art, or other creative outlets can offer an effective way to express emotions.
• Be patient with repetitionAutistic individuals might repeatedly ask questions about the loss as they try to process and make sense of it. Answering with patience and consistency can help them navigate their emotions and find closure.
• Encourage rituals that feel meaningfulAllow them to take part in mourning rituals in a way that feels comfortable. This could include creating a memory book, lighting a candle, or saying goodbye through art. Tailor these rituals to their unique interests and abilities.

The strength of the autistic perspective

While grief can be a deeply painful experience, autistic individuals often bring unique strengths to the grieving process. Their ability to focus deeply on memories, relationships, or specific aspects of their loss can lead to meaningful ways of honouring loved ones. They might create beautiful tributes through their special interests, such as composing music, writing stories, or building memorials.

Additionally, the autistic preference for honesty and directness can open up space for conversations about death and loss that many shy away from. Their perspective can challenge others to rethink the way grief is approached, helping to break down taboos and encourage a more inclusive understanding.

Empathy and understanding: A call to action

Grief, while universal, is deeply personal. For autistic individuals, it is essential to approach their grieving process with empathy, patience, and a willingness to learn. By recognising and respecting their unique needs, we can offer the support they deserve and ensure their experiences are validated.

As we mark National Grief Awareness Week, let’s commit to creating a world where autistic individuals feel seen, understood, and supported—not just in their grief but in every aspect of their lives. Together, we can foster a community of compassion and inclusivity, one that honours the diverse ways we all experience loss and healing.