Supporting Your Neurodivergent Loved One Through Grief and Loss: A Practical Guide
Grief is a universal human experience, yet its expression is as unique as the folks who feel it.
While we often have a set of expectations around how mourning "should" look, for those of us who love and support individuals who are autistic or neurodivergent, understanding that their experience of grief can be vastly different is paramount.
This isn't about a lack of feeling, but rather about a different way of processing and expressing profound emotions. Curious?
This guide is for you—the ally, friend, and family member—seeking to provide truly meaningful support during times of loss, in all its complex forms. in all its forms.
Understanding A Sensory World During Grief
For neurodivergent individuals, the sensory landscape of grief can be particularly challenging. Heightened sensitivities can turn typical comforting environments into sources of overwhelming distress.
Think about a funeral home, with its bright lights, echoing acoustics, and the often-cloying scent of flowers. These sensory inputs can amplify anxiety and make it difficult for a grieving neurodivergent person to find any semblance of peace.
Even a gentle hug, intended as comfort, might feel physically overwhelming due to tactile sensitivities.
The Basics of How You Can Help:
Create Sensory-Friendly Spaces: Offer a quiet, dimly lit room where they can retreat if needed. Provide familiar and comforting items like a favorite blanket or fidget toy.
Be Mindful of Sensory Details: When planning gatherings or visits, consider noise levels, lighting, and scents. Ask directly what would make them feel more comfortable.
Respect Sensory Needs: Understand that stimming behaviors, like rocking or hand-flapping, can be self-soothing mechanisms during distress. Allow and even encourage these behaviors.
Offer Alternatives: If a traditional event is too overwhelming, suggest alternative ways to honor the loss, such as a quiet walk in nature or a small, private remembrance.
Communication: It’s Not Just About Words
Neurodivergent individuals may communicate their grief in ways that aren't always immediately obvious to neurotypical individuals.
Verbal processing of emotions can be difficult, and they might rely on other forms of expression.
How You Can Help:
Observe and Listen Actively: Pay attention to non-verbal cues, changes in behavior, or increased stimming. These can all be indicators of distress.
Offer Alternative Communication Methods: Suggest writing, drawing, or using visual aids to express feelings. Sometimes, talking about the loss in a factual, detailed manner is their way of processing.
Be Patient and Avoid Pressuring: Don't force them to talk about their feelings if they aren't ready. Simply being present and offering a safe space can be incredibly supportive.
Recognize Focused Interests as Communication: Sometimes, immersing themselves in a special interest is how they process intense emotions or find comfort.
Emotional Processing: Respecting The Timeline
Grief doesn't follow a linear path for anyone, but for neurodivergent individuals, the timeline and intensity of emotions can be particularly unique. They might experience intense fixations on certain aspects of the loss, or their emotional response might be delayed. Emotional regulation can also be challenging.
How You Can Help:
Understand That Grief Isn't Always Outward: A lack of overt emotional display doesn't mean a lack of feeling. Grief can be deeply internal.
Be Prepared for Intense Reactions: Meltdowns or shutdowns can be expressions of overwhelming grief. Respond with calm and understanding, providing a safe space for them to regulate.
Respect Their Pace: Avoid comparing their grieving process to others or expecting them to "move on" within a certain timeframe.
Validate Their Feelings: Even if their emotional response seems different from what you expect, reassure them that their feelings are valid.
The Importance of Routine: Providing Stability in Chaos
Routine and predictability are often crucial for the well-being of neurodivergent individuals. Loss can disrupt these vital structures, leading to increased anxiety and distress.
How You Can Help:
Help Maintain Familiar Routines: Offer support in keeping their daily schedule as consistent as possible.
Prepare for Necessary Changes: If changes are unavoidable (like funeral arrangements), provide clear and advance notice, explaining what to expect.
Offer Structure and Organization: Assist with tasks that might feel overwhelming due to grief-related executive function challenges.
Be Patient with Changes in Routine: Understand that adjusting to a new reality takes time, and there might be setbacks.
The Unspoken Language of Grief: Navigating Alexithymia
For some neurodivergent individuals, particularly those on the autism spectrum, there can be an additional layer of complexity in navigating grief: alexithymia.
This term describes a difficulty in identifying and describing one's own emotions. It's not that the feelings aren't there, but rather that the individual may struggle to recognize, label, and articulate them in the way that neurotypical individuals might.
When grief enters the picture, this inability to name feelings can make an already challenging experience even more intricate.
An autistic or neurodivergent person might feel a profound sense of unease, sadness, or loss, but lack the internal vocabulary to pinpoint exactly what they are feeling.
Instead of saying "I feel sad," they might experience a tightness in their chest, increased fatigue, or a general sense of being unwell without being able to connect it directly to the emotional pain of grief.
This can manifest in various ways.
Grief might be expressed through changes in behavior, such as increased withdrawal, heightened anxiety, or a greater reliance on routines. Sensory sensitivities might become more pronounced, or stimming behaviors might increase as a way to cope with these unnamed internal states.
While others might expect tears or verbal expressions of sorrow, an individual with alexithymia might communicate their grief through these more indirect means.
The inability to name feelings can also make it harder for individuals to seek and receive the support they need. If they can't articulate "I'm feeling incredibly lonely," it's difficult for others to offer the right kind of comfort or assistance.
This can lead to further feelings of isolation and being misunderstood.
For Neurodivergent Individuals with Alexithymia:
Focus on Physical Sensations: Pay attention to how your body feels. Sometimes, physical sensations can be clues to underlying emotions. A racing heart might indicate anxiety, while a heavy feeling in your stomach could be sadness.
Track Changes in Behavior: Notice shifts in your routines, interests, or energy levels. These changes can sometimes reflect emotional distress.
Use Visual Aids: Emotion wheels or charts that depict different feelings and their associated physical sensations can be helpful in identifying what you might be experiencing.
Be Patient with Yourself: Learning to identify and name feelings can be a process. There's no right or wrong way to do it.
For Loved Ones:
Observe and Validate Behavior: Recognize that changes in behavior, sensory sensitivities, or stimming can be expressions of grief, even if the person can't name the feeling.
Offer Concrete Support: Instead of asking "How are you feeling?", which can be difficult to answer, offer specific help like "Would you like some quiet time?" or "Can I help you with this task?"
Be Patient and Understanding: It might take time for the person to process their emotions. Avoid pressuring them to talk about feelings they can't yet identify.
Learn About Alexithymia: Understanding this condition can provide valuable insight into how your loved one experiences and expresses grief.
By understanding the complexities that alexithymia can add to the neurodivergent experience of grief, we can offer more appropriate and compassionate support that truly meets individual needs.
Addressing Misconceptions About Neurodivergent Grief
Let’s address some common misconceptions about how neurodivergent individuals experience grief.
Sometimes, their reactions might be misinterpreted as a lack of empathy or understanding. For instance, a factual or seemingly detached response might be perceived as not caring, when it's simply their way of processing.
Similarly, intense emotional reactions might be seen as inappropriate or overblown, when they are genuine expressions of profound sadness. Remember that different expressions do not equate to a lack of feeling, and judging their grief through a neurotypical lens can be deeply invalidating.
Supporting Unique Comfort and Coping Mechanisms
Neurodivergent individuals might find comfort in ways that are different from what you might expect. "Special interests can become a refuge, providing a sense of normalcy and predictability. Stimming behaviors can be self-soothing. Seeking out specific sensory inputs might be comforting.
How You Can Help:
Respect Them: Allow them to engage in their special interests as a way to cope.
Respect Stimming: Recognize that stimming is a healthy way for them to regulate emotions.
Offer Sensory Comforts: Provide access to items or activities that they find soothing.
Avoid Discouraging Unique Coping Mechanisms: Unless a behavior is harmful, allow them to engage in what brings them comfort.
Self-Advocacy During Grief: Empowering Your Loved One
Encourage your loved one to understand and advocate for their own needs during grief.
Help them identify what kind of support is most helpful for them and how to communicate those needs to others. This might involve practicing phrases they can use, creating visual supports outlining their needs, or helping them connect with neurodiversity-affirming therapists or support groups.
Remind them that their way of grieving is valid and that they have the right to ask for what they need.
Seeking and Offering the Right Support: A Partnership in Grief
Supporting a neurodivergent loved one through grief is a partnership built on empathy, patience, and a willingness to understand their unique experience. It involves actively listening (both verbally and non-verbally), respecting their individual needs and coping mechanisms, and offering concrete support in ways that are meaningful to them.
Remember that grief doesn't look the same for everyone, and by embracing neurodiversity in our understanding of loss, we can become more effective and compassionate allies to those we care about.
Grief Beyond Loss to Death: Recognizing All Forms of Sorrow
It's crucial to remember that grief for neurodivergent individuals extends beyond the loss of a loved one through death.
They can experience profound grief over the loss of routine, a special interest, a safe space, or a significant friendship.
Validate these experiences and offer support that acknowledges the significance of these losses in their lives. Don’t push if your loved one isn’t interested in talking.
By approaching grief with an open heart and a willingness to learn about the neurodivergent experience, we can provide the meaningful support our loved ones need to navigate their own unique path through sorrow.
Please know that I am neurotypical and do not claim to be an expert here. I made mistakes in this post, probably even many mistakes, and I am happy to reicve corrections: info@carlypollacktherapy.com
