Languages of Loss: On Grief & Neurodivergence
(Originally published 11.25.19)
When my friend Josie passed away in 2018, I was suddenly surrounded by a community of The Grieving. As a Deathling, it felt like the moment I’d been training for - my moment to use all of this knowledge I’d cultivated to support people who were hurting. What I wasn’t prepared for was that Josie's mother, Sam, wasn’t just grieving - they were grieving and neurodivergent. Their mind and body were processing loss in their own language, and despite 1 in 7 people being neurodivergent, there really aren’t any resources on the subject.
Over the last couple months, I’ve had the privilege of speaking to several neurodivergent people about their grief experiences. The group collectively represents the conditions/diagnoses of Bipolar Type II, Generalized Anxiety Disorder, Depression, Post-Traumatic Stress Disorder, Dissociative Identity Disorder, Obsessive-Compulsive Disorder, Attention Deficit Hyperactivity Disorder, Paranoid Personality Disorder; and multiple people are on the Autism Spectrum.
If I had to sum it up in a sentence: What I learned was that neurodivergence often changes the way that grief works, but it doesn’t change how grief is tended. The language barrier between neurotypicalness and neurodivergence demands a focused attention, intentional observation and clear manner of communication from which all grievers, (and really all people), can benefit.
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I would like to pause for a moment to emphasize that the neurodivergent experience is as individual as the grief experience, and these examples will not hold true for everyone. I’d also like to emphasize that I am neither a medical nor mental health professional. This is my effort to use my privilege and platform to start a conversation, and help share others’ experiences by providing the safety of anonymity. If you're ever concerned for a loved ones safety or health, don't hesitate to get them in contact with their mental health provider or doctor.
WHAT TO EXPECT:
Grief amplifies. While the interviewees represented a variety of diagnoses, the common thread of their grief experience was an increase in the severity of their symptoms. Some heightened symptoms were :
- anxiety and panic attacks
- physical pain
- extreme fatigue
- insomnia
- stimming (a repetitive self-self-soothing behavior)
- depressive episodes
- dissociative episodes with associated memory loss
- new alters
- suicidal ideations
Grief demands a lot of the mind. Your loved one may experience executive processing difficulties. They may struggle to assess what needs to be accomplished and arrange tasks into an actionable plan. Even with a plan, they may struggle with follow through, shifting between tasks, or recovering focus after interruption. Grief makes all people forgetful; be prepared to give gentle reminders.
Also common are sensory processing difficulties. Interviewees remembered being easily overstimulated, and overwhelmed in active or crowded spaces. Conversely, some became severely desensitized; they had difficulty recognizing regular stimuli (pressure, temperature, their name being called), and assessing their body’s signals (pain, hunger, fatigue).
Grief demands patience. It’s important to remember not to take your loved one’s expression of grief personally. They may need to vent, isolate themselves, suddenly become nonverbal or change plans to manage overstimulation. Some people may present in a calm way, but that doesn’t mean they aren’t having an intense emotional experience internally. Others may become extreme and demonstrative, having outbursts and fixations
Prepare to be patient with time as well. We exist in a culture that already unfairly pressures grievers to “move on” in a matter of months. On the whole, neurodivergent grief takes much longer (often several years) to process and reach a point of integration.
WHAT TO DO:
“Instead of treating me like you want to be treated; treat me like I want to be treated. This means asking.” - Sam
Neither grief, nor neurodivergence, negates autonomy. There are times when we all may need more help or support, but that does not undermine our right to dignity, respect and autonomous personhood. Providing empowering support is a skill that takes practice and intention - you won’t always get it right, but be kind to yourself and try your best. When in doubt, ask.
- Ask for the permission/consent of the person before doing something for them, and especially before touching them.
- Be willing to do a task for the person if they’d like, but focus on finding ways to facilitate them doing the task themselves.
- Trust and respect the person’s expressions. If they share their inner world or feelings with you, believe what they say instead of prioritizing your own assumptions about how they feel, or should feel.
- Check in during a calm moment about their preferred care during emotional times. Many people have a routine that may include things like lowering the lights, using weighted blankets, or getting a tablet for written communication when nonverbal. In the future, you'll know just what to do.
- Be available, but don’t hover. This can mean anything from sitting silently across the room, to being in another part of the house, or ensuring your phone is well charged.
WHAT TO SAY:
Here are some suggestions for what empowering support might look or sound like:
“I heard ____ passed away and wanted to check in - how does that feel for you?”
"Do you want to talk about what’s going on, or would you prefer a distraction?
“I know self-care has been difficult lately — I’d be happy to wash and brush your hair if that would feel nice.”
“It’s been a while since you’ve eaten — would you like me to make you something? Does anything sound good?”
"I have some time to come by later and help around the house if you'd like - are there any chores I can take care of for you?"
“I noticed the fridge is getting low on food — if you’d like, we can go to the store together, or I could pick things up if you can make a list.”
And perhaps most importantly of all...
"I'm sorry. This is all really hard. I love you and I'm here for you."
FOR CONTINUED READING:
Here are two more short pieces on the grief experience written by neurodivergent authors:
In My Life: A Story of Grief from a Neurodivergent Perspective