The Mourne Wall near Slieve Meelbeg

Mourning Would…

Faced with loss, it’s natural to assume that grief and mourning follow. For many folks, mourning is a process with steps like denial, anger, bargaining, depression, and acceptance. For lots of neurodivergent people, reconciling with loss might look really different. In this post, I’m going to try and relate how I’ve been processing my loss couched with advice for people who care for or work with someone who a) is dealing with a loss; and b) may not present their grieving in a way you might recognize, in the hopes of c) providing more comfort than anxiety.

The last few weeks of blogging have netted a lot of feedback and response on and off the blog. Very recently, I found out a friend and colleague of mine recently lost his wife to cancer, leaving him a single parent with a young child and, to my mind, an unimaginable loss. I’m writing this for him and so many others who are contending with hard changes and tears in the fabric of their lives that can’t be fully repaired, but might be mended and healed with time and attention.

Understand Your Capacity to Process Grief

I wrote how in 2020 I largely lost the ability to speak after months of being isolated (emotionally) within my home. Let’s discuss a little about how that fits in a model for people like me, on the spectrum, and how processing grief might differ from “norms.” What’s important to understand with autism that atop of all the traits people might be able to witness or observe, something silent and unobservable is happening all the time with folks on the spectrum. Autism is, among many things, challenges with processing sensory information, and emotions often carry unexpected mass when it comes to processing them from a sensory perspective.

Karla Fisher of ThinkingAutismGuide.com elaborates:

If you’re on the spectrum, it’s easy to become overwhelmed by emotions because there’s so much more processing happening on just what’s new… our ability to retain “state” information that holds/persists is pretty variable, so meltdowns of various sorts are more likely.

So… when we use so much energy and resources to deal with a flood of overwhelming feelings and we lack the bandwidth/capacity to appropriately deal with them, it’s not just you… the symptoms of your sensory challenges become more severe.

You will have less ability to process information and therefore less ability to be social or to do many tasks, as your executive functioning skills are impacted and compromised. Gaining that capacity back can be come a self-defeating goal that competes with the higher order goal — processing the loss so that it doesn’t tax your capacity to do anything else. As a parent, having gone through this, the idea of having to slow down when people, especially young people, still depend on you… it is incredibly challenging.

What Helps?

I can sometimes cry pretty easy. Sometimes, though, when it seems for everyone else the right thing is to cry, I might just go quiet. For many people who are somewhere on a spectrum, they might not cry or overtly display their emotions. For me, when the feelings come, they come pretty intensely. So, understanding that mourning a loss will possibly manifest itself via increased symptoms (sensory processing issues, limited capacity to be social, forgetting or just plain not having the energy to execute on tasks) will at least brace you (and others) for the supports you might need.

This usually isn’t a challenge for me, but people grieving on the spectrum may be unable to articulate what is wrong or talk about feelings. That thing about being unable to articulate your needs — it’s so difficult to be able to speak objectively with others that isn’t a ramble or word salad laden with emotion. This is one reason why many neurodivergent folks want to work things out alone — so they can process without the judgement and the “tax” that adds to their already loaded backlog of emotional processing. Folks on the spectrum, like me, are often expected to be mourning/grieving and healing to quasi-societal capitalistic expectations. They’re not real. The only thing that is real is the pain you’re feeling and the need to find ways to put down your burden.

Actively engaging in activities and special interests helps with a lot of background processing that exercise Executive Function or Attention without pressuring both… allows for more processing of emotions to be handled while distracting the active mind.

  1. Take care of your body (eat well, sleep and exercise).
  2. Learn about yourself (especially the traits and triggers for your sensory issues).
  3. Spend time doing a Special Interest
  4. Get involved in volunteer projects (focusing on helping others).
  5. Discover/explore something new.
  6. Accept that how you mourn is gonna be different from how others do it (or judge it) and that’s totally ok.

Care and Feeding for Someone Grieving

Three months ago, I lost the only home I ever had for more than three continuous years, a spouse (absent as she was.. this was a big chunk of my identity), two step-children I raised since they were babes, two dogs and a cat (let alone all my friends and neighbors and volunteer activities)… it shouldn’t have been a weird question for someone dating me to ask me “isn’t all that so hard on you?”

It is. I’ve just had to deal with so much of the grieving/mourning of my relationship for *years* already, by myself, that it hit me different when someone who’s just getting to know me has even that much empathy for me. So with that in mind, if there’s someone in your life that’s going through some shit and they’re on the spectrum, here are ways I think you can show up for them that a) they might be able to acknowledge easily; and therefore b) might actually be a force-multiplying comfort — something that soothes and maybe even helps them to heal.

  1. Give them whatever space they’re asking for.
  2. Keep checking that your person is tending to their physical needs (again – eating well, sleeping, and exercising as much as they have the spoons for ).
  3. Ask about their symptoms and how they’re managing them versus focusing on or talking about feelings; keeping things grounded on what’s real and factual is gonna always be more helpful.
  4. Validate their approach to mourning — emotions are happening, but they’re not necessarily a performance art for you or others.
  5. Be patient and present, make it clear with your stillness and presence that it’s ok to take time to process information of ANY kind; not just the emotional stuff — while someone is dealing with processing all these feelings (let alone real world “how do I/we survive this moment?” stuff) — it may take 3x the effort (time, repetition) to process new information, so keep anything new, changes… express them in small doses, simply and clearly.
  6. Encourage every opportunity to dive into a special interest or something new that engages them in exploring something new.
  7. Respect boundaries and needs; if people don’t want to talk about stuff, don’t force it. Likewise, some people are really abhorrent to physical touch, but there are some neurodivergent folks whose sensory challenges almost require a physical touch to “seal the deal” and connect dots, emotionally. If you’re a hugger, ask before hugging and if you’re caring for someone who is a hugger, mind your own energies and consider pulling in another friend who is more comfortable with touch to help.