When Grief Meets PDA: What My Sister's Death Is Teaching Me About Loss in a Neurodivergent Family

Two weeks ago, my sister, Jess died. She was 40. It was fast, it was brutal, and it was completely unexpected, and I am still waiting for my body to catch up with what my brain already knows to be true.

Jess was my baby sister, but if I'm honest, that description never quite covered it. I was a parentified child, and in a lot of ways I saw her as mine to raise as much as I saw her as my sister. Complicated, I know. But that's the truth of it — we were woven into each other's lives in a way that doesn't have a tidy label. 

So now her absence doesn't just ache, it lands. It knocks me over with real, physical force, usually more than once a day.I go to work. I cry. I drive home. I cry. I fetch my kids, cook supper, sit through reading practice with my eight-year-old, and try very hard not to cry in front of her while she sounds out her words. Jess is there the whole time, underneath everything. I still talk to her. It is nothing — nothing — like getting one of her ridiculous, chaotic voice notes back.

I'm writing this because grief doesn't stay in its lane, and in our house it has walked straight into the middle of three very different nervous systems, and I think there is value in showing what that actually looks like, mess and all.

Three Kids, Three Grammars of Grief

My youngest, Georgia, doesn't fully understand that Aunty Jess is gone. She's said, in the same breath, that she'll miss her and that she's excited for decorating everything for her wake — an Alice in Wonderland-themed high tea, because that was something Jess adored.
I've stopped trying to reconcile those two feelings for her. Children hold contradiction far more comfortably than adults do, and I'd rather let her have both than force her into a single, "appropriate" emotion.

My middle child, Olivia, is autistic with PDA and alexithymia, and their grief is where I've had to do the most careful, deliberate work — both as a mother and, honestly, as a practitioner watching my own field play out in real time in my own kitchen.

Alexithymia means Liv doesn't have reliable access to the names of their feelings. What I get instead is "it feels too heavy." That's it. That's the whole report. And research on autistic grief backs up exactly what I'm watching: alexithymia affects roughly half of autistic adults, compared with a small fraction of the general population, which means the feeling is entirely real even when the person can't locate a word for it. 

It isn't a lack of grief. It's a lack of vocabulary for grief, and those are very different problems requiring very different responses from the people around them.
Liv is easily triggered at the moment, understandably, and I've become something of a trapeze artist — trying to hold three children's routines steady enough that they don't collide with each other and spark a meltdown, while also accepting that some scaffolding is going to have to come down for a while. Liv hasn't been to school in weeks. That's okay. It's allowed to be okay.

The Demands Grief Adds That No One Warns You About

Here's the part I keep circling back to, both as Olivia's mother and as someone who sits across from PDA families every week: grief doesn't just bring sadness for a PDA child. It brings an avalanche of new demands, layered on top of a nervous system that was already working overtime to manage ordinary ones.

Olivia told me recently that they can't eat fruit anymore. It has an expiry date, and the pressure of needing to eat it before it goes off is simply too much right now. I want to be honest about how easy it would be to miss what's happening there — to read it as fussiness, or as a child being "difficult" during a hard week. But it isn't that. It's a demand, dressed up as a piece of fruit, and it is genuinely crippling for my child, both emotionally and physically, at a time when their whole system is already flooded.
This is the bit that catches me off guard again and again, even after twenty years in this field: how many demands I don't register as demands at all, until grief strips away the reserves that were usually enough to absorb them. Getting dressed. Saying the "right" thing at a wake. Being expected to cry, or not cry, or cry at the socially correct moment.

 
Existing in a receiving line of well-meaning adults who all want a hug and a status update. For a PDA nervous system, every one of these is a request for compliance, and every request is a potential threat, whether or not death is involved. Add grief, and the threshold for what tips into overwhelm drops through the floor.

What the Research Says, and What I'm Watching

The literature on autistic grief is still thin, but what exists tracks closely with what I'm living. Grief in autistic people is often expressed differently to non-autistic expectations, and reactions can be delayed rather than immediate, which means the person who seemed "fine" at the funeral may be the one who falls apart weeks later, seemingly out of nowhere. The loss of routine that so often accompanies bereavement can be its own, secondary grief — arguably as disruptive as the death itself, because for many autistic and PDA individuals, routine isn't a preference, it's a regulation strategy.
For PDA specifically, I'd add this: grief itself becomes a demand. The demand to feel something on schedule. The demand to explain what you're feeling when you don't have the words. The demand to participate in rituals that make sense to everyone else's nervous system but not necessarily to yours. 
None of it is willful. None of it is Olivia being awkward on purpose. It's survival wiring, doing exactly what it's built to do, in a time where it has far too much to protect against.

Grief itself is cyclical for all of us — that much isn't unique to neurodivergence. But for PDA children and teens, it can also recur in short, sharp bursts triggered by things that look, from the outside, entirely unrelated. A missed bus. A change to Tuesday's plan. A piece of fruit sitting on the counter. 

All we can do, as parents and practitioners, is take it one demand, one moment, at a time, and resist the urge to make our children's grief look tidier than it is.
I don't have a neat ending for this one. I'm not sure grief ever gives you one. I'm writing this mostly because I know there is someone else out there right now, sitting in their car in a parking lot, or standing over a plate of fruit their child won't touch, wondering if they're doing this all wrong.You're not. You are not alone in this.

Andrea Grant is a SACE-accredited Neurodiversity Facilitator, Autism Facilitator and Coach, and founder of Parenting on the Spectrum.

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