When You’re Autistic, Grieving, and the System Doesn’t See You

TW: pregnancy loss; infertility; medical trauma

There’s a peculiar kind of silence that wraps around pregnancy loss. It’s an uncomfortable disclosure, even when it’s necessary. And often people don’t know what to say in response.

The first time I experienced this, I felt so alone. We were out of town visiting friends, and after a couple of days finally was convinced to go to the ER. We left our son with them, and I tried to keep it together. I didn’t realize this capacity for masking would prevent me from being taken seriously by the doctor. I didn’t realize it would ripple out and affect my marriage. At the time, I didn’t have the context or clarity of my neurotype, and I suffered in the silence and misunderstanding.

But now I know. Now I can see that through no fault of my own, I lacked self-knowledge, awareness, and understanding that might have helped me advocate for myself and also helped me feel understood by the doctors. Now I am coming to see that it’s possible I was misunderstood, disbelieved, and treated like my pain wasn’t real because I didn’t express it the “right” way.

Photo by Devin Avery on Unsplash

A little late night reading (and heartbreak)

I stayed up late last night reading a study that put into words what so many of us have felt but rarely see named: how care during pregnancy loss often fails autistic mother—and especially those of us with layered identities. It left me feeling heartbroken, seen, and angry all at once.

I’ve never encountered a paper like this before. The study, led by an autistic researcher and supported by a team that included autistic individuals, explored the perinatal loss experiences of 67 autistic adults in the UK. Some had experienced miscarriage, stillbirth, or other kinds of pregnancy loss.

But what stood out to me was not just what the participants shared, but why they often didn’t or couldn’t seek care in the first place.

Nearly a third of participants never accessed healthcare at all after their loss. And for many in this study, the reason wasn’t apathy—it was fear. Fear of being treated badly for being autistic. Fear of not being believed. Some didn’t even know they were allowed to seek help “so early.” Others worried their grief wouldn’t be seen as valid. Even when people did access care, it was often traumatic. This was profoundly relatable to me—I felt so dismissed the first time that I haven’t always sought supportive, consistent care, even when I desperately needed it.

Many in the study described healthcare professionals as cold, dismissive, or entirely unprepared to communicate with someone who is autistic. For those who were overwhelmed or nonspeaking in the moment (a state often called a “shutdown”), consent was ignored. Pain was misunderstood or ignored altogether. Only four people in the study had anything positive to say about their care. (Are you with me? FOUR out of SIXTY-SEVEN.)

And there’s more. The authors wrote that autistic people are less likely to disclose their diagnosis for fear of being stigmatized (a fear that is often justified). They shared that even though the sensory environment of hospitals is often overwhelming for autistic people, it wasn’t the main complaint in this study. Why? Because the interpersonal trauma of not being seen, heard, or cared for came first.

It’s not just about autism—it’s how the system sees us

Reading this study felt like sitting with 67 other parents who were saying things I’ve said quietly to myself after appointments, after scans, after being dismissed again and again.

I’m prone to crack jokes and make small talk in hard situations—not because I’m not scared, but because it’s how I stay afloat. I’m masking. But doctors don’t always see that. They see someone who’s “coping,” not someone who’s asking for help.

And then we layer that with being a little “quirky,” in a bigger body, and Indian. With having a history of trauma. With a documented history of not experiencing or expressing pain and discomfort in a typical way. (Hello, interoception.) I’ve spent most of my life feeling like I have to perform grief and pain correctly just to get basic care.

What many providers don’t see is that humor is often my lifeline, especially in emergencies. I grew up with a father who was in and out of hospitals for 15 years. We all cracked jokes to get through it. Sometimes they were dark, twisted quips masking the pain and bitterness. Sometimes jokes offered a distraction. Sometimes, humor uniquely enabled us to connect with one another in the midst of all this pain.

We’re overdue for a change

How many of us have been told, “you're fine,” when we weren’t? How many of us have had to become experts in our own bodies just to be believed? How many of us grieve while also masking?

How many of us have cried silently in the car because enduring the appointment felt worse than the loss itself?

If you’ve been through something like this, whether you’re autistic or not, I see you. You deserve care that meets you where you are, not where someone else expects you to be.

In this paper, the researchers made important recommendations: better training for staff, clear and direct communication, asking open-ended questions like, “Is there anything I can do to make this easier for you?” They also suggested offering appropriate pain relief even when someone doesn’t “look” like they’re in pain and highlighted the need for support networks and peer communities, especially those led by autistic people themselves.

None of this should be revolutionary—but apparently it is.

Photo by Biegun Wschodni on Unsplash