When Support Is Cut, It Sends the Message That We Don’t Matter

I was driving home when my phone started lighting up. Messages poured in—WhatsApp threads, Facebook groups—sharing the news that the Autism Funding Unit (AFU) was being dismantled and that funding for autistic families in BC would change next year.

I felt it immediately: a knot in my stomach, a deep sadness. It sat heavy in my body before I could even name it. Leaning into my wise mind - I negotiated with myself - the AFU funding hasn’t always been easy to use. Sure, we’ve accessed services and purchased support tools for our kids - but the AFU is slow and tedious to navigate. And, we are among the fortunate few who could stretch to pay out of pocket if we absolutely had to, I know how rare that privilege is. Many families simply can’t.

Still, knowing all of that didn’t settle the feeling in my body. I found myself wrestling with a discomfort I couldn’t quite explain. I noticed myself avoiding Facebook posts and muting WhatsApp chats. Normally those spaces feel like lifelines - places where people get it. But reading about the upcoming changes left me feeling disoriented and heavy, so I pulled away.

And then it clicked.

This funding was never just about the dollars. It was about acknowledgment. It was a small but tangible sign that our kids were seen and that the harsh realities of my family mattered. Losing it doesn’t just change budgets or therapy plans—it lands on an already tender place.

Raising neurodivergent kids can be incredibly isolating and exhausting. It asks more of you than you ever imagined - emotionally, financially, logistically. You become a translator, a researcher, a coordinator, a regulator, and an advocate, often all before noon. Advocacy isn’t occasional; it’s constant. It’s in school meetings, medical appointments, community spaces, and even family gatherings. It’s the quiet work of explaining your child’s needs again and again, and the invisible work of carrying worry for their future while trying to stay present for their today.

Over time, that level of advocacy can wear on a person. You can start to feel like you’re always pushing uphill just to access what other families receive automatically. Just to be seen. Just to be believed. Just to be understood.

So when funding is removed, it is touching a much deeper wound. It is reinforcing a painful narrative many parents already carry: They don’t really understand. Our realities are invisible. Our suffering is too complicated or too inconvenient to hold.

It feels like we are speaking clearly and loudly about what our children need, and still, no one is truly listening. And I think that’s the part that hurt the most when my phone started lighting up on that drive home. It wasn’t only fear about services or supports. It was grief for what the funding represented—a tiny signal that our kids and our families mattered in a system and society that doesn’t understand.

I also want to be clear: Creating broader support for more families is absolutely necessary. So many parents are waiting, struggling, and deserving of resources. This isn’t about gatekeeping support or saying others shouldn’t receive it. It’s about recognizing that expanding support should never come at the expense of families who are already barely holding it together.

For many, this funding isn’t extra—it’s the thread keeping therapies in place, keeping kids regulated, keeping parents from complete burnout. True inclusion means building a bigger table, not taking seats away from those who are already sitting there trying to survive.