Welcome to our dream project – a welcoming community built on a simple idea: there’s room in the world for all brains to flourish. If you’re here, you believe that too, or you’re curious about the power of neurodiversity. Or you or someone you care about is neurodivergent. Whatever it is, you are welcome here. Let’s get to know eachother…
The journey so far
Note: our lived experience as autistic people is just one experience, this community is for anyone who has had to work hard against systems that are not designed for them.
I’ll start with my biggest regret as a parent: I let my fear of the unknown cloud my ability to make the best decisions for my child. (We’ll call him “Kiddo”.) Fear will really do a number on perfectly sensible, competent people. It really is the mindkiller.
The unknown: autism. Or at least I thought. (More on that later.) We are four years post-diagnosis for my son, and when I look back on it, I wince at how I wasted the first two. I hope reading this will help you waste less time and jump straight to the good stuff.
Here’s a rundown of what happened over those four years:
- Year one: trying to extract my head from the sand and get it into the game. What the heck did I know? I was a rookie parent, and I didn’t know much, but I did know my child was struggling. His distress and struggles were heartbreaking, and I had no idea how to help. Kiddo was three when we got in line for evaluation, and almost four when it finally happened. If I had a time machine, I would have made that call way earlier.
- Year two: wading through toxic books and advice from “experts”– neurotypical psychologists, therapists, teachers, and (sadly) parents who claimed they could make autistic children “indistinguishable from normal children”. Those were the actual words. (Gross.) I did not go seeking this awful content. The sad reality: producers of this harmful, toxic content have an advantage when it comes to online searches. Clinics and doctors’ offices have a long head start, huge budgets, and higher visibility than, say, an autistic adult who has a blog with a modest following. But that’s where all the good stuff is!
- Year three: finding other parents of autistic children and finally being able to talk about our experience with people who understood and listened without judgment. People who celebrated our wins with us and shook their fists at the frustrations and injustices our kids faced just for being different. They gave me practical advice on how to advocate for Kiddo and navigate the labyrinth of the special education system. Sometimes we cried together.That was the year I hit the jackpot: #actuallyautistic content. Books, podcasts, social media accounts led by autistic people–the real experts on autism. That was the gamechanger. At this point, I had a chance to back up and see with better perspective. My husband and I were also discovering that many of Kiddo’s struggles resembled those of our own childhoods. We now know that had the diagnostic criteria been better back then, we would have been evaluated and diagnosed, too. I was becoming a stronger advocate for Kiddo, and something else was stirring in me: activism.
- Year four: the major shift. Having found autistic voices, I also found a whole different way to see our past, present, and future. While it was daunting to think of how to undo all the damage years caused by the stigma of being different, I also felt invigorated. There are so many neurodivergent people are out there pushing for change: in schools, therapy settings, workplaces, even in families. There are still times when I see the systemic ways in which the world is fundamentally unfair to people like us, and it’s super discouraging. But I also know that nothing changes if we stay quiet and passive.There are plenty of ways we can change the world, big and small. I’ll dedicate a future post to that topic soon.
Until then, know that together, we have a chance to build the world we and our children deserve. So let’s do this!