A Story I Shouldn't Have to Tell

"What is a blessing and what is a dream; Caught between portraits and none's what it seems; Why is it people expect there's a change; When I feel I'm a part of something I can't see." - Stories I Tell

When Maisa was a toddler, resisting bedtime and spinning around the bedroom with wild hair and even wilder energy, James looked at me and laughed: “When I married you, I didn’t know I was getting two of you.” Maisa was my mini-me in countless ways. It wasn’t just our physical resemblance — we shared a deep love for the stars, for the outdoors, and for cooking. We are both deeply sensitive, creative souls who have been judged and misunderstood by a world that was not built for us.

Charles Trepany from USA Today wrote this recent article that highlights some of our struggles in trying to find help for Maisa. If you haven’t read it, it would mean a lot if you did — and even more if you shared it. Because, heartbreakingly, our story isn’t rare. Many autistic kids and adults are in crisis. Not only are systems unequipped to care for us, we are too often dismissed, misdiagnosed, and gaslit. There’s a massive gap in both research and understanding. And that gap is costing lives.

After Maisa’s suicide attempt, James and I spent every spare moment researching — trying to make sense of what happened and how to help our child. James uncovered research showing a strong link between autism/ADHD (particularly in people without intellectual disabilities) and suicide. We brought that research, and our theories, to multiple mental health professionals. I discussed it with my own therapist. Instead of being met with curiosity, we were ignored, dismissed, or worse, told that no such link existed. This happened even when we handed over peer-reviewed studies. To be met with that kind of denial from professionals who claim to value open-mindedness, professionals who preach curiosity, was infuriating. Devastating. Deadly.

In June 2023, I read Unmasking Autism by Devon Price. It was a lightbulb moment. I didn’t just see Maisa in those pages, I saw myself. Social anxiety? Check. Preference for predictable environments? Check. Highly educated but often feels like a social chameleon? Difficulty knowing when to speak in groups? Trouble disagreeing in real time? Passionate but shy? Check, check, check. And that was before I even got to the sensory profiles or compensatory behaviors used to survive in a neurotypical world.

I brought all of this to the therapist I’d been seeing for years. She chuckled incredulously. “You? Autistic? ADHD?” Even after I received a formal AuDHD diagnosis (many months after Maisa’s death) she did not include it in my chart.

I’ve been engaged with the mental health system since I was 16. I’ve been pathologized, medicated, and labeled “treatment-resistant” when medications failed — because no one considered the possibility that I was simply wired differently. I’ve been judged by how I present on the outside, while my internal experience was ignored or minimized because it didn’t fit into the expected paradigm. Ironically, my ability to “function” has often made it harder for people to believe how much I’ve struggled, or how deeply Maisa struggled. The human mind wants things to fit neatly into boxes. But we don’t.

I’m not telling this story for pity. I’m telling it because I believe Maisa would want for us to speak out. To be catalysts for change. To shine light in the places where ignorance still causes harm. When people, especially professionals, refuse to question what they think they know, when curiosity is replaced with certainty, people suffer. People die.

If you hold fixed ideas about what autism is, I implore you: listen to autistic people. Really listen. Ask questions with genuine curiosity. Because I have questions, too — questions we all need to be asking:

• Why are we still framing autism as a deficit or “disorder” rather than a difference?

• Why are we using functioning labels without understanding the immense internal cost of “functioning”?

• Why are so many people only being identified once they reach complete burnout?

• What would our world look like if all kids were taught about neurodiversity from an early age — different brains, different ways of communicating, different sensory needs?

Everything I share comes from lived experience and research — and both should count for something. Of course, not every autistic or ADHD person will share my experience. We are not a monolith. But our stories matter. They must be part of the discussion.

And so must the truth that the research itself is evolving. For years, women and minorities have been excluded. Until 2013, autism and ADHD couldn’t even be diagnosed together. Asperger’s was a separate diagnosis. What we’re calling autism today is complex, multifaceted, and still being defined. In my opinion — and the opinion of many others — AuDHD (autism + ADHD) is its own distinct neurotype.

If you think you know what autism looks like, and you haven’t recently had a compassionate, open-hearted conversation with someone who actually lives it — I promise you, it’s not what you think it is. And those of us who appear to be “fine” may be the ones struggling the most in a world not designed for us.

We will keep telling our truth, even when it’s hard. Especially when it’s hard. Because change doesn’t happen in silence. It happens when we dare to question, when we listen deeply, when we speak even if our voices shake. Whether you’re a parent, a professional, someone navigating your own neurodivergence, or a fellow human being on this journey, I invite you to stay curious. Keep questioning. Keep learning. Keep listening. And most of all, keep telling your story.

Just two AuDHD girls trying to find their place in a world not made for them. Note my visor + sunglasses which many people have called my “costume” or “uniform” is due to light sensitivity, a common autistic trait.