When I was about thirty-five, I was scrolling through Twitter (before it was X) and I stumbled across a thread that changed my life. It was about “time blindness.” I’d never heard this term before. However, after reading the description and following it through a rabbit hole of articles, I discovered I’d suffered from this for most of my life.
This was only a year or so after I’d learned the term Rejection Sensitivity Dysphoria. I discovered that through another social media platform.
I’ve since learned many terms from various social media outlets: ADHD paralysis, hyper-focus, and dopamine dependence. Besides learning them online from social media influencers, these terms have one other thing in common.
I learned them from someone who was late diagnosed.
I was diagnosed with ADHD when I was 5 years old. It was 1987 and I was in kindergarten. I was so much of a daydreamer I couldn’t focus on anything the teacher said or did.
I am now in my early forties and have seen many, many helpful videos and read many articles on living and coping with ADHD. I haven’t seen a single one written by someone diagnosed before the age of 25. I’ve seen people as old as 80 getting a new diagnosis, but I’ve never met anyone like me. Especially not another woman.
ADHD is most commonly diagnosed in boys. We know now that it presents differently in girls, and that the most common symptoms in girls are often overlooked because they are socially seen as normal “girl traits” like being chatty, bossy, and daydreaming.
At the time I was diagnosed, my case was very rare. There were a lot of people who believed ADHD only existed in boys and no real studies had been done on girls. The fact that I was diagnosed at all is a tribute to how much of an inconvenience I was to my teachers and other adults in my life.
Growing up, there were no other girls like me. They were all social and popular and seemed to know some secret for moving through the world that I lacked. I couldn’t finish work on time. I couldn’t think or respond as fast as other kids. I was hyper-lexic and obsessed with books and music that no one else knew, but I couldn’t recall a single lesson from that day at school.
I was the weird kid. The music nerd. I’ve been called it all. Daydreamer, space cadet, dumb blonde. I was wasting my potential, not trying hard enough, I didn’t apply myself.
When my son was diagnosed, also around 5, I started studying ADHD again. Tons of new research existed by then, but it was only scratching the surface. I thought I knew what it was like having lived this experience my whole life, but I was wrong. I learned so many new terms and symptoms. There are so many new ways to cope and help. That’s where my real journey began.
His therapists, doctors, and teachers were nothing like the ones I’d encountered as a child. They wanted to teach me about his condition. They taught me about executive function, about accommodation, and how to seek help. My child grew up in a world where he rarely had to mask, rarely had to hide his symptoms. He learned to cope with compassion, not trauma.
But I’m still left out of the conversation. There’s an entire community online of adults with ADHD. But they are late diagnosed. Every time I see a meme or watch a video that describes something about the ADHD experience and say, “Hey, that’s me!” I then see the term “late diagnosed” and my heart breaks a little.
It’s become like a nemesis. A gatekeeper, keeping me at arm's reach from a community where I would otherwise benefit. Where I could be a benefit to others. Because I have ADHD. I have similar experiences to all those other influencers, writers, and bloggers. But because I had those little letters in my medical file decades before they did, I’m somehow disqualified.
I feel like I’ve been kicked out of a club that I started. Not that I invented ADHD or how to cope, but I’ve lived with it my whole life. I’ve survived with it my whole life, with no accommodations, no help, and bucketloads of trauma. But because I was diagnosed at 5 and not 35, I don’t know where I belong.
I know I’m not the only one. I also in no way want to take away from the adults who are just now getting those answers. But I want a part in the play. I can help, I can empathize. I can show up in a way so many people can’t.
I have no idea where to start.
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