I Thought I Had ADHD For Years, Until an Autism Diagnosis Changed My Life

If you've stumbled onto mental health TikTok, you've probably come across videos listing out traits and tendencies that could mean you have ADHD. Depending on who you ask, this can be a good thing. Not only does it normalize and de-stigmatize ADHD, it also may help vital information about a frequently underdiagnosed condition reach the people who need to hear it, says Judith Joseph, MD, a practicing, board certified psychiatrist and researcher and clinical assistant professor at NYU Langone Health, known popularly as Dr. Judith on TikTok.

However, with the rise of these online conversions, more people are also misdiagnosing themselves with ADHD when they actually don't have it — or when something else is going on. Dr. Judith notes that she's had more and more referrals lately with people showing up for ADHD medications who turn out not to have the condition at all.

"That's why we have a stimulant shortage," says Dr. Judith. "The shortage is related to people being overdiagnosed, as well as logistical and production problems with the drugs. Online discourse… fosters that because people were self-diagnosing, especially during the pandemic."
However, just as receiving a diagnosis when you need one can be life-changing, a misdiagnosis can be too. It can mean you're not getting the tools and help you need if there's another underlying condition, or you're receiving improper treatment for a condition you don't have. To better understand this, we talked to one woman who believed she had ADHD for years, only to realize something else was actually going on with her mental health. Here, Janet Beatrice, a 63-year-old from Massachusetts, shares her story with PS. — Molly Longman

About 20 years ago, when my son was about 4, his teachers called me in and told me to think about testing him for ADHD. That led me to read a book called "The Out-Of-Sync Child." I ended up recognizing myself in a lot of what the book was saying. One thing in particular it talked about was how people with ADHD tend to have executive functioning issues. I really identified with this. For example, I can make up a plan and write it down, but I have trouble executing it. I have clutter everywhere on my desk that I'd love to clear up — in theory — but I don't know where to start. Anyway, I was pretty convinced after reading it that I had ADHD.

Maybe five years later, I finally went to a psychiatrist. I told him, I think I have ADHD, and he said: "Well, ya got something." I was really put off by that response, so I didn't go back to him — I wish he would have been less cavalier, so I could have trusted him to get to the bottom of what was happening in my brain. But I gave up for a while. Seven years after that visit, I was still having the same old struggles, so I finally went to see a different psychiatrist. I told him: "I seem to have ADHD, but I'm not hyperactive." He seemed puzzled. I was puzzled too. We had a few sessions, and he said: "No pressure, but do you want to try Ritalin?" I went for it but it didn't have any effect at all on me. I stopped taking it and still was struggling in my day-to-day life.

Then five years ago, someone from church sent me a message and she essentially said: "You seem kind of quirky — did you happen to know that women with autism are often misdiagnosed or undiagnosed?" She sent me an article about autism in women, and I thought: "Wow, this me," even more so than when I read the ADHD book. A month later, I was lucky to be able to go to a neuropsychologist who gave me a provisional diagnosis of autism. She said the reason it was provisional was because you have to talk to the parents to get an "official" diagnosis, but my parents had already passed away.

Getting that diagnosis was life-changing. It helped me understand myself for the first time. For so many years — decades — I was struggling deeply with executive functioning issues, but no one knew what to do with me, and no one was talking about how autism could affect this. It felt like ADHD was the only explanation but no one looked deeper, and I didn't know to do so. I wish there had been more information then like there is on YouTube and TikTok today — there are a lot of people on there diagnosing themselves with autism or ADHD. That means people are probably misdiagnosing themselves sometimes, like me, but I think the more people are talking about neurodivergence and the more information that gets out there, the better.

It took me a couple of decades after recognizing I had these executive functioning and sensory issues to figure out what was really going on. And then, here it is right in front of me: a diagnosis that makes sense out of so many things in my life, especially from my childhood, when I struggled to make friends and fit in.

Knowing about my autism sooner could have made such a huge difference in my life. Having the diagnosis helps me feel less guilty about my shortcomings, and less shame about social struggles and faux pas I've made since childhood. I wish I'd had it as a kid so that I could understand why I was the way I was. For years, I really wanted help and I didn't know how to ask for it or where to get it.

People often say about mental health: "Why do you need to put a label on it?" But, I say, you can't address it if you don't know what it is. It's not for "the sake of" having a label, it's because if you have a label you can learn exactly what's happening and learn tools to help make your life more manageable. I've also been able to learn from others online in the autism community for solutions to things like social struggles at work, and to just feel less alone.

This interview has been condensed for length and clarity.

— As told to Molly Longman

Molly Longman is a freelance journalist who loves to tell stories at the intersection of health and politics.