3 Essential Facts About Adult Diagnosis of Neurodevelopmental Disorders

Finding out I had ADHD, provisional tic disorder, and obsessive-compulsive anxiety at 28 years old was a jarring experience. It felt like everything I knew about my brain was wrong. I knew so little about these conditions (I’d never even heard of provisional tic disorder), yet it turned out they had been influencing every aspect of my life.

All I knew about these labels came from pop culture– a notoriously unreliable source— so I started researching. In this sea of new information, there are three pieces of knowledge that have been essential to understanding and accepting my diagnoses. Whether you think you may have a neurodevelopmental condition, you’ve just received a diagnosis, or you have a friend who’s struggling, here are three things you should know.

We’ve Had These Conditions Our Whole Lives

Getting a diagnosis like autism, ADHD, Tourette syndrome and other neurodevelopmental disorders can change the way we view ourselves. To suddenly discover your brain works differently than what is considered standard can be hard to accept. It can feel life-changing and new, all of which can be overwhelming.

While a diagnosis can change someone’s life in a number of ways, I’ve found it helpful to remember that the diagnosis does not change me. The diagnosis is new, but the state of my brain is not. By definition, neurodevelopmental conditions have their onset before we turn eighteen. While symptoms can change and evolve for any number of reasons, my ADHD and my tic disorder were always there, just manifesting differently. We’ve made it this far with a differently wired brain. A better understanding of that wiring will only make us stronger.

There Are Other Adults Like Us

Because these conditions are most commonly associated with children, finding support as an adult with neurodevelopmental conditions can be challenging. Web searches give the impression that these diagnoses are only meant for kids; most resources are written for parents. The CDC doesn’t even include statistics for adults in their resources for Tourette syndrome. This trend can be isolating, infantilizing, and demoralizing. 

I even encounter this bias at my neuropsychiatrist’s office. The doctor told me he diagnoses the Tourette syndrome Clinical Triad in children all the time and tried to reassure me about my medication by telling me he usually prescribes it to five-year-olds. At a follow-up appointment, a doctor told me that my treatment plan is what she would want to do “if it were her child.” While I understand that most of their patients are children, these types of statements make me feel like the resources I use to address my mental health will never be intended for me, an adult, but rather they will be designed for a child and adapted to me. 

But adults with these conditions DO exist, and they are helping each other every day. You just have to know where to look. I’ve had incredible success connecting with other neurodivergent adults on Twitter. Hashtags like #actuallyautistic, #adultadhd, and #neurodiversesquad are a great start to finding other folks like us who are talking about life as an adult with these conditions. Many of these adults are also writers or podcasters, sharing their stories on websites and personal blogs like this one.

The Shame Might Not Disappear (And That’s OK)

Many adults describe the relief of getting a diagnosis as an adult after years of blaming themselves (and being blamed by others) for being lazy, dramatic, rude, and worse.  Whether it’s autism, ADHD, dyslexia, or something else, the feeling of a weight being lifted seems to be a common theme among adult-diagnosed neurodivergent folks.

I felt it, too– at first. Doctors had suggested my tics were psychogenic, and I started to question whether or not I was making myself tic for attention or to avoid difficult situations. The diagnosis confirmed it was real and mostly outside of my control. 

My initial response to my diagnosis and research on ADHD was, “Wow, this all makes so much sense!” So many of the personality traits with which I struggle are clearly linked to ADHD. I felt vindicated. I wasn’t causing problems; it had been my ADHD all along.

But embracing my ADHD is where I still struggle. It has such a profound impact on how I’ve seen and interacted with the world for the past 28 years. How can I separate that from me? How do I define my personality if not by my brain?

So I still have moments of shame about the way my brain works. I do feel stupid often and like I’m self-sabotaging. I still get embarrassed and frustrated by my tics, and I still blame myself sometimes when I can’t suppress them. Apparently, that’s all normal. Reconciling this new identity is complex and involves a range of emotions, so I don’t need to stress about the fact that I’m not dealing with it the way that I’ve convinced myself is normal. 

Ultimately, none of this is normal. That departure from normal is what makes me a part of this wonderful culture of neurodivergent individuals. Having a diagnosis doesn’t change me and getting my diagnosis as an adult doesn’t make my conditions any less valid. I  know I’ll probably struggle with this aspect of my identity for the rest of my life, but I can live with that. It’s better to fight to know myself better than to deny who I am.

What do you think people should know about being diagnosed with a neurodevelopmental disorder in adulthood? Tell us in the comments!

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