Sophie Hulet

Adult ADHD Diagnoses, and Why it’s Important to Talk About Them 

by Sophie Hulet 

A couple nights ago, I was flipping through YouTube, as one does, and I came across a video by the YouTuber Markiplier in which he reviews different fidget toys. These toys are commonly used by people with ADHD, because they provide satisfying sensory stimulation which can help the user decompress, remain focused during a presentation or conversation, or otherwise contribute to mental harmony. Having ADHD myself, I thought I would take a look, since I only own one fidget toy myself and was wondering what else was out there. 

In the video's introduction, Mark mentions that he was diagnosed with ADHD at age 20. Hearing that information triggered an instant level of understanding, prompting me to think about all the experiences we probably share. This is different for me than how I connect with someone who was diagnosed with ADHD when they were a child; I would even go so far as to say it's deeper. I share common symptoms and day-to-day experiences with the wide majority of people with ADHD, but those of us diagnosed as adults often share a history--a lonely history, one of growing up without a diagnosis. 

When I was in elementary school, I was acutely aware of the ways in which I was different. "Not like other girls," as they say, but not just because I turned out to be nonbinary. All I wanted to do was talk, and I was not very good at listening. I often got in trouble for talking when I wasn't supposed to in class. I had a difficult time making genuine friendships. I was aware that my emotional reactions seemed extreme compared to my peers, who I thought of as having an easy time 'staying calm,' and I didn't know why. I was generally a messy worker and player. I spent much of my free time daydreaming and coming up with fictional worlds that my classmates didn't always understand, but somewhat tried to respect (I remember one girl writing in my 'birthday book' that she 'hoped I got to become Daisy Rainbow,' a fairy persona I made up and wrote 'books' about). I was a diligent reader and writer, but struggled with art projects (often times not even finishing), and getting upset that even though I was trying my best, others were doing better than me seemingly effortlessly and getting praise for their skills where I was not for my efforts. This developed into the notion that I should quit anything I was not immediately good at. I excelled in reading and writing and wrapped my identity firmly around my academic success in those areas...which eventually became a problem. 

All of these things are typical indicators of ADHD in 'girls.' However, since my intense perfectionism was academically beneficial at the time, it wasn't seen as an issue. My verbal disruptions did occasionally get me in hot water, but my behavioral deviance in the classroom typically manifested as daydreaming--nothing a teacher would have known about or brought up to my parents (in contrast to the constant physical restlessness and fidgeting typical of hyperactive type ADHD, more commonly diagnosed in boys, and often punished as disruptive to the classroom). My social struggles and the bullying I experienced were never really connected to any of their root causes, just an overall 'quirky' social style. Generally, all of the things I mentioned in the last paragraph were disconnected from one another and explained through any means other than a neurodivergent brain.

I don't blame anyone in my life for this. After all, we are socially conditioned to think of ADHD the way it typically presents in 'boys.' It is only recently that heightened awareness of the influence of gender on the manifestation of ADHD and autism symptoms began making its way into general public understanding. I would go into more depth about how my experience of gender and ADHD now is different than how it was then, but that's a story for another day. The point is: I was atypically atypical. Kids who fit societal ideas of what it means to have ADHD are more likely to get a diagnosis than kids who have less common or understood symptoms, for whatever reason, and/or kids with intersecting marginalized identities. 

There's another, darker reason why many people with ADHD go undiagnosed until adulthood. It has to do with when their symptoms become a large enough 'problem' in the eyes of society. Like I mentioned earlier, kids whose inattentiveness leads to pacing or fidgeting get labeled as disruptive early in their experience of institutional settings (such as school). Most of my prominent symptoms are given more of a pass by society during childhood, but take on a heavier social taboo during adulthood. The backlash we get from our communities, schools, and workplaces impacts when we (or our parents) would sense something 'different' and begin to seek a diagnosis. The timeline of diagnosis has much to do with when you are the most othered, the most alienated, the most rejected, the most seen as a nuisance to the natural order of things. This is not only true for ADHD, but for many other types of neurodiversity and chronic conditions. We must grapple with this if there is ever to be disability justice. 

Why is it so important to talk about adult ADHD diagnoses specifically? I think back to memories of conversations between my parents and other adults that I overheard as a child.

"Practically everyone has autism these days," these adults would tell my parents, the parents of an autistic child, my little brother. "It's an epidemic affecting our children. Can all these diagnoses possibly be real?" Even then, even when I was less than 10 years old, I could read between the lines. I never thought that there was anything wrong with my brother, because aren't epidemics bad? Aren't you supposed to try to stop them?...Do these people think autism is bad? As an adult, I look back on that time and recognize the surge in that sort of rhetoric, the rise of Autism Speaks, the skepticism surrounding the increasing rate of diagnosis. What I've noticed is that in the past few years, the same thing has been happening--this time with ADHD. 

What people have failed to recognize in both these instances is that the rate of diagnosis is rising because increased awareness of the symptoms of autism and ADHD are leading to adults who the system missed seeking diagnoses. Those adults were the "kids who didn't have autism/ADHD" of yesteryear. In particular, medical bias has led to the under-diagnosis of ADHD in certain groups, including women and others of marginalized gender identities. The invention of the internet and more universal availability of high-quality medical information has led many adults to realize on their own that they might have ADHD. They are then able to initiate a dialogue with their medical teams, empowered with language to describe their experiences, instead of spending the rest of their lives waiting for answers in an often lonely state of limbo. 

I got my diagnosis when I was 19, but only after an extreme episode of burnout, exacerbated by the onset of a chronic illness, that lasted years in high school. The sudden realization that I could no longer get by simply by 'winging it' with my good informational memory and willpower alone was coupled with the crushing reality that the foundations to get the support I needed were not in place. I used therapy to vent about how depressed and anxious I was all the time, and most of my therapists' efforts went towards helping me cope with that depression and anxiety rather than digging deeper for the root causes. I went without therapy for a while after I was cut off from my pediatric therapist by my insurance when I turned 18. I panicked, desperate to pull myself together before heading off to college, and started to do some research, beginning with how to manage depression and anxiety. After a couple quarters of college and some pandemic introspection, I realized I had the causal relationships flipped: something was causing me to struggle with getting through school, in turn causing depression and anxiety. Before, I had been operating under the assumption that my depression and anxiety simply occurred suddenly and were the primary causes of my struggles getting through each day. They were secondary causes, to be sure, but after hearing others share their experiences with ADHD, I decided to bring it up with my new telephone therapist. She thought it was a definite possibility, and the long diagnostic process began. 

My ADHD diagnosis cleared away much of the fog that had clouded my perception of myself since I could remember. It was not the final piece of the puzzle; I was concurrently attempting to get answers for physical symptoms that could not be explained by ADHD, and my eventual ME/CFS diagnosis would take a little longer to acquire. Regardless, it allowed me to forgive myself for all the time I spent believing I was defective, failing, obnoxious, high-maintenance...all the ways I blamed myself for not fitting the mold. It is necessary for the medical community and society at large to examine why people are not getting diagnosed until adulthood and think critically about the reasons the rate of diagnosis is currently rising. We must recognize that not all people with ADHD are the same or had the same childhoods--and actually

implement changes to ensure fewer people have to go so long without access to support and accommodations. 

Most of all, however, I wish I could go back and sit at lunch with the child who just wanted to be heard after all the other kids got up and moved away from them; I want to tell them that their sloppily-glued sunflower art project looks beautiful; I want to hug them as they cry, frustrated over getting in trouble for talking out of turn twice in one day; I want to listen to their stories about fairies and tell them that someday, someone will want to read what you write; someday, you will treat yourself with gentleness; someday, the thunderstorms in your mind will fade into the background and you will reach the closest thing you've ever had to peace.