Labels and Liberation: The Impact of Adult Autism and ADHD Diagnoses
How adult autism and ADHD diagnoses empower individuals, reshaping individual perceptions of labels
“You’ve made it so far. What’s the point of that diagnosis now?”
“Why are you so obsessed with labels?”
“You’re just seeking attention.”
If you’re a Neurodivergent who recently talked about their (self)diagnosis and got one of those replies or a similar one, you’re not alone.
Autism has no cure, and no remedy, so what’s the point of the diagnosis, they say?
If you have ADHD, you may sometimes have it easier, as there are medications that might help you. But even then, some backlash might still come.
There’s still a lot of stigma around mental health and things like autism and ADHD are no different. The effort to raise awareness about these conditions is undeniable, but the journey is still long.
So why do we need “labels”? Why are so many adults seeking a diagnosis now?
If having a diagnosis can come with more stigma than not having it, why is the number of people seeking one increasing year after year?
To find an answer, I interviewed people who got their ADHD and/or autism diagnosis as adults. People who had “made it” on the surface, but who were struggling.
The rising number of diagnoses
According to the Center for Disease Control and Prevention (CDC), approximately 10.5 million adults aged 18 years and older have ADHD in the United States.
Statistics on autistic adults are more scarce. As of 2017, the CDC estimates there are about 5.5 million autistic adults in the US, roughly 2.21% of the population. We know, however, that many autistic people go undiagnosed their entire lives.
A study published in the Journal of Autism and Developmental Disorders in 2019 estimated that 35% of those with autism do not receive a diagnosis before the age of 18. The study was conducted in the UK, so the numbers may slightly be different in other parts of the world.
Despite this fact, the past few years have seen a rapid rise in the number of ADHD and autism diagnoses in adults.
To understand more about the reasons behind this increase, I talked to Heather Wilson LCSW, LCADC, CCTP. She explained,
It’s important to remember that everyone is different and everyone has their own reasons for wanting a diagnosis. For some people, a diagnosis can be an opportunity to better understand themselves and feel more in control of their lives. It can also provide access to specialized treatments or accommodations that they may not have been aware of before.
The process of getting diagnosed can also lead people to meet new professionals, potentially build relationships with others who are going through similar experiences, and access support services they weren’t previously able to access or didn’t even know existed.
The need to belong, to know, to not feel like you’re the weird one out, all push us to seek answers.
I know my reasons for wanting to know. But I wanted to get a bigger picture. As a chronic seeker of answers, I had to learn more. From people who lived it.
Adults who “made it”. Who are successful, have a beautiful career, friends, and a family that loves them. Despite all that, they wanted answers. Here’s what I learned.
Working with ADHD
Kevin runs his own company, Firstly, and was diagnosed with ADHD in his mid-twenties. He had some struggles from early on, but the possibility of such a diagnosis was never considered.
Growing up in an Asian-American household, there was always a stigma around mental health. It wasn’t a topic one simply talked about.
Kevin was a hyperactive child, but an Asian doctor dismissed the idea that there could be something wrong with him, telling his mother, “Illnesses like ADHD are not a real thing”.
The hyperactivity was something Kevin often used as a superpower, too. And it is that superpower that helped him graduate from college and get his first job. None of that was without challenges, though. He told me,
I always had difficulties focusing. I always felt like I had to work a lot harder than other people to do very simple things like, not forgetting I had an exam.
Despite his challenges in school, Kevin didn’t push for a diagnosis at that time. That motivation came a few years later. He explained,
I graduated from college in 2016 and had a really difficult time in the workplace. I worked really hard to get this full-time job during college. And I felt like I was always messing up during my first year. That’s what prompted me to get a diagnosis.
Following his ADHD diagnosis, everything changed for Kevin. The medication played a huge role. In his own words,
I just remember so clearly, when I first started taking medication for ADHD, it was like I had needed glasses my entire life. And I had always seen things blurry. But the moment I took the medication, it just felt like everything was clear. And I had this feeling of like, wow, I wish I had this my entire life because I could have accomplished a lot more.
The positive change didn’t stop there. Kevin’s life took a turn for the better in every way. He went from struggling at his workplace to becoming one of the top performers in his company and was promoted twice in one year.
Was it only the medicine that made the change? Of course, that played a huge role. But for Kevin, there was one other important factor. For the first time, he could work “with ADHD, rather than around it”.
The simple act of knowing
Sara is the CEO and founder of a communication-focused software, designed to create greater context and a centralized point of truth for company information, so everyone at an organization can be on the same page. The motivation for founding the company came from her knowing that only a select few (largely neurotypical) people were dominating the narrative on the work being done.
She grew up in challenging socio-economic conditions and knew, from a young age, that education would be her way out. She studied hard and made a career in education until founding her own company a few years ago.
Sara has a successful career and a very fulfilling life. And yet, something pushed her to seek an autism diagnosis. After struggling to find answers and the right professional, she got the diagnosis in May 2023, at the age of 41.
Being born in the early 80s, Sara’s chances of an accurate diagnosis at an early age were zero to none. She looked nothing like the stereotype everyone had in mind when they said autism — a young boy, socially inept, who will scream and meltdown if you try to talk to him.
She was a quiet child, loved reading, and had one friend. Soon, people around her began noticing she wasn’t like the others. Though of course, nobody said the word autism.
My kindergarten teacher wrote on my report card, “Sara needs to develop her social skills and make friends with more than one child”.
Her learning abilities and passions were well ahead of those of her peers. And that gained her a bit of attention.
I just wanted to read and talk to adults and do all sorts of stuff like that. So they put me in a special learning group. And it was called “Spectrum”. So clearly someone had an inkling, but they didn’t tell me or maybe they did communicate with my family and they never quite translated.
Heading towards adulthood, though, things took a turn for the worse. Sara's home life became increasingly disruptive. Her mother turned to alcoholism, leaving her to become highly self-sufficient at a very early age.
Together with her undiagnosed autism, it wasn’t long before she ended up in therapy. She was diagnosed with OCD, depression, and later PTSD, and tried cognitive and dialectical behavioral therapy, respectively. They helped, but on the way, there were still struggles.
Those struggles showed up in two distinct jobs — one in her early to mid-twenties, the other in her early 30s.
The situation wound up getting so overwhelming, I just like broke down, it was debilitating and I couldn’t work. Because I didn’t know how to manage my symptoms.
Being education-driven, Sara began to dive deep into mental health to try to comprehend her issues. Soon after moving to California and meeting people who were more open to discussing mental health challenges, the idea of autism became more and more ingrained in her mind.
She admits she is at a point where she can pretty much navigate life for herself and her own needs. But beyond the simple act of knowing, she had one more reason to pursue a diagnosis.
I really want to help others. That’s why I stayed in education, why I worked in education. I wanted to help little Saras. And I think people like us, people who are functioning adults in society, with careers and friends, can help those who are struggling.
Some people took the idea of the diagnosis well, while others needed additional education to understand why it was so important. Despite this, Sara is very happy with her decision to pursue a diagnosis and everything she has learned since then.
I thought I was in a good place overall but still learned A TON about myself going through this process over the last 2-ish years that I didn’t know before. I’d really love to find a way to help others more broadly.
Giving it a name
Chris is the founder of Shimmer, an ADHD coaching app. She’s an energetic, passionate person who loves to connect with other people. Despite the fact that her career revolves around ADHD, she was only diagnosed one year ago.
That’s not to say she didn’t suspect earlier. She always had an inkling she had ADHD or something along those lines. But nobody around her encouraged her to get a diagnosis earlier.
While in school and during her first three years of employment, the rigid structures and schedules around her helped. Chris could do what was expected of her. But once that structure was gone all of a sudden, her challenges became all too apparent.
Many seek an ADHD diagnosis hoping the medication will help. But that was not Chris’ case.
I think I just needed to have that certainty and then to have a path, to figure out what I can do about it, how I can approach things.
So, what did the diagnosis change? The most positive for Chris was the knowledge and the power that comes with that. She says,
The most important thing was having the right language to be able to focus and do the research. Since I got the diagnosis I’ve spoken with 20+ ADHD experts, and read so many books. And being able to seek out this information about my brain has been super empowering. I feel like I’m armed with so much more knowledge about myself.
The other thing that helped Chris was the community. It’s a very typical experience for Neurodivergent people who grow up without knowing they’re ND. You feel different but you don’t know why. It can be an isolating and confusing experience.
But when that “different” has a name, it’s liberating. And it can help you find and connect with “your people”.
Chris’ experience hasn’t been all positive, though. Since becoming more vocal about her condition and creating educational content on the topic, she has faced some backlash. Funny enough, most of that backlash comes from people within the ADHD community.
Not everyone thinks people should be open about ND issues. Some are convinced nothing good can come from sharing. They mask and encourage their peers to do the same. It’s a mentality that often comes from negative experiences they themselves lived.
This hasn’t deterred Chris, as she is more determined than ever to make a difference in the ADHD community.
As a conclusion
Growing up feeling like there’s something wrong with you is rough. You try and try but something never fits quite right. Then you reach adulthood, and the divide is ever so big. Is it really autism? Or ADHD? Or is it just in your head?
We’re used to equating diagnosis with something negative. Nobody goes to the doctor expecting to walk out with a paper that says, “Diagnosis: happy”. What follows the word “diagnosis” is always negative. Or is it?
Often, when “autism” or “ADHD” follows after “diagnosis”, it can be empowering. It’s not a cure for all problems. Some face discrimination because of it. But in many cases, the peace of mind it brings is priceless.
It’s the glasses you didn’t know you needed. The guide that can help you navigate the world a little easier.
Maybe it’s time we change our thought pattern when it comes to the word “diagnosis”. Because a label is not always negative. On the contrary. It can mean belonging, empowerment, and peace of mind.
