Kate Bailey (00:00)
Welcome Queen to another empowering episode of the Play Big Queen podcast. If you've ever doubted yourself or felt like your struggles weren't valid because they didn't come with an official label, this episode is for you. Today we're diving into the topic of self-diagnosis, trusting your unique lived experience and claiming your brilliance, even when society tries to gaslight you out of it.
This is a deeply personal topic for me, and I know so many of you listening have wrestled with the same questions. Do I have ADHD? Is it a real diagnosis? I don't look autistic. Am I really neurodivergent? Can I trust what I feel and know about myself? Do I need someone else to tell me who I am? So grab your coffee and your favorite stim drink, take a deep breath, and let's get into it.
I want to start by sharing a bit of my own story because for me, the realization that I was a multiply neurodivergent or had learning disabilities wasn't something that came out of a doctor's office. It was a journey, a messy, nonlinear, beautiful and frustrating journey of self-discovery that unfolded over an entire lifetime. I first noticed I was different when I was little.
I would stim by twirling my hair since I was a baby. My mom said I used to fall asleep in my crib with my finger stuck in my baby hair. I would look down and literally twiddle my thumbs and be lost in a trance for hours. I used to line up objects perfectly equidistant from each other. I was very verbal, very early. I was hyper-focused on my interests, like obsessive level focused, and I completely tuned out everything else.
I was often in my own world and I would often get startled or angry if people interrupted my time with myself. I got the message early on that my behaviors were off. Teachers would tell me to sit still, to stop being so wild or just to pay attention. And my mom, she wanted to protect me from getting into trouble at school. And so every morning before I left to get on the bus, she would coach me. She would say, don't be goofy today, Katie.
Remember, don't be goofy, don't be goofy, don't be goofy. And over time, between Ma's well-intended coaching and systemic neurotypical social standards, I began to shrink my big, explosive, playful energy, disengage, mask, and get lost somewhere inside myself. Sound familiar? Even back then, I knew I wasn't like the other kids.
When I was in elementary school, I always had my hand raised very enthusiastically in class, super excited to answer a question. Teachers told me to stop raising my hand and to give the other kids a chance. And eventually I was taken out of traditional classes and put in what they called gifted and talented, where I learned basic Japanese and how to do logic problems, but never received help for my learning disabilities. Later on, I would learn that this is called 2E, meaning twice exceptional.
2E refers to individuals who are both gifted, having above average intellectual abilities or talents, and have one or more learning disabilities or other neurodivergent challenges. These dual characteristics can create unique strengths and challenges in learning and development and add to the layers of invisibility in learning challenges or disabilities. My talents that I have tested high for as a child and later on as an adult are in verbal communication,
interpersonal skills and pattern recognition. My pattern recognition and output are exceptionally high, but my processing speeds and comprehension and input are slower than your average. Meaning, if I actually wanted to listen to a podcast where the hostess is speaking at the same speed that I am speaking now, I would have to slow down the playback to be able to follow the conversation. My challenges revolved around needing so much more time to process things.
I'd ask a lot of questions just to be able to understand something. People even thought I was deaf because I would constantly ask them to repeat themselves or say what early on before I understood what was going on with my processing. And don't even get me started on group conversations. I completely lose the thread of topics, especially if they shift too fast and that can often alienate me from having groups of friends where I am included and participating in conversations. Fast forward to adulthood.
I was still navigating and still do navigate these challenges. Being gifted and challenged comes with its own set of unique experiences, especially if you don't understand yourself. I love to learn. I love new information. I info-stim all the time. In my first job where I made a ton of money, I once spent thousands of dollars on a book order because I wanted to read and just consume so much information.
And I spent all this money on hard copies of books only to realize that I couldn't get past the first couple of paragraphs. Unless it was short poetry that was layered and super interesting, the words just didn't stick. I just didn't understand what I was reading. But here's the thing. Once I did understand something, I could teach it better than anyone. That's how my brain works. That's actually how my brain compensates for its learning challenges. I rely more
on long-term memory than short-term learning memory. For something to stay in your long-term memory when you're learning it, you need multiple levels of reinforcement. You need to read it, write it, speak it, and hear it in order for it to stick. So I take the long road to get there doing all of those things, but when I arrive, I own it. It is locked in. When I started exploring neurodivergence, self-diagnosis was the first step.
For ADHD, I remember researching symptoms, using Google Scholar, tracking my behaviors, listening to other people share their experiences. After I learned medical terminology later on in life, it made it easier to understand reading about auditory processing and how it actually works, how there are multiple steps going on between when the sound wave is received in the outer ear to when it is associated with meaning through secondary auditory areas in the brain.
It wasn't a doctor telling me who I was. It was me recognizing myself in those words, in the lived experiences of others, in the moments where I cried with relief because I had access to something that I had been waiting for so long to have access to. You know the same feeling if you've ever watched a video of someone getting like a cochlear implant for the first time or hearing
for the first time, that crying, that feeling of relief and access that you get is so moving. That's where I solidified my identity and the things that I related to, is in those moments of self-recognition and self-validation.
And then later on for the ADHD and the comprehension symptoms, I decided to get tested by a therapist who ruled out other things like bipolar or mood disorders and things of that nature. And through that process, I got covered enough to survive at school and work with the formal ADHD diagnosis. I shared this in my last episode, right? Many doctors in the past indicated that I had markers for Asperger's while I was growing up. And as an adult,
I took autism self evaluations in different places, one in particular at embraceautism.com that was very helpful. The web address is embrace-autism.com if you're interested for yourself. But there were other places that like I took these self assessments and I remember this self recognition and really feeling like I was finally reading a description of myself, but
Ultimately, I didn't pursue formal testing on the autism piece because I think I just learned from the ADHD testing. I knew beforehand and I knew while I was seeing the symptoms and the self-recognition and then I knew after and I got access to school and the accommodations I needed at work and school. And so I really didn't feel like I needed to do the same for the autism piece. feel like now knowing is enough.
Now, let's talk about the elephant in the room. Self-diagnosis is often dismissed or invalidated. I've had people even close to me question my self-diagnosis and my formal diagnoses, especially people who are not actually educated on all the different presentations in autism, ADHD, and specific learning disabilities, people who assume that to be autistic, you need to be non-verbal, and to have ADHD, you need to be
bouncing off the walls, which is just not accurate. But here is the most important piece of that. Those people who questioned the validity of my formal diagnosis or my self-diagnosis, they weren't living my experience. I know what it's like to struggle with small talk, to feel socially different, to mask my traits just to fit in or survive.
I know what sensory overload feels like, what it's like to have meltdowns as an adult because the world is just too much, too overstimulating or moving too fast. And I know what it's like to not have equal access to work opportunities or education because I just couldn't do my homework and read and understand the material enough to be competent in a subject. Again, I went to six different colleges without a formal diagnosis and kept failing out without having the accommodations.
And it wasn't just the education I missed out on. It was the connection. It was lonely because so many people made so many assumptions about my character. That I was lazy, irresponsible, annoying, that I wasn't trying hard enough, that I didn't care, that I was fucked up or wrong or defective in some way. And I started to believe them. But not only do I know what it's like to have the neurodivergent lived experience with all the good, bad, and the ugly.
but I know that they're wrong. And I also know this, self-diagnosis is valid because it's rooted in the individual lived experience. Look, a formal diagnosis can be helpful and sometimes it's absolutely necessary in order to be included or get practical equal access to education or employment opportunities.
I went through the formal diagnosis process for ADHD again because I needed a non-stimulant medication to manage anxiety that comes with my particular brand of ADHD, which is combined type. Combined type ADHD, if you don't know, means I have both hyperactive and inattentive traits. And the hyperactivity is greatly reduced when I take certain medications, usually medications for anxiety. And if you're unfamiliar with the nuances of the ADHD diagnosis, because...
being late diagnosis requires that we catch up on a lot. But ADHD is labeled as a neurodevelopmental disorder, where during the development of the nervous system, which consists of the brain and the spinal cord, the brain develops differences in brain structure and activity, particularly in regions of the prefrontal cortex, which is responsible for executive functions such as planning, decision making, and self-regulation.
or areas of the temporal region of the brain that affect auditory processing, or the amygdala, which is located within the temporal region and plays a large role in our ability to regulate our emotions and anxiety. Some people argue that ADHD is trauma related, and there's like this whole discourse around basically a chicken or the egg type of theory, but the gist of it is trauma and ADHD symptoms can overlap because both cause changes to the brain and being neurodivergent
As an individual navigating ableist systems and structures just can be inherently traumatic. But ADHD has a genetic factor where early trauma can exacerbate symptoms by further disrupting brain development in areas linked to ADHD, like the prefrontal cortex, amygdala, and hippocampus. Now we could have a whole other episode about the distinctions between trauma and ADHD, but there are a lot of trauma coaches out there in the...
coaching industry that dismiss the ADHD diagnosis and just say that all ADHD is trauma and that's just not accurate. It largely has a genetic developmental component and if you're listening to this and you're a trauma coach and you've made this argument in the past, I would just recommend strengthening your practices around neurodiverse affirming communication. But I digress.
As much as learning all of this and getting formally diagnosed has helped me get access to the things that I want or need to survive in the adult world, like education and occupational opportunities, it did come at a high cost to get diagnosed, both financially and emotionally. And the truth is, we live in this ableist society that just wasn't built for neurodivergent brilliance or differences.
Educational and workplace systems are designed for a neurotypical average, and if you fall outside of that, you're forced to sacrifice so much just to survive. Some women put off having children so they can continue staying on their medications for ADHD and go to work. Some people force their bodies and brains to do things that just don't feel natural for them to be included, like sitting all day when their bodies need to move more. But let me say this loud and clear. Outside of an ableist system,
we wouldn't need diagnoses or labels at all. We could just exist as ourselves without medication, without justification, without explanation, without having to fight for basic accommodations in a truly inclusive society. We would all just be people with different ways of doing things, different strengths and different weaknesses and different levels of support needs. I claim my diagnosis, whether self-diagnosed or formal,
because they give me access to the same opportunities everyone else has. But at my core, I am not ADHD Kate, I am not autistic Kate, or even multiply neurodivergent Kate, I am simply Kate. As a coach for neurodivergent women in business who are entrepreneurs or professionals or leaders, I see so many neurodivergent women struggling with the same things. Burnout from over committing, perfectionism and chronic anxiety,
feeling like they need someone else to validate their experience. And let me tell you, Queen, you do not need permission to trust yourself. Autonomy, sovereignty, self-trust, self-belief, our concept of ourselves, our self-worth, our self-esteem are some of the biggest points of healing work that we have to do as a neurodivergent person. Imagine for a moment
that there is nothing wrong with you, that the problem isn't you, it's the world we live in. You are brilliant, your perspective is needed, and the system might make you feel like you are going crazy, but that's because when we get all the way down to it, the system is threatened by your power. So here's my advice if you're struggling to trust your lived experience. One, acknowledge and validate
your feelings. You're not lazy. You're not making this up. Two, challenge internalized ableism. Ask yourself, would I ever say this to someone else who feels this way? Three, listen to your body. Your body often knows before your mind does, whether it's fatigue, overwhelm, or anxiety. Let it speak in its own language and let it be enough. You don't need a reason if you don't trust someone.
You don't need a reason why something feels off to you. Trust and listen to your body. And fourth, but definitely not last, find your community. Surround yourself with people who get it. Support groups, online communities, or trusted friends can really make all the difference. Remember, you don't have to justify your experience to anyone, not even yourself. Your knowing is enough.
Queen, I wanna leave you with this. We need your brilliance. The world needs your unique perspective. Self-diagnosis is not about labels, it's about understanding yourself so you can thrive. So trust yourself, trust your journey, and most importantly, never shrink because people with less life experience don't get you. You don't have to prove anything. You just have to keep playing big.
