Ep 24 AuDHD Experience - Late Diagnosis & Identity reconstruction

🎙️ Episode 24: AuDHD Experience - Late Diagnosis and Identity Reconstruction

"After a lifetime of feeling wrong, broken, like a weirdo, along comes late diagnosis — but that's the doorway, not the destination."

In this episode of AuDHD Psych, Aaron explores late diagnosis and identity reconstruction for autistic, ADHD and AuDHD people — why so many of us are found so late, and how we rebuild a sense of self afterwards. Drawing on the research and his own experience, he unpacks why late diagnosis is the norm rather than a personal failing, how internalising presentations and masking keep us under the radar, and why our diagnostic criteria, built around externalising behaviour, miss so many of us for decades. He looks at the double feeling of diagnosis — relief and grief arriving together — and at diagnosis as something that confirms who we already were rather than changing us. He also handles the borderline personality disorder pathway carefully, as a frequent misdiagnosis and conceptual overlap rather than a relabelling, while naming the stigma that does real harm.

Takeaways:

• Late diagnosis is the norm, not the exception — being missed for years is what the research predicts, not evidence that you were ever fine. You weren't missed because you're not neurodivergent; you were missed because you didn't present the way the criteria expected.
• Our diagnostic criteria were built around externalising presentations in academic and clinical settings, creating an observation bias — so people who internalise, the author included, fly under the radar until the science catches up with the lived experience.
• Masking hides our characteristics, and higher masking predicts later diagnosis — the more we mask, the less we show up against the criteria. That same effort drains the cognitive and emotional energy we need for daily life, pushing us toward burnout, overwhelm, anxiety and, for some, depression and self-harm risk.
• Masking carries a heavier cost where we're raised to be "socially acceptable," which is part of why we talk about masculine and feminine presentations when we really mean externalising and internalising ones.
• Many neurodivergent people — particularly those raised as girls — receive a borderline personality disorder diagnosis before autism, ADHD or AuDHD. The two can genuinely coexist, but it is often a missed or mistaken identification, and the unfair stigma attached to BPD others people even further and makes things worse.
• Late diagnosis is frequently cathartic and a relief, and at the same time brings grief for what could have been and anger at having been called lazy, chaotic, "too much" or "not enough." Holding relief and grief together is not contradictory — it's the normal shape of finding out late.
• Diagnosis or self-identification doesn't change us; it gives us a framework to understand ourselves through that isn't only deficit-based. Compared against a neurodivergent frame, the "typical" person would look deficient too — it's difference, not defect.
• Identity reconstruction is gradual, not instant — we reconfigure our sense of self over time, find ourselves reflected in community, and integrate our emotional history, coming to see our characteristics as a source of strengths as well as struggles.
• Reflect on a characteristic you associate with deficit — say impulsivity — and look for where it has actually served you: a leap that brought adventure, curiosity that fed creativity or research, pattern recognition that made you brilliant with systems. A balanced, true view of yourself is the foundation for rebuilding who you are.

Transcript

SPEAKER_00 0:00

Potty potty potty potty potty potty potty potty potty potty potty potty pod podcast Potty potty potty potty potty potty potty potty potty potty potty potty pod podcast We love an audio stim and self-acceptance it's the Audi HD Psych Podcast. After a lifetime of feeling wrong, broken, like a weirdo, along comes late diagnosis. But what next? Hi friends, welcome back to the Audi HD Psych Podcast. I'm Aaron Howard, Clinical Psychologist, and we are different, not defective. Today we're going to have a look at late diagnosis and identity reconstruction. We'll have a little bit of a look at the research, we're late diagnosed, how we're late diagnosed, what goes on there, what happens for a lot of people with late diagnosis. And this is looking at research across autism, ADHD, and the limited Audi HD research that's out there. And then how do we rebuild ourselves over time? And then we'll have a little practical part at the end. So I'll be referring to my notes today. I don't like to hide that because there's nothing wrong with outsourcing our working memory. So many of us, many of you listeners out there and myself, we're late diagnosed. We haven't been picked up, and often we wonder why. So diagnosis is the doorway to understanding ourselves in terms of knowing the construct that we fall under, autism, ADHD, or Audi HD. Pardon me, and identification does the same job, self-identification. It's not the endpoint of where we're going, and it's not the endpoint of how we feel good about ourselves. Often we were missed because we don't present in the way that was expected. So we've discussed this in past episodes. Our diagnostic criteria are really built around externalizing presentations, often in academic or clinical settings. So if my particular presentation of my neurodivergence didn't stand out to my teachers, stand out in social settings, or lead me to being in clinical settings seeking help, then often I wasn't noticed. Then when I've done the research on all of the people who fit the diagnostic criteria, I've got a biased sample of what neurodivergence can look like because I've got that externalizing bias, the observation fallacy. And then everybody who doesn't externalize, myself included, we tend to fly under the radar for many years until the science catches up with the actual experience. So late diagnosis is the norm. It turns out that of adult neurodivergent folk, the vast majority of us have been diagnosed in adulthood. Why is that? Probably because of that internalizing presentation that I just spoke about. As I look at my notes here, late diagnosis is 13% of people between 20 and 24, and 80% of those of us who are over 40. So it's a lot of us are diagnosed later in life rather than earlier. And that tells us that the uh the diagnostic criteria have only picked up a small set of neurodivergence. What has stopped us? You know, I say internalizing presentations, what does that mean? I think we've already talked in a previous episode about masking and burnout and the risks, and I touch on and I draw a lot of past episodes into today. So masking hides our characteristics. If I'm impulsive but I'm raised in a world that says young ladies don't act like that, then I'm culturally taught to internalize that impulsive behavior, to internalize saying what I'm thinking without filtering it, because there are social repercussions, there are punishments for me to externalize. We are taught that we pay attention when people are speaking to us. So we internalize that there's something wrong with us for not paying attention, and we mask that we work really hard to pay attention. Letter diagnosis actually predicts higher masking, and the more I mask, the less likely I am to show up in the diagnostic criteria. So there's a relationship between masking and late life diagnosis. So if you're diagnosed in your 30s, 40s, 50s, 60s, it's likely that you're pretty high masking. As discussed previously, we know that all the energy that we put into masking takes its toll on us. It wears us down. Piece of my cognitive space, my mental space that I'm using to suppress the impulsive behavior or the impulsive comment, to force my attention to be on track for a period longer than it's created to be or it's functionally able to be, or to hold my face in the way that's socially acceptable. Or to perhaps communicate in the way that makes the most sense for you. That's all energy that I don't have or that I'm putting into this creating a false self that I'm putting out to the world. Why does that matter? Because we raise our young daughters to be socially acceptable, so there's more stress for biological females as a very general rule in masking than there is for biological males. Probably why we refer to the masculine and feminine presentations, when really what we mean is the externalizing and internalizing presentations. But yeah, there's more stress involved for all of us who mask. We're putting energy into trying to fit in and feel safe that we're not putting into our daily lives, our jobs, our social connections, things like that. Why does that matter? Because the more I mask, the closer I get to burnout, the more energy that I don't have to put into the things that are my pragmatic necessities. Work, getting about during the day, living my life. So the more predisposed to burnout I become. If I burn out, I'm more likely to feel overwhelmed. Probably feel overwhelmed that's led to burnout. I'm probably anxious, that might lead to depression, and that might lead to suicide and self-harm concerns, which we do often see. Now, if I'm creating a false sense of who I am to the world, that impacts on how I see myself because we construct our identity based on our experience and the rules that we internalize by the people around us. So if I'm constantly putting up a false version of me to the world around me to try and fit in and feel safe, then I'm very likely to not develop a confident understanding of myself and who I am and experience identity disturbance. Now I've spoken in the past about the overlap between borderline personality disorder and the characteristics that underpin autism and ADHD in the context of interpersonal stress and trauma, exclusion, bullying, feeling a sense of other. And there is a strong overlap there. Many neurodivergent people are primarily neurodivergent biological females, but many neurodivergent people receive a diagnosis of borderline personality disorder before they receive a diagnosis of autism, ADHD, or AudiHD. The two things, neurodivergence and borderline personality disorder, can coexist. However, often it is a miss or missed diagnosis of neurodivergent characteristics. And then when we think about ADHD's emotional impulsivity, the rejection sensitivity that we talk about in community, autistic rigid thinking, the mental health concerns I just spoke about that can be led to by burnout and masking, and the impulsivity that we see in borderline personality and the identity disturbance that we see in borderline personality disorder. We can see how many people have those missed or misdiagnoses. Why does that matter? Because borderline personality is unfairly a stigmatized diagnosis. I don't think there are many people in the Western world who hear borderline personality disorder and think, oh, that's my favorite type of person. Because we have untrue stereotypes about people who are diagnosed with that condition. But if I'm already feeling excluded, impulsive, have mental health difficulties as we see in borderline, and you stigmatize me even further and other me even further, then the systems around me, the societies around me, are making things worse for me. So I have a situation where I'm trying to fit in to feel safe, that impacts on my identity, and it it minimizes my opportunity for being correctly identified as neurodivergent. Then I get to late life diagnosis. What happens then? For many of us, it's a really cathartic process. For many of us, it's a it's a relief. For a lot of us, there's grief around what could have been and what is because I wasn't identified earlier. And for a lot of people, there's a lot of anger at the world around us for not having noticed this, for having misidentified who and what we are, for having called us lazy, unmotivated, chaotic, too much, not enough. And that's natural. And if that's your experience, then honestly, you're not alone. There is the relief in being able to see ourselves as not alone, as not other, as not the bad person that I've been made to feel like with a label like borderline personality disorder. There's the grief of I briefly thought when I got my ADHD, received my ADHD diagnosis, I thought to myself, what could I have achieved if I'd been diagnosed in school and hadn't failed high school? What could I have achieved with my life if I had actually got gone well in high school, gone straight into uni, and then lived a life, a full life as an educated professional doing what I love now? But I luckily temper that with, I've had so many good experiences because that wasn't my path. I joined the Navy and it cost me a lot, but I also had so much fun and I had so many stressful but positive experiences through that. And it taught me a lot about myself and the world. And that would never have happened if I'd been diagnosed early in life. So don't get me wrong, was going out drinking too many nights a week when I was a young sailor great for my career and my broader well-being? No, it wasn't. But do I have some really solid friendships and relationships and skills that I learned through that time alongside those difficulties? Absolutely I do. And our identity reconstruction process post-late diagnosis, we can often get caught up in the what I don't have because society has told us that neurodivergence is deficit and disorder. But I'm here to say that that's not my experience and it's not the whole truth. There are difficulties that come with our characteristics, and there are difficulties that were caused by them. But there were also great strengths, uh great positive, great joys that come with them also. And having that balanced view sets us on a path to understand ourselves in a balanced way and accept that we're human, imperfectly human, which all humans are. We have difficulties, we have strengths, and that's okay. That's that is normal. So as I glance down at my sheet to see what was the next point that I wanted to talk about, diagnosis for some people tends to confirm our identity. We felt weird and different, and you know, I've spoken in past episodes about how somewhere around 13 or 14, I had a friend, we'll call them Rob because that's their name. Rob, if you're out there, you know who you are. And they were they were a delightful weirdo, and it was their comfort with their difference that taught me that my weirdness wasn't that terrible as I'd thought it must have been because I didn't fit in with everybody else. They taught me to be comfortable with being odd or weird or different. And so I learned to love that about myself while still having anxiety about how other people saw it really early on. And for many of us, diagnosis confirms what the weirdness was, what the difference was, and that actually it wasn't me being a bad person. It was just me being different in a world that expected sane. And in that world, I wasn't taught how to manage my differences and the difficulties that associate with it. Because 90% of the people in society don't have those, so I don't see how they manage them. Therefore, I inherently have less skill, less opportunity to manage those difficulties, which leads to often poorer mental health and well-being, greater significant difficulties, more masking to try and fit in, more burnout, more mental health difficulties, and it becomes a cycle. This is true in autism, this is true in ADHD, and there is much less research in Aud, but it's likely to bear out to be true there as well. We do see that most of the literature in this space is in autism, with some in ADHD, and we just have a few Audies coming through now. So newly diagnosed adults also reported major positives coming out of their diagnoses. And in one study, none regretted their diagnosis. That's not everybody's experience because we still have this internalized stigma about our diagnoses. But this is in this one particular study. And having relief about understanding myself and grief about what might have been is not contradictory. It's not another thing to feed into the, oh, we're not really one thing, we're not really another. It's natural we can hold two conflicting emotions at the same time. So I'll just turn my page, shall I? How do I rebuild my sense of self? How do I reconstruct my identity? Or for some people, the experience is how do I learn who I am? You know, I've said it in the past, our diagnosis doesn't change us. We are who we are. Our diagnosis can give us a framework to see ourselves through. Or if we don't have a formal diagnosis, that identification, self-identification, can give us a framework to see ourselves through that's not only deficit-based. Society looks at neurodivergence as deficit because that's the typical frame that we're compared to. We're expected to do typical things. But if we compare the average person in society to a neurodivergent framework, then the typical person is the one who is deficient or perceived to be disordered in that context. But actually it's just differences. We are different, not defective. There are some processes that we can use to reconfigure our notion of who and what we are. We can find ourselves through the diagnosis, we can find ourselves through others, and this is why I love the idea of community so much, because the research bears it out. It serves disempowered groups well, it serves othered groups very well. Because instead of feeling abnormal, when we associate with people like ourselves, we start to feel normal. We feel like we fit in with the group. And as mammals, that's how our species has survived for so long. So we we want to do that. So we find ourselves through others, we see ourselves reflected back by. Now I understand the Wedding My Pants story from grade two. Now I understand the power of me impulsively joining the Navy and the positive influences that's had on my life. Or the the negative choices I've made, where I've made investments that haven't worked out well for me. Or where I've started a dog walking business that worked out really, really well for me. All of my characteristics have contributed to strengths and weaknesses. And when I only focus on the weaknesses or the difficulties, I'm seeing myself through the lens of deficit. But when I also look at where I've gained strength from my neurodivergent characteristics, then I'm seeing a balanced true view of myself. And I start to reconstruct a true version or true understanding of the person that I actually am. So ADHD identity, uh, autistic and ADHD identity is interesting because both neurodivergent are particular arbitrary clusters of characteristics, I would argue. They have different post-diagnosis outcomes, in that in one study that I was looking at, ADHDers were seven times more likely to refer to themselves using negative language like lazy, stupid, don't try hard enough too much. So likely a reflection of the way society sees impulsivity and inattention and the motivational difficulties that we see in ADHDers and ADHDs, as opposed to cognitive rigidity that we often talk about in autism can cause difficulties, but can also be a real strength. We don't often uh talk about the strengths of ADHD in the general community and top uh popular media. Unfortunately, there's a smaller research base for ADHD than there is for autism, but arguably the uh the conversation around neurodivergence and our experience leading into diagnosis and after diagnosis are going to be remarkably similar because we're all disempowered or marginalized groups. So the emotional integration, as I've discussed, is that being able to understand my past experience and being able to externalize it from not being me being a bad person, but me being a person with a set of skills that weren't aligned with what the environment demanded of me. And it's that misalignment that caused the difficulties for me. Different, not defective, we're not broken. We were in environments that required us to lift the heavy thing at the gym when we have the body that I'm born into that uh I you know I describe myself lovingly as a stick figure. So we start to understand ourselves better, we start to integrate our emotional experience, and we start to see ourselves reflected back in others like ourselves, which normalizes our experience. I will plug one more time. Find community. Finding community in whatever way works for you. Online communities, neurodivergent groups. I love the notion of silent book clubs. The find your way to interact with people like you. And that identity reconstruction is likely to be more realistic and serve you better than sitting alone with the idea of deficit and disorder and reinterpreting your history and yourself through that lens. So I guess the final thing that I'd really like to say today is that there's nothing wrong with us. We are different, not defective. We are neurodivergent, and our lives come with strengths and weaknesses because of our differences. Understanding what our strengths are and looking at our characteristics, as I gave the example of my impulsivity before, and where have they played out in my life for better as well as for worse? Where have they caused difficulty? And where have they actually made life better for me? And I'll ask you to do that. Have a think about the characteristics that you associate with the deficit that you may have been diagnosed with, let's say, impulsivity. And are there times in your life where that impulsivity actually led to something really, really great? Did you impulsively after high school go backpacking for six months and meet amazing people? That's impulsivity, that's curiosity that is underpinned to some degree by motivation to go, the impulse to go overseas. Did are you a researcher? Did you have an idea that made no sense but then turned into a really good research project and really good academic paper? Are you somebody who just has an interest in what's around the corner and that brings joy and value into your life? Are you a creative whose inattention, whose associative thinking means that you create beautiful artistic works that other people really resonate with that the average person might not have seen? Are you someone whose pattern recognition or whose way of doing routines and processes, that cognitive rigidity we talk about in autism is also beautifully suited to processes and procedures. No, we do it this way because it's efficient and we don't deviate from that. That makes systems work really well. Where have your perceived disorder and deficit in your characteristics, where have they actually served you? Well, I'll leave you with that note today, friends, but thank you so much for listening again. I'll see you. Well, I probably won't see you, but you'll hear me or see me on YouTube next time. And remember, we are different, not defective.