Ep 9: Understanding AuDHD: Late Diagnosis and Diagnostic Levels

🎙️ Episode 9: Understanding AuDHD: Late Diagnosis and Diagnostic Levels 

Episode Summary

In this episode of The AuDHD Psych Podcast, Aaron Howearth explores one of the most common and emotionally loaded experiences in the neurodivergent community: late diagnosis. Why are so many autistic and ADHD individuals missed in childhood? Why do diagnoses often come after years, or even decades, of anxiety, depression, or misdiagnosis?

Drawing from both clinical psychology and lived experience, Aaron explains how traditional diagnostic frameworks were historically built around externalising presentations, often observed in young boys. This has left many neurodivergent individuals, particularly internalisers, high-masking people, and those with higher-than-average intellect, unseen by clinicians.

Aaron also discusses diagnostic severity and support levels, challenging the idea that these labels describe fixed traits. Instead, impairment and severity are reframed as dynamic, context-dependent experiences shaped by environment, stress, confidence, and internal states.

This episode offers clarity, validation, and a compassionate perspective on how neurodivergent traits are understood and misunderstood within clinical systems.

Key Themes & Takeaways

• Late Diagnosis Explained - How historical diagnostic criteria centred on visible, external behaviours contributed to generations of missed neurodivergent individuals.
• Externalising vs Internalising Presentations - Why many autistic and ADHD traits remain unnoticed when distress is internalised, behaviours are masked, or difficulties are cognitively compensated for.
• Misdiagnosis Pathways - Exploring overlaps with anxiety disorders, OCD, and borderline personality disorder, and how neurodivergent traits can be misinterpreted.
• The Role of Intellect & Compensation - How higher cognitive ability can obscure challenges, delaying recognition and diagnosis.
• Mood & Cognitive Functioning - Understanding how anxiety, depression, stress, and overwhelm can amplify or conceal ADHD and autistic characteristics.
• Rejection Sensitivity & Minority Stress - How social exclusion and misunderstanding influence emotional experiences across neurodivergent lives.
• Diagnostic Severity & Support Levels - Why ADHD severity and autism support levels are not static identities but reflections of contextual demand.
• Contextual Impairment - How environment, expectations, stress, and confidence influence functioning and perceived difficulty.
• Reframing “Impairment” - Moving away from fixed deficit thinking toward a dynamic, neurodiversity-affirming understanding of challenges.

Transcript

SPEAKER_00 0:10

Hello friends, welcome back to the Audi HD Psych Podcast. I'm Iron Howard, clinical psychologist and human who likes to match my t-shirt to my Rosacea. Um, welcome back everybody. Thank you so much for everybody's comments and feedbacks, for all the likes, all the follows, all subscribes, all comments. We really appreciate it. And I just want to clock that it's been about three and a half months since we released the podcast for the first time, and we are already at around 3,200 listens, and our Instagram following is over 4,000 followers. So thank you all for getting behind us and getting involved in this project. We really, really appreciate it. And if you have a moment, please jump on your streaming network or your streaming platform, Apple Podcasts, Spotify, and give us a rating if you're enjoying what we're doing, and give us some feedback because we're always open to improvement. So, moving along from that one, today I want to have a bit of a chat about late diagnosis and diagnostic levels when we receive a diagnosis. So many, many, many of us are in our 20s, 30s, 40s, 50s, even 60s when we receive our diagnosis of ADHD or autism or both. Excuse me. And a lot of people wonder, how could I have been missed for so long? Because when we see ourselves through the lens of neurodivergent and we see all of the other neurodivergent people around us, we think it's so obvious. You know, I described myself as, oh, I'm just really easily distracted for many, many years, and now I recognize that is such a catch cry for an ADHD. But I guess before I crack on with this one, I'll have a little quick touchback into what neurodivergence is, and in particular autism and ADHD. So while we diagnose based on behaviors, um, what they're probably underpinned by is neurodevelopmental differences. So difference in the way our brains develop andor function. The reason the developmental part is in there is for it to be a neurodivergence diagnosis, we need to see developmental evidence. So early childhood characteristics, which says that our brains are developing in a different way to the average person's. Why does that matter? Because what we're essentially seeing with the behaviors that we diagnose based on is the expression of underpinning cognitive characteristics. So we know that ADHD is primarily a set of behaviors or symptoms that are born out of impulsivity or lower than average impulse control, andor inattentiveness or distractability. And there's some really interesting research out there by uh Rapson Gomez and colleague that suggests that actually the inattention may also be underpinned by a bit of the impulsivity. So there's a nice little bit of crossover there. With the autistic characteristics, there's actually a lot of different cognitive and executive functions implicated there. We look at that, the behaviors we're diagnosing on, difficulties relating to restricted and repetitive patterns of behavior, is the behavioral side, but also those social and communications and emotional differences and sensory differences. So we might be over or under-sensitive to sight, smell, touch, taste, sound, busyness. And those social, emotional, and social and communicative differences, they are founded in different cognitive functions. Language skills is one of the baseline cognitive functions that makes up our IQ. Working memory, often implicated in ADHD, is a cognitive function. Processing speed, often implicated in some presentations of autism, is a cognitive function. And I'm sorry if you guys can hear that noise, there's some banging going on somewhere around me right now. But uh, bang on, I say. So there's cognitive functions that underpin neurodivergence. Neurobrain divergence difference. We just have different brains. Why does that matter in the context of late diagnosis? Well, we diagnose not on those cognitive characteristics, but on the expression of those in specific contexts or certain contexts where they impact on our functioning or they prevent us from meeting our goals. When we add disorder to autism spectrum, it's not autism that is disordered. It's when my autistic rigidity prevents me from being malleable and change the plan, and that impacts on my ability to do my work or study or interact with my social relationships. That's where the disorder comes up. If that impact is not aligned with my goals. And the same with ADHD. Being inattentive is wonderful. My tangential thinking is so helpful in problem solving as I've discussed in the past. But also, when I have to present information to, in the past, supervisors or managers, and I can't stay on topic, that actually is disordered in the context that I have a job to do that I'm trying to do to earn the money and buy the treats, but my tangentiality, my inattention when I'm thinking impedes my ability to do that. So, diagnosis. We're diagnosing behaviors, we're diagnosing inattention, we're diagnosing verbal impulsivity, behavioral impulsivity for ADHD. And in autism, we're diagnosing social and communicative differences, differences in the way I use my body to communicate and those sensory differences, but we diagnose them based on observable behaviors. We don't generally tend to diagnose on internal experiences. Why does that matter? Because whether by biology or culture, biological females and a strong proportion of biological males will internalize rather than express externally those cognitive differences. So we may not engage in obvious behaviors that other people will see, and our normal is our normal. So if we have an internal experience, we may not realize that it's not everybody else's experience to be able to raise it for a clinician to understand what that is. So many of us internalize our symptoms and so we get missed. The higher my intelligence is, if I'm above average intellect or higher, I am more likely to be able to, whether implicitly or explicitly, pick up strategies that manage my cognitive differences. You know, we often still often hear, oh, young ladies don't act like that, or you know, good boys don't behave that way. What we're doing is teaching people to internalize. The more I internalize, the less I'm likely to show the characteristics that are required for diagnosis. Why is everything externalizing behavior in the diagnostic criteria? Because the way the diagnostic criteria have been built is people had difficulties back in the day. You know, it's over a hundred years now that ADHD has been a thing in the scientific literature. In fact, arguably a couple of hundred years, going back to Vicard and attention being discussed earlier. We are talking about it coming to the attention of psychiatric professionals where it causes difficulty, and that's often in the realm of productivity or social interactions. So, schoolyards, you know, the stereotype, the naughty little ADHD boy throwing chairs in a classroom that I always use. That's a classroom impact impacting on a child's behavior where they're expected to sit still and be quiet. And so I only notice the noticeable things. I don't notice the internalizing little biological male like Aaron was, and I don't notice the little girl in the corner who's been told ladies don't behave like that, who has the same characteristics, but is increasing their own stress by internalizing and not expressing the characteristic. And so our anxiety goes up, and we may end up with depression and suicide and self-harm and such. So if the people coming to attention are the ones that are externalizing, then it's usually the most obvious externalizing behaviors that get picked up. So the inability to talk quietly or do things quietly in ADHD, the really obvious restricted and repetitive patterns of behavior. So, you know, that that old stereotype from back in the day of perhaps an intellectually disabled child who also had autistic characteristics rocking backwards and forwards. By the way, I'm a big fan of rocking when I'm not feeling amazing, and sometimes when I am feeling amazing, it's not inherently disorder, it's just a thing. They're obvious to other people and they become linked with impairment in different domains of life. But that also means that if I've grown up in a world where maybe one of my stims is rocking or tapping my foot or whatever the thing is, and my family have taught me not to do that because it's not socially appropriate, I'm going to internalize. You're not going to see my symptoms, I'm not going to receive a diagnosis. So part of the problem is we have diagnostic criteria that are based on observable behaviors from a third party, a clinician, a teacher, and lots of us internalize those characteristics and we don't express them in a behavioural way. But there's more to it than that. I said in a reel at one point, whether it was taken from a podcast or just a reel that we recorded, I don't recall, and that's superfluous information. Ha ha! But what I said was that actually the diagnosis of autism is not the determinant of the validity of you being autistic. Because there's a lot of privilege required to obtain a diagnosis. Not only do I need a clinician who understands my particular presentation or expression of those characteristics, I also need access to that clinician to be in the right area. I also need enough financial or enough means and resources to be able to access that clinician and pay their bills. I also need to have an understanding of what autism or ADHD is to seek a diagnosis unless I'm an externaliser that's coming to attention of other people. If I'm an internaliser, I need to know myself, to know that my normal isn't everybody's normal, to know that my normal fits into what autism or ADHD is, to have access to somebody who can give me that professionally assigned label and to be able to afford to find that clinician and get that label assigned to me. Why does that matter? Because so many of us grow up in families where we don't have the money for assessment. And neurodivergence runs in families. So my normal is probably mum's normal to some degree, and probably dad's normal to some degree, and probably non-binary parents normal to some degree. So if my parents have characteristics and I have the same characteristics, my parents aren't going to notice that I'm, and I use the term very loosely, um, abnormal or not normal. So they're not going to send me off for an assessment. I'm going to see my parents and my siblings as being very similar to me, so I'm not going to notice that I'm different. My internalizing characteristics are going to be missed by both observers and myself. Why does that matter? That's a fine question. What matters now is me finding my notes and finding the next talking point, which has run away from me. So family of origin obviously makes a difference. We need to know that we are autistic to seek a diagnosis if other people don't notice it. We also live in a world where diagnostic criteria are based on external aids and presentations, and historically it was true, it was often little boys because we tell our daughters to act like ladies, and it's the extreme case little boys that were coming to attention of clinicians, psychiatrists, teachers, and so forth back in the day. So there are a lot of issues that lead to me not being able to get a diagnosis earlier in life, and it's not until I'm exposed to other autistic or ADHD or Audi HD people that I start to realize that my normal is actually, it has a name, Audi HD or neurodivergence, and actually I can get a diagnosis and understand a bit more about myself. So then I go off and I get my diagnosis. Why else might we not be diagnosed earlier in life? Well, now we come to the conversation about internalizing presentations and missed or misdiagnosis. Excuse me, and I'll use two examples here. Oh, I beg your pardon, I had a fussy drink a moment ago, and now it's all repeating on me. Miss or missed diagnosis, and the two examples I'll use here are borderline personality disorder and OCD, obsessive-compulsive disorder. Now, these are two very valid diagnoses, two very valid labels that describe very impairing difficulties for a lot of people. However, as discussed earlier on, ADHD is generally the expression of underpinning impulsivity or poor impulse control, and underpinning inattention or distractibility, lack of ability to control my attention in the same way that the average person does. Autism is a social and communication difference that is underpinned by certain cognitive characteristics, but also has restricted and repetitive patterns of behavior and thought. Black and white thinking is a thing that we often see in lots of people on the spectrum. A lack of abstract thinking is some of the characteristics we often see in autism. Sensory differences increase my stress levels. When we look at borderline personality disorder, what we see here is a diagnosis that is also underpinned by impulsivity. We see a lot of suicide and self-harm in people with borderline personality disorder. They are often impulsive behaviors when I'm under emotional stress. We also have a lot of real black and white thinking consistent with autism in the notions of idealization and devaluation of others. You are my best friend, I love you, you are the perfect person while you meet my needs and while you think of me and see me as a good person. But the moment you critique me in any way, we see this real devaluation. You go from being angel to being demon. And this is a gross generalization, by the way, but it's a characteristic that often comes up. Really consistent with black and white thinking in autism. We see lots of excuse me, characteristics. In fact, arguably all of the characteristics that underpin borderline personality disorder can also be underpinned by neurodivergence. Most neurodivergent children, kids, adults as well, we often have an experience of exclusion of being other. Whether it's because I impulsively say the thing that comes out of my mouth when you say, Do you like my new haircut? And I say, Mmm, look like a clown. There's some impulsiveness there, and so I can experience rejection from that. Or maybe you ask me a question and I just give you an honest answer because I don't realize there's social nuance required there. Oh, we don't say you look like a clown. We say, Oh, I might not have got that haircut. If I'm autistic and don't understand that social rule, I'm more likely to be ostracized by my peers and excluded. When I have that experience, I often have an ongoing experience of exclusion, sometimes of bullying. I can end up with complex stress and complex trauma based out of interpersonal trauma. When we look at borderline personality disorder, we really see that there's this, certainly in my clinical experience working with people with borderline, there's this real desire to connect, this want to be loved, but this internal sense that there's something wrong with me. And so I'm constantly trying to grab at people and to be loved and feel included, just like I would if I was a neurodivergent kid experiencing social minority stresses and complex stresses. But then my autistic black and white thinking can kick in if you say something that doesn't align with how I see myself or how I see our friendship and relationship, and then suddenly you go from being the wonderful black thought to the terrible white thought, um, the devil. So if I'm an internalizer and I don't have those criteria, I don't have the expression of characteristics that are listed in the diagnostic criteria in the diagnostics and statistical manual or the international classification of diseases, they're the two really big taxonomies that we use. If you're an internaliser and you don't have those diagnostic criteria because you're not expressing them outwards, there's really no other diagnosis that will fit that impulsivity, black and white thinking, social stresses, the same way that borderline personality disorder will. Now, in no way am I saying that borderline personality is always an Audi HD presentation or a neurodivergent presentation. The point I'm making here is there are many, many statistically more neurodivergent people will receive a diagnosis of borderline personality disorder than the average person in the community. And I would suggest that that's because the diagnostic criteria and the underpinning characteristics of autism and ADHD alongside borderline personality disorder are probably the same underpinning cognitive characteristics and stresses related. Now, another really good example of miss or misdiagnosis that can come up is OCD. Now, there is a lot of OCD in, pardon me, uh neurodivergent people. But I think the real concern here is the misunderstanding between stims, uh, autistic stims, me wrapping my finger around my pen repeatedly, twirling my hair back in the day when I had hair, I had quite long fringe, and I would just twirl my finger around it. It's a self-stimulatory behavior or a self-soothing behavior. It was actually both. Um, my stims can both keep my anxiety a little in check when I'm very stressed. Um, for any of you who watch on video, you may or may not notice that I stim with my eyebrows as well. I learned some years ago to roll it into my facial expression so I wasn't quite as jarring as it is to other people. But the more stressed I am, the less aware of it I am, and the more I do it. But I don't have to be stressed to do it. I can just be sitting there having a lovely day and my eyebrows bounce up and down like they're on a dance floor or a podium. They have a wonderful time, and I'm here for it. The point I'm making is with an autistic STEM, it's not necessarily to manage stress and anxiety. However, obsessive-compulsive disorder necessarily requires an obsessive thought. Often, in my experience, it's a thought that is so grossly misaligned with my personal values, and that thought creates stress and anxiety for me. And then I engage in a compulsion, a compulsive behavior that has the express purpose of neutralizing the anxiety caused by my obsession. Now, my eyebrow example shows that a stim might actually be an emotional regulation strategy as well, but also just has no perceived value to others. Another thing that I do is I audio stim a lot. I will listen to the same delightful song from the uh K-pop Demon Hunter soundtrack on repeat six times last night when I woke up in the middle of the night and couldn't get back to sleep. Like I love the same soothing, positive emotional um sounds. That's an audio stim for me. There is no anxiety neutralization for that. However, if I leave my house to go to work every morning and I repeatedly get to the car and have an anxious thought, I've left the house unlocked, my whole family's fortune is going to be stolen and it'll be my responsibility, and I repeatedly get to the parked car and then go back and check, that is a compulsion in the context of OCD. Now, if I don't understand autistic stims and somebody presents who doesn't have the usual externalizing presentation of autistic stims, and I only see that repetitive behavior in the context of the stress that it can manage, it's a really hard High risk that I'm going to diagnose OCD rather than an internalizing presentation of autism. So the another of the reasons that we are often late diagnosed is because we've been misdiagnosed or our diagnoses have been missed in a correct diagnosis of OCD or borderline earlier in life. And it's not until either we understand or clinician knowledge around us improves to understand the internalizing presentation, which has been happening over the last 10 or 15 years, that we start to see so many more people get becoming diagnosed because we understand the conditions better, we understand our differences better. So the last little thing I'll touch on, and I'll just do it briefly because I'm almost out of time today. Thank you, Imaginary Uma, who's in the back of my head right now, reminding me to finish up. The final thing I wanted to touch on was levels, diagnostic levels, severity levels in ADDHD, and levels of support needs in autism. These are not inherently a part of our cognitive characteristics. These are an interaction between our characteristics and the environment in which we find ourselves and the context in which we find ourselves, and that includes internal and external. So, my inattention. If I work in a bar and I bounce from person to person, maybe I'm a glassy and I clean up the tables and take the glasses back to the bar and I chat to the punters and I chat to the bar stuff. My social butterfly inattention and conversational tangentiality has zero negative impact on me. However, that same inability to go from point A to point B in a sentence or a conversation significantly impacts me if I'm a lecturer and trying to teach fourth-year psych students about ethics of psychology, for example. So, same characteristic, same impact on the way I think, very different outcomes. The environment that I'm in changes the impact of the characteristic and makes it, takes it from being a positive characteristic in a social sense to being a negative characteristic in an academic sense. But my internal state impacts that as well. The more stressed I am, the more likely I am to be anxious and my brain bouncing from one threat to another. So if I'm already a little bit inattentive, that will be amplified by anxiety. If I'm depressed, that can dull down my cognitive functioning. So my ADHD impulsivity might be a little bit lower, but my inattention, my attention itself, I might struggle to pay attention to anything because I'm depressed. So that can amplify my characteristics. So if I was a glassy in a nightclub, I may get a diagnosis of ADHD that's mild, inattentive. But if I'm a lecturer and it's having that really big negative impact across my work and maybe my social interactions, I might end up with a severe ADHD diagnosis. Additionally, if I've got lots of sensory differences that I'm managing day-to-day, and they're taking up 20% of my mental bandwidth, my cognitive functioning. And then over years of being excluded, I have social anxiety. So I go out into a social environment and there's another 20% of my mental energy being taken up. I'm at 40% of my capacity, of my resilience. And then maybe my boss comes in and wants to have a crucial conversation with me because I forgot to finish a task and something just fell down. I forgot to finish a task. So there's maybe 50% now, an extra 10% of my cognitive function is tied up. But then perhaps I am really impulsive and something happens and I jump up and I trip over and I injure myself. Then that pain, that needing to deal with that ties up a little bit more. So I inch closer and closer to potentially burnout if this goes on for a long time, but to my capacity to engage in the day-to-day tasks of life, the less capacity I have, the more support needs I have. So the higher my level of autism is likely to be diagnosed at. If I am a multimillionaire and I live in a world where everyone does everything for me, probably doesn't matter if I have meltdowns at home because the TV is not showing the show that I wanted. But it has a huge impact if I go to a boarding school where I share an environment and that's happening and distracting other people from their learning or creating social difficulties for me and others. So the support needs vary by my context and my environment. So I guess I'll wind up there because we are really at time for today, and I don't want to keep you guys from your lovely lives, but I guess the points that I really wanted to make are why are so many of us late diagnosed? Often because our diagnostic criteria are built on externalizing presentations, and many of us internalize. Because many of us internalize, when those characteristics are expressed in ways that are not covered in the diagnostic criteria for neurodivergence, but are covered in perhaps OCD or borderline as just two examples, I might actually get that diagnosis, and then people think, oh, it's all explained now. But the level of impairment for my diagnosis varies based on my own context, my own stress levels and the stresses in my life, and also the context in which I am, the environments. It's not an inherent central characteristic to me. Disorder and deficit are contextual. So there's nothing wrong with you. There is absolutely nothing wrong with you. You're different, and for all of the disorder and the difficulties that we do have, many of us have great strengths that are born out of our characteristics. So the great thing that I find in late life diagnosis is that now I understand my history. Now I understand that confusing situation where I didn't understand why I was getting in trouble for saying the thing. Now I'm like, oh, it makes sense. I didn't get how other people would perceive that. Or how did I fail year 12 twice and then not go to uni until I was in my 40s? Oh, because I my interest and my attention isn't anchored in the same way as the average person. And I find that so liberating, and I hope that you guys do too. And if you have any examples of how you found your diagnosis liberating, please feel free to comment on our Insta or make a comment online on your streaming platform. And again, if you enjoy our podcast, please leave us a review, leave us a rating. We really appreciate it. And it helps get the word out there that we are different, not less. We are not inherently disordered, we're just different, and that comes with strengths, weaknesses, and neutral expressions. Well, thank you very much, everyone. Have a lovely evening, day, morning, wherever you are. And I'll see you for episode 10, not too s not too far, not too soon. In the not too distant future, we'll call that. Take care, friends.