E5 – Diagnosis

Julie Legg and Jel Legg discuss the adult ADHD diagnosis process in New Zealand – what lead them to seek a diagnosis in their 50s, the assessment procedure, and their personal journey.

They share their experiences navigating professional evaluations, uncovering hidden impairments, and reflecting on past behaviors through the lens of ADHD. With insights into the emotional relief and self-discovery that follow, they highlight how a diagnosis offers clarity, improved coping strategies, and a framework for personal growth and better understanding of ADHD’s influence on daily life.

KEY TAKEAWAYS

• Why Seek a Diagnosis? Personal and family-related curiosity often sparks the journey toward ADHD assessment. Symptoms like work struggles, life transitions, or past undiagnosed behaviors often prompt individuals to seek clarity.

• Assessment Process: Diagnosis requires professionals such as clinical psychologists or psychiatrists. Psychologists can assess and diagnose; psychiatrists can prescribe medication. The process involves interviews, trait analysis over a lifetime, and ruling out other disorders. Questionnaires may be included to ensure comprehensive assessment.

• Reactions to Diagnosis: Receiving a diagnosis can bring relief, clarity, and validation – along with grief and anger. It reframes lifelong experiences and provides a new lens for understanding challenges. Diagnosis often sparks a journey of self-discovery, addressing hidden impairments and developing tailored strategies.

• Navigating Adult ADHD: Adults approach diagnosis proactively, considering its impacts and benefits on their personal and professional lives. While traits may not change post-diagnosis, understanding ADHD allows for improved relationships, self-acceptance, and coping strategies.

• Challenges in Diagnosis: Waiting times and the emotional risk of confronting potential outcomes, like ruling out other conditions, can make the process daunting. Diagnosis requires honesty and self-reflection to ensure accuracy.

• Post-Diagnosis Reflections: Diagnosis provides a framework for understanding behavior and decisions. It can help reshape perspectives on past struggles and current strategies, fostering growth. Self-awareness helps individuals identify strategies that worked pre-diagnosis but might need adjustments to align with better outcomes post-diagnosis.

LINKS

Julie is the author of THE MISSING PIECE:  A Woman’s Guide to Understanding, Diagnosing and Living with ADHD (Harper Collins, 2024).

TRANSCRIPT

JULIE: I’m Julie Legg, author of ‘The Missing Piece’ and diagnosed with ADHD at 52.

JEL: And I’m Jel Legg, diagnosed at 55.

JULIE: Welcome to ADHDifference. Today we’ll be talking about the assessment process, our experience of it in New Zealand, and what led us to seek an assessment in the first place. Many qualified people can assess but only for adults, for a diagnosis, it needs to be done through a clinical psychologist or a psychiatrist. What led me to be assessed was … at 52? There was a whole bunch of things going on in my life at that time, but one of them was a family member had been assessed and diagnosed for being on the autism spectrum and I didn’t know much about that at all, and so I just went digging really. Just looking for some clues to how I could understand them better, you know, what lens they’re seeing the world through. And I stumbled upon ADHD … and to be honest I didn’t know anything about ADHD at that time, did you?

JEL: Yes, a little bit. I have step-fathered some children with ADHD, a long time ago now, but that’s more your classic scenario of teenagers … and so I’d been on that side of things, but that was about it really.

JULIE: Yeah, and I guess my only experience had been at high school. ADD was mentioned in passing about sort of a ‘naughty boy at the school gates’ kind of thing, but I didn’t really know anything about it especially in adulthood. But we were watching a Netflix show, ‘Love on the Spectrum’ which is about neurodivergent young people on the dating scene, And, it was then I learned that you could be on the autism spectrum but also have other comorbidities, which sounds terrible but another disorder perhaps on top of that. And then I was introduced to ADHD and I really resonated with some of those characters. Just their enthusiasm for life and, you know, it was the animation and everything was wonderful. So, I started looking at ADHD traits in adults. Lots of searches and everything I read I was, you know, thinking ‘yes, yes, yes,’ to all of the traits. It was quite incredible. So, not only was I interested in finding out if I had the disorder but also autism. Because if that’s in the family potentially, I wanted to check that out. So, I went to my doctor, which is what you meant to do, and I had a very kind, listening-eared doctor, and she nodded and said “Absolutely. Look I’ll see if I can refer you through the public system’ … which was almost impossible to get through. At that time though, I’d come to a bit of a grinding halt, hadn’t I? I had been working in corporate, in a corporate environment, in an office, for a number of years, and I really struggled in that environment. So much so, that I didn’t want to work in that environment anymore. I literally put my foot down.

JEL: In particular, I think … you’d been contracting for years in short-term contracts, and then a certain point came where you ended up at the end of that career working for five or six years in one place … which was something you’d never done before. And, I could see the toll it was taking on your mental health. There was no escape. No. No. You could go back to contracting but the reality is, as one gets older, that contracting can get a little bit more challenging and so you are expected to be in more senior management roles at a certain point in life …  and so that’s what that job would have offered you but of course, over time, you were paying the price. So, that was my observation.

JULIE: Yeah, so there are a number of reasons why I wanted to seek an assessment. And so, my doctor said she would try to get me through the health system and, because I wasn’t working or hadn’t been working for a couple of years based on my inability to move forward, you know … as I said I hit a bit of a brick wall, I managed to at least get a phone call from the public health system. And I wasn’t seeking a psychiatrist assessment. And so the difference is, a clinical psychologist can assess for ADHD, in fact there are many different folk that can assess for ADHD, but a clinical psychologist can diagnose, and a psychiatrist can diagnose and medicate if required. And so I knew, or I’d read, that there was a bit of a waiting list. We decided though that I would go down the path of non-medication even from the get-go, so even before the assessment I was channeling towards a clinical psychologist for that reason … and I got a phone call from the District Health Board … a bit of a screening test and I got in, which was amazing. And, I’m … you know, I feel very sorry and heartfelt angst really for those people on such a huge waiting list. It only took me a couple of months which was incredible. So, I got an assessment through there and it was just around the Covid lockdown so it was done online. There was one opportunity where I could have gone into the office, in a mask, in a windowless office, and I decided ‘No, thank you.’ But … so I was pleased I could go through that process online. But of course with that, an in-person consultation, often they’ll get to see the little traits we might have, like the fidgetiness, or the toe-tapping, or … sort of, tearing at fingernails.

JEL: And the nuances in responding to questions or that moment you can see the eyes. Mine do it a lot … they’re doing it at the moment. They defocus and they start looking into the distance. You guys won’t see this but behind the camera there’s quite a vast view and while you’re chatting away I’m listening and concentrating … but I saw a farmer’s vehicle drive across a track and it’s like, “Where’s he going, that’s interesting” but I’m back again. But yeah, those nuances are slightly lost on a Zoom call.

JULIE: Yes. So I went through that system and it … I waited a couple of months and there were four sessions. And the first session was just a chat and I had the ‘talking stick’, so I just chattered a lot and at the end of that I thought, oh gosh, is … I don’t know, have I … I don’t know, what happens next? And it was fine and my psychologist said “No, that’s great. I just wanted to observe. Next session jot down a few points that you might want to talk about,” and then they’ll start going through the process. And, bearing in mind that they’re not just assessing for ADHD. These are professionals. They’re looking at anything that could explain your traits and how they’ve manifested in your life.

JEL: Two questions on that front then. First of all, how many sessions and how long, and second of all what other traits were explained to you that they were potentially looking for, to rule out.

JULIE: Okay, there were four sessions and each took one hour. Now the last session actually was the reporting hour when the diagnosis, as it happened for me, it was at that time. And we even had some leftover time where we discussed a few challenges that I was facing and there was a few strategies thrown in the mix. But they’re looking actually for … not just that you have experienced them now, or in the last year or so, you’ve got to really demonstrate that you’ve had these traits all your life. So it involves some looking back as a young child, if you can recall, instances where … it might be social situations or in the classroom, or in relationships, or your working career … they’re looking to make sure those traits have happened for some time. And also they’re looking to see if there are any other disorders that might explain your situation. You can’t, even though I’d love to self-assess going ‘I know I had ADHD. I felt in my heart that I did,’ but I had to be very open that it could be anything and/or it could be nothing.

JEL: Okay, so you go through the process and, yep, out the other side, and the diagnosis is there. Life-changing for you.

JULIE: Yes. Yes, it was. And given that I had no real understanding of adult ADHD … actually, after going through that process, that’s why I decided to write ‘The Missing Piece’ really because there was just so much information and I thought it was … it should be available to everybody, in a concise place rather than numerous blogs. And, oh gosh there’s so much information out there. You’d spend months and years trying to find it all but …

JEL: So, you get your diagnosis and you have your own, of course, reaction to that and thoughts and so forth, but from my perspective as your husband, I’m looking thinking “Yep, that makes sense.” And it was wow! So, I only have limited experience of ADHD, as I mentioned earlier, in teenagers a number of years ago. Similar traits, yes. Not behavioural traits perhaps, but certainly the impatience and the mind darting from one place to the next, and the difficulty focusing, and the bursts of energy and so forth. There were a whole bunch of traits I could see there. So that’s pretty mind-blowing. You know, we’ve known each other for 30 years and we’ve been together, not all of those 30 years, we’ve known each other a very long time, and suddenly there’s this diagnosis … which is wow, but I was just so pleased for you. It just made such sense and not for one split millionth of a second did I find myself doubting you, the person I know, or our relationship. Nothing about it. There was nothing that … there was no risk for you, was there. There was no risk that this is going to unveil something that’s going to be challenging.

JULIE: For those that would like tools and treatment for ADHD, medication tools, will need to be through a psychiatrist. What about you, Jel?

JEL: Well yeah, your diagnosis led straight to my diagnosis because, you know, you obviously started a journey of unpacking a huge amount. But, the second I think, perhaps even before your diagnosis, when you started looking into it and going down the process of heading towards a diagnosis, it started triggering things in my mind. Thinking ‘Okay, well that’s interesting.’ Once you were diagnosed I’d looked at the situation and, of course, I learned through you part of the process … I just suddenly thought well there’s no way I can’t have ADHD. I must have ADHD if you have it. Because we’re not exactly the same of course, but in a number of key areas that would define ADHD I felt I didn’t handle them as well as you did. You … I really thought you handled them better than me. It’s just, or perhaps, I felt I was masking more. Slightly … difference in our career of the last say 20 years: you’re in the gig economy and that suited you well. Then you end up in a full-time job. A pretty old-fashioned company. You’re in digital so you don’t have to be in an office and you’re being pulled into the office a lot more than you want to be which is totally unnecessary. You’re on the marketing-end of digital. I’m in the web development-end of digital. So similar careers, similar sort of technology, environment, industry. But for 20 years I’ve not been in an office. I’ve worked at home so I didn’t have that awful trigger of being around people and trying to cope with that. Whilst dealing with lots and lots of people, I could always do it remotely and that sort of remoteness helped me just … if I react to something I just … well okay, don’t fire off an email. Don’t look at someone the wrong way. Don’t start an argument. Don’t have a bad day. Just step away. Have a coffee, little think about it, go back … okay no problem. I’ll do that, sorted.

JULIE: So, you were dealing with things …

JEL: Like a buffer …

JULIE: … in your own time and your own way but it wasn’t as if your ADHD traits had magically disappeared while working from home. It was yeah, it’s just more in private for you to deal with, whereas mine I had to deal with … hours in the traffic, and then interesting dynamics, and a team environment which didn’t quite work for me either.

JEL: And you were fighting tooth-and-nail and I was always trying to encourage you, you know, work from home. Work from home. Go to the office once a week and catch up with people, but most of what you’re doing was a degree of silo working to some extent, so you could work from home. And when I started in web development in the ’90s, which was at the beginning of it, there was this real mad idea that people could work on a beach in Thailand for a company in London. It was the idea of this, and this … even before that, the thing called ‘desktop publishing’ which I just thought “This is what technology is for,” being a technologist, so you didn’t have to drive in your car, clog up the road, find a parking space …  all that, and waste two or three hours a day of your life unproductively. Doing … getting there and then coming home. And so I’ve always been an advocate for working from home. It suits certain industries perfectly. So, I didn’t have that trigger that you had, but as I saw you go through the process, and I realized what was involved, I started thinking “I need to know for myself now.” So, I was working, you weren’t. I was making just enough to keep us/our heads above water, so it wasn’t that we were flush with cash, but I thought … just a simple question, “What’s the cost for me to go privately, just to find out?” Just as a sort of self-development understanding thing. And, I say this with a lot of empathy for people that don’t have money, and we weren’t flush with money, but the cost was I think was about $600 New Zealand dollars and I thought “That’s worth it. I’ll find that money.” So, I just set up a private consultation with a psychologist, not a psychiatrist, because I’m the same. I didn’t want to go down any kind of medication path. Now, it was very similar to how you had described your process, but at the same time, quite different. Yes, mine were the same four sessions of one hour, at the same clinic, but I ended up having to do a really big assessment … a really big questionnaire which took at least an hour, which was designed to rule out other aspects/things like personality disorder, OCD, that sort of thing. And I did go in saying I wondered whether I had a degree of OCD but that got ruled out. The questionnaire was fascinating because … I’ve briefly studied University Entrance psychology a long time ago, and part of that was designing questionnaires that are trying to be foolproof, shall we say. Is that a word … a way a questionnaire that can’t be tricked and then you analyse all the answers at the end using some Chi maths, if I remember or something. There’s some quite good statistical maths that are used at the end so it’s quite hard to fool these questionnaires. Not dissimilar to a personality test. I think … what do you call those tests when you go into a job?

JULIE: Psychometric.

JEL: Psychometric testing. That’s the one. Not dissimilar. So, you get 300 questions and how do you react to us this situation? You know, 5: positively, -5: very negatively. Very quickly I found situations … ‘You’re with a social group and everyone decides to do something you don’t want to do, how do you feel? Very grumpy at that, or okay?’ And I thought, hang on a sec, I wouldn’t be with a social group letting them decide where to go. So, these questions were coming along but … I could see why they’re asking the question, but I thought no, 5 isn’t … is there a 10 or 15? How do I … and where’s the next question, ‘Would you even be with that group?’ No, I wouldn’t. I’ve got my … I would … So, I thought am I going to sort of just fall over here because a lot of these questions I felt weren’t relevant because I wouldn’t be in that situation. ‘You’re at work, this happens.’ I’m not going to be at work. I’m not in that job. I’ve already worked out not to be in that space, so it was a hypothetical answer but then, and this is important, I really worked out what they were doing. It was very clever. They would ask the same question 4 or 5 different ways, with different angles and different bents, and twisting the positives and the negatives. And in the end, you just have to just open your mind up and not think too much. You just have to let it go and trust that something will emerge from this, which is the diagnosis You believe that you’re looking for, or not.

JULIE: Absolutely and this is the thing, it’s up to them to assess you. You can believe all you want about what you may or may not have, but that’s the whole point … that’s why they’ve been training for years. And I think for a psychiatrist it’s up to 12 years, training including, you know, sessions and the rest.

JEL: Well, a psychiatrist is a medical degree, so they’re doctors too. Not to confuse it, a psychologist can have a PhD and be a doctor but it’s not a medical doctorate.

JULIE: Yes, back to the testing, I think that’s really quite interesting. If you were going for a job interview and you had to do a psychometric test, and I have, sometimes it’s a bit confusing because I had my ‘work Julie face’ and then I had my ‘out-of-hours Julie face’. And so if I was asked about … did I enjoy statistics, for example, and I knew that statistics was part of my job, I’d go “Yeah, I enjoy numbers” but actually no, I don’t. I’m not interested at all unless I’m collecting numbers about something that I’m really passionate about. You know, dates and things like that for ancestry. Love it, love it, love it. Yeah, chuck all the numbers in and whirl them about, but at work no, I found that really boring. But again, I was trying to adjust myself to what I thought they needed.

JEL: But you can’t fool the test, that’s the key thing.

JULIE: And with this [your] one particularly, it wasn’t actually work-related. It was for your personal well-being.

JEL: So, the test kind of freaked me out a bit because you didn’t do the test. Your process was more of a cognitive communicational thing. I had that side of it but I didn’t do … you didn’t do the test and suddenly I’m looking at going “Oh, has the psychologist decided there’s a whole bunch of different things here that need looking at? We better rule some things out.” Which would be totally fair enough because I’m not you, we’re different people. If you find yourself in a situation, and a psychologist will give you warning and say “Hey, next week we’re going to do a questionnaire. It will take an hour,” then just psych yourself up and be prepared for it, and don’t get over concerned that you may have answered a question wrong when you think “I should go back to question 86. I should say a stronger feeling on that, or a weaker feeling,” because the questions being asked so many times that behind it is very complex maths that can work out where the real truth sits. They’re weighted in a really clever way, so yeah.

JULIE: Also to note if you were to go to a psychiatrist, for example, bearing in mind that medication is likely to be prescribed at the end of that, you also may have to go through some health checks – blood pressure, you may have some blood tests, you may have drug tests as well. Again, they’re looking at the all of you.

JEL: Yeah, you obviously … there’s no point sort of pretending otherwise, if you’re going for a test or assessment with a professional for ADHD, you must probably think you have ADHD or was a high chance. But I was very much in that camp but I decided I’m not going to try and push this or … you can’t cheat them. You can’t cheat them. Well, if you can then you’re … a very small number of people can do that.

JULIE: But why would you?

JEL: No, you wouldn’t. No but if … I’m not saying that, but if you have a predetermined outcome of what you think something is, and it matters to you, and then you find you don’t have it … well, neither of us faced that. And I’m sure there are people out there that think they have something and they don’t have it. I mean, we all have been to the doctor at some point thinking we have A, B and C and we don’t. So, what I’m trying to say is approach it with a completely open mind and just be yourself. You can’t make something come out of it that isn’t there. I went in with this open mind and I was actually thinking possibly we’re looking at OCD here. I was very interested in that just because of the nature of how I worked over the years in high reliability engineering environments where you really have to be incredibly precise and I thought “Oh, that suits me really well.” I organized my life where my pen is in a certain place. Certain things are in certain places. It looks a bit OCD but no I was nowhere near that. And, I was the same as Julie. Mine was by Zoom, although for the test I had to go into the office with the mask. Oh, that was painful. I spent most of the time looking out the window or … It was very difficult, reminded m of being at school. But after one … the first or second session, the psychologist asked “Write down any ideas you have that you think can help.” That’s when the floodgates opened and I wrote down, “Hey, I do this, this and this. I can’t do this. And I won’t do this and this and this and this. And then, I felt like I was in this sort of safe space to write the stuff down without preempting it. Being asked for it was a big difference. When the psychologist asked you to write those things down, rather than preempting them. A trick I learned years ago: if you go to your car mechanic and say “Look, my car’s got a rattle and a widget’s not right, and it does this, and I think it’s this, can you look at that, and check that bearing?” It’s like … “Hang on, I’m the car mechanic.” Describe the symptoms and then they’ll look.

JULIE: Well, I will agree with you partially on that because I think, actually coming up … sometimes you need time to think of those situations in your past, and in various situations. As I said, work, social, relationships, school even, where ADHD was there. Now some of those things aren’t necessarily easy to just instantly recall when you ask that question and for yourself to go back through your life, and think of examples, I think is good homework too. So, I personally did that when I prepared for my assessment. You didn’t. You waited to be asked. But you’re right, again it’s the assessor.

JEL: Yes, I waited to be asked but I kind of … we’re chatting about this a while ago. I had within a recent period of time, perhaps after your diagnosis, found my old school reports and thought “This is reinforcing my suspicions,” and we’re all different. I just have this ability to recall things very quickly from years ago. The ability to pull in these things and find them relevant. Now, I do appreciate some people would struggle with that. They need to go and sit down for a few hours, reflect for a couple of days “Oh, I remember that,” but I’ve got this just the way my mind works. It’s kind of terribly wired and it can quickly go and find some example of something but we’re different. We’re different. This is the key thing we’re all different. And with the diagnosis … we don’t all go to see the same psychologist. We don’t all go through exactly the same tickity tick process. It’s just our experience, isn’t it?

JULIE: Just a reminder though that they’re looking for frequency. So, you know, everybody can be irritable or impatient at times. With ADHDers, it’s very often. Very often and quite extreme, you know, in many cases which has a different outcome from perhaps a neurotypical that could get impatient and get over it pretty quick and it happens once in a blue moon. So, they’re looking for extremeness but they’re also looking for impairment. Remember, ADHD … while it’s nice to have a ‘nice to know’ diagnosis, it’s actually diagnosed as a disorder because it impairs part of your life with regards to work, relationships, school or social. And so, you know, when we reach adulthood it’s interesting because we’ve kind of brought on board some strategies, undiagnosed, to make sure we didn’t have a miserable life. You haven’t worked in an office for 20-30 years.

JEL: Yes, over 20 and pushing 25 now I think.

JULIE: And so that was your strategy. Now that has … the impact of that has been good for you but it’s meant that potentially there are other jobs that you couldn’t or wouldn’t go for due to that strategy. So, the strategies undiagnosed can be good but also some of them can just be survival mode. They’re not necessarily good strategies. So just because you make it through to adulthood going “Yes, well you know, I’ve got ADHD. It doesn’t look that bad.” Actually, we’ve adapted our lives.

JEL: I like that word impairment because many of us can sit down and say “Okay, it’s worked really well. I’ve had a great number of years, really happy running my business and I’ve loved all the freedom.” Someone else could look at that and go “Well, that’s a huge impairment.” That’s over 20 years of not meeting other people and working in teams, and making friends. And think of all the Christmas dinners I missed out on. All the social occasions. All the team building events I didn’t go on. Think of all the sick days I didn’t get paid for because I’m self-employed, and the holidays I didn’t get paid for, for 20 years. There’s a huge cost involved in that. So, whilst yes, it’s great and it works, absolutely, the impairments are quite significant and they’re hidden. They’re hidden in that you don’t necessarily see them.

JULIE: When you’ve lived with undiagnosed ADHD all your life, what you know or what you see through your eyes, is your normal. And it takes a while and … well, to work out, if you ever do, that your normal actually isn’t everyone else’s normal. I’ve said a couple of times that I don’t have friends. And I have people who are friendly and I’ve got some really good close acquaintances, but I’ve never felt socially connected. It has impacted all through my life.

JEL: So, something I’d like to say, as we’re probably heading towards

the end of this episode with diagnosis, is … Look, straight up truth of diagnosis, the process, there is a risk. On reflection thinking about it, it’s like so we need to … my psychologist, “We need to rule out OCD.” Okay. “We need to rule out personality disorder.” And I remember going “gulp” at that point. A personality disorder? You’re really opening yourself up. It’s a bit like walking into your doctor’s surgery and say, “Okay, right here and right now, I’m feeling fine. Would you please order every test you can find, let’s … I want X-rays, I want MRIs, I want all my organs checked and blood tests, and see if you can find something. Well, a lot of us don’t want that. A lot of us, you know, unless there’s something wrong and we have to go through that process, we don’t want that. We don’t want to walk out saying “Oh your liver’s failing. It looks like you might have a tumour growing somewhere.” It’s like, well great, we can fix it but I came in fine now I’m walking out worried silly, you know? So, that word [personality disorder] did worry me. I’m being honest. That word worried me. And I yeah, it would have been a different thing to deal with had that come back, but it didn’t. And when ADHD came back it just felt … yeah, that diagnosis worked for me and I was able to move on, which is what the next episode’s going to be about is after that magic moment.

JULIE: Yeah, once you know what you’re dealing with it makes it so much easier in so far as understanding why your brain does what it does, and then how that impacts you, that new level of understanding is just priceless, I think.

JEL: So that’s diagnosis really. It’s food for thought really, isn’t it?

JULIE: It’s … and the assessment is the process that you go through and the diagnosis is literally the result at the end of it, whether it’s ADHD, whether it’s ADHD plus something else, or whether it’s none of the above. But the assessment process is an interesting one and I’d say go in prepared, have a wee think about it. Bear with it. Sometimes there’s a very long wait which can be quite anxious.

JEL: I just went and thought of something actually too … perhaps that the crux of this whole thinking process about diagnosis is we’re adults, and we’re talking about adult diagnosis here … anything post-18 where you’re responsible yourself. As a child you don’t get a lot of say in it and you’re just … you’re not really aware of what necessarily what’s happening, but as adults we’re fully aware. We’re making the call. We’re making the choice. We’re looking at the potential impacts of a positive or negative diagnosis, how it can help, or not help. It should help, it should help. So, it’s an adult choice.

JULIE: Yes, it is.

JEL: It is an adult choice and that’s, actually now more I think about it, that’s quite fundamentally what separates us from being a child who’s in … what’s the word, it’s a reactive diagnosis. Whereas as adults they’re proactive diagnoses. We’re seeking them. Cool.

JULIE: And that’s our experience.