Julie Legg and Jel Legg chat about ADHD Awareness Month – a worldwide campaign throughout October, and in its 20th year, driving home this year’s theme is ‘Awareness is Key’.
They explore how ADHD is often oversimplified, noting that it manifests differently for each person. Julie and Jel emphasize the value of self-awareness within the ADHD community and the personal choice involved in disclosing a diagnosis, especially in the workplace. They share hopes for a future where ADHD is widely understood, envisioning a time when dedicated awareness campaigns will no longer be necessary.
KEY TAKEAWAYS
- ADHD Awareness Month Origins and Significance: Celebrated in October, this annual event has aimed to increase understanding of ADHD for 20 years. Julie and Jel highlight how awareness has expanded, but misconceptions still persist.
- Misconceptions About ADHD: Despite widespread familiarity with ADHD, many still don’t grasp its varied effects. ADHD manifests differently for each person, and quick media bites can oversimplify the experience.
- Personal Choice in Disclosure: The decision to share one’s ADHD diagnosis is personal. They emphasize that awareness month isn’t a mandate to disclose but rather an invitation to foster understanding.
- Workplace and Social Challenges: Sharing a diagnosis at work can be helpful but may also lead to misunderstandings or micromanagement, as many employers lack ADHD-specific knowledge.
- Self-Awareness and Community Support: They discuss the importance of self-awareness among those with ADHD and mutual support within the community, recognizing that each person’s experience is unique.
- Advocating for Change: Julie and Jel envision a future where ADHD is as widely understood as other common conditions, ultimately making awareness campaigns less necessary
LINKS
- Julie is the author of THE MISSING PIECE: A Woman’s Guide to Understanding, Diagnosing and Living with ADHD (Harper Collins, 2024)
- ADHD New Zealand
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. In this episode we’ll be talking about ADHD Awareness Month, the month of October. Perfect. It’s a worldwide awareness campaign, we should say, and this year the theme is ‘Awareness is Key.’ So, it’s not just … it hasn’t just popped up. The awareness month has been going for around 20 years. So, in fact it is the 20th anniversary this year, 2024. So, we thought we’d have a chat about awareness and how it has changed since we’ve been diagnosed, and actually beyond that when it all started. So, I would like to give a big shout out in New Zealand to ADHD New Zealand. They’re really the hub of everything to do with ADHD in New Zealand really useful tools. You’ll go to if you’re just starting out and you’ve got a few questions and they will point you in the right direction. They have events, and forums, and webinars, and all sorts of things that are tailored to a certain crowd. Whether you’re parenting with ADHD or dealing with younger children, or just relationship advice. So, yay to ADHD New Zealand. But awareness …
JEL: Strikes me straight away is we didn’t know actually, because we’ve only been diagnosed in the last 3 years or so, how long this worldwide ADHD awareness month has been going, and so then discovering this appears to be the 20th anniversary from what we can see, it started in 2004. That sort of struck me straight away as in the last say five years, there’s been a lot of awareness growing of ADHD. It’s written about pretty much constantly in the press here and in my native UK, and I read the press there every day. There’s barely a day goes by when it doesn’t pop up in some format or other. And there’s certainly been a fair bit of criticism in the last few years that it seems to be everywhere now and exploding. Well, that’s interesting because since the awareness month has been going on at 20 years, it’s not really just the last 5-year phenomenon. It’s … people have been trying to make people aware of it for quite some time. So that’s a little thing I just wanted to say there. It’s not a flash in the pan thing that’s happening now. It’s not a trendy new thing. It’s people who have been working very hard to support people being diagnosed as children and, I would say, potentially quite a lot more diagnoses of adults in those last 20 years, not just the last few years.
JULIE: I agree and also too with awareness, with these articles that you talk about, whether it’s online or on the press, or on the TV, or snippets they … it kind of … ADHD might be a term that you’re more aware of but actually understanding what ADHD is all about takes a little bit more time because it’s a very complex disorder, or difference as we like to call it. It is really complex and you can’t just say it in a 10-second sound bite which is, you know, when it comes to author talks that we both attend and we both have a Q&A at the end of it, there’s still a lot of quite basic information that is still on the very top of the question list, you know. So, it’s not magically everyone’s fully informed and on board. It strikes every generation differently and I think potentially the older generation is still coming to terms with a few misconceptions and yeah.
JEL: That’s right you … yeah absolutely, because I mean if you’re 14 and struggling with ADHD, your lived experience cannot be expected to be anywhere the same as being 74 and living with ADHD, and having lived with it for six decades longer. Each are completely valid and each will have certain similarities because that’s the definition of being diagnosed with ADHD but the lived experience is very different. So, awareness, I mean you could argue, well I doubt if there’s a single adult in this country right now that’s never heard of ADHD. It would be you’d have to almost live on another planet not to have heard that those four letters, the key thing, ADHD. But understanding really what it is that’s a whole different thing. As Jules says, you know, when you often read about it in the press, they’re small bites of information and it doesn’t explain the whole experience or journey for those diagnosed and living with it. Or for those around the people with ADHD. So, there’s lots of angles to this but for me, awareness week isn’t just about us folks with ADHD explaining to other people what ADHD is, and making non-ADHD people aware of it, it’s a self-awareness too. I think it’s becoming as much important that we’re aware within this, I don’t like word ‘community,’ there was another word I was thinking of. Can you remember what it was? [Collective.] Collective. This collective of us folks with ADHD, we don’t all experience it the same way. We aren’t identical. So even an awareness within ourselves of what ADHD is and how it impacts our lives, so we will go out to those without ADHD and try to explain it but it sometimes, perhaps, it may confuse people. You may present to someone “Well my ADHD affects me in this way,” and they say “I know someone else with ADHD but that doesn’t happen to them. They have this, and this, and this. So are you sure it’s ADHD. I mean, how do I understand this when you’re giving me a completely different set of impacts compared with someone else I know?” Because ADHD is not a one-size-fits-all-disorder and we experience it in very different ways. And you know, back to the news snippets, you know, sometimes it’s dramatized, you know. Was that the right term, or dramatic, some major major, major impacts but that’s not for everybody. You know, there are a lot of people undiagnosed and diagnosed that go about their day the best that they can and no one probably knows, you know? And it’s one of those things too, we’re not suggesting awareness means that you have to disclose it, your diagnosis, to everyone. That’s a very personal choice.
JEL: Or anyone. [Yeah.] Anyone. Yeah that’s a key thing. That this month is not a point at which … We are not a collective that all have to stand together and face this enemy. We do not all have some personal responsibility to do our bit and disclose to everyone around us and push this thing called ADHD. It’s very much a personal relationship with it. We do share with … we have shared with family and friends. We’re very open about it. We’re sharing with you, the world. And if people pass our, you know, pass us into our world, acquaintances come and go, if it’s appropriate, if the conversation is the right place to go, we’re happy to share it too. So, we’re making people aware and yes, we advocate for it but we don’t push it on people that aren’t interested. [Yes.] Yeah, so you mustn’t get any sense in this month that you must follow all of us and go and tell everyone. For some of you guys it’s, you want to keep it really quiet and just … and that’s absolutely your right to do that.
JULIE: But, for those that do want to share more information I think what’s really helpful is just correcting some misconceptions or myths about ADHD. We have told some close acquaintances and very, very interesting responses. Some were, you know, as in “Uhhh”, you know, as in “You’re telling me because …?” You know, it was a non-event which wasn’t particularly helpful because we would have loved to carry on that conversation and ask what they know about ADHD and bits and pieces. And others are very intrigued. Others will have neighbours, or a colleague at work, or maybe a friend’s grandchild might have ADHD, and they’ve got lots of questions, which is really good. But again, our traits aren’t necessarily mirrored in everyone else in an identical way. So, bearing in mind if we if we are telling our story, we say this is how we experience it, not this is how ADHD is for everybody. Because hyperactivity comes up I think quite a lot. “But you’re not that hyperactive little boy running around.” No, no we’re not. In my case my hyperactivity is a lot inside my brain, lots of thoughts, very, very busy. And that itself can be quite energetic, and at times it can be very animated and come across that way, but I’m not sprinting around you know. I’m not running marathons or doing anything too overtly hyperactive.
JEL: That’s a question of how it manifests. Yeah. Interesting. In that space I’d say, probably one of the key things that we probably, most of us share, is an overactive mind that won’t settle but it then, how does that manifest? It can manifest in very quiet peaceful things. You may be a great artist painting and drawing and all the time, or you’re maybe a musician. [Hyperfocus is part of that.] Or, a marathon runner or someone who spends a lot of time in the gym getting that out, just to get those thoughts to settle down. Just to get that mental energy sort of just balanced and calming down. So, the manifestation is what’s the confusing thing when it comes to awareness for neurotypicals to understand what it is. So, I think there’s lots of people in your life, and I think one of the most important sets of people when it comes to awareness is probably work colleagues and boss, if you’re lucky enough to be working. I know some people aren’t and I appreciate that but it’s not necessarily the direct close friends you have, the people that ought to understand you. Otherwise, well you would have to question how good a friend they are if you have to hide it from them, unless you choose to which is absolutely fine. I’ve got to keep coming back to that, you know, this is not a crusade, it’s choices. But say you choose to be open and have a close friendship with and trust your friends, you should be able to share it. Different question when it comes to awareness at work because it can hugely help that your boss understands your ADHD, or it can seriously hinder. There is no absolute one-size-fits so as to whether you should share with your work colleagues. There is an increasing amount of awareness in the workplace and certainly in the bigger more progressive companies but unfortunately our country isn’t all big progressive companies. There’s lots of small ones that really don’t have time, energy, or interest in looking at these things.
JULIE: Anecdotally, I’ll just add on the workplace and who to tell, in The Missing Piece a lot of women diagnosed as adults really shared their personal experiences. So, on the workplace side of things they, some found it really helpful and all of a sudden, they … there was some understanding when they were overwhelmed or when they needed some help prioritizing for example. And there were others that felt that it … they were being patronized perhaps, or they were being micromanaged because … and again I think it’s this lack of understanding. Maybe they felt with ADHD that you’re a lesser … I don’t know, you have less capacity or less ability which is completely untrue. We are just as capable as any other living person on the planet, 100%. We just go about things slightly differently and that’s where I think the awareness can really help, you know. Maybe, you know, doing things our way to achieve a task rather than following the standard narrative, which doesn’t quite work for us or we don’t understand why to go the long way when we can take the shortcut you know, in some situations. So, being aware is really cool but again it’s self-awareness too, isn’t it? In the workplace when you go “This is … I’m just not focusing on my on my work. It’s just too noisy,” we have the ability whether we disclose our diagnosis or not, to just ask if we can go into a meeting room and finish things off in peace and quiet. We still have that ability. We don’t need to spill it all, necessarily.
JEL: Yeah. So, when we started our awareness process of course the first thing we do is tell family because it’s, they’re the most important people in our lives. So that’s a process of making them aware and there’s various, none of it was negative in terms of reactions, but there are different reactions that come along. First of all sort of almost non-plus might be there. It’s like “Okay, hmmm.” Well, there’s a bit of processing involved for someone when you have been around for 50 years or more and you suddenly say to family “We do have an official neurodivergence going on here and it’s something that is kind of key to who we are.” They need to reprocess that and over time the questions start getting asked and that’s all fine. But in our experience, we know speaking from ourselves, we did find ourselves using lots of phrases “Oh but we don’t have this bit. Oh, but it doesn’t affect us in this way, it affects us in this way and this way.” So, that is taking ownership and responsibility, how it affects you. And then in that process making it clear to them so, just because you now go and read about ADHD or see a news article on the television about it, doesn’t mean that we fall into that category necessarily of manifesting, of behavior, how it affects us. So that is what I think is this kind of creating awareness, empowering someone who is now aware of us to go out and be a little bit more aware of other people that then present or describe themselves as having diagnosed with ADHD. And that really does still … that is obviously, it’s obvious, it’s the primary purpose of this is for us ADHD people to make non-ADHD people more aware of what/how we live our lives, what goes on for us but I do still personally have this thing that we also should be making each other in the ADHD world a little more aware. Some of us just can’t function with it. Life is a mess. And some of us can function on some levels quite well and … [Extremely well at times.] And we must be … I hate the word kind, but it’s it an important word. We have to also start by being understanding and aware and kind to each other within the ADHD world, and accepting we all have a different relationship with it and it manifests differently, and be supportive of each other. I think that’s my little bug bear, is we need a lot of that in our own world because if we fight each other or be negative in our own world, it’s makes it harder for people outside of our ADHD world to really get a grip of what that we want from them, in terms of understanding.
JULIE: And what could that look like for example? Could it be “Oh well it’s okay for you!” This is two ADHDers having a discussion. “It’s okay for you.” And we do see that going on. Da-de-da-de-da. That’s not quite a fair conversation. [It’s not okay for anyone.] No.
JEL: “The thing is it’s different for you and I respect that, but mine’s like this.” Yeah, and I can understand and respect that and then when we turn and face towards the neurotypicals and we explain our situation: “For this person you’ll find this, for me it’s this. You just need to understand what we have in common is this thing called ADHD. It is a divergence. It is a disorder but you have to just understand that you can’t treat us the same necessarily.
JULIE: Yeah. The other thing, which is quite interesting I …is, I think age because at author talks generally its audience attending generally middle-aged right through to their 80s. We also get younger folk too that are, you know, newly married or just partnering up and have got lots of questions as well. So, but some of the older attendees have … they’re very mystified by the whole thing. They’ve spent 80 years undiagnosed and they’re coming to terms with, you know, that’s their whole life, huge. And they’ve seen a lot of things, and they’ve experienced a lot of things, and they’ve actually managed – whether it was strategy or just gut Instinct, same with us in a way. We’ve managed some of our traits naturally because we had to for survival and for, you know, just to clear our heads. And so for us we’ve moved location, and we’ve moved jobs quite a bit, would have … and friend sets for example, we’ve gravitated towards what would be a happier life for us um. And so a lot of older adults would have done that too. So then, at 80 to go “But I’ve got ADHD but I’m here!” and then to have the GP to say “Oh we’ve made it this far love,” or “You’ve got a PhD. No, I don’t think you’ve got ADHD.” Or, “But you’ve got a successful career, or you’ve managed to raise your family okay,” that’s not particularly helpful. So, it’s not just us with awareness raising, there’s a lot happening too in the medical profession, from psychologists through to occupational therapists, through to the GP, they’re raising their awareness too which helps us. But what I’m saying is that age can have a factor so someone having a terrible time at 20, their ADHD may look slightly different for someone at 70 just purely through life experience.
JEL: Yeah. You touched on a couple of things there. I think one thing that jumps out for me is this word misconceptions. As I say, I don’t believe there’s probably a single human being alive in New Zealand isn’t aware of what ADHD is on some vague level. I challenge anyone to find me someone that’s never heard the expression, you know the term, they just “No, I’ve never heard of that,” it’s impossible, but the misconceptions they’re the things that need tiding up. And, perhaps this awareness month, and for 20 years has been doing this and hopefully we’ll go on for another 20-years, if necessary, I’ll come back to that in a sec, it’s like the misconceptions of where the issues and the problems lay, that’s where the falsehoods of what it is and the assumptions and the judgments made, because of those misconceptions. So, we do have perhaps a shared duty if we’re going to talk about, even if we don’t disclose that we are ADHD ourselves. We can still go into a conversation and say “Well I’ve read that, that’s not actually the case,” you know. That’s … you can input that still without revealing your hand. So that’s just an everyday conversation. Two neurotypicals can have that conversation. Someone who is supportive of ADHD or has an ADHD children or partner, yeah that’s very important. And I … go on yes, I can tell Julie wants to say something.
JULIE: I was … something got me the other day. You know, there are people/adults who will say “I didn’t get child diagnosed even though the doctor said it probably is ADHD. I didn’t want to get them diagnosed because I didn’t want them to have a label that might affect their working prospects. Or you know, I didn’t want them to be hindered.” Now that’s, it was pointed out, that was quite an ableist thing to say because having ADHD is identifying where there is problems but it doesn’t mean your life’s ruined, you know. There is so, there are so many tools and strategies now available. There is medication if that’s helpful or required, but it can be really positive change can come about from a diagnosis. It doesn’t have to be this label and I know that there are a lot of people who may be listening that don’t like a label, they don’t wear it with pride, and they would disagree that there’s a sort of a sunny outlook to come. But believe me, it is there and you’ve got to be willing to adapt and take on some of these changes because yeah there is some sunshine out there.
JEL: Coming back to that wee point I’m going to come back to, [good on you] is, so we had 20 years of this month. I guess, this isn’t frivolous, I’m not being frivolous, I guess if we succeed then it shouldn’t have to run for more than another 20 years. We should get to a point where ADHD is just “Oh well, I’m hard of hearing. Oh well, I’m colourblind.” You’re colourblind, okay well that doesn’t affect anything going on here or, it can affect this. You can’t be a, perhaps you can’t be an electrician with a certain, but hang on it’s not just colourblind full stop. Which colours do you struggle with? Because I’ve worked with engineers, I was an electronics technician and/stroke engineer for many years, where you can imagine all the colours of wires. Colours are really important but you can work in certain environments. Being colourblind you just may not be allowed to work where it involves mains electricity, the stuff that’s enough to hurt you or kill you, but lots of electronics is really safe voltage, is very small and you’d be surprised how much you can work around that. So yeah, if you say “I’m colourblind, that’s the end of the story,” and everyone assumes “Oh okay.” There’s always still a lot of explaining to go on but we may get to the point with ADHD where there should be just a general education coming up over the years where the awareness becomes less important. Isn’t that the end goal? We don’t, do we have, perhaps we have, colourblind awareness week. I don’t know. Perhaps we have hearing impairment week. Maybe we do but again I’d struggle if to find a human that didn’t understand someone who was hearing impaired, surely. So, I don’t know but we’ve got a way to go yet. We do have a way to go.
JULIE: We do, we do, we do, we do. But we’re fully behind this and we would like to say yes, it is ADHD awareness month October, but we’d like to say that it’s ADHD awareness month every month, because everything that can be done, or anything that we can do, just to help normalize the ADHD conversation, has got to be a good one. And, particularly if you’re there to answer questions and to help sort out a few gray areas for people, that’s awesome.
JEL: For us every day is ADHD awareness day. It’s what we live with and it does framework our relationship to everything now. That doesn’t mean it’s a bunch of negative things, it’s just a … it’s a tool, it frameworks our decisions we make and how we go through life and how we relate to situations and emotions that are thrown in our direction. So yeah, go out there if you want, if you feel strong enough about it and either say nothing and do nothing, and that’s fine, or maybe go out and maybe in this one month you have a conversation with someone that yeah raises their awareness. But please I think it’s really important if you’re having that conversation, start from the empowerment on our side and explain to someone who really would like to know but knows nothing about it, it is not one size that fits all. Certain criteria which, I won’t go over again because I always forget them to be honest, but you know, certain criteria do define us having this disorder or difference, and then from then it’s all about the manifesting. And, so when that person walks away from the conversation with you, please, please make sure they don’t have it all nailed, and all ADHD people are the same. It’s a range of things.
JULIE: Yes, and if you’ve got any questions self-education is really good too so if you’re unsure about anything, listen to a few podcasts, read a few books or articles, and just make sure that you know, that you’re comfortable having those conversations because you’re armed with the knowledge that you need. So, thank you for listening and this is ADHD Awareness Month.