E25 – ADHD New Zealand + guest Raewyn Heays

Julie Legg chats with Raewyn Heays, national co-ordinator of ADHD New Zealand. They discuss the organisation, how it all began, along with the information, events, and services they co-ordinate and offer the growing ADHD community in New Zealand.       

Since 1979, ADHD New Zealand has grown into a vital resource hub, offering screening tools, educational content, active Facebook support groups, and regular webinars on topics like nutrition, anxiety, and ADHD in girls. Through memberships, donations, and grants, ADHD New Zealand provides essential support, including low-cost “Ask an ADHD Coach” sessions. Raewyn shares insights on the rising demand for adult and women’s ADHD resources and highlights the organization’s advocacy work with government and healthcare agencies to address the evolving needs of the ADHD community in New Zealand.

KEY TAKEAWAYS

  • Role and Growth of ADHD New Zealand: ADHD NZ, originally a self-help group, has grown significantly since 1979, evolving into a comprehensive resource hub under Raewyn’s coordination since 2019. The organization primarily relies on donations, memberships, and grants, with Raewyn as the only paid employee​.

  • Resource Offerings: The organization provides a variety of resources, including a self-screening tool for adults, a healthcare directory, educational videos, articles, and tools for both adults and children with ADHD. The website’s adult self-screening tool is a high-traffic feature, reflecting increased interest from adults seeking ADHD assessment​.

  • Community Engagement: ADHD NZ fosters community through large and active Facebook support groups for adults, parents, and partners. These groups allow members to share information and experiences, reducing feelings of isolation for those on the ADHD journey​.

  • Webinars and Courses: Regular webinars cover diverse topics, from nutrition and ADHD to anxiety management and ADHD in girls. Members can attend these webinars at a discounted rate, and courses are offered on parenting, teen anxiety, and more​.

  • Ask an ADHD Coach Program: The organization offers monthly “Ask an ADHD Coach” sessions on a donation basis. These small-group sessions provide members with direct access to trained ADHD coaches, covering topics specific to adults, teens, and children​.

  • Increased Demand from Women and Adults: Raewyn notes a shift in inquiries, with more adults—especially women—seeking information about ADHD assessment, reflecting a growing awareness and reduced stigma around adult ADHD diagnoses​.

  • Financial Memberships: Financial memberships support ADHD New Zealand’s work and allow members to access discounted webinars and courses. Membership fees are essential for funding as ADHD New Zealand does not receive government support​.

  • Advocacy and Outreach: ADHD New Zealand engages with the government, media, and community groups, using surveys and community feedback to advocate for ADHD awareness and better support systems. They are now consulted by agencies like Pharmac on ADHD-related matters, indicating a rising influence​.

LINKS

TRANSCRIPT

JULIE: I’m Julie Legg, author of The Missing Piece and diagnosed with ADHD at 52. Welcome to ADHDifference. In today’s episode I’ll be chatting with Raewyn Heays, national coordinator of ADHD New Zealand. So welcome Raewyn. Thank you so much for joining me today. [Thank you.] Well the … no, you’re most welcome. It’s ADHD Awareness Month of October, so what a perfect time to talk to yourself the national coordinator of ADHD New Zealand. You would have had a very busy few weeks so far.

RAEWYN: Yes, well though it always generally is busy. I think people kind of, it … we generally get about 50 emails a day, usually. So yeah, it’s good. It’s good busy though. It’s good. Lots of inquiries.

JULIE: Absolutely, so we’ve got so much to talk about but I thought we’d start off with ADHD New Zealand as an organization, how did it all start?

RAEWYN: Right well it, ADHD, it started off as ADHD Association and it started in 1979 in someone’s garage basically. I think the person had no idea where to find ADHD and realized that there was no information about ADHD because of course this was before the land of computers, and Google, and such. So started just reaching out and she was inundated most mainly by parents with their children saying “Where do you even find help?” So, it started off as a, basically, a self-help group and then in 19 … 2018 it became officially ADHD New Zealand. I took over this role in October 2019 from Marceline who had been the coordinator for like 15 odd years. So, it’s been going a long time, a lot longer than a lot of people realize but we’ve just been chipping away in the background.

JULIE: That’s brilliant. And tell me about, just briefly, about the team. How many of you are in the organization?

RAEWYN: Right well I’m the only paid employee of ADHD New Zealand and I only officially work 25 hours a week, which is amusing. There’s Suzanne who’s the chairperson, and we’ve just recently taken on a new general manager operations Donna, so that’s really awesome. And we’re overseen by a board of about nine board members. And they meet once a month and sort of channel which direction we’re going. Whereas I take care of the inquiries, and the courses, and the computers, and just about everything else. But it’s a good group. It’s a passionate group.

JULIE: I bet, I bet it is. So as an organization you do offer so much. Your website alone is jam-packed full of information. You know, in brief there’s events, and you’ve got forums, and you’ve got online resources, and a whole bunch of things going on behind the scenes. So can we talk about the information so we can tell our listeners?

RAEWYN: Yeah, the information. The information is it’s one of those things that’s grown organically. It’s like, started off small, I’d imagine, it was before my time it was created. I think it was originally created by a grant from Fonterra many many decades ago and so if anybody sees anything that’s slightly dodgy, please email me. Because sometimes you kind of do a bit of a deep dive every now and then and think “Oh my goodness, what is that?” but yeah, we try to offer as much as we can. I think the … our most visited site on the website is the adult self-screening tool. And that’s visited you know, a good 20,000-30,000 times a month, it’s hits on it, which I think sort of says a lot in the fact that we’re getting more adults trying to find out about ADHD now. When I first started this job, gosh … five years ago, it was mainly parents looking for children. But now, since you know 2020 – 2021 when we all went into lockdown, it’s now the adults looking for answers, which is really interesting. And of course we have the healthcare directory when people are looking for psychologists, or psychiatrists, or pediatricians, that sort of thing. So, and yeah, and of course it’s lots of different things. There’s videos and there’s you know charts, and there’s random stories we may have found, or news clippings or yeah. It can get a bit mishy-mashy. 

 

JULIE: That’s brilliant. But it’s all there, isn’t it. [It’s all there.] And I know that behind the scenes other team members are really active in being the advocate for ADHD in New Zealand, huis [meetings/gatherings] with government and things like that, so there’s a lot of up-to-date information. Whether it be changes, or potential changes to Pharmac, you know, it’s all there. So it’s a really good source of what’s happening.

RAEWYN: Yes, and we’re always doing our annual surveys. At the moment we’ve got the Parents of Children annual survey underway so people can, you know, complete that. We also have the Adults with ADHD survey and that’s the sort of facts and figures that are great because we can go to the government and say “This is what the community wants.” Or if the media contact us, we can say “Well according to our research blah blah blah,” as opposed to … so much research is all American or it’s English and it doesn’t sort of have as much of a bearing on us. So this way we can kind of keep the finger on our pulse, sort of thing. Yes. Yeah and of course over the years because we’ve got all this stuff, media are now coming to us, or Pharmac will come to us and say … you know about the shortages of medication we’ve having at the moment, they give us the announcements and we spread it out to the community. So it’s quite nice. We’re no longer getting ignored. We’re actually, you know, people are contacting us now, which is kind of cool.

JULIE: Absolutely, no that’s fabulous. But not only the website, online, you have a host of other resources available and, you know, I’d like to talk about events, and your forum too on social media.

RAEWYN: Yes. Yes, Facebook groups. The Facebook groups have grown so much. When I started five years ago I think the, my predecessor says “Oh yes we’ve just started up these Facebook groups and I think they’re okay. So just pop-in every now and then,” which ‘popping-in’, I mean, I’m so grateful to our team of volunteer moderators who look after them because there’s over 10,000 members. We’ve got the Adults with ADHD – so 10,000 there. 10,000 and the Parents of Children with ADHD. And there’s also a smaller group of Partners of Adults with ADHD. So we’ve got three of them going and I think it’s great because it stops that isolation. I think when you have a child who’s diagnosed with us ADHD or yourself, it’s that kind of “Well, who else has this?” I remember when my son was diagnosed, gosh 15 odd years ago now, it’s isolating, and it’s nice to be a to reach out. And I think the Facebook groups do that because, you know, you can be anywhere in the country and you can go online. And the moderators try to keep it as safe and you know, it can be a bit tricky sometimes. I think people, you know you can’t read tone in messages, and so the moderators just kind of keep an eye on things, which is really awesome.

JULIE: Yes and I think when you’re beginning your ADHD journey, to feel that you’re not alone and to be with tribe, albeit not in person but to hear of other people going through similar challenges, or struggling in various ways, it’s really nice to know that you’re not alone with that regard. And so the forum I think can be quite cathartic and supportive. And even as a … just an observer you know, just … you don’t have to be 100% active all the time but just to pop in and check in.

RAEWYN: Yeah, it’s really good. There’s even information you don’t know to ask, that’s I think the other thing too. People might be chatting about, I don’t know, IEPs individual education plans, that they’re doing with their children at school. And of course, the school hasn’t mentioned it to you, you know. How would you know what an IEP was? So that sort of stuff too, it kind of spreads information and hopefully useful information.

JULIE: Yeah, absolutely. Yeah. Also too you run webinars quite regularly. Tell me about your webinar series.

RAEWYN: Right, gosh, yes. We’ve actually picked up the past in the webinars. We try to do at least one a month. We’ve got about three happening this month which is really cool. It all started with our very first which was Finding Karma in the Chaos, which was quite good. That was, I think middle of last year. But since then we’ve had amazing ones like the Role of Nutrition on Treating ADHD, Hormones and ADHD, a lovely one on with yourself with your book The Missing Piece, which was really awesome, the Autism/ADHD Overlap, Value of Coaching and Counselling, that sort of thing. We even had one last week Embracing the Chaos … we’re back to embracing the chaos [Oh, brilliant.] which was a nice to start to the ADHD awareness month because it was actually really positive one. It was like all the positive stuff about ADHD, which is nice because so often it’s all about, you know, how to fix yourself, where you don’t actually require fixing. [Correct, absolutely.] It’s not a disability. So it’s like, you know, you’re not broken. You don’t need fixing.  [That’s brilliant.] So there’s a lot of that these days.

JULIE: So, with the webinars, because I have attended directly or indirectly a webinar with you guys, it’s really nice because it’s a private group. And I think that’s wonderful so if there are any questions from the attendees they can do that knowing that it’s within, you know, the confines of that particular group, which is great. And also, now it is a paid attendee thing, could you explain how that works as financial member?

RAEWYN: Yeah, or a non-financial, because that can be a bit confusing too. It’s like “What does that mean?” A financial member is somebody who’s paid to be a member of ADHD New Zealand. We charge $39.95 for the year and that gives you discounted rates in the webinars. And we’re trying to like encourage businesses to give us discounts for our members, that’s kind of the main goal long term is what we’re hoping for. But, or it’s $59.95 for a non-financial member and that gives you a year’s membership for ADHD. So we kind of do that with those ones as well as our main course, which was actually was the only course for quite some time, was our online Everyday with ADHD parenting course. And we run that three times a term and that’s $74.95 for financial members, or $114.95 for non-financial members. And yeah so we tried to sort of do a little bit more and then they become a member for the year, and then they can get the reduced rate. But I think it’s nice, it’s part … then you’re part of the community. You get your e-newsletter, which is me kind of rambling on but also, you know, about what workshops are coming out, webinars, events, that sort of thing. We tried to, we haven’t actually had a physical conference since 2019. We used to always try to, so I’m hoping in the near future we may have another one. Hopefully next year because 2020 happened, and then 2021, and then everything kind of just went online basically. I think that’s … from that point on, but I like the in-person touch a bit more. But then in saying that, online means we can get everybody from the top of New Zealand right down to the bottom, so it’s not, you know, locked in just for a big centre like Auckland and Wellington. It’s paid off. Yeah.

JULIE: No that’s, absolutely that’s great. Oh, and also too, with the financial membership too, because ADHD New Zealand isn’t a government department. It’s not funded by anything. It’s really self-funded so if attendees can contribute by way of membership that goes towards the whole operation, and the whole thing ticking over. [The whole sha-bang.] And being available for everybody so yeah, I think it’s a small … a small price to help your community in which we’re all thriving and learning every day from.

RAEWYN: Also we have … I’m going to put a plug in for our Ask an ADHD Coach sessions too. [Yes.] We have our amazing three amazing coaches – Alex, Brett, and Tracey, who offer these every month. And Alex’s is aimed at Adults with ADHD, and Brett’s Parents of Teens with ADHD, and Tracey’s Children with ADHD. And it’s a great way to just kind of chat with ADHD coach and a small group of like-minded people and that’s just on the price of a donation. So, you could just do that for a dollar or whatever you would like to donate really. So it’s … and we’ll be doing those again next year, so they’re really cool.

JULIE: Is that in the same format as a webinar? So you register, you’re in a small group, and you get to ask lots of questions and maybe some, you know, to a real coach who …

RAEWYN: To a real coach, a real trained coach. And it’s really cool because usually it’s me. I go to all the webinars and all the ADHD coach sessions. It’s me and the other coach and maybe about four or five. Some I think the biggest group we’ve had was about 20 with Alex but generally it’s small and yeah, it’s quite cool, especially with the teen ones because I have teenage with ADHD suits so I get to sort of sit there going “Oh oh my goodness, yes I remember that.” And yeah, it’s kind of like a really in-person support group, [yes] with an actual trained coach, which is awesome. So yeah, look out for those. But yeah, offering a lot more than we used to regarding courses and stuff. I think that’s really cool because I get a lot of inquiries from people wondering how or where do they go for help, and I kind of direct them. I feel like a sign-post. We’re like we’re navigators. So we direct them here, direct them there, but it’s nice to be able to say “Well we’ve got a coach coming up, a course coming up,” like one we’ve got coming up week which is Anxiety and Teens with ADHD, which I thought was quite timely for exams. Or there’s an ADHD with Girls course coming up in November, so that sort of thing. You can tell where I am in my life with which courses are on. I’m thinking my daughter with the November one. I’m thinking “Oh she’s getting a bit anxious, I’ll put in a webinar about ADHD girls.”

JULIE: I’ve been asked quite often by grandparents of grandchildren with ADHD and they’ve kind of taken it upon themselves to seek more information to try and understand their grandchildren but also to support their own children, if that makes sense. So they feel that they’re the conduit between you know, they’re trying to make sense of it all. And so yes, I’ve been quite surprised how the older adults are really invested now whereas once upon a time it was a stereotypical young boy, and things have very much changed since the 80s. But yeah, they’re really invested and I think that’s really nice. So potentially that could be a good webinar too for older adults.

RAEWYN: Yeah actually, you’re quite right. I do get a lot of contact from grandparents raising grandchildren. I have huge huge admiration for grandparents who are raising their grandchildren. Oh my goodness, especially when there’s other things on top of just that as well. Not just ADHD, autism or whatever else. So yeah, absolutely. It’s not easy. 

JULIE: So what are the most common questions that come to you on a sort of a regular daily or a weekly basis?

RAEWYN: Mostly interestingly enough, when I first started it was parents saying “My child is having trouble at school. How do I get them assessed,” that sort of thing. But that is a very rare question these days. It’s mainly women, interestingly enough, asking how to get assessed or diagnosed. Or they ask advice about medication, that sort of thing. But we don’t have a particular stand on medication because we know it’s a hugely personal decision either way. But I can just sort of say “Well psychiatrists diagnose, you know, prescribe and blah blah blah,” so I can’t really offer that direction but sometimes it’s just for a chat too. Sort of like, you know, “This is getting really hard. What do I do?” So I usually really, I usually suggest coaches. I’m a huge advocate for coaches and talking. And because I think a lot of people kind of get sold on this whole, you know, the medications are a silver bullet, but yeah, I’m big on coaching. Yeah. Just cool. But it … and there’s also that stigma. It’s like “My child is, you know, having problems. Oh no, what will people think of me?” But I think it’s changing. I don’t think we … I’m hoping it’s changing because it’s that whole stigma of “Oooooo.” But it could be just the fact that …. community.

JULIE: Look I do, I do think it is changing. I mean my wish is that ADHD is normalized, you know, and it’s part of the chat and it’s not so much of a shock horror. In fact, I don’t believe it is. I think with, you know, everyone will know of someone who has been diagnosed recently. You know, whether it’s your neighbour, or a workmate, or your partner, or a family member. And so I think these discussions are happening more and more, which is brilliant. And the more that we can own it and try and push away so some of these misconceptions and myths, the better it is for everybody. It’s all about understanding the ADHD. I’m with you Raewyn with regards to when it comes to strategies. That’s another question I get asked all the time and I say “Look, I can tell you mine but they will make no sense to you. Because, you know, I’ve identified my trip hazards and I’ve done something about them or I’ve got tools and my toolbox to address them, but everybody is so different. And that’s why I think someone like a coach where one-on-one you can actually explain what your problem is. And it’s so different because ADHD isn’t this one-size-fits-all disorder, and you’re not going to have the same identical problem, and the same environment, to the same you know excessiveness you know? Yeah very much scale. So oh good on you. Well ADHD New Zealand I think is doing an amazing job and really, you know, spearheading ADHD for the country. And given the numbers, the increases in diagnoses, I take my hat off to you and I just think it’s such a wonderful, wonderful organization. And I think those that are on their own personal ADHD journey, really if they haven’t already found your website, but to really look to see how more involved they can be in the greater community through you guys.

RAEWYN: Thank you. I always feel a bit, I wouldn’t say I feel … yes, I do feel bad because a lot of people with the constant emails I get, sometimes some slip through. So if I do not get to you, please email me back because I will sometimes we lie awake night and go “Oh my goodness, I saw an email that I didn’t respond to. Oh my goodness. Oh my goodness,” but I try to do the best we can because a lot of people think we’re way bigger than we are. [Yes.] I know, phone calls from people go “Oh are you on the front counter or are you in the back office?” I’m like “No, it’s just me. [I am. I am.] You know, so we kind of do what we can on a huge shoe-string basically, and like you said we don’t get government funding. We are purely on donations, memberships, and grants. And so I also send out all the grant applications every year and keep everything crossed and hope that some of the grant money will come through. And yeah, we keep going, keep going.

JULIE: Yeah, oh that’s brilliant. That is brilliant. Well, in the copy for this podcast I’ll be putting all the links so listeners can go and read that, and find forums on Facebook, as well as the website for all your mighty information.

RAEWYN: Thank you for your support too, Julie. I mean you know, but we do appreciate you spreading the good work on ADHD.

JULIE: Oh no, absolutely. No, I’ll be spreading the word for a long time, absolutely. Look, I will say thank you very much Raewyn for your time. As I said, I know it’s a really busy month and as the national coordinator you know what’s going on and thank you so much for sharing more insight into the organization.

RAEWYN: Thank you, I really appreciate it. I don’t usually get out to talk to people like this, that’s really nice. You usually hear from Darrin so I appreciate it, thank you.

JULIE: You’re welcome.

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