Transcript
Dylan Alter (00:20):
Hello. My name is Dylan Alter. I am an ADHD coach at neuroqueer.org and also at my private coaching business, alternativeadhd.com. I am non-binary, neurodivergent, I have Jewish and Choctaw background, and I was only diagnosed in my mid-30s. And building community around neurodivergent queer space is the best thing that’s ever happened to me. The research says that we do this better in community. For many of us for the first time we can be in a room where we’re not the weird one, where we’re not too much, where we’re not distracted more than other people. There’s magic that happens in that space. There’s a lot of relief, there’s a lot of grief, there’s a lot of joy.
Lindsay Guentzel (01:09):
Welcome back to Refocused. I’m your host, Lindsay Guentzel, and throughout the month of June, this podcast will be uplifting and amplifying some of the incredible voices we’ve met over the last year both through podcast episodes and over on our Instagram page @RefocusedPod. Our commitment to creating an inclusive community isn’t isolated to just pride month. It is something we take into account every time we start to research a topic and book a guest. And now more than ever, it feels so important to make that commitment known. Neuroqueer is a relatively new term. And as you might have guessed, it refers to a person who is both neurodivergent and queer. Like Refocused Together 2022 guest, Dylan Alter. And as you’ll hear from my chat with Dylan, these two identities, they aren’t separate.
(02:03):
There’s a very strong connection between the two experiences. ADHD was not on Dylan Alter’s radar. They had been dealing with depression for about a decade. In treatment and therapy for it, working the programs and support systems and even taking medication. It helped a bit, but life was constantly in triage from one emergency to the next. Once they were correctly diagnosed, Dylan found a therapist who specialized in ADHD and started a Facebook group for friends and friends of friends with ADHD. This community kept growing and eventually turned into neuroqueer.org. A community for adults who are LGBTQ+ and neuro diverse. From educational webinars and coworking time to dance parties to get the dishes done, Dylan and the team at neuroqueer.org have found that the process of being diagnosed with ADHD parallels the queer experience in that for a long time, people needed to be something they weren’t in a world that wasn’t made for them. Now there’s a place where people can be authentically themselves, get the support and resources they need, and experience a feeling of home that many have never felt before.
(03:30):
Building this space is what gets Dylan up in the morning every single day, and it has firmly grounded them in kindness, compassion, and facilitating understanding so an entire community can grow stronger as individuals and together. My conversation with Dylan is one of the 31 stories we shared last October for our first Refocused, Together. Our commitment to changing the narrative around neurodiversity for ADHD awareness month. October, and all of the work leading up to it and frankly, most of November were a complete blur of interviews and editing and full-blown overstimulation from having headphones on for the majority of my waking moments. So having this opportunity to take a second and revisit my time with Dylan was such a gift, and I’m so excited for you all to meet them today. Or for some of you a reintroduction to their incredibly inspiring story.
(04:43):
Thank you so much for joining me on Refocused, Together and being a part of this very special ADHD awareness month project, 31 stories in 31 days. And I am so excited to hear a little bit more about yours.
Dylan Alter (04:58):
Oh, gosh. Thank you. Thank you. I’m so honored to be included in this, and I just really want to applaud this project that you’re doing. I think it’s so important to get those stories from all the areas of the ADHD community. We haven’t always had that, and we’ve had this revolution of ADHD awareness with the pandemic, but so many of us are still very isolated in that experience unless we’re on Instagram or TikTok. And I think sharing those stories of what it’s like does so much to normalize what we experience personally in our own minds and those emotional rollercoasters. So I just want to say thank you for doing this project.
Lindsay Guentzel (05:36):
Oh, thank you. I’m sure you can relate to the fact that when the idea popped into my head, it was just like, yes, this is it. 31 stories in 31 days. It’s a little crazy. It’s very ADHD. But the whole point of it is to raise awareness. And what we know now is how different ADHD is for every single person. And I think this is a great way to, like you said, connect people who are missing that connection to somebody who lives life like them.
Dylan Alter (06:10):
Absolutely. Absolutely. And yes, 31 interviews in 31 days is absolutely one of those ADHD, sure, I’ll move the mountain. And if you find that you need cheerleading, let me know.
Lindsay Guentzel (06:25):
Pom poms. I love it. Thank you. Why don’t we get started talking about your own diagnosis and when you were diagnosed and what that looked like for you and what initially sparked that conversation.
Dylan Alter (06:39):
Sure. Yeah. For me, like so many folks who were diagnosed later in life, it’s an unbelievable hurdle to get diagnosed with ADHD. It requires a lot of privilege. I think that there’s a deep irony at how much executive function it takes to be able to access a diagnosis.
Lindsay Guentzel (06:58):
Right.
Dylan Alter (06:59):
I went in initially, ADHD was not on my radar. I had no idea that that was a thing that was a factor for me. I went in because of depression. I’d dealt with depression for about a decade, been in treatment for depression, been in therapy, really, really working programs and support systems, and was even on depression medication. It helped a bit, but not enough. It didn’t help enough. My life was still just chaos. I felt like I was constantly in triage from one emergency to the next. And meanwhile, the day-today was just a dumpster fire. I was an attorney and I was great in court, and I was great in negotiations, but in the day-to-day management of a business, I was miserable and failed just perpetually at those just little things that seemed like they should be easy. And I was the friend that people would call in an emergency because I would be there reliably in an emergency and could absolutely handle it.
(08:03):
But then my inability to consistently keep up with my friends undermined and degraded those relationships and made people feel like I didn’t care. And I’d tried everything I could think of to make changes in my life and nothing worked. And so I was really in a dark place of just frustration and depression and just not knowing what to do. And went in for evaluations and this incredibly bright clinician started asking me about my driving history. Which in my teens and 20s, I had a lot of accidents. None in a long time, knock on wood. And she asked me what my bedroom and office looked like, and I said, “Piles, but I know where everything is in the piles.” And she said the most amazing words of, “Has anybody ever suggested ADHD might be a factor?” And it was like a bucket of water being thrown on me.
(08:59):
No. No. Nobody had ever suggested those things. I was excellent in school. And often we assume that ADHD is correlated with intelligence. There’s absolutely no causal relationship whatsoever. And so that was new information and a brand new perspective. I passed the evaluations for ADHD with flying colors and turned out I am indeed on team squirrel. Then I also had to get through the hurdles of dealing with getting medications and dealing with providers who were not fantastic. There are a lot of hurdles, and I had a lot of privilege as a white passing and masculine and attorney raised by doctors to be able to advocate for myself. But it’s horrific out there trying to manage those things. When I tried medication, it was a whole new world. You have that moment of, oh my God, is this what it’s like for other people?
Lindsay Guentzel (09:59):
So much of what you’ve said is very similar to the realizations that I had about the medicine and realizing I had been living almost 35 years with this brain fog. I kind of describe it as it felt like I had been living with a dryer sheet shoved up in my forehead, and then all of a sudden I took medication. I started the medication on day one, and it was like somebody just ripped it out. And you don’t know what you don’t know and I applaud you for acknowledging and realizing the privilege that comes with the fact that you were able to be diagnosed and that you had lived a life knowing how to advocate for yourself. It is frustrating. You go back to everyone’s diagnosis story and they’re so different. But how wonderful for you to be in that situation where you had a clinician who asked the right questions and who didn’t just dismiss you and send you on your way with a prescription for depression medication. They took the time to understand the complexities of ADHD
Dylan Alter (11:07):
Absolutely. And I do want to note here for listeners that even with all of my privilege, I still brought a friend into that evaluation with me to help me advocate. I think it’s very common to think you have to do this on your own, and that can be really intimidating and really scary. You don’t. You can bring a friend, you can bring a family member to help you advocate for yourself to not get dismissed. And yeah, that dryer sheet that you’re talking about, absolutely. Just cotton stuffed in. And then the analogy that kept coming up for me when I was explaining it to my therapist later was it felt like I’d been herding cats all my life, just trying to get them in order, at least know where they are, keep them out of trees and fires and all that stuff. And when I took the medication, they formed this delightful little queue and took a number.
Lindsay Guentzel (11:59):
That is a great image.
Dylan Alter (12:01):
I’m a big fan of ADHDers metaphors. We just love the creative embellishments.
Lindsay Guentzel (12:08):
So before we go any further into your ADHD story, let’s talk about what you’re doing now because I know your diagnosis has played a role in the life you’re living right now and the person you are and the work you’re doing.
Dylan Alter (12:24):
Thank you. Yes. My diagnosis is one of the best things that ever happened for me. It just completely changed my life. For those who aren’t put off by the hokey life wheels, if I were to do a life wheel, which I often invite my clients to do, every metric is significantly better than it was prior to my diagnosis. So once I got diagnosed and got on medication, I was lucky enough to find a therapist who specialized in ADHD, and I also started a Facebook group for friends and friends of friends with ADHD because we have this strange tendency to just gravitate towards each other. If you have ADHD it’s very likely other people around you have ADHD whether they know it or not. And so in that group, more and more of my friends realized that they also had ADHD.
(13:16):
One of them decided to become an ADHD coach and go to the ADDCA school for ADHD coaches. I was so inspired that I followed suit and we started building community for queer folk with ADHD. And that was an organization called Queer ADHD. It unfortunately is no longer around. However, we needed to carry that space forward. That opportunity for community and connection and support and coaching. And so we’ve launched neuroqueer.org, which is now inclusive of ADHD and autism. That’s for adults who are LGBTQ+ and neuro diverse. And it’s absolutely incredible. We offer coaching, we do to-do lists on Mondays, we have Wednesday check-ins, we have coworking, we have STEM parties, we have educational webinars on different aspects of ADHD and autism, we have dance parties to get your dishes done. And in addition to the opportunity to get education about our neurodiversity, we’ve found that there’s this process of being diagnosed where you have to integrate this part of your identity. And it parallels the queer experience very similarly where for all this time we tried to be something that we weren’t and we thought that that was the better way.
(14:47):
And at a point you have to stop and go, okay, the world is like this. It’s not made for me. I have to choose me and I have to make a place in this world where I can be myself that supports who I am. And of course, with ADHD, one of the most effective supports is positive niche creation. Most ADHD support does this individually through one-on-one coaching or through therapy. But every other mental health challenge, the research says that we do this better in community. And so neuroqueer.org is a place where for many of us, for the first time, we can be in a room where we’re not the weird one. Where we’re not too much. Where we’re not distracted more than other people.
(15:31):
There’s magic that happens in that space. There’s a lot of relief, there’s a lot of grief, there’s a lot of joy. The brainstorming and laughter and jokes are just world-class. And we’ve got people from all over the world there. It’s amazing. And so in that space, being able to create that community for the first time that I’ve been able to find anywhere, we’re finding out what it looks like to create space that is neurodivergent first. That isn’t based on people pleasing or learning how to act like a neurotypical, but how do we function naturally? And then what does that mean for how we can create our environment to support us?
Lindsay Guentzel (16:16):
I am very intrigued about the dance party to get your dishes done. I might have to just start a solo club where I do that in my own kitchen. That’s at the top of the list for conflicts in our household about the dishes. I’m in a long-term relationship with someone who is very good at starting at A and going all the way to Z and then never getting frustrated. And so I will say, I hear dance party, I hear dishes. I haven’t experienced that they go together, but I’m very excited to try it out and I very much appreciated how honest you were about the comparisons in the parallels between ADHD and being a queer person. And as a straight white woman and all of the privilege that comes with that, that’s just something that I haven’t experienced. And so I’m curious if you could dive in a little bit about that balance for you and maybe some of the frustrations that come along with having to be defined by a label that society has put on you.
Dylan Alter (17:15):
Sure. Sure. I also want to, if it’s all right with you, push back a little bit possibly on the idea that that experience is entirely foreign to you if it is. Right now in ADHD discourse there’s so much advocacy for women in ADHD because that’s been a really neglected group for so long. The focus was just on white western cisgender boy children.
Lindsay Guentzel (17:45):
Right. Yes.
Dylan Alter (17:47):
One of the things that ADDCA pointed out was that one of the most common character strengths for ADHDers is kindness and compassion. And so any time that there’s this feeling of we don’t want to step on toes, we don’t want to take somebody else’s experience, but we want to relate. And in neurotypical culture, there’s this idea that to relate is to take something away from someone. To take the attention away from them. And I’ve found that it’s the reverse in ADHD culture. And the more that we can relate, the more that we can humanize and understand one another, the stronger we are as individuals and as a community. For example, one of the reasons why we didn’t know that adult ADHD was a thing was because boy children with ADHD would grow up and they’d get girlfriends and wives and secretaries who handled all of their executive function. And so the ADHD disappeared, but then they hadn’t done any of the self-work, so they were still emotionally volatile and they didn’t know who they were and they’d have these midlife crises.
Lindsay Guentzel (18:53):
I’ve never heard that explained in such a way that makes complete and total sense to me. Yes. You say that and you’re like, yes. Why haven’t we realized that?
Dylan Alter (19:03):
Right. Once you see it, you can’t not see it.
Lindsay Guentzel (19:06):
My brain right now is just digesting that. I just needed a moment there because the picture you painted is one I think so many of us can relate to, especially if we know someone. My father being one of those people.
Dylan Alter (19:22):
One of my philosophies around neurodivergent and ADHD support is not just to teach and create cultural accommodations. I heard somebody describe ADHD symptomology as all of the effects of ADHD that are annoying to neurotypicals. And that’s pretty much what we have on paper in the DSM-5. And there’s so many other factors to ADHD that Russell Barkley is teaching us about. And so trying to figure out not just how do we people please and do this drag performance of neurotypicality that leaves us feeling like we’re abandoning ourselves, but figuring out, okay, let’s find out the folks that we haven’t listened to. Black experiences of ADHD. Indigenous experiences of ADHD. Queer experiences of a ADHD. And we’re finding just incredible aspects of this experience of brain chemistry, of our nervous systems that nobody else seems to be looking at yet.
Lindsay Guentzel (20:32):
You mentioned your ADHD diagnosis is the best thing that’s ever happened to you. It is so clear that what you’re doing is what you were meant to do. The energy you’re putting out in this space is lovely. I don’t know if that’s a very Midwestern way to describe it, but it feels good like a hug. It’s very, very nice.
Dylan Alter (20:56):
I appreciate that. I appreciate that. And I feel like nobody does wholesome appreciation as well as the Midwesterners.
Lindsay Guentzel (21:02):
Oh, yes. We do wholesome very, very well. Passive-aggressive, but we do love our wholesomeness. I want to talk about your own experience with ADHD. And obviously hindsight is so important in all of our own journeys, and we can look back and we can see moments that just stand out. And so for you, what has always been the biggest hurdle with your own ADHD and how it shows up in your life?
Dylan Alter (21:29):
That’s a great question. The obvious answer would be to say becoming an attorney. I was completely undiagnosed going through law school and the California bar exam. There was the irony that all the neurotypical kids were taking Adderall off label, and I wasn’t. When I got diagnosed, there was some resentment there, I won’t lie. But honestly, rather than ADHD being a hurdle for the California bar exam, I thank my hyper focus to getting me through it. My computer crashed in the first 15 minutes of three days of testing and I had to hand write it never having practiced that. I would bet money that if I’d hadn’t hyper focused I would never gotten through it. But to give the deeper, more honest, slightly more vulnerable answer, the biggest hurdle for me has been honestly dealing with the grief and the self-acceptance. And there’s the grief of what would it have been like or those sort of things. But the most meaningful thing that has improved my life has been forgiving myself for how I treated myself before I knew that I had ADHD.
(22:41):
All of that negative self-talk, all of that, why can’t you just do this? Or you should work harder. Or putting myself down or emotionally whipping myself with a stick to try to get myself to do things. I was frustrated and I was trying everything and it just didn’t compute. And I thought everybody had to work that hard. Because like you said at the beginning of the interview, you don’t know what you don’t know, which is, again, one of the great things about creating these community spaces where you can talk to other ADHDers and be like, oh, that’s not just in my head. That’s a thing.
Lindsay Guentzel (23:16):
Just the second you said, the grief and the self-acceptance, that is something I am struggling with so hard and I like to put on a brave face and pretend that I’m moving forward. And I am but it’s still like the big old bag I’m dragging around. It’s getting lighter. It’s getting easier to carry. But I’m wondering how you’ve worked on that. Because I think it’s so easy to be like, yeah, I am accepting who I am and moving forward with that knowledge and giving myself grace and forgiving myself for how I treated myself. But that’s heavy. And the fact that you’re there is … It’s amazing.
Dylan Alter (23:59):
I think being queer and non-binary gives me a bit of an advantage in that. I’ve grappled with senses of selves that were not authentic to who I was, but were basically a trauma response. Russell Barkley notes that one of the most common factors for children being diagnosed is peer rejection. By the age of 12, we hear 20,000 more negative messages about our behavior from adults. And so it makes all the sense in the world why we have rejection sensitive dysphoria. Across the board we all will ignore our own deadlines, ignore our own boundaries, ignore our own alarms. But if a friend is coming over, we’ll clean the whole house. And that spoke to me of a fracture in the bedrock of our trust with ourselves. We’ll hit snooze because we don’t believe that alarm really means something. Because there’s been this disconnect between who we are and who we think we should be.
(24:56):
And that is very much a trans experience, but that’s also I think a cisgender experience that gets overlooked. Cisgender people also experience gender role stress. Every man who thinks he’s not man enough. Every woman who thinks she’s not worthy. Men who feel like they have to go to the gym all the time or have to have genitalia of a certain size, and women who are worried about body hair of this. It’s a gender role stress. It’s expecting ourselves to be somebody that we’re not because who we actually are doesn’t feel good enough. And there’s this magical thing that happens when we stop expecting ourselves to be something and instead ask ourselves for what we need.
(25:39):
So instead of telling myself, Dylan, you have to get up at this time, you have to do this thing, you have to do these assignments and these projects, I started building relationship with myself the way I would with somebody else. Because with ADHD, we’re very good at that. We’re very good at offering compassion. We don’t tend to tell people what to do because we know how much that hurts. If you tell an ADHDer you should do something, even if we wanted to do that thing, it’s now dead to us and we’re walking the other direction. But if I asked myself, “Hey Dylan, would you please wake up at this time? It’s really important to me. Here’s what it would do for me.”, my resistance melts. I’m like, “Yes. I’ll hop through that hoop. No problem. Would love to.” And that can create such a stronger foundation that then can be used to customize all of those tips and tricks and strategies and skills for a ADHD so they actually fit who I am so they’re not an additional burden I have to carry.
Lindsay Guentzel (26:39):
I love the idea of treating yourself the way you would treat other people because it’s spot on. The lengths I will go to make someone else happy versus what I’ll do for myself. So I’m wondering when you’re having those conversations with yourself, where you’re asking something of yourself in a way that, like you said, you set your alarm and you get up at this time, this is what it will do for me. This is how it will make me feel. Are you doing that at a specific time during the day? Do you make a list? Is it just having that moment of clarity and alone time and mindfulness? Because I think of how my brain works and I might have that conversation and then three hours later it’s gone.
Dylan Alter (27:25):
Absolutely. Absolutely. And there is an aspect of ADHD that feels a little bit like some sort of time travel detective story of what happened yesterday? What did I agree I would do? Carving out moments for mindfulness, having presence of mind for routines, that’s a whole thing. And I caution against giving rote instructions for these things because it’s so easy for us to people please. To play act. And then the system breaks down and we blame ourselves rather than the system. So what’s worked for me is to pay attention to what I do. Notice the times when I’m sitting down and I’m numbing myself out from other stimulus with something mindless. And instead, choosing to have a moment to collect my thoughts, collect my sense of purpose. And I’m doing it not because I have to, but I’m doing it because it’s going to make the rest of things go easier.
(28:36):
So instead of this thing that I’m trying to remember to do, trying to force myself to do in that responsibility obligation thing, I’ll write things down because then it means I don’t have to carry it in my head and I get all that extra mental space. My method of ADHD coaching and self-work absolutely is more of finding out how to get out of the way in the right direction. To make things easier, to make it authentic to how I function so that I don’t have to remember a system that’s going to break. I want less to hold.
Lindsay Guentzel (29:14):
I love that. And so much of what you’re saying, it’s like looking back and seeing the different variables that are at play when you feel your best and when you’re getting out of your own way. You know that idea of, I know if I go to the gym, I’m going to feel great because I’m around people I enjoy and that’s a part of the variable system. I’m doing a workout I enjoy. Again, another thing that you pay attention to. And so writing those things down and paying attention to where you are and what’s around you and who’s around you, it makes total sense. But I think that it’s so easy for us to just expect that where we are in life is supposed to work. I say where we are, meaning the time, the place, the energy, the people, the environment. All of those things play such a role in how we function.
Dylan Alter (30:08):
Absolutely. I find that a lot of us will be deferent to our environment. We’ll assume that the environment is static, we don’t get to change it, and we have to do infinite permutations and manipulations internally without any help, even to the point where many of my clients don’t feel like they have enough power to block off time in a calendar, because what if I’m wrong? And getting to that point where we are actually in control of our systems rather than them being in control of us can make a lot of difference. And it requires trying and failing and taking that as just new information. But you’re exactly right. Pom poms. Going to the gym. If that’s energizing, if that helps you focus, other people being around, then that’s a positive environment for you. And so what would it be like if all the areas of your life … Maybe they didn’t all look like a gym, but felt as supportive as that. Felt as comfortable. Weren’t as irritating as other things.
Lindsay Guentzel (31:14):
I like that you’re touching a bit on the systems that have been put in place. Because I think sometimes we just assumed that the way things are done is the way they have to be done. I talk a lot about this with meal planning and meal prepping because disordered eating was something that once I was diagnosed with ADHD, it all came full circle and I realized that I didn’t have to live that way. That was something my brain was making up and it was putting on me. I tell people, I’m like, “You know that what people eat for breakfast was decided by somebody. You can eat whatever you want for breakfast. Does it make you feel good? Do you enjoy eating it? Does it give you fuel? Great. Is it pasta? Who cares?” It’s this idea of the people who set the rules, most of them aren’t around any longer. Those rules were set a really, really long time ago. So I love this idea of looking at making them up. Make up what works for you. Because wouldn’t you rather thrive in that environment and then be considered quirky or strange? I know a lot of us fear that because we’ve spent our lives trying to get away from that, but now we have the power to just kick it to the curb.
Dylan Alter (32:35):
Absolutely. And ADHDers are famous for our innovation. Our experimentation, our creativity. We’re not always wrong. Building on what you said about these things that we think are real, but really are just the way we’ve done things. Linear time. So many of us struggle with time awareness. That’s definitely one of my biggest challenges. And linear time is a cultural construct. From my indigenous Choctaw background I will tell you, tribal time, at least in Choctaw, is very different. South American cultures that I’ve visited and been in time is very different. Einstein had ADHD. I can’t think of anybody else who would look at linear time and go, I don’t know, and then come up-
Lindsay Guentzel (33:21):
Totally. So I want to know, when you look at yourself and you look at how ADHD is playing a role in your life right now, how are you thriving? What’s bringing you energy right now?
Dylan Alter (33:39):
I have so much appreciation and I’m so proud of and fairly shocked by how much I’ve been able to improve my life by learning about my ADHD, by becoming trained as a coach, by having a therapist who specializes in ADHD. That is one thing. But what gets me up in the morning every day, what gets me engaged, what I’m so passionate about is building this neuro queer community. This incredible thing happens when people show up where they’ve never felt that relaxation before. It’s incredible and I can’t wait to see all the things that we come up with in that space. And so many people just don’t have access to being around other people like them. And if you think about that, that’s just mind-blowing. It’s assumed that we all have that. And so many of us are isolated, and that’s just terrible for mental health.
(34:40):
But the energy there and the love and the care and compassion and camaraderie that’s built there amongst folks who have been isolated … Almost all of us have social anxiety or depression. And if you ask us if we wanted to hang out with a bunch of strangers, we would ignore that text message or that phone call. But once we’re there, you can’t pull us away from it. There’s this feeling of belonging, this feeling of home that we’ve never gotten before. And I can’t not fight for that. I’d like to take credit for the idea of building that community space, but it’s not my idea. I learned that idea and how to build community from my queer elders and from my Choctaw elders and from other BIPOC community. The value of creating community when the rest of the world doesn’t support us.
Lindsay Guentzel (35:32):
It’s so interesting how we use the internet to build these communities. There’s a lot of horrible things that are created and supported because of the internet. And at the same time, there’s so much good that comes from them because you are able to find the people that you can connect with, that you can relate to. And we wouldn’t have been able to do that if we were all isolated into our own little bubbles. Especially when you are someone who doesn’t look or sound or think or feel like the majority of people around you.
Dylan Alter (36:01):
Absolutely. I think the pandemic, ironically, was an incredible gift for ADHD community and neurodivergent community. We were all at home. We had fewer distractions. We realized it wasn’t just that we had too much on our plate, it actually was us. And we got on the internet and we started building community there in a way that hadn’t really ever been done outside of ADDA or CHADD. And for the first time, we’re connecting with people on TikTok all over the world. Which we still know so little about how ADHD is different across cultures or where it’s come up in mythology and things like that, which I find fascinating. I do have the dream of one day … I have a piece of property in Sonoma County that was our family’s farm that burned down two years ago in the wildfire, which was terrible.
(36:56):
But I will say for a family of neurodivergence, a forest fire was a hell of a way to do spring-cleaning. I definitely get nostalgic about some things, but I think the object impermanence has helped me let that go. But I do dream of someday making a retreat or a summer camp for ADHD adults. There are lots of summer camps for kids, but having a place where say we have a shed full of all the camping equipment everybody forgot to take with them last time, and all sorts of hobbies and skill shares and things, and a big board for what amazing idea did you have today. And a place where we can be in nature and just have that village experience.
Lindsay Guentzel (37:40):
I love that. And someday I hope to attend. I think one thing, if we can go back to the grief, I think of all the things I wish I would have done had I known what was holding me back, which was this monster in my life that was controlling so many things invisibly. It’s like the puppet master. The Phantom of the Opera. You don’t know what’s there, but something’s there and it’s not great. And so I love this idea of a camp where we can all go back and do the things that we wanted to do or that maybe we now know that we wanted to do. And that time we had no idea that was something even within our range.
Dylan Alter (38:22):
Absolutely. Absolutely. And that ability for us to be curious and to engage with new things. There’s indication that that may be a neurological benefit to ADHD. We have this developmental delay of 30% as we get to our 30s, but that creates this increased neotency. It’s a word I read, but don’t say often. Of increased neuroplasticity. And of course now we know that neuroplasticity extends throughout the lifespan. But I think ADHDers are always looking for new ways to do things. Maybe because we’ve been frustrated by things again and again. But that novelty, that creativity, that fascination is something that can be distracting, but it can also be such a gift. Because for folks that don’t have that, the idea of redesigning your entire life the way that you approach life, redesigning your identity and building it piece by piece in an authentic way, I don’t think a lot of people would sign up for that.
Lindsay Guentzel (39:28):
I think you’re spot on with that. Yeah. I’ve struggled with thinking of all the things I could have done and am working on acknowledging that I can still do those things. I still am at a place in life where everything I’ve wanted to do is still completely and totally within my reach. In fact, it’s probably closer because of what I know now. So it’s moving forward with my ADHD is like, I’m just going to do all of those things and going to do them in a way that actually is going to work for me. It’s accepting that.
Dylan Alter (40:01):
That’s so exciting.
Lindsay Guentzel (40:03):
It is exciting. And it feels like a gift. It does. Because I know that with more people being diagnosed later in life, not everyone is in that position.
Dylan Alter (40:13):
Right. Absolutely. But it’s something that we can fight for each other to have. When I think about the hurdles for my diagnosis, and I think of all the folks who don’t have my privilege in getting it, it makes me so angry. When I think about ADHD communities still being so white and so cisgender, and how many people are left out of that. Not just left out of that, but it’s not safe for them to be there. I get such a passion to create space that can at least be an invitation to start those relationships. I want everybody to get to have that gift. Getting to prioritize play. Getting to prioritize being interested in things. Getting to ask ourselves to do things. I know this is your your interview, but I’m very curious, what are you going to do?
Lindsay Guentzel (41:03):
Oh goodness. What list are we talking about? There’s so many things that I’ve wanted to do. Even just having these conversations is something I have struggled with getting out of my own way. I don’t know if it’s an ADHD thing. I’m sure there’s a part of it. I’m sure it’s part of being a woman and growing up with a lot of self-esteem issues. They all probably go back to that monster. But I’ve never really felt like I was worthy or good enough. And so to start doing things and putting things out there without the fear of that one person who’s yelling the loudest in the back of the room that I’m not supposed to be there. I think we focus so much on that one loud voice in the back and to start accepting that we can do things that we enjoy without fear of someone not liking it. Isn’t that so interesting when you’re like, you can do things and not worry about whether someone likes it or not. Who knew?
Dylan Alter (42:05):
Right. Right. Absolutely. Absolutely. Do you also find that one loud voice in the back is so much louder than all the teeny tiny little mouse voices that are like, “Hey, we did this thing this one time and it worked out. It was great.”?
Lindsay Guentzel (42:21):
Absolutely. It’s the one you focus on. It’s the one that sits there. It’s the one you go back to. I can pull up so many moments of shame and embarrassment. Oh, gosh. Complete self annihilation from first grade. And to know that there are people who walk around life that aren’t dissecting trauma from first grade every single day of their life. You can’t be mad. You’re just like, gosh, that is good for you. Heck yes.
Dylan Alter (42:52):
Yeah. I think for me it’s just like a that must be nice. I try to even comprehend.
Lindsay Guentzel (42:59):
I was having that conversation once with a friend. We were talking about neurotypical people. We were actually talking about our significant others and how we were explaining to them once what anxiety felt like and they had no idea what we were talking about. And what an amazing gift to not know what that feels like. To not be able to identify that pit in your stomach that we all can start feeling and we start growing and you’re like, all I can do is say, “Good for you. That is amazing.” You can’t even be mad. You’re like, I’m not envious. I’m just really happy for you.
Dylan Alter (43:34):
Yeah. Yeah. I wonder if that response, that graceful caring, boundaried response that you have to those folks, I wonder if that could also work on that voice in your head that’s shaming of, I hear that you wish that went differently. I’m glad that you’re advocating for something different.
Lindsay Guentzel (43:54):
Working on it. I’m in therapy with someone who specializes in ADHD and I think it’s so important that we all find what works for us. And sometimes I think people think of therapy as this very stuffy, very Frasier Crane sitting on a couch, lots of dark wood and books. Therapy can be whatever you want it to be. That’s the thing I would want people to know. You set the standard of what your sessions are going to be.
Dylan Alter (44:25):
Absolutely. And I’m so glad you brought that up because I was in therapy before I was diagnosed with ADHD and a therapist who would just sit back and let me talk. And of course, because ADHD, I can talk a blue streak forever. I just felt like I was on display or like a zoo animal. They wouldn’t relate. And then when I got an ADHD specialist therapist, she’s engaged, she’s challenging me with questions. She’s relating with boundaries to some degree. So I know that she really understands what I mean. And it’s night and day. I’ve made so much more progress in my couple years with her than I made in a decade with other therapists. So I think finding a therapist that actually works for you that you’re not people pleasing to or just going along with, like you said earlier, because that’s the way it’s done, can just make a world of difference.
Lindsay Guentzel (45:17):
One thing in the time speaking with you that I just find so powerful is how confident you are in yourself. And I’m wondering if you’ve ever thought or tried to pinpoint where that confidence came from. That confidence to be your authentic self.
Dylan Alter (45:36):
Well, I would like to take a lot of credit for it. I have to admit that I am only an extrovert on TV. I am an introvert at home by myself. But even before I became the current manifestation of myself, before I came out as queer, before I explored and embraced my non-binary identity and ADHD, I never really fit in. And I think that that’s something a lot of ADHDers experience, but also something that a lot of folks from oppressed identities experience. And when you’re queer, often unlike oppressed racial identities, you’re sometimes born into a family that doesn’t share the same trait. And I was always a tomboy. I couldn’t have been a femi cis woman no matter how much anybody paid me and there are some very awkward photos to prove this. And so I just didn’t really have another choice but to be me. I would try to be other things, and it just didn’t work at all.
(46:34):
It didn’t even get off the ground. And I think that there was something in there about trying to be something that I’m not that would hit that rejection sensitive dysphoria and just make me feel even more misunderstood. So even if I didn’t know fully who I was, doing the best I could and just accepting that I was going to be a bit discordant was just something that I couldn’t really escape as a kid and growing up and really had to settle with. And I do think that that built a lot of resilience and a lot of self-confidence because this is just what it is. But as I’ve grown into myself, as I’ve become more of myself, I can now be grateful for those aspects. Grateful that I have less to put down. Less backtracking to do. It’s so much more relaxing just being yourself and trying to be yourself and however many other identities you’re putting on to please other people, and you can find places where that is accepted and not just tolerated or dealt with or managed, but fully celebrated and embraced as corny and cheesy as it sounds. Just tying that back to ADHD, we do so much. We try so hard all of the time.
Lindsay Guentzel (47:48):
It’s a lot.
Dylan Alter (47:49):
It’s so much. It’s just efficient. Self-confidence at a certain point is just efficient.
Lindsay Guentzel (47:56):
That is such an interesting way to look at it. I’ve never heard it described that way, but you’re right. It’s the easiest way to go about it.
Dylan Alter (48:05):
Right. All that self-doubt. It’s heavy. It takes a lot of time. Just put it down. Just walk away from it like a phone that’s ringing. You don’t want to pick it up.
Lindsay Guentzel (48:12):
You’ve touched on so many amazing things, and I want to end by asking you if you were to send out into the universe one message about what people should understand about ADHD, what is that little nugget that will help them understand it better?
Dylan Alter (48:29):
In a ADHD discourse, there is so much time and energy put onto pinning down exactly what ADHD is, what executive functions are. There’s over 30 different models for executive functions. Russell Barkley did a really great lecture going through all these different models and why they’re ridiculous and where to start on that. And there’s all these things about, is it trauma? Is it genetic? We know that it’s genetic and that trauma also plays a part. But there’s still so many people in our ADHD community that we haven’t gotten to ask what their experience of ADHD is like. And it doesn’t really work to tell people, go out and be inclusive because we don’t know how yet. It takes relationship building. And so I want to invite folks to share in two of I think the greatest gifts of ADHD. Things that give us so much compassion. And that is play and curiosity. Before trying to define it, before trying to take up a new planner or a new calendar or get the dishes done all the time, if you’re a neurotypical person trying to understand somebody in your life who you care about and love, who has ADHD, take a step back from the stress, from the pathology of it and start with play and curiosity.
(49:57):
You’ll build trust. You’ll build relationship. You’ll have a better time. You’ll think of questions and perspectives that you never would’ve considered from this narrow perspective of like, okay, let’s go through the checklist. And neuropsychological tests for ADHD, even Barkley says they’re not worth much because they don’t factor in situational variability. We have to see how we respond in context. In relationship. And that can’t be on a worksheet. So I want to invite folks to play and be curious with each other and figure out what it’s like. I’m waiting for somebody to come up with a podcast that’s an ADHDer, somebody who’s autistic and a neurotypical, and the name of the podcast is, Wait, You Do What?
Lindsay Guentzel (50:41):
And it’s what? Three hours long and it doesn’t have a set schedule when it comes out. Although maybe with the neurotypical, they would be scheduled. One episode would be an hour and then it would be three hours and just all over the place.
Dylan Alter (50:57):
Either that or … I’ve been supported so much by structure in my relationships with autistic folk. There is an untapped opportunity for collaboration between ADHDers and autistic people that I’m just fascinated by. And of course, the folks who are dual diagnosis.
Lindsay Guentzel (51:13):
Yes. Again, so many of us with ADHD, that’s the question I think. It’s like, is there that dual diagnosis? And that is another conversation to have.
Dylan Alter (51:24):
Another can of worms.
Lindsay Guentzel (51:27):
Dylan, I could spend all afternoon talking to you. This was such a pleasure. I am so grateful for your time and your insight and for you sharing your gifts with us here on Refocus, Together. But for all that you’re doing putting out into the world for people with ADHD and working to build the community that you are, it’s just … Thank you seriously so much.
Dylan Alter (51:51):
Thank you for inviting me so much, Lindsay. And thank you for doing this project. I really hope that there are folks out there who hear interviews across the month and they’re like, “Oh my God, I relate to that.” And then have a touchpoint, a resource that they can connect to. And if there are folks that connect to this one, please find me at neuroqueer.org. Reach out. Send a contact. I’m here for the community.
Lindsay Guentzel (52:19):
Okay. Am I the only one who listened to that and is totally ready to take on the world? What an episode. What incredible insight from our friend Dylan Alter. Truly, I’m floored right now. Like listening back and hearing Dylan so confidently flip the conversation around to help me, to encourage me to find growth and self-acceptance, that’s a special person right there. And as a former high school cheerleader, I am obsessed with the pom poms. Because sometimes we need our people to show up for us and support us in a big way and pom poms just scream extra. I also love Dylan’s inspiration for the work they’re doing in their own life. This idea that every choice and goal and step forward is meant to help them hold less. We all hold so much, and sometimes I think we forget that we don’t have to be doing that. It’s hard. It’s definitely a hard lesson to learn and then actually put into practice in your own life. But Dylan laid it out in a way that makes it seem so accessible, so easy and carefree.
(53:33):
I also really loved reconnecting with the idea they threw out there. If we all thought about the place where we feel the most supported, the most able to be ourselves, a place that encourages growth and mistakes and grace and laughter, what would the world be like if we found ourselves in those spaces every day all day long? What would we all be able to accomplish if we constantly felt the way we feel when we go to those places that feel special to us? We without a doubt need more of that. We need to identify our own spaces and figure out what makes them special, and we need to encourage that growth and development so that we have more of those spaces to show up to.
(54:17):
My final takeaway, something Dylan said very quickly, but packed a pretty impressive punch was about self-confidence. They said, self-confidence at a certain point is just being efficient. For every single one of us who’s ever been told we’re too much or we’re too confident, or we’re too bold, or we’re too out there, your self-confidence, it’s really cutting out a lot of the work. A lot of the masking that comes when we try to please other people. And I love the way Dylan framed it because it is being efficient. Think about all of the different people we become throughout the day and what it would be like to take that person off our to-do list and just be comfortable and okay, being ourselves. That opens up a lot of time and energy and space for whatever you want out of life. I’m so grateful to Dylan for sharing their story with us.
(55:19):
You can learn more about them and the work they do in a couple of ways. First, check out neuroqueer.org. It is full of resources and events aimed specifically at supporting the neuroqueer community. You can also check out Dylan’s coaching resources by heading to alternativeadhd.com. And of course, as always, we have those links shared for you in the show notes. If you aren’t following on social media yet, we have a lot of really great stuff lined up for pride month, and we would love it if you would head on over to our Instagram account, @RefocusedPod, and give us a follow. Also, a reminder, the easiest and cheapest way to support this podcast is to give us the good old rate, review, subscribe wherever you’re listening right now. Or share the podcast with your social networks. Maybe it’s a favorite episode or a story you really connected with from Refocused, Together. It might not seem like a lot, but for us, those are pom pom moments and we do not take them for granted. And we’ve also made it easier for you to show us some love online. You can head to the show notes to find a direct link to share a review on your favorite streaming platform right now.
(56:40):
Thank you so much for listening to and supporting this podcast. If you’re new here, my name is Lindsay Guentzel. I am the host and executive producer of Refocused. A podcast all about ADHD. That would not be possible without the incredible talents of the team I get to work with every day, including Phil Rodemann, our coordinating producer who leads our live production, scheduling and audio editing. Sarah Platinitus, our managing editor responsible for leading our research as well as our guest and show development. Al Chaplin, our go-to for planning, creating, and organizing content strategy for social media. Support for this podcast comes from our partner, ADHD Online, and a big thanks to the incredible team of people I’m honored to work with every day, including Keith Boswell, Susanne Spruit, Melanie Meyrl, Claudia Gotti, and Trisha Mirchandani. Our show Art was created by Sissy Yee of Berlin Gray.
(57:46):
Our sound engineers are the incredible duo at EXR Sounds and Vision, Eric and Amanda Romani. And our music was created by Louis Inglis, a singer-songwriter from Perth, Australia, who was diagnosed with ADHD in 2020 at the age of 39. Finally, a big thanks to Mason Nelly over at Dexia in Grand Rapids, Michigan for all of his help in getting our videos ready to share with you guys. Links to all of the partners we work with are available in the show notes. To connect with the show or with me, you can find us online at Refocused Pod as well as at Lindsay Guentzel. And you can email the show directly [email protected]. That’s [email protected]. Take care of yourselves and please in an effort to reduce the unbelievable amount of stress we all carry around with us unnecessarily, be a little kinder to yourself this week.
