Transcript

Dylan Alter (00:19):

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 and neuro divergent. I have Jewish and Choctaw background. I was only diagnosed in my mid-30s. Building community around neuro divergent queer space is the best thing that’s ever happened to me.

Lindsay Guentzel (01:09):

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. I am so excited to hear a little bit more about yours.

Dylan Alter (01:23):

Oh, gosh. Thank you. Thank you. I’m so honored to be included in this. 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. I think sharing those stories of what it’s like does so much to normalize what we experience personally in our own minds and in those emotional rollercoaster. I just want to say thank you for doing this project.

Lindsay Guentzel (02:03):

Thank you. I am 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. The whole point of it is to raise awareness. What we know now is how different ADHD is for every single person. I think this is a great way to connect people who are missing that connection to somebody who lives life like them.

Dylan Alter (02:37):

Absolutely. Absolutely. Yes, 31 interviews in 31 days is absolutely one of those ADHD, “Sure, I’ll move the mountain.” If you find that you need cheerleading, let me know.

Lindsay Guentzel (02:51):

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 (03:06):

Sure. 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 privilege. I think that there’s sort of a deep irony as much executive function it takes to be able to access a diagnosis.

Lindsay Guentzel (03:29):

Right.

Dylan Alter (03:30):

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 had dealt with depression for about a decade, been in treatment for depression, been in therapy, 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. Meanwhile, the day to day was just a dumpster fire.

Dylan Alter (04:16):

I was an attorney, and I was great in court, and I was great in negotiations. But on a 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. I was the friend that people would call in an emergency because I would be reliably in an emergency and could absolutely handle it. Then my inability to consistently keep up with my friends undermined and degraded those relationships and made people feel like I didn’t care.

Dylan Alter (04:48):

I tried everything I could think of to make changes in my life, and nothing worked. I was really in a dark place of just frustration and depression, and just not knowing what to do. I 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. She asked me what my bedroom and office looked like, and I said, “Piles, but I know where everything is in the piles.” She said the most amazing words of, “Has anybody ever suggested ADHD might be a factor?”

Dylan Alter (05:35):

It was like a bucket of water being thrown on me, like no, nobody had ever suggested those things. I was excellent in school. Often we assume that ADHD is correlated with intelligence, and there’s absolutely no causal relationship whatsoever. 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 were a lot of hurdles and I had a lot of privileges as a white passing and masculine attorney raised by doctors to be able to advocate for myself.

Dylan Alter (06:33):

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 (06:49):

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. You don’t know what you don’t know. 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.

Lindsay Guentzel (07:32):

It is frustrating. You go back to everyone’s diagnosis story, and they’re so different. 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 (07:57):

Absolutely. 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. 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. Yeah, that dryer sheet that you’re talking about, absolutely.

Dylan Alter (08:23):

It’s just like cotton stuffed in. Then the analogy that kept coming up for me when I was explaining it to my therapist later was that it felt like I had been hurting 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. When I took the medication, they formed this delightful little queue and took a number.

Lindsay Guentzel (08:50):

That is a great image. The description of that, it’s like a beautiful cartoon.

Dylan Alter (08:57):

I’m a big fan of ADHDers’ metaphors. We just love it, the creative embellishments.

Lindsay Guentzel (09:07):

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 (09:22):

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. Once I got diagnosed and got on medication, I was lucky enough to find a therapist who specialized in ADHD. I also started a Facebook group for friends and friends of friends with ADHD, because we have this strange tendency to just sort of gravitate towards each other.

Dylan Alter (10:11):

If you have ADHD, it’s very likely other people around you have ADHD whether they know it or not, in addition to the genetic factors. In that group, more and more of my friends realized that they also had ADHD. 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. We started building community for queer folk with ADHD. That was an organization called Queer ADHD. Unfortunately, it’s no longer around. However, we needed to carry that space forward, that opportunity for community and connection, and support, and coaching.

Dylan Alter (11:01):

So, we’ve launched NeuroQueer.org, which is now inclusive of ADHD and Autism. It’s for adults who are LGBTQ+ and neuro diverse. 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. In addition to the opportunity to get education about our neuro diversity, we 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.

Dylan Alter (11:57):

We thought that that was the better way. 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. I have to make a place in this world where I can be myself that supports who I am.” 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.

Dylan Alter (12:31):

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. 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. We’ve got people from all over the world there. It’s amazing.

Dylan Alter (13:08):

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 neuro divergent first, that isn’t based on people pleasing or learning how to act like a neuro typical, but how do we function naturally. Then, what does that mean for how we can create our environment to support us.

Lindsay Guentzel (13:36):

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 am in a longterm relationship with someone who is “very neuro normal” and is very good at starting at A and going all the way to Z, and then never getting frustrated. So, I will say I hear dance party. I hear dishes. I don’t necessarily… I haven’t experienced that they go together, but I’m very excited to try it out. I very much appreciated how honest you were about the comparisons and 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 I haven’t experienced.

Lindsay Guentzel (14:29):

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 (14:41):

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.

Lindsay Guentzel (14:55):

You can push back. I am all about learning. I am all about growth. I think that has been one of the biggest gifts of my ADHD diagnosis, is knowing that the only way to move forward in life is to keep learning. So please, please push back.

Dylan Alter (15:13):

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 (15:31):

Right, yes.

Dylan Alter (15:33):

One of the things that ADDCA pointed out was that one of the most common character strengths for ADHDers is kindness and compassion. Any time that there’s this feeling of, “We don’t want to step on toes. We don’t want to take somebody’s experience,” but we want to relate. In neuro typical culture there’s idea that to relate is to take something away from someone, to take the attention away from them. I found that it’s sort of the reverse in ADHD culture. 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.

Dylan Alter (16:18):

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. 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 (16:44):

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 (16:55):

Right. Once you see it you can’t not see it.

Lindsay Guentzel (16:57):

My brain right now is just digesting that. I just needed a moment there because it was 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. My mother ran the household. My dad went to work every single day and was very good at it because it was so structured and so scheduled. The house ran because of my again “neuro normal” mother, who was very good at getting things done.

Lindsay Guentzel (17:32):

Oh my gosh, Dylan, my mind is just blown.

Dylan Alter (17:35):

Right. One of my philosophies around neuro divergent and ADHD support is not just to teach and create cultural accommodations. I heard somebody describe ADHD symptomatology as “all of the effects of ADHD that are annoying to neuro typicals”, and that’s pretty much what we have on paper in the DSM5, and there’re so many other factors to ADHD that Russell Barkley is teaching us about. Trying to figure out not just how do we people please and sort of do this drag performance of neuro typicality 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, very many black experiences of ADHD, Indigenous experiences of ADHD, queer experiences of ADHD.

Dylan Alter (18:40):

We’re finding just incredible aspects of this experience of brain chemistry, our nervous systems that nobody else seems to be looking at yet.

Lindsay Guentzel (18:52):

I just want to say, we’ve known each other for about 17 minutes and the energy you put out, it is so clear that what you’re doing is what you were meant to do. You mentioned your ADHD diagnosis is the best thing that’s ever happened to you because this is what you were meant to do. I just want to make that very clear right off the bat, that 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 (19:28):

I appreciate that. I appreciate that. I feel like nobody does wholesome appreciation as well as Midwesterners.

Lindsay Guentzel (19:34):

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. 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. For you, what has always been the biggest hurdle with your own ADHD and how it shows up in your life?

Dylan Alter (20:01):

Oh, wow. 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 neuro typical kids were taking Adderall off label, and I wasn’t. When I got diagnosed, there was some resentment there, I won’t lie. I honestly rather than ADHD being a hurdle for the California Bar Exam, I thank my hyper focus to getting me through it.

Dylan Alter (20:40):

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 hadn’t hyper focused I would never have gotten through it. 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. There’s the grief of what would it have been like, or those sort of things. 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.

Dylan Alter (21:32):

All of that negative self talk. All of that “Why can’t you just do this? You should work harder,” all that 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. 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 (22:09):

Just the second you said the grief and the self acceptance, it brings tears to my eyes because that is something I am struggling with so hard. I like to put on a brave face and pretend that I’m moving forward. And I am, but it’s still kind of 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.” That’s heavy. The fact that you’re there is amazing.

Dylan Alter (22:55):

I think being queer and non-binary gives a me bit of an advantage in that of I’ve grappled with senses of selves that were not authentic to who I was, but where basically a trauma response. For ADHD, 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. It makes all the sense in the world why we have rejection sensitive dysphoria.

Dylan Alter (23:33):

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. 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. 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.

Dylan Alter (24:39):

There’s this magical thing that happens when we stop expecting ourselves to be something and instead ask ourselves for what we need. 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.

Dylan Alter (25:18):

But if ask 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. I would love to.” 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 ADHD so that they actually fit who I am so they’re not an additional burden I have to carry.

Lindsay Guentzel (25:50):

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. 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’ve 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 doing the day? Do you make a list? Is it just kind of having that moment of clarity and alone time, and mindfulness?

Lindsay Guentzel (26:28):

I think of how my brain works, and I might have that conversation and then three hours later it’s gone.

Dylan Alter (26:35):

Absolutely. Absolutely. There is an aspect of ADHD that feels a little bit like some sort of time travel detective story of like what happened yesterday, what did I agree I would do? Of course, carving out moments for mindfulness, having [inaudible 00:26:56] of mind for routines, that’s a whole thing. I caution against giving sort of wrote instructions for these things because it’s so easy for us to people please, to play act. Then the system breaks down and we blame ourselves rather than the system.

Dylan Alter (27:22):

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 so choosing to have a moment to collect my thoughts, collect my sense of purpose. 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. Instead of this thing that I’m trying to remember to do, trying to force myself to do in that sort of 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.

Dylan Alter (28:14):

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 (28:38):

I love that, and so much 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, and you’re… 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. 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.

Lindsay Guentzel (29:15):

I think 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 (29:32):

Absolutely. I find that a lot of us will sort of 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?” Getting to that point where we are actually in control of our systems rather them being in control of us can make a lot of different, and it requires trying and failing, and taking that as just new information.

Dylan Alter (30:16):

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. 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 (30:44):

I like that you’re touching a bit on kind of 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 kind of 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?”

Lindsay Guentzel (31:31):

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 (32:05):

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, biggest challenges. Linear time is a cultural construct. From my Indigenous Choctaw background, I will tell you tribal time, at least in Choctaw, is very different. In 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 [inaudible 00:32:55].

Lindsay Guentzel (32:56):

Totally. 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 (33:16):

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. 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. So many people just don’t have access to being around other people like them.

Dylan Alter (34:12):

If you think about that, that’s just mind blowing. It’s assumed that we all have that. So many of us are isolated, and that’s just terrible for mental health. The energy there, and the love, and the care, and compassion, and comradery 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. I can’t not fight for that.

Dylan Alter (35:01):

I’d like to take credit for the idea of building that community space, but it’s not my idea. I learned that idea on how to build community from my queer elders and from my Choctaw elders, and from other BIPOC communities, the value of creating community when the rest of the world doesn’t support us.

Lindsay Guentzel (35:20):

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. We wouldn’t have been able to do that if we were 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 (35:49):

Absolutely. I think the pandemic ironically was an incredible gift for ADHD community and neuro divergent 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. 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. For the first time, we’re connecting with people on TikTok all over the world, which we still so 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.

Dylan Alter (36:35):

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. But I will say for a family of neuro divergents, a forest fire was a hell of a way to do spring cleaning.

Lindsay Guentzel (36:57):

I laugh because it’s true. Sometimes you just wish, I wish when I’m trying to clean things out, someone could just come over and take it all because if it’s out of sight, it’s out of mind. I’ll have forgotten it’s even there.

Dylan Alter (37:14):

There is that. There is that. I definitely get nostalgic about some things, but I think the object [inaudible 00:37:20] has helped me let that go. 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 forget 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 you can be in nature and just have that village experience.

Lindsay Guentzel (37:54):

I love that. 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. 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. That time, we had no idea that was something even within our range.

Dylan Alter (38:37):

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 [inaudible 00:39:06], it’s a word I read but don’t say often, of increased neuro plasticity. Of course, now we know that neuro plasticity extends throughout the lifespan. I think ADHDers are always looking for new ways to do things. Maybe because we’ve been frustrated by things again and again. 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 (39:53):

I think you’re spot on with that. Yeah, I struggled with thinking of all the things I could have done, and 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. It’s like moving forward with my ADHD is like I’m just going to do all of those things. I’m going to do them in a way that actually is going to work for me. It’s like accepting that.

Dylan Alter (40:27):

That’s so exciting.

Lindsay Guentzel (40:28):

It is. It is. 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 (40:41):

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.

Dylan Alter (41:31):

I know you’re interviewing me, but I’m very curious, what are you going to do?

Lindsay Guentzel (41:38):

Oh, goodness. What list are we talking about? There are so many things that I’ve wanted to do, and 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 that is 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. So, to start doing things and putting things out there without the fear of that one person whose yelling the loudest in the back of the room that I’m not supposed to be there, we’ve…

Lindsay Guentzel (42:22):

I think we focus so much on that one loud voice in the back, and just 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 (42:40):

Right. Right. Absolutely. Absolutely. Do you also find that 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. It worked out. It was great.”

Lindsay Guentzel (42:57):

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, just complete self annihilation from first grade. To know that there are people who walk around life that aren’t dissecting trauma from first grade, like every single of their life, it’s like I am so envious of you. That is amazing. You can’t be mad. You’re just like, “Gosh, that is good for you. Heck yes.”

Dylan Alter (43:33):

Yeah, I think for me it’s sort of just, “That must be nice.” I can’t even comment on it.

Lindsay Guentzel (43:40):

I was having that conversation once with a friend. We were talking about neuro typical people. We were actually talking about our significant others, and how we were explaining to them once what anxiety felt like. They had no idea what we were talking about. 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. 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 (44:15):

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 like “I hear that you wish that went differently.” I’m glad that you’re advocating for something different.

Lindsay Guentzel (44:36):

Working on it. I also am in therapy with someone who specializes in ADHD, and I think it’s so important that we all find what works for us. Sometimes I think people think of therapy as this very stuffy, very Frazier 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 (45:06):

Absolutely. I’m so glad you brought that up because I was in therapy before I was diagnosed with ADHD. I had a therapist who would just sort of sit back and let me talk. Of course, because of ADHD I can talk a blue streak forever. I just sort of felt like I was on display, or a zoo animal. They wouldn’t relate. 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. It’s night and day. I’ve made so much more progress in my couple of years with her than I made in a decade with other therapists. 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, it can just make a world of difference.

Dylan Alter (46:04):

I’m so glad that you’ve got a therapist whose working with you, and that you’re empowered to make it what you want it to be.

Lindsay Guentzel (46:11):

I want to ask you one question before I get to my final question for this conversation. I’m hoping we can go back because one thing in the time speaking with you that I just find so powerful is how confident you are in yourself. 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 (46:39):

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 introvert at home by myself. 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. I think that that’s something a lot of ADHDers experience, but also something that a lot of folks from oppressed identities experience. When you’re queer, often unlike oppressed racial identity, is you’re sometimes born into a family that doesn’t share the same trait. I was always a tomboy. I couldn’t have been a femme cis woman no matter how much anybody paid me, and there are some very awkward photos to prove this.

Dylan Alter (47:37):

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. It didn’t even get off the ground. I think that there was something in there about trying to be something that I’m not that would hit that rejection sensitive dysphoria. It would just make me feel even more misunderstood. 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 kid and growing up, and really had to settle with. I do think that that built a lot of resilience and a lot of self confidence because this is just what it is.

Dylan Alter (48:25):

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 than trying to be yourself and however many other identities you’re putting on to please other people. 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 (49:07):

It’s a lot.

Dylan Alter (49:08):

It’s so much. It’s just efficient. Self confidence at a certain point is just efficient.

Lindsay Guentzel (49:16):

That is such an interesting way to look at it. I have never heard it described that way. You’re right, it’s the easiest way to go about it.

Dylan Alter (49:25):

Right. 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 (49:32):

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, or what they should keep in mind when they’re thinking about ADHD, or spending time with someone who has ADHD, what is that little nugget that will help them understand it better?

Dylan Alter (49:56):

In 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. 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. It doesn’t really work to tell people, “Go out and be inclusive,” because we don’t know how yet.

Dylan Alter (50:52):

It takes relationship building. 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, especially if you’re a neuro typical 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. 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 have considered from this narrow perspective of “Okay, let’s go through the checklist.”

Dylan Alter (51:52):

Neuro psychological 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. 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 whose Autistic and a neuro typical, and the name of the podcast is Wait, You Do What?

Lindsay Guentzel (52:23):

It’s what, three hours long and it doesn’t have a set schedule when it comes out, but yes. No, I love that. I love that. Although, maybe with the neuro typical they would be scheduled. They would just… One episode would be an hour, and then it would be three hours, and just all over the place.

Dylan Alter (52:47):

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 am just fascinated by, and of course the folks who are dual diagnosis.

Lindsay Guentzel (53:04):

Yes. Again, so many of us with ADHD, that’s the question I think. It’s like is that there dual diagnosis? That is another conversation to have.

Dylan Alter (53:16):

Another can of worms.

Lindsay Guentzel (53:19):

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 your sharing your gifts with us here on Refocus Together, but for all that you’re doing and 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 (53:43):

Thank you for inviting me so much, Lindsay. Thank you for doing this project. I really hope that there are folks out there who hear interviews across the month and are like, “Oh my God, I relate to that,” and then have a touchpoint, a resource that they can connect to. 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.