Discovering Neurodivergence in Adulthood

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LINDSEY WELLS, HOST: From KVMR and in partnership with FREED, this is Disability Rap.

AMANDA KENNON: I think too often we get caught up in the trap of, "Oh, I'm neurodivergent. That means I struggle and I can't do these things," or, "Oh, I'm neurodivergent. It's my super power. I can do amazing things."

WELLS: Today, two people who identify as neurodivergent, they share what neurodivergence means to them and how it impacts their daily lives.

JOHN LEIMGRUBER: I do find neurodivergence, especially autism, is a useful lens to view my experiences, develop strategies to help organize my life.

WELLS: That's all coming up on Disability Rap. Stay tuned.

CARL SIGMOND, HOST: Welcome to Disability Rap. I'm Carl Sigmond with Lindsey Wells.

WELLS: Neurodivergence is the recognition that not all brains work the same way. It's a broad spectrum of brain behavior that is outside of what's considered standard or "normal." Many of our listeners may be more familiar with the term autism. Autism is a form of neurodivergence. Neurodivergence encompasses a much wider spectrum of brain function and behavior than autism does. Autism is already a wide spectrum. We're going to get into this and more with two guests who I both identify as neurodivergent.

Amanda Kennon is an American Sign Language interpreter who lives in the Philadelphia suburbs. She, who has a neurodivergent child, was inspired to embark on her journey of self-discovery about how neurodivergence has impacted her personally and in her professional life. She is currently working on research on neurodiversity in the interpreting profession along with her friend and colleague Dr. Laura Polhemus. Her ongoing research includes the experience of neurodivergent interpreters and consumers.

John Leimgruber grew up in the Midwest in the 1980s. He turned his developing interest in computers into a master's degree in electrical and computer engineering. He now lives in Philadelphia where he enjoys exploring his interests including computer gaming, mysticism, polyamory, and psychology. While not professionally diagnosed, John identifies with late-diagnosed autism.

Before we begin, it's important to note that neurodivergence manifests in every person differently. As is our custom on Disability Rap, Amanda and John will be speaking primarily from their own experiences and not necessarily representing the neurodivergent community at large.

SIGMOND: Amanda and John, welcome to Disability Rap. It's great to have both of you with us. We want to begin with a broad question and then we will dive in more. Briefly, what does neurodivergence mean to you and in your own life? Amanda, we'll begin with you and then bring John in.

KENNON: For me, neurodivergence is just recognizing that all of us have brains that work differently and we all view the world in different ways. There's that label of being "neurotypical" and "neurodivergent". The neurodivergence is what's considered "different" from the norm. When you look at the bigger picture of neurodiversity, we can start celebrating all these differences.

SIGMOND: John, what about you?

LEIMGRUBER: Thanks, Carl. Thanks for having me. I totally agree with Amanda. It's about celebrating the variety of the ways human brains work. As much as I believe in individual differences being often broader and larger than any category, these categories can be useful for self-identification or in talking about ways people might prefer to be in the world. There can be some value in the labels of neurodiversity and the different groups. It's very evolving.

I recognize the DSM-5 and the ICD-11, I believe, are certain diagnostic criteria, but even not necessarily in a clinical view, in a social view, in cultural view. There's a lot of research just happening on Reddit, and people talking, and a lot of information out there, and podcasts like this. I think it's really great. Thanks for having me in this conversation.

WELLS: Amanda, when did you first think that you might be neurodivergent, and what was that process of discovery like for you?

KENNON: One of my children received a diagnosis several years ago when she was in first grade. As we went through the process with her, we had gone through earlier intervention for some speech services and OT services. There's always this question mark of is there something more going on or not? When we formally received her diagnosis in first grade, we were not surprised at all.

As I started going down this rabbit hole of, "Now we know she's neurodivergent. What does that mean?" As somebody who loves learning, I just wanted to learn all about it. That's also probably why I'm an interpreter because I like learning new things. As I was on social media, and the internet, and reading books, the more I read, the more I went, "This sounds really familiar."

Then, of course, part of that learning process was learning that children who are neurodivergent are highly likely to have neurodivergent parents. I went from there. I started reflecting on things I experienced in my personal life, and my professional life, and realized that other people were having similar experiences. I connected with some other sign language interpreters who are also neurodivergent, and learned that they had some of the same struggles that I did in my career.

From there, I started identifying as neurodivergent. I'm like, "This explains a lot." As John mentioned before, sometimes people hate on labels, but they can be helpful in some ways. I started this process and around the same time. I connected-- rather I'd say reconnected with my friend and colleague, Laura. She had asked me about mentoring one of her students who is also neurodivergent. Then as we started talking and realizing the absence of research in our field, and that nobody was talking about neurodiversity in the sign language interpreting profession, we said, "No one's talking about it. I guess we should start something." Then we did our first presentation and started doing our research study.

In the midst of all of this, I got connected with a fantastic neuroforming therapist and went through the whole evaluation process myself. I'm fortunate to be in the privileged position where I had that access to healthcare and have the insurance to be able to go through that process as an adult without the financial burden. We did a full range of assessments. Officially, I was diagnosed with ADHD. They also were like, "Could maybe also be autism," because, of course, with ADHD and autism, there's a lot of overlapping traits.

From my perspective, and seeing as somebody who is in my late 30s and has already gone through school and a good part of my life, I realized that whether or not I had an official diagnosis for autism didn't necessarily matter as much as if I had an ADHD diagnosis, the medication could become an option to help with my executive functioning struggles in my everyday life. That was one of the big motivators for me was, "Yes, I want to learn more about myself, but also, what can I do to make my own life more manageable for me?" That was a big driver in seeking the diagnosis.

WELLS: John, can I bring you in here as well? Same question, your background with neurodivergence and how you came to know about it for you?

LEIMGRUBER: It's only more recently that I've begun to identify as self-diagnosed autistic. There's a whole politic around self-diagnosis and everything else, as Amanda mentioned. I currently don't have healthcare, and I'm not working, and so I don't want to pay out of pocket for that process, but have taken a number of online screening devices like the RAADS-R. There's a number of these devices that you can use for self-assessment as well as reflecting. I've talked to people I grew up with who were counselors in my school and different things like that. Reflecting on my own history, I did go to a speech therapist when I was younger in elementary school. I had a difficult time saying Froot Loops, I still have to pause. Froot Woops is so much easier to say.

More or less, a lot of the research on autism was happening I would say in the '80s, '90s, early aughts. Reflecting now, a lot of people in my age generation, I'm a geriatric millennial, [laughs] I think more likely missed, especially people who are identifying as female or those types of gender differences too. Also, I did well enough in school that no one cared if I had a label. [laughs] I don't know how to put it. It wasn't until later in life when I was more recently recognizing my own struggles.

I've been through periods of underemployment and unemployment. There's a concept of autistic burnout. That's something I've been reflecting on a lot more recently. A few people my age have gone through the diagnostic process and I was surprised that they identify as autistic, or AuDHD, sort of a ADHD mixed with autism type, which is only more recently did people realize that could be a thing. Before, it was totally separate. It's a very fast-evolving field, I would think.

Regardless of a formal diagnostic, I do find neurodivergence, especially autism, as a useful lens to view my experiences, develop strategies to help organize my life in a way to be able to live and even admitting that there are supports that could be useful. I try to be careful because I'm a tall white guy to recognize my privilege. At first, I was very nervous about identifying in any way or taking up space in a place where maybe that is not welcome. I also recognize that, in general, at least in America currently, identifying as autistic even formally, doesn't guarantee you much benefits of any kind. I don't think I'm using up any space, so to speak there, for better or worse.

KENNON: If I can just add as John was speaking, I really appreciate all your comments. It just made me think about a few things. I too am what people would call a geriatric millennial, although I prefer Zennial because that sounds way cooler. That said, I think there's a lot of us in that generation of, "We did well enough," or I don't know about you, John, I know I was tested as "gifted" and was the honors in the AP classes and all that. Even in high school, look, I remember feeling like I was the slacker and-- I felt like the slacker in the overachieving group. Then later, when I was in graduate school, and it was the late 2000s, early 2010s when highly sensitive people, HSP, was a really popular label.

Now, as I read more stuff, people are like, "Oh, yes, people who are used to be considered still HSPs, actually, they're divergent," and I'm like, "Okay. Yes. This is all starting to make sense. The pieces are coming into place." I won't speak for John, but I know from my experience of just talking to a lot of people, especially female-presenting individuals, I guess there's been some research specifically about the hormonal changes related to perimenopause for that piece. Then on the flip side of that, a lot of people our age as we came out of the pandemic, I think the collected trauma of the pandemic triggered a lot of things in a lot of us.

I know the pandemic plus during the pandemic, I moved and had another baby. I clearly got through life very well for a very long period of time. I just feel like within a couple of years, a lot just started falling through the cracks in my life. I do think a lot of it has to do with the pandemic. I've heard similar stories from other people as well.

LEIMGRUBER: I'm nodding a whole lot here. I would argue that some of my symptoms, it's harder to hide. My garden's out of the ability to-- I believe the term is masking or camouflaging. It's a way people pass in the world. A lot of times, the more normative a person might appear or present, there's certain benefits to that. That can be more difficult. I agree completely that COVID and staying at home for years definitely changed my patterns.

SIGMOND: Amanda, I have a follow-up for you. I think it might be helpful for our listeners. You mentioned some struggles you had personally and professionally that helped you acknowledge that [unintelligible 00:18:05] at the moment I might be neurodivergent. I'm wondering if you could share a bit about those struggles.

KENNON: That's a great question. Like John, I too was in speech therapy as a kid. That's probably the earliest thing, clue, that I remember. Beyond that, especially when I was talking about post-COVID post-COVID, I felt like one of the big things during COVID was just my executive functioning falling apart. As I mentioned, I'm a sign language interpreter. I'm actually a freelance sign language interpreter. That means I work for different agencies. I have my calendar. I have to submit invoices to certain places on certain days. I have to keep track of emails.

Moving from the DC area where a lot of the agencies used scheduling systems where you could just go in and click the jobs you're available for versus moving here where the agencies want you to tell them regularly when you're available, and having to remember that follow up of, "Oh, I need to send them a message to let them know I'm available next week."

Things like forgetting to submit my invoice, obviously, it's great to submit your invoice and get paid. It really helps if you remember to do it. There's that piece. Then as I'm starting to realize things and I was looking back, I think about some of the social things. I know people joke about interpreters and also people with ADHD being the kids who got in trouble for talking in class. Yes, they did. There was that. There was a lot of feeling on the outside of the friend group, and being on the fringe of the group, or during college when people were picking roommates, feeling like no one wanted to be my roommate even though I had friends. They didn't want to be my roommate.

Probably one of the biggest things that I learned about that was a huge epiphany moment for me was learning about something called RSD. It's rejection sensitivity dysphoria. Basically what that means is being very sensitive to feedback and taking things very personally. I'm somebody who throughout my interpreting career, I get feedback, and I would always take it very personally. Sometimes it would be upsetting to me. I think the perception I got, and then the follow up feedback I got was Amanda doesn't take feedback well. People took it as I didn't want feedback to become a better interpreter, when in actual reality, it's just like I cared so much, getting that feedback hurt me that deeply.

Now, being able to recognize that and to start separate. Now, that I have a word to describe it, and as John mentioned before, sometimes labels can be helpful. Realizing that I can label this deep feeling I'm having as this, and of course, yes, the feedback is valuable, and I'm always grateful to receive feedback from other interpreters and from consumers, especially those in the deaf community. Also, recognizing that I have these deep feelings because of my brain and my neurodivergence.

In the past, sometimes I would get feedback, and it was very easy for me to spiral. Realizing that some of these deep emotions in recognizing them for what they are has been helpful for me to take a moment, take a breath, and be like, "Okay. What can I learn from this," versus, "Oh, my gosh, I'm the worst interpreter ever. I should just quit now," even though I've been an interpreter for 17 years. I would say, probably, the executive functioning and the rejection sensitivity dysphoria are probably the two biggest things.

As I said before, as I've talked to other interpreters in the field and other people who are neurodivergent, it's been very enlightening to learn how other people have similar struggles. It's not just me. Maybe that's the other big piece too is that imposter syndrome, and realizing that other people feel like an imposter too is in some ways-- You don't want people to feel that way, but then it's also reassuring to know that you're not the only one feeling it.

WELLS: That's a very interesting thought you just had. I want to bring in John at this point. You both mentioned being gifted as young people. Can I have some of John's thoughts about having that ability of being gifted and how you learn from that space as a gifted student with being neurodivergent yourself?

LEIMGRUBER: Wonderful. There's a concept called 2e or Twice-exceptional. I didn't know all this stuff until a few months ago when I just listened to every podcast and read every book, because that's what I do when I get interested in something. Twice-exceptional means that a person may fall outside of the realm of normativity as described by the bell curve as they say. It's not necessarily exceptionally amazing or whatnot. It's just exceptional as an exception.

A person who maybe has neurodivergence and a physical disability could be considered 2E. A person who has the label of gifted and also a neurodivergence can also be labeled as 2e. It can present some struggles, because if people see you doing well on a test or in school at a young age, they may think, "Oh, this person doesn't need any supports," but in other areas of your life, you may be struggling. I know I as a kid, my mom would tell me-- it was hard to get me to take a bath and stuff, basic hygiene things. I was more interested in just keeping doing what I was doing. Having inertia.

It can be confusing for people around me to be like, "Oh, he seems really smart, but he has a hard time doing just basic stuff," or as Amanda mentioned, yes, submitting your invoices on time. Those types of executive functioning can be a struggle for a person. If I'm working on something I'm really interested in, it's easy. It doesn't feel like work. There can be some disparity in how that presents.

WELLS: I have a follow up question, if I may. Amanda, I totally hear you about the Zennial. I'm a Zennial myself. I totally relate to that. You mentioned earlier, and I wanted to bring this up really quickly. Do you think we fell through the cracks as children that were of that particular age? John and Amanda, you both identify as Zennials, from what I'm gathering. I'd like to know, how did your schools necessarily deal with your neurodivergence? The way you had to tell them in your own way what was going on. How did the school handle that?

KENNON: The biggest thing is we don't know what we don't know. Then you hear the expression the more you know. As John mentioned before, there's a lot more research, and there's been tremendous research in the last few years. Social media, for all the good and bad with it, one of the good things that comes out of it is this sense of community, and this accessibility to learn about other things, and to learn that there are these other communities even if it's not in your immediate vicinity.

As I mentioned before, I didn't realize this that I didn't official-- I wasn't officially diagnosed till about a year ago. It was only a couple years before I even realized it and had this conception of, "Oh, this is what neurodivergence is, and I think this might be me." When I was in elementary school, I received speech services for a couple years, because there was a couple sounds that were hard for me. Beyond that, and at some point, they give all the kids the test, and they send a letter home to my parents and say, "She tested gifted. Do you want her in the gifted program or not? She did this score on the math test, so she can take this math class or this one."

A lot of us who are these, especially older millennials got put on these tracks from a younger age of this is what you're supposed to be, and this is what's expected of you, and you're taking this class, and this class, and this class, and then you're going to college because that's what you're supposed to do. We were told that college was the answer to everything. If we just go to college, our life will be perfect and great.

There's that piece of these expectations that were set for us. I've told other people this before, I call us the perfect attendance generation. We weren't taught to think about our mental health. We were told show up every day and get a certificate at the end of the year. That was the end all and be all. Then when we headed into the workforce, we were like, "Oh, this is what we're supposed to do. We're not supposed to be sick. We're not supposed to have mental health days. We're not supposed to be human."

Again, especially post-pandemic, a lot of us have changed our perspective on these things. Back on my experiences in school, I remember the beginning of my junior year, I really struggled with my classes. My Spanish teacher told my mom that, "Amanda wasn't paying attention in class. She's just playing with her hair." Looking back on that now, I'm realizing I either was just struggling or maybe it was a form of [unintelligible 00:29:21] where I was playing with my hair to try to pay attention, but I didn't have the words to explain that then.

I'd get in trouble for having the TV on in the background while I was trying to do my homework. Things like that. Looking back on it, it makes sense. At the time, I was just like, "Okay, I'm getting in trouble-- I got in trouble with my parents for talking back. I got in trouble for playing with my hair and not paying attention in class," and these smaller things which now I'm like, "Oh, it was probably this." At this point in my life I can't go back and change it, but I can do better for my daughter and teach her the strategies and the words I didn't have.

The only other thing I was going to say too, I wanted to add as far as going back to one of John's earlier comments, if that's okay, was thinking about how we all have our different areas of strengths and weaknesses. When I first dove into these things, when the first infographics I saw that really got to me, it was talking about how neurodivergence and autism, when they talk about it being a spectrum, it's not a spectrum like a straight bar from beginning to end, low to high. It's more of a circle where each piece of a pie is a different area.

Some people may excel with social skills, but they may struggle with executive functioning, or they may have strong logical skills, but then struggle with the self-care things. Recognizing that it's not a binary beginning and end thing, but it's we each have our own strengths and weaknesses is really important to acknowledge too.

LEIMGRUBER: With what Amanda was saying about the spectrum not being necessarily just a line, there's a concept I like of a spiky profile where when I was in school, there were some things that I could do quite well on. I would test above average, so to speak. Then spelling is still very difficult for me. I might be good at certain things, but then pretty bad at other things. I was able to generally skate by leaning on my strengths or emphasizing those strengths and ways to get through in school. That always helped.

SIGMOND: Thank you both. There is so much in there. I've got the question for John. Before I ask that, I just want to note for our listeners that Amanda was using terms and referencing things that are known in the neurodivergent and autistic communities that might not be common terms in society. We do have a transcript of this show on our website, disabilityrap.org. I encourage people to look that up and do some of your own research. John, before we began the recording, you were talking a bit about how you relate your neurodivergence to your awareness and your identity as polyamorous. I'm just wondering if you could share a bit about that in the little time we have left.

LEIMGRUBER: Thanks, Carl. Definitely. There's a profile of autism called PDA. I like to call it a Persistent Drive for Autonomy. Though originally, I believe it was coined in the '80s, '90s as a Pathological Demand Avoidance, which I don't like that label quite as much. I recognize social norms and hierarchies, but I often don't relate to them. As such, while I identify as he/him, cis heterosexual male, the hetero parts a little questionable. I do have long hair. I present as a not stereotypically masculine way, I would say. I love to wear pink or sometimes loud colors. Purple is beautiful, the color of royalty.

At some point, I was married. I'm divorced. I often would say I reprogrammed myself. I thought a lot about the history of monogamy, where it comes from. I ask way too many questions to all of my friends. [chuckles] I like to go to the source. If there's a book that's older, I'll try to find the oldest book. I love collecting information and knowledge. I love that you have a transcript of this podcast. I might feed it into my bot. [laughs] I like that kind of thing.

At some point, I began to identify as polyamorous, meaning that I think it's perfectly fine to love more than one person in a romantic or aromantic way. There are many ways to identify. Partly, I'll be honest, I didn't learn any of this in sex education in public school. You have to read a lot of books. There are some people who are asexual as well, who don't experience sexual attraction. There are just so many beautiful ways to be. Polyamory, for me, is a way to have a higher amount of free time for my own personal interests.

The person I date, I've been dating for over seven years. We're in a relationship. They live with their other partner who has a similar name as mine. It's kind of fun. Even within the construct of polyamory or relationship anarchy, and those types of things, I do believe there some correlation, I'll say, between neurodivergence and the poly community are just anecdotally speaking.

WELLS: Can I have a follow up for both of you? How would you share your words of wisdom for those that are neurodivergent or identify as neurodivergent?

SIGMOND: Or think that they might be.

LEIMGRUBER: I would say try it out. It sounds strange, but sometimes if you have a feeling and you think that there might be something you can learn that would help you out for strategies to get through your day, strategies to-- for example, I now have earplugs that I wear to lower the sensory stimulation. I don't feel so bad about telling people, "No, I don't want to hang out." I don't feel so bad about telling people, "Hey, I don't want to talk right now. I'll text you. Maybe I can text, but I don't have energy to talk." Those are things that I wouldn't have felt had more difficulty doing or think that I have to be in a certain way.

If you think you may be neurodivergent, just do some reading. However, what format you like, if you don't like reading, there's podcasts like this, social media as Amanda mentioned, and just follow your heart. Try it out. It's okay to change your mind, honestly, with any identity. Many people will try one out, see how it works, if it helps them, if not, and you maybe will move on and decide maybe you aren't. You can't go wrong here. Don't be afraid and just follow your heart. That's my advice to everything, really.

KENNON: All of my reading, especially, and stuff I found on social media, one of the things that really impact me a lot was I saw-- I can't remember now if it was a post or an article. It was talking about the power of and. I think too often we get caught up in the trap of, "Oh, I'm neurodivergent, that means I struggle and I can't do these things, " or, "Oh, I'm neurodivergent, and it's my superpower, and I can do amazing things." Recognizing that both of those things can be true at the same time is important. To also recognize that day to day might be different too.

I think whether or not you're neurodivergent or neurotypical, we all have our good days and our bad days. Just trying to figure out what works best from you in learning from your experiences and learning from other people's experiences.

SIGMOND: Thank you both so much. This was an excellent conversation.

LEIMGRUBER: Thank you. I really enjoyed it.

KENNON: Thank you for having me as well. It was nice to meet everyone.

WELLS: That was our conversation with Amanda Kennon and John Leimgruber on their experiences of neurodivergence.

That does it for the show. Disability Rap was produced and edited by Carl Sigmond and Courtney Williams. You can go to our website, disabilityrap.org, to listen to past shows, read transcripts, and subscribe to the Disability Rap podcast. You can also subscribe to our podcast by searching Disability Rap on any of the major podcast platforms. We are brought to you by KVMR in partnership with FREED. We're distributed by PRX, the Public Radio Exchange. I'm Lindsey Wells with Carl Sigmond for another edition of Disability Rap.