Last updated on November 26, 2023
Podcast 0015; Season 02, Episode 01; September 4, 2018
We open Season Two chatting with Grayson Rumsey, a 20-year-old autistic self-advocate, creative writer, performing artist, and member of the LGBTQ+ community. Grayson has dealt with more in 20 years than I have in nearly 50. We should admire Grayson and the strength reflected in this podcast episode.
Transcript (lightly edited)
Scott: Hello and welcome to The Autistic Me. I’m Christopher Scott Wyatt speaking as The Autistic Me and today we’re being joined by Grayson Rumsey, an autistic self-advocate, writer, and creative artist who brings to the podcast a younger perspective and the perspective of someone involved in the arts.
Scott: Grayson, it’s a pleasure to have you on the show.
Grayson: Thank you for having me.
Scott: I met Grayson through his involvement in Bricolage Productions’ Forest of Everywhere. And Grayson got involved in that through the Joey Travolta Film Camp, he’s involved in poetry and some other forms of self-expression, So I’d like to begin our discussion with the misconception that autistic individuals are not creative artists.
Grayson: Yeah. A lot of people’s ideas of autistic folks, interests, and personality come from very one-dimensional stereotypes about autistic people. You know, that were all very hyper-focused on realism and rationality, that our interests have to do with like science and math and numbers. But, you know, in reality, autistic folks interests are just as varied as allistic people and so an autistic person is just as likely to be interested in performing or poetry or something as allistic person is.
Scott: And you bring a younger perspective that has seen autism reevaluated and changed especially from the DSM IV to DSM V. Do you believe that that’s an advantage for your generation?
Grayson: I do, to be honest, because a lot of the issues with how the previous DSM in the previous generations sort of conceptualized autism was making so much more of a distinguishing line between high-functioning and low-functioning folks and not really seeing it as a spectrum of all sorts of different skills and deficits and traits. And I think that like being able to see it more as a spectrum is something that’s really helping a lot of autistic people to not only to embrace our autism but also to live more effectively in the world and it’s like engage in our interest more effectively and play to our strengths.
Scott: One of the things that my generation has experienced and many of the people I’ve interviewed are other diagnoses before being diagnosed with autism. Commonly depression, schizophrenia, and other conditions that can mirror the autistic traits. What was your journey to the autism diagnosis?
Grayson: When I was two they tried to do diagnosed me with OCD.
Scott: At two?
Grayson: Yeah, which was not correct. I’ve had a bunch of diagnoses over the years. I didn’t get diagnosed with autism spectrum disorder until I was about… Well, at first I was diagnosed with Asperger’s when I was about nine. That was removed from the DSM with the newer revision. I was just switched over to autism spectrum disorder. A lot of autistic people do have a lot of comorbid conditions because of how difficult it can be to grow up as an autistic child and have the world not accept you in that way and I do have several comorbid mental health conditions. There was also some misdiagnosis in the early years because autism wasn’t accepted or none about.
Scott: But you had the Asperger’s diagnosis at nine. So unlike many of the older adults I speak to over 40, you have grown up through junior high, high school, and beyond with the knowledge that you were neurodiverse.
Grayson: Yeah
Scott: And was that helpful or not?
Grayson: It’s a really complicated discussion there because on the one hand, yes, it was because understanding something about yourself is really integral to not only accepting it but also working with it and being able to, not necessarily fix it, but a help support myself in the places where I have deficits, but also having that diagnosis was, at some points, it was very difficult and even traumatic because of how it made other people treat me especially in the medical and therapeutic communities. I was lucky enough to never go through actual ABA therapy. But even so the therapy that is designed for autistic children, even the very open and helpful and new sort of therapies can be incredibly traumatic at times just because of the focus that they put on fitting in as opposed to individuality and accepting yourself ends the focus that they put on obedience and that sort of thing and so in that way and especially when I was younger and more involved in the medical side of therapy and such, it could be very very difficult to go through life having that label.
Scott: Could you discuss the exhaustion that comes from passing for normal that was being demanded of you even today?
Grayson: Yeah. Yeah. Oh God. Yeah, I went through a lot of periods of severe burn out over the years. Even when I was a kid before my diagnosis, you know, I would have times, very long periods where my parents would praise me and my teachers would praise me and I would be making friends and I would be behaving in ways that were totally accepted and “normal” in society and I would be really, really happy about that and just try to push it further and further and then, you know, eventually after months or even years sometimes it would just be like complete meltdown. Complete burn out. I wouldn’t be able to function at a couple of points. I failed my first ninth grade year of high school because I just got so burnt out and exhausted that I stopped getting out of bed in the mornings for months.
Scott: When I discuss autistic burnout being a very real phenomenon, people will ask, “Why is it so tiring? You’re just acting normal.” And I think they forget the acting part of that.
Grayson: Yeah, I would put the emphasis there on acting. I used to have conversations with my biological mom. I’m not really speaking to her anymore and this is one of the reasons that I am not speaking to her, but I used to have conversations with her, because she is also probably an undiagnosed autistic, about how she said she’s acting 100% of the time. There’s never a time when she’s not literally putting on a show for everyone else and she often, you know, encouraged me to do the same thing and to think of going into the world as acting. And I don’t think she realized how exhausting that is for me.
Scott: And when you entered the performing arts and writing to discover yourself, I guess and in a different way, express yourself, did that allow you more freedom, oddly enough, because it’s a different type of acting and a different type of expression?
Grayson: In a way, yeah. For one thing, my experience at the Joey Travolta Film Camp was like how I sort of got into acting as a whole and that camp obviously is incredibly accepting. You never have to act like anyone else there and that has always been a space where I feel incredibly safe. And then once I got into the wider world of acting… I don’t know if you know this, but actors are really weird, just in general, and the space that the arts provide really does seem to be a space where it’s so much easier to not try to pass as normal. I mean, there is still social pressure and there is still difficulties, but overall, the arts scene, at least in Pittsburgh, is just so much more diverse and it’s so much more neurodivergent and also queer, that I feel much more… I’ve always felt much more free and much more at home there than in non-artistic spaces.
Scott: You mentioned the art scene in Pittsburgh and the first play that I had produced here in Pittsburgh was at Bricolage about a gay gospel singer who had to obviously be closeted because a gospel singer in the 70s would not be out. And I found that Pittsburgh was more open to discussing not just neurodiversity but diversity in general, even though it has a lot of diversity issues as a city. But the arts community seems to be resisting the very thing that Pittsburgh is surrounded by.
Grayson : Yeah, I think that I’ve definitely one thing that I didn’t mention was race and I think that the arts community has a really huge racial problem in Pittsburgh, like it’s very white.
Scott: And like theater everywhere, white and older.
Grayson: Yeah.
Scott: In the audience.
Grayson: Yeah, but I think that I’ve been involved a lot in the DIY punk scene in the general Indie music scene in like overall, uh, the visual arts scene. And a lot of those, especially the more DIY and underground you go, the more they really are incredibly diverse and accepting.
Scott: And how does that acceptance of who you are beyond your autism help you address being an autistic self-advocate?
Grayson: I feel like ever since I found more of like a community who accepts me for everything that I am, not just autistic, not just queer, not just all of these other things but like everything that I am? The more I’ve realized that I can use all of these aspects of myself to advocate to make a better space for myself in the world
Scott: Even at your age, and you’re in your 20s?
Grayson: I just actually just turned 20 last month.
Scott: You are already having to advocate for yourself. And these are fights that those of us who came ahead had hoped you wouldn’t have to do and yet you’re still having to advocate for yourself.
Grayson: Yeah.
Scott: With family, friends, schools. What are some of the barriers that you find that you’ve had to step up and be an advocate for yourself.
Grayson: I actually recently faced a lot of problems in finishing my senior year of high school because of my decision to not talk to my biological family. I was an IEP student, an individualized education plan, and because of that, because I was a disabled student with an IEP, I was expected to have my biological family be on my IEP team and to be living with them in order to finish out my year of high school. Originally, this was just something that I was going to put up with but, just everything at home escalated and I couldn’t be there anymore, uh for my own like mental health and safety, and I spent a couple of months actually fighting with my school and with my biological mother to get her taken off my IEP team and to be able to finish out my year of high school without her. I was also 19 at the time, which made the whole problem that much more ridiculous because I’m a legal adult. And just the amount of pushback there is towards disabled adults, having independence and being able to not only advocate for ourselves, but just like just plain live without relying on especially family support. There’s there’s a lot of push back to that and it’s really really frustrating to deal with.
Scott: When navigating friends and family, one of the issues young people bring up is the doubt that they are autistic and that instead, they’re simply lazy or unfocused. Is that something you’ve had to deal with?
Grayson: I’ve never had my family specifically doubt that I am autistic, but I have had my family doubt that my symptoms are actually a result of my autistic traits and not laziness. Um, so things like executive dysfunction and stuff like that. I’ve had a lot of arguments and fights with both my family and with some school professionals and stuff like that over whether or not I actually am having executive dysfunction or if I just don’t want to do the work. Things like that. Like if I actually can’t do something small like tidy the house in a certain way or if I just don’t want to, so I’m being stubborn, etc.
Scott: The challenge of executive functions and the combination of that plus comorbid conditions… you mentioned struggling to get out of bed.
Grayson: Yeah.
Scott: After burn out. And you mentioned that sometimes the autism can exacerbate the feelings of depression, loneliness.
Grayson: Yeah. I um, I’m also diagnosed with Type 2 bipolar disorder and I have a chronic immune condition that can lead physical exhaustion and things like that. So, uh, when you combine, you know autistic burnout with a deep depression or autistic burnout and a physical-like symptom flare, it’s just I have horrible days sometimes.
Scott: I find myself sometimes arguing with autistic self-advocates because I don’t look at the autistic traits as a blessing. When I see t-shirts that say things like super aspie I always want to cringe because I know it’s not right to blame the autistic traits, but there are a lot of times where I doubt my abilities and my skills at navigating the world. Do you find yourself embracing the autistic self-advocacy or do you also find yourself saying I can be autistic and I can also say I need help.
Grayson: My self-advocacy really embraces both the good and the bad. I really see autism not as like some sort of superpower but also not as some sort of like disease. It’s really just another way of existing and like every way of existing there are benefits and there are deficits and there are things that I need more help for than other people might. I don’t really necessarily… I try to avoid thinking of autism as a wholly negative thing because I did for years and it was something that really contributed to my self-image issues and my self-hatred. But I also don’t want to go back to another phase I had where I never wanted to ask for help and I was always like I can do everything on my own and I don’t need support. I don’t need anyone else because that’s just not healthy either. And there’s a lot there’s definitely a lot of things about autism that mean that I do need help sometimes and that’s okay.
Scott: If you were to talk to other young people listening to this, how would you suggest they go about learning more about themselves and their autistic traits and their other mental differences, their neurodiversity, to navigate the world successfully? How did you go about finding that path to success?
Grayson: Honestly, a lot of it was just a lot of reading. I read a lot of blogs. Um, not only by neurodivergent folks. I read blogs by queer folks. I read blogs by physically disabled folks. I read all kinds of personal accounts. And the ones that I connected with I read more and I sort of just tried to find other people that I could connect to, that I could look up to, and not feel so alone in my experiences. And that can be difficult, especially if you have a less supportive family or you’re not in a great place economically or whatever. But it honestly, just a lot of online communities really did save my life when I was younger and then as I got more out into the world, finding communities in real life that I could be in that were accepting and open. It made such a huge difference.
Scott: As you move on now into early adulthood, what would you like people to know about Grayson Rumsey and where you’re headed?
Grayson: Even I don’t really know where I’m headed. That’s a bit of a uh, a bit of a mystery right now. But I don’t know. I really, I really hope that I can continue working in advocacy, working in disability, working in queer spaces just to continue to try to make these spaces where people are accepted or people can be themselves and to really just create families, you know. To support people. And I want to keep making art. I always want to keep making art.
Scott: I think one of the wonderful things that we can take from the queer communities is the idea of family. We have to create our own family because a lot of times we’re not fortunate enough to be embraced by the people who call themselves family.
Grayson: Yeah.
Scott: And I think that’s really a tribute to your maturity that you’ve recognized that you have to sort of assemble a family.
Grayson: Yeah, and I consider myself incredibly lucky I’ve been able to do that.
Scott: And before we end this podcast, I would like to say you are carrying yourself so well and so maturely at this age and you’ve been through so much. I wish that things had improved over the last 20 years more than they have.
Grayson: Oh, so do I, but I also appreciate the progress that we have made because it is still significant. Even if it’s not as much as we wish for.
Scott: I look forward to speaking with Grayson Rumsey again in the future. I think Grayson has an exciting future ahead as a self-advocate and an advocate for all of us. You’ve been listening to the podcast The Autistic Me. I’m Christopher Scott Wyatt, and I’d like to thank Grayson Rumsey for joining us. Thank you so much.
The Autistic Me on Social Media
- Blog: https://www.tameri.com/autisticme/
- Podcast: https://autisticme.libsyn.com/
- Facebook: https://www.facebook.com/autisticme/
- Twitter: https://twitter.com/autisticme
- YouTube: https://www.youtube.com/c/CSWyatt
- LinkedIn: https://www.linkedin.com/company/autisticme