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THE SJ CHILDS SHOW
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THE SJ CHILDS SHOW
International Autism Summit Session-Navigating Life and Advocacy: A Professor’s Journey with Undiagnosed Autism
What does it mean to truly support someone with undiagnosed autism? Our latest episode promises a journey through the eyes of a humanities professor from Metro Detroit, who has navigated the complex terrains of life and academia without the clarity of a diagnosis until the age of 41. Discover how survival skills from a challenging childhood turned into indispensable tools for creating an innovative humanities department and fostering community support. Through their storytelling, you'll hear how an Appalachian upbringing shaped their empathetic approach to teaching and organizing.
Our guest candidly shares the often-overlooked realities of living with undiagnosed autism, especially within the realms of marriage and parenthood. This episode dives deep into the personal transformations that occurred post-diagnosis, revealing how simple yet profound micro accommodations and community support played a pivotal role. The account highlights the immense energy required to "fit in," and how therapy and new coping mechanisms provided much-needed relief and understanding.
But it doesn't stop there. The discussion expands into the realm of autistic rights advocacy, where our guest's dedication to creating resources like a non-speaking communication aid is both inspiring and practical. Learn about the founding of a grassroots organization aimed at empowering the autistic community through research, advocacy, and tangible support. Finally, the episode offers a heartfelt reflection on the impact of late diagnoses on personal relationships, touching on the crucial and often silent intersection between autism and mental health. Join us for a powerful session that champions resilience, open-mindedness, and the transformative power of acceptance.
I was so glad to be getting this incredible different perspectives and different ways of being able to look at how we can support ourselves as individuals and our loved ones who are autistic. And if you're ready, we will bring our next guest up to the stage. Oh hello, oh hello, Hello, hello Hi. Thank you for being here today.
Speaker 2:Everything good on your end. No, yep.
Speaker 1:We see your slides and we're good to go, so we will exit the stage and let you continue with your presentation. Thank you for being here today, and we're just so excited and grateful we're ready to learn, so show us what you got.
Speaker 2:Well, thank you. So I'm here today to kind of talk about my personal experience and some of my current research that I've been doing on the human side of autism. And so when I sat down to work on this presentation and just polish, I was asked by my HR department to re-prove that I had autism every six months. So that came up kind of out of the blue, and so as I've been working on this, I've been embroiled in the fight yet again. So it almost was a reminder, and so I had to sit down last night and when I grabbed some spoons in order to do it and make sure that this was the most up-to-date information possible, so I do title this here Be Dragons. And if you're not familiar with the idea in old maps, when some of the theories are when, when the old cartographers did not know what was beyond this area, they could simply write here be dragons. And no one would venture past a keep out sign. And so when I think about my experiences over the last five years, I do want to put up a little bit of a sign. But I also know that by our nature, some of us in the that that that are on the spectrum, by nature. We are adventurers, sometimes, even if it's virtually, and so sometimes when we see that beware, don't go there. Sign, it piques our interest and our curiosity, and so I thought what better way to title this than here we Dragon. So a little bit about me, my professional experience.
Speaker 2:Professional experience Um, I teach at a Metro, uh, a community college in Metro Detroit, um, and I've done so for about the last 20 years. Um had, uh, very teaching experiences. Up until then I'd done some community organizing. Um taught overseas. Um in Ghana. Um taught K-12, a blink of an eye, dysregulating environment anyone.
Speaker 2:So I originally was hired as an English teacher, taught writing, had come to English, as most people do in a class that they were forced to take. And so, as an engineer, I took an English class and I realized when I was sitting in the class and the professor would ask well, we know this character is nervous, how do we know? And I would look around at all my classmates and none of them are answering and I'd say well, his hands are in his pockets, his eyes are shifty, he's fidgeting with his hair, all of those signs that I had learned to read as a child to know if I was okay in the environment if I was doing the right thing, right, all those little micro cues that we take in and we absorb. And I learned that, holy crap, this is a skill. What I used as a survival tool was an actual skill. So when I switched to English, I also knew that I was able. I hoped I was able to find a, a college teaching job and I was.
Speaker 2:But always my interest was in why? Why do other humans do what they do? Why am I different, whatever? And so I kept, because my job afforded me tuition assistance. I kept going to school and I kept studying new things, and so I got degrees in political science, philosophy. I went. After I got my doctorate, I went and got certifications in disability inclusion. You know, I'm even studying design now, and it's just the idea of again, when I have a special interest, I can go and kind of study it. And I am now a humanities professor.
Speaker 2:I created the department. It existed at one time at my college but it had kind of gotten pushed off into a basement somewhere. And so I asked well, what about this? And helped create the department, helped write multimillion dollar grants with the University of Michigan in Ann Arbor and even had you know kind of rose to the level of you know head of you know had kind of rose to the level of head of their section of the college, that's for the best and brightest students. And I was kind of running independent research with students, I mean, doing some amazing things international art competitions, and there were engineering and art and journalist students that had never poured metal a day in their life and they were pouring metal and the whole idea was, you know, I was, you know, doing what I was hired to do, which was to innovate education was to you know, take you know humanities education to another level and in that process, you know, there were other personal things, right, that, as my career was going, life was happening and this is what happens. Right, and looking back in hindsight, my wife and I were able to kind of piece together the timeline and we see that, you know, when you look at my story, it's the typical undiagnosed story, right, I was born in an area where weird is okay, and so in Appalachia, you know, quirky, odd, different, it's kind of a badge of honor and that's acceptable as long as you're our quirky, and so the community would kind of a badge of honor and that's acceptable as long as you're our quirky.
Speaker 2:And so the community would kind of protect me and they would provide little micro accommodations, little small ways of just saying, well, you know, he doesn't like to sit on that chair, so let him sit in that chair. Yeah, we're going to turn down the lights, because these kids don't like the lights. And those types of things were just taught to me as the things you do for the people around you, because that's community and all of these kind of Appalachian values. And I just thought this is how people work, right, Because that was what I was locking in as the rules, went to college, met my life partner and we got married at 25. And it was a big change for me because I had all these little schedules that I didn't know I had, that I didn't do anything on Sunday, I didn't go anywhere, I listened to Johnny Cash, I stayed in my pajamas, I read the newspaper, I read some books, watched my safe movies and recharged for the week.
Speaker 2:But you want to go. When you love people, you want to do what they want to do, you want to take them to the places they want to go, not knowing what that does to you, when you've naturally adapted these systems for yourself, that then don't work to integrate other people into your life, and that's probably why the statistics are the way that they are for our community, and my wife will tell you wholeheartedly that it has been a rough hoe for 20 years, but we had a child 10 years ago and obviously, obviously, even the ways in which she was able to accommodate and, really honestly, um, you know, step aside and let me just do my thing because she knew that the dysregulation that would come after was worse, right, Because I was upset all the time and everything was everyone's fault, right? And so when we had a child though you can't always control the environment and so when those cries would happen and when those unexpected things would happen, I would freeze. I had run camps of 300 kids. I had, you know, worked in some high stress, high speed environments, you know kitchens and you know and had been in places where there were dangerous things that had happened and this had never happened to me and I would freeze. And so, yeah, and when we started on the kind of path to, you know, seek diagnosis for my daughter, we also were there's a lot of correlation here, obviously, and when I was diagnosed at 41, I call it the most life-changing nothing that ever happened to me and that was given to me by one of my friends. One of my friends who was a doctoral student at Rutgers and she was saying you know, it's going to be the most life changing nothing that ever happens to you. The world is going to change around you and through your eyes and they're going to see the same person and so those things that you were able to do before, that maybe now you couldn't do because the glass has been broken and you realized that you were faking it and you were dissociating while dissociating, while you were faking it, um, that wasn't there anymore. I can't, I don't have that life raft anymore. Um, if I wanted to do that, I don't think I could, which is a good thing. I'm happy right In that. Um, that unknowing for the first time, which is a good thing. I'm happy right in that unknowing for the first time.
Speaker 2:But post-diagnosis, I am down half my size, I'm no longer taking the meds and all this other stuff, and I think that this is again typical when you look at the undiagnosed story, all of these things that happened to us on the way to finding the answer in this kind of late diagnosis world. And so I provide the evidence here the two-year difference when we're working in therapy and the therapist is like well, maybe you know, your stimming is is oral. You know, maybe we can work on getting you some jewelry Right, um, and so I've got this. You know, this nice little piece of jewelry that no one knows is jewelry until I stick it in my mouth and then I don't care.
Speaker 2:Um, at this point, um, and so you know I, I kind of jokingly offer this up as visual evidence of you know again, when I learned to kind of connect, because, you know, again, the ASD affects our communication with others, obviously, but it affects our communication with ourselves and self-care tasks. You know, eating, all of these things that we do, but sometimes because it's almost an afterthought, and so all of those things that you know I locked in and had learned, I didn't realize all of the amount of energy I was using to do those basic things and to appear functional, right, for whatever that means in the world. And so when I, you know, when I work at an institute, you know, work at a place or in a kind of field, that is about evidence and about knowledge and about understanding and about inclusion. You know you hope that then that's met with the same. And initially it always was on the individual level. For the most part, it almost always is.
Speaker 2:When I disclosed, a lot of colleagues would be like, yeah, yeah, and you know, some would be, I think the best, were kind of like, so what, and that matters, you know, and not in a dismissive way, but almost in a matter of fact way. And so when I think about the advice I would give because this is something that I do often to younger professionals, I constantly see this image in my head. Constantly see this image in my head because, like Charlie Brown, I still line up to kick the football, I still give it a shot. Um, because, no matter how and this is, you know, maybe the Appalachian in me but no matter how much manure they shovel on to me, I'm going to look at that and say I can use that as fertilizer for something. And so, you know, I would basically advise people, when they think about disclosing at work, to seek their legally guaranteed rights.
Speaker 2:Yes, getting out on a record is important, right, but you've got to be able to explain your needs and fight for those needs. And in that process because our amygdalas are the way our amygdalas are you can't lose yourself, because there are times where you're so set on the goal of being right that being right and getting what you are supposedly owed can destroy all those things around you, right? Those tenuous other things that you have built families, careers, even hobbies, right, I don't know. I'm so excited because in the last year I've been able to sit and watch movies again. My doctoral dissertation focuses on how ideology is taught through movies and I haven't been able to watch a movie in two years. Not just the dysregulation, but all the other things spinning in the way. And I'm trying to deal and I'm trying to work the system that is not built for me. And even now, when I'm in the throes of office communications and I'm having trusted confidants say, yeah, you're misreading this, that's that. There's no, there's no facetiousness there at all, there's no sarcasm there at all. And I'm like, wow, okay, so how was I navigating the world all this other time? Now, again, my brain's telling me don't trust them. So you know, and I'm kind of thinking is that my amygdala? Is that not? So again, just don't lose yourself because we get stuck in there. But I think the most important thing is that whole fertilizer manure metaphor, because that was what.
Speaker 2:When I was doing the research on what I needed and why I needed it. Because that's what they asked me you want these accommodations? Well, why would you need accommodations as an autistic college professor? And then I came across this stuff about the comorbidities and the suicide rates and the mortality rates. Okay, and this is. This is this is you know one source that utilizes other sources? Right, there are tons of kind of conflicting numbers out there, but not tons of research on this. So I would like again, this is.
Speaker 2:This is where I, when I came to this and I said, oh my gosh, this is why I was in a cardiologist's office having whatever they call it, right, it wasn't, you know, an infarction or anything, but it was an episode, right. And the intern comes back in and says it's all psychosomatic, something's up. But he didn't say psychosomatic, but he basically said this is not medical. At this point, there is something that is triggering you to have these things and I was having anxiety, panic, meltdown, constant stage, like a little deer, constantly ready to flee Um and again. You can't sleep or even heal when you're in those states. So it makes sense that when you look at cortisol levels, when you look at the effects that this has on the physical body, right, um, living undercover, essentially. So when I saw that I said I have to do something. Um, and that's when I, you know, online I've been able to meet some wonderful people from all walks of life, places of the world, and I contacted some of them and I said let's do something about this.
Speaker 2:We are autistic, we've got autistic kids, we've got autistic, let's keep them here Right. And so we, we, we started this kind of foundation and in the last six months we've been able to do a lot with, with the little that we've gotten. We've gained 2000 in, you know, individual donations and we just received a grant from Walmart, you know, a couple of weeks ago, a community building grant. But we've been able to produce research, we've been able to publish, you know, attend conferences, even submit testimony to Congress, and so in the past six months, you know, with a team of three, you know with a team of three, you know, three determined autists, late, you know, identified and diagnosed autistic adults who said no, we're not going to let that happen to others, what happened to us. And so, you know, we kind of created this. We've been working on, then, creating resources for the community and resources that the community can have, and and so, again, my background's in seeking grants, my background's in in finding money in order to innovate, and so that's what we're doing right now and we've started that process.
Speaker 2:But you know, one of our first and our favorites is right there in the middle of the screen there. This is our non-speaking communication aid. That you know, I was kind of just working around with something and I just kind of prototyped some stuff and I sent it in. My daughter wanted it for her water bottle. She said this will be great for the other ASD class. I can communicate with kids. It's going to be awesome, let me put that in my water bottle.
Speaker 2:She comes back eight hours later and says dad's garbage. Nope, everyone in the class tore it up. We've got notes and she sat down and she took me through the notes. Too many emotions, there's too much going on. We can't communicate these basic needs. And by the end of the night we had that little sticker in the middle which we use as mouse pads, which we, you know, and again, we kind of you know hand out whenever we go places, because, again, you know, we know that being heard, being recognized, that idea, you know, that was aforementioned about behavior being communication. You'll see our little PB&J graphic down there. We talk about, you know, giving people a snack when they're dysregulated, you being patient, you focusing on their behavior as communication, not as anything other than that, and being present in the moment.
Speaker 2:And so I'm a humanities professor. I've learned about human structures, I've learned about religions and politics and all of these things that are seemingly unrelated, but it's attitude, it's understanding how to, or how people have utilized attitude and my dissertation I did mention that my dissertation was on Marvel, the Marvel Cinematic Universe, but it was how one could look at that as a moral text, how one could utilize that in a world where you can't maybe use a religious text in a classroom, you could utilize those heroes and superheroes as metaphors for philosophical discussion and that, because they act that way, they also send us messages and they, they, they. Art influences life, life influences art. So I think that you know those skills can be utilized and so we're utilizing, you know, that kind of background and doing some qualitative research, because a lot of the research that I have found on suicide in the autistic community and the resources that we have. It usually focuses on not understanding the reason and then, when you look at the research on how to regulate, it almost dismisses the personal benefit. You see a lot of discussion of, well, these fidgets or this resource sensory room was beneficial to the individuals, helped them, made them feel more accepted, all this other stuff, but it didn't raise attention, it didn't raise productivity. Therefore we can't say it's effective. I want to reframe that research because you've proven something, you've shown something, but you're just not looking at the right answer that you found, because you're asking a different question. And I think that if we can ask the questions, then you know we can get closer to some real answers.
Speaker 2:I'm hoping, I'm hoping. So that's kind of what we're doing with within the foundation or what I have done with. You know my personal experience and I said well, if, if these institutions are going to be used against us, then let's create our own institution. And we've done all kinds of things that we've had to even pull back on, because our idea of what, what a foundation or what rules or what a charity is, are based upon a world that wasn't built for us.
Speaker 2:And so we, we said no, we're having a hard cap of over, you know, or of you know, you know, our overhead. We're having a hard cap of a four day work week. We're having a hard cap of this, I mean because we want to do it different, because it needs to be done differently, and so that's kind of what you know I, when I think about there being dragons, um, and the parts on the map that are unexplored, I'm ready to go, um and uh. I know that it may be a one-way journey, but, uh, we, we've, we've got to do it, we have to. So, and I and I thank you for for giving me a chance to uh, to share that with you- Sorry I was muted.
Speaker 1:It was so great that was a wonderful presentation and we did have some comments um that were going on during going on during. Some of them were mine. So I love your stories. Wow, I said your picture, I think, was what it was Brenda said. Such an interesting gift this has been for you, adam Sounds like a relief to have this clarity.
Speaker 3:Yeah.
Speaker 1:And you know in my own personal journey the same thing. When I found out my diagnosis and it was my husband who noticed he said, oh my gosh, you're not startled by everything anymore, like I think, your sense of freedom is gone. It took him and me a little bit of room to get comfortable with the fact that I'm not on my toes anymore, waiting for everything to happen around me.
Speaker 1:I'm settled in my skin and in myself and I don't think I've ever even been happier as a human than I have been in this last two years. Oh yeah, that's me saying thank you. So, yeah, I think that the way that we can get together like this and share these, these stories and anecdotal kind of lessons for people to take from so important. Thank you so much for your time today.
Speaker 2:Thank you for allowing me the platform to do so, and I appreciate everything that you're doing. I've I've been enjoying, um, you know what I've, what I've seen this morning? It's awesome, I love this, I love this. This is, and this is where I've. You know, I've said repeatedly, um, you know that these virtual environments, this is a world that is built for us. I mean, like I can, I can, I can walk away from a social situation, come back to it, go upstairs, get some spoons, come back and be like okay, now I'm ready again, Right.
Speaker 3:I mean not in real life.
Speaker 2:But I love this, the exploration aspect, which is why, like I said, I couldn't help but think about those old maps.
Speaker 1:I couldn't help but think about those old maps. That's beautiful.
Speaker 2:I think that it's really special that we can see each person's journey and you know where kind of they pick up that inspiration and that passion and just run with it.
Speaker 1:Yeah, yeah, very much so, thank you. Yeah, my pleasure, mia. Any thoughts you had going on during that?
Speaker 3:I just love his freedom. I can just tell like something switched and you could just see it all. Once he got it, it was like I don't care, I know how to do this. Now I know how I can apply. Oh, it just came through the phone Like I can just oh, I love it, I love it.
Speaker 2:Thank you, and I said it's very cliche but it is. I was telling my partner the other day that it's one of those you know all my life and now I've been prepared for this moment and it seems like I have the perfect toolbox for it. I'm ready, you know, so, yes, it's weird, it's weird, but I think it's good.
Speaker 3:Yes, it's very good.
Speaker 1:It. Yes, it's very good, it's very good, absolutely Wow.
Speaker 1:The thank you so much, I mean just the amount of of hugs I want to give everyone. Um, thank you, thank you, thank you. I can't say it enough. It just I'm so humbled by this experience with all of you, um, to give your time, give your you know, with all of you, to give your time, give your you know you're volunteering your time. Let's put that out there, number one, we all are, and all for the purpose of creating this community for ourselves, for our loved ones, for the individuals we care so much about, individuals. We don't even know that we want to pave a better way and an easier place for them to walk in these steps. So, just thank you so much and honor you for being here. And yeah, what a wonderful day and amazing, amazing event. Adam, please come back and join us in the comments and come and say hello, to watch some other sessions and, of course, if you've missed anything, you can already go back this morning and watch replays of any sessions. I was.
Speaker 2:I was already on there checking them out.
Speaker 1:Oh, my goodness.
Speaker 2:I don't have enough tissue boxes.
Speaker 1:Wonderful Well, thank you again so much and and yeah, really enjoying our time here today. Thank you, absolutely, wow. Bye-bye. I leave with chills, you know, each time I get to hear these stories, and especially my relatability to these adults with late diagnoses and being able to say yes. That sense of relief, that sense of connection with my husband who's on the spectrum, and to know that, like it's 20 years I've been with this guy, how can I feel any closer to him? But no, today I feel closer to him than ever before that is beautiful.
Speaker 1:That is beautiful. It's such magic and I think it can only happen with having, you know, our open mind and an open heart to be able to accept things for the reality of them, the challenges I love. Our next presenter is here and going to be coming up next night. I think that it's beautiful segue from what Adam was just saying into Bridget's session, in that you know we'll be talking about, um, oh my gosh, I just saw a comment from my husband in the comments. I'll get to that. But, bridget, you know, coming up next we're going to be talking about the intersectional of of autism and suicide, and I think that you know Adam touched on that and I think that it's so important and like a serious topic that we really need to draw experience from and just listen and be mindful to help our fellow autistic community.
Speaker 1:You know individuals out and thank you so much. I think that he's right Both of us getting diagnosed was the best thing for our relationship. It really that's my husband, dustin. Thank you, I love you so much. You're my best friend in the world. I know how lucky am I. I was just such a lucky person.
Speaker 3:You know, sarah, I was thinking too. I got diagnosed with a learning disability but I didn't find it out till senior year. And when he was talking I was like you do live in a fog because you're thinking you're nuts, something's wrong, you're crazy, and you know. You know you're not getting it, you know you're not understanding, and you know, and I had this beautiful, wonderful counselor who finally said, hey, let's get her. You know, we went through all the tests and everything, but it was such a relief like OK, now I'm not crazy and there's nothing wrong and something just got lifted off and I thought about that. It's
