Speaker 0 00:00:21 Welcome to FreeWheel in with carton. This podcast shares stories of people with various disabilities and shines a new light on accessibility topics. Our goal is to knock down barriers so we can roll through life a little easier and build a community to do this together. Please rate and follow this podcast or text card at (470) 588-1215. With comments and suggestions. We welcome you on your journey towards inclusion for all. And now your host carton, Wyckoff global disability advocate and wheelchair warrior.
Speaker 1 00:01:22 Hey, and welcome to free, willing with carton podcast. I'm your host card and white cough wheelchair warrior disability advocate. And we talk about how to make the world a more accessible place on this podcast. And we interview guests with different disabilities or people working in the disability space. Today. I have Becca Laurie Hector, who was diagnosed on the autism spectrum as an adult and has since become a dynamic autism advocate consultant, speaker, and author with a focus on living and active positive life. Her work includes autism and neurodiversity consulting, public speaking engagements, a monthly newsletter called monthly musings, a weekly YouTube news show called neuro-diversity newsstand and being an assistant editor feature writer for spectrum woman magazine. That guy has published multiple articles and books about the life on the autism spectrum with the goal of spreading acceptance, building, understanding and encouraging self-advocacy. She said four years supporting the autism community and the nonprofit sector in her work for grassroots organizations that provide resources and services directly to individuals on the autism spectrum.
Speaker 1 00:02:32 Becca left non-profit to pursue dual certifications as a certified autism specialist, CAS CAS, and a cognitive specialist of BCCs and to open her autism and neurodiversity consulting business. She is an animal lover with a special affinity for kitty cats and Becca spends most of our free time with many of her animals, her husband, Antonio, Hector, and their emotional support animal, sir, Walter underfoot, sir, Walter under vet travels does woofing engagements and has his very own Instagram to help share with the world about his life as a emotional support animal to an autistic adult. Please also go ahead and download the app. I access the life a mobile app on Google play for Android and the Apple app store to rate, interview places to build transparency in the built environment. And you can use referral code cartons, C a R D E N two of my good friends designed it and developed it.
Speaker 1 00:03:36 And they are based in Atlanta. I access life with a referral code card in my name. I hope you enjoy the episode today and let me know what you think you can DM me on Instagram FreeWheel and with carton. Hi Becca. Thanks so much for joining free, willing with part in podcast. How's it going? It's going good. Thanks so much for having me appreciate it. You're welcome. Yeah. And I know we've had a few scheduling in this house over the last few months, but I'm so glad that you're here and that we get to talk about your journey and having autism and what that has been like. I read a number of your blog posts, how you were diagnosed later in life and also being a female who has autism and as autistic. So, and you're kind of just navigating this kind of like male dominated picture, perfect autism world. And so I'd love to just hear more about your journey being diagnosed. So I'll give you the floor. All right.
Speaker 2 00:04:38 Well, my diagnosis story is for me, it was life-changing in the big picture of women getting diagnosed. Right? I had a very lucky journey. I was lucky to live where I lived when it happened and just, you know, I had a bunch of things aligned for me, in which case it worked out very well for me. I am not necessarily the way that it goes for everybody. So this is just my example of how it went as a child was struggling. Nobody really knew how or where to put the things I was struggling with. They didn't seem to fit any categories for anybody really. I grew up in the eighties. So when I was growing up, we freely use the R word all over the place. You didn't touch people like that. They went on separate transportation. I mean, it was really nasty and that's how I was raised.
Speaker 2 00:05:25 And that's how everyone was raised in the eighties. I guess at the time I was going to New York city public schools, they had an expectation of sameness for everybody. I think all schools at the time did have an expectation of sameness. And so I was having lots of internal struggles and some struggles at home, but it didn't really start to become like a problem until I was in school school. And then I was having uneven profile issues, meaning that I was really struggling in math, but I was hyper Lexic and hyper verbal and reading. And so I was beyond adult level reading, like I was in third grade, but I couldn't keep up with my math classes. And then the response from adults was rather than saying, well, I wonder why she's struggling in math. It was, you must be lazy and stubborn and manipulative and math, and you just don't want to do the work because if you're that smart in reading, you must be that smart in math.
Speaker 2 00:06:16 That was the way that thinking was back then. Right? We didn't talk about uneven profiles. We didn't talk about learning disabilities. Really. We didn't talk about the idea that, you know, people could be twice exceptional, right? That they could have a disability, but also be incredibly intelligent at the same time. So we didn't have any of those terms on top of it. When I was growing up the way autism was described, the way it was diagnosed, the way that we looked for it. And what we knew about autism at the time was very limited. It was a limited profile. Doctors were looking for little boys, preferably non-speaking little boys who were creating behavior problems in the classroom, usually white boys, particularly also. And that was what was being looked for. So as a young autistic girl, I presented very little issues for people. I was a reader, so I was happy to sit in the corner alone and read my books.
Speaker 2 00:07:10 I would go wherever, as long as I could take a book. Right. And that kind of stuff, which now that is the cell phone for kids. Right. But for me it was a book. Right. And that's what I did. I took it everywhere with me. And that was okay with the world because I was quiet, little girl doing this, you know, intellectual little thing and not bothering anybody. Right. But instead of looking at it, like I was too afraid to be out in the world. Right. They were like, Oh, what a good little girl. And so nobody was really looking for me. And that's part of why I think that I missed diagnosis. I think if I was being raised now, the red flags that were coming up would have been obvious to people. So that's kind of what happens all my life. That's going on.
Speaker 2 00:07:48 I turned 18 in 1994 and 1994 Asperger's syndrome hits the books. And so it was right. Just passed me like ships in the night, I went out into the world as an adult. Everyone wanted me to go to college, but because of my uneven profile, I didn't believe I was smart enough to go to college. And I didn't. So I went off into adulthood, took a year off, eventually was pressured by my parents to go to college, went to college, had an entirely opposite experience in college, as they did through elementary school, I was able to study the stuff I was interested in and at whatever pace I wanted to study. And that was very freeing. And that allowed me to succeed in college a way that I had never succeeded in regular school before, but getting out of college presented another transition. So that was another bump in my road.
Speaker 2 00:08:34 And every time these transitions would happen, these big red flags would happen. I would have shutdowns breakdowns, I'd have to go see a therapist, get medication, whatever, you know, whatever was happening. There was always like the cycle of it. I got into law school, started law school, hated it and left. And then I just kind of went out into the employment world. And I have an employment record that is identical to most women who are early diagnosed. I did 13 different jobs in 15 years. Anything from commercial to construction, to executive assistant, to vet tech, to bartender, I've done it all. I've always done well at my jobs. I can always pick up the skill set. I've always been okay in the interviews, but after I'm there for a couple of months and I've learned everything that I need to learn and I get really good at it, bullying in the workplace always occurs.
Speaker 2 00:09:21 And that's usually when I make my exit one way or another. So that was my work cycle two. And it was a very unhappy life. I became over time, very disillusioned about human beings as a whole, about being a human being myself. It just about everything. And at that last job that I had to leave, I remember like, I talk about it. Uh, like I remember hearing my brain crack. Like I remember the moment in the meeting when I went, Oh my God, I literally can't do anything else. I give up. And I walked out of that job and I crawled into much AltEd bed in my mom's house. And I didn't get out for three years. I was suicidal should have been in a hospital, but she didn't make that choice. Um, I had plans everything right about that time. After about the three year Mark, I had had some physical struggles.
Speaker 2 00:10:09 I'd always had migraines and my migraines were changing. So I was journaling about it, doing some research about it, trying to figure out what was going on, but because it was home bound, it was all on the internet. Right. So I did Wikipedia, I did everything. And eventually I ran into sensory processing disorder in, in that war tax of things. And that felt really familiar to me and really comfortable for me. And I was kind of surprised. And at the bottom of that article was an article on Asperger's syndrome. And when I read about Asperger's in Rome, I felt like I'd read my bio. I wanted to know how people had watched my house, my whole life, like what the hell is going on. And in that rollercoaster ride of 30 seconds, reading that article, I knew that the, it, that had troubled me through my whole life, the big it, this was the big and it all made sense.
Speaker 2 00:10:57 Um, I sent the article to my mom, she read it and said, what do you want to do? That, that you found it, you finally found it. So it fell into my lap in a way where I wasn't looking for it. I'd never really, when I thought of autism, I thought of that typical way. We describe autism that counter autism that we talk about that went to another school for me, right. That was the picture of autism in my head. And the idea that I could fit into that category would never have occurred to me right until I read about Asperger's syndrome. And so I know that for whatever reason, that's the way it was supposed to be. And that's how I stumbled into my diagnosis. Um, and it saved my life, literally saved my life, like from suicide to not suicide. And I know that I am very lucky and I'm very lucky that at the time or that I did, it was raised and born in New York. And I was in a really highly populated metropolitan areas. So there were a lot of more professionals available to me, a lot more nonprofits to me than most people. Um, and I was able to find a clinician that diagnosis adults and also knows about women.
Speaker 1 00:12:00 That is quite a story for sure. And I really want to break it down because there's, there's so much richness in it, just from the way that society views you and labeled you early on and classified you as this, you know, lazy or stubborn person all the way to, you know, self doubt and normal sabotage right before college, but in college, you really thrived. And do I understand that during college, or was it out of college, you kind of face some of those transitions that triggered you to shut down and have those, those breakdowns.
Speaker 2 00:12:40 I think most of us that get to the point of adulthood before we get diagnosis, we kind of, we talk about, and also then we talk about three different things. We talk about meltdowns, we talk about shutdowns and we talk about burnout. So a meltdown is what we typically hear about when we read about it. And you know, the news, right? The kid who has the temper tantrum in the class, in the supermarket, right. And all the mom's so embarrassed, right? Oh, it's not a tantrum, it's a meltdown. Right. And they are there, different meltdowns have a different cause and they serve a different purpose than a tantrum. So they are markedly different, but that's the most common, I would say. We have them very visibly as children. And that becomes more and more internal or private as we get older, they don't go away.
Speaker 2 00:13:23 The next sort of phase from that is what we call a shut down. So that's more like you've spent a day or a couple of days doing stuff that's really difficult for your brand of autism. And it's just exhausted you to a point where now you can't really function anymore. You are out of spoons, period. I can't do like your personal hygiene and feeding yourself and getting out of bed. And all of those things, you've pushed yourself kind of to depletion to that point, shut down three, usually more temporary. They can be somewhere between a day to a week or even a couple of hours. And when we talk about burnout, that sort of like the last phase. Right? And so imagine you've sort of run the cycle of having meltdowns and having shut downs and still pursuing through that and continuing to do the same activities.
Speaker 2 00:14:08 Cause you don't know any differently. Right? So you get back up from that shutdown to three days sleeping and you get back up and you do the exact same thing that got you there, right? So you do that cycle enough. We get to a place where we call burnout, which is a term shutdown, right? And it's more, it's more incapacitating and more, and it's lengthier. And it usually has mental health concerns attached to it. And other kinds of behaviors like self-harm and suicide and you're right. It's, it's like a next level things and that's usually longer. So by the time those of us who are in adulthood without a diagnosis, we've usually had somewhere between two and three huge burnouts in our lives. Usually they occur at those transition periods. So that's really interesting to
Speaker 1 00:14:52 Learn about the different, those three different categories, meltdown shut down and burnout. And I like how you said in a shutdown kind of like exhausting all this wounds. I actually read this article recently that I thought described just any type of disability with this idea of spoons. And you know, you have 10 spoons, okay. Once when goes to physically getting up in the morning and that could be a level of exhaustion and of itself. And then you have to, you know, deal with whatever stressors come your way. And that's another spoon. And, and so throughout the day, you have to manage your spoons to make sure that you actually make it for the day or you can.
Speaker 2 00:15:34 And so that came to us that came to the disability world through the chronic pain community spoon theory. And it really suits disability in a really smart way, especially if you are a disabled person and you're looking to manage your life. Right. And you're looking, cause it's an understanding that yes, I have this condition or this challenge. And that thing makes showering a three Spooner for me, not a one Spooner, sorry. Right. So I don't want to shower every day because some days I don't have those three spoons to toss about, you know what I mean? And, and that kind of thing. And I think that allows us with a diagnosis, the freedom and understanding that we have to make different choices about where we spend our energy, where we use our tools when we use them, all of that stuff. And if you don't have a diagnosis and nobody's taught you how to do that for yourself, all you do is you're in a race to like chase spoons that you don't even know. You're chasing.
Speaker 1 00:16:29 Sure. You quickly mentioned right there about is the three swims for a shower. And I know you also referenced sensory processing disorder. Did you self-diagnose with that? Do you have sensory?
Speaker 2 00:16:41 Um, I don't give, I don't say that I have sensory processing disorder because I consider my sensory challenges, a part of my autism. Some people have sensory processing disorder separately, alone, and no autism, and that can exist. So I just want to be clear about that. I just happened to run into it all. You have to figure it out. So I don't separate. Some people may, it may help them to manage. They may have received separate diagnoses. I know my sensory challenges are part of my, my brand of autism. So I may have some parts of it, but it doesn't sit alone. And some people, for some people, it does sit alone. And so we need to make sure that we give those people understanding as well. But for me, that's what part of the reason that a shower is, right. I imagine for you with a physical disability, showers are equally exhausting, right?
Speaker 2 00:17:25 It's no easy task to have to take on a shower. Right. And if it's a shade day or a hair walk day, it's like, I, it, I have two hours to watch a movie finished. Right. And we have different reasons for that exhaustion. Right. I use, I have different challenges in the shower that, but nonetheless here we are both disabled and we both know a day with the shower. It means a thing for us in the day. It really does. It's getting different things for sure. And so that sort of like for autism, the challenges come from that sensory place a lot that I am very sensitive to water temperature. So as a kid, when someone else is making your bath for you, right. And that kind of stuff, it's not in your control, really difficult as an adult trying to explain to people why, I don't know, like I don't understand the pleasure of a shower, I guess, the way other people do, because it doesn't feel good to stand in a hot shower for 10 minutes, like other people feel right.
Speaker 2 00:18:20 And so it's not relaxing to me. It's a job to take a shower for me, but it uses executive functioning skills that I have to be aware of because if I let my brain float and think about things that I want to think about, I've forgotten whether I shampooed or didn't shampoo or, you know, and there's a lot of stuff to remember in the shower to do. And a lot of stuff to remember, to set out for yourself before the shower. And so it uses different kind of, of brain energy for me to make sure I get through that shower. And of course, because they're so exhausting, I want to do it the right way the first time. So there's not enough to do it tomorrow. Right. And all of that. And it's just, it's really a challenge for me. And it took a long time to be an adult and accept the fact that I had to admit that taking, I hated taking showers, even though I know they're good for me. And that's because they're exhausting.
Speaker 1 00:19:06 Have you found anything that makes it worse or better, even if slightly better?
Speaker 2 00:19:13 It really, I think it's something it's about the control of the process, right? It's about figuring out a system of the process that works for you and that's trial and error and that's uncomfortable for awhile. But when you get a system down that works for you, keeping that system in place is important. For some people, it can be something like always using the same shampoo because that particular smell is relaxing. Whereas another smell of shampoo may not be right or so random. So temperature of water, temperature in the room, lights on lights off the lights off shower. Okay. I don't need to see what I'm doing. I know where my body is. I know where all the shampoo is. I don't need to see, and it gives me a sensory deprivation. So that it's lighter on my sensory overall. Right? So that's one less sensory.
Speaker 2 00:19:56 There's no lights on and things like that. So you can do things to help yourself. Some people need notes in the shower or next to the shower to remind themselves, to lay out their towel before they get in. Right. So that they don't freeze when they get out stuff like that. And you can do those things for yourself. A lot of people, music is helpful for people in the shower, right? It helps distract you a little from that stuff, but can also interrupt your executive function if you're not paying attention. So for everything for everybody is different and it's trial and error, but you'll find a system that worked through you. And when you do hang onto it and know that you're not crazy for needing it, like you need it. That's okay. Showers can be hard.
Speaker 1 00:20:34 Yeah. Speaking to event planning and work accommodations of sensory sensitivities is something that I've started to become more aware of in being when you're creating events or when asking for workplace accommodations. Can you explain the impact of why people need those accommodations?
Speaker 2 00:21:00 Sure. I think when we think about autism, a lot of times we ended up thinking about people that stay home a lot. And the reason we stay home a lot is because we can control our environment and we can control the sensory out on the world is all out of our control. So all we can do is prepare, right. We can do things to support ourselves out there, but we can't actually change out there. You know what I mean? So right now, if you're thinking about someone who's autistic and there's someone who specifically was a sensory challenges going out into the world can be, I want to call it loud. Sensory. I don't know how else to describe it. Right? The colors, the lights, the noises, the amount of people, all the distractions, right? It's very loud for our brains when you have sensory stuff.
Speaker 2 00:21:43 And on top of it, when you couple the sensory stuff with autism, the autistic brain has struggles with kind of filtering out white noise. So whereas the typical brain will sit in a room and if you're reading a book, you will turn out, you tune out, you can sit in a coffee shop, probably tune out all the people around you, right? And the smell of the coffee and all of that, and be thoroughly involved in your book for autistic people. We could read the book, but we don't filter out the door, opening and closing. We don't filter out the people talking behind us. We can't filter that stuff out. So instead we have to work really hard to not pay attention to it instead. And that's exhausting, right? That process, exhausting, trying to focus on a book, but ignore the people talking behind you in Northern new Orleans.
Speaker 2 00:22:26 If you've ever been in a movie theater, trying to watch a movie and the people behind you are talking, that is what being autistic is like. Right? All the time everybody's talking. If people are talking, I can hear their conversation. It's really distracting and frustrating. And when you have to do that for a certain length of time, imagine you get kind of cranky, right? You're you're like had enough and you won't go home. And I think that's where the social media event planning, right? It's like, do I want to shower? Get dressed, go out there into the noisy world, figure out transportation yet there, see people. I don't like do things I don't want to do get a headache from all the sensory and then come home. None of that sounds fun to me. So no, thank you. I'll stay home. Right. And so that's what we, what gets created.
Speaker 2 00:23:14 And instead, what we'd love is to have environments where people have kind of thought a little bit about us, right? And like how, if I get to the party and maybe the music's not so loud that everybody's yelling. And then all I hear are yelling conversations and I want to go home. Maybe we lower the music and octave, and maybe now we can all have a conversation, right. Or maybe if we're having a beach or pool party, we create a shady area for folks who have light sensitivity, right. We're not talking about inhuman requests or requests that are so difficult, that it should be so hard. It's just about being a little less selfish and a little bit more aware that other people have other needs. Right. That's really all that we're asking. And then what we find out as we kind of include all of these little accommodations to events and things, is that when we tend to adapt for folks with sensory issues and autism, it tends to be good for everybody.
Speaker 2 00:24:09 Like the first people to complain about ocean OpenOffice planning. We're autistics. Give me my cubicle back, shut them up. I can't hear anything. Right. I can't focus. I can't do my job. I can't do anything. Right. And now what does, everybody's open off bad, bad to just don't do it. Don't do office planning like that anymore. Everywhere. Now we want to use home lighting in the office now. And we want things to be comfortable now. And people liked it. Right. We know that now. Right. And so it's not such an odd thing to apps, but when you're the first kind of squeaky wheel asking for those things, it seems odd. And that's kind of where we're at. So in terms of work like workplace accommodations, it's kind of similar if you're having a, um, Sam meeting in a conference room, right? How about just shutting the blinds for the autistic people in the room, right?
Speaker 2 00:24:55 You have the lights on, do you need the lights on? And the blinds, like, does it have to be that bright for you? Do we really need to look at each other that closely when most of those meetings, right. We all know email. Right? And so there's a lot of things that we learned, right. Then I think the disability community, the greater disability community has been talking about for a long time through this pandemic. Suddenly we w what, Oh, you'll give us remote work now. Isn't that interesting? Right? Oh, you'll spare me the spoons of having to travel. You get dressed now. I see, because now you've seen how good it is for you.
Speaker 1 00:25:31 Oh my gosh. This is so good. I just, I love hearing all this, so many great things that are just heading home. Um, I, yeah. Why do you need the BLI? It's just the way you said it was really funny to me.
Speaker 2 00:25:44 It's true. Because I think when we say it in that really blunt really, almost sarcastic way, everyone kind of goes you're right. And they feel kind of silly, but those are legit things that people have said and done to me in real life. Like I'm not making up that these things happen where I'll ask for the blinds closed and everyone looks at me like I have three eyes. I was like, I'm sorry. Okay. Nevermind. I'll put my sunglasses on in the meeting. Is that less weird? I don't know. Right. It's really just, it's such a strange, strange things that have kept autistics in this unemployed position. Right? It's all, it's the societal constraints. This idea that if that autistic a, that we somehow can't do customer service, which is a lie. We probably just can't do extended customer service or very long, but we certainly know how to be nice people and you know, like the end.
Speaker 2 00:26:33 So we fighting these stigmas and stereotypes about ourselves in the workplace. And then when we say what it is like when I say to you just close the blinds and, and I don't say it's accommodation. I just say, close the blinds suddenly it's not so weird. Right. It's suddenly not such an odd thing to be asking for. And why are you stigmatizing me in the workplace for that? Right. But yet that's exactly what it is. And my other thing that I personally have struggled with in the workplace is my direct communication. Autistic people don't like fluff. We don't like gray areas. We don't either. We don't nice things up for you. If you ask us, if you, we like your outfit, we're going to tell you one way or the other, the truth. And then probably in one or two words, right. That's, that's kind of how we function.
Speaker 2 00:27:18 We don't understand what the passive aggressive thing is. We don't understand the gray area. And the fluffy words you say to people before you say the not nice thing, we don't get any of that. And we don't understand the need for it. More than that, we understand that the greater world does it, but my brain doesn't understand the need for it. My brain doesn't, can't make my brain understand why and what the use of it is. And so when I'm especially passionate about things, I really lose my edit button. Then I think at work that's been a struggle because I just, I don't say, Oh, nice, nice niceness to boss' boss' boss. Nice, nice, nice. Oh, and by the way, right. I just go in the office and go, Hey, listen, there is a societal rule that, that direct communication, especially from a woman is rude.
Speaker 2 00:28:07 Right. We'd somehow prefer me to say so I would really like it if, you know, if you don't mind, just because I know it will interrupt your day a little bit, but right. Somehow that's a better way for me to go about asking for my needs. Well, I don't think so. And I'm sorry. No. And I was raised in New York city, so really no. Right. And I, I can't. And so that's been a struggle in the workplace, especially as someone whose brain sees the patterns. Right. I see patterns of mistakes. I see patterns of kind of unproductivity and things like that in the workplace. Can't help it can't help it. Right. And it's really hard to do my job in a way that I know is not as functional as a way that I could make it or the people around me. And for some reason, bosses actually hate that they like don't want you to make them more productive. I don't know. It's really, it's such a backwards dance. So that's been a struggle for me. And that is a social struggle that makes me unemployable, not because of my skillset, but because there's some really random social rule that direct communication is rude.
Speaker 1 00:29:11 So much of this is, is very much how, how I operate. I, I never really understood the gray. I see very much in black and white and I always have trouble. I can never go into a coffee shop and study. I don't know how people did that. I don't know either. I think it's just distracting. So yeah, it's, it's interesting to think whether or not like, how, how do you come across knowing that you're autistic or just having all these extraneous distractions? It's not really good for anyone really.
Speaker 2 00:29:43 Right. That's what we're for finding, right? Because when we adapt and we do that inclusive stuff, autistic show up. And when we show up and we're not stressed, we can participate. And when we participate, all of the stigma goes away because now you can see the truth. Right. And the reason that stigma has lived for so long is because we've been really kept out of public view for our own wellbeing. Right? If you didn't, especially if you go out through your life undiagnosed and you don't know why you're, you just know it's safer inside. Right? And so even if you were out in the world, you wouldn't even be telling people you're sick because you don't know yet. So it was very interesting. The whole thing is interesting, but what it comes down to, to me is I was given a loud voice. I was given a direct, you know, this direct communication.
Speaker 2 00:30:30 I was given a tough skin or like thick skin. And therefore I learned my loud, annoying voice to my community because somebody has to say it out loud. Sometimes I see stuff that is so stupid. But if I don't say it out loud, I can't keep it in. It's so stupid sometimes. Like, that's, you know what I mean? And it amazes me like the blind thing, like the licensing, like the sunglasses thing. I know people who have been fired from jobs for this stuff. Like, are you like really shitting me? You can't. And this person is like your best worker and never missed a day, never come in late. Never any of those things. Right. Okay. And so how do you not say that out loud? How do you not call it out when you see it? I don't have the ability to not, and so that's kind of what I do, I guess, for a living
Speaker 1 00:31:16 Yours, call people out. Yeah. Call the inefficiencies, inefficiencies and the dumb processes and the dumb rules that just add more work to everyone's day. I definitely don't vibe with that at all. Like if I see something that's so inefficient, I'll be the first one to call it out. Right.
Speaker 2 00:31:35 I mean, who wants to work efficiently? Nobody, no one can come in and you're the new person and you do better. Everyone hates you. Yes. And so you can't win. There's no winning, except if you do what I did, which I got frustrated enough to go into self-employment because couldn't take it anymore. Yeah.
Speaker 1 00:31:55 And so that shift from the corporate world, bouncing around from 13 jobs, kind of being done with it. Obviously there was a lot of triggers that made you be like, I'm done with this. Um, but what was kind of that breaking point?
Speaker 2 00:32:09 I think for me, I mean, for me, it began with my diagnosis. So my diagnosis was like this, it fell out of the sky. Really. That's how it felt. It fell out of the sky into my lap. And I had to suddenly reevaluate everything. Right? So when you get an autism diagnosis in adulthood, we all do the same thing in the first year. I don't care who you are, where you grew up, what planet you're from, what country you're, from what language you speak that first year after diagnosis is spent half angry, half will not have, I guess, a third angry, a third Zad and a third just baffled, just baffled that this information was kept for you. How could you not know this? How did the people around you not know this? Like what? And like how many choices you've made in your life without this information.
Speaker 2 00:32:56 I mean, it's, it's mind blowing and you can't help, but to go through however many years of your life, you've lived on this planet without it and think, okay, well, when that happens to me too, was that autism or was that life when that happens to me at four, was that autism or was that life. And you know, you, you start to see autism everywhere and you start to find it in your life everywhere. And then do you get angry for all the people that didn't help you, but promise they were helping. And you get sad about your little you and all the things. Little you could have done if right, you, you can't help it. So it's a very emotionally turbulent first year. Most of us is info seeker spend also that first year with our face in every book about autism ever made, just learning everything we can learn about it because that's another part of the autistic brain is that knowledge seeking, seeking information.
Speaker 2 00:33:44 And so once we all become experts in ourselves after that first year, we get into a now what position I now have this diagnosis. I now have this information. I've processed through all this stuff. Now, what am I supposed to do? And as an adult, you're left there with your diagnosis in your hands. And that's it because we don't have adult supports for also autism. We don't have adult services for autism. We don't, our diagnosis. Isn't covered by insurance. None of our services are covered by insurance. And so to get a formal diagnosis as an adult, you're looking at a couple of grand out of pocket to get a diagnosis. And for that couple of grants, you're getting nothing.
Speaker 2 00:34:26 This is your autistic. Yay. Right? Check the box. Yay for you. That's about it. You will still likely get denied for social security disability. You will likely not find any services. I would say 75% of our country would not find services or supports. And so many of us still choose to self-diagnosed because why we're 85% of employment. Most of us are unemployed. Nobody has a couple of thousand dollars to shell out for a useless piece of paper. Right? Right. So that's where we're sitting at in the reality of adult autism, right? That's the reality right now of adult autism. So it's been up to us, autistic adults to create our own supports, to create our own community, to create the research, to become the researchers, to find the funding, to do all of this stuff, to let people know that when you turn 18, your autism doesn't disappear.
Speaker 2 00:35:20 It doesn't go away. You, you grow into it. You become an adult with autism. It's still there. It's still your brain and their kids that they're so, so worried about that we have all these supports for are going to be over supported and then have no supports at 19. And that's, we've created now in our community, is this mess. We tried to correct from having no supports for them, for having so many supports for kids that they're not learning how to have independent skills or how to have, how to understand their identity. Their identities are handed to them practically. Now. Yeah.
Speaker 1 00:35:53 Three labels and three peer groups. They are environment all of it. And so parents even. Yeah.
Speaker 2 00:36:01 And so we have to, it's still not. Right? Right. We kind of, we went one, we had nothing. So we swung the other way. And now we tried to have so much, we have a lot of shit, right? There's not a lot of great stuff out there, but there's tons to sift through for your children and zero for adults. So that's what I ended up doing with my career, was creating an option for people creating a choice. I went through a journey myself. I had to figure out what to do with myself, how to do it. And I kind of found my way through personal development, which used to be called self-help. I found my way through books. Like you are a bad-ass big magic, right? Four agreements. I've found my way through them as an autistic person they're written for neuro-typical. So they don't really all make sense for me.
Speaker 2 00:36:43 Um, not all of the information is useful for me, but what was useful for me was finding the patterns in their books, that all of these people were writing all of these really differently styled books and using different words and from different parts of the world. But there were about seven or eight hallmark things that all of these people talked about using different words, things like boundaries, things like having values, knowing your own value, having priorities, being in alignment, right? There are a lots of things that were repeated over and over. And I was an autistic person. I can't help, but see the patterns. So I collected the patterns and now I've reduced the patterns to a course for autistic adults. That isn't just the meat and potatoes of those books. But it's just the meat of those books because that's all autistics want, right? We just, we don't need your explanations all behind it or the stories it's just giving me the tool,
Speaker 1 00:37:39 Just give me the tools. Right? They don't need the fluff.
Speaker 2 00:37:43 And so that's what I've built. It's not to say that it's the best thing ever to be invented, but it's a thing where there's nothing, it's the idea to give adult autistics the idea that there should be something out there you should be looking for more. You need to be looking beyond survival. You deserve the right to thrive in your life, to love your life, to live your life, right? The way you see fit, not the way the world has decided you should be. And that takes some deprogramming, take some knocking down some life choices and rebuilding. It's a lot of work, but right now, autistic adults aren't even offered that choice. Most of them don't even believe that that's possible
Speaker 1 00:38:26 In the virtual course. It's called self-defined living a path to a quality autistic life. Yes. That's. I mean, I would love to learn about it whether,
Speaker 2 00:38:36 And I mean, I always say like, I wrote it for autistics, but everyone can gain. If you're like a no-nonsense person and you don't mind a room, I don't know how to approach it, to learn it. Right. Then you'll get right. You don't work for you. You'll take away tools that you can use. It's it's fine. But you know, so much of all the other stuff that's out is full of so much fluff that autistics don't have the patience to kind of get through it. It's like, where's the stuff I'll just skip through. Nope. Still more garbage, skip, skip, skip, skip, skip. You know, and it's like, that's how I, that's how I
Speaker 1 00:39:06 Read books. I'm like, I don't care about these stories.
Speaker 2 00:39:09 I don't want, I want if I'm reading it for the tool, right. This is what I want. Um, so that's what I've created for people. You are more than welcome to come and take the course. I would love for everyone to take it because I think if every human being figured out that they need boundaries and every human being knew their own values and every human being put themselves first and stopped worrying about everybody else's opinion so much, we would all be a lot better off. Right. We'd all be living a healthier, better life. And that would make us better neighbors, better friends. Right. All of it. Yeah.
Speaker 1 00:39:41 So kind of when you were growing up and also in some of your blog posts, you were talking about needing to have, or wishing to have a mentor or someone that looks like you, a role model or something. And one of the easiest ways now that people can find those people that look like them are in the media. So on TV, on Instagram, on, you know, whatever it is. And a few things that have come across my radar is the spectrum Netflix show, which is a dating show for people on the autism spectrum. What is it called? Like normal or it's a Hulu TV show, I think. And there's of course a, a white male on it. And who's haunted.
Speaker 2 00:40:26 So how do you talk word nerdy? Yeah. I mean, it's really sad. So I mean, I know the question is always do we like it? Are we happy with our no, we're not because I'm very fond of them as hardcore as you guys do, the writing is terrible. It's not realistic. Nobody's parents have ever behaved that way in life. I mean, it's just, I mean, it's like absurd, right? It's in a sense we're moving forward because we're there. Or it's being said out loud and it's on mainstream TV. So I guess yay. Tiny a right. Like we've moved forward. At least we're there, but we haven't gotten far from rain man and rain man isn't is actually, and this is the thing I think that makes most autistics, the mad, mad about rain man. The most is that rain man was written after a real person.
Speaker 2 00:41:20 It was a real human and he was not autistic. So he was a savant and Vaughn's do exist, but not all autistics are savant. Most of us are just ordinary people. Right. And so everything about rain, man, everyone goes, Oh like rain man. You're autistic like rain man. No, cause rain man, wasn't even sick. So I'm not autistic like rain man at all. But that, besides that piece, I mean, when we think about the portrayals and we've had some portrayals, some women attempt to portray women on the spectrum, right. We've had a few movies come out that have attempted to, but of course what we're missing is the same thing that everybody in the rest of the disability community is missing. Why isn't an autistic person playing an autistic person. Why isn't someone in a wheelchair playing? I just saw your whole life. You're obviously not really in that wheelchair.
Speaker 2 00:42:15 Right. And like, it's, it's that feeling? It's that? Wait, wait, let's sit back and watch TV. And now he's going to have some weird wacky, special interests. Let's wait and everyone. Oh, there it is. Penguins. There it is. Right. And that's Oh yes. It's exactly what, and we are, some of us are picked, cats are a special interest of mine, but I don't walk around talking about cats with everybody. Right. I just have a lot of cat stuff and I have a lot of cats and I hold a lot about them, but I don't talk to every human being I meet about cats.
Speaker 1 00:42:46 Right, right. That TV show is <inaudible> I'm like, okay,
Speaker 2 00:42:53 Like every it's like that stereotype, right. It's just, that's what you guys are getting in the media right now, which is better than the nothing we were getting before. And nothing meant that a lot of characters were written autistic, but no one would ever say they were autistic. Right? No, they were just quirky. No, they were just odd. Eccentric. Right? Whereas words we use, but like even Sheldon in big bang who most of us now know it was written after one of the writers, children who is on the spectrum. And there is a parent that is a writer that writes for the show that has the experience. But even he and they, and everyone on the show will never say that Sheldon was autistic. Right. So even when we do get somewhat accurate and at least in a funny representation way where like a sense of humor, we're not even credited with it. I want to say like we're doing even no one really even allows it. So it was only recently that we've had characters on TV that are openly autistic. Right. Even forget that they're all wrong. There's at least they say it out loud and everyone talks about it. Sure. Um, so we're getting somewhere, but of course we need to do better.
Speaker 1 00:44:01 Yeah. I agree. I mean, in, in all the disability community and a lot of other representation as well with all the minority, just make shows that look and act like real people and are real people. And a lot of these shows, I think kind of debuted this silent disco, silent rave kind of thing. And it seemed to be very focused on people with autism. Need that. And can you, can you speak to that? Sure. So when people with autism
Speaker 2 00:44:32 Do need that, but we're human beings and we come in all varieties. So some people like loud music, right? I know one of our more famous advocates worked in rock music for most of his life. He did soundboards and rock music because our hearing is so particular and a lot of us have perfect pitch, things like that, that he was so good at the audio stuff. And he spent his life in concerts and huge arenas, you know, doing sound for people. And so the idea that we don't like loudness, yes. I mean, we don't like loudness of all kinds, loudness of color, loudness of everything. Right. Loudness of people. None of it really works. Cause it always feels like it's coming at ya like an attack. Right. And so, but there are some people for whom particularly sound as an issue. And like for me, I think those silent discos are so funny.
Speaker 2 00:45:20 I would rather, they took the lights off. Like they always show the silent disco and it's always got one of the disco balls. Right. And there's all those flashing lights, but it's silent. So good for autistic people. No, it's not. Some of us would have seizures in that room. Right. So like know that even that isn't a perfect solution. It's a solution for some, it's a step forward it's better than, but it misses the idea that, of the concept of sensory sensitive. It's not just noise. Right? It happens for us. Some of us have struggles with food because of sensory issues because of the smell of food, the feel of food in your mouth or our taste buds are different or more sensitive, more sensitive to taste. Right. We can tell the difference between brands, which is why we get brand particular and stuff like that. So it comes in all different formats, the sensory stuff. Um, and that's what, you know, so it represents one piece of a struggle for people. Yes. In that way.
Speaker 1 00:46:16 Wow. I didn't even know it got as specific to different brands, being able to having hunger sensitive to that. It's really interesting.
Speaker 2 00:46:24 It's absurd. It's really crazy. And I've been challenged. I mean, I've done it in like bars as a challenge. Right. I can beat you. I can't keep you able to know. And it's sad, but that's how sensitive. Right. But then on the other side of that, and this is the other side of sensory sensitivity that people miss is that when something tastes good to me, it tastes so much better to me than it will ever taste to anybody else. When I see something beautiful, that much more beautiful to me when I hear something, I love that much more beautiful. So there's another side to it that we don't talk about either. It's not all about challenges that come along with it. I have lots of benefits that come along with the, to speak to those. Yeah. I mean, that's what some of them, right. When I see beautiful things to hit, right? Those are the, those are my opportunities to say, this is my, the strength of my sensory sensitivity right now, this, you know, I can taste the difference between these two things. And I can, I don't know, like go out into the woods and have all by myself and just have an incredible experience because I take the time to take in all the details of all the things around me and I can see them all. Most of the time, I'm busy trying to shut them out. You know?
Speaker 1 00:47:36 Uh, I really like how you said that because a lot of what we view in think of autism is that there are challenges and that they're such burdens. And not to say that that doesn't exist, but we forget the other side of it. That there's a lot of beauty to being so hyper specific on things that just, you know, I guess quote, regular people don't experience.
Speaker 2 00:48:00 I mean, we, we are as autistics, we get criticized a lot and corrected a lot for our instinctual choices. Like we get our joy corrected a lot. That's what I like to point out to people a lot we're told, right? For example, stemming right. Swimming can be used either to regulate yourself or it can be used as sometimes we have too much emotion inside and it can be another way to get that emotion out. So when we get really happy, we say like, we get flappy happy because that's another level of happy where you're happy is so big. It has to come out physically somewhere. Right? It's like, and that's what you call it. Yeah. Some people do our movement. We kind of, I mean, colloquially, they're sort of, as the community of flappy means you just so happy that you have to like STEM it out somewhere.
Speaker 2 00:48:43 So for some people that's hopping and skipping for some people as clapping for some people it's flapping, right? But it's like this, the emotions are so big that they have to come out physically, which we see the negative emotions come out physically too. Right? The anger is so big. It turns into punching or slamming doors or whatever. But the other side of it is that the joy is giant. The joy is huge. But then people who are not autistic come around and tell us that our joy is wrong. That's not fun. They'll say, why is reading about drains, fun to you? That's not fun. Or you're flapping your arms. Don't do that. I've been so happy though. Don't be that happy. Oh, so that's interesting thing to hear as a child. Anything. Yeah. Right. What you're having fun doing. Isn't fun. Your reality has now been invalidated, not fun.
Speaker 2 00:49:37 What you thought was fun. Yeah. All of those things. And then what you learn is that the things that you're doing instinctually that do bring you those feelings shouldn't be done. They're not acceptable. And so you hide them. And so we end up with angry, lonely, and joyful autistic adults who then become suicidal. And we have something like we've had two different reports come out. It was earlier. We heard that our average lifespan was 36 and that was the year I got diagnosed. And that was the first report coming out. The main cause of death for adult autistics as suicide. The rest of it is usually undiagnosed or untreated medical issues because we struggled to make those phone calls to the doctor's office and get ourselves in there. And we struggle with being validated in the doctor's office. And so we often don't repeat perform. We don't usually come back. And so we don't often have our health stuff dealt with in time to take care of us. And so, but a good chunk of it is suicide. And why would you have so many adults committing suicide unless they were unhappy? Well, of course they're unhappy. You told them they're happy is wrong.
Speaker 1 00:50:44 <inaudible> I told them you're happy. It was wrong. Wow. I wonder if my mom's a teacher and I won't be definitely sharing this episode with her because it's, it's something that's so critical as a child when we are as a society, but also in the classroom and at home we're telling kids, no, don't do that because that's too extra or that's not socially acceptable. It really makes an impact. Not just for people who aren't distinct, but if you're experiencing, being told no all the time at a very young age, you then really kind of just crumble under the stress of that being told, no that that's not acceptable. You have to perform X, Y and Z way.
Speaker 2 00:51:38 Yup. And then what happens for us is that we spend the majority of our time trying our best to perform X, Y, and we don't learn about ourselves. We don't know what we really like or don't like, we have no idea what we're really good at what we're not good at. We have no identity because it's been depleted. And then for me, my identity came down to being a star like sardonic, ironic, lonely, angry, nasty person, because I had figured out by default that the only way to protect myself was to build boundaries so big and thick that nobody could get in. And it also kept me from knowing people, going out of the house, doing things that I would have otherwise enjoyed. Right. But it was the safer choice for me. And that's scary. That's scary that people are out there living like that. It was, it was on pleasant to say the least to live that way. And so I don't want it to have to be that way for anybody else. Right. I don't want people to know that they don't have to accept that as a choice. Okay.
Speaker 1 00:52:36 And there's also all these other labels that are being thrown out as well as a child and an adult, right. Things like high functioning. Non-verbal, non-speaking full, floppy, happy, flailing, you know, all these other things. What, what do you feel about those?
Speaker 2 00:52:53 Meaning like about them being criticized or
Speaker 1 00:52:57 Are those the right terms that should, that should people use to describe autism?
Speaker 2 00:53:02 I'd like to say this, actually, I am excited to say that we are finally starting to take back our words so much, like the LGBTQ community said you can't use the word. Queer is a bad word. We're taking it back. Oh, we've taken backwards. Right. So we're taking back meltdown. I don't care if people want to poopoo it. I know what it feels like to have one. I know how ashamed I feel afterwards. I know how physically exhausting it. And I know exactly why they occur. I don't need you to tell me that, you know, I shouldn't use that word or I was just upset. Right? In quote marks, I'm upset. No, I had a meltdown. I'm an adult and this is part of autism. And I had a meltdown. And here's why here are the triggers. Right. And because I'm an adult and I can articulate those for you.
Speaker 2 00:53:44 Whereas a child could not articulate those things for you. Right. We've taken those back. We've taken back autistic. We've taken back autism. Right? For the last decade, people have been telling autistic people that we shouldn't say autistic, that we should say person with autism, that we should use person first language. And also six they're like Hells. No, I don't carry my autism in a bag with me every day to not put it on like a hat and take it off at night. I have my autism with me all the time. I dream an autism F-you I am autistic. Autism is so much a part of my identity that you have no right to tell me how to talk about it. Right. Literally the conversation that I am having with you right now is happening through my autism. It is happening through that filter. Right? And like, that's it, that's the only way I know how to have conversations because that's my brain.
Speaker 2 00:54:41 And so the idea that we should, that, that somehow gives us our personhood back. If we say we are a person with autism, no, it gives me my personhood back when you respect the way that I want to talk about myself and the way that I feel about myself, that gives me my personhood back. So freely everybody out there. When you talk about autism, you can say that someone is autistic. That is how we refer to ourselves. And if you're not comfortable with that, because you grew up the other way, feel free to ask that person how they like to be talked to much like you do with pronouns now. Right? We are happy to answer questions about ourselves, happy to talk to you about our particular brands of autism and what's difficult for us. But when you assume, and then act, you're usually not making a good choice
Speaker 1 00:55:29 For a long time. And what I have been trained is that people first language, so person who uses a wheelchair person who is blind or has low vision person, who's hard of hearing or deaf. And so I would have said, Becca, you are a person with autism and you would have been like,
Speaker 3 00:55:48 Oh no. Right,
Speaker 2 00:55:50 Exactly. Right. Because there are my disability defines certain parts of the way that I'll have to live my life. And I can't ignore it. Can't turn it off. I can't put it away. I can't make decisions without it. I can't go to a party without it. I can't, you know what I mean? It's not like that. And so it has to be a part of my identity because if I don't accept it as a part of my identity, I'm back where it was pre diagnosis and that's useless.
Speaker 1 00:56:17 Yeah. You didn't want to be in that position. This has been so insightful. I've really loved learning about this. One thing, if I could ask you on a personal note. So I'm on a task force in my city of Atlanta. I live in Atlanta. So city of Atlanta, government and accessibility and inclusion task force to think about how the city of Atlanta is looking at their real estate, looking at their committee meetings, their council chamber, and then also their public outreach. So when they're posting on social media about a meeting or during things that are happening, is there anything in particular from a real estate, from an, a public outreach or technology aspect that would be helpful for the autism community?
Speaker 2 00:57:04 I think so. I think there are some things that we can add. And I don't know that they're beneficial just to the autism community. I feel like they're going to have outside benefits too, but there, you know, besides the environmental stuff, some of the things that you can do when you're trying to be more inclusive, and this is going to sound like a crazy thing, but your signage, right. Autistic people really get lost a lot. Some of it is because we're thinking about so many things at the same time that we get lost in a thought and then forget to look where we're going, where those people. And so we need directions a lot. We need like signs along the way and things. So a lot of times you'll find that an event there's not a lot of signage. They won't tell you where the information is or where disability services is or where you can get help or, you know, whatever.
Speaker 2 00:57:51 Like they just don't, you know, though, we're not physically disabled. A lot of us benefit from the benefits that the physically disabled have gotten. For example, sometimes you guys get your extra elevator, you get an, a separate entrance and stuff like that. You get to sit closer to the front. Right? All those things are helpful for autistics, not waiting in line, right. That kind of stuff. And so we're benefiting from a lot of the stuff that other disabilities have put in place in an environment. But I think that there is more to be done. Um, we know there's more to be done all around, but I think, you know, so some of that stuff, we, we really autistics would appreciate a quiet place besides the bathroom to go sit. So if you're holding an event or a conference or a concert or something like that, and you can put aside one small room, put a quiet room, sign on it.
Speaker 2 00:58:40 And that only people going in there, you know, no noise, you can listen to your headphones. You can use your fidgets, no talking, no, you know, lights down kind of environment. Because if autistic start to struggle, that is the easiest and best way for us to calm down is do you find ourselves someplace quiet and dark to slow down all the sensory to commerce thoughts? Right? And so if those environments are made available to us and visibly available to us, right, then we don't have to go hunting it down in the middle of a panic attack. That would be helpful. Most of us do as adults use the bathroom, we'll go and sit in a stall because no one's allowed to bother you in the bathroom. We've all learned that through our lives that no one bother you in there. So we'll do it at home.
Speaker 2 00:59:23 We do it at places. Right. But it'd sure be nice to have a seat to sit in instead of a toilet. Yeah. That stuff would be great. Um, the lighting stuff, I talked about, sound stuff. Um, I hear a lot of like reverb stuff. Yeah. So when you're doing sound checks, make sure that your sound technician really checks for reverb and volume and stuff, because that stuff is really difficult for us to kind of process through, to hear what people are saying through that. But I sat on a, uh, I was actually the chair of a committee of an inclusion committee for an event that just passed them. We just came up with a whole list of them. So I'm trying to remember all of them. We also talked about food. Food is often a concern for autistic people. We are picky eaters. We have a lot of dietary sensitivities and things like that.
Speaker 2 01:00:10 We also struggle with our sensory and that includes smell of food. So a lot of times you'll go to a conference and they'll put the buffet like right out in the hallway and it's right outside all the rooms where you have to sit and pay attention. And all you can smell is the five different things that are going to be available for lunch smushed together. And for autistics that can give us pain, right. That will eventually cause me a migraine and stuff like that. And so if we can think about keeping food away from areas where people are supposed to be sitting and learning, right. Also when there's food around, people make extraneous noise out there when you're putting food around and people are taking it, right. So that's another level of noise for us that we'd rather not have to deal with right outside the auditorium that we've paid to be in.
Speaker 2 01:00:53 So that kind of stuff is helpful. We let's see and clearly marked food. Of course, if you've done anything about dietary sensitivities to clearly Mark that stuff for people and to make sure you don't let other people who think they prefer it to take that food from the people who need it, right. Be really clear that that those people have ordered that special diets. So please don't take it. Cause I've had that happen for people at conferences, temperature control. That's another big one that happens to us. Often. I, myself am someone who struggles with controlling my body temperature and, or reading my own body temperature. So a lot of us fluctuate. So having the control of the temperature in that room in particular, a lot of times we'll rent conference halls and they don't leave you in charge of the temperature or they don't tell you how to do that.
Speaker 2 01:01:40 And there's no some person at the conference whose job it is that you could go to them and say, can you lower the temperature? Right? And so without having someone around to ask where we sit and suffer, right? So where are the people that come with like three coats and take them all off and put them all back on and take them off and put them all back on. And so if you can have that access, and the last thing that I like to advise is having an information person, a designated information person at your event where it's like an info t-shirt that says, I am info, ask me. Right. And you can point it out. When you do your kind of housekeeping at the beginning of the conference, this person XYZ over here wearing this shirt is your info person. They're having an emergency.
Speaker 2 01:02:22 If you need to find an exit, if you have a question, if you need an accommodation, this is your person go to this person, right? Because otherwise we're in that socially awkward position, which is always more socially awkward as an autistic person to have to find the person whose job it is to do the thing that you need in there. By the time you get the courage to do that and get through all of it, you've missed half the conference. So those are little things that you can be doing. If you are particularly expecting a neurodivergent audience, like you're really expecting folks with autism or any other of the nerve neuro divergences, you want to make sure that you give people other things that they can wear and do for themselves. So a lot of autistics struggle with selective mutism in public sentence situation, right?
Speaker 2 01:03:07 So they may not want to be having conversation and they may not be able to have conversations. So a lot of us get anxiety to the point where we literally lose the ability to speak. We cannot make our brains, make our mouths move and say the things that we want to say, it's a connection problem between our brain and our mouth that gets interrupted from the anxiety. Right? And so we call that selective mutism, meaning that we're not mute all the time, just in certain situations. And so when you run into them, it's helpful to have like a little colored badge. We do that. Usually it's a literally traffic colors, right? Green. Yes. I'm ready to talk yellow. I may not feel like talking red, please don't address me. I don't feel like talking today. And so that without having to communicate with someone, you can see off the bat, whether they're feeling like being introduced to you or networking today or not networking today.
Speaker 1 01:03:55 Right. I love that. That is so cool.
Speaker 2 01:03:58 Great. Are you also, of course, because we, in our community and the autism community, we're finding that we have a larger portion than the rest of the population of folks that struggle with gender, um, and struggle with their sexuality as well. So we have a lot of folks who are non binary folks who are of other genders, all different genders. We have asexual folks we have, right. We, we, we seem to be filled with a larger majority of that. And I think that's because our thinking is so not based in societal rules, we don't believe in them. We don't really generally follow them in our brains. So our brains don't feel the need to fit ourselves into those categories either, um, until the world asks us to. Right. And so we do have a large collection. And so we do start now and, and neuro-diverse conferences, it's becoming habit.
Speaker 2 01:04:43 I hope to ask pronouns as well. So to have a little thing on your tab where you can put your pronouns, right? So those are some other niceties I recommend. If there are two places you can go and look for stuff that will help you to put on an event. One of which I'm proud to say, I was just a part of, which is the, I just did the ASD nest, which is a part of the NYU school of education. Um, and that we were able to put together a nice list of event planning details for the neurodivergent specifically that you can add into your event planning kind of checklist, right? You can find that, um, through ASD nest on the NYU website, and then the other place that we recommend also as a, uh, I think as a community, we recommend the autistic self-advocacy network. So that's a S a N they have all kinds of guys that you can follow including language. And they have the little traffic light thing on there, and they have a, that's another place for resources for that kind of thing.
Speaker 1 01:05:45 Oh, wow. That's so beautiful. And hearing what you're saying, a lot of events that I've been a part of in the planning, we've done a number of them, which I am very, it's cool to see what you're saying and what we've actually put into reality. One small question was about the quiet space beside the bathroom. What we've done at our event was the mother's room is kind of like this closed. It's like this temporary kind of box, and it's fairly large, but it's like a cubicle type thing, and moms can go in there and nurse, but we have commonly bundled that as the quiet space, the nursing room. Is that okay? Or would you want to,
Speaker 2 01:06:27 I mean, I think, you know, ultimately everyone would love to have, I think the moms too would love to have their own separate space, but it's a conference you're not there forever. Right? You're not like, and that's the other part. I always remind autistics, like no one is going to get it a hundred percent perfect for your brand of autism, right. They're going to do their best, but you have to do your side do, right? Like if you know your struggle with food, and you're really uncomfortable trusting that other people are going to have something that you can eat there, bring your lunch, do yourself the favor, save yourself the spoons, bring your lunch. Instead of having a fight with the people they're not eating lunch and then being mad about the organization or whatever it is, right. Save yourself the trouble. No that no one's ever going to get it right.
Speaker 2 01:07:07 And bring the things with you that you need to get through whether or not they supply them, right? Like autistics some go to a conference without your sunglasses. You know, they're going to put on those overhead lights, right? At some point don't not bring a fidget because you know, you're going to want to get up or, you know, you're going to want to move around and to bring a fidget, like do the things, you know, you need for yourself, take snacks with you if you need. Right. Cause they only let you eat that one time. So it brings snacks with you for in between. There are certain things that when you're planning an event for a large group of people, you can only do so much. Your budget is only so big. The building is only this much capacity. Right? So understand that even when people are doing their darndest to make an event inclusive, that sometimes it's impossible to hit everything and try not to be mad.
Speaker 2 01:07:54 Right. Try to know that it's just, you know, you can make a suggestion for next year. If that makes you feel empowered, that's a helpful way to feel empowered about it, but give them a break. They just busted their butts, John, to put together an event for you. And, you know, just understand that they did their best. Um, that is of course, unless you end up at an autism conference in particular and they have done none of these families by then all means, shout it out. Because as an autism, nonprofit doing a conference, they should know better and they should do better. Right. But if you're going to a more mainstream conference, give them a break, right. If I'm a little bit of a break on the understanding, help them out with some information, passing along some resources, being nice about it. Right. And if they don't do it the next year, then you can be mad. Right. But try not to, to take that with you, take the tools you need with you do your part to right. Meet them halfway. And that's not to say that those autism non-profits, that do that are off the hook because there are ones out there and I've been to them and that's something. And I still see them do it. So we know that it's happening. Right. So you can tell the difference between a conference where they've tried and a conference where they haven't. And so it'd be nice.
Speaker 1 01:09:00 And with the fidgets, you know, I was always told, don't touch things when you're talking to someone, you know, put your hands in your lap and don't do it. And, and, and I know some friends who are autistic and they can't process information without like fidgeting with something. So I think that's,
Speaker 2 01:09:18 Well, I mean, I'm always, and it's the way it's, because when I think about stuff and if I'm thinking about something that's really either difficult or challenging or something I'm excited about or passionate about, right. It's that energy piece that wants to come out that I, and I can't, I can't. Right. But if I use a fidget, it gets that energy out. So I can keep thinking, instead of being distracted by the energy that's making my body won't move. Right. And so a fidget, especially now we have so many silent fidgets, right. We used to have everything when we first started with fidgets. I mean, I forget it. And that fidget spinner that came out into the planet, remember that, right. That everybody loved what an irritating object. Right. Okay. And we made it a toy. So it stopped doing its job. And it became a toy which made it more irritating.
Speaker 2 01:10:02 Right. But it's not truly a silent fidget and it shouldn't be used in a classroom because no, we don't give children weapons. Right. Like it's smart. Right. It's like just, you know, common sense choices, right? You don't go to a conference where everyone's going to be quiet and bring your squeaky fidget with you. Right. That's not what you want to do. Take a silent one that nobody will even know. Right. One of the best ones that I use the most is actually just a stress ball. Those silent stress balls. Right. Makes no noise. Nobody knows. I have it in my hand, nothing. Right. It's discreet. It's all of those things. And yet I'm taking care of myself without disturbing anybody else. And so it's those kinds of things that you need to be thinking about at home use, whatever fidget you want, make your fidgets of yourself, you know, like make them up, who cares?
Speaker 2 01:10:46 Lots of people. Do they have different objects and textures that they like, that's fine, but we're still humans. And even though we have needs, we have to remember the needs of those around us. Like we still have to be courteous. So, you know, leave the noisy fidgets home for the right occasions, but take the ones you need. Right. I always wear a spinner ring. And I always take my squeezy boat, which is essentially a stress ball. Right. And those are my two fidgets. Some people wear two jewelry cause they need to do the, they need neural STEM and that's fine too. Also silent. You're not bothering anybody. And I think so I feel like that's two-sided yes. People have a right to be annoyed at your fidget if it's disturbing their experience. But at the same time, if they are not, they shouldn't be looking at you.
Speaker 2 01:11:26 Like you have seven heads, right. If you're not experiencing that. So I sit on the fence like in that way about it. I don't, I know a lot of people, a lot of autistics when they want to feel really empowered, they feel like they need to push their stuff really into people's faces. And I find that that doesn't work. I find it's easier to have a conversation with someone at lunch who sat next to you during an entire conference and had no idea you were using a fidget the whole time and had no idea you were autistic. It's an extremely effective conversation. Right? And so that I'd rather have that conversation than be yelling in people's faces, or I can use whatever fidget I want and whatever environment ADA. Right. That's not nice.
Speaker 1 01:12:08 Well, I've, I've learned so much from this conversation and I really appreciate you being so vulnerable and transparent with telling me in the world about autism, because it's, there's just so many nuggets of information in here. So we'll end on, give us your plugs. Where can people find you?
Speaker 2 01:12:28 I am easy to find. I am. Everything on my website is on my website. Rather. It is Becca lorie.com and it's L O R y.com. And I've literally put everything in there because as an autistic person, I need to be organized. Yeah. So all of my social media is there. Samples of my writing is there my YouTube channels up there. You can sign up for my free newsletter. There. You can look about the course while you're there, which just dropped in price. Actually I was running it live. And when I run it live, I do it with people. I do the course lecture, live costs a little bit more, but if you want to do it yourself and watch just the recordings, I have it up there for like almost half the price to do the recorded version. I'll be doing it again. Live, come 2021. I'm running through it again. But if you want to do it before then, or you want to do it on your own for a little bit less, feel free to, to grab it. Okay.
Speaker 1 01:13:16 Thank you so much, Rebecca. I really appreciate your time and we'll talk to you later. Fantastic. Thank you, Carmen.
Speaker 0 01:13:23 You're welcome. Bye. Thank you friends for listening. Please rate and follow this podcast or text card at (470) 588-1215 with comments and suggestions tune in next week for another disability topic.