Dr. Gwynette: Hello everybody and welcome to The Autism News NetWORK Podcast. My name is Dr. Frampton Gwynette and I am here today with?

Avery: Avery.

Dr. Gwynette: And?

Ainsley: Ainsley.

Dr. Gwynette: Avery and Ainsley thank you so much for being here. We are coming out here from the Medical University of South Carolina in Charleston, South Carolina. As it turns out, this is our very first podcast. So I wanted to thank you both for being here to talk about autism. So you guys ready to talk a little bit today?

Ainsley: I am.

Dr. Gwynette: Okay, cool. Well I know we had talked a little bit before the show about how people think of autism and one of our big goals for this podcast is to change the way people see autism and think about it and we’re bringing a unique perspective, which is to see autism through the eyes of someone who has autism. So to start off, I think there’s a big perception out there that autism is a bad thing or like a flaw of some kind. What do you guys think about that?

Ainsley: I don’t think it’s a flaw at all personally. And I don’t think it’s a bad thing. It makes you different and unique and people can help you, your family can help you, your friends, your peers, and even your own psychiatrists can help you. And if you actually need one, you can also have a service animal to help you out.

Dr. Gwynette: Absolutely. And we’re going to talk about one service animal in particular later on this podcast who is very near and dear to our hearts. Avery, what are your thoughts about how the world sees autism as a flaw or a disorder? We had talked about it like, oh, it’s just a different way of seeing things, right?

Avery: I’m sorry.

Dr. Gwynette: All good. Well let’s take it on a lighter topic. So you mentioned that today you discovered something going on in your yard and it was a mystery for a little bit, but can you tell us about what that mystery is?

Avery: I don’t think that has any relevance to do with the podcast.

Dr. Gwynette: Well, what I was thinking is it was kind of puzzling you for a while. And what was interesting to me is that, do you want to tell the audience what is happening in your backyard?

Avery: Well, what’s currently happening in my backyard is that there is a shell for an in ground pool that has been placed near the back yard essentially.

Dr. Gwynette: Yeah. And now it’s going to take a few days for construction and so forth to happen. Right?

Avery: Yeah. And the digging should start today.

Dr. Gwynette: Okay. And when a project like that’s going on around your house, is that maybe more disruptive for somebody who has autism spectrum disorder versus somebody who doesn’t?

Avery: No. It greatly varies in degree, but yes is most certainly does. Sorry, I’m getting anxious just thinking about it.

Dr. Gwynette: Yeah. Is it like the noise levels from the construction or is it just having people who you don’t know around?

Avery: Well, those are both relevant things. Having anxiety issues because of crowds are one thing, but crowds are just a combination of noise and people. It’s sometimes relevance to… Oops, I accidentally touched the table.

Dr. Gwynette: You’re fine. You’re fine. There is something like a pool installation, throw a major curve ball at you because it’s different.

Avery: Well another thing would be probably be how just change affects us. Like any form of dramatic change can also bring out a certain level of anxiety. We all feel anxiety one way or another. But the way we feel it, a lot of the time it feels like it’s amplified to a certain degree.

Dr. Gwynette: So maybe for some people getting a pool installed is exciting and I can’t wait and it’s all positive. But maybe for somebody on the spectrum, it is a good thing. But it’s also a stressful thing because it’s something new and something noisy and-

Avery: Because, well, usually when construction happens, there’s a lot of noise and there are people that you don’t know and it makes me in particular uncomfortable. Not everybody’s going to be like that, but I get really anxious.

Dr. Gwynette: Yeah, it’s understandable. And as a psychiatrist specializing in autism spectrum disorder I do hear that a lot from patients. So you’re in good company. And Ainsley, now Avery mentioned the routine. And I know you and I have spoken about things that you’d like to do on Friday nights in terms of going out to dinner. Can you tell us, you don’t have to mention the name of the restaurant, but just tell us about that pattern and then also like what happens if the pattern changes and how it makes you feel?

Ainsley: Oh sure. I would love to talk about that. So every Tuesday we go out to a barbecue restaurant and every Friday we go out to a Mexican restaurant. And if that routine gets disrupted, I get upset and I get angry. And I start to cry. And people say that being flexible strengthens you, but I don’t see how it would strengthen me because we have to follow the routine and it just makes me upset whenever it’s interrupted in general and yes.

Dr. Gwynette: Yeah. And so do people ever say to you like, “Hey, we’re not going to do that tonight, get over it.”

Ainsley: Well, my mom and dad say, “You better stop that attitude.” And it makes me even more upset because I like a routine.

Dr. Gwynette: Yeah. So even for parents, I know your parents are wonderful as you mentioned, supporting you, even for parents at times it can be difficult to see the full picture of the need to stick with that schedule. Yeah. And then going back over to Avery, Avery you mentioned something I thought was really cool. Like when you go to waffle house, you have a set thing that you like to do with your food. Can you tell us about that?

Avery: I have a kind of this ritualistic thing when… I guess it’s because of the shape that the waffle is in. I cut it into the fourths then cut each fourth in half into wedges. Then I carve a circle out of the center of the waffle and cutting the wedges to the point where the wedges have been cut again, and then I have to meticulously place each individual bit of waffle around so that I can evenly displace the syrup.

Dr. Gwynette: Yeah, and that’s just kind of comforting for you. Is that what makes you a little bit less anxious when you’re eating there?

Avery: Sometimes. I do a lot of different things when I’m eating food. For example, whenever I eat a sandwich, I have to eat the crust first and then I eat the rest of the sandwich so I can separate those two things.

Dr. Gwynette: Yeah. Do people ever look at you, either of you when you’re eating and say, “Hey, why do you eat in that way?

Avery: Well, I guess as far as those are concerned, I guess a lot of people don’t notice because they’re very subtle things. Some people may ask, it’s not very common, but even if it doesn’t appear to be there, it’s there. You can see it just below the surface no matter what I’m doing.

Dr. Gwynette: Exactly.

Avery: It’s pretty much there all the time.

Dr. Gwynette: Yeah. And like you mentioned, it’s just there below the surface and most of the time you might be able to camouflage it, but sometimes it’s not so easy. And Ainsley you mentioned food and some of the particulars about things you like to eat and some that you can’t. Can you give the audience a little bit of detail on that?

Ainsley: Of course. So I’m very picky about what I eat and how I eat food. Well, not necessarily how I eat food, but what type of food it is. For example, if something is spicy, I won’t eat it. If something looks spicy, I won’t eat it. If something is smoked, I won’t eat it. And here’s an example, we were at Outback Steakhouse, the Australian restaurant, and I ordered the pasta dish and when I took a bite, instantly my mouth was on fire. And so I asked the waitress, she was really nice. “What do you put in the pasta?” “Oh, a sprinkle of cayenne powder.” Okay.

Dr. Gwynette: And that was it. That set it off.

Ainsley: Yep. And I’m like, “Okay, thank you.” And later on I told dad that was not a sprinkle, that was more like a deluge of the powder.

Dr. Gwynette: Wow. It’s like a four alarm fire.

Ainsley: Yes. And I have never had that pasta again and they have taken it off the menu, which I am very happy about. And I’m fine with some of the foods that I eat. Pasta is one of them. And whenever my dad cooks on the big green egg, he double wraps mine in foil and he puts it on the grill.

Dr. Gwynette: To keep the smoke flavor out?

Ainsley: Yes.

Dr. Gwynette: Yeah, that makes sense. It sounds like you’re exquisitely sensitive to certain tastes or certain textures and that can have a big impact though when you’re in a social situation, you might not have a choice like a restaurant. You’re like, “I just got to go with it.” It’s not fun.

Ainsley: Yeah. It’s really not that fun.

Dr. Gwynette: Yeah. And then Avery, you had mentioned kind of randomly that a lot of the foods you end up eating are the same color.

Avery: Yeah. I don’t intentionally do that. It’s just happens to be the same color all the time.

Dr. Gwynette: Yeah. Things like bananas and apples.

Avery: Yeah. When you cut them and take them pieces, it’s relatively the same color.

Dr. Gwynette: Yeah. That’s interesting. Switching gears a little bit, the three of us have talked a lot about the concept of autism and do you guys remember when you first learned that you had autism that first time you really were aware that there was something different?

Ainsley: Well, for me I was in the fourth grade and my mother and father came in and they read a book called All Cats Have Aspergers. And I was surprised to see them because I didn’t know what they were doing. And later on they told me that I did testing with Mr. Weidner and that he diagnosed me. And when I asked couple of months ago this year, she said that, you did testing and he told us that you had autism and we asked what we could do to help. And I told mom, you didn’t say anything like, “You didn’t tell us or our daughter has autism.” And I said, “You didn’t get mad or anything?” She was like, “No, no we didn’t get mad.” And I don’t remember my reaction. I was so young. I was in the fourth grade and I didn’t suspect anything of it.

Dr. Gwynette: And Avery, do you remember anything, your first recollection of how you learned that you have autism?

Avery: To be honest, when I learned I was eight, I believe. I was either eight or nine. Pardon me my memory’s a bit fuzzy at that time.

Dr. Gwynette: No, sure.

Avery: I didn’t really think one way about it. I mean I may be different, but it didn’t really face me I guess.

Dr. Gwynette: And growing up, did your peers let you know that you were different? Did you sense that?

Avery: I mean, I’ve always sensed a little, but I try to move past that and I just.

Ainsley: Well for me I’m worried that I might get teased again and I don’t feel comfortable with mom telling people that I have autism and it just makes me feel awkward. And whenever we go to Disney World, we’d go to guest relations and she’s like, my mom’s says, “Tell them what you have, tell him what you need.” And I say, “You do it mom.” And also there was a surprise. We were eating at Pico Spills restaurant and there was a worker there with autism and her name was Ashley and we both had autism. So that was really surprising.

Dr. Gwynette: Oh wow. That’s amazing. That’s amazing. So yeah sometimes it’s tough to put into words when somebody needs to know that you require support. I wanted to ask, you guys have put a ton of work into The Autism News NetWORK and this podcast actually is kind of a big moment for us, but can you describe your different roles and activities within The Autism News NetWORK?

Ainsley: Sure. I’d love to. I am the editor in chief of The Autism News NetWORK, which means I work on the monthly newsletter and I also help give out ideas and things about stuff that we do. And we’re working on videos for a therapy park, which is going right behind the IOP building. And it needs a lot of work.

Dr. Gwynette: Yes, it does. We toured through there last week, didn’t we?

Ainsley: Yes.

Dr. Gwynette: What’d you think of this space, Avery?

Avery: It has a lot of potential, but a lot of it is barren.

Dr. Gwynette: Yes. So there’s an area in our institution that maybe now transformed into a therapy park, but yeah, it has a long way to go. And Avery, tell us about your work at The Autism News NetWORK.

Avery: Well, I’m the lead cinematographer. Essentially, what I do is I set up the shots of each individual camera and try to… Essentially, I’m just a camera man really.

Dr. Gwynette: But it’s a lot of work, isn’t it?

Avery: I mean, yeah, I mean my job is to essentially make sure we get as close to right the first time, which I’ve made a lot of mistakes of, now reflecting.

Dr. Gwynette: But then learning isn’t it?

Avery: Yeah, that’s kind of the point.

Dr. Gwynette: I’m just kind of new at this.

Avery: Well, so what I was saying before, my job is to try to get the shot right the first time so the editing team can get the editing that they want done without having to deal with every single screw up that I do.

Dr. Gwynette: Exactly. So a lot can be accomplished with the editing software, but if the shot’s not good it really goes downhill, doesn’t it? So I’ve seen you put a tremendous amount of time into the spacing and the light quality and the perspective, it pays off, doesn’t it?

Avery: It does. It does. I still can do better. That’s the thing you can always try to pursue to do better.

Dr. Gwynette: That’s right. And do you feel support from the other Autism News NetWORK participants from them to keep you encouraged?

Avery: I think so. We’re worlds trying to manage to… Well I guess, what’s a good way of wording it? Learn to master the skills at some point, but I guess yeah.

Dr. Gwynette: Yeah. And you guys are doing a great job and we do everything together, don’t we?

Avery: Oh yeah. We make decisions a lot of the time together as a group. Basically we put most things to a vote.

Dr. Gwynette: Yeah. Very collaborative and Ainsley you look like you want to say something.

Ainsley: Yeah. It’s very rewarding and it helps me get out of the house more. So yeah.

Dr. Gwynette: Yeah, absolutely. I think that’s a big factor because it is a challenge just to get there every week because there’s so many reasons that we could think of not to go there. Like, hey, this is going to be a group setting. It might be stress provoking or transportation can be a challenge. But you guys managed to get here just about every week, don’t you?

Ainsley: Yeah.

Avery: Yeah, for the most part.

Dr. Gwynette: Yeah. You’ve really hung in there. Now I know we’ve got to get to our favorite furry friend who we alluded to earlier, Ainsley who is this guy I keep hearing about named Oso?

Ainsley: Oso is my Australian Labradoodle. He is my autism service dog and I love him very much. When I first got him, I had no idea that my parents have been keeping him a secret for very long and when we drove to get him, we met the breeder in the parking lot of Tractor Supply and I was like, “Are we meeting someone? Are we meeting a celebrity?” And my mom was saying, “You’ll see, you’ll see.” She will not tell me neither one my dad. And when I first held him I almost cried because he whacked his tail as if he somehow knew I was his. And that thought still makes me want to cry and I have a video but I can’t show it obviously because you’re on a podcast.

Dr. Gwynette: That’s right.

Ainsley: And I love him very much. And we also have his sister, Sable, and we’re thinking she could be an emotional support dog because she loves to cuddle and she loves playing with those. She loves the family in general and-

Dr. Gwynette: They’re a great pair.

Ainsley: They are.

Dr. Gwynette: And a funny story about that is I saw your mom in a nonprofit charitable function, and she showed me a picture of Oso before you knew about it. So I actually got to see a picture of him before you even knew just by chance. So that was pretty cool.

Ainsley: That is really sweet.

Dr. Gwynette: Yeah. And Avery, I know you have an artistic side, don’t you?

Avery: Yeah. Well I guess in my pass time I just like to draw.

Dr. Gwynette: Yeah. What does drawing do for you? Is it therapeutic?

Avery: It’s very therapeutic for me. It’s something that I can actually focus better a lot of the time on a lot of the things when I’m drawing rather than when I’m not. I kind of end up in this, because of the relaxed feeling I get from when I’m drawing sometimes. It allows me to engage more a little bit when I’m actually physically drawing than when I’m not.

Dr. Gwynette: Yeah, which seems like paradoxical, right? Because a lot of times if someone’s drawing you would think like, hey stop drawing and pay attention. However, for you it’s a different story.

Avery: It’s not about like completing it or getting it like a complete finished product. It’s more like something that I can do to relax and just let my mind wander towards this subject without panicking or stressing out.

Dr. Gwynette: Yeah, that’s a great way to describe it.

Avery: Just take the little bits and pieces of information at a time and just mindlessly draw pencil over paper.

Dr. Gwynette: Yeah, that’s fantastic. So we’re going to conclude here, but I wanted to thank both Avery and Ainsley for being here today and being so honest and kicking off our very first podcast with The Autism News NetWORK. And for those of you who are not familiar with us, you can go to theautismnewsnetwork.com. The Autism News NetWORK is a media corporation that produces content about autism, and all of that content is written, produced, and directed by adults with autism here at the Medical University of South Carolina. So we hope that you will join us for our next episode of The Autism News NetWORK podcast. Until then, have a great day.