Dr. Gwynette: Hello and welcome to the Autism News NetWORK podcast. This is an audio and video podcast, and you can follow us on theautismnewsnetwork.com. That is our website. We also have social media on Twitter, Facebook and Instagram, the Autism News NetWORK. You can follow me, Dr. Gwynette, at D-R-G-W-Y-N-E-T-T-E. That’s @drgwynnette on Twitter and Instagram. I work at the Medical University of South Carolina, and I’m joined today by two very special guests, Ms. Ainsley Knight, who is the editor in chief of the Autism News NetWORK, newsletter and website. Hello, Ainsley.

Ainsley Knight: Hi, Doc. What’s up?

Dr. Gwynette: Not too much. Thanks for being here. And who’s there sitting to your right?

Ainsley Knight: This is my… Can I say it? This is my momma bear, Amber Knight. She teaches at Nativity and she is a wonderful mommy to me.

Dr. Gwynette: Yes. Thank you for being here, Ms. Knight. We’re really appreciate you guys taking time to do the podcast.

Amber Knight: Thank you for having me.

Dr. Gwynette: Yeah, absolutely. And Ainsley is a veteran. I believe this is your third pod with us, right?

Ainsley Knight: Yes, it is.

Dr. Gwynette: Yeah. So you’re a seasoned veteran now and we wanted to bring you on because of course, we’re going through the coronavirus pandemic and other lockdowns and every state’s different, but in South Carolina, we’ve had our share of restrictions. And I wanted to ask, how are you holding up with the restrictions? And what’s been the most difficult thing for you?

Ainsley Knight: Well, the most difficult thing for me would be not going out to eat because of our routine and stuff, we’ve been picking up food. We’ve been picking up Melvin’s. La Carreta, we don’t know if they do take out and I’ve been trying not to go crazy, trying not to go insane. But this pandemic has really put a damper on my mood. I was in a bad mood yesterday.

Dr. Gwynette: Yeah. It’s been tough for everybody. For those of the audience who try to understand, since you have autism and you want to stick to that routine with the restaurants, can you take us through your thought process? When you hear, “Hey, this restaurant’s closed or we can’t go to La Carreta on Thursday nights or Friday nights, what goes on in your head that becomes stressful?

Ainsley Knight: I’m worried that it’s going to close down forever and I’m worried that we won’t be able to go anymore, and I’m worried that people there, the workers there, they’re so nice. They know us, they know what we order every time. And I’m really worried that they’re going to lose their jobs, because as you know, people have lost their jobs due to this pandemic.

Dr. Gwynette: Yeah. And so let’s say they close down forever and the workers lose their jobs, obviously be sad for them, where would that leave you if one of your favorite restaurants closed forever?

Ainsley Knight: For me, I’d just have a meltdown. I’d be like, “I miss La Carreta so much,” and I’d have a wad of tissues piling up by my lap. I’d just be really upset. And someone would say, “Well, at least there’s Melvin’s.” “Well, it’s not the same. Melvin’s isn’t La Carreta and La Carreta isn’t Melvin’s.”

Dr. Gwynette: Right. And so mom, you’ve seen this, and what’s your perspective on how it plays out and how tough is it for you to watch her go through that?

Amber Knight: Yes. We try to divert from the routine a little bit so that she learns to be a little more accommodating. However, at this time, keeping something constant has been important. So our Tuesday night routine, fortunately, they have been able to do take-out and drive through. So that routine has been constant, so we’re not having that meltdown. But the other meltdowns of not having our Friday night… Our Friday night routine’s messed up, we can’t go somewhere. She’s hearing on the news that things are opening up, and in our opinion, it’s not time to go out yet. I’ve taken her a couple of places and she is tempted to touch everything, even though we’ve gone through the drill of this is spread by touch and those kinds of things.

Dr. Gwynette: yeah. So you’re hearing news that the government has officially opened these places, but then as a family, you’ve got to make a personal family decision about what’s best for you and your family. And that might cause friction in Ainsley’s mind about what should or should not happen.

Amber Knight: Right. And she constantly asks, “Well, when? What is the date? When can we do this?” So we have to come up with a plan. Well, two weeks of letting everybody else go out and do everything and then we’ll assess it again and see if we think it’s best for our family.

Dr. Gwynette: Yeah. In my head, as you were talking about that, it’s almost like some people will think, oh, I want to go to this restaurant, and it’s almost like pushing a ball up a hill, “Hey, I want go to the restaurant,” and someone says, “Hey, the restaurant is closed.” Well, the ball just rolls downhill and then you try to roll it somewhere else. But I think in Ainsley’s case, it’s like the ball is on top and it keeps rolling down in this case to La Carreta, La Carreta, La Carreta. It’s almost like a driven focus thing on that one place, right?

Amber Knight: Oh yes. And it can’t be diverted to anything else. We try to choose a different thing, because she has a brother and he would like something different on Fridays, and that usually causes a lot of angst.

Ainsley Knight: It causes me to cry and-

Amber Knight: Or comments that aren’t appropriate.

Dr. Gwynette: Right. Out of frustration.

Amber Knight: Our of frustration, right. And so then we have to remind that she’s not the only one in the family, who’s paying the bill, that kind of thing.

Ainsley Knight: But I have paid.

Amber Knight: There’s a lot of lesson into trying to get someone on the spectrum to try something new.

Dr. Gwynette: Yeah. To be flexible.

Amber Knight: A full time job.

Dr. Gwynette: Yeah. And Ainsley, you’ve become aware that the inflexibility is part of your autism?

Ainsley Knight: Yes. And it’s really hard for me to try something different, like a different restaurant per se. And it’s hard because routine is a routine. We do this and we don’t do anything else. It’s my way or the highway. It’s either my way or you get kicked out of the house.

Amber Knight: Ainsley.

Dr. Gwynette: Right. Exactly. And these little routines, I think to an outside observer might say these are small things, “Oh you can just go to a different restaurant,” but for Ainsley and for other people who are on the spectrum, it’s not at all a small thing. It’s a big thing.

Amber Knight: Right. And it is absolutely unbearable when it can’t be done the way that they envision, the day [inaudible 00:08:11]. If it’s not her birthday and it falls on the Tuesday or the Friday routine, there’s a lot of discussion about, it’s not your birthday, it’s someone else’s birthday and they get to choose.

Dr. Gwynette: Oh, I see.

Amber Knight: Constant social stories, I guess.

Dr. Gwynette: Right. Explaining to her how it’s going to go this time, that might be different from how she is used to.

Amber Knight: Right.

Dr. Gwynette: That’s very interesting because on this podcast, we’re bringing autism to the world so they can understand. But so often I think individuals on the spectrum have to adjust to the world out there and try to be like everyone else. And it’s really hard. It’s like a chemical reaction, each time the world says, no, or the world says it can’t be this way because there’s other people involved. And so Ainsley, that’s not only led to frustration and anger maybe, but you mentioned sadness, right?

Ainsley Knight: Yes. Whenever something doesn’t go my way, I start to cry and I just have a meltdown in general. So…

Dr. Gwynette: Yeah. And so these things can be very up and down. Do you think that over the years you’ve made strides in trying to be more flexible?

Amber Knight: You answer.

Ainsley Knight: I think so. And I’ve been trying to taste new foods and stuff and I’m trying to eat better, but I don’t think it’s working.

Amber Knight: No, it’s working.

Dr. Gwynette: From an outsider observer’s perspective, you seem like you definitely have your moments, but you’ve continued to move forward, which is great. And one of the things that I think is proof of that is your ability to work. And can you tell our audience about your job, actually two jobs, right?

Ainsley Knight: Two?

Dr. Gwynette: Depending on the season.

Amber Knight: Yes.

Ainsley Knight: Oh yeah. So audience, in the summer, I work at Splash Zone and in the winter, fall/winter, I work at the Holiday Festival of Lights and both times are hectic, and some customers get upset. Sometimes there’s a long line and I’m like, “Please sir, just wait your turn. We will get to you in a minute.” And some of the customers get upset and then I can’t handle it and I need a supervisor to come help me out.

Dr. Gwynette: So you’re really dealing with people a lot?

Ainsley Knight: Yes, I am.

Dr. Gwynette: Yeah. And that’s incredibly challenging for anyone. Do you feel like being on the spectrum, it’s been particularly challenging?

Ainsley Knight: Yes, because sometimes when a customer gets upset, I take it the wrong way because once the big pool at Splash Zone was being cleaned because someone had an accident and a man had his little girl with him and he was heading towards the big pool. I said, “I’m sorry, sir. The big pool is being cleaned out.” And he said, “This is ridiculous. I have my little girl with me.” And he steps toward me, stepped back, and I thought he was going to hurt me or something. I literally thought he was. And I said, “Please don’t walk like that toward me, sir.” I was just scared for my life. I was scared.

Dr. Gwynette: Sure. So in that case you were dealing with an angry customer and when we talk about individuals with autism in the work environment, there are several factors we think about like, is it a climate controlled environment? Is it indoors or outdoors? How much contact is there with people? Some people might just be tearing tickets at a movie theater, pretty straight forward. Other people may have to do interactions. And so for your job, going to the climate thing, tell us about the weather during the Splash Zone season.

Ainsley Knight: Oh my goodness, it is unbearably hot. I sweat, but not excessively. And some days I’m in the shade some days, and then the heat, picking up trash and stuff, litter picking as they call it. And in the winter it gets cold during Holiday Festival Of Lights, and I have several layers of clothing on and I still shiver and I still feel cold, and I thought, maybe I should have brought an extra jacket or maybe should have brought my comfy.

Dr. Gwynette: Right. And so with individuals on the spectrum, we experience things like being sensitive to certain textures or weather sunlight. We see that in our patients and you’re dealing with a lot of factors. Yeah. Yeah, and-

Ainsley Knight: Yeah, I really am.

Dr. Gwynette: So this is a job at a County park. In the summer it’s a water park, in the winter it’s the Holiday Festival Of Lights. But one thing, attending that winter festival lights, it’s crowded.

Ainsley Knight: It really is crowded. Some days it’s not. And some days it is. And there’s a lot of people at the fire pits, people lining up at [inaudible 00:14:33] shop, getting a stuffed animal. And that night that we went, it was sort of cold and it was crowded. At least we had food, we got funnel cake fries and stuff, but I didn’t get to purchase a single thing.

Dr. Gwynette: Yeah. As the Autism News NetWORK, we took our whole staff to go visit Ainsley on the job at the Holiday Festival of Lights, and everybody had a great time. But yeah, I was so impressed with how you navigated through that situation with so many people. And I remember two years ago, we visited you when you were working in the gift shop. That place is popping all the time.

Ainsley Knight: It is, it’s crowded. And every now and then someone will break something. And whenever I hear something break, I’m like, “Oh no, please, no. That’s why you look with your eyes and not with your hands,” as mom says.

Dr. Gwynette: Then you have a situation that you have to deal with a person and an uncomfortable discussion, right?

Ainsley Knight: Yes.

Dr. Gwynette: And mom, you’ve seen her at work. And how do you feel like she’s handled the challenges at work, from your perspective?

Amber Knight: I think she’s done extremely well. Of course in the last year, it was much better than the year before. She works for a wonderful staff that understand and are helpful and prepare her for what it’s going to look like this day, where are you going to be? What tasks are you going to have to follow? It’s not all honeys and rainbows.

Ainsley Knight: I wish.

Amber Knight: And her behavior, but when we have a glitch, they are very accommodating and work it out, give me a call and see what needs to be done to make everybody successful.

Dr. Gwynette: That’s great. So there’s support there?

Amber Knight: Oh, very much so.

Dr. Gwynette: And this is a theme that I want to really drive home for the audience, is that individuals on the spectrum, they’re going to do the work. Whether it’s school or a job, they’re going to do the work. They just may need some support. And so early on in this particular role, you don’t have to get too specific, but were you all pretty open about the diagnosis and the need for a little support?

Amber Knight: Well, we shared that with the managers and when she had a little glitch with, I guess an assistant, the manager was not able to tell the assistant this information. They needed Ainsley to tell the information. So in that meeting, Ainsley shared with this assistant and the assistant was, “Oh my goodness. I know about this. And I have worked with other younger children that are on the spectrum.” And so it was like, they didn’t assume there was a diagnosis, but once they’re told there’s one, “Oh, that makes sense.”

Dr. Gwynette: And I think that’s a great point, mom, because if any of our audience were to see Ainsley walking in Walmart or in the grocery store on the street, and that goes for a lot of people on spectrum, you would never know anything’s going on.

Amber Knight: Right. When I teach my students at school about learning differences, I tell them. I said, with autism, there’s not a sign. There’s not a look or anything like that. People aren’t walking around with a neon sign that says I have autism, or they don’t have a certain look about them. So we have to observe their behavior and say, “Well, what do I think is going on? Why do I think they’re behaving that way?” And so that’s what I do to empower my students to understand learning differences that way.

Dr. Gwynette: Yeah. It reminds me of that doing the work with support. We had a podcast probably five or six episodes ago where Ainsley, your comrade, Patrick came on. And his mom said, “He did it, but we just had a little bit of support along the way. Sometimes we had to do it a little differently.” And they were very open with the Scoutmasters and got that little bit of support so Patrick could do it, and he did it. And you’re doing it, Ainsley. It’s incredibly inspiring. Going forward, what do you think just, in the work environment in general, what are the things that you want to improve about your performance?

Ainsley Knight: I want to… I’m not really sure what I want to improve.

Dr. Gwynette: Well, I’ll ask an easier question. What are you saving up for to spend all that paycheck on this summer?

Ainsley Knight: I’m either saving up to get an Apple watch as my mom is wearing right now, either that, or I’m saving up to get another game for my Nintendo Switch, because I need a new game bad.

Dr. Gwynette: That’s great. And I think you’ve already earned over the years, a Switch and then…

Ainsley Knight: AirPods. I almost forgot about that. AirPods, AirPods.

Amber Knight: That’s [crosstalk 00:19:54] is having a goal, because every day is not something that they want to do. They don’t want to go to work. So when they have a goal in mind, then it is very helpful.

Dr. Gwynette: Yeah. Tell us about those moments when work doesn’t sound like something we want to prefer to do today, how do we get past that?

Amber Knight: For mom or for Ainsley?

Dr. Gwynette: I’d say for mom first.

Amber Knight: Well, I tell her that she has an expectation that she’s been given a privilege, because they chose you out of other employees to do this job. And just like being on a team, you can’t quit because things weren’t going… I wanted to sleep later or it’s too hot outside, that you’ve made a commitment and you can’t let someone down. And if you would like to see this end goal of the positive purchase, then you need to do what is necessary. That we all don’t want to get up and go to work every day but it is something that we have to do and we contribute to our society by doing that, to our families. One trade is, she wants [Oso 00:21:10] to come to pick her up. Well, I need a positive report if I’m going to bring him back when I come pick you up. So there’s lots of little, I guess, carrots to dangle to help.

Dr. Gwynette: And Ainsley, take us through. So let’s say you’re sleeping, got the pillow over your head, alarm goes off, you hit snooze. Mom comes in, you don’t feel like it today. What do you tell yourself that gets you up and out the door?

Ainsley Knight: If I do this and if it all goes well, Oso will be there in the car when mom picks me up and then I’ll get closer to my goal, and I get the thing that I want. And all goes well.

Dr. Gwynette: That sounds like a human being. We are motivated by those goals, aren’t we?

Amber Knight: That’s right.

Dr. Gwynette: Yeah. So if you want something, go out and get it, right?

Ainsley Knight: Okay, sounds good.

Amber Knight: You have to work for it.

Dr. Gwynette: That’s kind of the American dream, but yeah. So yeah, I think it’s terrific that you’re doing that and we’ll continue to support you at the Autism News NetWORK. Do you want to give a shout out to where you work?

Ainsley Knight: To where I work. I thought already did.

Dr. Gwynette: Is it a shout out to what, Charleston Parks Department?

Ainsley Knight: Oh, shout out to Charleston County Parks. Thank you for supporting me and for understanding my diagnosis and I will try to do better. Gosh, that sounds so wrong. And I will try to be more helpful, even if it causes aches in my back or-

Dr. Gwynette: That’s great.

Ainsley Knight: … aches and pains. And love you, Charleston County Park.

Dr. Gwynette: That’s awesome. That’s wonderful. So we’re going to pivot gears a little bit. I was going to talk about your work at the Autism News NetWORK. So you’ve been there a little over two years now. And first of all, how do you feel about the News NetWORK, just big picture? What’s it meant to you?

Ainsley Knight: It’s helped me get out of the house more instead of being with the puppies all the time, and it’s helped me be motivated and stuff. And I actually have a job there, doing the monthly newsletter. And I promise I will get that to you as soon as I can, I’m almost finished with it. And everyone’s supportive there.

Dr. Gwynette: Yeah. And what kind of things do you like to put in the newsletter?

Ainsley Knight: I like to put treatment of the month, member of the month, events that are happening, but the past two months I’ve had to put, due to the virus there are no events going on at this time.

Dr. Gwynette: Yeah. So I remember like around Halloween you had information about hayrides or haunted houses and then fast forward now to May, all those fun stuff like carnivals and things that are going on, they’ve all been canceled.

Ainsley Knight: Yeah, it’s a bummer. And I’m just hoping the governor speeds this okay up, so we can enjoy stuff again and hopefully the fair will be open this year too.

Dr. Gwynette: Yes. And that’s in October?

Amber Knight: It is.

Ainsley Knight: October.

Dr. Gwynette: Yeah. That’d be nice. And mom, from your perspective, have you seen growth on Ainsley’s part through her participation in the program?

Amber Knight: Oh, leaps and bounds. When you approached us with this plan, it was, oh my goodness, this is going to be wonderful, but never in our wildest dreams did we think it would be this wonderful. Just the confidence, she’s got my aunt following you guys, seeing what’s coming up next. I’ve been fortunate enough to be around the entire group and just see the growth in all of them, it’s absolutely phenomenal what this program has done.

Dr. Gwynette: Yeah. That’s great to hear that. I’ve seen the same thing with Ainsley, because she has a lot of gifts. One of them is never being shy about being on the camera and interviewing people. Because we need people to be on camera, because that’s not everybody’s thing.

Amber Knight: Exactly.

Dr. Gwynette: Yeah. And then a little sneak preview for our audience, we are very close to interviewing the mayor of Charleston in June, coronavirus permitting, but Ainsley’s going to be, God-willing, on set with the mayor and asking some questions. I hope it’s not too hard hitting of an interview, because he’s had a lot of stress recently, but we’ll ask him some good questions. What a wonderful opportunity.

Ainsley Knight: Yeah. I’ll have a script that I’ll read from and hopefully, all will go well and hopefully the masks will be no more because I cannot breathe with those on.

Dr. Gwynette: Yeah. That would be nice. That would be really nice. Yeah. So you’ve done a terrific job. Tell us about this new body art you have.

Ainsley Knight: Oh, all right. So for those of you in the audience, I was visiting my grandparents, my mom’s parents, social distancing. And we were about to leave even though I didn’t want to, mom, and I had my finger like this and I shut the car door and it came down to my finger. And I screamed there was blood on the driveway and I was fainting. Mom’s like, “You need to stand up. Stand up.” And unfortunately, no one called 911.

Amber Knight: It was not that… Quite-

Dr. Gwynette: And is it a sprain or a fracture?

Ainsley Knight: Slight fracture at the tuft of finger and I have to wear this splint for four to six weeks. I’m just hoping it heals really, really quickly. And I might lose my finger nails. So…

Dr. Gwynette: Yeah, you might. Was it pulsing when it happened? Like-

Ainsley Knight: It was throbbing. It was so [inaudible 00:00:27:40].

Dr. Gwynette: That hurts.

Ainsley Knight: And when I came home, Oso jumped up and I was like, “Dow, Oso.” And then he saw the splint, he paused, saw the splint.

Dr. Gwynette: Yeah. Got to check it out, right?

Ainsley Knight: Yeah. He licked it. He worried about me.

Dr. Gwynette: Well, in our last couple of minutes here, I wanted to ask both of you the same question about dreams for Ainsley’s future. And I guess we’ll start with Ainsley. If you wouldn’t mind, can you tell us a little bit about your dreams for the future, where you see yourself in five to 10 years?

Ainsley Knight: All right. For me in five to 10 years, I see myself, hopefully fingers, crossed in college, living in a dorm, because I’m really ready for that. And I also see myself living on my own with Oso in a really nice house, a mansion possibly.

Dr. Gwynette: Oh, that’d be nice.

Ainsley Knight: With six, six bedrooms, six bathrooms, five to 10 guest bedrooms.

Dr. Gwynette: Yeah. You need that for a 20-something female with a dog. Sure.

Ainsley Knight: Yep. And a pool. And your air hockey, ping pong, an arcade room, an entertainment room.

Dr. Gwynette: Yeah. So it sounds like a huge compound is where you’d like to live?

Ainsley Knight: Yes.

Amber Knight: Small dreams. Small dreams.

Dr. Gwynette: Yeah, small dream. And then mom, how about you? Do you have any dreams for Ainsley that you’d like to see her achieve?

Amber Knight: The independence, of course is one of the things that we dream about.

Ainsley Knight: Oh, thank you, mom.

Amber Knight: I really, really would love to see the Autism News NetWORK expand to where this is her gift, is being in front of the camera, talking, interviewing, performing. She has no worries about getting up and doing that. So seeing that expand into something that could possibly be full time, that would be the best dream.

Ainsley Knight: And doc, I’ve had this dream for a while. I thought of it a couple of years ago. I could have my own talk show, a Million Laughs with Ainsley, because I make people laugh and feel better and I can see myself on TV, my family watching me and me telling my story to a celebrity like Avril Levine or Taylor Swift or-

Dr. Gwynette: That’d be awesome.

Ainsley Knight: … Drake or anything like that and the audience laughing.

Dr. Gwynette: Yeah. One of our goals is, let’s say a celebrity’s coming through Charleston someday, if the Autism News NetWORK continues to grow, we would hope that say, Taylor Swift was in town for some reason, she would call us up and say, “Hey, I want to come by and do an interview while I’m in town.” I’m going to visit the Children’s Hospital and stop by the Autism News NetWORK and do an interview, that kind of stuff.

Amber Knight: Right.

Dr. Gwynette: So I think that’s a great goal, Ainsley. I really do. And we’re bringing the world of autism to the masses, versus having everybody else tell our participants what they should be doing.

Well ladies, thank you so much. It’s always a pleasure to have you guys on the show. We look forward to the day that we can meet in person with our Autism News NetWORK group. We love Zoom, but we love seeing each other in person better, because it’s all about those personal relationships and connections. So yeah, thank you guys so much. Any other parting words of wisdom?

Ainsley Knight: If you’re afraid of the camera, don’t be afraid of the camera. It’s not a person, it’s just a lens. It’s not staring into your soul. Just don’t be afraid of the camera.

Dr. Gwynette: Yeah. The camera’s your friend.

Amber Knight: And I would just like to say, thank you Dr. Gwynette for coming up with this dream and making it happen. And it’s been awesome.

Dr. Gwynette: Yeah. Well, God is awesome. And he’s put it on all of our hearts, I think, and we give thanks to him for every step of the way that he’s helped us accomplish and he’s going to lead us the whole way. So thank you for saying that.

Well, very good. As we wrap up this episode of the Autism News NetWORK, you can find Ainsley’s work in the newsletter at theautismnewsnetwork.com. We have a news tab. You click that and you can hit coronavirus or newsletter. You can see all about Ainsley’s work. You can also follow us on Twitter, Instagram and Facebook. We are the Autism News NetWORK and you can follow me on Twitter and Instagram, @dr.gwynette. So we look forward to our next visit with you. Thanks so much and have a great day.