Podcast — 48 Minutes

Episode 13: Reaching Adulthood Before Realizing You Are Autistic

Podcast — 48 Minutes

Episode 13: Reaching Adulthood Before Realizing You Are Autistic

Ben shares what it was like growing up without a diagnosis.

What is it like to grow up without realizing there is an explanation for why you feel so different from your peers? Ben is a 35 year old male who was diagnosed with ASD two years ago. He is a researcher at MUSC who manages a lab that does Autism research and was kind enough to tell us his story.

You can follow Dr. Gwynette on Twitter and Instagram.

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Dr. Gwynette: Hello and welcome to the Autism News NetWORK Podcast. My name is Doctor Frampton Gwynette. I am a psychiatrist at the Medical University of South Carolina. You can follow me on Twitter @DrGwynette, that’s D-R G-W-Y-N-E-T-T-E, and Instagram with the same name. I am joined today by a very special guest named Ben, who is here with us today. Hey Ben.

Ben: Hi Doctor Gwynette. Thank you for having me.

Dr. Gwynette: Thanks for being here. We’ve been working up to this for a while, because we are just so excited to hear all the great stuff you’re going to talk about today. Can’t thank you enough for doing it on a very rainy and soggy day in Charleston, huh?

Ben: Yes. Totally.

Dr. Gwynette: We were talking just before the air about some of your family history. Where are you from originally?

Ben: I’m originally from Dallas, Texas.

Dr. Gwynette: Dallas, Texas. For those of you who aren’t aware, Ben was diagnosed with autism earlier in life. When you were growing up in Dallas, were you aware that you had autism?

Ben: Actually, I was born in 1984, so actually I was not diagnosed until I think it was a couple of years ago, officially diagnosed. Growing up in the 80s, no, I was not. I had so many unusual habits and mannerisms that my parents noticed, my teachers noticed, and there was no explanation at that time. When I went into preschool, I started preschool when I was three years old, so this would have been ’86/’87. My teachers noticed that I was different from everyone else in very noticeable ways.

Ben: For example, they would hand out a sheet for us to color. They’d give us a 30 minute session to color a page. All the other kids would just color everything in really fast with the crayons.

Dr. Gwynette: Scribbled in.

Ben: Yeah. They’d use different colors and stuff, but I would sit there and do each little section and try to make it perfect. By the time the 30 minutes ran up, I would only have about 10% of the picture colored in, and everyone else would have the whole thing. My teacher actually complained to my parents saying that I needed to go faster, because I’m turning in a picture that has … If it’s a person, it’ll be their right arm is colored in and that’s it, or something. I couldn’t stand being outside the lines.

Dr. Gwynette: You were very meticulous and really preoccupied.

Ben: Yeah. Another thing is that, I mean there’s a lot of examples I could give. Another thing is I remember we had a small library at this preschool I went to. It was actually at a private school. I remember they told us we could check a book out. I picked out a history book that was for, I think, first grader. It went all the way up to elementary school, so I wanted to check out the history book, even though I didn’t know how to read.

Dr. Gwynette: It wasn’t Doctor Seuss or some other kid’s book. You were picking out a book for …

Ben: Yeah. It’s not that I didn’t like Doctor Seuss or anything. I had those books up to that age, but I wanted to go through and look at the pictures. It had a lot of Native American history, the book that I picked, and I was looking at the pictures of them hunting buffalo and stuff, and pretending like I could read even though I couldn’t, looking at the words, and just going through and looking at the letters even though I couldn’t actually read. I was pretending I could read, because it excited me, the idea of being able to read. My teachers thought that was really strange that I was sitting there with this book and trying to read, or something.

Dr. Gwynette: Your interests were different than other kids right from the start.

Ben: Yes. Also, I started getting bulled almost immediately, starting in preschool. It was like I didn’t even realize I was being bullied. I remember, a really specific story is there were these actually, I think it was two kids, two other kids. We would have recess outside. I would play with these two kids, and I remember their names, but I’m not going to say their real names. I’ll just … Yeah.

Dr. Gwynette: We’ll protect [inaudible 00:05:11].

Ben: We would play during recess. We were three or four years old, so very young. We would be running around in circles, just that kind of playing. Not playing like an actual sport or on a swing set. We would just be goofing around type of playing. They would be pushing me down on the ground and laughing. This would be every day. I thought that was us playing. I thought that was normal, but they were ganging up on me. I would stand up. I would get up again and then they would run around me and push me down again. It was every day.

Ben: I remember not understanding that there was anything wrong with that, and they were laughing me. Then after preschool when my dad would pick me up a lot of the time, and he would ask me what I did. He usually would ask me who I played with. I would tell him, “I played with these two kids.” That’s all I would say. I wouldn’t say, “They kept pushing me to the ground and laughing.” I wouldn’t say that. I would just say I played with so and so.

Dr. Gwynette: The teachers weren’t really picking up on what was [crosstalk 00:06:42].

Ben: No. I don’t remember them ever noticing or caring. They weren’t punching me with their fists, but they were pushing me around and pushing me to the ground and stuff.

Dr. Gwynette: Even then there were signs. That’s really hurtful to go through that, and all these years you can still remember what happened.

Ben: Yeah. I remember it really clearly.

Dr. Gwynette: Were you sad at that point about it?

Ben: No. At that point I didn’t even understand what was going on. I would say probably as I got a little bit older, I would understand that I was being bullied. Maybe when I was five or six. At three or four years old, I didn’t understand that that’s what was happening.

Dr. Gwynette: How did you do in elementary school and middle school?

Ben: Really badly. Really badly. Well, I started out in private school, because I went to the preschool and I continued. This was like a private religious type school. There was some of that. There was prayer. We would say prayers in the morning, and things like that before class. It was that type of private school. The kids that went to that school, a lot of them had wealthier families, maybe not even necessarily super-wealthy or anything.

Ben: I guess let me just skip ahead, because I eventually went to public school. I do think the bullying at public school was much worse than when I went to private school. I know that’s skipping ahead. Because at the private school, even though I was teased and made fun of and stuff, I do remember kids making an effort at times to try to be nice to me, not all the time. It depended on who it was. There were some kids that were just mean spirited, and then there were other kids that tried not to be mean. I could remember.

Ben: During recess, everyone was playing football because it was Texas and football’s really big in Texas. I was terrible. Quickly realized I was terrible at sports, and all the kids were on sports teams, so I joined the teams because everyone did it. I was so bad at it. It was horrible.

Dr. Gwynette: You found yourself, it sounds like, being excluded a lot.

Ben: I was excluded a lot. Unless it was something where the entire class was being invited, like for a birthday party, I usually wouldn’t be invited unless it was the entire class or something.

Dr. Gwynette: Growing up did you have a lot of sleepovers or get togethers with friends, or was it kind of lonely?

Ben: Yeah. When I was at the private school, I did have some sleepovers, but my parents would set up with the other parents. I remember a couple of them were okay, but I remember this one kid. All I wanted to do, I wanted to play video games with him. This would have been back in the early 90s.

Dr. Gwynette: Early 90s.

Ben: There were some other kids in our class that lived nearby that were within walking distance, and he wanted to walk over there and play football with them. I didn’t want to, so he got mad at me. I remember that. He was sleeping over. He didn’t want to do what I wanted to do.

Dr. Gwynette: That’s hard, because you find yourself even at your own sleepover being excluded.

Ben: I had no interest in sports. I hated it. I’ve never liked playing sports.

Dr. Gwynette: I think people don’t realize that sports or other activities can be such a big part of how we socialize and make friends. I use an example that I recently got together with some high school friends. I’ve been out of high school for almost 30 years now. When I got together with some friends to go to a concert last summer in Chicago, as I was flying home I realized that we had all played baseball together. Even though I haven’t played baseball in 30 years, the reason that we became friends was partly because we played baseball. Thinking, like you said, if you’re not part of the sports teams or other activities, the friends just don’t come.

Ben: The thing is, is that I was on the teams at least when I was in private school, because pretty much every single boy was on the team at this private school. I was awful at the sports, so it was just a miserable experience. I would always get sit. I would just be either sitting on the bench or playing a position where I would just be standing there the whole time, or not actually doing anything with the ball, or actually contributing.

Ben: I remember one kid at one point telling me that his parent, like during a basketball game, his parents were laughing at me because during the game I wasn’t able to keep up with running. Because you know in basketball you have to switch sides of the court, the back and forth. I was not able to keep up with the running back and forth. I was going really slow. He told me his parents were laughing at me during the game.

Dr. Gwynette: Did those types of experience, I mean I [inaudible 00:13:01] put my psychiatrist hat on, but did those make you sad at the time?

Ben: There’s a part of me that wishes I could have stood up for myself a little bit more. Because I never really stood up for myself too much. If I could go back, I would just say, “I’m not playing sports. I’m sorry, but I don’t care if all the other kids are doing it.” That’s what I wish. At the time, I didn’t do that. I didn’t want to be the only kid in the school not on the sports teams.

Dr. Gwynette: Exactly. You’re trying to participate and be social. It sounds like that was a tough road. Then you get through. How was high school?

Ben: Well, I went to a military academy. I went to two different schools. I started in eighth grade, and went to a military school in Missouri for eighth and ninth grade. Then I transferred to a different school in Indiana from tenth to twelfth grade.

Dr. Gwynette: Why’d you go to military school?

Ben: I was in public school at that point, and the last year I did that was seventh grade. That’s the year where I started to have pretty severe depression. I started losing motivation. Up until seventh grade I was doing my homework. I was trying to do well in my classes, even though I was having trouble with bullying. Because I switched to public school in fifth grade, so fifth and sixth grade I was also in public school. I was having trouble with bullying and things like that, being picked on, but I was still participating in classes.

Ben: In seventh grade, the bullying I would say actually got a little bit better in seventh grade. It was like a junior high, so I was able to disappear more and not be noticed as much.

Dr. Gwynette: Sure. Like safety in numbers.

Ben: Yeah. I was able to just really be quiet and not be noticed as much. I started to suffer from pretty severe depression, and my parents actually had me going to see a psychologist at that age. I was about 12 or 13 years old. It just continued to get worse. I wasn’t doing my homework. During my tests I was just filling in answers, just randomly, didn’t even care. Barely passing some of my classes or not passing them at all. That was probably the main reason why. I believe I was diagnosed with depression, like bipolar depression.

Dr. Gwynette: At that point you’re depressed but no one had really recognized the autism yet.

Ben: No.

Dr. Gwynette: Looking back, do you feel like there was a connection between autism and depression for you?

Ben: Absolutely. Absolutely. I feel like if I was growing up now, it would have been extremely obvious that that was what it was. At that time, this would have been around 1997, there was not any discussion about that as being a possibility.

Dr. Gwynette: I think part of it, too, is the audience can’t see you, but from the outside no one would ever realize that you have autism. It’s really going on behind the scenes. You’re smart and you speak well. There are many stories that I hear in my practice of people falling through the cracks or slipping past the radar. Then they wake up one day in adulthood and realize or are told that they have autism. Looking back it explains a lot.

Ben: Yeah. For me it was actually a very slow process of realizing it myself before I was officially diagnosed a couple of years ago. I would say I began to start thinking about it when I was in my early to mid 20s. I’m about 35 right now, so I would say in my early to mid 20s is when I started to think about it. I think that I was in denial about it as well.

Ben: I was afraid of what it would mean. At one point I wanted to go to medical school, and I wanted to do things like that. I didn’t know what, you know facing up to it. It got to a point where I just knew that I was, and then I just was afraid to tell anyone about it or bring it up to anyone.

Dr. Gwynette: Sure. There’s all kinds of reasons. I mean first of all, it’s private information, but also maybe there’s a lot of anxiety about telling people, and maybe embarrassment or shame. Then, also, like you said, “Well, if I have autism, then I can’t do X, Y, and Z in the future. If I tell myself I don’t, maybe I can still do all those things.” This is very natural. Was there an experience you had, I think you mentioned a concert one day where you were at a concert with people and you realized in terms of being around people and crowds and noise that you were like a fish out of water. Was there one experience you had with that, or am I making that up?

Ben: I would say there were probably quite a few experiences like that. Because I have a big issue with being in crowds just in general, or being even in a room with more than three or four people. If it’s people that I know, it’s easier, but if it’s people I don’t know it becomes more difficult.

Ben: Because I lived in the Boston, Massachusetts, area, before I moved to Charleston for work. I just remember one instance where I went to an outdoor brewery. It was like a brewery and they were having an event that was under these large tents. It was people from work that I went with. During this it was like a bunch of people packed in very close together, and there was hardly any room to walk. I just basically had pretty much a full panic attack.

Ben: I know that I always tried to avoid those types of situations when I was younger. I always would try to avoid being in places where there would be a lot of people, like a lot of crowds. I guess that was just a time where I wasn’t expecting it to be that way. I didn’t know what I was getting myself into. Then I was stuck in this tent. I had taken a bus there with other people. I was afraid.

Dr. Gwynette: You’re stuck.

Ben: I was stuck there.

Dr. Gwynette: That’s not a great feeling. It was the noise level, and also the people just being crunched in like sardines a little bit.

Ben: Yeah, and having to stand there and not feel like I can’t go anywhere else.

Dr. Gwynette: Being trapped. That just caused a lot of anxiety.

Ben: Yeah. I remember people were trying to talk to me, and I was barely able to respond. I wasn’t able to have a conversation at that point, so I probably looked very strange to everyone. I think it was very noticeable that I was having some issues.

Dr. Gwynette: You felt it was noticeable on the inside. Probably people didn’t really realize as much as you experienced. That’s hard, because if social scenes like loud places, parties, gatherings, concerts, restaurants, if those aren’t your strong suit, it can be very isolating. Do you remember that one moment when you got diagnosed, how did it play out in your mind when somebody said, “Hey, this is what’s going on”? Was it difficult?

Ben: Well, I already knew. I was 100% sure deep down that I was autistic, I think, by the time that I finally came and made the appointments. I was sure within myself at that point. There really wasn’t a moment where somebody told me I was autistic, because I had to come to the realization myself. Maybe it’s not that unique.

Dr. Gwynette: It’s very unique.

Ben: When you know you’re autistic, you just know. There’s nothing that can change your mind. If somebody tries to tell you, “You’re not autistic,” you know that you are. When you start putting the pieces together, if you haven’t been diagnosed and you start thinking back on your life, and you start reading, even if you go [inaudible 00:23:49] start reading some articles online, and doing a little bit of research, you just know.

Ben: When you can come up with 100 examples of things, hundreds of examples which I could, then you know that’s the only explanation.

Dr. Gwynette: I think that’s one of your super powers is being able to, like you, Ben, have the ability to look inward and observe yourself, and describe your own experience. Because as a population, individuals with autism they struggle to see themselves, as a population. They often time aren’t the best reporters of how they’re doing.

Ben: It’s interesting, because I would say that I probably have developed being able to do that as an adult, as an older adult. I think that 10 years ago, I wouldn’t be having the same conversation, because at that point I wasn’t in the process of understanding that I had autism when I was in my early 20s. I didn’t understand myself at that age. It’s only now after all these experiences I’ve had and struggles and things that I’ve been through.

Ben: People with autism grow up and change and mature just like everyone else, just in different ways. We all change. I’m not the same person I was 10 years ago, just like any other 35 year old isn’t the same person they were when they were 25. I think this ability to understand myself and be able to see myself from the outside looking inwards is something that I’ve only developed in recent years.

Dr. Gwynette: Your willingness to share your story and to be so brave has touched, I can tell you, so many lives. Because you came, I guess, probably about a year ago now that you came to the Autism News NetWORK to be interviewed by a group of individuals with autism. What was it like being on the set with the Autism News NetWORK crew?

Ben: Well, it was really great, because I don’t really get to be around people that are openly autistic. I might be on a bus one day with two or three people that are autistic and not know it, because we’re just sitting there going about our daily routines. In my day-to-day activity going to work, coming home, I don’t meet, I don’t interact with anyone who’s autistic. This was actually the first time I’d ever interacted with anyone that was like, “I’m autistic,” that was known.

Dr. Gwynette: Openly.

Ben: We’re all sitting in a room together.

Dr. Gwynette: Wow.

Ben: That was the first time ever for me, and I was 34 years old. I just feel I’ve been able to accept myself for who I am, in the past couple of years, and just be able to accept that this is how I am. I like to spend most of my time alone. It’s very unusual compared to the population, but that’s who I am. I can’t change that I feel safe and at peace when I’m alone and everything is in its right place, and there’s no disorder, and not feeling anxiety.

Ben: Just being in the room with other people who are autistic and seeing how similar I am to them, and we’re all different but we all have so many similarities. I feel like I have more in common with anybody who’s on the spectrum. I feel like I have a lot in common with everyone that’s on the spectrum compared to someone who isn’t. I just felt so much better. Self-esteem and things were improved after that.

Dr. Gwynette: Absolutely. It was so impactful. I think all of us felt, and for our audience listening, if you have autism and you’re listening to this, or if you love someone who has autism and you’re listening to this, I want you to know that if Ben can do it, you can do it. That’s what I see and what I feel when I talk to you, Ben, because you just touch lives and you inspire people through your every day experiences, and sharing those. It’s a really cool thing. You can see Ben’s video up on our Autism News NetWORK page, which is at theautismnewsnetwork.com. He did a couple of interviews with us. I remember one of the topics we touched on during your interview was your work. Tell us about what you do?

Ben: I work in a research lab here at MUSC. I’m the lab manager in the lab.

Dr. Gwynette: Want to give a shout-out?

Ben: A shout-out?

Dr. Gwynette: Yeah. Shout-out to Doctor Cowan’s lab.

Ben: Yes. I have a lot of different responsibilities. Our research lab, one of the topics, we actually study autism in the lab. When I first started working in the lab, we weren’t studying autism. I’ve worked in this lab for I think about 10 years now. It’s interesting that I happen to be an autistic person who’s working in this lab, because it’s almost a coincidence, I would say.

Ben: Because when I first started working in the lab, we weren’t even studying that. As far as my actual job, there’s so many different things I do. Take a while to explain everything. I do get to work with research animals. I get to work with mice and rats. I enjoy that. I’m a big animal lover, and I think that mice and rats are awesome.

Dr. Gwynette: They are.

Ben: They’re a lot more friendly than people realize, until you worked with them.

Dr. Gwynette: Is that right?

Ben: Yeah. I think especially mice. I think that people are afraid they’re going to get bit by mice. They’re super, super-sweet animals, 99% of them.

Dr. Gwynette: You guys are doing is it behavioral research, or is it genetic research or a combination?

Ben: Yeah. We do both. We do a lot of behavioral research. We an entire suite of different rooms where we test different behaviors. We have mazes that we could test the mice in. We test for locomotor activity, see how active they are. We test for anxiety. We have anxiety tests. We have fear tests, things like that. Then we also do stuff on the cellular, molecular level, like studying tissues and things like that as well.

Dr. Gwynette: You guess also test mice in a social situation, like a cage or something.

Ben: We do. We have a social interaction test to test how they’re interacting with other mice. It’s like a whole set up that we have for that. One of the genes that we’re studying is directly related to autism. When we study those mice that have the gene that’s related to it, it’s called MEF2C, it’s directly related to a form of autism, we actually see some of those behaviors that you see in the human patients that have the disease, you see in the mice. It’s not the exact same, but there’s a lot of the same types of behaviors.

Dr. Gwynette: In terms of understanding autism on a genetic level, on a cellular level, we work with animals, and the ultimate goal is to, of course, bring new treatments to humans.

Ben: Mm-hmm (affirmative). That’s the ultimate goal.

Dr. Gwynette: You work with a group of humans who are all super-smart and really effective. You’ve had to educate them on the actual autism condition and what it’s like. How did you do that?

Ben: Well, actually I think the way that I was really able, the best thing that I was able to do was actually when I did the interview with the Autism News NetWORK. I shared it with everyone that I work with. I think everyone knew at that point, because I had come out. I had mentioned it to everyone before that. That was a way for me to share it in a way that was natural. This seemed natural, like, “Here’s a video that you can go watch where I’m sitting there talking about my …” It’s just a very easy and natural way for me to share it with everyone. It made it very easy for me to. I’m really thankful for the Autism News NetWORK for giving me that option.

Ben: I also shared it with my family, which I had never talked. I had maybe once or twice talked to my mom and sister about it. I shared the video with them a little bit. I actually waited a while to share it with them, but I eventually did share the video with them, and they watched it.

Dr. Gwynette: What did they say about it?

Ben: They had really good things to say, and I felt like for the first time my mom and my sister really understood who I was. Because growing up, I had so much trouble with everything. It was just a constant like, “What is going on? What’s wrong with him? Why is everything a disaster?” I feel like now they understand who I am actually. I think they went and did some reading, and read some things about [crosstalk 00:35:31].

Dr. Gwynette: Not only who you are, but also what a struggle it was, and also that you’re doing an A-plus job of battling through all the challenges. I think a lot of people from afar would be like, “Hey, what’s wrong?” Well, a lot of things are right, but they don’t make the news or the headlines. It’s all we can see is, “Hey, why isn’t he playing sports? Why is he depressed?” I think we see a lot of patients who are doing amazing, but by the world’s standards they’re not “measuring up.”

Ben: One thing that makes me feel really happy is knowing that things are a lot different now for young children growing up that are similar to me. I think that almost all of them are going to have a much better experience, and they’re going to be diagnosed. They’re going to probably be put into programs. I think their school’s going to know about it.

Dr. Gwynette: Support.

Ben: Supports at their school. I had none of that, and it was horrible. I wouldn’t wish that on anyone.

Dr. Gwynette: You’re doing a great job at raising awareness as we speak, because we’re going to share this. I know it’s going to inspire people. It’s amazing. In terms of the future, what do you see for yourself going forward?

Ben: Well, I like things to stay the same.

Dr. Gwynette: Change is not your friend.

Ben: I don’t like change. If I could have it any way, I would have everything just be the exact same as it is right now. I like working in this lab. I do like the job. I plan to just continue doing this and just doing what I’m doing now. It would be really great if at some point in my life there was some type of advancement or improvement with how people with autism are functioning in society. I just wish there was a way for us to find jobs that are well suited for us and our abilities, and for people to see our good qualities during an interview.

Ben: Because I can tell you, because right now one of the biggest issues is just a lot of the qualities that employers are looking for in a job interview are things that you don’t see on the outside in somebody like myself. If I go in for a job interview, most of the things they’re looking for I’m not going to have, like charisma, being outgoing. I do consider myself to be a very friendly and nice person.

Dr. Gwynette: Yes. You are.

Ben: I can tell people that, but are they going to be able to see that during a job interview? I wish there was a system in place or something like that. If something like that could happen sometime in my life, that would make me really happy. I know it’s probably not going to happen tomorrow.

Dr. Gwynette: I remember in your workplace, you just mentioned change, and it makes me laugh but not really, but these summer interns come in on academic campuses. For you, it’s good to have the extra help, but then also it’s definitely an adjustment.

Ben: Yeah. It is. I’ve actually developed a strategy that’s just really helped me with those types of things. I would actually give this advice to any autistic person who’s going into a job, if you’re starting a new job or even if you’re at a job that you’ve already at. This is something that took me a while, such a long time to learn, and it’s a skill to develop. Just always be positive and friendly to everyone that you work with.

Ben: Emails especially is where you can really make a difference. If you’re at a job where you send emails to people, if you always try to sound very nice and positive. I even use emojis and things in my emails now. Then people tend to respond in a positive way to you. I’ve found that it’s helped me to avoid having difficult interactions with people when I’m just always making an effort to be nice and friendly. It’s not an easy thing to do. It takes practice, and you have to force yourself to do it.

Dr. Gwynette: It’s like put an exclamation mark at the end of a sentence to show enthusiasm.

Ben: Yes. I use a lot of exclamation marks. I use emojis. At first when I started doing it, it was very awkward. I wouldn’t say that’s my natural personality. When you force yourself to do it, it becomes you when you do it, when you make yourself do it.

Dr. Gwynette: That right there is growth and development. Like you mentioned earlier that you’re constantly growing. Then I don’t know if you’d be willing to share with the audience, I think you’ve received some support at work. You’re doing your job and you’re doing your job really well, but there is some support that you asked for. Can you tell us about that?

Ben: One of the things is that it’s really important for me to have a quiet place where I can focus. That’s one of the changes that I needed to request at one point in the last couple of years. I was having trouble focusing on work because if people were talking around me, my brain, it was like it would just stop working. I couldn’t focus on anything. It was a very frustrating experience to feel like I had work I needed to do, and I just couldn’t do it.

Ben: Noise for me is a big issue. Also, it’s hard for me to have people sitting close to me. I feel like I need personal space as well. That was a thing that really helped me. That was a change that was made. Another thing that’s important for me is just having a person at my job that I can come and talk to if I’m having any sort of issue with any type of interactions. I’ve had that over the past couple of years.

Dr. Gwynette: That’s awesome.

Ben: I’ve had someone I can go and say, “This person came and asked me this. What do I do? How should I handle this? Can you talk to them for me?” Sometimes this person might talk to the person for me and help. I think that’s really important is being able to have somebody to talk to. Being open about the fact that you’re autistic when you’re at a job, I’m realizing, for me is pretty much crucial. Because it just doesn’t really work.

Dr. Gwynette: You can’t get help if you don’t ask for it.

Ben: People don’t understand you. People don’t understand why you are the way you are, if you don’t come out and say that you’re autistic.

Dr. Gwynette: You’re doing the work. It’s just we all need support. Everyone needs support. We had a young man on here a couple of weeks ago, Patrick, who got his Eagle Scout. He had some support, but he got the Eagle Scout and he did all the work. He just needed a little bit of support. I think it’s hard. As human beings we struggle, all of us struggle to ask for help. I give you props for that, and takes a lot of heart to do that.

Ben: Thank you.

Dr. Gwynette: I’m glad it was well received. The person is very encouraging and supportive.

Ben: Yes.

Dr. Gwynette: That’s huge. That’s great. Did you do a little talk to your co-workers at one point?

Ben: Yes. We have several people in our lab. We have several areas of research in our lab, and we have a few people who are focused on studying autism, and then one of the researchers in our lab was doing a presentation related to our autism research from the lab. I emailed her and my boss and asked if I could share a story before her presentation that’s related to my autism. It specifically was about the issues that I have with noise and sounds, and sensory issues, and things like that.

Ben: Actually, the story I shared was how I deal with noise at my apartment where I live, in my personal life. I shared that story, and I was very nervous. My voice was super-shaky for the first, probably, well, the entire time. It was extremely bad for about five minutes. I could barely talk. There was actually a pretty large number of people in the room when I was sharing that story. There was probably 15 to 20 people in the room.

Dr. Gwynette: Wow.

Ben: It was scary. Being able to share that story was good. Because then when a researcher is sharing their autism research, then it’s very open and out in the open that I’m a person with autism who’s sitting there in the room with everyone and watching this presentation. I’m autistic and I’m sitting here, and watching it just with everyone else.

Dr. Gwynette: That’s right. I think it really hits home, and that’s just a wonderful illustration. It really does touch people and inspires them to do the great work that they do. Cool. Any other topics that you want to hit today? I know I’ve taken a lot of your time.

Ben: Nothing’s coming up immediately.

Dr. Gwynette: This has been the Autism News NetWORK Podcast. We thank you for joining us. Ben, thank you so much for being here.

Ben: Thank you Doctor Gwynette.

Dr. Gwynette: Ben from the Medical University of South Carolina. This has been a great time talking to you. We need to do this again.

Ben: Yes.

Dr. Gwynette: Absolutely. There’s lots to talk about. You can follow me @DrGwynette, D-R G-W-Y-N-E-T-T-E on Twitter and Instagram. Please check out our website, theautismnewsnetwork.com, where you can see lots of great content, not only first-person interviews and videos, but also some guest speakers as well. We interview experts in the field of autism. We update our content all the time. We hope that you’ll join us again on a future Autism News NetWORK Podcast. Have a great day.

Dr. Gwynette: Hello and welcome to the Autism News NetWORK Podcast. My name is Doctor Frampton Gwynette. I am a psychiatrist at the Medical University of South Carolina. You can follow me on Twitter @DrGwynette, that’s D-R G-W-Y-N-E-T-T-E, and Instagram with the same name. I am joined today by a very special guest named Ben, who is here with us today. Hey Ben.

Ben: Hi Doctor Gwynette. Thank you for having me.

Dr. Gwynette: Thanks for being here. We’ve been working up to this for a while, because we are just so excited to hear all the great stuff you’re going to talk about today. Can’t thank you enough for doing it on a very rainy and soggy day in Charleston, huh?

Ben: Yes. Totally.

Dr. Gwynette: We were talking just before the air about some of your family history. Where are you from originally?

Ben: I’m originally from Dallas, Texas.

Dr. Gwynette: Dallas, Texas. For those of you who aren’t aware, Ben was diagnosed with autism earlier in life. When you were growing up in Dallas, were you aware that you had autism?

Ben: Actually, I was born in 1984, so actually I was not diagnosed until I think it was a couple of years ago, officially diagnosed. Growing up in the 80s, no, I was not. I had so many unusual habits and mannerisms that my parents noticed, my teachers noticed, and there was no explanation at that time. When I went into preschool, I started preschool when I was three years old, so this would have been ’86/’87. My teachers noticed that I was different from everyone else in very noticeable ways.

Ben: For example, they would hand out a sheet for us to color. They’d give us a 30 minute session to color a page. All the other kids would just color everything in really fast with the crayons.

Dr. Gwynette: Scribbled in.

Ben: Yeah. They’d use different colors and stuff, but I would sit there and do each little section and try to make it perfect. By the time the 30 minutes ran up, I would only have about 10% of the picture colored in, and everyone else would have the whole thing. My teacher actually complained to my parents saying that I needed to go faster, because I’m turning in a picture that has … If it’s a person, it’ll be their right arm is colored in and that’s it, or something. I couldn’t stand being outside the lines.

Dr. Gwynette: You were very meticulous and really preoccupied.

Ben: Yeah. Another thing is that, I mean there’s a lot of examples I could give. Another thing is I remember we had a small library at this preschool I went to. It was actually at a private school. I remember they told us we could check a book out. I picked out a history book that was for, I think, first grader. It went all the way up to elementary school, so I wanted to check out the history book, even though I didn’t know how to read.

Dr. Gwynette: It wasn’t Doctor Seuss or some other kid’s book. You were picking out a book for …

Ben: Yeah. It’s not that I didn’t like Doctor Seuss or anything. I had those books up to that age, but I wanted to go through and look at the pictures. It had a lot of Native American history, the book that I picked, and I was looking at the pictures of them hunting buffalo and stuff, and pretending like I could read even though I couldn’t, looking at the words, and just going through and looking at the letters even though I couldn’t actually read. I was pretending I could read, because it excited me, the idea of being able to read. My teachers thought that was really strange that I was sitting there with this book and trying to read, or something.

Dr. Gwynette: Your interests were different than other kids right from the start.

Ben: Yes. Also, I started getting bulled almost immediately, starting in preschool. It was like I didn’t even realize I was being bullied. I remember, a really specific story is there were these actually, I think it was two kids, two other kids. We would have recess outside. I would play with these two kids, and I remember their names, but I’m not going to say their real names. I’ll just … Yeah.

Dr. Gwynette: We’ll protect [inaudible 00:05:11].

Ben: We would play during recess. We were three or four years old, so very young. We would be running around in circles, just that kind of playing. Not playing like an actual sport or on a swing set. We would just be goofing around type of playing. They would be pushing me down on the ground and laughing. This would be every day. I thought that was us playing. I thought that was normal, but they were ganging up on me. I would stand up. I would get up again and then they would run around me and push me down again. It was every day.

Ben: I remember not understanding that there was anything wrong with that, and they were laughing me. Then after preschool when my dad would pick me up a lot of the time, and he would ask me what I did. He usually would ask me who I played with. I would tell him, “I played with these two kids.” That’s all I would say. I wouldn’t say, “They kept pushing me to the ground and laughing.” I wouldn’t say that. I would just say I played with so and so.

Dr. Gwynette: The teachers weren’t really picking up on what was [crosstalk 00:06:42].

Ben: No. I don’t remember them ever noticing or caring. They weren’t punching me with their fists, but they were pushing me around and pushing me to the ground and stuff.

Dr. Gwynette: Even then there were signs. That’s really hurtful to go through that, and all these years you can still remember what happened.

Ben: Yeah. I remember it really clearly.

Dr. Gwynette: Were you sad at that point about it?

Ben: No. At that point I didn’t even understand what was going on. I would say probably as I got a little bit older, I would understand that I was being bullied. Maybe when I was five or six. At three or four years old, I didn’t understand that that’s what was happening.

Dr. Gwynette: How did you do in elementary school and middle school?

Ben: Really badly. Really badly. Well, I started out in private school, because I went to the preschool and I continued. This was like a private religious type school. There was some of that. There was prayer. We would say prayers in the morning, and things like that before class. It was that type of private school. The kids that went to that school, a lot of them had wealthier families, maybe not even necessarily super-wealthy or anything.

Ben: I guess let me just skip ahead, because I eventually went to public school. I do think the bullying at public school was much worse than when I went to private school. I know that’s skipping ahead. Because at the private school, even though I was teased and made fun of and stuff, I do remember kids making an effort at times to try to be nice to me, not all the time. It depended on who it was. There were some kids that were just mean spirited, and then there were other kids that tried not to be mean. I could remember.

Ben: During recess, everyone was playing football because it was Texas and football’s really big in Texas. I was terrible. Quickly realized I was terrible at sports, and all the kids were on sports teams, so I joined the teams because everyone did it. I was so bad at it. It was horrible.

Dr. Gwynette: You found yourself, it sounds like, being excluded a lot.

Ben: I was excluded a lot. Unless it was something where the entire class was being invited, like for a birthday party, I usually wouldn’t be invited unless it was the entire class or something.

Dr. Gwynette: Growing up did you have a lot of sleepovers or get togethers with friends, or was it kind of lonely?

Ben: Yeah. When I was at the private school, I did have some sleepovers, but my parents would set up with the other parents. I remember a couple of them were okay, but I remember this one kid. All I wanted to do, I wanted to play video games with him. This would have been back in the early 90s.

Dr. Gwynette: Early 90s.

Ben: There were some other kids in our class that lived nearby that were within walking distance, and he wanted to walk over there and play football with them. I didn’t want to, so he got mad at me. I remember that. He was sleeping over. He didn’t want to do what I wanted to do.

Dr. Gwynette: That’s hard, because you find yourself even at your own sleepover being excluded.

Ben: I had no interest in sports. I hated it. I’ve never liked playing sports.

Dr. Gwynette: I think people don’t realize that sports or other activities can be such a big part of how we socialize and make friends. I use an example that I recently got together with some high school friends. I’ve been out of high school for almost 30 years now. When I got together with some friends to go to a concert last summer in Chicago, as I was flying home I realized that we had all played baseball together. Even though I haven’t played baseball in 30 years, the reason that we became friends was partly because we played baseball. Thinking, like you said, if you’re not part of the sports teams or other activities, the friends just don’t come.

Ben: The thing is, is that I was on the teams at least when I was in private school, because pretty much every single boy was on the team at this private school. I was awful at the sports, so it was just a miserable experience. I would always get sit. I would just be either sitting on the bench or playing a position where I would just be standing there the whole time, or not actually doing anything with the ball, or actually contributing.

Ben: I remember one kid at one point telling me that his parent, like during a basketball game, his parents were laughing at me because during the game I wasn’t able to keep up with running. Because you know in basketball you have to switch sides of the court, the back and forth. I was not able to keep up with the running back and forth. I was going really slow. He told me his parents were laughing at me during the game.

Dr. Gwynette: Did those types of experience, I mean I [inaudible 00:13:01] put my psychiatrist hat on, but did those make you sad at the time?

Ben: There’s a part of me that wishes I could have stood up for myself a little bit more. Because I never really stood up for myself too much. If I could go back, I would just say, “I’m not playing sports. I’m sorry, but I don’t care if all the other kids are doing it.” That’s what I wish. At the time, I didn’t do that. I didn’t want to be the only kid in the school not on the sports teams.

Dr. Gwynette: Exactly. You’re trying to participate and be social. It sounds like that was a tough road. Then you get through. How was high school?

Ben: Well, I went to a military academy. I went to two different schools. I started in eighth grade, and went to a military school in Missouri for eighth and ninth grade. Then I transferred to a different school in Indiana from tenth to twelfth grade.

Dr. Gwynette: Why’d you go to military school?

Ben: I was in public school at that point, and the last year I did that was seventh grade. That’s the year where I started to have pretty severe depression. I started losing motivation. Up until seventh grade I was doing my homework. I was trying to do well in my classes, even though I was having trouble with bullying. Because I switched to public school in fifth grade, so fifth and sixth grade I was also in public school. I was having trouble with bullying and things like that, being picked on, but I was still participating in classes.

Ben: In seventh grade, the bullying I would say actually got a little bit better in seventh grade. It was like a junior high, so I was able to disappear more and not be noticed as much.

Dr. Gwynette: Sure. Like safety in numbers.

Ben: Yeah. I was able to just really be quiet and not be noticed as much. I started to suffer from pretty severe depression, and my parents actually had me going to see a psychologist at that age. I was about 12 or 13 years old. It just continued to get worse. I wasn’t doing my homework. During my tests I was just filling in answers, just randomly, didn’t even care. Barely passing some of my classes or not passing them at all. That was probably the main reason why. I believe I was diagnosed with depression, like bipolar depression.

Dr. Gwynette: At that point you’re depressed but no one had really recognized the autism yet.

Ben: No.

Dr. Gwynette: Looking back, do you feel like there was a connection between autism and depression for you?

Ben: Absolutely. Absolutely. I feel like if I was growing up now, it would have been extremely obvious that that was what it was. At that time, this would have been around 1997, there was not any discussion about that as being a possibility.

Dr. Gwynette: I think part of it, too, is the audience can’t see you, but from the outside no one would ever realize that you have autism. It’s really going on behind the scenes. You’re smart and you speak well. There are many stories that I hear in my practice of people falling through the cracks or slipping past the radar. Then they wake up one day in adulthood and realize or are told that they have autism. Looking back it explains a lot.

Ben: Yeah. For me it was actually a very slow process of realizing it myself before I was officially diagnosed a couple of years ago. I would say I began to start thinking about it when I was in my early to mid 20s. I’m about 35 right now, so I would say in my early to mid 20s is when I started to think about it. I think that I was in denial about it as well.

Ben: I was afraid of what it would mean. At one point I wanted to go to medical school, and I wanted to do things like that. I didn’t know what, you know facing up to it. It got to a point where I just knew that I was, and then I just was afraid to tell anyone about it or bring it up to anyone.

Dr. Gwynette: Sure. There’s all kinds of reasons. I mean first of all, it’s private information, but also maybe there’s a lot of anxiety about telling people, and maybe embarrassment or shame. Then, also, like you said, “Well, if I have autism, then I can’t do X, Y, and Z in the future. If I tell myself I don’t, maybe I can still do all those things.” This is very natural. Was there an experience you had, I think you mentioned a concert one day where you were at a concert with people and you realized in terms of being around people and crowds and noise that you were like a fish out of water. Was there one experience you had with that, or am I making that up?

Ben: I would say there were probably quite a few experiences like that. Because I have a big issue with being in crowds just in general, or being even in a room with more than three or four people. If it’s people that I know, it’s easier, but if it’s people I don’t know it becomes more difficult.

Ben: Because I lived in the Boston, Massachusetts, area, before I moved to Charleston for work. I just remember one instance where I went to an outdoor brewery. It was like a brewery and they were having an event that was under these large tents. It was people from work that I went with. During this it was like a bunch of people packed in very close together, and there was hardly any room to walk. I just basically had pretty much a full panic attack.

Ben: I know that I always tried to avoid those types of situations when I was younger. I always would try to avoid being in places where there would be a lot of people, like a lot of crowds. I guess that was just a time where I wasn’t expecting it to be that way. I didn’t know what I was getting myself into. Then I was stuck in this tent. I had taken a bus there with other people. I was afraid.

Dr. Gwynette: You’re stuck.

Ben: I was stuck there.

Dr. Gwynette: That’s not a great feeling. It was the noise level, and also the people just being crunched in like sardines a little bit.

Ben: Yeah, and having to stand there and not feel like I can’t go anywhere else.

Dr. Gwynette: Being trapped. That just caused a lot of anxiety.

Ben: Yeah. I remember people were trying to talk to me, and I was barely able to respond. I wasn’t able to have a conversation at that point, so I probably looked very strange to everyone. I think it was very noticeable that I was having some issues.

Dr. Gwynette: You felt it was noticeable on the inside. Probably people didn’t really realize as much as you experienced. That’s hard, because if social scenes like loud places, parties, gatherings, concerts, restaurants, if those aren’t your strong suit, it can be very isolating. Do you remember that one moment when you got diagnosed, how did it play out in your mind when somebody said, “Hey, this is what’s going on”? Was it difficult?

Ben: Well, I already knew. I was 100% sure deep down that I was autistic, I think, by the time that I finally came and made the appointments. I was sure within myself at that point. There really wasn’t a moment where somebody told me I was autistic, because I had to come to the realization myself. Maybe it’s not that unique.

Dr. Gwynette: It’s very unique.

Ben: When you know you’re autistic, you just know. There’s nothing that can change your mind. If somebody tries to tell you, “You’re not autistic,” you know that you are. When you start putting the pieces together, if you haven’t been diagnosed and you start thinking back on your life, and you start reading, even if you go [inaudible 00:23:49] start reading some articles online, and doing a little bit of research, you just know.

Ben: When you can come up with 100 examples of things, hundreds of examples which I could, then you know that’s the only explanation.

Dr. Gwynette: I think that’s one of your super powers is being able to, like you, Ben, have the ability to look inward and observe yourself, and describe your own experience. Because as a population, individuals with autism they struggle to see themselves, as a population. They often time aren’t the best reporters of how they’re doing.

Ben: It’s interesting, because I would say that I probably have developed being able to do that as an adult, as an older adult. I think that 10 years ago, I wouldn’t be having the same conversation, because at that point I wasn’t in the process of understanding that I had autism when I was in my early 20s. I didn’t understand myself at that age. It’s only now after all these experiences I’ve had and struggles and things that I’ve been through.

Ben: People with autism grow up and change and mature just like everyone else, just in different ways. We all change. I’m not the same person I was 10 years ago, just like any other 35 year old isn’t the same person they were when they were 25. I think this ability to understand myself and be able to see myself from the outside looking inwards is something that I’ve only developed in recent years.

Dr. Gwynette: Your willingness to share your story and to be so brave has touched, I can tell you, so many lives. Because you came, I guess, probably about a year ago now that you came to the Autism News NetWORK to be interviewed by a group of individuals with autism. What was it like being on the set with the Autism News NetWORK crew?

Ben: Well, it was really great, because I don’t really get to be around people that are openly autistic. I might be on a bus one day with two or three people that are autistic and not know it, because we’re just sitting there going about our daily routines. In my day-to-day activity going to work, coming home, I don’t meet, I don’t interact with anyone who’s autistic. This was actually the first time I’d ever interacted with anyone that was like, “I’m autistic,” that was known.

Dr. Gwynette: Openly.

Ben: We’re all sitting in a room together.

Dr. Gwynette: Wow.

Ben: That was the first time ever for me, and I was 34 years old. I just feel I’ve been able to accept myself for who I am, in the past couple of years, and just be able to accept that this is how I am. I like to spend most of my time alone. It’s very unusual compared to the population, but that’s who I am. I can’t change that I feel safe and at peace when I’m alone and everything is in its right place, and there’s no disorder, and not feeling anxiety.

Ben: Just being in the room with other people who are autistic and seeing how similar I am to them, and we’re all different but we all have so many similarities. I feel like I have more in common with anybody who’s on the spectrum. I feel like I have a lot in common with everyone that’s on the spectrum compared to someone who isn’t. I just felt so much better. Self-esteem and things were improved after that.

Dr. Gwynette: Absolutely. It was so impactful. I think all of us felt, and for our audience listening, if you have autism and you’re listening to this, or if you love someone who has autism and you’re listening to this, I want you to know that if Ben can do it, you can do it. That’s what I see and what I feel when I talk to you, Ben, because you just touch lives and you inspire people through your every day experiences, and sharing those. It’s a really cool thing. You can see Ben’s video up on our Autism News NetWORK page, which is at theautismnewsnetwork.com. He did a couple of interviews with us. I remember one of the topics we touched on during your interview was your work. Tell us about what you do?

Ben: I work in a research lab here at MUSC. I’m the lab manager in the lab.

Dr. Gwynette: Want to give a shout-out?

Ben: A shout-out?

Dr. Gwynette: Yeah. Shout-out to Doctor Cowan’s lab.

Ben: Yes. I have a lot of different responsibilities. Our research lab, one of the topics, we actually study autism in the lab. When I first started working in the lab, we weren’t studying autism. I’ve worked in this lab for I think about 10 years now. It’s interesting that I happen to be an autistic person who’s working in this lab, because it’s almost a coincidence, I would say.

Ben: Because when I first started working in the lab, we weren’t even studying that. As far as my actual job, there’s so many different things I do. Take a while to explain everything. I do get to work with research animals. I get to work with mice and rats. I enjoy that. I’m a big animal lover, and I think that mice and rats are awesome.

Dr. Gwynette: They are.

Ben: They’re a lot more friendly than people realize, until you worked with them.

Dr. Gwynette: Is that right?

Ben: Yeah. I think especially mice. I think that people are afraid they’re going to get bit by mice. They’re super, super-sweet animals, 99% of them.

Dr. Gwynette: You guys are doing is it behavioral research, or is it genetic research or a combination?

Ben: Yeah. We do both. We do a lot of behavioral research. We an entire suite of different rooms where we test different behaviors. We have mazes that we could test the mice in. We test for locomotor activity, see how active they are. We test for anxiety. We have anxiety tests. We have fear tests, things like that. Then we also do stuff on the cellular, molecular level, like studying tissues and things like that as well.

Dr. Gwynette: You guess also test mice in a social situation, like a cage or something.

Ben: We do. We have a social interaction test to test how they’re interacting with other mice. It’s like a whole set up that we have for that. One of the genes that we’re studying is directly related to autism. When we study those mice that have the gene that’s related to it, it’s called MEF2C, it’s directly related to a form of autism, we actually see some of those behaviors that you see in the human patients that have the disease, you see in the mice. It’s not the exact same, but there’s a lot of the same types of behaviors.

Dr. Gwynette: In terms of understanding autism on a genetic level, on a cellular level, we work with animals, and the ultimate goal is to, of course, bring new treatments to humans.

Ben: Mm-hmm (affirmative). That’s the ultimate goal.

Dr. Gwynette: You work with a group of humans who are all super-smart and really effective. You’ve had to educate them on the actual autism condition and what it’s like. How did you do that?

Ben: Well, actually I think the way that I was really able, the best thing that I was able to do was actually when I did the interview with the Autism News NetWORK. I shared it with everyone that I work with. I think everyone knew at that point, because I had come out. I had mentioned it to everyone before that. That was a way for me to share it in a way that was natural. This seemed natural, like, “Here’s a video that you can go watch where I’m sitting there talking about my …” It’s just a very easy and natural way for me to share it with everyone. It made it very easy for me to. I’m really thankful for the Autism News NetWORK for giving me that option.

Ben: I also shared it with my family, which I had never talked. I had maybe once or twice talked to my mom and sister about it. I shared the video with them a little bit. I actually waited a while to share it with them, but I eventually did share the video with them, and they watched it.

Dr. Gwynette: What did they say about it?

Ben: They had really good things to say, and I felt like for the first time my mom and my sister really understood who I was. Because growing up, I had so much trouble with everything. It was just a constant like, “What is going on? What’s wrong with him? Why is everything a disaster?” I feel like now they understand who I am actually. I think they went and did some reading, and read some things about [crosstalk 00:35:31].

Dr. Gwynette: Not only who you are, but also what a struggle it was, and also that you’re doing an A-plus job of battling through all the challenges. I think a lot of people from afar would be like, “Hey, what’s wrong?” Well, a lot of things are right, but they don’t make the news or the headlines. It’s all we can see is, “Hey, why isn’t he playing sports? Why is he depressed?” I think we see a lot of patients who are doing amazing, but by the world’s standards they’re not “measuring up.”

Ben: One thing that makes me feel really happy is knowing that things are a lot different now for young children growing up that are similar to me. I think that almost all of them are going to have a much better experience, and they’re going to be diagnosed. They’re going to probably be put into programs. I think their school’s going to know about it.

Dr. Gwynette: Support.

Ben: Supports at their school. I had none of that, and it was horrible. I wouldn’t wish that on anyone.

Dr. Gwynette: You’re doing a great job at raising awareness as we speak, because we’re going to share this. I know it’s going to inspire people. It’s amazing. In terms of the future, what do you see for yourself going forward?

Ben: Well, I like things to stay the same.

Dr. Gwynette: Change is not your friend.

Ben: I don’t like change. If I could have it any way, I would have everything just be the exact same as it is right now. I like working in this lab. I do like the job. I plan to just continue doing this and just doing what I’m doing now. It would be really great if at some point in my life there was some type of advancement or improvement with how people with autism are functioning in society. I just wish there was a way for us to find jobs that are well suited for us and our abilities, and for people to see our good qualities during an interview.

Ben: Because I can tell you, because right now one of the biggest issues is just a lot of the qualities that employers are looking for in a job interview are things that you don’t see on the outside in somebody like myself. If I go in for a job interview, most of the things they’re looking for I’m not going to have, like charisma, being outgoing. I do consider myself to be a very friendly and nice person.

Dr. Gwynette: Yes. You are.

Ben: I can tell people that, but are they going to be able to see that during a job interview? I wish there was a system in place or something like that. If something like that could happen sometime in my life, that would make me really happy. I know it’s probably not going to happen tomorrow.

Dr. Gwynette: I remember in your workplace, you just mentioned change, and it makes me laugh but not really, but these summer interns come in on academic campuses. For you, it’s good to have the extra help, but then also it’s definitely an adjustment.

Ben: Yeah. It is. I’ve actually developed a strategy that’s just really helped me with those types of things. I would actually give this advice to any autistic person who’s going into a job, if you’re starting a new job or even if you’re at a job that you’ve already at. This is something that took me a while, such a long time to learn, and it’s a skill to develop. Just always be positive and friendly to everyone that you work with.

Ben: Emails especially is where you can really make a difference. If you’re at a job where you send emails to people, if you always try to sound very nice and positive. I even use emojis and things in my emails now. Then people tend to respond in a positive way to you. I’ve found that it’s helped me to avoid having difficult interactions with people when I’m just always making an effort to be nice and friendly. It’s not an easy thing to do. It takes practice, and you have to force yourself to do it.

Dr. Gwynette: It’s like put an exclamation mark at the end of a sentence to show enthusiasm.

Ben: Yes. I use a lot of exclamation marks. I use emojis. At first when I started doing it, it was very awkward. I wouldn’t say that’s my natural personality. When you force yourself to do it, it becomes you when you do it, when you make yourself do it.

Dr. Gwynette: That right there is growth and development. Like you mentioned earlier that you’re constantly growing. Then I don’t know if you’d be willing to share with the audience, I think you’ve received some support at work. You’re doing your job and you’re doing your job really well, but there is some support that you asked for. Can you tell us about that?

Ben: One of the things is that it’s really important for me to have a quiet place where I can focus. That’s one of the changes that I needed to request at one point in the last couple of years. I was having trouble focusing on work because if people were talking around me, my brain, it was like it would just stop working. I couldn’t focus on anything. It was a very frustrating experience to feel like I had work I needed to do, and I just couldn’t do it.

Ben: Noise for me is a big issue. Also, it’s hard for me to have people sitting close to me. I feel like I need personal space as well. That was a thing that really helped me. That was a change that was made. Another thing that’s important for me is just having a person at my job that I can come and talk to if I’m having any sort of issue with any type of interactions. I’ve had that over the past couple of years.

Dr. Gwynette: That’s awesome.

Ben: I’ve had someone I can go and say, “This person came and asked me this. What do I do? How should I handle this? Can you talk to them for me?” Sometimes this person might talk to the person for me and help. I think that’s really important is being able to have somebody to talk to. Being open about the fact that you’re autistic when you’re at a job, I’m realizing, for me is pretty much crucial. Because it just doesn’t really work.

Dr. Gwynette: You can’t get help if you don’t ask for it.

Ben: People don’t understand you. People don’t understand why you are the way you are, if you don’t come out and say that you’re autistic.

Dr. Gwynette: You’re doing the work. It’s just we all need support. Everyone needs support. We had a young man on here a couple of weeks ago, Patrick, who got his Eagle Scout. He had some support, but he got the Eagle Scout and he did all the work. He just needed a little bit of support. I think it’s hard. As human beings we struggle, all of us struggle to ask for help. I give you props for that, and takes a lot of heart to do that.

Ben: Thank you.

Dr. Gwynette: I’m glad it was well received. The person is very encouraging and supportive.

Ben: Yes.

Dr. Gwynette: That’s huge. That’s great. Did you do a little talk to your co-workers at one point?

Ben: Yes. We have several people in our lab. We have several areas of research in our lab, and we have a few people who are focused on studying autism, and then one of the researchers in our lab was doing a presentation related to our autism research from the lab. I emailed her and my boss and asked if I could share a story before her presentation that’s related to my autism. It specifically was about the issues that I have with noise and sounds, and sensory issues, and things like that.

Ben: Actually, the story I shared was how I deal with noise at my apartment where I live, in my personal life. I shared that story, and I was very nervous. My voice was super-shaky for the first, probably, well, the entire time. It was extremely bad for about five minutes. I could barely talk. There was actually a pretty large number of people in the room when I was sharing that story. There was probably 15 to 20 people in the room.

Dr. Gwynette: Wow.

Ben: It was scary. Being able to share that story was good. Because then when a researcher is sharing their autism research, then it’s very open and out in the open that I’m a person with autism who’s sitting there in the room with everyone and watching this presentation. I’m autistic and I’m sitting here, and watching it just with everyone else.

Dr. Gwynette: That’s right. I think it really hits home, and that’s just a wonderful illustration. It really does touch people and inspires them to do the great work that they do. Cool. Any other topics that you want to hit today? I know I’ve taken a lot of your time.

Ben: Nothing’s coming up immediately.

Dr. Gwynette: This has been the Autism News NetWORK Podcast. We thank you for joining us. Ben, thank you so much for being here.

Ben: Thank you Doctor Gwynette.

Dr. Gwynette: Ben from the Medical University of South Carolina. This has been a great time talking to you. We need to do this again.

Ben: Yes.

Dr. Gwynette: Absolutely. There’s lots to talk about. You can follow me @DrGwynette, D-R G-W-Y-N-E-T-T-E on Twitter and Instagram. Please check out our website, theautismnewsnetwork.com, where you can see lots of great content, not only first-person interviews and videos, but also some guest speakers as well. We interview experts in the field of autism. We update our content all the time. We hope that you’ll join us again on a future Autism News NetWORK Podcast. Have a great day.

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