Dr. Mary Barbera: You’re listening to the Turn Autism Around podcast, and today I have two guests, a mother-daughter team, Suzie and Kelly Carpenter. And Suzie Carpenter is a writer, a speaker, coach; she is the author of the bestselling memoir On The Bright Side: A Mother’s Story of Love and Healing Through Her Daughter’s Autism. Her daughter Kelly is also joining us today, and she is 23 years old at the time of this recording. Kelly has a positive outlook, and she is fully conversational. She’s dating, she’s driving, and she has a lot of great insight as a young adult on the autism spectrum.
Dr. Mary Barbera: So it is my pleasure to welcome both Suzie and Kelly Carpenter to the show. We’re going to be discussing how to tell a child that they, he or she, has autism. We’re going to discuss bullying, dating, driving, decisions to go to college, and a host of other issues. So it’s a great interview. Let’s get to it with Suzie and Kelly Carpenter.
Welcome to the Turn Autism Around podcast for both parents and professionals in the autism world who want to turn things around, be less stressed and lead happier lives. And now your host, autism mom, behavior analyst and bestselling author, Dr. Mary Barbera.
Dr. Mary Barbera: OK, so thanks so much for joining me on the show, Kelly and Suzie. I always like to start my interviews… this is actually my first interview with two guests. So thank you so much for joining me together. We’re going to start with your fall. Describe your fall into the autism world. Let’s start with Suzie, who’s the mom, and she can tell us how she got involved with the whole autism world.
Suzie Carpenter: Great. So thanks for having us, Mary.
Kelly Carpenter: Yeah, thanks.
Suzie Carpenter: Yeah, I’ve known Mary since I fell into the autism world. So Kelly is now 23 years old and back in the year 2000, she was diagnosed with autism. Prior to that, so she was born in 1996 and she was a very quiet, well-behaved baby. I think her story probably reflects very similar things of other parents stories. So Kelly, though, being a girl I think is an interesting component, and I’m sure you’ve heard of this too; with girls being diagnosed, there tends to be more of a delay in the diagnosis and sometimes not even a diagnosis until later in life. So for Kelly, though, we were lucky she did get diagnosed at age four.
Suzie Carpenter: Prior to the diagnosis, she was showing symptoms of really struggling in school with following the teacher’s instructions. She was at a Montessori preschool and they were the ones that actually brought it to our attention in terms of the word autism, in terms of the words, Kelly needs help. And in my mind, all of this is documented in my book, by the way, On The Bright Side, so I really get into the agonizing journey of the denial and then processing the diagnosis and the loss that followed in terms of, OK, this is a lifelong situation that we’re going to be dealing with. Which, of course, takes time to process. It’s not like all of a sudden you realize that.
Suzie Carpenter: But nevertheless, when she was 2 years old, she wasn’t speaking. And my mom said maybe you should get her hearing checked, maybe she’s deaf. Kelly was very happy, didn’t seem to show any signs of any struggle. So I kind of brushed it off. The other sort of glaring symptom was that she rocked. So she was a baby that rocked. She rocked in her crib. She rocked in the bouncy seat, and she would just sit there in her car seat, wherever she was. She would just rock back and forth and back and forth. And so I’d never heard of the word autism. I didn’t know what it meant. And even when she was diagnosed, we still don’t know what it meant.
Suzie Carpenter: So, you know, I would say that for sure, I was the kind of mom that was in denial at first. And then once I got connected to you, thank you, Mary, and you know, other moms and the services is key, right? You know, this is your business, but the services is key. So we went and got a neuropsych evaluation done, which can pinpoint to the specific needs in terms of speech, OT, and the ABA. So at about it took I would say definitely a year to go through the process of diagnosis and getting services, maybe even a year and a half.
Suzie Carpenter: Right around the same time that we started getting services, Kelly developed severe tummy troubles. So, you know, she started with the rotavirus or what we thought was the rotavirus. It was at Christmas time. Again, this is documented in my book. And at that time the doctors didn’t really make the connection with the gut and autism. I believe today they’re saying it’s even as high as 90 percent of kids with autism have got issues. You may speak to that, too.
Dr. Mary Barbera: I remember meeting you, we had a mutual friend and you lived five minutes from my house at the time. And I remember you calling and bringing Kelly over, actually. And I remember opening the door. And Kelly was four at the time, and she had very dark circles under her eyes. And you were, you know, trying to go through, you know, traditional G.I. doctors at Children’s Hospital. And she really looked to me very sick that there was something medically wrong, as you know, in addition to the autism. So, yeah. And your book, which I did mention in the intro, On The Bright Side it’s called, and it is a great book. It’s a very easy read. I read it in a couple hours and it’s just a great… It details your journey, but it’s written so well. So thank you for bringing that up. And we’re going to talk about a little bit more.
Dr. Mary Barbera: But before we do that, I’d love to jump to you, Kelly, and talk about like at what point, you know… What were your first memories of being different, being sick, hearing the word autism? Like how did that develop for you?
Kelly Carpenter: Well, my mom told me when I was at Montessori when I was in middle school, and that was the first time that I’d been told that. And I obviously don’t remember being really little. Nobody remembers being really little. So I don’t remember that. Well, I do actually have a couple of vague memories of being sick when I was little. I remember having really bad nightmares and I remember my stomach bothering me a lot. But when I first realized that I had autism was after my mom told me. And I remember telling my classmates at Montessori that I had autism to try to get them to understand why I was different and why I didn’t learn the way they did, and why I process things differently, because that was clear, how I learned differently from everybody else. And it was clear that I behave differently and process differently. And there’s nothing wrong with that.
Kelly Carpenter: But it was really kind of really kind of upsetting to realize that. And it was upsetting telling them because they reacted in a really new way. And they said, no you don’t, like it was stupid to even say that. And they totally didn’t understand and didn’t realize that it’s true, I actually do have autism. And that was probably because back then people were so focused on the male perspectives of it, on how males behave when they have autism and how they all believed that everyone moment that everyone that has it behaves that way. They didn’t realize that girls behave differently when girls have autism than boys that have autism, because it affects women very differently than it does men. And I think that’s the main reason that they thought it didn’t have it was because I didn’t act like boys who have. And also because it’s more it’s more visible on others and not as visible on others. And, you know, it’s not as visible on me. So that was probably another reason that they thought I didn’t have it, but that was really upsetting having them tell me that, because they really kind of hurt in a way, because they were saying that what I was saying about myself was not true when it is true.
Dr. Mary Barbera: Yeah. And there’s also the whole range of autism. So you were able to have a conversation and, you know, even able to get the information from your mom and relay that back. There’s a lot of boys and girls on the spectrum that are more severely affected that, you know, don’t understand. Like Lucas is 23 years old too, he was born right around the same time you were born. And, you know, he’s very impaired. So I never had to have or could have a discussion about you have autism and it means this and that. So I totally agree. We have the girl versus boy different. But then we also have the whole range of the spectrum.
Kelly Carpenter: Yeah. Yeah. That’s another thing they didn’t know about, how there’s a massive range to it.
Dr. Mary Barbera: Yeah. So, Suzie, how did you… because this comes up a lot and I’m not the real expert at all about this is like. At what point did you get advice or did you start to feel like, hey, I have to tell Kelly what’s going on. I have to label this as autism. How did how did you do it? Were there books or resources that we could even put in the show notes to help others who are in that situation? There’s a lot of professionals, too, listening who have a range of clients. And so some of them are ready for this information.
Suzie Carpenter: Right. Well, there’s two things I want to say. One is the resource that I use and I worked with this with our behavior specialist because we spoke about it all the time in terms of how Kelly was, whatever was happening in school, whatever was happening with at home. And we kind of agreed we wouldn’t tell her. And then we got to this point where I said, you know, I think she needs to know because these things were happening like it Montessori well before she told them that she had autism. There were things happening where she was extremely frustrated. Why can’t I do this? Why don’t I know that? You know there was questions coming out of her.
Kelly Carpenter: And why I couldn’t do stuff the same way the other kids could.
Suzie Carpenter: Right. And the teachers, I think one of the challenges was that when you look and appear and can speak, you know… The second point I wanted to make was that without any quantifiable insights, people are just assuming that she can do things that she can’t do. So the first thing that was super helpful was the Autism Acceptance book. And it’s actually a guide for… I think they call it a guide for being friends with somebody with autism or something like that. It’s geared towards neurotypical kids and how do they relate to somebody with autism. But the language in it is so simple and very clear and gets to the issues like hearing, seeing, sensory things, all this kind of stuff. And so I sort of each page or each topic, and then I actually took Kelly for a walk. We were outside walking and it was just a nice, calm environment, just the two of us. And I went through I was so nervous. I cannot say enough how hard that was for me because I didn’t how she’d respond. And as you guys know, most of you deal with autism, there can be tantruming and spiraling and acting out. How would she respond to me and would she be hurt? I was so afraid as her mom, was I going to hurt her in some kind of way by telling her this?
Suzie Carpenter: So the book was really helpful to just simplify it and have specific examples and things that I hoped she could relate to. And she totally related to each one and said, Oh, yeah, I do that. Oh yeah, I can feel that. And then it was easier to say, OK, yes, you have this. So that was excellent. And then I think going down the road, you know, pass middle school into high school, having the neuropsych evaluations, which we did, you know, every two to three years, really helped with how to approach the teachers and how to approach her programming because of course, as you know, they don’t have that information, then they’re just assuming she can do all these things. She can write these research reports. She can, you know, and she couldn’t. And so that helps with the frustration, right? Is to be able to quantify it and say no.
Kelly Carpenter: I remember writing I can’t do this or I don’t know on so many papers, because they didn’t get that I didn’t understand.
Suzie Carpenter: Yeah, it was extremely frustrating.
Kelly Carpenter: I do not remember you telling me… I do not remember the moment that you explained to me that I had it. I just remember that moment telling the students I had it. I don’t know why I don’t remember you telling me.
Dr. Mary Barbera: Because it was all you were processing. It was almost like, you know, a shock. You’re just trying to process it. The fact that you have been related to your friends is actually pretty impressive. But I also want to talk a little bit about like when you were 4 to middle school or, you know, 4 to 8 when you couldn’t necessarily read or write… I think that the other issue, and I see this a lot, is that little kids with higher functioning autism who can speak, they just look like they’re being brats. And you look like you’re not being a good parent or, you know, the kid needs more discipline. Or did you get that, Suzie?
Suzie Carpenter: All the time from family, from friends, from school, everybody. We were treating her at a clinic for her gut issues and whatnot. And even there, the nurses would get really frustrated with her and the doctor sat them down and said, listen, she would not be here if she wasn’t sick. You need to understand this is because she’s sick. And that actually really helps me because as you said, as the parent, you feel guilty. You feel like you’re not doing your job. You feel like, can’t I do this better? Can’t I find a way to stop this, to fix this? You know, and you understand their suffering. How can you help them with their suffering? So.
Dr. Mary Barbera: And the higher functioning, the higher language the kid gets, the more, you know, even for you, Kelly, were you… do you remember a lot of school teachers or preschool teachers being like, like reprimanding you for being kind of bad or…
Kelly Carpenter: Yeah, definitely. Yeah. I have lots of memories of that. And I remember the other day when me and my mom were going over your questions, a memory resurfaced when she was asking me the questions and it was another Montessori memory. I have so many memories from Montessori because that was… I feel like that was the time that I started to really remember things better.
Dr. Mary Barbera: So you went to Montessori preschool, but then you also went to a Montessori elementary school?
Suzie Carpenter: Fourth to eighth grade.
Dr. Mary Barbera: But you also went to a Montessori preschool.
Kelly Carpenter: Yeah. I don’t remember that though.
Dr. Mary Barbera: Okay. So when you’re talking about Montessori you mean fourth through eighth grade. OK. What do you remember? Sorry.
Kelly Carpenter: It’s okay. I remember lots of memories from that because there was a lot of… It was very difficult and very upsetting. And it was very traumatic. And I was bullied a lot. And the teachers did think that I was acting like a brat, and so did the other students. And they did not understand why I was so upset. And they do not understand me at all. And they did not understand why I couldn’t do the work. So there’s a lot that goes into it.
Kelly Carpenter: But there was this time where me and the teachers and some of my other classmates were in were in the library, and we were talking about a sleepover that some of my other classmates had and they did not invite me. And I was really upset that they didn’t invite me, and I was like, so mad at them, and I, like, lashed out at them. I was like, why don’t you invite me and everything? And the teacher was trying to explain to me their perspective of it. And they’re trying to get me to understand that, you know, that they didn’t want me to go or whatever. But what I really remember is that the teacher was didn’t like the teacher was telling me that it was bad that I was upset. The teacher was telling you that I couldn’t be this upset. And I got very passionate about that yesterday… I mean, when we were talking about it, because I was remembering feeling how like, you know, how sometimes when you really get into a memory and you tap into that, like tap into the way you felt in the memory. And I tapped into it and I remembered, like I just said to myself, I was like, just realized, processing it again, probably them billionth time, wherever I look back on those memories a lot, they haunt me a lot.
Kelly Carpenter: But I remember feeling like I just suddenly remember realizing it was OK that I was upset. I suddenly thought to myself, you know, it was really wrong of them to tell me that I couldn’t be upset because I had a right to be upset. Other people not on the spectrum who could have gone through the same thing would be upset, too. And I was also saying to my mom that, like, it is almost like the teachers were feeding the other kids ego. The other kids, you know, pride or whatever, because, you know, they didn’t understand why I was upset either. And they were like, you know, like laughing at me and stuff and looking at me like I was an idiot for not understanding why didn’t invite me or whatever.
Dr. Mary Barbera: And you’re the teachers knew, Suzie, that Kelly had autism, right?
Suzie Carpenter: Right. And they had all the reports.
Dr. Mary Barbera: But even still, they had the reports, but, you know, they’re not experts.
Kelly Carpenter: They expected me to act like the other kids. They expected me to, like, apologize. And they expected me to be like, oh, I’m sorry for getting upset about this. Whatever. And then I think that’s really stupid. I think teachers should never do that. I think teachers should acknowledge that kids are upset and they should let them be upset because everybody has a right to be upset, especially when they’re left out like that. And when they’re really mistreated. Really bullied. Yeah. I wanted to talk about the bullying, too.
Suzie Carpenter: One reason that you were saying how bullying is so hurtful to anybody, and whether or not you’re on the spectrum, it really changes a person’s beliefs about themselves or can change their beliefs about themselves. And that’s where it leads into more detrimental situations.
Dr. Mary Barbera: And bullying is such an issue for everyone. And I appreciate you bringing that up because I mean, and especially like fourth to eighth grade or in high school and everything. I only have boys. You have two girls, Suzie. But, you know, I feel like the girl drama and the girl bullying is super intense. Even toward typically developing kids, like you said. And then you have all these learning challenges and social challenges and you’re trying to get through your day. It’s sensory processing issues and then all of that, and then you have a teacher kind of standing up for the bullies. That’s it’s really, really tough.
Dr. Mary Barbera: Do you have any good book recommendations, either of you, on bullying? For professionals out there that could help teachers and help parents?
Suzie Carpenter: We do not. I would say our approach was really, you know, I would say there’s a good resource that you could share in terms of the tapping. So some of you know, a lot of the work that we’ve done, Kelly and I, has been, I would say, focused on two to three things. First of all, as you know, the diet, which again is in my book, going through that whole journey of eliminating food triggers, because food triggers for us, the way we worked, it was I would say to Kelly, we talk about it. We talk about it. We talk about it. Because I didn’t want to just be the food police saying you don’t eat these things. I wanted her to feel it, to know it, believe it and live it. And that way she could carry it into adulthood because she does have celiac disease. She did have inflammatory bowel disease. And, you know, so this was going to be, you know, acid reflux, things that would carry through her life. So we worked on that and we would use the mantra ‘eat to be your happiest self’. So instead of feeling badly that she couldn’t eat what somebody else was eating, I would just say, well, listen, you want to eat to be your happy self. You make the choice. And Kelly has a higher level of reasoning that we could have those conversations. So that’s one thing.
Suzie Carpenter: And then so that if that really helped in terms of the outbursts, the tantrums, the crying. So social situations may still be challenging, but at least there wasn’t sort of a misunderstanding or a dramatic response that was more severe. And it allowed her to sort of process things in a more calm way. That was definitely one thing. We always talked about everything. That was one of my goals as her mom was to always be there for her every day whenever she came home from school so she could just download everything. And that was another thing that we worked on. And but in terms of specific resources for bullying, I wouldn’t say that we have any.
Suzie Carpenter: I will say, though, that I again, as a parent and my choices I made as a parent were to always put her in situations where I would try to set her up for success. Montessori, unfortunately, in middle school was not a success. But I think middle school is, everybody would agree, are challenging years.
Dr. Mary Barbera: And you know, I think you’ve had specific challenges with schooling because that’s another problem or question I get a lot is, you know, you’re too high functioning, high language. I mean, you’re the exact same age as Lucas. And, you know, you could have eventually been in his classroom like you’re too high functioning for some support or autism school, but for a variety of reasons you’re having a hard time navigating on your own and you’re almost too high functioning to have an aide with you. It was a real challenge. I know Kelly also has some learning difficulties along the way and everything. So some of the kids are very hyper lexicon like genius level I.Q.s and all that. And this like there’s so many differences for each child.
Suzie Carpenter: That’s a great point in terms of just the individuality and the individual approach. And really as a parent and as a professional, you know, to approach it from that standpoint of looking at the individual, that’s why we have IEPs, right. But I think this is a great transition into the next phase for Kelly, which was when she got placed in a school where she had the supports in place that she really needed and probably should have had her entire school career. But nevertheless, thankfully got when she got to ninth grade. And we talked about that, too. Right. And so that was a situation where it was it was more supportive in every possible way.
Dr. Mary Barbera: Was it an autism school? Or what was this school when she was in that grade? You don’t have to name the school if you’re not comfortable.
Kelly Carpenter: It’s fine. It was Vanguard. It was a private school and it was autism-friendly. Everybody there had autism or ADHD or some kind of disability that was related to autism.
Suzie Carpenter: So hold on one second. Just so just for the record, it was a privately approved public school. So she got placed there where we settled with the school district. So we did have to fight the school district to get Kelly there. We couldn’t place her there as parents.
Dr. Mary Barbera: Also the Vanguard School is for kids who are conversational.
Kelly Carpenter: That school’s really great because they have a really great system where they have it all organized and they have the high functioning kids together and the low functioning kids together. And that was the first place that I was understood and the first place that I actually made friends and actually learned because I did not learn in middle school hardly at all, because they did not know how to teach me. So and then me and my mom have often wondered how it would have been if I’d had been at Vanguard my whole life, I probably would’ve been so much better. I would have learned what I needed to learn at that age.
Dr. Mary Barbera: So you really felt that you didn’t learn much at all from middle school.
Kelly Carpenter: No, I didn’t.
Dr. Mary Barbera: Did you learn like reading, writing, math, or were you just struggling with everything?
Kelly Carpenter: I was struggling with everything. I mean, like I learned a little bit of reading and a little bit of writing. Like, I actually think the thing I learned the most was writing. That’s always been one of the things I’ve found the easiest to do out of all the different types of learning and stuff. Like art and writing that’s like my thing. Like that’s when I’m really best at when it comes to all that stuff. But I really struggle with math and I really struggled with science and history and all of that. But I got better at that when I was at Vanguard because they were better at teaching that. So today I’m fine, but like back then it was like really hard and everything.
Dr. Mary Barbera: Yeah, yeah, yeah.
Kelly Carpenter: And then what I would say I mostly learned from middle school was, you know, behavior things. Like I learned about bullying from being bullied and like I learned about like, you know, like not fitting in and all that stuff. And I learned how it’s really hard to make friends, like really good friends that aren’t going to go behind your back and stuff. Because I had some friends at Montessori, but they like went behind my back and they lied about me and they betrayed me and they made fun of me. So it was really bad. But it was a lot better when I got to Vanguard, because when I got to Vanguard it was like the opposite. Like I made friends who did not betray me. They were nice to me and who appreciated me and did not make fun of me and who, you know, supported me and stuff.
Suzie Carpenter: It’s a huge topic around self-confidence and self-esteem. And so Kelly went on, you know, at Vanguard to really thrive. And, you know, she starred in the play twice and they had a transition program that she spent two to three years. And she had a job, you know, where she didn’t get paid, but she was out, you know, volunteering. They called it volunteering, but she was out working at the local department store. And again that confidence building.
Kelly Carpenter: And social skills building. It also really helps with social skills because they had speech, they had speech classes and stuff where they talked about interacting and stuff. And that actually really helped me understand what happened in middle school better.
Dr. Mary Barbera: And once again, there was more experts at autism there, who understood how to talk about bullying.
Kelly Carpenter: Yeah. Yeah. And respected perspective thinking, too. Like it really helped me learn about perspective thinking, which I obviously didn’t know back then in middle school. And they didn’t know that. That’s that I think that’s one of the reasons they didn’t understand because they didn’t know that I did not know how to think of the other perspective and did not know how to process that. But I learned that at Vanguard and I actually think that was one of the first things that I learned. Because I really wanted to learn that, I really wanted to understand things better. And that was one of the things that I learned to understand first, I think. And actually there’s other kids that I think are that were actually really bad at that, too.
Dr. Mary Barbera: Right. So they have real curriculums. And you had also peers of your own range of autism or even other disabilities like ADHD to kind of practice on. So they weren’t like completely typical. So they had their own issues, too, so that you could kind of learn together. And it was probably a really fantastic turning point for you.
Kelly Carpenter: Yeah, it was.
Dr. Mary Barbera: So at that point, you know, at some point during high school, you also started dating and learned to drive. So those are great topics for us to touch on, too. I know we’re not going to get to every topic. You have a wealth of information, but… So which came first, dating or driving?
Kelly Carpenter: Dating.
Dr. Mary Barbera: OK. So this was someone from the school that you met?
Dr. Mary Barbera: I dated a couple of the boys that went to my school. That was actually really, really good learning experiences. I learned a lot from that.
Suzie Carpenter: Uh-Huh.
Kelly Carpenter: What were you going to say, mom?
Suzie Carpenter: Nothing, I’m listening to you. Well, there’s lots to say.
Kelly Carpenter: And I wanted to touch up on the bullying a little bit more. I wanted to explain more about that. But if you want me to jump into the dating thing first, that’s fine.
Dr. Mary Barbera: No. Go ahead, you could say wherever you to say that.
Suzie Carpenter: The dating thing is interesting, too, because of the relationship, give-and-take, right in conversations and how to handle that. And Kelly, unfortunately, got into several situations that were not healthy with her dating. It’s just an opportunity to share that, you know, as her as a mom I watched her go through it and I tried to let her experience it for herself or the processing of what was happening. But one of the boys she dated became very obsessed with her and abusive and had got expelled from school. And it was a terrible story. But the point is that Kelly was feeling like she needed to help him. So Kelly is an empath, a very sensitive person, and she really felt that God had put him in her life to help him. And she had to go through this process of realizing that she couldn’t help him. And then she also had to shift that pattern so that she wouldn’t get herself in that type of relationship over and over again. Right. Which is a common thing with women. Common thing with women who are…
Dr. Mary Barbera: Not even on the spectrum. So in a way, Kelly, it’s kind of like a form of bullying. Like there’s a there’s a fine line between bullying and obsessiveness.
Kelly Carpenter: Yeah. Yeah. That’s I would say that they kind of tied together because I was bullied in a totally different way dating than I was with just friends in my previous school and stuff. I had two incidents like that. I had two boyfriends in high school that were very possessive and abusive and controlling, and they didn’t understand about how important it is to think of the other person’s perspective and to be considerate and respectful, and not know how to respect me at all. And that was horrible, but I learned a lot from it.
Kelly Carpenter: Reflecting back on it and I learned a ton from it and also reflecting back on the bullying, too. I learned a ton from that, too. And the other day my mom and I were talking about that. And earlier you mentioned one of the quotes that I said. I just wanted to explain where that came from and what made me think of that. I was explaining to my mom, like I was just thinking really deeply about it, and I was thinking, I wonder how they would feel if they knew that those memories of what they said to me and how they treated me hot haunted me for years and how it really hurt like it really hurt me. And it affected what I thought about myself. And that’s where that thought came from, where I said to my mom, really bad bullying and like being abused can really make you have really unhealthy beliefs about yourself, because when people go through that, they think to themselves, why did they do this to me? There must be something wrong with me. Why did I deserve that? Or maybe I do deserve that. Whatever, you know, looking like it makes you feel. It makes you think really bad things about yourself that are not true. And I want people to know that what other people say to them, especially bullying, what bullies, what they say is never true, and they should never take it to heart, that they should never believe what they tell them because it’s not true. And I came to realize that after experiencing the opposite, like the first few times I had real good friendships and where I was treated with kindness in the first few times that I had good relationships. That’s when I really learned all those other people were so wrong about me.
Suzie Carpenter: Yeah, I think it’s a really good transition to talk about for parents and professionals, cause I know your audience is probably the ones that are in this phase or moving into this phase of teens or young adults, is as actually Kelly spent a lot of time after transitioning, because when you age out of your program, it’s a whole nother conversation. But, you know, all those supports go away and it’s a very challenging time. And I’ll just leave it at that. But what happened was I was freaking out.
Dr. Mary Barbera: When you talk about transitioning, even for someone as high functioning as Kelly, most states in the United States, they allow you to go to school until twenty-one.
Kelly Carpenter: Yeah, that’s what they did. They had a program where you were allowed to be there twenty-one.
Dr. Mary Barbera: So some people listening don’t even know that. They might have little kids. But yeah, whether your kid is severely impacted like Lucas or, you know, fully conversational like Kelly, the law, the IDA states that you can get support through the age of twenty-one or at twenty-one, like it depends on your actual birthday. Lucas’s birthday’s July 3rd. So in the summer, when he turned twenty-one, he was no longer eligible. But if you turn twenty-one in, say, November, you can complete your whole year until you’re almost twenty two. So just to throw that out, because that’s a good piece of information that most people don’t know. So what Kelly then did get done school at twenty-one then, let’s talk about that little bit Suzie.
Suzie Carpenter: So you know, we considered a lot of options, and Kelly I’m happy to have you speak, I just want to say that we talked about college and we decided that her path really was in college. You know, she had some interests that we would focus on, one of them being photography. So she took some courses in photography and one on one with an instructor. And then at a local college, she took a course in photography. In addition to that, we sort of took the time… I’m an empowerment coach myself. So I love to work with women on empowering skills and whatnot. And of course, my own self-empowerment has been a journey. So I’ve read a ton of books and taken courses myself. And so I thought, why not feed Kelly? Because as I said a few moments ago, I was freaking out. What is she going to do? How she going to meet people? How she going to get a job in any of these, you know, out into the world questions? And how do we know… We don’t want to just force a job on her so she can say, oh, she has a job and she’s getting a paycheck? Let’s really be mindful about it.
Suzie Carpenter: So what we ended up doing was kind of, my husband refers to as sort of homeschooling college. So I fed her a bunch of books, and I didn’t know how she’d respond, but she just ate it up. And she spent a lot of time reading these books. Meet Your Soul was one of them. Meet Your Soulmate was another one. Return to Love by Marianne Williamson. So to move through the fear-based thinking and I have to fit in or I have to do these things, all your cousins are going to college, people around you are, friends are going to college, what’s wrong with me? You know, all of this kind of stuff, but really honing in on who Kelly is deep inside and what her gift is to this world. And she spent a good year, I would say, at least on that. And it really helped her to get clear about, you know, I don’t… And she even said this when she was at Vanguard, that she didn’t want to go to college. So to kind of try to remove yourself from any external pressure from, you know, letting go of expectations and being able to really hone in on what her strengths are, what her gifts are, what her purpose is in this world. She got really clear about that. And so she’s hoping to speak more about that.
Suzie Carpenter: And it also impacted her profoundly in her love relationship that she’s been in for almost a year now with this young man named Anthony. And she put it out into the world. She could say this better than me. But I just have to say it in case we don’t get to it. She shifted those beliefs around who she wasn’t as a woman in relationships and she created… I mean, I’ll say a thousand things, but a list of things and what she wanted in a relationship. She didn’t quit. She was very specific. So she really put it out there. This is what I want. This is how I want to be treated. This is the kind of person I want to be with. And she really then flipped it and manifested a healthy relationship.
Dr. Mary Barbera: Wow. So how did you meet Anthony?
Kelly Carpenter: We actually met at my workplace when I worked for a startup called Beloved Bath that’s an autism friendly company. And they’re really nice and really awesome. And I make the stuff with them, make candles and soaps and stuff. And I actually last week they actually were interviewed. They were making a commercial to help promote the website and stuff. I do not remember the name of the company…
Suzie Carpenter: There’s a company doing a short film. Their story is mothers, and any moms out there listening to this, I mean, a lot of the autism moms, you know, I mean…
Kelly Carpenter: Can I explain it? But like I was going to say that he does not work at my workplace. He actually did a documentary for college because he was finishing college when we met and he did a documentary about kids and adults on the spectrum finding jobs and working and stuff, because that’s big crisis right now about how there’s so many people there, there’s so many people on the spectrum that are unemployed. And that’s a really big topic for the both of us and we’re both very passionate about changing that and helping people, helping the people on the spectrum find jobs and stuff and so are Pam and Pat, my boss is a Beloved Bath. But it was really great when we met because he included them in his documentary and he interviewed me for his documentary. And then after that we hit it off and we went out together afterwards and it was awesome.
Dr. Mary Barbera: Wow. And is he on the spectrum as well?
Kelly Carpenter: He is. Yeah, he has a twin brother who’s on the spectrum. Anthony’s very high functioning like me so you can hardly tell, but his brother’s more low functioning, so it’s more obvious in his brother. And his family is really nice. And they’ve done so much to help Alex and to help Anthony.
Suzie Carpenter: They’re identical twins.
Dr. Mary Barbera: Oh, wow. And one with severe autism and one with high functioning autism. Wow. That’s amazing. Well, that’s so great. So let’s just flip real quick to driving, because I know that that’s a thing that comes up a lot. So what age did you learn to drive and was it… Did you have to do anything special or was it stressful or is it still stressful now?
Kelly Carpenter: I love driving. And I actually recently got my first car, which I’m really excited about and happy about. I got a red Fiat 500 and that’s been my dream car for a couple years since I started driving.
Suzie Carpenter: And you saved your money to buy it.
Kelly Carpenter: Yeah, I saved my money from work to buy it, which felt amazing. But when I started driving in high school, I started driving when I was 18. My parents didn’t want me to start at 16. They wanted me to wait a little while because of how so many people who started at 16 got into accidents and stuff.
Dr. Mary Barbera: Typically developing kids. But I have heard that kids on the spectrum, that especially boys, they mature a lot later. So it’s not uncommon to push it off. And also, I think with driving, there’s a lot of decision making. It’s not just following the rules. There’s a lot of like, well, if this happens and this happens, then you do this. And there’s a lot of complex decision making about not just the mechanics of driving, but if you do get into an accident and all that stuff.
Kelly Carpenter: I actually did the test to get my permit when I was a senior in high school. So it was like at the end of high school. And I passed the permit test the first time. And I studied really hard for it. I memorized the book and everything. And I really enjoyed doing that because I was very excited to drive and I was very excited to learn about it. Then I once I got my permit I practiced driving with my parents and I went through the whole thing with practicing parallel parking and stuff with my dad. And that was very hard. And we had to do that several times to get it right. But I did I eventually got it right. And I passed the test the second time. The first time I failed because I was so nervous because the person that was with me, the instructor, was not as friendly as the other one.
Suzie Carpenter: So just as a side note too, Vanguard, her school, does have a driver’s education program, which she did. But I also took her to Bryn Mawr Rehab Hospital. So this is a recommendation for anybody out there considering because I’m sure there’s plenty of hospitals or places that do that. You know, they work with people who’ve had strokes and things like that or brain issues. And so I had that guy sort of do his own little test and work with her on some of the, as you said, more challenging components, you know, with the multi-level decisions or, you know, that kind of thing, turning left into traffic was a big thing for her, took her a long time to get that she couldn’t turn. Some simple things that for most people are more intuitive or, you know, the incidental kind of learning for her was more challenging. But it just like I would say, again, like it’s a common theme with so many things, riding a bike, tying your shoes, go into the bathroom, all of these teachable things get better and there’s a different timeline on it. And my husband’s always been great about saying that like this. We just need to give it more time. She just needs more time.
Kelly Carpenter: You know, so I’ve been dragging for four years now and now I’ve got that the hang of it.
Suzie Carpenter: So she drives herself to work and she gets herself to the grocery store to get groceries, and to the park. Yeah.
Dr. Mary Barbera: That’s awesome. That’s awesome. Yeah. And even with typically developing kids I know with Spencer my younger son who learned drive, you know when you first get your license it’s like, you can’t drive out of the county or you can’t drive on highways by yourself. You know, just go on local roads by yourself. And then I’m going to be, you know, in the car on your highway trips for a while or don’t cross state lines or let me know. You know, because it is experience. And even though, you know, I’ve been driving for, you know, decades and you’ve been driving for four years, I mean, there’s always unpredictable things like ice and accidents and people hitting. And so, you know, it’s never like a sure thing, but so is walking out of your house. Anything can happen.
Dr. Mary Barbera: I mean, one of the things that really impresses me and I feel like Suzie and I have been good friends for decades now, but it really impresses me how supportive you’ve been to Kelley and how you’ve been her person. I’ve read your book. You’ve been her person in terms of her dietary changes as needed, her coping, her self-growth, her, you know, learning to drive, not putting pressure to go to college. It sounds like you guys are really a great pair, which is I think just so awesome. That’s why I wanted to have you on together. And I think you’ve both an excellent job of giving our audience some food for thought about these different topics.
Dr. Mary Barbera: So the way I’d like to end interviews is part of the podcast goals are for parents and professionals to be less stressed and lead happier lives. And so a lot of what you’ve been talking about is good advice. But do you have any one or two tips that you would recommend for parents and professionals with listening to be less stressed and be happier?
Suzie Carpenter: Well, I think tying it back real quick to the diet… A lot of people who are so busy and not just autism parents in general, I think, you know, life is busy and I get that it can be stressful to think about. But today is the perfect time to think about it, because there’s so many products out there. There’s so many diets out there. There’s communities around it. So getting off some of the more reactive foods, I think can be key to just creating more peace in your life.
Suzie Carpenter: And I just I’ve lived this myself. You know, Kelly and I have been partners in this for years. And I’ve seen myself, even if I eat something that I know was a trigger for me, It makes me… And Kelly will attest to this. And I will attest to her. And so everybody’s different. There’s no one size fits all, just like everything else we’ve talked about. But it can help to get off some of the things that will make you more up and down and more stressed. Sugar will make people more stressed. Caffeine will make people more stressed. It’s a, you know, it’s a difficult thing because when you’re tired, you’re not sleeping at night, you know, you want that crutch. But the more you can kind of just put it in perspective and try to keep those triggers in mind, I think it’s hugely helpful in reducing stress. And then there’s the whole mindset piece. We’ve touched on a little bit in terms of beliefs, you know, taking time every day to sit, be with yourself and write and think about what’s important, what’s good, you know.
Dr. Mary Barbera: So, again, there’s such this movement going on right now collectively around gratitude, around presence. Listen to people, find books, podcasts that focus on that. I know for me, that’s a daily practice. Some people love yoga. You know, I love nature, getting out in nature. Meditation is huge. There’s apps for all this stuff. So, you know, if you’re the kind of person that is… I mean, I even have people in my life, whether they’re clients or family, that say I don’t have time for that. You know, it’s a resistance. And so being able to take it one step at a time and just pick one thing and tell yourself you’re going to do that one thing, take one minute, chunk it down into the smallest little thing to get yourself going, get the ball going in the direction that is more towards your own self-care and being able to let go a little bit more of the overwhelm, because that’s really what it is, is the overwhelmed.
Suzie Carpenter: And getting help, you know, finding a community. I’m looking to create a community online. I don’t know how it’s going to look yet, I mentioned this to you the other day, probably a private Facebook group to start, but to create some type of mastermind for moms who are with teens and young adults just so that we can gather and not to be a support group, but really to offer inspiration around this self-care and guidance around, you know, how to live life as you as a woman are transitioning and as your child is now a young adult and they’re transitioning, you know. So I’m looking to do that as well. And we will continue to speak as much as we can as a team here. Did you have any thoughts, Kelly, on stress? Things that have worked for you when you feel overwhelmed or anxious?
Kelly Carpenter: I find that tapping really helps.
Suzie Carpenter: Emotional freedom technique.
Kelly Carpenter: Yeah, emotional freedom technique, where you go like this on your face and your body where it literally does release the energy and the stress. It really does help you feel better. I did that a few times recently and I really got into that recently. And that actually has helped a lot with a lot of things, not only stress, but also with getting over old memories and stuff, releasing trapped emotions.
Dr. Mary Barbera: I’ve actually seen tapping done really well one time I was at a conference, and I’m not, you know, I’m not like a woo-woo kind of person. I tend to be more conservative, but I’m getting more woo-woo. But when I saw this tapping done by somebody who’s certified and to help people through tapping stuff, it was extremely powerful. Where can people learn about tapping and we can put it in the show notes?
Suzie Carpenter: EFT universe? I think it’s a great resource. I have a good friend who does it, who worked with Kelly. Her name’s Carrie Saba. We can put it in the show notes. To your point when it’s done right, I think it is important to have somebody to work with in the beginning to help you because you use phrases. It’s not just the tapping. You actually phrases as you go through the process.
Dr. Mary Barbera: It’s almost a cross between meditation and mindset. It is very interesting. But like you say Suzie, you need to learn the right way by somebody that knows what they’re doing because otherwise it can just really look like this is not really helping the situation. So I think tapping would be something we can definitely in the show notes. And I love all of your mindset things and you guys do FaceBook lives?
Suzie Carpenter: Well, I am. My Facebook handle is Suzie Welch Carpenter. Kelly Carpenter is yours. We usually do FaceBook live on mine. Suzie Welch Carpenter. And sometimes I post them onto On The Bright Side has a page as well, my book has a page On The Bright Side. Kelly is also highlighting her photos on Instagram and on Etsy. She has an account on Etsy. So it’s Kelly Carpenter Photos on Etsy.
Dr. Mary Barbera: All right. Well, then people can, you know, visit you. And keep in touch with all the great things you’re doing. I think you guys are a great pair. Excited to see where you both go in the future. And thanks so much for your time today. And I will talk to you guys soon.
Suzie Carpenter: Awesome. Thank you.
Kelly Carpenter: See ya.
If you’re a parent or an autism professional and enjoy listening to this podcast, you have to come check out my online course and community where we take all of this material and we apply it. You’ll learn life-changing strategies to get your child or clients to reach their fullest potential. Join me for a free online workshop at MaryBarbera.com/workshop, where you can learn how to avoid common mistakes. You can see videos of me working with kids with and without autism. And you can learn more about joining my online course and community at a very special discount. Once again, go to MaryBarbera.com/workshop for all the details. I hope to see you there.