#096: My Story with Epilepsy, Autism, and Depression with Rachel Barcellona

autism and epilepsy

How soon should you tell your child about their autism diagnosis? When Rachel Barcellona was diagnosed at the age of three, her mother discussed it with her to help Rachel understand herself better. Today, Rachel is an advocate for people with autism as she navigates her own journey into adulthood. Looking back on her childhood, Rachel shared with me how the bullying she experienced in middle school affected her autism and depression, how an epilepsy diagnosis turned her life upside down when she was ten, and then how misdiagnosis and treatment of ADD caused a near-death experience. Of all of these medical problems, Rachel has an interesting perspective into which ones had the biggest impact on her life.

Because Rachel was so shy when she was a child, she was often put into social skills groups. There were so many boys in these groups, and there are only so many conversations you can have about Thomas the Tank Engine and Pokemon! She wanted to be around more girls, so she started entering beauty pageants.

Beauty pageants opened up a whole new world for Rachel, and they helped her improve her eye contact, learn to interview better, gain confidence speaking, and practice walking in high heels. She’s been able to take those skills into college where she became an advocate for adults on the spectrum and helped create a support system where none had previously existed.

It was a delightful interview today with a well-spoken young lady who has such a bright future ahead of her. I hope that you’ll enjoy our thoughtful conversation about the intersection of autism, depression, and epilepsy.

TODAY’S GUEST

A senior at the University of South Florida, double majoring in English and communications, Rachel is an advocate for those with disabilities and has created her nonprofit, The Ability Beyond Disabilities to inspire and help those that have challenges to strive for their dreams as well as to educate those who might not understand the challenges faced.

As an individual with autism, she often felt like she could not do many things. People with disabilities or anyone who is different are often targets for bullies as she was, but because of her life and social experience, she has overcome many challenges. Today Rachel is a spokesperson for the Center for Autism and Related Disabilities at USF (CARD-USF) and also on their board. She also holds board positions at Unicorn Children’s Foundation, The Els Center for Excellence, Kulture City as well as the Dyspraxia Foundations USA, all of which provide services to individuals with disabilities including occupational, physical, along with music, and art therapy. As people with autism are reaching ages of employment, her focus is now also to bring awareness to individuals and companies to provide an opportunity for employment.

Rachel has performed the National Anthem at major sports events and at Madison Square Gardens. She also spoke at the United Nations on World Autism Day and recently filmed a short documentary for Sephora. Currently, she works at a radio station in New York and has her own segment. She is an avid writer and is working on a series of fantasy novels.

YOU’LL LEARN

  • How learning about her autism diagnosis at the age of three helped shape Rachel’s identity.
  • The many different advantages Rachel found from being in beauty pageants.
  • How the university has accommodated Rachel’s autism.
  • Which comorbidities have a greater impact on Rachel’s quality of life.
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Transcript for Podcast Episode: 096
My Story with Epilepsy, Autism, and Depression with Rachel Barcellona
Hosted by Dr. Mary Barbera

Mary: You're listening to another episode of the Turn Autism Around podcast. I'm your host, Dr. Mary Barbera. And I am thrilled to welcome a guest with autism, Rachel Barcellona, who is a senior at the University of South Florida. She's double majoring in English and communications. And Rachel is an advocate for those with disabilities through her nonprofit, The Ability Beyond Disabilities. She's also a spokesperson for the Center for Autism and Related Disabilities at USF. She's also on the board of the Unicorn Children's Foundation, the ELS Center for Excellence, and a number of other foundations. She is a singer and she participates in pageants. So she has a wealth of background for a senior in college.

Mary: In this interview, we talk about how to tell a child that he or she has autism. We talk about bullying, depression, her suicide attempts, her medications, epilepsy, and the comorbid conditions that she has and other children might have. And we also discussed her, her work in the pageant industry, and then how being in pageants really helped her on her journey. So please help me welcome Rachel Barcellona.OK, so, Rachel, thanks so much for joining us today.

Rachel: No problem.

Mary: I got to know you a little bit just on your Web site and some past interviews that I looked at. So I wanted to have you on because I think you have a really fascinating background and you're such a spokesperson already for the autism community. So thanks so much for your time today.

Rachel: Oh, I'm so happy to be here. Good.

Mary: Good. OK. So I'd like to start out with just asking guests like describe your fall into the autism world. And I know for you as a person with autism, like, how did you know you had autism? When did you find out? When were you diagnosed, that sort of thing?

Rachel: Well, I was diagnosed at the age of three and I really didn't know that I had autism. But I know that I was different because I wouldn't play with the other kids. I was very quiet and I'd always play in the corner while everyone else was off with their friends and doing things. And I know that my mom and I went into the principal's office and they told me I was different, but I really didn't know what autism was until my mom explained it to me. But luckily, she was a nurse and she wanted to do everything she could to make sure that I was successful in life.

Mary: Wow. And what age did she tell you had autism?

Rachel: She told me when I was three. She told me that. OK, you're different. But it's not going to stop you. And it was just a constant journey of figuring things out because my whole life I was listening to my mom talk with teachers. And at the time it was called Asperger's. And when I was a kid, I thought my mom was swearing. And she's like, oh, no, that's just what you have. And I kind of thought I was an alien and I never related to the other kids. So that was really sad. But I tried my best to just be my own person. Yeah.

Mary: Did you get early, like therapy, speech therapy, occupational therapy, ABA? Did you get any therapy when you were little?

Rachel: Yes, I did a lot of occupational therapy, physical, language, everything under the sun. I enjoyed the therapy that I had. I loved the music therapy, especially because I was terrified of loud noises and I would listen to opera tapes for hours on end just so I could get through a fire drill.

Mary: Wow. Yeah. My son Lucas always enjoyed music therapy, too. And I did a podcast interview with Marlene from she's with the El's Foundation. And I see that you're on the board of the Els. Do you know do you know Marlene?

Rachel: Yes, I do. She's very amazing.

Mary: Yeah. So we can link that in the show notes the episode with music therapist who's also a board certified behavior analyst at the doctoral level like I am. And she was a great interview about the power of music therapy and actually the research behind it, because a lot of ABA practitioners like myself, a lot of ABA people really don't see the value in music therapy. And I know we'd like. I'm happy you mentioned that because I know for Lucas, he's still he plays the autoharp. I don't know if you've ever heard of that.

Rachel: I do. It's so awesome.

Mary: And yeah. And he goes to great music therapy now since COVID, he doesn't, but. Yeah. So it sounds like you had a great mom who was, you know, constantly like telling you were different, but also trying to help you get to your reach your fullest potential constantly. And doesn't sound like it was maybe a one-time conversation, but just kind of as you grew up, more of, you know, you have Asperger's and.

Rachel: Yes.

Mary: OK. So I did do other podcast interviews, Carrie Magro. I always pronounce his name wrong. Eileen Lamb and Kelli Carpenter. Plus a few other moms of kids with autism who had, like you, have very high functioning language abilities. And they talked about, like how to tell kids that they have autism. Now, I know you're not an expert on this, but since you have high functioning autism, like I never had experience telling Lucas he had autism because he doesn't have the cognitive ability to understand that. But I know there's a lot of parents out there and professionals who get asked this question all the time. Do you think there's a right age or do you have any resources that you can point people to to, you know, discuss the autism diagnosis?

Rachel: Well, I think that kids should be told as early as possible, especially right when they're diagnosed, because they need to know that autism is a difference. But there's nothing wrong with that.

Mary: OK. So you're advocating for not secrecy.

Rachel: So no secrecy at all. I mean, we should be very open with things.

Mary: Yeah. Yeah. Because, I mean, you will be going to doctors� visits or occupational therapy. And it's kind of it makes it really difficult. And it's kind of I don't think it's the healthiest to not disclose things to kids who can understand it. Yeah. OK. So I know that in addition to being diagnosed with Asperger's and autism spectrum disorder, you also had some other diagnoses come along the way. So can we talk about like what was your first struggle? Was it allergies? I know you have allergies. You have epilepsy, came down the pike and depression. And so, like, I'm not sure in what order or if it's important, but like, can we talk about, like the other things that may be more impactful to your life than even autism?

Rachel: Sure. I mean, I know that I get really allergic to pollen. And when the seasons change, I mean, my nose really starts to run. And I mean, a lot of people experience that, too. So I'm not alone with that. So I don't think that sense impactful to my life. The epilepsy. And that came when I was about 10 to 11. I had my first near-death experience at I think ten in fifth grade, and that was when I was put on heavy medication which misdiagnosed with ADD. And that was really rough. But I'm thankful for my mom for being a nurse and reviving me. Thank you for being home that day, Mom.

Mary: She actually had to do CPR. Yes. Wow. Was that a part of your epilepsy or is that a part of like a drug interaction?

Rachel: Well, it is part of epilepsy. But the drugs caused it and it's happened again without the drugs. I've had near-death experiences when I've had seizures and I've just I've had grand mal seizures, petit mal. I've had staring episodes. I pretty much had everything. But I think that I've been doing a lot better now that I'm older.

Mary: Yeah. Yeah. And it said on your website that you also had allergies to dairy and gluten. Where were those, oh, those were temporary.

Rachel: I really don't know where that came from because I love chocolate ice cream and everything. I eat a lot of dairy and I just don't know what happened. But I had a temporary dairy allergy when I was in the fourth grade and I just couldn't eat dairy. And this happened for a year. But this gave me a lot of empathy towards people who do have allergies. And I was like, Mom, this is terrible. I don't want this anymore. But we found a good health food store and I found a lot of good substitutes. And this encouraged me to eat healthier. Yeah.

Mary: So now are you on a regular diet or do you have to have some dietary restrictions?

Rachel: I'd say that I'm on a pretty regular diet, but I eat as healthy as possible. I'd say a lot of substitutes like pasta. I have whole wheat and veggie pasta. I don't have the normal one because that's too many carbs. And I really like Greek yogurt because they say that's healthier. I mean, I really try, especially when you're in pageants and modeling. They really want you to eat healthy.

Mary: Yeah. Yeah. So let's talk a little bit more about epilepsy. So are you on epilepsy medicine or are you. I know you had talked on your website about CBD oil. So what is your treatment for epilepsy and is it still ongoing?

Rachel: I am on the standard epilepsy medication. I take pills for it. It's called carbon amezepine. And I take so many pills, it's hard to remember all the names of them, but that's one. However, CBD oil has helped me with my seizures and also with stress as well. And I mean, I really recommend it. I think people should stop being afraid of CBD or just get rid of this stigma. Oh, wow. It's weed. We shouldn't. No, because there's a lot of benefits to it. It really helped me with my stress when I was at school. It helped with my seizures. I was seizure free for six months. And it's just been amazing.

Mary: So when you were in middle school and high school, did you experience bullying and that sort of thing? Is that what led to depression?

Rachel: Yes, I'd say so. I think it all led up to that because I was bullied when I was much younger. It was because I was different. But it all gets worse in middle school. Right. So I went to a really, really conservative Christian school. You know, the Pentecostal ones. Yeah, it was like that. And everyone has their own little clique. And if you don't fit in, then you're outcast. And my parents were sold the idea that I was going to be taken care of because I had autism. But it was kind of like segregation in a way. And everyone just sort of treated me like I was a black sheep. And that's sort of contributed to my depression. And I had that up until college.

Rachel: I always felt like it was my fault. Like I am the one that was annoying. I didn't fit in. I'm the devil. I was called the devil. But it was I've been learning to let go. It isn't my fault. There's people that care about me. And I've even got e-mails from people that went to middle school saying that I was really a great person. They didn't know what they were doing. And that really warms my heart when people change. And I don't know, it's great because I know I did great things. I still remember being bullied, but I would draw little cartoons and I put them on my bullies' lockers and they'd say things like, I love you. You're gonna do great today. And I think they recognize that.

Mary: So you had even a depression to the point where you've had suicide attempts. Is that is that a long time ago or what age were you when you were actually tried to commit suicide?

Rachel: That was a long time ago. It started when I was 12 and I didn't even know what why I was doing it. I just knew that I wanted to wrap a belt around my neck. And I even told my parents I want to do it. And I did it today. And they knew something was wrong. And I was hospitalized because it didn't help that I was on another bad pill. Well, there's a lot of trial and error medications when it comes to autism that just makes it worse.

Mary: Depression and seizures. And one really good episode of the podcast I did with Lucas's psychiatrist, who's also a father of a son with severe autism. His name is Dr. Michael Murray. And it's episode number twenty-eight. So MaryBarbera.com/28. It's a really fascinating interview with him. And I agree. I think there's way too much trial and error with medicines. And I do think that some of the medicines that were trying with kids with autism, whether you can speak like you or whether you're more impaired like Lucas, it is just dangerous. And one of the tests that Lucas had years ago and I don't know if you've ever had this, Rachel, but it's a it's a swab test. They just put a swab in them in your mouth and it's through Geno Mind or gene site testing.

Mary: And it basically takes your DNA and it runs tests for all different meds, including seizure meds, depression meds, anxiety meds. And I say cod, eggs and all this stuff. And it runs it through your DNA, basically. And it tells you whether a drug is in the Green Zone, meaning it would we would interact with your body pretty well in the yellow, which it might do well. But you have to watch out for certain things or in the red zone. And have you ever heard of a test like this?

Rachel: I have not, actually. I think I should take that.

Mary: Yeah, you definitely should. And one of the things we found out with Lucas is that before we got diagnosed with autonomic nervous system dysfunction, which was through Dr. Michael Murray, we had you know, he was getting upset and agitated and even aggressive for certain things if he get startled or to have pain. And so the pediatrician gave me like a script for Balliett, for instance, turns, and I really didn't use it. You know, maybe it used it once or twice. It didn't really do anything, you know what I mean? And it turns out when he when we got the genome mine swab test back, that the valium was in the red, but adavan, which is a med that's very similar, was in the green. So even Lucas, thankfully, does not have seizures that we know of.

Mary: So he's not on any seizure meds, but on his document, which is based on his DNA, which based on the drugs like I know if he did develop seizures, this would be the Med like or these five would be the meds because they're in the Green Zone with these five would be in the red zone. So I definitely if you're saying you're taking medicine for seizures, for depression, for whatever, now you have to be careful because this test through Gino Mind or gene site and that we we discuss it more in episode number twenty eight. It can be expensive, but it's covered by many insurances now. And so you just want to look into it so that you don't end up with like a four thousand dollar bill and be like well Mary Barbera told me that wasn't a very good idea. But now, I mean, he's had the tests like six years ago and now it's covered more and more.

Mary: And I think even as an adult, like. No autism. If you're on a heavy duty, if you're on meds. Especially with, you know, I have a friend whose daughter tried to commit suicide and she had major depression, she did was not on the spectrum at all. And I told her about the gene site genome mind testing. And she was just like, she got it. She had pushed for it. She got it. And turns out her daughter was on the wrong med. So and then once she switched it, now she's in college and doing well and that sort of thing. So hopefully that little tip help you. Rachel, maybe you can write that down, look into it, but, you know, talk to your mom about it. I'm actually also a registered nurse and a behavior analyst. So when I hear about moms that are nurses, I'm like ya! Go nurses.

Rachel: I think that's really damaging to give so much medication to kids whose minds are still developing. And that's really why I think happened to me. And if we could put a stop to that for the next generation and the next two and now would be amazing.

Mary: Yeah, yeah. As part of my mission for sure to get the word out that, you know, these disorders, these comorbidities don't have to, you know, don't have to be a part of autism. We need to treat things very early. We need to have a whole body. You know, we need to look at you at meds. We need to look at symptoms. And we can't just throw a bunch of meds or a bunch of supplements like kids, because supplements can also be tricky. So I did so I did a video blog on like basically are all meds good and all supplements bad? No, because I've had issues with both and you have to really know what you're doing. Otherwise, like you, you'll end up, you know, having other issues that come up. So yeah. OK, cool. So I know you are a beauty pageant winner. So how did you start in beauty competitions and like how is that been?

Rachel: Okay, well, I started since I was five years old and my mom just wanted me to come out of my shell more. And since boys are diagnosed with autism more than girls, I just really couldn't relate because I went to all these social skills groups. And I mean, I made friends with a lot of boys. And I like hanging out with boys that you can only put up with. Oh, do you watch Thomas the tank? Did you play Pokemon? For so long.

Rachel: And it's like I just want to be with the girls and that's all I wanted was the girls. So I entered pageants and I was in them until fourth grade because I wanted to focus on my studies schools very important to me. And ever since I got the depression, my friend, she told me you should do pageants again. You were so good. And I realized I loved being on stage.

Mary: Nice. So now what's your title now? Do you just?

Rachel: I am first runner up in the Miss Florida America Pageant.

Mary: OK, good. And so you're still competing and you're still.

Rachel: Yes, I'm Miss Tampa now, but I think I'm going to try next year.

Mary: Yeah. And on your website, you have a couple things that, like pageants helped you do. Like you got better at interviewing skills. You got better with, like poise and walking in heels or.

Rachel: Oh, yeah. Good interview. Really helped me with eye contact because you have to look at the judges and talk about yourself. And that's my favorite part of the pageant, because I get to be me. I get to talk about just myself and be real with people. And it's cool. It's like you're making friends and you get to meet friends outside of that. Oh, and talent. I love talent because I love to sing.

Mary: Wow. Do you take singing lessons?

Rachel: I did, but I haven't been able to because of COVID. And I'm still working on that.

Mary: I know a lot of people are taking virtual classes back. In fact with COVID, I guess I had it on my kind of bucket list to learn to play the piano. So. I am actually playing the piano now since Koban and I took a course and I've been working on that. So there is always a way to get your lessons virtually. Yes, I could probably hook you up with somebody. Some. Yes. So. So now you're in college. You're actually a senior in college. And how was the transition to college?

Rachel: Well, the transition was really nice. I mean, I just couldn't wait to go to college because, I mean, I liked high school. It was a little rough going from a really, really sheltered middle school to a public high school because my parents wanted to take me out of there, like, that's it, we're going to public school. And I was happy there. And then I was happy in college, but it was so big. I go to USF and the campus. I will admit I cried because I didn't know my way around. But then it got easier.

Rachel: And once you know where you're going and where your classes are, then it just becomes second nature because you have you have your major and then you have your set classes. You're not going to need the whole campus. It's just like a little sliver. And that's it. And then I was like, oh, this is OK. But now that it's all virtual, this is very convenient for me because I travel a lot.

Mary: Yeah, so does the University of South Florida. Do they have any kind of support system for young adults on the spectrum?

Rachel: Oh yeah. Tons. I made great use of that in my service dog. Harvest came to school with me the first few years, and when I was in a dorm, they really didn't have accommodations for him. So we went to the services for people with disabilities and he took part in a video that. Sort of brought awareness to people like us. And now they allow service dogs in the dorms.

Mary: Oh, wow. What age were you when you got a service dog?

Rachel: Oh, it was three years ago, I think.

Mary: So you were approaching college when you got the service dog? I did do an interview with a service dog person and the pet pets, pet therapy and service dogs. And I learned a lot and that because I was kind of clueless. OK. So you are on a number of boards and your mission is to spread autism awareness. And it sounds like you're doing an amazing job of it. So what's your general message to get out to the world?

Rachel: Well, my message is autism, acceptance, awareness, and that with all the comorbid things we have, we need to be more open not just with autism, but with suicide, depression. We shouldn't hide it because more often than not, people do. And that's really not healthy. We just need to share things because it's all right to do that.

Mary: Yeah. Yeah, that's great. So how can people follow your work?

Rachel: Well, I'm on a number of platforms. I'm mostly on Instagram. You can find me at Rachel Barcellona. Just my name. My Web site. W ww. Rachel Barcelona. Dot com or dot. Rachel Barcelona dot com. Sorry, I'm thinking of all them.

Mary: We could actually link all this in the show notes. So you're on Instagram, Twitter, Facebook.

Rachel: I don't really use Twitter. There's too much drama on Twitter. Yeah. Ever since Twitter got into politics, it changed, so I stop using it.

Mary: OK, so you're mostly on Instagram. You do have a Facebook page called Ability Beyond Disabilities.

Rachel: My page is amazing. Its Ability Beyond Disabilities on Facebook. Yes.

Mary: That's great. And I know your website is full of information about you, about autism, about beauty pageants, about how to raise acceptance and awareness. So I think that's awesome. So part of my podcast goals are for parents and professionals and people on the spectrum to be less stressed and lead happier lives. So do you have any self-care tips or things that you do to reduce your stress?

Rachel: Well, I always say that self-care is not selfish. And so many people think that it is. And what I like to do is just take time for myself. It can be anything just laying around, watching your favorite show. And I love to do that just from time to time. You can do that with your child, maybe watch what they like to do. And I know I've done that many times. If I had been artistic friend. They like to watch My Little Pony, for example. I'm like, I like that, too. Let's watch an episode. And that is self-care in case you're both doing the same thing that you like to do. And that is amazing.

Mary: Yeah, that's great. All right. Well, it has been a true pleasure to get to know you better. I know you're going to do great things in the world and help us come together as an autism community to really improve the lives of children and adults with autism nowhere, no matter where they fall on the spectrum. So thanks again for your time and all that you contribute to our world.

Rachel: Oh, no problem. I enjoyed it.