Cover Image - Autism & Body-Focused Repetitive Behaviors | Spectrumly Speaking Ep. 140

Autism & Body-Focused Repetitive Behaviors | Spectrumly Speaking ep. 140

 

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IN THIS EPISODE:

In this episode, hosts Haley Moss and Dr. Lori Butts speak with autism & body-focused repetitive behaviors (BFRB) self-advocate and 2023 Ultimate International Miss Pennsylvania Sarah M. Pennington. Sarah is 24 years old from the suburbs of Philadelphia, Pennsylvania. She has a BFA in Film & TV from the Savannah College of Art & Design with the hopes of becoming a well-known documentarian. In 2021, Sarah finally received confirmation of her ASD diagnosis. With the help of her service dog, Daisy, Sarah has learned to love herself, autism and all. Today, Sarah competes in pageants to continue advocating for those dealing with psychiatric and invisible disabilities.

For more about Sarah:

@sarah_m_penn

@uim_pennsylvania

 

—————–

Spectrumly Speaking is the podcast dedicated to women on the autism spectrum, produced by Different Brains®. Every other week, join our hosts Haley Moss (an autism self-advocate, attorney, artist, and author) and Dr. Lori Butts (a licensed clinical and forensic psychologist, and licensed attorney) as they discuss topics and news stories, share personal stories, and interview some of the most fascinating voices from the autism community.


Spectrumly Speaking is the podcast dedicated to women on the autism spectrum, produced by Different Brains®. Every other week, join our hosts Haley Moss (an autism self-advocate, attorney, artist, and author) and Dr. Lori Butts (a licensed clinical and forensic psychologist, and licensed attorney) as they discuss topics and news stories, share personal stories, and interview some of the most fascinating voices from the autism community.

For more about Haley, check out her website: haleymoss.net And look for her on Twitter: twitter.com/haleymossart For more about Dr. Butts, check out her website: cfiexperts.com

Have a question or story for us? E-mail us at SpectrumlySpeaking@gmail.com

CLICK HERE FOR PREVIOUS EPISODES

 


EPISODE TRANSCRIPTION:    

 

HALEY MOSS (HM): 

Hello, and welcome to Spectrumly Speaking. I’m Haley Moss, an author, attorney, artist, and I’m an autistic advocate. I’m joined here by the one, the only, the co-host of Spectrumly…

 

DR LORI BUTTS (LB): 

Hi, I’m Dr. Lori Butts. I’m a lawyer and a psychologist.

 

HM: 

How are you doing?

 

LB: 

How are you?

 

HM: 

It feels like we just jinxed each other there at the same moment. I am hanging in there. I feel like the time just keeps on flying by.

 

LB: 

It certainly does. That’s how life — and the older you get, the faster it goes. So just be prepared.

 

HM: 

There are days I wonder where the day went and then there are weeks that I wonder where the weeks went. And now I keep thinking how is it not 2019 version 800 I feel like in my head, my heart is still stuck in 2019. Kind of awkward.

 

LB: 

Yeah. I think I’m stuck in the 1900s.

 

HM: 

Hey it happens to the best of us. It’s okay. I have faith in us though.

 

LB: 

I do too.

 

HM: 

The time keeps going. We keep get getting older and the new generation of advocates and young people and everybody else keeps showing up. So that’s also pretty cool.

 

LB: 

It’s very cool. It’s very, very cool.

 

HM: 

Our guest today is someone that I actually consider young people. So, are you ready for us to welcome our guests to the Spectrumly stage?

 

LB: 

Absolutely.

 

HM: 

So today we are introducing y’all to Sarah Pennington. And Sarah is 24 years old and from the suburbs of Philadelphia, Pennsylvania. She has a BFA in film and TV from the Savannah College of Art and Design with the hopes of becoming a well known documentarian in 2021. Sara finally received confirmation of her ASD diagnosis. With the help of her service dog Daisy, Sara has learned to love herself, autism and all. Today, Sarah competes in pageants to continue advocating for those dealing with psychiatric and invisible disabilities. Welcome to the show.

 

SARAH PENNINGTON (SP): 

Thank you so much. I’m so excited to be here.

 

HM: 

I’m so excited for you and that you are joining us today. So as I mentioned, when introducing you, you were diagnosed just a year ago. Can you tell us a little bit about your journey to receive that diagnosis and what sparked that conversation?

 

SP: 

Absolutely. So it’s, it’s been a long time coming, which I think a lot of people who get diagnosed as adults with ASD can relate to. It’s actually very interesting, because the first time it was mentioned, it was mentioned to my parents when I was seeing a psychiatrist for completely different reason, at the age of 13. And my parents were like, Yeah, we don’t really see that. And we also don’t really want to add that onto the modge podge of medical issues she’s currently dealing with. So it was kind of that was the end of that, except for that doctor ended up adding that diagnosis to my chart. Guess he didn’t tell my parents that he did that. So several years later, when another psychiatrist was looking at all my medical info from the past. He’s like, Hey, what’s this about me? My mom was like, Yeah, about that. But again, even that psychiatrist like my parents had been was like, I really don’t see it. So not really. It came up again, after I graduated high school, and my mom mentioned that she had kind of been re evaluating her position on the whole thing and said, You know, I’m starting to understand female autism more. And so I, I’m taking a different stance, and I think you probably do have autism. And so I kind of went through several years of like, am I autistic, am I not autistic? And then finally, I was coming to terms with it. And I was really finding myself within the community, especially the Instagram community. And so I brought it up to my therapist. And the first time I brought it up, she said, You know, I work with a bunch of people with autism. My brother has autism. You’re not autistic, like I don’t see it and just the same response I’ve been getting for years and years and years. But this time around, I felt it and I knew in my heart that this It made sense. So I brought it up again. And I came back with facts and kind of laid it out. And she said, you know, the longer I’ve been working with you, I really do see it. And she kind of confirmed it for me. And that was the last straw of saying, Yes, I am autistic, I finally have a diagnosis, I have confirmation. And she even said, you know, you’ve changed my perspective, and really brought me to understand females with autism, and how it manifests in a different way within different genders and things like that. And so it was very, very long way of getting diagnosed. But now that I have it, it’s been very, very powerful and very helpful. And really understanding my brain and how I work as a human being.

 

LB: 

It’s been — it sounds like it’s been a really positive, positive impact, positive journey. Can you describe that a little bit more? I’m not able to articulate my question very well, right now. But just listening to it just sounded, you know, cuz some people can find that, you know, very negative way. But it just sounds very positive for you.

 

SP: 

I’ve had years to kind of process it. And I think when we finally got that final confirmation for my therapist last year, that was, that was at that point, when I was able to say, Yeah, this is positive, because I had done a lot of research. And I had gone into the community a little bit and heard stories from other people showcasing that this wasn’t a negative in the way that it’s often stereotyped. It’s more of a way of life and way of viewing the world. And when I understood that aspect of it as being a way to understand my brain and how my brain works, it became hugely positive. And one thing that I think I’ve seen the most impact with is in like, relationships, especially with my boyfriend, who I’ve been dating for several years now. And when I first brought it up to him, he was like, you know, I don’t have a lot of experience with autism. So okay, I don’t really think it changes anything. But the more I talked to him and said, This is why I do those things that you don’t fully understand. He was like, Oh, my gosh, you’re not only still Sarah up, but you’re Sarah and I understand why you’re Sarah so much better. And that has really brought us so much closer, because things that used to be barriers are now just kind of the way my brain works. And to have him understand me has been instrumental really helpful.

 

LB: 

Makes a lot of sense. Makes a lot of sense. Shifting gears very much: what got you interested in competing and in pageants?

 

SP: 

That’s a great question, because it’s not something I would have seen myself doing. You know, when I was like, in elementary school, I don’t come from a family of admin people like at all so it’s kind of out of left field. But I love the stage. I did a lot of theater in middle school, I love glitzy dresses. So those aspects of it were always appealing to me. But the pinnacle came when I started getting really heavily into advocacy work. At this point, I didn’t have my autism diagnosis. So I was working more with general mental health, anxiety, depression, things like that. And a friend of mine who does compete in pageants, said, Hey, I see all this advocacy work you’re doing, I think this is be something you like, and the fact that you’re so heavily involved in your community will help you tremendously in the pageant world, because there are a lot of pageants very heavily based on community service and making a difference in your community. Say, give it a try. So I looked into it, I decided what the heck can’t hurt, competed and won. And I was absolutely shocked that that happened. And then I kind of got the pageant bug and we are here. Six, seven years seven now seven years later.

 

LB: 

Wow, seven years. That’s amazing.

 

SP: 

It’s a little crazy to think that it’s been seven years but yeah, you just keep going and you keep learning more about yourself. One of the things that people don’t realize is a lot of pageants have interviewer which is instrumental skill in any sort of job interview, not pageant related at all, but I realized that I was bettering myself for long term reasons as well. And so that kind of fueled it to continue going and I just enjoyed it so so much.

 

HM: 

That’s awesome. And it sounds like such a great way to both develop the skills and also kind of practice getting out of our comfort zones because sometimes I think, especially as autistic people that can sometimes be really difficult.

 

SP: 

100% Yeah, it’s it’s, it’s amazing how far I’ve grown, especially when it comes to things relating to my autism and I know I think my dad likes to point out the most because he’s not able to make every single patch. And he’s often either working or can’t travel with me and my mom when we go, so he only gets to see like, maybe one pageant a year. And so he sees probably the biggest change, because he’s only seeing one one per year. So he sees how much I change over time. And he gets very emotional. Because I’ve been coming into my own, I’ve gotten more comfortable on stage, I’m able to just be Sarah and enjoy myself and relax and not worry about all those things that were keeping me very tucked into myself before. And it’s, it’s been so great.

 

HM: 

That’s absolutely fantastic. And I know pageant does also have its own communities. And there’s sort of like, almost a sisterhood with it. How receptive have you found that pageant community to be receptive of your message?

 

SP: 

I have, I would say, overall, it’s been a very positive reception, I’m not going to, like tell you, every single person in the entire world is open to change, because that’s not true. But it’s definitely been very, overall very positive. Because I think those everyone and that are most everyone in that community is working towards some kind of communal change, whether it be with domestic violence, or with mental health, or with animal shelters and getting animals there a correct care. I mean, there’s such a variety of different things that people can be passionate about. This just happens to be mine. And because it relates back to such a personal story, people really can connect that to their own lives and how they see things that have held them back and maybe opportunities for them to let things go and come into their own.

 

LB: 

Well, we here at Spectrumly love dogs, and so I’m dying to know about Daisy.

 

SP: 

Oh, yes, she is my little baby. I actually got Daisy in 2016. So she’s almost as old as my pageant journey, which is really funny. Completely unrelated. But yeah, she is a medical alert dog. She as I’ve gotten more diagnosis with her, she’s become more useful, which was really funny. But she’s a she’s a rescue that we got actually from Georgia. And she’s about 40 pounds very, very dark brown. She almost looks black and the correct lighting. She’s the biggest sweetie you will ever meet. And she has traveled with me all over the country. As I’ve done tons of advocacy work. She has been on cruises. I mean, the dog is an amazing, amazing traveler and my my best buddy and I absolutely love her

 

HM: 

Has she won any pageant titles too?

 

SP: 

So she’s, she doesn’t compete with me a because I don’t really need her in those moments. I’ve gotten very comfortable but be she would hate that she is not a stage dog. I’ll be quite honest with you. But we do often have like sashes, especially in systems that have younger division. So like girls who are still interested in goals, they often have pageants that are doll size, so I always modify those sashes and give Daisy her honorary title. So while she’s never been crowned on stage, it’s semi official.

 

HM: 

I had a feeling.

 

SP: 

Oh, yeah. Oh, yeah.

 

HM: 

Well, I think it’s safe to say at least in our universe here at Spectrumly we would happily crown her Miss Spectrumly Speaking.

 

LB: 

Absolutely.

 

HM: 

If we ever had a live show. I think she would definitely win.

 

SP: 

100%

 

HM: 

So that would be a first.

 

SP: 

Oh would be great. There you go ideas for the future you never know.

 

HM: 

And if she ever becomes famous on her own, then she can add that to her resume.

 

SP: 

Love it. Yes.

 

HM: 

So you are doing all this really cool advocacy work and you are on your journey with doing documentaries and other cool stuff. How can we find out more about you and what you’re doing and follow along?

 

SP: 

So the best way to follow me is definitely on Instagram. If you want to follow my personal journey it’s Sarah_M_Penn and then if you want to follow my pageant journey, I am currently ultimate international Miss Pennsylvania 2023. So you can go to my Instagram which is UIM_Pennsylvania. So U I M  underscore P E N N S Y L V A N I A. Pennsylvania’s a long word.

 

HM: 

Along with that I often have to mentally think through spelling.

 

LB: 

Me too.

 

SP: 

Thankfully, being born or raised after 24 years, I think I got it,

 

HM: 

you would hope. But we can never be too certain about a lot of things around here.

 

SP: 

It’s very true.

 

HM: 

Kind of transitioned a little bit, we like to do a segment here. And we wanted to talk about body focused, repetitive behaviors. And specifically, we wanted to chat more about awareness and inclusion within the autism community. For those of us with them, lots of lots of stimming is what kind of comes to mind for me. But Sarah, would you mind starting us off and telling us a little bit about your perspective here?

 

SP: 

Sure. So body focused, repetitive behaviors, I’ll give a quick definition. BFRB is the way you I will always talk about it because it is so much shorter. But it basically means a repetitive action that you do to your body. So I think the most commonly known one is nail biting. And I think that’s funny, because a lot of people don’t even realize it’s an actual disorder. But it also comes in the form of skin picking and hair pulling, I have hair pulling, which is probably my most prominent one. If you see me, I’m bold, and that’s why but I also do have skin picking. And it’s the first diagnosis that I ever really received in a more psychological diagnosis sense. And that kind of Launchpad in my journey into advocacy because I attended a conference with the TLC foundation for BFRB’s in one t 13. And that was the first time I met someone else who had a BFRB and I, for the first time understood, this wasn’t something that was just a me thing. This was a very, very widespread condition. And so when I realized that I really wanted other people to not feel alone anymore. And I think it’s a great thing to talk about within the autism community, especially because I think the comorbidity rates very, very high. And you know, that we just have similar brain functions, I think that causes us to do these behaviors. And so I am happy to you know, talk about it answer any questions. And that is something I have been talking about for years and years. So I’ll continue being very loud and vocal until everyone understands BFRB’s because it’s not something that makes you strange. It’s just a different way of processing the world.

 

HM: 

This is something that’s getting me thinking too, so I never really thought of it in that kind of perspective of this is an actual very separate sometimes thing. Even though I know sometimes it is such as when you talk about things like hair, Pauline’s skin picking but I am also someone who is a nail biter. And this is making me think so I really appreciate you mentioning this.

 

SP: 

Absolutely. It’s, it’s something that, well, again, it’s very strong within the autism community, it’s 100%, its own community is a very, very large BFRB community, they’re fantastic. And I will shout them out, because I love so many of them. But it’s, it’s often very well hidden, I think, more so than any other psychiatric condition that I’ve run into. Because we often chalk it up to habit versus being a actual disorder. And so people are like, Oh, it’s something that I can stop on my own, I don’t need to talk to my doctor, or I don’t need to talk to my therapist or psychiatrist about it. But if you’ve ever tried to stop pulling, picking or biting your nails, you know that just stopping is a not real. So I wish people understood that, you know, they don’t have to, quote unquote, stops, that it’s okay to do these things. You know, there are ways that you can lessen it. But if you occasionally pull picker by your nails, it doesn’t mean you’re a bad person.

 

HM: 

I think that’s a really great point, too, that it’s not a moral failure of sorts.

 

SP: 

Yeah, I mean, I think there’s so many people you could talk to about childhood traumas for lack of a better way of phrasing it about their parents saying you need to stop this and insert a situation where they’ve been put in, you know, gloves or with nail biting. I know there’s the nail polish and the thumb covers and the list goes on. And we can all relate to that because we’ve all been there. But again, it goes back to it’s not a habit. So it’s a lot harder to attack it than just those simple things that are In some literal cases, band aids,

 

HM: 

I was very curious Dr. Butts know what you’re thinking, because you are the psychologist around here.

 

LB: 

Yeah, you know, I don’t see many, you know, this isn’t come across my plate in my area very often. But I do think that what Sarah’s doing and making it not, not D stigmatizing and explaining and, and all these positive messages that she’s given a really important so that people feel accepted and that they can, there is a community and they can be accepted and get help, or you know, and not have to hide and feel ashamed about these types of behaviors. It’s always so important. And our guests are, so are at the cutting edge of, of this in their advocacy is bringing awareness and humility and beauty to what is, you know, used to be hidden and problematic and, you know, abnormal types of things. And it’s just, it’s, it’s lovely that you are able to do this and open up a world and find other supports. Nobody wants to feel alone and ashamed for something that they can’t help. Right. So anyway, that was a long winded thoughts about my brain. I’m thinking while you guys are chatting about this, but I appreciate Sarah’s work. Go ahead. Sorry.

 

SP: 

No, you’re good. Thank you. I I appreciate that point of view. And I think it’s interesting that this isn’t something you’ve come across. And I wonder if it’s not something you’ve come across because people don’t know, they should be mentioning it or ashamed of it?

 

LB: 

Yeah, I mean, I do, you know, in my clinical practice, a I don’t have you know, I don’t, but probably. I mean, what I what I see people are like, involved in legal cases and things like that. So maybe on the, in the grand scheme of things of what they’re working on, this might just be something that is not the biggest priority, because they’re focused on some other, you know, kind of legal cases, but maybe if they stayed with me longer that that certainly would be on the table. But yes, not a priority, or not something more something that is more medical in nature, I think like, like when it comes to hair pulling, right, you can’t, that’s something that you can’t hide, but certainly with the with the with the skin picking and the nail picking, nail biting and things like that. That’s so easy to fly under the radar. But also, but also, when I see people, they’re usually, unfortunately in crises in other ways. But that doesn’t mean that there aren’t lots of people that have this and and aren’t talking about it for sure.

 

SP: 

100% definitely an interesting conversations, multifaceted on many levels.

 

LB: 

Right, right. Absolutely.

 

HM: 

I’ve certainly learned a lot. And how can we within the Autistic community as well do a better job having these conversations? So you are very much a fantastic advocate on this. But I’m curious of how the rest of us can amplify or what we can be doing to make sure that we’re more aware because honestly, this is something I wish I had known more about before today.

 

SP: 

100% I think I think all around education is going to be huge in any kind of disorder. That means better awareness. But specifically what these conditions is, I think recognizing that it is a condition and it’s not a symptom, subset, whatever you want to call it of autism, it is actually its own separate condition. And that’s not a bad thing. Entirely saying, oh my gosh, now I’m adding another condition to my list. Me Like if he’s very scary, but um, I think it’s more of a mindset thing is, oh, there’s all this knowledge about these behaviors that I didn’t realize was out there until now and then, you know, diving into it, knowing more about it. I’ll go back to the TLC Foundation for BFRB’s is doing a ton of research about it. They’re fantastic if you want to just get the basics and like, know what’s up with all the medical world and then just joining the BFRB community online, where you’re finding your autism community. Now, I’m sure there’s probably a BFRB community just around the corner and just take a look and pop your head and say, Hi, I’m here and we’ll happily greet you.

 

HM: 

I think that’s a great note to wrap this discussion up on is all about community. And thank you for joining our community here at Spectrumly. And for all the work that you’re doing both in the pageant world outside of it on Instagram, everywhere else, so a huge thank you and appreciation for Sarah Pennington today. Please check out her Instagram as well. She mentioned that that she’s at let me let me just double check because I was personally looking at her Instagram earlier to make sure to follow her for you all is that she’s at Sarah_M_Penn. Looking forward to keeping in touch with her and all that she’s doing. Thank you again, as the rest of us, be sure to check out different brands.org and check out their Twitter and Instagram @DiffBrains and don’t forget to look for them on Facebook. If you’re looking for me I can be found at HaleyMoss.com or on all major social media.

 

LB: 

I can be found at CFIexperts.com and please be sure to subscribe and rate us on iTunes and don’t hesitate to send questions to spectrumlyspeaking@gmail.com. Let’s keep the conversation going.

Spectrumly Speaking is the podcast dedicated to women on the autism spectrum, produced by Different Brains®. Every other week, join our hosts Haley Moss (an autism self-advocate, attorney, artist, and author) and Dr. Lori Butts (a licensed clinical and forensic psychologist, and licensed attorney) as they discuss topics and news stories, share personal stories, and interview some of the most fascinating voices from the autism community.