Episode 177: Apraxia Story – with Tessa McEvoy

The episode transcript is below.

Carolyn Kiel: Welcome to Beyond 6 Seconds, the podcast that goes beyond the six second first impression to share the extraordinary stories of neurodivergent people. I’m your host, Carolyn Kiel.

I’m really excited about today’s interview! My guest today is Tessa McEvoy. Tessa is autistic, has a speech disability called Oral Motor Apraxia, and was recently diagnosed bipolar. She talks about her experiences on her popular Facebook page, Apraxia Story. She also has a new book called “What is it like Living with Depression?” She advocates for autistic, bipolar, abuse survivors and apraxic individuals online.

Today Tessa talks about the difficulties she’s faced as a neurodivergent person, including being judged for her speech disability and experiencing emotional abuse from her family, and also how she shares her story to help people with similar experiences feel less alone.

If you agree that stories like this are really important to get out in the world, and if you’re enjoying this podcast, then I’d love to ask for your help in getting the word out about it. There’s a few different ways you can help!

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You’ll find all the links I mentioned in the show notes of this episode.

And now, here’s my interview with Tessa. Tessa, welcome to the podcast!

Tessa McEvoy: Thank you so much for having me on.

Carolyn Kiel: So everyone’s on the same page, what is Oral Motor Apraxia?

Tessa McEvoy: That is a really great question. Oral Motor Apraxia is a speech dis, is a speech disability that, that keeps your words, that keeps your words from, that keeps your mind from forming words correctly.

And it’s, and it can be really hard to have conversations because by the time you’re able to speak, people have already moved on. And also because of my speech, my speech disorder, people consider me less intelligent and therefore innocent. So I’ve been definitely infantalized along with treated as way younger, like treated as a child rather than a young adult.

Carolyn Kiel: Yeah, that sounds really frustrating. And I think it’s great that you’re helping to raise awareness online and bring a lot of people together who have apraxia or know someone in their lives who has apraxia and, and also people who are autistic. Because you’re, you’re also autistic as well, so there’s a community out there too.

So what inspired you to start sharing your Apraxia Story online?

Tessa McEvoy: Back in 2020, I was on study abroad and I, I loved study abroad. I thought that I was gonna have a great trip since I just got done with pre 20th century art history. And the program was like about, revolved around drawing in Italy. Where we studied, like where we studied pre 20th century Italian art. And that actually immediately circled me, circled me right in.

Little did I realize that I was on, that I was destined to a nightmare trip. When I arrived in Italy, the airline lost my suitcase. My teacher asked, my teacher told me, “Tessa, do not tell me that you lost your suitcase.” And I began, and I actually began crying because like my teacher was like scolding me, even though I told airport security where my suitcase was. And I told, and I told it the, the place I was staying that my suitcase, that my suitcase was lost and that it should be arriving. The teacher was not having it. So I spent the next, the next day stressed out because I did not have my art supplies or like or the things I wanted from my suitcase.

The next thing I know, my teacher is saying, “Tessa, if you fly back to the, if, if you can fly back to the United States tomorrow, would you?” I’m like “nope, I’m staying in Italy because I’m actually enjoying the program.”

The teacher said, “well, it doesn’t seem like you’re very capable because you don’t, because you don’t seem able to read a map very well.” And I’m like, “no, I have my phone and I have Google Translate.”

“Like, well, what if you lose your phone?” And I’m like, “I speak enough Italian. I speak enough Italian to read a map, and even if it takes me slightly, slightly longer, I’m able to get back to my apartment.”

“Well, you don’t speak Italian.”

And so next thing I know, I was kicked out of Italy because I believe my teacher considered my speech disability a safety hazard, and she did not like that I was eating, that I was, I was eating gluten in Europe, even though, even though at the time I was gluten free in the United States.

So, long story short, that’s why I started Apraxia Story, because I was mostly depressed.

Carolyn Kiel: Yeah, that sounds rough. And I know you share a lot of, you share a lot of personal experiences that you’ve been through and how you’ve struggled. And a lot of your struggles, including the one with the teacher, seems like really a lack of support in a lot of situations. Being in, in very difficult situations and just not having a lot of support, not having a lot of people understand your speech disability or being even the slightest bit accommodating to, to a lot of the challenges. Wow.

Tessa McEvoy: Yeah. And that teacher did, that teacher in that trip did give me PTSD.

Carolyn Kiel: Yeah. I can’t even imagine being in a foreign country and having, you know, facing those challenges.

Tessa McEvoy: I was actually kicked out of that program within 48 hours of landing.

Carolyn Kiel: My God. So then you were, you were back home and at that point decided to start sharing more about your experiences there. And did you start on Facebook sharing those? Was your Facebook your first place?

Tessa McEvoy: I started on Facebook sharing. Originally my Apraxia Story was just going to be about the, the realities of being an apraxic individual. Then I actually really started tying in autism, and like you’re tying in like how autism and apraxia interplay, like for me personally. Then because of the pandemic, I did realize just how abusive my household was. So I actually started tying in what it’s like to be a dis, an abuse survivor with two, with disabilities.

Carolyn Kiel: Wow. Yeah, and I think it’s important for stories like that to be shared because I think, you know, many other people are in similar types of situations. You know, a lot of people with disabilities unfortunately, are even more vulnerable, especially during the pandemic when everybody’s kind of stuck in the same place, in the same situation. And yeah. Wow. So that is important for people to hear those stories.

You mentioned you have apraxia, you’re also autistic, and I know you kind of struggled really with both, it sounds like, growing up your whole life, just not really being understood or supported. And that is a lot of what you talk about on your page as well, is that correct?

Tessa McEvoy: That is correct. And what you’re saying is really true because as an individual with disabilities, there’s people who actually said to me, “Tessa, you need to learn, you need to deal with tough love. This is your family. You only have one family.” And my family actually went as far as to tell me, “Tessa, you are depressed. The abuse is all in your head.” Even after years of getting my needs denied and the fact that, after I explained what was going on to my extended family, they still took my abuser’s side.

Carolyn Kiel: Wow. Yeah. That’s really, that’s scary, honestly. So yeah, yeah. Wow.

You share a lot of those stories very candidly. And you’ve also been building a community through Facebook and you have a livestream show that’s related to your Facebook page as well called Apraxia Peeps where you talk to people who also have apraxia, or are autistic or have other disabilities to learn about their experiences as well. What kind of responses have you received from people who are either reading your posts on Facebook about your experience or watching your videos?

Tessa McEvoy: That’s a really good question. To start, with my Facebook posts, I’ve been getting a lot of mixed response. I’ve been getting responses with people saying, “oh my gosh, I can totally relate to autism and apraxia.” And I’ve also been getting posts saying, “Tessa, I came to your page just to see your apraxia posts. Why are you trashing your mother?” And then there’s like another third type of post that says “Tessa, you were never abused. You are bipolar and you’re going crazy. Why should we ever trust somebody who is bipolar? And to top it off, you have a speech disorder. So I’m not sure who to believe, you or your mother.”

Carolyn Kiel: Wow. And that is something that is a concern for people who are neurodivergent, who are bipolar, who have speech disabilities, is that a lot of times, people assume that you’re either not trustworthy or somehow just not reliable or not aware of reality, and for some reason you’re not believed when things happen to you.

Tessa McEvoy: It is definitely a sad reality. Especially like sometimes I really fresh out in my situation and the fact that my mom, I won’t say in detail specifically, but the fact that my mom is a really high up professional, that does intimidate me. That does really intimidate me.

That’s why for the longest time, I did not share very much of what was going on, but I realized that if I stayed quiet, that other people may end up suffering, may end up having to suffer in silence. And I just find that by telling my stories, just by being as open as I feel comfortable to, that it does empower others to say, especially adults with disabilities to say, “I have the power to stand up to my abusers.”

Carolyn Kiel: You talk about this on your page about facing abuse from your family, and also taking a stand and moving away and really starting to break off those relationships or at least distance yourself from the abusive relationships. So, are you at this point kind of distant from your family or detached as you’re in a safer place?

Tessa McEvoy: Yep. I’m distant and detached. And the hard thing is that there’s people who actually are trying to defend my family and say, Tessa, and they’re like saying Tessa, literally like implying, “Tessa, we miss when your posts were more innocent and when you just like posted happy cartoon drawings, and just happy memes.” But now since I’m really talking about my reality, I do find that people tend to be way more critical since like, it’s like definitely hitting knobs.

Carolyn Kiel: Wow. Yeah. Some people just can’t deal with reading that and being exposed to that, but it’s still really important. I mean, it’s real! It’s your real life and you have an absolute right to share what’s going on in your life. And I believe people really benefit from hearing what you share about your own experience, because I’m sure there are other people out there who can relate quite well to parts or all of your experience.

Tessa McEvoy: Yes. Another thing I get like a lot of backlash on is the fact that I’m adopted from China, and that in the United States, there’s this culture around how adopted children should be thankful for their mamas — especially the mamas or your parental figure and how adopted kids should be thankful for their adoptive family and forever be grateful no matter what your family does. Because your family literally in the airport “saved you” from the bad realities of your other country. Which I find the more I think about it, really disturbing within itself.

Carolyn Kiel: Yeah. That’s a tough situation to be in as the person who’s adopted and feeling like you have to be grateful regardless of how your family treats you. That’s a tough place to be. Wow.

Tessa McEvoy: It really is. And I was even told by one of my family members saying, “you know, the only person who knows you for 22 years is your mama. And you’re literally like your mama’s arm. You’re like your mom’s appendix and your mom needs you in her life right now. Right? You need to get back with your mom.” Even after I told them what was going on and why I was no longer wanting anything to do with her.

Carolyn Kiel: Trying to guilt you into going back with that relationship.

Tessa McEvoy: Lots of guilt.

Carolyn Kiel: Yeah.

Tessa McEvoy: And they said, “because you’re very unique,” like implying disability, “your mom is the only one who can really save you from yourself.”

Carolyn Kiel: Ugh. That’s gotta be hard to constantly hear that language around you echoed by your family.

Tessa McEvoy: It really is, and that language has definitely taken a prominence on my Facebook page too, which is why sometimes I find it so hard to go online.

Carolyn Kiel: Yeah. That’s gotta be tough.

Tessa McEvoy: It is.

Carolyn Kiel: Wow. Yeah. So, yeah, I mean, when you post, even with the lighthearted posts, but also with the tough, difficult posts, you usually have an illustration that you do along with that — usually of you in some sort of scenario that helps put together and illustrate the point of the post. So it’s obvious from anyone who’s been on the page for even a couple seconds that you have a real talent for drawing as well as for writing. How long have you been drawing or illustrating like that?

Tessa McEvoy: Thank you, thank you so much for asking. I have been illustrating since I was five years old. Not sure what it was, but there was like something that just really clicked with me and drawing, and ever since then I’ve been drawing up to three hours a day. That’s what got me really into illustrating and for writing. I actually had a pre 20th century art history one teacher who actually taught me how to really write and refine my vocabulary. That’s when I really got into writing was after that class.

Carolyn Kiel: That’s great. Yeah. Speaking of writing, you also just published your, I think it’s your first book. You’ve got a brand new book out right now. And I think it also has illustrations that you’ve done in there as well. Is that correct?

Tessa McEvoy: That is correct. I’m actually beyond excited! I still can’t believe that I actually published my very first book! Not my very first book, but my very first book where I did it, both where I came up with the concepts, the writing and the illustrations on my own. I’m just so glad that this book is actually done by me. And I just wanted that, and I’m just beyond thrilled that I did not have any help from family on this book.

Carolyn Kiel: Tell us about the book. It’s called, “What is it like Living with Depression?”

Tessa McEvoy: So this book is about what it’s like living with depression and like how I can suddenly go from feeling super duper happy to kaboom!

Carolyn Kiel: Mm-hmm.

Tessa McEvoy: I just feel downright miserable. I can barely move. I go catatonic. And the book’s about how I deal with advice and what I do whenever somebody tries to tell me to journal, to do yoga and to do meditation, which is very common advice to hear. And my main point, the point of the book is like sometimes that you just need a listening ear without any advice attached.

Carolyn Kiel: Yeah. Absolutely. How long did it take you to write the book?

Tessa McEvoy: It actually took me a week to start and finish, including illustrations and formatting and stuff before I sent it off to the formatter. I actually watched an entire season of this Netflix show called Blown Away, where I just sat there on my iPad doing my entire book for a week.

Carolyn Kiel: Oh wow, that’s amazing that you wrote it in, in a week! And illustrated it in a week! That’s so cool.

Yeah, the focus I guess from the title is mainly around depression and your experience with that. But you were recently diagnosed as bipolar, and I know you started to write posts about what manic episodes feel like for you as well. I know the diagnosis of bipolar is pretty recent, but did getting that diagnosis explain things or was the realization that like, oh, these feelings I was having were manic episodes in addition to the depression? Was that a new realization?

Tessa McEvoy: It was actually both. I was like, finally, I have a diagnosis to explain what was going on. And at first I was downright shocked. I did not think of myself as bipolar. The doctor did point out that I talked really fast and that I would spend hours every day journaling and writing and producing a lot of art in the psych ward.

And then I thought back when I was younger, like around five years old, or around eight, I’d actually spend like five hours a day just sitting there drawing nonstop. And my ideas kept coming up so fast that I did not have any time to add color. So the mania does explain why I produce art so quickly in high volumes.

Carolyn Kiel: Wow. Yeah. So it’s good to have at least those answers in that context and understand why things work out that way. Wow.

Tessa McEvoy: Yes. It was just like really eye-opening.

Carolyn Kiel: Yeah. I bet. Wow. So, yeah, and that is really exciting that now you’ve got your book out! I’ll put a link in the show notes so that people can order it from Amazon. Is that the best place to get it, on Amazon right now?

Tessa McEvoy: That’s the best place. And I also want to have an absolutely huge shout to SLP Mommy of Apraxia and Dyspraxia because she was the one who actually helped me get the book uploaded due to the fact that I don’t have a laptop. And I just can’t thank her enough just for like all the help and support in the process.

Carolyn Kiel: Oh, that’s great. You’ve been through so much and you share so much of your story so honestly and candidly, and I know people are out there finding comfort and realizing that they’re not alone when they read your experiences.

I don’t know if you would have any advice or counsel for people who are resonating with your content?

Tessa McEvoy: Yeah. To start with, I’ll start with apraxia. Apraxia can be one of the hardest ones, I find. For me, apraxia is the hardest one because of how people often judge me for my intellect. And the fact that I really struggled to make friends made me even more isolated and more likely to be abused.

So with apraxia, I find it so hard to make friends or any connections in the world, because instead of getting to lead with my strength, I’m leading with my weakness: my voice. So, yeah, my best advice would be just to not sugar coat anything. I do find it really hard, like whenever I have somebody telling me, saying like, “it’s gonna be okay! It’s gonna be okay! You can get through this!” I do understand that I will eventually get there, that my speech will eventually improve. Yet it’s so hard because it’s still really hard to communicate as of now. And it can, and sentiments can be honestly just like downright depressing within themselves. So it’ll be like, years of fighting to get the support you need. There’s a lot of rejection and isolation.

Carolyn Kiel: Yeah. And then in terms of people who have people in their lives who have apraxia or any speech disability really, it sounds like, I guess I would counsel people to just be patient. Because I would imagine it’s really frustrating if someone’s trying to finish your sentences or, as you were sort of just demonstrating now, trying to comfort you and you’re just trying to talk! So I don’t know if you have any sort of counsel for people like, how you would want people to behave or give you space when you’re speaking so that it’s easier for you to communicate verbally?

Tessa McEvoy: Yeah. What I would like is for people to know, is for people to actually give me enough time to even like, repeat myself. And that I will eventually get to the point. I’ve actually had teachers in classrooms cut me off because I was saying the same thing three times, trying to get to the, to my main point.

And another thing is just to understand that even though my voice may come off as immature, that I’m still able to understand and process everything that’s going on. And I still do have needs, desires, wishes, and wants in my life.

Carolyn Kiel: Yeah, that’s good advice and I hope more people do that and give that space. Absolutely.

Do you have any other big goals around your online advocacy or even around your art or your writing?

Tessa McEvoy: Yeah. My, my biggest goal right now is to market my book and my online advocacy because I just like bringing and sharing my story to others, it’s such a great feeling. And I want to help, and also want to help others break down stereotypes of bipolar, autism and apraxia. I also want to help de-stigmatize. I also really want to help other abuse survivors know that the stories are true even if people label them as manic, depressed, and even if people say that the stories are invalid because of the mental condition, I want people to be able to walk away knowing that the stories are true and that the reality is valid.

Carolyn Kiel: Yeah. That’s really powerful and will help a lot of people, especially a lot of people who are in very difficult situations. And it’s just good, as you were saying earlier, to have someone who can listen to you and truly listen, and just be able to talk freely without feeling like you’re gonna be interrupted or judged or anything like that.

Tessa McEvoy: Yes.

Carolyn Kiel: So what’s the best way for people to connect with you? Probably your Facebook page is the best place for people to find you. Is that right?

Tessa McEvoy: That’s correct. The best way to contact me is Apraxia Story. A P R A X I A Story. Apraxia Story.

Carolyn Kiel: Okay, cool. I’ll put a link to your page, the Apraxia Story page in the show notes so people can click on it and they can find it there that way too.

Tessa McEvoy: Thank you so much.

Carolyn Kiel: Thanks again Tessa for being on my show. Is there anything else that you’d like our listeners to know or anything that they can help or support you with?

Tessa McEvoy: That’s a really great question. What I wish for people to know is that somebody’s disability does not determine their intellect. And even if somebody presents, like in air quotation marks as “something different,” or the person acts in a way that you from your upbringing may not be used to, is to please respect that they’re human. Please know that they’re trying their hardest and please not automatically assume that they’re on drugs or some substance. Because that’s a really harmful stereotype, especially if law enforcement gets involved. That’s actually one of my fears is somebody mistaking my rocking, my flapping, my chanting as if I’m on drugs, and getting the police called on me and arrested. That’s actually one of my biggest fears about going into public.

Another thing I wish people to know is that even if I do sound in quotation marks “young” for my age, that I’m actually able to think for myself and therefore I should be treated as an autonomous, independent adult.

Carolyn Kiel: Yeah, absolutely. It’s important to realize that sometimes disabilities look like other things, and it’s not, you can’t make that assumption.

Tessa McEvoy: Yep. Yeah, I just find it really saddening how sometimes I see people actually laughing or pointing at somebody, and it actually really hurts my heart because throughout my entire life, I have been bullied, laughed at and pointed at. And that’s why I have such a hard time making any friends.

Carolyn Kiel: Yeah, that happens way, way too often with kids and adults and there’s really no excuse for that. I’m sorry that that happened. It wasn’t right. And I’m glad that you have now a community of people. I guess that’s one good thing about the online world is that we can connect with more people who maybe have a more shared understanding or just different abilities to empathize…

Tessa McEvoy: Yes.

Carolyn Kiel: …and listen to us. Yeah, absolutely.

Tessa McEvoy: Definitely. Yeah. And the online world has really opened up a lot of new friendships. And just being able to connect with people online really just keeps my spirits up. Even in spite of the trolls. And in spite of people blatantly denying my abuse. There’s so many good things that happen online.

Carolyn Kiel: Mm-hmm. And your Facebook page is one of those good things that’s bringing a lot of hope and connection to people. So yeah, thank you for all of the work that you do and your advocacy and sharing your creativity and your story with all of us online. So thank you for that. And thanks for being on my show! I really, really enjoyed talking with you.

Tessa McEvoy: You are very welcome. And I really appreciated getting interviewed by you.

Carolyn Kiel: Thanks for listening to Beyond 6 Seconds. Please help me spread the word about this podcast. Share it with a friend, give it a shout out on your social media or write a review on Apple Podcasts or your favorite podcast player. You can find all of my episodes and sign up for my free newsletter at beyond6seconds.net. Until next time.