Burnout. It’s a word that comes up often in society and is often synonymous with being tired and needing a vacation. But when it comes to neurodivergent folks, autistic burnout can look radically different and have long-lasting effects.
In today’s episode, Becca Lory Hector shares her experience of being diagnosed with autism as an adult after an extensive bout of autistic burnout.
She explains why her burnout occurred, what support she wished she had received, and what might have kept her from getting to that point, if only she’d had the language and framework to ask for the support she needed.
Becca also shares the life-long masking that led up to her period of burnout, and how parents can help to teach their neurodivergent kids the tools to advocate for themselves and hopefully avoid long periods of debilitating burnout.
She also shares what a workplace that doesn’t only include neurodivergent folks, but offers them truly belonging, would look like, and why this change is so necessary for our workplaces.
Becca shares so much of herself, and her insights are so enlightening for the parents of autistic and neurodivergent kids. Let’s jump in!
In this episode, you’ll learn...
[02:07] Gwen and Kristen recap their lives since the last episode and share their Rylanism and Grahamism
[09:54] An introduction to who Becca Lory Hector is and why she’s so passionate about advocacy
[13:07] Becca’s experience of receiving an autism diagnosis as an adult
[17:03] The way Becca’s autism presents, after masking for so many years
[22:10] Becca’s perspective on how parents can prepare their autistic children to advocate for themselves
[26:24] What autistic burnout is and how it presents differently than is often portrayed in society
[34:58] The support Becca wishes she could have received while recovering from autistic burnout
[43:16] Why our workplaces need to change and not just for those with neurodivergence
[48:21] The “B” in DEIB and why it’s crucial when it comes to making space for autistic folks in the workplace
[58:17] The Last Word
If you just can't get enough of us, don’t forget to join our newsletter and check out our other projects.
Resources for this episode…
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Meet Becca Lory Hector
Becca Lory Hector was diagnosed on the autism spectrum as an adult and has since become a dedicated autism and neurodiversity advocate, researcher, consultant, speaker, and author. With a focus on living an active, positive life, her work includes autism & neurodiversity consulting, autistic quality of life research, public speaking engagements, as well as, teaching her course, Self Defined Living: A Path to a Quality Autistic Life, and her related seminars. Becca has published multiple articles and books about life on the autism spectrum with the goal of spreading acceptance, building understanding, and encouraging self-advocacy. She spent four years supporting the autism community in the non-profit sector in her work for grass-roots organizations that provide resources and services directly to individuals on the autism spectrum, leaving only to open her autism and neurodiversity consulting business. An animal lover with a special affinity for cats, Becca spends most of her free time with her many animals, her husband Antonio, and their Emotional Support Animal (ESA), Sir Walter Underfoot. Sir Walter Underfoot travels, does woofing engagements, and has his very own Instagram to help share with the world his life as an ESA to an autistic adult.
Connect with Becca Lory Hector
Transcript for "Flipping the Lens: the Autistic Experience with Becca Lory Hector"
Gwen:
If you have an appreciation for honest and sometimes irreverent conversations about parenting and walking alongside neurodivergent humans, you are in the right place. I'm Gwen.
Kristen:
And I'm Kristen. And together we have decades of experience parenting, fiercely amazing neurodivergent humans, as well as teaching, writing, advocating, and consulting. All of this has provided us with an endless supply of stories of inspiring failures and heartbreaking wins.
Gwen:
Welcome to You Don't Want to Hug, Right? We promise to come at you each episode as our true selves sharing the hilarity and delight in the midst of the heart of our journeys. You'll also hear directly from our kids at the end of each episode.
Kristen:
Most importantly, we hope to remind you of your immense value as a human outside of the caretaking role you play. So grab a cozy blanket and a beverage and go hide in a closet nearest you. Morning friends.
Gwen:
Look at you. You're such a picture of perfection.
Kristen:
I'm in pink today. I don't usually wear pink.
Gwen:
I like it. I like it on you a lot. How are you?
Kristen:
Thank you. I'm really good. Just a lot of stuff going on, but I want to hear about your travels. You have been quite the traveler these past few weeks.
Gwen:
Yeah, I took Rylan to Las Vegas for a consulting gig that we're going to do a whole episode on. It was amazing.
Kristen:
So amazing.
Gwen:
We went to meet a company that is changing the world from an audio perspective with our friend Jen from the Special Olympics, who we'll have on again soon because we loved her.
Kristen:
Yeah, we did love her.
Gwen:
We hope you all loved her too, because we sure do. And then we flew back from Vegas and then 40 hours later flew to California as a family with another family for spring break. So we are home now and just trying to catch our breath a little bit.
Kristen:
Nice.
Gwen:
What's been happening over there?
Kristen:
Oh, we've been having a little spring renaissance. For the past year or so, Graham has been really pretty isolated, pretty kind of stuck in his room as you'll hear from our guests today, not an uncommon experience for autistic adults to experience burnout, which is what we think had happened to Graham. And he started venturing out and being interested in unprompted potential social interaction. And we recently just this weekend, met up with another mom and her young adult son who's autistic and Graham and this young man had a 45 minute hangout at Starbucks and laughed and chatted, and I actually had to end it because we had to go somewhere for an appointment and they were disappointed and they thought maybe they could go to the movies next time.
Gwen:
I love this.
Kristen:
I just felt like, oh my gosh, literally I'm done. This was the pinnacle of my month.
Gwen:
I am so thrilled to hear this. This is such a heartbreak for so many of us parents. It might sound silly to parents of neurotypical children to rejoice over a 45 minute social hangout, but it really is worthy of rejoicing.
Kristen:
It really is. I mean, they laughed. They talked about, when I walked up, they were talking about autism and we didn't even ask what they were talking about. We just came up to tell them that we were heading out and the friend said, "We were just talking about autism and we were talking about anxiety," and he's quite smart, this friend, talking about the genetic components of autism and then how similar their challenges are and their anxieties. I know it was just so, I mean, I don't know how to describe the feeling of walking away from such a inconsequential looking interaction that was so profound for us and for Graham to feel successful and this potential like friend actually liked him and wanted to hang out with him. So been a lot of little wins like that lately that have kind of changed Graham's day to day, which is pretty amazing.
Gwen:
Super amazing. I'm very happy for you, but mainly for Graham.
Kristen:
Me too.
Gwen:
Well, mine is a positive one with Rylan too. Vacation is typically, as our audience knows and has heard us talk about, real challenging. And I will say that this vacation, while it just has natural challenges with any family and with Rylan just being outside of his normal routine and being around people that he's not always around, he did remarkably well. I only had one moment where I had to pull him out of the room and make him take a break and me take a break because I was going to lose it. But I think that's just pretty typical for a family. And two things happened that were just so sweet that it kind of took my breath away. We were in southern California and we went to a farm stand and they had a field of flowers and they were 15 bucks, buy 10 stems. Well, we were on vacation. Tim and I weren't going to go do it just because we didn't feel like spending since we couldn't take the flowers home. But Rylan goes, "Mom, I work and I would like to use my money to buy you some flowers."
Kristen:
Get out of here.
Gwen:
So he took me to the flower fields, he talked to the people at the stand. He said, "I'm going to buy my mom some flowers. I have $15. I have my own credit card." And they were like, "Oh, that's so sweet. Just go pick your flowers and come back." He goes, "Mom, you can get 20. If you find 20 flowers that speak to you, you can get 20." So we walked the field together and he wanted me to pick all the flowers that spoke to me, and then I insisted that he pick a few and we just took our sweet time picking all these gorgeous flowers and we took them back with us and put them in a vase and it was just the sweetest.
Kristen:
And you didn't talk about what was happening next or Pokemon or anything?
Gwen:
No.
Kristen:
Wow.
Gwen:
We just talked about the flowers and how beautiful. And then we were done. He goes, "Mom, I noticed a labyrinth. Would you like to go walk the labyrinth with me?"
Kristen:
Well, who are you and what have you done with Rylan?
Gwen:
I absolutely wanted to walk the labyrinth. So we did that together.
Kristen:
That sounds amazing.
Gwen:
Yeah so that was a really, really sweet Rylanism.
Kristen:
It's a big little win. Big little wins all around.
Gwen:
That's right.
Kristen:
We have a guest with us today that I'm so excited about. We, I think as parents and families so often are focused on our kids where they're at, I think it's really nice to speak with an autistic adult who is really engaged in self-advocacy and advocacy for others. So I am so excited to introduce you to Becca Lori Hector, who was diagnosed on the autism spectrum as an adult and has since become a dedicated autism and neurodiversity advocate, researcher, consultant, speaker, and author.
Gwen:
We love all those things.
Kristen:
Yes, we do. While focusing on living an active positive life, her work includes autism and neurodiversity consulting, autistic quality of life research, public speaking engagements, as well as teaching her course that's called Self-Defined Living, a Path to a Quality Autistic life and her related seminars. I also want to mention that she's an animal lover with a special affinity for cats. She spends most of her free time with her many animals, her husband Antonio, and their emotional support animal ESA. My son Jameson has one too, sir Walter Underfoot. Sir Walter Underfoot travels does woofing engagements and has his very own Instagram to share with the world as his life as an ESA to an autistic adult. So welcome Becca.
Gwen:
Can we also mention real quick that Becca also has outside of a course, she has a podcast and she has a book launching on April 25th called Always Bring Your Sunglasses. Just thought I'd throw that in there too.
Kristen:
I mean, come on.
Gwen:
Welcome Becca.
Becca:
Thank you guys so much for having me. I hate to add to the list, but I do more things than that. It's crazy. And when I hear other people talk about it, it freaks me out.
Gwen:
What else do you do? Tell us all the things.
Becca:
My current focus in our community is employment. I'm really, really interested in seeing neurodivergent and otherwise disabled folks make their way into visible leadership roles. So I'm doing that through DEIB, which is diversity, equity, inclusion, and belonging. And so I do that kind of consulting as well outside of the stuff that I do that you guys talked about.
Gwen:
And you're in Maine, very north Maine.
Becca:
Yes.
Gwen:
So do you do a lot of that work in your local community as far as the employment?
Becca:
No. I live in a really, really rural area, so it's kind of a different setup for us than it is for other places. We don't have those kind of town centers where big buildings are and things like that. We have that in town, but not to our little local towns. And so that's a little different for me, but that works for me because one of the reasons that I went into business for myself almost 10 years ago is because it wasn't working for me to go to an office and I needed to work remotely. And so in a time when we weren't getting remote work options, I had to choose to rebel against that and go into business for myself. And the majority of the work that I do has always been remote or I'm traveling to it somewhere. And these days it's mostly remote now, everything we're doing is so, yeah.
Kristen:
It's so interesting that and mid-pandemic, the world of work changed so much, and I think in a lot of ways, that was a really good change for people who are neurodivergent and that your ability to work has changed. And I want to hear more about that, but first I really want to hear about what created this fire in your belly for self-advocacy and advocacy for others. Tell us a little bit about your experience and what led you to this work.
Becca:
Sure. So for myself, I think I had really lived a really challenging life up until the time that I was 36 years old, and the last from 33 to 36, I sort of had done my 15th different job in 13 years. I had given it all, my 150%. Nothing was working out. I couldn't make it make sense, and I just decided I'd had enough and I gave up. So I went home to my childhood bedroom, crawled into bed, and I kind of waited for it to be over for three years. And that was really my, actually it was my last burnout. So I went to burn out there for a bunch of years, and then I was actually researching about my migraine headaches from home, obviously because I was homebound and in my kind of internet spiral that we all do when we click on the bottoms of things into the next one, to the next one, to the next one, I ended up finding sensory processing disorder, which felt really familiar to me.
And then at the bottom of that link at the time was Asperger's syndrome. And I read about it and it was reading my own biography on Wikipedia, and that was a really odd experience, but that's how autism came into my life and I got my diagnosis and it so radically changed my abilities, my strengths, my mental health, so many other things that I really just felt this need that once I was sort of back on my feet to pay it forward and to give back to our community. And that's really where the self-advocacy began. It began very simply by volunteering for the organization that answered the phone when I called. And that's where it all started for me.
Gwen:
And what did your diagnosis process look like as an adult? I think that would be really interesting for other adults out there to hear.
Becca:
Absolutely. It's not great, right? I will tell you that. And for a lot of us, it's an uncomfortable kind of test because there's no right answer to any of it. There's no way to get it right and that kind of thing. And at the same time, it feels like it's judging you, that's complete. Like are you good enough to be counted as autistic? It just feels very, it has that judgmental feel to it. For me, at the time, I was very unwell mentally. My mental health was really, really, really terrible. And so I needed the outside confirmation from an outside source because even though I found it, and I was a hundred percent sure, and my mom was a hundred percent sure, it was still, I had lived 36 years on this planet and never once made a good decision. So it was really hard to trust myself.
It was hard to trust my own judgment. And so I really sought that outside help. And so really it was a lot of luck for me. I had a very good experience with mine and I was living in New York City and that alone was enough to give me a heads-up over other people. By living in New York, it meant that I had access to some of the most forward-thinking therapists at the time. There were a lot of choices of them because of where I lived and that kind of thing. And so I got very lucky that not too far from my home, there was actually someone who was doing diagnosis for adult women, which was, right? I mean, it was like a needle and haystack. And that was almost adults 11, 12 years ago. So I was like a unicorn to them that I was this adult woman coming seeking an autism diagnosis. So there weren't a lot of clinicians working on that with enough experience.
Kristen:
Talk a little bit about why it's so important for somebody to have experience working with women who are autistic. Talk about that. The way it manifests in women is different.
Becca:
Right, well, it does for a lot of different, well, men and women are different, and so that's part of it. But the other part of it is that we raise our girls different than we raise our boys. And so what I looked like to people on the outside was a very quiet, good girl. I just was always reading. I wasn't a behavior problem. I wasn't interrupting class. I just wanted to be left alone. And no one cared that I was isolated and lonely and struggling and whatever because I was a good little girl. And when that was back in the early eighties, and what we were looking for when we said autism back then was very particular. It was a very particular white cis male non-speaking.
Kristen:
Right, with an intellectual disability.
Becca:
That's what we were looking for. No way would they have caught me or thought about it or any of that stuff. And so what we ended up having from starting in that area of looking only at white cis boys is that we had a lot of diagnostic bias in our testing. Our testing questions were geared towards a way that particularly young autistic boys look. And so when you are an adult seeking a diagnosis, the first thing you want to know is does this clinician have experience with adults with autism? Because contrary to the myth that it disappears somewhere at 18 and we all just, I don't know...
Kristen:
Don't need services anymore, everything's good.
Becca:
Right. We have our birthday and wake up unautistic the next day. So however that works out. But there are a lot of us that are in adulthood and are still seeking to understand that piece of us that perhaps it was denied to us because of our limited knowledge about autism.
Gwen:
Well, and do you think Becca, that after masking for that many years, that it's even presenting differently because you're masking in a way that doesn't really represent how you truly feel, do you think that that complicates it?
Becca:
That can certainly be a part of it. And that's why it's really important to find a clinician that understands what it looks like for adults who do mask, not that children don't. I don't want to give that misconception because I learned to mask very young. And so four years old, five, six years old, we were beginning to understand our parents, you have to wear this to this event. You have to dress this way, talk this way, behave this way. And so the masking starts very early, but what happens is you get really good at it after you've been doing it since you were four years old. It's like where they tell us that to learn a second language is easier for children. And so essentially what you're doing is teaching your child a second brain language. And so we become the translators. We're constantly translating our needs into words that you guys understand. We're constantly translating our natural social inclinations into something that is working for you guys. And so there's a lot of effort made in masking to make the people around you comfortable despite your discomfort.
Kristen:
Becca, you know what that makes me think of for my own children, and I'm sure for a lot of listeners who have children that they're engaging in a lot of intervention. We spend so many years trying to intervene and teach our kids to be neurotypical. Well, that's the hope, right? That we're going to do this intervention and they're going to behave in a way that's socially acceptable or brings them less pain or anguish or whatever our goals are. But do we really change them or do we just, like you said, teach them a second language? Now we're teaching them to mask.
Becca:
And the end lesson from that, by the way, parents, what that looks like in adulthood are people-pleasers, people who will do anything for other people and they come last in their life. And as we all know, that makes for a very unhealthy person who doesn't take care of themselves. And so that's terrible. It's also telling them almost directly, "Other people's needs are more important than yours," and it's also invalidating their reality of their experiences. So what I want to tell you is you know the autism is going nowhere. You are teaching them how to mask. In essence, that's what you're teaching them. And what you're teaching them is that's better. The masking is better than being themselves. That's what the lesson is around that.
Kristen:
It's really just profound. Humble pie right there. It's big humble pie, and it's painful to hear, but I believe it a hundred percent because I have young adults who have had that experience, and I like to think we did the best we could in protecting who they are and letting them know that who they are is a beautiful person. But there's a subtext to that that I can't take back, that I promoted. You need to shift who you are in order for you to be okay in the world. And that's really hard. I mean, I don't know the right answer.
Becca:
There is no right answer, right? Because here's the truth about that. You as a human being are still growing and evolving. You have your own garbage that your parents gave you, and you are doing better to do better than they did. And then what you're hoping is that your kid will do better than you. And so really, I am not a parent and a part of the reason I'm not a parent is because I know that I could not, the responsibility to me of bringing someone into this world the way that it is and the shape and form that it is, was not something that I really wanted. And it's something that I was fairly certain would be traumatic for me, just as an autistic person. I just have that sense about it. But I talk with a lot of parents, and I talk a lot about my childhood, so I talk about it through that lens all the time.
But what I really wish parents would understand is that what your kids, and I don't mean, I mean all kids, not I don't care if you have a diagnosis, is your job as a parent is to teach your kid when to ask for help, how to ask for help and who to ask for help from. If you arm your kids with that idea, you're creating a person that can go out in the world and get their needs met. Not someone who's going to say, "Oh my God, I don't know how to do my taxes. I'm too embarrassed to go and ask an accountant for help, so I'm just not going to file them."
Kristen:
Right. And Becca, I'm experiencing this real time because Jameson talks a lot about having internalized ableism. And it was so difficult for him to get a 504 plan at the university he's at because he felt like he didn't deserve it. He didn't deserve for it to be easier for him, and that he had to just white knuckle it. And that is that internalized ableism. And he's able to actually articulate that where I think probably many, many kids, young adults, adults feel it and maybe don't have a name for it.
Becca:
And think about where the seed of that comes from. That's that little seed that we start planting at four and five, six years old of this is how you fit in with everybody. You don't want to stand out. You do not want to be different. This is what all the other kids your age are doing.
Kristen:
Well, that's education, right?
Becca:
And then you get to college age and you need to be asking for supports, but your brain is going, "But I'm not supposed to ask for them. I'm not supposed to be different. I'm supposed to be able to do this just like everybody else." And that's been beaten into you all these years. It's 18 years for that to become an internalized belief.
Kristen:
And it's not just us, it's society. It's education. It's the therapy.
Becca:
It's not just you. And understand that even if it is you, it's because someone else did that to you. Someone else gave you that belief and you just haven't had a chance to maybe stop and think about whether that works for you or not. And so you guys are human too. That's the component of it that I just want to stop the divide between parents and their kids so much because if we can fix that relationship so that communication is really clear, and it doesn't have to be fancy language, and it can be not language at all, it can be other ways of communication. But if that line is there for you guys, you can make it through anything. But that's where the disconnect I feel like happens. You guys are inundated by so much information from the outside world with the goal of being the best parent that you could possibly be and not mess up this child.
And then we mess up the child because we're so busy looking for all of the things. And so what you got to really do is simplify. Take it back to the points when this is your kid. Forget diagnoses, forget all of this. This is your kid. They grew up in your body or you got when they were very young and now you're raising them. However it works for you and your family, you know that child better than anybody else except for themselves. You are second in line, you know their likes and dislikes, you know what their first line of tired crankiness is, you know when they're happy. All of those things. And you know that by your gut because you're connected to them. So what you want to do is follow that string. So when someone offers you a support and the string in your belly turns into a ball and you want to climb out of yourself, that's your gut going, "It's not going to work for my kid. Sorry." And that's your moment to say, "Thank you very much for your information. I'll be moving on now." And that's how we put up those boundaries around which things we lean onto and which things we don't lean onto.
Kristen:
Yeah, I'm thinking about my son Graham and how traumatized he was by transition services, and he asked to be done, and we honored that and we pulled him out. And he spent the past year pretty much isolated in his room. And I think he has spent that time honestly just decompressing from his educational experience. And only recently in the past couple of weeks, he has come out of his shell and has asked for some experiences instead of us trying to put some experiences into his life and meeting him where he was at. And you have to do it authentically because I've tried to meet him where he is at.
Becca:
I love it. You guys can't see, but its in air quotes, and those belong in air quotes.
Kristen:
It really does because I always have an agenda to make it better for him. But when I truly let go of expectations and just saw him for who he is and every day greeted him with joy for who he is, it's shifted everything. And now he's feeling confident, even if it's a time. I mean, we've had some really small wins that are pretty profound lately, and I think it's because he needed that time to almost heal and reset, and now he's ready to take on some things.
Becca:
It sounds to me like he's been in burnout, right?
Kristen:
Yeah. Talk a little bit about what that is, Becca.
Becca:
Yeah. So I want to explain, because it's a word that we use a lot, you see it on TV, "Oh, they're going to burn out. They're working too hard." And that's not the same thing as autistic burnout, okay? It's a very different thing. We've talked about masking already in this conversation, and the thing about masking is we learn it very early and it's very successful. It's a very successful tactic. It's exhausting for us. It's traumatizing for us. It's not a sustainable tactic for us, but it's often the only one we're given. And the one that works the best, especially if you're an undiagnosed person, you find out by trial and error that faking it is what works the best and hiding your own needs and all of those things. So what happens is, and what that feels like as a person, is that you are pushing yourself at 150%.
Do you remember a time in your life when you really wanted a particular job or you really wanted an apartment you were trying to get the rent on, or you were trying to get something that you wanted, so you tried your hardest and then it never worked out for you. Someone else got it, or it worked out that way. And that's a really deflating feeling to do your 150% best and think that you're getting it, and then find out not so much. And so when we mask, that's what that feels like. We're masking, we're masking, we're masking. We're getting positive reinforcement, positive reinforcement about it. Look how good you're doing. You're holding onto your job. Look how happy they are with you. You're showering every day. You're doing all of these things. Wow, you're doing great, blah, blah, blah, blah. So on we go. Masking, masking, masking. Because when you guys are happy, you leave us alone. So we mask, we mask, we mask. So we have that.
Gwen:
So true Becca. It's so true.
Becca:
... moments. It is true, right?
Gwen:
Yes.
Becca:
So we can have that alone time so we can do our special interests, so we can decompress in silence. So whatever that thing is, so we do that to appease you, and that's that people pleasing arc. You see it?
Gwen:
Yes.
Becca:
Right? And an end that gets confirmed, rewarded, rewarded, rewarded. And at a certain point, it's so exhausting to run that race that you can't do it anymore. Something will happen in which the system you have, the routine you've got going around your masking gets broken by something, whether you get fired from your job or you don't get into the college you're trying to get into or you fail a class. There's always something that's the last thing for us. And that breaks it into burnout. And we go from being exhausted and shut down and not really engaging to being in full burnout and isolating in our rooms with the door shut for hours on end.
Some of us don't eat, right, most of us won't shower because we've had enough of your BS. We are tired of jumping through hoops just so we could get five minutes alone, and we can't sustain that. And so what our career traps look like is got hired, did a really, really, really good job, got fired or quit, got a new job. There was a year, a little bit of healing, and then I did it again, and then I did it again. And so there's never a career trajectory. There's never a true thriving. There's just surviving.
Gwen:
So Becca, let me ask you, in relation to my own son, he is just incessantly wanting our approving of what he's doing. So every text he sends, "Mom, is this okay? Mom, is this okay? I want to have an energy drink, mom, can I have an energy drink? Is it okay if I have an energy drink?" Does that sound to you like he's so unsure of what we expect that he just needs constant validation? Or do you think, is that just an anxiety?
Becca:
I think it's a combination of things. I think there's definitely anxiety in there, and that's part of that people pleasing anxiety. Did I get it right? Are you happy? Are you proud? Did I do it? Did I do it? Did I do it? Because again, we just want you guys to be happy. If I drink the energy drink, is that going to come back to me later and I won't be able to have screen time? Checking in, checking in, checking in, because there's a lot of balancing happening, because as long as you're happy, then dad's happy and my siblings are okay, they're doing whatever they're doing, and then I can sneak off to my room. No one's looking for me. Finally, the spotlight's off of me. And I don't have to talk about the things that I'm bad at for 10 minutes because that's the other piece that happens to us.
We have no joy because all we do is we're forced to talk about the things that are deficits for us, the things that are challenges for us. And nobody stops to say, "Hey, what are you good at? What do you like?" And that's what you're experiencing Kristen, I think, with your son, is that you gave him the space he needed to literally heal and recover from an exhausting period of either masking for him or trauma for him, whatever it was, and you let him have that space, which looks a lot, and it's hard parents, it looks a lot like someone who's suicidal and depressive, hiding behind a door. That's exactly what it can look like. And sometimes it is so don't be afraid to have that conversation. But it also can just be that I really cannot have another stimulant in my, like, please, I can't have a conversation with you.
I cannot defend my choices to you right now. I don't want to argue about showering. I don't care if I ate today. Please. And we need that time. We got to, because we don't want to be performative anymore. We're tired of performing. That's what it is. And then we need that time. And then as you let us recover, we come back to ourselves, we're not as exhausted, so we can start to hear our thoughts again. We can start to feel joy again. In those moments, we tend to lose the spark that our special interests give us and things like that, so we get to reclaim that as we heal. And then when we're ready, we come back out and say, "I'm feeling better, mom. You want to go to a movie?" And that's healing from burnout.
Gwen:
Oof. It's making me emotional.
Becca:
I'm sorry.
Gwen:
No, don't be sorry. It's so good.
Becca:
That's like you go to the movie and then know that the next day they might still be behind that door though, right? Because we did something, now I'm tired again. I have to recover, right? I'm not wholly healed yet. But that doesn't mean you failed or that it's not going to happen again, because I'm sorry to say it this way. It's not about you.
Gwen:
It isn't? What are you talking about?
Becca:
It's not about you.
Gwen:
Kristen, she just said, it's not about us.
Becca:
It's not about the house that you created or the sheets that you gave them or whether or not their favorite snacks are in the house.
Gwen:
Or the internship I'm lining up for him?
Becca:
But think about that. Is he excited about it or is he not?
Gwen:
He is. It's based on his interests.
Becca:
So we want to make sure we're going down those rabbit holes and not going, "I want this for you," because I want this for you again is that performative.
Kristen:
But then you also have to tolerate in your own body, the discomfort of letting somebody have their own trajectory. And that, right? Because I'm like, "Oh my god, it's been a year. He's been in his room."
Becca:
Three years, I was suicidal in bed, three behind that door.
Kristen:
But when you let somebody have that time, and I just think this is such a powerful, important moment, Becca, not just for us, but for our listeners, to understand what burnout looks like and to understand the pressure that we're putting on our kids when we're so unable to hold and tolerate in our own bodies what's happening for our kids.
Becca:
Here's what I want you to think about when you're in that moment of discomfort in your own self, you want to get out of it, and we all do. This is a human response, by the way. There's no blaming or judgment. It's not about the dynamic of autism or anything like that. This is something that I think I hear from all parents all the time. You just want to be a good parent. And in an effort to do that, you're really trying to not make mistakes, which is near impossible because you're a human being and you created a human being who is not you. They're a different person than you and all of those things, it's complicated. And so understanding that it's not about you and it's about them and understanding how many times they sit in their discomfort for your comfort, how many family occasions, how many dinners at restaurants, how many school events did they go through for you and do their best at? They sat in their discomfort for your comfort and joy, and now it's your turn to do the same. Yeah, it's uncomfortable. I'm sorry. Get comfortable being uncomfortable. We had to.
Kristen:
That's right.
Gwen:
I'm just wondering, Becca, how did your family support you during your three years that you needed to decompress? Did you get the support you needed? Did that help? What does that look like from a parenting lens?
Becca:
I honestly did not get the support I probably needed. And that's real, my opinion I should have been hospitalized for sure, and my mom didn't go that route. And I have, suicidal ideations I think are a fair constant for autistic people. But I had plans and I was well past that place. And so it's my opinion, no, I didn't receive the supports that I needed. I think she was scared and all of those things. And I had given up and I was giving her nothing back, just like Kristen. There was no input for her to make decisions about. And I wasn't diagnosed yet. So there wasn't any context for anything that was going on. We weren't using words like meltdown or burnout or shut down, didn't have them in our vocabulary. And so it was a very different kind of experience than when you have an awareness of what might be going on.
Gwen:
And the awareness is what saved you.
Becca:
Yes, a hundred percent. So the experience of getting that diagnosis and it's very simple way of explaining it, but it seems to work for people to understand. Up until the point that I was 36 years old, I was making uninformed guesses about my life, about what to do for work, how to sleep at night, what to eat, all of those things, how to take care of myself, what was a priority? Guessing, guessing, guessing, uninformed guesses. I got my diagnosis and learned about what that meant for me and learned about my personal brand of autism and what it meant for me. And it was really like getting depth perception into my life. And suddenly I went from making uninformed guesses to making informed decisions.
Gwen:
For yourself.
Becca:
You feel the difference, right? Uninformed guesses and then informed decisions. And so a person who's making informed decisions makes far better choices. And so that's really what that was for me. And so what got me out of burnout was this diagnosis very much by luck came into my life before I went through with my plans. And because it did, it gave me the ability to, it validated for me all of the experiences that got me to that bed in the first place.
It validated for me all of the times that it was hard and everyone was like, "You're brilliant. Why is this hard for you?" And all the times that it was like, "It's not even sunny out. Why do you have your sunglasses on? Ah, you can't wear your sunglasses inside." All of those things became reality for me, and I was validated in it. And that gives you back some of that that goes disappearing. And then you want to know a little bit more and you want to try making some other choices because you're having some success with that, and it gets built upon. And that's how the burnout happens. We don't go into burnout overnight, and so we can't get out of it overnight.
Gwen:
So I love that you just offered these little tangible things like wearing your sunglasses inside. Those tiny things, we as parents are like, because we don't need our sunglasses inside and they seem so simple to us. So I would love to hear just a few examples of things that you learned you could do because they worked for you that maybe the general public or your parents were like, "No, Becca, we don't do that." Can you offer us a little more insight into things that you now have given yourself permission to do?
Becca:
Sure. So I mean, let's start with the sunglasses. I'm a sensory sensitive person. Light is my biggest sensitivity. My entire life I was told that it was crazy that it gave me pain, and it can't hurt to have that happen, right? Lights aren't painful. What are you talking about? All of these things. And so what that meant for me was that anytime I used my sunglasses in a non-traditional way, meaning not at the beach and not when I'm driving, those are the two acceptable, or at a baseball game is the third. Otherwise, someone wearing sunglasses is suspect. What are you hiding? Why aren't you making eye contact with me? You're drinking, you on drugs? Why are your sunglasses on? Judgment, judgment, judgment, judgment. And so the choice becomes sunglasses uncomfortable, judgment and no judgment and uncut, right? Because you have to decide what you want to put up with.
And that's how the masking gets honed in like that. And so for me going, "You know what? I cannot be in a room with bright lights." I don't know who invented ceiling lighting, like the big light, you know the big light, whoever did that, I don't know, go away.
Gwen:
In every classroom, every single classroom.
Becca:
And be buried next to the guy who invented fluorescent lighting because that's the other one that is really, it's really inhuman. And so, okay, you want to create the world like that. Well, I'm going to sit in my doctor's office then and wait for my appointment with sunglasses and a hat on and you guys can stare at me and think I'm a drug addict, and that's all fine, but I don't want to leave here and have a migraine for the next six hours because I had to sit here and read a magazine like you.
It starts to not make sense when you start to value yourself, when you begin to understand that innately just by existing you have value, you start to wonder why you care so much about what other people think about that and whatever. And you start to unravel that internalized ableism. Where did it come from? What is that about? And so that was an early one for me. There are many, so many by now, some of them that are really pretty common for us. I stopped wearing makeup. That was something that as someone with dyspraxia, I always struggled with it, the fine motor coordination of putting on makeup. I'm also not an overly feminine or high maintenance type girl. I don't like clothes and shoes and whatever. If I could be in my pajamas forever, that'd be fine. But I did it. I wore pantyhose. I talk about this all the time.
I wore pantyhose for years into Manhattan wearing heels and pantyhose and a suit, skirt suit. And when I think about the sensory of that and that I did it voluntarily because you're supposed to. So I stopped dressing in those ways and I started dressing in the ways that were comfortable for me and figuring out how, kind of returning to things that I didn't allow myself before, because there's some weird internalized ableism that I had about it that it's not okay, so I shouldn't take care of myself. And so I slowly started pulling those things away, and I started really just making changes for myself. I started honoring my seafoods. If I want to eat chicken nuggets every day, I'm eating chicken nuggets every day. It's my favorite thing. And it's the one sanity moment I have in mostly a day that makes no sense to me.
And so give me that. Let me have that. Why do you care so much? I'm eating. Things like that where I went on my first date with my husband and I didn't meet him until I was 39. So we went on our first date and I was like, "You know what? I don't care what date food is and what date food, getting chicken fingers and fries, and I'm going to eat with my fingers and if he doesn't like it, then this is our only date." But I had to be 40 years old and four years into my diagnosis to do that. And he liked it. Yeah, I guess. Or he didn't hate it because he's still here, or he liked something else about me better, right? Something was more important than the food that I ordered. Right?
Kristen:
Becca, I'm wondering if we can talk a little bit about the work that you've done for DEIB and I want to know what are some of those challenges? And I have experienced it myself working in the field of autism where we're serving children with autism, and yet my staff doesn't have an awareness or acceptance of neurodivergent staff. So talk a little bit about that weird, ironic phenomenally.
Becca:
So the workplace to me is our next frontier as far as I'm concerned. It is the next place where we have screwed up as human beings and have not updated ourselves in a very long time. Our workplaces are broken for any number of reasons, not related to disability, but some are. Most of it is that our workplaces were built for industrialization. They were built for assembly lines. That was the concept behind our business plans. We wanted the same work by the same people, the same amount of hours every day wearing the same uniform and we need this many of them done, thank you. And you all need to do it in this eight hours, and then we're going to all give you the same paycheck like that. And the problem with that is we built our workplaces chasing the sameness and it's unattainable because human beings are all different.
So we were like, "Yes, let's build a workplace on this premise that is impossible to attain, and we're all going to buy into it for the next 30 years," and now we're well into the technology age. And yet it took a plague for remote work to become a reality. Think about that. Just think about that concept. People were paying rent in office buildings for years when we could have all been working from home because people thought we were children and we weren't going to do our work when someone wasn't looking. And what they found out was that we're able to control our environments by ourselves, and we're allowed to get up and walk around and we don't have to waste our energy driving to work, and we don't have to waste our energy wearing the correct clothes for the office. We don't have overhead lighting, that many of us become more productive, and then we like our jobs.
And so we don't want to quit. We're not sitting around the quote, unquote "water cooler" talking about our bosses, and they're trying to undo that now for all kinds of other business reasons. But we as human beings deserve workplaces which are shared public spaces. We all deserve workplaces that feel like we want to be there, not that we have to be there. And that includes those of us who are neurodivergent. In an effort to get there, we've had to do a lot of work. We are just now starting to reap some benefits of some of the disability advocacy surrounding remote work, flexible hours, accommodations, accessibility, but we haven't gotten anywhere near workplace wellness, which is where we need to head next. We haven't done anything about the full employee cycle. We've kind of stopped at interviews. We haven't dealt with onboarding or raises or promotions or retirement.
None of those things have been addressed, so we have a lot of work to do, which means that in all of our businesses, nonprofits and corporations, we're in a learning zone. We're in that transition space and we all know how we feel about transitions. They are not fun and not for any of us. And this transition space is uncomfortable. It's an effort to try and give autistic folks and others who have neurodivergences a voice, but everybody isn't ready to give over the microphone. They're like, "Here, I'm going to hold it for you and you can talk into it just for a minute, just for a minute and only in front of these people. And then we're going to take it away and then we'll tell everybody what you said." And can we put it in a quote in an article about us and that kind of thing.
And what that is performative allyship. And we're hoping to move away from performative allyship to true allyship in our organizations where we are walking the walk that we talk, where we're actually doing the things internally that we are talking about externally, that it matches. Because what happens is just like it happens in your home, we all want to put out the fire that's in front of us. And so we often don't have time to prep or plan for the things coming up. We don't have that luxury. And so that's kind of what's happening. People went out to try to do this mission and change the outside world, but then they didn't really evolve the places that they began. So in our particular realm, as far as I'm concerned, this is just my opinion, it's not fact.
But in our particular realm of autism land, we had a lot of parent-run organizations that started everything. And it's not to poo-poo anybody, it's great. If we didn't have the parents giving us a voice, we would never, we needed that. We needed someone to be that in between for us and our parents have always been those people, but at a certain point, we need our parents to be like, "You know what? We've done our job. Here's your organization." And that's where we are right now.
They're not quite ready to give us the organization yet, but we can look at it. And we can come in sometimes, but folks aren't really ready for autistic people in our full autisticness, right? They're not really ready for us in the workplaces in that way, which is why we have so many issues surrounding disclosure right now.
Gwen:
And talk a little bit about the DEIB, because I think the addition of the B is new to a lot of people. Kristen and I have talked a lot about the difference between inclusion and belonging, because it's significant, but we'd love to hear your take on the B.
Becca:
Sure. Well, the B for me, I chose it, right? And I think a lot of people, you can ascribe to different things. Some folks do the A for accessibility. Some people add a J for justice depending on the thing that is their why behind why they're doing the work that they're doing. And my why behind is that I have never, almost entirely, I want to say not ever, but a few times in a few autistic spaces have experienced belonging. But up until my diagnosis, I had never experienced belonging anywhere. And that feeling of belonging is one of our basic human needs, it's in Maslow's Hierarchy. It's right on there. And if you don't feel that sense of belonging, you can't thrive as a human being. You just can't, that's part of what we need as human, it's like that basic for us. And to me, I have never, especially never felt like I belonged at work.
I never felt valued or fully respected or that I could fully be myself or that I could give my opinions without being judged or for that matter that I could ask a clarifying question without being judged. Clarifying questions are favorite thing of autistic people. God, we love them. We need context. I'm talking context, the why, the what, I get it, or even just to know why we're separating the colors of our laundry, because I'm not wasting any energy until I know that it has purpose. I'm like a cat. I'm a very energy saver. I'm not going to go run. I'm just going to sleep and nap and whatever until it's an emergency. That's what we do. And so we ask a lot of context questions so we know why we're doing it, because we don't just do things. Autistic people don't just do. We have a why behind everything we do.
And so I think that that issue when it translates into the workplace, is the one that buzzes us the most. So it's a really weird one. If you've ever been in a meeting and you have a leader person running the meeting, sharing this new idea, there's a new program and you're sitting there and all your colleagues are going, "This is not going to work." Cool. "It is not going to happen. He didn't think about this. He doesn't know that this out, this," right? And we all just sit there and shake our heads and nobody asks any questions and nobody says, "I don't know." Autistics, we'll say, "I don't understand why we are doing this." And it comes out like, "Can I ask you a question? I don't understand, blah, blah, blah, blah." And that gets interpreted by the neuro-majority as, "I don't think you should be an authority figure. I don't think you're doing your job well." And what we're trying to do is say, "You didn't communicate to me exactly what you need from me. So I don't understand the instructions, and I'm actually wanting to do exactly what you're asking me to do, but I don't understand how. So can you help me out to understand-"
Kristen:
Or why.
Becca:
Or why, or why did you choose to do it this way and not this way?
Kristen:
So they see it as a challenge to their authority as opposed to somebody needs more context.
Becca:
And then everyone else in the room goes, "Whoa." And now the boss has to deal with you because you are now a behavior problem.
Kristen:
Defying authority.
Becca:
And so that's the story that goes down. What's really happening is you're not in a psychologically safe workplace because if you were, people wouldn't be afraid to share their feedback. They wouldn't be afraid of repercussions. They wouldn't be afraid to tell their truth, and the leader wouldn't be afraid to hear it if you were in a psychologically safe environment.
Kristen:
And is that a lot of what happened to you, Becca, in the workplace were scenarios like that?
Becca:
Many, many, so many. The other one that I love that gets us in trouble in the workplace is how much we care about things. So this one gets me. When autistic people do think, if we've committed to doing a thing, we are going to do that thing to the best of our ability. We're going to do it until it's finished and that's it. We don't ask those kinds of questions. We don't not want to do our work. We don't waste our time and all of that. So the other thing that happens is when we actually click on in our meetings and somebody's talking about something and we're like, "That's cool." And we really get in on it. And then we're like, "Yeah, but I would do this and I would do this, and maybe we could do that," right? And we're like in, solid in. People get really wary of us. They're like, "I don't know what's with all that passion. They're too much, too much." Autistics hear that a lot. You're too much. So when we care, we're too much, when we want to communicate with you so we understand better, we're being... And so again, we're receiving negative reinforcement about doing things that are our natural inclination.
Kristen:
So a lot of your work now, I'm assuming, is helping not necessarily the autistic individual, but workplaces understand how to interpret what's happening for somebody who's neurodivergent and how to think differently about including that person.
Becca:
Yes. But it's also about teaching folks how important it is to have different perspectives in your company. Because unconscious bias is a real thing, and it's not something about blame. We all have unconscious biases about some things, and you can't know that you have that until you learn otherwise. And so the best way to avoid having unconscious biases is to surround yourself with as many different perspectives as you can instead of surrounding yourself with yes men, for example. And so what I do is I go into companies and I teach them the importance of that. I teach them the importance of intersectionality in human beings and why they work. I talk to them about the myths that we allow to carry on in our workplaces. I talk to them about psychological safety in the workplace. I talk to them about gaslighting and bullying in the workplace. I talk to them about ableism and internalized ableism in the workplace because those are really the barriers. If we want to talk about truths, that's really the barriers. We can change our systems and processes, but if the leaders of those companies don't understand why we're doing that, they're doing it for show.
Kristen:
This is just so fascinating and it's profound. The shift in thinking is profound for me. I could have this conversation for days, and this is why I was so excited when Becca and I spoke recently, and I felt that parents needed to hear Becca's voice and what that autistic perspective is. And this will not be the last time you hear from Becca. I think we will have an ongoing relationship and hope that we can have you back with us again. I'm so grateful for your energy and your time and for sharing that, it's really, really meaningful to us.
Becca:
My pleasure. And I thank you for having me.
Gwen:
Becca, before we sign off, can you tell us a little bit about your book that's coming out? What is it about? Always Bring Your Sunglasses as the title, and it comes out on the 25th of April.
Becca:
So this book is actually an ode to parents and really a guide for parents and an ode to all of us autistics in our little selves. It's all of my stories of my growing up when I had instances of sensory and social invalidation and how that kind of played out for me, how it was experienced on my end as a little kid, as someone who didn't know why they were different and all of those things. And also, I was being raised by a mom who didn't know why I was different, and she was doing her best to guess. So when I got my diagnosis, one of our first conversations was I was feeling relieved and validated and like, "Haha, I told you so." And my mom was feeling really guilty that she didn't do enough, that she knew what was the right thing? What could I have done differently?
I'm so sorry, blah, blah, blah, blah, and all of this stuff. But the truth is, she really couldn't have done anything differently because the information wasn't out there. Nobody would've validated her in it at that time. She used the resources that she did have, and she was also a single mother raising a kid in New York City. You had to work just so that we could pay rent. So how much can one person do? And so that was our conversation of like, "But mom, you can't know what you couldn't know. No." And so this book is really, this is what I would've told you if I had that capacity. Right?
Kristen:
I love that.
Gwen:
I can't wait. I can't wait.
Becca:
My hope is that folks take from it, that my fellow autistics feel validated in remembering their childhood and that maybe it gives them some closure on some of their experiences, but mostly that for parents like you who are raising our next generation of autistics, that maybe they can have some different outcomes than the rest of us, and maybe they don't have to have so many occurring conditions and all those other things.
Gwen:
That's so fantastic. Becca. We're so happy that you spent three years in your room, as weird as that sounds, so that you can be doing what you're doing right now. You are remarkably inspiring, so thank you for being here. We'd love for you to share with our listeners where they can find you to keep following your voice.
Becca:
Best way to find me, I'm really, really, I guess, heavy on LinkedIn. You can also find me on Instagram. You can just search my name. Everything's just under my name. You can also go to, if you're interested in my DEIB work, which I don't know if you would be, but that's at trulyinclusiveleadership.com. My course and all of my real coaching things are at beccalory.com, and the book is at alwaysbringyoursunglasses.com.
Gwen:
So many .coms. Love it.
Becca:
So many.
Gwen:
Becca, thank you so much.
Becca:
My absolute pleasure.
Gwen:
All right, let's hand it over to our kids.
Reagan:
We know our moms are amazing, but they don't know everything. We think that you deserve to hear from the real experts, their kids. We believe in nothing about us without us. So here it is, the last word.
Gwen:
Okay, we are doing the last word with Rylan Vogelsang.
Rylan:
Hello.
Gwen:
Thank you for being so clear, Rylan. Today we talked with a guest speaker on our podcast about how it feels to live in the world with autism and how the world might expect things of you that maybe aren't appropriate or that you don't understand or that maybe we shouldn't expect that you just have to do because everybody thinks you should. So we're wondering if you can highlight a couple things from your experience that maybe Dad and I think you should be able to do or have goals around that you're like, "Ah, awkward. I don't really care. I don't understand why that's important."
Rylan:
I like hanging out, just do nothing, just talking and stuff.
Gwen:
An example would be we were just at Nana and Papa's, right? And you and Nana and I were just sitting there hanging, you don't...
Rylan:
I didn't know what to do in that situation.
Gwen:
Yeah. You don't know what to do in that situation. And so do we kind of expect that you can do that? That you can just sit in a room with a group of people and just hang out with us?
Rylan:
No, shouldn't.
Gwen:
Oh, we shouldn't expect that.
Rylan:
Yeah.
Gwen:
Okay. Because what does that feel like to you?
Rylan:
Boring and not sure what to do. So maybe it's stressed out a little bit. Yeah.
Gwen:
Yeah. Okay. And you don't know what to do because is the conversation just one that you're not really interested in usually?
Rylan:
Yeah, and not knowing what to do and trying to keep myself busy.
Gwen:
Okay. All right. Is there another example of something? That was a really good example.
Rylan:
Maybe having to clear text message, tell you texts are, because I don't know how the tone will be through text or whatnot.
Gwen:
So I just said to you this evening, right? Something about texts. What did I say?
Rylan:
You don't need to ask permission.
Gwen:
Okay. And so you're saying that you feel like you do need to get permission?
Rylan:
Yes. Because I just need you guys to say, "Yes, that looks like a good text message or no, that will be not good." Or...
Gwen:
Why is that confusing to you?
Rylan:
Because I don't know if one text message will be too much or anything.
Gwen:
And you said the tone, you're not quite sure what the tone sounds like?
Rylan:
Yeah, because some text messages with a certain tone might sound different than with another tone, either happy or mockingly.
Gwen:
And what do you worry about?
Rylan:
People being mad at me.
Gwen:
People being mad at you, okay.
Rylan:
Like why would you say that?
Gwen:
Okay. So that's just being unsure of what to say and how to say it?
Rylan:
I always think of the worst situations, what could happen with it.
Gwen:
So it's just being a little nervous and wanting confirmation from us that it's okay. So what you're telling me is that I should be more patient when you ask me to look at your texts?
Rylan:
Yes. Or making sure I get all the information right, like if I'm scheduling on my D&D meetings. I don't want to accidentally put a wrong dates or time or day.
Gwen:
All right. That's fair. Those are two really good examples. Anything else that you want to highlight?
Rylan:
I don't think so. Maybe driving.
Gwen:
What about it?
Rylan:
Just kind of stressed out, even though I have a lot of practice, I'm still stressed out about it, unfamiliar roads, that sort of thing.
Gwen:
So we're going to start, because he finished his hours, which is huge. He got 50 hours. He's going to take his driving test next week. So can you explain to our listeners how we're going to start slowly driving on your own?
Rylan:
First until I know all the direction to a certain place, they're going to ride with me.
Gwen:
So where are you going to start to drive on your own first?
Rylan:
Forest Hills Foods In Meijer and School.
Gwen:
Yeah, because you know how to get there, right?
Rylan:
Yep. I know how to get there without instructions.
Gwen:
So that's a good plan.
Rylan:
I just know how to get to that one road going back and forth with all the shops, like the shops near *Meyer now to Corner and one
Gwen:
All right. That's great.
Rylan:
But the other ones I don't know how to go to are like friend's houses.
Gwen:
So we're just going to be patient and wait. All right. Thanks for sharing your thoughts, buddy.
Rylan:
Yeah.
Gwen:
Okay, bye.
Rylan:
Bye.
Kristen:
Hi Jameson.
Jameson:
Hi mom.
Kristen:
How are you doing?
Jameson:
Doing fantastic.
Kristen:
We had such a good conversation today with Becca Lori Hector, and I really hope you have the opportunity to meet her someday or go to her website because she is an amazing autistic adult and a lot of her experience really for me resonated about some of your experiences. And so I thought it'd be cool if today we could talk about some of your experience of being autistic in the workplace. What is it like? What were the hard things about working in a place where you maybe felt you had to mask or the sensory experience was a lot? So just tell us a little bit about it.
Jameson:
I think my first job when I worked at a Einstein's, oh boy, I never want to work in fast food again. I mean, I'm sure that's basically everyone's case, but I feel like couldn't really clarify what did and didn't work with you without looking like an absolute buffoon or infantizing the entirety of what autism is. For example, one of the big ones I couldn't do was I couldn't pick up the phone because we had a lot of people calling in for catering or whatever and such. I just couldn't do it because I have a hard time understanding people on the phone sometimes. I just don't really process it and then my brain just shuts down, especially in those really busy days where we're having a lot of or something or that kind of thing. And it looks stupid in front of other people because I'll be just sitting right next to the phone as this ringing.
And one of my other coworkers who was aware that I can't pick up the phone, and I remember that some old lady, she was like, "Why did you make them pick up the phone?" And I was like, "I don't want to explain that."
Kristen:
Oh yeah.
Jameson:
And she seemed kind of annoyed about it as if I was like, it made me look like I was lazy and I just felt like crap about it. And then one of my other recent jobs that I finally had the guts to quit, it only took me three months. I worked as a part-time, I worked as a music teacher. I taught all classical strings, I taught some woodwind, I dabbled in piano, all that fun stuff.
Kristen:
And how old were the people you were giving lessons to?
Jameson:
Pretty wide range. My youngest was seven and then my oldest was 35. Oh my god. I hated the 35-year-old.
Kristen:
Full. Okay, so what was hard about that?
Jameson:
So with teaching kids, parents, obviously I had quite a couple of parents who were wanting to know everything about it and were like, "Why is your teaching style different," and such, and I feel like I had to mask as some bougie neurotypical white guy from, I don't know, from Lamont or Berkeley or something. And that seemed to satisfy them. And I had forced myself in some instances to make eye contact because I was dealing with something, some of the older generation where they believe that eye contact is the only key to success. Then another big one was where my violin students, they would be playing a high note out of tune or it would screech. Everyone does not high pitched noises, but it makes me, it's one of my, with my autism, my sensory issues, it makes me physically ill. I feel like I'm writhing in pain.
It's bad, but I don't want to kind crumple in and cover my ears because that messes with a self-confidence, especially in front of a teacher and such. And my teaching style was to be as liberal and open and chill as possible, but it was super hard because I couldn't just cover my ears, couldn't wear earplugs because that was basically a punch in their face. Like, "Oh my god, you suck so bad." And I remember some students would apologize for, some of my young students would be like, "I'm sorry, that sounded awful." I was like, "No, everyone is supposed to sound. I sounded like that. I've been playing music for a long time, but I still sound, I've sounded like that before."
Kristen:
So I hear you saying that you had to out yourself as being autistic and that was uncomfortable too.
Jameson:
Yeah, because I had to explain a lot to the parents, that the reason that my teaching abilities are like this and that the reason that my curriculums are like this is because I'm on the spectrum. And some parents are like, "Oh, okay." But I do remember some parents were a little bit hesitant and such because a lot of people associate autism as this very infantile kind of thing, I even struggle with it a lot. And so it was difficult. It was very difficult. And I feel like with my autism in the workplace, I masked a lot and I people-pleased a lot. That's why it took me three months to quit that job because...
Kristen:
That sounds exhausting.
Jameson:
Yeah. It was really exhausting because I felt like I had to, my boss was fine, a little awkward, but I felt like I catered to a lot to like, "Oh, I can do this." Or, "If I mess up one thing, I'm suddenly a bad employee," because it feels like I'm making up for the fact that, "Oh, I'm sorry I'm autistic." I know that's kind of not preferred, but whatever.
Kristen:
So you were afraid to make a mistake because then that would be attributed to your autism when everybody makes mistakes.
Jameson:
Exactly. Because that's just kind of how I was raised and believed, because you get rewarded for masking and such and such. If you act like everybody else, you get to participate in things, like you get to experience that, I probably put this in quotations, the "normal human experience" if you would, and you get rewarded for that and you get hooked on it and such. You get disciplined into it.
Kristen:
I like that you say you get hooked on it, because then you want that positive reinforcement, but the way to get it is painful.
Jameson:
And it's like, I even do that today with some of my professors. I mean, I'm getting better at it I think, but where I completely mask and I'm like, "I don't need help. I'm fine. I can get this in." And then I think that's also why I'm such an overachiever, especially when I was in high school with music and taking all those classes and then my first year of college and all that kind of stuff. But yeah, it's a whole rabbit hole that I think is absolutely fantastic that you were able to cover today with, Becca was her name?
Kristen:
Yeah.
Jameson:
Give her my regards.
Kristen:
I will.
Jameson:
I don't know why I said it like that, but...
Kristen:
Thanks for sharing.
Jameson:
Yeah, no, I'm jazzed about it. Thank you for opening the floor and letting me share. Appreciate it.
Gwen:
Thanks for joining us for this episode of You Don't Want a Hug, Right? We'd sure appreciate it if you'd subscribe to our show and your favorite podcast app and if you want to win listener of the month, you can rate and review the show preferably with five stars.
Kristen:
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Gwen:
Remember even the best caretakers make panic rooms out of their closets. No judgment here, friends. So shoulders back, double chins up. We are all in this together.