The Other Autism

EP32: OCD and Mental Health Crises Preceding Autism Diagnosis

February 20, 2024 Kristen Hovet Episode 32
The Other Autism
EP32: OCD and Mental Health Crises Preceding Autism Diagnosis
Show Notes Transcript Chapter Markers

Today, I'm speaking with Zoe Alexandra Glass, a Jiu Jitsu instructor and artist based in Vancouver, British Columbia. Zoe went from listening to The Other Autism while working in a warehouse to being a guest on the show almost a year after her own diagnosis. She shares the story of receiving her autism diagnosis after nearly losing her home and having considerable mental health challenges during the height of the COVID-19 pandemic.

Zoe also discusses her stance on going undiagnosed for nearly four decades, the types of pragmatic successes she's experiencing in occupational therapy, and the disability assistance and tax credits that are available to autistic folks (with a focus on those in British Columbia and Canada).

Together, we talk about the overlap of autism and eating disorders, the problems with traditional sitting meditation for some autistics, and much more!

Watch this episode on YouTube.

Check out Zoe's TikTok, Substack, and YouTube channel.

And links mentioned in this episode:

Disability Assistance (for British Columbians)

Disability Tax Credit (DTC) (for Canadians)

Registered Disability Savings Plan (RDSP) (for Canadians)

Episode outro music: "Unravel (instrumental)" by Zorro, Ooyy

Theme music: "Everything Feels New" by Evgeny Bardyuzha.

All episodes written and produced by Kristen Hovet.

To submit a question to possibly be answered in a future episode, please email kristen.hovet@gmail.com

Become a patron on Patreon!

Buy me a coffee!

Kristen Hovet:

Hey everyone, welcome back to The Other Autism podcast. Today I'm speaking with Zoe, a martial arts instructor based in Vancouver, British Columbia, but before I share our conversation, I'd like to thank Carol and an anonymous donor, who both used the Buy Me a Coffee link to send in a one-time donation. If you find this podcast interesting or helpful in any way and you'd like to do the same, please check out the link in the show notes that says Buy Me a Coffee. For the price of a coffee, or two or three. You can help keep this podcast going and growing. The other thing you can do and if you listen to podcasts, if you're a regular podcast listener, you've probably heard other hosts say please rate and review, and the same is true here. If you have something to say, if you have feedback, leave it in Apple Podcasts, leave it on Spotify, wherever you listen, and give the podcast a review. And the best thing you can do if there's an episode you really like or if you'd like to share the whole podcast with someone, that really helps, too, because sharing the podcast with those you love is truly the biggest compliment you can give me as someone who's making this as a passion project and really pushing to eventually have this be more of a full-time gig. Every little bit counts. So if you currently don't have the means to leave a donation, or later I'm gonna talk about Patreon because I just made one of those, if you don't have the means to do that at this point in time, that's totally cool, I get it.

Kristen Hovet:

If you wanna support the show in other ways that are non-monetary, leave a rating and or review, if you haven't already done so. It would mean a lot, for sure. If you'd like to become more involved with The Other Autism and The Other Autism community, if you'd like access to exclusive content, which I'm still working on figuring out what that will be, I've just launched The Other Autism Patreon. Head on over to patreon. com/ TheO therA utism. All one word. There's also a link in the show notes.

Kristen Hovet:

I think I have three members so far, so it's kinda crickets over there right now, but just wait, it'll grow, we'll have a little community over there. I think there's even an option, if you get Patreon on your phone, I can set up a group chat so we can all chat with each other, which I do with another creator that I follow, and it's pretty interesting and funny like people share some funny things, so maybe we can get that going. I think I'm gonna set a goal of 10. If we get 10 members on the Patreon, I will set up the group chat. So yeah. And with that, please say hello to my guest for today, Zoe.

Zoe Alexandra Glass:

My name is Zoe, I'm 39 years old. I'm in Vancouver, BC. I was diagnosed on Thursday, April 20th of 2023, at 38 years old, and there's two answers to that question of what preceded or prompted the diagnosis. The first is like the general all my life answer, that's like the scenic route. In terms of what became the end game of it was really prompted by the inability to transition back into the real world after COVID. So during COVID I wasn't fine, nobody was fine, but I was living a type of life that I never had access to and I never, because I've always been living within more than difficulty, inability to keep jobs, never being able to make enough money. And during COVID I could not keep working my three and four jobs to make ends meet and everything changed and shifted. And everything literally got quiet and then I lived within this like alternate universe. I was having a lot of issues, but I also didn't know that it was regulating my body to be in quiet all the time and like not have to be working four jobs to barely make ends meet.

Zoe Alexandra Glass:

When the transition from 2020 to 2021 came, I basically what happened was like in the DSM-5- TR there's like the description of like until capabilities reach their maximum or before, until coping mechanisms no longer work. Like that is, basically, I was put to transition between 2020 to 2021, back to work, and I could not. And to be honest, I don't really remember 2021. I would have to really go back because I have a lot of dissociation with that time period and then that transition period, yeah, I don't even remember and then that kicked off another year where, like, the crumbling of a lot of deeper, meaningful friendships came to an end again.

Zoe Alexandra Glass:

I've had mental health crises my entire life, but this was the crises to end them all. Like this was the biggest one. Oh, and on top of this, like this is not just personal, this is pragmatic. Like I had to close my business that was doing well. I lost all of my income or even the support from the government. Everything went to collections. I had unsurmountable debt. I could not pay my rent. I could not find a job. The job that I eventually did find was not enough, as per usual, but then in my job, I could barely function. If there was like three people in the store, the level of anxiety I had was so abundant and it wasn't just something that I could hold inside, like people who were buying their art supplies or whatever would like notice and be like, are you okay? And it's like something is leaking out of me. How can I not do these simple tasks anymore? And so I really was trying to hold myself together while literally everything, every single structure in my life, was collapsing.

Zoe Alexandra Glass:

Yeah, it was around two years to this day that I, for the first time in my life, I said Zoe, something is wrong. And I want to caveat I don't think autism is wrong. I don't imply anything with my words, but like I knew something was going on and by 38, this should, no, this is unmanageable. And suicidal ideation is a very, it's a reality for me. It's always been throughout my life and like it was just coming back. But then it was starting to get very real and very scary, especially after I lost all of my money and I eventually got an eviction notice. Like it got fucking scary. I had relied on my parents my entire life and they were so mad at like why can't she be like, why aren't you making money? Like what is wrong? Like you can't, like what is going on and I just had it. It was like, then I'll lose my housing because I don't know what's going on with me.

Zoe Alexandra Glass:

It was really at the point when I gave up within the spring of 2022. And I thought you know what? This is my life and it's never been different. It is the worst right now, but this has just been a cycle and I just have to accept that this is what life is, like not being able to eat because I can't buy groceries, not being able to find proper pay or, if I do find a job, having these weird interpersonal issues come up that end up getting me fired or having a rancorous separation from a company. Over and over and over and over again. And it's like this is just what life is. I guess I accept this, and it was literally when I had given up trying to figure out what was going on with me that like a series of events coalesced for me and then it came into focus like, like I did not pursue a diagnosis to get diagnosed.

Zoe Alexandra Glass:

I pursued a diagnosis initially to rule it out because it was the big one. Like out of all the things, and I've had so many connections with people who are bipolar or deal with depression and anxiety and I was always within the circles of these people and I understood them on a particular level. But I also knew that there's a lot of stuff about certain issues that I resonated with up to a point, up to a point, up to a point. And then when I started to seriously consider if autism was the thing with me, I kept my distance from it because I was like, I will always reserve a margin for me being wrong or for me not being able to see the full picture. And I kept waiting for that time where I would hit the wall and it would be oh, that doesn't really fit, I see this, but I don't see that. But like the inverse happened, where it was like it just kept getting deeper and I was like this is it! I relate to that, this makes sense, that makes sense, holy fuck. And then, once I started to accumulate this idea that this could be a reality, then like my mind went fuzzy and it's like no, this can't be it. There's no fucking way. I have so much rage, not at anyone particularly, but it's just like, it has such a surreal feeling to live with an invisible disability that other people still saw. I did not live a life where people are like glazing me over or like, everybody fucking noticed! Everybody! And whether they want to accept that now or rationalize something away, everybody in my life who I've ever had contact with has seen it. And it's just like, I can't believe this happened because I was listening to your podcast when I eventually got a job in a warehouse.

Zoe Alexandra Glass:

It was not good, it was the worst. It was the fucking worst. On top of everything, I also have a learning disability with math, and so the warehouse, the premise of the job was basic math, and I was like I am between a rock and a hard place. My landlord extended, like after they gave the eviction notice, I finally emailed them and then, what the classic thing that everybody says, why didn't you communicate with me? Why didn't you say this? Why? You can't, you can't not communicate. And it was so difficult for me to like tell anyone anything because I didn't know how to. And so eventually she gave me some space and we worked out a payment plan, once I did get a job, to try to get out of the hole that I was in.

Zoe Alexandra Glass:

And I was in the warehouse and I listened to enough podcasts and I had enough inquiry that I was like, this is life or death for me. This is not because I'm curious, if I can find a reason that I can live again or have a second chance at life, like I need help and I need to find someone who can help me because nobody ever helped me and that's the reality for me. That's what this was like. And then it was a long process. It was like a year process that things fell into place which was not comfortable, financially wise. T here's just so many details and moving parts that I cannot possibly put together on a map.

Zoe Alexandra Glass:

But it was, basically, it wasn't really a choice for me. It was imperative because, past the point of reading books or seeing things on the internet, it was like I can't, I can't just sit with this, I need someone to rule it out. And then I found someone and again it like went the other direction. I was given, with a therapist, I had to change therapists because the one who I brought it up to just was, they were wonderful, but they said, basically, I can't help you, this is not my area. And so that was another layer because then I left my therapist I had been with for seven years, but I was getting worse all the time, and so like, the amount of stuff that has happened within a year and a half of my life has turned absolutely upside down and inside out.

Kristen Hovet:

I'm just taking notes, too, as you speak, and one thing you mentioned was earlier on in your life, like growing up, so that's a part of it, and all the times that someone could have seen it and they didn't or if they did, they didn't say anything. So I feel like that's a failure, a systemic failure, and that you were failed over and over and over again and that's such a common story. I definitely experienced that and so many other people that I've spoken with have experienced that. Were there any key things, kind of experiences growing up, or times when you feel like it could have been recognized, or things that you specifically recall?

Zoe Alexandra Glass:

There's a lot of significant, obvious things, but it's so difficult because, like, the first thing you want to do is be able to place blame. In any kind of situation, you want some kind of accountability pinpoint. I think one of the most complex things that I'm grieving now is that there's not just one thing that I can point to, and my therapist has helped me a lot with this because it was going to be very difficult for someone like myself to be recognized back in, I was born in 84. So like mid 80s to maybe my high school years, like 2000s, I was taken to a psychiatrist when I was 14 because I was self-harming. But the thing about that person, what makes me more angry, like, okay, I can sort of see the autism was not like it was still, it was kind of like almost forget it unless I was expressing my meltdowns and not hiding them. I feel that if I had, and this goes into blaming myself territory, because I was consistently having meltdowns, but I was very good at hiding them or not really showing the extent of my daily anxiety. And if I had just screamed more, if I had just thrown the things that I wanted to throw, I did throw things sometimes and, you know, that got me in trouble real quick at school. So like for me it wasn't going to be possible, especially when I saw a psychiatrist who, like I understand that autism may have been not on the radar back in like 1999. But like he didn't even pick up OCD. That's incredible. I've had OCD since around eight years old. The fact that I spent an hour with this person for an intake and they couldn't even clock OCD and instead they told my parents that I was delusional. And so, I have both sides of like, I've fought for this place in my life for so long and I really empathize with people who cannot find doctors who will listen to them because I've had that experience. Or even doctors who do adult assessments and then can't take you, and I understand the vitriol that people have towards that system. But also I have experienced the other side as well and I want to tell people, good doctors do exist and thorough practitioners and clinicians with good assessments do exist, but it might take a lifetime to find them. And I think I got off the original question. Oh, about people seeing me. It's just so, it's so intense. I have pictures of like, I would line up all my, you know, I'd organize my toys in the certain way, or I would,

Zoe Alexandra Glass:

one thing I did was like repetitive audio play. I had a little player piano and it was a running joke in my house for forever because there was one song on the little player piano I would just play over and over and over again. My dad was like, it drove me nuts, you just kept pressing the button and the song would play forever and ever. And so like, significant repetitive behaviors throughout my life, which are both like, with autism, OCD, the repetitiveness is different, it comes from a different well. Like, they're very distinct for me. My obsessive interests, my restricted interests, people noticed, people noticed, and like, that's just Zoe. They went into uncomfortable territory. My restricted interests were not limited to objects or music, it was also people. And so that's another layer of like feeling a lot of confusion or being told that like, you're being creepy or you're, why are you obsessed with them? Or like, celebrities and stuff, interest to the point where it's like, oh, that's off, you know, to an outside person.

Zoe Alexandra Glass:

An interesting thing is like, in grade school, in retrospect I think I had a crush on a boy but I didn't know how to talk to him or to play with him or be around him more. And his mother drove a Volvo car, like the old sort of old school 80s Volvos have a specific like boxy look. They have a very specific look and I think, because I liked him and his mom had a Volvo, I picked Volvo as this car that I was intensely interested in and then I started counting them on the highway. I would look for Volvos everywhere I went. So like my like crush for, like a human person, the way that I was able to express that affection was through care for an object and to keep track of all these cars. I'd be in the car counting one, two, three, and my parents were just like, oh, she's counting her Volvos.

Zoe Alexandra Glass:

Just to touch on my parents, they have expressed a lot of guilt regarding this. I don't think they've really processed anything about this yet because it's made incredible ripples, ripple effects throughout the family dynamic. My mom mentioned a couple of Christmases ago that she used to cut the tags out of my clothes because I asked her to. And I was like, you never told me this. She's like, well, it wasn't a big deal. I was like, this is a big deal. Then she mentioned, well, you just don't understand how much we accommodated you. I was like, do you hear what you're saying? My mind is exploding right now. What are you talking about? I don't have these memories. I've locked them away in an iron box.

Zoe Alexandra Glass:

I didn't start remembering my childhood until I started going to therapy with an ASD clinician. That's like another level that I am currently dealing with. All these intrusive memories that I have never processed are coming back now full force. It's too much.

Zoe Alexandra Glass:

But even with the Volvo thing, my parents never made me feel weird for it, to the extent that my dad found a Volvo graveyard a half hour outside of our town. For one day, he's like, I want to take you somewhere. It was just a Volvo mechanic with a sprawling yard with all the Volvos that were in repair. There were hundreds of them and I freaked out! I couldn't believe it! My parents, it's such a complex thing to process because they saw a lot of things, but they didn't know what it was or they didn't make it like it was too weird. They tried to find, they tried to give me the Volvo lot so I could embrace this fascination with this car. And, by the way, I didn't have the self-awareness about the connection to the crush and the car. This came out from my therapy and from considering how I project, my emotions are more comfortable around objects or gift giving, or without verbal exchange or touch or anything like that.

Kristen Hovet:

Are you comfortable sharing what your diagnosis is specifically? I know you shared with me that it's level two.

Zoe Alexandra Glass:

I want to technically say that I was not provided a number level in my report. I have autism spectrum disorder without accompanying language or intellectual impairment. I have persistent depressive disorder. I have obsessive compulsive disorder, generalized anxiety disorder, and the specified learning disability in mathematics. And that's a lot. Where is my camera? That's five! But within my report, which was about 30 pages I think, the language within the report aligns with a diagnostic of more level two supports, not only with their recommendations, which were so lengthy, I couldn't process how much accommodation they gave me — accommodations for the workspace, they gave me accommodations should I go back to school, and then they gave me personal recommendations which I thought, reading them, I was like, this is excessive. Holy crap, have I needed this all this time? And then there was language in my report that has, on the different tests that I did, the ADOS I was average, but with the CARS-2-HF I scored moderate. And then with the SRS-2, which my therapist gave me prior to, he was screening me for the referral to the assessment, and also the SRS-2 that was given to me in my assessment, both had a score of severe. And there is so much more language in this report that points to a moderate, for argument's sake,

Zoe Alexandra Glass:

moderate experience of autism. That's not how I would put it, but I can't come up with it right now. And then trying to find people online, I don't relate to a lot of the experiences that I see a lot of YouTubers expressing or people on Reddit. The forums that I find the most pragmatic for myself are the ones that are geared to more moderate support needs people, people who have a lot of pragmatic issues like myself, which is why I'm in occupational therapy. People like myself that, like, the whole relationship thing or partnership or marriage or anything like that. It really bothers me when I see a lot of popular discussions saying how not having a marriage or anything like that is a stereotype of autism, and it's like you need to step back before you start, not you, but before people start making sweeping generalizations about the autistic community as a whole just because you were never seen. And I say that for myself as well as for everyone else. Everybody wants to be seen and everybody deserves to have their pain recognized, but not at the expense of being laterally ableist or denying the fact that a lot of these stereotypes are people, moderate and high support needs individuals exist and the community existed way before I ever entered into it.

Zoe Alexandra Glass:

Even though I know I have different support needs or perspectives, or difficulty even understanding why someone would want to have a relationship, because for me it's just a waste of time. And I say that, like, I have all my interests that I like, I only have so much energy. I have tried but I just didn't get it. I don't get it and that's OK. And I'm not a stereotype because having a marriage is of no interest to me. I'm just in the spectrum with all of you. I just like that's just something that really wears on me because I understand how people really want to be seen, but it can't be at the expense of pretending that all aspects of people in the autism spectrum don't exist. Just because you experienced something doesn't mean that other people are not out there experiencing something different.

Kristen Hovet:

You mentioned occupational therapy, so in what ways has that helped you?

Zoe Alexandra Glass:

It's helping me understand how my executive and adaptive functioning affect my daily life because for decades I was not able to brush my teeth or maintain dental hygiene, which led to a lot of dental rot and a lot of issues with my teeth. Really, it's trying to develop systems for myself so that I can take care of my basic needs, brushing my teeth, maintaining dental hygiene. I struggled a lot with flossing because of sensory issues which I never correlated, but then I had more information. I was like, oh, I see how this happened. It was tough to tell my occupational therapist. I was like, it's not about, oh, it's a drag on time. Like putting the floss between my teeth is one of the most disgusting feelings and I can't do it. I used to have a boyfriend back, I can't remember what year it was, a long, long time ago, and he was like, how do you not floss? It's just like you do this, you do this, and I was like, don't put that thing near me, like I can't do it, and he was like jokingly with me. But now I think back and it has a completely different lens over it. Occupational therapy is also helping me, I struggle with eating properly or hydrating, really trying to have visual cues for these moments throughout my day. That is eventually going to give me energy and battery to be able to show up for the part time work that I do have and have my brain, on a very biological level, function, with enough steam and energy. Dealing with my sleeping patterns, also trying to like,

Zoe Alexandra Glass:

there were times in occupational therapy where I was still incredibly distressed and I was like engaging in self injurious behavior and I didn't notice it and my occupational therapist was like, you are doing X right now. Do you know that that's happening? And it was like, no, I don't know all these things and I still don't feel like I'm really communicating what occupational therapy is doing for me. But I was always asking for OT when I was in therapy, like when I was with my past therapist. He was trying to get me to meditate, go meta and seek within yourself, and I was like, I can't brush my teeth. Can you tell me how to brush my teeth? I can't hold a job. How is meditation going to help me not be houseless? And I was asking for these very pragmatic things that occupational therapy is now addressing. But I didn't know what occupational therapy was for autism and also to that extent many autistic people have very differing experiences in OT. This is just mine. They can work also with motor skills and stuff like that. But mine is more specifically targeted to my executive and adaptive functioning so that I can build a scaffold that hopefully in the future I can work full time and not burn out, because I did burn out when I was at the warehouse and I had to take a medical leave. Like it's on record record, I was away for two weeks, signed off by my psychologist, because I was burned out. So it's also working to change my relationship to food, which is like another section.

Zoe Alexandra Glass:

Like I've had disordered eating my whole life. I've had really restrictive eating habits. Also, cognitively, I don't get hungry, so, like the first thing we worked on, he's like how's your breakfast? I don't have breakfast because if I get up at eight then I'm not hungry till 10.

Zoe Alexandra Glass:

But once it hits 10, breakfast is over and he was like, what do you mean? I was like, it's past breakfast time, so I can't eat until 12, which is lunch. And he was like, do you eat according to cognitive prompts? And I was like, yeah, I don't know how, like, what else is there? Then if I miss lunch and lunch is from 12 to 1:30 ish, but if I go like quarter to two, I can't have lunch and he was like, okay, well. And that's like the rigidity, the rigid thinking, which is impacting me in a very real bodily way, and he also helps me, he's trying to like massage this out so that I can practice flexibility, but also not get distressed when I change my rigid thinking towards eating. It's a very long process. It's been up and down, but it's made a lot of inroads in my daily quality of life so far.

Kristen Hovet:

That's great. I have so many things to say. One of them is, I didn't know what occupational therapy was for the longest time and it came after my diagnosis and then when I did find out about it, I thought it was a thing that kids get. And when I was diagnosed myself, occupational therapy never came up, because I'm quote unquote what they used to call high functioning, level one. But things for me that I wish I had learned were things like finances and I also have a learning disability when it comes to math. So I need the extra supports, like teach me finance. But then I need like the basics, the very, very basics of like adding things up.

Kristen Hovet:

The other thing that came to mind, and this is for professionals listening, like when someone comes to you and they have disordered eating in any way, shape, or form and they're not diagnosed autistic yet, please get them an assessment because the overlap is so, so strong. I've also had disordered eating, so right there with you, and it never came up. Like I had to wait so many years for that ever to be on the radar for people, like the autism thing.

Zoe Alexandra Glass:

I want to mention, about the eating, because another connection I made, so I had issues with my weight when I was pretty young. It happened around 10. Like I mean, I gained a lot of weight in a very short amount of time. I think it was a sensory issue thing, now that I reflect back. When I was a young teenager, I decided that I wanted to lose some weight and I tried Weight Watchers and it was unbelievably successful for me. I lost 55 pounds over a course of time, I think it was like a year. It just worked for me. Like it worked.

Zoe Alexandra Glass:

It wasn't until I revisited that era of my life, knowing what I know now about myself, and I was like, this worked because it was all about systems and structures and routine and predictability.

Zoe Alexandra Glass:

Back then they had like, I don't know what they do now, but it was all about points and ordering, like structuring your food and knowing when was going to happen, how, and how many points. Everything was just designed for me and I didn't have to think about it because it was already systemized for me and it was just so easy because that is naturally how my brain understands information. And at the same time it was very restrictive in a way.

Zoe Alexandra Glass:

So like there's lots of elements that play for me back then that were really, really beneficial to what my personal goals were, but in a way that was invisible to me, like, I didn't know why it was working or how I didn't have trouble using their strategies.

Zoe Alexandra Glass:

But now, as I reflect back on how things in my life are more comfortable and easy when everything is set out and everything is regimented and predictable, and this means that and that means this, and if this just happens the way I know that it's going to happen, this is going to be the result. And so that level of control over, like, the relationship I had with food really helped me. There were other things, there were like dark sides to it as well, but just for that, realizing how I structured my food, I was like, no wonder that worked for me because that is what I'm seeking out of life all the time, that rigidity. It was just so easy to slip into it because, with my own disordered eating, it was just a mess and that gave me some kind of construct to work within and then it was a little bit healing for me and within my relationship with food, which is still a struggle.

Kristen Hovet:

I guess to switch gears before we run out of time, I wanted to talk about your martial arts, so that was one of the things you first mentioned when you reached out to me. So I know you practice, I'm going to say it wrong, Brazilian Jiu Jitsu.

Zoe Alexandra Glass:

No, yeah, that's it.

Kristen Hovet:

That's it, okay! Or you said BJJ for short. Can you share more about how you got into your martial arts and also how this practice has helped you in the context of being autistic?

Zoe Alexandra Glass:

So I started Jiu Jitsu far before, seven years, seven years before any of this cropped up for me. I liked it because it's basically your problem solving in real time with other people's bodies, trying to flip them, trying to pass their legs, trying to get to their back. Beyond it being playful and a really intense way to work out, it's so intense, like it's just, it's nothing, there's nothing else like it. Like there's no jog I could go on, there's no elliptical I could train on that is like, will replace the feeling and the adrenaline and the rush of what Jiu Jitsu is. But also, because it's such a real time chess game, it's the only time in my life where my mind is quiet and everything melts to the background and it's really the only time where I'm regulated and where I feel peace and where nothing's wrong. I can just exist in the moment. It honestly, it's like the meditation that everybody tried to get me to do, but it's like incredibly regulating for my brain.

Zoe Alexandra Glass:

It does train with my executive functioning because, first of all, I have a lot of social anxiety. I did not get the diagnosis of social anxiety, even though I fit the criteria, because my doctor said ASD explains it. But I still have tremendous anxiety when I go into the gym on the mat, being around in a room of crowded people, but then when I get into it, it's the only time that I've really been able to achieve truly living in the moment and having that peace of mind that I've chased my whole life. I've looked everywhere and it's the only place that I can find that reserve of quiet within myself, because there's just so much going on. And unfortunately, the only other time that my mind goes off is when I had previously engaged in self harm, so like, in terms of how to regulate myself, choosing Jiu Jitsu out of something that would be either dangerous or deleterious to myself. Finding Jiu Jitsu, moving my body is obviously a much better coping mechanism for my own personal distress, and when I'm not distressed, then it really becomes the place where I'm able to connect with other people. I talk with them. We can talk about Jiu Jitsu, or we develop deeper friendships and then, like, the more silly times can come out and we make our own inside jokes or we just have fun.

Zoe Alexandra Glass:

It's the most low pressure socializing. It's just an easy in because, no matter what gym I walk into, I have a conversation because I can say, how's your training going? Without being in a room and being like, I really don't even care to talk with other people or to make advances or socialize, and Jiu Jitsu has really been the place where it's helped me open up the best that I can and make friendships, even if they don't last. The friendships I have made within my eight years of training have come and gone. Some of them have come and gone, but they still mean as much to me as when I made them. And being able to socialize without so much fear, it just takes a lot of pressure off.

Kristen Hovet:

You mentioned meditation and it's interesting because I remember doing an episode on burnout because I was recently going through that and someone recommended, someone autistic recommended meditation. But whenever I've tried traditional sitting meditation it's almost made it worse, like I feel like it can almost, it can trigger or make a burnout experience even worse because I'm almost like focused on it and my own thoughts and sensations or something. And, similarly to you, you described how the only time you're truly, like your mind goes quiet, is when you're practicing martial arts, and for me it's high intensity interval training, like the same thing happens for me. I have to be like pounding, like on a yoga mat or something and just like, or lifting weights really heavy, or something like that, for me to actually feel meditative.

Zoe Alexandra Glass:

Honestly, Jiu Jitsu is H-I-I-T, the HIIT. It's like up and down, up and down or like moving, moving, moving, moving, flip, moving, moving, trying to pass the legs, like there's, and it's in short bursts and it's like, it's exhausting but it's so rewarding.

Kristen Hovet:

That is meditation, but it has to be like a body meditation, I guess. And I don't know, I haven't seen, because I'm always looking at research, I haven't seen anything on that for autistic people. And now I'm curious because it feels like there's, there are some autistic people who, like, can sit still and have that traditional meditation, but for so many of us, it backfires. It's actually, you used the word deleterious, which is exactly it, like it's worse for us. The other thing I wanted to make sure I covered is, like, cause I know you reached out to me shortly after you were diagnosed and then I've only been catching up with my emails. So by the time I reached out, it's been like a, now like a good, I don't know.

Zoe Alexandra Glass:

It was almost a year. I think I reached out in April or May.

Kristen Hovet:

Yeah.

Zoe Alexandra Glass:

Four weeks after my diagnosis.

Kristen Hovet:

I know you had mentioned the disability support, so would you like to focus on that?

Zoe Alexandra Glass:

I have to say that this is in Canada, this is what is available for Canadians, and I didn't know about the disability tax credit or the registered disability savings plan. My assessor, when they gave my report, they also sent me two things. They sent me a federal form and they sent me a provincial form to apply for a person with disabilities for the ministry of poverty reduction and the disability tax credit information, which is a federal program that helps people with visible or invisible disabilities reduce the amount of tax they pay because it's difficult to work or maintain work, have gainful employment. Doesn't matter, like this is for people with diabetes, this is for people with BPD, this is for people with autism, ADHD, cerebral palsy, like across the board. Your doctor has to fill it out for you, very specifically and very well because basically it gets sent to the government, the DTC, and it talks about how your disability impacts you in daily living. So as long as it's filled out accurately by your doctor and you fill out a little section of yourself, they sort of process it and what's possible is that you can pay reduced taxes going forward. But also a big thing is that they retroactively look at your work and, if it's applicable, they will reimburse the tax that you improperly paid.

Zoe Alexandra Glass:

So what happened with me is that I had struggled to work and maintain jobs since 2013. And the way that my doctor filled out the form for me was really tough to read because it was so incredibly validating of everything I've experienced but never acknowledged. But it was all in the paper, and so I waited for months, I think it was four months I waited to see what the government was going to say, and the government cleared me and accepted me for the program. And they gave me the full retroactive amount, which the excess that you can get is up to 10 years, and so I got the tax refund for up to 10 years, which amounted to over $10,000 for me. $10,000 is a life changing amount of money for me. I was able to buy socks. I was able to buy underwear. I was able to buy shoes, because my shoes were rotted. Like I had no, I didn't have shoes. I couldn't pay for groceries, I couldn't. So, like, all my basic needs started to be met. The impact of getting that money that I had already worked for coming through, it was like, there was no other feeling in the world than like having monetary safety for the first time in my life. And then,

Zoe Alexandra Glass:

so I have that, but it also goes forward. I don't have to reapply until 2028. And then I pay reduced taxes because I work in Jiu Jitsu, I'm an instructor. That's pretty much what I can do. And then for the person with disabilities, with the provincial government, this is only in BC, depending on your income, you may be eligible for the poverty reduction social program, which I am, and that gives me a percentage of money to help offset my rent costs, based on my income, through my teaching. I am also registered as a person with disabilities, so I get certain, I get help with like medications or like dental aspects, to pay for that.

Zoe Alexandra Glass:

Yeah, I just want to say, if you think there's no resources within Canada or within your specific province, it's just because someone hasn't told you about it. On top of the DTC, once you get accepted for that, you can open a registered disability savings plan which is, if you put in $1,000, the government will match you times three, and this can go on up until you're, like, 50 years old. They can also give you grants and bonds from your status and then you can start to have savings for when you're, you know, 50 years old. Maybe your parents have passed already, or whatever your situation is. Most people who are disabled or who struggle to regulate an income or have any assets, we don't have savings. It's day to day, it's week to week. I never imagined in my life I would ever be able to have a savings plan.

Zoe Alexandra Glass:

That was not in the cards, that was not the way my life was, and so, now that I have this, I'm not filled with this abject fear that, like, when I'm 50, I could be houseless, just like I narrowly escaped losing my shelter back in 2023 or 2022.

Zoe Alexandra Glass:

I can't remember, it's a blur. And so, like, some of these very real things, I've now been able to believe that I'm going to be able, one day, to get out of this survival and hopefully, like live, and be able to enjoy life and not constantly be in fear. And I don't even want to be rich, I don't care about rich. I want to be able to have food and shelter and gain a quality of life back that I've struggled my entire life to stabilize, because it's never been there. There's always been a threat of this, that, and the other thing for my pragmatic issues to just collapse. These programs are out there for Canadians, so I really wanted to tell people about this. Or ask your doctor, and if they don't know, ask another doctor. Like, keep plowing through to get what you are absolutely entitled to be supported by.

Kristen Hovet:

And I think there's an expectation that we'll go and like talk to a doctor about it or something like that. But for me, I didn't have one or she had retired, so I was just like, I'm not going to go to a random clinic and talk to a stranger about it.

Zoe Alexandra Glass:

Al so, I wanted to tell you that, like, whether you're, were you diagnosed level one?

Kristen Hovet:

Level one specifically.

Zoe Alexandra Glass:

Level one specifically. You can still benefit from OT.

Kristen Hovet:

Really?

Zoe Alexandra Glass:

Absolutely, and that's also, like, part of a big issue is that people see level one and say, oh, it's not that bad, as like, don't get me started on that line.

Kristen Hovet:

Yeah.

Zoe Alexandra Glass:

Because you need support, like it doesn't say level one, no support. Yeah, everybody is going to look different. I may have different challenges to you and vice versa, but you absolutely can benefit from occupational therapy. Anyone who thinks they may not qualify, it's not really about qualifying. It's about improving your quality of life and the things that you're personally struggling with, and a good occupational therapist is going to take you seriously and is going to try to help you with whatever you're dealing with.

Kristen Hovet:

Yeah, I think a lot of us late diagnosed level one, we kind of have this like impostor syndrome that comes up and then also we feel guilty about quote unquote, like, taking services from others. Speaking firsthand, that's kind of like my thought process. At the same time, if I didn't have a job where I could work at home, I don't think I could have a full time job, like it wouldn't be possible.

Zoe Alexandra Glass:

The environment, it's everything. Environment is everything about being able to continue, especially in terms of work. And, yeah, that's another thing, you mentioned impostor syndrome. So, I never experienced that, that's not something that came along with my experience of being late diagnosed. It was more like, yeah. The whole levels of support are so, they're very helpful, but they're also very vast because even within what would be considered L2 or moderate, there's even a spectrum within the spectrum.

Zoe Alexandra Glass:

Some people can't live on their own, or some people can work a little bit more than I can per se, or some people may not be so willing to talk. There's so much, even within all of the support levels. I just really wish that, overall, we could support each other because I just see so much crappy stuff online. And I just wanted to say that, like, I will always, I don't ever consider myself an advocate. That is a section within my disability I don't think that I can manage. But I have made it a point to take the time to listen to and consider that parents, families, caregivers are part of the autistic community and people who are moderate or high support needs or who use AAC, they are as much a part of the community as the people who can come online and make videos or be on podcasts and I will always do my best to support them.

Zoe Alexandra Glass:

Yeah, the caregivers are part of the community and I see a lot of weird stuff online saying that they shouldn't say anything because they don't know what it's like. But you got to take a step back and realize that this whole thing, it's bigger than me. And the only way that I'm going to understand my autism is if I know the history of autism, if I listen to other people who have vastly different experiences of me within autism, and if I continue to listen and read more than project my own personal beliefs, which are not even fully formed. I could be so wrong on so many counts and, like, I just want and I hope for the autistic community at large to realize a little bit more that moderate and high support needs, still, they're not stereotypes.

Kristen Hovet:

Before I let you go, I know we're going over, but is there anything that I haven't asked you about or that we haven't talked about that you wanted to make sure you discuss?

Zoe Alexandra Glass:

I guess I would like to take the time, because I mentioned at the beginning that I was working in a warehouse when I listened to some of your podcasts [episodes], and it's incredibly surreal to be, like, here on it and then thinking that someone else might be in a warehouse listening to this podcast. I wanted to say to them that, if you are thinking that something's going on, that I know the feeling of what it feels like to be trapped with no way out. And it's so terrifying to think that you may never get answers because of so many incredible barriers that are already against finding a doctor who will listen, finding a doctor period, finding a doctor who's informed, finding an assessor, and an assessor who does adults. Like, it seems like everything is absolutely stacked against you and I went through that myself. I just cannot believe I'm on the other side of that.

Zoe Alexandra Glass:

And if you are thinking about the potential that you may have autism or be autistic, I would just say to realize that what you're taking on is very serious, and that level of seriousness may not hit you until later. And I am all for responsible self diagnosis. I don't think everybody can or has to get an official assessment. It might not even be technically possible, but just have patience. Really deeply think and be prepared for things to come up that you can't prepare for. There's going to be a lot of things underneath the life that you've lived, year after year, that going and cross referencing your life over the DSM-5, as you prepare to see someone, it's going to bring up a lot of stuff. It's going to bring up a lot, and just be aware that what you're venturing into is something you've never experienced before. And it's OK if you feel that nothing's ever going to change.

Zoe Alexandra Glass:

But I'm living proof that it's possible and I truly never thought that anything would ever change again in my life. I know that I talked about suicidal ideation before. I think when it comes down to it, I really want to end on a note of hope, because I'm still autistic. I'm still struggling immensely. I just got through a period of having a dissociative episode because I was so overwhelmed with a lot of things that were going on and I was having a lot of trouble in therapy, and it's dredging up unbelievable pain from my past that I've never examined. But at the same time, like, I have hope that, in time, I'm going to be able to regulate myself better and to have a better quality of life. So I would just say, don't give up and pursue your answers as far as it takes you, and I just want to say I know what it feels like deeply. It's one of the worst feelings that I think a human can ever experience, but there is always a chance that something can change in unbelievable ways.

Kristen Hovet:

I wasn't expecting the conversation with Zoe to be as emotional as it was. I found myself after our conversation just feeling, I guess, hopeful, as Zoe had ended on a hopeful, positive note. But I also felt the heaviness of her story and also knowing just how common her story is for so many folks who are autistic and who are diagnosed later in life. So I want to thank Zoe. Huge, huge thank you, Zoe, for being my guest and just for being so open and sharing some of the hardest aspects of your journey to diagnosis and the things that you continue to experience on a daily basis. And it's a great reminder that, even though you're diagnosed, it's not like things suddenly, magically change. You're still going to have the same struggles, you're going to have, hopefully, more support, but you're still going to struggle in the same ways. It doesn't magically change you as a person. I know, for myself, the big thing was just the change in self-concept. I think that's a big one, especially for those with the level one diagnosis, because we are in that sort of, some have described it as kind of like an in-between reality, of like having one foot in the neurotypical world and one foot in this, for the majority of our lives, feeling like we don't quite ever fit in, even though we have lots of the behaviorisms and interests and some overlap and similarities with neurotypicals. But then there's this huge other part of ourselves that doesn't match or that doesn't fit, and so we feel in part like aliens our entire lives. And so, when we get that diagnosis, it's just like oh, it explains so, so much. And instead of beating ourselves up all the time, we can kind of go, oh, actually there's a reason why I was like that, there's a reason why I felt different, there's a reason why people always had these specific responses to me, and we can look back and kind of like re, almost like rewrite how we felt about ourselves in certain contexts. And for me that was a huge, huge thing.

Kristen Hovet:

You'll also notice that I have a new neon sign behind me for The Other Autism, and I live in a place where I can't quite get far enough away so that you don't see the lights. You can see the reflections of my lights and I just can't angle them a certain way in my current space to like not have that happen. I'm hoping in the future, sometime soon, I'll live in a place where I can kind of like set up my space the right way t hat I'm hoping it will one day look like, but I hope you like it. I ordered it from a person who makes neon signs and they're based in Pakistan. So The Other Autism, coming at you in neon color, care of an artist in Pakistan. Yeah. Again, a huge thank you to Zoe, and that's all I have for you today. Thank you so much for being here. Until next time, bye.

Accepting Autism Diagnosis After Lifelong Struggles
Navigating Childhood With Undiagnosed Autism
Navigating Occupational Therapy for Autistic Adults
Martial Arts and Disability Support
Autism Community Support and Understanding