February 20, 2024 • 63 mins
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.
Send in your questions or thoughts via audio or video recording for a chance to be featured on the show! Email your audio or video clips to otherautism@gmail.com through WeTransfer.
Buy me a coffee!
Buy The Other Autism merch. Use code FREESHIP for free shipping on orders over $75 USD!
The views, opinions, and experiences shared by guests on this podcast are their own and do not necessarily reflect those of the host or production team. The content is intended for informational purposes only and should not be taken as medical or professional advice. Please consult with a qualified healthcare provider before making any decisions related to your health, fitness, or wellness.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Kristen Hovet (00:00):
Hey everyone, welcome back to The Other Autism
podcast.
Today I'm speaking with Zoe, amartial arts instructor based in
Vancouver, British Columbia,but before I share our
conversation, I'd like to thankCarol and an anonymous donor,
who both used the Buy Me aCoffee link to send in a
(00:22):
one-time donation.
If you find this podcastinteresting or helpful in any
way and you'd like to do thesame, please check out the link
in the show notes that says BuyMe a Coffee.
For the price of a coffee, ortwo or three.
You can help keep this podcastgoing and growing.
The other thing you can do andif you listen to podcasts, if
(00:43):
you're a regular podcastlistener, you've probably heard
other hosts say please rate andreview, and the same is true
here.
If you have something to say,if you have feedback, leave it
in Apple Podcasts, leave it onSpotify, wherever you listen,
and give the podcast a review.
And the best thing you can doif there's an episode you really
(01:05):
like or if you'd like to sharethe whole podcast with someone,
that really helps, too, becausesharing the podcast with those
you love is truly the biggestcompliment you can give me as
someone who's making this as apassion project and really
pushing to eventually have thisbe more of a full-time gig.
Every little bit counts.
(01:27):
So if you currently don't havethe means to leave a donation,
or later I'm gonna talk aboutPatreon because I just made one
of those, if you don't have themeans to do that at this point
in time, that's totally cool, Iget it.
If you wanna support the show inother ways that are
non-monetary, leave a rating andor review, if you haven't
(01:49):
already done so.
It would mean a lot, for sure.
If you'd like to become moreinvolved with The Other Autism
and The Other Autism community,if you'd like access to
exclusive content, which I'mstill working on figuring out
what that will be, I've justlaunched The Other Autism
Patreon.
Head on over to patreon.
com/ TheO therA utism.
(02:13):
All one word.
There's also a link in the shownotes.
I think I have three members sofar, 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 chatso we can all chat with each
(02:33):
other, which I do with anothercreator that I follow, and it's
pretty interesting and funnylike people share some funny
things, so maybe we can get thatgoing.
I think I'm gonna set a goal of10.
If we get 10 members on thePatreon, I will set up the group
chat.
So yeah.
And with that, please say helloto my guest for today, Zoe.
Zoe Alexandra Glass (02:59):
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 tothat question of what preceded
or prompted the diagnosis.
The first is like the generalall my life answer, that's like
(03:24):
the scenic route.
In terms of what became the endgame of it was really prompted
by the inability to transitionback into the real world after
COVID.
So during COVID I wasn't fine,nobody was fine, but I was
(03:49):
living a type of life that Inever had access to and I never,
because I've always been livingwithin more than difficulty,
inability to keep jobs, neverbeing able to make enough money.
And during COVID I could notkeep working my three and four
(04:09):
jobs to make ends meet andeverything changed and shifted.
And everything literally gotquiet 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 inquiet all the time and like not
(04:35):
have to be working four jobs tobarely make ends meet.
When the transition from 2020 to2021 came, I basically what
happened was like in the DSM-5-TR there's like the description
of like until capabilities reachtheir maximum or before, until
(04:59):
coping mechanisms no longer work.
Like that is, basically, I wasput to transition between 2020
to 2021, back to work, and Icould not.
And to be honest, I don'treally remember 2021.
I would have to really go backbecause I have a lot of
(05:20):
dissociation with that timeperiod and then that transition
period, yeah, I don't evenremember and then that kicked
off another year where, like,the crumbling of a lot of deeper
, meaningful friendships came toan end again.
I've had mental health crises myentire life, but this was the
(05:44):
crises to end them all.
Like this was the biggest one.
Oh, and on top of this, likethis is not just personal, this
is pragmatic.
Like I had to close my businessthat was doing well.
I lost all of my income or eventhe support from the government
.
Everything went to collections.
(06:04):
I had unsurmountable debt.
I could not pay my rent.
I could not find a job.
The job that I eventually didfind was not enough, as per
usual, but then in my job, Icould barely function.
If there was like three peoplein the store, the level of
anxiety I had was so abundantand it wasn't just something
(06:28):
that I could hold inside, likepeople who were buying their art
supplies or whatever would likenotice and be like, are you
okay?
And it's like something isleaking out of me.
How can I not do these simpletasks anymore?
And so I really was trying tohold myself together while
(06:49):
literally everything, everysingle structure in my life, was
collapsing.
Yeah, it was around two years tothis day that I, for the first
time in my life, I said Zoe,something is wrong.
And I want to caveat I don'tthink autism is wrong.
I don't imply anything with mywords, but like I knew something
(07:13):
was going on and by 38, thisshould, no, this is unmanageable
.
And suicidal ideation is avery, it's a reality for me.
It's always been throughout mylife and like it was just coming
back.
But then it was starting to getvery real and very scary,
(07:37):
especially after I lost all ofmy money and I eventually got an
eviction notice.
Like it got fucking scary.
I had relied on my parents myentire 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 isgoing on and I just had it.
(07:59):
It was like, then I'll lose myhousing because I don't know
what's going on with me.
It was really at the point whenI gave up within the spring of
2022.
And I thought you know what?
This is my life and it's neverbeen different.
It is the worst right now, butthis has just been a cycle and I
(08:20):
just have to accept that thisis what life is, like not being
able to eat because I can't buygroceries, not being able to
find proper pay or, if I do finda job, having these weird
interpersonal issues come upthat end up getting me fired or
having a rancorous separationfrom a company.
(08:43):
Over and over and over and overagain.
And it's like this is just whatlife is.
I guess I accept this, and itwas literally when I had given
up trying to figure out what wasgoing on with me that like a
series of events coalesced forme and then it came into focus
(09:07):
like, like I did not pursue adiagnosis to get diagnosed.
I pursued a diagnosis initiallyto rule it out because it was
the big one.
Like out of all the things, andI've had so many connections
with people who are bipolar ordeal with depression and anxiety
(09:30):
and I was always within thecircles of these people and I
understood them on a particularlevel.
But I also knew that there's alot of stuff about certain
issues that I resonated with upto a point, up to a point, up to
a point.
And then when I started toseriously consider if autism was
(09:51):
the thing with me, I kept mydistance from it because I was
like, I will always reserve amargin for me being wrong or for
me not being able to see thefull picture.
And I kept waiting for thattime where I would hit the wall
and it would be oh, that doesn'treally fit, I see this, but I
(10:15):
don't see that.
But like the inverse happened,where it was like it just kept
getting deeper and I was likethis is it! I relate to that,
this makes sense, that makessense, holy fuck.
And then, once I started toaccumulate this idea that this
(10:35):
could be a reality, then like mymind went fuzzy and it's like
no, this can't be it.
There's no fucking way.
I have so much rage, not atanyone particularly, but it's
just like, it has such a surrealfeeling to live with an
(10:59):
invisible disability that otherpeople still saw.
I did not live a life wherepeople are like glazing me over
or like, everybody fuckingnoticed! Everybody! And whether
they want to accept that now orrationalize something away,
(11:20):
everybody in my life who I'veever had contact with has seen
it.
And it's just like, I can'tbelieve this happened because I
was listening to your podcastwhen I eventually got a job in a
warehouse.
It was not good, it was theworst.
It was the fucking worst.
(11:41):
On top of everything, I alsohave a learning disability with
math, and so the warehouse, thepremise of the job was basic
math, and I was like I ambetween a rock and a hard place.
My landlord extended, likeafter they gave the eviction
notice, I finally emailed themand then, what the classic thing
(12:03):
that everybody says, why didn'tyou communicate with me?
Why didn't you say this?
Why?
You can't, you can't notcommunicate.
And it was so difficult for meto like tell anyone anything
because I didn't know how to.
And so eventually she gave mesome space and we worked out a
(12:24):
payment plan, once I did get ajob, to try to get out of the
hole that I was in.
And I was in the warehouse and Ilistened to enough podcasts and
I had enough inquiry that I waslike, this is life or death for
(12:44):
me.
This is not because I'mcurious, if I can find a reason
that I can live again or have asecond chance at life, like I
need help and I need to findsomeone who can help me because
nobody ever helped me and that'sthe reality for me.
(13:08):
That's what this was like.
And then it was a long process.
It was like a year process thatthings fell into place which
was not comfortable, financiallywise.
T here's just so many detailsand moving parts that I cannot
(13:31):
possibly put together on a map.
But it was, basically, it wasn'treally a choice for me.
It was imperative because, pastthe point of reading books or
seeing things on the internet,it was like I can't, I can't
just sit with this, I needsomeone to rule it out.
(13:52):
And then I found someone andagain it like went the other
direction.
I was given, with a therapist,I had to change therapists
because the one who I brought itup 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 layerbecause then I left my therapist
(14:16):
I had been with for sevenyears, but I was getting worse
all the time, and so like, theamount of stuff that has
happened within a year and ahalf of my life has turned
absolutely upside down andinside out.
Kristen Hovet (14:30):
I'm just taking notes, too, as you speak, and
one thing you mentioned wasearlier on in your life, like
growing up, so that's a part ofit, and all the times that
someone could have seen it andthey didn't or if they did, they
didn't say anything.
So I feel like that's a failure, a systemic failure, and that
(14:51):
you were failed over and overand over again and that's such a
common story.
I definitely experienced thatand so many other people that
I've spoken with haveexperienced that.
Were there any key things, kindof experiences growing up, or
times when you feel like itcould have been recognized, or
things that you specificallyrecall?
Zoe Alexandra Glass (15:12):
There's a lot of significant, obvious
things, but it's so difficultbecause, like, the first thing
you want to do is be able toplace blame.
In any kind of situation, youwant some kind of accountability
pinpoint.
I think one of the most complexthings that I'm grieving now is
(15:32):
that there's not just one thingthat I can point to, and my
therapist has helped me a lotwith this because it was going
to be very difficult for someonelike myself to be recognized
back in, I was born in 84.
So like mid 80s to maybe myhigh school years, like 2000s, I
(15:54):
was taken to a psychiatristwhen 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 theautism was not like it was
still, it was kind of likealmost forget it unless I was
expressing my meltdowns and nothiding them.
(16:17):
I feel that if I had, and thisgoes into blaming myself
territory, because I wasconsistently having meltdowns,
but I was very good at hidingthem or not really showing the
extent of my daily anxiety.
And if I had just screamed more, if I had just thrown the
(16:39):
things that I wanted to throw, Idid throw things sometimes and,
you know, that got me introuble real quick at school.
So like for me it wasn't goingto be possible, especially when
I saw a psychiatrist who, like Iunderstand that autism may have
been not on the radar back inlike 1999.
(17:00):
But like he didn't even pick upOCD.
That's incredible.
I've had OCD since around eightyears old.
The fact that I spent an hourwith this person for an intake
and they couldn't even clock OCDand instead they told my
parents that I was delusional.
And so, I have both sides oflike, I've fought for this place
(17:26):
in my life for so long and Ireally empathize with people who
cannot find doctors who willlisten to them because I've had
that experience.
Or even doctors who do adultassessments and then can't take
you, and I understand thevitriol that people have towards
that system.
But also I have experienced theother side as well and I want
(17:51):
to tell people, good doctors doexist and thorough practitioners
and clinicians with goodassessments do exist, but it
might take a lifetime to findthem.
And I think I got off theoriginal question.
Oh, about people seeing me.
It's just so, it's so intense.
(18:13):
I have pictures of like, Iwould line up all my, you know,
I'd organize my toys in thecertain way, or I would,
one thing I did was likerepetitive audio play.
I had a little player piano andit was a running joke in my
house for forever because therewas one song on the little
player piano I would just playover and over and over again.
(18:36):
My dad was like, it drove menuts, you just kept pressing the
button and the song would playforever and ever.
And so like, significantrepetitive behaviors throughout
my life, which are both like,with autism, OCD, the
repetitiveness is different, itcomes from a different well.
Like, they're very distinct forme.
(18:59):
My obsessive interests, myrestricted interests, people
noticed, people noticed, andlike, that's just Zoe.
They went into uncomfortableterritory.
My restricted interests werenot limited to objects or music,
it was also people.
And so that's another layer oflike feeling a lot of confusion
(19:20):
or being told that like, you'rebeing 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, youknow, to an outside person.
An interesting thing is like, ingrade school, in retrospect I
think I had a crush on a boy butI didn't know how to talk to
(19:44):
him or to play with him or bearound him more.
And his mother drove a Volvocar, like the old sort of old
school 80s Volvos have aspecific like boxy look.
They have a very specific lookand I think, because I liked him
and his mom had a Volvo, Ipicked Volvo as this car that I
(20:07):
was intensely interested in andthen I started counting them on
the highway.
I would look for Volvoseverywhere I went.
So like my like crush for, likea human person, the way that I
was able to express thataffection was through care for
(20:27):
an object and to keep track ofall these cars.
I'd be in the car counting one,two, three, and my parents were
just like, oh, she's countingher Volvos.
Just to touch on my parents,they have expressed a lot of
guilt regarding this.
(20:48):
I don't think they've reallyprocessed anything about this
yet because it's made incredibleripples, ripple effects
throughout the family dynamic.
My mom mentioned a couple ofChristmases ago that she used to
cut the tags out of my clothesbecause I asked her to.
(21:08):
And I was like, you never toldme this.
She's like, well, it wasn't abig deal.
I was like, this is a big deal.
Then she mentioned, well, youjust don't understand how much
we accommodated you.
I was like, do you hear whatyou're saying?
My mind is exploding right now.
(21:30):
What are you talking about?
I don't have these memories.
I've locked them away in aniron box.
I didn't start remembering mychildhood until I started going
to therapy with an ASD clinician.
That's like another level thatI am currently dealing with.
All these intrusive memoriesthat I have never processed are
coming back now full force.
(21:51):
It's too much.
But even with the Volvo thing,my parents never made me feel
weird for it, to the extent thatmy dad found a Volvo graveyard
a half hour outside of our town.
For one day, he's like, I wantto take you somewhere.
It was just a Volvo mechanicwith a sprawling yard with all
(22:15):
the Volvos that were in repair.
There were hundreds of them andI freaked out! I couldn't
believe it! My parents, it'ssuch a complex thing to process
because they saw a lot ofthings, but they didn't know
what it was or they didn't makeit like it was too weird.
They tried to find, they triedto give me the Volvo lot so I
(22:41):
could embrace this fascinationwith this car.
And, by the way, I didn't havethe self-awareness about the
connection to the crush and thecar.
This came out from my therapyand from considering how I
project, my emotions are morecomfortable around objects or
gift giving, or without verbalexchange or touch or anything
(23:04):
like that.
Kristen Hovet (23:07):
Are you comfortable sharing what your
diagnosis is specifically?
I know you shared with me thatit's level two.
Zoe Alexandra Glass (23:14):
I want to technically say that I was not
provided a number level in myreport.
I have autism spectrum disorderwithout accompanying language
or intellectual impairment.
I have persistent depressivedisorder.
I have obsessive compulsivedisorder, generalized anxiety
(23:35):
disorder, and the specifiedlearning disability in
mathematics.
And that's a lot.
Where is my camera?
That's five! But within myreport, which was about 30 pages
I think, the language withinthe report aligns with a
(24:00):
diagnostic of more level twosupports, not only with their
recommendations, which were solengthy, I couldn't process how
much accommodation they gave me— accommodations for the
workspace, they gave meaccommodations should I go back
to school, and then they gave mepersonal recommendations which
(24:22):
I thought, reading them, I waslike, this is excessive.
Holy crap, have I needed thisall this time?
And then there was language inmy report that has, on the
different tests that I did, theADOS I was average, but with the
CARS-2-HF I scored moderate.
(24:42):
And then with the SRS-2, whichmy therapist gave me prior to,
he was screening me for thereferral to the assessment, and
also the SRS-2 that was given tome in my assessment, both had a
score of severe.
And there is so much morelanguage in this report that
(25:04):
points to a moderate, forargument's sake,
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 peopleonline, I don't relate to a lot
of the experiences that I see alot of YouTubers expressing or
(25:26):
people on Reddit.
The forums that I find the mostpragmatic for myself are the
ones that are geared to moremoderate support needs people,
people who have a lot ofpragmatic issues like myself,
which is why I'm in occupationaltherapy.
People like myself that, like,the whole relationship thing or
(25:50):
partnership or marriage oranything like that.
It really bothers me when I seea lot of popular discussions
saying how not having a marriageor anything like that is a
stereotype of autism, and it'slike you need to step back
before you start, not you, butbefore people start making
(26:12):
sweeping generalizations aboutthe autistic community as a
whole just because you werenever seen.
And I say that for myself aswell as for everyone else.
Everybody wants to be seen andeverybody deserves to have their
pain recognized, but not at theexpense of being laterally
(26:32):
ableist or denying the fact thata lot of these stereotypes are
people, moderate and highsupport needs individuals exist
and the community existed waybefore I ever entered into it.
Even though I know I havedifferent support needs or
(26:54):
perspectives, or difficulty evenunderstanding why someone would
want to have a relationship,because for me it's just a waste
of time.
And I say that, like, I haveall my interests that I like, I
only have so much energy.
I have tried but I just didn'tget it.
I don't get it and that's OK.
(27:17):
And I'm not a stereotypebecause having a marriage is of
no interest to me.
I'm just in the spectrum withall of you.
I just like that's justsomething that really wears on
me because I understand howpeople really want to be seen,
but it can't be at the expenseof pretending that all aspects
(27:42):
of people in the autism spectrumdon't exist.
Just because you experiencedsomething doesn't mean that
other people are not out thereexperiencing something different
.
Kristen Hovet (27:53):
You mentioned occupational therapy, so in what
ways has that helped you?
Zoe Alexandra Glass (28:00):
It's helping me understand how my
executive and adaptivefunctioning affect my daily life
because for decades I was notable to brush my teeth or
maintain dental hygiene, whichled to a lot of dental rot and a
lot of issues with my teeth.
Really, it's trying to developsystems for myself so that I can
(28:25):
take care of my basic needs,brushing my teeth, maintaining
dental hygiene.
I struggled a lot with flossingbecause of sensory issues which
I never correlated, but then Ihad more information.
I was like, oh, I see how thishappened.
It was tough to tell myoccupational therapist.
(28:45):
I was like, it's not about, oh,it's a drag on time.
Like putting the floss betweenmy teeth is one of the most
disgusting feelings and I can'tdo it.
I used to have a boyfriendback, I can't remember what year
it was, a long, long time ago,and he was like, how do you not
(29:05):
floss?
It's just like you do this, youdo this, and I was like, don't
put that thing near me, like Ican't do it, and he was like
jokingly with me.
But now I think back and it hasa completely different lens
over it.
Occupational therapy is alsohelping me, I struggle with
eating properly or hydrating,really trying to have visual
(29:27):
cues for these momentsthroughout my day.
That is eventually going togive me energy and battery to be
able to show up for the parttime work that I do have and
have my brain, on a verybiological level, function, with
enough steam and energy.
(29:48):
Dealing with my sleepingpatterns, also trying to like,
there were times in occupationaltherapy where I was still
incredibly distressed and I waslike engaging in self injurious
behavior and I didn't notice itand my occupational therapist
was like, you are doing X rightnow.
Do you know that that'shappening?
(30:09):
And it was like, no, I don'tknow all these things and I
still don't feel like I'm reallycommunicating what occupational
therapy is doing for me.
But I was always asking for OTwhen I was in therapy, like when
I was with my past therapist.
He was trying to get me tomeditate, go meta and seek
(30:33):
within yourself, and I was like,I can't brush my teeth.
Can you tell me how to brush myteeth?
I can't hold a job.
How is meditation going to helpme not be houseless?
And I was asking for these verypragmatic things that
(30:54):
occupational therapy is nowaddressing.
But I didn't know whatoccupational therapy was for
autism and also to that extentmany autistic people have very
differing experiences in OT.
This is just mine.
They can work also with motorskills and stuff like that.
But mine is more specificallytargeted to my executive and
(31:18):
adaptive functioning so that Ican build a scaffold that
hopefully in the future I canwork full time and not burn out,
because I did burn out when Iwas at the warehouse and I had
to take a medical leave.
Like it's on record record, Iwas away for two weeks, signed
off by my psychologist, becauseI was burned out.
(31:39):
So it's also working to changemy relationship to food, which
is like another section.
Like I've had disordered eatingmy whole life.
I've had really restrictiveeating habits.
Also, cognitively, I don't gethungry, so, like the first thing
we worked on, he's like how'syour breakfast?
I don't have breakfast becauseif I get up at eight then I'm
(32:02):
not hungry till 10.
But once it hits 10, breakfastis over and he was like, what do
you mean?
I was like, it's past breakfasttime, so I can't eat until 12,
which is lunch.
And he was like, do you eataccording to cognitive prompts?
And I was like, yeah, I don'tknow how, like, what else is
there?
Then if I miss lunch and lunchis from 12 to 1:30 ish, but if I
(32:28):
go like quarter to two, I can'thave lunch and he was like,
okay, well.
And that's like the rigidity,the rigid thinking, which is
impacting me in a very realbodily way, and he also helps me
, he's trying to like massagethis out so that I can practice
(32:49):
flexibility, but also not getdistressed when I change my
rigid thinking towards eating.
It's a very long process.
It's been up and down, but it'smade a lot of inroads in my
daily quality of life so far.
Kristen Hovet (33:09):
That's great.
I have so many things to say.
One of them is, I didn't knowwhat occupational therapy was
for the longest time and it cameafter my diagnosis and then
when I did find out about it, Ithought it was a thing that kids
get.
And when I was diagnosed myself, occupational therapy never
came up, because I'm quoteunquote what they used to call
high functioning, level one.
(33:30):
But things for me that I wish Ihad learned were things like
finances and I also have alearning 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.
The other thing that came tomind, and this is for
(33:52):
professionals listening, likewhen someone comes to you and
they have disordered eating inany way, shape, or form and
they're not diagnosed autisticyet, please get them an
assessment because the overlapis 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 manyyears for that ever to be on the
(34:13):
radar for people, like theautism thing.
Zoe Alexandra Glass (34:16):
I want to mention, about the eating,
because another connection Imade, so I had issues with my
weight when I was pretty young.
It happened around 10.
Like I mean, I gained a lot ofweight in a very short amount of
time.
I think it was a sensory issuething, now that I reflect back.
(34:36):
When I was a young teenager, Idecided that I wanted to lose
some weight and I tried WeightWatchers and it was unbelievably
successful for me.
I lost 55 pounds over a courseof time, I think it was like a
year.
It just worked for me.
Like it worked.
(34:57):
It wasn't until I revisited thatera of my life, knowing what I
know now about myself, and I waslike, this worked because it
was all about systems andstructures and routine and
predictability.
Back then they had like, I don'tknow what they do now, but it
was all about points andordering, like structuring your
(35:19):
food and knowing when was goingto happen, how, and how many
points.
Everything was just designedfor me and I didn't have to
think about it because it wasalready systemized for me and it
was just so easy because thatis naturally how my brain
(35:40):
understands information.
And at the same time it wasvery restrictive in a way.
So like there's lots of elementsthat play for me back then that
were really, really beneficialto what my personal goals were,
but in a way that was invisibleto me, like, I didn't know why
it was working or how I didn'thave trouble using their
(36:04):
strategies.
But now, as I reflect back onhow things in my life are more
comfortable and easy wheneverything is set out and
everything is regimented andpredictable, and this means that
and that means this, and ifthis just happens the way I know
that it's going to happen, thisis going to be the result.
And so that level of controlover, like, the relationship I
(36:29):
had with food really helped me.
There were other things, therewere like dark sides to it as
well, but just for that,realizing how I structured my
food, I was like, no wonder thatworked for me because that is
what I'm seeking out of life allthe time, that rigidity.
It was just so easy to slipinto it because, with my own
(36:52):
disordered eating, it was just amess and that gave me some kind
of construct to work within andthen it was a little bit
healing for me and within myrelationship with food, which is
still a struggle.
Kristen Hovet (37:09):
I guess to switch gears before we run out of
time, I wanted to talk aboutyour martial arts, so that was
one of the things you firstmentioned when you reached out
to me.
So I know you practice, I'mgoing to say it wrong, Brazilian
Jiu Jitsu.
Zoe Alexandra Glass (37:23):
No, yeah, that's it.
Kristen Hovet (37:25):
That's it, okay! Or you said BJJ for short.
Can you share more about howyou got into your martial arts
and also how this practice hashelped you in the context of
being autistic?
Zoe Alexandra Glass (37:37):
So I started Jiu Jitsu far before,
seven years, seven years beforeany of this cropped up for me.
I liked it because it'sbasically your problem solving
in real time with other people'sbodies, trying to flip them,
trying to pass their legs,trying to get to their back.
Beyond it being playful and areally intense way to work out,
(38:03):
it's so intense, like it's just,it's nothing, there's nothing
else like it.
Like there's no jog I could goon, there's no elliptical I
could train on that is like,will replace the feeling and the
adrenaline and the rush of whatJiu Jitsu is.
But also, because it's such areal time chess game, it's the
(38:27):
only time in my life where mymind is quiet and everything
melts to the background and it'sreally the only time where I'm
regulated and where I feel peaceand where nothing's wrong.
I can just exist in the moment.
(38:49):
It honestly, it's like themeditation that everybody tried
to get me to do, but it's likeincredibly regulating for my
brain.
It does train with my executivefunctioning because, first of
all, I have a lot of socialanxiety.
I did not get the diagnosis ofsocial anxiety, even though I
fit the criteria, because mydoctor said ASD explains it.
(39:13):
But I still have tremendousanxiety when I go into the gym
on the mat, being around in aroom of crowded people, but then
when I get into it, it's theonly time that I've really been
able to achieve truly living inthe moment and having that peace
of mind that I've chased mywhole life.
(39:36):
I've looked everywhere and it'sthe only place that I can find
that reserve of quiet withinmyself, because there's just so
much going on.
And unfortunately, the onlyother time that my mind goes off
is when I had previouslyengaged in self harm, so like,
(40:01):
in terms of how to regulatemyself, choosing Jiu Jitsu out
of something that would beeither dangerous or deleterious
to myself.
Finding Jiu Jitsu, moving mybody is obviously a much better
coping mechanism for my ownpersonal distress, and when I'm
(40:24):
not distressed, then it reallybecomes the place where I'm able
to connect with other people.
I talk with them.
We can talk about Jiu Jitsu, orwe develop deeper friendships
and then, like, the more sillytimes can come out and we make
our own inside jokes or we justhave fun.
It's the most low pressuresocializing.
(40:46):
It's just an easy in because,no matter what gym I walk into,
I have a conversation because Ican say, how's your training
going?
Without being in a room andbeing like, I really don't even
care to talk with other peopleor to make advances or socialize
, and Jiu Jitsu has really beenthe place where it's helped me
(41:08):
open up the best that I can andmake friendships, even if they
don't last.
The friendships I have madewithin 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 socializewithout so much fear, it just
(41:30):
takes a lot of pressure off.
Kristen Hovet (41:33):
You mentioned meditation and it's interesting
because I remember doing anepisode on burnout because I was
recently going through that andsomeone recommended, someone
autistic recommended meditation.
But whenever I've triedtraditional sitting meditation
it's almost made it worse, likeI feel like it can almost, it
can trigger or make a burnoutexperience even worse because
(41:56):
I'm almost like focused on itand my own thoughts and
sensations or something.
And, similarly to you, youdescribed how the only time
you're truly, like your mindgoes quiet, is when you're
practicing martial arts, and forme it's high intensity interval
training, like the same thinghappens for me.
I have to be like pounding,like on a yoga mat or something
(42:18):
and just like, or liftingweights really heavy, or
something like that, for me toactually feel meditative.
Zoe Alexandra Glass (42:28):
Honestly, Jiu Jitsu is H-I-I-T, the HIIT.
It's like up and down, up anddown or like moving, moving,
moving, moving, flip, moving,moving, trying to pass the legs,
like there's, and it's in shortbursts and it's like, it's
exhausting but it's so rewarding.
Kristen Hovet (42:43):
That is meditation, but it has to be
like a body meditation, I guess.
And I don't know, I haven'tseen, because I'm always looking
at research, I haven't seenanything on that for autistic
people.
And now I'm curious because itfeels like there's, there are
some autistic people who, like,can sit still and have that
traditional meditation, but forso many of us, it backfires.
It's actually, you used theword deleterious, which is
(43:05):
exactly it, like it's worse forus.
The other thing I wanted tomake sure I covered is, like,
cause I know you reached out tome shortly after you were
diagnosed and then I've onlybeen 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 (43:23):
It was almost a year.
I think I reached out in Aprilor May.
Kristen Hovet (43:26):
Yeah.
Zoe Alexandra Glass (43:27):
Four weeks after my diagnosis.
Kristen Hovet (43:29):
I know you had mentioned the disability support
, so would you like to focus onthat?
Zoe Alexandra Glass (43:33):
I have to say that this is in Canada, this
is what is available forCanadians, and I didn't know
about the disability tax creditor the registered disability
savings plan.
My assessor, when they gave myreport, they also sent me two
things.
They sent me a federal form andthey sent me a provincial form
(43:55):
to apply for a person withdisabilities for the ministry of
poverty reduction and thedisability tax credit
information, which is a federalprogram that helps people with
visible or invisibledisabilities reduce the amount
of tax they pay because it'sdifficult to work or maintain
(44:19):
work, have gainful employment.
Doesn't matter, like this isfor people with diabetes, this
is for people with BPD, this isfor people with autism, ADHD,
cerebral palsy, like across theboard.
Your doctor has to fill it outfor you, very specifically and
(44:39):
very well because basically itgets sent to the government, the
DTC, and it talks about howyour disability impacts you in
daily living.
So as long as it's filled outaccurately by your doctor and
you fill out a little section ofyourself, they sort of process
(45:00):
it and what's possible is thatyou can pay reduced taxes going
forward.
But also a big thing is thatthey retroactively look at your
work and, if it's applicable,they will reimburse the tax that
you improperly paid.
So what happened with me is thatI had struggled to work and
(45:23):
maintain jobs since 2013.
And the way that my doctorfilled out the form for me was
really tough to read because itwas so incredibly validating of
everything I've experienced butnever acknowledged.
But it was all in the paper,and so I waited for months, I
think it was four months Iwaited to see what the
(45:44):
government was going to say, andthe government cleared me and
accepted me for the program.
And they gave me the fullretroactive amount, which the
excess that you can get is up to10 years, and so I got the tax
refund for up to 10 years, whichamounted to over $10,000 for me
(46:04):
.
$10,000 is a life changingamount 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 haveshoes.
I couldn't pay for groceries, Icouldn't.
So, like, all my basic needsstarted to be met.
The impact of getting thatmoney that I had already worked
(46:25):
for coming through, it was like,there was no other feeling in
the world than like havingmonetary safety for the first
time in my life.
And then,so I have that, but it also goes
forward.
I don't have to reapply until2028.
And then I pay reduced taxesbecause I work in Jiu Jitsu, I'm
(46:48):
an instructor.
That's pretty much what I cando.
And then for the person withdisabilities, with the
provincial government, this isonly in BC, depending on your
income, you may be eligible forthe poverty reduction social
program, which I am, and thatgives me a percentage of money
(47:11):
to help offset my rent costs,based on my income, through my
teaching.
I am also registered as aperson with disabilities, so I
get certain, I get help withlike medications or like dental
aspects, to pay for that.
Yeah, I just want to say, if youthink there's no resources
within Canada or within yourspecific province, it's just
(47:35):
because someone hasn't told youabout it.
On top of the DTC, once you getaccepted for that, you can open
a registered disability savingsplan which is, if you put in
$1,000, the government willmatch you times three, and this
can go on up until you're, like,50 years old.
(47:57):
They can also give you grantsand bonds from your status and
then you can start to havesavings for when you're, you
know, 50 years old.
Maybe your parents have passedalready, or whatever your
situation is.
Most people who are disabled orwho struggle to regulate an
(48:18):
income or have any assets, wedon't have savings.
It's day to day, it's week toweek.
I never imagined in my life Iwould ever be able to have a
savings plan.
That was not in the cards, thatwas not the way my life was, and
so, now that I have this, I'mnot filled with this abject fear
that, like, when I'm 50, Icould be houseless, just like I
(48:42):
narrowly escaped losing myshelter back in 2023 or 2022.
I can't remember, it's a blur.
And so, like, some of thesevery real things, I've now been
able to believe that I'm goingto be able, one day, to get out
of this survival and hopefully,like live, and be able to enjoy
(49:05):
life and not constantly be infear.
And I don't even want to berich, I don't care about rich.
I want to be able to have foodand shelter and gain a quality
of life back that I've struggledmy entire life to stabilize,
(49:25):
because it's never been there.
There's always been a threat ofthis, that, and the other thing
for my pragmatic issues to justcollapse.
These programs are out therefor Canadians, so I really
wanted to tell people about this.
Or ask your doctor, and if theydon't know, ask another doctor.
Like, keep plowing through toget what you are absolutely
(49:50):
entitled to be supported by.
Kristen Hovet (49:53):
And I think there's an expectation that
we'll go and like talk to adoctor about it or something
like that.
But for me, I didn't have oneor she had retired, so I was
just like, I'm not going to goto a random clinic and talk to a
stranger about it.
Zoe Alexandra Glass (50:09):
Al so, I wanted to tell you that, like,
whether you're, were youdiagnosed level one?
Kristen Hovet (50:12):
Level one specifically.
Zoe Alexandra Glass (50:14):
Level one specifically.
You can still benefit from OT.
Kristen Hovet (50:18):
Really?
Zoe Alexandra Glass (50:19):
Absolutely, and that's also, like, part of
a big issue is that people seelevel one and say, oh, it's not
that bad, as like, don't get mestarted on that line.
Kristen Hovet (50:28):
Yeah.
Zoe Alexandra Glass (50:29):
Because you need support, like it doesn't
say level one, no support.
Yeah, everybody is going tolook different.
I may have different challengesto you and vice versa, but you
absolutely can benefit fromoccupational therapy.
Anyone who thinks they may notqualify, it's not really about
qualifying.
It's about improving yourquality of life and the things
(50:50):
that you're personallystruggling with, and a good
occupational therapist is goingto take you seriously and is
going to try to help you withwhatever you're dealing with.
Kristen Hovet (50:59):
Yeah, I think a lot of us late diagnosed level
one, we kind of have this likeimpostor syndrome that comes up
and then also we feel guiltyabout quote unquote, like,
taking services from others.
Speaking firsthand, that's kindof like my thought process.
At the same time, if I didn'thave a job where I could work at
home, I don't think I couldhave a full time job, like it
(51:22):
wouldn't be possible.
Zoe Alexandra Glass (51:23):
The environment, it's everything.
Environment is everything aboutbeing able to continue,
especially in terms of work.
And, yeah, that's anotherthing, you mentioned impostor
syndrome.
So, I never experienced that,that's not something that came
along with my experience ofbeing late diagnosed.
It was more like, yeah.
(51:45):
The whole levels of support areso, they're very helpful, but
they're also very vast becauseeven within what would be
considered L2 or moderate,there's even a spectrum within
the spectrum.
Some people can't live on theirown, or some people can work a
little bit more than I can perse, or some people may not be so
(52:10):
willing to talk.
There's so much, even withinall of the support levels.
I just really wish that,overall, we could support each
other because I just see so muchcrappy stuff online.
And I just wanted to say that,like, I will always, I don't
ever consider myself an advocate.
(52:30):
That is a section within mydisability I don't think that I
can manage.
But I have made it a point totake the time to listen to and
consider that parents, families,caregivers are part of the
autistic community and peoplewho are moderate or high support
(52:51):
needs or who use AAC, they areas much a part of the community
as the people who can comeonline and make videos or be on
podcasts and I will always do mybest to support them.
Yeah, the caregivers are part ofthe community and I see a lot
of weird stuff online sayingthat they shouldn't say anything
(53:13):
because they don't know whatit's like.
But you got to take a step backand realize that this whole
thing, it's bigger than me.
And the only way that I'm goingto understand my autism is if I
know the history of autism, ifI listen to other people who
have vastly differentexperiences of me within autism,
(53:35):
and if I continue to listen andread more than project my own
personal beliefs, which are noteven fully formed.
I could be so wrong on so manycounts and, like, I just want
and I hope for the autisticcommunity at large to realize a
(53:56):
little bit more that moderateand high support needs, still,
they're not stereotypes.
Kristen Hovet (54:03):
Before I let you go, I know we're going over, but
is there anything that Ihaven't asked you about or that
we haven't talked about that youwanted to make sure you discuss
?
Zoe Alexandra Glass (54:11):
I guess I would like to take the time,
because I mentioned at thebeginning that I was working in
a warehouse when I listened tosome of your podcasts
[episodes], and it's incrediblysurreal to be, like, here on it
and then thinking that someoneelse might be in a warehouse
(54:31):
listening to this podcast.
I wanted to say to them that,if you are thinking that
something's going on, that Iknow the feeling of what it
feels like to be trapped with noway out.
And it's so terrifying to thinkthat you may never get answers
(54:55):
because of so many incrediblebarriers that are already
against finding a doctor whowill listen, finding a doctor
period, finding a doctor who'sinformed, finding an assessor,
and an assessor who does adults.
Like, it seems like everythingis absolutely stacked against
(55:16):
you and I went through thatmyself.
I just cannot believe I'm onthe other side of that.
And if you are thinking aboutthe potential that you may have
autism or be autistic, I wouldjust say to realize that what
you're taking on is veryserious, and that level of
(55:37):
seriousness may not hit youuntil later.
And I am all for responsibleself diagnosis.
I don't think everybody can orhas to get an official
assessment.
It might not even betechnically possible, but just
have patience.
Really deeply think and beprepared for things to come up
(56:03):
that you can't prepare for.
There's going to be a lot ofthings underneath the life that
you've lived, year after year,that going and cross referencing
your life over the DSM-5, asyou prepare to see someone, it's
going to bring up a lot ofstuff.
It's going to bring up a lot,and just be aware that what
(56:26):
you're venturing into issomething you've never
experienced before.
And it's OK if you feel thatnothing's ever going to change.
But I'm living proof that it'spossible and I truly never
thought that anything would everchange again in my life.
(56:46):
I know that I talked aboutsuicidal ideation before.
I think when it comes down toit, I really want to end on a
note of hope, because I'm stillautistic.
I'm still struggling immensely.
I just got through a period ofhaving a dissociative episode
because I was so overwhelmedwith a lot of things that were
(57:07):
going on and I was having a lotof trouble in therapy, and it's
dredging up unbelievable painfrom my past that I've never
examined.
But at the same time, like, Ihave hope that, in time, I'm
going to be able to regulatemyself better and to have a
better quality of life.
So I would just say, don't giveup and pursue your answers as
(57:33):
far as it takes you, and I justwant to say I know what it feels
like deeply.
It's one of the worst feelingsthat I think a human can ever
experience, but there is alwaysa chance that something can
change in unbelievable ways.
Kristen Hovet (57:51):
I wasn't expecting the conversation with
Zoe to be as emotional as it was.
I found myself after ourconversation just feeling, I
guess, hopeful, as Zoe had endedon a hopeful, positive note.
But I also felt the heavinessof her story and also knowing
(58:18):
just how common her story is forso many folks who are autistic
and who are diagnosed later inlife.
So I want to thank Zoe.
Huge, huge thank you, Zoe, forbeing my guest and just for
being so open and sharing someof the hardest aspects of your
journey to diagnosis and thethings that you continue to
(58:41):
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 thesame 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 youas a person.
(59:04):
I know, for myself, the bigthing was just the change in
self-concept.
I think that's a big one,especially for those with the
level one diagnosis, because weare in that sort of, some have
described it as kind of like anin-between reality, of like
having one foot in theneurotypical world and one foot
(59:26):
in this, for the majority of ourlives, feeling like we don't
quite ever fit in, even thoughwe have lots of the behaviorisms
and interests and some overlapand similarities with
neurotypicals.
But then there's this hugeother part of ourselves that
doesn't match or that doesn'tfit, and so we feel in part like
(59:48):
aliens our entire lives.
And so, when we get thatdiagnosis, it's just like oh, it
explains so, so much.
And instead of beatingourselves up all the time, we
can kind of go, oh, actuallythere's a reason why I was like
that, there's a reason why Ifelt different, there's a reason
why people always had thesespecific responses to me, and we
(01:00:12):
can look back and kind of likere, almost like rewrite how we
felt about ourselves in certaincontexts.
And for me that was a huge,huge thing.
You'll also notice that I have anew neon sign behind me for The
Other Autism, and I live in aplace where I can't quite get
(01:00:34):
far enough away so that youdon't see the lights.
You can see the reflections ofmy lights and I just can't angle
them a certain way in mycurrent 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 likeset up my space the right way t
(01:00:55):
hat I'm hoping it will one daylook like, but I hope you like
it.
I ordered it from a person whomakes neon signs and they're
based in Pakistan.
So The Other Autism, coming atyou 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
(01:01:18):
today.
Thank you so much for beinghere.
Until next time, bye.
Hey everyone, welcome back to The Other Autism
podcast.
Today I'm speaking with Zoe, amartial arts instructor based in
Vancouver, British Columbia,but before I share our
conversation, I'd like to thankCarol and an anonymous donor,
who both used the Buy Me aCoffee link to send in a
(00:22):
one-time donation.
If you find this podcastinteresting or helpful in any
way and you'd like to do thesame, please check out the link
in the show notes that says BuyMe a Coffee.
For the price of a coffee, ortwo or three.
You can help keep this podcastgoing and growing.
The other thing you can do andif you listen to podcasts, if
(00:43):
you're a regular podcastlistener, you've probably heard
other hosts say please rate andreview, and the same is true
here.
If you have something to say,if you have feedback, leave it
in Apple Podcasts, leave it onSpotify, wherever you listen,
and give the podcast a review.
And the best thing you can doif there's an episode you really
(01:05):
like or if you'd like to sharethe whole podcast with someone,
that really helps, too, becausesharing the podcast with those
you love is truly the biggestcompliment you can give me as
someone who's making this as apassion project and really
pushing to eventually have thisbe more of a full-time gig.
Every little bit counts.
(01:27):
So if you currently don't havethe means to leave a donation,
or later I'm gonna talk aboutPatreon because I just made one
of those, if you don't have themeans to do that at this point
in time, that's totally cool, Iget it.
If you wanna support the show inother ways that are
non-monetary, leave a rating andor review, if you haven't
(01:49):
already done so.
It would mean a lot, for sure.
If you'd like to become moreinvolved with The Other Autism
and The Other Autism community,if you'd like access to
exclusive content, which I'mstill working on figuring out
what that will be, I've justlaunched The Other Autism
Patreon.
Head on over to patreon.
com/ TheO therA utism.
(02:13):
All one word.
There's also a link in the shownotes.
I think I have three members sofar, 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 chatso we can all chat with each
(02:33):
other, which I do with anothercreator that I follow, and it's
pretty interesting and funnylike people share some funny
things, so maybe we can get thatgoing.
I think I'm gonna set a goal of10.
If we get 10 members on thePatreon, I will set up the group
chat.
So yeah.
And with that, please say helloto my guest for today, Zoe.
Zoe Alexandra Glass (02:59):
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 tothat question of what preceded
or prompted the diagnosis.
The first is like the generalall my life answer, that's like
(03:24):
the scenic route.
In terms of what became the endgame of it was really prompted
by the inability to transitionback into the real world after
COVID.
So during COVID I wasn't fine,nobody was fine, but I was
(03:49):
living a type of life that Inever had access to and I never,
because I've always been livingwithin more than difficulty,
inability to keep jobs, neverbeing able to make enough money.
And during COVID I could notkeep working my three and four
(04:09):
jobs to make ends meet andeverything changed and shifted.
And everything literally gotquiet 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 inquiet all the time and like not
(04:35):
have to be working four jobs tobarely make ends meet.
When the transition from 2020 to2021 came, I basically what
happened was like in the DSM-5-TR there's like the description
of like until capabilities reachtheir maximum or before, until
(04:59):
coping mechanisms no longer work.
Like that is, basically, I wasput to transition between 2020
to 2021, back to work, and Icould not.
And to be honest, I don'treally remember 2021.
I would have to really go backbecause I have a lot of
(05:20):
dissociation with that timeperiod and then that transition
period, yeah, I don't evenremember and then that kicked
off another year where, like,the crumbling of a lot of deeper
, meaningful friendships came toan end again.
I've had mental health crises myentire life, but this was the
(05:44):
crises to end them all.
Like this was the biggest one.
Oh, and on top of this, likethis is not just personal, this
is pragmatic.
Like I had to close my businessthat was doing well.
I lost all of my income or eventhe support from the government
.
Everything went to collections.
(06:04):
I had unsurmountable debt.
I could not pay my rent.
I could not find a job.
The job that I eventually didfind was not enough, as per
usual, but then in my job, Icould barely function.
If there was like three peoplein the store, the level of
anxiety I had was so abundantand it wasn't just something
(06:28):
that I could hold inside, likepeople who were buying their art
supplies or whatever would likenotice and be like, are you
okay?
And it's like something isleaking out of me.
How can I not do these simpletasks anymore?
And so I really was trying tohold myself together while
(06:49):
literally everything, everysingle structure in my life, was
collapsing.
Yeah, it was around two years tothis day that I, for the first
time in my life, I said Zoe,something is wrong.
And I want to caveat I don'tthink autism is wrong.
I don't imply anything with mywords, but like I knew something
(07:13):
was going on and by 38, thisshould, no, this is unmanageable
.
And suicidal ideation is avery, it's a reality for me.
It's always been throughout mylife and like it was just coming
back.
But then it was starting to getvery real and very scary,
(07:37):
especially after I lost all ofmy money and I eventually got an
eviction notice.
Like it got fucking scary.
I had relied on my parents myentire 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 isgoing on and I just had it.
(07:59):
It was like, then I'll lose myhousing because I don't know
what's going on with me.
It was really at the point whenI gave up within the spring of
2022.
And I thought you know what?
This is my life and it's neverbeen different.
It is the worst right now, butthis has just been a cycle and I
(08:20):
just have to accept that thisis what life is, like not being
able to eat because I can't buygroceries, not being able to
find proper pay or, if I do finda job, having these weird
interpersonal issues come upthat end up getting me fired or
having a rancorous separationfrom a company.
(08:43):
Over and over and over and overagain.
And it's like this is just whatlife is.
I guess I accept this, and itwas literally when I had given
up trying to figure out what wasgoing on with me that like a
series of events coalesced forme and then it came into focus
(09:07):
like, like I did not pursue adiagnosis to get diagnosed.
I pursued a diagnosis initiallyto rule it out because it was
the big one.
Like out of all the things, andI've had so many connections
with people who are bipolar ordeal with depression and anxiety
(09:30):
and I was always within thecircles of these people and I
understood them on a particularlevel.
But I also knew that there's alot of stuff about certain
issues that I resonated with upto a point, up to a point, up to
a point.
And then when I started toseriously consider if autism was
(09:51):
the thing with me, I kept mydistance from it because I was
like, I will always reserve amargin for me being wrong or for
me not being able to see thefull picture.
And I kept waiting for thattime where I would hit the wall
and it would be oh, that doesn'treally fit, I see this, but I
(10:15):
don't see that.
But like the inverse happened,where it was like it just kept
getting deeper and I was likethis is it! I relate to that,
this makes sense, that makessense, holy fuck.
And then, once I started toaccumulate this idea that this
(10:35):
could be a reality, then like mymind went fuzzy and it's like
no, this can't be it.
There's no fucking way.
I have so much rage, not atanyone particularly, but it's
just like, it has such a surrealfeeling to live with an
(10:59):
invisible disability that otherpeople still saw.
I did not live a life wherepeople are like glazing me over
or like, everybody fuckingnoticed! Everybody! And whether
they want to accept that now orrationalize something away,
(11:20):
everybody in my life who I'veever had contact with has seen
it.
And it's just like, I can'tbelieve this happened because I
was listening to your podcastwhen I eventually got a job in a
warehouse.
It was not good, it was theworst.
It was the fucking worst.
(11:41):
On top of everything, I alsohave a learning disability with
math, and so the warehouse, thepremise of the job was basic
math, and I was like I ambetween a rock and a hard place.
My landlord extended, likeafter they gave the eviction
notice, I finally emailed themand then, what the classic thing
(12:03):
that everybody says, why didn'tyou communicate with me?
Why didn't you say this?
Why?
You can't, you can't notcommunicate.
And it was so difficult for meto like tell anyone anything
because I didn't know how to.
And so eventually she gave mesome space and we worked out a
(12:24):
payment plan, once I did get ajob, to try to get out of the
hole that I was in.
And I was in the warehouse and Ilistened to enough podcasts and
I had enough inquiry that I waslike, this is life or death for
(12:44):
me.
This is not because I'mcurious, if I can find a reason
that I can live again or have asecond chance at life, like I
need help and I need to findsomeone who can help me because
nobody ever helped me and that'sthe reality for me.
(13:08):
That's what this was like.
And then it was a long process.
It was like a year process thatthings fell into place which
was not comfortable, financiallywise.
T here's just so many detailsand moving parts that I cannot
(13:31):
possibly put together on a map.
But it was, basically, it wasn'treally a choice for me.
It was imperative because, pastthe point of reading books or
seeing things on the internet,it was like I can't, I can't
just sit with this, I needsomeone to rule it out.
(13:52):
And then I found someone andagain it like went the other
direction.
I was given, with a therapist,I had to change therapists
because the one who I brought itup 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 layerbecause then I left my therapist
(14:16):
I had been with for sevenyears, but I was getting worse
all the time, and so like, theamount of stuff that has
happened within a year and ahalf of my life has turned
absolutely upside down andinside out.
Kristen Hovet (14:30):
I'm just taking notes, too, as you speak, and
one thing you mentioned wasearlier on in your life, like
growing up, so that's a part ofit, and all the times that
someone could have seen it andthey didn't or if they did, they
didn't say anything.
So I feel like that's a failure, a systemic failure, and that
(14:51):
you were failed over and overand over again and that's such a
common story.
I definitely experienced thatand so many other people that
I've spoken with haveexperienced that.
Were there any key things, kindof experiences growing up, or
times when you feel like itcould have been recognized, or
things that you specificallyrecall?
Zoe Alexandra Glass (15:12):
There's a lot of significant, obvious
things, but it's so difficultbecause, like, the first thing
you want to do is be able toplace blame.
In any kind of situation, youwant some kind of accountability
pinpoint.
I think one of the most complexthings that I'm grieving now is
(15:32):
that there's not just one thingthat I can point to, and my
therapist has helped me a lotwith this because it was going
to be very difficult for someonelike myself to be recognized
back in, I was born in 84.
So like mid 80s to maybe myhigh school years, like 2000s, I
(15:54):
was taken to a psychiatristwhen 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 theautism was not like it was
still, it was kind of likealmost forget it unless I was
expressing my meltdowns and nothiding them.
(16:17):
I feel that if I had, and thisgoes into blaming myself
territory, because I wasconsistently having meltdowns,
but I was very good at hidingthem or not really showing the
extent of my daily anxiety.
And if I had just screamed more, if I had just thrown the
(16:39):
things that I wanted to throw, Idid throw things sometimes and,
you know, that got me introuble real quick at school.
So like for me it wasn't goingto be possible, especially when
I saw a psychiatrist who, like Iunderstand that autism may have
been not on the radar back inlike 1999.
(17:00):
But like he didn't even pick upOCD.
That's incredible.
I've had OCD since around eightyears old.
The fact that I spent an hourwith this person for an intake
and they couldn't even clock OCDand instead they told my
parents that I was delusional.
And so, I have both sides oflike, I've fought for this place
(17:26):
in my life for so long and Ireally empathize with people who
cannot find doctors who willlisten to them because I've had
that experience.
Or even doctors who do adultassessments and then can't take
you, and I understand thevitriol that people have towards
that system.
But also I have experienced theother side as well and I want
(17:51):
to tell people, good doctors doexist and thorough practitioners
and clinicians with goodassessments do exist, but it
might take a lifetime to findthem.
And I think I got off theoriginal question.
Oh, about people seeing me.
It's just so, it's so intense.
(18:13):
I have pictures of like, Iwould line up all my, you know,
I'd organize my toys in thecertain way, or I would,
one thing I did was likerepetitive audio play.
I had a little player piano andit was a running joke in my
house for forever because therewas one song on the little
player piano I would just playover and over and over again.
(18:36):
My dad was like, it drove menuts, you just kept pressing the
button and the song would playforever and ever.
And so like, significantrepetitive behaviors throughout
my life, which are both like,with autism, OCD, the
repetitiveness is different, itcomes from a different well.
Like, they're very distinct forme.
(18:59):
My obsessive interests, myrestricted interests, people
noticed, people noticed, andlike, that's just Zoe.
They went into uncomfortableterritory.
My restricted interests werenot limited to objects or music,
it was also people.
And so that's another layer oflike feeling a lot of confusion
(19:20):
or being told that like, you'rebeing 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, youknow, to an outside person.
An interesting thing is like, ingrade school, in retrospect I
think I had a crush on a boy butI didn't know how to talk to
(19:44):
him or to play with him or bearound him more.
And his mother drove a Volvocar, like the old sort of old
school 80s Volvos have aspecific like boxy look.
They have a very specific lookand I think, because I liked him
and his mom had a Volvo, Ipicked Volvo as this car that I
(20:07):
was intensely interested in andthen I started counting them on
the highway.
I would look for Volvoseverywhere I went.
So like my like crush for, likea human person, the way that I
was able to express thataffection was through care for
(20:27):
an object and to keep track ofall these cars.
I'd be in the car counting one,two, three, and my parents were
just like, oh, she's countingher Volvos.
Just to touch on my parents,they have expressed a lot of
guilt regarding this.
(20:48):
I don't think they've reallyprocessed anything about this
yet because it's made incredibleripples, ripple effects
throughout the family dynamic.
My mom mentioned a couple ofChristmases ago that she used to
cut the tags out of my clothesbecause I asked her to.
(21:08):
And I was like, you never toldme this.
She's like, well, it wasn't abig deal.
I was like, this is a big deal.
Then she mentioned, well, youjust don't understand how much
we accommodated you.
I was like, do you hear whatyou're saying?
My mind is exploding right now.
(21:30):
What are you talking about?
I don't have these memories.
I've locked them away in aniron box.
I didn't start remembering mychildhood until I started going
to therapy with an ASD clinician.
That's like another level thatI am currently dealing with.
All these intrusive memoriesthat I have never processed are
coming back now full force.
(21:51):
It's too much.
But even with the Volvo thing,my parents never made me feel
weird for it, to the extent thatmy dad found a Volvo graveyard
a half hour outside of our town.
For one day, he's like, I wantto take you somewhere.
It was just a Volvo mechanicwith a sprawling yard with all
(22:15):
the Volvos that were in repair.
There were hundreds of them andI freaked out! I couldn't
believe it! My parents, it'ssuch a complex thing to process
because they saw a lot ofthings, but they didn't know
what it was or they didn't makeit like it was too weird.
They tried to find, they triedto give me the Volvo lot so I
(22:41):
could embrace this fascinationwith this car.
And, by the way, I didn't havethe self-awareness about the
connection to the crush and thecar.
This came out from my therapyand from considering how I
project, my emotions are morecomfortable around objects or
gift giving, or without verbalexchange or touch or anything
(23:04):
like that.
Kristen Hovet (23:07):
Are you comfortable sharing what your
diagnosis is specifically?
I know you shared with me thatit's level two.
Zoe Alexandra Glass (23:14):
I want to technically say that I was not
provided a number level in myreport.
I have autism spectrum disorderwithout accompanying language
or intellectual impairment.
I have persistent depressivedisorder.
I have obsessive compulsivedisorder, generalized anxiety
(23:35):
disorder, and the specifiedlearning disability in
mathematics.
And that's a lot.
Where is my camera?
That's five! But within myreport, which was about 30 pages
I think, the language withinthe report aligns with a
(24:00):
diagnostic of more level twosupports, not only with their
recommendations, which were solengthy, I couldn't process how
much accommodation they gave me— accommodations for the
workspace, they gave meaccommodations should I go back
to school, and then they gave mepersonal recommendations which
(24:22):
I thought, reading them, I waslike, this is excessive.
Holy crap, have I needed thisall this time?
And then there was language inmy report that has, on the
different tests that I did, theADOS I was average, but with the
CARS-2-HF I scored moderate.
(24:42):
And then with the SRS-2, whichmy therapist gave me prior to,
he was screening me for thereferral to the assessment, and
also the SRS-2 that was given tome in my assessment, both had a
score of severe.
And there is so much morelanguage in this report that
(25:04):
points to a moderate, forargument's sake,
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 peopleonline, I don't relate to a lot
of the experiences that I see alot of YouTubers expressing or
(25:26):
people on Reddit.
The forums that I find the mostpragmatic for myself are the
ones that are geared to moremoderate support needs people,
people who have a lot ofpragmatic issues like myself,
which is why I'm in occupationaltherapy.
People like myself that, like,the whole relationship thing or
(25:50):
partnership or marriage oranything like that.
It really bothers me when I seea lot of popular discussions
saying how not having a marriageor anything like that is a
stereotype of autism, and it'slike you need to step back
before you start, not you, butbefore people start making
(26:12):
sweeping generalizations aboutthe autistic community as a
whole just because you werenever seen.
And I say that for myself aswell as for everyone else.
Everybody wants to be seen andeverybody deserves to have their
pain recognized, but not at theexpense of being laterally
(26:32):
ableist or denying the fact thata lot of these stereotypes are
people, moderate and highsupport needs individuals exist
and the community existed waybefore I ever entered into it.
Even though I know I havedifferent support needs or
(26:54):
perspectives, or difficulty evenunderstanding why someone would
want to have a relationship,because for me it's just a waste
of time.
And I say that, like, I haveall my interests that I like, I
only have so much energy.
I have tried but I just didn'tget it.
I don't get it and that's OK.
(27:17):
And I'm not a stereotypebecause having a marriage is of
no interest to me.
I'm just in the spectrum withall of you.
I just like that's justsomething that really wears on
me because I understand howpeople really want to be seen,
but it can't be at the expenseof pretending that all aspects
(27:42):
of people in the autism spectrumdon't exist.
Just because you experiencedsomething doesn't mean that
other people are not out thereexperiencing something different
.
Kristen Hovet (27:53):
You mentioned occupational therapy, so in what
ways has that helped you?
Zoe Alexandra Glass (28:00):
It's helping me understand how my
executive and adaptivefunctioning affect my daily life
because for decades I was notable to brush my teeth or
maintain dental hygiene, whichled to a lot of dental rot and a
lot of issues with my teeth.
Really, it's trying to developsystems for myself so that I can
(28:25):
take care of my basic needs,brushing my teeth, maintaining
dental hygiene.
I struggled a lot with flossingbecause of sensory issues which
I never correlated, but then Ihad more information.
I was like, oh, I see how thishappened.
It was tough to tell myoccupational therapist.
(28:45):
I was like, it's not about, oh,it's a drag on time.
Like putting the floss betweenmy teeth is one of the most
disgusting feelings and I can'tdo it.
I used to have a boyfriendback, I can't remember what year
it was, a long, long time ago,and he was like, how do you not
(29:05):
floss?
It's just like you do this, youdo this, and I was like, don't
put that thing near me, like Ican't do it, and he was like
jokingly with me.
But now I think back and it hasa completely different lens
over it.
Occupational therapy is alsohelping me, I struggle with
eating properly or hydrating,really trying to have visual
(29:27):
cues for these momentsthroughout my day.
That is eventually going togive me energy and battery to be
able to show up for the parttime work that I do have and
have my brain, on a verybiological level, function, with
enough steam and energy.
(29:48):
Dealing with my sleepingpatterns, also trying to like,
there were times in occupationaltherapy where I was still
incredibly distressed and I waslike engaging in self injurious
behavior and I didn't notice itand my occupational therapist
was like, you are doing X rightnow.
Do you know that that'shappening?
(30:09):
And it was like, no, I don'tknow all these things and I
still don't feel like I'm reallycommunicating what occupational
therapy is doing for me.
But I was always asking for OTwhen I was in therapy, like when
I was with my past therapist.
He was trying to get me tomeditate, go meta and seek
(30:33):
within yourself, and I was like,I can't brush my teeth.
Can you tell me how to brush myteeth?
I can't hold a job.
How is meditation going to helpme not be houseless?
And I was asking for these verypragmatic things that
(30:54):
occupational therapy is nowaddressing.
But I didn't know whatoccupational therapy was for
autism and also to that extentmany autistic people have very
differing experiences in OT.
This is just mine.
They can work also with motorskills and stuff like that.
But mine is more specificallytargeted to my executive and
(31:18):
adaptive functioning so that Ican build a scaffold that
hopefully in the future I canwork full time and not burn out,
because I did burn out when Iwas at the warehouse and I had
to take a medical leave.
Like it's on record record, Iwas away for two weeks, signed
off by my psychologist, becauseI was burned out.
(31:39):
So it's also working to changemy relationship to food, which
is like another section.
Like I've had disordered eatingmy whole life.
I've had really restrictiveeating habits.
Also, cognitively, I don't gethungry, so, like the first thing
we worked on, he's like how'syour breakfast?
I don't have breakfast becauseif I get up at eight then I'm
(32:02):
not hungry till 10.
But once it hits 10, breakfastis over and he was like, what do
you mean?
I was like, it's past breakfasttime, so I can't eat until 12,
which is lunch.
And he was like, do you eataccording to cognitive prompts?
And I was like, yeah, I don'tknow how, like, what else is
there?
Then if I miss lunch and lunchis from 12 to 1:30 ish, but if I
(32:28):
go like quarter to two, I can'thave lunch and he was like,
okay, well.
And that's like the rigidity,the rigid thinking, which is
impacting me in a very realbodily way, and he also helps me
, he's trying to like massagethis out so that I can practice
(32:49):
flexibility, but also not getdistressed when I change my
rigid thinking towards eating.
It's a very long process.
It's been up and down, but it'smade a lot of inroads in my
daily quality of life so far.
Kristen Hovet (33:09):
That's great.
I have so many things to say.
One of them is, I didn't knowwhat occupational therapy was
for the longest time and it cameafter my diagnosis and then
when I did find out about it, Ithought it was a thing that kids
get.
And when I was diagnosed myself, occupational therapy never
came up, because I'm quoteunquote what they used to call
high functioning, level one.
(33:30):
But things for me that I wish Ihad learned were things like
finances and I also have alearning 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.
The other thing that came tomind, and this is for
(33:52):
professionals listening, likewhen someone comes to you and
they have disordered eating inany way, shape, or form and
they're not diagnosed autisticyet, please get them an
assessment because the overlapis 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 manyyears for that ever to be on the
(34:13):
radar for people, like theautism thing.
Zoe Alexandra Glass (34:16):
I want to mention, about the eating,
because another connection Imade, so I had issues with my
weight when I was pretty young.
It happened around 10.
Like I mean, I gained a lot ofweight in a very short amount of
time.
I think it was a sensory issuething, now that I reflect back.
(34:36):
When I was a young teenager, Idecided that I wanted to lose
some weight and I tried WeightWatchers and it was unbelievably
successful for me.
I lost 55 pounds over a courseof time, I think it was like a
year.
It just worked for me.
Like it worked.
(34:57):
It wasn't until I revisited thatera of my life, knowing what I
know now about myself, and I waslike, this worked because it
was all about systems andstructures and routine and
predictability.
Back then they had like, I don'tknow what they do now, but it
was all about points andordering, like structuring your
(35:19):
food and knowing when was goingto happen, how, and how many
points.
Everything was just designedfor me and I didn't have to
think about it because it wasalready systemized for me and it
was just so easy because thatis naturally how my brain
(35:40):
understands information.
And at the same time it wasvery restrictive in a way.
So like there's lots of elementsthat play for me back then that
were really, really beneficialto what my personal goals were,
but in a way that was invisibleto me, like, I didn't know why
it was working or how I didn'thave trouble using their
(36:04):
strategies.
But now, as I reflect back onhow things in my life are more
comfortable and easy wheneverything is set out and
everything is regimented andpredictable, and this means that
and that means this, and ifthis just happens the way I know
that it's going to happen, thisis going to be the result.
And so that level of controlover, like, the relationship I
(36:29):
had with food really helped me.
There were other things, therewere like dark sides to it as
well, but just for that,realizing how I structured my
food, I was like, no wonder thatworked for me because that is
what I'm seeking out of life allthe time, that rigidity.
It was just so easy to slipinto it because, with my own
(36:52):
disordered eating, it was just amess and that gave me some kind
of construct to work within andthen it was a little bit
healing for me and within myrelationship with food, which is
still a struggle.
Kristen Hovet (37:09):
I guess to switch gears before we run out of
time, I wanted to talk aboutyour martial arts, so that was
one of the things you firstmentioned when you reached out
to me.
So I know you practice, I'mgoing to say it wrong, Brazilian
Jiu Jitsu.
Zoe Alexandra Glass (37:23):
No, yeah, that's it.
Kristen Hovet (37:25):
That's it, okay! Or you said BJJ for short.
Can you share more about howyou got into your martial arts
and also how this practice hashelped you in the context of
being autistic?
Zoe Alexandra Glass (37:37):
So I started Jiu Jitsu far before,
seven years, seven years beforeany of this cropped up for me.
I liked it because it'sbasically your problem solving
in real time with other people'sbodies, trying to flip them,
trying to pass their legs,trying to get to their back.
Beyond it being playful and areally intense way to work out,
(38:03):
it's so intense, like it's just,it's nothing, there's nothing
else like it.
Like there's no jog I could goon, there's no elliptical I
could train on that is like,will replace the feeling and the
adrenaline and the rush of whatJiu Jitsu is.
But also, because it's such areal time chess game, it's the
(38:27):
only time in my life where mymind is quiet and everything
melts to the background and it'sreally the only time where I'm
regulated and where I feel peaceand where nothing's wrong.
I can just exist in the moment.
(38:49):
It honestly, it's like themeditation that everybody tried
to get me to do, but it's likeincredibly regulating for my
brain.
It does train with my executivefunctioning because, first of
all, I have a lot of socialanxiety.
I did not get the diagnosis ofsocial anxiety, even though I
fit the criteria, because mydoctor said ASD explains it.
(39:13):
But I still have tremendousanxiety when I go into the gym
on the mat, being around in aroom of crowded people, but then
when I get into it, it's theonly time that I've really been
able to achieve truly living inthe moment and having that peace
of mind that I've chased mywhole life.
(39:36):
I've looked everywhere and it'sthe only place that I can find
that reserve of quiet withinmyself, because there's just so
much going on.
And unfortunately, the onlyother time that my mind goes off
is when I had previouslyengaged in self harm, so like,
(40:01):
in terms of how to regulatemyself, choosing Jiu Jitsu out
of something that would beeither dangerous or deleterious
to myself.
Finding Jiu Jitsu, moving mybody is obviously a much better
coping mechanism for my ownpersonal distress, and when I'm
(40:24):
not distressed, then it reallybecomes the place where I'm able
to connect with other people.
I talk with them.
We can talk about Jiu Jitsu, orwe develop deeper friendships
and then, like, the more sillytimes can come out and we make
our own inside jokes or we justhave fun.
It's the most low pressuresocializing.
(40:46):
It's just an easy in because,no matter what gym I walk into,
I have a conversation because Ican say, how's your training
going?
Without being in a room andbeing like, I really don't even
care to talk with other peopleor to make advances or socialize
, and Jiu Jitsu has really beenthe place where it's helped me
(41:08):
open up the best that I can andmake friendships, even if they
don't last.
The friendships I have madewithin 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 socializewithout so much fear, it just
(41:30):
takes a lot of pressure off.
Kristen Hovet (41:33):
You mentioned meditation and it's interesting
because I remember doing anepisode on burnout because I was
recently going through that andsomeone recommended, someone
autistic recommended meditation.
But whenever I've triedtraditional sitting meditation
it's almost made it worse, likeI feel like it can almost, it
can trigger or make a burnoutexperience even worse because
(41:56):
I'm almost like focused on itand my own thoughts and
sensations or something.
And, similarly to you, youdescribed how the only time
you're truly, like your mindgoes quiet, is when you're
practicing martial arts, and forme it's high intensity interval
training, like the same thinghappens for me.
I have to be like pounding,like on a yoga mat or something
(42:18):
and just like, or liftingweights really heavy, or
something like that, for me toactually feel meditative.
Zoe Alexandra Glass (42:28):
Honestly, Jiu Jitsu is H-I-I-T, the HIIT.
It's like up and down, up anddown or like moving, moving,
moving, moving, flip, moving,moving, trying to pass the legs,
like there's, and it's in shortbursts and it's like, it's
exhausting but it's so rewarding.
Kristen Hovet (42:43):
That is meditation, but it has to be
like a body meditation, I guess.
And I don't know, I haven'tseen, because I'm always looking
at research, I haven't seenanything on that for autistic
people.
And now I'm curious because itfeels like there's, there are
some autistic people who, like,can sit still and have that
traditional meditation, but forso many of us, it backfires.
It's actually, you used theword deleterious, which is
(43:05):
exactly it, like it's worse forus.
The other thing I wanted tomake sure I covered is, like,
cause I know you reached out tome shortly after you were
diagnosed and then I've onlybeen 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 (43:23):
It was almost a year.
I think I reached out in Aprilor May.
Kristen Hovet (43:26):
Yeah.
Zoe Alexandra Glass (43:27):
Four weeks after my diagnosis.
Kristen Hovet (43:29):
I know you had mentioned the disability support
, so would you like to focus onthat?
Zoe Alexandra Glass (43:33):
I have to say that this is in Canada, this
is what is available forCanadians, and I didn't know
about the disability tax creditor the registered disability
savings plan.
My assessor, when they gave myreport, they also sent me two
things.
They sent me a federal form andthey sent me a provincial form
(43:55):
to apply for a person withdisabilities for the ministry of
poverty reduction and thedisability tax credit
information, which is a federalprogram that helps people with
visible or invisibledisabilities reduce the amount
of tax they pay because it'sdifficult to work or maintain
(44:19):
work, have gainful employment.
Doesn't matter, like this isfor people with diabetes, this
is for people with BPD, this isfor people with autism, ADHD,
cerebral palsy, like across theboard.
Your doctor has to fill it outfor you, very specifically and
(44:39):
very well because basically itgets sent to the government, the
DTC, and it talks about howyour disability impacts you in
daily living.
So as long as it's filled outaccurately by your doctor and
you fill out a little section ofyourself, they sort of process
(45:00):
it and what's possible is thatyou can pay reduced taxes going
forward.
But also a big thing is thatthey retroactively look at your
work and, if it's applicable,they will reimburse the tax that
you improperly paid.
So what happened with me is thatI had struggled to work and
(45:23):
maintain jobs since 2013.
And the way that my doctorfilled out the form for me was
really tough to read because itwas so incredibly validating of
everything I've experienced butnever acknowledged.
But it was all in the paper,and so I waited for months, I
think it was four months Iwaited to see what the
(45:44):
government was going to say, andthe government cleared me and
accepted me for the program.
And they gave me the fullretroactive amount, which the
excess that you can get is up to10 years, and so I got the tax
refund for up to 10 years, whichamounted to over $10,000 for me
(46:04):
.
$10,000 is a life changingamount 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 haveshoes.
I couldn't pay for groceries, Icouldn't.
So, like, all my basic needsstarted to be met.
The impact of getting thatmoney that I had already worked
(46:25):
for coming through, it was like,there was no other feeling in
the world than like havingmonetary safety for the first
time in my life.
And then,so I have that, but it also goes
forward.
I don't have to reapply until2028.
And then I pay reduced taxesbecause I work in Jiu Jitsu, I'm
(46:48):
an instructor.
That's pretty much what I cando.
And then for the person withdisabilities, with the
provincial government, this isonly in BC, depending on your
income, you may be eligible forthe poverty reduction social
program, which I am, and thatgives me a percentage of money
(47:11):
to help offset my rent costs,based on my income, through my
teaching.
I am also registered as aperson with disabilities, so I
get certain, I get help withlike medications or like dental
aspects, to pay for that.
Yeah, I just want to say, if youthink there's no resources
within Canada or within yourspecific province, it's just
(47:35):
because someone hasn't told youabout it.
On top of the DTC, once you getaccepted for that, you can open
a registered disability savingsplan which is, if you put in
$1,000, the government willmatch you times three, and this
can go on up until you're, like,50 years old.
(47:57):
They can also give you grantsand bonds from your status and
then you can start to havesavings for when you're, you
know, 50 years old.
Maybe your parents have passedalready, or whatever your
situation is.
Most people who are disabled orwho struggle to regulate an
(48:18):
income or have any assets, wedon't have savings.
It's day to day, it's week toweek.
I never imagined in my life Iwould ever be able to have a
savings plan.
That was not in the cards, thatwas not the way my life was, and
so, now that I have this, I'mnot filled with this abject fear
that, like, when I'm 50, Icould be houseless, just like I
(48:42):
narrowly escaped losing myshelter back in 2023 or 2022.
I can't remember, it's a blur.
And so, like, some of thesevery real things, I've now been
able to believe that I'm goingto be able, one day, to get out
of this survival and hopefully,like live, and be able to enjoy
(49:05):
life and not constantly be infear.
And I don't even want to berich, I don't care about rich.
I want to be able to have foodand shelter and gain a quality
of life back that I've struggledmy entire life to stabilize,
(49:25):
because it's never been there.
There's always been a threat ofthis, that, and the other thing
for my pragmatic issues to justcollapse.
These programs are out therefor Canadians, so I really
wanted to tell people about this.
Or ask your doctor, and if theydon't know, ask another doctor.
Like, keep plowing through toget what you are absolutely
(49:50):
entitled to be supported by.
Kristen Hovet (49:53):
And I think there's an expectation that
we'll go and like talk to adoctor about it or something
like that.
But for me, I didn't have oneor she had retired, so I was
just like, I'm not going to goto a random clinic and talk to a
stranger about it.
Zoe Alexandra Glass (50:09):
Al so, I wanted to tell you that, like,
whether you're, were youdiagnosed level one?
Kristen Hovet (50:12):
Level one specifically.
Zoe Alexandra Glass (50:14):
Level one specifically.
You can still benefit from OT.
Kristen Hovet (50:18):
Really?
Zoe Alexandra Glass (50:19):
Absolutely, and that's also, like, part of
a big issue is that people seelevel one and say, oh, it's not
that bad, as like, don't get mestarted on that line.
Kristen Hovet (50:28):
Yeah.
Zoe Alexandra Glass (50:29):
Because you need support, like it doesn't
say level one, no support.
Yeah, everybody is going tolook different.
I may have different challengesto you and vice versa, but you
absolutely can benefit fromoccupational therapy.
Anyone who thinks they may notqualify, it's not really about
qualifying.
It's about improving yourquality of life and the things
(50:50):
that you're personallystruggling with, and a good
occupational therapist is goingto take you seriously and is
going to try to help you withwhatever you're dealing with.
Kristen Hovet (50:59):
Yeah, I think a lot of us late diagnosed level
one, we kind of have this likeimpostor syndrome that comes up
and then also we feel guiltyabout quote unquote, like,
taking services from others.
Speaking firsthand, that's kindof like my thought process.
At the same time, if I didn'thave a job where I could work at
home, I don't think I couldhave a full time job, like it
(51:22):
wouldn't be possible.
Zoe Alexandra Glass (51:23):
The environment, it's everything.
Environment is everything aboutbeing able to continue,
especially in terms of work.
And, yeah, that's anotherthing, you mentioned impostor
syndrome.
So, I never experienced that,that's not something that came
along with my experience ofbeing late diagnosed.
It was more like, yeah.
(51:45):
The whole levels of support areso, they're very helpful, but
they're also very vast becauseeven within what would be
considered L2 or moderate,there's even a spectrum within
the spectrum.
Some people can't live on theirown, or some people can work a
little bit more than I can perse, or some people may not be so
(52:10):
willing to talk.
There's so much, even withinall of the support levels.
I just really wish that,overall, we could support each
other because I just see so muchcrappy stuff online.
And I just wanted to say that,like, I will always, I don't
ever consider myself an advocate.
(52:30):
That is a section within mydisability I don't think that I
can manage.
But I have made it a point totake the time to listen to and
consider that parents, families,caregivers are part of the
autistic community and peoplewho are moderate or high support
(52:51):
needs or who use AAC, they areas much a part of the community
as the people who can comeonline and make videos or be on
podcasts and I will always do mybest to support them.
Yeah, the caregivers are part ofthe community and I see a lot
of weird stuff online sayingthat they shouldn't say anything
(53:13):
because they don't know whatit's like.
But you got to take a step backand realize that this whole
thing, it's bigger than me.
And the only way that I'm goingto understand my autism is if I
know the history of autism, ifI listen to other people who
have vastly differentexperiences of me within autism,
(53:35):
and if I continue to listen andread more than project my own
personal beliefs, which are noteven fully formed.
I could be so wrong on so manycounts and, like, I just want
and I hope for the autisticcommunity at large to realize a
(53:56):
little bit more that moderateand high support needs, still,
they're not stereotypes.
Kristen Hovet (54:03):
Before I let you go, I know we're going over, but
is there anything that Ihaven't asked you about or that
we haven't talked about that youwanted to make sure you discuss
?
Zoe Alexandra Glass (54:11):
I guess I would like to take the time,
because I mentioned at thebeginning that I was working in
a warehouse when I listened tosome of your podcasts
[episodes], and it's incrediblysurreal to be, like, here on it
and then thinking that someoneelse might be in a warehouse
(54:31):
listening to this podcast.
I wanted to say to them that,if you are thinking that
something's going on, that Iknow the feeling of what it
feels like to be trapped with noway out.
And it's so terrifying to thinkthat you may never get answers
(54:55):
because of so many incrediblebarriers that are already
against finding a doctor whowill listen, finding a doctor
period, finding a doctor who'sinformed, finding an assessor,
and an assessor who does adults.
Like, it seems like everythingis absolutely stacked against
(55:16):
you and I went through thatmyself.
I just cannot believe I'm onthe other side of that.
And if you are thinking aboutthe potential that you may have
autism or be autistic, I wouldjust say to realize that what
you're taking on is veryserious, and that level of
(55:37):
seriousness may not hit youuntil later.
And I am all for responsibleself diagnosis.
I don't think everybody can orhas to get an official
assessment.
It might not even betechnically possible, but just
have patience.
Really deeply think and beprepared for things to come up
(56:03):
that you can't prepare for.
There's going to be a lot ofthings underneath the life that
you've lived, year after year,that going and cross referencing
your life over the DSM-5, asyou prepare to see someone, it's
going to bring up a lot ofstuff.
It's going to bring up a lot,and just be aware that what
(56:26):
you're venturing into issomething you've never
experienced before.
And it's OK if you feel thatnothing's ever going to change.
But I'm living proof that it'spossible and I truly never
thought that anything would everchange again in my life.
(56:46):
I know that I talked aboutsuicidal ideation before.
I think when it comes down toit, I really want to end on a
note of hope, because I'm stillautistic.
I'm still struggling immensely.
I just got through a period ofhaving a dissociative episode
because I was so overwhelmedwith a lot of things that were
(57:07):
going on and I was having a lotof trouble in therapy, and it's
dredging up unbelievable painfrom my past that I've never
examined.
But at the same time, like, Ihave hope that, in time, I'm
going to be able to regulatemyself better and to have a
better quality of life.
So I would just say, don't giveup and pursue your answers as
(57:33):
far as it takes you, and I justwant to say I know what it feels
like deeply.
It's one of the worst feelingsthat I think a human can ever
experience, but there is alwaysa chance that something can
change in unbelievable ways.
Kristen Hovet (57:51):
I wasn't expecting the conversation with
Zoe to be as emotional as it was.
I found myself after ourconversation just feeling, I
guess, hopeful, as Zoe had endedon a hopeful, positive note.
But I also felt the heavinessof her story and also knowing
(58:18):
just how common her story is forso many folks who are autistic
and who are diagnosed later inlife.
So I want to thank Zoe.
Huge, huge thank you, Zoe, forbeing my guest and just for
being so open and sharing someof the hardest aspects of your
journey to diagnosis and thethings that you continue to
(58:41):
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 thesame 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 youas a person.
(59:04):
I know, for myself, the bigthing was just the change in
self-concept.
I think that's a big one,especially for those with the
level one diagnosis, because weare in that sort of, some have
described it as kind of like anin-between reality, of like
having one foot in theneurotypical world and one foot
(59:26):
in this, for the majority of ourlives, feeling like we don't
quite ever fit in, even thoughwe have lots of the behaviorisms
and interests and some overlapand similarities with
neurotypicals.
But then there's this hugeother part of ourselves that
doesn't match or that doesn'tfit, and so we feel in part like
(59:48):
aliens our entire lives.
And so, when we get thatdiagnosis, it's just like oh, it
explains so, so much.
And instead of beatingourselves up all the time, we
can kind of go, oh, actuallythere's a reason why I was like
that, there's a reason why Ifelt different, there's a reason
why people always had thesespecific responses to me, and we
(01:00:12):
can look back and kind of likere, almost like rewrite how we
felt about ourselves in certaincontexts.
And for me that was a huge,huge thing.
You'll also notice that I have anew neon sign behind me for The
Other Autism, and I live in aplace where I can't quite get
(01:00:34):
far enough away so that youdon't see the lights.
You can see the reflections ofmy lights and I just can't angle
them a certain way in mycurrent 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 likeset up my space the right way t
(01:00:55):
hat I'm hoping it will one daylook like, but I hope you like
it.
I ordered it from a person whomakes neon signs and they're
based in Pakistan.
So The Other Autism, coming atyou 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
(01:01:18):
today.
Thank you so much for beinghere.
Until next time, bye.
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