EP37: Former Teacher Finds the Diagnosis Her Therapists Missed

Today, I'm speaking with Sarah, a musician, gardener, and former teacher based in Pennsylvania. Sarah spent much of her life in therapy and struggling with others' misunderstandings and insensitivities. Now, in her 60s and with a handful of mental health diagnoses behind her, she is finding that autism might explain so many of her experiences.

A series of back-to-back crises set the stage as Sarah wrestles with her newfound autistic identity.

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• 14:24 (Cont.) EP37: Former Teacher Finds the Diagnosis Her Therapists Missed

Transcript

Kristen Hovet
Today I'm speaking with Sarah, a gardener, musician, and former teacher in Pennsylvania. But before I share our conversation, I'd like to thank Roberta for buying me a coffee through the buy me a coffee link. Roberta, I really appreciate it. I'd also like to thank the Patreon patrons who sponsor the show and in return get some bonus content. There's also a link in the show notes to Patreon. For a few dollars a month or any custom level that you set,

you can become a patron of the show. Speaking of a few dollars a month, I have a correction to make from the last episode. When I was promoting The Other Autism's Patreon, I said for a few dollars a day, you can support the show. Obviously I meant for a few dollars a month, maybe some wishful thinking on my part. And with that, please say hello to my guest for today, Sarah. 

Sarah 
I'm a musician, a gardener and a former elementary school teacher.

Was born in Maryland and lived there as a child, but have lived in Southeastern Pennsylvania since I came here to attend college. I'm happily married to a fellow musician. We married in 1983. We had some ups and downs over the years, but as my husband says, our separations were utter failures. We're just an hour or so west of Philly and right near the Delaware border. And we built the house in 94 and we've been living here ever since.

I will be turning 68 years old at the end of this month, which totally blows my mind, but there you have it.

Kristen Hovet
I'd love to hear more about how you arrived at autism. I know we've been emailing a bit. So what signs or experiences made you realize that you might be autistic? 

Sarah
The main thing I think, and I've heard a lot of other people say this, that I was just always aware that I was not the same. I always was kind of looking through this invisible wall where the other people were just behaving like people. And I always sort of was just like, I wonder how they do it. I wonder how they figure it out how to, you know, cause I just always felt that I was not sure how to be. When I was a school teacher, of course, I learned about various subjects to do with

differences. And when I started teaching back in the 80s, special ed and regular ed were separate. I remember hearing about Asperger's. Some kind of light bulb went off and at first I was like, my God, my father is, I think my father's Asperger's and my father -in -law who are both really intelligent men, but socially different. But then I also thought, but you know what? I think

I'm Asperger's, everything they say about it sounds like me, but it was definitely boys. And so I thought, well, maybe I'm not, but wow, I sure do identify with that. I'll say that through the years, I've had a lot of emotional difficulties and I've been basically in therapy pretty much since I was in my early 20s. I think because I grew up feeling like there was something wrong with me.

Had a lot of emotional difficulties. Blamed my parents for a lot of things because they weren't the greatest parents in a lot of ways. Each time ever since I heard about Asperger's, I would say to them, you know what, this is what I think I am. I think I have this or however I worded it then. And they would say, each one would say, well, no, because you don't have this and this, this didn't happen. And they didn't come right out and say it's mostly boys by the descriptions I felt,

okay, well, I guess they would know more than me, this was my first response, you know. Through the years I became less and less willing to go, I think they know more than me. I came to a point where I thought, you know what? I know more than them. I know more about autism. A lot of the HSP characteristics, when I found this information and I was really getting into it and I found your website, thank you so much. Most of my ability to

focus on this is a thing and let me learn about it came from you. So I thank you very much. What made me think there was something wrong with me that, which then when Asperger's came into the picture, I was like, I think that may be me, just all of the typical things, I mean, social difficulties. I mean, I've been known to hide behind trees at parties because I'm not sure how to interact. My husband and I are musicians, so we play parties. If we're playing, I'm fine.

On stage, I'm fine. You know, just doing my thing, I know what to do. I have my role, I'm fine. But then after you're supposed to walk off the stage and go talk to people, I'm like, I don't know what to say. I just remember this one incident as a child. My mom had a party one time. All the neighbors were invited. And when the party started in the early afternoon, I'm downstairs in my basement room, writing poetry, listening to music, being all into what I'm doing. And at one point, maybe an hour or so after the party officially began, my mom yells down the stairs to me,

your friend Patty's here. And I go, why? And I always look back on that as just so explanatory of how I was like... like a normal person would say, oh good, my friend Patty's here! Tell her to come down or I'll come up. But my response was why, why would she be here? What is she doing here? And it's like, your mom, you're having a neighborhood party and she's invited and she's your friend, but

you know, my immediate reaction was just, why would she be here? Of course I did invite her down and it was fine. I'm very much into whatever I'm doing. I'm very much a loner kind of in a lot of ways. As I was a teacher, I had a lot of problems because I just couldn't be part of the social thing you were supposed to do. Like the teachers, I would get to work. I would go in my classroom and I would work. I would be like, had a million things to do, never had enough time.

But most of the other teachers stood in the hallway and gossiped to each other. And, you know, I'd be polite like, hey, good morning, whatever, but I would go in my room then. I was made to understand that that was not cool. That why wasn't I standing around gossiping with the other people? And my feeling was, because I'm at work and I have work to do. So to me, that was sort of another thing that was like just constantly getting these signals from people that

you're different, you're odd, there's something wrong with you. I think that sort of built up to a lot of resentment really, because I felt like, you know, like I remember one time, one of my relatives saying to me, like in the 70s, I guess I was wearing sort of hippie kind of clothes or whatever, and being told, why are you dressing like a gypsy? And I was just like, because I like my clothing.

I never would have said, why are you wearing that ugly polyester pantsuit? I would never have said that. That part of my family were very much the kind of people who, when you came in, instead of going, hello, nice to see you, they would say, look what the cat dragged in or who let you in here? Which they thought was hilarious, but I was always sensitive to that kind of stuff. You know, I loved them, they were my relatives, but they had no respect for my sensitivity to that. Like, don't treat me, I don't want to be treated that way. You treat each other that way.

So that also made me feel like some kind of weirdo outsider. Like, why don't I just like think it's cool that they're always picking on people and sensitivities, sensory sensitivities, lights, bright light, you know, the typical bright lights, loud noises. I have a real sensitivity to synthetic fabrics. It not only feels skeevy to me, it also, if I'm shopping and I have to touch everything, I can't order any clothing online because I have to touch it. It just skeeves my skin out.

And after, if I'm shopping and I'm like touching everything, my skin will actually get irritated. I have frequent dermatitis, strong scents. Like my sisters really loves Febreze. And the first time she's like, look at how great the, and she sprayed it for me. And I was like, no, no, no, no, no. I don't know how you have that in your house. Sleep problems. I've been an insomniac since I was a child. Emotional regulation. I would get an F minus on that. Easily upset.

And it's hard for me to get over it, you know, for me to let it go. 

Kristen Hovet
So would those be like meltdowns type thing? 

Sarah
Sometimes. Yeah. Sometimes it'll be meltdowns. Yeah. Other times it'll just be like sadness, irritation, you know, worry, just whatever the, the, if the mood is, is intense, I don't know how to get out of it. You know, say someone says something mean to me, you know, I'll either be angry or

I may just hold it in, I'm definitely not able to calm down from it. Executive function difficulties, I've read that that's sort of considered one of them, but time management, I'm really bad at. And when I was teaching, it was always like some kid would raise their hand and they'd be like, it's time for gym. And I'd be like, no, seriously? I was so into the social studies lesson, I had no clue. It's sort of this weird

paradox because on the one hand I get so involved in things that I'll sit at my computer, you know, for six hours at a time and not even know it. But on the other hand, many other things I jump between things, well, even at my computer actually, jump between various things. It's hard for me to stick to one thing. I go out in the garden to do one thing and, you know, next thing I'm doing 10 other things, I'm deadheading that, I'm weeding, and I never even get to where I was going. Self -soothing, I've always picked at my skin, which is I hate to talk about it, but I, you know, I feel like that's... 

Kristen Hovet
Raising my hand. Me too. 

Sarah
You do that too? 

Kristen Hovet
Yes. Yeah. 

Sarah
Okay. I feel less bad. What I normally do is there's this weird hypervigilance where, if I'm sitting watching TV, especially it's the worst time, I am just constantly touching my skin all over it to find if there's this imperfection, it's got to be picked off. Well, picking it off just makes it bleed and makes it worse, but I don't, I just have to get rid of it.

Kristen Hovet
Stimming toys, sometimes that does help. 

Sarah
I have heard on your podcast, you discussed those and I have been meaning to try that out. So I'll have to do that. thing is a lot of these things in some ways, I'm really good at it. Like I'm really good. Like I'm a really hard worker. I'm really focused. I'm really, but on the other hand, there's the other side to all of these things where I'm also terrible at them. Special interests, super, I don't know if it even counts as special interest because I get the impression you're supposed to have like one or two, but I have like 10, you know? 

Kristen Hovet
I think that's more common for, yeah, for like level one and high masking. Yeah. 

Sarah
Okay. Okay. It's almost like anything that I get into, I just like, I really love old movies. So if I watch an old movie and I'll see like, you know, a car or a building or the next three hours I'll be investigating New York City skyscrapers and where that building, finding exactly on the map where it is. That sort of thing. 

Kristen Hovet
The autistic rabbit holes, yeah. 

Sarah
Yes, yes, exactly. I've always been into the Beatles. I was like about seven years old when the Beatles came on Ed Sullivan and I've just been a lifelong fan and fanatic. And so I have a massive collection of Beatle photographs I've downloaded from the internet and they're in order and by year and by, you know, not by date, by exact date and by exact event and that sort of thing. One that's sort of a problem for me is words and language.

And I have read a little bit about this, that this can be something that autistic people experience. I am hypersensitive to incorrect grammar, even though I'm sure I use a lot of it myself. When I hear it on other people's certain things just, and I drive my husband crazy because anytime on television they say a wrong thing, I say the correction. My dear sweet husband is so patient. He just laughs, you know, he'll ignore me or something, but.

I've always been that way, but in the past few years, it's gotten to almost like very distracting. And sometimes depending on my emotional mood at the time, I will get to where I can't speak or I can't write because every single word matters, especially if it's something important, like if it's something, you know, there've been a lot of issues with between my family members. And if I try to write about something like that, I am just like, so. 

Kristen Hovet
I can't remember if you told me, did you say you also suspected ADHD? 

Sarah
There have been so many diagnoses over the years, just OCD, bipolar, regular depression, anxiety, just everything. And one thing after another. 

Kristen Hovet
You talked about being a teacher and how you were different from the other teachers in terms of relating. But I would imagine that is a difficult job when you have so many sensory issues and when there's so much to process. There's so much stimulation just from everything that's going on. So how did you handle that? 

Sarah
Not very well. I feel like my autistic traits have been exacerbated and have become more problematic, more noticeable over the years. Cause I don't remember like as a kid, being bothered by bright lights, but you know, for instance, that was one of the issues I had in school because I was sort of considered like a troublemaker teacher because I would speak my mind about things like

I guess you're not supposed to. But one of the instances was assemblies in the auditorium. The principal would leave the lights on, on the kids, on the crowd. When they're supposed to be watching a performance, you know, a play or a talk or whatever, you put the light up there and you dim the lights down here. That's kind of a real good cue. And the kids aren't seeing each other as well. And they're focused. But she had this thing about, she wanted to see what the kids were doing. And I not only thought that was stupid, but I

was really bothered by the lights in my eyes. I spoke to her about it and she was very, you know, just had no interest in hearing what I had to say about it. I didn't though, and maybe I would have if I'd known, because I didn't know at the time, I would have maybe said to her, look, I have sensory issues and this is very problematic for me. Like, can I wear my sunglasses or, you know, if you are not going to, you know, do this for the logical reason, you know, at least

I need to do something about it. I might've known to say something or do something, but instead it was just this constant like upsetting thing for me. Like why are the lights on? And then of course noise, you know, the kids. I was very well liked by what we called, I don't know, I think you're Canadian? 

Kristen Hovet
American Canadian. So originally from North Dakota. 

Sarah
Oh, okay. So you, you probably know like we have gifted classes. Whenever I worked with the gifted kids, they loved me.

Because I think they, a lot of them probably have the, some of the same issues as me. Like they didn't like the noise. It was distracting. It would, you know, certain things that I would be very strict with my kids. Like, you know, the school rule is single file line, quiet in the hallways. Well, a lot of teachers just didn't care. But to me, it was like, not only is it the rule and do I think it's more considerate for the other people and stuff, but I need these kids to shut up and stand in line. You know, I need them to be

organized, together, quiet. And in the classroom too, I'd have many situations where I would say to the kids like, heads down, quiet, just put your head down on your desk, quiet down, calm down, right? I would need to do that. And now I know why. And so I think that also I was considered odd. And over time it got worse and worse. And in the end I had what is known as a nervous breakdown.

Couldn't deal with everything, just it was became too much. I honestly think if I had known about my autism when I was in college, I would have chosen a different career. I loved so much of teaching, but I guess for the reasons we're discussing, it really wasn't the best fit for me. 

Kristen Hovet
From email exchanges, I know you have a very different opinion about being autistic than I do. So while I personally don't want my autistic brain changed at all, nor would I ever, I would want some of the co -occurring health conditions related to autism taken away. I have talked about these before, I think, on the podcast, but for new listeners, these would specifically be hypermobile Ehlers -Danlos syndrome and mast cell activation disorder, the last one being the most troublesome for me. 

Sarah
Tell me again, what that, I learned about that from your podcast, but I'm not exactly sure I remember the details. 

Kristen Hovet
So it's an immune system disorder. Basically the mast cells, which are immune cells are overactive. Sometimes people have more of them, but I think usually it's just, they're overactive. So, all of us have different triggers. For me, it's certain types of foods and ingredients that will set off, like will trigger it. So, I spend a lot of time just like dealing with reactions and trying to stay away from things. 

Sarah
Okay, so is it like allergic reaction sort of? 

Kristen Hovet
It looks like an allergy like to another person, it would be like an allergy. It looks like an allergy, but, it's different. The pathways in the body are different a little bit. Like there's some similar things, and that's why it's so hard to get a diagnosis for the most part, unless the doctor really knows what they're looking for. But it often goes together. Apparently like the Ehlers -Danlos, autism, mast cell often goes together. So I would just love to be able to, you know, get some kind of genetic treatment or something. 

Sarah
Yes, for those things. 

Kristen Hovet
Not to touch anything up here. 

Sarah
Right, exactly. Not how your brain works, but those issues.

Kristen Hovet
Yeah. 

Sarah
I can understand that. 

Kristen Hovet
But I do feel also when I'm reacting that I feel more autistic, if that makes sense. 

Sarah
Yeah, sure.

Kristen Hovet
To get back to your email, you wrote, quote, while I love that you talk about seeing the strengths we have and that we don't need fixing, honestly, I'd love to be fixed, end quote. So I totally respect that we have different stances on this and different backgrounds, but I'd love to understand why you feel this way. 

Sarah
Can you remind me when you were diagnosed, how old you were?

Kristen Hovet
So I was, it was two days before my 39th birthday. So a few years ago now. 

Sarah
Okay. So that's considered pretty late. I think for me, if I had been diagnosed earlier, like I'm going to be 68, as I said, it was around, I think when I was 63, maybe 64 and a few years ago that I was finally, and I self -diagnosed

because I spoke to my psychiatrist, my psychologist, someone else who basically, and your, the information I got from you, the information, other information online. I just felt I don't need anyone to tell me I know what this is. But my parents were wonderful people in their own way, but they weren't the best at handling emotional issues. There's a lot of mental illness

come down through both sides of my family. So there's a lot of depression, anxiety, a lot of issues within our family and neither of them really seemed to want to acknowledge them. So I feel like I grew up unhappy, fearful, and again, feeling like I don't belong here. I don't understand how I'm supposed to be. I did play with kids. I had friends. I have friends. Nevertheless, there was always some sort of thing that I felt

not right. And I suffered a number of bouts of, I had two what are called nervous breakdowns. From what I'm learning about autism, I just feel like the things that I'm learning, like these issues are also somehow related, like depression and anxiety and bipolar and or if it's misdiagnosis or whatever. But you know, as I said before, I've been through a lot of those diagnoses. Just a lot of, a number of episodes of

suicidal depression, like very, very dark. Just a lot of struggles, just being made to be known, whether, however people did that, if they said something or they just in some way indicated that, for instance, the people I worked with when I was a teacher, you know I got along with everyone fine. And there was a couple of people I was close to, but I was definitely sort of thought of as a weirdo. Number one, I'm...

definitely politically liberal. A lot of these people weren't. I am an atheist. None of them were. So just right there, even like in the lunch room, things that people would talk about, like I didn't want to get into political fights with anyone. So I'd usually just shut up. Occasionally I might speak up if they were saying some nonsense I thought was ridiculous, but for the most part, no, they would just sort of make comments. Sarah, she's blah, blah, blah. And

of course I'd never said anything for the most part. Occasionally I might give a little snappy comeback, but mostly I was just like, God, you know, but it was also, I was angered, which is probably why I didn't say anything back. Cause I didn't want to get into anything, but it made me angry that people just felt it was okay to somehow act as if there was something wrong with me because I wasn't like them. And I think I had a lot of very hurtful things and I,

ended up, I guess, building up a lot of resentment over the years. I guess why I would want to not be autistic, because I would want to go back in time and not be autistic so that I wouldn't struggle with these things that I struggled with. Does that make sense? 

Kristen Hovet
Yeah. I guess my next question would be, do you think then that's more to do with living in a neurotypical society or one that values neurotypical traits over neurodivergent traits? 

Sarah
Yeah, 100%. I don't mind being what I am. In a lot of ways, I'm happy. I love that I can get into subjects. I love that my IQ is very high. At least it was, it probably isn't anymore, but yeah, no, I think that's a good point. I think it is not so much the autistic traits. It's the reaction to them and the experience and the difficulties I've had throughout my life that if I could have not had them,

then I might've been a happier, more successful, productive person. Because what happened to me in school actually was I burned out because I am so, so dedicated to my work and so interested, I would, at one point was spending like pretty much 18 hours a day on schoolwork, you know, in school, stay late at school, bring work home from school. I was sleeping like three hours a night. If I was lucky.

That really burned me out and the other issues we discussed, you know, feeling like this outcast and it took over my life. And I was, you know, had little time for other things. The only thing I was able to fit in was my husband is a musician and I'm a musician and we've played in a lot of bands and played a lot of gigs and stuff. That, fortunately, I did get in there and do some of that even throughout the worst of times. I mean, when I was in my deepest depressions,

they would drag me up on stage and I would be able to play, you know? And then I'd go back in the van and hide until was time to correct papers. And then it'd be time to go home. My husband would pack up, you know, they would pick up the gear. I guess that answers the question. 

Kristen Hovet
Yeah, it's curious to hear others' experiences, because I feel like I grew up feeling similarly to you. I'm trying to see like where or why I'm so like pro -autism or like... I'd love to keep it kind of thing. And how I'm so, I'm almost offended when I hear that people are trying to find genetic cures or something. 

Sarah
Genetic cures, yeah. 

Kristen Hovet
Because it's almost like the same thing eradicating women or something because socially like women have had it harder, you know? And sometimes you hear women say, I wish I was a man. So to me that kind of sounds similar, but I do, what you're saying is completely understandable, is what I'm trying to say. 

I guess like I'm trying to see or figure out why, in my head, I see the autism as, as like the good part, I guess. And the other things as sort of the troublemakers or the, but at the same time, I know that being autistic has, has led to the same challenges or similar challenges where, you know, people make little comments. And for me, I'm lucky and privileged in the sense that I, I wasn't like bullied, you know, directly bullied and things like that, but I was high masking. So there was a lot of energy in like, how does one do this human thing? 

Sarah
Yes, yes, yes!

Kristen Hovet
So that feels like I was draining myself for like most of my life. And then when I had the autism diagnosis, I was like, my gosh, like it explains everything. 

Sarah
Yes!

Kristen Hovet
And so I think that was so positive that that's maybe, it's kind of trickled down to like all my sort of opinions on it. I don't know. 

Sarah
Right. That makes sense. Of course. Well, a couple of things, I think if my parents had been more aware of how their comments or how they were also making me feel like an oddball, you know, like there was something wrong with me, if they had been more supportive and understanding, and of course they didn't know, I mean, I mean, you might just know that it's your child and that's how they are and just love them and help them. But even if you don't know about autism, but

they had their own issues. They married. My mom got pregnant before they were married. She was 19 when I was born. My dad was 20. They ended up having five kids over the next few years. In terms of growing up with not having even that unconditional loving support from your parents, I think if I had had that, it would have been sort of a shield to maybe some of the outside stuff. I think too,

like my negativity, I think when I wrote you, I was feeling especially negative because our whole family has been through a major spate of misfortune and tragedy over the past four years. And just briefly, I'll say, we went to Ireland for my brother's son's wedding and my brother's a little bit of a volatile mess. And he was annoyed for some reason at us, my husband and I, and he just had a meltdown and was

screaming at us and calling us names and saying we're selfish and we're this and we're that. And then he actually grabbed my husband and threw him up against a wall and held him by the neck and was up in his face like, you know, his big old red face in my husband's face holding. My 80 some year old parents are standing right over here. We're at the top of a big flight of stairs. My brother just lost it. I mean, it was beyond anything like he's, my brother's been known

to, whatever his issues are, he's been known to decide that he has to tell people everything he hates about them. My sister was at his house one time for a party. After we all went home, he woke her up and sat there and yelled at her and told her everything bad about her. So, you know, this is the kind of stuff he does, but you know, in between times we would get along, he definitely, he got arrested twice for road rage incidences. This was like, to me, the last straw.

I'm not going to be treated like this. And it was awful because we went all the way over there for a wedding. So, and he told us we weren't invited to the wedding anymore. So we had to let grovel so the next, we would be allowed to go to this wedding we came all the way to Ireland for And of course we were just completely uncomfortable because we were not really even sure what we did that upset him so much. Like we irritated him by making some complaints about our travel. Cause my husband is terrified of flying. We ran into a lot of trouble. We hadn't

flown or gone overseas since 1999. Like we really had a hard time and we dared like speak about some of it. I decided that was it. I basically told my family, I'm not coming to Christmas. I'm not coming to this or that. I'm not expecting you to uninvite him. So I guess we're not coming. My husband and I always did. That caused a lot of trouble. My other siblings took his side. How can I be so mean? You know, he, he's sorry for what he did. Why don't you just let it go and

number one, he didn't apologize. Number two, even if he did, that's a start, but it's, you got to recognize throwing someone up against the wall and grabbed by the neck, that's just so far beyond acceptable behavior. And I don't want to be in a situation where if he might suddenly decide to do it to me, or, you know, it was just like my stance for my own mental health, my own feeling of safety was I'm not going to be around him, you know, until he somehow says,

I see what I did, I know it was wrong. I guess I need to get some kind of help or whatever, you know, but no, it was all just, and it just turned into this, know, then, then, so this was 2019 in the fall. Then of course, COVID 2020. Then in the summer of COVID, my dad started getting sick. In the fall, my dad was diagnosed with pancreatic cancer. He died 67 days later. That was all a mess too, because helping my mom with my dad, he did hospice at home and helping my mom

was difficult because of all the estrangements and tension between members of the family. And then December 26th of that same year, my brother fell to his death in front of his two young adult children. He was helping them build this business, doing this batting cage thingy kind of business. He was up on some scissors lift that he didn't really know how to use. And his son said, don't get up there, dad. But he said, no, no, let me just fix it. And he fell.

Bled to death on the floor in front of his two young sons. You can imagine, I'm estranged from him. Everyone's mad at me anyway. He now he's dead. Then people start, not quite exactly, but insinuating that somehow him, that was my fault, cause he was upset, cause I wouldn't forgive him or whatever it was. My mom would say things to me like about that, you know, just.

It's just been, and then, okay, then the next, that same fall, my brother's husband got acute lymphoblastic leukemia. The next spring, my husband was diagnosed with prostate cancer, a very aggressive form of it. He's gone through surgeries and all kinds of radiation, all kinds of treatments, so we're dealing with that. Then the next summer, I had a back injury, serious back injury while gardening,

such that I have a problem with my foot now. It doesn't work properly. And a month after that, my youngest sister was diagnosed with stage four uterine cancer. Now, right when I discovered your website, after the Ireland thing and the estrangements and stuff, and I was going through these suicidal depressions and I was like, I've got to figure out what's wrong. My therapist who I've been seeing for many years,

I dropped her because when I told her about the autism, she was like, I don't really know about that. And I think we have other issues to work on. And I was like, no, no, you don't understand this. This is the epiphany of my life. Like I said, when I, when I read my husband, all the stuff, he cried. And then he said, did you write that yourself? You know, it was so everything about the HSP, autism, the whole thing was me. So, so to me, this was such an amazing epiphany, but

my dad's dying, so I want to share it with them, but, I sort of been hoping, expecting maybe it will help my family understand me a little more, like how this traumatic event in Ireland was not something I was just going to get over, you know. I think having discovered it at that time, hoping that maybe it would make some understanding happen and then it didn't, you know, then all of the stuff that came after that, after

my knowing, then my husband's cancer, my sister's cancer, my loss of function, all these things that happened. I think that's all kind of tied up. It's like, not that I blame, not that I tie it to the autism, but it's almost like having discovered it at that time and all of these issues that have happened along since then, I think has influenced my ability to figure out how to accept this, understand it.

I mean, I understand it too, in terms of it's definitely me and how, looking back on things in my life like, oh my God, okay, now I see what happened there. I guess that's what I'm trying to say is I think that's part of also my sort of negative bent, even though it's really not fair, I think, to blame the autism. I'm just have been through so much lately and I'm just trying to hang in there. I think that also just makes me, I guess, think back to the

the difficulties I had and leading up to now and it's like, now I could maybe handle the difficulties now if through my life, I'd handle difficulties better. I think maybe that's a big part of it. 

Kristen Hovet
I just want to be clear that I have no judgment that you think that way like at all. So I just want to make it clear because I think a lot of listeners are coming from different backgrounds and different experiences, different families. So I think we're all going to see it differently and I want to make that okay and acceptable.

If that makes sense. I will kind of like say, oh I don't agree totally, but I totally accept wherever you're at with it. And that's true of anyone else listening. So I just want to be totally clear about that. Cause it sounds like you have had lots of family toxicity, I would say, and lack of acceptance and lack of understanding from like most people around you except, thank goodness, your husband. 

Sarah
Yes, thank goodness.

Kristen Hovet
But a lot of people, it's been very, very challenging. So I totally hear that. And I just want to acknowledge that. 

Sarah
Well, thank you. I appreciate that. I did want to mention something of interest, I think maybe to your listeners and to you. After this discovery, and actually, the funny thing is, 10 years or so before all of this, one of my cousins actually discovered that her son was labeled at the time Asperger's and she is

married to a famous baseball player. So she had the access to write a book about it. Number one, it's in our family. My sister's oldest daughter also went through difficulties in school. First she was called retarded, then she was different labels and stuff. They said like, she'll never count money. She'll never do this. She can do all of that. She's fine. But in the end, I think they decided that she was Asperger's or at least on the spectrum as well. So that's kind of

interesting to me in terms of like the fact that I do have it because I understand it can be familial. Then a really interesting thing happened when I was still really struggling. This was last year, I believe. I do genealogy, which is another of my special interests, and a distant cousin, we just got to sort of communicating through one of the maybe Ancestry or Find a Grave or whatever. And then she said finally,

let's talk. So we finally spoke on the phone. And when I was talking to her, I was talking to her just like I am now, just talking really fast, saying all the things and being like sort of nervous about it. I said to her, I'm really sorry. I said, I know I overshared. I just, that's just how I am. I just, I'm sorry. And she goes, don't apologize. And then she goes, can I ask you a question? Um, do you think that you...

or anyone in your family might be autistic? And I was like, yes, oh my God, yes, yes, yes, yes. And she goes, well, I and my two children definitely are autistic. And she talked about things like masking, which I knew a little bit, but she says, I'm working on dropping my masking. I'm raising my children so they don't feel, you know, just, she's very educated about the whole thing.

She said her understanding is that it is very heritable and that she thinks that most of her family members are also autistic, but none of them really want to hear about it. Like her siblings, she said are supportive, but they don't see that they are, and her parents just think it's ridiculous, the whole thing. So, which is interesting to just, and we talked a lot just about the feelings about it and what we go through and

that was when I finally, 100 % was like, nobody's ever going to tell me I don't have autism again. Nobody's going to tell me it doesn't matter. Nobody's going to tell me it's not important. And I just was so grateful to her for being brave enough to say to me, do think you might be autistic? Cause, you know, she's run into it with her family and other people just not wanting to hear it at all. So that was just a really affirming experience for me.

Kristen Hovet
How do you envision your future now that you have this understanding of yourself? 

Sarah
I did have to, I think I said, drop my 15 year therapist because she would not take, I knew at the time that I was just really discovering the thing. I just found your website. I was just learning about it, but I knew once I went to some of the links you had offered, that was when I had read my husband everything, and he was like, oh my God, yes, that's you.

So I was at the time like, this is the most important thing I need to understand about myself. I need help. And my therapist saying, sorry, I don't do that. And I don't even think it's that important. It was like, you're done. You know, I have to find someone else. And it took me about two and a half years went without any therapists, which I'm used to having that support in my life. And finally, I think it was about six months ago,

I found someone, actually a year ago, I found her, but she wasn't able to take patients. She put me on a waiting list. One day she emailed and said, I have an opening. Are you still interested? And I said, well, absolutely. And she's wonderful. And my, my outlook for the future is that I think I'm going to be able to come to terms with the whole situation, the whole, the whole thing that we've talked about,

that I feel very anxious and as you know, sometimes angry or very negative about. I feel like she's going to help me be able to accept, deal with, and learn ways, you know, she, when I go into it, she always turns the lights down low when I come in. And she's taught me things like I'm afraid to go into doctor's offices because I can't stand the televisions blaring in there and I can't stand the bright lights. And she just gives me very like, duh, it's kind of like, why don't I think of this myself? But

she just says things like, well, go in there, have your earbuds, have sunglasses. And she gave me this wonderful little gift. She gave me this inch and a half flatish glass, smooth, I don't know, just rubbing my hand against it helps me feel calm. These are the kinds of things that are helping me deal with the issues that have in the past been so difficult, so upsetting.

Kristen Hovet
So the other thing I was going to say when you were talking is one thing that's helped me, and I don't know if you've tried this before, but EMDR. 

Sarah
She brought that up as well. And I know years ago, the therapist I was seeing was going to do EMDR with me, but somehow we just never got to it. And I don't know what happened with that. The therapist I'm seeing now does not do it, but the therapist across the hall does. And she recommended I might want to try that out. 

Kristen Hovet
It's helped so much. And just in a few sessions because I'm similar in that in my 20s, I was in therapy for most of my 20s and it was, it was like traditional talk therapy. So that helped me out of some difficult times. But if I had known about EMDR sooner, I feel like I would have saved some money and time. So yeah, no, it's amazing how fast it works. 

Sarah
Yeah, I'm so glad to hear that it worked for you. I also will say that in between when my friend said it worked for her and recommended the service and I went there, I had read some negative press and I read some articles that suggested that it was basically kind of like a hoax. It didn't do anything. It was just silly, stupid. And so I was like, oh, well, I guess I'm glad I never did it. And then when I brought it up, when she brought it up, my current therapist, I told her what had happened and she said, you know what? I'm not sure, you know, if I remember reading that, she goes, but I believe that it helps.

I know a lot of people who have been helped by it and so you might want to just give it a try. So now hearing from you that you've also tried it and it's helped, that's encouraging me. 

Kristen Hovet
Yeah and I also, when I first heard about it, this was after I was in long -term therapy, I had similar reservations because they can't really explain, they have theories about what's going on in the brain and why it works, but they don't know exactly.

And so I thought it sounded too woo for me, like too out there. 

Sarah
Yes, exactly! That's what I thought. 

Kristen Hovet
Yeah. So I wanted tried and true methods only. And so I avoided it like the plague. 

Sarah
Science, science, science. 

Kristen Hovet
Yeah, exactly. And so I avoided it. And then I just kept hearing more about it. I had friends going into it as actual EMDR therapists and then hearing all these accounts of it helping and so quickly.

The one tip if you ever do it, like a lot of them do the eye thing and I find eye too much for me, maybe because of my own sight sensitivity. So I instead did tapping. 

Sarah
Interesting. Well, another thing that scared me was when I first heard about it, it was described that you had to verbally express the trauma. And I was like, no, I can't do it. I can't talk about the trauma. But now I've heard you don't necessarily have to say your trauma out loud. 

Kristen Hovet
No, you don't. You have the option to, depending on the therapist. You definitely would ask the therapist beforehand because I think it kind of maybe depends on the individual therapist. But my therapist, and from what I know the majority won't make you say it. They'll get you to do, before you even start the EMDR, you'll go through sort of like memories, but they'll just prompt you to think about them and they'll write down like what, what that makes you feel or what belief has developed because of that trauma. 

Sarah
Wow.

Kristen Hovet
And so that's all they know. They don't need to hear the dirty details of the, you know, you don't have to rehash it to a new person because I know that's hard after sharing with therapists over the years. You don't want to share again and again and again and again. 

Sarah
Right, okay. That's very helpful. 

Kristen Hovet
I'm curious to know, you said you're a musician. What instrument or instruments do you play? I'm just curious. 

Sarah
Well, mostly now I play electric bass. 

Kristen Hovet
Cool! 

Sarah
Yeah, now, my husband plays any instrument he puts his hand on and he's left -handed yet he can pick up a right -handed instrument and make it sound good. When we first got together, he would be out a lot playing gigs and I would always be like, you know, you can go and listen to your husband's band, you know, a few times, but for me, especially cause I don't like to be in crowds and you know, it was like, that's enough of that. But then what? Cause he's always gone. And then I finally figured out, wait a minute.

If I could be in the band and I would be out there with them, that would make it completely different. And it was funny too, because all my life I was attracted to musicians. My first real boyfriend was a musician. I finally figured out, I should have figured out. I say this to all young women. Like I was always looking up to these musician men and like admiring them, which is fine. But it never occurred to me instead of saying, you know, I want to be with that man to be say,

I want to be a musician. I don't have to sit here just like admiring him. like, that's something, at least for me, that really was the right thing to do. And I also play guitar and sing a little bit. Learning recently why my grandmother used to always say, don't get old.

Because, you know, things are just, you know, I'm having trouble with some arthritis in my fingers. So playing bar chords on the guitar is difficult and it swells up, but I can still play my bass and my Fender bass weighs about a hundred pounds. It's really heavy, but it's solid and I love it and I can still play it. So I'm very happy about that. I do also need to learn rather than dwelling on my difficulties, which sometimes I end up doing, do more of what I like. I need to play more.

Kristen Hovet
A huge thank you to Sarah for being my guest on The Other Autism podcast. And that's all I have for you today. Thank you so much for being here. Until next time, bye.