Episodes
Friday Nov 01, 2024
Sharing Our Autism Story EP 6
Friday Nov 01, 2024
Friday Nov 01, 2024
There is more than one way to share our autism story! In this episode of Autistic POV, I talk about my experience sharing my own story through memoir writing and online media—with a focus on what did and didn't work for me and why.
I also chat about my substack blog, my special interest blog and other resources. I promised to provide links these, so here they are:
Metaphysical blog (special interest blog) MysticReview.com
Substack blog (some special interest posts plus autism podcast episodes and articles) BarbaraGraver.substack.com
My article Autism and the Narrative Process (barbaragraver.substack.com/p/autism-and-the-narrative-process) touches on Julie Brown's book Writers on the Spectrum. The book is more geared toward fiction, but I found it helpful.
Link for my Podbean website (as mentioned in the episode): AutisticPOV.com
My autism diagnosis / bipolar misdiagnosis episode is EP 3 in app or online at https://www.autisticpov.com/e/late-autism-diagnosis-bipolar-misdiagnosis-and-being-vulnerable/
Please consider following and / or sharing the podcast!
If you need closed captioning, please listen via the podbean app or through my site: AutisticPOV.com
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Theme music by the Caffeine Creek Band
Monday Oct 07, 2024
Job vs. Calling: An Autistic Perspective EP 5
Monday Oct 07, 2024
Monday Oct 07, 2024
My experience with working a job vs. following my calling and how this relates to autism. As a late diagnosed autistic, I now feel that my original job choice was actually a form of masking that interfered with my ability to engage in my true calling. In this episode, I talk a bit about how that happened and why I think it's so important for autistic people to embrace their special interests, honor their true selves and follow their unique calling. #autismacceptance #autistic #autism
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Episode Transcript:
0:06
Welcome to Autistic POV. My name is Barbara Graver and I started this podcast to share a bit of my journey as a late diagnosed autistic. Hi everybody, this is Barbara Graver. Thank you for joining me on this episode of Autistic POV. Today we're going to be talking about work versus calling.
0:31
In other words, a job versus what you were born to do. And the reason I wanted to do this, well, two reasons. The first was that when I did our last episode, the Autistic Reading Roundup, I talked about several books that I'd read, science fiction books, several memoirs. And these were all books written by autistic authors.
0:54
And all of these authors or their characters struggled to find what it is that they were meant to do. And I think that's a struggle that is pretty much universal, certainly not confined to the neurodiverse. But in all the memoirs I read, autistic people had a lot of trouble with work. They had trouble fitting in at work.
1:16
They had trouble finding the right place to work. They had trouble dealing with colleagues. And I certainly have experienced that too all my life. So I think work is a big issue for a lot of autistic people. Certainly has been for me.
1:30
And I think the key to all that is the kind of work that we choose to do. That's my theory. So a job, it's the even exchange. You give a certain amount of yourself and you get compensated. And what you're giving may not be who you are. It may not move you.
1:51
You may not feel passionate about it. You might not enjoy giving it, but you do it to get the compensation. And sometimes this is okay. This can be okay. I've had jobs where it was okay. But I think a calling, on the other hand, is something you would do even if nobody paid you.
2:08
You would still show up because you love it, because you're not just making an exchange. You're sharing something of yourself that you need to share, that you feel called to share, that you want to share, and that you love to share. And I think this is huge. Particularly for me,
2:27
my special interest was always had to do with, I guess you would say communication, which is a little ironic because I'm very bad at face-to-face communication. But I loved communicating through story. I would draw a series of pictures that told stories. I would stay awake all night pretending and constructing these elaborate worlds in my mind and characters.
2:54
And I would escape into that all the time. And I loved it. I would write the stories down. I would illustrate them. I would make little books. I just loved it. And I always had social problems. But when I was younger,
3:08
I was kind of able to fit in with the neighborhood kids because I grew up in the 60s and 70s. So That was when playing pretend was a big deal because we didn't have a lot of the stuff that kids have now. Like we had to create our own worlds. And I was always really good at that.
3:26
I was the idea person when we would. want to create a pretend scenario, I was the one who did it and did it well and had the ideas and kind of kept things going. And so that was an outlet for me. It was a way I could interact with other kids for a time.
3:45
I mean, obviously, as I got older, that no longer worked. The point is, story was always huge to me. I loved to read. I loved to watch TV. I loved media. I loved to draw. I was very creative and it all kind of revolved around the idea of story. But as I got older,
4:05
I began to look at more and more, look at other people and how other people were living and how other people were acting. And as I experienced more and more social setbacks and social troubles, I decided to model myself more and more after other people. In grade school, I even changed my handwriting.
4:26
I still have two completely different kinds of handwriting because there was a girl who was very popular, and I would actually copy her handwriting. I started to write like her because I wanted to be like her. And I fell into this, this is my dog shaking her collar. I began to mask.
4:47
I began to want to behave like other people because that was safer than behaving like me because I didn't want to target on my back. I didn't want to be different. Even if it meant not being creative, even if it meant not doing the things I loved, I wanted to be like other people.
5:01
I wanted to blend in. So I worked really, really hard at that all through high school. I worked super hard at it in college, and it was stressful. And I'll talk more about masking and the toll it took on me maybe in another episode. But I think picking a career became part of the facade for me.
5:21
I wanted to do something that was normal, quote, and acceptable. And I wanted to be just like everybody else. And it's kind of sad when you think about it, that you have people who maybe could be an author or playwright or artist,
5:39
and they don't want to do any of that stuff because they don't want to be outlier. They want to be like everybody else. And that was where I was at. So I went away to school the first time. I majored in experimental psychology. And I did have an interest in experimental psychology, and I still do.
5:55
But college was not for me. I found college very difficult. I left school. I came back a few years later. And at that point, I had a child and I wanted to be practical. But more than that, I wanted to be ordinary. That was my goal.
6:09
And it's so sad to think now that there are a lot of us who could be extraordinary. And still, what a lot of people still want most is to be just average. And it's sad, but Average does not put a target on your back, and exceptional does. And I wanted to be average,
6:31
and I'm not saying anything against the career I chose because I've known people who, when I decided to be a nurse, and I've known people who have gone into nursing who are exemplary nurses. They're extraordinary nurses. They're so good at it, and they're so gifted at caring for people, and they're so intelligent,
6:50
and they do a great job. And I'm not putting that down. But I didn't choose nursing for those reasons. I chose nursing because it was what everybody else was doing. And I wanted to be like everybody else. So even though I didn't have a great aptitude for science, I mean, I could get through science,
7:10
but my real aptitude was for English. When I took my SATs, my English score was practically double what my math scores were. And Part of that was because I didn't go to school, but also part of it was because that was my natural aptitude was always for English. I always tested really, really high on things like that.
7:34
That was my special interest, and yet I chose to major in nursing because I wanted to be just an average girl with an average family. And I got my nursing license, and I went to work, and I raised a family, and I tried to do things the way other people did things, and it just imploded.
7:58
It definitely imploded. But I think what really is... The main way that it was damaging for me was that I was so sensitive and being in the hospital and being around people who were being brutalized by modern medicine was extraordinarily traumatic for me. I had a lot of trouble coping with it.
8:25
And I did it, but I just was hanging on like by the skin of my teeth the whole time and It was just really awful for me. It was really hard. And sometimes I think I did a good job, and sometimes I did a mediocre job, but it was not where my gifts slide.
8:43
And I think that's true of a lot of people. I think a lot of us, we want an identity, a specific identity, and we want to keep our heads down, and so we pick something safe. And there's no true safety in that. I don't think there's any true safety in that, I think, ultimately.
9:01
that situation can become at least emotionally unsafe for a lot of people. And that's what happened to me. And when other stresses in my life began to pile up, I got to the point where I couldn't do it anymore. And I talked a little bit about this in the last podcast, too.
9:18
But my point is this was a form of masking for me. To be a nurse was a mask. I actually envisioned myself not as somebody helping people or making a difference, but as a typical girl in a white uniform fitting in.
9:35
That was where I wanted to be, and that's what I did until I couldn't, until I couldn't do it anymore. And it was always hard for me. I never really fit in with the other nurses and I never really felt, I always felt like I was struggling just to, just to do a good job. And
9:58
I was somewhat successful. I got promoted everywhere I worked. I was in administration and supervisory positions, and I wrote policies, and I was always good at solving problems. So people like that. Administrators like the person who sees the problem and writes the policy. They like that person. And so I always was getting promoted. And that was fine.
10:22
That was fine. But I never really fit in. I was never happy. I was very stressed. I was just always, always terrified of making a mistake. I would wake up in the middle of the night worrying. I did like people. I liked the patients. I liked helping people. I did like that.
10:38
But it just wasn't who I was. And I think that is an issue. I think that's something everybody's susceptible to. Certainly everybody, everybody has a work identity and a home identity. Everybody likes the idea of having a certain persona. I mean, there are people who are doctors or lawyers or bartenders that they love that persona.
10:59
Like it makes them happy and there's nothing wrong with that. But I think that if you're autistic, you have to be very careful about what, you ask yourself to do and what you expose yourself to. And I never really was. When I was in school,
11:19
I would get up in the morning to go to clinical and I would just feel like I did when I was in grade school. I would feel so stressed and like sick and shaky and depressed and everything would seem so dark and awful and I just I didn't I wasn't
11:35
diagnosed and I thought everybody feels like this everybody feels like this and I'm the baby that can't push myself through this so I was at a big disadvantage in a lot of ways but I picked picked the wrong thing and I kind of paid for it because I
11:52
spent a lot of years I spent about 13 years I guess in nursing and that was kind of all for nothing because I'm not doing that now and I'm not going back to it. And so my education and a lot of my work experience was just kind of wasted. And not only was it wasted,
12:10
but it took up time that I could have spent doing what I really wanted to do, what I really love and what I'm doing now, which is writing. And that the time I spent doing the wrong thing, the job, took away from the important thing, the calling. And I'm lucky. I feel I'm lucky to have realized that.
12:31
I feel I'm lucky to now, at this point in my life, be writing full-time and able to do that. And I'm really grateful for that. But I do think that masking had a lot to do with why I kind of went wrong. And writing in full-time, even though it's my calling, is not 100% problem-free. There are issues...
12:55
I think, related to autism that have to do even with pursuing your calling. And I might talk a little bit more about that in the next episode. But I do. I'm writing fiction full time now. I'm blogging. I'm doing the podcast. I'm thinking of writing memoir. I'm writing, writing, writing. I love to write.
13:16
I could write 16 hours a day, probably. I try not to, but I could. And That's pretty much what I wanted to say about masking and working and calling. I think it's really important for anyone who is autistic to try to find work that is as closely aligned to their calling as possible.
13:44
Obviously, getting a job as an artist or a novelist does not... really thing and it's hard to do and it's competitive and there's a lot of challenges inherent in that but there are a lot of careers that are adjacent that can be very fulfilling to people and I think it depends what your love is your
14:09
special interest might be highly highly practical if you have a very practical special interest if your special interest is has to do with technology In any form, you're probably a little bit ahead of the curve as far as working. If your special interest tends to be more creative,
14:26
you're going to have to be more creative to find that thing that you could either do part-time or that thing that you could do full-time that might be adjacent. But I do think it's possible. And I think the main point of it all is not finding the right
14:44
job i think the main point of it is honoring who you really are and i think if i had to say one thing that really tripped me up it was not honoring who i was and that's what masking is and that's why masking is so detrimental it's just such a
15:03
soul crushing terrible thing to mask and i just wanted to share a little bit of my experience and in hopes that this would kind of resonate with someone else and that if you have a special interest if you're especially if you're a younger person like going
15:23
into the workforce for the first time look at your aptitudes and look at your special interests and look at what makes you happy and try to find something if you can that's close to that like try as hard as you can And I know for me,
15:39
it was very important for me to have a secure job and to take care of my child and to be a productive person. But being yourself is really, that is why you're here, I think. And to do what brings you joy and brings other people joy, hopefully. And if you're lucky, pays the bills. But that, to me...
16:02
If I had it all do over, that would be the last thing on my list. I have to say that honestly. So as far as my writing, I do have issues around writing that are autism related. I have issues with plotting. I have issues with multiple issues with storytelling that makes it difficult for me.
16:24
And I'm going to talk about some of that a little bit more in the next episode. But this is it. for today, kind of all over the place. I hope it was helpful, and I will see you next time, and until then, this is Barbara Graver of Autistic POV, and thank you very much for listening!
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Theme music by Caffeine Creek.
Tuesday Sep 10, 2024
First Autistic POV Reading Roundup (books by autistic authors) EP 4
Tuesday Sep 10, 2024
Tuesday Sep 10, 2024
In my first reading roundup I talk about a wonderful Sci-Fi series and three incredible memoirs. All of the books covered are written by autistic authors. The memoirs detail the lived experience of three amazing late-diagnosed autistic women. And the Sci-Fi series features an autistic protagonist central to the adventure. Just as interesting, in my opinion, the theme of finding our true autistic calling is central to each of these books. All of the books featured are available in ebook. They are:
Xandri Corelel Series (affiliate link) by Kaia Sønderby : 0. Testing Pandora, 1. Failure to Communicate, 2. Tone of Voice
Drama Queen (affiliate link) by Sara Gibbs
Label Me (affiliate link) by Francesca Baird
U Don't Seem Autistic (affiliate link) by Kathleen Schubert
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Episode Transcript
0:00
This is Barbara Graver of Autistic POV and today we're going to be talking about four books by autistic authors. Welcome to Autistic POV. My name is Barbara Graver and I started this podcast to share a bit of my journey as a late diagnosed autistic. Hi, this is Barbara Graver.
0:29
I'm so happy you could join me for my very first autistic POV reading roundup. So we're going to be talking about four different books, actually one series and three memoirs. And the reason I chose these books is because they all kind of center on a common theme. And
0:48
this is the theme I want to explore probably in our next episode, but I'm going to talk about the books in this one. The first one is a sci-fi series, and this series is written by Kaya Sounderby, and it's the Zandri Corello series. series, and it begins with a fantastic book called Failure to Communicate.
1:13
The second book I'm going to be talking about is Drama Queen, written by Sarah Gibbs, and this is an amazing memoir. It's my favorite autistic memoir I have read to date. It's fantastic. And then I'm going to talk about two other memoirs a little more briefly, primarily because they go along with the same theme,
1:32
and one is called You Don't Look Autistic, and you in this is spelled with a u, Actually, You Don't Seem Autistic is the name. And the last one is Label Me. So we're going to talk about all these books. And I'm going to try to explain why I like them and why I think they're,
1:50
they're all have a lot of value. And I do want to say with memoir, like I've heard people say, there's so many autism memoirs out there and that's true. There are, but I feel like all of them have value. Like every autistic memoir I read,
2:07
I resonate with or pick up on something different and I find them all helpful. They're helpful on multiple levels. I think they're helpful in terms of making you feel a little less alone. They're helpful in giving you insight. And they're helpful in terms of learning and support. I think they serve multiple purposes. And these books,
2:29
all of these books, and I just want you to kind of keep in mind as we talk about them, all deal with the importance of our calling. So the first series I wanted to talk about, the first book I want to talk about is the Zandri Corello series. And this is a sci-fi series.
2:49
It's set in just an amazing world. It's just a wonderful world. And the characters are great. And one of the things I loved about the world was the diversity of the world. And it shows... quote alien species as not all humanoids not they're not all guys in suits and i
3:08
understand why i i watch a lot of sci-fi and i read sci-fi and i like sci-fi and i understand why say star trek like all the quote aliens had to be able to be an actor in a suit and understand why the humanoid ideal is always or often represented in sci-fi,
3:29
and that every species encountered is a variation on the human ideal. But I really like the fact that this author, that Kara Sounderby, treated the various races throughout the galaxy as being capable of evolving from different types of life forms, different species. So there might be a species that's like dolphins.
3:56
There might be one that's very like various kinds of mammals. There might be others that are humanoid. And I thought this was a really cool way to present this. And the book was really, really well constructed. It was plotted out very well. It was suspenseful. The characters were engaging. The main character, Zandri, is autistic.
4:18
And I thought the author did a really good job of that, of portraying the challenges and the strengths of autism really well. And she is the heroine of the series. She's not a peripheral character. She's the heroine. And she has unique abilities to communicate, which seems kind of ironic, but really the way it's presented in the series,
4:41
it isn't, to communicate with different types of cultures and different languages and different kinds of people throughout the galaxy because of how she'd had to learn to do that as an autistic. And it's really well done. It's really suspenseful. It's a really great series that has three books. There's a kind of a prequel called Testing Pandora.
5:06
Then there's Failure to Communicate. And then there's Tone of Voice. That's book two. Testing Pandora is book zero. Failure to Communicate is book one. And Tona Voices book two, and I hope she writes book three, I really do. And I really liked the theme of this, of the autistic protagonist struggling, struggling with people, struggling with her past,
5:30
struggling with all kinds of things. But also finding her niche. She finds her niche in this. She finds her calling. And that's kind of a theme with all these books. And I think it's an important theme. And the second book I wanted to talk about is a memoir by Sarah Gibbs.
5:45
And that is called Drama Queen because that was something she was told all her life, that she was being dramatic. And that's a very common theme. charge, I think, that's leveled at autistics. It may come in various kind of deliveries, but it's a common thing that's said. And she focuses a lot, she focuses obviously on her childhood,
6:08
everyone talks about their childhood in these memoirs, but she also focuses a lot on her work life. And she does an excellent job of showing how she didn't fit in in the standard office 9 to 5 and why. And how other people treated her and how unfairly she was treated and what a double
6:28
standard really there was for people who were neurotypical and people who were autistic in general. And she was diagnosed relatively late in life, and I identified with a lot of what she said. Now, not everything. I never identify with everything people say in these memoirs, and I don't really think you should.
6:47
But I did identify with the fact that she was always making these fresh starts, and that was something I did really all my life. So she would just get overwhelmed and she would walk away from things like jobs and make a fresh start. And she was always making a fresh start. And I used to do that too.
7:07
I actually, I think between the ages of maybe 17 and 20, I didn't live anywhere. And by anywhere, I mean different states, different cities for more than six months. I just kept leaving and making these fresh starts that always failed. And she has the same mentality. She's like another fresh start.
7:30
And so I really, really identified with that. And another thing she talked about that I found really insightful is obsessiveness. And for her, a lot of her obsessions had to do with relationships. She would get very, very obsessed with either someone she was in a relationship with or someone she just had a crush on.
7:50
She even called it her crush monster. An interesting thing is she talked about how once she found out she was autistic, that kind of went away. And the reason it went away was because she understood that she was looking for something. She was looking for an answer in these partners, in these romantic partners.
8:13
She was trying to find an answer. she found that she was autistic. She had an answer for why life was so difficult for her, and she didn't need to do that anymore. And I thought that was brilliant. And I've kind of experienced that too. And I'll talk a little bit more about it.
8:29
Maybe we'll do an episode on spirituality at some point. But for me, my answer was not so much relationships, although I did some of that, but spirituality. I was always looking for an answer in terms of either organized religion or different specific spiritual practice. And I went through so many religions and so many spiritual practices.
8:53
I was like the perennial seeker. And I would go kind of from one thing to another. And not just when I found out I was autistic, but when I started to really think about it and integrate it and understand it. and kind of gain some perspective because of it,
9:11
that need to be immersing myself in different spiritual practices just kind of evaporated. It was really, really surprising. It just isn't really there anymore. And when I read that in Sarah Gibbs's book, I thought her crush monster for me, it was like crushes on spirituality more. The same thing kind of happened to me.
9:32
And I thought that's really interesting. So I'm kind of curious if anyone else has had that experience. And the other thing I really appreciated in Sarah Gibbs' book and Drama Queen was that she needed to find out what it is she did. And it turned out to be writing comedy. And the book is just brilliantly funny.
9:54
And I think that's a testament to how much this was her calling. And I feel personally that people with autism are probably more focused on calling and career than a lot of neurotypical people. I think it's oftentimes very central to who we are. At least it's central to who I am.
10:16
And trying to find my calling has been something that has kind of haunted me all my life. And I was always very creative in terms of writing and art, and yet I couldn't ever really find where I belonged. So I find it interesting that in all of these books, the fiction and the memoir,
10:36
that was also a big theme. And Sarah Gibbs could not function in an office environment, no matter how hard she tried. And yet when she began to explore comedy, which is a really challenging thing to be a comedian or to write comedy, is very competitive, I'm sure, and very challenging. I'm sure the bar is set very high.
10:59
as is the case with a lot of creative things, but I think particularly comedy, that's a tough pick. It's a really tough pick. And yet that was where she excelled. And I found that very interesting. And it just did me good to read the story of somebody who struggled,
11:16
kind of like I struggled when I worked as a nurse in an office environment. I was never, never part of the in-group. The office politics were kind of always skewed against me. And I'll talk more about that, I think, in another episode. But it's so difficult. And like Sarah says, it's not about doing your job.
11:38
She always did her job very well. It was about the social aspect of fitting in in the office. And that was my experience, too. And I think a lot of us have that experience. So I just love to see that she, quote, made it.
11:52
I love to see that she became a comedy writer and that she wrote this amazing book. It's just a good thing. to, uh, to know. So I love that. And then the two other books I just can mention briefly were You Don't Look Autistic, and that's you with the letter U, and Label Me.
12:13
And these were both books written by autistic women. And I really especially liked Label Me because I The author of Label Me, her autism presented a little bit differently. Francesca Bard, I believe her name was, or Baird. Her autism presented quite differently, I think, than mine does, but yet I could identify with parts of it.
12:34
And one of the things that she did was she got very attached to places. And I have that a little bit. And I think there's so many ways that we try to develop a sense of identity. And I think this is one way that we often do is by getting very attached to place.
12:51
And so I thought that was interesting. And with You Don't Look Autistic, which I believe that's Kathleen Schubert, but I'll put it in the show notes. She talked a lot about masking. And I think too, in both of these books, you don't look autistic and label me finding their calling, finding their, their place,
13:14
their calling in life was very important. And for, for Kathleen, it was, she got into integrative medicine. And she actually had problems because she was interviewed by a very unfriendly, kind of skeptical journalist and made to look very bad in the media at one point. But she didn't give up.
13:37
And that's what I think is so amazing about all these stories. One of the things... that nobody's giving up nobody's giving up no matter how hard it is no matter how much they don't fit in no matter how hard it is to find their place and to realize
13:52
their calling and to be seen and to be true to themselves and kind to themselves and overcome their challenges they don't stop trying and I think that's huge I think that's really huge And eventually all of these people learned to stop masking. And I think in Label Me, Francesca found a different sort of a calling.
14:19
Like she didn't find necessarily a creative calling, other creative aspects of her job having to do with finance that she was very good at. But she found a place that felt safe to her because her place was important. She found a steady job in a place that felt safe.
14:34
And she was able to do well there because of that. So it's a question, I think, of honoring ourselves and valuing what is important to us that is kind of the underlying key to all this. So I just wanted to kind of do the reading roundup of these books. Again, this is the Xandri Carrello series,
14:59
Drama Queen by Sarah Gibbs, and You Don't Look Autistic and Label Me. And I think a common theme in all of these, which I find really interesting, is calling, finding our calling. I'll put links to all these books in the show notes. They're definitely, definitely worth reading.
15:15
And I would sort of like to continue for the rest of August. I'd like to continue... really with two topics that these books kind of suggested to me. And the first is autism and career versus calling that I'd like to talk about. And I'll mostly be sharing my experience on this.
15:35
And the other one I would like to talk about is writing a memoir, issues around writing a memoir, because that's something I'd like to do And as I said before, even though people say there are a lot of autism memoirs out there, I think there's always room for more because I read them all the time.
15:55
I love them. I think they're so helpful. Some are better than others, but they all teach me something because they're a human story, a story of another autistic person's struggle. So I want to encourage myself to write a memoir, and I want to encourage other people to write a memoir.
16:14
So these are going to be the other two episodes I'm going to do in the month of August. And that's it for today. I hope you enjoyed my first reading roundup. And I also hope that you'll consider following the show or subscribing or liking it or whatever you feel called to do.
16:33
And I will see you again soon. And our next episode will be discussing career versus calling from an autistic perspective. And until then, this is Barbara Graver of Autistic POV. And thank you so much for listening.
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Theme music by Caffeine Creek.
#autism #autismpodcast #autisticauthors
Thursday Aug 15, 2024
Autism Diagnosis, Bipolar Misdiagnosis and Podcast Update EP 3
Thursday Aug 15, 2024
Thursday Aug 15, 2024
In this episode, I talk a bit about being misdiagnosed with bipolar disorder for 20 years, prior to getting my (correct autism diagnosis) and why I've switched gears with the podcast. The memoir I mentioned in the episode is Drama Queen (affiliate link) by Sara Gibbs. #autism #late-diagnosis #misdiagnosis
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Episode Transcript
0:06
Welcome to Autistic POV. My name is Barbara Graver and I started this podcast to share a bit of my journey as a late diagnosed autistic. Hi everybody, this is Barbara Graver and I'd like to welcome you to the show. Today I wanted to talk a little bit about late diagnosis and particularly my late diagnosis and
0:32
And you may have noticed that I changed the intro to the show a little bit, and that was because I listened to my first couple episodes, and the first episode was kind of just me talking, and the second episode was more informational. And I thought it's nice to share information,
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but that's not really what I had in mind when I started the podcast. What I had in mind was just sharing my experience, my point of view, hence the name. So I redid the intro to be a little more reflective of that. And I also changed my plans for this episode a little bit too.
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Initially, I was going to present facts and some of my experience, but facts too. And I decided that you guys could get that anywhere. And what I would like to share is my experience. I've been reading a lot of autism memoir and books by autistic writers and one
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thing that I find particularly helpful is when I resonate with something someone says and I never resonate with all of it because we're all different. We're all different people and different people have different issues and different talents and different abilities and different ways of looking at things. But there are commonalities.
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And I think after a lifetime of feeling alienated and alone, when I read something by someone who we share a commonality, it's helpful to me. So that's where I'm going with the podcast. And I wanted to talk just a little bit today about my own diagnosis. I got diagnosed very late in life.
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I grew up in the 60s and 70s when people didn't really even know what autism was and if there was any concept of it at all it was Hans Asperger and his work and the idea that mostly mostly boys were autistic or only boys were
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autistic so there was nothing to fall back on and my parents I think like all parents of that era felt that the best thing they could do for their kid was to make sure you could function in society. And just like everybody else, no matter how hard that was, that really didn't matter.
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They thought they were doing you a favor if they forced you to be able to function as seamlessly as possible in society. So there's a lot of pressure, a lot of pressure to do that. My mother used to make excuses for me.
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She'd say things like I was the youngest kid in the class and I was an only child and these things were supposed to explain some of my problems, but they really didn't. And I got other explanations, too, that were not so positive. And, you know,
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I was often told that I was selfish and uncaring and just like my father who may have been autistic. And I was made to feel very defective growing up. And I tried very, very hard to fit in. And I never really succeeded. And it's kind of funny looking back. I look back and I think,
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grade school was horrible but I think in high school I was actually able to do it I was reading this really really good book by autistic writer and I'll link to it in the comments and she kept talking about her fresh starts like all her fresh starts
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and that was what high school was for me and I turned myself inside out at a very high cost to fit in and quote be popular And it was kind of funny because I actually thought I fooled everyone. And now, looking back, I think popular girls, they get a pretty bad rap, and oftentimes it's deserved.
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But I think looking back on my experience in high school, I think people felt sorry for me. And I think people were, some of the girls I hung out with were just plain gracious about And it wasn't necessarily that I fooled them, but I tried. And the effort, the Herculean effort to do that caused me, I think,
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to have my first probably autistic burnout when I was still in high school. And that was really severe. And there were a lot of other problems that went with that. Maybe I could talk about that at some other time. But I can't say that I knew I was different because
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because I didn't know when I was young that someone could be different. I thought I was just defective. I thought my difference was that I thought life was that hard for everyone. I thought I didn't try hard enough, and I just didn't really understand why things were so hard for me. I thought I was selfish,
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and I thought I was lazy, and I thought I was all kinds of things, but it could have never occurred to me that I was autistic. But I was able to eventually get through college and have a career for a while, even though it was very difficult.
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But I was able to do it for a period of about 13 years. And my self-esteem, I think, was so low because the thing that was hard for me was I knew I was reasonably bright, but yet I made all these terrible mistakes. And the only explanation for that was that I was just being a fool.
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I was just foolish. I was just impulsive, and I was just so many bad things. And I got that feedback consistently probably throughout my life. And eventually I hit a wall. And I had been working as an RN for about 13 years, raising a single family, having meltdowns, like struggling, finding life really, really difficult.
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And finally we had a family tragedy that happened that made life, went from extremely difficult to impossible. It was just impossible for me to cope with this tragedy. And I experienced what I guess would be severe autistic burnout at this point. It was almost like a breakdown. And I just couldn't cope anymore.
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I could not do it anymore. My employer went out of business, and I was glad. I was glad he went out of business because I had to stop. And so I entered the mental health system at that point. And I was told I was bipolar. Like so many people are, I think nowadays.
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And, um, I was put on medication for a time. I was on a lot of medication and it never helped. And I kept telling people it's not helping. And when you tell people that, um, what they tend to do is just put you on more medication. And this was in the early 2000s.
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And autism in women still wasn't really well known at that point. So I don't necessarily blame anyone for that. But I do feel that somebody should have realized that I was not bipolar. And so I ended up on medication. I did go back to work as a nurse. And it was terrible. It was still terrible.
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And I kept telling people the medication isn't helping for a period of about Almost 20 years I told people that, and they basically didn't listen to me. And finally a family member was diagnosed with autism, and as happens to so many people, I started reading about it because I wanted to understand what they were going through.
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And as I read it, I identified with more and more things that I read. More and more things seemed to be oddly like me. And so I met, actually met with the psychologist who had identified, diagnosed the family member. And I said, you know, it's the funniest thing.
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I'm reading this stuff, and I feel like it sounds like me. And I expected her to say, don't be silly. And I said, I wonder if I should have an evaluation. And instead of saying, don't be silly, she said, I think that might be a good idea. And I was really taken aback.
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that this could be the issue, this was in 2022. And I had my evaluation, it took, well actually I think it was in 2021 when I spoke with her and it took a period of time to get all the ducks lined up with insurance and scheduling and all that stuff. But I had the evaluation.
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It was a very good evaluation. It was very extensive. And I was given the diagnosis of autism. And she told me she didn't think I was bipolar at all. And I did have some other comorbidities, such as anxiety and mild depression, which I think anyone, well, I shouldn't say anyone,
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but I think a lot of people who live their whole life as undiagnosed autistics will end up with anxiety and depression. I think it's very, very likely. So I got the diagnosis, and initially I was really excited to have it because I had been telling people for 20 years I didn't think I was bipolar,
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and I had been telling people in particular 19 years, I guess, and I'd been telling people in particular quite, quite often for probably seven years prior to that. that something else was wrong. I kept saying something else is wrong, and one of the reasons I thought that was because of problems I was having with writing.
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I was trying to write full-time at that point, and I considered myself talented as a writer, but yet I was still having these terrible, terrible problems with constructing plots and with staying on a storyline and the actual structuring of the story. And I knew there was a reason for that.
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And I knew it had nothing to do with being bipolar. And that was one of the things that kind of moved me to keep telling people over and over again there's something else wrong. And I'll talk more about autism and how it has affected me in terms of my writing in another episode,
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but that was part of what motivated me. And when I got the diagnosis, I was really excited. It was like, here's a new thing. It was like my new special interest. I'm reading about it. I'm learning about it. I'm talking about it incessantly. And people were not receptive to that at all.
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I think it embarrassed people on my behalf somehow. And I am very, very reactive to any kind of shame or humiliation. So as soon as that happened, most people would just stop talking about it. But I stopped thinking about it. And I stopped reading about it. And I just kind of set it on the back burner.
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Because this is kind of... Kind of a mechanism, a coping mechanism, I guess, on my life when I get negative feedback on something, I would just totally kind of carve it out of my personality or my life. And so I kind of did that. And so two years went by, and I really,
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aside from my initial couple of months of learning about it and thinking about it, I didn't really do anything to process it at all until I ran into trouble with my writing. I didn't really try to understand why autism affected my writing particularly or what I might be able to do about it.
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I just kind of went back to writing, and I completed a manuscript. And when I completed it... I was very happy to have finished something, and as it turned out, that story just basically failed kind of across the board. And that was very difficult for me,
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but it served a purpose because it brought me back to looking again at autism and how it affected me and what that meant. And I don't even know if it's right to say how autism affects you because when you're autistic, that's who you are. You have a neurodivergent brain.
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It's not like something you catch or something that happens to you. There is no you really separate from that. And at any rate my own unique neurobiology and what it meant and why it made it hard to construct the kind of fiction other people were constructing and so I came back to
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that and I started blogging about it a little bit and I started talking about it and I started learning about it and I started to realize how much I had to process I really had to process a lot and I think that the work of doing that is worth sharing.
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So I want to share that as I do this podcast. And I'm really just at the very beginning of it. The only thing I would say I've really... possibly began to process is the idea that I'm a vulnerable person. I am vulnerable. I'm not necessarily to blame completely in a vacuum for every mistake I've ever made.
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I basically never really had anyone to help me. Even though I was involved with the mental health system for 20 years, I never really had anyone who actually helped me. And part of that was my own fault because I masked in a phenomenal way and I never let anyone help me I thought being helped
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was a sign of weakness and I did did everything myself pretty much all my life so I can't necessarily blame blame other people for that although I do I do think that probably the mental health providers I saw had some responsibility to get things right but they didn't
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And now I'm coming to it and I've got a lifetime of regrets and missed opportunities and mistakes and burnt bridges behind me. And it's, it's a lot to wrestle with. It really is. But just that one idea that it's not all my fault and that, I'm not to blame for everything. It's a good starting place.
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So what I'm doing right now is I do see an autism therapist, and she's very good. She's helpful, although I've been seeing her for two years, and I'm just getting to the point where I'm starting to trust her. So there's that, and I'm starting to do free writing every morning, which is helping, and I'm reading memoirs,
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and I'm going to talk about that more next time, what I'm reading and how that helps. And I just like to share it here. So that's why I redid the intro. I don't want to, like, try to set myself up as some kind of expert.
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And I'm glad I did the episode on free writing because I wanted to learn about it. And I'm finding it helpful. And I hope other people are too. But that's not the tone of the podcast I want to have going forward. That's not my plan. So that's it for today.
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I just wanted to share a little bit about what I'm looking at with the podcast. So you could decide as a listener if it's something you want to follow. I hope it is. But either way, I just want to put it out there. So the next show, I'm going to talk a little bit about what I'm reading,
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I think, and how that's helping me, and a couple books I've read recently that I liked. And I guess that's it. So if you liked the episode, please consider following the show. If you think it's something someone you know might be interested in, please do share it.
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And that's it for today, and I hope to see you next time. Until then, this is Barbara Graber of Autistic POV, and I hope to see you soon!
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Theme music by Caffeine Creek
About Me
Welcome to the Autistic POV podcast! My name is Barbara Graver. I'm an autistic blogger, designer and upcoming author. I was diagnosed with autism in 2022 after spending almost twenty years in the mental health system receiving treatment for a disorder I did not have! I started Autistic POV to share my journey as a late diagnosed autistic in hopes that it might help someone else feel a little less alone.