Autism Diagnosis, Bipolar Misdiagnosis and Podcast Update EP 3

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,

0:52

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.

1:15

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

1:40

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.

2:00

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.

2:25

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

2:45

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.

3:06

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.

3:23

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,

3:43

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,

4:06

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

4:23

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.

4:46

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,

5:09

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

5:25

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,

5:43

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.

5:59

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.

6:22

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.

6:51

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.

7:18

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.

7:37

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.

7:58

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.

8:19

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.

8:41

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.

9:02

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.

9:20

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.

9:41

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,

10:01

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,

10:23

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.

10:46

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.

11:10

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,

11:29

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.

11:46

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.

12:07

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,

12:31

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.

12:51

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,

13:08

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.

13:27

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

13:49

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.

14:09

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.

14:34

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

14:57

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

15:19

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.

15:46

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,

16:05

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.

16:21

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.

16:38

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,

16:58

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.

17:15

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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• Please note, this episode includes amazon affiliate links. If you purchase through one of these links, I may receive a small commission at no cost to you.
• Theme music by Caffeine Creek

 

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