Getting a Diagnosis as a Woman on the Autism Spectrum, with Becca Lory of GRASP | EDB 58


In this episode, Harold Reitman, M.D. speaks with Becca Lory, the director of development for GRASP (Global & Regional Asperger Syndrome Partnership), and a woman with Asperger’s syndrome. Becca is a great neurodiversity advocate, and tells the story of her journey, from struggling in school and work, to dealing with severe depression, to an initial misdiagnosis of schizophrenia, to finally receiving a diagnosis of Asperger’s at the age of 35. Becca also discusses the unique challenges women have in receiving an autism diagnosis.

To learn more about GRASP:

Visit www.GRASP.org

Or e-mail info@GRASP.org

And look for Becca on Facebook:

www.facebook.com/becca.lory

 

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HACKIE REITMAN, M.D. (HR): Hi, welcome to another episode of Exploring Different Brains. I’m Dr. Hackie Reitman, and today, we have a wonderful guest—Becca Lory—who is the director of GRASP. And she’s gonna tell you the rest of what it stands for. And I’m very glad, and Becca herself has Asperger’s. So welcome to the show, Becca!

 

BECCA LORY (BL): Thank you, Hackie, it’s a pleasure to finally be able to do this with you, even though we’ve known each other kind of in and out. And it’s really a good time to be able to support what you’re doing with Different Brains. I love it.

 

HR: Well we want to support what we’re doing with GRASP. And I think the best place to start is to tell us the story of your diagnosis because you were not diagnosed for a long time.

 

BL: No, I was not. I did not get diagnosed until I turned 36. I had been in and out of having misdiagnoses most of my life. And it was uncomfortable. I lived kind of a suffering life. It was not pleasant. It started in school very early on. I had a very high IQ, a very high reading level. But I struggled in math, and at that time the New York City Public School System didn’t understand how you could be good at one thing but not good at something else, and put me with a reading tutor. That was the solution. So I kind of got diagnosed with multitude, which is sort of the story of many adults on the spectrum. I got diagnosed—

 

HR: Well let’s back up a little bit. By the way, you have a wonderful name, Becca.

 

BL: Thank you!

 

HR: Who’s been trying to teach me for years—I mean, she was not diagnosed until she got her discrete math degree from Georgia Tech, and had different diagnoses. But she also had other issues as well. But she’s been telling me for years, and now more and more in the interviews I’m doing with Tania Marshall, the author of Aspien Women and all that, that there’s a reason for that in the sense that—well for multiple reasons actually—and I’d like in this point in your narrative for you to say why is it that women can kind of fake it and kind of be mistaken more easily for neurotypical or other labels.

 

BL: I’m gonna say that’s a two-fold answer. It’s not so much that we can fake it, it’s that our phenotype is different meaning that the way that the autism expresses itself in women versus in men, it’s distinctly different. And because of society, it’s not noticed. So as a little girl, I was always opinionated and I always had a big mouth. But when I was in school, I was the little girl sitting in the corner reading. And the majority of girls who grew up on the spectrum without a diagnosis sut in a corner during recess or they’re in class and sitting there quietly not bothering anybody with their face stuck in a book. And everybody says “Aw, what a good girl she is. She doesn’t bother anybody, she’s reading a book,” and you get all these compliments. Where as the male phenotype tends to be more aggressive, more vocal, more behavioral. And so it’s squeaky wheel gets the grease, and that tends to be I think why girls get more misdiagnosed or something else other than what it is going on for them.

 

HR: Well that’s great and now let’s rejoin your story. So you’re growing up, you’re being misdiagnosed, you’re being mishandled in the schools, and then what happens?

 

BL: So it is not by coincidence that I turned 18 in 1994 when Asperger’s hit the books. So I was literally an adult the year that Asperger’s syndrome hit anything. But there was nothing my teachers would’ve known to do, nor any of the clinicians that my mom was taking me to. And as I went into college, I didn’t think I was a college student. I thought I was really stupid. I had been told by my teachers that I was stupid because I learned differently. I was told, and bullied actually by my teachers more than anybody else. And I really left saying I wasn’t a college student, what am I going to do with my life? I have to be like a mechanic or something. I’m gonna have to do something with my hands. Like I’m not somebody whose academic. Partially because we don’t test well. And what ended up happening was I went to a community college. Just to kind of make my parents happy. And at community college, I had straight As. And I had a professor there, who is an ex-Harvard professor who is teaching at the community college for fun. And he said you don’t belong here. You belong in a real school you belong in a four-year school. Go get your bachelor’s degree. And I did do all of that, and I was very successful within a very tiny environment. That mini—college is half life. It’s almost life but not real life. And I did very well there. And then I finally said okay, I should really address whatever’s going on for me. And my last diagnosis prior to Asperger’s was actually early-onset schizophrenia.

 

HR: Oh, boy.

 

BL: Yeah. I went to a clinician. And I said, “Okay, I’m going to be honest with this person. Even though I’ve been burned so many times in the past.” I said I’m going to tell her everything that’s going on. And what I literally said to her was, “My brain is very, very, very busy. It’s very loud, it’s very busy, and there’s always a lot of conversations happening at the same time.” And she said, “Oh, I hate to tell you this, but you have early-onset schizophrenia.” Now as somebody who’s been reading, for a very long time, I first of all said, “That’s not schizophrenia inside my head.” And I also said, “it’s not early onset anything. Because if I had gotten it in my twenties, it wouldn’t be early-onset schizophrenia.” So I said, “Well, thank you very much but I disagree.” And I walked out. And I said, “Okay, I don’t trust the medical profession anymore, and I certainly don’t trust psychiatrists now.” So I went about living my life the best that I could. Which was a series of jobs that I would succeed at, crash, burn, start a new job. So I did thirteen jobs in fifteen years.

 

HR: What was the crash-burn? What did that consist of?

 

BL: Most of the time, I would do something that I had never done before. I would interview well enough to make them decide that it was a job I could do. So one of the first ones was in commercial construction. And I then got promoted to be a project manager. And as a project manager, I was running these huge commercial job sites in Manhattan—Verizon and companies like that. And then eventually, the people who’d been doing it for a lot longer than me and a lot older than me got angry and jealous and I got bored because it was easy for me. And I started to pay attention to the social conversation that happens in a work place. And because I struggle with social conversation, I would get frustrated. And I was always somebody who would notice that was going on and say, “Well, I’m going to quit before they fire me.” And I would quit because some things, some triggers, triggered me off and I would tell people off and I’d quit and I’d walk out the door.

 

HR: So now, you were 36 when you finally get your diagnosis. How did that come about?

 

BL: Well starting at about, I’m gonna say 32 or 33, I had done another one of those cycles with a job. Ironically I was a bartender. And it was the best job I ever had, I loved it. And they wanted to make me a manager.

 

HR: Hold it, hold it, hold it.

 

BL: Here it is!

 

HR: Bartender, which probably reading a lot of social queues?

 

BL: Yep!

 

HR: And a lot of socialization.

 

BL: Yep!

 

HR: You loved it and you felt at home. Explain to me why you think that was.

 

BL: Okay to me, it’s a really, really simple, simple thing. People imagine that you have to read social queues and you have to constantly be having conversations and the way it is portrayed in the movies. But the truth is as a bartender, you serve somebody their drink , and at a certain point, everybody gets drunk and they no longer even do their own social queues correctly. But also, you have this big giant piece of wood between you and the people that you’re serving. And so if I feel like walking away, I’m done with the social, or I don’t know what’s going on, all I have to say is, “I’m sorry I have a customer down there I have to take care of, I’ll be back,” and walk away. I get to control the social situation. And I also get to create the personal boundary with a piece of wood between me. So because of that, I was in control of the entire social interaction all the time. So for me, I was extremely successful until they decided they wanted me to be the bar manager. And that’s when it all went. Because now I’m not just responsible for myself, I’m now responsible for the other employees. And if anything goes wrong within the bar itself, so you’re constantly running around. And at that point, it was anxiety, anxiety, anxiety, anxiety, and I just I can’t do this anymore. And hours were—I mean I did them because the hours were good to me. I’m a night person. Not a morning person. I was never in rush hour traffic. I was always doing reverse transportation to everybody else.

But I became exhausted. It becomes an exhausting routine to be opposite of the world and the times that they’re running. And I just said, “I’m done, and I’m leaving.” And I just literally left. I said I can’t do this anymore and I quit. And I went—at the time I had moved back to my mom’s house. And I went into my bedroom and I said, “Mom, I’m not leaving the bedroom.” And that was I say about, 32 or 33. And got into my bed, got into my pajamas, grabbed my cats, and said “I’m not leaving my room.” Closed my bedroom door, and for three years, I laid in my bed. I said, “Clearly, I’m not meant for success, I’m not meant for this world, I’m broken, nobody can figure out what’s wrong with me but I know something’s wrong with me. I know I’m not a good enough person to be out there in the world. I don’t have anything to offer.” I made so much negative self-talk. And after years of doing that, I was extremely suicidal. And that’s something I’ve only recently started to share with people because it took me a while to process through myself. And I was very, very suicidal. And my mom, at one point, had reached a point where she said, “If you really want to kill yourself, go ahead and do it.”

 

HR: Wow!

 

BL: “Because I can’t see you this miserable. Like you never leave the house. And I can’t see it.” And I said, “Well I don’t do it because I don’t want you to find my dead body. I can’t imagine anything sadder than being a parent finding their child’s dead body.” So for three years we lived in this. I had had migraines my whole life, and I had a change in my migraines or what used to be the auras of my migraines. They were always visual before-hand, and then all of a sudden I was getting a smell. So immediately I said to myself, “Well okay, clearly something is going on. My mom didn’t smell the smell, I only smelled the smell.” So I started journaling how often, what it smelled like, trying to describe it, all kinds of stuff. Went to my neurologist, nothing was wrong. All of these things. But what I ended up on was WebMD, because that’s the source for all information that is verified.*laughs* And I was looking for olfactory hallucinations at that point, having heard the word schizophrenia before. I was looking for a kind of brain tumor that might be affecting my olfactory system. And I wasn’t satisfied with what was on WebMD.

So I went to the better source, which is Wikipedia. *laughs* Everybody knows Wikipedia has the answers to everything. And I went on there, and was looking it up, and I managed to get myself to sensory processing disorder. And as I read about that, I said “well this is really familiar to me. I’m very sensitive to smells and tastes and touch and all of those things, but especially light.” I said “this is very interesting to me. Maybe this is what’s been going on my whole life.” And I get to the bottom of the article, and there’s a link to Asperger’s Syndrome. And I said, “I’ve never heard of this Asperger’s Syndrome thing. But now I could possibly have a syndrome. So let me know what’s going on.” So I clicked on it, and I read it through. And I can only describe it in two ways. It was first—like reading my own biography, as if I had written the entire entry about myself. And then it was also as I was reading it, my body physically felt the connection to it. It felt like when you get to the top of a rollercoaster, and you’re just about to go over that first giant, leap, and you lose your knees, you lose your stomach, gravity disappears for a minute and everything kind of just stops. That’s how I felt reading the article. So I said “Okay, this is what’s going on for me. Now how do I figure out if I’m right?” Well the only person who knew me well enough to know that was my mom. But I didn’t want a biased opinion because I’m a science person by nature, so I said “Okay, I’m gonna email her the link and I’m not gonna say anything.” So I did, and moms being moms. She checked her email like three days later or something like that. But she read it, and she walked into my room and she said, “Okay, where do you want to go to get this taken care of? This is it. You found it. You found your people.”

 

HR: Wow!

 

BL: I said “Okay. Well if this is going to be a big deal, let’s go do it right.”

 

HR: Well you know, this is such music to my ears because it makes our team here feel very good about what we’re doing for all these different brains.

 

BL: Yep.

 

HR: Because, they all overlap, and we want people to have that “aha” moment where “I’m watching Becca Lory. That’s my story! That’s me, or that’s partially me.” As opposed to “I’m the only one in the world who thinks like this or feels like this.”

 

BL: It is, it’s extremely isolating when—I mean I’m not a fan of labels, I poo-poo them all the time—but also not having a community, a sense of community, that there are other people like you is extremely isolating, very lonely, and it’s also kind of scary to think that there’s something just so rare about you that you can’t function in the world.

 

HR: Tell us about the transition to being with GRASP.

 

BL: Okay. Well, I was 35 when I read about it. And it was right at my birthday, literally. And my mom said, “Do you want to do it after your birthday?” I’ve always struggled with birthdays, they’re social occasions, you’re always the center of attention, I was never happy. So I said, “Birthdays are already hard, let me wait ‘til after my birthday.” So I went, and a proper diagnosis and evaluation takes—should take—six to eight weeks. There’s multiple sessions, especially for adults who our parents have to come in and get a history. So it took a while to get it. And then in the meantime, I was reading Liane Holliday Willey’s book Pretending to be Normal, which remains to be—to me—the most well-written book for females who are looking to get a diagnosis or understand what it is to be on the spectrum. And it was her story of walking through the whole procedure. And she also got diagnosed as an adult. So it was really like reading my own story, and it was my first way of having a vocabulary. I didn’t have the words to explain what was happening to me. I didn’t have the words to explain what I was struggling with. I literally could not describe it to another person.

So she gave me my vocabulary and gave me confidence that I was doing the right thing and I was reading it in accordance with my evaluation as I was going through my evaluation. Came to the end of it, got out all the paperwork and the testing stuff, and that was done. And it was clear that it was no question I was sitting on some kind of cusp of anything. And I walked out, and my mom said, “Well, how do you feel?” And smartly so because I was sitting suicidal, I could’ve taken the other way. And I said, “Well I feel fantastic. I want to tell everybody. I’m so relieved. I’m entirely relieved, that I belong to a group and I’m not broken. It’s that my brain works differently and it’s so great.” So I took that first year, and I followed their protocol, which was they had given me some book recommendations. They gave me a therapist. They gave me some things that I should be doing, organization I should get involved in. One of which was GRASP at the time. And I kind of just said, “Okay, well I’m gonna work on me for a year. Then I’ve been laying in bed. I might as well not lay in bed. Because I have two choices at this point. It’s a lifetime diagnosis, and I could say ’well, screw that, it’s never going to get better and I give up entirely’, and not do anything, which a lot of people do do. Or I could try and see if I can make things better for myself. And then if that doesn’t work, then I could say screw it and forget it, I’m gonna have it forever which seemed more logical to me.”

So I worked my behind off for a year straight, going to therapy every week, and reading and working on everything in between there, changing my diet, all kinds of things. And a year after that, I was feeling entirely grateful to the people who had, in my opinion saved my life. I was grateful to the people who did my evaluation, my diagnosis, the organizations that have provided me support, and I said, “You know what, I want to start volunteering places.” And I really will give AHA some credit, they were one of the places that was closest to me, and full of resources. And I did say, “can I volunteer with you?” And I worked there for a few years.

 

HR: What place was that? Say that again.

 

BL: AHA. It’s the—I think, now stands for Asperger’s and High-Functioning Association of some sort. I think that’s what the letters stand for now. But it was a place to start, a place to give back. Because if it wasn’t for getting diagnosed, I wouldn’t be there. So I decided to give back my time. And I didn’t care what I was doing, if I was mailing envelopes, whatever. I don’t care. I didn’t want there to be another me. That became my cause. There should never be another 36-year-old woman who’s lived her entire life suffering, coping, and then not getting anywhere. So I started on that path. I became a heavy reader. I read Aspertools when it came out right away. And really, that was sort of my place there. And then I felt like, “I’ve done enough here. And really want—and I’m comfortable with my diagnosis enough, and I’m comfortable with my life enough, I’d like to see where I can take it. Because I really believe this is going to be my first chance to have a career.

 

HR: I want anyone who’s taking this information in to know how to find you and where they can learn more.

 

BL: You can go to www.GRASP.org, you can reach us at info@GRASP.org, and if you’re looking for me personally you can find me on Facebook. It’s Becca Lory, L-O-R-Y, and it’s really me I promise.

 

HR: Well Becca Lory, the leader of GRASP, it has been an honor and a privilege and a lot of fun to have you here today on Exploring Different Brains.

 

BL: Thank you, I had fun as well. It was very much fun.

Author Image
Dr. Harold “Hackie” Reitman is the founder of DifferentBrains.com. He is an entrepreneur, philanthropist, children’s activist, retired orthopaedic surgeon, and a former professional heavyweight boxer. He who currently serves as the CEO of Fort Lauderdale, Fla.-based PCE Media, LLC, the multi-platform production company he founded in 2004. Dr. Reitman wrote, executive produced and co-directed the full-length independent film, “The Square Root of 2” (starring Darby Stanchfield of ABC’s “Scandal”), and is the author of the book “Aspertools: A Practical Guide for Understanding and Embracing Asperger’s, Autism Spectrum Disorders and Neurodiversity” from HCI Publishing. He also hosts the DifferentBrains.com interview show “Exploring Different Brains.”

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