Late Diagnosis: Stories about being diagnosed as an adult

This week we present two stories about people who discovered a diagnosis late in life.

Part 1: As a child, TC Waisman is told that she is on the autism spectrum, but her mother refuses to accept the diagnosis.

Since 1998, TC has worked with leaders in large organizations to enhance their personal leadership capacity and make transformational changes to their leadership practice. Coaching and training leaders and public speaking about adaptive leadership for over 20 years, TC has learned to support her clients’ development using organizational best practices and evidence-based research.

TC is an ICF certified coach, holds a Masters degree in Leadership & Training, and is currently undertaking her doctoral degree in leadership in a post-secondary context. Inspired by her late autism diagnosis at 48 years old, her research focuses on how higher education leaders, faculty, and staff can enhance services and outcomes for autistic students in higher learning.

Since beginning her research two years ago, TC has co-founded a not-for-profit society for neurodiverse individuals, spoken on autism related topics, published an academic literature review on 'autism and the implications for higher learning', and was recently appointed as an editorial board member of the new scientific journal Autism in Adulthood. TC is now a doctoral candidate and is in the midst of her research.

TC is of Indigenous Fijian and Nepalese origin and moved to Vancouver in 1976 where she lives with Dean her partner of 30 years. TC is a proud mother to her fiercely funny 23 year old daughter Sunshine and is the author of the book 75 Traits of Great Leaders. TC is on target to complete her doctoral degree in 2020.

Part 2: Growing up, Craig Fay develops strategies to hide how terrible he is at math.

Craig Fay is a Toronto based engineer turned stand up comedian with a “keen insight that allows him to take subjects familiar to everyone and turn them into something new and laughable” (Exclaim). He has appeared on CBC’s Laugh Out Loud, performed at the world famous Just For Laughs Festival in Montreal and is co-host of "The Villain Was Right" podcast, which recently won a Canadian Podcasting Award for Outstanding Debut For a Series. Craig’s debut comedy album “Helicopter Rich” was praised as “observational and self-reflective…worth playing multiple times over” (Exclaim) and is available now on iTunes, Google Play, Amazon and Spotify. You can follow Craig on Twitter For (@CraigFayComedy), like him on Facebook (/CraigFayComedy), or sign up for his email newsletter at CraigFay.com. Or just Google him. You’ll probably just Google him.

Episode Transcript

Part 1: TC Waisman

When I was eight years old, my mom dressed me in my Sunday best and I remember it was really colorful, flowery dress, and it was my favorite dress. My mom packed me in the car and took me to the doctor’s office because she wanted me to be tested for giftedness. You see, I wanted to be a doctor when I grew up but there weren’t many representations of black women doctors in the seventies so my fierce mom wanted to do her best and she wanted to give me any kind of leg-up that she could possibly give me.

So we went to the doctor’s office and she explained to him her reasons why she thought that I was gifted and he thought about it and he looked at me and he knew me well. And he said, “You know, I have an interest in neuroscience and I think your daughter might have something called Asperger’s.” And he used words like ‘disorder’ and ‘social challenges’ and ‘communication challenges’.

I don't know really know how much my mom understood at that time but she made a decision that day that changed the rest of my life. We went out to the parking lot and I remember her getting down on my level and she said to me, “You are very, very bright and nothing is ever going to change that. But we will never talk about this appointment again. We will not talk to your father or to your brothers or to your sister about this.”

I felt deep shame. I wasn’t sure what I did wrong but I knew that I hurt my mom in some way and I wasn’t sure how to fix it. So I did what I thought was best. I never talked about it.

Years went by and I rarely thought about that day. I didn’t want to hurt mom. She was a hardworking woman and she would come home from work tired. And she’d get into her mumu dress which had flowers on it, which was her favorite, and she’d make herself a cup of tea and sit down and that was her joy.

But I tell you what. Any time I put on the Elvis record and I dropped the pin mom couldn’t help herself. She would wiggle a little, she’d jiggle a little, she’d giggle a little. And she'd sashay into our living room and we would have ourselves a good, old-fashioned dance-off. That was my mom. She was a phenomenal woman.

TC Waisman shares her story with the Story Collider audience at Centre Phi in Montreal, QC as a part of a show presented in partnership with Spectrum in May 2019. Photo by Esther Gibbons.

When I think back I know now why the teachers and my family missed the fact that I had Asperger’s or what we now know is under the autism spectrum condition spectrum. It wasn’t easy to catch it especially in my case. I wasn’t showing the usual social challenges and communication challenges. And, because we’re female, a lot of times we get passed in the diagnosis because we present differently than males, so I could see possibly why I wasn’t really fitting into the understanding of ASC.

But there were signs that I had repetitive behavior. And I remember a time in 1979, my friend Stacy Berghauser was having her tenth birthday party and it was the seventies so it was a disco party. She invited her friends and she invited her family and her extended family and we’re having a great dance-off.

Stacy excitedly went up to her family and said, “This is TC. She taught me how to do the hustle.” And so that was it. They brought everybody into the living room, they cleared the center and Stacy and I did the hustle together.

There was a lot of clapping and lots of noise and lots of laughter and more laughter and more laughter and my ten-year-old self wasn’t really sure if they were laughing with us or if they were laughing at us.

As soon as the hustle was done, I made some excuse and I ran out of Stacy Berghauser’s place and never went back. I was embarrassed and I felt stupid and I had a heavy helping of anxiety and self-loathing. I didn’t know then but my ten-year old self wasn’t really sure how to understand this social cue.

In February 25, 2014, mom died of cancer. I was flying home that day from working with an organizational client in Edmonton. I had just landed and I'd gone to the mall to buy my mom a dress, what I knew would probably be her last dress. I got the call from dad and I was in the mall and I was devastated. I was really sad for my family. I was really crushed for me. But I was relieved for my mom because finally she was free.

I wasn’t sure what to make of it. And after a couple of years I started to think about my life again and take stock of it and, somewhere, I remembered that day at the doctor’s office. I thought to myself, “Could the doctor have been right? Could I have had Asperger’s or autism?”

Then I looked at my beautiful daughter’s life, Sunshine and I thought, “Could Sunshine have had autism this whole time and I'd missed all the clues?” So I decided that it was probably time for a diagnosis.

The reason for that was when I saw Sunshine’s life in hindsight, I remember when she was eight years old there was a clue then. She went to play with her best friends, friends that she had known since she was three. Basically she had known them almost all her life and she was having really bad social anxiety. I looked at her and I thought at that time, “Hmm. I wonder if this is normal.”

Then I remember a time when she was ten. We were in the dentist office and the waiting room was packed with people. The sound was really low but then they put a song on and my daughter and I clapped our hands over our ears. We couldn’t handle it. We had a sensory reaction to a high-pitched sound that was in the song itself.

And I looked around and no one else was having this reaction. I think somewhere deep inside I put that away in my heart and in my mind, maybe to be discovered at a future time, but maybe there were signs. So I decided it was time for diagnosis.

I phoned and interviewed many psychologists across British Columbia where I live and I asked them just one question. Have you ever diagnosed an older black woman? You see, I was 48 at this point and I'd been masking for a long time and masking very well so I knew I was not going to be an easy case.

I found one doctor. He and I worked together and on May 17, 2017 I was officially diagnosed. I was relieved for myself. I was very sad for the little girl who was asked to keep this a secret and I was devastated for the child who tried to be a typical normal child and failed year after year, moment after moment, experience after experience.

Then I looked at my daughter Sunshine’s life and I thought, “What does this mean? What does my diagnosis mean? What does it mean to her?”

Sunshine inspired me. She inspired me. At 18 years old my daughter Sunshine moved to England and got a law degree on scholarship and, by the time she was 22 years old, she had graduated at Radboud University in the Netherlands with a Master’s in Human Rights Law. My daughter taught me that autism is not a diagnosis with a period at the end. Autism is being open to all the gifts that the spectrum can give you.

It has been two years since I've been diagnosed and in that time I've tried to stay busy. I co-founded a not-for-profit for neuro-diverse individuals all around the world, I've written academic papers on autism and higher education and I sit on the board of the scientific journal Autism in Adulthood. I’m trying desperately to spend the rest of my life working to make sure that my community is well taken care of and well spoken for and has a voice.

But, really, I’m thinking about my mom and I’m thinking about why she did what she did and I fully understand why she did what she did now. She was protecting me like a mother bear. She knew it was going to be tough enough to be a black woman in the world but how much tougher would it have been if I was a black woman with a neuro-diverse condition. She had no idea but she wasn’t going to take a chance. And I love her for it.

Two months ago, I turned 50. Now, I have high social anxiety, as is my daughter, and this is something that’s on our corner of the spectrum is very, very difficult. Being in front of you, for example, is very difficult for me right now but I decided I was going to have a party.

And I invited all the people whom I loved and I wanted them to know that this party was for them. I wanted the people who came around and knew me when I was 20 and masking and support me and love me now coming out as an autistic woman, I wanted them to know that I love them.

At one point in the night the band had to cheer for me and said, “Let’s wish TC a happy 50th birthday.” And I stood there and I looked at my daughter Sunshine who I was trying to give all the self-love that I could possibly give to her, so she knew that she was going to be okay as an autistic person, and then my husband Dean and all our friends were standing around with drinks in their hand. And I stood there in this red duster, velvet jacket, which is my favorite, and I thought this is my coming-out party. This is me coming out as a 50-year-old black, fierce woman, soon to be a doctor, proud to be autistic. Thank you.

Part 2: Craig Fay

So one of the first memories I ever had about school was sitting in Grade 2 and we were making clocks out of paper plates and cardboard so that we could learn how to tell time. I remember this because I did not get it. I did not understand it at all. I understood how the little hand could point to the hour that was. That made perfect sense to me. I understood that the big hand pointed up that meant o’clock and if the hand pointed down that meant thirty, but everything in between it was arbitrary positions on a circle that somehow represented time and all the other kids were able to remember how those lines made up to figure out time. I did not get it.

But that was fine for me at the time because I knew that all I had to do in order to know what time it was was look at my wrist, press Garfield’s ears so that his teeth popped open, and then there would be a nice digital display there saying exactly what time it is on normal numbers. If it’s 3:47, a three, a four and a seven. We’re done. It’s 3:47 no problem. That worked out fine.

But telling time wasn’t the only thing I was bad at. That same year in school the teacher asked me to take the attendance down to the office and I somehow got lost in a school with two hallways. I got to the office and when I went to go back all the doors looked the same, all the bulletin boards looked the same and I wandered around that school for what felt like half an hour before a teacher finally found me near the gymnasium, which was nowhere near my class. And I was crying and they took me back to class.

Craig Fay shares his story with the Story Collider audience at the Burdock Brewery in Toronto, ON in April 2019. Photo by Stacey McDonald.

I was also terrible with names. I couldn’t remember names. We had some family friends and they're two boys and I knew that one was older and I knew one was younger. I knew which was older and which was younger and I could tell them apart, but I could never remember which one’s name was Kyle and which one’s name was Dane. I couldn’t keep them apart. It always confused me.

About the only thing I was good at at this point in my life was writing stories. I would sit in my room and for hours, for hours at a time I would just scrawl in big, messy, slanted letters, misspelled words across blank pieces of paper mostly cheap rip-offs of movies I've seen and video games I've played. But it just poured out of me because it made perfect sense. At any point in a story you know exactly where you need to go because you know where you are. It’s just what’s happening and then and then and then until you're done. It just poured out of me.

But this one good thing I was good at was so vastly overshadowed by the fact that I was terrible at math. I was so bad at it. I had to learn addition and, like most kids, I first learned with counting on my fingers. One and two is three no problem. My problem was it never advanced past that.

So I understood in theory how if you have one apple and two apples you can put those together and you'd have more apples, but there is no inherent sense about how many that was. You'd have to count it up from scratch every single time. You can’t memorize all those numbers. That’s impossible.

So I'd always say we have one apple and one, two, put them together, one, two, three apples. No problem. I can do it from scratch every time. Not a problem. But very quickly numbers started to get a little bigger and I ran out of fingers.

So I was asked to add things together like 67 and 54 and my mind would just go blank. For whatever reason, I just couldn’t keep these numbers in my head. As soon as a new one popped in an old one would fall back out. I could maybe hold about three digits in my head at any one time. It’s sort of like I was writing on a chalk board with one hand and erasing with the other as I went. It made it impossible.

But I figured out that’s okay. That’s not a problem. What I can do is I'll just make sure I keep writing it down in the margins. As I go I'll add one column together, count it up on my fingers, carry the one, add the next column up, count it out on my fingers, and then and then and then. And it always worked. It wasn’t a problem. It was slow but it worked.

Until we got to multiplication which I far ran out of body parts to count. I couldn’t do that anymore. And I couldn’t do it in the margins. I couldn’t come up with six groups of eight in the margins or anything like that. I'd finally run up against the wall where I absolutely, just out of necessity, had to memorize 144 numbers. That’s 12 times 12, which I know now. 144 different combinations of numbers, which for a kid who can’t remember three digits is mind blowing.

But my parents wouldn’t give up on me. I would sit there after dinner and we’d sit there at the kitchen table and they do flashcards at me with all these multiplication questions on them. So they’d go, “What’s three times four”, “What’s two times eight”, “Seven times nine”. And I would do this over and over for months and months and months to the point which my younger sister, who is still learning to count, knew her multiplication tables better than I did.

But after months of that, finally, brute force ever, all of them were pounded into my head. I knew them, all except anything that multiplied to be 24. Six times four and three times eight were a mental block I could not get over for the life of me.

My parents would sit there and be like, “Okay, Craig, three times eight?” Nothing. Like, “Craig, three times eight is 24.”

“Okay.”

“Craig, what’s three times eight?” Nothing. “Craig, three times eight is 24.”

“Okay.”

“Say it with us, three times eight is 24. Three times eight is 24. Good. Craig, what’s three times eight?” Did not get it.

This is not an exaggeration by the way. This is exactly how it went.

But finally, after years and years and years, I finally got it in there, which is great. And what’s really crazy is that almost 20 years after sitting at my parents’ kitchen table failing these cards over and over and over again, I found myself sitting at a desk behind my computer working as a mechanical engineer. How did that happen?

And to be honest, I had not asked myself that question at all. I hadn’t even thought about that, what made that change, until I was sitting there at my job working as a mechanical engineer and I was taking some HR training at the time. It was about serving people with disabilities. One that said is that some people may suffer from learning disabilities such as dyslexia or dyscalculia.

I'd heard of dyslexia before, I’d never heard of dyscalculia before. So I went on Wikipedia and I looked it up and there was a list of symptoms, which is math learning disability.

Symptoms include difficulty reading time on analog clocks, difficulty with directions and orienting yourself in north forward directions, difficulty with face-name recognition, difficulty with math, basic math concepts such as addition, multiplication and mental arithmetic, as in difficulty with adding multiplication and mental arithmetic and, finally, may remember math concepts one day and forget them the next. Just like three times eight is 24, I can know one day and forget the next.

I sat there reading this list of symptoms and just my mind blown because all of a sudden, all of these quirky, individual childhood things weren’t that anymore. There was a list of symptoms that explained so much about my life. I sent this list to my dad and he was like, “Yup, that’s you.” Right?

And it’s weird because up until that point I hadn’t really thought about what had taken me from this kid that struggled with math so much to be someone who could become a mechanical engineer, a typically math-heavy field.

Then I started thinking about it and I realized nothing had actually changed. I was still that guy. You know what I mean? I wish I could sit here and tell you that there was suddenly a moment where math started making sense to me, where everything clicked and I understood it but that wouldn’t be true. To this day I struggle with remembering numbers.

When I copy out a phone number I do it two or three digits at a time because I can’t remember all of them at once. When I go to split a tab at the bar, it’s impossible especially when I've had a few drinks. And to this day I still feel as though three times eight and six times four, I know them but I feel like they live in a different part of my brain.

It’s like if anybody has ever been in a family where for some reason you keep that one item of food in a different part of the house than the kitchen, you're like, “We keep our beans in the basement.” “What?” That’s exactly what it is like. Every time I think about three times eight I feel myself going down those stairs to access that information. It’s still very hard.

And I still struggle with face-name recognition, I use GPS to get everywhere.

But then I realized what changed wasn’t me. It was math. As I progressed through school I realized that it became less and less about knowing numbers and became more and more about problem solving. Calculus and algebra were just like stories that I always used to read. It was you figured out where you were and you figured out logically where you need to go from there and then and then.

Compared to the other kids who’d always looked at a question and known the answers they never had to figure it out before. They got frustrated. They quit. Whereas for me this was the same as counting it out on my fingers, just keep going. The drudgery, the work of just solving it out.

And I realized that over the years all of these efforts I had gone in to solving the problem of me being bad at math had actually made me better at math problem solving. And they started letting me use calculators.

Thank you very much, guys.