In this week’s episode, both our storytellers share their experience with the autism spectrum. This episode is in honor of World Autism Awareness Day, April 2, which hopes to further people’s understanding and acceptance of autistic people.
Part 1: Neuroscientist B. Blair Braden is confused as to why her neighbour doesn’t pick up on any of her social cues.
B. Blair Braden received her doctorate in Behavioral Neuroscience, Psychology from Arizona State University (ASU). She completed her Neuroimaging/Neuropsychologoy Post-Doctoral Fellowship at Barrow Neurological Institute, St. Joseph's Hospital in Phoenix. She is an Assistant Professor of Speech and Hearing Science and Director of the Autism and Brain Aging Laboratory at ASU.
Part 2: For her entire life Behavioral Neuroscientist Susan Rapley doesn’t understand why she can’t fit in.
Susan has a PhD in Psychological Neuroscience, then applied it to community science education and engagement. Throw in a healthy interest in leadership for social change, mix over maternity leave, then pour into disability equity for the NZ public service. Susan is currently advising in the establishment of NZ's new Ministry of Disabled People. Storytelling turns out to be at the heart of it all.
Episode Transcript
Part 1
This guy again?
Here I am in the sweltering heat just trying to carry my groceries from the car into my girlfriend Candace's house in one load. September may be the time that the rest of the country is cooling off, but for us in Phoenix, the heat is still oppressive. And what's distracting me from my serious grocery-carrying mission is Candace's annoying neighbor Peter.
“Hey there,” he says as he starts marching over to the driveway to talk to us. We didn't ask him to come over but this is what Peter always did. It was like he sat in his window, waiting, watching for our car to pull in the driveway so he could come chat.
Candace was always very nice with him but I was suspicious of Peter's motives. He was a single, middle‑aged man who I thought just wanted to be real chummy with his 20-something female neighbors. I saw right through this misogynistic attempt to surround himself with pretty young girls and I wasn't having it. I was tight-lipped. I was brow furrowed and I gave him all the nonverbal cues I had that I did not want to talk with him.
Around this time, I was a new postdoc, so I was trying to walk that line between kind of still being a college student but also wanting to be a real adult. We had moved out of the college student neighborhoods, which was nice to leave the keg parties behind, into adult neighborhoods. That brought a whole new challenge, creepy middle-aged neighbors.
And Peter was just the worst. He knew so much about our lives. He always knew when we had had a party. He always knew who had visited us recently. He even knew that Candace's roommate had broken up with the guy she'd been seeing recently. How did he know all this stuff?
We joked that he had wiretapped the house. It was a joke but it kind of contributed to my uneasy feelings. So you can imagine my shock when Candace told me she had invited Peter to Thanksgiving dinner.
What? Thanksgiving was such a special day for us. It was when all of our former graduate student friends got together because we were still all too poor to travel home to our actual families. We rarely invited outsiders, let alone creepy neighbors.
“Fine,” I said, “but I'm keeping my eye on him.”
B. Blair Braden shares her story with an audience at sponsored show for Spectrum News at Centre Phi in Montreal, Canada in May 2019. Photo by Esther Gibbons.
So Thanksgiving Day rolls around and he shows up, pie in hand, annoyingly large grin on face. Came in just as he did many times to us in the driveway and asserted himself into conversation after conversation. I guess in this case what else was he supposed to do? He didn't really know anyone else.
But as I watched him, honestly, there wasn't much to see. He was really nice. He was really polite. He was very respectful. But I did notice something interesting. No matter what the conversation was, he always brought it back to the sporting events he attended.
Story after story after story of the Phoenix Suns, our football team, the Arizona Cardinals. We even have an ice hockey team in the desert, the Arizona Coyotes. He told stories about all of them. And our friends would humor his stories for a bit and then slowly drift into other conversations.
But, eventually, it was time to eat. We all sat in an outstretched table, about 15 former graduate students and the odd man out, Peter. We had a great meal. We ate. We drank. We laughed. Just like every Thanksgiving it was a lovely time to reflect our good fortune.
Not long after dinner, Peter thanked us profusely for having him. He said he typically has nowhere to go for Thanksgiving.
A sinking feeling set in. I think it was some pumpkin pie rumbling with some guilt. And it all came together at once, the social awkwardness, the lack of meaningful relationships, the insistence of talking about sporting events.
“Oh, my God. I think Peter may be on the spectrum,” I said to Candace later that night.
This irony was all too much because what I was doing in my new postdoc was a study with middle‑aged autistic men, and I was loving my new work. I got to take each participant out to lunch in between the MRI scan and the cognitive assessment, and just a time to get to know them better.
Because I was totally aware of the social communication differences, I was very patient. For example, I had recently gone out to lunch with Greg. He talked for longer than I wanted him to talk. I wanted a turn to talk, but I was patient and understanding. Sometimes he was louder than I felt comfortable with in the restaurant we were sitting in, but it was okay. Even through those differences, we found this very genuine camaraderie about how it's hard to grow up in small town southern America, and then lighter topics about, “What do you say? Soda or pop?” It's a divisive question.
So in this different scenario with Peter, I had completely missed the signs. I was embarrassed that I didn't see the connection to the men that I was getting to know through my research and also just shameful that I could have treated someone so poorly merely because he didn't meet my expectations of that social situation.
B. Blair Braden shares her story with an audience at sponsored show for Spectrum News at Centre Phi in Montreal, Canada in May 2019. Photo by Esther Gibbons.
Ultimately, I had to practice giving myself grace. I was talking with Candace, trying to figure all this out and realized I was scared. Something about Peter had scared me. I and many other young women I know have been treated poorly by middle-aged men. And being queer has absolutely intensified that mistreatment at times.
So we talked about our shared strategy of putting on social armor. When you meet someone that you're not really sure what their intentions are, you put a block up. You protect yourself. And I realized that Thanksgiving night how quick I was to do that when I met Peter rather than actually paying attention to how he treated me.
In reflecting on all of my lunches with the autistic men I was getting to know, I felt totally safe and comfortable. And I thought, “I bet Peter's a great guy too.”
So, from that day on, I met Peter with smiles and eye contact and lots of questions to get to know him better. What a great guy I'd been missing out on. When he came over to our driveway then, we could chat and laugh and I could hear about his really cool sporting events that he went to. He would help us carry the groceries in from the car.
Eventually, Candace moved out of that house and in with me to downtown Phoenix. But a couple years later, we visited our old college town Tempe. We went to the local Oktoberfest, grabbed a beer and a bratwurst, but quickly diverted away from the crowds to a nice bench overlooking the lake.
And what do you know. Someone else found refuge in that bench. It was Peter. We were so happy to see each other. He was as kind as ever and I was able to mirror that kindness back to him along with Candace. We caught up over our German delights and eventually said our goodbyes.
I was sad as I walked away from Peter that day because I didn't know when I would see him again. Turns out Peter, Greg and every autistic person I've ever met has taught me so much about how to let go of fear and embrace acceptance. Thank you.
Part 2
A strange but true fact about me, my first word was ‘why’. Most kids, neurodevelopmentally speaking, hold off until they're about two or three on the incessant questions. Clearly, I was not most kids because I got there around my first birthday. I can only imagine what a great joy it must have been for my parents to have me both learning to walk and questioning everything.
I truly believe that our first words can tell us a great deal about ourselves. From the brain's perspective, they create the center of the neural networks that will propagate as our brain grows and develops.
From my first why, my curiosity only grew as I did. By the age of three, I was enamored with biology, first, animal, and then human.
Susan Rapley shares her story with an audience at Fringe Bar in New Zealand in November 2019 . Photo by Gerry Le Roux.
When we get to the age of five, we start school. And with school, we're exposed to the start of social relationships. This is where my why's started becoming self-exploratory and would eventually lead me to psychology.
The first I remember experiencing isolation from a social relationship, I was maybe six. I had one friend and I remember standing in the playground one day looking for her, unable to find her. Until, suddenly, she came running at me from one of the classrooms down the other end and stopped clear in front of me and said, “I don't want to play with you anymore. You're too weird. None of my other friends want you to play with us either. They think you're too weird too,” and then just took off back in the other direction.
I was just standing there shocked, confused and remember thinking, “But we play together every day. So what am I supposed to do now?”
That was only the first time something like that happened and, each time, the same questions started occurring. Why don't other kids like me? Why do they run away from me? Did I do something wrong? Will I ever have other friends to run away to? What do they mean by calling me weird? And for that matter, aren't I perfectly normal?’
The short answer to that one, folks, is no, I was not and am not still perfectly normal.
Some of these not-so-normal things became really challenging when I was about eight. I tested well but couldn't perform in the classroom, especially if I was called on to speak up or had to think of an answer to a question really quickly.
I was sent for a whole bunch of assessments and the verdict was, “Oh, it's not a problem. She's just bright,” like Mensa bright. “We've got this issue, though, with her reading comprehension being way ahead of her verbal comprehension.”
The solution was to have me reading more challenging books and put me in a bunch of extracurricular activities, hoping that I'd make some friends there as well. And that worked for a little while.
Then I got to high school. And at high school, too talented and too bright is not really good. Social expectations change on a daily basis. One week, someone's bullying you mercilessly and then they want your help with history so they're your best friend.
Continuing on to university, I thought I'd finally crack the conundrums, maybe find somewhere I fit in or a group that I could belong to instead of just being tolerated. If you've been to university, though, you know it's basically just high school on repeat with alcohol.
At the end of university, I came out with a degree in psychology and went on to specialize in human development and neuroscience. Doing my PhD almost killed me, literally. For the final 18 months, I kept making myself promises that if I just survived, got through it and finished it, I'd finally find the time to get some help and find out what was wrong with me. Because, at some point, you have to accept that it all comes back to me and a mismatch between what people thought of me from the outside and what I thought I was like from the inside.
This kind of treatment of me reached its peak during my PhD. I assumed I was going out into the world trying to be kind and decent and polite and flawed, yes, but not an awful human being. Unfortunately, the feedback I got from pretty much everyone else reinforced that I was in fact an awful human being.
So the question became why am I wrong about myself? Why can't I fit in anywhere? And for that matter, why am I such a paradox? Why can I teach myself advanced statistics but I can't manage to shower consistently or remember to brush my teeth and put on deodorant every morning? Why am I so obsessed with being organized but I lose something on a daily basis? Previous examples include school uniforms, chocolate and a favorite book. Thus, I am still cut off about at 34 years old and it happened when I was seven.
Luckily, I have the proper education to tell me exactly what I need in order to answer these questions, a clinical psychologist. Sort of kind of luckily, my recent extreme psychological distress also qualifies me to see one. Hurray. It's not what I expected.
For the first two‑hour session, we just talk, like chit chat small talk and it is horrendous. I hate it. I know from my training that this is called rapport building and the therapist is trying to get to know me as a person so that they can exclude any of my personality traits from a diagnostic criteria.
Susan Rapley shares her story with an audience at Fringe Bar in New Zealand in November 2019 . Photo by Gerry Le Roux.
By the end of the first session, I can't follow the conversation. I'm lost in my own head. And so I just tap into my other training in active listening or what I know active listening is supposed to look like from the outside. That means I'm pretending.
By the end of six sessions, I have the answer. And I tell the psychologist as much, which doesn't go down well. She tells me that thing I've heard before so many times, that I'm wrong about me. She suggests I go and read a book. I will find, by reading said book, that my diagnosis that I've given myself doesn't match with the experience of others.
So I go and read a book. Actually, I download 13 book samples on my Kindle, read all of them before choosing one that I really like. Read that straight through, pausing only to eat dinner and then have a somewhat decent night's sleep before a job interview the next day.
I finished the book in the car on the way to the job interview. At that point, I know. But I'm a scientist. I can't just know these things. I need observations and data. So I step outside of myself and I watch.
I am so awkward. I am dressed completely inappropriately for this job interview. It is for a short‑term lab technician position which, to most people, would suggest smart casual. I've come in in business formal wear which, to be fair to me, is what the internet suggested. And the lesson here is that you shouldn't trust everything you read on the internet.
I know I'm supposed to try and chat to the people at the job. About what? I don't know. This is the problem. I can't think of what to talk to them about and I'm so anxious that I can't stop moving. I'm fidgeting and my leg is just going like a dog scratching itself.
The interviewers come out and we shake hands. Typically, you're supposed to make eye contact when you shake hands, but I contact somewhere around the tip of their noses. There's two of them and I've never been interviewed by two people before.
We go into the room and I'm just thinking to myself, how should I sit? What sort of body language would convey a sense of relaxed confidence? For that matter, there's two of them. Where do I put this expertly-faked eye contact?
That's when I know, 100% certainty, no further observations necessary. And in that moment, everything changes and yet everything is exactly the same as it's always been, only I've closed a loop and I finally have language available.
I leave the interview knowing that I've completely tanked it, but somehow also feeling completely elated. We get in the car to drive home and I turn to my partner and just announce, “Well, I'm autistic.”
And he turns to me and says, “How do you feel about that?”
For the first time in my life I can finally say that I feel amazing.