April 2 marks World Autism Awareness Day, a time to recognize and deepen our understanding of autism spectrum disorder. Autism is a lifelong neurodevelopmental condition characterized by differences in social communication and repetitive behaviours, though it manifests uniquely in everyone. In Canada, an estimated 1 in 50 children and youth aged 1 to 17 have been diagnosed with autism.
To gain insight from lived experience, we spoke with Kiara, a third-year undergraduate student in UBC’s Neuroscience program (Behavioural & Cognitive stream). Kiara shared her perspective on autism, her academic interests and her journey in research.
Can you tell us a little about your experience with autism – how early were you diagnosed, and what was that journey like for you?
I was diagnosed with Autism Spectrum Disorder (ASD) according to the DSM-5 when I was 15 years old in Grade 10. The diagnosis was helpful in providing an operationalized framework for my parents and teachers to understand my behaviours and support my growth. It was also reassuring to find out that my experiences are not unique but shared among many other individuals. Given that our understanding of autism continues to evolve as research clarifies its nuances, I view my condition as dynamic and one that I continue to learn about in proportion to the extent that I reflect on my experiences. That is, autism is a journey that I am continually exploring.
Many autistic people have deep interests that can evolve over time or remain lifelong passions. What are some of your hyper-fixations?
I have many restricted interests that fluctuate approximately each year. The first of which was creative writing; I recall many nights of staying up past 1 AM writing novels about talking dogs or haunted dolls when I was in Grade 5. In contrast, I became engrossed in psychology when I was in Grade 11, which often led me to procrastinate on my homework to read the theories of any influential 20th century psychologist online. That interest eventually transformed into neuroscience when I was in Grade 12, characterized by sleepless nights and teaching anyone in my high school about LTP, saltatory conduction, or Wernicke’s area who cared to listen, which often happened to be my poor English and history teachers. One of my more recent interests in pedagogy has manifested itself most clearly in the responsibilities that I have undertaken this school year, including serving as a TA, developing curriculum for the Undergraduate Program in Neuroscience, and creating a Student Directed Seminar on neurophilosophy.
“However, the more interests that I accrue, the more I realize that it isn’t mythology, economics, or organic chemistry that I most enjoy, but rather the process of learning itself.”
Autism is often discussed in terms of diagnostic labels, but these labels can mean different things to different people. What are your thoughts on autism as a label?
Given that autism consists of a genetic component whose influences are pervasive, multidimensional, and difficult to pinpoint, my “autistic self” affects nearly every domain of my life including my personality, values, and interests such that the dichotomy between my “autistic self” and my “non-autistic self” should be collapsed into one: my being. Indeed, there is no single “autism gene”, but rather a collection of genes whose variations might translate to behaviours such as decreased social motivation, delayed speech development, and poor visual-motor integration, that collectively produce a phenotype that a psychologist can then identify and call “autism”.
Thus, any answer that I could provide to a question such as, “How do you personally identify with autism?” is really an answer to a different but related question of, “How do you identify…in general?”
In response to the latter question, I can at least say that I have been finding it pragmatically useful to view myself as the type of person who contains the potential to voluntarily overcome challenges and, in doing so, transform into the person that I most wish to become.
Out of all the topics to study, why neuroscience?
As I shared before, my interest in neuroscience initially emerged from an interest in psychology. I attribute the latter phenomenon to my desire to understand why people behaved in the way that they did, a question that plagued me throughout both middle school and high school. I found many common behaviours that students performed confusing, irrational, and even counterproductive to their purported aims, which led to my frustration and isolation. For example, I found it peculiar how many students failed to obey the school’s rules, refused to bluntly state what bothered them, seemed to care greatly about their popularity, or engaged in small talk about their personal matters. I wanted to figure out what people were up to. Now, having learned much more about psychology and neuroscience in the courses that I have taken at UBC as well as in my personal learning outside my classes, there is still much that I do not understand about human behaviour. However, I have at least been finding it overwhelmingly interesting and phenomenologically accurate to consider that there are some forms of knowledge that we cannot articulate but seem to understand implicitly through embodied action.
What is your directed studies project focused on, and how has your experience with research been?
Last summer, I volunteered at two UBC labs. The first was Dr. Jeremy Seamans‘ lab, located at the DMCBH. I worked with rats—mainly handling and training them on experiments such as a 3-tone Pavlovian conditioning task—to study drug addiction and the role of the anterior cingulate cortex (ACC) in mediating withdrawal symptoms. I continued to volunteer at the lab in Terms 1 and 2 until this month. The second is Jim Enns’ lab, located at the Douglas Kenny building. I ran undergraduate students on a computer-based pointing task, which assesses subliminal body language processing in the context of predicting others’ future actions. While I was initially involved in the lab through a volunteer position, I began a Directed Studies project in Term 2, which I am currently working on. For my project, I am comparing the performance of autistic and non-autistic individuals on the pointing task.
Are there any support systems or resources that have been particularly useful to you?
I am thankful to have had many support systems throughout my development. Namely, my family, friends, teachers, professors and clinicians have all provided immeasurable encouragement, wisdom and guidance. In addition to my relationships, philosophy has also been particularly useful in shaping my character. I am most fond of stoicism, existentialism, pragmatism, and phenomenology, which have collectively provided a robust framework that I currently use to interpret and navigate the world, including the expectations that I have set for myself in my role as a student. For example, when I experience an academic challenge, I seek to identify insufficiencies in the way that I have conducted myself that may have contributed to my circumstance to any degree, rather than attributing the source of the issue to that which I cannot control. Inevitably, I often make many errors and mistakes, and thus my list of “things that I would do differently” becomes exceedingly long with every, especially novel, experience that I have. By then allowing my reflections to inform my future actions, I hope to become all that I could possibly be, including the type of person who can bear that degree of responsibility and voluntarily confront challenges.
Kiara’s insights highlight the importance of listening to lived experiences and fostering a deeper understanding of autism. As we recognize Autism Awareness Day, let’s continue to learn, challenge misconceptions, and support inclusivity in our communities.
