Profiles in Regeneration: Ella, 16, Canada
My hope is that this new accessible way of diagnosing autism contributes to creating a world where there is no assumed default and differences are understood and valued.
There are many issues with the current way neurodivergent people are diagnosed and treated.
Late or incorrect diagnoses are common for many neurodivergent people, specifically for girls/women and people of color. Especially with autism, where girls are known to “mirror” easier and present differently than boys on the spectrum, diagnoses can take years longer than average. And once diagnoses do occur, people with autism are treated as if they need to be “cured.”
Ella Boisvert-Veno, who self-diagnosed through her own research before being formally diagnosed, plans on helping people do the same. She wants to create an app that puts diagnoses in the hands of individuals and families as well as giving them access to resources to help them succeed and not just cope with a world built to exclude them.
Boisvert-Veno knows that she and other people with autism have just as much potential to live great lives as any neurotypical person… they just need to be given the chance.
Regenerative Futures: How are you feeling right now?
Ella Boisvert-Veno: I’m feeling apprehensive about climate change, the US election, the global pandemic, anti-vaxxers, and so much more. But I’m feeling hopeful due to the growing global consciousness and action evidenced by worldwide protests and the changes I see in my own city in terms of increased awareness of prejudice and the climate crisis.
RF: What’s a secret your search history can tell us about you?
EBV: That I have a googolplex of seemingly random yet highly specific interests.
RF: What are you reading/learning about at the moment?
EBV: I’m researching environmental action plans, following disability acceptance advocates, and reading New Suns, a collection of speculative fiction by authors of color.
RF: Who is your favorite human and why?
EBV: My mom is my absolute favorite human. Beyond it being because she is my mother, it is because she is an outstanding person. She is empathetic and kind. Intelligent and curious. She has always inspired me to be better and consider all angles and possibilities. Her hard work as a parent of four, a volunteer in our community, and as a future teacher has shown me that what matters most is being dedicated and passionate about what you do and why you’re doing it. She has never held me back as most others have for my abstract, out-of-the-box thinking, but instead helped me believe that it is my greatest strength.
RF: Which key moment inspired you to start your project?
EBV: The idea which has blossomed into a design for an easier way to diagnose autism was initially a simple PowerPoint presentation I created aimed at dispelling the misinformation and misunderstanding surrounding me after I received my own diagnosis. Before I was formally diagnosed, I had done a lot of research and online screeners, so it wasn’t exactly a surprise. But reading up on the diagnostic criteria, I realized that I would never have qualified for a diagnosis before the age of 11 or 12. The point at which living in a society that wasn’t designed for people like me had managed to create enough serious trauma that it became apparent to those around me that something was “wrong.” The way the formal diagnosis was done wasn’t very helpful in the end. In fact, the ideologies behind it were inherently harmful. It focused on the idea that there is a human default and those that sway from it are abnormal and flawed. I was convinced that there had to be a better way than this, something that would be less harmful, but serve the same purpose of definitively identifying people as autistic, providing them with vital information about themselves and access to supports. I was simultaneously trying to figure out the kind of information that could be given to people post-diagnosis to improve acceptance while also looking for a better way of doing the whole diagnostic process. While learning everything I could about the current diagnostic systems, I worked on my PowerPoint.
I was online one day reading about new scientific research on autism and found an article, and then a few more, about the research being done on facial scanning in autistic infants. I found similar studies done with different age groups. These studies stood out to me because unlike most scientific research, they didn’t speak of curing or modifying this behavior. A few days later, I came across an article about eye-tracking technology making video gaming more accessible and the two things just clicked together. Here is a way that autism can be detected easily without focusing on how someone is different than “normal” in a negative way, that isn’t subjective like the tests I went through. Here is this technology revolutionizing a different industry, but it tracks the movements involved in facial scanning. I was running through the idea, trying to figure out how it could be done, but sure that this was the way of making diagnosis something accessible to everyone.
What really spurred me on was an article in a magazine talking about the search for a “cure” for autism. The researchers were studying the brain development of infants deemed to be at a high-risk of autism due to having a previously diagnosed sibling. Children who are flagged as “abnormally developing” will be given an intensive and barbaric treatment of experimental medications and harmful “therapies” aimed at fundamentally changing who they are — for all intents and purposes killing the person they were born to be. The “abnormality” that they detected to classify an infant as autistic is that their brains grow at 10 times the rate of a neurotypical child. This means that their neural connections are being formed 10 times faster. Instead of taking this and realizing that clearly, the research needed is not figuring out how to slow this down — in a practically literal sense clipping our wings — but rather, what the different developmental needs an autistic infant has. Because the facial scanning test is accurate from 6 months on, if further research on the developmental needs of autistic infants was conducted this could be a complete game-changer.
If so much of the world wasn’t so eager to deem those different as less or broken then the results of that preliminary study could have fueled a new, necessary wave of research into what autistic people need to support our development. After all, if our brains are developing so much faster in terms of making those connections, the developmental needs must be different. Until we are diagnosed — typically between the ages of 2–8 but often not until adulthood — we are surrounded by people that don’t know that or understand what’s happening, which is going to be consistently traumatizing. My hope is that this new accessible way of diagnosing autism contributes to creating a world where there is no assumed default and differences are understood and valued.
RF: In two years' time, what would success with your project look like?
EBV: In two years’ time, success on this project would look like the app being launched and beginning to be made a widely available and commonly used diagnostic and educational tool. But, more than that, it would look like social change toward more understanding and acceptance of neurodivergent people. Nearly one in 88 children have been identified as autistic as of 2012. Currently, only 14.3% of autistic adults are employed. There are major disparities between both the median age and frequency of diagnosis of assigned female at birth (AFAB) and assigned male at birth (AMAB) and white children and children of color. These gaps are caused by the inequalities of the current diagnostic process, such as a lack of access, discrimination on the basis of sex and race, would be closing. The app would be combatting the rampant misinformation out there now. The work wouldn’t end here. Research on potential cultural differences in facial scanning would be ongoing with the prospect of a global launch if proven suitable.
RF: If you could focus a large percentage of government funding on one industry or project for the next five to ten years, which you choose and why?
EBV: I would focus the majority of funding on enacting innovative solutions to the climate crisis and dismantling the industries and systems that fuel it. Taking decisive action in the next 5–10 years is critical to prevent further irreparable harm. This would involve financing sustainable, equitable alternatives and addressing the systemic inequities that climate change has exacerbated. Many of the solutions are already out there, we have feasible alternatives to fossil fuels and examples of sustainable cultural practices. We have diverse voices informing the movement. They need to be prioritized. This is an opportunity to change the way things are done, to face a problem as a united planet. We need to act now before it’s too late.
RF: What are the best and worst things about the education system in your country?
EBV: I’m Canadian. In Canada, we don’t have a single federal education system. Each province and territory (how the country is geopolitically divided) is responsible for implementing its own. My province (New Brunswick) follows an inclusion model, meaning all students are included at the same schools regardless of neurotype, disability, etc. This is both the best and worst thing about education here. In theory, including everyone should create acceptance and appreciation of differences. However, in practice, my province’s model fosters an environment of “othering.” This is changing, people are working internally and externally to reimagine what inclusion looks like in New Brunswick. So, despite the fact that I wasn’t personally able to find a way to make the school system here work for me, I’m optimistic that the necessary changes have been set in motion so that it will work for people like me in the future.
RF: Do you have a message for anyone your age living in the year 2060?
EBV: My message for a person my age, forty years from now, is that things can and should keep changing. Like the adage, just because it isn’t broken doesn’t mean it can’t be fixed. I hope that this message is going to a person that doesn’t have the same obstacles and fights. I hope that things have changed significantly, that the world is a far more equitable, sustainable, inclusive place for them than it is for me in 2020.
RF: What inspires or frightens you most about the future?
EBV: I am most inspired by the possibility of change and progress. I envision a world that comes together to combat climate change, dismantle the legacy of colonialism, and create accessible, equitable futures for everyone. What frightens me is the possibility that these changes don’t happen, but I am confident that my generation needs change enough to make it happen.
Ella Boisvert-Veno is a Regenerative List Finalist.