Autism Interview #174: Suzanna Chen on Autistic Identity and Inclusion

Suzanna is a graduating high school senior from Vancouver, Canada and content creator for Destester Magazine. She enjoys producing literary and artistic works for causes she is passionate about—social justice and mental health advocacy. Some of her hobbies include music, visual arts, and writing of all genres. This week she shared her experiences as a recently-diagnosed teenager, insights into inclusion both in the school and public settings, as well as authentic endeavors of autistic self-advocacy.

What factors have been the most foundational to helping you develop a positive autistic identity?

Similar to the general public, my first impression of autism consisted of the words “special needs,” “disability,” and “disease.” (Looking back, I only approve of the term “disability.”) It didn’t help that my native tongue—Mandarin Chinese—depicts autism using three characters that directly translate to “self,” “close,” and “disease.” (自闭症)

Also, I grew up hearing this story: a doctor had suggested autism as the cause of my social ineptitude when I was in kindergarten, only to be disregarded by my mom because I could speak and was relatively “normal.” While it would definitely be nice to not have gone through the intense turmoil of self-doubt and -deprecation that sent me into a hospital for three months, I don’t blame my family a single bit for dismissing the idea of me being autistic. I couldn’t have expected better from people immersed in a culture of deep-rooted stigmatization towards autism and neurodiversity. 

My own idea of autism started to change when I stumbled upon a TEDx talk called “Invisible Diversity: A Story Of Undiagnosed Autism” by Carrie Beckwith-Fellows, a freelance writer and vlogger from the UK. Everything about Ms. Beckwith-Fellows’ experience resonated with me. It had opened a window that allowed me to see autism, and specifically autism in females, in a new light—a light that illuminated my lost identity. 

However, as I dived into autism in my usual “black hole style” research, I became aware of the polarity of our society’s understanding of autism. Being newly diagnosed, I was caught in the dilemma of whether to see myself as a burden to society or merely a part of human diversity. (Of course, as an individual with a fundamental level of self-respect, I was inclined to believe the latter.)      

For my current firm acceptance of my autistic identity and the neurodiversity paradigm, I have to thank autistic advocates—anywhere from ASAN to those who share occasional posts on social media—for courageously countering society’s ongoing stigmatization of autism. They have inspired me to serve a similar role in helping others take pride in being autistic.

Additionally, while I was half-kidding when I mentioned self-respect, I really think it is essential for autistic individuals to have faith that they are not what many paint autism to be—a “patient,” “victim of an “epidemic,” “an unsolvable puzzle,” etc. 

What inclusion strategies/practices/structures does your current high school have in place that you find particularly effective?

As I had not received my diagnosis nor any autism-specific support until my last year in high school, I don’t know if I am quite qualified to speak about this topic from my personal experiences. However, I do want to note that I think my school is quite progressive in incorporating neurodiverse students within the general student body. You can see autistic students mingling with their neurotypical peers in many classes, which I think is crucial in preparing both parties for interaction and acceptance when entering the greater society. 

Another aspect I especially appreciate about my school is that they have involved me in drafting my own IEP (Individualized Education Plan) rather than only discussing with my parents and mental health team. It made me feel like a respected individual with autonomy in determining my own path—an uncommon experience for autistic people in many sectors of society.

Where is there room for growth (with regard to the previous question)?

While I am, overall, quite satisfied with my school’s support for myself (being late-diagnosed) and other autistic students, there is definitely room for growth in promoting a better understanding of autism as merely a beautiful difference.

When I first received my diagnosis, many autistic self-advocates who promoted neurodiversity as a normalized aspect of society gave me the false illusion that I will be accepted readily by everyone without batting an eye. 

Thinking back, it seems almost ridiculous that I was hoping for this. 

I told my teachers and “came out” as autistic entirely on social media with the utter joy of finally being able to live as who I am, but the reaction I received was a cold, hard slap of reality on my face. The teachers who ignored my emails, friends who wouldn’t meet me in the eye, and people who told me that they were “sorry for me”…these hurt.

However, I am also thankful for this torturous experience as they inspired an advocacy project I initiated with the team at Detester Magazine to improve autistic accessibility in schools.

The official description of our project is as follows:

“Inspired by Autism Awareness/Acceptance Month 2021, our team (at Detester Magazine) is inspired to pursue an endeavour towards making schools more inclusive for autistic students. As we recognize that the current level of accessibility of schools for autistic students is not always ideal—whether it is the lack of educational resources or an exclusive social environment—we want to advocate for change by obtaining testimonies from autistic students about school experiences and using them to create a petition demanding change from school board officials. 

However, while we wholly believe in this project’s potential, we recognize our limited influence in the autistic community. So, we will not launch the petition on our own or lead the petition, but rather serve as an affiliate and provide our future autism advocacy partner with any assistance within our capabilities to help execute the campaign.”

We are currently collecting anonymous testimonies from autistic students worldwide and reaching out to autistic self-advocacy organizations. If you are interested in contributing a testimony, here is our anonymous survey. We also welcome any suggestions and collaboration inquiries to be sent to partnerships@detester.org. 

Can you comment on inclusive experiences outside of school in the public setting? What places are doing inclusion well? Another way of thinking about this might be what places or under what circumstances do you feel the most comfortable, free, and happy?

It is hard to think of situations memorable for being comfortable on top of my head, as most public spaces are either horribly over- or under-stimulating. I also automatically go into “masking mode” as soon as I leave home, which means that I am never quite “free” anywhere I go. However, I do tend to enjoy under-stimulating situations—such as a library—better because I can easily find comfort in minor gestures of stimming, whereas I often have no control over the external stimuli in sensory-overwhelming situations. 

What makes you feel uncomfortable, anxious, or fearful in a public setting?

As mentioned above, public settings are often uncomfortable for autistic people due to an excess or lack of sensory information. To put it into context, a supermarket with overplayed pop songs blasting on the radio and children screaming for their parents to buy them candy would be an epitome of over-stimulation, while a library with hardly a soul inside would be under-stimulating. 

Although, despite wishing and urging for public spaces to better accommodate autistic sensory needs, I acknowledge that it is partially my responsibility to help myself tolerate these situations.

I think this principle applies to my advocacy as well: while I call for better accessibility, I cannot blindly expect the vast majority of our society to suddenly change in accordance with my needs. While it is undoubtedly unfair that we have to make ourselves fit into neurotypical molds in order to function in the world, autistic self-advocacy is the process of slowly pushing the boundaries so that future generations can enjoy increasing authenticity.

Aside from the sensory aspect, any public setting that requires interpersonal interactions makes me extremely uncomfortable as someone with social anxiety. I think the fear of social situations is definitely not uncommon among autistic people as our society is often not tolerant of our occasional social mistakes. 

What social justice issues are you most passionate about and why?

I’ve read articles suggesting that autistic people have an innately stronger sense of justice than neurotypicals, and I think it is really true for me. 

As a staff writer at the youth-led advocacy publication of Detester Magazine, I have published more than 12 articles about various social and racial justice issues—including racial disparities in mental health services and the Missing and Murdered Indigenous Women and Girls crisis (MMIWG). 

It is challenging to choose one social justice issue because my identity is intersectionally marginalized, but my identification as autistic has increasingly prompted me to shift towards advocating for disability and autistic rights. 

My first article about this topic, “Recognizing Disability: The Forgotten Diversity,” has allowed me (and hopefully my readers as well) to truly acknowledge how much ableism is overlooked and normalized. Following the overwhelming response to this article, I published another, “Disability in Media: Sia’s Music and the Labels of Libels,” with a more specific focus on autism misrepresentation. Additionally, I try to use our publishing platform to amplify the voices of other disability and autistic advocates through interviews. As of now, my interviewees include Tiffany Yu (founder of the non-profit “Diversability“), Wendy Lu (disabled journalist), and Amythest Schaber (host of the YouTube series “Ask an Autistic“). An interview series I did with autistic advocates for Autism Awareness/Acceptance Month is also available on Detester’s website. 

I see myself advocating predominantly for those standing at the intersection of disability and other marginalized identities for the near future.

How have you learned to self-advocate? What advice do you have for other teenagers who want to learn self-advocacy skills that will help them throughout high school, college, or adulthood?

My self-advocacy journey would not be possible without the comprehensive resources provided by more experienced self-advocates online. However, as the discriminatory “pathology paradigm” of autism is deeply ingrained in our society, a critical warning I would give to my autistic peers would be to carefully select sources when searching for self-advocacy information. 

There were times immediately after my diagnosis that I had wanted to donate to research towards “curing autism” because they were just packaged with such benevolence that blinded me from their mission to erase my identity. To help those stuck in a similar confusion, I have made two resource guides under Detester Magazine: one with a comprehensive list of authentic resources and the other on how to distinguish true advocacy organizations from autism “charities.”

I also want to note that my advocacy started with the belief that I deserve better than the pitying glances of misunderstanding that came with my diagnosis—something I hope all of the autistic community have faith in. 

Spread the word. Share this post!

Leave Comment

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.