This article was co-written by guest writers Samuel Vega and Leah Reinardy.
April is Autism Acceptance Month, and while there is a lot of awareness surrounding Autism, there is also a lot of misinformation online and in social media campaigns. Colleges will need to accommodate a growing neurodiverse population; 1 in 8 people are neurodiverse and 1 in 54 children are born with Autism (Harvard Business Review).
The two of us met through the Phelps Scholars Program, but neither of us had discussed or publicly disclosed our ASD until recently. As two Autistic students on Hope’s campus, we wanted to take the time to answer questions that we get asked (or wish we would get asked more often) about life as an Autistic college student.
Samuel Vega (‘21) is a Creative Writing major and Spanish minor from Holland, MI. He was diagnosed with Asperger’s Syndrome at the age of 5.
Leah Reinardy (‘23) is a Music and Business double major from Zeeland, MI. She was diagnosed with Level One ASD at the age of 20.
What was the diagnosis process like for you?
-Sam: The funny thing is that the process came in two parts. From 1-4 years old, my parents began taking note of a few quirks I exhibited. Hardly hugging anybody, freaking out at sudden loud noises, even being ghastly afraid of shirts that you pull over your head. At five years old, they noticed that I played around children but never with them and that it took a long time until I could even properly hold a pencil. My parents officially found out through a final diagnosis letter from a child psychologist. They noticed that my behavior resulted in explaining certain aspects of my father and grandfather’s behavior. It wasn’t until 7th grade that my parents officially told me about my condition, and that was one of the few times in my life where I’ve ever been genuinely livid about anything. Now I knew why talking to people was so difficult, why it took incredible willpower to focus on anything outside of my interests, and why there was some sad truth to being called “odd.” It was indeed frustrating to know that now my problems had a name, but I’ll never forget how my parents reassured me that Autism is not a disease and that they were there to “do life” with me.
-Leah: I was first tested in middle school, but not for any specific psychological condition. While my initial diagnoses targeted symptoms, I realized that they didn’t target the neurological root of my difficulties. I went for a second round of testing in 2019 but still felt like I was misdiagnosed due to my age and gender. A year later, I went through a third round of testing and received my official Autism diagnosis. It was a huge relief to get my diagnosis – finally, I had some answers for what I was experiencing. However, I still wonder frequently how much pain could have been avoided if I had received a diagnosis and support earlier. We need to remember that the majority of medical and psychiatric diagnostic models are created from the white male perspective. The majority of clinicians and participants in the research studies of the past have been white males. Only in the past five years have studies been conducted on women and Autism, and the conversation on race and Autism is barely getting started. This has made it harder for women and the BIPOC Autistic community to receive an official diagnosis. Many Autistic women struggle to get an official diagnosis because insurance won’t cover diagnostic testing after age 18 and they can’t afford to pay thousands of dollars for testing.
How do you disclose that you’re Autistic? Who have you previously disclosed to?
-Sam: Honestly, this feels like such a big deal. Outside of Leah and my family, I’ve only disclosed to about four other people. You know, I used to have a tactic of not saying anything until someone asked politely, and for a long time, that tactic worked. It felt bizarrely clever because then people would get to know me for me, and not for being “That Autistic Kid.” But sometimes disclosure does backfire, and people might suddenly view you as a weaker person, so make sure that you disclose to people you genuinely trust because of how crucial it is to practice a bit of discernment before revealing something so vulnerable. When people often asked me, “What’s your deal?” or “Why are you so quiet?” It was often easier to tell them “I’m just tired” or “I just think a lot” rather than take the time to explain Autism and all of its complexities. I hope to adopt and promote a philosophy that Leah once mentioned: “When you see me, I don’t want the first thing you think of to be ‘Autism’, but when you read about Autism, I want you to think of me”.
-Leah: It’s true, I did say that the first time Sam and I grabbed coffee. I used to be ashamed of my diagnoses, Autism included. There’s so much stigma that comes with the word “autism”. If I’m not comfortable disclosing, I’ll say “I have a neurological condition that makes it hard for me to…” when describing my difficulties. Over the years I have learned to use disclosure as a way to challenge stereotypes about disability. This spring I have become incredibly transparent about living with Autism, and I hope this propels local disability rights movements. The concept of disclosure is ridiculous in the first place; the term “disclosure” implies shame. I dream of a society inclusive enough that future generations won’t even have to worry about disclosure and its accompanying shame. Autism is not a disease. Autistic people are not burdens to society.
How does your Autism affect you in your daily life?
-Leah: Socially, I have learned to “mask” (mimic social norms) but it drains my social battery quicker than the average person’s. Eye contact, vocal inflection, and small talk do not come easily to me. In large groups, I feel like I’m in a fishbowl; I’m physically present in the room, but mentally I’m separated from others and everything blurs together. Bright lights and loud, unexpected sounds are distressing for me. I have difficulty visually and aurally processing the world around me at normal speeds. I live in a constant state of fight-or-flight. Occupational therapy has taught me to temporarily deactivate it using movement/sensory input. Since I was 6, I’ve been dealing with anxiety and depression, but wouldn’t you be depressed if you were living in a world that didn’t understand you? When I get extremely stressed, I experience meltdowns (visible mental breakdowns) and shutdowns (episodes in which I stop communicating and seem very “zoned out”).
-Sam: While Leah and I both can relate to navigating things such as “masking”, eye contact, anxiety, depression, and shutdowns, it’s been a bit more of a subtle journey for me. I might need to hear instructions multiple times to understand them. I have a hard time interpreting just how sincere a person’s facial expressions are meant to be perceived, yet it’s ironically easy for me to tell when someone might be holding back how they truly feel. With being diagnosed at an early age and having the privilege of all this time to practice adapting to a variety of social situations, it often feels confusing to distinguish whether a personal challenge directly ties with Autism or whether it could simply fall into the category of a “life lesson” or a “growing pain”.
Who/what resources have helped you over the years?
-Leah: Honestly, without my friends in the music department, professors who have taken the time to mentor me, and the residential support of the Phelps Scholars Program, I probably would have dropped out of college. I am notoriously bad at giving myself grace. My support system has modeled how to give me grace through difficult times, and I couldn’t succeed without them. Meeting up with Sam and other young adults on the spectrum has been incredibly validating. For the first time in my life, I get to interact with individuals who truly do “get it”. This newfound community has really inspired me in my activism efforts. I’ve also been in therapy for the past 13 years. I currently go to therapy 3 times a week; it’s a combination of talk therapy, occupational therapy, and physical therapy. It’s the primary way I am held accountable for my recovery and personal growth. I believe society needs to normalize therapy more than it does – it’s okay to struggle, and it’s okay to seek help.
-Sam: While this might sound like a complete blanket statement, I’m thankful for anyone in my life who had the directness and genuine sincerity to say a version of “I believe in you.” The most important resource to have is the realization that support is possible. The fact that I have a therapist who has been with me for five years is a blessing in and of itself. There’s a series of comic books called “Introvert Doodles” by Maureen “Marzi” Wilson. She understands that classic feeling of how awkward social integration can be for people, and her humor is just so relatable. Also, the book “Quiet” by Susan Cain is a prime example of how there is nothing wrong with inherently being a quiet person. Even though I’ve only known her for a little while, I’m incredibly grateful for Leah’s friendship and insights. She has already taught me so much about self-advocating, recognizing, and standing up for my own needs, even when I might not always know how to define those needs.
How does Autism impact your creative process?
-Leah: My primary interest is music. Music allows me to express myself, overcome my social phobia, and connect with neurotypical people. I experience alexithymia (inability to describe/identify emotions), which makes it hard for me to listen to a piece and connect with it emotionally in the same way a neurotypical would. In music classes, I’ll often provide a vastly different emotional interpretation in comparison to my peers and professors. My Autism enables me to continually question the world around me. I love to write poetry, record podcasts, and compose music that challenges cultural norms. I see creativity as my biggest asset in creating societal change.
-Sam: I also believe that creativity is my biggest asset for inspiring change. Autism has lent itself to enhancing my curiosity. I can also relate to finding some pleasure in questioning the world around me (especially with personal fascinations in studying other cultures and world mythologies). My passion for creative writing allows me to release and communicate much deeper thoughts, ideas, and emotions that would otherwise take too much time or emotional exertion to explain to the average neurotypical person fully. Even if many might view it as a struggle, I have often been able to harness the tendency of overthinking and turn it into the skills of thinking thoroughly and critically.
How can Hope be a more inclusive place for the Autistic community?
-Leah: As neurotypical individuals, understand that you will never fully understand the Autistic experience. Amplify and believe Autistic voices. I have had to fight for accommodations in some classes even though I’ve had them officially approved by DAR. Lots of the COVID accommodations that have been put in place have made aspects of college life more accessible to disabled students. Remote class options, to-go meal boxes, recorded lectures, and a staff committee that checks in on students recovering from illness/hospitalization are all accommodations that need to stay long-term if Hope truly wants to become a more inclusive and accessible school. Professors: Do not put students, especially ND students on the spot. We can and will contribute but will do so when we’re ready. If a student discloses to you, it means they really do trust you – it is often a terrifying conversation to have. Trust and validate them. You’d be surprised how many times I’ve been told “oh, you don’t need to worry about that because you’re so high-functioning”. (Functioning labels are always harmful!) Autistic people are generally self-aware. Figure out how to help us build on our strengths and implement the changes/accommodations that relate to our concerns.
-Sam: On a broader scale, I hope people understand that any attempt to explain an Autistic perspective does not automatically qualify as an excuse to continue “unusual” behavior. Just because a student hesitates to participate in class shouldn’t automatically qualify them as rude. Just because a friend doesn’t respond well to “dropping hints” doesn’t immediately qualify them as uncaring or insensitive to needs. Because ND people often take things at face value, we occasionally need more direct requests to accomplish a task. Before writing off someone as rude, ask yourself if maybe they’re nervous. Before assuming that someone “should have” understood you, ask yourself how you can balance being direct with showing compassion for a different way of thinking.
What stereotypes about Autism do you want to challenge?
-Leah: First of all, Autism has no look. Perhaps some stereotypical traits emerge at times, but this is usually when I’m having a rough day. The statement “you don’t look Autistic” is invalidating. I have had over a decade of therapy and put in so much work to be able to communicate with neurotypicals. When others say this statement, it tells me that they expect me to continue masking* to the level I have been(which is exhausting). Masking isn’t just “code-switching” for Autistic people; it is often the only way we are safe and taken seriously in society. I put in so much work learning how to communicate with neurotypicals. To me, “you don’t look Autistic” implies that a neurotypical person isn’t likely to meet me halfway in terms of communication methods and styles. Also, be careful where you do your research. Autism Speaks, arguably the largest Autism nonprofit is seen as a hate group by the majority of the Autistic community. The puzzle piece is widely rejected because of its association with this organization. I won’t get into detail on this, but if you’re curious, just Google “Autism Speaks is bad” and you’ll find everything you need to know. Support Autistic-led organizations such as ASAN, AWN, and Neuroclastic instead.
-Sam: I would say that Autism is a unique detail, not an entire identity. There is a reason why it’s called “The Spectrum”: it can manifest itself in such a variety of behaviors. Having Autism is an incredibly individualized experience. We are not all detached geniuses like Sheldon Cooper from the TV show“The Big Bang Theory.” We have a wide range of personalities, just like neurotypical people do, but it may take us longer to understand or process these complexities. The worst myth I hear is that Autistic people are entirely incapable of empathy. While the average person might express empathy through more obvious body language or by saying “I’m sorry,” an Autistic person might express this by proposing a solution or recounting a shared experience. In many ways, while Austitic people might not have a concrete emotional response for every situation, they can almost feel too much empathy and spend much of their lives learning how to filter that empathy into a way that’s easier for neurotypicals to understand. It’s not that we don’t know how to validate feelings, but it’s more about how the process of validating and discerning other’s feelings is one of many life skills that take us longer to learn than others.
What’s next for you? What do you dream of doing in the future?
-Leah: In addition to my musical endeavors, I feel that I am called to advocate for neurodiverse employees as an accessibility consultant. The fields of organizational behavior and disability studies are definite options I’ve been considering for grad school. At some point in the future, I will be researching with the business department on employee engagement and work-family balance. As an advocate for the disabled community, I continue to serve as a guest speaker for various classes and workshops in the Holland/Zeeland area. (I’m now booking engagements for the fall for interested classes/organizations!) I also record podcast episodes with other neurodiverse students (Sam included). My goal in this is to give other neurodivergents a chance to share their stories, especially women and the BIPOC Autistic community. I post these on the podcast’s YouTube channel (Unmasked Podcast) and social media (@lreinardy). Email me, message me, find me around campus [in the Jack or the Keppel House]. I am more than ready to continue this conversation.
-Sam: The future for me involves much exploring. I have been recently blessed with the pleasure of soon serving as a TA and Creative Consultant for Professor Susan Ipri Brown as she prepares to launch a new class about community engagement. While the ultimate dream is to be an author or screenwriter, another hope is to explore future endeavors such as Graduate school, Torchbearers International Bible School, or even a job with Wycliffe Bible Translators. After becoming acquainted with her cause, I plan to team up with Leah for her podcast and speaking engagements to learn more about what it means to be an advocate for the neurodiverse community. I wholeheartedly believe that there is a great deal of beauty, courage, and empowerment, with the fact that we are publically reclaiming a condition that we once thought of as a hindrance. We are a hopeful pair. We are a curious pair. This is another proud step on our fascinating journey of growth.
*Masking: Intentionally learning and mimicking neurotypical behaviors in the majority of social interactions.
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