“She’s always covering her little ears around loud sounds.”
“It’s just a baby crying. You seem rude plugging your ears. It can’t help it.”
“Are you three years old? Uncover your ears, and maybe you’ll actually like the music.”
“You’re so picky with your food that it’s embarrassing.”
“I said to try it, not to pretend to gag and immediately spit it out.”
“Those lights cannot be giving you a headache. They’re not even that bright!”
And most recently: “Are you seriously going to wear earplugs into this restaurant?”
These are just a few of the things I’ve heard throughout my life whenever I let it be known that a sound, taste, or light source was causing me extreme discomfort, and on some occasions, complete dysfunction. Little did I know that this is a majorly overlooked symptom of my own neurodivergence: Attention Deficit/Hyperactivity Disorder (ADHD) paired with Sensory Processing Differences/Disorder (SPD). I’m still on my journey of self-discovery, but I’ve found validation in my diagnoses and the communities I’ve found within the spectrum, and this has made all the difference for my well-being.
SPD, in my experience, is generally not as widely known as my other neurodivergences, such as ADHD and dyslexia. Although misconceptions and falsehoods surround my other diagnoses, too, it seems that I get more questions about SPD than anything else. SPD is a neurological condition in which the brain struggles to process, organize, and utilize sensory information (Butler, 2021). It involves seven primary senses: taste, touch, sight, hearing, smell, vestibular and proprioceptive (Dunn, 1997). It is thought to occur in somewhere between five and 16% of the population (STAR Institute, 2020). SPD has typically been associated with Autism Spectrum Conditions (ASC or ASD), but can exist independently, and can also commonly present alongside the following conditions: Attention Deficit/Hyperactivity Disorder (ADHD), Learning Disabilities, Fragile X Syndrome and Generalized Anxiety Disorder (Hethmon & Conrad, 2020). In short, SPD can manifest in many ways, and there’s no one-size-fits-all approach (Butler, 2021).
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Navigating life before I understood there wasn’t simply something “wrong with me” was tough at times. Many people like to claim that they would never bully or tease neurodivergent people with Autism, ADHD, SPD, etc., but I’ve witnessed some of those same people making fun of how people spell online, how picky others’ eating habits are, how “weird” their special interests are, how rude their facial expressions or lack thereof make them seem, or how they “overreact” when someone or something is too loud. I could go on for hours.
My life completely changed in 2020, and not just because of the pandemic. This was the year I was awarded a Fulbright scholarship to study for an MA in design in Newcastle, England–something I wouldn’t have been able to do without the Fulbright Program. As soon as I arrived in Newcastle, however, I realized that I was completely alone, separated from my support system. I remember telling my dad on the phone that I had no structure, no family or friends, no way of managing things. This was also the first time I’d ever lived on my own, let alone in an entirely different country. This sudden change left me completely vulnerable, unable to function. In an instant, everything had changed. My routine collapsed. I stayed in bed most days and slept whenever I could to avoid thinking of how to form a new routine because it seemed impossible.
Around this time, I met one of my best friends, Jess.
Though I knew some people through my flat’s social media group chat, Jess was the first I met in-person. Within 24 hours, she let me know that she’s autistic. Later, she told me that she disclosed this on the first day we met because she knew real friends would stay. Also, I’d already told her that I thought I might have ADHD, which made her more comfortable talking about herself. Her disclosing her diagnoses made room for so much learning, growing, and discussion of neurodiversity, through which I came to understand much more about myself.
Early on, I noticed that we had similar sensory-related experiences. Finally finding someone who understood me on that level was cathartic and enabled our friendship to grow faster and deeper.
I’m also grateful to the Fulbright Program for helping me seek therapy, find a psychiatrist and secure an official ADHD diagnosis. Without them, I probably wouldn’t have been able to get one due to waiting lists and financial barriers. As a member of the global Fulbright family, I’ve made it my mission to give back to the community that’s helped me so much. Starting in 2022, I’ve stepped into the role of president of Fulbrighters with Disabilities, a global, virtual chapter of the Fulbright Association. In this role, I hope to carry out the chapter’s mission of supporting scholars with disabilities around the world and give others the opportunities that I struggled to find.
My university, meanwhile, helped me get my dyslexia diagnosis, which opened doors to me by making accommodations available. My therapist turned out to be a perfect match and helped me navigate many parts of my life that I’d never before understood. At long last, I felt validated, accepted, and cared for, free to be myself. After six months of therapy, I’d already learned many new coping mechanisms that enabled me to better manage executive dysfunction and be my most authentic self. I embraced wearing ear plugs in loud environments. I felt more empowered to speak up for myself if something was making me uncomfortable. I dropped many of the social masks I’d gotten used to wearing. I became more productive than I already was, more organized, and more confident about setting boundaries, something I’d never done before. Sometimes, I still struggle, but I no longer fear I might drown. I’m privileged to say that my family’s also been extremely supportive. Inspired by my transformation, some of them even started doing research and seeking diagnoses as well.
Before heading to England, I’d already developed a plan for my research, which would focus on rural Appalachia and the lack of access to affordable internet services. By the end of my grant, however, I’d added another research project to my plate in the form of a thesis: How society could improve public spaces for those with SPD utilizing improved UX design frameworks. The basis of my thesis was to demonstrate that society must be more accommodating to individuals with SPD in a way that’s easily accessible, supportive, and conducive to direct and concrete change. In my research, I focused mainly on approaches tried in the West thus far to better support people with SPD. I also investigated ableism in current UX/UI design practices and how to overcome it with newer accessibility models.
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Cynthia Bennett, a leading advocate in UX disability and accessibility practices, says that often, when designers think about design, they tend to approach it with the assumption that “I am the designer” and “you are the user.” This way of thinking locks in the premise that the designer is forever separated from the user and therefore can only ever design “for” them, not “with” them. Aparna Pasi, the accessibility lead at Deque, has said that she hopes that one day, accessible design will become a more prominent practice within the design community. Pasi concludes that we shouldn’t see accessibility as a project, but rather as a process (Pasi, 2020). I hope to utilize the research I accomplished to help others like myself and beyond.
These days, when I hear ableist comments about my sensory problems or other diagnoses, I take it as an opportunity to teach and learn. The people whom you love the most can unknowingly be ableist. When this happens to me, I’ve learned never to charge in with anger because I get it: before I learned what I know today about neurodivergence, I was in their shoes with my own internalized ableist thoughts, which plagued me throughout childhood. Growing up, several adults around me fed me stereotypical and overly generalized comments about autism, ADHD, and dyslexia. As an adult, I reflected on those comments with more clarity, and this, as well as talking and working with other neurodivergent people and educating myself, was how I managed to grow. Little by little, I hope that our conversations will make people who’re in the habit of making those unwittingly harmful comments more aware so that they, too, can learn and grow.
I’ll end with one of my favorite quotes, which comes from Harvey Blume: “Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment?”
by Geghie Alayna Davis
news.utk.edu/2020/05/06/design-grads-road-home
linkedin.com/in/geghiedavis
