Tag: autism

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A critique of awareness

Welcome to the second semester of NeuroDivergent! While I know that my final column last semester may have given the impression that I was done as a columnist, I still have the desire to do more deep dives and tell more stories. So, to kick things off in a new year, here’s a (hopefully well-structured enough) rant inspired by seeing one bumper sticker on the way back to campus.  

Simple phrases are the key cogs of successful charitable initiatives. Fundraising organizations look for phrases that succinctly summarize their goals, create a sense of urgency that leads to enthusiastic donors and can be easily promoted via shouts at rallies or Instagram hashtags. Among these campaigns, few words are deployed as much as the term “awareness,” a term that seems unproblematic but can produce unhelpful — or even harmful assumptions about people who experience hardship. 

When the language of “awareness” is used, it often refers to debilitating conditions or circumstances. Think “cancer awareness,” “climate change awareness” or “bullying awareness.” All three of these examples blatantly call attention to problems. Furthermore, awareness then necessarily inspires action to address these problems before they damage more people’s lives. 

But what if people are told to be aware of something, even though it isn’t a problem in the first place?   

This is my gripe with “autism awareness” — a phrase I’ve witnessed around me throughout my life. Although many of the people who hashtag the phrase and put it on their bumpers are genuinely well-intentioned, I believe that whenever anyone states that one should be “aware” of autism, autism becomes implicitly pathologized. This discourse indirectly makes the case that much like cancer, autism is a problem that must be stopped. Thus, autistic children become tragedies, treated like innocents who had their lives permanently altered by a harmful force in their brains. As a result, we consider solutions like searching for the “cure” to autism or utilizing degrading forms of therapy, or else these autistic individuals are doomed to a lower rung on the social hierarchy. While the people advertising the “awareness” slogan may not be explicitly making such claims, they mold the cultural discussion around autism in a way that makes these ideas more prevalent. 

Now, being autistic is not easy. It can facilitate stress in social situations where you’re constantly worrying about coming off as awkward. It can make you feel sensations on overdrive, often against your will. But something being occasionally challenging doesn’t make it a problem. The difficulties faced by autistic folks do not justify the framing of autism as a “disease,” as something that people need to become aware of to help prevent or cure. For all the challenges, autistic people also can understand our world in a unique way, a way that doesn’t limit itself to the burdensome standards of neurotypical expectations. In addition, by building welcoming cultures for neurodivergent folks, we can give them the avenues to process their personal struggles or insecurities. Rather than treating autism as the problem, we should identify the ways in which we have collectively failed to empower autistic individuals in ways that amplify the challenges they encounter on a daily basis. 

Unfortunately, we often turn down opportunities to do this. Because we automatically associate “awareness” campaigns with positive charitable efforts to improve people’s lives, we give our money and volunteer hours without taking the time to consider what the actual “problem” is. In our hectic lives, we often don’t spend enough time reflecting on how supposedly charitable organizations describe their goals. We simply listen to their phrases and buzzwords and assume that they must be doing the right thing. While this is a clear issue for how we think about autism, it’s also a general issue with how we think anything we use charity to address. 

To be clear, there are numerous legitimate groups that use their resources to empower autistic people. The Autistic Self Advocacy Network (ASAN), for instance, is led by autistic people and forefronts the goal of ensuring equal rights and opportunities for neurodivergent individuals. However, it’s easy to be manipulated by people and organizations with fancy logos and memorable slogans that lack a vision for empowerment. I’m guilty of this too, as I’ve occasionally contributed to organizations because they claimed to be helping autistic people — only for me to eventually discover that their projects treat autism itself as the reason for people’s pain and suffering. 

We should be holding these organizations to higher standards, encouraging them to take into account the insights and perspectives of autistic people and support justice-oriented solutions. In order to do this, however, we need to think before we elevate these organizations’ slogans and phrases so that we can recognize when their aims are misguided. We also need acknowledge that building an inclusive culture goes beyond simple awareness campaigns; rather, it requires systemic action to improve educational, political and social environments. 

All of this is challenging work — much more challenging than spreading “awareness.” But inclusivity can only be ensured by those who are focused, dedicated and willing to deeply analyze the most common narratives about autism.  

Jack Griffiths is a senior at Notre Dame majoring in English with a supplementary major in global affairs. His areas of interest include neurodivergence, migration and the intersections between faith and public policy. When he’s not writing, you can find him singing with the Liturgical Choir, walking around the lakes or playing Super Smash Bros with folks in his dorm. He can be reached at jgriff22@nd.edu.

The views expressed in this column are those of the author and not necessarily those of The Observer.

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An aspie’s gratitude

Head spectrum is the cognitive carnival. Your neurons have soared off the rails. So hold on to your everything, ladies and gentlemen. Behold the hidden wonder of the world and watch as thoughts bounce on all the cranium walls. 

Getting the opportunity to (metaphorically) spill ink about my personal experiences and about neurodivergence more broadly has been an immense pleasure. For most of my experience at Notre Dame, I generally didn’t tell anyone I was autistic. This wasn’t necessarily because I felt like I would be discriminated against for doing so. I simply thought that there was no need to, that I could just maintain course, that disclosing my neurodivergence would just make my relationships confusing or complicated. In essence, I didn’t talk about it because I didn’t feel like I needed to talk about it. 

Head spectrum is, “Oh shoot I said that thing to that person and tried to say that thing but what if they thought I meant that other thing and what if I become a thing and not a person but just a thing or an other that tries to pass as a person second third fourth-guessing in case the mask has cracks.” Head spectrum is passing passerby and pondering if passing puts your personhood in some cell submerged beneath the concrete of cultural acceptance.  

Writing the column “NeuroDivergence” has effectively removed the barrier that exists between my inner self and the world around me, and I firmly believe this is for the better. Because I’ve thoroughly described my thoughts, struggles, successes and hopes in my articles, I don’t have to constantly decide whether to tell or not tell a Notre Dame friend about being on the spectrum. Becoming more open about my neurodivergence has also led to many insightful conversations with peers who I previously never knew where also neurodivergent. In sum, this column has fundamentally changed me.

Thus, I thought it would be appropriate to give thanks to all who have made this possible. 

To Hannah and the rest of the Viewpoint staff at The Observer: Thank you for giving me the chance to write paragraphs upon paragraphs about the complicated, quirky world of neurodivergence. 

To all the people who emailed me kind comments after the publication of some of my articles: Thank you for reminding me that none of us are alone in navigating an often-uncooperative society with often-uncooperative institutions. 

To my parents: Thank you for encouraging me in my decision to write this column and for raising me with the moral that I should accept all that I am.

To my sister: Thank you for making me smile every time you pointed out one of my articles and said, “That’s my brother!”

To the Writing Center: Thank you for giving me the opportunity to travel and meet other neurodivergent individuals with similar academic interests, giving me the chance to discuss the concepts I’ve written about with other like-minded people. 

To my friends from the Lit Choir: Thank you for being one of the first audiences for my columns, and thank you for helping me develop a great soundtrack to ease my nerves as I write. 

To Notre Dame: Thank you for providing me with a fulfilling place where I have learned to navigate some of the most complex social interactions I’ve ever had. While there are still occasional difficulties, you’ve made me confident enough to find myself within the communities I’ve become engaged with.

To all my readers: Thank you for listening to my rants, secrets, poetic tangents and investigations. I hope that my column has been a means for you to dig deeper into the topic of neurdivergence, to recognize that there are myriad neurodivergent people who you’ll encounter in your daily life and that all of them deserve to have their disabilities, differences, challenges, strengths and quirks validated rather than ignored or chastised. 

Head spectrum is grabbing something from the basket on your desk to tail around as you think about entering a brave new world. Head spectrum is the total acceptance of occasionally ordered chaos. Head spectrum is realizing the universal difference of cognitive composition. Head spectrum is me, but not just me. 

Jack Griffiths is a senior at Notre Dame majoring in English with a supplementary major in global affairs. His areas of interest include neurodivergence, migration and the intersections between faith and public policy. When he’s not writing, you can find him singing with the Liturgical Choir, walking around the lakes or playing Super Smash Bros. with folks in his dorm. He can be reached at jgriff22@nd.edu.

The views expressed in this column are those of the author and not necessarily those of The Observer.

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Racial experiences of neurodivergence: An introduction

Being a white man, I fit within the general population’s preconceived idea of what an autistic person looks like. When asked to picture an autistic person, many people will automatically conjure images of young white boys playing with trains. This conception overshadows the perspectives of those who do not fit this expected mold; in an earlier column, I focused on women as people who are negatively impacted by this trope-reliant view of neurodivergence. This week, I’d like to observe how neurodivergent people of color also face unique challenges, as they must overcome grisly intersections between racial stereotypes and stereotypes of the neurodivergent. 

Before going further, it is also important to acknowledge that “neurodivergent people of color” should not be viewed as a monolithic group. As I shared in my first column of the year, neurodivergence can manifest itself in wildly distinct ways from person to person. When one combines this fact with the reality that racial experiences can also vary significantly, it’s easy to recognize that there’s no possible way to describe all the different experiences that neurodivergent people of color can have. So, for this column, I simply hope to present a few of them in the hope of starting more conversations. I also hope that doing so will help white neurodivergent folks — like myself — to broaden our own understanding of our conditions to account for these differing racial experiences.  

Neurodivergent Asian Americans primarily face obstacles created by the “model minority myth.” Because many people presume that Asian Americans are inherently high-achieving and thus do not require assistance, they might be slow to acknowledge challenges some of these Asian Americans face due to possible neurodivergence. The prominence of this positive stereotype, when combined with other factors such as “shame, socioeconomics [and] cultural barriers,” results in many in the Asian American community “being underrepresented in the disability community.” Due to this underrepresentation, schools and workplaces are often reluctant to provide accommodations for disabled Asian Americans, including those who are neurodivergent. Due to the lack of proper accommodation, an insufficient understanding of neurodivergent conditions and society’s insistence on standards that cater to the neurotypical population, these Asian Americans often resort to masking, or oncealing their quirks and idiosyncrasies. For instance, author Helen Hoang — who was not diagnosed with autism until she was 34 years old — stated that she masked her autistic traits due to “her family’s lack of awareness of autism and being pressured to conform from a young age.” 

Similar to their Asian American counterparts, neurodivergent African Americans face issues related to under-diagnosis and underrepresentation. This under-diagnosis means that neurodivergent African American children are often assumed to be troublemakers or nuisances. For example, a study by Mandell et al. focusing on Black autistic children determined “that Black children were identified as having ASD later and were more likely to be diagnosed with conduct disorder or adjustment disorder than were white children.” Similar issues arise for African Americans with ADHD. Dr. Napoleon Higgins, a Texas psychiatrist, points out in an interview with CHADD that “Black young men … [are] more likely to be diagnosed with conduct disorder or oppositional disorder” and that “a young Black woman who is inattentive, who’s struggling in school, may be perceived as being slow.” In these situations, criminalizing and demeaning stereotypes of Black people contribute to neurodivergent African Americans being regarded with scorn rather than with compassion. Furthermore, African Americans already have to navigate a broader society that disregards Black culture as disorderly and disruptive; these negative conceptions can prove especially harmful for neurodivergent African Americans, who might also be viewed as disruptive due to the characteristics resulting from their specific conditions. 

These constitute just a couple examples of the implications of racial experiences of neurodivergence. They demonstrate how it is crucial to understand neurodivergence as one facet of an intersectional lens, one that acknowledges how multiple identity factors can play a role in one’s relationship with culture and society. While there is a multiplicity of other people’s stories that exist, far more than I could cover in a 700-word column, I can still leave you with an important reminder: Avoid narrow, stereotypical, trope-laden thinking. Whenever you’re asked about neurodivergent people, don’t rely on the stereotypical image of the white boys with trains. Doing so erases a myriad of people who are also trying to navigate the neurotypical world.

Jack Griffiths is a senior at Notre Dame majoring in English with a supplementary major in global affairs. His areas of interest include neurodivergence, migration and the intersection between faith and public policy. When he’s not writing, you can find him singing with the Liturgical Choir, walking around the lakes or playing Super Smash Bros. with folks in his dorm. He can be reached at jgriff22@nd.edu.

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The forgotten women

In my columns, I’ve primarily focused on my own experiences to provide insight into neurodivergence. However, while I’ve enjoyed sharing my thoughts and personal history, there are obvious limitations to this approach. Neurodivergence can manifest itself differently from person to person, and one’s other identity factors can also contribute to unique experiences. Hence, this week I’d like to focus on how neurodivergent women encounter their own specific challenges, challenges formed by the toxic intersection of misogyny and anti-neurodivergent discrimination.

While neurodivergent women have always existed, there are typically let down by exclusionary diagnostic criteria. Autism diagnosis methods were “developed using the experiences and symptoms of cisgender white males” (Astra). ADHD diagnostic methods are similar; the “early studies were based on the behaviors of white hyperactive boys” (ADDitude Editors). As a result, many of these women have never had their neurodivergence officially recognized, leaving them in an often-lonely position of uncertainty, even when they know that something sets them apart from broader neurotypical society. This underdiagnosis has had ripple effects, influencing popular conceptions of neurodivergent conditions, as most people will imagine a boy when considering the prototypical example of a child with something like autism or ADHD.

More challenges arise when people dismiss potential signs of neurodivergence due to gender stereotypes. If a girl on the spectrum cries due to overstimulation, we say that she’s just being excessively dramatic and emotional. If a girl with ADHD struggles to complete certain tasks in the classroom, we simply shake our heads and call her scattered, and then we tell her that she’s simply not destined for academic success. Instead of considering the possibility of neurodivergence, we crush girls and women under the weight of gendered tropes, producing feelings of stress and insecurity.  

Because our institutions fail to recognize and dignify neurodivergence, young women are often implicitly forced to “mask,” or hide, their quirks and differences; even if something produces anxiety, they’re left with no option other than to internalize their worries and concerns. The editors of ADDitude Magazine note that “society’s long list of expectations for women — managing the self, the family and the home — requires consistent coordination of executive functions.” Although “women with ADHD are not well-wired for these demands,” they must conceal their personal concerns in their attempts to satisfy such standards (ADDitude Editors). Zhara Astra, an autistic woman who is currently a professor at Arizona State University, notes similar struggles, sharing that her peers never “suspected [she] was on the spectrum” partly because she “had become accus tomed to masking [her] quirks.”

Challenges can persist in adult life, particularly in relationships. In a keynote address to the United Nations, Autistic Self Advocacy Network’s Julia Bascom discusses how autistic women, and neurodivergent women in general, experience higher levels of domestic and gender-based violence relative to neurotypical women. She explains that due to “lifetimes of behavioral conditioning and compliance training,” neurodivergent women are often “groom[ed] and victimize[d]” (Bascom). Even worse, when neurodivergent women try to speak about the violence they’ve endured, their different communicative tendencies and preferences might result in service providers failing to adequately assist them (Bascom).

Indeed, misogyny and ableism can coalesce to create enormous obstacles for neurodivergent women seeking recognition and respect. To remove them will require the efforts of many different societal actors, from academic communities to individual people.

First, the field of psychology must explore and address the under-diagnosis of neurodivergent women. In particular, diagnostic criteria that is currently based on data of white male boys should be updated to acknowledge the different ways conditions like autism and ADHD can manifest in women. Diagnosis can be empowering because it serves as “an answer and an explanation…a way out of cycles of self-blame and guilt…a passport to an entire community…[and] a connection to the understanding, supports and services [women] need” (Bascom). This empowering tool can help reverse the negative impacts of the insecurity experienced by women uncertain about their diverging minds.

Second, families of possibly-neurodivergent girls should cultivate an environment of acceptance. Instead of viewing these girls’ anxieties as inconvenient drama, they should recognize them as genuine emotions that demand empathetic responses.

Finally, and most importantly, everyone — including neurotypical people and neurodivergent men — must actively surround themselves with the perspectives of neurodivergent women. In the process of writing this article, I consulted various articles written by women who have provided me with insights that have broadened my understanding of autism beyond the limitations of my own personal experience. I’m eager to delve further into these female experiences. I hope that in response to my article, you will join me, taking a few moments to look for neurodivergent female perspectives, whether they exist in social media posts, articles or creative works of art. Doing so can prevent us from, to use Julia Bascom’s words, “tell[ing] narrow stories about autism,” such as ones that suggest that “being autistic and being an adult or a woman are incompatible.”

Jack Griffiths is a senior at Notre Dame majoring in English with a supplementary major in global affairs. His areas of interest include neurodivergence, migration and the intersections between faith and public policy. When he’s not writing, you can find him singing with the Liturgical Choir, walking around the lakes or playing Super Smash Bros with folks in his dorm. He can be reached at jgriff22@nd.edu.

The views expressed in this column are those of the author and not necessarily those of The Observer.

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Autistic amplification

Your six-year-old self timidly clings to your mother’s hand as your eyes are bombarded with harsh rays descending in deluges making you feel like a sweaty performer for the world’s worst stage show as your reddening ears start to swell with the cacophony of babies crying, scanners beeping, suitcases rolling and intercom blaring as you look up to the towering ceiling but regret doing so because now you feel like a powerless pawn in your black tennis shoes from school that are starting to dig and nip at the toes on your feet that aren’t used to walking for this long until you arrive at the giant steel capsule in which you try to stay still for the next two endless hours.

I struggled to navigate large, crowded spaces when I was younger. The airport, with its incessant noises and obnoxiously bright lights, felt like an alien planet and I felt like a bewildered astronaut, with every little detail giving me a unique reason to feel unsettled. When encountering this full-on offensive of stimuli, I often had no solutions other than to cry or to mentally “shut down” and isolate myself within my brain, not saying even a word to anyone. The airport wasn’t the only thing I found intimidating. Pep rallies in my elementary school’s gymnasium overwhelmed me due to the constant shoe-squeaking as well as the wonky acoustics that made each yell seem exponentially louder. I also struggled to eat certain foods, even something as simple as spaghetti, because feeling the slippery texture in my mouth would give me goosebumps.

Even as a senior in college, I still often feel like that astronaut. Walking up the stairs of DeBartolo Hall during class transition periods makes me feel on edge with its hordes of bodies moving in all directions. I can get frustrated and overwhelmed if the noise from a nearby dorm party leaks into my room at night, almost always obligating me to listen to calm music on my noise-cancelling headphones, especially if I need to focus on finishing an assignment. And whenever I wear a suit for a formal event, I constantly feel my scratchy dress pants rubbing against my legs like a cheese grater.

I’ve learned how to respond to my sensory overload, how to recognize moments when I need to enter a quiet space by myself to calm my nerves and how to take deep breaths when taking in new and intimidating sights, smells, sounds, tastes and textures. Fortunately for me, my family and friends have dedicated a significant effort to adapting to my unique sensory preferences. Whenever my family and I sit down to eat at a restaurant only to discover that every seat is full and noise is everywhere, they make sure to ask me how I’m feeling, or they might bring up fun conversation topics to help me distract myself from the stimuli. My friends at Notre Dame recognize that I often prefer quiet, smaller meetups over large, raucous parties, so we form weekend plans accordingly.

In essence, those close to me understand that being autistic means that all my senses are amplified, and they know what options they can provide for me to help me navigate the stresses of overload. This support, alongside my growing understanding of how my brain operates, has allowed me to succeed in environments that would have seemed impossibly overwhelming to a past version of myself. For instance, I use my “full heart and voice,” as the Notre Dame cantor says, when singing bombastic choral anthems with the Notre Dame Liturgical Choir, and I thoroughly enjoy the atmosphere at Notre Dame Stadium on game days. Being part of loving, accepting spaces has helped me learn how to thrive in these situations.

Sadly, many folks have not received support from others to help them process sensory overload. Many neurotypical people simply do not comprehend this type of experience, leading them to respond in counterproductive ways when their neurodivergent peers seem stressed. Consider this example: a young neurodivergent child might cover her ears or cry as she enters a loud cafeteria, but faculty members might simply ignore her, or worse, try to diminish her experience, telling her that she’s simply overreacting. This compounds her anxiety. Not only are her senses being driven to the limit, but no one is willing to help her. She has become isolated, left to fight these complex nerves and fears by herself.

We can do better than that. We can acknowledge the anxieties people face in environments with myriad unique stimuli. We can provide more quiet spaces in our classrooms and workspaces. We can ask our peers what we can do to make sure they feel welcome and comfortable.

In any case, I’ll cease my rambling for now. If I made this any longer, I worry I would’ve made you feel overwhelmed.

Jack Griffiths is a senior at Notre Dame majoring in English with a supplementary major in Global Affairs. His areas of interest include neurodivergence, migration and the intersections between faith and public policy. When he’s not writing, you can find him singing with the Liturgical Choir, walking around the lakes or playing Super Smash Bros. with folks in his dorm. He can be reached at jgriff22@nd.edu.

The views expressed in this column are those of the author and not necessarily those of The Observer.

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Dancing to my inner rhythm

Autism isn’t just an abstract condition that hides in the recesses of my mind. It animates me. It makes me move, sway and dance in unusual patterns. It makes me “stim.”

When I was in early elementary school, I would wave my fingers in front of my face whenever I was excited, such as after getting a good grade back on a spelling quiz or while playing my favorite games on my Nintendo DS. Today, while I no longer habitually “flap” my hands in this way, I still find that my body often moves in tune with my inner rhythm. I might be sitting in a lecture and suddenly notice that I’ve been rapidly lifting my foot up and down for the past several minutes, as if there’s an imaginary organ pedal that I’m using to play the music of autism. When working on homework in the evening, I might feel the desire to get out of my chair and pace around, going in small circular odysseys in my dorm room. Next to my desk, I keep a basket of small toys, including a rubber ball, some lavender-scented putty and an assemblage of plastic cubes attached to each other. I have these in case I need to squeeze or spin something in my hands while completing other tasks, such as participating in a Zoom meeting.

This is stimming, which is often defined as “self-stimulatory behavior.” Through repetitive movements, stimming allows people to manage high levels of excitement or to help them focus. Stimming is not exclusive to autists or other neurodivergent people, as even neurotypical people might find themselves tapping their fingers on their desks or clicking the tops of their pens. However, autistic people often have more noticeable or unique stimming patterns, which can lead to stigmatization.

There are some instances where autistic people learn to manage how they stim, to change how they respond to the music of autism. In my case, however, I’ve found that while I might stim less or in different ways than before, I still consistently experience moments when my excited brain compels my fingers and feet to move around, making it a bit challenging to stay still for extended periods of time.

I suspect that this is the case for a lot of other autistic people. While the specific ways autistic folks stim can vary wildly from person to person, a lot of us will need something to do to satiate the autistic rhythm inside our heads during intensely emotional experiences.

Therefore, it is crucial for everyone — our educators, our supervisors, our leaders, and our peers — to help our communities de-stigmatize stimming. This would involve educating people about why many autistic people do repetitive movements that seem unusual to others. That way, instead of responding with suspicious glances, they recognize that these neurodivergent people are simply trying to manage and make sense of the complex feelings they’re encountering — a daunting challenge that anyone, even if they’re neurotypical, can relate to.

This is in line with how many disability theorists conceptualize a “social” model of disability. Rather than blaming individual people for struggling to adapt to often-unwelcoming institutions, the social model suggests that the struggles that disabled individuals face are primarily due to societal barriers and prejudices. In the case of people with autism and other neurodivergence, we should work to challenge discriminatory policies, practices and attitudes rather than suggesting that neurodivergence itself is the problem. Abandoning harmful and inaccurate assumptions about stimming is one crucial step to achieving this goal. 

In the meantime, I’ll continue to move, sway and dance to my rhythm.