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The Worst is Over!

By Yamila García

A new semester has started and at each beginning, I always tell myself: “You are going to feel overwhelmed. You are going to think that it is impossible and that you cannot adapt to so many changes together. But this has happened many times before and it was never true.” The beginnings are not easy, because, in reality, they are changes. But we need them to move forward and achieve our goals and dreams.

As a neurodivergent person, I perceive routine changes as catastrophes that turn my world upside down. It’s been three weeks since the semester started and I finally feel like I’m coming out of the adjustment so I can start learning. My starting point is this. Three weeks later than many of my classmates is when I can finally sit in a class, listen and really understand what my professors explain. Previously, it was just noise, other distractions, and discomfort. I even turned in the first quiz of a class blank. None of the previous weeks were to learn the most important concepts of the class, as everyone else does. For me, those weeks were just to get used to the new buildings, the new chairs, the new voices of the teachers, and the recurring noises and the lights of the classroom. I know that my adaptation process requires these adjustments and that it takes me a few weeks, and I know that many of us, neurodivergent or not, go through the first weeks of school as if we were embarking on a journey without a map or GPS.

At the beginning of every semester, I think about how simple it would be to help us shorten this adaptation time. What would particularly help me would be to have in advance the complete syllabus of all the classes with the schedule of exams and assignments, knowing what apps or websites we are going to use, videos of the professors introducing themselves, early access to Husky CT, and any extra tools that we’ll use during the semester. It’s not that I don’t want to make an effort to adapt. The issue is that adapting takes so much energy that it doesn’t allow me to learn while I adapt. We have accommodations during the semester. Why don’t we have them before we start? Why assume that we all have the same starting point? There are many more “new” things each semester that present a challenge for those of us who struggle with changes and new routines. However, once we manage to adapt we can run like everyone else. We are all going to get through this semester and whatever comes after. We just have to be patient with ourselves, accept the time it takes to adapt and understand that our time to speed up comes a little later. Happy Fall semester everyone! The worst is over!


The Anti-Personal Narrative

By Robert

My first thought writing a post for this blog was, “why in the world would I do what I am worst at?” All my teachers in high school knew how awful I was at writing personal narratives. I could write a ten-page research paper on the fall of Rome or some random geopolitical conflict, but God forbid writing anything about myself. The minute I see instructions for a paper containing the words ‘Personal Narrative’, my internal reaction is to hold back the screams I wish to immediately hurl at the professor that assigned me such work.

What I didn’t realize at the time I was banging my head against the wall trying to complete such assignments back in high school, was how many of my neurodivergent peers had feelings like mine. We could debate for hours the semantics of a computer programming language or the political intentions of Putin for invading Ukraine, but the minute the subject
turns personal experiences our minds go blank. Trying to explain ourselves is an exercise in
futility, mostly accomplished in-person by blank stares and in-writing by looking at a blank
Word document for hours thinking of a single thing to write. It is ironic we cannot articulate our feelings considering how unique most of our stories in life are. Although many of us had non-traditional lives and educational experiences, explaining those things to others is as difficult as climbing Mount Everest. So, if you ever have the opportunity to talk to, or end up on a first date with one of us, don’t feel too bad if you get no response when you ask the question: “What about you?” Push hard for answers, it’s just who we are.


Hyperfixations and Special Interests

By A.R.

An integral part of the human experience is having interests – I doubt anybody can dispute that. We develop interests and fixations almost as soon as we’re born and they develop as we grow. However, just like plenty of other things internally and externally, interests and hobbies can come on a lot stronger for those who are neurodivergent.

What is a Hyperfixation?

Hyperfixations are interests that are usually short-term and highly intense. These are commonly associated with ADHD, but anyone can experience hyperfixations. While they can bring a person a lot of joy, they have the potential to overpower basic needs if they get too intense. There are times when people who are hyperfixating can simply forget to eat, use the restroom, sleep, or otherwise take care of themselves. Typically, these interests appear just one at a time as there’s simply not room for more than one. Hyperfixations can come and go and some have even said that their interests have returned to them years after they initially fixated on them.

What is a Special Interest?

Special interests are quite similar to hyperfixations but are considered much more long-term. The intensity of special interests as well as the number varies depending on the person. According to a study done via an online forum for autistic adults, the average amount of special interests that each person reported having was eight (Grove, et al.) Special interests are commonly associated with autism, but again are not necessarily exclusive. These interests can be a subject, an activity, a certain object, a certain food, et cetera. Special interests are not the same as an obsession in OCD where the person feels anxious if they don’t participate in whatever activity they are fixated on.

What Effects Can They Have?

The positive or negative effects of special interests and hyperfixations have been debated for a long time. Some studies say that they impair functioning and communication, while others say they encourage communication and boost confidence. This is really down to personal belief and situation – for myself, I believe it only impairs communication if others refuse to adapt to alternative forms or topics of communication. According to others and in my own experience, special interests and hyperfixations have the potential to provide comfort for those who experience them. They can also encourage social interaction, enthusiasm, and motivation. Interests tend to reflect cognitive strengths – therefore, focusing on these strengths provides an excellent opportunity to boost confidence.

Importance in Engineering and Technology

Neurodivergent people have a great amount of skills to offer the field of science and technology. For example, people with autism often have a higher interest in “systemizable” domains – things like political systems, languages, belief systems, technology, computers, and tons of other areas. This offers a great opportunity for people with these passions to pursue these interests through innovation in STEM. Autistic people also tend to have more specific interests than neurotypical people. This creates an opportunity to develop a high amount of expertise in a specialized area, paving the way for highly skilled engineers, researchers, and more.

References:

Jordan, Chloe Jennifer, and Catherine L Caldwell-Harris. “Understanding differences in
neurotypical and autism spectrum special interests through Internet forums.” Intellectual and
developmental disabilities vol. 50,5 (2012): 391-402. doi:10.1352/1934-9556-50.5.391

Grove, R., Hoekstra, R.A., Wierda, M. and Begeer, S. (2018), Special interests and
subjective wellbeing in autistic adults. Autism Research, 11: 766-775.
https://doi.org/10.1002/aur.1931

“Finding Strength in Special Interests: A New Way to Frame Autism.” NYU Steinhardt,
New York University, 4 Dec. 2020,
https://speech.steinhardt.nyu.edu/blog/special-interests-strength-based-approach/.

Simons, Annaliese. “The Neurotypical’s Guide to Being Neurodivergent.” EBHS Bear
Hub, 28 May 2021,
https://ebhsbearhub.org/4400/showcase/the-neurotypicals-guide-to-being-neurodivergent/.


I Know What Works for Me

By Yamila García

I really wish we could have options at school. The class I thought was going to be the easiest one, became the hardest one. Not because of its content, but because of the rigid structure that did not allow me to find a way to learn it properly.

There are times when professors catch my attention easily and are very organized. Those always became the easier classes, even if the content is the hardest. For example, in one class, I started attending lectures with the professor, but since they explained a little too fast for me, I got lost many times and had to watch the lectures again after class. Recording classes is definitely one way professors can help us. But that is not all. They also can post videos of another professor explaining the same topics. I think that shows an acknowledgement that we all learn in different ways. And in one class, it turned out, I understood that teacher much better. So, I stopped attending lectures and my performance got better since I was using my time more efficiently and could study more. The professor never took attendance, never tried to convince us to learn in any specific way. They understood that we are all adults and have our own ways.

On the other hand, some of my previous professors have not been flexible at all. Other professors often don’t record classes, don’t have alternative material, take attendance (that isn’t even graded for participation), and make us fill out  a form explaining the reasons for absence. I have even received an email after missing 2 classes in a row. In one class, the moment I noticed that the professor’s classes weren’t working for me, I didn’t want to tell them. I didn’t mean to be hurtful or rude. So, I did what I was supposed to do. I attended classes anyway and that wasn’t the best decision. If I had to do it again, I would tell my professor that the classes were not working for me and that I would prefer to use the little time I have learning the content in some other way. Maybe going to the tutorial center, with videos I could find online, just from the book, etc. It is just that some professors are not open to “other ways.” I wouldn’t say the professor’s teaching methods weren’t right, they are just not what works for me.

When things like that happen, I get stuck.  It is as if I cannot see good there. I don’t feel comfortable, so, I don’t like the class (even though it is something I would like in another situation), I don’t like the building, and I don’t like anything related to it. I feel so limited, I feel that I can’t do anything that could help me feel better about it. If I had possibilities, things would feel different, of course. In one class, with all the stress it caused me — with all the discomfort, pressure, and frustration I ended up with got a huge amount of stress that is affecting my health now.

I wish we could have options. I know there will always be difficulties, and nothing will ever be perfect, but there are practices that make things simpler. Programs and classes that present their complete schedule from the beginning of the semester, have a consistent methodology, offer different materials, recorded classes, etc. I don’t know if they do it consciously or if being organized is their standard operating procedure, but even if they don’t know it, they help us a lot that way.


Trying to adapt

By Yamila García

If I had to compare this semester with the previous one (my first semester at UConn), I would say that it feels as if I lived each semester being a different person. My first semester, like most of my “first experiences” on anything, was not great. I was just glad I passed my classes because I couldn’t expect more than that while trying to adapt to every new thing in this new place for me. Everything was new and so uncomfortable and frustrating. I even feel proud of myself for passing the classes in such discomfort! This semester, the second one here, was quite different. I had less uncertainty and of course, that helped a lot. My grades are better, I know where to go, where to find a quiet place to stop my mind, what food to eat, where to charge my electronic devices, different ways to get to different places, etc. I know that needing a whole semester to adapt seems like a long time, but that is what I needed and that is ok because it doesn’t matter how much time I need, but to get there and feel that things are not strange anymore.

Every time I have to break my routine and start building a new one, it is as if my true self hides and won’t appear until I have a new routine and the discomfort is gone. It happens with new people, new places, even new food! It seems like two different personalities, but it is just me exploring, getting used to things, finding that structure to support me, and when that happens my true self leaves the cave and can go out feeling safer. As I mentioned in previous posts, I am not sure what I am safer from, but I don’t need to know it. I just need to continue adapting to my environment and every change that happens. The semester is almost over and new things are coming again. One would think that after so much time I should get used to facing changes and new things, but it never happened. What does happen is that each stage passed, despite not taking away the discomfort of the next challenge, does give me the certainty that I am going to overcome it too.


Dare to Dream

By Yamila García

Like many other people with ASD when I was a kid a was obsessed with science. Nothing captured my attention more than galaxies, astronauts, and space rockets. Another reason for people to see me as a “weird” girl, a girl who lives wrapped in fantasies and does not understand reality. Despite always being aware that I needed to adapt to society, I was never willing to give up my uniqueness. If I was going to fit in, I was going to do it on my own terms. 

I went to my middle-school library every day until I finished reading all the books they had on astronomy and astronautics. I kept painting galaxies and using space-themed binders all my school years through high school. As a teenager, when all my classmates had binders or backpacks with the images of their favorite singers, I had someone very special in mine that had nothing to do with singing. His name is Franklin Chang-Díaz. He was an astronaut and my idol for as long as I can remember. I had his pictures on my room’s wall, on my binders, articles of his work everywhere, and he was also the wallpaper on my computer for many years. I felt so proud and inspired by him being the first Hispanic astronaut. I read and learned a lot about his work which I found amazing, I followed his project of plasma propulsion for use in human flights to Mars. I knew he was born in Costa Rica, he made 7 spaceflights and he got his doctorate in applied plasma physics from MIT, but among so many things I knew, I missed a detail.

When I received my acceptance e-mail from UConn, I was at the Commencement ceremony of Three Rivers Community College, graduating with my associate’s degree in Computer Science. Of course, I could not be happier! Immediately after the ceremony, I got back home and opened all the links that were sent to me to learn more about my new university. Exploring the website, I found the “notable alumni” section. I think at this point you can guess what detail I missed and who I found there… Franklin Chang-Díaz received his bachelor’s degree in mechanical engineering at UConn and when I found out that I couldn’t stop crying. I was about to start studying at the same school as my lifelong idol. I cried for that dreamy and fanciful girl who should never have adapted too much to anything. I cried with gratitude because as much as one tries to fight against its essence, life (and hard work) always ends up putting things in their place. 

In the ITE building, there is a showcase with photos of outstanding alumni from the engineering school. When I feel a little down or overwhelmed, I go there, look at his picture and remind myself to let the fanciful girl in me continue to dream and be as weird as she wants to be. There was nothing wrong with me, the problem was those who did not dare to dream and did not want me to be myself. My “obsession” was just pointing me in the right direction.

https://www.foundation.uconn.edu/notable-alumni/

 


The Future is Accessible

By Jess

I was diagnosed with autism at age 37, a year and a half after beginning my fourth attempt at a college education. It took me a while to unpack where autism fit into my education background. Like a lot of newly diagnosed autistic people, I not only had occasional doubts about the accuracy of the diagnosis, I had trouble admitting that I did, in fact, have a disability. 

“Some autistic people need accomodations, but if I used them I’d just be taking advantage of the system.” 

After two years of having unused accommodations in place “just in case,” reality hit. I was struggling through fluid dynamics and in total denial of my situation. We had passed the time of virtual and recorded lectures, and I would sit in a packed classroom feeling the physical presence of 100 other people, hearing the shuffle of papers, the squeaking of chairs, every small cough, every clicking of a pen or tap on a keyboard. The clack of a door opening unexpectedly scratched the inside of my skull. The murmur of a hushed conversation had the texture of radio static and felt like rough carpet scraping up against my skin. Even the lights were loud. My professor’s lectures would float around me in strings of words and tones that refused to shape themselves into cohesive ideas. 

The moment of clarity finally came during the first exam, when I stubbornly insisted that I could take it with the rest of the class instead of a dedicated quiet space. I was sitting in the back as far away from everyone as I could, but still close enough to hear the shuffling of papers of the young man sitting near me. It felt like sitting next to a squirrel trapped in a cardboard box. 

If you know any neurodivergents, you’re probably familiar with the concept of sensory overload. Human brains are designed to continuously and automatically sort information based on its utility, urgency, and novelty. You didn’t notice the color of the shoes of the woman that just walked past you. You don’t remember the name of the person you met 5 minutes ago. You might have looked at the painting in the hallway you just walked by in the doctor’s office, but can you recall the subject? This selective filtering of nonessential information is important to our daily existence. The yellow umbrella on your container of salt should not be taking up as much of your mental bandwidth as the fact that your sink is running and nearly full. 

Neurodivergent brains do not often filter this information well. Everything is given equal attention. Everything makes it through. Your brain isn’t quite sure if the clacking of a pair of heels in the hallway is more or less important than the conversation you’re currently having with someone you desperately need to speak to, so it’s just going to focus on both.

For someone experiencing sensory overload, the world is everything all at once. 

We deal with this issue in different ways. Some of us wear headphones, some of us are comforted by pulling a hoodie over our heads. An entire mini-industry has popped up around offering us sound dampening ear plugs. Some of us remain centered with stimming, which can mean bouncing a leg, rocking back and forth, flapping or shaking hands, or what sounds like a verbal tic. 

The experience of school can be overwhelming, and before we even set foot in the classroom we’re already at a disadvantage. But, it’s 2022 and I’m hoping we’re past the time of needing to list off a cast of diagnosed and suspected neurodivergents to support the claim that we are no less able to learn and do the work as our neurotypical counterparts. 

A lot of neurotypicals bristle at the idea of these special treatments for disabled students. After all, you’ve had times when you couldn’t focus or couldn’t make it to class. Maybe you have trouble taking traditional tests even though you know the material. Or maybe you just have trouble understanding lectures. Why don’t you get these special accommodations?  Well… You should. 

Medical diagnoses for learning disabilities in the United States is tricky. The accommodations offered by most institutions and programs exist only for diagnosed medical conditions. And as long as we don’t all have equal access to medical care, those accommodations will be for the privileged. Even with medical insurance, the medical community has been slow to catch up to the research and many autistic people, particularly women, are being shut out of the diagnostic process. (Various reasons I’ve heard for discounting a woman’s suspicion that she may be autistic: She’s making eye contact, she’s living independently, she drove herself to the appointment, she’s an adult and only kids have it, or my favorite, she’s an adult and it only matters when you’re a child.) 

The process of accommodations has by necessity created a system of disability gatekeeping, with universities having to rely on medical evaluations and then making judgment calls on what accommodations are appropriate for those who are able to get them.  

Accommodations have been invaluable to improving access to education, but the future of accessibility will be in not needing to request it at all. 

In the past, strict adherence to schedule and in person attendance was a necessity of educating thousands of students at once in an efficient manner. The strict adherence to the schedules required by educational institutions became a measure of moral character and a socioeconomic litmus test. The limitations of 20th century education favored the young, unmarried, childless, able bodied and, obviously, the well-off. Today we’re no longer bound to in-person classrooms and the technology to record, caption, and broadcast lectures is so widely available that most of us carry the necessary hardware in our pockets. 

Most neurodivergents are largely in agreement in what could improve our educational experience. Flexible attendance policies. In person lecture options with captioned recordings. Clear and concise instructions. Quiet, private study spaces on campus. Professors that are familiar with the challenges of neurodivergent students. 

You may notice that these aren’t things that are unique to the needs of autistic students. And that’s kind of the point.


When the Hulk Won’t Come Out

By Aaron Picking

“Must be nice.”  These are the three magic words I hear the most when explaining on exam day why I wasn’t there.  As a matter of fact, it is not nice at all.  The Center for Students with Disabilities (CSD) isn’t a spa.  We don’t get handed a cup of our favorite coffee as we are personally escorted to the VIP section of the test taking area where soft Mozart is playing, and the scent of lavender soothes the mind.  However, it is Shangri-la to those of us who are affected by the noise of fifty others shuffling through papers during an exam.  There are also the gracious instructors who like to talk during the exams with corrections.  My name is Aaron, and I’m on the autism spectrum.  While it may seem like having the CSD is just common-sense accommodations in a university, or any educational setting, it is much more to that for people like me.  I’m thriving at a superficial level in my major because of the CSD.  It’s actually impressive considering the situation.

Let me take you through the journey of a typical exam preparation.  I’m in class two weeks before exam day, and I’m answering questions, and talking to my peers about solutions to homework.  And, then, out of nowhere what happens is a complete system crash.  Now, this doesn’t happen every time.  It’s random.  Perhaps it’s the position of the moon, or mercury in the sky.  All of the lecture videos might as well be in Farsi.  I take notes, go over homework and quizzes, and also can’t remember even writing them.  For somebody like me with goals of going to graduate school, one test is a big deal.  Being on the autism spectrum, when we have a path, that train is at full speed.  This is now an existential crisis.  There is an Avengers film, Infinity War, where Bruce Banner cannot get the Hulk to take over.  Even in the direst of situations, the Hulk emphatically tells him no.  You can see it unfold here: https://www.youtube.com/watch?v=jIHYIiqa5jI .

The CSD allows me to deal with my experience in a healthy way.  I know what I am getting into when I go in there.  There is no backup.  There is no crying.  There is only peace and quiet.  I have sat in that room for an hour and a half without a single answer to a question put to paper.  It’s as if my mind has to feel sorry for me, like a bully on the playground, before allowing me to unlock the information.  There are even times when I think of an answer, only to have my hand write down something else.  Then, in that final half hour, the photographic memory comes out of nowhere, uncontrolled, and unbridled, forcing me to copy everything I see down before it’s gone.  Here’s the thing; I’ve participated in an REU in neuroscience, and will be participating in another REU for chemical engineering.  I’ve been able to keep my GPA high enough to keep my goals of graduate school realistic.  With the struggles that I remember taking exams, I can say with certainty that I would absolutely not be where I am without the CSD accommodations.  Imagine what the world would miss out on if students were not able to succeed on their own terms.  So, yes, in a way… it’s pretty nice.


Life Through Patterns

By Yamila García

The first time I visited Storrs was before starting the Fall semester in 2021. I arrived on Storrs Road, turned onto Horsebarn Hill Road, and parked in my assigned area. There is another sector that I am also allowed to use but I haven’t used it yet. Since day one, I have always taken the same route. I sit in the same places in my classes, eat the same food from the same place, drink the same coffee, read and study in the same building and at the same table. I do it that way not because I love it, but because it gives me a structure and that makes me feel safe. I don’t know what I need to be safe from, I just need that structure so when I have to deal with unexpected situations it doesn’t feel that bad. I guess if I have the rest under control, I can deal better with the “unexpected thing” that is happening. I don’t like to improvise, I always need to have a plan, a map, a way of doing things. If I don’t have that structure everything feels chaotic. Yet, I will be creating a map of that chaos…

It seems that this need for structure leads me to look for it anywhere. Predictably, I have always looked for patterns in everything. If I read something for the first time, before trying to understand what it says, I try to understand the structure of the text. If I am learning a new math topic, first I see exercises that have already been done and that is enough for me to understand the logic of the new topics. If I listen to music, I always separate in my mind the different sections that the song has. I try to find repetitions, connections, and logic in everything that comes my way. Finding patterns guides me through new things and helps me adapt more easily. It has also helped me understand how people communicate. In my native language, I didn’t communicate very well or understand slang when I was a teenager, but that ability to recognize patterns helped me learn how people communicate and be able to imitate them. This definitely helped me and I can say that the process was a success. Today no one would believe that I ever had a hard time communicating.

Doing things repetitively, obsessing over patterns, and looking for structure in everything are simply a way of adapting to the environment around us. That is my way, it is what works for me, it is similar to that of some people and very different from that of others. There are people who don’t stop talking because silence is uncomfortable for them, people looking to make friends with everyone because loneliness makes them uncomfortable, people filling their days with activities because they don’t want to feel useless or because being at home is not a good plan for them. But everyone has a way of coping with what is uncomfortable or difficult for them, even if they haven’t been paying attention and think they don’t do those things. We all deal with something and we have different ways of dealing with it. Just because our ways don’t look alike doesn’t mean we can’t understand each other.


Check Out Your Local “Human Library”

By Yamila Garcia

Last Saturday was World Autism Day. I wanted to write about it but I didn’t really know what is it about, so I started reading about it and I found out many things are going on this day. There are talks, walks, people wearing something blue, and posters with pictures of puzzles everywhere. They talk about promoting inclusion, raising awareness, recognizing abilities, and not stigmatizing. It all sounds interesting, but I wonder who participates in these activities? I found that most of the participants are family and friends of people on the spectrum. Precisely, I do not believe that these people are the main target of the awareness activities. I think this is why so many people still don’t know what ASD is all about. Since I was diagnosed I have asked myself many times whether or not I should share it with others. I had very mixed reactions to sharing it with a few people. Some reacted with concern, fear, and rejection. Others with acceptance and ease that comes from knowing another person on the spectrum or being on the spectrum themselves. I wish we could sensitize the first group, which has nothing to do with the spectrum but probably will come across more people like me and will continue without knowing what it is, and therefore, how to act or work with us.

It is known that we fear what we do not know. So, what can we do so that what we are is not unknown to others? Well, I guess we can share, occupy spaces, get closer and invite them to get to know us as we are. I think an amazing way to do this is the Human Library. If you haven’t heard of this project before, its goal is “to promote inclusion and diversity by challenging stereotypes and discrimination.” The “books” are people who have experienced some kind of discrimination and who lend their time to talk about their experiences. The idea of not judging a book by its cover takes a deeper meaning when getting to know people and stories you wouldn’t know otherwise. How much easier it would be to understand others if we were encouraged to get to know them and not expect uniform behaviors and thoughts. Getting to know people who are different not only opens the doors to others so that they can show you who they are, but it will also leave you learning. After all, who learns by surrounding themselves with people who do and think the same as themselves? I invite you to approach whoever you think is most different from you and see what happens. I am sure that you will be surprised to realize that some of those “differences” that you saw on the cover are not differences and how enriching the exchange is.

https://humanlibrary.org/