I recently participated in a University of California study about autistic people who went to college and/or graduate school. In that study, I was asked about where I went, what my living situation was, my social life, and the best and hardest parts of my years in higher academia. Prior to then, I had looked back on my undergraduate years with a fondness and nostalgia of time well-spent. But when forced to be completely honest with a stranger, I realized it had been far more difficult and trying than I had thought it to be.
Truth be told, being autistic and in college is incredibly tough. But if there's anything I learned, it's not impossible and can have some real benefits. So as my overall career in academia comes to a close, let me describe my college life over a series of posts.
While it doesn't seem like there's an upside to learning you're autistic long after your diagnosis, not knowing meant that I never believed I couldn't have a fairly "normal" life. I didn't think that there wasn't anything I couldn't do if I put my mind to it. And a "normal" life meant that I could go to college, specifically a four-year university program, right out of high school. And being someone who took to academia well, it didn't seem like an unrealistic goal.
I prepared myself as best as I could for what I thought was to come. I took honors and AP classes and applied myself as best as I could. I threw myself into extracurriculars like marching band, orchestra, theater, and my temple's youth group and actually had fun with them. I challenged myself to apply to as many schools as I thought I was qualified for. And while I got more rejections than I would've liked, I ended up getting into four schools.
I was excited for college. I was eager to engage in higher learning and live away from my parents. I had chosen to go to school in northern California - seven hundred miles away from home - and felt that the change of scenery would help me become independent. And I was optimistic that I would have a full social life beyond the confines of high school, especially since I got into a special honors program for my mandated college writing class and would be living among others in that same program.
Needless to say, it was much harder than I thought it'd be. Especially in the first year.
Monday, June 22, 2015
Thursday, June 11, 2015
Music is My Boyfriend, My Girlfriend, and Autistically Powerful
I have almost 13,000 songs in my iTunes library.
You read that right. 13,000 songs.
You're probably wondering who the hell could listen to that much music in one lifetime. Well, I can. Or at least I can listen to my playlist of favorite songs over and over again. That playlist has over 2,000 songs and grows by the day. Put it on shuffle and I could always hear something different over five and a half days and not get bored. I constantly search for the newest and most interesting stuff and make playlists upon playlists of my findings. It pumps me up when I need encouragement and calms me down in times of trouble. And from the Walkman to the gift from the gods known as the iPod, I've never gone anywhere my music to listen to.
It's common for autistic people to have an incredible amount of passion in their favorite subjects to the point of developing expertise in them. This is known as having a "special interest", leading to autistic people being called "little professors". Like all things considering autism, it isn't universal across the spectrum but I've seen it more than enough times to understand how people come to that conclusion. I've got a plethora of these "special interests", and while I wouldn't call myself a genius in any of them I certainly keep up with them a bit more than your average bear.
But music isn't what I'd call a special interest of mine. I'm not a musician, although I have played piano and clarinet in the past. Music just helps me understand life and the world as we know it.
You read that right. 13,000 songs.
You're probably wondering who the hell could listen to that much music in one lifetime. Well, I can. Or at least I can listen to my playlist of favorite songs over and over again. That playlist has over 2,000 songs and grows by the day. Put it on shuffle and I could always hear something different over five and a half days and not get bored. I constantly search for the newest and most interesting stuff and make playlists upon playlists of my findings. It pumps me up when I need encouragement and calms me down in times of trouble. And from the Walkman to the gift from the gods known as the iPod, I've never gone anywhere my music to listen to.
It's common for autistic people to have an incredible amount of passion in their favorite subjects to the point of developing expertise in them. This is known as having a "special interest", leading to autistic people being called "little professors". Like all things considering autism, it isn't universal across the spectrum but I've seen it more than enough times to understand how people come to that conclusion. I've got a plethora of these "special interests", and while I wouldn't call myself a genius in any of them I certainly keep up with them a bit more than your average bear.
But music isn't what I'd call a special interest of mine. I'm not a musician, although I have played piano and clarinet in the past. Music just helps me understand life and the world as we know it.
Thursday, May 28, 2015
How Many Spoons Does It Take To Live A Productive Life?
“A person who is chronically disabled or ill only has a limited amount of expendable energy each day. The spoon theory uses a metaphor of spoons to turn energy into a measurable concept. A person living with chronic illness or disability only has a certain number of spoons in their possession each day, and every small action a person takes can result in a lost spoon. Once a person loses a spoon, it is very hard to get that back until after a full night’s sleep. Simple actions like getting out of bed, taking a shower, walking, and driving can require enormous amounts of energy that people don’t have.“
Quoted from thespoontheory ‘s faq
There are times where I have about zero energy to do just about anything. For example, I'll want to go to the gym and work out, but the muscles in my legs have weakened where I can barely walk. I'll want to write in my journal or on this blog but can't work up the mental capacity to think of anything. I've also gotten physically and emotionally overwhelmed during family trips in humid or tropical climates, despite really loving the vacation itself. I recently barely had enough energy to slice limes and set the dinner table for my father's birthday, in spite of wanting to contribute more to the festivities. I've never quite known why this keeps happening to me and has been a reoccurring source of frustration for me and everyone I know.
Then I discovered Spoon Theory.
Coined by Christine Miserandino of "But You Don't Look Sick", spoon theory postulates the challenges disabled or chronically physically or mentally ill people face presents them with a limit to energy and possibilities to get through the various facets or life than others do. Ergo, every performable task has to be carefully thought out as to what is feasible for that person to do each day and how to deal with every possible scenario. Time and energy has to be thought out in a way many people would never think about. It's not being lazy, it's being strategic given a cap of mental and physical ability.
There's a lot to consider with spoon theory as it pertains to me. I have a lot of energy and capacity to do a lot of things that other autistics might not. I can withstand a lot of sensory sensations (I can wear a variety of fabrics, I can handle exercise as long as I drink a lot of water, I can stand hot weather with an abundance of fans or air conditioning, I love being hugged), I can care for myself (I cook, shower, clean, engage in self-care), and engage in a variety of activities like work and social activities. But I do often find myself limited by the amount of energy I have to do many of the aforementioned given the day and time. I've taken more mental health days from work and school than the average person, I feel limited in exercising my cooking skills, and I don't have the capacity to follow multiple conversations with multiple participants. And it manifests itself in physical weakness and mental and emotional exhaustion.
I'm trying the find ways where I don't exhaust myself doing certain activities. And it's only been recently that I've found any sort of success. If I have to move a lot of heavy objects over a long period of time, I have to take frequent rest breaks so I don't go into meltdown mode. When I train, I know that I can only jog two short laps without my knees buckling down. During large family dinners, I often need to leave the gathering to lie down and rest away from others so I can clear my head and let my stomach rest. All of this is done to make sure I don't exhaust myself, even if I feel like I need to do more. And I'm lucky that I have family and friends who understand and let me do this - no one wants to see me when my limits have been pushed.
As much I like to define myself by what I'm able to do rather than what I'm unable to do, it's critical for people to recognize other's limits disabled or otherwise. Not everyone has the same amount of ability to do things as others and recognizing that leads to greater understanding of others' experiences. If empathy is defined as understanding and valuing other people's personal perspectives and experiences, then understanding others' limitations is a great exercise in practicing empathy. And practicing empathy is critical to progressive growth in the world.
I'm definitely able to do a lot but I have a limited amount of spoons to do it. The more people understand and respect that, the more comfortable I and others will feel operating in the world at our own pace.
Quoted from thespoontheory ‘s faq
There are times where I have about zero energy to do just about anything. For example, I'll want to go to the gym and work out, but the muscles in my legs have weakened where I can barely walk. I'll want to write in my journal or on this blog but can't work up the mental capacity to think of anything. I've also gotten physically and emotionally overwhelmed during family trips in humid or tropical climates, despite really loving the vacation itself. I recently barely had enough energy to slice limes and set the dinner table for my father's birthday, in spite of wanting to contribute more to the festivities. I've never quite known why this keeps happening to me and has been a reoccurring source of frustration for me and everyone I know.
Then I discovered Spoon Theory.
Coined by Christine Miserandino of "But You Don't Look Sick", spoon theory postulates the challenges disabled or chronically physically or mentally ill people face presents them with a limit to energy and possibilities to get through the various facets or life than others do. Ergo, every performable task has to be carefully thought out as to what is feasible for that person to do each day and how to deal with every possible scenario. Time and energy has to be thought out in a way many people would never think about. It's not being lazy, it's being strategic given a cap of mental and physical ability.
There's a lot to consider with spoon theory as it pertains to me. I have a lot of energy and capacity to do a lot of things that other autistics might not. I can withstand a lot of sensory sensations (I can wear a variety of fabrics, I can handle exercise as long as I drink a lot of water, I can stand hot weather with an abundance of fans or air conditioning, I love being hugged), I can care for myself (I cook, shower, clean, engage in self-care), and engage in a variety of activities like work and social activities. But I do often find myself limited by the amount of energy I have to do many of the aforementioned given the day and time. I've taken more mental health days from work and school than the average person, I feel limited in exercising my cooking skills, and I don't have the capacity to follow multiple conversations with multiple participants. And it manifests itself in physical weakness and mental and emotional exhaustion.
I'm trying the find ways where I don't exhaust myself doing certain activities. And it's only been recently that I've found any sort of success. If I have to move a lot of heavy objects over a long period of time, I have to take frequent rest breaks so I don't go into meltdown mode. When I train, I know that I can only jog two short laps without my knees buckling down. During large family dinners, I often need to leave the gathering to lie down and rest away from others so I can clear my head and let my stomach rest. All of this is done to make sure I don't exhaust myself, even if I feel like I need to do more. And I'm lucky that I have family and friends who understand and let me do this - no one wants to see me when my limits have been pushed.
As much I like to define myself by what I'm able to do rather than what I'm unable to do, it's critical for people to recognize other's limits disabled or otherwise. Not everyone has the same amount of ability to do things as others and recognizing that leads to greater understanding of others' experiences. If empathy is defined as understanding and valuing other people's personal perspectives and experiences, then understanding others' limitations is a great exercise in practicing empathy. And practicing empathy is critical to progressive growth in the world.
I'm definitely able to do a lot but I have a limited amount of spoons to do it. The more people understand and respect that, the more comfortable I and others will feel operating in the world at our own pace.
Tuesday, April 21, 2015
My Pop Culture Autistic Journey
I'm a self-described pop culture junkie. Ever since I was a child, I have been addicted to movies, television, theater, and music. I'd watch "The Wizard of Oz" and "Fantasia" ad nauseum, blast out the local pop music radio station in my room, glued myself to Nickelodeon's SNICK every Saturday night, and keep up with the latest musical theater - all encouraged by my parents and friends. I also read a lot of books, often over and over again, ever since I was three. (I learned how to read at that age as it was the primary method of teaching me to talk.)
It should be noted that this obsession with pop culture is not unusual for girls on the autistic spectrum. In fact, it's often labeled as a "special interest" for autistic girls. I have my doubts that's true across the board but it's definitely true for me.
With that in mind, I've been thinking about autism representation in the media. We don't really think of autism being very visible in media unless it's some parents talking about "the struggle" of raising an autistic kid, an autistic person "beating the odds" to excel at something, or some tragedy involving an autistic person. (I'll probably blog my feelings on all those things later.) But I recently came across a Flavorwire article about autistic and Aspergers representation on television and while most of the characters certainly displayed traits of ASD, very few were expressly indentified as autistic or Aspergers. And all of the shows the characters came from were within the last ten years or so. Waaaaaaaaay after my childhood years.
It should be noted that this obsession with pop culture is not unusual for girls on the autistic spectrum. In fact, it's often labeled as a "special interest" for autistic girls. I have my doubts that's true across the board but it's definitely true for me.
With that in mind, I've been thinking about autism representation in the media. We don't really think of autism being very visible in media unless it's some parents talking about "the struggle" of raising an autistic kid, an autistic person "beating the odds" to excel at something, or some tragedy involving an autistic person. (I'll probably blog my feelings on all those things later.) But I recently came across a Flavorwire article about autistic and Aspergers representation on television and while most of the characters certainly displayed traits of ASD, very few were expressly indentified as autistic or Aspergers. And all of the shows the characters came from were within the last ten years or so. Waaaaaaaaay after my childhood years.
Thursday, April 16, 2015
To Parents of Autistic People - Care for Yo'Self
One of the most repeated things I’ve heard in grad school is the phrase “self-care”. It is basically what you think it is – taking care of oneself. It feels like a no-brainer to take care of yourself to maintain a healthy lifestyle, but to practice self-care you have to be able to take a break from whatever is bringing you down and remind yourself you are worth the care. And I can attest that can be difficult when it comes to autism.
I completely understand how parents are stressed taking care of their autistic children. As an autistic child, I was acutely aware how my parents were constantly in my affairs from school to therapy and beyond. It’s a misconception that autistic people are not aware of the world around them - I could tell that my parents put a lot more work in me than they needed to for my siblings. I constantly felt they were constantly frustrated and tired with all the challenges I presented. It created a sense of feeling like a burden that I’m still fighting to this day.
It’s this feeling that made what a recent discovery so uplifting. I was talking with my mother a few weeks ago about her experience raising me and I asked her if she ever got people telling her they felt sorry for her. She said she didn’t experience that, following with some words I’ll never forget:
"I never felt sorry for myself."
I completely understand how parents are stressed taking care of their autistic children. As an autistic child, I was acutely aware how my parents were constantly in my affairs from school to therapy and beyond. It’s a misconception that autistic people are not aware of the world around them - I could tell that my parents put a lot more work in me than they needed to for my siblings. I constantly felt they were constantly frustrated and tired with all the challenges I presented. It created a sense of feeling like a burden that I’m still fighting to this day.
It’s this feeling that made what a recent discovery so uplifting. I was talking with my mother a few weeks ago about her experience raising me and I asked her if she ever got people telling her they felt sorry for her. She said she didn’t experience that, following with some words I’ll never forget:
"I never felt sorry for myself."
Monday, April 6, 2015
Wednesday, April 1, 2015
For Autism Acceptance Month, I'm Learning to Self-Accept My Autism
Each year, the month of April is "reserved" for autism. It's often used to raise awareness (autism exists - congratulations, awareness has now been achieved!) but I see a growing movement for people to accept autism as it is, appropriately named Autism Acceptance Month. There's more information on it here, but I like the idea of autism acceptance. It's a positive way to show people what autism is from the autistic perspective, thus perpetuating love, respect, and a real understanding for autism as a whole. In a world full of misinformation about mental health and disabilities, I welcome Autism Acceptance Month with open arms. We need to hear and value autistic people's own stories as a legitimate source of what autism is like beyond brain neurology and blue lightbulbs.
So it's with that in mind that I talk about my personal process of autism acceptance. Or as I call it, how I'm accepting being autistic.
Subscribe to:
Posts (Atom)