Monday, December 7, 2015

A Very Merry Autistic Holiday?

It's no secret that large gatherings of any level can be incredibly overwhelming for those on the autism spectrum. There's so much happening on both social and sensory levels that it gets stressful just thinking about it. There's the sheer amount of people in the immediate vicinity, the high expectation to talk to all of them in the right way, the preparation of the event in question, how to present's all kinda much for anyone to handle. And if you're autistic, it's downright terrifying.

On top of being autistic, I have a ton of social anxiety. While it looks like I can increasingly handle myself well enough in group settings, I'm riddled with fear that I have no idea what I'm doing. Am I connecting with enough people? Am I engaged enough in the conversation? Am I hogging conversation too much? Am I maintaining the appropriate amount of eye contact? Nodding in the right places? Truly listening to people? All these things people take for granted requires a tremendous amount of thinking and planning, and it's so overwhelming just writing it gives me the shivers.

And what's a hallmark of the winter holiday season? Social gatherings, particularly holiday parties and family time. The two most stressful situations for almost anyone, let alone for someone who innately has trouble socializing to begin with.

Sunday, November 1, 2015

Autism Does Speak, But Who Exactly Is Talking?

I'm relatively new to the autism world. Having only recently begun to accept my diagnosis, I can't claim a long history of sharing my autistic life story let alone advocating for myself on a large scale. And sharing my diagnosis with people is still somewhat tough for me - I don't know whether or not they'll A) believe me, B) not believe me, or C) judge me harshly for it. I'm playing a brave but dangerous game in disclosing my autism because I don't know what the outcome will be. And if there's anything I fear most in the world, it's uncertainty.

I should feel like this is a baseless fear. Life has taught me that when I tell someone I'm autistic, they tend to take me at my word. I'm not entirely sure why this is - is it because I come off just quirky enough for someone to think something's up with me? Is it because I've developed enough language skills to pinpoint my condition? Am I perpetually surrounded by liberally-minded people? Or is it because I've come up with a basic script for explaining my autism:

"I'm autistic. This basically means I have trouble socializing, looking people in the eye, and can be an overall socially awkward penguin."

Whatever it may be, it's seemed to work out well for me. My entire family knows and has been supportive of me and my efforts. My friends are all eager to learn from me about autism and show complete understanding. And most remarkably, I've gotten opportunities at work because of my open disclosure of my diagnosis - I write for my workplace's blog, participate in community meetings around laws and services affecting autistic people, and have recently joined and publicly presented on behalf of my local regional center's Board of Directors. To say I've gotten extremely lucky is an understatement - I've largely been met with nothing but support for being autistic. And I'm forever grateful that people in my day-to-day life presume that I know what I'm talking about when I talk about autism.

So why is this generally not the case in public conversation about autism?

Thursday, October 22, 2015

Neurotribes Made Me Emotional, And That's A Good Thing

I may be autistic, but I'll be the first to say there's a lot I don't know about autism. My recent forays into learning about autism and the wider autism community have shown me that there's a ton of things that explain a lot about myself (my quirky habits, my abhorrence of change, my ability to get emotionally overwhelmed) and how much I have yet to know about autism as a whole. The more I explore on the Internet, in books, and in relating to other autistic people, the more I get invested in the subject.

So when a friend told me she attended a TED Talk conference where one of the speakers talked about autism, I was beyond intrigued. For months I waited impatiently for the talk to make its way online and when it was finally uploaded, I found something incredibly unique - someone who looked into how autism was "discovered" and how it came to be perceived.

Watching this got me intrigued. There's plenty of accounts and blogs detailing about what it's like to be autistic,  what it's like to parent an autistic kid, and the many scientific studies into what autism actually is, but not really much of a history of autism. I probably mentioned here before how I'm a history aficionado so of course this quickly became a favorite video. And when I found out this presenter, science reporter Steve Silberman, was coming out with a book on autism's history, I pre-ordered it as fast as I could. In a world where autism is discussed in either cold clinical terms or overwhelming emotional rhetoric, this posed an alternative view I desperately wanted to see - an objective look at autism by examining its historical roots.

Saturday, September 19, 2015

There's No One "Right" Brain in Neurodiversity

Growing up autistic in a non-autistic world often meant feeling perpetually alone. Once I knew I was different, I felt separate from everyone else and nothing would ever make me like anyone else.  I felt no one would ever understand me, much less help me shed my shitty self-esteem. If no one else was like me, how could anyone "get" me? And no matter what I was ever told by anyone, I felt that being autistic was akin to being lesser. Being autistic meant being more trouble to everyone else. And worst of all, being autistic was wrong.

In other words, I really, really wish I knew about neurodiversity a lot sooner than I did.

Saturday, August 15, 2015

The Hesitant Anglophile, or How England Helped Me Come Into My Own

I don't think it's a stretch to say Americans have longstanding obsession with the United Kingdom. It probably comes from the fact that the US was one of their former colonies and the first to fight them for independence, but we've never truly separated ourselves from the UK. Our histories are intrinsically entwined and we've always been dependent on establishing some kind of alliance together, for better and for worse. And if Hollywood trends are anything to go by, the next generation of popular actors and shows are coming exclusively from the British Isles. America has British fever, and it's probably never going to go away.

I cannot claim to be exempt from this rule, as the title of this post suggests. Ever since I was a child I have attempted to perfect the golden standards of the British accent. (Last time I checked, someone told me I sounded more Australian than English.) I watched Monty Python and Eddie Izzard on repeat throughout my teen years. I have an unhealthy obsession with British television from Doctor Who to Luther to My Mad Fat Diary. Many of my favorite actors, singers, and bands are British (including my celebrity crush, who I'd rather not name here). I've always been fascinated with British history as the sort of real trendsetters of Europe - particularly the Tudor era where Henry VIII and his descendants pretty much began modern England with petty marriage politics and paranoia. Many of my favorite plays come from England, from Shakespeare to George Bernard Shaw. I can't escape it - I will forever be fascinated with the United Kingdom.

The key world here is "fascinated". Whenever I hear someone say they're an Anglophile, I generally find that they think the sun shines out of the UK's ass. And if life has taught me anything, the grass is always greener on the other side. I recognize the United Kingdom has some serious issues - I don't understand how anything gets done in their parliamentary system, there's major class divisions affecting their current political and cultural landscapes for the worse, and they gave us Fifty Shades of Grey. No place is perfect, just as no one can be perfect themselves.

That all being said, I still adore the United Kingdom. And the reason why is that life has given me two major opportunities to love the nation - a theater partnership with a British theater school and a semester aboard in undergrad. And those experiences have truly helped me come into my own.

Monday, July 27, 2015

A Spectrum of Highs and Lows in College: Accommodation, Education, and Socialization in Undergrad

I left my previous post about my college career in a second start to school. The first six months of undergraduate education was spent on medical leave pending adjustment to the academic and general living rigors of higher education. It was not how I wanted to spend the majority of my freshman year, but it was what it was. It forced me to re-evaluate what I wanted and what I wanted was confidence to prove I could handle college. So I returned to northern California with a steely determination to make it through upper academia far from familial support and create the best undergraduate experience possible.

How did I do? Pretty damn well considering that previous hiccup.

Monday, July 6, 2015

The "Unlikely" Combination of Autism, Social Work, and Empathy

I almost ruined this past Thanksgiving because of a news story.

The day itself was fine - all the guests showed up, the food was good, nobody got in each others' faces about hot-button issues (a miracle considering the Ferguson protests dominated the news cycle at the time), and I managed to get along with everyone perfectly well. As far as family events went, it was a good one.

Bu after the meal was over and the guests left, I checked my Tumblr feed and saw a  story about two British policemen facing charges for chasing and assaulting an autistic Pakistani man.

My entire demeanor changed from being okay to sobbing beyond belief. I couldn't believe the cruelty these men had afflicted on a person I didn't even know. That story combined with the Ferguson coverage made me upset at people's cruelty and it all spilled out in tears. A family member found me crying and while she understood how I could be affected by such a story, she was perturbed that I would let a news story would make me break down.

In short, I may have let my empathy take over to the point of unhealthy display.

Monday, June 22, 2015

A Spectrum of Highs and Lows in College, The Rocky Start

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.

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.

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.

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.

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."

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.

Monday, March 2, 2015

Autistic Girls Are Apparently An Anomaly

When I was diagnosed at the age of two, the doctors seemed to be unusually taken with me. I presented a unique case for them - I tested incredibly high on the IQ test administered to me and most importantly was (and still am) female. In 1990, it was largely assumed autism was exclusively present in boys who bordered on or were mentally retarded. I can only assume this was the reason they wanted to hospitalize me for a month for further study - smart autistic girls apparently are a rarity.

For the record, my mother refused to let them do that. I cannot be more grateful for that decision -  I already begun to bond with my mother and would have missed her.

In fact, it's still considered a rarity. Boys and men are four times more likely to receive an autism diagnoses than their female counterparts. It just seems to be easier to notice when a boy is antisocial and withdrawn with specialized interests than when a girl is. Whether that's due to neurological differences or general societal expectation, it's created the image of autism looking like a little white boy.

Tuesday, February 3, 2015

Remembering My Grandparents, or What a Good Ally Looks Like

I started writing about a myriad of topics for this month. I started pieces on accommodations, on learning autism-specific terms, on the troubles of labeling, special interests, etc. I didn't quite know what to put up on the blog so I began writing almost anything I could think of. (Don't worry, those pieces will see the light of day - I promise.)

Then at the beginning of January, my paternal grandfather died.

This wasn't exactly a shock to me. Zadie (said grandfather) hadn't been in great health for the past year. And he had been in hospice for almost two months, so it really was just a matter of time before he made that trip to the Spirit in the Sky.(TM) And I had made many a visit where I told him how much I loved him, said my goodbyes, and he was able to respond, telling me he loved me back and always would.

I knew that his departure day was coming. I just wasn't prepared for it.

There are many articles about autism and grief. The Thinking Person's Guide to Autism has a particularly good one worth checking out. But this post isn't going to talk about the psychology or mechanics of how autistic people grieve or face loss. I don't feel that I have any real authority on that, as grief and loss manifests itself differently in people, even across the autism spectrum. No two autistic people are the same.

What I want to talk about is my grandparents' unwavering support for me as an autistic person.

Friday, January 2, 2015

So This is the New Year or Learning to be Autisticly Open

Last year was not my easiest year. I had my challenge in many areas – love, driving, school, living independently – but none has been more challenging than being open about my autism.

It started with a school project. I was taking a class on social work for large-scale social change and the final project was a presentation addressing a grand social challenge and proposing some methods of change. I chose to address providing work and school opportunities for autistic young adults, as services for that population are largely unmet (50,000 people on the spectrum turn 18 every year in the US). It was a subject that hit close to home, as I didn’t know where to turn for support when I left high school almost a decade ago. God knows I still feel I need a lot of help transitioning into adulthood.

Throughout the semester, I began to wonder if disclosing my autism diagnosis to the class (and later the faculty at the final presentation) would help me give a more rounded and effective presentation. It was a weighty decision as in the past I had selectively told only a few people I felt I could trust. There’s a lot of pressure on autistic people to present themselves as “normal” (whatever the hell that means) and I wasn’t sure how people would react to a disclosure of my diagnosis. And I’ve constantly been afraid that people would hold my being autistic against me. I have long believed we live in an ableist world, and that people often don’t take kindly to those different from the norm. I had mini nervous breakdowns over the decision and almost dropped the class because of it.

In the end, I stayed in the class and I disclosed my autism in my final presentation. My professor, classmates, and faculty expressed admiration at my openness and commended me for a great presentation. And yes, I got an A in the class.

With that experience behind me, I started to think about the value of being openly autistic. I haven’t had any bad experiences since I started telling people about my being on the spectrum (something that still surprises me) and being able to be honest has been kind of freeing. Before last year, autism was something of a personal burden – I was Sisyphus pushing a giant autistic boulder up a hill, trying to prevent it from rolling down on top of me. I was so frightened of judgment and so ashamed of being different and certain that I’d be seen as a problem rather than as a person. But after that presentation, I began to see that there was a benefit in being open – I didn’t have to lie or hide, I could advocate for myself, and I could share my experiences and perspective to demystify what people think autism is.

I don’t have to be Sisyphus, or at the least I can let my boulder roll down without fear.

(Oh hey, a metaphor! Weren’t expecting that, were ya?)