Sunday, May 28, 2017

The "Normal" Versus The "Worthy" Autistic - A Response to "The Autism Matrix"

My autism seems to be a shock to anyone I meet. When I tell people I'm autistic, the most common response I get is "Really? I never would've guessed!" I want to believe that it comes from a well-meaning place of surprise, but I can't shake the feeling that it's slightly condescending to me. Autism affects people in different ways and yet we as a society seem to only accept a narrow affect as being truly autistic - you must either be a "quirky" personality easily fixated on certain subjects and have little to no understanding of basic social interactions or be completely non-verbal completely isolating yourself from people with little to no control over your physical actions. I'm neither of these things and seem to project a certain sense of "normal" where only the most attentive would identify something is notably different about me. That doesn't mean that my diagnosis is invalid, but rather I don't easily appear to be what people seem to think autism looks like.

Case in point, the Autism Society of San Francisco president Jill Escher recently wrote a piece for The Times of Israel (a Jewish Times subsidiary) attempting to make identifying how autism affects people "easier" rather than relying on problematic "functioning labels". In it, she maps out via a "matrix" where different autistic people would be based on things like IQ, social skills, verbal language, support needs, and more. The article has since been taken down from the Jewish Times from what I can assume was a barrage of angry comments disagreeing with Escher, but it still can be viewed on the Autism Society of San Francisco website here. There are lots of reasons why people find this "matrix" format troubling (my favorite pieces on it are written by my friend Christine and prominent parent advocate Shannon Des Roches Rosa), but I want to talk about one particular criticism that affects me greatly: the notion of the "worthy" and "needy" autistic.

Friday, April 7, 2017

Am I Thirty, Flirty, and Thriving Yet?

Come the 8th of April, I will enter my fourth decade on this planet we call Earth. The closer I get to that fateful day, I find myself thinking of the 2004 movie "13 Going on 30". In that thirteen year-old movie (ha), an awkward burgeoning teenager wishes she could be "thirty and flirty and thriving" and through the power of magical realism finds herself in a future thirty year-old self only to find what she wants as a teen isn't all that's cracked up to be. It's never been a movie I particularly enjoyed, but as I get older, the theme of wanting something for your future self and ending up in a place you didn't expect has been especially relevant to my life. What I wanted as a child didn't pan out and what I have now leaves me wondering how I got there and if it's the right place for me.

I guess you could say that as a kid, I too hoped I would be "thirty, flirty, and thriving". And while I didn't quite get what I wanted as a kid, maybe I ended up with something better.

Tuesday, November 22, 2016

Autistic Language: What "Functioning" Even Mean?

It seems to be universally agreed that what makes humans different from other animals is our language. All animals communicate, but human language goes beyond non-verbal methods like body language and physical gestures to using spoken and written words. Unlike physical communication, words have the most value in how people communicate our thoughts, actions, feelings, and ideas. We have all decided that above everything else, words matter the most.

It's with this concept in mind that I want to talk about the language surrounding autism. There's lots of ways to describe autism and how it affects people and as many different viewpoints on how autism is discussed in language and tone. I don't want to get into the various tones of autism discussion because I know that'll cause nasty fights that I want to avoid at all costs. But I do want to talk about certain terms used and what they mean in how autism is seen by the world. This will take a couple of posts as there's a lot to go into, so bear with me and my thoughts.

Please note that these posts only reflect my personal views on autism language. I'm not going to dictate how other people should talk about autism because A) I'm not the boss of everyone, and B) people can get really angry when they're told what to do. I just want to explain how I feel about these terms and I hope that I can be respected for feeling that way. I won't tell you what to do or feel, so please do me the courtesy of not telling me what to do or feel.

Got that?

Good. 

Now let's talk "functioning" labels.

Monday, June 27, 2016

Fishy Feels - How "Finding Dory" Does Disability Right

A few weeks ago, I wrote about disability in the media (or rather how disability is portrayed as a tragedy by media). In it, I said that stories about disability are mostly about how a disabled person affects others, and how all involved parties "struggle" with it and have to "persevere". And I wrote that the remedy to this is to tell stories from the disabled character's perspective and promote it like whoa.

I honestly didn't think that I'd see that kind of story would be done so soon. Nor would that story be hugely successful. And nor that that story would come from, of all places, Pixar.


My first thought upon hearing "Finding Nemo" would spawn a sequel called "Finding Dory" was the same as everyone else's - "Really? A sequel? Can't Hollywood come up with anything original?" It doesn't help that most sequels to movies tend to do nothing but spout the same story as the original without the original's magic and with nothing new to say. Even Pixar isn't immune to this rule: the sequels for "Cars" and "Monsters Inc." fell flat in comparison to their predecessors. And whenever a sequel happens to be good, it's because it expands on the first film and has its own story to tell.

"Finding Dory" succeeds for those reasons indeed, but it does something more. It tells of living with a disability and all the complications and strengths within it. And it did something that very few movies do - it made me profoundly relate to it and sob by the closing credits.

Why? To explain, there will be spoilers from here on out.

Friday, June 10, 2016

Me Before "Me Before You", Or Disability Doesn't Always Need to be Tragic

I'm not a big fan of sappy romantic dramas. While I will admit to being among the many who sobbed at the end "The Notebook" when I first saw it as a teenager, stories of people falling in love while something "greater" than themselves try to keep them from being together just feels tired to me. There aren't many ways to make this Romeo and Juliet narrative new and innovative, and the onslaught of these films in recent years (more often than not adapted from Nicholas Sparks books) just reinforce how tired this trope has become.

The recent entry into this genre, "Me Before You", initially looks the same. Boy meets girl, boy and girl fall in love, but will their love survive something neither of them can control? And like its contemporaries, it received mixed reviews upon release. But what makes this film different from its boring, tepid ilk is the "tragic" thing that complicates the boring couple's love:



The boy is a recent quadriplegic, and the girl is trying to prevent him from pursuing assisted suicide through the power of love.

*le sigh*

Monday, May 16, 2016

How Do You Handle Autism, Anxiety, and Depression?

Earlier this week, one of my favorite actors Kristen Bell revealed that she suffers from depression and anxiety. In an interview with "Off Camera with Sam Jones", she talked about how her mother told her at a young age about a hereditary serotonin imbalance in her family and taking medication to help ease the hormone. You can watch the interview here:



It was shocking to me to hear this from Bell. She's known for being a very bubbly and positive personality, which makes her one of the most likable personalities in Hollywood. To hear she apparently has purposely worked to cultivate this to compensate for her mental illness is something I would've never expected. But it ultimately made me love her more for her honesty and willingness to be open about herself.

And it particularly hit home for me because aside from being autistic, I too suffer from chronic depression and anxiety.


Friday, April 1, 2016

Despite Everything, I Don't Hate April

The month of April has always held a special place in my heart. Spring is fresh in the air, it's still early in the year but not too much so, and the weather is pretty cooperative in the not-too-hot-but-not-too-cold way. But it's most likely due to the fact that it's my birth month, as I was born on the eighth. In fact, April holds a lot of birthdays of people I love - one of my closest friends' birthday is four days before mine, my father's is towards the end of the month, and my late grandmother's was six days after mine. It's always been a month of celebration in my life, and I wouldn't have it any other way.

But since becoming more involved in the autism world, I see people who don't like April as much as I have. That's because April has somehow been deigned "Autism Awareness Month" and with it comes a lot of feelings on how it's handled. But in spite of all the issues that come with the concept of "autism awareness", I honestly can't bring myself to hate April because of it.

I know that looks like a controversial statement from an autistic person. Just hear me out.