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 It just seems to be easier to notice when a boy is antisocial and withdrawn with specialized interests than when a girl is.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.

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.

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?)

Diagnosed at Two, Told at Thirteen

You read that title right – I was diagnosed with autism when I was two but I didn’t know about it until I was thirteen.

Let me attempt to explain how this happened.

As detailed in my last post, I was acutely aware that I was different from others for most of my life. And from my childhood perspective, that difference was a bad one – I was easily provoked into meltdowns when I didn’t understand things, constantly under a more-than-average level of adult supervision, I had difficulty making and keeping friends, and I recall feeling ostracized by children and adults alike. This isn’t to say I didn’t have any friends or positive relationships with adults or kids– I made some good friends during elementary school, and my second and third grade teachers as well as my sixth grade humanities teachers were supportive and encouraged my love of history – but I still felt like I was inherently a bad kid because of things I couldn’t control. I would constantly ask my parents “what’s wrong with me” and they would say things like I just had a hard day and they loved me and things will turn out alright, but I’d never get a straight answer. I basically thought I was descending into madness.

Then when I was thirteen, everything changed.

I remember that day clearly – I’d had another incident at school (these were especially common in seventh grade, as some of my fellow schoolmates figured out how to push my buttons and make me explode-typical middle school interactions, as I am now aware). I was asking my mother that familiar “what’s wrong with me” question when we pulled up to our house, and she stopped the car, turned to me, and said the words that changed my life forever:

“You have autism.”

Why “Jumping”, Tho?

I’d been told a lot of my life I should talk about and write down my life experiences. My perspective, I’ve been told, is unique and I’m a good enough communicator for people to clearly understand and listen to me talking about my life.

Yeah, yeah – an autistic person who’s a good communicator sounds like the definitive oxymoron. But if I am such a person, then doesn’t that oxymoron no longer exist? */stereotype demolished*

At any rate, sharing my life story and perspective has weighed on my mind for a long time. And with that constantly in my head, I keep going back to my childhood perspective of the world. Namely, that I was always being watched. Watched and judged.

Ever since I was five I knew I was different. My earliest memory comes from about age two, but before kindergarten I thought my life was pretty normal. I thought everyone went to two preschools – a specialized one where I was taught to speak through reading and one regular run by my family’s synagogue – and took the bus between the two, had college kids take them on outings to the park/zoo/beach/wherever, and went to a place I called “Esther House” to play with a nice older lady (who of course turned out to be a therapist). But kindergarten changed all that. Suddenly I was in a classroom with a ton of kids not like me and they all seemed to have it easier than me. They didn’t get easily frustrated when not getting certain learning skills. They didn’t have meltdowns when said frustrations overcame their ability to cope and weren’t taken out of the classroom by adults to calm down. As the years passed, those other kids didn’t have an adult in the classroom specifically there for them because of the meltdowns and didn't have time outs where they had to be supervised in the administrative offices by the school's staff. And of course, those kids didn’t have a hard time making friends because of all the above and were often made fun of or treated badly by kids and adults alike because of it.

I’ll talk later about when I discovered I was autistic (believe me, that’s a story in itself), but all those things made me feel like I was under constant surveillance. Like everyone was scrutinizing and judging me. And that’s where the fishbowl comes in – I always felt like I was a goldfish in clear glass bowl with everyone the world pressed against the glass, waiting for me to do something "crazy". Something "crazy", like jump. And when I would inevitably jump, the world would scoff and go, “Of course she did that, isn’t that funny? Isn’t that crazy? Stupid crazy goldfish.”

An Introduction or I Refuse to Hide Anymore

Introducing oneself is a strange concept. It's essentially going up to a stranger, being all "HEY-O! I HAVE ARRIVED! LOOK AT ME AND TAKE IT ALL IN! I AM A PERSON WORTH KNOWING! I SWEAR YOU WON'T REGRET IT! sowhoareyouexactly?"

Nonetheless, it's a necessity of human interaction and so here I am. Introducing myself. And in order to properly do that, I'm going to have to disclose something major. Something important. Something that informs my life to a great degree. Something that takes a leap of faith, as there's no going back once I do it. Call it a "coming out" if you will (and I say this with the utmost respect to the LGBTQ community, as I don't know a better way of describing it).

Okay. Here it goes.

My name is Zoey. I'm from Los Angeles. I'm almost done with my Masters in Social Work at the University of Southern California. And I'm autistic.

...

Well that was easier than expected.

Why did I think that was so hard? I've spent a lot of my life not telling people I am autistic. Truth be told, I've spent a lot of time hiding the fact I'm autistic from people.

And with that last sentence, I think I answered my own question.

In my almost 28 years on the planet, I've gotten the sense that people in general are not comfortable with people who are different than them. Different makes people nervous, scared, uncertain - things people generally don't like feeling. And when people don't like different, they can treat different badly. A group of boys dumped a bucket of urine, feces, and cigarette butts on a boy with Aspergers in August as a cruel prank. A mother was recently sentenced to 10 to 20 years in prison for attempting to kill her autistic daughter. And in a horrific intersection of racism and ableism, a young black autistic man is currently in solitary confinement after being racially profiled and abused by police.

With all of that in mind, is it any wonder why I've been afraid to disclose my own differences?

And yet, my life experience has informed me that I shouldn't be afraid of telling people about my autism. Los Angeles is widely diverse, making almost everyone I meet statistically more open-minded than they would be if I came from a smaller town. And when I have told people (usually after a long period where I determined if I could trust them with the information), the response is overwhelmingly positive. I get a lot of questions, but not judgment. I recognize that's a rarity, but it should also give me hope that people aren't as close-minded and prejudiced as I assume they are. That people are open to hearing you and your story out if you give them a chance.

I'm done being afraid. I'm done with fearing judgment from strangers when I tell them of my autism. I'm ready to share my story and my perspective. I'm stepping out of that dank autistic closet (again, my apologies to the LGBTQ community) and embracing the light of being open of who I am.

I'm autistic. And that's alright.