We are here, we are here!

This morning, my inbox was flooded with news about how the rate of autism diagnoses may actually be twice than previously thought: 1 in 38.

I'm not a scientist. I'm going to let the good folks like Steven Novella handle whether this is a hiccup in data, a sign of over-diagnoses, a wider diagnostic criteria, or simply what it is seen as now: A sign that we've been neglecting some with autism who manifest differently from what's expected.

All I have to say is this: If this is true, then it is critically important, now, more than ever, that we fight for the rights of autistic people in all areas: schooling, healthcare, education, employment, equal participation, and anything else which may have been previously neglected. Because if there is 1 in every 38 people with autism, we are going to need all the support and understanding we can get.

We are here to stay, world of neurotypicals. You can't sweep us under the rug anymore.

Advocacy as a Mitzvah

"Where is my light? My light is in me.
Where is my hope? My hope is in me.
Where is my strength? My strength is in me – and in you"
- Rabbi Sherwin Wine

Before I get rolling on this, here's a tidbit from Wikipedia to help you stay on the same page as me:

The secondary meaning of Mitzvah refers to a moral deed performed as a religious duty. As such, the term mitzvah has also come to express an act of human kindness. The tertiary meaning of Mitzvah also refers to the fulfillment of a mitzvah.

Alright. Good. We got that out of the way. Goyishe readers, you're welcome.

What I am attempting to convey is what my work in autistic self-advocacy means to me as a Jewish woman. I'm not the first Jewish woman to have to come to terms with her autism, in fact, a cursory glance at the greats of autistic self-advocacy is filled with a great treasury of strong Jewish women with autism. I hope they count me as a peer, though I do not compare to them in terms of brilliance, strength, and perseverance. But, my autism and my Jewish background and Jewish outlook have influenced the way I approach my life, and that includes the way I approach my disability, and how to best defend myself when faced with opposition because of my autism. So, here's my story.

I'm not religious, really. If you were to dissect me post-mortem, my ghost would be utterly unsurprised if there were no spiritual bones found. But I maintain a strong grip on my identity as a Jew, even though I did not grow up in a religious household. As suspected fellow autie Albert Einstein put it:

"The pursuit of knowledge for its own sake, an almost fanatical love of justice and the desire for personal independence -- these are the features of the Jewish tradition which make me thank my stars that I belong to it.

That sums up just about everything I love about it, thank you, Dr. Einstein.

It is also what brings me to the title of this post. I explained already what a Mitzvah is, in this context, but how does that relate to autistic advocacy? Well, simply put, part of what I do and why I do it relates to the past, but most of it is firmly planted in the future. I came to be an advocate and an activist because of my past, because I was placed, against my will, amongst the damned. Many others were damned along with me, condemned to a life that was less fulfilling and lacking in encouragement towards goals and dreams, simply because they were like me, neurological rebels with various disabilities. Some managed to stoke up enough of a fire in the belly to escape the confines set down for them against their will. Others, for various reasons, couldn't escape.

What I do now is not only for those of us who escaped, it's for those who are still trapped, and, most importantly to me, for those who will come after me. A lot of the autism awareness schmaltz I dislike so heartily focuses on children, and that's part of the reason it rubs me the wrong way as an autistic adult. But that doesn't mean I don't care deeply about these children and their lives. But I tend to think more about what life will be like for them at the age I'm at now. Will they be bullied and harassed at work/school? Will their professors and bosses not comply with their wishes for accommodations? Will it be too overwhelming for them to enter the world of careers, colleges, and a new set of unyielding rules so different from those in childhood?

I have no real role models in the world of autism to look up to when it comes to issues like schooling and adult issues. I had books, I had people on television. But there were no people directly involved in my life who had autism whom I could confide in. My father, who is the likely candidate from where I inherited my autism, died when I was 13, and my mother is almost frighteningly neurotypical. For the longest time after my diagnosis, I craved a parent-or-older-sibling figure with autism, one whom I could look upon as proof to myself that my life was not being wasted, that I could in fact, make it on my own, as this theoretical role model did. Without sounding too egotistical, I hope that the legacy of myself and other autistic advocates will ripple out to multitudes of autistic people who will be entering adulthood a few years down the road. I already talk with autistic teenagers at the Children's Development Centre, and from the looks of their life stories, life hasn't gotten any easier for your average autistic since I graduated high school.

But it's my hope that they at least know, through their interactions with autistic adults like myself (I'm not the only one with speaking gigs) that it does get better if you persevere. It's heartbreaking to see an autistic youth give up on ever living a happy life, and I've seen it happen too often.

For me, helping ensure, either through direct, hands-on means, like talking to autistic teens and youth, or more bureaucratically, by fighting for equal access for autistic college students, battling eliminationist rhetoric in conversations about autism, and talking about autism with the credo of "nothing about us without us" that these kids get a chance at a better life than I had at their age, is a mitzvah.

For me, the liberation of autistic people from the confines holding them back now is a very Jewish goal. We are all too familiar with the pursuit of freedom from tyranny, and this includes the tyranny of disablism. This is not the only way to view autistic advocacy, but it is one way I look upon it, and it works very well for me.

Gah! April Articles Leave Autistic Bloggers Crumbling to Particles

I just looked at my calendar, readers, and I realized something: Apart from the wonderful revelation that Spring Break is two weeks away, that is. April is coming up, and April is Autism Awareness Month! Let the groaning begin!

Let's just get one thing clear: I hate Autism Awareness Month. I hate it I hate it I hate it. I hate all the shitty articles with a mouthpiece from Autism Speaks usually providing the information and insulting comparisons to AIDS, cancer, and diabetes. I hate the gaudy, ugly puzzle ribbon and puzzle motif that graces every piece related to autism. I hate those damn chocolate bunnies with the gold foil and red ribbon which gives a sliver of the proceeds to Autism Speaks.

But most of all, I hate how throughout the entire world of mainstream media on autism, they almost never once bother to even obtain the opinion of a single autistic person. Sometimes, an arbitrary mention of Temple Grandin is thrown in. Or there will be a special puff piece on how some autistics -gasp- manage to find employment and lead productive lives, and treating it like a special little miracle. I'll give them that, it is pretty much a miracle for it to happen when everyone goes out of the way to make you feel like a worthless outcast and doesn't bother to accommodate you on the workplace. But I digress.

April is on its way. There's no avoiding that. As much as I would like to take the month off from blogging, unplug my computer, and hide myself in a luxury cabin by a hot spring upon an isolated mountain with nothing but a bottle of sake, some LUSH products, a good book selection, and a supply of my favourite nibbles, I have work to do.

My mission this April: I'm not simultaneously blog and not blog about autism. I'm just going to transform this little space into a happy-fun-time about my life for the month of April. I'll take pictures, enjoy my last few weeks in Missoula, show off photos of my cooking, whatever. What's that got to do with autism, you ask? I'm autistic. Therefore, every action I take is related to autism somehow. It affects my entire being. And you bet that I am going to spend the month demystifying autism, transforming it from a peril felt by unlucky families who feel their lives slipping away, and I'm going to make it as normal and fun as possible.

April, Autism Awareness Month: Bring it on!

The difference between Autism Awareness and Autism Acceptance

If you're actively involved in autistic self advocacy, are autistic yourself, have an autistic sibling, an autistic friend, an autistic partner/spouse, an autistic child, or an autistic friend, you have no doubt run into an "Autism Awareness" event, either advertised on the internet, or gone to one in your community. They're usually marked by an emphasis on children with autism, a plethora of puzzle ribbons, and a decided feeling that it is not for autistic people at all, but rather, designed for relatives (read: Parents and guardians) of people with autism. These events usually don't take place in autistic-friendly environments, have loud noise, large crowds, and sickeningly bright and flashy décor as part of the package. Usually the speakers will be doctors, parents, representatives from charities, but rarely autistic people themselves. The focus of these lectures will typically be how to curb or mask autistic behavioural traits like stimming, the latest in ABA techniques, or sales representatives for chelating agents and alternative medicine.

Sometimes this isn't the case, but let's face it: Autism Awareness is so 20 years ago.

Back when autism was a relatively unknown thing, occurring in a scattering of families who didn't particularly talk about it publicly or bring their children out to play with others or integrate them into regular schools, an Autism Awareness event made more sense.

Nowadays though, with 1 in 100 of us having some form of autism, the spectrum being recognized as varying from nonverbal to chatterbox, and every teacher, caretaker, doctor, therapist, and babysitter knowing about autism, Autism Awareness doesn't make sense, either as a phrase, or as a marker for an event about autism. The misconceptions are still rapid and widespread, but Autism Awareness doesn't seem to be working towards rectifying the stereotypes. Since the events are typically put on by non autistics for non autistics, they do little to reach out to autistic adults who may be starved for the chance to enrich their lives with knowledge of their disability and resources, or even get a diagnosis.

But an event geared towards Autism Acceptance can make a fundamental paradigm shift in public events geared towards autism a reality. Autism Acceptance forces people to re-examine their prejudices, find out what it means to be autistic from an autistic person, and takes the focus off of curing and more on improving the quality of life of autistic people who need help now in building and maintaining productive, meaningful lives.

So, next time you see one of these events, I dare you to ask the coordinators, either in an email or in person, what they hope to accomplish with their event, and challenge them to rethink doing an Autism Awareness event, and gear it towards Autism Acceptance. Tell them what a difference it could make to reach out to autistic adults in their community by asking them to be involved with their project. Ask them to book an autistic speaker. Ask about putting it in a sensory-friendly environment or making a sensory friendly environment so autistic people won't be alienated from attending.

Or better yet: Put on your own. Start small and work your way up. You never know what will come of it.

Letter to D

This was inspired in part by my talk at the Children's Development Center. In the interest of safety, I will not reveal who D is, but I will say that he was there when I was talking to parents like his about autism, which D has.

Hello D,

A couple of nights ago, I was talking to moms and dads like your very own mom and dad. They were asking me all about people like you and I: My hobbies, my favourite foods, my dislikes, my favourite thing about myself, and what I think is the best possible path for them to take to raise kids like you, kids who are like I was at your age. You were off in the corner with your legos, and I felt like joining you and answering their questions while building a totally awesome fortress. But I sat at the table and just talked, while clicking my tongue occasionally, sighing, and rocking gently back and forth in my chair. Occasionally I cracked a joke.

When I was talking with them, I saw them smiling, laughing, and there was something in them that I was able to faintly detect, though I'm not so good at this type of thing: A mixture of relief and gratitude.

I think I know why they're grateful, D, but I can't be sure. I think they were glad to see me. See me there, dressed nicely, hair combed, but still wearing my totally comfy old scruffy black addidas shoes, mismatched socks, and rocking back and forth like I do. I was clearly like their own kids, but I was happy, content, and at ease (somewhat) in the world of adult conversation and adult responsibility. I had goals, dreams, and a tangible type of happiness, the kind that playing with those legos used to give me.

I think, more than anything, that's what they want for you, and their own kids. That happiness. For a long time now, they've been told that that's beyond your grasp, that your autism means that there's no hope, no future for you beyond living at home in your own filth and their shattered dreams. That's the image the media and not-so savoury folk have fed them about our autism. But that night, I could practically feel it break away. There was something different taking root there, and it was this idea that not only was happiness possible for you and I, it was all possible without having to force us into a way of life we were never meant to adhere to.

It's important that people like those parents know I exist, that others like me exist. When I was your age, I didn't know there was anyone like me out there. When I was your age, what I "was", would often be dubbed a mystery, a puzzle, or unsolvable. I had people call me horrible names and tell me horrible things. I've never managed to shake it off, and it forms a weight on me that sometimes makes my words, thoughts, and deeds drag along the ground, like a ball and chain. I know that this still goes on, and it makes me shudder and wince with a pain you'll grow familiar with as you age.

But I want a better future for you. Both myself and my parents want it. If the world took off its pity-tinted glasses and saw you do what I see you do, they'd be amazed. I love your intricate lego designs, towering high. I marvel at how you, like me,love to blow on cold glass and trace along letters and numbers in them. I'm amazed at your prowess with your finger as you write out these sums and words. But most of all, I love seeing you stimming quietly or not-so-quietly in the corner of the room uninterrupted. No attempts to jerk you out of it, no worries about how weird you look.

I love it because it's the world you created for yourself, and now, nobody wants to intrude in and deflate it. Never lose that world, D, it's your safe haven.

I promise you, I am going to do everything in my power to make sure that safe haven is yours to keep. I was luckier than others yesterday and today, and I want the very best of luck for you and all your friends. There's a little bit of me in all of you, and you all have something you share with me. Treasure it. And I'll make sure that it is seen for the precious gift it is, until you're old enough to protect it yourself.

Hopefully by then, nobody will be fighting to rob you of it though.

Leah Jane

Autistics Speaking Day

Today is Autistics Speaking Day. It was created as a reaction to an Australian group's "Communication Shutdown" in which they were requesting that people 'shut down' their facebooks to understand what it is like to be autistic. There are plenty of reasons why this is ridiculous, and plenty of other terrific bloggers have covered it better than I ever could.

But I'm going to add my own voice to the mix, because no autistic person should go silent when they feel the need to communicate their views.

Today, I did an interview for the local TV news station, to talk about a project that my local autism club, of which I am the spokesperson, was doing to bring about discussion on autism. On Wednesday, this piece will be continued, and on Saturday, it will culminate in us showing Temple Grandin, the HBO film, and having a discussion about autism afterwards.

Not one of the autistic members of the club has been silent while we've been planning this out. We've collaborated, created posters, pitched ideas off each other, discussed the possibility of Closed Captioning in the theatre, and put all of our heads together to create a project we are proud of.

All of this hard work would not have been possible had it not been for the assistance of the internet. We emailed, we designed PDF files of our fliers, and the reporter caught my attention via facebook messaging. It was actually via the internet that I discovered this club.

So, I have to ask: From my personal experience, how does it make sense to bring awareness to autism by shunning the very thing that opened up many an autistic person to new possibilities and friendships? It makes little to no sense in my brain.

And that is all I have to say on the matter.

Anxiety ≠ vulnerability, weakness, or incorrect thoughts

“I have come to believe over and over again that what is most important to me must be spoken, made verbal and shared, even at the risk of having it bruised or misunderstood.”

- Audre Lorde

One of the more difficult parts of expressing myself stems from my inability to communicate my thoughts fully when faced with hostile opposition. A lot of people, my own family included, seem to think that I thrive off of drama and near-theatrical displays of emotion, but nothing could be further from the truth. Confrontation, particularly that of the face-to-face variety, terrifies me. When I am faced with a person who is hostile to me or my ideas, I've been pushed to the point of an anxiety attack, being temporarily blinded, and having difficulty breathing. I don't find it fun or pleasurable to do so, it's a horrific experience I would not wish upon my worst enemy.

And yet, I keep at it. When faced with belligerent trolls or antagonistic souls, I type up my rebuttal, even as my fingers shake and my heart rate speeds. In the event of someone doing something similar face to face, I try and keep a sturdy, even voice, and continue making my point even if I am reduced to tears or end up involuntarily stimming to get rid of all the stress it causes. If I lose the ability to speak coherently, I type, or write down my opinion.

I've come to both derive great pride from this endurance, and a sense of curiosity as to why I keep at it. In many of the cases, my tears and anxiety are taken as signs that my opinion is subjective and not worth considering, even on subjects which I have the most informed opinion on in the group, such as, surprise, autism. I'm told that I'm "weak" and "hysterical", told that I need to consider things more objectively, and addressed with condescending pet names like "Sweetie" or "my dear". At points like that, I wonder why I do not stay silent, fearing that my words my hinder my position more than they would help.

Such thoughts are, however, poison to progress. If I were to remain silent, it would be assumed that I have nothing to say, or worse, that my opinion doesn't matter. One of the core mottoes of disability advocacy that I have absorbed is the ever-profound "Nothing about us without us." In a world where the majority of the international conversation about autism happens without the input of autistic individuals, this thought is downright revolutionary. I'm not as eloquent of a speaker as a neurotypical doctor or a neurotypical parent of a child with autism. I don't have the charisma and stage presence that is usually demanded of public speakers, and since I am completely immersed in autism, rather than being one or two degrees removed from it, I am bound to have an emotional reaction when that part of me is so fundamentally misunderstood, skewed, or abused. Contrary to popular reports, I am, after all, only human.

This idea that we cannot get involved in the debate because it is too personal to us, or that we "can't look at it objectively" or because our emotions are too strong, is ridiculous and hurtful. It implies that there is such a thing as an objective observer, when, regardless of the subject, that's near impossible to achieve. Humans are flawed, biased beings, and in the conversation about autism, you cannot be objective. Objectivity is simply a better sounding alternative buzz-phrase to "ignorant" or "uninterested in the repercussions these decisions will have for people."

My tears and my panic attacks are not weakness or a sign that my opinion is not valuable. They indicate that I have a long history with this discussion, and I have opted to continue the dialogue, even at the cost of my emotional control, because it matters to me that much. That's all.

We worry about what a child will become tomorrow, yet we forget that (s)he is someone today. ~Stacia Tauscher

A big reason behind my entering the world of blogging was because I felt that the internet was the ideal way to get across a message that had been systematically ignored, mocked, or silenced out of the public debate on autism: That human beings deserve a basic amount of dignity, respect, bodily and intellectual autonomy, and independence, and that people with autism are human beings.

The public discourse about autism rarely focuses on this simple, frequently denied idea. We're almost never included in the discussion, except on occasions when we are paraded out in dunce caps to show off our pitiful existence in order to garner sympathy for our parents and caretakers. But what really gets me is that the most often provided targets of this pity parade are children. O, won't someone think of the children?

In my experience, the anti-vaccine camp is the most guilty of all the parties in performing this stunt. A particular example that has come to my attention recently involves a fellow referring to his child with autism as "damaged", in a Canadian newspaper. Owing to some interesting circumstances, I'm choosing not to name the paper nor the letter writer, for the safety of myself and my loved ones. But when I read his letter to the editor, I was instantly reminded of other examples of this. Jenny McCarthy's son, before his autism diagnosis when he was a "Crystal child", during his diagnosis and alleged "cure", and after it was revealed he never had autism at all. The children on Oprah Winfrey, squirming uncomfortably as they were held up by their mothers as an example of the "damage" vaccines had done to them, and countless other examples leap to mind.

It's not just the fact that they are humiliating these children in the public sphere that is problematic, or insulting them in front of all, with words like "empty", "husk", "broken", "sickened", "damaged", "stolen", "near dead" and "ill" being liberally applied. The very fact that children, particularly when it involves nonverbal children, are being used as pawns to advance the political/social agendas of adults is downright sickening. Children are not the property of their parents, to be displayed at their whim, or used as a bargaining chip in an ideological debate. They are individuals, and yet, their freedom and their power to decide their destiny is often marginalized due to the wishes of adults who hold power over them, whether it be parents, teachers, or caretakers. Especially concerning disabled children.

The reason that I am here today, writing this, is because my mother and father didn't use my neurological differences as a battering ram to force their viewpoints onto other people. I was not a trump card, or any other sort of metaphor or tool to them. I was their daughter, and their priorities to me were to protect, nurture, and respect my growth. Autistic children grow up to be autistic adults. But we cannot be happy, whole grown ups with autism if we grow up under the shadow of people who consider us to be broken, diseased, or political bargaining chips.