I Will Not Bow Down

(( NB. Please be advised, before anyone gets pissy, that I know that there is a small subset of neurotypicals out there who are not like the people in this post. There are some people and parents who understand. I’ve linked some of them on my blogroll, and they are all amazing people. But it’s a whole lot smaller subset than I’d ever thought, and I haven’t seen many of them lately. ))

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Postscript: An Open Letter

I would be remiss if I didn’t comment briefly on this: I got some truly lovely, thoughtful comments about my piece on Hannibal‘s Will Graham. I am so grateful for the kind words, and for those of you who have asked, I did tweet the link to Bryan Fuller. I also intend to snail-mail it to his and Hugh Dancy’s addresses, but beyond that I confess I’m at a bit of a loss as to how to get it out there. If anyone has any suggestions or connections that’s great, but until then I’ll do my best.

Representation in media is something that matters to me, and I’ve written in the past about it. There will also be new posts on general autistic matters coming, but there’s been some health scares and craziness in my house lately, so I have just not had the spoons. Watch this space, as they say.

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An Open Letter to Hugh Dancy and Bryan Fuller

Dear Messrs. Dancy and Fuller,

First off, let me start by saying I’m a big fan. I’m a morbid little monkey, and I’m a member of your surprise demographic – young women. I think Hannibal is beautifully shot, beautifully acted, and keeps me guessing. It’s darker than most network TV is these days, and I’m okay with that. I think we have to investigate the darkness of the soul in order to understand it.

But I’m also something else that you might want to know about. I’m autistic.

My original diagnosis was Asperger’s syndrome, but since the DSM V came out, autistic people have all been lumped into one Autism Spectrum Disorder category. Autism is a spectrum, so that makes sense – just because someone can talk, or type, or drive doesn’t mean that they’re ‘not autistic’. It means they’re a different flavor of autistic, so to speak. Personally, I can talk most days. I can type, as you can see. I’m still autistic. I still have non-verbal days; I still have difficulty reading social cues, I still have a near total-inability to read people’s facial expressions. I still need a little boost most days from people who are patient and understanding.

You should know that there’s a lot of misinformation out there, about autism, about autistics and their lives. And both of you have said some things that lead me to believe that you’re slightly misinformed.

Mr. Dancy. You’ve played someone with Asperger’s before – though the script for Adam was, in a word, problematic. When I read your interviews, also, I’m struck by your language. About Adam lacking empathy. About Adam being innocent and childlike and naive. I definitely appreciate that you made a point of saying Adam doesn’t represent all autistic people – but the thing that may be hard to grasp for someone who isn’t actually on the spectrum is that everyone else will think he does. Even today, when I tell someone I’m autistic, I get “Oh, like Sheldon (Cooper, from The Big Bang Theory)!” Or, yes, “Oh, like Adam!”

Except I’m not like Adam. While people like Adam exist, so do people like me. I know I have difficulties, and yes, sometimes I need help, but autistics can be whole people. Or they can be damaged in different ways. Like Will.

But yes. You commented at one point that you didn’t have to worry about bringing things to the role “like empathy and connection.” Or, discussing Will, you once said that Will has consciously adopted the “behaviors of people on the autistic spectrum” to protect himself.

Mr. Fuller, you once said that Will has the “opposite of Asperger’s.

I find both of those statements to be extremely odd things to say. Weird turns of phrase.

hann4Mr. Dancy, your interviews show that you have some insight into us. That’s why I’m so confused by your statement. Why would anyone ‘adopt the behaviors of people on the autistic spectrum’ if it wasn’t to protect themselves? We adopt these behaviors to protect ourselves. We’re autistic, and the world is not. It’s simply safer to be shy and reserved. It’s scary to try and maintain constant eye contact. It’s difficult to know when to speak, what to say. But I can’t imagine a neurotypical deciding to adopt these behaviors. Neurotypicals don’t often feel so threatened. Even with what Will has gone through, even what difficulties he already has in his past, his coping mechanisms wouldn’t be autistic unless he was autistic.

Why must you distance Will Graham from us? Especially if you understand that not everyone is like Adam, if you understand that there are absolutely autistics like Will? Intelligent, intuitive, crashingly empathetic? For heaven’s sake, Will stims.

And Mr. Fuller. What exactly is the “opposite of Asperger’s” in your mind? It certainly isn’t having a perfect grip on social cues; Will is very socially awkward even with his nearest and dearest. Do you mean that it’s a surfeit of empathy? So much empathy that you don’t know what to do with it, that you’re terrified that you can identify and even sympathize with people who do terrible things?

It is the very biggest myth about us, that we do not have empathy for other living souls. And it is the most pernicious.

There are some autistics who do not feel empathy. That much is true.

But there are many more who do. Who feel empathy in buckets, in rivers. We just don’t feel it in the same way you do.

My cousin passed away two years ago, from leukemia. She was 33 and it took her within a month – she was in remission, then suddenly she wasn’t, and suddenly she was gone. I didn’t cry for months – not because I didn’t miss her. Not because I didn’t feel the loss. It was because suddenly she Wasn’t Around Anymore, and I didn’t know how to do anything without her there. I had to relearn how to talk to some members of my family – my cousin used to be my translator, so to speak, instructing me on when I might have missed something. I had to look in other places for inspiration, for strength – she had gained a lot of weight and instead of hiding from the world, she took it head-on, daring it to mock her. I couldn’t shed tears because other steps had to be in place first. But someone looking at me would have found me cold, because I didn’t immediately gnash my teeth and rend my clothes. I still miss her, but now everyone has moved on.

Many of us are hypersensitive to external stimuli – light, sound, smell. But many of us are just as hypersensitive to emotion. Someone a little angry makes many of us coil in terror. When someone has died, we can feel it so intensely that we can’t scream and cry; we’re locked into a place where all we can do is lie blinking at the wall. Autism isn’t about lack of feeling for most. It’s about feeling so much, so fast, so sharply that we can’t fit the mold. We are overwhelmed. We retreat into our heads, and outside interaction and influence can be seen as problematic or even dangerous.

Now who might that remind you of?

If you’ve made a conscious, artistic choice to say Will isn’t autistic, Mr. Dancy, I respect that. But right now I think you think he isn’t autistic because you don’t know what we are. Or refuse to listen. You think empathy is incompatible with autism, and I and thousands – even millions – of other autistic adults and children are here to tell you it is not.

Mr. Fuller, the same for you. If you’ve made a choice that Will isn’t autistic for any other reason, that’s okay, too. But if you rule out autism because you think Will has too much empathy, you are misinformed. And I beg you to learn more.

aperitif 3

Because when I watched “Apéritif” for the first time, and saw Will? When I saw how he carried himself, how he avoided eye contact? When he looked at Alana with real gratitude because she was Known, she was Safe? When he went home to his dogs and surrounded himself with unconditional love, beings who would not judge him? When I saw the hand twitches, the movement of his arms? When I heard Will being described as having so much empathy it overwhelmed him? When I thought there might be someone just like me on network television, unapologetic and simply Autistic?

I cried. With joy.

Think about that.

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Powerfully Angry (warning: language)

NB. I talk about some ignorant and hateful parenting in this post. However, some parents are absolutely wonderful, invaluable parents as well as amazing examples of NT allies. Please refer to my sidebar for links to some of their blogs, marked with a (P).

So. Lately, I’ve been seeing a lot of talk on autism acceptance pages, on parent pages, about tone. About how we’re so angry, about how we have to be nice to people or they won’t listen to us, how “for the good of the movement” we have to engage on the ignorant person’s level.

The thing is, up to a point, those people are right. On a purely individual level, a lot of the time, if you get defensive and upset, people won’t listen to you. They should. But they won’t, because you’re “angry.”

Anger is a scary thing for most neurotypicals, never mind us autistics. We don’t know where it will lead most of the time. We as a society are used to people modulating their emotions, speaking in calm tones, and those who don’t are “loose cannons.” They’re “unstable” or “weird” (read: nonconforming). There’s a place for sadness, or for fear that is socially acceptable – funerals, or scary movies, or late at night as a child when you think there’s monsters under your bed. But anger never seems to be okay with the majority of people.

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I Am Not A Disease

I was having a discussion on a Think Progress article about vaccine truthers and autism (there is a post coming about the anti-vaxx movement; I just have to marshal enough patience to write logically and not just keymash in sheer rage). The upshot of the article was very good. It suggested that if people are looking for causes of autism, they might do better to look at environmental factors instead of ranting about vaccines.

However, I took issue with some of the article’s terminology. The last sentence of the article reads, “That could have a tangible public health impact, rather than allowing conspiracy theories to overshadow the complicated issues at play when it comes to this disease.”

That word.

Disease.

Autism is, by dictionary definition, a disease. That’s true. The Oxford English Dictionary identifies a disease as “a disorder of structure or function in a human, animal, or plant, esp. one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury.” Autism fits that definition if you accept the word “disorder”, which I will for the purpose of this argument.

However, as another commenter on the article stated very eloquently, we have to look at the social implications of the word “disease.” Let’s be honest with ourselves – when laymen use that word, they use it in a layman’s context. As something negative. As something to be eradicated. And when someone is described as “diseased”, they are no longer part of society. They are lepers. It’s okay to dehumanize the diseased, because in most cases, they wind up locked away, or dead, or in other ways no longer part of society.

The text of a Facebook-powered comment from a Think Progress article.

The text of a Facebook-powered comment from a Think Progress article which reads in part: “Gaslighting (that’s the SJW term) or strawmanning or autism’splaning (adopting another SJW term).”

And yet, when us “diseased” try to advocate for ourselves, we get charming replies like the one to the left. For those of you who don’t know, being accused of “‘splaining” something (I think it originally showed up in the lexicon as “mansplaining”, but I’ve also seen “whitesplaning” and “ablesplaining”) means that you are explaining something to someone who already knows in a condescending manner. The thing is, you can’t really do it if you’re not part of a majority. A person of color can’t “color-splain” anything to a Caucasian person; that would imply that the person of color held the position of societal power, and unfortunately, that’s not how it is. For this person to accuse me of “autist-splaning” took my breath away, because it’s blatantly disingenuous and just plain illogical, in addition to being rude.

It also, I admit, bothered me to be called a SJW (Social Justice Warrior). Social Justice Warriors are, frankly, insensitive jerks; they populate more of Tumblr and other social networks than I want to think about. The ones I’ve encountered have hair-trigger tempers, ready to jump down your throat the nanosecond you use a wrong term. I don’t want to do that, though I do want to educate. I’ve been made to feel like complete crap by SJWs too many time to want to do that to anyone. But at the same time, if someone’s going to get defensive the minute anyone even remotely tries to correct them, what the hell are you supposed to do?

If you read the entire thread of that article, I freely admit that I could’ve been more eloquent. Less ad hominem. (I’d rather be that than an SJW!) But my points are valid: Kristin Cavallari and Jenny McCarthy are hateful and dangerous, spreading misinformation about the effects of vaccinations and propagating the idea that it’s better to die from an easily preventable disease than be autistic. Autistics deserve respect and dignity; we are not diseased, and we are not some kind of plague.

The text of a Facebook-powered comment from a Think Progress article.

The text of a Facebook-powered comment from a Think Progress article which reads in part, “I’m sure you were treated badly by people. Get over it – it is part of our human culture to isolate those that are different.”

And then, of course, there’s the enlightened soul who posted this comment. “Get over it”? Really? In 2014? I should just “accept” that it’s human nature to treat the different like crap? I’m sure that’d be so much easier for people like this privileged fuckstick; he wouldn’t have to see anyone outside his comfort zone then. It’s people like this who make me want to be loud and annoying just to irritate him. If anything good comes out of this kind of ignorance, though, it does show me what I’m up against.

I’m not a disease and I’m going to make you see it.

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Some Days

Some days, your patience just runs out.

Some days, you aren’t in the mood to educate the twenty-third person who insists you aren’t really autistic, that you’re doing it for attention. Some days you’re over the ignorant person who sees you stimming and suddenly is done with their drink, running as if you’ll bite their neck and infect them with the scourge. Some days you give up, sure you’ll never find a job because despite your doctoral degree and sterling qualifications, no one wants to deal with your “quirks” and you can’t just become a Wal-Mart greeter because that long on your feet having to deal with people would cripple you.

Some days you see that another parent or caregiver has murdered an autistic, maybe killed themselves too. The comment sections on those articles are rough – if you look at the comments when a normal child is murdered, they’re united in throwing the parent into Hell (massive trigger warning for violence on that link!). But when an autistic child or adult is killed, you see apologism. They say “walk in the mother’s shoes” (massive trigger warning for ableism on that link!). [sarcasm] Cause killing us is a mercy, of course. [/sarcasm]

Some days you might go nonverbal – even us “high functioning” autists have those days. Some days your voice feels too small, so you don’t want to use it, or you feel too scared to even think about letting your little words fly against the overwhelming tide. There are other ways to communicate, but chances are, most people don’t know about them. There’s no money for AAC devices, for letter boards and iPads, for ASL tutors. [sarcasm] That’s not real communication anyway. [/sarcasm]

Some days you want to get involved, but can’t – because the leading organization in this country that purports to speak for us doesn’t want us involved. Autism $peaks has no autistic board members – the last resigned in disgust following Suzanne Wright’s Nov. 11 op-ed that described us as “lost”. We are not lost.

And then you see Congress “Combating” Autism. “Treating” the “national healthcare crisis.”

Has Congress “combated” anything you deal with on a daily basis?

I didn’t think so.

Don’t combat autism. Combat stigma. Combat fear. Combat prejudice and ignorance.

Combat those who think we need combating.

Because most days, I don’t have patience for that crap.

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The Destructiveness of Fear

So. Boycott Autism Speaks is sponsoring a flash blog with the theme of “Love, not Fear.” It got me thinking.

I was trying to come up with something snappy to say – something intelligent and witty, something quotable. But in the end, I kept coming back to the same thing: that we all, allistic and autistic, neurotypical and not, need to adopt this as a mantra, for a happier world.

Fear breeds divisiveness. From both ends of neurology.

Neurotypical people fear for us – good parents and allies fear society’s ignorance and cruelty. But some neurotypicals also fear us. I’ve seen it firsthand. Coworkers and potential friends and distant family members would view me like a bomb. How do I talk to her? Is she going to start screaming over something? What if she snaps and hurts me? Why does she flap her hands like that? She’s not normal.

It’s hurtful, and it’s dehumanizing to hear out loud. To hear fear in someone’s voice when you’ve done nothing to deserve it except be born and live your life. I hear fear in Suzanne Wright’s appalling words when she talks about autism like an epidemic – but it’s not fear for us. It’s fear of us. And I console myself with how empty her life must be – how much fuller and brighter it would be if she chose to love who we are instead of fear what we could be.

There is another side of the coin, though. Some autistics definitely fear some neurotypicals. Even when their neurotypicality is the only thing that connects them to the monsters of childhood, of young adulthood.

Some of our fears are absolutely justified. Some allistics – some fellow students, some coworkers, some caregivers, some parents – will abuse us, or “snap” and harm us. And be lionized, martyred and cast like Joan of Arc being saved from the stake in a disgusting display not seen when it’s a neurotypical child suffering.

But others – others do good. Some fellow students stand up for us. Some coworkers love to work with us. Some caregivers want the best for us. Some parents will fight to the death for us. It’s sometimes hard for me to remember that, with all that we see in the news, in internet comments, in our own families.

But I try to love, and not fear.

I want neurotypicals to love, and not fear.

The biggest myth I encounter as an autistic is that we are not capable of emotion or empathy. If you put aside your terror and your sadness, you might see that we are capable of great love. And in this day and age, we have to be fearless to give it.

I urge anyone reading – be as fearless as we are. Don’t be afraid of what we deal with or how we think. Love the person we can become.

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