autism in media

An Open Letter to John Elder Robison

Dear Mr. Robison,

We have a couple of mutual friends, or so I am reliably informed, and we share the same neurology. While I dislike the tendency of NT society to turn to you almost as a default when they need an autistic person to speak on something, that is not your fault. I’ve even read Look Me In The Eye and found lessons and stories in it that I’ve been able to apply to my own life, for which I am grateful. You write extremely well.



An Open Letter To Jim Carrey

Dear Jim,

Normally one uses surnames for people they haven’t met, but given the appalling way you’ve just behaved and the ignorance you’ve displayed, I don’t have enough respect for you to bother.

Let’s get down to brass tacks.

I am an autistic adult, and I am angry.


And I Am Telling You

I was going to try and be really highfalutin’ with this post. I was going to ask my roommate the English major about Lacanian theory and semiotics, and explain that. Then I’d make some allusion to the fact that we all perceive words differently, and it can sometimes mess up discourse on a fundamental level. Then I would tie it back to the fact that the word ‘disability’ is routinely interpreted as something hugely dire by the non-disabled, and explain that ‘disability’ is in fact a social construct. Then, to close, I’d make some quasi-profound point about how we could all do a bit better at understanding that we all have different perceptions.

But today is the Disability Day of Mourning, and I’m not going to do that.


A Defense Against Libel

I know it’s been a while since I posted. The reasons are about evenly split between life happening, and being threatened with doxxing over my Stapleton post. My life has calmed down somewhat since, but I still had to debate posting this. Eventually I decided in favor of posting it, because frankly, it needs to be said.

London McCabe was a six year old boy living in Oregon. His mother murdered him last week by throwing him off a bridge. After the murder, NBC reached out to “autism experts.” They found Dee Shepherd-Look, who is a professor of psychology at Cal State Northridge. She had this to say. (Very triggering, be warned.)

““I’m frankly surprised this doesn’t happen more often. These children are really unable to be in a reciprocal relationship and the moms don’t really experience the love that comes back from a child — the bonding is mitigated … That is one of the most difficult things for mothers.””

I and most of the autistic community was appalled. This is the e-mail I sent to her. -cec


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. We have if anything too much affective empathy and not enough cognitive empathy.

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.