Pro-neurodiversity, pro-vaccines, pro-disability rights, anti-cure.

Now Katy doesn't want to live in Smithton anymore.

Wednesday, March 23, 2011

Are you sure you're autistic? Because I can't tell.

Another trip to the doctor, my tenth or so since January.  It had been a long time since I’d been in this office, well over a year since they’d seen me.  The nurse in the office was always hyper, cheerful, and bubbly, and usually made me laugh.
She was taking my blood pressure when she noticed my purple hair.  I told her I’d dyed it that way when I was a teenager, but let it go red (as it had been when she’d last seen me) so I could find a job.  Now I had decided that since I wasn’t going to get a traditional job and wanted to do autism advocacy, I was okay to dye my hair purple again.
“Well, that’s great!” she said enthusiastically. “And I’m sure those kids could use some visual stimulation.”  She went on a bit about autistic children needing help.
“Um.”  I bit my lip.  I was offended, but bad at confrontation, bad at explaining why I was offended.  I’d said advocacy, not working with children, and the assumption seemed to be that the only kind of work you could do with autistic people was with small children who desperately needed help (probably from normal neurotypical people who were saints for working with them). *
Obviously she didn’t mean to offend me, and I knew that.  It’s not that she was a bad person, or that she was trying to be rude, but the assumptions are some I see often, that seem to slowly eat at me.  And her intentions didn’t change the wrongness of what she’d said, or the fact that it hurt my feelings.
I chose my words carefully.  “Actually, it’s not working with children.  It’s like, disability rights stuff.  Before I got sick I was trying to start an Autistic Self Advocacy Network chapter in St. Louis.”
The nurse made a strange face.  “Disability rights?”
“Yeah.  I’m—actually autistic.”  I drew a deep breath, not able to read her expression to know what variation of a semi-offensive statement was coming next.
“Oh, you’re autistic?  Are you sure?”
I released the breath.  “Yes.  Yes, I am sure.”
“Well, honey, I can’t even tell!” she said brightly. 
She said other things, and I gave monosyllabic responses, too distracted and fearful now to be polite.  The nurse had done to me what several people have done.
People seem confused as to why I (or any other autistic or otherwise disabled person) would find that offensive.  It’s hard for me to explain in the moment because I need time to prepare that kind of explanation, and it deals with several different levels of ableism.
The first question, “Are you sure?”, may seem like a very logical question to some neurotypical people when speaking to people with mild autism.  It may not seem offensive to them when they use it, but it really is.  Why?  Because yes.  YES, I am fucking sure.  You may have to ask that question of yourself, “Am I sure she’s autistic?” but to me, the person who actually has autism, it’s something I live with every day and not really something I have to sit and wonder about anymore.  I did that wondering years ago, and I am over it the “Am I autistic or not?” stage.  If I wasn’t, I wouldn’t say, “I’m autistic.”  It was a really difficult conclusion to reach, but there is no longer any question in my mind that I’m autistic.
I realize that you weren’t sitting there with me when I was two and my mom was calling child psychiatrists, when I was six and one finally agreed to see me, throughout my childhood and teen years where it was very obvious something was wrong but we didn’t know what.  I realize you didn’t see the doctors give me the news, see the fit I threw, see the slow process of admitting I was autistic and discovering what it actually met.  I know you don’t realize what having autism is like for me.  But that doesn’t mean you get to ask me whether I might be mistaken.  (Unless you’re my psychiatrist or psychologist or something, but they’ve never asked me if I’m sure.)  You’re implying, by asking if I’m sure, that there is a chance I am so stupid I think I’m autistic when I’m actually not, or that you doubt I actually have the disability that I have.  The tone is often incredulous.  People just can’t believe that an autistic person could be like me, which is offensive in itself, and that really ties in with the statement they make when I inform them that I am sure I’m autistic.
You can’t even tell that I’m autistic?  I kind of figured that when you asked the first obnoxious question.  Now you’re again calling the legitimacy of my disability into question, again questioning whether I am capable of understanding whether I’m autistic, but something else is going on too. 
You can’t tell?  Why not?  Obviously I don’t expect anyone to be able to identify autism by sight.  I don’t expect every person to be an expert.  But what you’re saying is you expect autistic people to look or act a certain way.  That is so extraordinarily presumptuous.  I don’t conform to your ideas about autism because your ideas about autism are wrong.
My disability is a huge and undeniable part of my identity.  So it hurts when people say they can’t tell I’m autistic.  Which is funny because if someone said, “Oh, you’re black?  I can’t even tell!” most people would probably think that was offensive.  And I’m betting if I responded with, “Oh, you’re not autistic?  I can’t even tell!” that would be seen as rude.  In fact, people who are mistaken for being disabled when they’re not are often massively offended. 
Why is okay to say “I can’t tell” to an autistic person, but it isn’t allowed when the situation is reversed or it isn’t allowed when referring to other unnoticeable identities?  I feel like it’s just another example of how disabled people are seen as less human and less liable to be hurt than “real” people. 
It’s also an example of how a disability not being noticeable is supposed to be a compliment.  What the nurse was saying when she said, “Don’t worry, I can’t tell” was partially that although autism is bad, it’s okay for me because she can’t tell that I have it.  She’s actually saying, “Lucky you, you’re not as bad as other autistic people because your autism is not obvious.”  That’s so not a compliment!  You’re actually insulting me (and all other autistic people), and at the same time belittling my experiences as an autistic person.  In fact it’s so offensive that I’d rather someone say, “Oh, that makes a lot of sense then,” admitting that they actually noticed my disability.  I realize that kind of honesty is taboo to many neurotypical people, but at least it’s not offensive.
The appropriate response to someone telling you, “I’m autistic,’ is to say, “Oh, okay.”  And if you say something offensive, please apologize and I’ll forgive you.  If you aren’t autistic or aren’t close to anyone who’s autistic**, it’s probably best to assume that the person who is talking to you, who says he or she is autistic, who actually has the disability, probably knows way more about it than you do.  The message you should be taking away is that maybe autism doesn’t always present how you thought it did.  Maybe you should think about researching it if you’re interested.  But no matter how surprised you are, it is never okay to tell someone that they don’t look or seem autistic, or to ask them whether they actually are when they’ve already told you they are.  This goes for other disabilities as well.  No one deserves that, and the fact that you didn’t mean to be a jerk doesn’t mean it’s not a slap in the face.
So nod understandingly or express your surprise in a non-offensive way***, or do anything else, but please for the love of God, do not do what that nurse did.

So I said nothing to the nurse.  I could have.  I sure as hell wanted to.  But I’m a coward.  I felt horrible and scared and sick, and my mouth froze and it was hard to say anything.  I knew if I said anything I would be the trouble maker, because it’s the duty of disabled people not to hurt non-disabled people’s feelings by pointing out that they’re ableist.  I knew she didn’t mean to offend me, and I knew it didn’t matter.
That was three days ago, and every day since I’ve been plagued with irritation that I didn’t say or do anything.  Because I didn’t correct her she will never learn that she hurt me, or why it’s offensive to say things like that.  She got to go on her merry way, completely unaware of her mistake, and I am left to deal with the consequences.  Because this is not the first time this has happened.  It will happen again, and each time it happens it builds up a little more in my system and gets more annoying.
I can see how someone who is unaware of disability rights issues could look at this and think I’m just too sensitive.  But it’s part of a bigger freaking picture.  The reason oppression of disabled people happens is because ideas like this are floating around in the air, in one form or another.  Most people know that racism very rarely looks like swastikas and white hoods.  A lot of times discrimination is in the way we talk about people, as if they’re (even by no fault of their own) lesser than us, that they should be subject to greater scrutiny, that we’re normal and they’re not.  This more commonly occurs with very minor interactions like the one I had with the nurse.  To her the idea that autism is an acceptable neurology, the concept that someone might actually like being autistic or would be offended by someone saying, “Don’t worry, I can’t tell,” was so radical that she said those things to me and expected me to be either happy or okay with it.
Racism, sexism, homophobia, transphobia, religious persecution, ableism…all of these things start on the small levels where the nurse was with me, and they should be fought on that level.  I think it’s most important of all the fight discrimination on this level, because it’s the level we often overlook in favor of more obvious racists and ableists to point our fingers at.  But you can’t fight those people who know they’re discriminating and don’t care.  You can change how people think about things at the most basic level, and that can stop it from evolving into, “Well gays shouldn’t marry” and “Well, disabled people just need to get off their lazy asses and work.”
I am ashamed that I didn’t stand up for myself.  I’m embarrassed that I didn’t call out the woman who, however well-intentioned she was, discriminated against me and made me feel outcast.  Because if I can’t face these demons in my own life I can’t understand how I can expect to help other people fight.  And I’m going to have to work on that.  A year ago I was even more fragile than I am now.  I never wanted to confront anyone about anything, and people walked all over me.  I’ve come a long way and I can see I have further to go.
I’m not giving up yet.  So this is my response to the nurse and to everyone else who thinks asking those questions is acceptable.  She may never actually see it, but dammit, I have to say it. 

*I often wonder about this misconception, that autistic always means a child.  I don’t know if it’s that certain groups –coughAutism$peakscough- have so successfully pushed the message that autistic children need help that people can’t imagine that autistic adults exist, or if it’s just that even autistic adults should be referred to as children.  That’s the same reason people with developmental and intellectual disabilities are often referred to as having the mental age of a 4-year-old or something.  It’s misleading and obviously there’s a huge difference in how 4-year-olds and disabled people act, but for some reason people still do that.  I think it’s worthy of a post all its own, but I think Amanda Forest Vivian has already written on it extensively and far better than I could.
** No, you are not an expert because your second cousin twice removed is autistic and you see her sometimes at Christmas.  Assuming you know what autism is like based on your experiences with one autistic person is a fallacy.  I’ve learned what I have about autism based off not only my experiences, but on the experiences of many, many other autistic people I know. 
***When I say it might be okay to express your surprise non-offensively, I mean basically it might be okay if someone said something like, “Wow, I had certain presumptions about autistic people that must be incorrect and while I apologize for my unintentional prejudice, I’m grateful that my views were challenged and I can use it as a learning experience.”  Okay, it doesn’t have to be that formal.  Actually better not to do this at all.  I’m just saying that I am aware there might be a possible way for you to say you’re surprised to learn someone is autistic without being offensive.