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.

26 comments:

  1. As you may know, I recently moved, and so had to get a new Vet's Admin Dr at the new town. My last VA Doc was a very good one, and we had a good relationship after I had discussed with him the reason why I had quit the first Dr I had been assigned to. That first Dr, (actually a NP), was an arrogant, condescending A-hole who considered Aspergers to be a "mental disorder" (it says so in the book), and treated me that way. For one thing, he refused to give me a prescription for anything to help me sleep, saying I would have to see the psychiatrist for that! After several such insults, I refused to see that one anymore, and they replaced him with someone who wasn't an arrogant ass. (They had heard similar complaints from other veterans.)

    So when I met this new one last month, I briefly told him about both previous Drs, that I had been well-treated by my last one, but not by the first one. I wanted to know what his attitude would be, and it seems that there won't be a problem.

    In dealing with these supposed professionals, it's worth repeating that - "The message you should be taking away is that maybe autism doesn’t always present how you thought it did."

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  2. Maybe I should actually start saying that out loud. Maybe it would change how some people act. Sometimes I find it helpful to tell doctors I'm autistic and other times it gets me treated like I'm 5. I've seen people treat me normally and talk to be like an adult, then change after they find out I'm autistic. Then there's the stupid questions (one nurse from another office asked, "What? I mean--do you still have it?")

    It's really hard for me to stand up for myself still. I communicate much better in writing and it's hard to make a coherent point on the spot. But "Autism doesn't always present how you think it does," is an easy thing to say. I'll try that next time.

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  3. One of my neighbors in this house was a school psychologist, and the first time I spoke with him (in the driveway), he inquired about the "Autism - It's not like you think" bumper sticker on my car.

    So of course, I wondered just what he thought it was about. I told him that I had graduated, served 4 yrs in the Navy, got married and had 2 kids, worked 45 years before retiring myself. Told him that I had been Dxd eleven years ago, and was very comfortable with it and knowledgeable about it. He seemed to understand that it was a spectrum, and I think that I allayed his fears, if he was worried about his new neighbor.

    The last time I confided in a neighbor about this, he threw it up in my face later on, and probably gossiped about me with his buddies. But he was an alcoholic with some sort of brain damage, and the two have very little in common. At least, I hope there won't be a problem coming up later because of my speaking of it.

    What I know for sure is that I'm tired of trying to "pass", as I did it most of my life, and it's damned tiring!

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  4. Here's a real groaner of a bad joke. I'll give you a hint; it is not a gimp joke, but a drunkard joke.

    See: http://www.thedonovan.com/archives/2011/03/your_sunday_ser.html

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  5. Came by via a spot of linkhopping, and--man, thank you for writing this, and for articulating how pissed off I feel when I try to bring up some aspect of being autistic and people go "well, you don't seem like you really have it!" And then expect me to take this as a compliment.

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  6. Completely understand, sciatrix. It's just another example of how deeply ingrained ableism is in our culture. People are so anti-disabled that they don't even know it and they can't see why someone would be offended by something like that. After all, it's better not to be disabled, right? -sarcasm-

    @justthisguy, I've actually heard of disabled people being mistaken for drunk before. There was actually a case a while back where an autistic man was tasered for being "drunk in public," even though his brother tried warning the police officer the man was autistic and had a heart condition that could make tasering him deadly.

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  7. @Clay, I'm sorry I missed your second response. The notifications I get through e-mail when people comment sometimes get buried under other mail.

    I don't think anyone should feel the need to pass and I'm glad you feel comfortable with it. I try to let people who have to deal with me on a regular basis know that I'm autistic because it's easier than people going, "Why is she so weird?" constantly. That's where I was before I found out what it was, and it sucked a lot. I keep hoping I'm challenging people's perceptions of what autism is, and that eventually it will be worth all the people saying, "I couldn't tell," or instantly treating me like I'm a small child upon learning of my diagnosis. There have been a lot of people who take it really well and I just tend to rant the most about the bad ones.

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  8. It's a double-edged sword. People who I meet these days are amazed when I tell them that I have Asperger's syndrome. I have compensated so much that I probably wouldn't be diagnosed anymore. When I reunite with people I knew from my summer camp or elementary school or whatever, their response is usually along the lines of, "Oh. Oh! That explains a lot!"

    It's frustrating when people don't believe me just because I don't have conspicuous social problems that I did when I was younger. On one hand it gives parents of autistic kids hope that they'll make it in the real world, on the other hand I get a lot of, "Are you sure?" or "People always diagnose themselves and they don't always know" bla bla bla. It's true I diagnosed myself (at age 21-22) but a shrink confirmed it. Like you said, people weren't there when I was a kid and others were avoiding me. Or when parents and teachers called my parents with "concerns." Or when I was 11 and was eavesdropping on my shrink at the time telling my mom, "She's strange socially, but she's very talented."


    Julie

    P.S. Come join my blog!

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  9. I hear you. I hear you loud and clear. I deal with this attitude at work, every day, from people who constantly ask why I'm so deficient in certain areas and then profess disbelief that my brain may be wired differently. I hope my son has a better time of it than I've had.

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  10. I get the same comment all the time, too. "You don't seem autistic."

    The best part is when they tell you that you can't be autistic because you seem normal.

    :-P

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  11. Very well said! I especially like "I don’t conform to your ideas about autism because your ideas about autism are wrong." Amazing how one sentence can say so much. Thanks for posting this.

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  12. I've been down the same road. If the disability is not visual people are blind to it. About 17 years ago I hurt my back and this past year I finally started using a cane because I can't be on my feet for more than an hour or two without having severe back spasms. Since I started using a cane in public people magically could see again!

    PS: I usually don't have the patience to read such long blogs but I sat still long enough to read this one. Well done. :)

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  13. Thanks for your article. I am 29 and have been bouncing back and forth for a year about what combination of Asperger's and profound giftedness has affected my life. I fantasize about people in my life "joining me in the uncertainty". I'm slightly offended when old friends accept that I am Aspie without a second thought, but not as much as by a waiter saying "That's a horrible thing to say".

    I could really understand why a person would say "I couldn't tell" in my case; I have done years of intense social and emotional training. I am trained as a therapist; so my self-understanding matters a lot because if I do end up fully identifying as Aspie then I could be an Aspie therapist, not just an autism-aware therapist.

    I could forget about this and leave behind the year I thought I was Aspie, but I also want to figure it out before and in case I have a biological child. I wouldn't be the first adult to take another look at Asperger's for themselves after their child has more obvious struggles. I don't want to include my future child in my self-understanding, I want to understand myself first so that I can just meet him or her as they are.

    I expressed great gratitude at the self-help group I have attended for a year, and said I probably wouldn't be coming for a while because I was thinking my experience is more about giftedness than Asperger's. People said "It can be both" and "It is probably both". It is interesting diagnostically that I am invited back any time, and this group is not open to neurotypicals.

    I always thought that if I was gay, I would be so gay and open about it. That is related to my values of integrity and honesty. Now I might have Asperger's, and I wonder if and how much to "come out". I might always wonder, so what would I be honest about? I slightly envy the clarity of somebody being able to say "I am autistic", "I have Asperger's", or "I am neurotypical". At this stage of exploration, I have no parallel clarity.

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  14. I used to live in St. Louis, but now live in Denver. I know what it is like to have people question my autism. To me 'black passing as white' is not the easiest place to be. And your blog again reminds me that most bigotry is subconscious and that is one of the biggest reasons why it is hard to fight against it. Out and out bigotry is easy to spot, but that nurse's bigotry is harder to combat. I would have responded pretty much the same way as you did. On another note, I am glad that St. Louis is getting an ASAN chapter.

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  15. A counsellor for autism told me that there is nothing mild about Aspergers. Please refrain from using the term "mild form of autism" as it undermines your significant difficulties and then no wonder people say stupid things like "Are you sure you have autism?"

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  16. All the best with the advocacy - you will do a brillient job.

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  17. I understand your predicament because I've experienced that as well. It's so annoying and leaves me not knowing how to respond. You are right. It's offensive because being on the autism spectrum is so important to my identity. In future I think I will try to point this out and let people know why they are wrong to say "you don't look autistic" or " we're all like that sometimes" or "Are you sure you're autistic?". Thanks for this blog article.

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  18. Good luck with the Disability Rights. I tried that but my social communication skills let me down. I have good ideas and can see how to solve problems but can't communicate them. It's very frustrating so I had to give it up.

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  19. In Response to Bob Yamitch's comment it sounds like he's a Autistic Savant http://en.wikipedia.org/wiki/Savant_syndrome

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  20. @Clay: that VA NP you ditched in a hurry suffered from a disorder that needs to be in the DSM but isn't: A-NOS, asshole, not otherwise specified.

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  21. I followed this in from a link on Facebook and I love what you've shared. Will follow in future and hope to start writing about my own experiences soon.

    You are obviously a strong woman who is confident enough to share your experiences. Fine tuning the language will come for all of us, I hope!

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  22. Thank you for making sense of this. I used to get comments about my daughter, "To look at her, you could never tell there was anything wrong with her, Jackie." I never could fully express *why* this upset me, but you do a great job of it!

    ~Jackie @beyondtheboundsofwords

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  23. Please consider the beautiful gift of any degree of labeled ASD .. we are the future and the blessed beyond measure. Let's come together in positive support and let go of any stigmas and stop giving our energy to anyone or any situation that depletes us in any way. We are SELF sufficient .. and for those of us who have children being misunderstood and labeled .. they depend on us to allow them to be unique and expressions of God Source. Namaste.
    www.facebook.com/belovedanuaya

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  24. I just ran across your blog -- through one of your smart comments on Angry Black Bitch -- and you rock! This really breaks it down. I love the idea of a Self-Advocacy Network and it sounds like a great project, best of luck with it!

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  25. kat I love this hunni many of us have been through the same ,similer happened with sam when he was small,we went to the docs i told the receptionist he had autism and would not wait much longer to be seen.She responded with "heres some paper you must be so proud to have an artist in the family",I did not bite my lip LOL and she got told what I thought of her comment,lol

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  26. it's unbelievable you know - people tell you you're 'eccentric', 'weird' or 'wrong', and then say 'i think you have aspergers' but then when someone says: 'why are you so weird?' and i reply with 'i'm told i have aspergers' they say 'no you don't there's nothing the matter with you! just get on with it and *TRY TO BE NORMAL*' and then ten minutes later they are calling you weird again.

    i have read about ASD before and the standard advice apparently given by medical practitioners is the same insult: "we don't know much about it so just try to act normal please"

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