On stereotypes

During bible study on Wednesday, as we’re trying to recruit people to come to my presentation on Monday, they had my article sitting out on the table.  There was a lot of pointing and smiling and waving in my direction.

Not once, but three times, people came up to me and asked how I knew so much about autism that I could write a book, or what was my degree in that I knew about autism, or did I have a child with autism?

Uh, in case you missed the point of the article… I have autism.

One lady said, “But that’s what kids have.”  Yes, yes they do.  And then they grow up, and they become adults with autism.  Did you think we disintegrated in to thin air on our twenty-first birthdays?  Really.

But the other two said what people always say.  Always.  “You must be very high functioning then.”

I take issue with this for mulitple reasons.

First, I hate functioning labels.  They offer little to no information about skills and abilities, and they don’t do much of anything besides pidgeon-hole people’s expectations of us.  When you say that a child has “high functioning” autism, people expect that the child really doesn’t have any issues.  They expect a high IQ.  They don’t expect behavioral issues.  They expect clear communication.  As we well know, these are not always the case.  And then, when we say that a child has low-functioning autism, we expect intellectual disability.  We expect diapers.  We expect danger and violence.  Once again, this is far from true for every child.  Stephen Shore told me that functioning labels are “dangerous,” and I happen to agree with him.  I would add to that “useless” and “offensive.”  Do you want a quick way to describe your child with autism?  If that’s what you’re after, try something like, “My daugther, Lydia, has autism.  For her that means that she is aloof, not always verbal, and has extreme sensory issues.  She’s also an author and an advocate.”  Now that gives you a great picture of who I am!  Much more informative than “mid-functioning,” isn’t it?
Secondly, I truly am not all that high-functioning!  Not to mention that people who have a thirty-second conversation with me are far from qualified to make or offer such opinions.  As I’ve said, and as I’m sure I’ll say again, I’m somewhere in the middle of the spectrum, on average.  But, I can be almost anywhere at any given moment.  I generally appear much more mildly affected when staff is here and much more affected with my mom is around.  And then, when alone, well, watch out.  I can only put on a face for so much of the time, and then I have to let loose.  I don’t know what your definition of high functioning is, but in my mind, it does not include not driving, not working, and needing staff every day.  It does not include becoming a hot mess under fluorescent lights after just a few minutes.  It doesn’t include being unable to cross the street without help.  Just sayin’.

Finally, and what I was after with all this, is that their comments stem from a stereotype.  Now, they don’t know it’s a stereotype.  All they know is that they’re trying to be complimentary.  But really, what they’re saying is, “I have this picture of autism in my mind.  I imagine that autistics are (what? ugly? dirty? smelly? not intelligent? rude? silent? loud?).  Since you’re not any of those things, you must be very high functioning.”  Nevermind the lack of eye contact, nevermind the extreme reaction to light and sound, never mind the staff at my side, never mind humming to myself, nevermind any of it… I don’t fit a stereotype, so I’m not “really” autistic.

I’ve been trying to think of a thirty-second way to say all of this.  Oh, and uh, nicely.  I don’t blame these people, per se… I just think they’re uninformed or misinformed.  I want to change that.

Ideas I’ve gotten are to describe that autism is a spectrum, just like “red” can mean anything from pinkish to bright red to dark red to purplish.

Or, to say thank them and say that I’ve worked extremely hard to appear this way, but that it’s not a true picture of how I usually function.

While I see the benefits in both these ideas, they… don’t feel right.  Does anyone have anything else to suggest?

Oh, and in the meantime, I’ll offer you a replacement for if you’re ever tempted to say, “He must be so high functioning!”

Say, “He must be working so hard.”

Say, “You’re doing a great job with him.”

Say, “He’s a great little boy (or girl! I use “him” since so many of us are boys).”

Say, “I love the way he ____.”

Say, “He has so many strengths.”

Say anything.  Just don’t say, “He must be so high functioning!”

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9 thoughts on “On stereotypes

  1. I like your “things to say” I think the terms high and low are very misleading too. A person who “speaks” may have more trouble communicating than a person who uses an AAC device, for example.

    I hate it when someone says my son “Seems so much better.” I always think, “Uhm, he wasn’t sick.”

  2. I’ve not been sure about the “he works so hard”. On the one hand, it’s great to acknowledge hard work [from the person and those around them] and on the other hand, it can feel too much like “a something for hire”.

    I would probably feel comfortable with saying “He has so many strengths” and it’s great to find a way to acknowledge the many things a person loves – whether or not you love the things they love too.

    On balance, I think work and love really humanise people especially in people’s perspectives.

    And say something that acknowleges their world and the world.

    So: talk about skill and ability, and acknowledge that.

    Have a wonderful time with the tigers!

  3. Not everyone who would perceive you as high-functioning is uneducated about autism or only knows the stereotypes. This assumption you seem to be making is pretty disrespectful to those who experience autism differently from you. Others have a right to their perspectives and opinions. How a person views the functionality scale will depend on their perspective and their individual experience with autism.

    When someone comments on how high functioning I seem to be, I usually just smile, possibly I’ll sign/write thank you, rarely I’ll acknowledge that it is difficult for me to appear so. It doesn’t matter how differently I appear elsewhere, in that moment I am doing well enough to appear high-functioning to that person and that is a success. Low-functioning is NOT a pleasant way to be perceived, this I know far too well so I am always glad to be perceived as high-functioning now.

    • I didn’t say it in this post specifically, and maybe I should have, but I do say it often enough, including in my book- that I do not and ever mean to speak or anyone else with autism. I speak for me, and only me. So, yes, this is the way *I* perceive things. If someone else perceives them differently, they may write their own pieces about that.

      Also, I am not capable of envisioning how others, even others with autism, experience the world. I mistakenly assume that people know that (there goes that theory of mind again) without me saying it. So, when people read my words, it does not cross my mind to say, “Not everyone with ASD thinks like I do.”

      Please think about how it comes across when you accuse me of being disrespectful. I am not, just about ever, disrespectful, at least with no intention. Rather, I struggle with theory of mind and empathy (as usual, NOT EVERYONE WITH ASD HAS THESE ISSUES, but I DO), which leads me to appear to be ignoring others’ points of view.

      I’m sorry if I offended you. I didn’t mean any harm.

  4. This isn’t about others with ASDs not thinking like you. It is about your assumption that anyone who calls you high-functioning is either uninformed or judging you by stereotypes.

    I was not offended, I assumed you meant no disrespect.

    What I am suggesting is exactly what you are asking of me. Try to assume the best of intentions when people tell you things. It is hard and takes a lot of effort when you are used to assuming the worst, but it smooths out social situations a lot. Plus, it means you get less upset and less offended.

    • Thank you for the rational response. Please forgive me for misunderstanding you. Communication, as a two-way street, is not my strong suit. Much more so in writing than verbally, but I still see the details when I ought to see the entire picture.

      I should have been clearer. I was referring, in this case, to the three women who approached me at church that day. All of them made it known, in some way or another, that they knew little to nothing about autism, via other comments they made (things such as, “Don’t only children have that?” and “I thought autism meant you word r-word”). Misconceptions. Stereotypes.

      Also, as I described in the post, I am fully aware that no one means ill when they say these things. As I said, they’re trying to give a compliment. Some people even take it a step further (“Well, you sure don’t LOOK autistic.”). So yes, in this case, they were misinformed. Are all people? Not by any means.

  5. here’s my analogy, relating to disability and autism: people who have a permanent or long term limp, can (and sometimes do) seek to minimise its visibility through means such as walking in a less natural feeling, but more ordinary looking way (on purpose, continuously, with exertion.) this may not (were a gait specialist to look) be how a leg ordinarily walks, but less ostentatious than a very dynamic limp.
    (or tailor what they wear or where they walk.) this sort of thing is exhausting, causes pain, and restrictions on behaviour.
    Now various cultures or demographics or points in history have more or less people with a gait problem, carrying various levels of stigma etc.
    If you, in, dressed up, at a friend’s wedding, or at a job interview, were to conceal a limp, someone might say “oh you can’t possibly have a serious or real problem – it’s not like I noticed it, you’re fine”
    you could compare this by explaining how you can’t do this all the time

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