Emma Shines a Light on Functioning Labels

“People think I am troubled and can’t decide whether I am low functioning or can’t make sense of the words I say, but either way they are wrong.  So whatever label I am given it is meaningless.  Neither one assumes my intelligence.  This confuses many.  What does a functioning label do for the person it supposedly describes?

“I can’t talk the way I think.  Where is the label for that?

“Why am I punished with a label that only detracts and doesn’t tell the truth about me?”

Earlier this year Emma wrote (from Emma Discusses Functioning Labels):

“Functioning labels are insulting to me.  And people like me do not like to have others label us as though we were meat at the market.

“I do not think Autistics should be given stamps of disapproval.   How would you like to be graded all the time?

“Money makes non-autistic people have a higher functioning label, but it is not a great way to measure the worth of a person or their intellect.

“I am more than any one thing.

“Most people do not behave well under the kind of pressure Autistic people must endure all the time.  A label belongs on a piece of merchandise, not on a human being.

“Do you think you function at a higher level than other people?

“Maybe others would not agree with you.

“Let us all  do the best that we can and stop othering everyone we decide is less capable.”

2010 in Colorado

2010 in Colorado

26 responses to “Emma Shines a Light on Functioning Labels

  1. “Most people do not behave well under the kind of pressure Autistic people must endure all the time.”

    This.

    • Yup.

      And also, the kinds of observation under which atypical kids are often expected to demonstrate capabilities, are directly harmful to being able to demonstrate capabilities. It’s not easy to explain why, but, for instance…I can’t role-play. Absolutely can’t. If someone asks me to, I *completely* freeze up. I can’t do almost anything in a situation that’s been artificially constructed for the purpose of assessing whether I can do something.

      • I am like this too, actually. Whether it is a test, such as SATs, or I am being asked in front of a great many people to answer a “test-like” question, I go blank. This actually happened at a conference recently.

        An interview is different and I’m usually fine, but if it’s a “test” I cannot think. My mind goes completely blank.

  2. “Let us all do the best that we can and stop othering everyone we decide is less capable.”

    Yes, yes, yes!! Wise words.

  3. I love it! So very well said! Labels should be for food and merchandise, not for humans! Emma is so wise beyond her years, Ariane!

  4. I can relate to all of this. Well said. If it were up to me, we’d get rid of “functioning” and “spectrum” and “severity” when we talk about autism. They are all meaningless, if for no other reason than that they mean different things to different people.

    “Functioning” in the academic world means “IQ” which has absolutely nothing to do with actual real-world functioning. And those other labels imply that one can have more or less autism, which I think is nonsense. There may be different “types” of autism (I think we don’t know enough to say much about this) but my autism is not “better” or “worse” than someone else’s.

    I agree that all of these labels are degrading and miss the point that we are all individuals.

    The counterargument I most often see from clinicians and educators is that it is helpful to put people into buckets so as to better know what kind of “treatment” they need. But I see it as a way of depersonalizing individuals.

    So Brava, Emma! Down with labels!

    • Thanks Michael. This whole idea that we can rate IQ is kind of silly to begin with, no matter what their neurology!
      “The counterargument I most often see from clinicians and educators is that it is helpful to put people into buckets so as to better know what kind of “treatment” they need.”
      Exactly and which I can even understand, except that the “treatments” needed are inadequate, not at all what is “needed” and (at least in Emma’s case) did not help, but actually did harm. The whole thing needs to be rethought!

  5. Yes, this drives me crazy! In forums I belong to, its so apparent that these labels become an identity. My daughter may be on this of the spectrum (??) but I know she has just as much potential as others. Its a different series of roads which take her from point A to B… I say we take the scenic route.

  6. Oh Emma, if only you could hear all the way to Paris, I am clapping and cheering for everything you wrote. To say “Well done” seems insufficient, somehow. Thank you.

  7. Bravo Emma! Your incredibly wise and perfectly phrased thoughts never fail to astound and enlighten me. When I want to “make a point” about something, I’ll often agonize over the proper words and phrasing, rewriting again and again until I feel like I’ve gotten it “right.” Yet you always get it “right” the first time–every time–in a way that I could never even imagine writing. I can’t wait to read what you’ll say next because it always blows me away! Love, love love you Emma!

    • Sitting next to Emma as she writes is such a privilege. I watch her eyes scanning the letters and then she chooses one and points to it and then the next and the next and these amazing sentence are constructed, each so beautifully worded… it is really incredible… what a talent and gift she has!

  8. I hope Emma’s world will shine without labels in the future. At present even though a person may have a brilliant mind, if they need help with daily living skills, they may need government funding to get that help. Since there isn’t enough funding, or enough kind people in the world willing to do things for free, labels are used to triage care. Labels can be insulting, and they can even get in the way of a person’s civil rights. In a world of complete cooperation and willing interdependence we can hopefully get rid of labels, then whatever care is needed, it will be cheerfully provided by anyone who happens to be around at the time. Good luck to all of you in changing the world. I hope Katrina and I live to see the day.

  9. “I can’t talk the way I think. Where is the label for that?”

    “Why am I punished with a label that only detracts and doesn’t tell the truth about me?”

    You make me think Emma. You enliven me and move me on, with what you say. You make my soul dance. You bring freedom.

    And you do all that in simply being you. There is no burden to this.

    There are answers to every question you ask. Answers which are not simple. Answers coming back as echoes from everything your question asking touches. Answers to be put into your words over a lifetime.

  10. (((Colin))) You have made Emma’s mom so happy. I’ll be showing Em all these comments when she gets home, but often she’s too tired to respond, so I just wanted to say – thank you. Thank you. Thank you.

  11. I say “more/less user friendly” if someone really insists on discussing “functioning levels”. it seems more honest, and gives me a chance to ask: who do they think we’re functioning for?

    (I also use low functioning NT as an insult when NTs spectacularly fail at the empathy thing)

  12. I often wonder what is this function that a human is supposed to do? Is there a way you would describe yourself to others, or should we simply eliminate labeling entirely. I’m kind of in favor of that outside IEP meetings and doctor visits, and other situations where one is requesting support services.

  13. She is an Angel on Earth in it’s purest form bravely enduring all to reach out and educate. She may be young, but wise beyond what years can label.

  14. Pingback: Buts and Rebuts | Autistic Speaks

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