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  • Home
  • Introduction to Autism
    • Characteristics
    • Common Myths >
      • Negative Narrative >
        • Autism Controversies
  • How to Interact
    • Stigma & Discrimination
    • What to Avoid
  • Advice for Parents
    • Visual Supports
    • Autism Treatments
    • Explaining Autism to Kids
    • A Mother's Story
    • My Sibling Perspective
    • Autism Explained for Kids Site
  • All Kinds of Minds
    • Culture of Autism
    • Late Diagnosis
  • More
    • How to Assess Claims
    • What Causes Autism?
    • Additional Resources
    • Site Info & Feedback >
      • About the Website
      • ASE FAQ
      • Survey
      • Contact Us
      • Make a Submission
  • Our Blog
    • On Self-Advocacy
    • Trouble with Changes
    • Smoothing Transitions
    • Autism Speaks
    • Vaccines
    • Infantilization
    • Her Autism is Worsening
    • Stimming
  • Autism Tutoring

On Black and White Categories and Self Determination

8/6/2014

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I should be studying for finals right now (I have one tomorrow morning), but instead an incident keeps sticking in the back of my mind, and given that it's been a month since it occured and it's still staying with me, it may be worth writing about.

I was paying my bill at a restaurant, wearing an autism understanding t-shirt as I frequently do, when the cashier said, "I love your shirt! My brother's autistic." Well, I thought it was the coolest thing to find another sibling so randomly and I told her so. And then our conversation hit a rough patch:

Her: "So is your sister high or low functioning, then?"
Me: "Well, actually, she doesn't like to use functioning labels. She and a lot of autistic people say they oversimplify."
Her: "So she's high functioning then."

The rest of the conversation was great, but that little sticking point has stayed with me. We as a general population LOVE to put people into either-or categories. You're either male or you're female. You're black or you're white. You're an introvert or you're an extrovert. You're high functioning or you're low functioning.

The problem is, the world doesn't actually work like that. And by forcing people to try to fit into our contrived categories when they're clearly telling us they don't fit, we are doing them a serious disservice. So when I tell you that Caley doesn't like functioning labels, that's not a fact point to use to justify putting her into one. It's a right to self-determination, and a stance against a practice that she and so many other autistic people have spoken out against.

It's time for us to listen.

-Creigh
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Autistic as an Insult

5/24/2014

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Originally published: 5/18/2014
Normally I love to watch language evolve, but lately I've noticed one development that I loathe: the evolution of the word autistic into an insult. It fills me with anger and frustration whenever I see this happen, and every time I see it I set the user straight. But this time another commenter beat me to it. Here's a snippet of what they had to say:

"Are you kidding me? Did you just start using the word "autistic" as an adjective to denigrate an entire subsection of our society? ... It is people like you that make people like me constantly change the words I use for certain disabilities, because you think so unfavorably about them that you turn the terms into insults. Note: the autistic spectrum is filled with some of the world's smartest and most creative people."

It filled me with joy to see this. So often it can feel like a lonely battle, fighting against stigma and discrimination with only a handful of allies, and I know most of you have experienced that same frustration. Yet this time, far from feeling saddened and alone, I felt joy, joy which I wanted to share with you all. Because this comment was just a tiny reminder that we're not alone in our fight for what's right. We're part of a bigger movement, and small moments like this, dear readers, are how we achieve change as a community.

-Creigh

Note: When Caley read and approved this (as she does with all my posts), she gave the commenter a standing ovation.  I don't have an account on the site this was posted on, but if you read this, Ryan Friend, giant props. Also, to anyone who's curious, the article that spawned the comment thread of which Ryan's words were a part wasn't even autism related - it was about Soylent, of all things.
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On Functioning Labels

5/14/2014

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Originally published May 1st

In the autism community, we tend to label autistic people as being "high functioning" or "low functioning" in accordance with how well we think they function in society. You've already likely guessed one problem with this - where's "medium functioning"? - but the problems with this labeling system go much further than that.

The first problem is what does functioning mean, exactly? Does it mean the ability to communicate verbally? Or intelligence? What about people like Amanda Baggs, who are quite intelligent, yet does not speak verbally nor hold a job? Is it, then, holding a job? Well, not exactly because there are plenty of "high functioning" people who don't have jobs. You get the idea. Functioning consists of so many different variables, and to apply one label is to gloss over the natural variation from person to person.

The second problem is, it over-generalizes. A person's level of functioning varies minute by minute. Some people, for instance, can verbally communicate very fluently most of the time, but sometimes can't speak at all. And meltdowns and sensory overload mean that a person could be functioning well in society one minute, but the next not hardly at all.http://musingsofanaspie.com/2013/06/26/decoding-the-high-functioning-label/

Misconceptions are another problem. The biggest one is basically that a "high functioning" autistic person is somehow less of an autistic person than someone who is "low functioning". There are the stereotypes that come with that - we tend to think "high functioning" people need/don't need certain accommodations and the same with "low functioning" people instead of taking it case by case. Plus there's this whole idea that the words of "high functioning" people doesn't apply to "low functioning" people, which is generally a pretty arbitrary difference.

And then, of course, the fact of the labeling itself is an issue. We give autistic people these labels, they're not generally self-given.
The labels also don't stand up to clinical tests of validity and tend to be based simply on the impressions of others as to how well an autistic person can pretend to be neurotypical. Also, categorical labels aren't generally conducive to spectrums anyways, so there's another problem.

I could probably keep going, but I think I covered the biggest points. I think we say "high functioning" and "low functioning" because they're short, easy labels. Even I will use them at times, to describe how a person seems to the rest of the world. But I rarely do so and always use quotes to make the fact that it's a serious over-generalization clear. I suggest you do the same. 

-Creigh
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Speak for Yourself

4/1/2014

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Originally published 3/17/14

In the autism community, the pronoun "we" is used too much. This is a problem I've noticed and I'm uncomfortable with coming from both sides of the community. I already posted on the ASE Facebook page about my discomfort with "The Reason I Jump" in which the autistic author claimed to speak as "we autistics"...even though not all autistic people would agree on what he was saying. I had the same discomfort with the article discussed by Diary of a Mom, What Parents of Autistic Children Will Never Tell You, which used the "we parents" phrase. And these are only two tiny examples in a much wider problem.

I do not seek to devalue Naoki Higashida or Jo Worgan or any of the many, many writers and speakers who have spoken as "we ____" when I say this. Their words, their experiences, their right of expression, these are all valuable things. I learned from what Naoki and Jo wrote and I would never desire them or any one of the other authors who has employed "we" to stop writing, or to feel like they were under attack for their slip of a pronoun.

It's not their fault and I do not write this to shame or silence them. They were trying only to help, to express their very valid thoughts and feelings about what it's like to be a part of the autism community, and to help others in their situation who they assumed felt the same way. In many cases, they thought rightly, and their words have certainly resonated with many, though not all.

But we, and I do mean we, need to change this idea that one person can speak for everyone, this assumption that our experiences are alike. Because we are a very diverse community and while it is important that we speak for ourselves, it is equally important that we not put words in the mouths of others.

-Creigh
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    About Creigh

    I'm a college student who grew up with my Autistic younger sister, Caley. I've got a bachelor's degree in Psychology and I'm currently studying for my Master's in Speech Language Pathology.

    Neither of those, however, have given me an understanding of autism. All of my understanding comes from learning from the many autistic people that I know. As a result, I have a very different outlook on autism than most, and a burning desire to tell the world what I've learned. This blog is one of the many areas in which I attempt to do that.


    *Note, none of these make me a professional, so advice I give is not professional advice.

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    Starting about in March 2014, all of these posts are originally published on Autism Spectrum Explained's Facebook page, and later reposted here for archiving purposes and easy access for ASE readers, including those who don't use Facebook. 

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