A Few Words on Language

One of my fellow students  has talked to me about his desire to help reduce stigma against autism and autistic people.  The stigma is, unfortunately, inherent in the language that is commonly used to describe autism (and autistic people).  Doctors, therapists, and the general public do this to nearly all people with disabilities– and we hate it.  Much of it is subtle, and takes an effort to become aware of.  Here are the examples that come immediately to mind:

Any time you talk about children being “at risk,” or call autism an “epidemic,” you reinforce the notion that autism should be feared.  When you say that someone “suffers from,” “struggles with,” or “is afflicted with” autism, you make autism a dirty word.  When you talk about someone “recovering from” or “overcoming” autism, you imply that autism is a disease, and also that being autistic is not good enough and that anyone who is autistic (no matter how happy they are) needs to change.  When you refer to a child by their functioning label, you dehumanize them, reduce them to a statistic, and indicate that their value as a human being depends on a single measure (their IQ, which was probably measured incorrectly if they are profoundly autistic).

Instead: say that a child is autistic the same way you’d say they are introverted, or tall for their age, or allergic to milk– without a value judgement attached.  Better yet, describe them in terms of their individual strengths, weaknesses, skills and sensitivities.  Talk about teaching them coping skills like meditation and biofeedback to help decrease their stress levels, or about them developing alternative means of communication such as text or sign language, or talk about getting them the supports and services that allow them reach their potential and have fulfilling lives.  Talk about what environments work best for them, and arrange their lives to meet those needs as much as possible.  Measure their successes in terms of their happiness rather than their conformity to behavioral and social norms.

Please don’t ever refer to an autistic person as “broken,” “missing/lacking” certain human qualities, “deficient,” or “defective.” As Lydia (“Autistic Hoya”) writes, “Disability does not mean defective or broken or diseased. It means lacking typical abilities or lacking specific abilities.”  This should be a statement of fact, not a basis for deciding someone’s worth or quality of life.  Many birds are disabled in the water.  Almost all fish are disabled in the air.  A dog is disabled at climbing trees.  A cat isn’t healthier or better for being trained to eat dog food and walk on a leash.  Yet this is what we do with autistic children.  We train them to behave like children whose minds and senses work unlike theirs– and call it an improvement, even with numerous autistic adults saying that their lives are better since they stopped trying to fake being normal.

And please don’t call autism “devastating” or “heartbreaking.”  A parent may be devastated when they discover that their child is homosexual, or plans to be an artist instead of a doctor, or is marrying someone of another ethnic group.  In all these cases, I think we understand that the parent needs to realize that their child is not a possession to be controlled, but an individual with his/her own mind and rights.  And that trying to change something inherent in their child will only end in heartbreak for both.

Life does not always go as planned, and yes, this can be difficult.  Families of autistic people face a good deal of stigma, and have to learn a lot very quickly, and may have to completely revise their priorities and ideas of how a family “should” be.  This, too, is difficult.  Parents of autistic children may fear for their children’s safety, worry about the high cost of therapy, not know how to rearrange their lives to accommodate a child who has very different needs than they expected.  And this is difficult.

But all of this is nothing compared to what an autistic child faces– an entire world that misunderstands him/her, assaults her/him with painful stimuli (over-loud noises, chemical smells everywhere, lights that make him/her feel ill), and on top of it all, expects the child to be the one to change to make everything all better.

It’s hard to feel sympathy for someone we don’t understand, but the autistic child truly needs our sympathy– not pity, not condescension, not praise as inspirational (none of us choose to struggle, and even if we did, we’re not doing it to make some random stranger feel inspired)– but every attempt you can make to put yourself in that child’s shoes so that, perhaps, just a little bit, that child doesn’t constantly have to struggle to be more like you just in order to be accepted or understood.

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  1. May 6, 2012 at 8:46 pm

    You have a wonderful way of expressing ideas that I think society is really only coming around to grasping. Please keep writing.

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