Friday, October 19, 2018

WYR: Functioning Labels

http://www.thinkingautismguide.com/2018/03/the-problems-with-functioning-labels.html

People love their categories.  I attend a parents-of-autistic-children support group as a kind of "autism translator" for the various parents that attend, in addition to learning from them and learning about the world of autism in general.  And while the author mentions functioning labels first as a professionals' tendency, I hear them most from those parents.

It's funny, you know.  The autistic people I hear described at those meetings vary in IQ, skill at day-to-day living chores, and ability to hold a job... but pretty much without fail, each parent describes their kid as "high functioning."  Perhaps that label is reserved for the autistic people whose parents have entirely given up on them, or whose differences and skill deficits are so momentous that the matter is un-ignorable.  After all, parents love their kids, and nobody* wants to put down their kid in front of a bunch of strangers.



Regardless of how a person is categorized in the current mode, both labels are erroneous, hurtful, and insulting.

We'll start with erroneous.  There are no true "high functioning" and "low functioning" categories, because people are literally not that simple.  You can have an autistic person with an intellectual disability who would fail right out of a public middle school, but needs little to no help taking care of themself and can hold a job with the right supports.  And you can have someone more like me, who graduated college, and yet apparently can't survive any 9-to-5 job for more than a year or so.

My doctor tells me that she sometimes helps even more extreme versions of this: the PHD grads with zero life skills.  This is the kind of person that understands and could explain advanced physics, but can't do their own laundry or keep their living area clean.  By the way, if anyone was wondering...  IQ is a very limited subset of intelligence, and literally only predicts how well you'll do in school.  It is not, in fact, a good predictor of how well you'll do in life itself.

So, the needs and abilities of any given autistic person will vary widely, first and foremost.  A couple years ago, there was an excellent comic that explained some of this.  Now, what people tend to do with functioning categories is try to "sum up" the support needs of a person, and round that either up to "high functioning" or down to "low functioning."  They then relay that information to the next person, losing every ounce of detail in the process, and that next person is left either thinking the person is "almost normal" or "hopeless."

Both summaries are wrong.  Most people would immediately categorize me as "high functioning" because I graduated college, manage a marriage and a house, and can act neurotypical fairly well.  But it's an illusion.  I am far from "almost normal."  Every autistic person I've heard described as "high functioning" is the same.  We may learn to appear otherwise, but that's only because ableism demands it.  Inside, we are still ourselves.

And now the really awful one: "low-functioning" or "hopeless."  Let me be very clear about this.  People with lots of support needs can grow, learn, and improve their skills and abilities.  There is no point at which a person is hopeless.  There is also no point after which it becomes okay to treat a high-needs autistic person like they're not human, or have no soul, or whatever other garbage people have historically been fed.

Besides being erroenous, functioning labels are also hurtful and insulting.  High and low functioning labels are ableism, or the kind of discrimination that prizes perfect health over humanity.  "Functioning" is literally a comparison to a standard neurotypical person.  And thus, any autistic person receiving a categorization is being told they are "more broken" or "less broken."

Back in the 60s, prior to autism being a recognized condition, John Elder Robison was often told, "you talk pretty good for a retard."  Today, he compares that cringe-worthy statement to being told he's "high functioning."  And that's the "nicer" end of the comparison.  Now just imagine you're already struggling with life and people keep telling referring to you as "very broken and probably hopeless."  To your face, and behind your back, no matter how hard you try, that's all you'll be to them.  "Not quite a person" or "has no hope of being a person."

I feel like being insulted and hurt is a reasonable response to that.  Even if the sentiment is expressed in ignorance of all that context.

Instead?


When I express a truncated version of this to parents of autistic people, their frustrated response tends to be, "So what am I supposed to say instead?"  I have yet to come up with a really good answer to that.  People love their categories, and love having simple words to express complicated concepts.  

The least harmful and insulting alternative is to give a sentence or two instead of a couple words.  For example, "My child is mostly nonverbal and needs some help around the house, but holds a 9-5 job and lives on her own."  Or, if my parents needed to do this, "My child is highly verbal and lives independently, but has moderate sensory difficulties and can't manage a 9-5 job."  You can then field some questions about the specifics if you need to.  Please note that each of these examples addresses both "functioning" strengths and weaknesses.  

The option I've given parents in the past is being a bit more truthful about what they're referring to.  So instead of "high functioning" and "low functioning," you'd say "better blended (into neurotypical society)", or "worse blended (into neurotypical society)."  You're literally critiquing the person's ability to pretend to be neurotypical rather than their immediate worth as a human being.  But honestly, in retrospect, this isn't all that much more than a bandaid on the issue.  

In the end, being compared to a nonexistent "normal" (neurotypical) standard person is detrimental to everyone involved.  Even neurotypical people.  Because there is no true normal.  Some non-autistic people have sensory difficulties.  Some autistic people write lengthy discussions of current vernacular.  Lots of people suffer from depression and anxiety.  And learning disabilities affect millions of people.  

Demanding to use functioning labels insists that being any kind of different isn't okay, and that everyone should strive to be like everyone else.  

No comments:

Post a Comment