Thursday, December 29, 2011

A Tale of Two Sisters: Regarding High vs Low Functioning

Sister A has a college degree.

Sister B dropped out after 2.5 semesters.

Sister A has a job. A good job.

Sister B is unemployed. On purpose, but still.

Sister A has a network of close friends. She loves them and they are a source of comfort. She wishes she could see and interact with them more.

Sister B has a handful people she knows and likes. She is glad she knows them and would be sad if they were no longer in her life, but she doesn't find much comfort in their company, and actively avoids socializing when possible.

Sister A likes to discuss all manner of topics with all sorts of people. She has specific interests, but happily talks about anything with anyone.

Sister B likes to talk about what she likes to talk about, regardless of what her companions would like to discuss. She becomes distressed when the conversation steers away from her own pet interests.

Sister A wishes she could find someone to love, who will love her back, and start a family with, someone to confide in, someone to grow old with.

Sister B is married, but thinks of her husband as a good friend and a good father, not as a romantic partner. She worries that he will grow to resent her aloofness and her inability to be emotionally intimate.

Sister A lives independently and employs a housekeeper.

Sister B cannot live independently for more than a month before she becomes homeless.

Sister A enjoys rich emotional dramas and understands subtle facial expressions and innuendo.

Sister B is often confused by the motivations of characters and the hidden context of their words.

Sister A is 26.

Sister B is 31.

Sister A is a wheelchair user due to cerebral palsy.

Sister B can walk.

Which sister is high-functioning? Which sister is low-functioning?

Spoiler alert: I'm Sister B.

If you saw a picture of my youngest sister, let's call her Crash, and me, you'd probably assume that the one in the wheelchair was the low-functioning one compared to her similar-looking-yet-physically-abled sister.

If your definition of "functioning" is "can walk," then yes, I'm high-functioning and Crash is low-functioning. If your definition of "functioning" is "can do math well" then we're both very low-functioning. If your definition of "functioning" is "can establish and maintain meaningful relationship," I'm clearly the low-functioning one.

My gripe with the terms "low-functioning" and "high-functioning," especially in regards to autism, is that "functioning" has no set meaning. There's no established metric to measure functioning. Usually when someone says that So-and-So has "low-functioning autism," they mean that person is probably non-verbal, maybe has self-help deficits, perhaps they lack bowel and bladder control, and/or maybe that person can't communicate his/her needs and wants.

An outsider might conclude that such a person is "low-functioning," and that an autistic who can speak, brush his or her own teeth, and ask for the things they need is "high-functioning."

Here's the trick: a number of "severely" autistic people, once given alternative tools to communicate, can eloquently describe their thoughts, desires, and needs. These people can, and have, achieved very high levels of education and professional success, even though they communicate via computer and require assistance with their ALDs (activities of daily living, like toileting, eating, etc.)

Picture Stephen Hawking. Physically, he is profoundly disabled, cannot speak or feed himself, and requires constant nursing care, yet is widely known as one of the most brilliant physicists alive. He uses adaptive technology to communicate, and does so beautifully and to the benefit of mankind.

Now picture Stephen Hawking, if he was alive 100 years ago. Would we be able to read A Brief History of Time? Would he be known to anyone outside of his family? Would he be able to communicate at all? Likely he would have been institutionalized, left to spend his days in silence, locked in his own mind. It makes me sad to even think of it, but this is the reality, in my belief, for many autistics today.

While the days of the nightmarish asylums are, mostly, behind us in America on the dawn of 2012, it can't be denied that many autistics presently are muted because they lack the proper communication tools. When these tools are provided, such beauty, honesty, and truth can come forth.

Carley Fleischman is one of those people. There are many like her. She was unable to communicate for many years, and, at 13, finally mastered her adaptive device and was able to express all that was shut up inside. Sue Rubin, the subject of the Oscar-nominated documentary Autism is a World, is another. Thanks to more accessible and affordable technologies, many children are given the tools they need to communicate with the world. The iPad specifically has helped so many autistics express themselves to others.

What does all this mean?

To me, it means the difference between low- and high-functioning autism isn't whether someone can use the toilet, walk to the store and buy what they need and pay for it correctly, or whether they can look you in the eye for more than a moment. The difference is the ability to use speech to communicate meaningfully.

I'm going to reiterate this for those of you who (wisely) skim my posts for the meat, because I think this is the most important point of all.

To me, it means the difference between low- and high-functioning autism isn't whether someone can use the toilet, walk to the store and buy what they need and pay for it correctly, or whether they can look you in the eye for more than a moment. The difference is the ability to use speech to communicate meaningfully.

When many so-called low-functioning autistics, yes, even the incontinent ones flapping their hands as they rock in the corner, have the proper communication tools, they sound just like I do. Many of them sound *way* smarter and *way* more eloquent. (Not a hard trick to do, har har.) Many of them are highly accomplished in their fields of study. When given "speech," they are as high-functioning as they come.

I mean, yeah, I look pretty with it here, on the page, but, c'mon. I don't even have an associate's degree. I can't hold down a job to save my life. I think it's perfectly appropriate to say really horribly morbid and insensitive things because they're "just facts."** But, because I look normal, and can speak clearly, I'm the "high-functioning" one. Next to my sister in her chair, I'm the "high-functioning" one. But it's not true. Inside, I'm a mess. I can *tell* you, sort of, what it's like inside my head, but often I don't know how. I present well, yes, and those who "look" autistic don't present as well. But that doesn't mean that I function better, internally, than they do.

Of course, it's absurd to say that inside every silent autistic is a Walt Whitman just waiting to come out. Not every autistic is a secret genius. There's *something* inside, though. Something unknown. Something you can't see or hear. Every autistic person has wants and needs. Not every autistic person will be able to express them, though, all the silicon in the world be damned.

I write this as I think it's really important to truly think about what words mean, and how they impact people. Calling me "high-functioning" isn't fair. It discounts my own struggles, my own problems. It puts too much pressure on me- often "high-functioning" means "passes for normal," and passing for normal takes an enormous amount of energy.

Similarly, it's even more unfair to strap "low-functioning" onto a person who doesn't communicate in the way you might expect. It ignores their strengths. It sets the bar unrealistically low and effectively shuts that person out of any meaningful interactions and education. It excludes them from their peers and sets them up to always be seen as being "less than." Maybe they don't pass as normal so well. Who cares?

Neither does Stephen Hawking, and I double-dog-dare you to call him low-functioning.

*Note: I had to consult Crash on this piece, to flesh out our differences. She said to include that fact to further illustrate my lousiness at reading and understanding other people, which I don't really understand because I think I just wanted to get my facts straight, but, as she always says, her IQ is 4 points higher than mine, so I default to her genius!

** (this is a true story) I thought it would be a good idea to suggest to poor Mr. Husband that it would be sweet of me to write a letter to my dad, in case he dies. Because, you see, even though he's in perfect health and is very young, my dad's going to die someday, and I want to make sure I say all the things I'd like to say to him before he dies. And if I happen to be present as he's dying, probably I'll be too upset to remember everything. So it makes perfect sense to write a letter now that he could keep until he's dying. Then I remembered that he could die suddenly, so I should just write the letter for him to read now. Mr. Husband was beyond appalled, which I still don't understand, because, seriously. You need to take these things into consideration. Also my dad didn't think it was such a great idea, either.

1 comment:

  1. i think morbid and inappropriate things constantly.