6/28/2011

Skepticism of Stories to Good to be True

Over at Science 2.0, I was asked how facilitated communication supporters explain the tests that show FC doesn't work. On something so easily shown to be false, why does this persist?

Why are major organizations like the Autism Society (and apparently Autism Now) supporters of the thoroughly debunked facilitated communication?

Why can't more people see through feel-good stories where previously locked-away children suddenly start doing college-level work when they get facilitated, or just as bad, rapid prompting?

Part of it's political correctness. You stand up and call hoo-ey on a disabled person managing to communicate elaborate messages while looking in another direction and having his arm forcibly maneuvered to type the message. Yeah, that goes over well. Some of us intentionally turn a blind eye because we don't want to rock the boat.

Part of it is we desperately want to believe that no matter how disabled, how impaired, that the "whole" person is trapped inside and with the right method, he will be unlocked.

And part of it is the reality that if we don't question something, we believe it to be true. We find it hard to imagine that a parent would knowingly co-opt his or her child's communication, that a fraud could be be purposely committed. So feel-good stories must be true. Why would anyone lie? Wouldn't they know they were typing the words rather than the child?

People do all sorts of things, engage in self-justifying. They even convince themselves they have a telepathic link with the child, that the child is communicating mentally with them, and they are the conduit. In fact, the most ardent supporters of FC do believe just that: believe it's paranormal.

We cheer on the feel-good stories. We don't look closely. And by doing so we promote the unfortunate co-option of the disabled. They are trotted out on stage with their facilitator and made to perform (or their responses simply keyed in before and played, no effort to communicate made). And no one vocalizes a skepticism that the communication might not be from the person. No, as I wrote above, how can you? Rocking the boat and sounding the bah-humbug doesn't win you friends.

We owe our children honesty. We owe them the right to be who they are, functionally where they are rather than pretending they are something they are not. When we use a dubious method like rapid prompting or a debunked method like facilitated communication, we are quietly, unobtrusively communicating to our children that who they are isn't good enough for us. FC isn't about the disabled individual. It's about the desperate parent who went down that route, who couldn't live with the reality that the child was as disabled as he or she is.

The Wendrows couldn't accept that their daughter was significantly intellectually disabled and had language at a one-year-old's level and a trusted psychologist told them about FC. And they bit. And all of a sudden their profoundly disabled daughter was doing grade level work. And they didn't question that. They accepted it. The school, even though its faculty and leadership knew FC didn't work, didn't challenge this jump in performance, didn't test it, didn't question it because the Wendrows were difficult and threatened to sue if they didn't get FC.

Yes, we may be hardwired to prefer fairy tales to be true, to find patterns where none exist, to believe in connections where none are, but when we do, when we do this where it involves our children, we do our children a tremendous disservice.

When we cheer on an obviously facilitated individual we harm that person, too. We say it's okay that their autonomy is disrupted and words put into their mouths. We tell them that who they are isn't acceptable. Play along...go along.

And when someone raises the issue, believers might argue that the individual could be non-compliant and resist being facilitated, so when they don't, it must be communication, it must be legitimate. When a young woman types next to her father, whose hand moves up and down and left and right, there's no reason to think she's not taking cues from him on what to type. And I've seen videos of non-compliant individuals trying to get away while the mom holds on tight to the arm and types; the kid is pulling away, looking in the opposite direction, and yet the mom insists the communication is genuine. I've read teachers argue that verbal kids who they still facilitate actually communicate through the typing, that their speech should be disregarded.

Facilitated communication, in its new softer guise, will continue to find inroads as long as the members of the autism community allow it a foothold. And being skeptical of other things like vaccines and autism doesn't mean you're inoculated against FC. Oh no. It really, really doesn't.

We have to be willing to honor people for who they are, not what they can say and not what they can do. We should work hard to help our children acquire new skills, but we should want to make absolutely certain they are actually acquiring them.

This happens to all of us. Have you ever seen your child test and not perform well? "But, I know he knows his colors; he does them at home all the time!" If a child can't perform the skill when you aren't there and you aren't helping, the child hasn't mastered the skill. It sucks; it hurts, but it really doesn't matter what your child can do at home when no one is watching and you're there to guide him if it doesn't generalize outside the home and away from you (and I'm saying that from personal experience times three--it's a really hard lesson to learn).

We need to learn to back up, to question, and to let our children learn and demonstrate mastery of skills independently. If they have to be helped, if they have to be held onto in order to do it, it isn't their mastery.

We need to be skeptical. We need to be willing to stand up when we see something as horribly wrong as facilitated communication. If we really champion disability rights, then we must do all that we can to safeguard the disabled from being taken advantage of and having their autonomy removed. Facilitated communication robs the individual of the chance to communicate independently. In today's technologically advanced society, there are an abundance of augmentative and alternative communication devices that will allow the nonverbal the opportunity to communicate. There is absolutely no excuse for FC to exist or to be used. If you're holding the device for your kid and are sure he's communicating independently, put the device down on a table or desk and let him use it without you holding it. There's no reason it's in your hands. If the child can't perform the same tasks he was performing when you were holding it, you know that you were subconsciously directing that communication.

Skepticism of stories too good to be true, especially where there's no evidence that the skill is being independently performed, ought to be something we all aim for. It doesn't mean being cynical; it means taking a stance that allows one to be on the look out for people being taken advantage of.

7 comments:

kathleen said...

Bravo! Although this won't win you any friends..and sorry for that..BUT-you make an excellent point..people don't want to question the "feel good" stories.it would appear that it is because they don't wish to offend...not realizing that their acceptance of these stories really is offensive to the person the story is supposedly about.

C. S. Wyatt said...

No matter where I speak, parents ask about dozens of therapies, technologies, and so on. They want hope. They need hope, it seems, because they cannot accept there is nothing they can do to "recover" the person with autism.

There are issues of parental guilt: what did I do / allow to cause this autism thing? They need to somehow make amends for the autism.

It doesn't matter if it is FC, a strange diet (and I've heard some odd ones), "purifying the body" with chelation or strange foot pads, pressure chambers, special oils, etc. The parents will do and try anything. They are convinced the "autism" is merely hiding someone just like everyone else.

My father was from a Pentecostal family. Being born in the 1960s, it was "sin" that caused me to be different. Something someone else did caused me to be different. I don't get that logic -- punishing me for whatever?

It isn't about FC. It's about that parental horror, guilt, anger, despair, frustration, and grief. That's why a parent can ask me if I regret being born. That's why a parent can ask if I wish I weren't me. That's why they ask, "Computers help you communicate. Can they help my child?" and the child will, sadly, never be able to type or speak.

Parents want the perfect child, the promise of a legacy in the world. Society and evolution at work, I suppose.

FC promises the autistic will communicate. It's proof your child will remember you. It's also bunk.

farmwifetwo said...

C.S. it's not just guilt it's simply being lazy. We want to believe ABA or FC or any other therapy magically allows for comprehension and independance. Neither which is true.

Yes, FC is a tool for teaching everything from putting on socks to typing on the computer but if they child/adult doesn't master the skill independantly.... then you are simply doing the task.

My youngest's typing is a mess - it's independant. The words are spelt beautifully but he does read and spell at Gr 4 and he likes to listen to "writing with symbols" say the words and he knows when they don't sound right and asks for them to be fixed. His speech is clear.... but autistic. He has phrases and comments when he wishes to tell you something, he has echolalia - songs, tv, adverts etc - and his writing uses both. So saying that you should ignore the speech is incorrect... the writing should resemble the speech patterns.

One day it'll smooth itself out - or not. My eldest's writing skills from Gr 5 emailing his Grandmother over the winter to Gr 6 showed an amazing improvement.... but it takes time and practice. Not magically using a keyboard and typing epics.

C. S. Wyatt said...

I definitely agree that research suggests our writing and speech are reflective of each other. You can run textual analysis on my dictated and my typed texts and they are consistent.

I am the first to admit that my students often try too hard to sound "academic" in writing, but they still write in ways that allow me to guess the authors of specific papers. Learning the "code shift" from informal to formal writing is difficult for students, and there are usually markers of the issues.

If a child with autism using FC "writes" like the adult "helper" — serious clue something is wrong. It always seems painfully obvious to me that the autistic person is not the author. The style is simply too advanced, not the rigid noun-verb or verb-noun constructs I'd expect. When I'm rushed or stressed and barely verbal, even my writing is reduced to "go now" or "hurts." I struggle for two words when I'm minimally verbal. How do these children and teens write full sentences with "extra" words?

A good question. I'm sure there's a magical answer.

farmwifetwo said...

Especially, when they've never been taught how to build a sentence.

I too find that when either boy is stressed, ill, hurt speech vanishes. With the youngest all it takes is a half movement of my hands into the "help" sign and I can get an answer. 99% of the time it's one word, and often not exactly what is wrong... but a starting point that I can work from and fix what is wrong.

I find his speech to quite often be like a crossword puzzle. You get the answer, it is up to you to figure out what the clue is. The more and more we build answers and phrases for him the more exact his independant speech/information/phrases.

We're a long way from fluency, but it works for us. His written work is the same. Personally, I think he enjoys typing just to hear the program talk to him. That's fine too. Atleast he knows he can write whatever he is thinking onto the screen, and that's what matters.

sharon said...

This conversation about fc doesnt seem to crop up in Australia (yet). BUt I do find it interesting. There are aspects that remind me of psychologists and their patients who claimed to have uncovered repressed memories, usually of sexual abuse. Turned out it was often the therapist being suggestive more than any memories being recovered. I think this issue, and the ones raised by fc, highlight how vulnerable all people are to unconscious projection and suggestion. And I imagine this is what can make fc particularly problemmatic.

Lizbeth said...

I don't have much insight here other than to offer thanks for a well written and informative post. Thank you.