People get so excited about kicking facilitated communication in the face as much as possible. My psych book has a sidebar in the DD section called "The Bogus Form of Treatment Called Facilitated Communication" which gleefully announces the poor results of FC studies and says how awful it is that Autism is a World ("which purports to show that FC works") was nominated for an Academy Award.
I really don't know how to react to this.
I don't agree with a lot of what Sue Rubin says but, you know, she's a person. Autism is a World is a movie about Sue Rubin, a person. Referring to it as a movie about FC completely erases her.
FC is easy to fake and frequently has been faked. It shouldn't ever be assumed to be working without evidence that that particular person is really typing. However, I feel like there is a way of reacting against FC which is not about FC at all. (In fact, it is even leveled against AAC users who are not communicating in a situation where someone could be physically influencing what they say. The immediate assumption is that they are being influenced, whether there is evidence of that or not.)
In the Amazon comments for Autism is a World people are basically saying stuff like: look at Sue Rubin. How could she possibly have those thoughts? This was also said, of course, about one of the first people to benefit from FC, Anne McDonald, who has CP and grew up in an institution thanks to a diagnosis of severe intellectual disability. It is pretty inarguable that Sue Rubin and Anne McDonald are really typing when they type. Which definitely doesn't mean that most people who someone is doing FC with are really typing. But does this mean that it's bad to do FC with someone, especially if you are doing it to attempt to teach them how to type independently later? I don't think it's bad at all as long as you don't assume that the person is expressing all their own thoughts.
But my psych book bemoans the fact that some people who work with nonverbal individuals still use FC as a treatment! Oh no! Because...every treatment is proven to work all the time? Stuff like music and outdoor activities are probably not proven to consistently "work" for severely disabled people, but...you know, I feel like they're a good idea. Because they might be helpful in some way.
Sometimes I just feel like there's this element of, "Aha! I told you that people who look like that don't have anything to say!" And that makes me feel very scared.
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My Psych book is much the same! It talks about FC as an example of observer bias. The other example of observer bias was this guy who thought he could teach his horse to communicate, and putting one right after the other, it sort of seemed like they were comparing autistic people to horses... Like "how silly to expect animals and autistic people to communicate!"
ReplyDeleteMy opinions on FC have *nothing* to do with "Oh, look, how silly to expect an autistic person to communicate" but merely with logic, science and ethics.
ReplyDeleteI find FC so horrible because people are communicating *for* that person instead of the person communicating for themselves. What if they are capable and what is being communicated is the complete opposite of what they wish but they have no way to tell you? How horrible that would be.
How would you like it if someone did that to you?
Go up to a random stranger and tell them that you would like them to use FC with you for one day. See what happens...
That is what goes through my head.
I think because I actually had a bit of a similar experience so I know how horrible it can be. I was told I was too stupid to go to college and would be "lucky" if I graduated from high school, would spend the rest of my life in an institution, etc.
It's horrible to have people talk *for* you, whether they say good or bad things for and/or about you.
"It is pretty inarguable that Sue Rubin and Anne McDonald are really typing when they type."
Has their communication truly been proven? I don't remember reading anywhere that it has. By "truly proven" I mean a rigorous test to prove their communication is true. But, most of the time, these people avoid doing such tests stating that they don't need "proof," which is a clever tactic to completely avoid the truth.
I'd like to believe that they are real, too, but logic tells me otherwise.
And I can't argue with that.
"does this mean that it's bad to do FC with someone, especially if you are doing it to attempt to teach them how to type independently later?"
No, as long as they actually DO go on to type independently. There has to be a point, though, where you just say, "Okay. This obviously isn't working. It is time to try something else." You can't continue doing it for years hanging onto the thought of "One day..." because that "One day..." will probably never happen and so it is best to move on to something else.
I think it *should* be tried because a handful of people truly have been helped with FC and if you can find another person than it would've definitely been worth it.
But, again, there has to be a point where you just say "No..."
It is hard to argue with logic and science.
Why does logic tell you that Anne McDonald isn't really typing when she types? She proved it to a court.
ReplyDeletealso, I think that it's apparent from my post that I'm talking about criticisms of FC from people who do not have disabilities that affect their communication.
ReplyDeleteI'm very, very concerned that the idea of being able to communicate in ways other than talking is not acknowledged by people who work with nonverbal individuals. I'm glad that FC at least brings that idea up.
FC is okay when it transitions to independent communication. When my brother learned to use his Dynavox and when Kiddo learned to use his Go Talk, the first few teaching sessions were facilitated until they learned to do it themselves. Now they both use their devices independently, although sometimes I'll move Kiddo's Go Talk for him so he can see it in situations where harsh light is likely interfering with his vision.
ReplyDeleteWorking with Kiddo on his Go Talk, I can see how caregivers and parents could very easily believe their client/child is communicating independently. When probing more abstract concepts with Kiddo on his Go Talk, sometimes I want so badly for him to get it that I take an overly optimistic viewpoint that he's understanding things, when later review of my data clearly demonstrates he is not.
Sue Robin (which you can see in Autism is a World) usually types independently, people generally only help her by holding up the device (although in other cases, this can lead to positional prompts, not real communication), so I don't really understand why people (other than the woefully ignorant) wouldn't see that she is communicating her own thoughts. I'm not familiar with Anne McDonald and don't feel qualified to comment on her particular case.
It is sad that people have this idea that alternative communication altogether is a scam, just because of the questionable nature of FC. But people believe all kinds of absurd things in the face of what should be obvious, scientifically demonstrable evidence.