Tuesday, October 6, 2009

Why would neurodiversity endorse facilitated communication

I just read an interesting post by Kevin Leitch, creator of the autism hub and left brain/right brain blogger. Kevin expresses an interest in facilitated communication and wonders if it is genuine. Kevin, if I remember correctly, has a nonverbal daughter and stated, in what is the usual bizarre logic and lack of common sense among neurodiversity proponents, in a radio interview ,that he did not believe autistics needed a cure. However, if a cure were available, he would give it to his daughter if she herself wished for it. In this interview Kev also repeated his belief that autistics who don't want a cure don't need one as well as the hub's old tagline "we don't want no stinkin' cure".

One wonders how it would be possible for a nonverbal child to communicate the desire for a cure. Perhaps, for this reason, Kevin is interested in using facilitated communication as a possible intervention for his daughter. Kevin expresses skepticism about FC but makes the following interesting statement:

The section of the autism community that accepts FC as a valid technique is largely the neurodiversity movement in who’s(sic) ranks I place myself. But is this making me a hypocrite? I place such firm emphasis on science when it comes to vaccines I can do no less in other areas. But on the other hand voices I trust implicitly within the neurodiversity movement speak out in favour of FC. Amanda Baggs, Kathleen Seidel and (I think) Michelle Dawson to name but three.

Kevin neglects to provide any links or documentation of where these three stellar individuals have endorsed FC.

Perhaps he mentioned Amanda Baggs because Amanda Baggs claims to be a nonverbal autistic in spite of the fact she once spoke very fluently and then started to gradually lose her speech in adolescence and then fully in adulthood, claiming to have suffered from catatonia. There is evidence that Amanda may not be all she claims. Though some people have accused Amanda of being a malingerer in order to receive her SSI checks and section 8 housing, I have yet to see any actual smoking guns. Even if Amanda is all she claims, she certainly does not present the same sort of clinical picture as Dov Shestack or John Belmonte who have never spoken.

Also, he may have mentioned Seidel because she and her husband are good friends of Baggs and may be endorsing the fallacious idea that Baggs is a low functioning autistic.

He also mentions Michelle Dawson but seems less certain about her. It would seem strange if Michelle Dawson had actually endorsed FC, being that she is such a stickler for scientific rigor and constantly complains about the low standards of science and ethics being applied to persons with autism. So far, the scientific evidence has been weighted against FC with most (if not all studies) refuting its existence. If anything one would think that Dawson would be criticizing FC and the unsupported assertions of its proponents who apply these low standards of science to autistics.

Interestingly, one person he does not mention is Ari Ne'eman. Given that Ne'eman is the president of ASAN and one of the things they have lobbied congress for is inclusion of augmentive communication devices as part of autism insurance bills and the autism treatment acceleration act. There can be little doubt that Ne'eman believes in FC.

Kevin also wonders if he should believe in FC given people he respects may believe in FC in spite of all the scientific evidence against it. He states that he does not believe vaccines cause autism because of scientific evidence.

Here we see a possible neurodiversity double standard. They accept science that supports their position but reject science that does not support their position. In the past Kathleen Seidel and others have stated that part of the reason they don't like the thimerosal or vaccine hypothesis is because it is insulting to them that anyone would consider them or their children "toxic". It would seem in part the autism vaccine controversy is more emotional to at least some neurodiversites than scientific.

In this vein, one wonders why at least some members of the ND movement, Ne'eman in particular might endorse FC. Perhaps the reason is, they can then say that rejecting a cure for autism or research in genetics and neurophysiology that might enable autistics to lead a better life is fine. Research that would enable autistics to speak is unnecessary, because FC would give them those same capabilities. It would also enable Ne'eman and his ASAN subordinates to make it look like they are actually doing something constructive to help persons on the spectrum, rather than spewing out hatred, lies and propaganda, such as the despicable no myths video. What did the ransom notes campaign, the campaign against the York Pennsylvania kidnapping sign, the pressure placed on AS to remove the I am autism video from their website do for autistic people, who must struggle every day of their lives? Perhaps ASAN realizes this and wants to make it look like they are doing something. Maybe ND's want to make themselves look compassionate and not reveal their true colors as to the vicious hate mongers that most of them really are.

Perhaps ND's who endorse FC have an ulterior motive.

Addendum: Michelle Dawson has commented on Kevin Leitch's post that she does not in fact support facilitated communication and Kevin Leitch has acknowledged the error and has stood corrected.


farmwifetwo said...

I suspect I'd be in Ms Dawson's bad books too b/c we are augmenting little boy's speach at school with an 8 button Augmentative Communication Device. I suspect it would fall under cruelty, unproven therapy and unethical treatment of my son.

Personally, I love it. This morning when asked how he was he said "I am FINE, Daddy" for the first time... 4 of those buttons are replies to "how are you" (fine, sick, angry, hurt).

FC used as a tool to teach a child/adult a skill, is what we do - and I believe in this 100%. They call it "hand over hand" now. But it's to teach the skill, not do the skill. So, no, unless they learn to do it independantly, I don't believe it works.

Unknown said...

It appears that Mr. Leitch is finally understanding that he can not credibly pretend to be a skeptic, or a supporter of science, while embracing and promoting Neurodiversity ideology.

Perhaps this epiphany will lead him to reevaluate his other unscientific Neurodiversity positions.

Adrianna said...

I'm sure this has already been brought up somewhere here, but I will say it. There are a lot of parallels between Neurodiversity and Deaf Culture. There are deaf parents out there who want their children to be deaf and who will deny them cochlear implants on the grounds that they will be deprived of their deaf culture. After all, they can choose to get a cochlear implant if they wish when they are older.

The problem is that cochlear implants do very little good unless implanted at an early age. When it comes to speech and becoming familiarized to the concept of language, human being have a very narrow window of opportunity. If a child does not learn speech and the basics of language before the age of six, she will hardly learn at all. This means that the child who does not receive a cochlear implant will forever be severely limited by their inability to communicate in spoken English.

Autism is the same. Facilitated communication is cunbersome to carry, takes a long time to use, is not usable by everyone, and it just isn't the same as spoken language. People who can speak can use their voices to color their words with tone of voice, emphasis, and so on. People who can speak can also sing.

Not being able to speak separates you from other people, limits your job prospects, and makes even the most basic daily living tasks a chore.

Besides, if you have a cochlear implant, you still have to wear processor. So if you want to be deaf again, all you have to do is shut the processor off.

Likewise, if you insist on being autistic, you can take out your keyboard, stop taking your medication, twirl around, and be as autistic all you want when alone or with understanding friends. Then when it's time to go to work, take the Zyprexa, give yourself some downtime before you leave, buy hypoallergenic soap and deodorant, and hit the road.

As people here have noted, most ND leaders are either mildly autistic or possibly not autistic at all. By the same token, most if not all Deaf Culture leaders either have residual hearing, became deaf later in life, or were assimilated into the world of the hearing at an early age. This means that, horror of horrors, they can speak English. They had audiologists and speech and language pathologists on their team. In other words, they don't know what profound deafness is like and how much children will be limited if they cannot hear or speak.

People, usual, speaking about what they can't possibly understand.

Navneet J said...

It is not just the narrow age bracket for learning spoken language that makes cochlear implants less effective if implanted in adulthood. Cochlear implants only work in cases of deafness where there is no damage to the auditory nerve. Years of not hearing causes the auditory nerve to atrophy, and the brain to rewire and use it for something else; so for many people deaf from birth, cochlear implants will no longer be an option when they become legal adults.

Adrianna, I think you're confusing facilitated communication with augmentative communication. If a non-verbal person can independently communicate using devices such as a keyboard, they should be supported and encouraged to do so. Facilitated communication is where someone else (the facilitator) holds the non-verbal person's hand, arm, or in the case of Sue Rubin, moves the keyboard under his or her finger. Studies have shown that facilitators were unconsciously authoring the communications; this is called the ideo-motor effect.

I am not surprised that neurodiversity advocates for facilitated communication, such they believe autism=genius, and past results of FC allegedly revealed hidden literacy in low functioning individuals; they were suddenly writing brilliant poetry, short stories, deciphering Shakespeare and algebra, could attend college with their facilitators etc.

Adrianna Hey said...

"Adrianna, I think you're confusing facilitated communication with augmentative communication. If a non-verbal person can independently communicate using devices such as a keyboard, they should be supported and encouraged to do so."

You're right about the confusion between these two types of communication. AC is a legitimate form of communication, and if you need it or prefer it, by all means use it. I prefer to use finger-spelling sign language or type rather than speak just because speaking is such a chore, even though I can speak very well.

AC, though, is still different from spoken language in several ways and can be inconvenient. This is why I would encourage all autistics to attempt spoken language, even if they are never able to achieve proficiency. In the end, AC may be the better option, but having some speech adds to your versatility.

Both methods have pros and cons, and each person has to decide which set of pros and cons they will accept. And this is when they have a choice. Sometimes they don't.

"Facilitated communication is where someone else (the facilitator) holds the non-verbal person's hand, arm, or in the case of Sue Rubin, moves the keyboard under his or her finger. Studies have shown that facilitators were unconsciously authoring the communications; this is called the ideo-motor effect."

Ugh. Don't get me started. Not only can communication be subconsciously altered, but sometimes, I think it's intentional. People love to tell sensational, sentimental stories about how their child who is trapped in silence is an articulate genius on the inside. It gets fame, sympathy, money, etc. So they use FC to communicate their thoughts and pass them off as those of the child. And if you offer to independently test their claims, they refuse to have them tested.

Benjamin Ethan said...

As I put on Kev's blog:

Since no FC users have identified themselves as making comments here, I will identify myself as an FC user, known to 3 others on this thread. FC is a tool, but a crucial tool to allow autistics and others who cannot communicate independently to make important life decisions. Without this ability to make life decisions, an autistic is not really a person, no matter what any tribunal states. Since facilitators are aware of and on guard for so-called facilitator influence, in the decision-making process it is ubiquitous outside influence that is the real problem.

If autistics or others do not have independent communication, then facilitated communication is an essential human right that all autistics must demand. I wish FC was scientifically validated 15 years ago when I had an important life decision to make, but would you really force me to wait 15 years and still be waiting? I protest such cruel treatment no matter how ethical one thinks they are being by upholding the idolatry of Science.