7/02/2011

A Look at Facilitated Communication Posts and Disappointment

Sometimes, we find ourselves obsessing specializing in particular topics, and it's only after the fact that we realize it was happening. Occasionally, it's into areas we would never have expected. No one could be more surprised than I was that vaccination became a focus of interest and an area in which I'd start collecting and reading as much as I could on vaccines, and yet I can't imagine throwing around the "I'm an expert" bit as some folks do. Despite anti-vaccine activists insistence that there's little research, I'll never read all the literature; there's simply that much research. The go-to textbook on it is over 3,000 pages alone. You can imagine my irritation at people who claim they've done their research and know what they know but they've never seen that textbook. What they mean is they've read whale.to or another conspiracy site, joined a forum or facebook page and they're now the experts. But I digress.

Facilitated Communication is another of those topics which has become a sustained focus of interest for me. Listed below are the pieces I've written on it here at Countering and if it appeared at Science 2.0, a link to it there, as the comments are often very illuminating over there. If you've missed these posts, if you don't know what it is (or that it's going under the innocuous "supported typing" moniker now and that several prominent autistic individuals who use AAC are actually being facilitated and not communicating independently, if you've missed the stories on parents going to jail because their daughter was facilitated into accusing them of rape, maybe you want to take a bit of time. Don't take my word for it, though, look at the research, too. If you need a journal article I refer to in one of the pieces, email me at kwombles@gmail.net and I'll send you the pdf. 

I'd recommend starting with my last piece on why I think it's so very important that we be skeptical. Let me add here, as well, that when I see people who should know better, who I believe do know better, stand on the sidelines that they would never ever stand on if it had to do with autism and vaccines, I'm disappointed in their choice to allow charlatans and cons--wolves--in. And make no mistake, the people who are promoting FC know it doesn't work. That's why Biklen's changed the name, changed his website, and buried or removed the links to the research on FC. Now he markets it with AAC and it slips in, even though it should have died away long ago.

          For instance, this 13 page pdf on training facilitators?  www.­inclusioninstitu­tes.­org/­userfiles/­file/­Training Standar­ds Facilitator C­ompetencies.­pdf. It's gone. You get a short overview now at http://soe.syr.edu/centers_institutes/institute_communication_inclusion/about_the_ici/FacilitatorTraining.aspx instead

           The original Facilitated Communication Institute page http://www.inclusioninstitutes.org/fci/  is gone. Just gone...you can still look at it here, though, courtesy of the wayback machine.

           As for research, it's been recast as Supported Typing and there's a pdf of  research supporting FC. When you click on the link for research not supporting it, though, you get taken to a page not found instead. The fact that 13 professional organizations have denounced FC? Never mentioned. Instead, Biklen assures readers that "But the story of facilitation and research on facilitation was just beginning. A number of studies, using multiple methodologies, have now successfully demonstrated authorship; these studies have demonstrated that is the communication aid user who is conveying the message, not the person providing the support." No, they haven't.
  • SQTs: Lilienfeld (2005) Looks at Dubious Autism Treatments  (Science 2.0)
It goes without saying that just like with the anti-vaccine movement, we're not going to change the minds of those who've been devoted to it for decades. We're not going to change the minds of people who are vested in the methodology because asking parents who're using it to let go of their kids' hands and arms and accept that their children are profoundly disabled is asking more than they can do. The key here is to reach this next generation of parents confronted with a non-verbal, apparently intellectually disabled child and convince them that if their child is capable of communicating, there is sufficient technology available to ensure that the child's communication is free from corruption and therefore genuine. 

We must convince them that whatever level of communication their child is capable of is okay. It is the ultimate denier of the equal value of all human beings to co-opt their communication and pretend that they are somebody they aren't. And somehow we've got to get parents tempted for immediate success and reinforcement that there is a genius trapped inside their profoundly disabled child to get that, to see that by insisting that the value of the person is predicated on the supposed intellectual capability is denying the value of the person.

Figuring out how to compassionately address those who have fallen for it, to provide options and alternatives, is not an easy thing. After all, despite two decades of clear, consistent science showing it's bunk, we still have a major university supporting it and advocacy groups promoting it. Never mind it doesn't work, never mind that the disabled person's autonomy of expression is taken from him. Never mind the wasted opportunities to truly learn some form of independent communication.


The likelihood of convincing the family to walk away from this in trade for whatever communication the person can actually do is slim and next to none. We have to show families new to the diagnosis that this, while no doubt comforting within the family context, is not helping the individual learn to communicate independently and it's not real. Biklen and his fellow facilitators may give lip service to the idea of fading, but the reality is that this mother has to use two hands to get the communication she's wanting. And that ought to ring alarm bells for even the most gullible of people.

So even though the issue of facilitated communication isn't one I would have thought I'd take on and speak out against as often as I do, even though I have three independent communicators who are loud and fairly effective at getting their needs across and for sure their wants, I'm going to continue to stand up against this, mostly because I remain amazed that those disability rights activists who should be having conniptions over some facilitator denying the individual's autonomy aren't doing it.

Supporting disability rights, supporting neurodiversity, means supporting people for who they really are and what they are really capable of.



5 comments:

farmwifetwo said...

What to do with a non-verbal severely disabled child... assume competancy and teach them using skills they can master. I get upset just as much at parents that say "he failed the IQ test, therefore he's severely ID and we don't expect much". Nobody passes the IQ test unless they are textbook "normal".

My youngest son's teacher tells the story of a physically and mentally handicapped boy she had in her class. Diapered, non-verbal, handicapped... assumed she would just babysit him and that was all. This child sucked his fingers was doing a lot of harm and she pushed him to stop it. It got to the point where he would put a hand up beside his mouth to hide his hand with the fingers in his mouth from her. He knew... he understood... and she still smiles when she tells the story knowing she reached him. From there, if someone had cared, basic communication wants/needs may have been developed. Unfortunately, she had neither the time, resources, nor school/parental support to do so before he moved on. This is wrong.

My youngest's IQ test says he's 2/3yrs developmentally... his ability to learn to read to master language and comprehension INDEPENDANTLY, says otherwise. She and I discussed FC etc on Wed morning - neither of us believes that someone typing for someone else is what the typist is writing. INDEPENDANTLY is the key. Yes, we are certain there is more in that brain than he tells us... but until he can show us INDEPENDANTLY we cannot ASSUME he knows it.

Communication doesn't have to be fluent speech or essays.

melbo said...

You have read my mind, Kim. I've been looking at a lot of stuff about it lately and was going to ask you for a recommended reading list!

KWombles said...

Thanks, Melbo.

Fw2, I think you've hit the key: being willing to work at it, bit by bit, even when it seems little progress is being made, assume that they can and will do more if given the instruction (which often has to be broken down into constituent steps), the chance to try, and the time.

And no, not everyone will reach fluency, but the kid a parent was told would never read or write might just be texting his mother the grocery list to her at the store. :)

David N. Andrews M. Ed., C. P. S. E. said...

FW2, I know I often disagree with you - sometimes quite vehemently - but in this situation you'll find that I agree with you on something.

However:

I get upset just as much at parents that say "he failed the IQ test, therefore he's severely ID and we don't expect much". Nobody passes the IQ test unless they are textbook "normal".

To be honest, as someone who uses such tests occasionally in his work, I can honestly say I've never had an examinee ever pass an IQ test. Nor, for that matter, have I ever seen an examinee fail one, either. The reason for this is that they are not pass-fail issues: they are a means for comparing performance with a whole group of people - the norming group. Now, this is not intended as a way of discarding people - even though certain stupid professionals in the past have gone out of their way to do this.

Rather, the intention is to compare in order to identify support needs. The notion of 'normal' is pretty poorly defined, since any score that falls on a normal distribution is - by definition - within the normal range. The so-called 'normal limits' (basically two standard deviations either way of the mean score, when the scores have been appropriately scaled) are a human invention, and only have meaning if it one is using the concept to enable a plan of action to be made that will enable the examinee to made some sort of progress, be that progress educational or behavioural.... and so on.

That being said (needed saying), your point regarding what counts as communication is absolutely spot on.

Quiet Contemplation said...

Thank you for this. I have not really touched this subject yet in my blog, or on my page. It's such a sticky issue where the people that believe it, really can get quite upset when you challenge what they think they know. It's not necessarily that I take no side, or won't voice my opinion, but I try to get to issues as I can, and as I have to to properly research. This one has not been fully researched by me, but I don't feel that it matters, the evidence still can't back it up, even after yrs of people taking data. So, in the end, I remain skeptical in light of the evidence.