6/14/2010

So if Facilitated Communication has been shown to be Pseudoscience, What's a Parent to Do with a Nonverbal Child?

Repost from March 26, 2010.

I recently wrote a research-based blog on facilitated communication. It was a rather long article, I'll admit, but I thought it important to provide as much information about facilitated communication and what the overwhelming majority of studies and meta-analyses showed regarding it. It has, despite its popularity in some sectors of the autism community and its fervent supporters, been shown that the communication comes not from the individual who is nonverbal but from the facilitator instead.

What is a parent and what are educators to do? We want to help nonverbal individuals find a way to express themselves, to communicate their needs, wants, and desires.

There are other modalities that do not have the potentiality of being co-opted subconsciously by the facilitator.

According to Schlosser and Wendt (2008):

"Approximately 25%–61% of learners with autism present with little or no functional speech (Weitz, Dexter, & Moore, 1997) and may be candidates for augmentative and alternative communication (AAC) approaches to replace or supplement natural speech and or handwriting (Lloyd, Fuller, & Arvidson, 1997). Unaided AAC approaches include gestures, manual signing, and finger spelling. Aided AAC approaches include selection-based methods, such as graphic symbols, nonelectronic communication boards,speech-generating devices with synthesized and/or digitized speech output, and exchange-based approaches, such as the Picture Exchange Communication System (e.g., Mirenda, 2003)."

Perhaps some of the confusion in the wider community with what is meant by facilitated communication is the use of facilitation in the context of augmentative and alternative communication:


"It is understood that the primary aim of AAC intervention is to facilitate a child’s communicative competence through the use of multiple communication modalities that are by their very nature supplementing (“augmentative”) or replacing (“alternative”) natural speech (Light, Beukelman, & Reichle, 2003)" (Schlosser and Wendt, 2008).

Son et al. (2005) note that there are many available choices for AAC interventions and that there may be benefit in the nonverbal individual having a role in the decision of which intervention device to use, while noting the difficulty in determining which AAC will be the most effective for the individual.

There are problems, as others more illustrious than myself have noted, with autism treatments not being well vetted in the scientific literature before being implemented. FC is an example of this, but it is only one of many.

I understand the need, the desire, the impetus to do something, anything, to help children with autism improve their functional skills. I understand parents, educators, support personnel, and physicians employing a kitchen sink approach, while I might not agree with that approach.

We need to work better at coordinating researchers' efforts with the actual clinicians, practitioners, educators, and parents so that what is done boots on the ground is looked at in well-designed studies that can evaluate the effectiveness of the approaches being taken.

Even some widely used systems like PECS have not received sufficient research to validate them: "Results of this study reveal that the PECS is widely implemented with individuals having ASDs but without a strong empirical base" (Ostryn et al., 2008).

Does this mean we stop cold? No, it means that while we work to help our children, we look to what current research has to say and where there is clear empirical evidence that treatment modalities are not effective or cause greater harm, we steer clear of them. Where the research has not been done, but no harm has been substantiated, we proceed cautiously, and we advocate for getting that research done. We make sure that the treatments are plausible, as well. If it's too good to be true, well, come on, folks, it is. We educate ourselves about the scientific method, about critical thinking, about the body and how it works, about the brain and how it works. We read the scientific literature and we examine everything with skepticism.  We also proceed knowing the fallibility of our perceptions, our incredible ability to see what we wish to see, and to attribute causes inaccurately. As long as we proceed open-minded and willing to be proven wrong, we safeguard against falling into the woo and losing our way and in the process harming our children.

References

Ostryn, C., Wolfe, P., & Rusch, F. (2008). A Review and Analysis of the Picture Exchange Communication System (PECS) for Individuals With Autism Spectrum Disorders Using a Paradigm of Communication Competence. Research & Practice for Persons with Severe Disabilities33(1/2), 13-24. Retrieved from Academic Search Complete database.

Son, S., Sigafoos, J., O'Reilly, M., & Lancioni, G. (2006). Comparing two types of augmentative and alternative communication systems for children with autism. Pediatric Rehabilitation9(4), 389-395. doi:10.1080/13638490500519984.

Schlosser, R., & Wendt, O. (2008). Effects of Augmentative and Alternative Communication Intervention on Speech Production in Children With Autism: A Systematic Review American Journal of Speech-Language Pathology, 17 (3), 212-230 DOI: 10.1044/1058-0360(2008/021)

6 comments:

farmwifetwo said...

Actually I differ in opinion.

Every time you do "hand over hand" you do FC. Does that mean you don't teach any child - autistic or not - anything??

FC is a tool. Without FC my youngest son would not be over on his computer playing his own video games or over here playing tumblebooks or be able to dress himself. He wouldn't be able to print independantly with his weighted pencil. He wouldn't be mastering typing on the computer. Had FC not been used in the beginning and faded away.

Then there's PEC's... with PEC's he's able to use the toilet (that strip is gone b/c it's been mastered - mostly), wash his hands nor wash himself independantly. He follows the strips - beside the toilet, beside the sink, on the tub surround - until he learns it for himself.

Then there's the 'first/then' PEC card. That we now use verbally when there are a series of activities that must be completed before he gets what he wants. He understands the concept, he was taught it visually and now can do it orally and complete what is necessary first.

Tools.... used appropriately a tool can be used to teach with. Yes, we finally have enough words that we no longer need to use PEC's for basic communication. He still prefers using the "writing with symbol's" program for his personal writing. I truly don't care as long as he learns to "write". But back in K when he'd get upset, being able to point to what he needed in his PEC binder saved on a lot of meltdowns until he masted the words orally. He knew a lot of them from ABA the previous year.

I do not believe those that all of a sudden say "Look my child did". Speech, language and communication take time, they don't magically appear. I've done this twice - nonverbal to speech - both ends of the spectrum. So if someone claims that giving their 6yr old a device and "wow" he talks, they're IMO wishful dreaming especially if they are pushing the keys.

I am hoping to be one of those who's teenager magically learns to talk.... won't be magic... but a lot of hard work getting there.

KWombles said...

I think there's a huge difference in taking your child's hand and doing hand-over-hand to teach them (we all routinely do that for many things we teach them, like how to pour, how to use utensils, how to tie shoes, how to write). That's just not what I'm talking about, FW2.

So, no FC, the way Bilken and proponents are doing it isn't a tool. It's fraudulent. It's facilitator co-option and it deceives parents.

I'm talking specifically about Bilken's facilitated communication and the idea that a child who's been previously noncommunicative (period) all of a sudden, with the aid of a facilitator can write long grammatically correct sentences and suddenly do academic work. I'm talking about facilitator co-option of communication.

I'm talking about parents not falling for a facilitator working with a kid and the very first thing the kid communicates, ever, is "I love you, Mom." I'm talking about parents not being victimized by charlatans attempting to con them, subconsciously or deliberately. And especially, I'm talking about autistic individuals not being taken advantage of by these people, who move the autistic individual's hands and arms, who type communication and claim it's the autistic individual's, robbing that person of a voice while crowing they've revealed his voice.

So, my beef isn't with parents who teach children how to acquire new skills by using the traditional hand-over-hand method (as long as they aren't suddenly crowing that Johnny is writing critical analyses of Shakespeare, you know what I mean?) That just isn't what this is about. It's about Bilken's facilitated communication. I'll be reposting the FC literature review tomorrow, if you want to wait until it's up top, or you can do a search through countering and find it back in March.

Niksmom said...

I look forward to reading the re-post re: FC. I had looked into it at one point (a couple of years ago) but ismissed it bc it simply "felt" wrong. Then I began to run across more and more data which supported my intuition.

FW2, in this instance (if I may be so brazen as to speak for you, Kim?), Kim is drawing a very specific distinction between "facilitated communication/learning" such as you describe in HOH, prompts, etc, and "Facilitate Communication." The latter refers to a very specific metho of communication (note, I did not say learning). I know it's a gross generalization but think Ouija Board meets nonverbal child.

That being said, of course all teaching is a form of facilitation. The difference is whether you are teaching someone a skill they can then generalize to create unique and spontaneous "uterances" (to use the SLP parlance). FC does not do that.

Kim, is it possible for you to email the article re PECS? I'd dearly love to see it but am unable to access it. Thanks!

KWombles said...

Thanks, Niksmom, that's an excellent overview of what I was trying to get across.

I've emailed you the article. :-)

Niksmom said...

LOL, it seems my "d" key is sticky today! *oops*

Liz Ditz said...

I really wonder what effect the new generation of iDevices (pod, touch, pad, etc.) and the relatively inexpensive AAC aps like Prologue2togo, iCommunicate, MyTalkTools are going to have on kids with language delays and barriers.

You ciete Schlosser & Wendt from 2008 -- these new tools have exploded on the market. Compared to the older AAC speech-synthesizing devices, they are cheap enough for parents to experiment with without going through the cumbersome requisition process.

The iPad in particular seems extremely promising, as the screen is large enough that people with fine motor control issues have a larger target.