7/15/2011

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


Out of town right now, so using this as an opportunity to dust off old posts and remind readers that if it's too good to be true, it usually is. Facilitated communication is not only not necessary, it's co-option of the individual's freedom to communicate. Don't put words in your child's mouth; help them to learn to communicate independently to the degree they are capable. Have confidence that your child can and will grow and develop and lay the foundation to allow that independent growth.

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)

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