Facilitated Communication: The Fad that Will Not Die - CSI

Having lost the scientific battle, Biklen and other FC proponents largely sidestepped the academic challenge in favor of an appeal directly to parents and family members—those most hungry for good news.

Hasn't enough damage been done?

That should have been that. If ever a treatment was unequivocally discredited, FC was it. Most scientifically-minded practitioners assumed that FC had been completely vanquished. Nothing could be further from the truth. An important article published in Evidence Based Communication Assessment and Intervention in February makes clear that FC never died. It was simply repackaged to make it easier to promote after the debacle of the 1990s.

The authors of the article, Scott O. Lilienfeld, Julia Marshall, James T. Todd, and Howard C. Shane, give a detailed account of what happened to FC after its rise and (apparent) fall in the 1990s. Summarizing the results of several surveys of parents and professionals they find:

… FC use remains widespread in many quarters, with a range of current use post 2000 ranging from 1.6% to 9.8% of children with autism. The findings of Price (2013) further suggest that many students who specialize in communication disorders believe FC to be effective for autism.

What? How did this happen?

Lilienfeld and his colleagues show that, while those convinced by the data moved on to other therapies, the proponents of FC never gave up. Douglas Biklen of Syracuse University is the most prominent supporter of FC in the United States. His Facilitated Communication Institute at Syracuse has been renamed Institute on Communication and Inclusion, and in 2012 it received a $500,000 John B. Hussman Foundation grant to support FC research, training, and dissemination. The University of New Hampshire’s Institute on Disability has been a loyal supporter of FC since the 1990s, and regularly sponsors meetings of an FC “skill builders” group.
As suggested by the removal of the phrase facilitated communication from title of the Syracuse institute, FC’s survival was helped by renaming and repackaging an old product. FC is now commonly called “supported typing” or “progressive kinesthetic feedback,” and a new variation on FC called “rapid prompting” or “informative pointing” is gaining in popularity.

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If a pill for autism could be found, all of this pseudoscience would disappear. But there is no pill. Applied Behavior Analysis (ABA), the most validated and effective treatment for autism, is onerous to administer, and, although it benefits all who receive it, ABA is not a cure. Studies show that fewer than half of children who receive ABA achieve typical age-appropriate educational levels. As long as there is no pill for autism, parents longing for a quick and more complete solution to their child’s condition will always find the promise of FC and other pseudoscientific therapies strongly appealing.

The narrative that Lilienfeld and colleagues lay out is extremely troubling. Under normal circumstances, it is difficult enough to fight the tide of pseudoscience and irrationality, but these are not normal circumstances. Here we have the strong pull of parental hopes combined with professional interests and cultural politics. And the stakes are extremely high. Advocates for FC suggest that critics are guilty of discrimination and the suppression of free speech, but without evidence that FC works, its advocates are engaged in a much more pernicious enterprise. In the interest of producing fake college graduates, they have substituted their own speech for that of the person with autism. Rather than honoring these individuals, they have erased them. Worst of all, while chasing a fantasy, the purveyors of FC have wasted years of valuable time that could have been spent on more effective educational and treatment methods. If there is a bright side to all this, it is that Lilienfeld, Marshall, Todd, and Shane have done great service by showing us how much work we have yet to do.

Facilitated Communication: The Fad that Will Not Die - CSI