The Washington Post chooses a “feel good” story over science

The Washington Post recently published an article called “It took a woman with autism 25 years to find her voice. Now she’s telling her story.” The article is a review of the book “I Have Been Buried Under Years of Dust,” attributed to Emily Grodin, a non-speaking woman with autism. Unfortunately, the whole thing was written using the discredited technique, Facilitated Communication. The Washington Post has a short memory when it comes to dealing with FC. They’ve published pro-FC articles in the past. Freelance reporter Stuart Miller appears to have fallen victim to the myth that FC messages are real and not the words of the facilitator.

For those of you interested in writing a letter to the editor or to the journalist, I’ve attached a sample letter outlining some of the issues. Most likely a letter to the editor will need to be much shorter than the sample, so please use this as a jumping off point for your own correspondence. Feel free to include a link to our website: http://www.facilitatedcommunication.org

Talking points are also listed here in the FC Articles in the News section.

Guidelines to submitting a letter to the editor for publication are here.

Contacts:

• Stuart Miller smiller@journalist.com

• Cameron Barr, Managing Editor (News and features coverage)

cameron.barr@washpost.com

• Managing Editor (Diversity and inclusion)

krissah.thompson@washpost.com

Dear (Representative),

This letter is in response to a recent article in the Washington Post called “The Memoir ‘I have Been Buried Under Years of Dust’ chronicles one family’s struggles and victories.” The article promotes people with disabilities, which is a good thing. However, you may not realize it also dangerously promotes a discredited technique called Facilitated Communication. This problematic technique is known by many names, including, but not limited to Facilitated Communication, Spelling to Communicate, Supported Typing, Rapid Prompting Method or “RPM” and Informative Pointing.

The attraction of techniques like FC for vulnerable families in the US and around the world is that they appear to “work” with rapid results, providing parents with longed for results such as seeing their child getting their messages across and typing, for example, “I love you, mom” or “I love you, dad.” By comparison, evidence-based treatments that build up the person’s own language system take a long time and much dedicated effort on the part of parents who must painstakingly help the person with disability to learn language and literacy skills (which includes reading and spelling) and to use assistive technologies independently.

Individuals unfamiliar with Facilitated Communication or “FC” may not recognize the technique for what it is and get caught up in the emotion of these “miracle” and emancipation stories. Proponents constantly change the names of these techniques not because they differ, but to avoid the negative press associated with Facilitated Communication which has documented serious and preventable harms, including false allegations of sexual abuse, sexual assault, manslaughter, and maltreatment of people with disabilities.

With all forms of FC, a “facilitator” influences and controls the typed messages, not the person with disability. For over 30 years, proponents have repeatedly been given opportunities, under carefully “controlled” conditions, to provide evidence that the messages obtained during FC/RPM sessions represent the independent thoughts or “voice” of the person with disability, and not of the facilitator. In each and every instance they have failed to do so. Researchers have definitely proven that facilitators do not just have the “potential” of being influenced by the ideomotor response (sometimes referred to as the “Ouija Effect”), they actually control the messages due to the phenomenon. Indeed, FC is known to be harmful, and has been proven time and again to be the voice of the facilitator.

The important thing is, “who” is doing the typing, when the facilitator is holding either the person’s arm, or the letter board, effectively controlling the messages (even if unintentionally). Because of motivated reasoning on the part of facilitators (e.g., an overwhelming emotional desire to make FC “work”), the only way to determine the extent to which facilitators control messages is in activities where the facilitator is blinded to test protocols. Proponents refuse to undergo such tests and rely on measures that inadequately address authorship (e.g., observation, analysis of written output). Saying FC works because people using FC say it works is not proof that the typed messages are produced independently and without interference from the facilitator.

Dozens of controlled studies and eight published systematic reviews back up this claim. Because of the harms it can do, several major health, education, and advocacy groups supporting people with autism have position statements against the use of FC and RPM, including the American Speech-Language-Hearing Association and the American Association on Intellectual and Developmental Disabilities. The article suggests that Speech-Language Pathologists object to FC only because they “worry it may hinder verbal growth.” This is a misrepresentation of the ASHA and APA positions statements, which state lack of evidence as to its efficacy, facilitator influence, and potential false allegations of abuse as the primary reasons not to use the technique. Further, the continued engagement in discredited techniques is a violation of the rights of individuals with disabilities to have independent access to communication methods and techniques.

People continuing to promote and use FC do so without regard for the evidence, and without checking on who is creating or authoring the messages. Instead, they should be checking on the authorship before accepting the message as a genuine “communication” of the feelings, wishes or views of the person with disability. Ignoring or minimizing the large body of evidence that consistently shows facilitator influence over the messages produced, individuals and organizations charge hefty fees to parents attending workshops to “learn” the techniques. Through their actions, such individuals and organizations prey on the vulnerabilities of families who want the best for their children, and who are given a quick and ineffective technique instead of access to a proper independent form of communication.

Even if the individuals in the article are most sincere in their belief in FC, most facilitators do not understand consciously just how much they control the typing. Moreover, messages obtained using these techniques cannot be taken as the words of the individual with disability. In all likelihood, these are the words of the facilitator and not of the person with disability claimed to have written the book.

Reporters have a responsibility to do their due diligence in when it comes to reporting unproven methods and techniques. To do otherwise is to unwittingly continue to promote dangerous, ineffective, and pseudoscientific practices such as Facilitated Communication.