Introduction by Yuval Levental: I am a person on the autism spectrum who critically analyzes autism advocacy. I hold a Bachelor’s degree in Electrical Engineering from Michigan State University and a Master’s degree in Electrical Engineering from ESIEE Paris. Other hobbies of mine include recreationally solving complex math puzzles, traveling, eating new foods, and learning about different cultures.
Content note: The following article contains a graphic depiction of violence, brought on by false allegations surrounding facilitated communication. It is important to discuss this possibility, as some major media sources still support FC without realizing its potential consequences.
As autism-related debates are becoming more widespread, the legitimacy of certain treatments are being called into question. Recently, one of the more interesting conflicts on Wikipedia involved a scientifically discredited technique for nonverbal autistic individuals called facilitated communication (FC). One of the points discussed was if autistic individuals who are known for their writings under FC should have Wikipedia articles. In the end, three articles of this type were deleted, as the works they cited weren’t considered to be scientifically reliable.
What is facilitated communication, and why is it ineffective/dangerous?
Facilitated communication (FC) is a scientifically discredited technique that supposedly helps nonverbal autistic individuals communicate. In this technique, the facilitator assists the autistic individual by holding his/her arm or hand and attempts to help them move to type on a keyboard or other device. The FC movement started in Denmark, but it was considered over there to be too unreliable. It was eventually brought to the United States by Douglas Biklen, a Professor of Education at Syracuse University (https://en.wikipedia.org/wiki/Facilitated_communication#History).
Double-blind trials eventually disproved many of the assumptions underlying FC. This technique has even been called “the single most scientifically discredited intervention in all of developmental disabilities”. Virtually all the major psychiatry and psychology organizations have produced written statements opposing FC. For instance, the American Psychological Association (APA) issued a statement in 1994 that there was “no scientifically demonstrated support for its efficacy.” (https://en.wikipedia.org/wiki/Facilitated_communication#Organizations_that_have_made_statements_opposing_facilitated_communication)
Unfortunately, before major organizations started speaking out against FC, there were several prominent cases where FC was used to claim that parents were abusing nonverbal autistic children. One of the most famous cases involved Betsy Wheaton, a 16-year-old nonverbal autistic individual and Janyce Boynton, her facilitator. Through FC, Betsy allegedly claimed that her parents were abusing her, which led to the police moving her and her brother to foster care. Betsy’s parents fought back and eventually proved that FC was meaningless in this case. However, Betsy’s brother committed suicide after killing his wife; he was reportedly never the same after the family’s temporary breakup (https://en.wikipedia.org/wiki/List_of_abuse_allegations_made_through_facilitated_communication and https://www.kansascity.com/entertainment/books/article58400683.html).
Which articles were deleted, and why?
The articles of Amy Sequenzia, Sue Rubin, and Benjamin Alexander were all deleted. They are nonverbal individuals that allegedly discuss autism in writing using FC. Sequenzia allegedly wants acceptance, and Rubin and Alexander allegedly want a cure.
When I started editing Wikipedia, I didn’t know much about facilitated communication. I just assumed that those articles were true, which is a very dangerous assumption to make. One problem is the language that the cited works use. For instance, CBS News wrote about Alexander that “Silenced by autism, a young man finds his voice,” which makes his writing sound authentic and legitimate (https://www.cbsnews.com/news/benjamin-alexander-silenced-by-autism-a-young-man-finds-his-voice/). I even decided to create a Wikipedia page for him, but later regretted it when I learned more about FC (https://en.wikipedia.org/wiki/User_talk:Wikiman2718#As_creator_of_the_Benjamin_Alexander_article,_I_support_its_deletion.).
After learning that FC is not legitimate, I discovered that the noted skeptic and medical professor Steven Novella once questioned Amy Sequenzia’s works under this technique, claiming that at the very least, he would have to meet her in person to discuss the legitimacy of her writing (https://theness.com/neurologicablog/index.php/facilitated-communication-persists-despite-scientific-criticism/). I added it to her Wikipedia page, which was controversial since some ND advocates thought it was “offensive” to question the status of her FC writings. Eventually, the claim stayed, but the deletion debates were up and coming.
Most of the credit for getting the articles deleted goes to the Wikipedia user Wikiman2718. He is interested in improving coverage of evidence-based practices, so he challenged the FC articles on Wikipedia. He believed that the articles about Sequenzia, Rubin, and Alexander were promoting pseudoscience and wanted them deleted. I was against this decision at first, but later believed that it was worthwile. There was a comment by Wikipedia user Alsee that made a good point (https://en.wikipedia.org/w/index.php?title=Wikipedia:Articles_for_deletion/Amy_Sequenzia_(2nd_nomination)&diff=prev&oldid=902945964):
“Even a top-line source such as New York Times would be severely called into question at the Reliable Source Noticeboard if the NYT published an interview or other information obtained via telepathy or channeling of dead spirits, without even commenting that the communication might be questioned, without giving any indication they even considered the issue and that they actively consider this case reliable.”
As a result, all the three articles were thankfully deleted. But I am still in shock that a substantial amount of media sources portrayed FC as legitimate in their cases. Because of the media’s monopoly in those cases and other autism-related matters, many people are afraid to discuss different perspectives surrounding autism, as indicated by this poll.
Addendum 7/24/19: Since I wrote this article, more articles that were based on the false claims of FC were deleted. Those are the articles of severely autistic individuals Tito Mukhopadhyay, Lucy Blackman, and Birger Sellin, who all allegedly communicated through FC, and The Mind Tree, a book allegedly written by Tito. Additionally, the articles of Naoki Higashida and Anne McDonald (who is not autistic, but has severe athetoid cerebral palsy) were also based on those false claims, so they were merged into other articles.