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.
Many people use FC as a teaching tool to eventually reach independent typing. I have witnessed this myself. When you take a stance that the person in front of you is intelligent and competent and their is trust between the typer and the typing partner learning and communication can take place. The “scientific” studies that debunked FC likely did not have this in place lacking human trust. Something not easily created in a sterile scientific setting. If you were in my shoes you too might have chosen to abandon “scientific” ABA methods that taught my daughter ZERO because she has motor dyspraxia and give it a go with an unproven technique. My daughter has experience freedom from the grips of loneliness because we dared to go against the grain! You can feel her push towards the letters with the thrill of telling us what is on her mind. The key to good practice methods is that the person assisting only pulls away from the keyboard and never in the direction of the keyboard. It’s not rocket science! When you feel the person pushing against you and aiming towards specific letters and using the delete key to fix their mistakes you know it’s genuine.
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Actually, there is so much evidence about the efficacy of these communication strategies but we must look beyond faulty IQ tests and behavioral obsessions (ABA) to understand the true science of the autistic brain and the apraxia that so many nonspeaking individuals experience. Have you seen the autism neuroscience research of Dr. Elizabeth Torres? Torres’ is undoubtable the most scientific and progressive exploration of the movement differences identified by the likes of Dr Anne Donnellan, Kim Davis, and others 30+ years ago. Some chose to ignore and shove the early research under the rug because it didn’t align with the prevailing misassumption that “not speaking plus low IQ scores equals low cognition and lack of language”. If we believe that assumption, then our research is not going to ask the right questions and is going to unknowingly strive to disprove anything that suggests these individuals might have intact language and a miserable life without access to innovative communication strategies outside our understanding. It’s time to #rethinkautism, listen to the overwhelmingly loud voice of thousands of nonspeaking and dyspraxic children and adults all across the world who are consistently describing similar brain-body struggles and successfully responding to innovative sensory-motor and co-regulation strategies and supports, including those for purposeful pointing at letters. Let’s stop fearing the skeptics with their 40-year-old self-serving rhetoric, discrimination, and censorship of our nonspeaking community members! Let’s thank those among us who kept asking questions, better and better questions, to help discovery better answers and better outcomes for this highly misunderstood, underserved, and underestimated population. The tide is changing and, frankly, Wikipedia is irrelevant. Dr. Casanova, please take the time to meet with and LISTEN to someone who spells to communicate with best practice technique and a highly trained and familiar communication and regulation partner. You might learn something very valuable many of those who dispute FC have refused to understand.
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Are both of you saying that intuition and a few anecdotes are more worthwhile than many debunked claims? Facilitated communication has been called «the single most scientifically discredited intervention in all of developmental disabilities». For instance, this entire list https://en.wikipedia.org/wiki/List_of_abuse_allegations_made_through_facilitated_communication
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Congratulations on deleting these folks from Wikipedia. Better to presume their incompetence, I guess, than to observe and test them, or God forbid, attempt dialogue. Because, FC: QED.
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Yuval – in your one comment you mention the Wikipedia article «List of abuse allegations made through facilitated communication.» In reply I will post here a statement I wrote about 3-1/2 years ago – » I am very concerned that probably about 99% of nonverbal persons, with or without autism, do not have an effective means of communication and need to be protected from horrendous amounts of serious abuse. The sensationalism of extremely rare cases of abuse involving FC [Facilitated Communication] (while there actually are more important primary causes of any such rare abuse) seems to cause almost everyone to overlook the much more serious tragedies of numerous serious abuse of nonverbal persons who have no effective means of communication or any alternative protection.»
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