The additional complication is treatment is frought with trolley problems.The process that arrived at the "treatment" described in the article has much broader implications. It represents a tragic failure of any reasonable scientific process to validate the treatment - a treatment that is, by any measure, extreme and can cause irreversible damage. It reminded me of the Frontline documentary "Prisoners of Silence" (1993).
--
--
Prisoners of Silence : PBS Video. : Free Download, Borrow, and Streaming : Internet Archive
Facilitated communication (FC), a controversial, new technique which is profoundly altering the lives of people with autism and their families. Heralded by...archive.org
Facilitated communication (FC) has been heralded as a breakthrough technique for nonverbal people with autism. The method uses a helper to control the involuntary movements of an autistic person’s hand, allowing that person to type his or her thoughts on a keyboard. Thousands of people have begun using FC, often to communicate major life decisions like the desire to go to college or to move to a new home. But many scientists reject FC as simply not real and believe that it is the facilitator who is unknowingly controlling the hand of the autistic individual. FRONTLINE presents a comprehensive investigation of this controversial technique, interviewing the leaders of the FC movement, scientists, facilitators, and parents of autistic children and raises tough questions about the implications of its use for people with autism and their families.
--
Quick Summary: The facilitated communication was easily debunked with a simple double-blind test. Not a big deal if done early. However, Syracuse University started a Facilitated Communication Institute (now known as the Institute of Communication and Inclusion). Also, a father was put in jail on charges of sexual abuse of his autistic child based on the child's "testimony" through a facilitator. The documentary indicated the father was not supportive of the therapy and didn't believe it was useful. The facilitator made sure to extract a pound of flesh for his offense.
Interestingly, I found an article from the Atlantic (July 2016 - link follows) when I searched for the "Prisoners of Silence". It discusses and shows a video Apple showed in April 2016 as part of Autism Awareness Month. The autistic child was on an iPad application that allowed him to communicate ... with the assistance of a "communication partner". WTF? It's informative to read. They include an interview with the individual who provided the testimony in 1993 that wrongly put the father in jail, and she discusses her thought process at the time. It gives insight into how the human mind "works" when it wants so badly to help. It comes from a good place. She wasn't an evil person, but the results were evil. I can't help but think those promoting gender-affirming surgery for minors suffer from the same human condition as the facilitator. I believe it is a human condition, and none of us are immune to it. In high-leverage situations, this condition can have irreversible, catastrophic outcomes on the lives of innocent people. In the case of gender-affirming surgery on minors, it's our children. There's a good reason that the saying, "The road to hell is paved with good intentions", has been around for so long.
--
Why Hasn't a Controversial Method for Autism Communication Disappeared?
A technique that claims to help people with the condition express themselves with the help of a "facilitator" was scientifically disproven in the '90s.www.theatlantic.com
After the allegations were found unproven, and the case dismissed, Boynton was confronted with what she had communicated to authorities. “When I saw some of the stuff I wrote [alleging sexual abuse by the student’s father],” during the student’s interview with investigators, “I didn’t even realize what I’d written at the time,” Boyton said, describing the communication she had facilitated for the student. She now believes that FC is a self-fulfilling prophecy, a rationalization to resolve any cognitive dissonance such as what she experienced when participating in the police interrogation. “You don’t remember, you’re disconnected,” said Boynton as she described her thoughts during the investigative interview—an experience that she said draws parallels with the psychological concept of dissociation.
None of the training or materials Boynton had received in her FC certification course discussed the danger of how the facilitator’s goals or desires could influence the process. “There was an expectation to not doubt the authenticity of the person’s voice,” she said. “We were taught these individuals were so oppressed that we weren’t supposed to doubt their communication; if we doubted FC, we’re doubting the person.”
The expectation of validity, combined with the facilitator’s desire to do good, may be the secret to FC’s longevity, and illustrates the danger it poses. This psychological construction—Boynton likened it to an author creating a dialogue between characters or imagining a conversation with someone you know well—can have disastrous consequences, not just for the nonverbal individual’s own voice, but also for the people around them
--
Hypothetical: Let's assume there are 10 kids and treatment would make 5 of them more contented and 5 of them equally uncontented? Is it ethical?
Let's assume 10 kids, and 1 of them would be contented but 9 of them remain the same. Any different?
This time 10 kids, and 1 will be very unhappy more so if you did nothing, but 9 of them will be perfectly contented. Different?
Again 10 kids, 3 of them contented, 7 of them remain equally uncontented, but if you don't treat the 3 kids until they are adults, 2 of them will be even more unhappy because to dad 4 they are "obvious" but they could have been contented.
This time 10 kids, 3 of them contented (but only 1 unless you hit it early), and 3 will wind up even more disturbed because they regret the treatment? What if suicidal? The other 4 no impact.
10 kids, what if 5 could be perfectly contented (but you have to hit 3 of them early), and 5 will be even more miserable.
10 kids, 5 could be perfectly contented, but 2 will be suicidal if you hit them early, and 3 will just be no impact no mater what you do
10 kids, 3 are contented (1 will always be supercontented, but 2 will be suicidal unless you hit them early), 4 exhibit no change, 1 will be suicidal if you do anything to them, and 2 of them will regret it and be slightly worse.
