The Quack of the Gaps Problem
Facilitated communication, autism and patients’ rights
This past April 2, on World Autism Awareness Day, Apple released a heartstrings-tugging commercial depicting an autistic boy typing, in part with the assistance of a facilitator, a message on an iPad that voiced: “So many people can’t understand that I have a mind. All they see is a person who is not in control. But now you can hear me. The iPad helps me to see not only my words, but to hold onto my thoughts.”
The commercial was surprising because this system of “facilitated communication” (FC) was thoroughly discredited in the 1990s. Facilitators had used plastic alphabet keyboards or portable typing devices, and in various videos—for example, the 1993 Frontline episode “Prisoners of Silence”— you see children who are not even looking at the keyboard as facilitators direct their typing or facilitators moving the keyboard under a child’s hand to produce the proper keystrokes. The technique was an academic curiosity until FC-generated messages included graphic descriptions of sexual abuse by families or caretakers of numerous children. Charges and lawsuits were filed, and courts needed scientists to determine who authored the accusations—the children or the facilitators?
Howard Shane, now director of the Autism Language Program at Boston Children’s Hospital, and Doug Wheeler, then at the O. D. Heck Developmental Center in Schenectady, N.Y., conducted independent controlled experiments in which autistic children and their facilitators were shown pictures of either the same or different objects while blinded to what each other saw. What was typed was always and only what the facilitator saw.
Since then, as Emory University psychologist (and Scientific American Mind adviser) Scott O. Lilienfeld, an expert on pseudoscience in psychology and psychiatry, told Emory’s eScienceCommons blog, dozens of controlled studies have unequivocally concluded that FC “doesn’t work.” Worse, “the false hope buoyed by discredited therapies can be cruel, and it may prevent people from trying an intervention that actually could deliver benefits.” In a 2014 paper Lilienfeld co-wrote with Shane and others on “The Persistence of Fad Interventions in the Face of Negative Scientific Evidence” in Evidence-Based Communication Assessment and Intervention, a list of failed autism treatments included gluten-free diets, antifungal interventions, chelation therapy, nicotine patches, testosterone, marijuana, camel milk, weighted vests, magnetic shoe inserts and even bleach enemas.
Call it the Quack of the Gaps problem: gaps in scientific knowledge are filled with anyone’s pet “theory” and corresponding “treatment.” When the evidence is lacking, proponents accuse skeptics of being closed-minded or of using hate speech. At Syracuse University, where FC is still promoted through the Institute on Communication and Inclusion, 28 faculty signatories issued a statement supporting FC in response to a series of critical articles in the university’s newspaper, the Daily Orange, proclaiming FC “a fundamental right” and that these studies “are based on the foundation that people who type to communicate have been ‘scientifically’ labeled as intellectually lesser and thus what they type cannot possibly be attributed to them.” So bias caused the negative results. “We must recognize that this argument has a history that spans groups of people in the U.S., a history of ‘scientific’ claims stating that … women are intellectually inferior, Blacks are intellectually inferior … these kinds of ‘scientific’ claims built upon intellectual inferiority are offensive and wrong.”
What is offensive and wrong is promoting a pseudoscientific technique such as FC as “scientific” and responding to skeptics by accusing them of bigotry. As for rights, what about the rights of the nonverbal Australian man whose facilitator, Martina Susanne Schweiger, admitted in court in 2014 to sexually molesting him in 2011, when he was 21, because, she said, through FC he said he loved her? Or the rights of the then 30-year-old African-American man with severe mental disabilities whose facilitator, the Syracuse-trained Anna Stubblefield, was sentenced to 12 years in prison in 2016 for sexually assaulting him in 2011, after she determined through FC that they were in love? Or the rights of the many loving parents and caretakers wrongfully accused of sexual abuse purely through FC?
Yoking the rights of autistic children to FC is self-serving sophistry. People with autism have the same rights as everyone else regardless of their communication skills. Rights are not vouchsafed only to those who can communicate, and, of all people, university professors should know that. Shame on them.
August 3rd, 2016 at 12:39 am
It is indeed a shame when supposedly intellectual people blindly succumb to the pressures of the ignorant, in the hopes said people will be spared harassment from the also said ignorant. It has come to be a burden to explain yourself to vocal fringes who insist upon unreasonable accommodations. I feel for the families affected by special needs circumstances, but feeding them false hope instead of meaningful dialogue is, at the end of the day, a tragedy. I offer no panacea, but parlor tricks are unfulfilling distractions with empty promises.
August 3rd, 2016 at 12:59 am
Why is FC still considered by anyone as a means of communication anyway? Modern assistive technology (or even the low-tech “blink at a card” technique used by the author of ‘The Diving-Bell and the Butterfly’) can enable the most profoundly disabled people to communicate purely with eye movements, or tiny muscle twitches. Has Stephen Hawking ever needed to use FC?
August 3rd, 2016 at 4:32 am
The a broader note.
Why do skeptics enter into debate with some quacks eg religion, truthers or vaccine and yet not others eg tooth fairy, flat earth, white supremacists?
What is the criteria to engage, challenge and best down?
Curious where with limited resources where do you spend effort to promote science?
August 3rd, 2016 at 5:29 am
@awc I would think it comes down to the nature of the matter in dispute. Tooth fairy? Has anyone anywhere made a serious claim that the tooth fairy was anything other than a childhood fantasy propagated by parents who thought it was cute? The preponderance of scientific evidence proving that the earth is not flat leaves little open to debate and is so firmly established that it would be a waste of time debating it, though supporters of flat earth do. White supremacy is founded on bigotry, no science involved. Religion on the other hand, and the dogma it rests upon, is vocally promoted as the touchstone and ‘ultimate truth’ where it conflicts with scientific evidence. The purpose of debate in this instance is to hopefully shed some light on the fallacy that faith can ignore scientific evidence and that a whimsical invisible being who randomly chose to bend the physical laws that it presumably established to produce a world full of intelligent beings who have to disregard the proddings of intellect and believe fairy tales is just an emotional crutch and means of control by authority figures.
August 3rd, 2016 at 5:44 am
I totally remember the hype about FC back in the late ’80s or early ’90s and I remember thinking from the perspective of someone who used a keyboard all day most days that it was ridiculous. To see a barely functioning person who couldn’t even sit up unassisted looking in a random direction and blindly typing out words and (mostly grammatically correct) sentences was way beyond the limits of believability. It was incredible that anything like that could get a serious glance from anyone in the scientific community. When all the sexual abuse related comments started coming out it only served to fuel the witch hunt for Satanic cults ritualistically abusing children and challenged people. It came as no surprise when it was proven by scientific methodology to be nonsense. It also served to highlight the importance of relying on scientific proof over anecdotal evidence, the dangers resulting from the latter are sadly very real for those who were ‘incriminated’ by this voodoo.
August 3rd, 2016 at 7:21 am
Bravo once again, Mr Shermer. Thank goodness we have you to shake up those who insist on keeping their heads firmly planted in the sand. Keep up the good work! We need people like you.
August 3rd, 2016 at 8:14 am
The main reason for me being a skeptic is to confront
Newage flapdoodle ,especially practicioners of “liberal”
religions who pat themselves on the back for being tolerant of almost anything while actually being rigidly dogmatic in this viewpoint.
In their typical illiterate jargon, I am often labeled as being “close” i.e. “closed” minded and labelled as a killjoy or grouch when I don’t support them in mindless anti-science flapdoodle.
In real life I find the best approach is to say
” Hmmm. That sounds interesting..tell me more about that !!”
sic transit
Dr. Sidethink Hp.D
August 3rd, 2016 at 9:19 am
This is no surprise. Look at the ‘Hypnosis’ industry that has once again returned and flourished despite being debunked over and over again. In a few years we will probably see ‘Repressed memory’ make a comeback.
August 3rd, 2016 at 10:19 am
I appreciate this article. My sister works for a NGO that trains disabled people for jobs suitable for their developmental level. Let’s not lump all autistic people into one category – there is great diversity in the degree of autism as well as the other mental abilities (e.g. some autistic people are very smart – like Rain Man – but most are mentally retarded). For many autistic people, the problem is they get overwhelmed with sensory input and their peculiar actions are a way to cope with it. Therapists who work with autistic people try teach teach them techniques that allow them to live as normal of life as possible. So FC doesn’t work as well as they first thought – or maybe it only works for a few autistic patients?
BTW: There is a book called _The Curious Incident of the Dog in the Night-Time_, written by Mark Haddon. It’s a first person narrative from the perspective of a mildly autistic teenager. Therapists who work with autistic patients say it is very true to life – and math geeks will find many wonderful ‘Easter Eggs’ in it, including a lucid discussion of the Monty Hall Paradox.
August 3rd, 2016 at 10:29 am
The procedures used to debunk FC in the 1990s are identical to those used nearly a century earlier to debunk the claim of Wilhelm von Osten, that he had taught his horse, known as “Clever Hans,” to read and solve simple arithmetic problems. At the time, the story was headline news throughout the world, just like FC was when first announced.
To test von Osten’s claim, psychologist Oskar Pfungst devised the elegantly simple procedure of showing stimulus cards to either Hans or von Osten. When only von Osten saw the cards, Hans’ responses, taps of his hooves, were almost always right. When only Hans saw the cards, his responses were almost always wrong, but for a small number that would be predictable by chance.
The only real difference between then and now is that von Osten probably had deluded himself into believing that he really had a thinking horse. The current “experts” in FC could not possibly be completely ignorant of these basic scientific control procedures, so that their continued support of FC can only be malicious and self-serving.
August 3rd, 2016 at 3:39 pm
Bad Boy Scientist: You missed the point: It has been proven beyond a shadow of a doubt to be pure BS.
August 3rd, 2016 at 5:13 pm
Dan Vignau Says:
“Bad Boy Scientist: You missed the point: It has been proven beyond a shadow of a doubt to be pure BS.”
What point has been missed?
What is the antecedent of “it”
the mystery point??
( syntax irregularity looms here!! )
How has it been disproven?
I used to be a Debate Judge for the National Forensics League.
The presenter of an argument of this type would have got the presenter sent home with a note to the Principal of his/her High School
Dr.S
August 3rd, 2016 at 5:57 pm
This is a response Bad Boy Scientist’s question of whether FC can help some subset of autistic people. Those who are too profoundly disabled to learn to read will not be able to spell words out on a keyboard- even with an assistant holding the arm/hand doing the typing. Autistic people who can read are able to do their own typing. Autism doesn’t interfere with the ability to type.
And considering the horrific sexual accusations that FC generated that turned out to be unfounded- and sexual behavior towards autistic people who had no way to communicate No, combined with the lack of a reasonable hypothesis for why holding an autistic person’s elbow or hand would unlock otherwise unavailable communication skills, FC appears to be a terrible thing to introduce to desperate families of profoundly disabled autistic people.
August 3rd, 2016 at 8:19 pm
I’m surprised that someone in APLs marketing or their agency didn’t blow the whistle on this BS, but then Steve Jobs went top his grave as a result of ‘feelz’ medicine, so maybe the disease it not cured within the corporation.
I have to admit a lack of sympathy for those who duck treatment proven by evidence and opt for magic; they get what they deserve.
August 3rd, 2016 at 9:40 pm
I’m surprised that the advertising people employed by Apple were sold on the effectiveness of FC, since a few strokes on my I6 deliver up articles on Wikipedia (excellent!) and on Slate which mount devastating attacks on the technique. “Facilitated Communication pseudoscience harms people with disabilities,” reads the Slate headline. As is common with proponents of a pseudoscience, a refutation of a claim is always countered by a qualification of the claim. This process of reductive qualification never ends, and the claim the FC works for some subset of those with autism is to be expected. (And also can easily be disproved.)A similar situation arose about vaccination. When autism rates rose even when thimerosal was deleted from vaccines, the antivaccination people countered that is was because physicians were using old stocks of vaccine. When this was shown not to be the case, another reductive ad hoc claim was proposed. Etc. Etc.
Of all the rhetorical fallacies utilized by academics, the ad hominem device is the most favored, because it can be formulated in such a compellingly elegant fashion. Opponents of FC are racists and misogynists, i.e., bad people, and there is no need to examine the truth claims of BAD PEOPLE.(Actually even bad people can make truthful claims.)The analogy with so-called N-rays, proposed by the French physician Blondlot in 1903, is clear. Those doubting the existence of N-rays were accused of being anti-French.(There is a great Wikipedia article on this also.)
August 3rd, 2016 at 10:44 pm
As someone who has been an advocate for people with intellectual and developmental disabilities for 40 years, I remember FC and the false promise it gave to parents. I understand the desire of people who want to believe that it works. I had one parent that was totally convinced that their child was communicating to them through FC. When I suggested a simple test, “Ask your child something only they would know, i.e., “What did you have for breakfast this morning?” When their answer was wrong, the parent still Wanted to believe. It took many attempts to convince them otherwise.
For every good intentioned person trying to help, there are 50 trying to make a quick buck.
P.S. Please learn and use People First language. It does reflect on your own intelligence.
August 4th, 2016 at 5:13 am
I could never justify pursuing a pseudo-scientific pursuit such as FC, but I can understand why a person would pursue it. When confronted with something horrible such as committing yourself to the overwhelming possibility that your child will be autistic for his / her entire life, especially when the case of autism is severe, then anything that offers hope is a relief when science cannot provide immediate assistance.
In fact, this is the reason that faith wins out over science with a preponderant amount of people who perceive the shortcomings of science or medicine, when people with Stage 4 pancreatic cancer, for instance, would latch onto prayer or any elixir that offers hope of a cure or prolongation of life. Faith makes you feel good and gives immediate hope, the sense that you, personally, had a change to take control over fixing a situation that seemed irreparable. Science and medicine just seems so complex and contrived for some.
Again, I’m not justifying this type of thinking in terms of its accuracy and reliability. I’m only saying that faith in the absurd offers a potential solution to the desperate, and will always do so as long as there are people who possess untenable emotional drives that cause them to make absurd choices. They’re not bad people; they just may make bad choices. There are consequences that occur because of these bad choices, children who suffer, for instance, when denied a vaccination that could have prevented a crippling disease, and yet even when presented with evidence of the preventative effects of science and medicine, there are some that will deny them just because of distrust, upbringing, lack or education, or desire to seek more immediate solutions, which are offered by a few lines out of scripture and a few prayers to boot
August 26th, 2016 at 11:46 am
Skeptic Michael Shermer presents ten major arguments for the existence of God — and counters each one. Skeptic Michael Shermer presents ten major arguments for the existence of God — and counters each one.