This is one of those stories that will not go away, and a recent NYT article is fresh evidence of that. The title is: An Autism Breakthrough, or an Illusion? The Fight Over Assisted Spelling.” I always approach such articles cautiously, bracing myself for the cringing experience of reading a non-expert butcher such topics in depressingly predictable ways. This article was not as bad as some, but still ultimately failed to correctly cover the topic. The tagline gives away the core problem: “Popular communication methods for nonspeaking autistic people have ignited a fierce debate over what counts as evidence of hidden cognitive abilities.” Has it really?
The authors summary of the two sides is reasonably fair. We have covered this topic a fair amount as well. The quick back story begins in 1989 with the introduction of facilitated communication (FC). The idea is that some children thought to have profound intellectual disability, including many in the minimally or non-verbal autism community, really have only a motor disability. They cannot control their speech or their physical movements sufficiently to communicate, but inside they may be intellectually intact, even brilliant. FC, therefore, uses a facilitator to hold the arm of the non-verbal client to help them spell out responses on a letter board. The technique seemed like a revolution, to the delight of many language therapists and parents.
But there was a problem – a question of authorship. Who is ultimately controlling the output, the client or the facilitator? There are many clues that should have been obvious to any objective person (but of course, the people involved were highly invested). Children who were never taught to read could suddenly write at an advanced level. They seem to have just absorbed reading and spelling without being taught, in some cases even foreign languages. And not only were many of them intellectually intact, they were advanced beyond their age.
In fact facilitator often feel as if the child is “reading their mind”, because they are spelling what they are thinking. This lead to The Telepathy Tapes, a popular podcast that claims these children are literally psychic.
Perhaps most devastatingly, if you watch videos of FC in action, in many cases the children are not even looking at the letter board (spelling by pointing at a letter board without looking is literally an impossible feat).
This all raised the serious question of authorship, which was eventually studied, and it was conclusively found that the facilitator are doing the communication. A 2014 systematic review concluded:
“Results indicated unequivocal evidence for facilitator control: messages generated through FC are authored by the facilitators rather than the individuals with disabilities. Hence, FC is a technique that has no validity.”
And that should have been that. But it wasn’t. FC continues, and further it was rebranded to similar techniques, such as the rapid prompting method and others, collectively referred to as spelling. They are all just variations of FC. In RPM, for example, the facilitator hold the letter board rather than the client’s hand. The ideomotor effect works in both cases, however. All the methods have one thing in common – there is a facilitator in the loop who is capable of influencing (and even completely controlling) the output. If it were true that these children just needed motor help, then why couldn’t a simply metal arm hold the letter board? Why does it have to be a person?
Getting back to the NYT article, the author does give a fair if quick overview of the scientific position. She doesn’t really bring it home, however, with the only firm conclusion that an objective person can make. Instead she frames it as a genuine dilemma. She doubles down on this narrative in the lead comment: “But at the core of the story is a persistent tension over what counts as strong evidence: rigorous studies or personal experience.”
I guess “tension” is a sufficiently vague word to give her cover, but combined with the “fierce debate” language used in the tagline it gives the impression there is actual scientific debate on this issue. There isn’t. This “tension” has been resolved for at least a century, and back by countless examples. Rigorous studies give us reliable information on which we can base conclusions and practice. Personal experience is overwhelmed with bias and illusion and cannot be the basis of reliable conclusion. At best they can generate a hypothesis to be tested – but they cannot test hypotheses.
So when it comes to “rigorous studies or personal experience” – rigorous studies win. No question, no debate, no genuine tension. The people who tout the superiority of personal experience simply do not like the answer that rigorous studies provide. It is that simple.
Back in May the NYT published another article on this issue, which gets it right, this one by Dr. Lutz, a historian of medicine and mother of an autistic child. She actually cites the rigorous evidence and the unavoidable conclusion – FC and all its subtypes do not work. Even worse than not working – they steal the voice from a very vulnerable population.
First, she correctly points out that resources used to back pseudoscience are directed away from methods backed by actual evidence (even if they are not the miraculous cures that parents want). But worse, facilitator are communicating in the name of these non-verbal people, even to the point that what the facilitator spells out is treated preferentially to what the child communicates in other ways. Imagine the frustration of trying to communicate a basic need, while someone else is falsely claiming who want something else.
There are other victims as well. The parents are victims because their process of dealing with the difficult situation as it truly is becomes short circuited by a dangerous fantasy. There are also many cases of adults being accuse, via FC, of abuse, some even being convicted and spending time in prison.
The stakes here are actually quite high, and we have a clear and unequivocal answer – these methods do not work, the facilitator is the true author, and the children these methods claims to help and just being abused. Such methods are terrible for everyone involved.
The wishy-washy false balance of this NYT article will expand this harm. The net effect of such articles are always to drive desperate parents in search of the false hope being presented. It is profoundly frustrating that even when rigorous science provides us a clear answer, we cannot fully put such nonsense to bed.
