The Battle Over a Controversial Method for Autism Communication, Cont'd

Jim Elliott—a long-time reader contributor to Notes and one of the core members of Ta-Nehisi’s old Horde—just wrote a long commissioned piece for The Atlantic criticizing “facilitated communication,” which purports to enable people with severe autism to communicate through a “facilitator.” Here’s Jim:

[Dillan Barmache, a nonverbal teen with autism, is shown in the above video] typing into a device held by a woman, his “communication partner,” who gently pushes the keyboard back against his finger as he types. This pressure, which allegedly helps him to organize his sensory system and motor planning, is a hallmark of Rapid Prompting Method (RPM), what some experts argue is a form of “facilitated communication”—a technique that persists in spite of overwhelming evidence that discredits it. Such partners—alternatively called “facilitators,” among other terms—are not akin to translators, who merely take on valid means of communication and frame it into another, but are the means of communication itself.

A reader, Lisa, responds to Jim’s piece:

I think this is a giant over simplification of RPM. It’s primarily a method of education. It’s what drew me to it for my son, and it’s the only thing I could find that suggested he could have a rich education, and an age appropriate one at that. I think parents find it and keep doing it because it works and because they know that their kids aren’t empty thoughtless shells, that there’s more to them and they want more for them than learning the same preschool level skills over and over again year after year in ABA [applied behavior analysis] and special education.

I think professionals will come around eventually when they start to realize how much motor challenges are a part of non-verbal autism. Until then, parents will have to decide for themselves, trust their gut, and keep moving forward.

Jim replies to Lisa:

In the words of creator Soma Mukhopadhyay, RPM “is academic instruction leading towards communication for persons with autism.” The method, which is highly expensive and largely secretive, relies upon auditory and physical prompts to provoke a response from the autistic student—hallmarks of derivations of facilitated communication. Rather than address the authorship concerns that arise from prompting, Lisa instead relies upon a classic evasion of FC advocates: That denying the validity of communication through RPM renders her child an “empty thoughtless shell.”

ABA—the umbrella term for applied behavior analysis and most often used as a shorthand for the “Lovaas method" or “discrete trial”—spent a great deal of time as the dominant method for teaching discrete tasks to children with autism. The method formed the basis for a variety of derivations, but it remains popular in itself because it is easy and cheap to do. Interventionists do not even require a college degree. (ABA originally called for a large number of instructional hours.)

In my experience, “discrete trial” has diminishing returns. Of the autistic students I’ve worked with, maybe a third of them experience success through the method, and maybe a third of those are able to generalize the skills they do learn to multiple environments. The problem here is that many behaviorists have decided that because some forms of augmentative and alternative communication (AAC) share hallmarks of ABA (such as the Picture Exchange Communication System), these behaviorists think they can replace speech-language pathologists and incorporate these methods into their lessons, often without training or consultation with a licensed speech therapist. I can certainly appreciate parents looking for alternatives to this form of ABA; its utility starkly diminishes after about mid-elementary school age.

Which leads to the problem of FC’s co-option of AAC. AAC is, at its heart, a variety of supplemental communication methods that are clinically testable. They are not meant to replace or supplant other forms of communication. They are tools designed to foster independent communication in a manner comprehensible to people in their daily lives.

Jim also went back and forth here with another reader, Arthur, who says he has “extensively read up on prompting—for over 20 years concerning FC and for over 35 years since I did ABA with my own son starting in June 1980 (but stopping in August 1985 after he was severely traumatized by ABA).”

One more reader for now:

I am a Speech Language Pathologist from Australia and I can say with complete conviction that facilitated communication with people with autism is completely and utter nonsense. Not only is it scientifically invalid, when you really think about it, it is completely illogical.

In my experience, people who use facilitated communication can apparently spell near perfectly. However, if that were true, they’d be the best spellers and writers in a whole cohort of people diagnosed with intellectual disability and autism. I know FC proponents like to argue that the person was misdiagnosed in the first place, but when you think about it, that can’t be true, can it? Why would a large percentage of people with autism grow to have diagnosed intellectual disabilities (many are verbal) whilst these non-verbal people don’t?

Secondly, non-verbal people have so many opportunities to show their literacy skills. FC “users” inevitably end up saying they learned to read and write from street signs and ads and not in school. This is not how literacy is learned and is absolutely impossible.

There are many people who say little, but can write completely independently. If they have an intellectual disability, it is rarely conversational. Literacy and communication are not necessarily connected for some people. Just because someone can spell well, doesn't mean they can construct sentences that flow just like a conversation. Yet we never hear of FC people just typing movie quotes or the names of all the DVDs they have at home.

Organisations that continue to advocate for FC should be ashamed. True acceptance and understanding of non-verbal people should come from appreciating the alternative ways that they communicate, not trying to cling to the desperate hope that we are actually all the same.

RPM stands for Rapid Prompting Method. The second word in the method states exactly what RPM is; non-verbal people with autism are prompted by a facilitator. As a teacher of students with autism, I have come across this method and find it to be junk science. If a person cannot touch a letter board independently, then they cannot communicate. Unfortunately, there are parents who are desperate and truly believe that their child can communicate using RPM.

I had the opportunity to observe Soma (the inventor of RPM) work with a former student of mine who at best worked at the level of a two year old. Soma prompted him all the way, but managed to convince his mom to hire a facilitator to work with him. The facilitator charges an obscene amount per hour and somehow still has the mom believing that her son is now communicating by spelling and comprehending reading at a high school level when being read to. The truth is her son cannot even follow a one-step direction.

Soma is a fraud and so are the facilitators, and they need to be stopped from taking these naive parents’ money. They are preying on parents who have the most severely disabled children and giving them false hope.