Reporter's Notebook

The Brilliance of Autistic People: Your Stories
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Ron Fournier, whose son Tyler has autism, is compiling stories and reflections from readers on the spectrum and from their loved ones. Reach out to Ron here with your own experiences. And be on the lookout for his new book, Love That Boy.

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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.”

A new piece by Elizabeth DeVita-Raeburn on the use of “applied behavioral analysis” (ABA) is eliciting a lot of strong response from readers. ABA—“the longest-standing and best-established form of therapy for children with autism,” according to DeVita-Raeburn—was developed out of the behaviorist school (think B.F. Skinner and his use of rats and food pellets); it breaks down desirable behaviors into discrete steps, rewarding a child for completing each step along the way and discouraging errant behaviors.

But the popular method is controversial among a subset of autistic adults, advocates, and parents of autistic children:

They contend that ABA is based on a cruel premise—of trying to make people with autism ‘normal,’ a goal articulated in the 1960s by psychologist Ole Ivar Lovaas, who developed ABA for autism. What they advocate for, instead, is acceptance of neurodiversity—the idea that people with autism or, say, attention deficit hyperactivity disorder or Tourette syndrome, should be respected as naturally different rather than abnormal and needing to be fixed. ...

[Lovaas’] approach discouraged—often harshly—stimming, a set of repetitive behaviors such as hand-flapping that children with autism use to dispel energy and anxiety. The therapists following Lovaas’ program slapped, shouted at, or even gave an electrical shock to a child to dissuade one of these behaviors. The children had to repeat the drills day after day, hour after hour.

This illustrative video of Lovaas methods from 1981 does not contain slapping or electrical shock, but it does display a range of other techniques such as stern repetitive directives, food reinforcement, and the stopping of stimming:

(Here’s a much more contemporary video of an ABA session.)

In the comments section of DeVita-Raeburn’s piece, Suzanne Letso, the co-founder and CEO of Connecticut Center for Child Development, defends ABA against criticism, especially regarding its roots: “ABA programs have evolved and improved since the early work of Lovaas and others.” She continues:

Unfortunately, this article is very misleading about what ABA is and is not. ABA programs utilize positive reinforcement, not aversive practices, to change behavior. ABA programs customize intervention for each learner and make learning fun, not punishing.

ABA is not synonymous with DTI [Discrete Trial Training—a method of teaching in simplified and structured steps]. ABA is not just a treatment for autism. ABA is not a package of static programs. People interested in learning more about what ABA is and how it can be utilized … please go to apbahome.net or bacb.com or casproviders.org or balcllc.org

Another reader also attests to the evolution of ABA since the Lovaas days:

I’ve worked with hundreds of kids and adults on and off the spectrum for over 15 years using the principles of ABA; “unrelenting drills” were never used. I’ve taught kids skills such as sledding with their peers in their neighborhoods, eating at a restaurant for a grandma’s birthday, and clapping their hands to get attention instead of punching somebody or themselves. This article also shines little light on the thousands of studies that support ABA interventions in schools, homes, work places, and communities.

A parent of an autistic child is on the same page:

We have my 6-year-old daughter in ABA therapy 20-30 hours a week. She’s improved immensely, and they don’t use any aversives.

A reader presents a really interesting theory about autism:

The ABA treatment [discussed earlier by readers] dates back to a time when psychologists theorized that autistic people could not readily interpret social cues because their empathy was too low, owing to defects in their brains. Today there is a challenge to that assumption: They may have *too much* empathy, and so social interactions are too loud and frightening, causing them to withdraw.

Which is true? The answer should drive treatment approaches. It’s quite possible that the Skinner approach works superficially to produce specific desired responses but isn’t at all optimum.

There is a clue supporting the “too much empathy” theory. Autistic kids and adults tend to do very well in socializing with cats, dogs, horses, etc. Interacting with animals brings out more advanced socialization skills, which they can then use, to some extent, with other humans. It appears that they perceive less social threat from animals, from whom unconditional love towards kindly humans is typical. If autistic people instead have low empathy, this result ought to be very unlikely.

Too much light will blind you. Too much sound will deafen you. And too much empathy may be responsible for autistic withdrawal and a reduced capacity for interpreting social cues. This needs to be nailed down before we should be eager to grant blanket approval to ABA therapy. Skepticism and critical thinking are warranted.

If you’re autistic and can personally attest to this connection, please send us a note.

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