ABA and Neurodiversity: Not So Strange Bedfellows?

"I am not a puzzle, I am a person": This is the title of an article in today's Salon by Elizabeth Svoboda. The article examines the notion of neurodiversity and autistic culture and autism rights. Interviewed are a number of friends, including my co-blogger, Dora; Dana Commandatore, author of Michelangelo the Diver (which has occupied a prominent place in Charlie's room for some time); Kathleen Seidel, who writes the Neurodiversity blog (essential reading to understand the legal and scientific background of vaccine litigation; and many others.

It was just about a year ago that an article on neurodiversity appeared in New York magazine; the Salon article considers similar topics such as the need to "redefine autism as something to be valued and protected, not obliterated" and to focus on accepting autism and individuals on the spectrum as they are, rather than trying to change them and make them "normal" like "neurotypicals." Svoboda also considers "the general therapeutic approach to autism in the medical community":

Many autistic rights advocates have spoken out against applied behavioral analysis (ABA), the most common type of autism therapy, developed by UCLA psychologist Ivar Lovaas in the 1960s and '70s, with the goal of helping autistic children achieve "normal intellectual and educational" functioning. The therapy, which uses repetition and rewards to reinforce new skills, is geared toward extinguishing autistic behaviors such as "stimming" (making repetitive body movements) and failing to make eye contact. One sign of the treatment's success, Lovaas suggested, might be for school personnel to perceive an autistic child as "indistinguishable" from his or her normal peers.

Seidel (who has a child on the autism spectrum) notes that such approaches "miss the point entirely" and suggests that "[i]nstead of trying to coerce autistic kids to behave like 'neurotypicals,' therapists should focus on helping them deal more effectively with the non-autistic world." Commandatore, also the parent of a child on the spectrum, notes that "[s]afeguarding a child's dignity" and "teaching him to navigate a neurotypical world" don't have to be mutually exclusive:

While the autistic culture movement may come off as dogmatic at times, Commandatore says the question of how to raise autistic kids in the spirit of neurodiversity has no clear-cut answer. Her child-rearing strategies don't radiate from a single ideological core -- they're more cobbled-together, day-by-day solutions to various issues that crop up. Instead of trying to train her son out of his personality quirks, such as strong reactions to loud and sudden noises, she says, "We've given him headphones that he can use in public, these big 1970s speaker headphones. If he starts to panic, he asks for his headphones and we give them to him."

Commandatore's views about ABA and neurodiversity cohere closely with my own. My husband Jim and I grudgingly assented to Charlie doing ABA some ten years ago.

We're humanists---Jim's a cultural historian and I love literature and languages---and the view of human nature promoted by behavior scientist B.F. Skinner has always seemed inimical to our beliefs. We wanted very much to follow a less harsh-seeming approach and the thought of Charlie doing 40 hours a week of therapy seemed simply impossible. But the special ed program offered to us by the St. Paul Public School District, while staffed with kindly people, but made no real efforts to teach Charlie. Indeed, our first ABA therapists (most of whom were college students) turned out to be the most humane of all: Rather than just clucking their tongues and feeling sorry for Charlie, they sat down in the little purple chair beside Charlie and taught him; they sat beside him on the floor and brainstormed new ways to have fun. They laughed with Charlie, and Jim and I laughed too. They believed that Charlie was capable of what we were teaching him and also of much, much more.

Ten years later and Charlie is still doing ABA at school. Ten years of education helped him get through his recent hearing test with flying colors. The teachers who Charlie likes best (like his current teacher) have that same attitude of confidence about him: When they say, "he is really smart," they wholeheartedly mean it. Every single thing about Charlie's education----from the schedule books to the flashcards to the programs---is tailored to his needs and learning style, and his teacher keeps the lines of communication open with regular emails and phone calls.

Charlie's current teacher is remarkable, but not all of his past teachers and therapists have been. Indeed, more than a few who said they had "experience in ABA" did what seemed more like rigid, rote, 1970s behavior modification. Charlie floundered in such classrooms (and with one behavior consultant in particular) and some behaviors worsened. Yet, I don't think that that "ABA" Charlie received in some past classrooms was that different or worse than what you might find in more than a few autism schools and programs.

One of the main differences with his current program is that the teacher is well-trained and well-supported, with ready access to an ABA consultant when questions arise. She's also always thinking about Charlie as Charlie and is attuned to his sensory needs; she's aware of his need for intense physical activity, his ever-growing appetite, and burgeoning artistic ability. Aversives are never used; indeed, Charlie's current teachers understand how aversives can create more difficulties.

It's something of a cliché, but there's probably as many ways to teach individuals on the spectrum as there are individuals themselves. Certainly Jim and I are glad to have found a teaching approach that best enables Charlie to learn at this time in his life, and certainly we need to keep our minds open to other approaches, as Charlie grows and changes.

A teaching method is only so good as the person doing the teaching.

Image from The Whited Sepulchre.