ABA and Neurodiversity: Not So Strange Bedfellows?
Published April 27, 2009 @ 12:25AM PT
"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.
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Comments (14)
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Author
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Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.
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"It's something of a cliché, but there's probably as many ways to teach individuals on the spectrum as there are individuals themselves."
Amen to that. Now, if only we could convince the community, educators, funding sources, professionals and "professionals", and lawmakers to realize it.
Posted by Jen Niebler on 04/27/2009 @ 02:39AM PT
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I just read the Salon article and the many comments. There were many asinine comments (as always), who misinterpreted neurodiversity to be essentially equal to doing nothing and leaving autistic kids alone to do whatever they want. The article itself, I thought, was clear that this is not the opinion of neurodiversity advocates. In fact, we do so much work advocating for safe and helpful treatments and services. Why do people over-generalize? How can they call us mind-blind when they are the ones not listening to the words we explicitly say?
On another note, Kristina, I agree with you and Commandatore about there being good and bad ABA. Bad ABA is nothing less than abuse and torture, and good ABA might benefit the autistic's quality of life. Then there's ABA that's somewhere in between, not beneficial, but not outright dangerous, which may simply be energy, time, and money wasted.
Furthermore, regarding the comments to the article, why is it so difficult for people to spell Aspergers?
I suppose, if one had never seen the word printed but only heard it spoken, that the spelling "asbergers" or "asburgers" might be considered a logical mistake.
But "asperbergers"? Come on, people.
I also disagree with the notation in the article that "neurotypical" is derogatory. Sure, it can be used that way, but the word itself is neutral and simply descriptive. It carries less hierarchical power than the word "normal".
Posted by Katie miller on 04/27/2009 @ 07:46AM PT
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I've noted the same misspellings/misrenderings of "Asperger's"----reminds me of people thinking "artistic" when I say "autistic."
Posted by Kristina Chew on 04/27/2009 @ 04:45PM PT
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I'm not sure how much the leaders of our country have these posts on their radar, especially President Obama. I'd like you to re-address the 'Autism Czar' appointment the President promised us during the campaign last year. I for one was hoping for something REALLY big during Autism Awareness Month.
Posted by John Kirton on 04/27/2009 @ 07:47AM PT
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He still has a few days but it doesn't look like anything _that_ big is in the offing.......
Posted by Kristina Chew on 04/27/2009 @ 04:45PM PT
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@Jen. "It's something of a cliché, but there's probably as many ways to teach individuals on the spectrum as there are individuals themselves."
I think Jen says it best.
To have to worry if you are raising your child politically correct is so complicated and sad.
Posted by L I on 04/27/2009 @ 08:50AM PT
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Michelle Dawson's letter to Ms Svoboda:
........"I've read your article about the so-called "autism culture movement," something I am not involved in. In this article my actions are falsely characterized then commented on. At no point was I contacted or interviewed".......
Posted by jypsy norman-bain on 04/27/2009 @ 08:52AM PT
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sorry..... link HERE to Michelle's letter to Ms Svoboda
Posted by jypsy norman-bain on 04/27/2009 @ 08:54AM PT
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thank you----thanks to Michelle.
Posted by Kristina Chew on 04/27/2009 @ 04:46PM PT
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I guess we've been very fortunate. Our experience to date with ABA has been very positive. Actually, our experience with all of our kids' teams - teachers, aides, therapists, psychologists, social workers - has been nothing but good and I think the main reason is that these talented, caring professionals see our children as people to be encouraged and supported, not as a disorder to be fixed or written off.
This is certainly a timely article for our household. "Labels" has been a topic of conversation in our house a lot lately, it seems, with our 12 year old (probably because he's in middle school and figuring out where you fit in in middle school is a large part of one's day). I think I may share this article with him, as well as the comments here. It would be interesting to see what he thinks about it.
Posted by Siliconmom . on 04/27/2009 @ 10:27AM PT
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Any person can be successful if they are encouraged and supported. Without labels (limitations) a person can become who they are meant to be.
I was watching a true story, "The Soloist". Jaime Fox played a gifted musician and a homeless person. Robert Downey Jr. saw the gifted person not the homelessness. Both lives were changed.
Posted by L I on 04/27/2009 @ 01:34PM PT
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Ms Chew
It is good to see you openly acknowledge the benefits your son has received from ABA intervention over a ten year period.
The straw man attacks against ABA are made on the basis that ABA is simply about conforming to societal norms.
ABA helps autistic children with deficits, including my son with Autistic Disorder, acquire specific skills in communication, math, reading etc. It also assists in managing, and yes modifying, self injurious behavior so as to prevent harm to the child.
The success of ABA as a means of helping autistic children in this manner is not the domain of anecdote alone. It is well documented and reviewed by a number of credible agencies over the past dozen years from the US Surgeon General to the American Academy of Pediatrics.
Posted by Harold L Doherty on 04/27/2009 @ 02:35PM PT
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Thank you---I have been writing online about ABA and my son since 2005, and even earlier.
http://autism.wordpress.com/2005/11/10/aba-and-not-vs-vb-135/
Posted by Kristina Chew on 04/27/2009 @ 04:47PM PT
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As a BCBA, I hear the ABA debate often... I think you wrote about it fairly and accurately. And I totally agree with your final statement... a good teacher can work miracles, often regardless of the specific methods/details.
Posted by Laura Peroutka on 04/30/2009 @ 05:31AM PT
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