About ABA

In The Politics of Autism, I write:

As long as government funds so much research, politics will shape the questions that scientists ask and determine the kinds of research that receive funding.  Politics will even influence which scientists the policymakers will believe and which findings will guide public policy. In the end, science cannot tell us what kinds of outcomes we should want.  ABA “works” in the sense that it helps some autistic people become more like their typically developing peers.  Most parents regard such an outcome as desirable, but not all people on the spectrum agree.  

Elizabeth Devita-Raeburn writes at The Atlantic:

Whether ABA is helpful or harmful has become a highly contentious topic—such a flashpoint that few people who aren't already advocates are willing to speak about it publicly. Many who were asked to be interviewed for this article declined, saying they anticipate negative feedback no matter which side they are on. One woman who blogs with her daughter who has autism says she had to shut down comments on a post that was critical of their experience with an intensive ABA program because the volume of comments—many from ABA therapists defending the therapy—was so high. Shannon Des Roches Rosa, co-founder of the influential advocacy group Thinking Person’s Guide to Autism, says that when she posts about ABA on the group’s Facebook page, she must set aside days to moderate comments.

...
Given the diversity of treatments, it’s hard to get a handle on the evidence base of ABA. There is no one study that proves it works. It’s difficult to enroll children with autism in a study to test a new therapy, and especially to enroll them in control groups. Most parents are eager to begin treating their children with the therapy that is the standard of care.
There is a large body of research on ABA, but few studies meet the gold standard of the randomized trial. In fact, the first randomized trial of any version of ABA after Lovaas’ 1987 paper wasn’t published until 2010. It found that toddlers who received ESDM therapy for 20 hours a week over a two-year period made significant gains over those who got the usual care available in the community.

That year, a report from the U.S. Department of Education’s What Works Clearinghouse, a source of scientific evidence for education practices, found that of 58 studies on Lovaas’ ABA model, only one met its standards, and another met them only with reservations.

Research on Optimal Outcomes

Ruth Padawer writes at The New York Times Magazine:

While subsequent studies did not reproduce Lovaas’s findings, researchers did find that early, intensive behavioral therapy could improve language, cognition and social functioning at least somewhat in most autistic children, and a lot in some. A few studies claimed that occasionally children actually stopped being autistic, but these were waved off: Surely, either the child received a misdiagnosis to begin with or the recovery wasn’t as complete as claimed.

In the last 18 months, however, two research groups have released rigorous, systematic studies, providing the best evidence yet that in fact a small but reliable subset of children really do overcome autism. The first, led by Deborah Fein, a clinical neuropsychologist who teaches at the University of Connecticut, looked at 34 young people, including B. She confirmed that all had early medical records solidly documenting autism and that they now no longer met autism’s criteria, a trajectory she called “optimal outcome.” She compared them with 44 young people who still had autism and were evaluated as “high functioning,” as well as 34 typically developing peers.

In May, another set of researchers published a study that tracked 85 children from their autism diagnosis (at age 2) for nearly two decades and found that about 9 percent of them no longer met the criteria for the disorder. The research, led by Catherine Lord, a renowned leader in the diagnosis and evaluation of autism who directs a large autism center and teaches at Weill Cornell Medical College, referred to those who were no longer autistic as “very positive outcome.”

Followup Story to "Optimal Outcomes" Study

The San Jose Mercury News writes of the "optimal outcomes" study that this blog has described:

There are no solid numbers showing what percentage of children diagnosed with autism eventually lose that diagnosis. But the idea that autistic children could recover began to gain traction in 1987 when UCLA psychology professor Ivar Lovaas said he saw a 47 percent recovery rate using intensive behavioral therapy. Many researchers, however, questioned whether some of the children in that and other studies truly had autism in the first place.

The new study, published in the Journal of Child Psychology and Psychiatry, has put these questions to rest, autism experts say.

For the study, a team of psychiatrists led by Deborah Fein of the University of Connecticut recruited 34 people who had been diagnosed before age 5 and had since lost their diagnosis according to the team's extensive interviews and behavioral observations. The team also solicited independent verification of the children's initial diagnoses.

Fein is quick to caution that the overwhelming majority of children with autism will not recover. "I've seen hundreds and hundreds of kids who got great therapy and excellent parenting," she said. "They all made progress, but very few of them reached that stage."

In general, she added, "it's very hard to predict who is going to respond rapidly to intervention."
Another unknown is how recovery comes about. Most families try several therapies, often several at once, making it difficult to tease out which are most important for producing optimal outcomes.

This report is more accurate than most.  But some psychologists would dispute the suggestion that the new study has ended all questions about Lovaas's findings:  some argue that the 47% figure was too high.

Autism As Rhetoric

In Disability Studies Quarterly, Alicia Broderick has an article, "Autism As Rhetoric: Exploring Watershed Rhetorical Moments In Applied Behavior Analysis Discourse."  The abstract:

This manuscript offers an analysis of what I argue are three watershed moments in contemporary autism and applied behavior analysis (ABA) rhetoric (1987-2010). The first of these moments is the 1987 publication of O. I. Lovaas's treatment effect study, which introduced the rhetoric of recovery from autism and linked this rhetorical construct with a particular intervention methodology—ABA. The second moment consists in the 1993 publication of Catherine Maurice's autobiographical account of employing Lovaas-style ABA intervention programs with her two young children—an account that both popularizes Lovaas's rhetorical construct of recovery and reiterates its linking with ABA, but more significantly, that also introduces to popular autism discourse the rhetoric of science as a means of constituting the legitimacy of ABA. The third watershed moment in contemporary autism rhetoric is the 2005 establishment of the organization Autism Speaks, which has effectively changed the face of autism rhetoric through its com prehensive deployment of corporate-style rhetorical and political strategy.

Ne'eman on Lovaas

Ari Ne'eman of the Autistic Self-Advocacy Network recently spoke at Bloomfield High School in South Orange, New Jersey. Marcia Worth writes at The South Orange Patch:

Citing one renowned researcher, Dr. Ivar Lovaas, Ne’eman noted that rendering autistic patients “indistinguishable from their peers” – in other words, able to mimic ‘normalcy’-- was widely seen as "success” in the field of autism treatment.
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“I don’t know many people whose goal, when they wake up in the morning, is to be indistinguishable from their peers,” noted Ne’eman wryly in his speech. “Lovaas’ studies weren’t measuring independent living skills or academic skills like science or math, they were measuringindistinguishability from peers. Is that meaningful?”

Designing treatment methods based on conformity to an opposing ideal automatically defines the starting point, "acting autistic," as "wrong," Ne’eman said.

Exploring the notion of different = wrong in a separate context, Lovaas conducted other studies, notably the “Feminine Boy Project” conducted at UCLA medical center in the 1970s, which ran concurrently with the UCLA “Young Autism Project.”

“The purpose of the Feminine Boy Project was “to rescue children from homosexuality. Now, we understand this to be an astonishingly disreputable undertaking,” said Ne’eman, noting that Lovaas’ treatment methods for the Young Autism Project have not been challenged in the same way in the intervening years.

“The medical model of disability was viewed from a perspective of charity but not from a perspective of civil rights,” he said. “Horrible things happen in our society to people who are not ‘normal’.”

...

“Acquiring social norms like hygiene are valuable because there’s a reason for it. It’s not like eye contact,” he said, referring to the difficulty many autistic people have with meeting other people’s gaze. “You have to ask, is this something that is a problem for the child or the people around the child? It’s perfectly legitimate to encourage skill-learning that will help children survive and get a job, etc. But hand-flapping doesn’t hurt anyone. It can be very important to us and very comforting to us.”

Studies to Know for an IEP

Dr. Jonathan Tarbox of CARD talks to Shannon Penrod about ABA literature that parents might want to consult before their next IEP meeting.  Here are the studies that he mentions:

• Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.
• Sallows, G., Graupner, T. (2005). Intensive behavioral treatment for autism: Four-year outcome and predictors. American Journal on Mental Retardation, 110, 417-436.
• Cohen, H., Amerine-Dickens, M., Smith, T. (2006). Early intensive behavioral treatment: Replication of the UCLA Model in a community setting. Journal of Developmental and Behavioral Pediatrics, 27, S145-S155.
• Eikeseth, S., Smith, T., Jahr, E., Eldevik, S. (2007) Outcome for Children with Autism who Began Intensive Behavioral Treatment Between Ages 4 and 7. Behavior Modification, 31, 264-278.
• Eldevik, S., Eikeseth, S., Jahr, E., Smith, T. (2006). Effects of low-intensity behavioral treatment for children with autism and mental retardation. Journal of Autism and Developmental Disorders, 36, 211–224.
• Howard, J. S., Sparkman, C. R., Cohen, H. G., Green, G., Stanislaw, H. A. (2005). Comparison of intensive behavior analytic and eclectic treatments for young children with autism. Research in Developmental Disabilities, 26, 359–383.
• Eikeseth, S., Smith, T., Jahr, E., Eldevik, S. (2002). Intensive behavioral treatment at school for 4- to 7-year-old children with autism: A 1-year comparison controlled study. Behavior Modification, 26, 49-68.
• Eldevik S, Hastings RP, Hughes JC, Jahr E, Eikeseth S, Cross S. (2009)  Meta-analysis of Early Intensive Behavioral Intervention for children with autism. Journal of Clinical Child and Adolescent Psychology, 38, 439-50.
• Eikeseth, S., (2009). Outcome of comprehensive psycho-educational interventions for young children with autism. Research in Developmental Disabilities 30. 158–178
• Reichow, B., & Wolery, M. (2009). Comprehensive synthesis of early intensive behavioral interventions for young children with autism based on the UCLA Young Autism Project model. Journal of Autism and Developmental Disorders, 39, 23-41.

Also see:

• Reichow, B. (2012) Overview of Meta-Analyses on Early Intensive Behavioral Intervention for Young Children with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders, 42, 512-20.

Dr. Doreen Granpeesheh

Fox News presents a profile of Dr. Doreen Granpeesheh as a way of introducing ABA to a broad audience.

Ole Ivar Lovaas, RIP

The Los Angeles Times reports:

Ole Ivar Lovaas, a University of California-Los Angeles psychology professor who pioneered one of the standard treatments for autism, has died. He was 83.

He had been recovering from surgery for a broken hip and developed an infection, according to a family member. Lovaas died Monday at a hospital in Lancaster, north of Los Angeles. He had been diagnosed with Alzheimer's disease a few years ago.

Lovaas' 1987 paper, "Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children," showed for the first time that intensive one-to-one therapy early in life could eliminate symptoms of the disorder in some cases.

He described some of his research subjects as having "recovered," a concept that remains controversial but appealed to parents and helped launch an industry that provides the treatment to the growing numbers of children being diagnosed.

"Before that (paper), people still felt that there was no hope once your child was diagnosed with autism," said Doreen Granpesheeh, one of his former graduate students who went on to open the Center for Autism Research and Treatment, a large therapy company.

An early interview with Lovaas: