CARD Response to LA Times
Letter to the Editor, January , 2012
The online article published on December 15th, on applied behavior analysis (ABA) and autism should be praised for bringing much-needed attention to autism and scientifically-supported treatment. However, several issues which were raised in the article must be addressed. I must say that I am dismayed because we addressed most or all of these issues thoroughly throughout the time Alan Zarembo interviewed me for the story. In addition, I am aware that Mr. Zarembo interviewed many of my colleagues in ABA in preparation for the story, and they, too, are taken aback by the misrepresentations with which your article is replete.
Leading the Story with a Discussion of Aversives
It is true that decades ago, ABA practitioners used strong punishment procedures, but this has not been done for a very long time and is so out of date at this point that it is bordering on irresponsible journalism to lead a story on ABA with a discussion of aversives. This is a ridiculous caricature. Mainstream American public education used to use corporal punishment, too, but it would be preposterous to lead a story on contemporary American education with a discussion of corporal punishment. It is difficult for me to discern whether this misrepresentation was done intentionally to create more controversy (and therefore attention for the story) or whether it was done out of a lack of proper research into the subject of the article. A single hour spent observing ABA at any ABA agency in the LA area would demonstrate unequivocally that aversives are not part of ABA treatment.
Evidence for ABA-Based Interventions
The article is correct that ABA has only one published randomized control trial (RCT). However, there is only one RCT of ABA for a number of reasons. First, ABA takes two or more years to produce the full effect. What family would volunteer to receive no treatment for two years? Second, and more important, since the evidence supporting ABA has been clear for more than a decade, it would be unethical to intentionally randomly assign a child with autism to a no-treatment control group. This is why most of the published outcome studies have compared outcomes for groups of children whose families have personally chosen ABA to outcomes for children whose families have personally chosen to receive other treatments. As your article points out, the one existing randomized trial of early intensive ABA, by Smith and colleagues in 2000, found substantially less robust results than the original Lovaas study. However, your article fails to mention that they did not implement anywhere near the recommended dose of treatment. They implemented only 25 hours per week, versus 40 hours per week in the Lovaas study. It seems reasonable to assume that most treatments are less effective if you only take 63% of the prescribed dose.
Every study ever published that has implemented ABA for at least 30 hours per week and for a year or more has demonstrated robust differences in outcomes between the treatment and control groups. The weight of the evidence supporting ABA has led a number of independent bodies to endorse the efficacy of ABA for the treatment of autism, including the U.S. Surgeon General, the New York State Department of Health, the National Academy of Sciences, and the American Academy of Pediatrics. It seems difficult to imagine that a thorough story, researched for months by LA Times journalists, could leave out this information. None of the bodies listed above are governed by ABA professionals, and none would benefit in any way from endorsing ABA. Here are some direct quotes which would have made the story more accurate:
U.S. Surgeon General: “Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior.”
NY State Department of Health: “Several studies done by independent groups of researchers have evaluated the use of intensive behavioral intervention programs for young children with autism. The four studies that met criteria for evidence about efficacy all compared groups of young children with autism who received either an intensive behavioral intervention, a comparison intervention, or no intervention. In all four of the studies reviewed, groups that received the intensive behavioral intervention showed significant functional improvements compared to the control groups. While none of the four studies used random assignment of subjects to groups, there did not appear to be any evidence of important bias in group assignment. Within each study, the groups receiving different interventions had equivalent subject characteristics. Furthermore, all studies showed similar and consistent results.”
American Academy of Pediatrics: “The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings. Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.”
Recovery as the Only Goal of Treatment
We have never implied that recovery is the only legitimate goal of ABA treatment, nor has a single ABA treatment provider with whom I have ever interacted. Our goal at CARD (and the goal of applied behavior analysts in general) is to maximize the learning and skill development of each individual child, so that each child can reach his or her maximum potential. This was made clear to Mr. Zarembo during the many interviews he did with me and many other behavior analysts while researching this article. We celebrate those children who make progress but do not recover as much as we celebrate those who do. The article completely ignores the meaningfulness and life-changing effects of even “small” gains, such as no longer having to wear diapers, being able to feed oneself or being able to communicate basic needs and desires. ABA practitioners value all changes that allow the people we serve to be more independent and have a higher quality of life. This perspective was not represented in the article.
Providing ABA Treatment Only to Those Who Will Benefit the Most
The article implies that only those who have the potential to recover should be offered access to what we know to be the most effective treatment available. Parents of those children who will not recover will clearly take from your article the idea that their children are not worth the effort. There is currently no way to predict which child is going to recover and which is not; thus, every child deserves the chance to reach for that goal. For many other illnesses and conditions, we do not know exactly who will benefit most from treatment, but it is inarguable that everyone has a right to effective treatment. Replace the word “autism” with “cancer,” “diabetes,” or “HIV,” and it becomes obvious that the idea that treatment should only be given to those children who will recover is, frankly, prejudiced.
Using Recovery as a Marketing Ploy
The implication that ABA practitioners promote recovery for the purposes of monetary gain is cynical and misguided. Every hospital promotes itself on the basis that it attempts to help patients recover from what ails them. We believe it would be unethical not to talk about the possibility of recovery. Imagine if you went to your oncologist and asked “What are my chances, doc?” and he would not tell you that somewhere around half or a third of patients will fully recover. It would be patently unethical. How is autism different? Parents want and deserve to know what is possible for their children, and they deserve to be informed about what is scientifically proven in order to offer their children the best chance at reaching their maximum potential. We encourage parents with Les Brown’s advice: “Shoot for the moon. Even if you miss it, you will land among the stars.”
“They never really had autism to begin with”
After accusing ABA providers of using the term, “recovery,” to prey on parents’ vulnerability in order to make a profit, the article goes on to imply that children who do recover never had autism in the first place. This suggestion is hugely offensive to the parents of these children who have gone to hell and back to do everything necessary to help their children progress as much as is humanly possible. Any of these parents could have told you that each step towards recovery was desperately fought for. What was your evidence for even mentioning this possibility? Why was Dr. Bennett Leventhal, who is clearly not an expert in autism treatment, quoted, despite a complete lack of evidence to suggest recovered children were wrongly diagnosed? Again, it seems clear that the intention here was to garner more attention via controversy, not to represent the truth as accurately as possible.
The Costs of ABA
The costs of ABA are high, but several cost/benefit analyses have been conducted and all have found that it is cheaper in the long run for society to implement ABA early, rather than incurring the costs associated with caring for individuals over their lifetimes. That is, the price of ABA is worth it. Indeed, costs of producing even “small gains,” such as toilet training, are negligible compared to the cost of providing diapers over the lifetime of an individual with no toilet training. And the cancer analogy is again appropriate. Millions of dollars are spent treating cancer patients, even when the result is only prolonging life for a few more years, and yet no one complains that it is expensive. It is a simple moral imperative that human suffering deserves treatment and in the most prosperous nation in the world, even if effective autism treatment were not cost effective, it is morally reprehensible to question whether children with autism have a right to effective treatment because it is expensive.
CARD as a For-Profit Organization
We are disappointed that the Los Angeles Times chose to use its considerable public forum to portray CARD employees in particular (not to mention ABA providers, in general) as professionals who make huge profits by falsely giving people hope for recovery. Yes, CARD is one of the largest ABA treatment providers, with $21 million in contracts. Is this a bad thing? Contracts are for treatment, so more contracts mean more children treated. Does anyone complain when a hospital is able to treat more patients? In addition, the vast majority of contract revenue goes directly into the wages of the people working with our children and families, so CARD and other ABA agencies are major creators of jobs for Californians. Finally, we reinvest nearly two million dollars per year in research and development to improve the quality of treatment and to make it more accessible to people around the world. In fact, CARD is the third largest non-governmental supporter of autism research in the U.S. Furthermore, the celebrity-studded events you referred to as sources of marketing are actually fundraisers for the nonprofit organization, ACT Today, that has already given close to a half-million dollars in grants to needy families to help pay for treatment – the vast majority of which is not even ABA treatment and not provided by CARD. Rather than fact-checking your story, I suppose it was easier (or more inflammatory) to misrepresent charitable events as marketing.
I hope that a news organization of your caliber would voluntarily choose to correct the grievous errors in this story to mitigate the damage that could be inflicted on families looking for real information about scientifically-supported treatment for autism. I would welcome the opportunity to enhance your understanding of these matters.
Sincerely,
Doreen Granpeesheh, PhD, BCBA-D
Founder and Executive Director
Center for Autism and Related Disorders