Dear Mr. Robb,
We read with great interest and concern your article, “The Autism Story from Another Point of View,” in which you discuss a recent book authored by Dr. June Pimm. Current estimates from the Centers for Disease Control and Prevention (CDC) here in the United States put the ratio of children with autism at 1 in 68 (http://www.cdc.gov/ncbddd/autism/facts.html). Time will tell as to whether these estimates will shift as a function of the change in diagnostic criteria, but the numbers are indeed staggering and their implications for autism treatment is a most pressing topic.
In light of these statistics, you state that Dr. Pimm authored “The Autism Story” because she believed people needed information to help them make good decisions about how to raise their children; however, her book and its bold assertions may be more harmful than cautionary. With all due respect, parents of children diagnosed with autism, and the providers who are attempting to best address their needs, do not need another “story.” What they need is accurate and accessible information guided and informed by the best available, scientific evidence. We hope to take a closer look at Dr. Pimm’s book, but in the meantime we are compelled to respond to some of your statements, as well as quotes from the author, which are included in your article. Although brief, your review promulgated many misconceptions which present a tremendous disservice to parents who have chosen to rely on evidence-based treatment to help their children.
First, autism is diagnosed based on behavioral indicators. If a child who had been diagnosed with autism no longer demonstrates these indicators as a function of treatment (and, for the sake of argument, even maturation in the case of a misdiagnosis), it is anticipated that he or she would lose that diagnosis. A diagnosis is not like a tattoo, and need not be a “diagnosis for life” as Dr. Pimm is quoted as saying. On the other hand, if a child with autism fails to be appropriately diagnosed at an early age, as the author categorically warned against (“…There is no psychiatric diagnosis that should ever be given to children at 18 months of age, two years of age.”), he or she will suffer a truncated prognosis and may not realize his or her fullest potential. This would include, but not be limited to, behavior problems such as self-injury becoming entrenched; the skill gap between the child and his or her typically-developing peers widening during the most critically important developmental period; and/or diminished access to inclusive education with meaningful exposure to typically-developing peers. Access to treatment is predicated on accurate diagnosis, and to withhold a needed and appropriate diagnosis is irresponsible and immoral. Let us be clear, “diagnostic false alarms” present many concerns and challenges (e.g., a drain on limited resources); however, a “diagnostic miss” is heartbreaking, as we are talking about the precious futures of young children. I invite your readers to think about a diagnosis such as cancer being withheld or missed altogether. Is there a potential for your children to be misdiagnosed? Yes. Should that be the basis upon which no child is diagnosed? Absolutely not!
Second, it is important to characterize applied behavior analysis accurately. When referring to applied behavior analysis (ABA), you wrote, “It is a treatment that flows from the American B.F. Skinner who used to train rats to navigate a maze with cheese.” Maze learning with rats represents only a tiny slice of Skinner’s multi-decade career. At a time when there are 400+ purported treatments for autism, many of which may deplete parents’ financial resources, waste precious time, present false hope and sometimes even be harmful to the child; your statement belittles an important body of work which is supported by copious amounts of scientifically-validated data. If you take the time to look further into ABA, you will find that Skinner’s important work laid a foundation upon which thousands of researchers worldwide have published thousands of articles in peer reviewed journals detailing how ABA has been applied to address the full array of challenges associated with autism. You will find that no other treatment enjoys this tremendous body of scientific support. You will also find that most treatments lack any research published in peer-reviewed journals to support their use.
Clinically, behavior analysts directly address concerns that keep parents awake at night (e.g., wandering from home, eating only a few foods, not speaking). This important clinical work stands on the shoulders of early researchers, such as B. F. Skinner, who laid such an important foundation. A more accurate and complete description of the research basis underlying applied behavior analysis would have given your readers a more accurate perspective than your rather flattening statement referencing “rats and cheese.”
Third, scientific advances should be based on data, not opinion. You include Dr. Pimm’s statement that “You can’t teach children using the behavioral approach. Skinner was wrong.” Actually, Dr. Pimm is wrong; and here is why. Children with autism have been taught using a behavioral approach, as evidenced by scores of published research studies. A plethora of centers of excellence have achieved incredible outcomes using this methodology, and findings of several task forces have recognized the efficacy of applied behavior analysis. Perhaps one can make a statement that Treatment X is better than ABA; but with all due respect to Dr. Pimm, such a statement should be based on the presentation of objective data about Treatment X, not just an opinion. Here is an opinion: We think eating coffee ice cream is wrong. What do you do with that? How is that helpful? Is it based on bias or preference? Treatment selection should be guided by science, and opinions should be offered with great caution.
In closing, we encourage you and your readers to exercise caution when exposed to statements about autism treatment. We further suggest you visit the Association for Science in Autism Treatment at https://asatonline.org/ which provides a wide array of information on science-based treatments for autism, along with other resources which provide parents and providers a basis for making sound and well supported treatment decisions.
Although we disagree with many of the statements in your article, we welcome dialogue that provides opportunity for parents and providers within the autism community to understand the importance of accuracy and scientific support in any and all conversations about autism treatment. Anything less would be a disservice to the millions of people living with autism who deserve access to interventions which will not only open doors for them, but enable them to realize their fullest potential.
Sincerely,
David Celiberti, Ph.D., BCBA-D and Mark Sullivan, BA
Association for Science in Autism Treatment
