Autism In The Media

Leesburg Today

Monday, August 11, 2008

ASAT provided the following letter to the Special Advisory Committee of the Virginia Insurance Commission following testimony advocating for passage of Virginia HB 83. This house bill would mandate insurance companies to cover treatment for those diagnosed with ASD.

August 8, 2008

Special Advisory Committee –HB83
c/o Ms. Florence Morris
Sr. Insurance Analyst
Bureau of Insurance
1300 East Main Street
Richmond, VA 23219

Dear Special Advisory Committee,

I am a licensed clinical psychologist in the state of Virginia and a board member for the Association for Science in Autism Treatment (ASAT). ASAT is a nonprofit organization with the mission to inform the public about science-based autism treatments and to increase access to effective intervention for those affected by autism spectrum disorders (ASD). As such we are interested House Bill 83 as it relates to improved access to empirically-supported intervention procedures for individuals with ASD. Thus, we encourage the Special Advisory Committee to issue a strong position of support for requiring insurance companies to provide coverage for effective autism treatments. We commend you for taking on this noteworthy task of providing guidance on this bill.

The interests of HB 83 are directly in line with ASAT’s mission, and thus we offer our support and guidance in providing the most up to date information, inclusive of peer-reviewed journals and findings of multidisciplinary task forces with this same mission. We direct the committee to the numerous state task forces (e.g., New York State Department of Health, Maine Administrators of Services for Children with Disabilities) which have comprehensively reviewed the autism treatment literature and the U.S. Surgeon General’s report on autism which unanimously found overwhelming and clear evidence that Applied Behavior Analysis (ABA) is the most effective autism intervention, and went so far as to recommend it as a primary treatment modality. Hundreds of research articles in peer-reviewed journals also substantiate the effectiveness of ABA as a treatment for this population. It is very important that these sources and their findings be included in your review of the literature, as they relate to significant improvements in behaviors associated with autism. Without increased insurance coverage, individuals with this disorder are less likely to achieve independence, communicate appropriately and make contributions to society. We hope you will also utilize our treatment summary review of existing research which can be found on our website at www.asatonline.org.

Though not an easy or inexpensive approach, and certainly not a cure for autism, ABA has been shown to offer a cost savings over a lifetime of care. I urge you to engage your committee in in-depth, current study of the autism treatment field so that you can provide a position that there are effective interventions for this population and that individuals with ASD should not be excluded from coverage by insurance companies because of their diagnosis. Know that your efforts can alleviate the suffering and outcome of those affected by this growing disorder. The first step is to provide accurate information and require insurance coverage that leads to real hope. If I can be a further reference for your committee, please contact me at (703) 855-4032.
Regards,

Jane M. Barbin, PhD, BCBA
Public Relations Committee

Oregon Health Commission

Wednesday, August 06, 2008

July 17, 2008

David Pass, M.D.
Director, Health Resources Commission
Office for Oregon Health Policy & Research
1225 Ferry Street, SE
Salem, Oregon 97301

Dear Dr. Pass,

The Association for Science in Autism Treatment (ASAT) is a nonprofit organization with the mission to inform the public about science-based autism treatments and to increase access to effective intervention for those affected by ASD. As such we are interested in the Health Resources Commission’s efforts in your state to provide a position on effective autism treatments and commend your commission and the Mental Health/ASD subcommittee for taking on this noteworthy task. This is directly in line with our mission, and thus we offer our support and guidance in providing the most up to date information, inclusive of peer-reviewed journals and findings of multidisciplinary task forces with this same mission.

In reviewing the Commission’s draft report on “Effective Autism Treatments for ASD”, we find incomplete and inaccurate information on the current state of our field. State task forces (e.g., New York State Department of Health, Maine Administrators of Services for Children with Disabilities) who have comprehensively reviewed the autism treatment literature and the U.S. Surgeon General’s report on autism unanimously found overwhelming and clear evidence that Applied Behavior Analysis (ABA) is the most effective autism intervention, and went so far as to recommend it as a primary treatment modality. Hundreds of research articles in peer-reviewed journals also substantiate the effectiveness of ABA as a treatment for this population. Mention of these sources and their findings is omitted from your review of the literature. While we agree that there is insufficient or no empirical evidence to support the majority of the treatments you reviewed, we also find your assertion that ABA/EIBI has limited support to be clearly inaccurate.

Though not an easy or inexpensive approach, and certainly not a cure for autism, ABA deserves better review and accurate representation in a document of this scope and significance. Also noteworthy is that ABA has been shown to increase independence, offering a cost savings over a lifetime of care. I urge you to engage your subcommittee, committee and independent

review agency in more in-depth, current study of the autism treatment field so that your document can guide Oregon residents more effectively, with real effort to alleviate the suffering and outcome of those affected by this growing disorder. The first step is to provide accurate information that leads to real hope.
Regards,

Jane M. Barbin, PhD, BCBA
Public Relations Committee

NEW AAP REPORTS HELP PEDIATRICIANS IDENTIFY AND MANAGE AUTISM EARLIER

Sunday, March 30, 2008

It is encouraging to see the American Academy of Pediatrics (AAP) recommend early screening for autism in all children, given some may be later diagnosed with the disorder. The science is clear that access to early, intensive, behavioral intervention can lead to improved outcome. We share the AAP's endorsement of screening evaluations prior to age 2 so that effective treatment can begin immediately. This will lead to greater utilization of science-based treatment, namely Applied Behavior Analysis (ABA) which has received strong empirical support. The warning in regards to special diets and alternative treatments described in the article is critical. It is essential for parents of children newly diagnosed with an autism spectrum disorder to be equipped with necessary treatment information. In our opinion, the sooner this can occur, the better.

The Association for Science in Autism Treatment
(www.asatonline.org )

Jane M Barbin, PhD, BCBA
Chair, Public Relations Committee

ABC Drama Takes on Science and Parents

Sunday, March 30, 2008

I am writing to express my grave concern about the upcoming "Eli Stone" drama. You may be unaware that a large majority of medical health professionals, including organizations such as the Centers for Disease Control, American Academy of Pediatrics and NIH concur that vaccines do not cause autism. Airing this type of misinformation is irresponsible and is sure to confuse those seeking accurate, science-based information on autism. We hope you will give proper attention to the impact this show will have and promptly remove it from your schedule.

Jane Barbin, PhD, BCBA
Association for Science in Autism Treatment
www.asatonline.org

Please use the information below to reply to this article.
ABC Medical Unit:
Email: abcmedunit@abc.com
ABC Entertainment:
Phone: 818.460.7477
ABC Vice President, Media Relations for "Eli Stone":
Carissa Gilmore
Phone: 818.560.7472
ABC Media Relations for "Eli Stone":
Aime Wolfe
Email: Aime.Wolfe@abc.com
Phone: 818.460.7421
ABC Studios Relations for "Eli Stone":
Nicole Marostica
Email: Nicole.Y.Marostica@abc.com
Phone: 818.460.6783
Fax: 818.460.5636
Photo Hotline:
( 818) 460-6611
(212) 456-6710

Letter from Sharon A. Reeve, Ph.D., BCBA, Vice President of the Association

Thursday, May 18, 2006

Dear Editor,

Time magazine has a long-standing track record of publishing stories that promote awareness about autism. For this, the magazine should be applauded. However, in your May 15, 2006 issue, the article “A Tale of Two Schools” by Claudia Wallis perpetuated a number of myths, biases, and misrepresentations about certain autism treatment approaches.

The article begins by saying that parents of children with autism “enter a dizzying world of specialists, therapists and, alas, purveyors of snake oil. Getting the right help quickly is paramount, but it is hard to make good decisions when you are in a panic or fighting despair.” These statements seemed to suggest that the article was going to help parents sort out the “wheat from the chaff” in autism treatment. Instead, the article wasted an opportunity to publicize an evidence-based approach to autism treatment, applied behavior analysis ( ABA), by putting it on level footing (but sometimes beneath) with another approach, Floortime, which lacks empirical peer-reviewed outcomes research supporting its use. The end result of this article is that it fails to clarify important concerns surrounding effective treatment for autism. For example, the description under the article’s title states that “Early intervention in a well-run program is the key to helping autistic children reach their potential. A close-up look at two approaches.” This statement implies that as long as the intervention is put in place early and is “well-run,” then it doesn’t matter which approach is used. Unfortunately, this assumption, albeit incorrect, is fairly common in discussions of autism treatment. Rather, the more important issue should be which “early intervention” has outcome data to support its use. A large and continually increasing number of published peer-reviewed studies have demonstrated that children who are part of an ABA program are able to make substantial gains across a wide range of skills and abilities.

Although the article does mention one of the landmark studies demonstrating the effectiveness of ABA for autism treatment, that by Lovaas in 1987, the article then asserts that questions have been raised about the ABA model in recent years, presumably as a result of Smith’s failure to fully replicate Lovaas’s findings. Not mentioned in the article, however, is that a recent 2005 study in the American Journal On Mental Retardation by Sallows and Graupner, who used the same methods as Lovaas did in his 1987 study, showed the same degree of gains in children’s IQ and skills as those observed by Lovaas. This repeatability of effects further strengthens the assertion that the research evidence for ABA’s use in programs for autism is sound. Perhaps Wallis’ article would have been more accurate if she asserted that “recent years have brought further evidence about ABA” rather than questions about its effectiveness. The article also states that the children in the Lovaas study in 1987 passed first grade, it failed to mention the follow-up study conducted by Tristram Smith and his colleagues in 1993 that demonstrated that out of the nine children who had the best-outcome, eight maintained their treatment gains. Treatment gains were also not merely described as passing first grade but by these children being “indistinguishable from their peers.”

The article further states that “ABA derives from the classic work of psychologist B.F. Skinner, who showed--mostly in animals--that behavior can be altered with carefully repeated drills and rewards.” There are two problems with this statement: one it perpetuates the myth that ABA is similar to animal training. Since the 1960s, thousands of studies in ABA have been conducted with people, both typical and developmentally delayed. The research findings in these studies form the core of ABA’s knowledge base as it pertains to explaining how we can best learn. Although it is true that Skinner and his colleagues did much of their early work with animals, such studies were conducted to identify the most simple and basic principles of learning, all of them unknown and uninvestigated at the time. Such a tactic is similar to how biologists who wish to understand the basic processes of life began by identifying the functioning of simple components, like cells, before moving on to investigating the workings of more complex systems. In fact, Skinner’s later work focused almost exclusively on research in the development of more effective teaching methods for our education systems.

The second problem with Wallis’s statement is that it simplifies the complex discipline of ABA by erroneously distilling it down to two parts: “drills” and rewards. Investigations in ABA as to how we learn have concerned questions such as: do peers make better teachers than adults? Is it better to teach expressive language before or after teaching receptive language? Do children learn better when they have more choices for rewards? Do video models work better to teach skills than live models? Can children learn to be more independent using activity schedules? What is the optimal number of steps to teach conversational skills? There are thousands of additional questions. The point is that ABA seeks to uncover principles about how we learn and to then apply those principles to socially significant skills and behaviors.

The article states that “robotic behavior” is one shortcoming critics attribute to ABA.” Yes, this “shortcoming” is frequently expressed by “critics” of ABA programs. However, there are no peer-reviewed studies that have ever lent any support to this characterization of ABA. One of the hallmarks of any quality ABA program is to ensure that teaching involves learning how to engage in activities that should ultimately be fluid and natural. It is true that certain skills may be somewhat less fluid early in the learning process, just as they would be for any person. Do you readers remember the early stages of their learning a new language or learning to play an instrument? Do they remember how “robotic” their behavior appeared at first? Such “robotic” behavior, when observed, seems to be more a function of an early level of skill learning than it does an outcome of an ABA program.

The article states that an “inability to use trained skills outside school” is one shortcoming critics attribute to ABA.” This is the old “failure to generalize” myth about ABA. No empirical study has ever shown that ABA somehow decreases the likelihood of skill generalization. In fact, one of the hallmarks of any quality ABA program is to ensure that skills to be learned are always taught so as to maximize their use under new situations outside of the school. Skills are taught with varying materials, in varying settings, and with multiple teachers so as to promote generalization of skills. ABA recognizes that the usefulness of any skill would be severely limited if it did not generalize to new situations, persons, etc.

The article states that “ ABA was once famous for its M&M rewards, but better programs now tailor positive reinforcement to the child's preferences.” Why did the author not simply assert that “ ABA programs tailor positive reinforcement to the child's preferences.” This would make note of the individualized approach and opportunities for choices inherent in an ABA program. Why did the author feel there was a need to present the common derogatory misrepresentation of ABA therapists as “M&Ms pushers”? It is also puzzling as to why the author would include a comment about a child working for a packet of ketchup. Although the author might have felt that this was humorous, it seems to promote the idea that “unnatural” rewards are used in the ABA program depicted in the article. Any parent of a child, typical or otherwise, however, would be quick to point out that many children have some “odd” preferences for foods and activities. ABA programs initially use whatever reinforcers the child prefers early on when a child has few skills and preferences. Over time, however, a wide variety of less contrived rewards come to be preferred by the child as they are introduced into the child’s education.

The article states that proponents of ABA “concede certain weak points” about the effectiveness of ABA. Although this is a true statement, its inclusion in the article under the section describing ABA and its absence under the section describing the Floortime model seems to suggest that “weak points” are to only be found in the ABA model of treatment. Given the reliance on scientific analysis of learning outcomes in ABA, it is not surprising to find that ABA practitioners have identified techniques and outcomes that need improvement. The discipline of ABA is a dynamic one, as is any active science. The techniques used and learning principles discovered are constantly under scrutiny and are tested for effectiveness. When viewed this way, isn’t it more of a “weak point” of the Floortime approach since such a scientific analysis is not undertaken in that treatment model?

The article states that “While Greenspan has published impressive long-term results, his critics say there's an absence of controlled, randomized studies.” The absence of peer-reviewed controlled research studies that indicate the effectiveness of the Floortime approach has nothing to do with “critics.” The fact is that there aren’t any. In fact, it would be particular difficult if not impossible to conduct such studies given that Greenspan himself has often said that ABA may be combined with Floortime. If this is a common practice in Floortime programs, then isn’t it possible that whatever “impressive long-term results” Greenspan has reported are due to the ABA component?

A staff member from the Celebrate the Child School, who was described as having previously worked in an ABA program for six years, was quoted as saying that "It [ABA] does a great job with skills, but the kids lacked the ability to think on their feet, to problem solve and to engage socially." This misrepresentation suggests that children who have gone through ABA programs are somehow rigid and distant from others. Nothing could be further from the truth. Children in ABA programs actively learn to interact with a variety of situations and people. They are frequently presented with opportunities to “solve problems” and to “engage socially.” Whenever it is observed that a specific child has not yet learned the skills to fully participate in such activities, then the child and his or her teacher will work on these skills until the child is able to learn them.

A staff member from the Celebrate the Child School is also quoted as saying that “the ABA emphasis on ‘looking normal’ doesn't address the reasons for behaviors like flapping and rocking: Those are organizing strategies to cope with anxiety.” In fact, ABA’s emphasis is certainly not on “looking normal.” Rather, it emphasizes that children have the right to learn how to do the activities that typical children engage in and enjoy. ABA emphasizes the learning of skills that provide for opportunities and choices in the child’s current and future life. If a child engages in “flapping” or “rocking” for large portions of time, then it is very difficult for other skills to be learned. In addition, it is irresponsible to print the blanket generalization that such types of behavior (“flapping” or “rocking”) are “organizing strategies to cope with anxiety.” Behavior analysts do not assume what the function of a behavior such as rocking is without first conducting a functional analysis. This allows the ABA therapist to understand why a certain child might be engaging in such behavior. This individualized approach for each child is another characteristic of ABA that was lacking from the article.

It seems that the author’s intention for writing an article of this type was to provide parents with options when it comes to selecting an autism intervention. When it comes to the well being of our children, there is no denying that options are important. If a child is diagnosed with a severe illness such as leukemia, for example, then it is the responsibility of the child’s medical doctor to inform the parents about their treatment options. The medical doctor would then indicate to the parents the level of effectiveness of each treatment as evidenced in the research literature and would most certainly recommend the treatment that had the best chance for success. This information would give the parents the ability to make an INFORMED decision based on objective, accurate information. In the case of Wallis’s article, however, rather than providing parents with an opportunity to make an informed decision and to positively affect the lives of thousands of children with autism, her misrepresentation of the two autism treatment options only serve to perpetuate the “dizzying world” of autism treatment that she has initially acknowledged was problematic.

Who will be there to console these parents when years later they may realize they made an ill-informed decision regarding their child’s intervention based on inaccurate information from Time magazine?

Sincerely,

Sharon A. Reeve, Ph.D., BCBA
Coordinator of Graduate Programs in ABA
Caldwell College

Letter from Catherine Maurice, PhD. Author

Thursday, May 18, 2006

What a disservice to children and families. One method, which has been shown through controlled research to consistently improve the outcomes for children with autism, is painted with the standard clichés of cold, manipulative, robot training; the other, which has been hugely marketed and promoted, is depicted in glowing terms as caring, compassionate, addressing the whole child instead of the symptoms, etc. Who wouldn’t want to place their child in the loving embrace of Floor Time, as opposed to the ABA program, which is depicted as something close to dog training obedience school?

These biased distortions about ABA have been around ever since two of my three children were diagnosed with autism. Fortunately, we were able to figure out the truth for ourselves, through trial and error, about which approach has a track record and which have none to speak of. Today, both children are fully mainstreamed, one a sophomore in college, the other accepted to begin his studies at a major university. That outcome is one of several possibilities. Other children, even those who receive high quality intervention, will make more modest gains; the field of ABA has never claimed that it will rescue all children from autism. It does however, have the evidence to show that if it is administered well, by competent, highly trained people, it has the capacity to bring about improved functioning, greater communication, enriched social interactions, and a more independent life for the majority of children diagnosed with autism.

What is the track record behind Floor Time? Where is the published and peer reviewed research showing the success, or even effectiveness, of this approach, in alleviating any of the severe and debilitating symptoms of autism? How many years has it been around, and how long must the public wait for that corroborating evidence - always promised, never delivered? Why is this approach being so aggressively promoted and marketed? Of course play and caring and fun and joy and compassion must be part of any approach to autism. But if playful nurturing and caring could rescue children from autism and teach them language, we wouldn’t really need either Floor Time or ABA, would we? Any loving Kindergarten teacher who knew how to structure a nice stimulating, enriching classroom with lots of play and attempts at “relating” could do the trick. Unfortunately, autism demands a much more focused, empirically-validated approach.

The almost total disregard in this article of small matters like outcome, data and evidence is bad enough. More troubling, however is the implicit accusation that by placing their children in an ABA program parents and therapists are somehow ignoring a child’s emotional life. How offensive, both to parents who have chosen ABA and to the therapists who work so hard with their children. The behavioral therapists that I have known, including Bridget Taylor, featured in your article, are filled with loving enthusiasm and a keen respect for every aspect of our children’s development, from language, to play, to social interaction, to academics. The families I have known over the years who have chosen an ABA approach are every bit as concerned with their children’s hearts and souls as with their behaviors or their academics. Only marketing hype for fad treatments, supported by media sensationalism, would insist otherwise.

Bettelheim was the first to accuse parents of emotional distance and to excoriate behavioral treatment as “treating the symptoms” and not the “root cause.” How many times since that era of “refrigerator mothers” have we heard this tired old mantra? So many people claim to have found the “root cause” of autism, and so many fads and marvelous, warm, caring, humane treatments abound, supposedly to “fix” that root cause, it’s a wonder there is any autism left on the planet. It’s difficult to understand why the editors of Time seems so unaware of this historical context, this language of false promises, over-marketed treatments for autism, and pontifications about root causes. But unaware you are. Worse, you have chosen to propagate one of Bettelheim’s favorite themes: That parents who have chosen applied behavior analysis just want “obedient” children who “look normal.” Perhaps Time should interview a host of parents who did choose behavioral therapy to find out the truth of their hopes and dreams for their children. Those hopes and dreams tend to revolve around the happiness of their child, not his “perfection.” No parent that I have known, in my twenty years of autism advocacy, simply ignores their child’s emotional life in pursuit of conditioned behaviors. That cruel caricature is just a reprieve of clichés that have been around for decades, clichés that we have been struggling to overcome, in order to assure effective treatment for all children diagnosed with autism. The way toward empirically validated treatments, backed by research and proved effective over multiple trials and in multiple studies, has been long, and hard, and the battle is by no means won. Today, parents who choose ABA are excoriated right and left, from those who paint them as ignoring their child’s emotional life to those extremists who deride and harass them for “rejecting” their child because he is not “normal.” In reviving all the tired stereotypes about ABA, you have done such a disservice to children, you have prolonged the endless struggle to access effective treatment, and you have levied yet more insult on parents who struggle everyday to help their children reach their fullest potential.

Catherine Maurice, PhD

Letter from Bridget Taylor, Psy.D, BCBA

Thursday, May 18, 2006

Dear Editor:
Re: A Tale of Two Schools

I was astonished by Claudia Wallis’ inaccurate portrayal of Applied Behavior Analysis (ABA) and the work of teachers and students at Alpine Learning Group (“A Tale of Two Schools,” TIME, May 15, 2006). Wallis spent hours at Alpine, reviewing the scientific research supporting ABA and observing our happy, related students engaged in learning activities guided by our dedicated and enthusiastic staff.

Errors of detail aside, Wallis missed the most salient facts for parents facing the momentous choices regarding their child’s treatment. ABA is the only intervention for autism supported by peer-reviewed scientific studies. Properly implemented by well-trained therapists, ABA can help children with autism learn to talk, to read, to write, to relate to their peers, and to participate fully and productively in their families and communities. ABA is a science, and as behavior analysts we are accountable for every moment we spend with our students. At Alpine, students’ days are filled not only with laughter and fun, but with meaningful learning opportunities aimed at reaching each student’s full potential.

While it is disappointing that Wallis misapprehended the science of ABA, it is truly distressing that she misrepresented and undersold the accomplishments of Alpine’s phenomenal students, families, and teachers. Reducing science to a sound bite is unprofessional, but reducing our students’ courageous work to an inapt cliché is unforgivable.

Bridget A. Taylor, Psy.D., BCBA
Executive Director
Alpine Learning Group

Letter from David Celiberti, Ph.D., BCBA, President of the Association for Science in Autism Treatment

Thursday, May 18, 2006

Dear Editor,

In the May 15, 2006 issue, the article “A Tale of Two Schools” by Claudia Wallis perpetuated a number of myths, biases, and misrepresentations about the two autism treatment approaches depicted. Critical information regarding the effectiveness of applied behavior analysis ( ABA) was unfortunately left out and led readers to view ABA as somewhat questionable in effectiveness. In fact, ABA has an over 40-year track record of peer-reviewed research studies demonstrating its effectiveness across a diverse range of skills and techniques, including genuine social interactions. Furthermore, there are hundreds of researchers worldwide publishing research on the treatment of autism using ABA. Although Floortime has been highly visible in the media for many years there are STILL no peer-reviewed empirical studies supporting the claim of “impressive results.” Sadly, your readers likely remain unaware of that fact. Rather than providing parents with an opportunity to make an informed decision and to positively affect the lives of thousands of children with autism, Wallis’s misrepresentation of the two autism treatment options actually serves to perpetuate the “dizzying world” of autism treatment that you acknowledged in your article. Moving forward, when developing articles about topics as important as the treatment of autism, I encourage your writers to conduct a more careful review of the existing scientific research prior to publication. Perhaps then you would not need to reference a work of fiction in titling your articles.

David Celiberti, Ph.D., BCBA
President of the Association for Science in Autism Treatment