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Response to Schoneberger (2006): "EIBT Research After Lovaas (1987): A Tale of Two Studies".

As a parent of a child with autism and as an attorney who practices special education law, I was appalled to read the recent article in your journal written by Ted Schoneberger entitled "EIBT Research After Lovaas (1987): A Tale of Two Studies." It would take more time than either of us has for me to provide you with the complete history of services for children with autism in California. However, I would like to at least summarize some of the history so that you might have a glimmer of understanding of the potential negative affects such an article may have on severely disabled children throughout this state.

My son is now 19 years old. When he was initially diagnosed with autism at the age of four, there were no services or programs specifically designed to meet his unique individual needs in any public education forum. As a result, I formed a parent group known as Central Valley Families for Early Autism Treatment ("FEAT") which had its origins in Sacramento and now has similar groups nationally. The purpose of this parent group was to provide advocacy on behalf of all children diagnosed with an autism spectrum disorder. We met with staff from Valley Mountain Regional Center who convinced us to work collaboratively with our local school districts (as opposed to filing for litigation). As a result of 14 years of work by parents, regional center staff and school district personnel, Central Valley now has the most effective treatment programs for children with autism found anywhere in the state.

I do not make this comment lightly. I have represented over 1,000 children with autism from San Diego to Alturas, California and have seen dozens and dozens of treatment programs in public schools, homes, and non-public schools. Moreover, I have attended thousands of IEP meetings for these children during the last 14 years and have worked collaboratively with school districts and service providers throughout the state. At the same time, I have continued to represent parents of children with autism in litigation against school districts and regional centers when they fail to provide appropriate services for these children. As a result of my professional work in this area and what I have witnessed firsthand, I would like to respond to some of the assertions about the study by Howard, Sparkman, Cohen, Green, and Stanislaw (2005) that were made by Mr. Schoneberger.

With regard to the issue of randomization, one must logically take into consideration ethics versus pure research, while remaining cognizant of the requirements contained within both federal and state law. IFSP and IEP teams are mandated by law to provide services that will address the unique individual needs of each child. Parents are members of the IEP team. I have personally attended numerous IFSP/IEP meetings in the area in which the Howard et al. study was conducted, and each and every time, all three program options referenced in Mr. Schoneberger's article were discussed and offered to the parents. The final determination then lies with the parents as to what they believe will be the most effective program for their child and their family, because no program or services can be implemented without their consent. Given the fact that all three programs were offered, there is just as much likelihood that a child who ended up in Group 1 in the Howard et al. study could have ended up in Group 3. Mr. Schoneberger provided no evidence to support his contentions to the contrary. If one were to do true "randomized" placements without the input of parents, such placements would be made outside the law and thus would be at risk for significant litigation, despite whatever waivers might have been signed by parents. I am not a scientist nor a researcher, but then neither is Mr. Schoneberger. It is my understanding that the next best type of group research design is one in which the treatment and control groups are matched as closely as possible on variables that are likely to influence treatment outcomes, and where their initial similarity is shown empirically. That is exactly what was done in the study criticized by

Mr. Schoneberger.

Regarding Mr. Schoneberger's first hypothesis, he is basically claiming that the parents who chose Group 2 or 3 obviously do not care enough about their children to provide them with intensive intervention during the hours they are at home with them; thus, their children did not do nearly as well as those whose parents have devoted every moment of their time to attending meetings, receiving training and continuing the intervention during every waking hour. That is not only insulting to parents, it is ludicrous in the extreme to suggest that a parent's choice of a particular program equates with lack of interest or caring on their part.

The second hypothesis is where Mr. Schoneberger states, "..... other members of the team doubtless used their expertise to influence the final decision." Not only does this statement malign the conduct of Regional Center and school district staff, it is contradictory to earlier statements. If staff have a fiduciary duty to only assign those children to intensive ABA who will benefit educationally, then given that competently delivered early intensive ABA has been shown to produce substantial benefits for the majority of children who receive it, the staff would be required to advocate for every child with autism that intervention. Mr. Schoneberger's insinuation that children were selected for the intensive ABA group in the Howard et al. study who were most likely to benefit from it is completely without merit and certainly without any concrete evidence to support it. There is at present no way to determine in advance and with reasonable certainty which children will respond dramatically to that treatment.

Mr. Schoneberger then proceeds to make what he considers to be a "reasonable assumption" about Therapeutic Pathways' ("TP") decision-making power regarding school placement. I have reviewed the manual he referred to; his statement is a gross misrepresentation of part of the text in that manual that refers to the point when a child is transitioned from intensive ABA into a regular education classroom. Educators and parents agree that the regular education teacher can make or break an inclusion experience for a child. If the teacher is unwilling to work collaboratively with the parents and ABA service providers on behalf of the child, the likelihood that the inclusion experience will be successful is significantly diminished. Therefore, many services providers such as TP provide professional input to parents regarding the classroom placement options. That input does not usurp the role of the parents or of the IEP team. To my knowledge, the statement from the TP manual that Mr. Schoneberger presented out of context has never been written into an IEP document, nor has the issue of choosing an inclusion placement been considered during initial IFSP/IEP meetings when a child's placement was being determined, because at that point it was not known when or whether selection of an inclusion placement would be relevant for that child.

I appreciate the fact that Ms. Schoneberger provided a disclaimer at the end of his article, stating that his views are not necessarily shared by his employer or fellow employees. Given that his employer has participated in numerous IFSP/IEP meetings that have resulted in their supporting the placements of children who participated in the Howard et al. study, it would be rather ironic if they were now questioning the process or the treatments.

Mr. Schoneberger goes on to criticize the assessment instruments used in the Howard et al. study, yet he provides no evidence that any of those instruments are not valid or reliable for this population of children. His criticism that different tests were used with some children at baseline and followup is uninformed. A knowledgeable evaluator must choose testing instruments based on a child's chronological age, developmental level, and overall functioning, as well as whether the test is normed for children of that age and has been shown to produce valid results with children with autism. For example, a test of cognitive skills or development that is appropriate for a 3-year-old with autism who is just entering treatment may well be inappropriate for that child at age 4, especially if the child has acquired substantial skills through treatment.

Finally, Mr. Schoneberger asserts that Howard et al. did not comply with some vaguely defined "guidelines" regarding methods to be used in studies of treatment outcomes for children with autism, yet he does not cite the source of those "guidelines." Frankly, that is because there are no such guidelines. This appears to be a blatant attempt by Mr. Schoneberger to plant a seed in the minds of the general public that the people involved in this study violated some official or legal requirements.

Although my own son has never participated in a Therapeutic Pathways program, I have personally observed a number of the children who have and can say unequivocally that the quality of treatment provided by TP and the expertise of their staff are of the highest levels. Further, my professional interactions with the authors of the Howard et al. study have provided me with clear and convincing evidence not only of their ethical conduct related to the work that they do, but of their care and concern for all of the children and their families who must live with the diagnosis of autism.

I do not know what Mr. Schoneberger's agenda was in writing his article, but it appears to be a personal one. He has never conducted any related research of his own that I am aware of, nor is he currently involved in any research that would at least provide some logical, informed basis for his criticisms. The fact that Mr. Schoneberger provides consultation to some of the eclectic programs referenced in the study seems a likely source of at least some of his obvious personal biases. It is unfortunate that you did not verify the truth and veracity of some of the statements he made prior to publishing his article in your journal. I believe you had a responsibility to check the source and the accuracy of his allegations before disseminating them publicly.

The worst part of this entire situation is the potential negative impact Schoneberger's article may have on children with autism everywhere. If I did not have personal knowledge of the staff at VMRC, local school districts, and TP, after reading his article I would seriously question both the validity of the Howard et al. study and the ethical conduct of those involved. For those reasons alone, it would not surprise me if the authors of the study decided to seek a legal remedy for the damage you and Mr. Schoneberger have done to their reputations and their professional livelihoods. Mr. Schoneberger's article and his aggressive dissemination of it have not only provided irrefutable evidence of his blatant disregard for children with autism and their families, it also has the potential to undo years of hard work by all parties to the collaborative process in our region for developing and accessing effective, science-based treatment for these special children. I would like to see a retraction printed of Mr. Schoneberger's article.

Reference

Schoneberger, T. (2006) EIBT Research After Lovaas (1987): A Tale of Two Studies. Journal of Speech-Language Pathology and Applied Behavior Analysis. Vol. 1, No 3., pp. 207-217.

Author Contact Information

Debra J. Wright

4322 St. Andrews Drive

Stockton, CA 95219

Phone: 209-473-3419

e-mail: fairdbr@comcast.net
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Article Details
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Author:Wright, Debra J.
Publication:The Journal of Speech-Language Pathology and Applied Behavior Analysis
Geographic Code:1USA
Date:Jun 22, 2007
Words:1921
Previous Article:Using electropalatographic feedback to treat the speech of a child with severe-to-profound hearing loss.
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