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IYC Articles - CommentsReaders' comments on Katharine Beals' "Early Intervention in Deafness and Autism: One Family’s Experiences, Reflections, and Recommendations”Dear ISEI Members, Thanks so much to all of you who participated in the Infants and Young Children Articles and Comments Page on the ISEI Website. The comments for Katharine Beals' article entitled "Early Intervention in Deafness and Autism: One Family’s Experiences, Reflections, and Recommendations”can be found below. Please note that two new articles have been placed on the Current IYC Articles & Comments. All previous articles will continue to be available by accessing the “IYC Previous Articles (pdfs) & Comments.” Best regards Mike Guralnick COMMENTS FROM WEB PAGE WITH KATHARINE BEALS' REPLY FOLLOWING (IN CAPS): comment dateposted 12/14/2004 This article is an interesting description of a parent's experience with the early intervention systems for deafness and autism. As a therapist and researcher in autism intervention, I too have experienced the frustration of too much opinion and too little real information. Two aspects of the autism field, however, give me hope that we can achieve the kind of well-articulated interventions that are common in deaf intervention. First, researchers in the field are vigorously seeking detailed, empirically based information that will lead to more consensus, more effective therapy, and better descriptions of that therapy. Second, practitioners in the field are increasingly open to new information and are improving in their ability to tailor intervention to the needs of the individual child. There are several well-designed intervention studies documenting the effects of some of the newer intervention techniques in applied behavior analysis and developmental therapy currently underway. One of the approaches described in the article, ""Floor Time"", does not have a strong research base, but the other, applied behavior analysis, has been steadily building a base of empirical information, as well as broadening its goals and strategies, over the last 18 years. My hope is that these newer studies will enable all of us in the early intervention field to provide more effective therapy. In addition, many practitioners in the field of autism intervention recognize that one size does not fit all. Although the top-level ""gurus"" may be at odds with one another from time to time, a growing number of clinicians are incorporating a greater variety of techniques in their therapy. This may in part be due to the fundamental philosophy of the intervention approach with the strongest empirical support, applied behavior analysis. That philosophy is that every intervention should be tailored to meet the needs of the individual child, based not on a manual or preconceived ideas about how the child ""should"" respond, but on how the child actually does respond. This process of individualization requires the clinician to have a large ""tool kit"" of intervention techniques and strategies, and a therapist needs extensive training and supervised practice in order to use those tools effectively. I am not sure that any manual, however detailed, will ever substitute for a trained, experienced clinician. Fortunately, training in a variety of intervention approaches is becoming more widely available. I and my colleagues have benefited from learning new and alternative strategies, and I hope that the children we work with will be better off as a result. Finally, my heart goes out to all the children and parents who have had to deal with the difficult, painstaking, and adversarial process of developing and testing reliable, data-based, effective therapy. The process is far from complete and the information we have at present is not adequate to meet the needs of the children who need us today. Unfortunately, without engaging in this excruciatingly slow process, our field will never be able to offer more than gurus, controversy, and false hope. Kathleen Zanolli, Ph.D. BCBA I’M HAPPY TO HEAR FROM KATHLEEN ZANOLLI THAT A GROWING NUMBER OF CLINICIANS ARE USING A GREATER VARIETY OF TECHNIQUES WITH THEIR AUTISTIC CLIENTS. MY IMPRESSION HAS ALWAYS BEEN THAT THOSE WHO WORK DIRECTLY WITH AUTISTIC CHILDREN RECOGNIZE THAT ONE SIZE DOES NOT FIT ALL, AND SUPPLEMENT THE “STANDARD” THERAPIES WITH THEIR OWN RESOURCEFULNESS AND INGENUITY. IT’S ALSO NICE TO HEAR THAT RESEARCHERS ARE NOW SEEKING EMPIRICAL DATA ABOUT WHICH THERAPIES WORK. A RECENT ARTICLE IN THE NEW YORK TIMES, ENTITLED “TO TREAT AUTISM, PARENTS TAKE A LEAP OF FAITH” (12/27/04), REPORTS THAT THE SCIENCE BEHIND THE STANDARD AUTISM THERAPIES LIKE A.B.A AND FLOOR TIME IS STILL ”MODEST AT BEST”. “THE MOST RECENT ANALYSIS OF TREATMENT RESEARCH, FINANCED BY THE NATIONAL INSTITUTES OF HEALTH AND SCHEDULED TO BE PUBLISHED NEXT YEAR,” SAYS THE TIMES, “CONCLUDES THAT ALTHOUGH BEHAVIOR TREATMENTS BENEFIT MANY CHILDREN, THERE IS NO EVIDENCE THAT ANY PARTICULAR TREATMENT LEADS TO RECOVERY.” IN PARTICULAR, TRISTAM SMITH’S 2000 STUDY SHOWS ONLY 2 OF 15 CHILDREN “SCOR[ING] AT AGE LEVEL ON ALL MEASURES AND ENTERING REGULAR CLASSROOMS” AFTER TWO YEARS OF INTENSIVE A.B.A. I SUSPECT THAT ONE REASON WHY THE RESULTS OF DIFFERENT THERAPIES ARE SO INCONSISTENT AMONG DIFFERENT CHILDREN IS THAT AUTISM IS REALLY A BUNCH OF DISTINCT DISORDERS THAT RESEMBLE ONE ANOTHER SOLELY IN THE RATHER SKETCHY AND SUPERFICIAL CRITERIA OF THE DSM-IV. SOME FORMS OF AUTISM ARE SUSCEPTIBLE TO MARKED IMPROVEMENT OR EVEN RECOVERY; OTHERS NOT. THIS MAY ALSO EXPLAIN WHY AUTISM RESEARCH HAS SO FAR BEEN SO TENTATIVE AND MODEST IN ITS CONCLUSIONS. TODAY’S CANCER RESEARCH IS INSTRUCTIVE: ONLY WHEN RESEARCHERS REALIZED THAT CANCER IS NOT A SINGLE DISEASE, BUT A BUNCH OF DISTINCT DISEASES THAT RESEMBLE ONE ANOTHER ONLY SUPERFICIALLY, DID THEY BEGIN TO MAKE SIGNIFICANT DISCOVERIES ABOUT ITS CAUSE, PREVENTION AND TREATMENT. MY OWN RESEARCH AS A PH.D. IN LINGUISTICS AND AS THE MOTHER OF AN AUTISTIC CHILD HAS LED ME TO ONE POSSIBLE SUBGROUP WITHIN AUTISM. THESE ARE KIDS WHO, LIKE MY SON, ARE SOCIALLY ALOOF ENOUGH TO HAVE MISSED OUT ON MUCH OF THE GRAMMAR OF THEIR NATIVE LANGUAGES, BUT HIGH FUNCTIONING ENOUGH TO BE ABLE TO READ, SPELL AND TYPE. IDENTIFYING THIS CONSTELLATION OF SKILLS FOR THIS PARTICULAR GROUP HAS ALLOWED ME TO DEVELOP A LANGUAGE CURRICULUM AND TEACHING STRATEGY THAT IS FAR MORE SPECIFIC THAN ANY OTHER AUTISM LANGUAGE CURRICULUM CURRENTLY AVAILABLE (INTERESTED PARTIES CAN LEARN MORE AT MY WEBSITE, HTTP://AUTISM-LANGUAGE-THERAPIES.COM). BUT NONE OF THE AUTISM RESEARCHERS I’VE SPOKEN WITH HAS SEEMED PARTICULARLY INTERESTED IN ACTIVELY SEEKING OUT SPECIFIC SUBTYPES. TWO RESEARCHERS AT ONE OF THE U.S.’S PRE-EMINENT RESEARCH CENTERS TOLD ME THAT THEY’D NEVER EVEN NOTICED KIDS WHO HAVE TROUBLE WITH GRAMMAR BUT CAN READ AND SPELL; I NOW HAVE SURVEYS OF OVER 100 OF SUCH KIDS. PAYING ATTENTION TO SUBTYPES WOULD ALLOW SPECIALISTS IN PARTICULAR SUBTYPES TO COLLABORATE IN CREATING DETAILED CURRICULA INSTEAD OF REQUIRING INDIVIDUAL THERAPISTS TO DO SO ON THEIR OWN (REINVENTING THE WHEEL AGAIN AND AGAIN?) FOR EACH OF THEIR MANY DIFFERENT CLIENTS. 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