May 20, 1997
Brookline School Committee
333 Washington Street
Brookline, MA 02146
Dear Committee Members:
Our son Alexander was referred to the Brookline Schools for evaluation in October 1994 at age 2.10. He had little language and spent most of his time in ritualistic behaviors. Although we and the referring school noted many behaviors characteristic of autism, no psychological or developmental evaluation was scheduled for several months. It took five months to complete all the appropriate evaluations and receive a diagnosis of PDD.
At age 3 Alex had a developmental age of 1.11, a 13 month deficit. The evaluation TEAM promised us that they knew exactly what to do for children with pervasive developmental disorders, and we trusted that they would give him all the appropriate services he needed. We were offered no training on how to deal with the enormous challenges in raising an autistic child. At this point we had confidence in the TEAM's expertise and accepted their recommendations without question.
Alex was given 1.5 hours/week of group speech therapy starting at age 3.3, which continued until age 3.9. Services were reduced during the Summer to a total of 9 hours in 3 months. No justification was given for this reduction in services. By this time he had developed aggressive behaviors so severe that it was difficult for our family to function in public.
In September 1995 Alex was placed at the Lynch Center in a 10 hour/week program, even though longer programs existed. At enrollment, we informed the administration of our concern about Alex's aggression. No behavior management plan was proposed. He soon started attacking a certain girl nearly every day, although the TEAM never informed us of that fact. We discovered the problem only when Jennifer picked up Alex after school in November and was horrified to watch him hold a girl in a headlock and slam his hand into her face. Desperate for help, we called several TEAM members and the SPED office, and asked to speak to the school psychologist. We were assured that the school was effectively managing the problem.
Concerned also that Alex was not showing any new skills we proposed supplementing his program with additional speech therapy at our expense. The TEAM unanimously recommended that we not do so. We decided to begin supplemental services anyway.
In January 1996, at age 4, alarmed that he had made almost no progress in language, play, or social skills, and unable to live with the worsening behavior problems, we took Alex to a neurologist (Dr. Margaret Bauman) for the first of several independent evaluations. We received a clear diagnosis of autism and the prognosis that Alex had the strong potential to make substantial progress given a full-time program using effective techniques. We then paid for a psychologist that Brookline trusted to observe Alex at school. She informed us and the staff that there were many missed opportunities for learning in the classroom. We continued an intensive search for information on the treatment of autism, talking to other parents and visiting public and private schools, then sharing all the results of that research with Alex's TEAM.
The result of all this was to alter the wording of one section of Alex's IEP and to add a weekly communication notebook. No program changes were made, and the TEAM continued to insist that he was progressing to his maximum potential at the Lynch Center. (This pattern continues: over the past two years we have had 8 independent evaluations of Alexander and his program, and not once has the TEAM accepted the program recommendations of outside professionals.)
In April 1996, at age 4.4, we convinced the school to fund a one-on-one home therapy program at about 6 hours/week. We were amazed at the results: Alex started to pick up language and play skills at a rate we had never seen before. Convinced by this experience, and by a substantial body of research literature, we decided to ask for an even more intensive program of one-on-one instruction.
Independent testing in June, 1996 showed that Alex's language skills had changed from a 13 month deficit at age 3, to a 17 to 23 month deficit at age 4.6. Despite Brookline's best efforts and supplemental language services, he had fallen substantially farther behind his peers. We brought this to the attention of the TEAM, and were surprised to receive a letter stating that "a review of Alexander's records shows he has made substantial gains." We simply could not understand why it was considered acceptable to have our child fall farther and farther behind when more than one independent expert had noted his potential for normal functioning.
In June 1996 we rejected Alex's IEP and requested a comprehensive program consisting of one-on-one services at home and a full-time aide at school. Both components are necessary to ensure coordination and consistency, two essential foundations of the treatment of autism. Our request was carefully researched and based on models proven effective in other schools in Massachusetts. We were guided by the recommendations of independent experts in autism, other parents with children similar to Alex, and the experiences of a teacher, trained in Brookline, who leads an integrated classroom with a program almost identical to that in the Lynch Center. It should be noted that none of the professionals advising us had any personal interest in Alex's new program.
We were told that no change to the school program would be considered, and were instead offered alternatives including out-of-district placement as far away as Southborough. We decided on a local private school, but when that fell through in August the other placements were no longer available. We continued to try to implement the recommendations of independent professionals to improve Alex's program at the Lynch Center. We worked hard to start and operate Alex's home program, as the school gave us neither assistance nor funding.
In September 1996, at age 4.9, Alex was placed again at the Lynch Center at 15 hours/week. He was learning rapidly in his home program, but continued acts of aggression and other behavior problems persisted in all settings, placing severe stresses on our entire family. Although this problem had persisted well over a year, we were again assured the school was effectively addressing it. A few months later we were finally offered the parent training program that we should have received at the first indication that our son had autism. A new behavior management plan was put in place, but we were informed that our consultant, who has helped us reduce Alex's aggression in all other settings, would not be allowed to talk to the staff.
We continued to bring scientific research and the experiences of other school districts' programs to the TEAM meetings and to every appropriate school administrator. The classroom observations of four independent professionals, including two who had worked for Brookline, all indicated deficiencies in the Lynch Center program. A TEAM member told us bluntly that 30 years of research on recovery from autism was simply not valid, and that "we are not in the habit of looking at other people's programs." No TEAM member has ever noted any defect in our son's program, although we have been told repeatedly that our unwillingness to trust the TEAM's recommendations would harm our child. No one but us ever questioned why Alex had never met a single IEP goal other than toileting.
In March, 1997, at age 5.3, as a result of intervention by the Bureau of Special Education Appeals, we secured a part-time aide for Alexander and funding for a program that we had subsidized for the past 9 months.
Today, at age 5.4, after 500+ hours of state-of-the-art therapy and much improved coordination between Alex's home and school components, our son's future looks bright. We are awaiting further independent testing, but informal observation indicates he has almost closed his language deficits in the past 10 months. Unable a year ago to answer reliably "Do you want apple juice or orange juice?" he now makes up and tells us stories. He rarely attacks his sister or playmates. He is beginning to read and is teaching himself to add, evidence of his high intellectual potential. He is building the skills he needs to be able to learn independently in school, with no aide or special supports. We strongly believe he has the potential for normal intellectual and social functioning.
We are not here to ask any more for our child. He is fortunate to have parents with the time and financial resources to get him the help he needs without the cooperation of or even against the opposition of the school administration. But we are afraid for the many other children with PDD-NOS, autism, or Asperger's who are clearly not receiving the services they need and deserve. It is very sad that the school has made a conscious decision to ignore the results of over 30 years of research on developmental disorders. It is especially frustrating that a school which claims to be willing to spend as much as is needed to help these children is so opposed to using those funds for effective early childhood intervention. We simply do not know where to turn when, for example, we send an administrator research papers on recovery from autism and are told that this action is "pushy, in-your-face," and that statistically valid results are "just your opinion."
Research dating back to the 1970's shows that at least half of children with PDDs who receive intensive early intervention achieve normal functioning in their Kindergarten year. The same research also shows that if intervention is less than intensive, is delayed past age 5, or is not coordinated in all settings, the chances of recovery are reduced five-fold. The results are equally tragic for the children, their parents, and the school system: the children suffer years of serious disability; the parents suffer the burden of raising children at risk of behavior problems and unable to function within their peer groups; and the school, ironically, prides itself on providing "excellent support" year after year after year.
Our experience shows a gradual escalation of services, from one hour a week, to ten, to fifteen, to twenty, to thirty, with the promise of a full-time aide next year. At every step we were assured our autistic child was getting as much as he needed. This is exactly the opposite of the proper approach: a full-time program starting by age 3 would, we believe, have reduced or even eliminated the need for services later on.
The program we have crafted for Alexander does not rely on "philosophy." It certainly does not depend on trust-we were asked, in fact, not to trust our consultants, or the therapists, or even ourselves, but to judge only by results, only by Alexander's measurable progress. It is not new, or experimental; children have been recovering from autism since the 1960's. Scientific journal articles, videotapes of recovered children, and best of all, Alexander himself, prove to us that substantial or complete recovery from autism in early childhood is possible. But there is one essential program component which we cannot provide, even with legal intervention, and that is a school with an open mind. For that reason we are soon moving to another district that uses research and cooperation, not litigation, to craft effective programs.
We propose that the School Committee study the research on autism and developmental disorders; review the records of children with PDDs and compare progress and recovery rates to published data; talk with the staff and administration of other districts that have different approaches; interview parents with developmentally disordered children, including those who have left the district; and make changes to implement a program with true accountability for its results. We believe this will reduce the needless suffering and brighten the futures of the many disabled children to come.
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