Schafer Autism Report - July 25, 2003

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Slender and blond, 4-year-old Jared Dick picks up a game controller to play what he calls “monkey ball” and slips into his self-absorbed Nintendo heaven.

His behavioral therapist, Kelly Mulligan, waits as the boy’s mother negotiates a deal. Minutes later, Jared walks quietly downstairs to his therapy room.

Back then, Bill and Jennifer Dick never even dared take their son to a restaurant. His behavior wasn’t like just any out-of-control brat. He repeatedly dashed full-speed down aisles and did headstands in the booths, kicking strangers.

Jared has autism, a term describing not only a mysterious brain disorder of diminished social and communication abilities but also a parental nightmare.

Downstairs, Mulligan teaches the final skills Jared will need for kindergarten, which is fast approaching.

For his parents, Jared’s controversial educational therapy has been a prolonged, expensive and draining ordeal, but one they credit with saving their son from an isolated life, years of special-education classes and, ultimately, adult disability work programs.

The family’s out-of-pocket-costs so far total $50,000, of which the grandparents paid $10,000. Even after getting a second mortgage, the Dicks’ outstanding debts total $16,000.

But she would do it again, Jennifer said, in a heartbeat, just to have her son be able to tell her, “Mom, I love you.”

This is a story of one family’s triumph, but its implications stretch far beyond to the increasing thousands of children diagnosed with autism each year. They reach also to taxpayers, now paying nearly $100 billion annually for the care of autistic adults.

Their story begins two years ago with the birth of the Dicks’ second son, Caleb.

Jared, then 21/2, couldn’t have cared less about having a baby brother. Jared’s “terrible 2’s,” Jennifer recalled, were out of control and getting worse.

The grandparent then caring for Jared as his mother worked as a nurse told her she was getting too old to do day care any longer.

Jared had other oddities. He often repeated the words of others. He once lined up toy cars at the top of a slide and pushed them down one by one for an hour. He was aloof and withdrawn.

But the Dicks never noticed -- or admitted to themselves -- just how far their child had fallen behind others.

At his new day care, however, it wasn’t long before a director called with concerns. Later testing found Jared was straddling the border of someone mildly to moderately autistic.

“I was devastated,” Jennifer said. “The vision you have for your child is gone.”

At age 3, Jared’s language skills were nearly two years behind normal development. His IQ score of 65 placed his intelligence well below normal.

Bill’s health insurance policy excludes payment for autism treatment, but there was some financial help available. For children under age 3, there is early intervention public assistance. Federal law guarantees a free, appropriate public education for children between the ages of 3 and 21. Parents and lawmakers, however, can differ greatly over the meaning of “appropriate public education.”

Jared soon entered an early assistance class with about nine other children, some having different types of disabilities, Jennifer said.

As she read up on the various autism treatment programs available, applied behavioral analysis emerged as the one with the most proven success record. It was also extremely expensive, requiring one-on-one instruction for 40 hours each week over a period of years. Therapy costs would reach as high as $115 per hour.

But they soon agreed that the school district’s early childhood special-education program was failing Jared, and time was running short. Jared needed not a Chevy education if he was going to have a chance at success, Jennifer said, but a Cadillac education.

The Dicks put Jared in a program now operating under the name of LIFE Midwest. The small organization began providing intensive applied behavioral analysis in Nebraska about two years ago.

“As soon as we got him out of ECSE program, he was almost exponentially better,” Bill said. They came to think of the costs as paying for their child’s college education 15 years early, said Bill, 33.

Before 1987, the widely held prognosis for infantile autism was of certain and severe lifelong disability.

That was also the year Los Angeles clinical psychologist Ivar Lovaas published findings from a landmark study of autistic children. Lovaas subjected autistic children to the proven techniques of applied behavioral analysis, but for 40 hours weekly, lasting two years. At the end of the experiment, half of those who received the intensive training no longer met the criteria for an autism diagnosis. Even among those who did, improvement was markedly greater in comparison to their peers.

The study findings remained relatively obscure, but applied behavioral analysis gained a boost in the early 1990s with Catherine Maurice’s autobiographical account, “Let Me Hear Your Voice.” Her story tells of struggles to find effective treatment for her two autistic children, now thriving, she claims, due to applied behavioral analysis.

In the world of autism today, there exist a large number of treatment approaches. They include: • Applied behavioral analysis: It operates under the principle that behavior rewarded is more likely to be repeated than behavior ignored.

• Discrete trial training :A subset of ABA that involves working one-on-one with trained professionals 30 to 40 hours each week, moving gradually from simple to complex skills.

• Treatment and education of autistic and related communication handicapped children: It centers on adapting the learning environment to the child rather than the child to the environment.

• Picture exchange communication systems: It uses ABA methods in teaching children to exchange a picture for something they want.

• Social stories: Uses storytelling to help children learn appropriate responses in common social situations.

(PACE) filed an application to open the first special education charter school in Virginia on July 1st.

The charter school will utilize Applied Behavior Analysis (ABA), the only educational intervention with scientific evidence in peer reviewed journals of its efficacy. In 1999, the New York State Department of Health completed a three year study on “best practices” for the diagnosis and treatment of children with autism. Their conclusion, based on evaluation of the scientific literature, was that ABA is the best practice for young children with autism. Similarly, the U.S. Surgeon General commented favorably on ABA. Presently, Fairfax County Public Schools (FCPS) is not using a true ABA model in any of its autism programs.

PACE, a not for profit organization of parents in Northern Virginia who have children with autism, filed their application with the Fairfax County Public Schools (FCPS) this afternoon to open The PACE School beginning in July 2004. PACE looks forward to working with FCPS to refine its application and to obtain approval for this charter school by the December 1, 2003 deadline.

The National Research Council issued a report in 2001 identifying certain minimal criteria for an effective and appropriate educational program for children with autism under the age of eight. Some of the report ‘s recommendations included the need for equivalent of a full school day, five days (25 hours) a week, with full year programming; repeated, planned teaching opportunities; ongoing program evaluation and assessments of each child’s progress, with results translated into programming adjustments; and, to the extent appropriate, specialized instruction in settings with typically developing children. It is the goal of The PACE School to ensure compliance with these minimums through the use of ABA.

As PACE’s President, Tom Urban, explained, “It is not the intention of PACE to take any money away from existing FCPS programs for children with autism or from programs for any other children. Under a recent Virginia law and new FCPS regulations, the charter school would be entitled to the same amount of money that is presently being used to educate our children. Therefore, what would occur is merely a shifting of resources. Money that formerly would have been used to educate a child with autism in that child’s present program will be applied to the charter school when the child moves there.”

The PACE School’s Chairman Randy Nicklas added, “The primary benefit of the charter school is that it would allow parents a more direct voice in the education of their own children without having to resort to home schooling or private placement. In addition, a charter school will allow parents to raise money from other sources to fund a program that has proven effectiveness, but the existing FCPS school board is resistant to fund. With less bureaucratic overhead, the charter school will run more efficiently and respond more rapidly to each child’s individual needs. Moreover, we will be able to break out of the ‘one size fits all’ mentality that permeates too many FCPS programs as each child’s ABA program will be individualized with regular consultant monitoring.”

WASHINGTON, Jul 23, 2003 (United Press International via COMTEX) -- Lawmakers, researchers and parents Wednesday called on President Bush to convene a conference of health experts to tackle ballooning autism rates among American children.

Recent reports suggest as many as out of every 150 American kids may have the disease - up from 1 in 10,000 just a decade ago - in an epidemic laying siege to American families that could cost the American economy between $200 and $400 billion by 2010, according to autism support groups.

A group of lawmakers said Wednesday that Bush should convene the conference because U.S. health agencies have so far failed to investigate the epidemic.

“I feel very strongly that NIH [the National Institutes of Health] and the CDC [Centers for Disease Control and Prevention] have failed to do the necessary research,” said Rep. Dave Weldon, R-Fla., a physician.

Indiana Republican Rep. Dan Burton, whose grandson has autism, and Ohio Rep. Dennis Kucinich, a Democratic presidential candidate, also called on Bush to ratchet up government work on autism.

“It is time for a White House conference on autism,” said Kucinich. Kucinich said 1.5 million Americans might suffer from the condition.

A panel of researchers discussed possible environmental causes for the epidemic, including mercury exposure from vaccines. The mercury-based additive called thimerosal was particularly prevalent during the 1990’s -- when vaccine doses for children doubled and autism rates skyrocketed.

“As a physician, I am particularly concerned about the safety of our vaccine supply,” Weldon said.

Doctors discussed studies that appear to show that children with autism may not be able to secrete mercury, poisoning them, and discussed research that appears to show a correlation between increasing exposure to mercury from vaccines and rising brain problems in children.

Some doctors expressed anger at government health experts who they said are ignoring the problem. Government health agencies set childhood vaccination schedules.

“What we have here are some bureaucrats who want to keep this under cover,” said Boyd Haley, chairman of the Chemistry Department at the University of Kentucky.

The Centers for Disease Control and Prevention in June 2000 called for the removal of thimerosal from vaccines “because any potential risk from mercury is of concern.” But the agency said, “However, there remains no convincing evidence of harm caused by low levels of thimerosal in vaccines.”

In October 2001, an Institute of Medicine panel found that it is “biologically plausible” that thimerosal causes autism, but that, “current scientific evidence neither proves nor disproves a link.”

Thirty years ago, she went to battle for her daughter, Grace, who had Down syndrome, pushing for stronger state and federal laws to protect schoolchildren with special needs.

Now Kelly is warning anyone who will listen that the safeguards she helped win are in jeopardy.

“We cannot permit the federal law to be weakened to the point where school districts will be allowed to do whatever they want,” she said. “If the law does not demand it, children will not be served.”

Kelly referred to a debate over proposed changes to a federal law governing special education. As Washington politicians haggle over details, tensions are flaring on a more local level in Milwaukee and other regions of the country.

Many school administrators argue that the changes being vetted - different rules for education plans and discipline - would cut down on unnecessary paperwork and provide districts with more flexibility. But parents and advocacy groups worry they also would remove safeguards that protect children.

If nothing else, the conflict has highlighted the long-standing debate over how to teach, discipline and assess students with physical and mental disabilities.

“We sometimes have a lack of communication because teachers are very busy in the classrooms and don’t have enough time to communicate with the parents,” said Monica Lopez, whose two sons are special education students at Milwaukee’s Riverside High School and Manitoba Elementary School. “And parents don’t always know their responsibilities and rights. It can create an atmosphere of mistrust.”

Law dates to 1975 The Individuals with Disabilities Education Act was passed in 1975 with the goal of ensuring that special education students receive fair treatment and school districts receive full funding from the federal government.

The state of Wisconsin has 127,000 students in special education, about 12% of the state’s students. Milwaukee Public Schools has about 18,000 special education students, 17% of its students.

A revision approved by the House of Representatives in the spring would reduce the paperwork requirements for schools and allow teachers to discipline special education students in the same way they do their other students. Current law says that special education students can be removed from the classroom for only 10 days - after that they must be placed in an alternative setting or receive services outlined in their individual education plan.

The House version also would allow for three-year education plans for special education students, instead of the one-year requirement.

A Senate version of the legislation - which has not been voted on yet - makes more moderate changes. It would allow districts to shift toward three-year education plans only for students older than 18, for instance.

Several organizations representing school administrators have hailed the House version.

“People are drowning in paperwork,” said Patricia Yahle, the director of compliance and monitoring in MPS’ department of special services. She said she supports some form of compromise between the House and Senate versions of the bill.

Glenn Schmidt, a special education teacher at Wisconsin’s Sun Prairie School District, said he recently wrote a 50-page education plan for a student because of a requirement in the law.

“It’s gotten to the point where the education plans are absolutely incomprehensible to parents,” he said. “There has to be some way of cutting down on the amount of paperwork required to get a child some special help.”

Milwaukee School Board member Joe Dannecker, chairman of the board’s special education committee, noted that what parents and advocates for special education may view as “procedural safeguards,” teachers and administrators might view as “jumping through hoops.”

He favors the House version of the law because, he says, it eliminates some of those hoops and focuses instead on how to serve students well.

“Teachers can spend more time checking procedural requirements against calendars than figuring out how to serve a kid,” he said.

Dannecker also supports the provision in the House bill that calls for special education students to be disciplined just as regular education ones are.

“We have this tremendous sense that the tension between special education and regular education parents may be growing partly because of the shortage of resources and partly because children come home from school with this perception that other kids are allowed to do things they are not allowed to do, and behave in ways they are not allowed to behave,” Dannecker said.

Advocates, parents opposed The proposed changes are anathema, however, to groups such as the Wisconsin Coalition for Advocacy, which fights for people with disabilities, as well as parents such as Lila Kelly.

“You look at those who support the House bill, and there isn’t a single parent, child or disability group on the list,” said Jeff Spitzer-Resnick, a managing attorney at the Coalition for Advocacy. The group has sued MPS and the state’s Department of Public Instruction over the district’s special education system.

Her daughter Jennifer, who is 6 years old and autistic, attends MPS’ Elm Creative Arts Elementary School; Rojas is part of a group of Latino parents whose children have special needs.

“I think the changes are going to favor the schools, but not the children,” she said.

Rojas does not believe Jennifer should be disciplined in the same manner as other children in the school.

“My daughter does not really understand and copies a lot of the other children,” Rojas said. “She copies the bad things, too. The children just can’t be measured in the same way.”

Kelly said the House bill gives everyone other than parents and students additional power.

Despite the divide over specific provisions of the bill, many parents, teachers and administrators say they essentially want the same things: Better funding for special education and a system that helps students succeed.

Other legislation has crowded the reauthorization of the IDEA bill off the Senate calendar. It now appears senators won’t vote on an IDEA proposal until they return from a month long recess in early September. They are on break from Aug. 4 to Sept. 1.

Does your Family Include A Child With Autism or Asperger Syndrome between the ages of 12 and 17 years? (Must live in Washington.)

[The Schafer Autism Report does not evaluate research projects or research findings. This information is provided for our readers’ information only.]

If so, we need your help in discovering the relation between brain functioning and memory in autism.

A research team led by Dr. Sara Webb, Dr. Geraldine Dawson and Jamie McPartland at the University of Washington Center on Human Development and Disabilities is conducting research on brain functioning and memory in children and adolescents. This project will allow us to determine whether differences in memory are related to differences in how the brain processes visual images. To help us understand these areas of brain development in individuals with autism, we are inviting individuals between the ages of 12 and 17 years who have been diagnosed with autism spectrum disorders to participate in a research study.

Individuals would participate in a study using behavioral tests and EEG measures of brain functioning. Individuals who participate will receive $25.00 for each visit and will be helping us understand how brain structure and function are involved in autism. If your family includes a child with autism or typical development between the ages of 12 and 17 years of age, and you are interested in participating in this study, please contact Jamie McPartland at 206-616-2379 or 1-800-994-9701.

The University of Texas at Austin has developed an on-line survey for parents of children with autism.

The survey asks parents to indicated which treatments they are currently using or have used in the past. The survey has been approved by the IRB of the University of Texas at Austin and includes a consent form that parents will see when they access the website.

The survey is anonymous and can be completed in about 10-15 minutes by visiting the following website:

“Thank you for your article in the Living section of the San Francisco Chronicle on Sunday, July 20, 2003 (Joshunda Sanders, Life With Cameron). Autism has been recently receiving a fair amount of media coverage and it is likely that awareness will contribute to better solutions for families and individuals struggling with autism. Your contribution is noteworthy.

As a practitioner with over 30 years of experience, I would like to make a few clarifying comments.

In your article you noted that “What has worked best for Cameron is applied behavioral analysis therapy, a method also known as Lovaas, which structures the environment for autistic children and rewards them for improving.” Applied Behavior Analysis (ABA) is the methodology with the greatest scientific support. It has been repeatedly demonstrated to be effective under controlled conditions in laboratory and clinical situations. Interventions that do not include ABA components - there are many - are primarily supported by anecdotes and testimonials at best.

“Lovaas therapy” is a name given to a small subset of ABA practices more specifically known as Discrete Trials Teaching (DTT). Ivar Lovaas, at UCLA, is the pioneering researcher and educator who over the past 30 years has helped gain acceptance for DTT among those responsible for caring for individuals diagnosed with autism. DTT is a method in which a stimulus is presented (e.g., the individual is shown a cookie), a response is produced (e.g., the individual says “cookie”), and a reinforcer, sometimes called a ‘reward’, is provided (e.g., the individual is given the cookie to eat). ABA is a much broader discipline than DTT.

Has anyone told Bill Gates that he has aspergers, and has anyone told him about vaccine injury? - Richard

Anyone have compliments or complaints. We are looking to move in Washington, schools in the surrounding areas of Seattle and the same with Medford, Oregon. Private day schools or public schools with quality special ed departments. Sally Krallcamp@aol.com

Could anyone give me any suggestions to fully toilet train my non-verbal autistic 7 year old son? He seems to understand his toileting needs very well at home; he goes on his own; he needs assistance only in cleaning himself and washing up after that. But elsewhere he just soils himself without indicating anything. He goes to the toilet at least 4-5 times a day at irregular intervals. So it is difficult to stop him soiling himself by making him go once a day regularly. susmita@dlfpower.com

Have great school svcs in CA. Need to move to Beaverton/Portland OR. Been told by some that services are non-existent in that area. Can readers confirm/deny this for us? Maia mcevart@comcast.net

A behavior consultant in the Sacramento area, Patricia Schetter, is developing an inservice videotape to help educators recognize possible HFA/AS students. She needs either existing video of elementary and secondary HFA/AS children or parents that are willing to allow their HFA/AS children to be videotaped. If you are willing to help with this important project, please contact me and I will put you in touch with her. LWeissmann@aol.com

The Autism Consortium of the Mailman Segal Institute and Fischler Graduate Teacher Education Program will begin offering 4 courses on autism at the master’s level in August. The first course will be Nature and Needs of Students with Autism Spectrum Disorders and will be offered as part of a Master’s in special education or speech and language pathology or for non-degree-seeking students. Courses will be offered online as well as face-to-face with compressed video for in Jacksonville, Tampa, Orlando, Ft. Lauderdale, and Miami. Courses will be offered 1 each during each 8-week session in Nova’s calendar. Nature and Needs will begin the week of August 11 with registration ending August 4, 2003. Contact Susan Kabot and Christine Reeve at autism@nova.edu or call us at (954) 262-7154.

Deadline for ‘Essay Contest’ submissions is September 1, 2003: Autism Arts Conference Connection http://www.autismarts.com

Does anyone know of a book or video that may help in teaching a child with autism water safety and swimming skills? Dawn M. O’Neil dawnoneil@adelphia.net

On July 26-27, I will be blogging 24 hours straight for Cure Autism Now in Blogathon 2003. As the mother of two autistic children, Sam (5) and Jonah (3), I hope you’ll either be able to sponsor me, have a friend sponsor me, or just stay up with me as I wear my fingers to the bone blogging for our kids. Visit my home blog at http://wampum.wabanaki.net for details

A variety of tips and resources for parents and educators on how to use MUSIC activities such as singing and instruments to motivate and teach your child. Visit www.coastmusictherapy.com (go to “tips” page)

I have a 15 year old son with Autism. I am also a Special Ed teacher and so I have been keeping up with research throughout these years. However, I missed the connection with Rogam and Thimerisol. I received Rogam while I was pregnant, too. Where can I get more info? Susan Disbrow JSGD@aol.com

We area military family living in Athens Ga. & looking for ABA therapists interested in working 10 hrs./week with our 2 1/2 yr-old son who has Autism Spectrum Disorder. Program will be supervised by LOVAAS. If interested, e-mailme directly: evelyn1@usa.net

Please send me any articles about speech being medically necessary for restoring speech in autistic children. We are appealing, at the second level, with Blue Cross Blue Shield of New Jersey and are in search of any and all information supporting speech restoration in autistics. We are looking for reembursment of speech costs while our son was in early intervention. We have hired an attorney and are fighting the school district simultaneously to have our three year old son stay in a home program with some inclusion in a nondisabled preschool/daycare. Antoinette fifoot@msn.com

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