As I note regularly here, finding the right school and teachers for Charlie, and making sure the education he’s receiving is appropriate, challenging, tailored to his needs, are our constant concern. ABC News visits the Community School in Decatur, Georgia; the school was the subject of a recent article in the New York Times magazine. The school doesn’t seem quite suited to what Charlie might need, but the focus on educating older—adolescent, teenaged—autistic students really interests me. Sometimes it seems the last time that most of us felt sort of confident that we had an idea about the right sort of educational setting and programming for Charlie was when he was preschool age—–elementary and now middle school remain territory for which there’s only a very rough map.

Learning about a career event in New Jersey that was attended by autistic students and other disabled students turns my mind to even more concerns. The event was held at Novartis Pharmaceuticals Corp. in East Hanover in honor of national Disability Mentoring Day. There were 17 other national sponsors present and 50 New Jersey companies at the event, which was overseen by the American Association of People with Disabilities (AAPD) and, within New Jersey, by Allies, Inc., which advocates for people with disabilities and their families.

Yeah, more to think about—-more new terrain to step into, after I take a really deep breath.

In the midst of an extensive discussion about vaccines and autism and how the two have come to be linked in the public consciousness, as noted by Dr. Paul Offit in his recently published book Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure, here comes a court decision from the Georgia Supreme Court. The decision allows Marcelo and Carolyn Ferrari to proceed with a civil lawsuit against vaccine maker American Home Products Corp. As noted in today’s Athens Banner-Herald, this is a “first-of-a-kind ruling by an appellate court that had drawn fierce opposition from the vaccine industry.” Namely, the Georgia Court of Appeals is the first appellate court in the nation to hold that the National Childhood Vaccine Injury Compensation Act (VICP) does not pre-empt state law.

The Ferraris are claiming that a vaccine manufactured by American Home Products caused damage to their son:

The family believes they can prove that thimerosal, the mercury-based preservative, caused their son’s disability. Stefan, they say, was a talkative toddler before he got a round of boosters shots when he was 18-months-old. The boy, now 10, hasn’t spoken since.

The case has drawn the protests from the vaccine industry as well as powerful right-leaning lobbying groups from the U.S. Chamber of Commerce to the conservative Pacific Legal Foundation.

Seven other state courts have ruled that the federal laws pre-empt any state law that might give families the power to challenge the vaccine manufacturers.

But the Georgia Court of Appeals became the first appellate court in the nation to rule that the federal law doesn’t take precedence over state tort rules, calling the federal statute unclear.

The National Childhood Vaccine Injury Compensation Act, which established the VICP, was passed because “policy makers and public health officials had to take action to ensure that the public was protected and that lawsuits would not threaten the nation’s vaccine supply” (p. 37), as Martin G. Myers, M.D., and Diego Pineda state in their book Do Vaccines Cause That?!: A Guide for Evaluating Vaccine Safety Concerns. From an official description of the VICP:

The VICP was established to ensure an adequate supply of vaccines, stabilize vaccine costs, and establish and maintain an accessible and efficient forum for individuals found to be injured by certain vaccines. The VICP is a no-fault alternative to the traditional tort system for resolving vaccine injury claims that provides compensation to people found to be injured by certain vaccines.

In “Science in Court,” chapter 8 of Autism’s False Prophets, Dr. Offit notes that, as a result of the creation of the VICP, “the number of lawsuits brought against vaccine makers declined dramatically” (157). In “vaccine court,” petitioners must convince a panel of three judges (p. 156); a decision must be reached within 240 days; the average compensation is about $900,000, and “the program is based, for the most part, on a preponderance of sound scientific evidence” (p. 157). Petitioners can still take their case to state courts, where the case has to be argued in front of a jury and where “the process is slower and more expensive”—but, as Dr. Offit notes, “juries have been historically been poor judges of scientific and medical truths.”

More muddied waters ahead.

Who should choose where 8-year-old Arron Collins, who has Asperger Syndrome, goes to school—his parents or the school district? The August 9th MyFoxAtlanta notes:

While the superintendent [of the Oconee County school district' wouldn't discuss Aarons [sic] case he does say in a statement that “there is no documented reason that the needs of students cannot be met at any of our schools, I have not been presented with any reason for any student to be transferred.”

The Collins said a 2007 Georgia law, Senate Bill 10 is on their side. In part it says the general assembly finds “parents are best equipped to make decisions for their children, including the educational setting that will best serve the interests and education needs of their children.”

“It’s very clear when it says parents have the right to choice. They have the right to chose,” said Steve Collins.

The Collins are considering legal representation.

It seems no wonder that right wing talker Michael Savage’s last name is, well, “Savage” after reading what he said about autism on his radio show. I’ll list the words he uses to refer to autism:

moron, putz, idiot, fool, dummy, a girl, losers, beaten men

More of Savage’s savagery is quoted on Left Brain/Right Brain.

If Savage’s intent was to shock, using such words about autistic children is a no-brainer way to do it and perhaps ratings will spike as rightfully indignant autistic self-advocates and parents of autistic children respond. What troubles me in particular is Savage’s contention that autistic children are just brats behaving badly, and brats parented by laissez-faire “let it be” types of parents, especially in the wake of more than a few stories of autistic children who have been removed from a church, a kindergarten classroom, an airplane, and a restaurant. In each case, the children’s behavior was cited as “dangerous” to “public safety” and just downright “unacceptable.”

Funny but behavior like Savage’s–his unacceptable pronouncements about autism—gets air-time. Perhaps we have found the actual parasite……

A Georgia mother and her daughters were kicked out of a Jackson restaurant because one daughter, 4-year-old Alyssa, who is autistic, was crying. Another customer—-Jackson Police Chief Dennis Rushton, it turned out—-said that her crying was “‘beginning to make [his] head hurt.’”

Excluded, again.

A recent article in Forbes magazine focuses on Jacob’s Ladder Center, a “neurodevelopmental learning center” in Roswell, Georgia. Reading about this center, I’ve wondered what is different about its approach, and what might be the main components of an education for autistic children.

Amy O’Dell is the founder and director of Jacob’s Ladder, and also the mother of 14-year-old Jacob, who (according to the center’s webpage) exhibited “sensory play” and “self-stimulatory behaviors that are typical with an Autism diagnosis.” Jacob also had other health issues, including immune system disorders, kidney complications and a serious heart defect that required surgery in 2000. O’Dell used what she calls a “neurodeveopmental approach” to help her son’s brain “build and strengthen neural pathways”; she combined intensive sensory and gross-motor therapy. Jacob can now speak “eloquently,” likes physical activities such as wrestling and football, and can read far above his grade level. In 1999, she founded Jacob’s Ladder, which now provides therapy for 5 to 20 kids full-time, and another 40 part-time. An evaluation is $900. The fee for the school is $2,950 a month and its staff of 25 consists of “largely unlicensed aides trained by O’Dell.”

According to the Forbes article, Jacob’s Ladder Center is based on the theory that “the brain is, to a degree not appreciated by doctors a few decades ago, “plastic”; it can adapt to neurological deficits.” Research by Michael Merzenich, a UC, San Francisco professor, is cited. Other providers of educational therapies for autistic children have used similar arguments about the “plasticity” of the brain to make a case for early intervention. The neurologist of a student at Jacob’s Ladder notes that the center provides “repetitive behavior treatment with early intervention … a nice combination of other people’s views.”

I have not seen the center and am curious as to how its approach might differ from other educational methods and programs for autism. As I’ve noted, my own son has learned best using Applied Behavior Analysis (ABA), delivered with an emphasis on fun and flexibility and a lot of structure, and with a willingness among therapists to integrate ideas other therapies (speech; OT; Floortime-like techniques to develop play skills) and to consider my son’s sensory and communicative needs, and that look at him not as a diagnosis, or a label, but as……himself.

That’s been the right place to start with his education.