Effie Linares is 11 years old like my son Charlie. Effie lives in Modesto, California and is mainstreamed in a fifth-grade class; today’s Modesto Bee reports on how far Effie’s come from the time he was 3 years old and started doing intensive ABA under the Lovaas Institute. At 5, at the suggestion of the founder of the institute, psychologist Dr. Ivar Lovaas, the BBC filmed Effie for a 2002 program. There’s a photo of Effie and three friends accompanying the Modesto Bee’s story, and it’s noted that he’s not only mainstreamed, but also “plays sports at church, is learning sign language through Lakewood’s Sign Club and sings in the school choir.” The Modesto Bee notes some reasons for Effie’s progress:

First, his level of autism is such that the program can work. Many autistic children have severe behavioral issues and cannot function in regular classes. Some exhibit “savant” characteristics that enable them to absorb information in one or two specific areas of interest.

The Modesto Bee makes an unsubstantiated statement that “savants often are susceptible to emotional outbursts that Effie hasn’t had in years”; I’m not sure that’s exactly the case. My own son started intensive ABA under the Lovaas agency in 1999, when he was 2 years old and after some months. He learned a lot and loved his therapists, whose warmth and interest in Charlie was an essential reason for his doing well. But Charlie was still not talking after several months and, when we moved to another city (St. Louis), the supervisor in essence suggested we find another ABA consultant. The supervisor was thinking (we suspected) that Charlie was not going to be one of those kids who might “recover“and be mainstreamed.

This experience left us at least a bit ambivalent. As I’ve noted, Charlie seems to learn best when taught in an ABA format. However, ABA’s a very imperfect “science” and behavior therapy and Lovaas’s work itself have a very troubled history, as noted in an old post by Autism Diva. We’ve come to listen to any claims of “recovery” with several ounces of salt.

At age 11, Charlie is in a self-contained 1:1 student: teacher ratio autism classroom. He’s not mainstreamed in any subject though he would probably be fine sitting in a classroom of same-aged students, with an aide (Effie Linares still receives some assistance in his school). Charlie’s academic skills are not at the same level as his same-aged peers and he’s learning more in his classroom via individualized teaching. And he’s a success, able to go anywhere we take him, liking school and learning and people, and a really fun kid all around.

Another article, in today’s Newsday (Long Island), describes Children’s Athletic Enrichment, a program for autistic kids aged 3-8 that teaches them baseball, swimming and soccer and seeks to use “sports to expand physical capabilities and life skills.” (Here’s a PDF file about Children’s Athletic Enrichment.) The program was founded by John Crawley, who has an autistic son, and (from what the Newsday article says) uses some creative methods to help autistic kids learn to play sports (hula hoops help kids learn to wait and also to run the bases).

One of the goals of Children’s Athletic Enrichment is to “learn sports skills while putting classroom lessons into real-life practice - with the hope that some of the children will one day graduate to so-called ‘typical’ sports programs”—-this is great and commendable.  It has to be noted, that just learning to play sports to the degree that a child can, be active, like learning and being in school and with people and in the world: This is success.

Wishing Effie and Charlie and everyone a very successful school year!

Laurie Duddy’s 8 year old twins, Tommy and Alex, both have severe autism. She—and a number of other parents of autistic children—are now studying for a master’s degree in Applied Behavior Analysis at Caldwell College in northern New Jersey. Today’s New York Times profiles the program and some of the parents who are studying in it:

In most states, a generic special education degree is sufficient to treat children with autism and to use the particular techniques of A.B.A., the only therapy for the disorder with proven results in peer-reviewed research. But many colleges and universities now offer specialized degrees in A.B.A. Graduate programs are offered at Northeastern University in Boston, Florida State University in Tallahassee, the University of North Carolina at Wilmington, the University of Maryland in Baltimore County and California State University in Los Angeles, to name a few. Administrators at several of the programs say they, too, have parents of autistic children among their students.

Caldwell’s graduate program is the only one of its kind in New Jersey, a state known for pioneering autism education and advocacy……..The state is thus a magnet for families from out of state looking for the best services for their children. Because of this migration, New Jersey has the highest incidence of autism in the United States: 1 in 94 children versus 1 in 150 nationwide, according to federal studies.

(Whether such a “migration” is the reason for New Jersey having the highest autism rate in the country is not clear; some other reasons include greater understanding and awareness and well-established early intervention programs.)

Most of the parents studying in Caldwell’s graduate program plan to continue to work as behavior therapists for autistic children and, especially, for older children and adults:

Martine Torriero, who has a 15-year-old son, hopes to run recreational and cultural programs for autistic teenagers. Delia O’Mahony, whose son is now 22, is interested in adult services, since children like hers “fall off a cliff” when they are past school age. Diana Kelly, who used all her skills as a lawyer to get her two sons properly diagnosed and treated — each has a different variation of autism spectrum disorder — does private consulting for families and schools as she works toward her master’s degree. She hopes Caldwell will add a doctoral program, too.

Until Charlie was five years old, I seriously considered becoming a professional autism teacher/therapist myself. I have learned a fair amount about ABA and different ways of teaching autistic students over the years and have found these more than helpful in teaching Charlie to take care of himself (tooth-brushing, for instance), to go out into the community (more on our visit to the Met later today), to help out around the house, and to play piano and cello. Parents learning how to be teachers of autistic students do bring something extra to the classroom:

By her own account, Ms. Kelly has tried just about everything, from A.B.A., which many families find harsh and robotic, to kinder and gentler programs with little data to support effectiveness, to special diets and detoxification. Each consumes time and money, Ms. Kelly said, telling her fellow students, as she does the parents she works with, that trying a little bit of everything is tempting but not necessarily wise.

“It’s not what looks good, it’s what works,” Ms. Kelly said. “And every hour spent doing X is time lost for Y.”

While I’ve found ABA to be very helpful for Charlie, I’ve also had a lot of questions and frustration about it over the years, and about the various ABA consultants and therapists that we’ve had (I’ve recounted Charlie’s ABA education and some of the criticisms of ABA here). As Charlie has entered puberty and now that he’s taller and stronger than me, some behavioral techniques have proved very useful when he has gotten anxious to the point of becoming aggressive. I can no longer use any kind of physical methods to help Charlie through a difficult moment.

Parents who’ve been there and done that can help to make autism education better, more effective, and always humane. And, I’ve also learned a tremendous lot by listening closely to the experiences of autistic adults such as some of the speakers at the April 10th Artistic Spectrum reading, including Cliff Schumacher (you can read his presentation here) and Amy Gravino (who is a student in the Caldwell program).