What is Success?
August 31, 2008 by Kristina Chew, PhD
Filed under Health
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!
Great post, I just addressed the same subject in my blog and you have made me rethink what I wrote a lot. I should probably look at what my son has done as a success instead of issues. Thanks for sharing.
Kristina,
I have seen the effects that intensive one on one therapy has on autistic children. It’s wonderful and my son, now 21 has benefitted from it. It does not cure our children, but it does make them better. This truly is a wonderful thing and I applaud these efforts.
How much better is mostly dependent on how high functioning they are. My son, David, was placed in the same program as, Nick, a low functioning autistic child. My son, a highly functional, though classically autistic, made progress socially and academically. There was no change in Nick. The success of ABA and other such programs is limited by the functionality of the autistic children. ABA and other behavioral training can only take our children so far. The next step necessarily must be medical.
The need to prove that vaccines are or are not the cause of autism is a barrier to this next step. Not because it steals resources. We should know if vaccines causes autism or like smoking makes it more likely and if so why. But because it blinds the medical community to associations that might help but can’t be looked at because they might link vaccines to autism.
The second impediment to the next step is that autism is a brain issue. Because it is a brain issue there is no way to penetrate the blood-brain barrier to treat it. That makes autism untreatable. The fault in this thinking is the assumption that autism originates in the brain. That is not necessarily so. The autistic brain may develop that way because that is what the genes instruct it to do. Or it may develop that way because because of the environment it is in. That environment is a result of what does or does not get through the blood brain barrier.
This is the reason that the MMR data (note I said data not what was concluded from them) is so important. The data showed that there was measles virus in the intestinal flora and in the spinal fluid. That can only happen if the blood brain and blood gut barriers are compromised in some way. The polarization in the vaccine debate prevents this thread and other such threads from being explored.
The idea that there is no epidemic supports the idea that autism is behind the blood brain barrier and will never be treatable. I don’t subscribe to that idea.
I know that you do not want to turn your blog into a vaccine site. But the next step has to be a medical one. It is not possible to discuss the next step without touching on subjects that can be linked to vaccines.
Pete has never had intensive behavioral therapy of any kind, so I cannot comment on ABA. I will say that his Adaptive PE classes have given him confidence and helped him with social skills and he enjoys PE very much! Seeing my son happy is success to me. Like Charlie, Pete is a fun guy to be around and I’m so proud of him. He is mainstreamed for math (he’s in 2nd grade now) and as long as that works for Pete, it works for me. I do not measure his success based on anything but progress at his own pace and that works just fine for us.
how will Effie do as an adult though? Autistics are not Peter Pans. Someday he will grow up and have to function in the adult world. As yet Lovaas and company have not reported on any adult outcomes in the peer reviewed literature.
I’d be very curious, too, to know what happens to Effie as an adult and the article notes that middle school and high school are the next challenges. Education has been the most important thing for Charlie, in the long run——yes, success based on Charlie’s own pace is the best and only way to measure it.
Political consultant David Marley, who is working with Medicare for Autism Now to seek funding from the Canadian government for intensive ABA, says this in the The Tyee:
“These children are the orphans of the health care system and we want medicare coverage to cover the costs of an effective scientific cure for autism.”
Words used a little carelessly.