April 22, 2008

The Autism Market and ABA

New Jersey’s official position for children with autism is that it endorses Applied Behavior Analysis (ABA) as the magic bullet for improvement of the disorder. Local and state newspapers have recently printed features on the use of ABA throughout New Jersey’s autism community. In recent weeks there have been two major features in The New York Times about autism methodology and the families who use ABA. In the Education Life Supplement in the Times of April 20, 2008 there is yet another piece on ABA, this time about parents helping each other through better understanding of ABA. What is most interesting to me is that it appears that every major autism story on television and print media comes from New Jersey. And every story has inserted at some point, “ABA is the only therapy for the disorder with proven results in peer- reviewed research.” Not true. But something must be happening behind the scenes to create this hard sell on ABA. In does not take a giant leap to understand that since autism is a spectrum disorder, with a remarkable range and diversity of children, one method cannot meet the needs of all autistic children. And sad to say, I am now seeing more and more children labeled as autistic who are not.

I am not an autism expert. But I’ve worked with more autistic kids and their families over the years than many people who call themselves autism experts. I’ve seen the horrors of self-mutilation, feces smearing, parents who function as jailers in order to protect others from the child and the child from others. That range of the disorder is terrifying and, yes, sickening. Nothing can overstate the fear, the heartbreak and the exhaustion of trying to care for the child within the family constellation. I’ll never forget a local family in the early 90s I did a case for. The child was kept downstairs where the overwhelming smell of excrement made you gag. He loved the feel of it, its warmth, the fact that he could paint with it on the walls, smear it into corners, and squeeze it through his fingers. He had two siblings and parents who loved him. They were all prisoners in service to this wild child. ABA did not work. Nothing worked. Finally, the parents resorted to strong medication to essentially knock him out when he was at home. He was never placed residentially. My last autism case a year ago was a 19- year old boy in an ABA school and well-known research institute from age 3-19. It did nothing for him. He regressed catastrophically once he hit puberty. Of interest is that the director is a famous autism expert who is an editor of one of the famous “peer- reviewed” research journals. (I’d like to do a little peer review with her…) She consistently lied and misrepresented the child’s status to the family. While working with that family and that school I was told that no other methodology could be considered when using ABA. It was ABA or nothing. The child is now placed residentially.

ABA has a long history beginning with pigeon, dog, and rat research. Ultimately the principles learned were tried on people. Control the environment, find something that the person likes, require them to do/not do an activity, then reward them for compliance by giving them the thing they like. Without question it worked wonderfully with certain forms of autism, usually the more severe forms. During the mid 80s to mid 90s, I wrote pounds of IEPs for autistic children. The dilemma was that the local school left the IEP up to the private school to do. The private school simply implemented an ABA methodology without any individualized goals or objectives. I learned that autism schools, such as Eden, sell their ABA programs to other schools, so that these ABA programs are as generic as those for the local resource room. Home programs after school were a part of the accepted methodology in order to carry over the instruction and to train the parents. Sometimes the school paid. Usually they didn’t. And this was all before the recent autism epidemic- if there really is an epidemic.

Over time went to every private school for autism in New Jersey and a few in New York. The more I understood, the more uneasy I became. While the teaching looked individualized, with each child getting 1-1 with the ABA programs, I soon realized that it was not. The method was the same for every student. The only thing that changed was the scripted program and the level of the program. No child had an IEP as we know it. Instead there was a large booklet-looking document called an IEP that spelled out the ABA programs to be used, how many times the child was to do them to achieve mastery, and the reinforcers to be supplied. It was during this time that litigation exploded to distinguish between a method and a program. Parents could not demand ABA because it was a method- the sole province of the school to determine. They could only decide if the goals and objectives were appropriate. This was an important and positive distinction because it forced the parents and school to look at the child’s special needs without consideration as to how those needs would be met. What was interesting was the rigidity of the ABA schools and professionals in the writing of IEPs. They literally did not know how to individualize the child’s program independent of these scripted ABA lessons. So for years that was left up to me to do at the request of schools and parents.

Then a revelation happened. Twelve years ago I did a case for twin autistic brothers. Their mother was exceptionally skilled in meeting their needs, reading every piece of research she could get her hands on. The boys were in an ABA Preschool and the district wanted them to go into a self-contained ABA room for kindergarten. She learned that they had overwhelming sensory integration needs and that there was a growing body of research that showed why ABA did not work with many kinds of autism, particularly those with higher functioning levels. Both literally and figuratively she introduced me to Stanley Greenspan. That case lasted four years and provided the lens for me to better understand the problems between one methodology camp and the other. Greenspan was responsible for developing a method known as “Floortime”. This concept recognized the brain-based nature of the autistic disorder, having the child sit on the floor to engage in play-based interactions with the teacher or therapist. At various conferences I saw movies or debates between representative of ABA and Floortime, each pointing out the flaws in the other. The proof for me, however, was that the boys improved so dramatically with Floortime that I wanted to learn everything I could about it. I’m still learning. Other methods have come along that attempt to combine elements of both ABA and Floortime. But you don’t hear about them unless you ask. In spite of all of the research on sensory integration within the autism spectrum, it has never been mentioned in any of the recent ABA features. And no wonder. That wouldn’t be good for business.

Meeting the needs of children within the autism spectrum is a mega business. God only knows how many millions of dollars go into it each year. The selling of ABA as the only accepted methodology does a disservice to everybody- the parents, the child, the teachers. It’s an easy method to learn. We used to call that “teacher proof”. Floortime, however, is a very different matter. There is no formula. You learn to play with the child in a certain way, follow their lead, play so as to engage and foster self-regulation. It is much more difficult than ABA because it means you must know and understand both child development and the specific aspects of the individual child’s autistic behaviors. It takes more time. It is not teacher proof. Yet for many children it works a thousand times better than ABA. And there is just as much research to support this method as ABA. The ultimate point is that the business aspects of selling ABA overtakes any ethical concerns by keeping every other method as far away from parents as possible. Most never know that the palette of colors to paint their child’s education extends far beyond the first two letters of the alphabet.