The Recovery Issue

An ongoing study involving children on the autism spectrum aged nine to 18 is finding that "the range for children recovering from autism is 10 percent to 20 percent." As reported in yesterday's Telegraph, University of Connecticut psychology professor Deborah Fein is studying the effects of intensive behavior therapy---Applied Behavior Analysis (ABA)---on children on the spectrum. The study is still in its preliminary stages and is funded by the NIMH:

Prof Fein warned however that even after lots of therapy, most autistic children remain autistic, adding that recovery was "not a realistic expectation for the majority of kids."

She dismissed critics who argue that the children were not really autistic to begin with, and added that the "recovered" children "are turning out very normal" on neuropsychological exams and verbal and nonverbal tests.

My own son has done ABA, intensively, from the time that he was just over two years old. We've found that ABA is a teaching method that suits his learning style. Over the past decade, we've seen ABA done very badly (with bad results on my son) and (as currently, and definitely when he was starting out and very young) very well. We've also some very exasperating interactions with ABA practitioners whose focus was on "recovering" Charlie and who, when they realized that he was not meeting his "recovery goals," suggested (implicitly and explicitly) that we seek services from someone else.

The Telegraph article closes with some statements from the National Autistic Society:

A spokeswoman for the National Autistic Society said: "Autism is a serious lifelong condition which can have a profound impact on people's lives. It is estimated to affect 1 in 100 people in the UK, that equates to over half a million. At present, there is no known cure although the right support at the right time can make an enormous difference and help people to progress and fulfil their potential. It is crucial that that support is in place.

"It is important to understand that autism is a spectrum condition which affects people in very different ways. Some people on the so called 'higher functioning' end of the spectrum, for example those with Asperger syndrome, may have their condition diagnosed later than the age described below and indeed we know of many people who were not diagnosed until their teens or adulthood. They also need understanding and support."

Thinking about recovery can make an autism diagnosis seem less "devastating" and more hopeful to parents who've just learned this about their child. That was the case for me when my son was little and Jim and I listened to many a therapist, biomedical practitioner, "autism professional" who touted recovery (and sessions and products). We've stuck with ABA over the years because, as much as we've liked it or not (and there have been times when I've said to myself, not another data sheet! yet another fading procedure to shape up that behavior.....), Charlie's learned the best with it. (I should also note that my son has been in a self-contained autism classroom or school for all of his education; had his educational trajectory led to him being mainstreamed with students his age, I can see that ABA would be too rigid, too structured, and something he'd not be happy about.)

I also think Charlie's done well because of the individuals doing the ABA; some of them are simply better than others. For Charlie, teachers and therapists who've taught him best know they have occasionally to forget about "the principles of ABA," to think about sensory dysfunction and processing, to think about what's happening developmentally to any kid at any age, to spend tons of time with Charlie to understand his non-verbal communication, think differently. They are why he likes school. ABA and behavioral therapy can easily be overly rigid and when they are, Charlie doesn't learn as well. As things are, Charlie seems relieved and more relaxed when in a carefully structured setting with numerous accommodations for his needs. And as I just wrote to one of his first ABA therapists, had it not been for his early foundation doing intense ABA, I'm not sure how he'd be doing now, and if he'd even be living with us.

One cheers alongside other parents whose children have been mainstreamed and may no longer need special education, while knowing that new challenges lie ahead. Lately, too, via my job, I've been contacted by parents who've noted their child had some combination of Asperger's/PDD-NOS/hyperlexia/learning disabilities; who may no longer have a diagnosis. The parent has emphasized to me that they think their child still needs certain supports to be successful in their studies (some are mentioned in Dora's previous post on taking exams). Referring back to the National Autistic Society's quote about ABA, a "cure," and some individuals being diagnosed on the autism spectrum later in life: "They also need understanding and support." And we should think hard and carefully about how best to offer "understanding and support" for each and every individual.