The Recovery Issue
Published May 11, 2009 @ 12:31AM PT
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.
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Comments (9)
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Author
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Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.
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This is a great post with a lot of great things to discuss. It sure is important to remember that everyone develops but that the endpoint, and the trajectory getting there, may be different than what a parent may hope for or expect.
Only recently have our family members stopped scouring the net for kooky and magical treatments. They've finally, and thankfully, listened to us - we have a good plan grounded in science and conducted by caring professionals, we're pretty calm and happy, and things are progressing without magic.
Posted by Ken Wickiser on 05/11/2009 @ 04:08AM PT
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We had the horrendous ABA version. I find practitioners think they are SLP's and OT's when they are not and refuse to deal with the other issues or professionals.
The school system - ONT PPM 140 - uses ABA for behavioural issues, teaching style that can be used easily in either an integrated and PDD classroom. My eldest son has a token program and task boards and other tools from ABA and is mainstreamed. My youngest son uses the tokens, the task boards, the "break things down into smaller steps" and is integrated with full time support.
Unlike ABA practitioners PPM 140 also allows for the use of SLP's and OT's as part of the team. Without these people IMO ABA is doomed to failure. ABA should be a "team" therapy, not an individual one and it should be more of a relaxed, flexible therapy not a "well if he doesn't draw this line, just this way sitting here for 6hrs/day.... he's a failure" therapy.
ABA in most cases is too rigid and does not meet the needs of children. In Ont there are as many versions as their are practitioners and needs to be regulated and a proper program designed to meet the needs of all children... not those that fit their regimented "well we don't have a program for that"... that also allows for other professionals on the team, including parents.
My eldest will be one that is "recovered". I was offered a re-dx last Sept.... but since that means a loss of services and I need the OT - sensory/computer... we're waiting. I suspect it'll be mild NLD or LD when the paperwork is redone at Gr 8.
He'll be fine.
Little boy..... will always be "autistic".... but the gains... WOW!!!! Maybe he'll be able to tell those Aspies they "don't speak for him".... I hope so.
S.
Posted by Fw2 farmwifetwo on 05/11/2009 @ 04:23AM PT
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Great respond to an excellent post! It is great to hear the success of your oldest son. It is a testament to the hard work of both you and your kid. I did not know PPM 140 until reading your post and reading PPM 140 on various websites. It is an interesting name but seems like a great program for children on the spectrum. IMHO, all successful teaching programs have great support by the school district. All teaching staff in the program should receive intensive trainings before entering the classrooms and continued education through out the year. The ratio of teaching staff and student has to be appropriate so the program can be successful implemented. I have seen school districts on the paper used excellent teaching programs but in practice did not provide funding to hire staff and properly train them. The human factor is the important factor in any educational intervention equation. I understand why Dr. Chew and her husband had to move to a "better" school district. The district probably has not only a good teaching program for Charlie but also has the FUNDING to support it.
Posted by Hai Dang on 05/11/2009 @ 05:39AM PT
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What do they mean by recovery?
Posted by Shondolyn (Synesthesia) Gibson on 05/11/2009 @ 12:04PM PT
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@Kristina.
@Fw2 farmwifetwo
Rigid ABA.
I remember one respite case involving ABA. It was so rigid that everyone in the family had to live and breathe ABA 24 hours a day. Little cards scattered around the house. It was so hard on the sibling because he never got to play. The family was so stressed out.
I think whatever works for the child and family should be encouraged. But children need to have some kind of childhood too in order to feel normal. (This is just my opinion). Thinking about your priorities in life is important before deciding what you need to do to help your child. I didn't always think things through ahead of time.
Posted by L I on 05/11/2009 @ 11:51PM PT
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So far as I can ascertain after a diligent google search, Professor Deborah Fein is not "studying the effects of intensive behavior therapy---Applied Behavior Analysis (ABA)---on children on the spectrum." The written summary of the IMFAR presentation by Fein makes no mention whatsoever of ABA and Michelle Dawson who actually heard the oral presentation by Fein states that there was not mention whatsoever of ABA. Why did you write Fein "is studying the effects of intensive behavior therapy---Applied Behavior Analysis (ABA)---on children on the spectrum?"
Posted by Arthur Golden on 05/14/2009 @ 12:22PM PT
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MedicineNet and other reports on Deborah Fein's research note the use of ABA.
http://www.medicinenet.com/script/main/art.asp?articlekey=100210
Abstract from IMFAR for "Cognitive and Behavioral Profiles of Children Who Recover From Autism":
http://imfar.confex.com/imfar/2009/webprogram/Paper5228.html
Posted by Kristina Chew on 05/14/2009 @ 12:51PM PT
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Although the MedicineNet article did state:
"In her research, children who received a treatment known as applied behavioral analysis [ABA] and got it early seemed to be more likely to recover." and "Most of the children who recovered received early applied behavioral analysis treatment, an intensive program that aims to improve problem behaviors, Fein found."
Let me repeat that:
The written summary of the IMFAR presentation by Fein makes no mention whatsoever of ABA and Michelle Dawson who actually heard the oral presentation by Fein states that there was not mention whatsoever of ABA.
And let me repeat that in the study she presented at IMFAR:
Professor Deborah Fein is not "studying the effects of intensive behavior therapy---Applied Behavior Analysis (ABA)---on children on the spectrum."
Please note that your inaccurate summary of this study, even if you were somewhat misled by the media, is even more misleading than the media and did further mislead poor Harold Doherty into making even more inaccurate statements on his blog.
It does appear that Professor Fein in interviews with the media did mention the fact that most of the "recovered" children did receive ABA (the second quoted excerpt from MedicineNet), but I think it is well known that most children who receive an early diagnosis of ASD then go on to receive ABA So even if the same percentage recovers through the use of different types of therapy, of course most would have received ABA. In an ABC interview she did note that some of the recovered children did receive other types of therapy instead of ABA. I do not believe there is any basis for the first quoted excerpt from MedicineNet that ""In her research, children who received a treatment known as applied behavioral analysis and got it early seemed to be more likely to recover."
In my google search I found that Professor Fein gave a talk about 1-1/2 years ago in Ottawa Canada (home of one of the "recovered" children) about this same study and at that time she is quoted as stating:
'Even though Fein is an advocate of ABA, she believes there has to be something else that results in recovery. "It has to be factor X. Other children had programs equally good, and they made no other progress," she said.'
Please note that Professor Fein is receiving from NIH hundreds of thousands of dollars to study the up to 20% of children who recover. I wish someone would fund a study on the at least 20% (as noted in a recent peer-reviewed article from Yale University) of children with an autism diagnosis who later regress. I know from personal information that this group that later regress includes children receiving "good" ABA, such as my own son Ben at age 10-1/2 and much worse at age 13-1/2. I wonder what happened to the 17 year-old girl with autism who was allowed one year ago to bang her head on the concrete floor in five 10 minute sessions by a Board Certified Behavior Analyst at one of the country's largest psychiatric hospitals? Maybe there is a factor Y and sometimes children who had ABA programs equally good not only do not progress but end up much worse. I wish someone would blog on this aspect of ABA.
Arthur Golden
Posted by Arthur Golden on 05/20/2009 @ 12:33AM PT
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"'Even though Fein is an advocate of ABA, she believes there has to be something else that results in recovery"
It would be interesting to have two research studies involving an equal numbers of children who recovered and also an equal number who regressed to figure out if there is a way to identify other variables involved with autism.
Posted by L I on 05/22/2009 @ 08:30AM PT
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