Monday, January 2, 2012

Autism's Applied Behavioral Analysis Is Not Always What It Appears To Be

Is Applied Behavioral Analysis (ABA) the almost-cure for children affected by autism?

Many states have mandated insurance coverage for autism treatments - with the ABA brand as the focus, alongside a theorized long-term savings over the lifetime of every autism affected person who participates in the intense intervention.

When one reads that ABA is effective what is rarely mentioned is the fact that there is no set program from which it is defined. It is comprised of differing teaching methods and therapies - and when put together - the sum total of these are represented to be an ABA type of approach.

The intense form of ABA has not been completely validated by the scientific community. Even so, media reports usually include a pretty strong validation statement when informing on autism intervention issues. The statement will always sound something like:

ABA therapy is known to be extremely effective in treating children with autism if given at an early stage of development. It is scientifically validated and includes positive reinforcements and individual goal setting, to achieve dramatic behavior modification. ABA therapy allows children with autism the opportunity to reach maximum potential and the hope of becoming independent.

The problem with such a statement is that ABA therapy has not been proven to allow children to reach maximum potential as far as becoming independent. Most usually require lifelong care in spite of earliest involvement in ABA types of programming.

Ongoing study of recent - and historical - ABA treatment models shows that the initial slight gains from earliest intervention for many autism affected children reach a point of plateau. And this is because - so far - the majority within the spectrum do not have the learning curve that allows for development at the same rate as typical peers. This does not mean that the affected children will never learn - and for many it simply means that the pace at which they make gains is going to look different from their typical peer.

From media reporting and organizational advocacy, a rush to judgment ABA environment has been created since many engage upon the "intense teaching now, save later" argument. By insisting that ABA can do what it cannot do, some experts have put care professionals and school teachers in a difficult position. By wrongfully asserting that ABA can significantly normalize a child or change the neurology behind every case of autism - some experts have created an overall acceptance problem that in turn creates future deficits with regard to planning for suitable integrations and placements.

Most recently the New York Times provided an excellent series of articles on the subject of autism. One of the pieces pens that experts do not know why some autism affected children do not respond to therapy. This is not really accurate. Experts do know why; it has to do with autism onset patterns and IQ upon initiation of programming. Perhaps the experts do not want to explore the issue of onset and IQ with media - because they feel that it might rob hope. Or, maybe the experts do not mind pointing it out and the media just has a hard time reporting such.

The autism term encompasses a vast array of affected individuals who have experienced differing onset patterns. The way in which autism develops gives clues as to future outcome. The onset pattern when coupled with initial IQ gives crucial insight.

Higher IQ upon initiation of programming is found to allow children to make greater gains. And outcome consistency is found with regard to the relation between IQ and performance of those with immutable brain damage or dysfunction. (Mazurek) Said another way, children who initially present with the same degree of autistic features - but with one having an IQ average of 100, and the other 40 to 55 - the autism features shrink for the child with the higher IQ, but not for the child with lower IQ. (Copeland)

IQ upon initiation of therapy was focused upon early in the development of ABA types of programming - even by the trend setting Lovaas'. He seemed to opt for involvement of children who had higher IQ measures with regard to initiation of his first study. After completion of that study he deemed that his programming had recovered the children from autism. Alongside Lovaas' proposed recovery experts tried to point out that those children with higher measures of IQ would have been able to achieve such outcomes via other interventions. Also, follow-up of some of Lovaas' recovered children - at age 13 - revealed a continuation of significant behavioral issues. (Conner)

With regard to how developmental gains apply for the overall autism spectrum, after involvement with intense early instruction - Outcome of early intervention for children with autism (Smith) informs on a number of reports of children with autism making major gains with early intervention. Nine of the reports on behavior analytic treatment that she researched had less favorable results than claimed by reviewers (Dawson, Osterling). Most of the studies lacked the most basic features of sound study. All but one of twelve studies lacked data on children's progress following the termination of treatment; and this was proposed to be a crucial omission because initial acquisition of some skills does not guarantee continuation of betterment or long-term benefit - according to the author.

More recently, Evidence-Based Comprehensive Treatments for Early Autism acknowledges that:

Reports of dramatic changes and excellent outcome have only been reported in a few studies. Experts are still very early in the process of determining what kinds of interventions are most efficacious - both over the short-term and the long-term. Caution is recommended with regard to evaluating comprehensive autism treatments as a whole package (branding); this is because branding does not allow for scientific conclusion with regard to which element of the package was responsible for the change. Branding is proposed to possibly cause economic difficulties for society. Branding's consequence is that a high number of intervention providers are not adequately equip to provide quality treatment. Meanwhile, other quality treatments that are lest costly and more readily available are ignored, due to favor for the branded treatment. Currently, there is no evidence that ABA types of treatment lead to recovery - and this written after consideration was given to the most empirically designed study models. (Rogers, Vismara)

Autism, no matter how it is intervened upon represents hope in stages. Hope can prevail in spite of the fact that autism holds significant challenge.

The personal hope I experienced while persevering too strongly upon behavioral interventions for my own daughter was simply hope in a tunnel. However, when I was broken by too complete a focus upon how to deal with her development - I began to see purpose no matter her presentation. And thus began hope on my horizon. It has never left. My daughter operates a little differently and we cannot really test her IQ or tap completely into her intelligence. Even so, she enlightens me and my family every year by displaying gains that show us she is as much like us as she is different from us.

*****

About our journey with autism... At the very beginning I figured, no big deal, we'll get our daughter normalized in no time and pretty soon she would be asking for the car keys. It didn't quite work out that way and as my entire family and I continued to work through the ebb and flow of her unique walk, we fell madly in love with her in all her glory. For a real life look at one case of severe autism, just Google "Hello, Dr. Wells". It is a sixteen year account of autism that turned to schizophrenic like psychosis.

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