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An Answer to Autism's $100,000 Question

| by Val

Researchers know that subsets within the autism spectrum population will react differently to behavioral treatments. There is no scientific data to support treatment mandate advocate's forecast with regard to reduced lifetime costs, or longer term (life long) benefit of very individualized ABA type therapies. Currently, too early to tell labeling might confuse some study outcome, all the while not really changing the fact that most study subjects retain autistic features.
 
The very underpinnings of ABA type intervention study can be represented as belonging to Lovaas. The earliest Lovaas' study into ABA type teaching has been questioned; the term recovery was used to describe children whose measured ability fell into the average range (upon initiation of programming) and (also to those) who were being educated within mainstream schools. Children with higher functioning autism could well achieve such outcomes via other interventions, and (furthermore) a follow-up of some of the recovered children at age 13 revealed a continuation of significant behavioral issues. (M.J. Conner Notes)
 
For the Lovaas' study, the term recovery was used based on measures that hadn't really improved, and long term follow up indicated continued significant behavioral features of autism. James Copeland points out that Lovaas' results have not - to this day - been replicated. If one were to learn from the full scope experience of the Lovaa's subjects - over the longer term, one would surmise that long term benefit of ABA type programming continues to allow for further scrutiny as far as an acutal conclusion for long term benefit.
 
Recent review of study done by Early Start Denver Model (ESDM) pointed out that ESDM's intervention did not eliminate signs of autism, and does not have the benefit of any long term follow-up of the children studied. From JAAPA: ...Intensive intervention, using the Early Start Denver Model, in children with autistic disorder or pervasive developmental disorder may improve early learning, especially language development, and adaptive behavior after 2 years of treatment. This study did not find a benefit of treatment on behavior and did not report on the long-term benefits, if any, of the intervention. Completion of study into earliest intervention from ESDM showed that 71% of children in a control group remained within the autism spectrum after programming,  and 56% of the children in the ESDM group remained. The biggest advantage in the programming studied, was that of improved language development and adaptive behavior. Scores on repetitive behavior showed no improvement for either group...Children as young as eighteen months were included in the study.
 
The problem with how treatment mandates are transpiring for those within the autism spectrum, is that too many with varying degrees of intellect and ability are being represented by the very same label. What works for one autism individual might actually be complete disaster for another. This is where frustration lies for parents of autism affected individuals, especially parents who have older affected individuals; these parents have seen a lot and can identify when the autism audience, especially the newly engaged families, are being presented with false information.
 
The autism conversation is about as complicated as it gets. No newly engaged autism affected family is going to understand all that is represented within the conversation; most are heading straight for whoever says CURE.
 
Right now the ABA type treatment mantra is presented as the closest thing to cure. Here is the problem.
 
Many will sensationalize autism, while maintaining only the most politically correct dialogue with regard to scientific findings. Oh, the meanderings within the autism opus when it comes our expert darlings, ones so recognized as infinitely informed; the ones who only allow their politically correct and many times political agenda!
 
So evident today is the emergence of true dilemma that presents within any atmosphere where - if one might be able to get something personally gratuitous from a hypothesis which must become fact, they are compelled toward the data that falls in complete favor of the hypothesis; the probability factor for motivation askew, increases. Perhaps the reality of such atmosphere is the biggest and best reason for opposing sides, or parties that do not always agree - for all of those who are looking into educational matters or medical matters, or anything that matters. Debate is healthy, but usually - the overwhelmingly politically correct media prohibits meaningful debate.
 
It seems that both autism research, and researchers themselves have been compromised because autism itself represents a not-for-profit, six-figure salary. Actually, many have for-profit businesses that profit from autism too. And, while many make financial lemonade by parsing out the facts of autism in favor of their monetary agenda; families who have recently identified autism in an affected loved one can be indoctrinated by the likes of any who say they have the closest thing to a cure. 
 
For the newly engaged parent who has just discovered that their child has a the condition called autism, a visit with any person who utters "closest thing to a cure" might represent their very first step backward; an indoctrination into self-serving and politically correct circles of the autism elite. These elite have found willing prey among many parents, newly engaged. At least as my family began the journey (Hello Dr. Wells) we identified that ABA type intervention wasn't even close to being a cure - it was just really one way of trying to teach. 
 
There is a great push for intense earliest intervention, and too early to tell autism labeling - as a cure (or only hope) for autism. However, a percentage of autism affected children are going to realize high functioning or even normal function; this has always been the case - with or without earliest intensive intervention. Those who are pushing for treatment mandates already know that, for a certain percentage of autism affected individuals, prognosis is favorable no matter the intervention. They also know that autism affected individuals, in which onset represents the regressive form of autism, will not respond with a result of best case scenario outcome in spite of the earliest intervention utilized. Even as treatment mandate advocates know such - it doesn't benefit their mantra to share the more complete picture.
 

Here is a breakdown of the percentages (link to source) :

Data from parental report on 2720 autism affected children found the following:
Regression (n=44%): A loss of previously acquired social, communication or cognitive skills prior to 36 months.
Plateau (n=17%): Display of only mild developmental delays until the child experiences a gradual to abrupt developmental halt that restricts further advancement of skills.
No Loss and No Plateau (n=39%): Di
splay of early warning signs of autism spectrum disorders without loss or plateau.

The above study... found children with early developmental warning signs may actually be at lower risk for poor outcomes than children with less delayed early development who experience a loss or plateau in skills. So the children in the No Loss / No Plateau group (39%) did not exclusively opt for intense interventions but experienced a good outcome in spite of interventions utilized. This would have been under criteria that did not utilized too early to tell labeling that current researchers embrace as a necessity for autism intervention. According to this above study's sample 61% will remain in the lifetime higher costs scenario due to the way in which onset of autism transpired, and earliest intervention will, in all likelihood, not be a contributory factor for reducing lifelong care expenses.

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While the above data is factual, many in autism elite circles do not present it and are given permission to present theory about earliest intervention cure (and too early to tell labeling) as scientific fact; a side effect to such fraudulent representation is that advocates are trying to legislate treatments as law. There are some who refer to the focus on mandating earliest treatments as cure (or at least a guarantee of long term betterment) - which is not proven.

The American Academy of Pediatrics recommendation for ABA type teaching writes that the method allows children to "...make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior - and their outcomes have been significantly better than those of children in control groups." (31-40) The problem with the AAP recommendation is that the above claims have yet to be validated by any hard data in the scientific community.

The result of looking through the sources provided in support of the representation that substantial and sustained gains are realized via intense earliest intervention -  is that the very cited experts themselves defy the AAP stated conclusion that... substantial, sustained gains... have even been realized from intense earliest intervention. The experts' own contributions in the cited papers, state that more research is required to settle what type of benefit earliest intense intervention provides over both the shorter and longer term. The one study (Lovaas) that might support the AAP conclusion in a small way - has yet to be replicated since the decades' old results.

Cited data provided for the treatment recommendation given by AAP finds lack of support for conclusive findings on intensive earliest autism intervention outcome:

31) A three year study in which involved no longer term follow up after initial gains. 32) No follow up after initial study.  33) After two years the behavioral group made gains as compared to the control group - but they were not significant. No long term follow up.  34) A comparison between intensity and type of programming. No long term follow up. 35) No long term follow up. 36) Outcomes to the initial study of this group are questioned. A follow when the study group subjects were older indicated that they had become worse. The term recovered was used to describe children whose measured ability fell into the average range (upon initiation of programming) and (also to those) who were being educated within mainstream schools. Children with higher functioning autism could well achieve such outcomes via other interventions, and (furthermore) a follow-up of some of the recovered children at age 13 revealed a continuation of significant behavioral issues. (link) This initial study group result has not been replicated - to this day. (link) 37) Hours of treatment for the study were the closest replication as far as intensity of hours utilized in UCLA study (Lovaas). While results were comparable, high hours of intense supervision were not sufficient to make up for low levels of pretreatment skills....Consistent with previous study, low IQ and absence of language predicts limited progress. All this is according to the researchers. 38) A number of investigators have reported that children with autism make major gains with early intervention. The present review included nine such reports on behavior analytic treatment (and other treatments)......Unfortunately, close inspection of these reports reveals that the results have been less favorable than reviewer have claimed (Dawson & Osterling)...Of great concern, is that most studies have lacked even the most basic features fo scientifically sound studies. ...11 of 12 studies did not provide data on childrens' progress following the termination of treatment, a crucial omission because initial acquisition of some skills does not guarantee continuation of betterment or long term benefit. 39) The study had no follow up. 40) Early learning rates  may predict outcome, but more research needs to be done... The answers may be gleaned from future research.
 
State by state treatment mandates might prove to be very anticlimactic for the majority of those affected by autism. The initial placebo effect wears off, and the prolonged hangover from costs have far reaching implications. I continue to question why those who advocate for treatment mandates do not come alongside public schools who are already endeavoring to reach and teach those within the autism spectrum; such a better fit for the purpose of including autism affected children in with society. Public school services have always been available to every child. As it stands now, the treatment mandates present the unintended consequence of disincentivizing schools with regard to including the more severely involved autism affected individuals.  This puts public service at disadvantage, and presents a probable scenario of disarray in programming.

 

Lorri Unumb of Autism Speak hopes treatment mandates of her chosing will become the law of the land as part of national health reform. "There is no controversy at all about whether ABA is the gold-standard treatment," says Unumb, a lawyer and senior policy adviser. "The only discussion is whether we can afford it."  However, many others in the Unumb quote source / article provide more complete information.

 

One Box Does Not Fit All In ABA & Autism has more info.