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In general, many seem easily sold on the idea that Autism's Applied Behavioral Analysis (ABA) types of programming will allow for eventual lifetime savings, and the almost cure.
ABA types of treatment have not resulted in lifetime costs savings for ongoing care of autism affected individuals, over many decades of programming. So, even with a decades' long head start toward the long-term savings goal, we are not anywhere near one hundred million gazillion fafillion dollars. We are actually in a deficit.
ABA types of treatment are being propagated as medically necessary treatments. However, ABA models that have been historically utilized are not supported as medical treatments. A preponderance of data provides for the fact that ABA treatment models do not hold up, from an evidential standpoint, if the professed outcome is that of long-term savings over the lifetime of an autism affected individual.
Some peer review has actually ignored the evidence of ABA type programming outcomes, instead of looking at complete facts.
Evidence from differing types of ABA programs tells a poignant tale. One that does not involve cost savings over a lifetime, or the almost cure. Anemic information sharing, and the parsing of autism facts, have created a propaganda atmosphere. Development of coherent strategies, by families of autism affected individuals, becomes impossible when even the most respected of professionals tout falsehoods. Families cannot cope in a realistic fashion if, during the beginning stages of a very challenging situation, they are lied to by the very professionals who they need to count on for candid and complete information.
Peer review guidelines have been circumvented when it comes to the subject of autism. In an increasing fashion parents of the newly diagnosed are being told that ABA is an empirical, evidence based method; in the context of a theoretic conclusion of lifetime cost savings. Parents, newly engaged in the autism foray, are told that all will be lost if ABA is not utilized. This overreaching mantra has really taken hold in states where autism insurance mandates have occurred.
ABA types of therapy will actually increase costs of caring for an autism affected loved one over their lifetime. This is because the majority who have been involved in ABA types of programming do not experience a long-term outcome of an ability to participate in the ultimate least restrictive environment; that of the typical independent lifestyle.
ABA lacks identification as a set program or method with regard to which procedures, practices and curricula are utilized. Components within an ABA type programming might involve components of evidence based therapy, but even with some of those therapies arguments remain with regard to the necessary intensity and frequency required for benefit.
As of right now, ABA continues to simply be a complimentary and alternative treatment - in the strictest sense. Complimentary and alternative methods (CAM) are not considered medically approved. Basically, if there is not significant data to support the method, it does not become medically approved. CAMs are generally methods that have anecdotal findings that need to be pursued.
What of the research endeavors engaged upon in order to determine long-term benefit from an autism affected child's initial participation in earliest intervention, coined as ABA?
Follow-up seems to be the sticking point when it comes to verification of long-term savings. Findings have countered the theory of long-term outcome improvement, with regard to lifetime care needs and overall function, from an earliest intervention program.
"...There have been at least ten long-term follow-up studies of persons with ASD, going back nearly 40 years and totaling over 1000 subjects, that bear out this fact. In 1976, one researcher correctly concluded 'In terms of scholastic progress, social competence, and work opportunities, the child's IQ level is as influential as the presence of autism." (Copeland, Bartak and Rutter)
The Journal of the American Academy of Physicians Assistants (JAAPA) weighed in on the question of long-term benefit from ABA type programming engaged upon in the often referenced Early Start Denver Model (ESDM). JAAPA reviewed results from ESDM and stated that the recent program "...did not find a benefit of treatment on behavior and did not report on the long-term benefits, if any, of the intervention."
The American Academy of Pediatrics (AAP) gave an empirical stamp of approval to ABA types of interventions, even as much of the AAP sourced data utilized to support the approval shows that nothing is proven with regard to earliest intensive treatments for autism, and how they factor in long-term.
In strange kind of information flip flop, the AAP writes that the ABA 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." And then, the AAP cited sources for supporting the statement - flop the AAP statement. While the below is not a verbatim example of each piece of information from the sources, the sourced experts overwhelmingly concluded similarly.
One study found that after two years the behavioral group made gains as compared to the control group - but they were not significant; no long-term follow-up.In another study outcomes to an initial study were questioned. This is because follow-up engaged upon when group subjects were older indicated that they had become worse. Also, the term "recovered" was used to describe children whose IQ fell into the average range upon the very start of programming; and to children who were already mainstreamed in public schools. The "recovered" children, at age 13, revealed a continuation of significant behavioral issues.
Yet another study concluded that..."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".
Another group found that..."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 reviewers have claimed." (Dawson, Osterling) "...Of great concern, is that most studies have lacked even the most basic features of 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."
What exactly are the reasons for the AAP's empirical stamp of approval for a method that does not even enjoy clear definition as to what it exactly is? ABA lacks identification as a set program or method with regard to which procedures, practices and curricula are utilized. The numerous instances when outcome from various ABA types of programs have been research, have not provided data that supports even an evidenced based statement
"Predicting improvements in social-communication symptoms of autism spectrum disorders using retrospective treatment data" is a very recent look into earliest interventions. IQ as predictor of long-term outcome seemed to be a focal point of the research results. Results seemed to indicate that an initial higher IQ upon identification of autism "...may allow children to make greater gains." Important variables were identified when IQ is "...assumed to be a surrogate for innate or inherent brain function". There was outcome consistency with regard to the IQ of those with immutable brain damage or dysfunction. In other words, you kind of know what you are going to get from programming, based on the initial symptoms and IQ measures.
"Predicting improvements..." still had questions upon completion of the project. Factors with regard to type of treatment, or intensity in treatment could not be clearly defined with regards to how treatment type or treatment frequency might have contributed to improvement. The study's results mention a need for researching alternative treatment approaches for individuals within the autism spectrum who have intellectual impairment. One would not know this by reading overall media reporting on this particular study.
Even as the above findings transpired, media reporting about "Predicting Improvements..." predominantly expressed that intense early intervention is the only hope for the entire autism spectrum. In one report, the reader is told that:
"It's important for children with autism to begin treatment as soon as possible." And "The more intense or comprehensive the therapy, the better it is in terms of helping children improve social and communication skills." (*Micah Mazurek, assistant professor in the School of Health Professions and the Thompson Center for Autism and Neurodevelopmental Disorders, Children with autism benefit from early, intensive therapy, ScienceDaily).
When people read such they generally do not think about how complex the autism spectrum issue is. And then there comes along an Autism Speaks representative who, during the same reporting cycle, represents that:
"...ABA provides a level of early intervention for children diagnosed with autism that starts before they enter school and that has been scientifically proven to improve their functioning and help them achieve independence in the future. In the process, the need down the road for taxpayer-funded special education and social services declines." (Health insurers want taxpayers to pick up the tab for autism care, Capitol Weekly)
Media snippets with brief encounters about the autism challenge that are intended to inform, often times misguide.
If media reporting gave way to earnest contextual offerings, more individuals would find that there is simply no lack of information with regard to long-term results from initial treatment endeavors.
In what follows, one can identify the reasons for "Predicting Improvements...' " keen focus upon IQ. While everyone continues to try and help the autism affected individual with whatever programming is utilized, it seems important to have some idea of limitations that might present down the road. Limitations that may be predictable according to initial autism onset patterns and IQ measure.
A Kennedy Krieger Study surveyed 2,720 parents. Through custom questionnaires and standardized rating scales, researchers examined differences in early milestone achievement, autism symptom severity and diagnosis, and educational supports between children with three different patterns of autism symptom onset. The results showed that:
"...when and how autism symptoms appear in the first three years of life has vital implications to a child's developmental, diagnostic, and educational outcomes."
The Kennedy Krieger 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.
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%):Display of early warning signs of autism spectrum disorders without loss or plateau. (Kennedy Krieger)
"This study was also one of the first to examine the implications of developmental plateau, which tended to occur around the child's second birthday. When compared to children with No Loss and No Plateau, these children were more likely to need educational supports and receive an autistic disorder diagnosis, which is typically more severe than other diagnoses on the autism spectrum (i.e., Asperger's syndrome or Pervasive Developmental Disorder - Not Otherwise Specified). Children with No Loss and No Plateau were at the least risk for poor outcomes." (IAN Community)
The above indicates that, for 39% of those within the autism spectrum, who displayed earliest warning signs (No Loss, No Plateau group), intervention does not have to be specific in order to experience best case scenario outcome over that groups' lifetime. No specific intervention was utilized by the 2,720 families that were surveyed.
In toto, over a third in the spectrum will have best case scenario outcome regardless of interventions utilized, the remaining will most likely need significant special helps throughout their lifetime. The "normalization, cost savings, sometimes cure" mantra engaged upon by some who lack true rigors, might actually result in punitive outcome for the more severely challenged autism affected, due to resources being diverted from their long-term needs.
The overreaching conclusions about what intense, earliest intervention therapy can provide will result in less tolerance for those who cannot become more normal after years of mostly privatized intensive treatment. The public schools that had been growing in the ability to service all in the spectrum, will have stopped servicing the more challenging cases due to the special interests that have insisted upon legislating a treatment, and packaging it as only doable in private practice; an untruth.
Thanks to rigor-less peer review, there might even ensue a stigmatization of parents who opt for a different approach than ABA programming.
Is it possible that acceptance for the more diverse in the autism crowd will diminish because our society has begun to believe a cost effective, almost cure mantra that is continuously chanted, and legislated? Growing cost fatigue might likely transpire because of excessive funding that is increasingly diverted toward the very early services via mandates and taxes. When the children who remain severely challenged reach adulthood and need funding for services that allow for grace and space, a way to be a comfortable part of our society in spite of being different - the funding well will have been dried up by the ABA programs that have not really resulted in less long-term care needs.
I have perceived a growing sentiment against autism spectrum needs, as I have followed reporting on the state by state autism insurance state mandates.
Another thing that transpires when so much emphasis is placed on Applied Behavioral Analysis types of treatments, is a discrimination of sorts against the autism affected child.
Autism is not simply behavioral, if it were than the refrigerator mother theory might still stand. It is difficult to draw a defining line between that which is strictly a volitional (behavioral) concern and that which is a neurological (medical) concern. Too many times all exhibited features of autism have been thought to be done by volition - the affected individual doing such on purpose. Behavioral therapies insist on the volition argument, that all is done on purpose.
Psychology and neurology must both be considered in order to identify the most meaningful interventions. As neurological findings for autism affected individuals begin to help us understand why affected individuals manifest the autistic features that they do - we might have little reason to interpret the exhibited behaviors (classic features) as strictly social, or done by conscious choice. The behaviors are not strictly a psychological concern of volition - that can be completely extinguished via behavioral therapy.
"Rethinking Autism: Implications of Sensory and Movement Differences" points out that "A neurological view of symptoms possibly affecting autistic individuals will help us to understand further the nature of differences experienced by these individuals. While the psychological impact is very real as experienced first-hand by participants in such interactions, it is useful to suspend social interpretations of the symptoms so as not to mistakenly ascribe intent and volition to individuals whose behavior may be contrary to what really is intended to be communicated." (Donnellan, Hill, Leary) "Rethinking Autism..." also points out how neurologists have dismissed neurological symptoms displayed by those who have been given the autism label, while considering the same neurological symptoms a medical concern for those who are not affected by autism.
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*As an aside: Mazurek's statement is supported. Early speech therapy can help to mitigate some of the communicative deficits. It did for my own daughter. We even saw initial improvement from earliest intervention. There was regression after that programming. After a couple years of sustained regression I wanted to test the immovable plateau. We started another ABA type of program. I felt I wasn't being a good mother if I handled her autism condition in any other way; I felt I was failing her if I did not continue to push her to learn. In the backdrop of those regressive years, I attempted to have medical persons identify any sort of condition that might explain my daughter plateau and or regression. I did not perceive that she had medical concerns of psychosis, because I was so intent on behavioral types of therapy. There came a particular night when I absolutely knew how wrong the excessive emphasis on behavioral intervention had become. That was the night that I had to admit my daughter to a psychiatric ward for schizophrenic symptoms. Please know that she is doing good now, in the presence of supportive family, for long-term care.
Valerie chronicled events with regard to her family's experiences surrounding autism that turned to schizophrenic like psychosis, over a sixteen year period. In "Hello, Dr. Wells" Valerie offers a diverse sample of information via the inclusion of surveys, assessment reports, journal entries, medication evaluations, educational reports and medical reports. These are woven throughout a poignant and sometimes heart wrenching account. Upon Sarah's autism diagnoses at three years of age, Valerie was moved to constantly observe the challenges and remember everything about them. As years passed and complications from worsening autism ensued, observations and memories were written down for the sake of remembrance. Valerie lends poignancy, clarity, tenderness and humor, while also giving useful and realistic glimpses of what autism actually means for many families, educators, and medical professionals.
"Hello, Dr. Wells" is available on the web at no cost. Just Google it.
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