After calculating results from published peer reviewed findings, an epidemiologist concludes that... "There is an increasing concern that in modern research, false findings may be the majority or even the vast majority of published research claims" Addtionally, "A new claim about a research finding is more likely to be false than true." (link) In part, this is said to be due to self serving data analysis.
The autism insurance mandate issue is a big issue that points out how the claims cited above are part of a real life reality.
A little about mandating non-proven treatments, based on false evidence or conclusion - where autism is concerned. How are families and communities affected? And when have experts crossed the line?
In Virgina, a contractor points out how an autism insurance mandate is simply one more mandate - that his small business cannot afford; While the rules of his state's mandate would apply to his small business, the larger businesses in Virginia (self-insured) remain exempt from the letter of the autism mandate law. Meanwhile, in Missouri, a mother decries the autism insurance mandate already on the books in her state; once the mandate was in place she called her insurance company in order to begin coverage - and found it would only cost her an additional $3000.00 premium per month.
What function will the state by state implemented autism insurance mandates really perform? When every mandate is set into law and implemented - are families simply finding themselves back where they started in the first place. All the while, politicians and lobbiest pat themselved on the back for job well done - a law well passed.
The mandate march began years ago; compliments of lawyers who can get away with presenting not yet proven data, or the theoretically compelling - to lawmakers in order to force payment via legislation, for that which is not yet medically verifiable. The lawyers do, via legislatures, what is not supposed to be allowed in peer reviewed science. The lawyers engage, and sometimes outright incite, the populous via sympathy and empathy; all the while providing a very grand dose of misinformation as far as what is actually proven science. The lawyers make true in lobbying efforts what is still false in medicine. Within the medical community professionals actually suffer repercussions for making false statements with regard to - presenting the anecdotal as something that has recognized consensus via peer review.
The autism mandate lawyers (and they know who they are, and how cleverly they have gotten around the peer review rules) have been so successful in their advocating - so much so that the medical community has become a little too encouraged and even emboldened in presenting the not yet proven as already proven; in presenting an idea as fact. They say that earliest intense intervention will change the neurology of autism and therefore result in reduced lifelong costs. Those who proclaimed this most modern version of snake oil, might want to consider the peer review rules that are being applied to Andrew Wakefield. I guess since the anit-vax cause was not a popular one within the peer review medical community - it is easier to insist that repercussions must be suffered for rules allegedly broken when it involves an anti-vaxer. Meanwhile those in those involved in autism insurance mandates' state by state implementation, that are engaging in the same type of self serving activity - allegedly engaged upon by Wakefield - are given a complete pass.
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 Lovaas' study results are questioned because 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) To this day, the Lovaa's study has not been replicated as far as initially proposed success. 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' proposed results (while questioned) have not - to this day - been replicated.
At least with the Lovaas' group, one has a clear view that the long term benefit from initial endeavors into intense behavioral treatment are questionable.
A more recent look into intensive treatment for the autism affected child was engaged upon; findings indicated short term benefit of improved communicative skills, still not within normal range - autistic features remaining. The irony of this finding is that nobody in peer review circles have considered that the improvement might simply be due to teaching all involved with the affected individual - methods for communications and interaction. I know of the this, because my own daughter was better able to communicate after her intense earliest intervention program, but only because she was provided with methods; methods in which those who worked with her also had to be involved; methods that the general public would not engage upon. When the methods were not utilized, she was not able to comprehend and or utilize her skills in communication. She once again seemed mute and unable to comprehend.
The 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 challenge for those in peer review circles is to take apart the ESDM study and consider the too early to tell labeling that is being utilized in order to engage in study of earliest autism intervention. While research continues with regard to how early we might be able to identify the onset of autism, the issue has not been settled as a matter of thoughtful, longer term, peer review. I also challenge the ESDM determinations about their study subjects' outcome and if they remained within the spectrum of autism, especially given the lack of long term follow-up and the ebb and flow that is involved in the autism journey - for a portion of those who are autistic, there are periods where they will do quite well, but then regress back into full blown autistic features.
It is enough that the families just beginning in the autism journey need to consider how to best deal with their situation, but the autism elite have seemed to make a conscious choice to do what is against the rules within peer review standards; and even possibly encourage lawyers to further a mandate agenda that is really so intent because of what the autism elite will get out of the legal victories. It is one thing to tell a parent that there are all kinds of methods for attempting to improve outcome. It is another thing entirely to present false hope, to create emergency, and to imply that if earliest intervention is not engaged upon, all is lost. I am here to tell any parent reading, you are being lied to by the autism elite.
I have been where the newly engaged parents are right now, fighting tooth and nail for my affected child's recovery. I have fought with the school district so that all might be trained in particular methods of intensive autism intervention strategies, simply because I had seen what was felt to be initial good response to the intense treatments. I have also experienced the pain of consequent worsening that remains a part of the ebb and flow of autism for many - no matter the initial endeavors of intervention. In reflecting upon my daughter's response to various treatments throughout the years I was able to identify that some of the ways in which our programming was applied of might have contributed to worsening thought disorder for her - simply because I insisted upon staying the course of interventions that initially worked and were emphasized as the only possible hope.
Within the autism spectrum, psychology meets neurology; therefore the autism spectrum label confuses. It is difficult to draw a defining line between that which is strictly a psychological (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.
The zigzag between psychology and neurology factor in to the autism intervention discussion, and also into identification of the most efficacious 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.
When one considers the possibility that a child has not particularly chosen to engage in stimulatory behavior or some other autistic feature, it allows for the idea that some methods that have been utilized historically in various ABA type programs - do harm, of the psychological kind. For those with more complicated thought disorder, ABA behavioral interventions might even contribute to behavioral problems due to the autistics' many times reported - atypical use of memory and thought; especially related to highly charged experiences (easily acquired PTSD?).
Just because we prompt a child with the hands down - or quiet voice command during a discrete trial (utilized in some intensive behavioral treatments), it doesn't necessarily mean that compliance by the child is easily applied. Many times, more stress is being given to a child who may or may not be able to control the behavior - according to many factors that might present to do with an unidentified neurological condition, situation and environment, and even time of year. Many associative things to do with situations, environment and time of year - can exacerbate already existing neurological conditions of medical origin.
Consider some of the conditions that are expressed in neurology as medical, and therefore given careful consideration with regard to possible treatment: motor problems, sensory problems, inertia, apraxia, dyspraxia, echoalia, mutism, behavior disorder, catatonia and clumsiness. These have also been observed in autism. A neurologist might never say that the aforementioned listed physical symptoms are engaged upon by choice of the non autism affected patient...and might never insist that an intervention must be solely comprised of behavioral therapy in their case. On the other hand, a neurologist many times might ignore the symptoms if a patient seeking help has already received the autism label. Throughout my daughter's lifetime, and her experiences in the ebb and flow of autism over almost eighteen years - I have seen the dismissal of her symptoms due to her already present autism label; one she received at three years of age.
From Rethinking Autism: 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.
In my own experiences with intense earliest intervention and the ebb and flow of autism, what remains? When all has been said and done thus far - for my daughter (now 18 yrs-old), is the fact that she has understood life all along in sometimes vastly different terms. She is different, but she is worthy of the same grace that we all require on a day to day basis. Alongside our failure to normalize her by rewiring her brain via intensive therapies, we have understood the implications behind true humanity in its most extreme sense. I can only hope that families in general will be able to grasp the grace and display the extreme humanity many times required in the autism journey - when the various temporary hopes that are being presented to them right now by many experts might eventually be revealed as what they are...ideas and theories that have good intentions but do not quite pan out, once the scraps of reality begin to present in real life.