The above opinion does not question the immediate response to behavioral intervention in this one child - within several days of treatment, and then goes on to talk of how the boy is completely normal; it is an opinion that lost me at - after several days. Alongside the grand claims is the failure to mention differing results that are experienced by subsets within the spectrum. No accommodation is made for the majority of those in the autism spectrum who will not experience the same result. No next step advice for those in the majority who will not normalize.
Geraldine Dawson knows that subsets within the autism spectrum population will react differently to behavioral treatments. However, she continues to present non scientific data to support the forecasts that insist upon reduced lifetime costs, or long term benefit of her devised behavioral therapies. Even with the too early to tell labeling utilized in a study with which she was involved (which should have positively affected her outcome), the end result was that most of the subjects retained autistic features. More about that study later.
To engage in fiction: In order to motivate passage of insurance coverage laws Geraldine Dawson provides a non scientific forecast based on whatever area of thin air her numbers crunchers have pulled their figures from. She presents forecast as fact in her lobby efforts - but does not qualify the statement with the truth that the forecast is a forward looking statement that is not proven. See a bit of what she has to say in an op ed piece.
(Yeah, and I might save hundreds of dollars switching my auto insurance as well. At least for the first year that I sign with the new company.)
Dawson goes on in her written piece - and at least mentions that there is no cure for autism. However she alludes to behavioral treatments which can dramatically improve symptoms. All the while, the complete autism spectrum is not represented as far as the reality that differing subsets within the spectrum will react differently to intensive behavioral therapies.
(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%): Display 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. (The parents surveyed did not exclusively opt for intense interventions.) Therefore, for the Regression group singled out above, increased costs will remain as a certainty over a lifetime. The Plateau group lifetime costs cannot be determined. The No Loss and No Plateau group cannot be determined either. Isn't it grand that Dawson and others feel compelled to utilized too early to tell labeling in order to treat children with intensive therapy; children who were at low risk for poor outcome in the first place?
"With proper treatment, children can vastly increase language and communication skills and improve their quality of life", says Dawson. However, she fails to mention that services are already available to provide supports for communicative improvement, aside of intense behavioral intervention. She really fails to mention the above research.
Dawson refers to biomedical treatments in context of the behavioral treatments (as if she has found autism's cause), but does not support the statement to support the idea that she has found a neurological change from utilizing behavioral intervention. This is theory that she and many others have turned into fact with the snap of their fingers.
Oh to incite or motivate the populous in order to promote that which suits whose agenda? To create an emergency so that parents might panic. About:
- false findings,
- the mandate march,
- getting around peer review,
- autism intervention underpinnings,
- lying to parents,
- Dawson's intervention as the only hope,
- real issues in autism,
- what ABA is,
- AAP false conclusions.
False Findings: 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...A new claim about a research finding is more likely to be false than true." (link) In part, this is due to self serving data analysis.
The Mandate March: It 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 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 in 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.
Getting Around Peer Review Rules: The autism mandate lawyers have been so successful in their advocating - that some in the medical community have become a little too encouraged and even emboldened in presenting the not yet proven as already proven; in presenting an idea as fact - 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 vaccination science. I guess since the Wakefield cause was not a popular one within the peer review medical community - it is easier for his peers to insist that repercussions must be suffered for rules allegedly broken. Meanwhile those in those involved in the autism insurance mandates' state by state implementation, that are engaging in the same type of activity - allegedly engaged upon by Wakefield - are given a complete pass.
Autism Intervention History: 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' results 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 according to the follow up of 13 children.
ESDM did not find majority lifelong benefit of treatment on behavior: 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.
Parents Are Being Lied To: 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 was never lied to in like fashion, by those who had mentored me.
The Only Hope? 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, mostly by me.
Autism is not simply behavioral; if it were than the refrigerator mother theory might still stand: Within the autism spectrum, 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. Behavioral therapies insist on the volition arguement, that all is done on purpose.
Psychology meets neurology in the autism intervention discussion; both must 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.
Harm: 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 intensive behavioral type programs - do harm, of the psychological kind. For those with more complicated thought disorder, ABA like 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?). For the 61% of autism affected children who have higher risk of poor outcome - ABA type teaching might actually do harm.
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, overall thought disorder, 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.
Behavioral therapy dismisses onus of identifying medical cause: 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.
What is the anecdotal ABA, and is it specific or enumerable?: There exists no set formula or program that churns out a set result when utilizing ABA: It is an applied science of human behavior that must be uniquely applied for each autism affected individual. There is no set - or uniformly agreed upon procedure, practice or curriculum that defines it. As far as applied science of human behavior (Applied Behavior Analysis) that informs affective autism treatment, there remains many questions with regard to which procedures, practices and curricula fall under the ABA umbrella.
35) Lovaas OI (Behavioral treatment and normal education and intellectual functioning in young autistic children) J Consult Clin Psychol No long term follow up.
37) Sallows GO, Graupner TD, (Intensive behavioral treatment for children with autism; four- year outcome and predictors) Am J Ment Retar 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.
40) Weiss M. (Differential rates of skill acquisition and outcomes of early intensive behavioral intervention for autism) Behav Interv Early learning rates may predict outcome, but more research needs to be done... The answers may be gleaned from future research.
How much is true and how much is false in the autism insurance mandate debate; will the mandates really alter outcome in a positive way for the autism affected among us? Can a lie result in truth? What is the real benefit when communities are lied to. The mandate advocates may actually succeed in making things worse for our autism spectrum loved ones by insisting upon their lie and creating the thought of cure when none exists. The affected children will be kept out of view, and less of them will be serviced by the already in place public school mandate. This will result in less tolerance for those who cannot be normal after years of intensive treatment. Nobody will have learned to accept them because our society has begun to believe a normalization lie.