Autism "Gets Better": In WV one doctor writes of behavioral intervention as a "get better" cure for autism. His written opinion provides just one example of how doctors and researchers continue to engage in non professional behavior when it comes to autism spectrum disorders; and to what extent intensive behavioral treatments actually determine overall lifetime prognosis - with respect to both the immediate response the the therapy, and over the long term. From his opinion...
You may have read that children with autism spectrum disorder do not "get better." Thank God, that is not true. I know a family whose child was diagnosed at age 3. The boy could not speak or follow basic directions. He could not kick a ball or pedal a tricycle. His parents thought they would never interact with their son. But because the family could afford it, they hired one of the world's top autism specialists, flew him to West Virginia, and had him work one-on-one with their son for several days. (from the doctor source)
The doctor does not question the immediate and dramatic benefit of behavioral intervention in this one child - within several days of treatment, and then goes on to talk of how the boy is completely normal. He lost me at after several days... The doctor fails to mention differing results that are experienced by subsets within the spectrum. Addtionally, he makes no accomodation for those in the autism spectrum who will not experience the same result; and those would be in the majority according to most current research. He offers no next step advice for those in the majority who will not normalize.
One important researcher knows that subsets within the autism spectrum population will react differently to behavioral treatments. She knows there is no scientific data to support the forecasts that she presents with regard to reduced lifetime costs, or long term benefit of her devised therapies. I am hoping that she is aware that the too early to tell labeling utilized in a study with which she was involved skewed the results of her study. In that study, the end result was that most of the subjects retained autistic features. More about that study later.
Currently Geraldine Dawson is engaging 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 a lot of fiction as fact in her lobby efforts.
Washington has about 12,000 children who have been diagnosed with autism, and the potential cost of untreated autism to taxpayers is considerable. It's estimated that early diagnosis and intervention that are covered by insurance could save the state billions in lifetime costs for the current population of children with autism. (link)
Geraldine Dawson goes on to mention that there is no cure for autism. She mentions studies show that behavioral treatments can dramatically improve symptoms. I think we can all agree that any improvement is welcomed and dramatic for families who walk the journey - and these kinds of improvements happen with and without involvement in such therapies. 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.
"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 availble to provide supports for communicative improvement, aside of intense behavioral intervention.
Oh to incite or motivate the populous in order to promote that which suits whose agenda? Oh 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 medical issues in autism,
- what ABA is,
- AAP false finding.
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," Dr. Ioannidis said. "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, 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.
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 Andrew Wakefield. I guess since Wakefield's anit-vax cause was not a popular one within the peer review medical community - it is easier for 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 Intevention 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.
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.
How is it that fallacy is being utilized to promote therapy as cure?
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 would still stand: 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. Behavioral therapies insist on the volition arguement, that all is done on purpose.
There is a zigzag between psychology and neurology that factors in to the autism intervention discussion, and also into identification of 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?).
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.
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 anecdoctal ABA, and is it specific or enumerable?: There exists no set formula or program that churns out a set result when utilizing ABA. ABA 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.
The American Academy of Pediatrics (AAP) is quite respected and yet the group has presented conclusions that have not yet been validated. In its 2007,Management of Children With Autism Spectrum Disorders - the AAP gave a stamp of approval in recommendations for intense earliest autism intervention. The AAP made claims that earliest intense autism intervention is shown 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 above claims have yet to be validated by any hard data in the scientific community.
AAP's own sources defy the lone empirically represented statement: The result of looking through the sources (31-40) provided in support of the representation that substantial and sustained gains are realized via intense earliest intervention - is that the very source 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.
From the cited data provided for the recommendation given by AAP, one finds lack of support for conclusive findings on intensive earliest autism intervention outcome:
31) Cohen, H, Amerine-Dickens M, Smith T. (Early intensive behavioral treatment; replication of the UCLA model in a community setting) J Dev Behav Pediatr A three year study in which involved no longer term follow up after initial gains.
32) Eikeseth s, Smith T, Jahr E, Eldevik S. Intensive behavioral treatment at school for 4- to 7- year - old children with autism: a 1- year comparison controlled study. Behav Modif No follow up after initial study.
33) Eldevik S, Eikeseth S, Jahr E, Smith T (Effects of low- intensity behavioral treatment for children with autism and mental retardation) J Autism Dev Disord 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)Howard JS, Sparkman CR, Cohen HG, Green G, Stanislaw H (A comparison of intensive behavioral analytic and eclectic treatments for young children with autism) Res Dev Disabil A comparison between intensity and type of programming. No long term follow up.
35) Lovaas OI (Behavioral treatment and normal education and intellectual functioning in young autistic children) J Consult Clin Psychol No long term follow up.
36) McEachin JJ, Smith T, Lovaas OI (Long term outcome for children with autism who recieved early intensive behavioral treatment) Am J Ment Retar 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) 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.
38) Smith T, (Outcome of early intervention for children with autism) Clin Psychol Sci Pract
In part, this source presents the following: 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) Smith T, Groen AD, Wynne JW (Randomized trial of intensive early intervention for children with pervasive developmental disorder) Am J Ment Retar The study had no follow up.
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.
41) Lovaas (Teaching Individuals with Developmental Delays) I have this book. From when we utilized earliest intervention in our home. It says was Lovaas usually says.
No proof exists with regard to the long term outcome forecasted by mandate lobby - who push for intense autism treatments: Intense earliest autism intervention has not been proven to provide sustained or substantial benefit over long term, even shorter term presents many questions. Most recently, mandates for insuring autism treatments have been instated, state by state. The main goal of these mandates is to fund intense and early autism intervention. Intense earliest intervention has not been proven to change the neurology behind autism, however - families will do whatever they can if there is even an unproven chance for better outcome. The question remains, while families are willing to go the extra in order to fund therapies that are presented but no proven as cure - should communities have to share the burden?
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 that our communities recieve from being lied to. The mandate lie may actually result in making things worse for our autism spectrum loved ones, in that it will result in segregation and 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.
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.