Education

Autism and Politicians: A Legislative, Anti-Science Love Affair

| by Val

In Connecticut, a law will make it illegal to impersonate a qualifed therapist - something that is already prosecuteable in that state - a woman already serving three years in prison for such. Those advocating for the law want to stop individuals from preying upon parent's fears and finances. Even though a law in place already stopped a woman from doing so...

From the article:

Sen. Martin Looney of New Haven, Connecticut's Autism Speaks group and other supporters say people impersonating certified therapists can rob children of legitimate, critically needed early intervention.

Autism Speaks takes great pains to align itself with this cause, as with the autism insurance mandate cause. Anything to put the A word, in the public eye. When I read the above article I instantly wondered how hard it might be for our autism experts to start telling the truth so that they might cease in robbing the complete truth from families and children? Or does Autism Speaks and other organizations also prey by making raids for the sake of booty (as defined by Merriam Webster)? At any rate - they do parse out the truth as they see fit.  

Some experts aligned with Autism Speaks and many other organizations allude to scientific findings where none exist in order to promote laws and mandates that further no agenda but that of the snake oil they can sell to newly engage parents - ones just beginning to learn about the autism journey. My question is, why are those who lobby trying to sell the snake oil? What good can come from legislating medicine or treatments, especially ones that will not do what they say they will do?

Applied Behavioral Analysis goes afoul, compliments of your autism insurance mandate.

The ABA teaching models that have been researched and advocated for by the autism mandate elite assure an increase in the likelihood of less favorable results during programming. Indeed the mandate advocates have provided a rush to judgement ABA environment, ripe for failure. In so doing, insurance will be legally able to deny many more requests for payment of intervention services, once the failed ABA models do not result in ongoing improvement for the affected child.

Autism insurance mandate advocates say, but have not scientifically verified, that ABA is just like a medical treatment - and they also provide a model that does not prescribe proper treament. Their prescription is akin to giving a person with a broken leg a piece of paper that says the leg will get better, while not providing the surgery required, and leaving a cast on for a day; that is what the current autism insurance mandates prescription will mean for the majority of autism affected families. The mandates haven't even meant that much for many families already.

As it stands, or since mandates will not have a leg to stand on. Insurance will not be required to fund any affected child's program once lack of benefit is evidenced. Without favorable outcome - game over. This is what the autism elite have brought to every family; they have made up their own rules as far as what ABA programming is actually proven to do. In so falsifying, they have literally allowed an unsubstantiatable method that may actually commit long term harm for the cause of the overall autism spectrum.

The type of advocating engaged upon by the autism elite media darlings has made impossible, the good that ABA type programming might have actually done over the longer term for more autism affected individuals. These advocates have assured less success, less adaptation, less overcoming by affected children and their families - simply because they chose to sell so many false conclusions about what ABA is actually going to accomplish.

Sure a minority of autism affected children are going to realize high functioning or even normal function; but this has always been the case - with or without earliest intensive intervention. Those who are pushing for the insurance 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 intervention utilized; these types seem to be in the majority.

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%) who did not exclusively opt for intense interventions experienced a good outcome in spite of intervention. This would have been under criteria that did not utilized too early to tell labeling that Dawson and other researchers have chosen to engage upon. 

For the Regression group singled out above, increased costs would likely remain as a certainty over a lifetime. The Plateau group lifetime costs cannot be guaranteed to go down either. 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.

The Applied Behavioral Analysis (ABA) term does not identify a singular method that provides an end game of scientifically proven results. Creating falsehood about what ABA can accomplish as current autism insurance mandate advocates are doing, will result in ineffectiveness due to overall programming disarray from flawed intervention models.

ABA effectiveness is only scientifically verifiable a child at a time, via analysis engaged upon for that child alone. The truest form ABA is:

  • Applied as a tailored treatment to a singular child with ongoing interpretation of those singular results.
  • Applied via the ongoing use of multiple methods that are either retained or eliminated according the individual child's response.

 

The current autism insurance mandate advocates' logic behind pushing for ABA like treatment models that have been based on group application and overall group response, is lacking.  The researched group model outcomes actually prove lack of result for the majority in the spectrum...over many decades worth of research.

 

Applied Behavioral Analysis types of intervention are comprised of a variety of methods. The term ABA does not define a singular program, or method, that can easily be applied with regard to the treatment needs of the very broad autism spectrum. (See, or skip through the following explanation of what one families program look liked):

In-home report: The behavioral intervention home program that Sarah was involved in was one of behavior modification based on operant conditioning theory. This type of programming is also known as ABA (Applied Behavior Analysis) or discrete trial training. When behavior modification is used with children with autism, the child’s behaviors are divided into deficits and excesses. Skills which are deficient are taught and behaviors that are excessive are decreased. Each skill to be taught is broken down into its most simple individual components. The child is then prompted to exhibit the desired simple skills and rewarded for success. Prompts may be used initially to elicit the behavior then are gradually removed so that the child is able to demonstrate independent performance of the behavior. As a result, the behavior is strengthened and gradually acquired. Once individual components of the behavior have been acquired, each component is chained together to produce behaviors which are more complex and functional. As new behaviors are learned, inappropriate behaviors are not rewarded. As a result, these inappropriate behaviors decrease in strength and gradually extinguish. This results in inappropriate behaviors being replaced by more functional and desirable behaviors which enable the child to more successfully communicate and learn.

The ABA like model does, in some cases, decrease the strength of inappropriate behaviors and allow for increase in more functional behaviors. Here is an example of some methods that were identified and utilized in order to allow for a shorter term response of improvement - however the child did present with schizophrenic type psychosis in spite of utilizing intense earliest intervetion. Keep in mind that methods in ABA type programs vary tremendously while you consider the following explanation of methods. (See, or skip through the following example):

The above program included: discrete-trials, hour-intensive massed trials, naturalistic behavioral strategies, incidental teaching, preschool and pivotal response. During the sessions, the therapist would present discrete/massed trials (drills), but they also engaged young Sarah in a predetermined fun activity between drills. The fun activity involved the therapist utilizing a more naturalistic, incidental teaching strategy. Pivotal response was represented in the process, as elimination of some stimulatory behaviors appeared to coincide with Sarah's acquisition of new skills. The first year had Sarah involved in 8 hour per day programming, and the second year 4 to 6 hours per day. (Outcome in Hello, Dr. Wells)

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 ascertain 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 sourced 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) 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.
Even considering the faulty peer review that goes on...The autism mandate lobby has 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 that 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 questionable activity are given a complete pass.
 
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 majority cure when none exists. The affected children will be kept out of view due to the push for private "normalization" therapy, 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. (link)
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), I know 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.