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The Autism Intervention Mandate; Show Me Angry

| by Val

From House Okays Insurance Panel Bill

Buddy Waskey, a Colonial Heights contractor, said his construction business was suffering and that he can't afford another mandate. He said he could not understand why the same General Assembly that fought against the federal health-care mandate would try to impose a state mandate.

Buddy is talking about an autism insurance mandate in Virginia that exempts big business, but affects the bottom line of small business. Waskey might have a pretty clear look at the autism horizon since he has an autistic son, 15 yrs-old, who has been able to access treatments all along. I am just wondering if some of those services were provided via the public schools; which have already been dealing with the autism imperative.

I guess it takes a contractor from Virginia to point out how families of small children with autism are being drawn in, and many times emotionally incited by autism lobbies, to put into motion - mandated health care. Yes Virginia, a mandate is a mandate.  The same legislative body in Virginia that fought against the federal health care mandate, now pushes for a state mandate on autism treatment coverage; for a treatment that is actually, ill defined.

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Any intervention engaged upon is of the utmost importance because, in so doing, we are provided with a way to interact with our affected loved one. It is a wonderful thing as we become invested in our loved one via any intervention attempt. While so doing, we are finding ways to accept them - no matter the outcome. All of this considered, there remains no cure for autism - not even intense intervention has been proven to change the neurology of the condition. There already exists a sea of parents and professionals who have followed autism affected loved ones; they have engaged in the same intense therapies that are being touted now, and they know what the proven outcome has been. Research already exists that indicates intense intervention does not change lifelong outcome per se - in so much as, there are other factors in play that will give clues to long term prognosis.

A dilemma continues to transpire, while various highly respected professionals support the anecdotal as empirical; their promise of cure - that isn't a cure at all. Research has yet to provide hard and fast data that the intense eariliest interventions actually change the overall outcome for autism affected individuals, or even reduce costs later in life. While our scientific elite (many times accompanied by their lobbying lawyer associates) continue to present theory as fact (or empirical), they also succeed in changing many a politician's...politics.

Why is it that the autism elite who put forth falsehood have not been called on the carpet for reaching conclusions that have in no way been scientifically validated? How is it that the very prominent in the field of autism have developed their very own version of snake oil. All the while charming parents, panels and politicians?

Should the autism elite at least be questioned for manipulating data to support their own self interests? They reach conclusions that suit their ends, while their very means are to propose long term outcomes that have never been proven - with regard to autism intervention. These, who are numerous and well respected - are given a peer reviewed pass to continue on with their not-for-profit six figure salaried propaganda, empowering what is false.

Are the mandates really going to make a difference? Recently a mom in Missouri pointed out how her own state's mandated autism treatment coverage is a joke. She did not say it was a joke, she said it was a mandate that lacked planning; I am saying the mandate appears to be a joke that is hardly funny. The PUNCHLINE? Katie Olson was told that she can have the Missouri mandated insurance coverage for additional premium cost of 3000 dollars. Her thoughts...

Unfortunately it seems that a law was thrown onto the books without any real forethought, and now once again, those who are truly in need will continue to go without.

Do those who are advocating in the mandate march want unfettered access to funding via health insurance - without the benefit of checks and balances on types and costs of therapies, and if they are proven? Or do most of them simply want just enough of a hand in order to try and make a difference for their affected loved one?

In Virginia - proponents for the mandate, not yet completely passed, are warned not to look for more than is already being offered:

The bill was limited to apply to children from ages 2 to 6, to cap annual costs at $35,000 and to apply to businesses that employ more than 50 people and are not self-insured. It also covers public employees.

Last year In New York, those who wanted unfettered access (via A66888B) to the intensive treatments were let down when an alternate bill was presented for passage (S7000B/A10372A); passage failed. Those who wanted A66888B to pass lobbied against S7000B/A1032A. I guess that is the lose, lose scenario.

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.

What about the intensive treatment that so many are fighting tooth and nail for? What really, is the anecdotal - and at the same time empirical to so many - treatment?

What is the anecdotal ABA; 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. (see comments here)

Studies that have attempted to ascertain efficacy of various ABA type autism interventions might be called into question.  How many times have educational and psychological research endeavors into differing ABA types of programming been based upon the group research model? Group research models de-emphasize individual differences in autism affected children, making an assumption that - making a conclusion based upon an overall group response average provides a truthful or scientific result. It does not.

Some know that a different model for autism intervention must be considered: ...Obviously you need a higher degree of training in order to apply individually tailored treatments to different children, and hence the traditional funding models don't easily accommodate the use of highly qualified Board Certified Behavior Analysts. But those are the very funding models that we need to advocate for. (Dr. Eric Larsen)

With regard to the flawed group study model, two group studies come to mind;

  • The earliest Lovaas' study into ABA type teaching has been questioned. Notes by MJ Conner indicate that long term follow up was engaged upon for the Lovaa's group.

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)

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.

  • A 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.

It seems the issue of intervention outcome remains in question, even with all the reseach that has already been completed - to do with behavioral intervention; even with all the lobbying for mandates.

Not all families, or professionals are even interested in the ongoing theory that intensive therapies will alter the neurology behind autism.

In autism psychology meets neurology; therefore the autism spectrum label confuses. It is difficult to draw a defining line between that which is strictly a psychological concern and that which is a neurological concern. Too many times all exhibited features of autism have been thought to be done by volition - the affected individual doing such on purpose.

How does the zigzag between the two disciplines factor in to the autism intervention discussion?  Or relate to 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. 

We need to better understand that 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. It might mean that we are offering more stress to a child who may or may not be able to control the behavior - according to many factors that might present to do with situation and environment, and even time of year. Many asociative things to do with situations, environment and time of year - can exacerbate already existing neurological conditions of medical origin.

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 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?).

Imagine developing a strictly behavioral intervention for a child who has been labeled autistic, but who has an as yet to be identified tic disorder. The child is told to stop phrases or movements that are part of the disorder. The child cannot, because he or she has a tic disorder. The child has not received treatment or even empathy for that condition under the strictly social interpretation for the behavior. It is like telling a person with a broken leg to get up and walk - insisting repeatedly that they do so. This scenario is taking place daily under any strict behavioral approach.

An unfortunate bias presents once a child is given a label of autism. Once the label autism is applied, a social interpretation of behavior is assumed and neurological interpretation usually denied.

From Rethinking Autism... Leary and Hill (1996) analyzed the literature on symptoms associated with established movement disorders and those associated with autism. The greatest difference among these disabilities was the interpretation of the symptoms. In Tourette syndrome, Parkinson's disorder and catatonia, there was a neurological interpretation of symptoms. A social rather than a neurological interpretation was applied if the person had a label of autism. That which is called a "tic" in a person with Tourette syndrome is most often assumed to be a 'behavior' (and often a conscious choice) in a person with autism.

So what of  the above sensory and movement differences that are given important emphasis; the differences are comprised of motor problems, sensory problems, inertia, apraxia, dyspraxia, echoalia, mutism, behavior disorder, catatonia and just plain clumsiness. These are all things that are observed in autism, but are also expressed in neurology as medical symptoms that require careful thought with regard to treatment. The 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 soley 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.

In relating to my daughter's thus far eighteen years I must insist that Anne M. Donnellan, David A. Hill, and Martha R. Leary have presented worthy food for thought in their Rethinking Autism; Implications of Sensory and Movement Differences. With regard to the autism affected individual's ability to relate and participate in social interactions.

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.

Since sensory and movement differences are described in autism, but are also evidenced in many other disorders where neurological cause is acknowledged as a fact - we need to test the status quo thought processes which have lent preponderance to the research and teaching made popular, but not necessarily backed by anything beyond continuing theory that is presented as empirically supported.  Additionally, if the sensory and movement features of autism are acknowledge to be from neurological cause, the features become an acknowledged medical concern that insurance will cover.

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.

While behavioral treatments provide differing approaches that fulfill the goal of reaching a child, it is unlikely that these behavioral approaches iradicate the neurology behind a child's autism. The neurology will remain (running a different course for each affected individual) even if experts ignore the medical aspect.  While it is important to keep trying, it is also very important to include wisdom in the autism argument.  How wise is it to let autism get caught in a social or political agenda? How wise is it to allow the popular media to control the autism argument? No matter the result of these intrusions, families are left with the real life scraps - the truth behind all that is autism.

What remains, when all has been said and done thus far for our daughter, 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.