Insurance Mandates, Forced Treatment for Autism Pariahs?

| by Val

Reporters seem to fail to look at the autism picture as completely as they might need to when it comes to insurance mandates for autism treatments - which is actually something I understand. Those in the pharma industry who lobby for forced medication treatment, while creepy - also makes complete sense; since the lobby most likely wants to make as much money as possible from labeling as many children as early as possible - with autism...a pariah like and incurable disease according to one.

No long term follow up of young children involved in intensive therapies for treatment of autism have been completed...and yet there continue to be mountain-top cries about how the therapies can cure the youngest - if only they are guaranteed unlimited access to the aforemention therapies. With the belief that autism therapies will cure autism affected children, another rally cry is that of - insurance MUST cover the therapies; upon the insistence of therapy as cure, it appears that the insurance company is denied the option of determining what type of treatment is most beneficial, or what treatment has actually gone through the rigorous process of actually being proven effective.  

Refer to this article when considering autism treatments that will supposedly be covered by insurance - through current mandates that are going on state by state. According to the linked article by Jean Mercer, Ph.D., complimentary and alternative treatments (CAM) are not considered medically approved. Basically, if there is not significant data to support the method, it does not become medically approved. CAMs are generally methods that have anecdotal findings that need to be pursued.

Mercer brings to mind that the laws of similarity and sympathy seem to be at play as far as moving populations into a mindset that insurance mandates are going to do what has yet to be proven by hard data. Every determination and legislative justification for mandating insurance coverage of intensive earliest intervention thus far is based on the chance that earliest intervention will normalize the majority of children - and also based on the anecdotal reports from some parents who have normalized their young child; ones that are still very young and not quite finished with their very unique walk with autism. Again the mandates are there because of the chance that there might be improvement, and not because of already existing evidence supporting efficacy and reduction in lifelong needs or costs.

It is right to try whatever might be efficacious for the good of each child, but it is demagoguery to create falsehood in order to meet an objective that will not even do what many are saying it will do.  The intense programs are good and right because they give us a way to interact with our kids, but the therapies have not done what is proposed by many. They have not normalized the majority of the affected children to the point of...no worries mate. And it is not because everyone has been doing it wrong all this time.

During early research into intensive autism programming by Lovaas - the possibility that initial IQ measures many times dictate later outcome, had most probably influenced the underpinnings of his study. Did Lovaas purposefully chose affected children with higher IQ to be involved in his study? 

Lovaas's study results were 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) 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.

IQ is an attention grabber as it relates to how it is represented in the autism spectrum. IQ measures upon initial diagnoses provide an indication of what to expect later on. According to Dr. James Copeland, if two children present with the same degree of atypicality (autistic features), but one has an IQ average of 100 and the other 40 to 55, the atypicality will shrink for the child with the higher IQ but not for the child with the lower IQ - regardless of the type of intervention.

...There have been at least ten long-term follow-up studies of persons with ASD, going back nearly 40 years and totalling over 1000 subjects, that bear out this fact. In 1976, one researcher correctly concluded "In terms of scholastic progress, social competence, and work opportunities, the child's IQ level is as influential as the presence of autism."(Copeland Article)


From years' long personal experience of watching my daughter and our neighbors son, who are both within the spectrum, I have found that IQ measures most definitely did indicate probable outcome. My daughter had low IQ measures upon being presented with the autism label, and earliest intense interventions did provided initial benefit similar to what was described in this story. However, the benefit was not prolonged (over her lifetime); she did regress over a couple of years' time. There was not a way to provide ABA type teaching for next grades and harder concepts, and her mind could not entertain the harder concepts anyhow. She remains moderate-to-severely autistic. My neighbor's son who had higher IQ measures upon autism identification was not involved in earliest intervention, and he is mainstreamed in high school. The other day, I saw this young man and we did some catching up. I jokingly mentioned that my daughter might start asking for her driver's license and he replied, "Yeah, but isn't she a little autistic?" and had a worried look on his face. He still has autism tendencies, but he gets along on his own quite wonderfully.

Long term follow-up seems to be the sticking point when it comes to researching what might be of overall benefit for those within the autism spectrum, as far as intervention. What study or scientific finding has validated long term outcome, initiated from an intense earliest intervention program?

It appears that JAAPA sees promise in the Early Start Denver Model findings but a little more follow up needs to be done to determine overall implications of earliest intervention's lifelong benefits. What is clear, is that communication skills are the biggest benefit derived from earliest intervention strategies - with autistic features remaining.

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.


JAAPA concluded that long term benefit had not been determined for the popular ESDM study; and the study results reveal that over half of the children involved, remained within the autism spectrum - albeit with some improvements in language and adaptive behavior - while the autistic features remained.

From IQ and Autism Onset Patterns: 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.


A most enlightening encounter on the comment section of another post presents some conundrums in autism research and possible lack of "rigors" in research and conclusions:

  • ABA type programming...is an applied science of human behavior that INFORMS effective autism treatment. And indeed, there is some question as to which procedures, practices, and curriculums fall under this umbrella. With so many "therapies" being presented as autism treatment, the most important thing is for parents, educators, and all those who care for someone with a diagnosis of autism to learn how to interpret research and understand what evidence-based means and how we establish that something is indeed evidence-based. (Behavior Guy)
  • The problem of group study - which is the current model type utilized in research of autism education therapies: Group studies try to "erase" the individual differences between children in the assumption that group averages are closer to the truth. This assumption comes from the medical model which seeks to apply a generic diagnosis to the individual child and then treat them the rest of their life according to that gross label. But we all know that our children are much more different than they are alike, and that they grow and develop in unique ways. So the first hundred years of research failed to yield any effective results. (Dr. Eric Larsen)
  • With the problem of currently used study group models and their possibly flawed conclusions comes an idea for resolution to the problem: ...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)

And so it goes, we have insurance mandates being set forth state by state - and there is as of yet so much to be settled with regard to the issue of autism intervention. I get why people push for the mandates with their whole heart because I have been where they are at.

While I understand the reason why an insurance mandate might be coming to every state near you, there are those like Quint Scroop, a senior lobbyist and moral champion from Pharmaceutical Research and Manufacturers of America (PhRMA), who are pushing for evaluation and treatment legislation that will be carried forth no matter the will of the parent.

“We’re really pushing hard for legislation to enforce mandatory autism screening and treatments in the public schools,” boasted Scroop. “Parents should listen to and proactively follow the screening recommendations of our physicians, regardless of whether they have concerns.” (link)

And even more:

There's no reason why the people who suffer from it (autism) need to remain pariahs, throwing in their lots with other incurables. And, yes, the drugs will prevail.”

First of all, the prevailing drug he is talking about hasn't really been completely vetted. Secondly, I get it when parents of the very young autism affected child advocate and push for betterment according to what they have seen so far with their child, because they are following their heart. I understand that kind of journey because I have been walking it too. I only get steamed when I read the thoughts and understand the true intention of a lobbiest who sees autism affected individuals as pariahs...and incurables.

I am just a mom and I have a daughter who gives me lots to think and write about...

Hello, Dr. Wells - a retrospective look at autism intervention, circa mid 1990's thru 2000's. It is about the first sixteen years in the life of one girl who started out with moderate-to-severe autism and then developed schizophrenic psychosis that was refractory to treatment for a few years. She is doing better now though, and she is eighteen!