IDEA Disorder, Intellectual Disability-Epilepsy-Autism Disorder, On World Autism Awareness Day

Conor  a year ago at the local ICU where he stayed for 6 days while the ICU professionals worked to save his life and return him to us in good health after a serious adverse reaction to his seizure medications.  Other parents of children with severe autism disorders and intellectual disabilities should be made aware that their children are at very substantial risk of seizure activity particularly with the onset of adolescence.  We didn't know these well established relationships with any certainty until our son started experiencing them. 

April 2 will be another World Autism Awareness Day in which the harsh realities that many with autism disorders live with will once again be hidden from public sight.  Everyone will wear their blue shirts (including Conor and me)  and many will put blue lights in front of their homes, businesses and legislatures.  The Autism Feel Good crowd will tell everyone that autism is a difference not a disability and some will tell the world that historical geniuses in every field in the sciences, math, literature, art from Van Gogh to Einstein were probably autistic. 

A misconception underlying much of the WAAD false awareness is found in the DSM assertion that there is one autism disorder with only 2 diagnostic criteria: Social communication/social interaction deficits and  Restricted, repetitive patterns of behavior, interests, or activities. The DSM does also reference various "comorbid" conditions sometimes found in connection with autism including several from which my now 18 year old son has suffered along with his severe autism disorder: wandering, self injurious behavior, reactive aggression, absence seizures and tonic clonic seizures.  The DSM categorization of disorders, as none other than NIMH Director Dr Tom Insel has pointed out, have no solid evidence basis for its conceptualizations of disorders. TheyDSM categories lack validity. So said Dr Tom Insel before he repeated it again (sort of) but stated that he only meant it for research not clinical purposes. 

One of the areas in which the DSM5 erred egregiously (in the humble opinion of this lowly father of an 18 year old son with severe autism disorder, intellectual disability and epileptic seizures)  was to combine the 3 varied and distinctively different disorders of Autistic Disorder, PDD-NOS and Aspergers into one "spectrum" disorder.  Renowned autism experts , including such authorities as Lynn Waterhouse, in Rethinking Autism: Variation and Complexity,  have started to explicitly describe "autism" as a varied, complex and heterogenous group of disorders or symptoms. Dr Waterhouse has again written on the subject of autism heterogeneity in a paper co-authored with Christopher Gillberg, (2014) Why Autism Must Be Taken Apart, the abstract of which states:

"Abstract

Although accumulated evidence has demonstrated that autism is found with many varied brain dysfunctions, researchers have tried to find a single brain dysfunction that would provide neurobiological validity for autism. However, unitary models of autism brain dysfunction have not adequately addressed conflicting evidence, and efforts to find a single unifying brain dysfunction have led the field away from research to explore individual variation and micro-subgroups. Autism must be taken apart in order to find neurobiological treatment targets. Three research changes are needed. The belief that there is a single defining autism spectrum disorder brain dysfunction must be relinquished. The noise caused by the thorny brain-symptom inference problem must be reduced. Researchers must explore individual variation in brain measures within autism.”

I am not an autism expert. I am the father, as I have stated, of an 18 year old son with autism, intellectual disability and seizure activities becoming most pronounced during his teen years when absence seizures became frequent and eventually became identified with grand mal or tonic clonic seizures.  As I have confessed, this pseudo tough guy was scared stiff to hear the sounds emitted by my son's body during the onset of his first tonic clonic seizure, to find him laying on his side his body jerking violently with drool oozing out of the cornier of his mouth.  He suffered two such seizures and a life threatening adverse reaction to his first seizure medication (Rhabdomyolysis)  which landed him in the ICU (Intensive Care Unit) of the local hospital where the ICU team saved his life and gave him back to us.

My son's condition is recognized in many autism study statistics. The World Health Organization, 2013, estimates that approximately 50% of persons with autism disorders also have an intellectual disability.  To me that large a number is not a "coincidence" or a "comorbidity" whatever that term is meant to signify in the real world. To me my son's autism and intellectual disability are aspects of one brain disorder.  

Given those two aspects of my son's brain disorder it should not have come as a surprise to me that he might be at very substantial risk of suffering seizures, particularly with the onset of his teen years.  The scientific literature indicates that persons with autism spectrum disorders have a much higher rate of epilepsy than the general population; as high as 30%.  The literature also indicates that, among persons with autism. the rate of those who also have epileptic seizures is substantially higher among those with .... intellectual disability and the seizures often become apparent during the teen years ... exactly what happened to my son with severe autism and intellectual disability. 

My son's autism is not the autism of Temple Grandin, Michelle Dawson or Ari Ne'eman.  He was diagnosed early 16 years ago at age 2 years because of the severity of his diagnostic symptoms and the tenaciousness of his mother who pressed our good doctors the hardest for a medical understanding of our son's condition.  

Still with the autism and ID we did not anticipate the onset of seizure activities. This humble father recommends strongly that on World Autism Awareness Day, Autism Speaks and other autism organizations should be honest with people around the world and tell them that where autism is present in a child there is a substantial risk of epileptic seizures.   

I also humbly recommend that the great autism thinkers of our day should consider looking at and studying instances of combined Intellectual Disability, Autism and Epilepsy as one group of conditions that might have a common origin in the brain as I believe to be true based on living with my son for 18 years. 

IDEA Disorder, Intellectual Disability-Epilepsy-Autism Disorder.  By all means reject it if you believe based on study and evidence that it is unsound but don't reject it solely because a lowly parent makes the suggestion.  I have 18 years of 24/7 experience living with these conditions in my son. Statistics and professional expertise obviously count and in our society are determinative but the direct observation and experience of parents should not be ignored or ridiculed as it is all too often. 

The Burden of Proof: IACC Director Insel's 2009 Statement On Autism Increases

"Based on the above mentioned research, approximately 53% percent of the increase in autism prevalence over time may be explained by changes in diagnosis (26%), greater awareness (16%), and an increase in parental age (11%). While this research is beginning to help us understand the increase in autism prevalence, half of the increase is still unexplained and not due to better diagnosis, greater awareness, and social factors alone. Environmental factors, and their interactions with genetic susceptibilities, are likely contributors to increase in prevalence and are the subject of numerous research projects currently supported by Autism Speaks.

The increase in autism prevalence is real and the public health crisis is growing. More families are affected by autism today then ever before."

Autism Speaks Official Blog, October 22, 2010, 

Before the Recent CDC estimate that autism now affects 1 in 88 children.

The Neurodiversity ideologues are doing it again.  

Each announcement of increased  rates of autism diagnoses (the past year saw the CDC revise its estimate from 1 in 110 to 1 in 88) brings the same, tired refrain about increases in autism: it ain't real babe.  The Neurodiversity ideologues recycle the explanations trotted out for each announced increased in autism rates: 1994 DSM diagnostic definition changes and increased awareness being the two most prominent. 

They have done so again in an article in Discovers "big idea" blog "The Crux" by Emily Willingham. Discover is the home of Neurodiversity writer Steve Silberman and the Willingham article was immediately embraced in an article by another Neurodiversity "science" journal: Boing Boing.  Boing Boing quickly  applied its scientific expertise and  reported, based on Willingham's opinions, that " It looks like the majority of the "increase" in diagnoses can really be attributed to the process of diagnosis itself"

No one denies that the two decade old diagnostic definition change and increased awareness factors, explain part of these increases, the issue is whether they explain them entirely or to what extent and whether the increased rates also reflect real increases, increases arising from environmental factors. 

Dr. Tom Insel is known to everyone involved in autism issues as the head of the IACC, the Interagency Autism Coordinating Committee.  He can not be attacked as being an "anti-vaxxer" or as an emotional, hysterical parent of an autistic child.  Dr. Insel had this to say in a December 18, 2009 interview by David Kirby:

"It looks like about 24 percent of the California increase can be attributed to something like a change in diagnosis criteria. They are beginning to use multiple diagnoses. So that children before, who were listed simply as mentally retarded rather than autism - but they had both - are now logged in with both. But that really caps out at around 24 percent. There’s probably another piece of this, which globally could be attributed to ascertainment. But that caps out at around 16 percent, or something like that. And when you put all of that together, you are still well below explaining 50 percent of the increase.

So what does that mean? It means that, as far as I can tell, the burden of proof is upon anybody who feels that there is NOT a real increase here in the number of kids affected. Because all of the evidence we have up until now says that, well there are what we could call – I wouldn’t call them ‘trivial’ factors – but they are factors that are not related to incidence, but would be simply related to prevalence, like ascertainment. But they don’t really explain away this huge increase. "

This tells you that, you really have to take this very seriously. From everything they are looking at, this is not something that can be explained away by methodology, by diagnosis. Some piece of it can, but the whole thing can’t."" 

It fits Emily Willingham's Neurodiversity ideology to recycle the diagnostic change/substitution and increased awareness factors.  What we don't need is yet another recycling of these long understood factors which undoubtedly explain part of the increases in autism rates.  What we do need is a focused environmental research strategy as advocated for In A Research Strategy to Discover the Environmental Causes of Autism and Neurodevelopmental Disabilities, an editorial in a recent issue of Environmental Health Perspectives, authors Philip J. Landrigan, Luca Lambertini and Linda S. Birnbaum.

Landrigan, Labertini and Birnbaum summarized the evidence for the "proof of principle" that early exposures during “windows of vulnerability” that open only in embryonic and fetal life and have no later counterpart can cause autism.  They review the large numbers of synthetic chemicals, many of them untested, some of which are known to have toxic properties. The authors proposed a strategic approach to researching possible environmental causes of autism by focusing:

"research in environmental causation of NDDs on a short list of chemicals where concentrated study has high potential to generate actionable findings in the near future. Its ultimate purpose is to catalyze new evidence-based programs for prevention of disease in America’s children."

We don't need more recycling of the known diagnostic change and ascertainment factors that undoubtedly explain part of the incredible increases in autism diagnoses. What we need is leadership by the IACC and other major autism focused health agencies to encourage a stragic approach to determine  possible environmental factors involved in causing the various autism disorders. 

What we need is to find out what has been, and still is, happening to our children.  Until we do the burden of proof is on those who push the non-environmental factors which explain only part of the incredible increases in autism diagnostic rates.

Autism Rising: 1 in 100 US Children Have an Autism Disorder

The images above are taken from the autism section of the 2007 US National Survey of Children's Health and indicate that 1 in 100 American children in the 2 to 17 age range have an autism spectrum disorder. That figure is yet another startling indication of the existence of a real autism crisis. Those who deny that environmental factors cause, in whole or in part, autism disorders, will have less and less credibility as 1% of American children are reported autistic. The expanded definition of autism disorders to include Aspergers Disorder in 1993-1994 is irrelevant to an increase from 1 in 150 reported by the CDC in the past few years to 1 in 100 now as reported by the NSCH. The 1 in 100 figure is in line with the UK figures as well although there a recent study suggests the actual rate may be closer to 1 in 58.

This new report is startling but where is the mainstream media on this? Why is the same media that have been busy ridiculing parents who question possible vaccine autism connections silent when public authorities provide information showing dramatic increases in autism? Since my son was diagnosed with autism in 1998 the reported figures for autism have changed from 1 in 500 to 1 in 250 to 1 in 166 to 1 in 100. Does the 1993-4 diagnositc definition change really explain fully the relentless increase in reported cases of autism over the past decade from 1999 to 2009?

And why are people like Dr. Tom Insel of the Inter Agency Autism Coordinating Committee silent? Autism researcher Teresa Binstock pointed out in 1999 that autism research funding allocations had been weighted heavily in favor of the "it's gotta be genetic" model of autism research funding allocations. The authors of the recent University of California Davis study which suggested environmental factors were involved in the increasing autism numbers in California have highlighted the neglected funding for environmental autism research:

“Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones. We need to even out the funding,” Hertz-Picciotto said."

Over the past decade the numbers of autism cases have skyrocketed and yet the autism research funding still reflects the "it's gotta be genetic" model that Binstock outed in 1999. What is wrong with this picture? What is wrong with the decision makers who refuse to authorize funding to research environmental causes of autism? Do they have conflicts of interest that tie their hands or are they just too stubborn and tied to outdated paradigms to change?

In his recent appearance before Senator Harkin's subcommittee Dr. Insel desperately insisted that a comparative study of vaccinated and unvaccinated populations could not be done for ethical reasons even though unvaccinated populations already exist in the US and even though contrary statements have been made by people like Dr. Bernadine Healy, Dr. Julie Gerberding, and Dr. Duane Alexander. I DO NOT allege ANY conflicts of interest on the part of Dr. Insel. He seemed more like a true believer who does not have an open mind to arguments that challenge his views about vaccine safety.

Autism research funding has been heavily weighted toward genetic causes of autism. It is time to provide some balance as researcher Irva Hertz-Picciotto said and conduct environmentally based autism research. It is time to research all possible environmental causes of autism, including possible vaccine factors, as Dr. Jon Poling has stated.

autism