All in the Mind

Prescience from January 2002: The Myth of Autism

In Leo Kanner's now classic 1943 paper he outlined the behavior pattern, present from early in life, which he named 'early infantile autism'. Prior to this, there were, in the literature, occasional accounts of individual children whose behavior fitted the picture Kanner later described. Kanner described only the autistic children referred to his clinic and, later on, those attending a particular special school (Kanner,1973). He made no estimates of the numbers in the general population, but thought that his syndrome was rare.

Later on Kanner and Eisenberg (1956) discussed Kanner's original conception of autism and the five features he considered to be diagnostic. These were, a profound lack of affective contact with other people; an anxiously obsessive desire for the preservation of sameness in the child's routines and environment; a fascination for objects, which are handled with skill in fine motor movements (an area of actual weakness in many of the children being diagnosed today); mutism or a kind of language that does not seem intended for inter-personal communication; good cognitive potential shown in feats of memory or skills on performance tests, especially the Séguin form board. Kanner also emphasized onset from birth or before 30 months.

In the same paper, Kanner and Eisenberg modified the diagnostic criteria by selecting two as essential.

These were:

  1. a profound lack of affective contact
  2. repetitive, ritualistic behavior, which must be of an elaborate kind.

They considered that, if these two features were present, the rest of the typical clinical picture would also be found THEN: 1 – 2 children / 10,000

Now: 1 child / 500, with much higher numbers being quoted routinely. So, how can so many children now have such a previously rare disorder? How can a rare, almost unheard of “severe mental dysfunction†become something every pediatrician is seeing, something every parent is concerned about? How can we now have this rare misfortune become an epiphenomenon threatening to overwhelm our school and social systems, while destroying families across this country, and around the world?

To understand this, one needs to go back to the beginning. Per above, Kanner (1943) described a disorder by its “behavioral†features. Needless to say, “behavioral†dysfunction can be caused by many factors, NOT just the idea of a developmental or psychiatric dysfunction, as held forth, for so many years. Think of it, an idea, literally now dictum, held forth over decades, with ONLY a “behavioral†pattern for diagnosis, not one objective or consistent physiologic dysfunction or finding required to prove or disprove this “disorder / diagnosis,†(but “somehow†all these children have it FOR LIFE). In fact, over the years, to this day, health professionals have had no idea what causes this disorder. Explanations have ranged from childhood schizophrenia to bad parenting to “something†biologic, all with the underlying concept that “something†must have happened “developmentally.â€

Somehow (mechanism unknown) the brain was “miswired,†these children were not okay, COULD NOT be okay (but with NO idea of what was happening, WHY it happened, even HOW it happened).

Graduating medical school (UCLA) I was told that IF I saw one Autistic child in my entire lifetime of practice it would be “one too many.†Over the last 10 – 15 years that is sadly no longer true for myself or many other pediatricians. How can this be? Scientifically (logic not myth) how can this be possible?

Since “developmental†disorders were NOT considered “medical†disorders, medical doctors were not the primary physicians consulted or involved with their management. Likewise, the brain was essentially a “Black Box,†with essentially no real evidence allowing study or insight into what was really happening with this or most “neurological†or “psychological disorders. If there was NO definable objective reason for what was happening, “it must be psychological†seemed the standard cry of medicine. Therefore, as Psychologists and Psychiatrists rapidly expanded the above definition to include all the children appearing with “spectrum†dysfunction, the first large mistake was made.

Suddenly (mid - late 80's / early 90's) there were a lot of children appearing that did NOT fit “classic†Autism. This should have created appropriate questions and initiated scientific, medical investigations.

“What's going on? Why are we suddenly seeing so many dysfunctional children? Maybe something is wrong here? MAYBE this is not Autism? Instead, literally the “definition†just kept being expanded, modified, and ALL the new children were just put into a variation of the OLD basket. It is very likely, children and society itself would be way ahead IF instead of expanding the “basket†enlarging the alphabet soup of Autism (PDD, Aspergers, Autistic spectrum, LKS variant, etc.), experts had said,

maybe this is NOT Autism, maybe we have another problem (with some “Autistic†like symptoms) occurring. Instead they (the “expertsâ€) just kept expanding the definition, expanding the “basket†but NEVER asked the critical question, do these children even belong in this basket? How many parents (often against their own belief) presently are being told their children have this strange disorder (or are on the spectrum) and they must learn to live with it, accept it? How many parents think their children even come close to meeting Kanner's main criteria “a profound lack of affective contact and elaborate repetitive, ritualistic behavior?â€

The good news is science is finally on the children's side, but sadly it appears the old logic and system are many years away from changing or waking up. A cold, hard fact of science says “You cannot have an epidemic of ANY type of genetic or developmental disorder†It is impossible, cannot happen, there are NO exceptions!! And yet, the vast majority of the researchers in this country, the world, are still studying these children as if they truly had some undefined, unknown “developmental†disorder.

Instead of looking for the correct answers, instead of focusing on at this point what can ONLY be understood as a DISEASE (not developmental) process, the “system†continues to fund researcher's trying to figure out and understand “Autism†(as a developmental disorder). This is why so little progress has occurred in spite of millions of dollars being spent. Researchers are being funded to study what 99.9% of the children appearing today CANNOT have. IF this process continues,

EVERYONE will lose (except the researchers and universities receiving mass amounts of funding and the “industry†of “alternative therapists†helping to try and “treat†these sadly dysfunctional, “special needs†children).

As noted, it is blatantly obvious to all but the “system,†99.9% of your children do not come close to meeting Kanner's definition of Autism. It has become absolutely safe to say, 99.9% of children being diagnosed as “Autistic†do not have Autism (as the term is understood or used), but rather reflect a disease state, a CNS dysfunction, manifested by many Autistic symptoms, but unlike a developmental disorder, treatable, changeable IF we act quickly enough. But, how many of the present “leaders,†how many of the existing “Autistic†groups are questioning present funding, present efforts? How many are going before congress saying we have a large group of children that IF helped, IF treated might grow up to be productive citizens, might pay taxes (rather than utilize tax services) one day? Why NOT?

That is the “myth†of Autism. Children are being “labeled†with a disorder they DO NOT really have. Parents are being told there is little hope, when there should be a lot of reasons for hope. As long as we continue to “label†so many children / families with this “undefined,†“unexplained†disorder, few physicians, parents, or congressman EXPECT these children could ever really recover, really regain regular function. In the “myth†of Autism, many dangerous or partially successful therapies abound,

with “some success (often with large risks) being better than nothing.†Think of the difference, if physicians, therapists EXPECTED a child to recover, were focused on finding answers to fix this now, for this generation of children, rather than accept any degree of “minute†improvement as “wonderfulâ€.

It has become obvious, that “neuro-immune,†and / or chronic viral connections are the only pathways,

the only “proposed†mechanisms that have NO scientific contradictions, and an ever-enlarging compendium of articles in support. While many will pose the questions “where are the controlled studies,†EVERY medical fact and recent discovery helps substantiate the likelihood of an autoimmune, “neuro-immune†related process. Perhaps it's time this question / challenge should be turned around.

WHERE are the studies, where is the data showing all these children, all these families have to resign themselves to some permanent dysfunction, incurable disorder? Based on what “objective†data,

based on what “objective†studies are we committing so many children and families to this bleak prognosis, a very bleak future?

We ARE presently at a major crossroads. Are we going to continue to follow (blindly) OLD logic, OLD thinking with NO consistent physiologic dysfunction measurable / documented; OR can we unite behind scientifically sound data, more than “reasonable medical probability,†and clinical logic before we lose forever the chance to help THIS generation of children. There are excellent researchers, clinicians, and scientists ready to focus on solving this disease NOW, rather than study the “myth,†but this effort

(NIDS) remains buried under the wall of “controlled†misinformation. Unless, we all step up now to change this, to demand clinical science and logic, not “mythology†be applied to these children, the “system†could easily take another 10 – 15 years (or longer) to come around to the right answers. How are ready to step up and say, “enough is enough� How many millions of dollars have been spent (particularly in the last 6 – 7 years) with NO answers, NO new hope? Are we all going to wait another decade (or longer as many researchers predict) for possible answers or are we going to help solve this NOW? The NIDS effort was formed to help look at this crisis appropriately scientifically,

logically, MEDICALLY. Many parents are working hard to help make a real future for their children. It is up to all of you to decide if that effort is going to get a chance to succeed NOW for your children. Do we continue to follow “mythology†or do we turn to clinical logic and a true scientific understanding of your children's dysfunction / disease??

Respectfully submitted for consideration of all parents, educators, therapists, and health professionals being overwhelmed by “The Myth of Autism†(perhaps its time to change the focus, maybe really change the future for this generation of children and families)

PS: This was authored 8 years ago, shortly after I has received an odd ASD diagnosis, but 3 years before I reached the same conclusion and contriibuted to a book of the same the name, fimally published in November 2010.