The Myth of Autism
Page 2
Those sixty-eight amino acids my wife was taking were from a company that at the time was producing amino acids of pharmaceutical grade (which in theory could be absorbed safely by the body). Since amino acids are the basic building blocks of proteins and other biomolecules, and play a role in energy pathways, it was a good premise: the company would take a patient’s blood specimen, analyze it, and then decide what mixture of supplements (proportion of amino acids and some vitamins) you needed to take to help the body get back to normal. In medical school, and in a summer internship, I was fortunate to study under Dr. Ben Kagan (Cedars-Sinai Hospital—UCLA). Several years, before he passed away, I got the courage to ask him about supplements. I was particularly interested in lysine, a key essential amino acid, for its known ability to fight viruses—and I thought the strange viruses in my wife’s blood might be cured with the proper amino acid treatments. “What do you think about amino acid supplements?” Ben looked at me, and he said, “You know, Michael, we tried to do that—help make a child healthier with amino acid supplements—but the first problem was that you have to have the proper ratio of arginine [the other key amino acid tied with the immune system, but a problem since it could strengthen, feed herpes-related viruses] to lysine. But way more important, we couldn’t get it past the liver.” I was told that this research had already been done in Boston back in the 1930s, and it had also been unsuccessful because they could not get the amino acids through the liver. Because the animo acids could not be absorbed, it was impossible to strengthen the right pathways in the body through supplementation. The medical community acknowledged that the concept had potential, but it seemed impractical. Dr. Kagan told me that most OTC (over-the-counter) products would not work because they could never be absorbed by the human body or pass the blood-brain barrier. Our bodies are designed to protect us from foreign substances—that’s why the acid in our stomachs is so strong and why we have a liver, other filtering devices, and protective cells.
Back at my practice, investigating if this avenue of therapy could really help, I was doing a lot of amino acid profiles. This test measured serum amino acid levels, in the belief that the “pattern” was predictive of the type of disease and some of the dysfunctions that were occurring, and in theory a guide on how to try to help change that by supporting the body in a very directed nutritional manner. I was noticing a similar pattern in both the children and the adults I was testing. By this time, I had begun to treat some of the parents of the children in my practice who were complaining of this generalized, nonspecific illness.
My practice began to grow, but instead of seeing newborns for wellness checkups, I was seeing chronic fatigue patients and children with CFS and children with mixed attention deficit and hyperactivity disorder (ADHD) and quiet attention deficit disorder (ADD) that we had never been taught about in medical school (because these categories had not existed at that time). One of my colleagues whose practice had yet to see a similar increase in these types of complaints joked that it must only be happening on my side of the street. How I wish that statement had been true.
While I was working with these amino acid profiles, using the company’s research and testing, looking at applications of their recommendations in products, the company sent me files of a group of families from West Los Angeles who had children with autism. Their head researcher had noted an early similarity in their testing and that of adults with chronic fatigue syndrome. They wanted me to run additional amino acid profiles, viral titers, and also candida (a form of yeast) titers on these children. At that time, you were considered a borderline quack if you even said the word candida. If I said I believed yeast caused the dysfunction in these children or adults, researchers I respect and counted on would have never spoken with me again, because I would have been a fool. If I qualified my discussion, noted that work on adults had confirmed that when the immune system is stressed, what we call “delayed hypersensitivity” is off or dysfunctional, the issue was open for discussion. At that point, anyone, a child or adult, is prone to a potential yeast or fungal overgrowth. Unless critically ill, this overgrowth will be appropriately restricted to the GI tract (sometimes vaginal area in females), sometimes the skin externally, but will not be found in a patient’s blood, their brain, or any other primary internal organ. In that way, yeast or candida can be a symptom—evidence of the stress on the body—but not the reason or cause. When I ran these tests, I made an interesting discovery. I noticed that the results of the amino acid profiles for the children with autism were similar to the results of these adults and other children whom I was seeing and treating in my practice for these generalized symptoms of chronic fatigue syndrome and the new ADHD variants. When one realizes that a previously high-functioning, type A, college-trained “yuppie” does not know why they went to the kitchen or drove to the end of the block, cannot remember the right word to say, and becomes overwhelmed in loud places and prone to panic attacks and anxiety attacks, one gains a tremendous insight as to what is really happening to these children, how bad they must feel, how terrified they must be at times, when we are completely misinterpreting them. I ran immune panels, viral titers, ANAs (antinuclear antibodies), and did NeuroSPECTs (brain Single Photon Emission Computed Tomography—an imaging technique showing blood flow in the brain using a low-dose radiologic isotope, with the rationale that blood flow correlates directly and objectively to brain function). There was an overlap of patterns of multiple viral titer elevations to Epstein-Barr, CMV (cytomegalovirus) and HHV6 (human herpes virus 6), and low NK cells (frequently below 4 or 5 percent—a key marker for immune dysfunction in children and adults). On NeuroSPECT the “autistic” children’s brains showed abnormalities nearly identical to those of the adults and older children in my practice—that is, a temporal lobe hypoprofusion affecting their function and specifically areas of memory, social skills, auditory processing, and language—all the deficits we mistakenly blame on autism. The results floored me. “What does autism have to do with the immune system?” I wondered. I, like everybody else at that time, had not even begun to consider the fact that the symptoms of “autism” might be caused by an illness. At that time, autism was considered to be a mysterious disorder with no known cause. Since patients seemed “psychotic,” and it was an era of psychiatry deeply set in Freudian theories (“refrigerator parenting” was thought to be a key reason for this psychological disorder), autism was defined as a form of childhood schizophrenia. The key point is when Dr. Kanner himself was asked what separated a child with this new idea of autism from classic childhood schizophrenia, Dr. Kanner’s response was, “The child with autism was never affectionate.” Based on that statement alone, 99.9 percent of the children today would not have “autism,” and the medical world would really have to be trying to figure out what was happening to these children. Without the myth of autism, we would be figuring out how a disease process could strike down and destroy a potentially normal child—not children mysteriously miswired, congenitally beyond hope of a true recovery (the basis for the concepts we call “autism”).
When Elyse realized these children had similar viral titers and immune markers as she had, she looked at me almost in tears and said, “If these children feel even one-tenth as bad as I did, you have to do something!” As an adult, although she hadn’t understood what was happening to her body, she had at least known she wasn’t normal. But these were children. “Mike,” she implored, “they don’t know what ‘well’ feels like. They have no basis for comparison. They may not know their brains don’t work. They believe this is all there is. There can’t be much quality of life.” She wanted me to take action.
But where to begin?
After approximately seven years of research and eighteen months of my treating Elyse with very primitive immune modulators and whatever else I could get my hands on to improve her immune system, (with the knowledge that there was no conclusive evidence that these agents were helpful, I would meticulously avoid any agent that we knew in theory cou
ld be potentially harmful to a normal, physiologic brain or body; I follow this strict policy to this day, and it has served me well), my wife returned to function and, as she puts it, “the world.” It is hard to believe looking back just how dysfunctional she was. Elyse has a very high IQ and graduated from college at nineteen years of age; she was not used to forgetting why she walked into the kitchen or where she left her keys, not experiencing “forgetfulness” (as can happen to anyone) but periods of brain fog, making it impossible to think. Short-term memory loss was a constant issue. One day she told me she felt as if a switch in her body had been turned on, and she felt well and continued to do better. Elyse jokes that she doesn’t remember getting married; the countless vacations we took with the children (two girls from my previous marriage and a boy from her previous marriage) are hard for her to recall. Thank goodness for pictures! It is a travesty that the expanding idea of “autism spectrum disorder” has become a wastebasket diagnosis and an excuse for the medical community to abandon research, treatments, and hope for so many ill patients. At my first talk at the Autism Society of America my wife elbowed me and asked, “Where are the doctors?” While I was a medical doctor and keynote speaker, most of the other speakers were PhDs, and the audience mostly parents. While I was presenting NeuroSPECT scans of the brain, actual pictures of what was going on in the brain of sick children, and offering a medical reason for the dysfunction—a possible disease process, not a developmental disorder—it didn’t seem to matter beyond the walls of the conference! If the medical profession does not address this as a problem to be solved, how will parents and thousands of affected children ever hope for an answer? Children are showing classic symptoms of viral disorders, true encephalopathies, yet these symptoms are ignored because these children are labeled autistic. It is beyond rational.
As a physician, I understand that the previous ideas of developmental learning difficulties (i.e., autism, ADHD, childhood dementias), which were once under the guidance and the control of psychiatry, should be no longer viable. Pediatricians and parents are being faced with a rapidly enlarging medical epidemic. The starting point of research, the starting focus needs to be that of figuring out a true medical epidemic, not of disproving a nonobjective, psychiatry-based “label.” Without this change in focus, years more will be wasted and millions of dollars will continue to be misdirected to nonproductive ends.
So where did it all begin?
In Dr. Leo Kanner’s now-classic 1943 research paper, he outlined the behavior pattern, present from early in life, that he named “early infantile autism.” Prior to this, there were, in the literature, occasional accounts of individual children whose behavior fit 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, 1955). He made no estimates of the numbers in the general population, but he thought that this syndrome was rare.
Later, 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 interpersonal communication; and 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 thirty months.
In the same paper, Kanner and Eisenberg modified the diagnostic criteria by selecting two as essential.
These were
a profound lack of affective contact and
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.
Rates of autism in 1956: 1 child in 10,000.
Rates of autism in 2011: with 1 child in 110 now the official CDC number, most current discussions are using 1 child in 91, with much higher numbers being quoted routinely (1:80 in the military!).
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 threaten 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 according to its “behavioral” features. Needless to say, “behavioral” dysfunction can be caused by many factors, not just the idea of a developmental or psychiatric dysfunction.
Think of it: a general idea noting patterns of behavior held to be true 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). Health professionals have 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. Somehow (mechanism unknown) the brain was miswired; these children were not okay, could not be okay (but with no idea of what was happening, or why or how it happened).
If one goes back and reviews the literature of the 1940s and 1950s, there was no support for or even a discussion of a genetic linkage. I have proposed there is no more evidence of a genetic connection today than the now fully disputed, insulting idea of a “refrigerator mom.”
In the world I trained in, a rapid increase of affected children all showing a similar pattern of behavior 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? The initial diagnosis has just kept expanding and modifying, and all the new children are just being put into a variation of the old basket. Instead of expanding the alphabet soup of autism (PDD, Asperger’s, autistic spectrum, LKS [Landau-Kleffner syndrome], etc.), or likewise ADD (from a hyper, usually intelligent child, we evolved new labels for the different children appearing as mixed ADHD, quiet ADHD, ADD without hyperactivity, and many more), perhaps experts could have said maybe this is not just something we can label autism; maybe this is not the ADHD we were trained to treat. Maybe we have another problem (with some “autistic” or ADHD-like symptoms) occurring. Maybe we need to ask the critical questions: Do these children even fit this label? How many parents (often against their own belief) presently are being told their children have this strange disorder called “autism” (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”? Kanner made a very important distinction, one that perhaps we should all be applying now. He separated a child with this new idea of autism from the child with childhood schizophrenia. Remember that it was all a psychiatric disease; Dr. Kanner’s statement was that a child with autism was “never affectionate.” Now if all we do is apply that one criteria (as we’ve applied the ritualistic behavior criteria exclusively today), 99.99 percent of these children would be classified with an illness, and not as having autism, and that would certainly become a pathway to a more desirable outcome than what we have now.
The precedent is that there has never been an epidemic of any type of genetic or developmental disorder. There are no exceptions. And yet, the vast majority of the researchers in this country, and throughout the world, are still studying these children as if they had some undefined, unknown “d
evelopmental” disorder. Instead of focusing on what can be understood only as a disease (not developmental) process, the system continues to fund researchers trying to figure out and understand “autism” (as a developmental disorder), and an ever-expanding list of connected physical problems.
This is why so little progress has occurred in spite of millions of dollars being spent. Researchers are being funded to study what the vast majority of the children appearing today cannot have. If this process continues, everyone will lose (except the researchers and universities receiving mass amounts of funding as well as the industry of alternative therapists helping to try and treat these “special needs” children).
It is blatantly obvious that 99.99 percent of affected children do not come close to meeting Kanner’s definition of autism. The overwhelming majority of children being diagnosed as “autistic” do not have autism (as the term is understood or used), but rather are exhibiting symptoms of a disease state, a CNS (central nervous system) dysfunction. This dysfunction resembles a true medical encephalopathy, rather than anything called “autism”. Unlike a developmental disorder, this disease is treatable if we act quickly enough. How many of the the existing autism groups are questioning present funding, present efforts? How many are going before Congress protesting that we have a large group of children that if helped, if treated, might grow up to be productive citizens, might pay taxes (rather than requiring more and more social services) one day? Why not?