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IN THE BEGINNING
IN THE EARLY EIGHTIES, I WAS starting to see a shift in the concerns of the patients in my practice. Children were tired. Moms started complaining they couldnât keep up or that they were feeling âspaceyâ or âzoney.â This was troubling, since early in my career I could safely joke that if a mother checked the fine print on her childâs birth certificate, she was not allowed to get sick until the child was at least eighteen years old. I had to stop saying that, since mothers were among the first being hit by what was facetiously being called the âyuppie flu.â Running viral blood titers (measurement of specific viral antibodies in their bloodstream/serum) on these patients was eye-opening. We were taught in medical school you were only supposed to have one active virus at a time, and âoldâ titers were supposed to be present but at low numbers. These patients were presenting with multiple viruses evident. A theory evolved that the immune system was so dysfunctional, it mistakenly thought it was fighting many viruses. How could so many moms and children be walking around and functioning with obvious evidence for some type of a severe autoimmune or viral disorder going on? After a few years, I attended the First International Congress on Chronic Fatigue in 1990 hosted by Dr. Jay Goldstein, who was beginning to define this new illness that had been given the official (but deliberately demeaning) name of Chronic Fatigue Syndrome by the Centers for Disease Control two years earlier in 1988. Dr. Goldstein and other clinicians were using the term postviral fatigue syndrome/chronic fatigue syndrome (the British still use the term MEâmyalgic encephalomyelitis). The CDC made the official criteria/definition in 1988. Several years later, I had the honor of cohosting, and our journey toward understanding began in earnest. At these conferences I met many great doctors, including Dr. Nancy Klimas, who would finally offer some answers. Dr. Klimas sat my wife down and explained the immune system to her. She explained how it worked and, if you pushed the wrong buttons, how it didnât.
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 patientâs 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 HospitalâUCLA). 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 virusesâand I thought the strange viruses in my wifeâs blood might be cured with the proper amino acid treatments. âWhat do you think about amino acid supplements?â Ben looked at me, and he said, âYou know, Michael, we tried to do thatâhelp make a child healthier with amino acid supplementsâbut 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 couldnât get it past the liver.â 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 substancesâthatâs 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 âpatternâ 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 companyâs 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 âdelayed hypersensitivityâ 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 patientâs blood, their brain, or any other primary internal organ. In that way, yeast or candida can be a symptomâevidence of the stress on the bodyâbut 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 âyuppieâ 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 Tomographyâan 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 percentâa key marker for immune dysfunction in children and adults). On NeuroSPECT the âautisticâ childrenâs brains showed abnormalities nearly identical to those of the adults and older children in my practiceâthat is, a temporal lobe hypoprofusion affecting their function and specifically areas of memory, social skills, auditory processing, and languageâall the deficits we mistakenly blame on autism. The results floored me. âWhat does autism have to do with the immune system?â I wondered. I, like everybody else at that time, had not even begun to consider the fact that the symptoms of âautismâ might be caused by an illness. At that time, autism was considered to be a mysterious disorder with no known cause. Since patients seemed âpsychotic,â and it was an era of psychiatry deeply set in Freudian theories (ârefrigerator parentingâ 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. Kannerâs response was, âThe child with autism was never affectionate.â Based on that statement alone, 99.9 percent of the children today would not have âautism,â 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 childânot children mysteriously miswired, congenitally beyond hope of a true recovery (the basis for the concepts we call âautismâ).
When Elyse realized these children had similar viral titers and immune markers as she had, she looked at me almost in tears and said, âIf these children feel even one-tenth as bad as I did, you have to do something!â As an adult, although she hadnât understood what was happening to her body, she had at least known she wasnât normal. But these were children. âMike,â she implored, âthey donât know what âwellâ feels like. They have no basis for comparison. They may not know their brains donât work. They believe this is all there is. There canât be much quality of life.â 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 could 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, âthe world.â 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 âforgetfulnessâ (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 doesnât 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 âautism spectrum disorderâ 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, âWhere are the doctors?â 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 dysfunctionâa possible disease process, not a developmental disorderâit didnât 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 âlabel.â 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 Kannerâs now-classic 1943 research paper, he outlined the behavior pattern, present from early in life, that he named âearly infantile autism.â 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 Kannerâs 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 childâs 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 SĂ©guin 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 âsevere mental dysfunctionâ 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 âbehavioralâ features. Needless to say, âbehavioralâ 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 âbehavioralâ pattern for diagnosis, not one objective or consistent physiologic dysfunction or finding required to prove or disprove this âdisorder/diagnosisâ (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 âsomethingâ 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 ârefrigerator mom.â
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. Whatâs 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, Aspergerâs, 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 âautisticâ 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 âautismâ (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 Kannerâs main criteria: âa profound lack of affective contact and elaborate repetitive, ritualistic behaviorâ? 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. Kannerâs statement was that a child with autism was ânever affectionate.â Now if all we do is apply that one criteria (as weâve 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 âdevelopmentalâ 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 âautismâ (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 conti...