The Myth of Autism

by Dr. Michael J. Goldberg, Elyse Goldberg, Dr. Ismael Mena

  The good news is that this concept is supported by commonsense medical logic. The bad news is that we must unify and focus efforts or we will continue to see more adults that are supposed to be paying taxes and earning a living finding themselves on welfare, unable to function, unable to produce. Even graver is that if nothing changes, we are currently raising an entire generation of children to this fate (and worse).

  There is hope. Research from many prominent institutions supports the idea that the brain is pliable at least into adolescence, and early adulthood, possibly even beyond. It has been my rewarding experience as a pediatrician to see five-year-olds, eight-year-olds, ten-year-olds, and even a twelve-year-old boy who could not talk, begin to use language. Parents, who were told their child would never be independent, never able to earn a living, and who one day might have to be placed in an institution, have seen their children become top of their class academically. I have children within the practice scoring in the 97th, even the 99th percentile on California and Illinois state testing.

  We must bring together physicians and pediatric subspecialists, speech pathologists, educational specialists, and “rehab” specialists. While many present “experts” may be “out of work,” there is an immediate need to mobilize and train many experts who know how to help redevelop and redesign programs to mazimize the potential of each of these children. We must make this happen while moving rapidly to improve brain and body functioning for these children, medically, logically, safely.

  The potential multiple triggers for this illness we call NIDS will need many, many years of ongoing research to learn how multiple factors including stress, viral infection, or environmental contaminants may play a role. The key is to focus treatment efforts, rapidly, effectively—now—to keep from losing an entire generation of children while the ultimate “answers” are still being investigated. We can use technology to accurately define “subgroups” of these children and adults. Discussion appearing recently in the pediatric literature that up to 25 percent of neurotypical, “healthy” children have some type of chronic disorder, characterized by allergies, migraines, asthma, and diabetes should be one of those earth-shattering calls to action by our pediatric societies and those involved in many areas with helping parents and their children. Where would we be today if most of us grew up in a society saying 25 percent of “normal” children already had long-term chronic illness. The negative implication socially and medically should be staggering. This should mobilize an immediate call for answers, not just reexploration of theories that have never fully explained or accounted for this now staggering number of children and adolescents.

  Confirming the general ideas linked above, another article that should have increased overall focus and concern was a publication in Pediatrics in October 2008,1 confirming a significant increase of allergic and immune abnormalities in children with complex medical problems. Not psychiatric, not developmental, immune. The report confirmed along with altered immune markers and reactions to cow’s milk and other antigens, these patients often had various gastroesophageal disorders, failure to thrive, sleep disturbances, and recurrent otitis media. The author reported on “a higher than expected prevalence of allergic and immune abnormalities in children with complex medical problems.”

  Perhaps this should lead to an increased urgency to review and look at concepts in this book, open the doors to addressing new ways to perhaps dramatically improve a child’s condition of life, even if the “NIDS” component is not the whole answer or reason for the disorder, it is a potentially treatable aspect today.

  The ideas presented in this book of what should be done in therapy to help a child become healthier, redevelop their abilities, and function is based on this being an illness. It remains unfortunate that the vast majority of the medical and therapeutic world—physicians, therapists, educators—are led to believe, somehow, in a “mysterious” manner, these children are born damaged, somehow miswired, somehow something has gone wrong “developmentally.”

  There is no objective evidence supporting a diagnosis of “autism,” most ideas of “ADHD,” and yet we just assume things are this way. In reality, all objective evidence supports the information being presented in this book, the idea that there is some type of a “complex neuroimmune, complex viral” disease process occurring.

  Therapies have been aimed at trying to help, while focusing mostly on behaviors, control, and all too often “training” a presumably “autistic” child. Automatically, with the recognition of the fact these children are ill, this is not the fastest growing developmental disorder ever, then therapeutically you cannot treat them different, do things to them that you would not do to support or help any other potentially “neurotypically” normal child. The academic world, instead of looking at application of antipsychotics or anticonvulsants, will have to focus on therapies against the disease process itself, other therapies to help these children cognitively. “Alternative medicine” will either have to validate its true safety, efficacy, or it will not be allowed to be done. Many therapists practicing alternative medicine are more than aware of what this would mean. This discussion has tremendous implications for debates about therapy. As much as I may not like it, one can argue if one thinks a child is miswired, brain damaged, then some type of “dog training” is better than nothing at all. If one understands these are not previously damaged children, certainly as soon as you begin to get that glimmer of a brighter brain, one must think of appropriate techniques to rehabilitate that child. As a physician, as a scientist, you debate what comes first, the chicken or the egg? The immune system or virus? It appears over many decades now that immune system dysfunction is going to be the key, and is likely the first area of dysfunction, with viruses secondary, acting opportunistically. It is safe to say that 100 percent of these patients have “neuroimmune dysfunction.” Many more seem to have viral issues now than in the early years of looking at this phenomenon. While this physician’s opinion is that the viruses remain secondary, not the primary reason for this; that statement must be open to new research, the potential discovery of some unknown pathogen, some unknown virus underneath all this. As I was taught in high school, college, and then medical school, we live in a sea of viruses; we are surrounded by viruses with which we have learned how to coexist in an equilibrium; but when we become ill, when our immune systems are not there to protect us fully, these viruses can become significant pathogens. Note: This concept is perhaps best illustrated by the original sci-fi classic War of the Worlds. In the book, in the terrifying radio broadcast of 1939, what stopped the Martian invaders? The common cold virus. With no build in immunity, the lesson was, even the common cold could kill you. A true statement! Almost like the Martians, are our children being undone and our society eventually toppled by in this case a combination of microorganisms, and our now stressed, dysfunctional immune systems? Under the frequent misdirection of psychiatry, our sophistication but complete lack of recognition of the real problem is leaving us all open, our children most vulnerable, to this debilitating, potentially life-threatening process. We are not controlling a potential attack of pathogens we lived with for thousands of years, and by mistake our own immune systems think “we’re a foreign organism—a Martian.” I believe that if we focus on the right things, we have the resources and the ability to fight back and win this battle. Before it’s too late, please join in.

  In Summary

  With the bleak prospects for a child diagnosed with autism perpetuated by academics and alternative medicine, one cannot blame a parent for being encouraged by any glimmer of hope. Many of the remedies are likely to cause harm over time, and perhaps that is why so few children maintain what is at times considered good progress to begin with. In terms of “autism” expectations are kept low; in terms of the reality of an “illness” parents should have a right to have high expectations. No longer could “academics” or “alternative” medicine prescribe pharmaceutical agents or supplements, or recommend procedures that wil
l likely cause long-term harm to a potentially normal child or child’s brain.

  All of the connections and family relationships do not make sense in any simple terms of genetics or developmental, but rather, only in the context of a slowly expanding, medical epidemic. This epidemic is acting in an insidious manner, unlike what most epidemiologists or medical professionals are taught to think about when it comes to infectious disease, much less any remote idea of an “immune related” epidemic.

  These children present with a symptomatology consisting primarily of severe speech and language development (left temporal lobe) and severe social difficulties (right temporal lobe), often some fine, not usually gross, motor difficulties (cerebellar involvement), and various learning difficulties and attention deficit dysfunctions consistent with involvement of frontal and temporal lobes, and sometimes its links to areas of parietal-occipital dysfunction.

  They may also have many symptoms consistent with OCD and ADHD characteristics, associated with these areas of dysfunction.

  As noted, in adolescents and adults, this dysfunction may manifest itself as CFIDS (chronic fatigue immune dysfunction syndrome), ADHD “variants,” and various other atypical autoimmune disorders associated with neuroimmune dysfunction. In older children, it is seen as variants of ADD (attention deficit disorder)/ADHD. And in younger children/ infants, it appears as autism/ autistic syndrome/PDD. If we continue to ignore the now-obvious connection and the bigger picture, what will happen to our society, economic, and social system ultimately around the world (already in a state of stress, needless to say). When at least 25 percent of neurotypical children have chronic illnesses (including diabetes, obesity, allergies, migraines, asthma)—what is going to happen as these children grow up? I have never been exposed to any teaching in college or medical school that says our society, or any society, can handle that many citizens with chronic illness/disease. I cannot conceive of going into pediatric training and being told that 25 percent of my patients were going to be chronically ill (and that I couldn’t change that!).

  Since the “system” has not woken up (or is waking up as slowly as it can), the issue facing many readers of this book, all parents out there, is what can be done now, what can be done to change the future for their child maybe tomorrow, not in another decade or longer. Parents must come together as they have not done before.

  It has become obvious that over the years, many errors, misdirections in research have occurred, but looking back, the mistakes have occurred in spite of good intentions by contributors and parents. We all grew up, and I was trained with a strong belief in our “ivory towers.” As echoed in the Hollywood community, in theory this was the era in which “there was no disease we couldn’t solve with enough funding.” It is obvious to me and to many frantic parents by now that our “ivory towers,” the main medical focus led by psychiatrists (as noted, these disorders as defined decades ago were not considered to have primary medical issues/problems), and all the money to date, have not remotely helped solve the real crisis, a true medical crisis facing these children and adults. The situation is so bad, so controlled, that I have been told multiple times that in major institutions, if you want to study developmental or genetics, you will likely be funded (look at all the money raised, and added to this system by congress and private support groups), but if you want to study immune or viral, not only should you not expect funding, but you may be reprimanded (bad judgment if not a very high up researcher) or even let go. Somehow, that does not resemble the medical or academic world I was exposed to or have believed in.

  A second major point of misdirections and lack of focus for parents is living in a world where the Internet is fact. While misstatements, misinterpretations, and outright lies apply to all fields and all areas of information discussed on the Internet, this has had a particulary devastating affect within the field of medicine, where parents want to believe what they read (but while how to dissect, understand a medical article is part of Medical School 101—it is not part of basic training for parents or patients.) In the past (i.e., polio, measles, or other serious childhood illness), when multiple children were being hit by an illness, when parents were living under constant threat of a serious illness affecting their children, they became a part of the solution by demanding mobilization of the medical and pharmaceutical world to help their children fight these terrifying epidemics. Today, parents frustrated about a lack of scientific evidence, tests, and research, and who are desperate to help their children, are embracing “alternative” medicine which offers glimpses of improvement (based on multiple anecdotal, completely noncontrolled reports on the Internet). The “alternative” medicine system has been so vocal, but often so misdirected, that their ongoing distribution of proposed mechanisms and ideas (some possible, most not), have only helped misdirect a system already starting from a confused, dysfunctional place. As a pediatrician trained to review data and controlled studies, I have yet to see a controlled trial of any kind validating what is being proposed by most alternative medicine physicians (beyond parent or internet support), and worse, after fifteen-plus years—where are the long-term success stories from these other ideas or protocols? This author continues to remain skeptical of any therapy or claims that do not begin with clinical and physiologic logic, real potential efficacy or safety based on the real pathophysiology of these disorders.

  With the obvious neuroimmune linkages to Alzheimer’s, Parkinson’s, and schizophrenia (and likely many other adult and child dementias), how can we continue to ignore a major pathway that could help so many patients? By studying each of these areas as their own problem, we are opening missing a major direction that not only will likely unify a large group of these patients, especially those that are called “atypical,” but also could lead rapidly to new approaches of therapy, likely far more successful than what’s been done for decades, for many suffering today. We have evolved to a system that is so specialized, so focused on minutia, that we have lost sight of the bigger picture, the potential bigger connection. Research goes on in the United States, Europe continuing to focus on variations of rheumatoid diseases, variations of autism and autism spectrum, variations of ADHD, and other learning disorders, variants of lupus, Alzheimer’s, MS, and other related autoimmune disorders, the list goes on and on.

  What if there are so many variants of each of these disorders because many of the variants and classic presentations are really part of a bigger picture, a bigger disease pathway of “complex neuroimmune, complex viral diseases.”

  As illustrated by the slow progress for so many of these chronic disorders, if we wait till we understand every fine detail of each dysfunction, if we wait for the “holy grail” (the ability to engineer enough genes that we might alter or change some of these disorders), we are going to continue to fail these patients and their families. The current rates of illness (1:110 children with autism, 1:10 children with ADHD) could conceivably put such strain on government systems and our healthy population as to cause a collapse of society (leaving behind many wealthy researchers, institutes, alternative medicine clinics, and therapists).