The Myth of Autism

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

  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 and families with this undefined, unexplained disorder, few physicians, parents, or politicians expect these children could ever recover or regain regular function. The myth of autism is perpetuating many dangerous or partially successful therapies, with some success (often with large risks) being better than nothing.

  What bothers me is the autistic child who spends the day at a special school with five to ten other children and copies their bad behaviors rather than learning from a normal child.

  What if physicians and therapists expected a child to recover and focused on finding answers to fix this now, for this generation of children, rather than accepting any degree of minute improvement as wonderful? What if we could bring the children and parents of this generation back to the field of pediatrics that existed when I trained?

  It has become obvious that neuroimmune and/or chronic viral connections are the only possible cause, the only proposed mechanisms that have no scientific contradictions and an ever-enlarging compendium of articles in support. While many will pose the question “Where are the controlled studies?” every medical fact and recent discovery helps substantiate the likelihood of an autoimmune, neuroimmune-related process.

  We are presently at a crossroads. Are we going to continue to blindly follow old logic, old thinking with no consistent physiologic dysfunction measurable or 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 to fight a disease (NIDS, or whatever name is eventually used) remains buried under the wall of controlled misinformation. This is now obviously a medical crisis, a true medical epidemic that should no longer be under the supervision of psychiatry, but should be relocated to the realm of pediatric infectious disease, pediatric immunology, and a medically focused pediatric neurology.

  Unless we all step up now to change this, to demand clinical science and logic, not mythology, the system could easily take another ten to fifteen years (or longer) to come around to the right answers. How many are ready to step up and say, “Enough is enough”? How many millions of dollars have been spent (particularly in the last six to seven years) with no answers and without any new hope?

  The NIDS effort was formed to help look at this crisis appropriately, scientifically, logically, and medically. Many parents are working hard to help make a real future for their children. (Visit their site @ www.NIDS.net.)

  At an NIH-sponsored conference many years ago (1996), presenting my preliminary NeuroSPECT work with Dr. Ismael Mena and Dr. Bruce Miller, before a room full of high-level researchers, including many Nobel laureates, I expressed cautiously (expecting resistance to this idea) that if this process hits you as an adult, you get CFS or the new idea of adult ADHD. If it hits you as a teenager or older child, you get ADD/ADHD variants or CFS/ CFIDS. But if this process hits you as a young child, with an immature brain an immature immune system, you get autism/PDD. They did not laugh (or ban me from future conferences), and, two years later, at the next conference many were coming up to express their agreement. As that was 1998, it remains a sad mystery to me today why more money and more resources have not been allocated to a medical investigation of “autism.”

  It is my fervent hope that in the near future the existence of an immune dysfunctional/dysregulatory state will be commonly accepted, whether the patient exhibits fatigue or not. Perhaps we will come to recognize that an immune dysregulatory state is a generalized condition that may include many interrelated phenomena, such as CFS/CFIDS, atypical and/or typical rheumatoid disease, most if not nearly all of autism, and parts of ADHD, as well as other learning disabilities. It seems probable that this disease has an element of genetic predisposition (confirmed in emerging epidemiologic studies). In following a number of families in my practice, I have found that not all members of the same family become ill. Often one child and/or one parent alone is affected. This likely implies a lack of ongoing contagion, if any, associated with this syndrome, suggesting genetic predisposition with probable multiple triggering agents or events. These can include viruses, a combination of stresses, or various traumas, setting off a state in the body in which the immune system, the CNS, or both do not come back to a normal functioning level. As supported by many peer-reviewed papers, once this process is in motion it is controlled by the innate immune system, not the initiating stress or stressors (or any kind of a simple genetic chromosomal defect).

  The social-educational-economic implications of all of this are terrifying. We are running out of money and bankrupting educational systems to deal with the epidemic of special-needs children. I have nothing but respect (and sympathy) for teachers, who are on the front lines, being asked to do their best to educate a growing number of affected children. With all the studies on all the possible reasons for this, how many have thought of looking at the bigger picture? These children are all points on a bell curve. Rather than just exhibiting multiple variants of learning difficulties, put under different labels, these children really are ill and have part of their brains not working. How much more successful would these teachers be, how much could we begin to dream of lowering education costs, at minimum being far more effective for all students, if we recognized that, as physicians and parents, we have an obligation to send children to school alert and healthy? Whatever the combination of factors, once in motion, there is likely a medically definable problem that can be treated. We must stop assuming these children’s function is carved in stone, determined in some mysterious way genetically, developmentally.

  I continue to believe awareness and recognition of the true medical crisis being discussed in this book will mean parents and children receive more help, but help focused and dedicated in the right direction. For, if helped, with children’s body and brains made healthy, the system will not only smile at its success but also save hundreds of millions (at this point likely hundreds of billions) of dollars in now unneeded expenses.

  2

  HOW CAN THIS BE ANYTHING BUT AN ILLNESS?

  Graphs produced by Anthony E. Vizioli

  UNLIKE DOWN SYNDROME, FRAGILE X, AND other common childhood disorders that have a genetic link, can be evident at birth, and whose rates have remained stable in the last fifty years, autism rates are increasing rapidly across the globe, affecting childhood populations in numbers similar to medical epidemics of the past like the Spanish flu and the bubonic plague. This disease affects children after they are born. It is acquired, like other illnesses. Based on early clinical work and reports, linked by the emerging NeuroSPECT results (the use of a low-dose radioisotope and imaging to measure blood flow, which defines function in areas of the brain), I and a few other physicians coined the term NIDS (Neuro Immune Dysfunction Syndromes) as a way to try to create a medical umbrella over the previously developmental categories of ADHD, autism, and other now likely immune medicated (a CNS system, neuroimmune-created dysfunction in key areas of the brain) learning or cognitive disorders. The NIDS hypothesis was first discussed in early 2000, and found wide agreement with no scientific debate or dispute by researchers and pharmaceutical representatives who read it. It just made sense.

  Under the umbrella of NIDS, the multiple secondary metabolic, physiologic, and immune markers that are abnormal in these children make sense. The “new” family constellation presenting to many physicians begins to make sense. Representing nothing I was ever taught about in medical school, internship, or residency, there was now a newly emerging family constellation of a mother or father with CFS/CFIDS or “other” immune mediated disorder, an older child (or two) with an ADHD variant (or other learning
disorder), and a younger child (or two) with autism or PDD. This pattern is impossible for a developmental or genetic disorder. It is the logical result of a complex neuroimmune, complex viral connection with NIDS.

  Let’s go back to the symptoms and forget the label. If we remove the diagnosis of autism and simply look at the symptoms, we see a variety of common factors. Typical medical histories include immune-related issues of eczema, hives, or other allergic issues, along with recurrent ear infections, frequent sore throats, and flulike illnesses.

  Confusing for many parents and health professionals is the fact that many “normal” children will typically also experience recurrent infections, recurrent ear infections, a stressed delivery, and recurrent allergies and not fall into this complex disorder (NIDS). The logic is simple when one understands that most normal children in the past were not born under already-stressed circumstances (many adults and children now have activated immune systems compared to the normal baselines of four or five decades ago), and then depending upon the combination and number of stressors, while most of them will manage to recover and come back to an acceptable baseline; an enlarging group of infants and children are being pushed over the edge into this complex neuroimmune, then complex viral dysfunctional state. It is interesting that as with a “normal” child, some of these children, probably dependent upon their allergy responses, have a history of recurrent congestion and then recurrent infections, while some (usually those without the congestion issues or in whom the triggers for congestion have been removed) will generally seem to stay healthy and not present with recurrent ear, sinus, or chest infections. My overwhelming experience for years with a large “normal” pediatric practice (in which some children were prone to allergies) was in how to keep a child clear, and how to avoid recurrent congestion/infections.

  Common symptoms of neurological dysfunction (rather than a psychologically based disorder) include trouble concentrating that can be described as “spacey” or “zoney;” a sensory, auditory, or vestibular processing difficulty; “executive dysfunction”; sleep difficulties or an abnormal sleep cycle; and fine or gross motor abnormalities. As noted elsewhere, these findings, particularly the fine and gross motor issues, become markers for the likelihood of a virus occurring. If one goes back to the autism literature of the 1940s and 1950s, there is no mention of fine or gross motor issues.

  The presence of the above symptoms should demand a medical focus and a medical evaluation. We can no longer continue to ignore or discredit it. If we remove the label called autism and again focus on the patient, the child, we can begin to deal with symptoms that without the hysteria, without the misconceptions of “autism,” would be regarded as a true medical crisis.

  How We Got Here

  Unfortunately, without the tools or the technology to accurately investigate the human brain, the label of autism evolved from the observation of a set of symptoms in a dysfunctional child. In its most severe form (“classic autism”), effective speech was absent, and clinicians often saw symptoms of repetitive, highly unusual aggressive and sometimes self-injurious behavior. Those afflicted had extremely abnormal ways of relating to people, objects, or events. Parents noticed that something was “not right,” often within the first three to six months of life. These children typically did not smile and often resisted affection.

  Most researchers and clinicians did not look for medical answers to autism (likewise ADD/ADHD and most childhood learning or psychological disorders) because they believed it was a disorder that was medically untreatable. Without the technology to understand these children, pediatricians and pediatric psychologists accepted the concepts of poor parenting or childhood psychosis/schizophrenia and classified autism as a psychological and/or developmental disorder. Psychologists and psychiatrists typically delivered treatment.

  In accordance with this premise, recent discussions have focused on the difference between “congenital autism” (including “classic” Kanner autism) and another form related to neurologic and medical disorders such as tuberous sclerosis, phenylketonuria, congenital rubella, and Down syndrome. However, a third form has emerged that is being referred to as “acquired or regressive autism” (perhaps the largest subgroup of these children). For purposes of this book, acquired autism is a condition in which the child develops normally for the first twelve to eighteen months of life and then regresses into the increasingly wide spectrum of autistic disorders.

  These children challenge the previous belief that 70 to 80 percent of autistic children are mentally challenged. They crawl, sit up, walk, and usually attain normal motor milestones on schedule. Until the age of symptom onset, they are affectionate (which rules out Dr. Kanner’s definition) and appear to have above-average intelligence. Children with acquired autism may begin to develop some speech but then, without warning, cease to progress or begin to regress. Suddenly, these children become withdrawn. They vacillate between being quiet and hyperactive. Often self-stimulatory behaviors (e.g., arm flapping, rocking, spinning, or head banging) may develop. Over time, some manifest symptoms that are both similar to and atypical of those of children previously diagnosed as having congenital autism. I propose that many of these children with acquired autism fall into this medical category of NIDS (neuroimmune dysfunction syndromes), and need to be viewed as suffering from an autoimmune medical illness that is potentially treatable.

  Understanding, Insight Emerges

  To understand how we got here, one has to understand the history. In the early 1970s the human brain was still mainly a black box. There were sophisticated, indirect studies to determine areas of anatomical functions, but the objective data was still essentially nonexistent. We had CAT scans (computed axial tomography) and eventually MRIs (magnetic resonance imaging) capable of illustrating damage, tumors, possible AV (arteriovenous) malformations—essentially what we think of as “structural.” There was very little understanding as to the cause of any brain dysfucntion. In fact, in the field of psychiatry, it was generally accepted there was no real objective data, and a whole system of labels and the classification of mental dysfunctions evolved based on symptoms—no one imagined that we’d eventually be able to “look” at how that brain was working or not working.

  While specific knowledge was weak (opening up the door to a world classifying many of these disorders, condemning children to a presumed life-term dysfunction, with an absence of objective data), if something was going to go wrong, there were only certain ways that could happen. These children started off with presumed normal brains and normal skulls anatomically; the possible causes of dysfunction are limited.

  The possible mechanisms are

  a structural defect and

  a congenital/developmental malformation, a chromosome abnormality, an AV or vascular malformation, an injury, a neoplasm/tumor, or a primary metabolic process.

  Over many years of study it has been found that none of these possible mechanisms (including any idea of simple genetic or chromosomal defect) is in effect in these children (or adults with these related disorders). The only possibility that remains is that the brain can become dysfunctional by infectious (viral, bacterial, other agents) and immunologic mechanisms. Herpes viruses in particular like to go to the temporal lobe of the brain and are known to cause seizures. Our knowledge of neuroimmune, ultimately complex viral interactions has blossomed because of the appearance of HIV. Short of the indefinable expansion of previous psychiatric-based disorders, one inevitably begins to focus on complex immune and viral mechanisms; that might be a far more reasonable and far more logical explanation than psychiatric/undetectable “developmental” disorders mysteriously present from birth.

  The body has different “systems.” These include endocrine, immune, hematology, EENT (ear, eye, nose, throat), cardiovascular, pulmonary, GI (gastrointestinal), GU (genital-urinary), muscular-skeletal, and neurological. Within those systems, only certain disease mechanisms can occur. These are metabolic-toxic, genetic/developmental, infectious, imm
unologic, and tumor-trauma-insult. Looking at these systems, it is obvious by now, while there may be dysfunctions within different body system, the only systems key to the pathophysiology of all this dysfunction/illness are the immunologic and infectious systems. Unless nature and physiology have changed, it’s time to focus on reality, science, logic, and a cure.

  While in an “ivory tower” medical school—UCLA—I was also thankful upon reflection that I was exposed to the early evolution and understanding of what we called collagen-vascular disorders—things like lupus, scleroderma, and other disorders we now think of as autoimmune diseases. Since we had limited knowledge of our immune system and its complexities, retrospectively it is not a surprise that many markers were not consistently diagnostic or validated as causational. However with ANA and other markers (including abnormal changes in viral titers), we approached patients with an understanding that they could have a potentially serious medical illness.

  When I graduated from medical school, the presence of an abnormal immunoglobulin IgM, particularly when elevated, was reason to work up someone for an occult lymphoma or other cancer. Now it is often ignored instead of at least being interpreted as an immune system dysfunction. The cause may not be obvious, but giving these tests as a precaution is a far better, anticipatory, preventative approach than our present system.

  When I graduated from medical school, if a young adult developed shingles, (chicken pox reactivation), you would work them up for likelihood of a serious illness, including an occult cancer or leukemia. The reason was that for a young adult to break out in shingles was considered a very serious sign of a stressed immune system. Children, teenagers, and many young adults have this happen now, and are not urgently investigated for a serious illness. Why?