Committee Testimony

Michael J. Goldberg, M.D.,  F.A.A.P.
TELEPHONE (818) 343 - 1010
FAX (818) 343 - 6585
On  the web:
 April 6, 2000 
 I am Dr. Michael Goldberg, a  Fellow of the American Academy of Pediatrics and Director of the non-profit NIDS  Medical Board and Research Institute. I  wish to thank all of you for giving me the opportunity to speak here today and  for taking the time to examine the urgency of this epidemic.
I have put  together a packet of articles detailing my scientific hypothesis and current  treatment philosophy. I suggest they be  included in the record. I have  also provided information on the emerging science and technology  describing Neuro Immune Dysfunction  whose common pathway is involved in many immune or autoimmune diseases  including the development of the Autistic Syndrome. We finally have an understanding of how the  brain interrelates with the endocrine and immune system. We are confident that  we can apply this new understanding rapidly to evolve a treatment plan within  the next six to twelve months, through an unprecedented blend of private  enterprise and government-supported research.
The purpose of this hearing is to  investigate why we have a large increase in this phenomenon that we have called  autism. But to understand that, one must step back and look at the increased  understanding and incidence of auto-immune disorders across-the-board, from the  early/mid 1970, when I completed my medical training, to the present day. All one has to do is look at the medical  literature to realize that nearly every disorder we have associated as immune  connected, immune-mediated, defects in the immune system -  lymphoma, multiple sclerosis, Alzheimers,  lupus, Ulcerative colitis, rheumatoid disease, and even aging - have all become  recognized as in part autoimmune diseases or illnesses where the friendly fire  of our own bodies causes the damage as my colleague Dr. Galpin, an infectious  disease and immunology authority, often is quoted to say.
If we are going to save this  generation of children from a lifetime of suffering the incurable stigma of  being diagnosed with autism and other cognitive delays, we must rapidly realize  that all of these disorders result from a treatable rather than untreatable  disease process. As written in the  enclosed articles, and as a pure basic fact of science, it is medically  impossible to have an epidemic of a genetic or developmental disorder. Further, while many have spoken of an  epidemic of autism, the truth is: the disease process many of these children  have is not autism (as taught to physicians 30 to 40 years ago).
If a child is born developmentally miswired,  damaged, something happened in utero.  But, a child cannot learn to speak and use language and then lose these  abilities if the cause of their disorder is developmental, structural, etc. Such a child cannot respond to treatment and  become a regular child once more, as has been the case in my practice over and  over again, if the cause of their disorder is a fixed process, congenital or  genetic disorder.  It has been repeatedly  apparent that 4, 5, 6 yr. old children  are starting over where they left off at 18 months, 2 years of age.  Parents who were told their children would  never talk, could never be social, could never have feelings, now have children  who are normal functioning or who are still struggling to catch up and get back  to that fully normal functioning child, in either case these parents can see or  are beginning to see a future for their child.  It is my intent and hope in the time I have here, and through the  articles I have submitted, to sow the realization that we are not talking about  saving the next generation of children, but rather that we must focus our  efforts on saving this generation of children before it is too late.  The ramifications are enormous. 
At the end of a research  symposium in October 1997, one which brought together top researchers from  around the country to discuss Alzheimers, adult dementias, social brain, and  Autism/Pervasive Developmental Disorder (PDD), this statement was made: if a  child developed normally during the first twelve, fifteen, eighteen months of  life, developed any language/words, and then somehow went into the autistic  spectrum, it was a 100 percent certainty that the process had to be  immune/viral.  IF a child developed  normally the first 12, 15, 18 months of life and had NO words, 99% it was an  immune / viral process, and no one there could rationalize any other possible mechanism. 
While there is ongoing controversy  regarding past brain biopsy findings and their implications, if any, to this  generation of children, we do have NeuroSPECT Scans, which show reproducible,  quantifiable blood flow in the brain.  Blood flow corresponds directly to function.  When NeuroSPECT Scans of children diagnosed  as autistic/PDD have been correlated with MRI's and CAT Scans, the combination  consistently shows no pre-existing damage to the brain, but rather points toward  an immune shutdown consistent with that found in adults with Chronic Fatigue  Syndromes and other adult dementias and with children diagnosed as quiet ADD and  mixed ADHD.
I stumbled into the field of  autism somewhat by accident.  My wife had  had Chronic Fatigue Syndrome for over ten years.  Jokingly, my son asked me "Why are you  sending Mom all over the country to doctors  Why don't you just fix her?  That  began my journey into clinical research.  It rapidly became apparent we were dealing with some component of the  immune system, an autoimmune like reaction.  During that time, as I was investigating all options for my wife, a few  Autistic children were referred to my practice.  Much to my surprise, these children had blood work comparable to that of my wife and  other adults with this undiagnosed disorder, and to that of children I had been  seeing diagnosed with quiet ADD and mixed ADHD I remember thinking then, What could the immune system have to do with  autism? 
Paralleling this, beginning in the  1980's was the initially slow, now epidemic incidence of disorders in children  labeled as Autism/PDD and the increase of reports of autoimmune diseases in the  animal literature, of altered ecological balance, immune system abnormalities in  various species.  We either have to  assume that this increase of disorders in the human population is mass-hysteria,  mass-psychosis, schizophrenia, and/or behavioral developmental disorders in  children or we must step back and realize that maybe we have a large number of  adults and children suffering from a disease process that is affecting how their  brain and nervous system functions, in ways that physicians had never understood  (or had the technology to understand).  I  have family after family within my new practice in which there is a mother or  father with Chronic Fatigue Syndrome, an older child with ADD/ADHD, and a  younger child or two with Autism/PDD.  As  noted, unless we assume this is all random, there is unfortunately a logical  connection between the above disorders and their rapid emergence as a  crisis. 
We are looking at what appears,  supported by increasing data and reports in the literature, to be auto-immune,  Neuro-immune disorders or what my associates and I have termed Neuro Immune  Dysfunction Syndromes or NIDS.  If you  are an adult with an intelligent, developed brain or an older teenager, when  this process attacks, you will likely end up being diagnosed with the illnesses  known as Chronic Fatigue Syndrome, Adult ADHD, etc. If you are a younger child, five, six, seven,  or eight years old when this process is triggered, with some cognitive, social  and language capabilities already developed, you will likely develop what is  called quiet ADD or mixed ADD.  If you  are twelve, fifteen, eighteen months old, however, when this process begins, you  will have barely begun to develop cognitive, language, and social skills and you  will wind up with what has been called Autism/PDD. 
The good news is that this concept  is supported by common sense 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. 
There is hope.  Research from many prominent institutions  support the idea that the brain is pliable at least into adolescence, maybe into  early adulthood.  It has been my  rewarding experience as a pediatrician to see five, eight, ten, 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 be 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. 
The potential multiple triggers  for this illness, we are calling NIDS, will need many, many years of ongoing  research to learn how multiple factors  such as stress, viral, or environmental 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 now, setting up the possibility of new  therapy approaches in as little as the next 6 – 8 months, rather than after  years of further investigation and study.  Technology exists to help these children and to help many of the adults  out there to become productive individuals again.  At this time, as noted in the enclosed  articles, I have been using a combination of diet elimination, anti-viral  therapy, anti-fungal therapy, and application of low-dose SSRI (Selective  Serotonin Re-uptake Inhibitors), based on our NeuroSPECT findings, immune  markers, and viral titers in these children.  Thankfully, I have had many children return to normal and above-normal  functioning, but this is not yet fast enough, simple enough, or perfect enough.  This may be a holding approach thus far wherein balancing the many neurological  immune regulating proteins known as cytokines and chemokines may in turn  rebalance behavior itself.  As many  others are noting, I would propose there is a future for logical application of  alternative medicines and combination treatment protocols with good  pharmaceutically pure agents and medications. 
In 1996, I was a speaker at the  Autism Society of America Conference.  Approximately 2000 parents and professionals gathered for this  event.  My wife, milling around,  questioned me "Where are the doctors? The M.D's  Sadly she had figured out the truth in a  matter of minutes.  The medical community  had abandoned these children once they became labeled as ""Autistic."  These children were regarded as defective,  mentally un-trainable, even retarded! 

 Sadly, with the label of  autism, many children were not even given a simple blood test for anemia/iron  deficiency (a simply counteracted, possible cause of brain dysfunction).  Reviewing case after case of children labeled  as having Autism/PDD, I am horrified at how little has been done medically for  these children, as they are not considered to be normal.  Their pain, their misery, their "illness,"  goes essentially unrecognized.  Many are  though of as insensitive to pain, but how many are actually just numb to the  pain that their brain/system is constantly in  Simple steps that could be taken, are not taken to help these children or  their parents. 
I have been fortunate to work with Dr  Israel Mena and Dr. Bruce Miller, who helped show through NeuroSPECT Scans, that  these children had a physiological dysfunction going on in their brains.  For the majority, there was a decrease in  blood flow and function of the temporal lobe of the brain consistent with that  predicted by neuro anatomists.  I have  many, many more scans that show the same decrease in blood flow.  I would shudder to think of what dysfunction’s  you might have if your brain had lack of blood flow in those areas.  In fact, if one listens to an adult with  Chronic Fatigue Syndrome, or the "typing" of a child unable speak, one can only  begin to imagine how truly horrible this is.

 Many of these children have a low  number of Natural Killer (NK) cells, which are a more primitive immune system  cell, responsible for clearing radicals in our body, clearing foreign cells /  cancerous cells, and considered a strong marker for a healthy or stressed immune  system.  These cells, when low in  number, are now linked to viral reactivation in many auto-immune illnesses, and  low NK cells has become an extremely strong marker in a subgroup of these  children with NIDS.

 Another frequent finding is the likely presence of an active HHV-6 virus  (a human herpes virus) or other related Herpes viruses in these children.  Similar findings are also being reported for  various adult auto-immune disorders and recently even the Center for Disease  Control published an article focusing on our emerging knowledge of HHV-6 related  disorders. 
The issue of vaccines is an  important one. Again, one must understand the problem in terms of the new  altered immune state (part of the bigger picture), rather than necessarily the  vaccines themselves. Most doctors would agree that not vaccinating in this  country would be a disaster. As I remember the Academy of Pediatrics and the  fights in the 70's over the DPT vaccine, in the end the statistics of children  supposedly damaged by the vaccine were no more then the "natural" incidence in  life or 1 in 300,000.  In fact in England  and Japan, where for a time the DPT vaccine was stopped, the incidence of  pertussis (whooping cough) resulting in serious illness and death, far exceeded  any possible vaccine connection. Likewise, in discussing the current  Autistic / NIDS epidemic, while there may be a possible "triggering" factor  with Rubella, Measles, "multiple" vaccines, one must understand this as only one  of a possible combination of stresses causing dysfunction, within the concept of  a preexisting "immune reactive or "stressed" state. Vaccines (by themselves)  remain an unlikely cause of Autism. 
BUT injecting common sense,  general awareness of health and appropriate "past" considerations of separations  of vaccines, "stresses", choice of age, etc might save untold children potential  reactions/disasters.  Consistent with the  question of whether there is a peculiar or unusual immune reactivity when a  child is younger,
waiting till a child is 3 or 4 could not be faulted, but  with ongoing measles outbreaks occurring at times, it is not something easy to  recommend routinely at this time. Infancy unfortunately represents a child's  most vulnerable time to measles (but there is no real risk from rubella or mumps  at that age). 
Any injury or loss of a child that  could have been prevented remains unacceptable.  There is no way to adequately console the parent of a lost or damaged  child.  If focused correctly, we do  have the ability to accelerate understanding and identification of potentially  higher risk children.  That would help  immensely in considering the risks versus the gains of modifying vaccination  schedules, diet advice, treatment choices, etc.  We must work together with organized medicine and the pharmaceutical  companies as allies to solve these questions, not as adversaries, fighting to  defend principles, which in the end we all believe in. 
It has been my personal experience  within the practice to literally have "high risk" children with "one foot in,  one foot out" of the NIDS disorder, and prevent it from becoming full-blown  Neuro immune dysfunction solely through use of "preventative" pediatrics.  Via dietary elimination’s, selective usage of  antihistamines, "bacteriostatic" antibiotics (when indicated), aggressive  allergy prevention and "health maintenance" providing a simple, preventative  program to a seemingly increasing number of families with high-risk factors for  NIDS.  While only an anecdotal  observation, to date, NO family with whom I have instituted a preventative  program for NIDS has had another "autistic spectrum" disorder  child.

 The bottom line  is that these children have a disease, open to fascinating
research on all  its potential causes and triggers, but one that currently warrants and deserves  immediate medical intervention.  In my  clinical practice, miracles" seem to be happening routinely.  One must realize, recoveries and significant  cognitive improvements could not happen IF these children were truly born  "defective" - thankfully, they were not.  I have an increasing number of children who have been with me 2 or 3  years now and as they return to their regular pediatricians for their annual  checkup, their pediatricians are seeing the children growing better and  developing better, motor, body and brain wise.  In a nice manner, while still not understanding this process (but smiling  at the child they see before them), these pediatricians are advising the parents  to continue therapy, as I continue to monitor medications appropriately. 
A child I began treating at five  is now in sixth grade, getting straight A's, was the Vice-President of his 5th  grade class – not how most people view an autistic child.  I have an increasingly large number of these  children where "academics" are the least of anyone's worries for the child.  Many are in regular if not honors classes and  many are happy, well adjusted, indistinguishable from their peers.  In reality these children are likely just the  opposite of what this country and the world of medicine had come to think of  them: as retarded, unable to develop fully, with some hope of compensation, but  not real treatment or recovery (for one can not recover from a developmental  disorder).  Recovery and improvement in  my patients, as previously mentioned and as explained in the attached articles,  has been accomplished through a combined program of dietary elimination,  anti-virals, anti-fungals, and low dose SSRI's.  I have attempted to do this following good pediatric principles, while  "combining" steps/therapies based on the emerging science of  "Neuro-immune."

" This  past week a mom came in and told me her 5 yr. old child (who has been with me  about 8 months now), said to her, "Mom do you want to pretend I can't talk?  REMEMBER when I couldn't talk?"  We have so misunderstood and misjudged these  children.  What harm are we doing to  these children as a result?

 If we can channel the technology that we have today and employ immune  modulating agents, we could begin objective testing of new therapy protocols in  as little as 6 to 8 months, with one (or more) related agents.  Immune modulators, will give us the tools to  regulate the Neuro-immune system as has never before been possible, help to  create a "normal," essentially healthy state.  A healthy immune system has the potential to "normalize" brain function,  enabling the brain to turn back on and begin developing again. 
If we can focus a unified effort  to identify the specific immune markers (e.g. low natural killer cells, high  alpha interferon, high or low cytokine / chemokine profiles) that will let us  understand which patient is the most likely candidate for which immune agent,  separate this mixed population of children into logical subgroups, allowing  more rapid understanding of vaccine or other potential related factors,  and if we can proceed with the linking of a  country wide, potentially world wide network of NeuroSPECT centers, too our already existing database of NeuroSPECT  scans, the immediate pay-off will be to have a chance at saving this generation  of children.
There is good, solid science in  the NIDS Hypothesis.  It has been  reviewed and verified by at least four pharmaceutical companies to date.  We need to see the urgency of this  situation:  we are already spending approximately 13 billion dollars annually on  Autism and related disorders and this figure is projected to be significantly  more in the near future.  In reality, if  treated young enough, most of these children could still become healthy,  productive members of society, with full, rich lives of their own.  I would dare say, many of these Autistic children are in reality  supposed to be this country "future" leaders, having starting off with that  capability and background, and not as "defective" children (as had been  previously thought). With the reported 263% increased incidence of autism in  California, and a 500% increase in Florida, among other statistics, I cannot  emphasize enough that we are truly losing a generation of children. 
What may have often been presented to you as impossible or  can happen, in reality, can happen, but to occur, we must approach this as  it's never been done before.  In the  normal course of medicine, with multi-million dollars of research, this is a  slow evolution that will take an estimated five, ten years or longer to come  together, to even begin to think of how can we treat this and deal with it.  Within the NIDS Institute, our researchers,  who are all heavily-credentialed, many are involved in current NIH and other  activities and, with the NIDS Hypothesis, there is logic that says we can take  this knowledge, these abilities, unify other researchers in institutions across  the country, using technology, instead of being limited to colleagues or  materials available within a given institution.  We can literally pick-and-choose top people around this country, around  this world to focus on this as the true crisis it has become.  With that ability, we can look at applying  these new therapies, new agents, within the next six months to a year at  most.  Instead of thinking about what are  we going to do for the future, we can change this now. 
  plead  with you, Mr. Chairman and members of this Committee.  These
children are supposed to be a  productive part of our country's future, not a health cost and burden.  These children have the potential for full,  productive, intelligent lives; contrary to the old idea, their genetics are not  the determining factor.  A child can NOT  develop normally, develop some language and lose it all except in a disease  process.  We can apply good sound  science and logic to help solve this crisis NOW.  Unless we act NOW, we will continue to lose  this generation of affected children, and will potentially watch the  "bankrupting" of our current education and social system. Today's ill children  cannot wait for the "normal" path of academic science to catch up (it has begun  to move in the right direction, but all too slowly  We must leap forward in a way/model never  done in medicine before.  I am extremely  fortunate to have three healthy children and one grandchild.  I selfishly want the rest of my future  grandchildren, all of yours and others out there, to have the same chance.
Thank you.
Michael J. Goldberg, M.D.,  F.A.A.P.


Committee on  Government Reform
2157  Rayburn House Office Building
Washington, DC  20515 · (202)  225-5074


[Home] [Articles] [Conference] [NIDS] [What's New] [Presentations] [Links]