J. Goldberg, M.D., F.A.A.P.
5620 Wilbur Avenue, Suite 318
Tarzana, CA 91356
Telephone (818) 343-1010
Fax (818) 343-6585
the Web: www.neuroimmunedr.com
ADHD / ADD – Learning Disabilities
CFS / CFIDS
Autism / PDD
Spectrum Disorder I KIDS Into the New Millennium: Science
NOT be due to a developmental or genetic disorder
*ONE MUST have a disease process at work.
The ONLY possible CAUSE for this type of disorder / dysfunction
has become immune and / or viral in origin.
This was apparent as far back as a major research symposium October
1997 since then basic science keeps supporting "neuro
immune" as the only logical pathway for most l all of these
The NIDS hypothesis has been validated by multiple reviewers to
date. This IS not a metabolic disorder in origin therefore metabolic
"findings" are secondary not primary factors.
Vaccines may be possible "triggers" but they are NOT
the cause of this disorder I epidemic. There is too much data
over decades supporting the lack of "causation." But,
action as a potential "trigger" is open to scientific
investigation (in some cases).
New agents, working directly on the "neuro-immune" pathways
(safest manner for children and adults) are possible now. Not
by waiting for the science of "Autism" to catch up,
but by applying to these children now what has thankfully been
evolving "scientifically" in other fields to date.
As trials are about to get underway with new immune modulators
for adults, we have a chance to help see children evaluated along
with the adults, rather than years after. This has NEVER happened
before, but can happen NOW, this year. BUT, as I have written
and discussed, as has always true, NO Company is going to "gamble"
all investing potentially millions in new drug protocols, especially
with children, UNLESS there is a hard, scientific process to make
possible very "objective" data, for the FDA, etc., Thanks
to the expertise represented in the NIDS Medical Board, this is
As new information
emerges strengthening our understanding of the "neuro-immune
system" and its influences, regulatory responses, feedback
loops, etc., it has become logical and undeniable that this will
ultimately be the route to understanding the key dysfunction in
tie children being labeled "Autistic Spectrum" (and
many other cognitive dysfunctional states in children and adults).
The only question is, will it be applied to help children now,
or will the children (and their families) have to "wait"
many more years till the "system" is ready. Unfortunately,
under the normal evolution of science (even accelerated), our
"system" is still many years away before thinking agents
like this would be "ready" to be investigated "knowledgeably"
in these children. ONE day that will happen, it is inevitable,
it has only become a question of how soon. Why not NOW?
sadly depending upon what happens), the NIDS Board can help make
this change and happen now, but continues to wait for funding
and support to move ahead. The NIDS Board represents researches
that have already been working in the field 'of "Neuro-immune"
for the last 15 - 20 years, and together with the rapid application
of . solid science represent a chance to "leap frog"
the "system" for your children. So, as we enter the
new millennium, what's wrong?
At a recent
research meeting I attended, it became obvious that we need to
be able to reach out to groups like the American Academy of Pediatrics,
hopefully help them Wake up to the gravity of the situation, and
then be able to get their support (and other groups in organized
medicine) to deal with this as the crisis, the grave epidemic
it has surely become. But instead we lose chances for their support,
alienate them by "unscientific" allegations, and "convoluted"
hypothesis being currently proposed by many autistic "experts."
Do we want to spend years fighting "battles" that needn't
be, that in the end are not going to be the "big picture"
anyway. (Note: at this "mainstream" pediatric update
conference were discussions of the "expanding" role
of HHV6 disease in children and discussion about an "allergic
-- autoimmune encephalitis," topics that would never have
been discussed even a few years ago.) In the coming years, there
are going to be many fascinating "side" connections,
new information and details to define, but the key now, is to
focus on "therapy application," build upon what makes
sense now, while we pursue these further details, not while we
fight over them (due to many "false' accusations or assumptions),
or prepare to study them (many good researchers are beginning
to pursue many of the "pieces" of this puzzle), but
would still wait to apply therapy till WE "understand"
We need to
focus behind the NIDS Medical Research Board as a path to trials
with new agents within the next 6 - 8 months, not 10 years. Unfortunately.
IF this fails, then it may well be 10 years or longer (the number
used at recent conference) before any significant new safe, "directed"
therapeutic approach is possible. If we start from "scratch"
then that time course is certainly realistic. The "autistic"
field is still scattered in many directions, unfortunately increasingly
chasing ideas that will likely be dead ends, or "pieces"
of the truth, but not attacking the "big picture." Why
is that true? With the rapid acceptance that has become an "epidemic,"
science says you cannot have an epidemic of any type of developmental
or congenital disorder, it is IMPOSSIBLE, it has become Illogical?
Therefore, any researcher currently looking and submitting research
projects based on "Autism - a developmental disorder"
is not looking at What is really happening in a vast majority
/ ?? all the children being labeled "Autistic Spectrum Disorder."
This no longer makes any sense.
additional huge implications from the statement, "this IS
a disease" (NOT a Developmental disorder, a congenitally
"miswired" brain, etc.)
means these children were born with normally functioning brains
that became dysfunctional. That means they can be fixed, in theory
they can work normally, again.
i. You cannot
"fix" I recover from a developmental disorder, you can
from a disease. / This has profound implications in light of the
work from leading institutions showing the brain is more pliable
than we thought (implying late redevelopment is still possible)
and the importance of early, correct laying down of pathways /
tracts - as the brain evolves and develops.
ii. WE need
to focus on the idea of "redeveloping" a child's brain,
not "training" an "autistic" brain
are told there children can never fully "recover," -
as a disease, we must expect recovery, hopefully be able to one
day use the word "cure."
2. An educator
or child development specialist looking at these children, must
understand the concept of a "dysfunctional, but potentially
normal brain" if they are truly going to be able to look
at how to maximize each child's development.
1. I have
personally been appalled over the last few years at the lack of
expertise in the "autistic" field available to truly
help parents redevelop, reeducate their child's brain. I am sure
these specialists exist, but in general they have not been in
the circles accessible to parents at present, OR have not looked
upon these children for what they really are.
i. To listen
to an educational therapist who truly understands how to assess
and work with the various "highs and lows" in how these
children's brains are working, is impressive; much less a speech
pathologist who understand the apraxia, and how to work with the
oral motor dysfunction dominating these children (when you stop
thinking of them as "autistic").
the "old" ideas of NOT expecting speech development
past?? 5 or 6 years old, this means older children (10 - 14 years
old / clinical experience to date), can be helped to redevelop
i. When looked
upon as a disease, this should be expected, not hoped for or discounted
it has become apparent that one must treat these children age
appropriate for where they are psycho socially, not chronologically,
not as "retarded."
1. With the
realization that most of these children are truly intelligent.
i. Much of
the negative behaviors seen, are because these children are not
"disciplined" as one would discipline a normal 2, 4,
6 years old child (again where is the child psycho socially, not
current "calendar" age) or are outright miserable, in
pain, frustrated, angry, and NEVER looked at or truly understood
in that way
One day we
are all going to realize what a true tragedy this has become.
How many I most of these children are "miserable" I
physically suffering. If it's going to happen (and every scientific
pathway is toward neuro-immune, an understanding of this as a
disease) one day, why not NOW (before many more children are truly
not recoverable). Unfortunately, "problems" continue
to exist, which are working to slow down the rapidly needed change
for;- all the children and families out there:
1. As illustrated
above, every "assumption" made not based on good, solid
medical science only serves to mobilize "academic" medicine
against these efforts, instead of helping correctly focus on this
crisis (and potential real solutions).
2. Many current
efforts report "improvements" / "success"
many "remedies" can create some "success"
IF graded in terms of their child starting off "autistic,"
metabolically dysfunctional, etc. - but these "success"
stories in general do not come close to a real "normalization"
of an "ill" child ii. Again, sights, expectations, measurements
of "success" are changed dramatically if one recognizes
the disease process going on here (scientific), not the old idea
of a developmental disorder, developmentally mis-wired brain (now
3. Since this
is not starting as a developmental or metabolic disorder (immune
/ viral are the only possible "causation" pathways scientifically),
then treatment metabolically may help, but does not have the potential
to truly fix this type of dysfunction
a. IF thought
of as a disease, then again, the bar of judging success (AND safety;
b. You only
beat, solve, potentially cure a disease by treating the etiology
/ causation, NOT the after effects
a. Yes, it,
has now come up in many discussions that one of the reasons for
the failure to focus and mobilize quicker around the NIDS effort,
is the fear of all the promised answers before, the false hopes
of the past. I have had parents discuss the "pain" of
having to "again" reevaluate a child's life, expectations,
problems, "knowing" higher goals are possible / realistic,
NOT impossible. but still sc. difficult to obtain. iii. Unlike
any effort in the past, the NIDS effort is based on science, new
information, new technologies
1. While l
can be pointed to merely as another "clinician," the
NIDS medical board is composed of researchers who are leaders
in their fields, who would never gamble their reputation or prestige
on doing any study that was not based on hard, good, science and
a. As noted
above, the NIDS hypothesis has been validated by every pharmaceutical
company that has reviewed it to date.
2. At this
point in time, unfortunately, it is far more likely parents are
one day going to be very upset for "believing" the current
Autistic efforts, and at those groups / leaders for not "focusing"
on neuro-immune faster, or recognizing its role I place, rather
than those who have begun to follow a NIDS direction
a. This is
SCIENCE, this is becoming / will become reality
So how do
we make this change?
must focus around the NIDS effort that we can overcome, bypass
the unfortunate "opposition" / negative momentum to
change that exists presently This is finally possible, but as
noted above, will not happen without effort, help and support
for the NIDS Medical Board.
goals are met (a total business package of - $750,000 - see www.nids.net
for more information ) there is a standing commitment for at least
one (optimistically more; company with an immune modulator, to
initiate trials for the children in a maximum of 6 - 8 months
(from when the money is in place, and the network begins to come
together) c This is an unheard of opportunity for all the children
out there, but will not occur without successful implementation
of the NIDS Business plan, and support for the KIDS Medical Research
must demand, insist that any significant allocation of funding,
etc. be based on the "disease" state occurring, and
focus funding on researchers beginning to look that direction,
not still pursuing the old ideas of a developmental disorder
opportunity is possible as we enter the new millennium, IF we
can "focus" upon a radically different, but now scientifically
logical approach for the children, rather than continue to pursue
old ideas, that no longer hold scientific logic. Changes can occur
quickly. While I have said and written "patients, parents,
have never before truly changed the course of medical therapy,"
that can be made to happen now. Through application of solid,
good science, but via the connection (thanks to technology) of
outstanding, leading researchers (not limited to one university
set of connections), we enter the new millennium with a chance
to truly radically, make this change happen, succeed now-. As
noted many times, the formation of the NIDS Medical Board was
done to assure all of you by the level of researchers involved,
that there will truly be a scientific level that will be appropriate,
unchallengeable, but accelerated clinically in favor of your children.
at this point is purely up to those of you able to read this (sadly,
many organizations and groups continue to resist posting or presenting
information, facts, that do not fit what they want their supporters,
members to hear). There are NO medical or logistical obstacles
(short of adequate funding and finding the appropriate research
assistants, staffing, etc.) stopping this from occurring in the
next 6 - 8 months, BUT if many parents remain unaware of this
option, or continue to be told "it can't occur," when
in reality (as presented at the NIDS conference Bethesda, June
1999) this can occur, it truly will not just happen '. (this is
not how the "system" normally works). This STILL represents
a major jump in academic focus and assumptions. It will not just
happen by wishing or by itself (this is not the "natural"
evolution of medicine), but with support, help, it CAN occur.
With it will hopefully come the increased focus by new therapists
with an understanding of rehabilitation in children, and a change
in focus by existing therapists and the education system, such
that we truly begin to understand how to maximize a child's development
and potential, not hope to "train" a child with Autism
(remember: you can't cure / fix a developmental disorder, but
you can a "disease" state!) As another parent recently
noted, a child with "Autism" is not suppose to be able
to recover, develop "functions" they are not suppose
to have, rather one tries to compensate and work with the dysfunctions.
A child with a disease can be treated and expected to recover,
especially if caught early enough, before the "disease"
state can create permanent damage or injury.
In the past
I had been told don't give false hope to parents. Perhaps, as
has been expressed, it remains that fear (played upon by many
old organizations), skepticism, that will keep this effort from
achieving the support it needs. IF that happens, that will truly
be a major crime, recognized 5 -10 years from now). Again, focusing
on SCIENCE, (not false promises, convoluted explanations or ideas),
science now says this does make sense. There is reason for all
of you to have hope, NOW, as we enter the new millennium.
So, with increased
hope for the year 2000 - this can be made to happen
Parents have asked what to do if "friends" or others
wish to support the NIDS effort. The NIDS Research Institute is
fully "nonprofit" / tax exempt. Donations can be made
out to "KIDS Medical Board & Research Institute"
and sent in care of my office or sent to KIDS c/o MAT @a P.O.Box
5938, Glen Allen,; Virginia, 230582. Helping in any way to spread
the awareness of this effort, the science of the NIDS hypothesis,
the boards efforts, etc. will all help-in overcoming the last
barriers, the last obstacles to making this finally happen.
has been discussed recently, this effort is meant to represent
an enlarging collaboration of researchers around the world and
is open to support and participation by any and all existing groups.
The intent is to welcome any and all who want to help "focus"
on this effort and make it succeed. There are meant to be no "old"
politics or barriers in the way and it is time we all made a new
start for these children.)