Winter, 2000
Autistic Spectrum Disorder I KIDS Into the New Millennium: Science
SCIENCE says:

Epidemic can 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 children.
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 possible NOW.

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?

Happily (or 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" things further,

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.

There are additional huge implications from the statement, "this IS a disease" (NOT a Developmental disorder, a congenitally "miswired" brain, etc.)

1. "Disease" 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

iii. Parents 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").

2. Unlike 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 speech.

i. When looked upon as a disease, this should be expected, not hoped for or discounted as "impossible."

3. Behaviorally, 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"

a. unfortunately, 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 illogical, sci-fi).

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; changes dramatically

b. You only beat, solve, potentially cure a disease by treating the etiology / causation, NOT the after effects

4. Parents are afraid:

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 logic.

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?

Enough parents 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.

IF financial 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 Board's efforts.

• We 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

An unprecedented 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.

What happens 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

Michael Goldberg, MD

Addendum: 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.

(Note: As 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.)