OOPS!!! How Could Something So Simple Have Been Missed For So Long?
Although “missing link” had perhaps now been finally uncovered – the fact that there was “no link” to anything in the autistic brain – parents, surely, had many, many questions. Given the fact that the autistic child was so completely impacted by his disorder, in all areas of life, indeed, it was truly difficult to understand how something like this, truly a simple puzzle to resolve, could have been so difficult to see. The signs were all there…all pointing to the fact that the various sections of the brain were all acting independent of one another…
How could we have missed this - for decades!
Well, the first, obvious reaction that I had was to think that given the fact I could “put this together”, and I was far from being a neurologist or scientist involved in the study of autism, my first reaction was that someone else simply had to have seen this – but chose to “no make this public”. It was hard to believe that with all the neurologists currently working on autism, attention deficit and so many other issues, and the fact that these neurologists had a much clearer understanding than I did of the workings of the human brain, that “everyone” simply “missed this”.
The simple fact of life was that although mercury had been used in vaccinations as a preservative since the 1930s, it was only as a result of a congressional mandate in 1999 that the mercury content in vaccinations had to be disclosed. Although mercury was the second most toxic substance known to man – second only to uranium – it appeared that given mercury had been used for close to 70 years in vaccinations, everyone simply “assumed” it was safe to continue doing so. For decades we had seen diseases eradicated. With the enthusiasm that surely resulted from the eradication and/or control of so many potentially deadly illnesses, it was easy to see why vaccination schedules were further compressed – to further “protect” children. With the compression of these vaccination schedules, however, more and more mercury was being pumped into our children – in a manner totally unregulated by the government, so much so, that children were now receiving up to 50 times the safe acceptable level of mercury as determined by FDA standards.
Children were now receiving up to 21 immunizations by the age of 2. We “immunized” for everything. Childhood diseases such as mumps, measles, chicken pox, etc. were no longer allowed or tolerated in society. It used to be that children were allowed to have this illnesses and that their bodies were allowed to develop their own immunities to them. That, however, was no longer the case. We now chose to immunize for everything and in doing so, we continued to raise the mercury levels that could make their ways into the brains of our children. Based on what we now knew of mercury and its impact on neuron development and likely neuron degeneration, as the facts started to be known and made public, the pharmaceuticals and the government agencies involved in vaccination programs rushed about in vain attempts to quiet the rising storms. It was truly a testimony to their lack of integrity that in spite of the facts relating to mercury poisoning being presented by scientists and the outcries of parents - worldwide - who were convinced their children had been injured by vaccinations, that these executives in the pharmaceutical industry and government agencies involved in vaccination policies continued to state, and even testified under oath, that there was no link between vaccinations and autism. I suppose one could say they were telling the truth in “some sense” when they stated there were no long-term studies showing any link between autism and vaccinations. Indeed, based on what I had read on the Internet on this subject and on evidence presented at Congressional Hearings led by Dan Burton, that could indeed be true – because, apparently – there existed basically no long-term studies on vaccinations!
Most vaccination studies, it appeared, lasted only a few days to a few weeks. There were basically none lasting a few months or years! Had we all simply assumed those in science had performed long-term studies when it came to vaccines?
And now, the government wanted to possibly make “mandatory” the smallpox vaccine on the American population. Given the apparent lack of long-term research on past vaccines I doubted the smallpox vaccine, new or old, had research that would be satisfactory to many. The government itself had admitted many would surely suffer adverse reactions to this vaccine. It was a known fact that one of those “adverse reactions” could be - death. Those with already weak or dysfunctional immune systems, such as children and adults with autism, would in all likelihood, be the most at risk of suffering such an adverse reaction. This certainly would explain why the CDC and the pharmaceuticals were so adamant about not “making public” their research – to do so, would, perhaps, show the lack of research on the issue of vaccination safety. Parents, doctors and scientists around the world were now sounding alarms and asking: “How could we have missed this for so long?”… and, in the face of possible mandatory vaccines and immunity for the pharmaceuticals, more persons in research, science, and vaccination safety advocacy groups were also now sounding very loud alarm bells when it came to issues of vaccination safety! Indeed the FDA itself, as it pushed for "more time" for study, did not seem “as comfortable” with the issue of smallpox vaccination as were others in government. Why was that? Obviously, there had to be a reason for concern by the FDA itself!
The delivery of this message had been a very difficult issue for me personally. I fully realized its impact to society and to those in criminal institutions. But, I also realized the impact to the children of the world – and as such, I could not keep silent on this issue. The issue was no longer one of safety only for the autistic, it had become one of safety for all men, women and children – worldwide! Again, how could I keep silent on this issue knowing that so many children were potentially being damaged irreparably by vaccinations and that, for some, a future life of crime could sentence them to death for having committed crimes I now honestly believed they may have no control over?
The explosive emotional issues – on so many fronts – now brought to the forefront by autism had the capability of dividing a nation intensely! Would a nation that had become so united as a result of acts of terrorism on our shores that had resulted in the deaths of over 3,000 people now divide itself on issues relating to the safety and well being of its children?
Over 2,000,000 children in the US alone had already been diagnosed with autism.
How would America respond? Would we divide ourselves over these emotional issues? Or, would we unite behind our children? How America responded to these issues, truly, would show the character of this nation – a nation by the people for the people – and a nation where its littlest people - were the most precious of all!
Children are the world’s most valuable resource and its best hope for the future!!! John F. Kennedy
The words of a President – a father – now rang more loudly than ever in my ears. Would America hear these words and do what would be necessary for its children? Explosive emotions could divide, but they could unite, too, and America needed unity now – more than ever, because now, it would be our children we were fighting for – as well as for children around the world!
We had a ton of children on all kinds of drugs – that in my opinion – did nothing to address the underlying issues, and indeed, could perhaps make them worse with long-term use of such medications. Given the possible lack of “long term studies” in vaccination issues, I wondered about the “long term studies” in other issues as well as they related to the pharmaceutical industry. Rebuilding the trust of the American public and indeed – of the world – if this were true, would be a difficult task, indeed.
Making these issues public had been a heart-wrenching experience for me!
I understood the intense emotional issues this information would raise and I understood the huge financial issues for society, government and the pharmaceuticals, as well. Indeed, although I wanted to understand the autistic brain, all these “other issues” autism now seemed linked to, I had been totally unprepared for. Coming to the realization that my son’s brain simply did not work was devastating enough… to come to understand all the “other implications” of autism, made it so that I could, literally, physically, barely breathe – my pain so terribly deep, as I was sure, it would be for all parents of the autistic worldwide and many others in society.
The anger on so many fronts, I knew, could easily divide this nation. Yet, I also knew that in order to move forward and begin to heal, to begin to “fix this situation”, everyone had to take a very deep breath and a huge step back to put things into perspective. Deadly illnesses still had to be controlled, but they had to be controlled with safe vaccines – vaccines that were free of mercury. That was the first step! As such, I called on all members of society to contact their legislators immediately and request the immediate recall of all vaccinations containing mercury – both within America and abroad! This, truly, was long overdue. There were other preservatives that could be used by the pharmaceuticals in their vaccinations and that had to be mandated via federal legislation and enforced. Vaccinations simply could no longer be produced with mercury.
Legislators and scientists now had the heavy burden of how to best address worldwide vaccination issues. In my opinion, given the total breakdown of past “checks and balances”, private organizations, not affiliated with government agencies or the pharmaceutical industry, now had to be put in place to act as a “watch group” over vaccination issues in order to help rebuild public trust. Vaccines were necessary to disease control – there was no denying that – but, the public had to be assured that vaccinations were safe and in my opinion, that necessitated not only a review of the vaccinations themselves to remove toxic substances such as mercury and aluminum, but a review of current vaccination schedules in order to ensure that a child’s immune system was functioning prior to the administration of vaccinations in order to help ensure the appropriate immune system response within our children. To inject children with vaccinations prior to six months of age, the time needed for the liver to begin producing bile was simply – insane. The liver was the body’s main detoxifying organ and as such, it had to be at least somewhat able to “detoxify” prior to the introduction of foreign substances like those found in vaccinations. Of course, I was not a doctor, but, common sense, and my heart, told me that these were truly necessary “first steps” in order to start rebuilding public trust in the area of vaccinations. The emotional and financial burdens on society, as a result of this document, I knew could be huge. But, I knew not what else I could do – but bring these issues to the forefront. There was simply too much at stake not to start acting on these concerns. I feared that now, all of society would feel the emotional pain and burden that had so long been felt by families of the autistic.
For parents of the autistic, from the moment of diagnosis, the emotional burdens of autism were further magnified by financial burdens that were very real, too – financial burdens carried primarily by families themselves with very little help from the government. Current behavior therapy methods for one autistic child alone could cost anywhere from $35,000 - $50,000 after tax for a family - for an intensive private program. Many families had spent tens of thousands trying to recover their children. Some were indeed in debt over $100,000.00 as they attempted to recover their children. These programs were few and often had 12 – 18 month waiting lists. For too many, such programs had been out of reach. Given what I now believed to understand of the workings of the autistic brain, I now saw just how critical intervention programs were for these children and for society overall.
Parents of the autistic, surely, would not allow their children to be stolen – again – as they grew older and perhaps leaned toward sexual crime. Given the magnification of all emotions in the autistic and the fact that, if I were correct and their brain really, truly had no “connections” among its various parts, then the potential harm to women and children around the world - by anyone suffering from possible brain lesions as a result of mercury-induced damage, anyone suffering from increased aggression due to a lack of control over one’s emotions, anyone suffering from personality disorders or self image disorders - was a very real situation that simply had to be addressed! Families and school systems would be ill equipped to help recover these individuals without help! There was indeed much work to be done and although it was natural to be angry at this situation, the reality was that anger would do nothing to correct these issues. Anger had to be let go of… and emotions put to productive endeavors that would move all toward resolving these huge issues. The battle would be difficult, but man had an amazing survival instinct – and in this too, we could survive and come out victorious. Would it be easy? No. Was it possible? Absolutely!
The only good news in all of this was that in understanding the issues, we could now begin to address them. There was simply no more time for the “denial games” of congressional hearings. It had become very obvious that the government and the pharmaceuticals would continue to deny any link between vaccinations and autism. It was now up to society to decide. This truly would be our greatest test as a nation – a government for the people, by the people. How long would we allow the denial games to go on? There comes a point in time when someone finally has to say: “Enough is enough!” - a point in time when true leaders need to take charge and plant a stake in the ground and move forward to at least stop any further damage as “other issues” of “who knew what and when” were being addressed. Given the intense controversy over the vaccination issue and the possible link to autism, indeed, it was surprising to me that “something” had not already been done in this regard. The government knew it had a problem as did the pharmaceuticals. If there was “no link” between vaccinations and autism, why had the government finally decided to gradually remove thimerosal (mercury preservative) from vaccinations? This was as good as an admission of guilt. It was time to move on – to recall all thimerosal-containing vaccines – worldwide – and to finally move forward. Although the pharmaceuticals and government agencies involved in vaccination programs surely would continue their delay tactics it was time society took a very firm stand on this issue and sent Washington a very strong message that delay tactics such as those seen in “congressional hearings” would no longer be tolerated – especially given that while these very hearings were taking place, Congress was trying to pass the Frist Bill – a bill that would prevent anyone from suing any pharmaceutical over vaccine related injuries. One truly had to ask whether or not the government was really trying to get to the bottom of this issue or simply engaging in delay tactics while it attempted to protect its pharmaceutical business partners!
How could “toilet paper legislation©” like the Frist Bill be allowed to pass before the facts were even known? Even toilet paper had two sides... and both sides should at least be heard before such legislation was passed and the issue was flushed! In my view, it was because, perhaps the facts were known – and now, the rush was on to do “damage control”. As such, should the Frist Bill, being put forth in Congress at the time of the writing of this book, pass the American public had no choice but to demand an immediate reversal of that bill. Perhaps it was now time to invoke “jury nullification” and allow the American public to determine for itself whether or not such laws were “just”, because, obviously, the judgment of many in Washington had been fogged by political and financial affiliations with the pharmaceutical industry. Truly, autism issues would now help America see exactly what kind of leaders we had in Washington! Those voting “yes” to the Frist Bill in Washington, in doing so, would speak volumes with a simple three-letter word – a word, in this vote, truly indicative of one’s integrity! To allow the pharmaceuticals to simply walk away from all this, from the potential damage they had caused not only to the autistic, but to society overall simply could not be allowed! As potential perpetrators to this injustice, it was only fair that they be made to pay. The financial burdens before society were now huge and the pharmaceuticals given their role in increasing mercury levels in children, had to be made to help the government and families themselves carry this financial burden.
These children could recover with therapy. But, that therapy had to start as soon as possible. The “old system” we had for dealing with these children had failed too many, too often. If I were correct in my views as to what was going on in the autistic brain, I knew we could now provide therapy for several children at once in many areas in order to allow for communication as early as possible. The simple fact was that there were still – a lot of politics – and money - involved in overcoming the hurdles before us. Perhaps the biggest hurdle was that of the impact of the pharmaceuticals in Washington. Too many parents believed vaccinations had caused their child’s autism for us to continue to ignore this issue. The government “by the people for the people” had to be retuned “to the people” and taken back from big industry!
Families of the autistic had been failed by “the system” in the past! Now that autism touched so many facets of society, would the government still fail to act? Would society fail to act or would it take a stand and send Washington a firm message that politicians not committed to rectifying this matter would be thrown out of office at the first opportunity so that we did not find ourselves, even one year from now, saying: “OOPS!!! How could we have missed this for so long?”
Although the government like the pharmaceuticals, had to carry its share of the guilt in this situation, so too did many others in society – including doctors and those who called parents of the autistic “crazy” for even thinking there could be a link between autism and vaccinations.
Although the “concept” itself was simple enough, the fact that given the overwhelming devastation to all systems in these children, that “something” had to tie it all together and that “something” had to do with the “integration” of all systems – although that concept was simple enough – the acceptance of this concept and the fact that these children could be “so completely impacted” was something that was simply perhaps too difficult to accept in terms of human nature. We had all come to see vaccinations only for the “good” they could do in controlling deadly diseases. It had been almost unthinkable to imagine that these same vaccinations could be so damaging our children internally in terms of brain structure and function. No one “wants”, inherently, to accept that something could be “so wrong”! Man’s inherent coping mechanism had once again set in throughout society – denial!
It was almost “as if” we “could not conceive” and as a result, accept, that something was so wrong, and as such, we chose to deny it rather than see it for what it truly was!
When I first came to the realization that many of the issues we were seeing in autistic children could be traced back to one thing - the inability to see the whole without first understanding all the parts that made up that whole – the sensory information - and the "simplicity of it all" in the sense that such a simple answer explained so much, my first reaction was one of disbelief. I could not believe just how simple this was nor could I believe that something so simple had been overlooked - completely missed - for so long! How could it be that no one had seen this - for decades? It was only later that I then realized that mercury content in vaccinations had only been forced to be disclosed in 1999 by a congressional mandate. And then, the pieces of that puzzle then fell into place too!
Yes, money could have played a role, and I was sure that for some, it had. Yet, for the great majority, however, I believed the answer to the question of “how could we have missed this for so long?” was a multi-faceted answer and as such, many factors had to be considered. The above disclosure issue surely had played a role, but so had many other things too!
Autism was such a complicated disorder, involving so many areas of study, that, quite frankly, for too long, this disorder had been studied in its "bits and pieces" instead of being studied or viewed as a whole. Within each area of study - be that diet, supplements, the immune system, sensory issues, behavioral issues, social issues, etc. - there were so many pieces missing in this puzzle that to try to look at it as "a whole " was overwhelming indeed. How could anyone possibly know all the facets to this disorder? To understand all of autism, it was almost as though you had to be a chemist, a biochemist, an immunologist, a doctor who specialized in vision, in hearing, in speech development, in sensory issues as they relate to touch and taste, a neurologist who could understand the functioning of the brain, a psychologist or a behavior therapist, a member of the CDC and FDA or other regulatory agency, and perhaps countless "other things" all rolled into one! Each area in and of itself constituted a huge area of study. But, as we looked at each part individually, and attempted to make sense of it, like the autistic child we were attempting to understand, we too, had failed to see how the parts fit into the whole!
Only by “stepping back” and looking at the “entire puzzle” could one even begin to think in terms of “overall processes” and how impairments in “overall processing” could explain so much of this.
Many persons were indeed working very hard in an attempt to understand the autistic mind. But, as with everything in life, "clutter" tended to cloud the issues. This “clutter” took many forms – one’s reputation, money, political affiliations, world health issues, etc. There were many reasons that simply made it easier to be “in denial”.
Given the numerous areas of study involved in autism and the simply overwhelming differences in behavior among these children as they attempted to decode the world about them, I understood how difficult it had been to find the allusive "missing link" in the autism puzzle... something that helped to put it all together – especially given the unexpected twist that in this particular case, “the missing link” was defined by the fact that there “was no link – in sensory processing”.
Very little seemed "consistent" among these children. Some could speak, others could not, some could point, others could not, some could be touched, others could not, some were happy, others were extremely sad, some were completely withdrawn, others had managed to achieve a many social milestones, some had changed overnight after vaccinations, yet for others, the change had been more gradual - and on and on and on!
Indeed, herein was the first trap so many fell into - as I did myself, initially - the trap that "all these children were different"!
"All these children were different" - that, indeed, had become a statement one could almost hide behind as he continued to search for answers. But, herein was the first real trap! Focusing on "their differences" made it so that we failed to give proper focus to their similarities. Truly, similarities were often well hidden, but the fact remained that these children were still "similar enough" to have the same label! It was when I came to that realization, that the answer, surely, had to be in their "similarities", that I truly began to see autism for what it was, a disorder impacting all areas of functioning within a child including the digestive process, the immune system, the neurological system, motor functioning, sensory input and processing, behavioral, social, emotional and ultimately, psychological levels as well for one could live in constant frustration - completely misunderstood by those all around - without being impacted psychologically as well.
Although, undoubtedly, there was concern to see "each child" as an individual... as a specific patient, perhaps that concern made it such that, as answers could not be provided to parents, it was easier for doctors, too, to say: "Every child is different". The inability to provide many basic answers resulted in the fact that too many preferred to simply say "every child is different" than to look at the similarities among these children... the few similarities that were the key to so much. Countless, parents and professionals, alike had fallen into this trap!
But, there were "other things" that also greatly contributed to our lack of understanding when it came to autism. These included labels we so often associated with autistic children... labels such as "nonsense language".
Labels had had a very devastating effect on how we perceived the autistic child. By labeling the autistic child's language as "nonsense", we came to view the autistic mind as "broken" and as such making "no sense", when in reality, this could not have been further from the truth! As such, for decades, the majority of autistic children were believed to be mentally retarted.
These children were delayed in key areas - there had been no denying that, but, by having associated them with a "broken mind", by definition, meant that “they were crazy”. Yes, in my view, autistic children were “broken” in many respects, in the fact that the physical structures of their brain were not communicating properly. But, that did not mean that their overall “mental processing” was “broken too” – clearly it was not. These children suffered from a physical breakdown in their nervous system, but in terms of whether or not things “made sense”, they made perfect sense given the structure and function of the brain.
These children were not “crazy” nor were they “mentally retarded”. The actual processing these children were capable of, indeed often far surpassed anything a “normal brain” could do, since as a result of the physical breakdown in overall sensory integration, the brain seemed to adapt by magnifying communication within a specific area – so that functions in one area were now able to more completely talk to one another, in ways no one before could have ever imagined. So, yes, the physical breakdown had occurred, but it was a physical breakdown in sensory processing, not a breakdown in terms of the “mind” of these individuals – it all made perfect sense and as such, there was no such thing as “nonsense language” when understood for what it truly was!
Instead of seeing their language for what it truly was, because we failed to understand it for so long, we preferred to accept that they were "broken" rather than see that the failure to understand - lay within ourselves. It had been easier to label these children as "broken mentally" via labels of “nonsense language” than to admit we had failed to understand them on so many fronts, and perhaps more devastating was the realization that we had – failed to protect them in the first place!
Labels for things could be “good” or “bad”. They could be productive or nonproductive. They could be positive, or they could be negative. Yet, given the workings of a human mind, once a “label” was given, the function within us to “categorize” based on “associations” made it such that many simply “categorized these children as broken” because of terms like “nonsense language”, “attention deficit”, “pervasive developmental disorder”, “oppositional defiant”… and so many “other labels”.
That inherent “categorization” that occurred within man had played a huge role indeed in our “missing this” for so long! It was as a result of this, that I wanted to show, in a very poignant way, what could happen – as a result of a negative label – and that “inherent categorization” we do in the temporal lobe – the lobe also associated with “memory”. In other words once categorized and committed to memory by researchers, doctors, government officials, therapists, and yes - even parents - the danger of a negative label, in my view, only became, potentially, more devastating, because “once committed to memory” it was “as if” you could see or even allow “no other answer ! The same was true not only of the “result” (damaged children), but of the cause as well (in my opinion - mercury).
It was because of this inherent need to categorize and the fact that, within the human brain, the functions of categorization and memory were located in the same lobe, that "negative labels", or inaccurate beliefs, I would argue did more harm than good and that their impact, as such, was magnified, once those labels or beliefs were committed to memory! Of the labels provided above, I will use “nonsense language” to make my point – but again, any “negative label” or inaccurate belief could have been used here!
"Nonsense Language"... two words... but when combined, categorized and committed to memory, they provided a very powerful image... an image that "something was wrong" and "needed to be fixed". This "label", once associated with the type of "language" autistic children displayed, had negative impacts in more ways than one.
First, and foremost, "nonsense language", as stated above, implied the child's mind was somehow "broken" because the language "communicated made no sense" - but, the key here was that it made "no sense - to us" - to the adults who were trying to understand it!!! But, as was shown in the section on Language, when viewed from the autistic child’s perspective, and in view of the brain’s structures and functions, this language made perfect sense!
Labels (or false beliefs) could indeed be quite damaging if the label "tagged" to someone, and especially a child, was a negative one. The fact that what I now understood to be "ordering language" had once been labeled as "nonsense language" led me - at first - to believe this language "should be stopped" or "prevented somehow" because it was "nonsense".
As such, I tried to "break it"... and in doing so, I literally introduced "more parts" to the equation... more things, my child had to deal with in processing language... and, specifically, "more parts" that made no sense whatsoever in terms of relating the "part to the whole"... and "parts" that had to do with "imagination and pretend play"... and "pretend or imaginary play" had many potentially dangerous results for autistic children. The examples I had provided in my section on Language clearly showed that I had introduced “confusing parts and imaginary play” into my child’s world when I did my little experiment to “break nonsense language”. For more on that topic specifically, see my sections on Language and The Danger of Pretend Play In The Autistic Child!
A label (or a false belief)... especially a negative label... could result in persons doing things, unknowingly, that could cause more harm than good! Memory, as explained in these materials, had both a conscious and a subconscious factor involved and as such, although many may have had “good intentions”, that “categorization, commitment to memory and all that that involved”, now made for potentially devastating consequences, especially given the fact that “emotions” were also located in this very same lobe – leading to very specific “stereotyping”, and “associations” in relation to that “label” (or false belief).
I had taken a “label”, categorized it, memorized it and now had very specific “feelings” associated with it (much as had done those who believed mercury was not to blame, in spite of evidence clearly showing mercury contributed to neural degeneration and brain lesions)!
As a result of that categorization, memorization, association, and feeling, I assumed that something "was broken" and needed to be fixed (much in the way a false belief could be assumed to be true and correct). It had taken me a long time to truly see that "nonsense" language was not "nonsense" at all, but actually made perfect sense when viewed as "ordering language" and its role in "breaking the code" and coping with the world. "Nonsense language" was anything but "nonsense". It was the autistic child's perfect way of making sense of communication provided by others, in the form of labels, conversation, etc., of trying to "order what he heard from others" and also, of trying to "deal with life" when things just got too difficult to understand and cope with.
That negative label (like a false belief) - "nonsense language" - had led to a very false assumption on my part... and with that false assumption came my very "wrong" way of dealing with nonsense language. By trying to "break nonsense language", I was actually introducing new "parts" for Zachary to deal with... often nonsense parts that involved squirrels driving trucks, etc. Luckily for me, I also made use of a lot of colors... what I believed to be another coping mechanism used by autistic children in understanding their world. For more on that, see my section on Color and why I believed that for the autistic child, it may truly be the pot of gold at the end of the rainbow!
Indeed, I had misunderstood the role of "ordering language" because of a negative label called "nonsense language" - categorized, committed to memory, and associated with specific “facts” (or believed to be – “facts”) and emotions. That led me to believe something "was wrong and had to be fixed" (likewise, a false belief would lead to false assumptions, categorization, emotions tied to that belief, and a commitment to memory based on those emotions).
Most damaging of all, however, was that as a result of this “processing” associated with this particular label (or false belief), I had attempted to destroy or extinguish a behavior I later came to see as an absolutely critical coping mechanism in the autistic child – a coping mechanism by which the child tried to understand his world and make sense of “communication” and visual inputs (i.e., walk verses don’t walk signs).
The only comfort I had in this was knowing that I had been able to see ordering language or “reference languageã” for what it truly was, before I had actually damaged my son’s critical coping mechanism, before I silenced not only his ordering or reference languageã, but perhaps all future language as well.
In the past, I had recalled hearing parents tell their autistic children that, “if they couldn’t make sense, they should simply say nothing”. I had a very strong message for parents and/or professionals who told autistic children to “stop talking if they couldn’t make sense” – the message you were sending that child could stop all attempts at communicating verbally! Another potentially devastating effect – of a negative label (or false belief)!
These children understood much more than we gave them credit for – no doubt due in part to the “developmentally delayed or retarded” labels we also tagged to them! But, their language did make sense and it was absolutely critical it be encouraged and viewed as an opportunity to further help the child “decode” language and his world – overall – an opportunity to further enhance or complete “reference languageã” given the autistic child’s often incomplete “reference livingã”! Ordering language – once so harmfully referred to as “nonsense language” – was in my view, one of the autistic child’s most critical decoding mechanisms and indeed, a testimony to their ingenuity and determination at understanding their world – and that was more than I could say of the adults who had so negatively impacted our understanding of these children by using such labels as “nonsense language”- or any other “negative” label as it related to disorders we simply did not understand!
I knew I was not alone in not having understood "ordering language"... that many others out there, indeed many “experts” in autism had also completely missed the boat! I only feared that many “experts” and parents alike continued to do so in the future and tried to extinguish this critical coping skill, refusing to see things for what they truly were – continuing to be – in denial!
A negative label (or false belief) had not only put me on the wrong "track" in terms of figuring out the puzzle of autism, and understanding my son, I suspected it had also put many others out there on the wrong track as well... for decades! You see, a label such as "nonsense language" (or false belief) resulted in very different research than would a label of "ordering language" (or more accurate belief).
Was my label of "ordering languageã" correct? At this time, for our family, I believed it was. Was it negative? I did not suspect it was nearly as negative in its implications as "nonsense language"... but, like all labels (or beliefs), it certainly had that tendency to "lock people into thinking this, too, was the answer” – because once something was committed to memory, and associations made for that memory, it was often a difficult thing to overcome what had now been – literally – burned into the brain! As such, the ability to “think outside the box” and “look elsewhere for the answer”, based on the workings of the brain, and the fact that “creativity” resided not in the temporal lobe (where the label had been categorize, committed to memory and associated with emotions) but in the frontal lobe, - involved in memory as it related to “habits”, the control of emotional response and the meaning of words - in my opinion, only magnified the negative effects of the label (or false belief)! Thus, the structure and function of the brain itself, the brain of those investigating these issues, made it such that once things were categorized and committed to memory along with an emotion for that issue, it was, literally, very difficult to look elsewhere for an answer.
Perhaps brain structure and function now also explained why it was so difficult, for so many, to look to vaccinations as a possible answer, too! Once burned into one’s memory, to “go against” what “was believed to be true”, literally meant that one had to “go against” what was burned into the brain – a difficult task indeed!
Because of these very specific workings within the brain, science, researchers, therapists, etc., had a way of getting "locked" into the "accepted view" rather than looking at things for what they truly were. Add to that the fact that funding and grant issues largely determine "what was studied" and for "how long", and the overall “money factors”, and the motivation or desire to “look elsewhere” became practically nonexistent! Throw in there the "politics" of research and government in terms of “accountability” and it all made for one nasty mess - in my opinion!
Due to funding issues, politics, and yes, even egos, there was an inherent defense mechanism in man to dismiss what he did not understand or what went "against his theory" or “accepted theory” as "ridiculous"... in everything from science to religion... and herein was the danger! The functions of categorization, memory, association, and emotions, indeed, when combined, could make for a very detrimental situation in spite of what may have been “good motives” or “good intentions”. The way that the brain was structured and worked, indeed, made it such – and this inherent danger, could only be overcome – if understood!
Indeed, this too, opened entirely new areas of research and the need to “review and eliminate” all negative labels! The costs to society, in terms of misdirected research, emotional impact, etc. were simply too huge not to do so! How much had we spent investigating autism over the last 30 years? Sure, there had been some advances, especially in areas relating to cell structure, diet, the immune system, etc. But, there had been some very negative results too in terms of accepted behavior therapy (i.e., pretend play and the concept of self). Looking at so many issues, so many illnesses and disorders based on the categorizations, memories, associations, and emotions we had come to accept for so, so many “negative labels” would be a huge task indeed.
As such, I encouraged all persons, parents, researchers, therapists - everyone - to always truly "look" at what was before them – to step back - rather than assuming someone else had "the answer"...and assuming that any “label” was correct, because the magnified effects of that label, once imprinted in the human brain, could be overwhelming indeed!
In so much in life, there could be many reasons for which we saw "something"... and the challenge was in continuing the quest to fully understand “that something” rather than in "going with what we knew – or thought we knew" and basically dismissing the rest, through "negative labels" because, right now, we simply did not understand what was before us!
Indeed, inaccurate thought (or beliefs) in term of understanding the autistic mind, and a simple thing such as a "negative label" caused many to look for a "problem to fix" rather than to seek the answer as to "what was behind what we saw". In looking to "fix something" was the underlying assumption that something was "wrong" in the first place... and that, clearly was not the case when it came to "nonsense language"... this language, when viewed from the child's perspective, and the structure and function of the human brain, made perfect sense, because as the child tried to understand language, he was also categorizing it – functions, both found in the temporal lobe!
I was thankful that by the grace of God, I had chosen to make my "experiment at breaking nonsense language" the least stressful possible for Zachary. I had been determined not to use anything "negative" at all with him. Patience and understanding... patience and understanding... patience and understanding... those would be my keys to understanding my son - I was convinced of that - and indeed, they were! Those same keys would now be needed for society in general in order to overcome this issues.
I could not express in words how I would have felt if "punishment" had indeed been used - if I had in any way whatsoever increased Zachary's stress level by using currently accepted behavior therapy methods because I could have, potentially, been punishing him for making use of a coping mechanism he so desperately needed to make sense of his world... a coping mechanism that made such perfect sense, when examined from his perspective. It was very upsetting to me to think of what was going on in the world in terms of behavior therapy by persons who truly did not understand the autistic child... persons who continued to think that "something was wrong and must be fixed", when so clearly, at least in my opinion, this was clearly not the case for ordering language! It was as a result of that need to help others understand the autistic child that I set out to write this document. Little did I realize, however, the many turns my journey in the writing of this text, would involve.
This example I provided dealt with labels we "tagged" on children or others with "mental illnesses", that were perhaps, more accurately, simply responses to the actual structures and working of the human brain - in general. I was sure the same was happening in terms of "how we investigated things" in the area of "attention deficit" or "pervasive developmental disorder"... in all these, a negative label (or belief) undoubtedly resulted in man's desire to "fix something that was broken" rather than look at what we were truly dealing with in terms of form and function in the human brain.
Indeed, I was certain that if "attention deficit" were actually labeled "focused attention" for example, that the research into this area would be quite different since the “categorization, memory, association and emotions” resulting from such a label, would be quite different. Pervasive developmental disorder implied "disorder everywhere"... but, again, that was not the case. There were delays in these children in social area, but other areas were quite strong... the same was true of the label “oppositional defiant” - another "bad label" in my opinion in terms of the type of research it generated and the stigmas associated with such a label. The need to “put the blame on children” via negative labels when we simply did not understand them had to stop!
I had touched on autism spectrum disorder labels only... but, surely, given the workings of the human brain, the same was true of all "negative labels" as they related to stigmas, research, and overall understanding.
My frustration over this issue of negative labels applied to all negative labels – this particular one of “nonsense language” just made for a very poignant example of what could happen as a result of such negative labels we put on children and “disabled” adults – I suspect, in many cases, due only to our lack of understanding in terms of how the human brain actually worked! I could have easily made the same argument with the “deaf child” label. These children clearly were not “deaf” as had been shown from all the normal hearing test results given to parents. The fact that we knew these children were not “deaf” should have led us to immediately drop that label and to look more into why they had such selective hearing… yet, the “deaf child” label, too, yet, another negative label, had serious implications in terms of how the autistic child was understood – or misunderstood! The “deaf child” was as such, viewed as a child who simply wanted to stay “in his own world”, but, given what we actually saw in these children, in terms of their constant need to “break the code” - again, nothing could have been further from the truth! These children were fighting desperately – to get out of their frustrating world and into a world they could understand! They were not “anti-social” or “introverts” – everything in their behavior, in their constant desire to “break the code” clearly indicated the very opposite was true! And, given that, herein lay the key to recovering these children, too!
My intent here was not to lay blame with any particular person who may have come up with a specific label – my intent was simply to show how detrimental “labels” could be. Indeed, I knew that many persons who were associated with a “specific label” in the sense that they had “coined the phrase” were indeed quite knowledgeable in various fields and had contributed a great deal to our understanding of many disorders, however, labels had a tendency to “stick” because of the way in which the human brain worked in terms of categorization, memory, associations and emotions, and as such, I wanted to provide a very clear example of what could happen when one was “defined” by a negative and often, inaccurate label (or false belief)!
Hence, a negative label (or false belief), as so many we "tagged"- so easily - to so many children, had led many of us down the wrong path in terms of research and overall understanding of the autistic children... and, as the decades went by, with still no real understanding of so much of what we saw in these them, undoubtedly, many who had studied and lived with autism became hopeless and/or helpless in their fight to continue to seek the answers. This battle with autism had been such a long one, for parents and professionals that it was easy to become overwhelmed and fall into helplessness.
Yet, many did persevere... and with each passing day, more was learned... and more was observed!
There was “another label” that had hindered our progress. It was that of "expert". Given the many fields there were to understand, persons could become knowledgeable in one or two areas, but it was truly impossible to be knowledgeable in all areas related to autism, or any other field for that matter – and that included those in government offices and the pharmaceutical industry too! To call anyone an “expert” in anything placed a huge burden on that person, again, because of all that was implied in “a label” once categorized, memorized, and associated with emotions.
We had "experts in this", and "experts in that" and among all these experts, were the helpless parents, desperately seeking answers for their children... answers that were too often too allusive. If the "experts", together, had been unable to piece together so much of autism, surely, many parents felt they could not either – because, they, after all, were not the “experts”. There was indeed an inherent danger in labeling some as "experts" while dismissing the observations of others. And, as such, a label, by being “placed on one” yet “omitted” from another, also had potentially devastating consequences in terms of “what was investigated”, what was “believed to be true”, “what was believed to be fact” and “what was believed to be fiction”, “what was believed to be over-reaction in parents” and “what was believed to be the value of one’s opinion or observations in various matters” – because just as “with a label”, the “omission” of a label in a specific individual, also had very real consequences!
Our over-reliance on those with the label of "experts" had led us down a very dangerous path as more parents "left it all in the hands of the experts"... knowing that "they were working on it". Indeed, when I first proposed my theory to parents, one of the very first reactions I received from a parent was: "This can’t be right. It's too simple. If this were it, someone would have seen this a long time ago!" The same, surely, could be true of mercury level accumulations via vaccinations and safe mercury standards as defined by the government itself! Yet, for a long time that “connection” had failed too!
Einstein's great theory of E=MC2 was simple too... but it took man until 1905 to figure out this simple relationship. Although the answer to this puzzle was simple, the derivations necessary in order to arrive at that answer could take countless pages of mathematical formulations. How could something so simple have been missed for so long?
Although Einstein’s equation was so beautiful in its simplicity, the proof behind this equation was complex indeed. So, too, was it was autism. The answer now seemed so simple – the fact that mercury resulted in brain lesions that then led to sensory processing, integration and relay failure - yet to put all the pieces together given the variation we saw in so many children with autism - to arrive at this simple answer - had proven difficult too!
I was certain many in neuroscience, behavior therapy, the pharmaceutical industry and government hoped my theory simply “went away”! But, given the emotions involved in the issue of autism, this issue, surely, would not go away, but rather, would simply intensify, for now, issues as presented in these materials had now been categorized, memorized, and associated with emotions by parents around the world – and as such, if anything, this issue would only further intensify, as the realities of “how much devastation” there had been to these children, finally set in! The realization of this devastation within their children, that twisting knife, for so many parents, would once again be felt. Perhaps now, however, that knife could finally be removed once and for all and thrown away. With the understanding of the devastation, perhaps now, the wounds could finally begin to truly be healed - for autistic children, their parents - and now, for society as well!
In spite of the fact that so many in government and the pharmaceutical industry, I was sure, now wanted to see this theory of mine, “go away”, financial, and emotional issues (i.e., pride and ego) aside, again, in autism, the implications for mankind, and for these children and their families, were overwhelming, but not insurmountable. Parents of the autistic and society in general would have to take a huge breath and a huge step back in looking at all these issues – and it was only fair that those in government offices and the pharmaceutical industry do the same. We could either continue to fight each other on these issues, or we could move forward in addressing them. Denial was no longer an option!
The label of "expert" truly had a tendency to blind so many in so many fields, including autism, government and research. How I longed to see the word "expert" in any field completely disappear and be replaced simply by the words "researcher investigating". In my opinion, until all the answers were known - and proven to be fact - there were no "experts" - in anything.
Indeed, I now had a new term - a new "label" - for all those who tagged labels to children and who failed to see beyond the "accepted label", the "accepted theory"... these persons, in my view, were "label blindedã" - as defined below:
Label blindedã: The inability to look beyond a label and to see what in many cases was obvious due to the inherent structure and functioning of the human brain. A person showing co-dependence on a label. One who was unable to change his thought or emotion once a label had been affixed to a particular person, theory, or, object. One who lacked flexibility to adapt, look and move beyond “a label”.
The thing about labels was that they had a tendency “to stick” – and I think all readers now understood why that was based on brain structure and function! I hoped those, currently burdened by the label of “expert” would not further be burdened by the label of “label blindedã”. Surely, my “new label” of “label blindedã” did not sit well with many “experts” or researchers, but perhaps now, even you, could understand what it meant to be “defined by a label”!
Labels had blinded so many. Many parents, as I had in the beginning, had failed to trust their instincts, yet, others, like so many professionals, did persevere... and slowly, parents, too, were starting to piece together critical parts to the puzzle. And, although parents were often dismissed in many of their beliefs, lacking that all important label of “experts”, it truly was parents who had the 24 hour/7 day a week living lab. And, within the observations of parents, surely, there had to be answers to so much!
Now that I had provided some answers in terms of “how” this failure in sensory integration in the autistic child could possibly have been missed for so long, I now turned my attention to the very critical “next steps” in terms of what I saw needed to be done to help not only these children, but their families and society as well.
The very, very first step was for everyone to take a deep breath and a huge step back.
Society now had some major issues on its hands – including the need to control deadly diseases. Errors had been made – there was no doubt about that. But, as a nation under God, I hoped we could now turn to the bible for guidance in addressing these issues.
The bible says: “Let he who is without sin cast the first stone”. In my heart, I knew many involved in this overwhelming situation had also been innocent victims. Surely, there may have been some “who knew” and simply did not speak up – or worse – chose to hide the facts - and, as such, yes, I did believe the shackles currently on the autistic and any other mercury damaged individual should be removed and placed on these persons who truly did belong in prison. But, I knew there had been many, even in government agencies, and in research - even in the pharmaceutical industry - who had simply “missed it” – who had not seen the FDA mercury standards or who had not been aware of everything in the “vaccination schedule” as it related to cumulative doses of mercury being injected in children. I was not trying to absolve anyone of blame (as would the Frist bill), I was simply trying to make people understand that – yes, mistakes do happen, and at times, these could be terrible mistakes – there was no denying that. And yes, there were surely some who had acted in a criminal manner – and those few should be put in prisons – there was no denying that either.
Yet, in taking my step back, I knew we had to focus on moving forward and rebuilding a very violated trust. To rebuild that trust necessitated the concerns of the public in terms of vaccination safety had to be addressed.
There were more than simply issues of mercury to be addressed, however. Parents were also sounding alarm bells in terms of vaccinations that did not contain any mercury – such as the MMR. Given the reservations I now had as a parent and the knowledge that long term immunization/vaccination studies appeared to be virtually nonexistent, and the fact that science was now showing the interaction of measles and mumps viruses to be problematic, how could we now ignore these warning bells? We simply could not!
As adults, we simply had to take that huge breath and that huge step back and put things in perspective.
For parents of the autistic, those who perhaps felt the greatest anger in reading these materials, this huge breath and step back was even more important. Given that autism now touched all aspects of society, surely, society would now see the need to help these children and provide financial relief and therapy for these children and their families. Research could now also be much more focused, as could be therapy methods. I did not know if neural connections once damaged could be somehow regenerated. I doubted that could be done, but special tools could certainly now be devised to help these children break the code and leave the shackles of autism behind. Along with the devastation this message had surely caused parents, and society, within it also could be found the keys and answers to so much!
The first step to progress in the area of autism had to come with a new definition of autism. As such, based on the information presented in these materials, I provided what I believed to be a much more accurate definition of this condition...