All Those Brain Studies... What Do They Really Tell Us?
The Need To ... Question Everything!!!
If one thing had become clear to me, it was certainly the fact that the autistic brain processed information in a very different way than did a "normal" brain. As I came to seek further answers and looked into the area of brain research as it related to the autistic child, it also became quite clear to me that, as a parent, I had to "Question Everything!".
We cannot order men to see the truth or prohibit them from indulging in error.
Max Planck, Philosophy of Physics, 1936
This was one of my brother's favorite quotes...and how true it rang in every aspect of life... from science to religion!
My brother was a well-respected scientist worldwide in the field of MRI (Magnetic Resonance Imaging). Although his research focused on the areas of the heart and cancer, his understanding of MRI technology definitely made him a leading authority in this field, a man who knew and understood the whole issue of "MRI" - its benefits, and, more importantly, its limitations!
When I first came to the realization that Zachary's true problem was not with "a lack of routine" but rather with a "lack of order", (I now realize the issue was more specifically with a subset of the ordering function... with the proper processing or integration of the parts into the whole), I had naturally called my brother to ask him what he thought about using MRIs to focus specifically on the brain's areas involved in the function of "order" processing for the parts into the whole. His response (this was the only comment in this entire text that was attributable to my brother):
“Well, you can’t really do it because of the difficulty in obtaining what’s considered an image of the AT REST BRAIN.”
This was the key statement all parents needed to keep in mind throughout the discussion that followed.
Given my brother’s knowledge of MRI technology and his immense contributions to this field, I trusted his views on "practicality" when it came to brain studies done with the use of an MRI to study specific functions within the brain.
When you were studying the heart, you could pretty well determine an "at rest" state... measured in heartbeats - or lack thereof (in the ultimate "at rest scenario"). You could also determine whether or not a tumor did or did not exist, etc. But, when it came to actually analyzing the brain's functions or processing, then - that "matter" became a little "grayer" - if I may use that pun. :o)
The more I thought about this, the more I realized just how true this really was!
My brother's one comment had haunted me for several days: “Well, you can’t really do it because of the difficulty in obtaining what’s considered an image of the AT REST BRAIN”...
think about that statement for a minute...
Did we not have numerous "brain studies" on all kinds of brain functioning and processing? The more I came to understand my brother's statement, the more I came to truly see that many of these "brain studies" were plagued with design flaws and as such, perhaps, at best, could be only "half truths" in terms of what was presented as "fact or finding" resulting from such studies. As such, I wanted to address some of these issues with "brain studies", as I saw them:
First, I saw two types of brain studies: 1) those that dealt with brain function and 2) those that dealt with brain structure.
The one common thing both of these had, however, was generally a comparison of the normal brain to the abnormal or, in this case, autistic brain.
Let us begin by examining the above statement on the at rest brain. Just what exactly was "an at rest brain?" That, indeed, was quite a question! And, there should be a very good answer to that question given the “normal at rest brain” was what was needed for comparison of the abnormal, or autistic brain to the "normal" brain. I would argue that an "at rest brain" was probably necessary for both types of studies in terms of comparisons being made between the normal and autistic brain (or any other brain, for that matter).
So, what – exactly - was an at rest brain? I thought about that for a long time, and, honestly, my conclusion was that there was no such thing!
To any scientist that would say otherwise, I had only one response: Prove to me that what you were looking at was an at rest brain! You can’t do it! There was no such thing!
In actuality, although those in science would like us to think they understood a great deal about the brain what constituted an "at rest brain" or even a "normal brain" had yet to be defined! Let me explain why I believed this to be the case.
The fact that my brain was not engaged in a "conscious" activity did not mean that my brain was “at rest” – even though, I, myself, as a person, may be. Take for example the extreme case of a patient in a coma. In terms of studying such a person's brain structure, could you even begin to do it? Perhaps... but, perhaps only to a limited extent. After all, did the damaged brain not automatically often try to repair itself? How else could we explain the fact that patients in comas for years suddenly "woke up"? How else could we explain that an area physically damaged in the brain as a result of say, a stroke, could actually redirect an activity to another part of the brain as had so often been seen in numerous brain studies? How else could we explain what we saw in terms of brain processing in the autistic child? In such situations, both brain structure and brain function – surely - had be somehow changed for this to happen... that, somehow, by design, the brain automatically "rewired" itself by changing the physical neural paths and neural functions within specific structures.
But, even without looking into extreme cases, and in looking simply at a "normal brain", while I slept, was it not true that my brain still performed untold wonders?
It processed what I had gone through during the day, dealt with my emotions, gave me dreams to entertain me while it performed its wonders each night, healed and rejuvenated the cells in my body, triggered attacks on foreign substances, viruses or other poisons/intruders in my body, monitored the chemical balance within my body, monitored the action of my enzymes, monitored the action of all organs, nerves, muscles, etc., monitored my bodily functions so that even while I slept, I received that message to “go to the bathroom” in the middle of the night, monitored my environment so that I could be easily awakened if I heard my autistic child, an alarm, a car going by outside, or a siren in the distance, it addressed my problems while I slept and often allowed me to wake up with just the answer I needed to resolve so many of my issues, and indeed, if it perceived a weakness in one area - within itself -, it also worked at “rewiring itself” to once again allow me to function and cope with my world. Truly, the “at rest brain” was an amazing and active organ, indeed! During “waking hours” – those hours of the day, when I, physically “was awake”, these activities were magnified by the huge input of newly incoming information via the senses.
Given all that, just how exactly did science define the “at rest brain” used for comparison purposes? Well, come to think of that, I could honestly say I had never seen a study that provided an acceptable definition of the "at rest brain". Yet, science was obviously comfortable with the fact that it knew just what the “at rest brain” or even the "normal" brain was, since these were "used" in so very many comparison studies. But, did those in science truly know how to define the "at rest" or even the "normal" brain? Really? The fact that a normal brain often "re-wired" itself when –impaired, in any manner - was that not "normal" in and of itself…just the fact that the brain even attempted that! Indeed, this seemed to be kind of "by design". Hence, any brain that perceived within itself any impairment whatsoever was probably working at "fixing that impairment" by redirecting specific functioning.
And…just why did we spend 1/3 of our lives sleeping anyway? Could this be tied to the brain's need to repair itself along with the body? Again, the fact that we were not engaged in a conscious task did not mean that our brain was "at rest". I would argue that perhaps just the opposite was true -that when man thought the brain was at rest, it may actually be performing some of its greatest wonders, both in the abstract and the physical (processing all kinds of information but, more importantly repairing itself and the body as well).
Although I would have liked to be able to write of function verses structure, in the sense that “brain studies” were usually studies of either “function” or “structure” the simple fact was that the two were actually - inseparable. Could you really have studies that looked only at function and others that looked only at structure? Given the fact that the brain was constantly engaging in the monitoring of the overall body as well as in the monitoring of itself for potential impairment and the need to redirect specific functioning, I tend to think that you could not separate the function from the structure because both could be constantly changing as the brain physically fixed or rewired itself – physically changing neural path as well as neural function! In addition, there were several other key factors to consider, such as the brain’s primary activities at specific times in life.
For example, let us look at the whole issue of memory.
How many of you had a memory from when you were an infant? - From when you were a year old? Two years old? Three years old? Four years old? Five years old? What was the very first memory you had…and, again, more importantly, how old were you when that event happened? The answer to this will vary for each and every person. But, there was obviously "a time" at which memory seemed to "turn on" and begin to imprint things in the human brain. Actually, if you thought about it, when it came to memory, only certain things were remembered at certain times.
For example, if I burned my finger on a match as an infant, I would not remember that particular "event" as an older child, or as an adult. But, somehow, the infant did remember "the lesson" that fire burned the next day and from that time on. Thus, the actual event was forgotten, yet the lesson was learned for life! So, why was that? Why did memories work this way?
There was an old saying that "you never forget…it is just your ability to recall that changes over time". But, if even I could not recall an experience, how could science possibly know that I had ever experienced something or not? How could science say that "my memory" was not working - properly? Indeed, I would argue that it could not! I would also argue that the same applied to the whole issue of the abnormal autistic brain (or any other brain – even a “normal one”).
The fact that an autistic child could not recall something, did that mean he had not learned it? From what I had seen in my own son, and from what I now believed to understand in terms of the working of the autistic brain, I honestly thought that Zachary knew much more than I could even begin to imagine. He was constantly doing or saying things and I found myself asking: Where did he get that – like the incident I had described as it related to his “nudity” in my first book, Saving Zachary: The Death And Rebirth Of A Family Coping With Autism. Zachary had been playing in water outside and so, before coming in, I had taken all his clothes off in the garage. Someone had locked the door leading from the garage to the house. As my nephew (who had been visiting with his family) and I both knocked on the door and said: “open the door”, Zachary, out of nowhere chimed in with an almost anxious, “I’m naked”. Interestingly, this had been one of the first times I actually noticed anxiety in Zachary. But, in terms of the “I’m naked” comment itself, I had no idea where he had picked that up – but obviously, he understood the concept of “I’m naked”.
As a child grew, his brain obviously became more active or inactive in specific functions... be those functions memories or the redirecting of specific functions to other areas of the brain as a result of impairment in one area. While the infant’s brain was more worried about the next meal and overall safety, the older brain, of say a two year old, was more concerned with things in the environment, as the child became more and more aware of his surroundings and became more and more independent. So, if brain development was key to certain functions or activities taking place, as displayed by the various colors in MRI scans, then, I had another question for the medical field and all parents out there. But, before I could ask that question, I wanted all readers to look at this picture.
This was a picture of my son, Zachary (on the right) and of a child born just 2 days after him (on the left). Zachary weighed exactly 9 pounds at birth...the other child weighed 8 pounds and 3 ounces. In this picture, the children were just 2 months old. Note that Zachary was now HUGE compared to the other child. This could easily be explained by the fact that he ate constantly... always wanting the "high" from the natural opiate effect of casein (dairy protein) he got from milk. Zachary ate so much, in fact, that for quite a while he woke me almost every 20 to 30 minutes during the night. I had been so completely sleep deprived by this, that I could no longer continue breastfeeding after only three weeks. Zachary’s constant feedings continued even while on formula. His pediatrician used to call Zachary "the moose". As I mention in my first book, if you, or someone else was "joking" about your child in any way - either appearance, future profession, etc., look closely... what you, or they, were laughing at may turn out not to be a "joking" matter - at all - but an indication of a possible problem down the road!
By two months, my son's brain was clearly, physically, much larger than that of the child next to him although, chronologically, both children were basically of the same age – having been born only 2 days apart! Mal-absorption, I now came to understand, could work both ways. A child could be big or small in comparison to his peers and still not be receiving the appropriate nutrients needed by his body. Eating more did not mean that Zachary was in better health. Needless to say, in looking at this picture, yet more flaws or "half truths" in brain studies came to mind.
For example, there were many studies that “indicated” autistic children's brains were "abnormally big" in some way, almost implying these children suffered from encephalitis. When I saw such studies, I now tended to ask myself a few very basic questions.
I had seen time and time again where studies claimed to make the case that the autistic brain was much larger than the normal brain. Indeed – yes - one could easily see that my son's brain was much larger than that of the child next to him. If I were only provided with chronological age and "brain size", perhaps there would indeed be reason for concern... but was there? Really? Well, I could only respond that I would be a little more worried if Zachary’s brain had not grown to fit his body. :o)
So, whenever I saw a study that tried to illustrate the autistic brain was abnormally large, the first thing I now asked was: What about the rest of the body? Bottom line - if the brain size matched the body size, then, I was ok. If, however, the brain was huge and the body had remained of normal size, then, obviously, I would be a little more worried. So, to parents, I would say, make sure you always get the rest of the story, in this case, comparative body measurements. Thus, unless relative body measurements were also given in order to evaluate whether or not "overall brain size" was appropriate, such studies were providing only "half truths" - at best!
The fact that my child's brain was so much larger than the child next to him also necessitated that the specific "connections" within his brain would also, overall, be more developed.
When I first began to consider "all those brain studies" and what they truly told us, I must admit that my initial reaction was to say that these studies were so flawed they basically told us nothing! But, as I pondered this question of "what all those brain studies were telling us", I came to the conclusion that we could indeed draw some information from "some of them". I still had many concerns, however.
How, for example did you isolate, or set aside the issue with greater overall brain development (as seen in Zachary when compared to the child next to him) and determine what within that greater "overall development", was further abnormally developed within the autistic child. For example, how do you distinguish between overall greater brain development and a specific area of the brain that showed greater, further development when the overall brain was bigger than “normal”. In other words, scientists needed to look at what was simply greater growth due to overeating and what was "greater development" within the brain due to the autism itself! But, how did you separate the two? This indeed, was a huge task, in my opinion!
If one were truly able to isolate these variables, then yes, perhaps we could learn something in looking at the autistic brain. If some specific areas could be determined as yet "more developed" - in spite of issues relating to overall greater brain development, as shown above - then, indeed, these would be areas of greater interest. The fact that even within the greater overall brain, some areas of the brain appeared "more developed" - still - than could even be explained by differences in eating patterns, perhaps these specific, still much more overly developed areas had to be an indication of greater activity in that area in the autistic child, as I suspected under-development could be an indication of a problem area as well.
Given the overwhelming concern with the "ordering function" as it related to the integration of the parts into the whole, I believed some of these more "developed" or larger areas within the overall more developed brain as shown in Zachary, must have had something to do with this processing and integrating of the parts into the whole... with the child's constant need or attempt at decoding his world! I also believed the role of color and motion in the autistic child most likely resulted in differences in brain development too – as would the inability to properly integrate information from all five senses and the peripheral nervous system as well!
It was important to be able to isolate those factors/variables that could be explained simply based on greater overall development of the brain as a result of "overeating" and thus growing faster - from those areas that "grew faster or more slowly” specifically as a result of autism.
If Zachary's brain was so much larger than that of the child next to him who had the same chronological age, then, I had to believe that as a result of that greater and faster development only... that his "more overall developed brain" was also processing things in a more advanced way than would be the case based simply on his chronological age. I believed that the very size of his brain alone and the fact that it had "grown faster" by definition, means that it had "more connections" and that as such, it had to be "more advanced" than would be the case based on chronological age only. Through development alone, as shown in this picture, I would fully expect the larger brain to function differently than that of the smaller child - even though both children had the same chronologic age, it was much more difficult to determine the developmental age of each child’s brain.
If that was the case, then, I would argue that Zachary was most likely processing things differently, too, simply as a result of that overall greater development. Was that a good thing? A bad thing? Who was to say? I think in some cases that could be good, as evidenced by the “savant-type” functioning in so many of these children, but that it could also be bad, as I suspected was the case in respects to issues such as imaginary play.
Yet, no one knew for sure what went on in the brain…especially not in the brain of an infant or even a child…and even less so in the brain of an autistic infant or child. Science could not control the thinking of infants/young children and/or of the autistic the way it believed it could more easily manipulate an adult’s thinking in brain studies. You could ask an infant what he was thinking about at a particular time. And, although you could ask a small child what he was thinking about, they probably were not “in tune” enough to tell you absolutely everything that was going through their minds (or were sometimes embarrassed to even tell you…like when they were thinking: “why are they doing all these things to me?” or, thinking "It's kind of scary in this big machine", etc.). How did those “hidden thoughts” impact brain scans in all these brain studies?
Indeed, with the passage of time, what concerned an infant verses a young child in terms of the area of his fascination changed greatly. A two year old was not concerned with the same things that occupied a five or sixteen year old. Memories also began to be imprinted with the passage of time. Daydreams were different. Thoughts, emotions, physical changes were different, too - each triggered by the brain!
Also, in comparing the "autistic child" to the "normal child", could comparisons really be made? After all, what was to say that a child normal at birth would not develop autism later on? Was the onset of autism genetic or was it related to environmental factors? If genetic, then a child who did not have autism by the age of three or so, probably would not develop it later on. But, if autism was due to outside factors, such as vaccinations, then a “normal child” scan today, may not be normal in the future, and as such, could probably not be used in comparison studies of the “autistic child” to the “normal child” since that normal child may not “continue to be normal in the future” if he developed autism. Were all these factors considered? Was autism genetic? Was it due to environmental factors? Unless the answer to that question was clear, I suspected many of these brain studies were further, inherently, flawed! Were children followed through age 4 for example, to ensure they did not later develop autism prior to the publishing of any comparison studies of the "autistic" verses the "normal" brain? Would that brain continue to be considered "normal" or would it be changed due to environmental factors? So, were all those normal brain scans really “normal”?... or, could some of them also show signs of autism later in life? How many children once considered “normal” for brain scans had later developed autism? And, was it right to assume that because the brain had certain areas that were "larger" or "smaller" in autism that this was necessarily bad or good? This certainly led us into the whole discussion of "use it or lose it".
It was a well-known fact that with so much in the human body, the more something was used, the more it developed. The more memory exercises one did, the better one's memory. The more physical exercise one did, the stronger the muscles, etc. In my opinion, the "use it or lose it" concept could also be applied to the functioning of the autistic brain – or any human brain.
Perhaps the very fact that the autistic child was constantly engaged in trying to "break the code", in trying to integrate the parts to the whole in his world meant that those functions dealing with order processing, and specifically, as that related to the integration of the parts into the whole, explained why certain areas of the brain were indeed more developed than those seen in "normal children".
I also suspected that the use of color and the creation of one's own "code to life" were also areas necessitating further investigation.
And, how does spirituality fit into the picture? That was certainly one of those abstract subjects science tended to shy away from. But, it certainly was a valid issue in this discussion. How was it that some human brains came to a spiritual understanding at a very early age (at 3, 4, or 5) and yet others, never achieve a spiritual understanding at all? Could we simply discount spirituality and/or the soul because science could not prove it existed? No - we could not. So, how did such issues come into play?
Science could not even begin to understand these complexities and, I would argue, the same was true for the human brain in general.
"We still do not know one-thousandth of one percent of what nature has revealed to us."
For decades, we thought we knew that "this specific area was related to this specific function". I would argue that if my theory on autism and the inability of the autistic child to properly integrate the parts that make up the whole was correct, that indeed, much of what we once thought to be true of the brain, could simply no longer be true – especially as that related to brain injury or impairment!
If, as I suspected, the underlying assumptions to basic brain structure and function were incorrect in terms of the “injured brain”, be that an autistic brain or any other brain, then, I could not help but conclude that the "results" of the majority of the studies we had done so far, were incorrect too! If this were true, the implications for past and more importantly, for future brain studies – all brain studies - were huge indeed!
Autism, a disorder that had so long been placed on a back burner in terms of funding provided in the past, had now moved to the forefront of all brain research, because, only autism, could truly show scientists how various areas of the brain could react to a brain injury… independently of one another!
The misfortune of these children had become a huge area of opportunity in discovering what truly could be done in helping anyone who had sustained a brain injury via the use of “alternative” sensory input for specific functions. Perhaps in this twist of fate, the funding that had so desperately been needed for autistic children in terms of both research and behavior therapy – since behavior therapy also could now provide invaluable insights – could now be provided for these children, in the hopes of helping not only the autistic, but all persons who had suffered any type of brain injury – be that injury as a result of a stroke, an accident – anything – the autistic mind, surely would prove invaluable in learning so much in terms of how the human brain really worked! The potential savings to society in terms of speech therapy, rehabilitation, insurance costs, medical costs, emotional costs, etc. – could indeed be huge!
Children, once so forgotten by so many, and so completely failed by society and “the system” in general, could now, through their “breaking of the code”, provide the keys to so much more – and as such, their plight, in an odd twist of fate, could unite the world in its constant search man had in understanding “himself”. Children whose concepts of “self” had indeed , so often been lost, now held the keys that could remove not only their shackles, but the shackles of so many others!
It had been well-known and scientifically documented that often times, when one part of the brain was impaired, the brain re-wired itself and another section of it took over for the impacted area! In the past, we knew that certain language functions could take over for others, but I doubted anyone could possibly have suspected that “alternative sensory information” could be used by the brain to perform functions that sensory information was never intended to perform – at least not given man’s previously existing knowledge base!
If this was the case, what happened in the autistic child when this one function so greatly impacted all aspects of his functioning... just "how much rewiring" was actually "going on" in these children? And, more importantly, how much was actually – possible! One could not help but theorize that perhaps what man had for so long thought was “rewiring” was indeed not “rewiring” but simply the “making live” of “alternative wires” that were already there!
In my opinion, the brain of these children was undergoing tremendous "changes in its circuitry", indeed, in both its form and function, as it attempted to make sense of the world about it and attempted to integrate information on all these levels based on this one impairment alone! Indeed the child's brain needed to “reactivate specific areas” in terms of how it processed sensory, emotional, social, behavioral, sexual, motor, communication information and all other possible aspects of life also. The fact that the autistic brain could attempt to "fix itself" on so many levels as the child constantly worked to "break the code" was amazing indeed!
The best analogy I could provide was that of laying cable. It was my belief that the “cables” integrating the entire network – central nervous system and the peripheral nervous system – had been laid while the child was in the womb. This cabling, encompassing all areas of functioning in the brain, were found throughout its structure. Yet, other than a few truly “operating sections” (i.e., primary areas of function), most of that cable could still be considered “black cable” – cable not yet in use. It was there, throughout the structure, integrating the entire network, but only specific sections were actually “active” in terms of specific functions.
Those sections “most active” in specific functions, man had somewhat identified – and as such, “categorized” the brain, and indeed, the entire central and peripheral nervous systems in terms of its “structure and function”. Yet, this continuous cabling made it such that “the whole” was still very much interconnected… and as such, if one part of the cable “went down”, the brain attempted to bring “backups” online!
In my opinion, the fact that this interconnected cabling was found throughout the brain – either as “black cable” or “lit” cable, meant that the capability was there for some sections to take over the function of other sections if a “blackout” occurred. Thus, some functioning, for many functions, in my view, simply had to exist throughout various areas of the brain as opposed to being limited to one specific area within the brain. It was all just a matter of finding the “light source”, the alternative sensory input necessary, to light the “backup” cable.
To understand not only the physical changes within the autistic brain but also the chemical and functional changes that surely also had to be taking place became mind-boggling but it also made me stand in total awe of the human brain in its attempt to “more fully activate” areas once less involved, but in my opinion, involved nonetheless, in specific tasks and to adapt to the changes within its own form and function as a result of any brain injury.
If you then threw in the natural opiate effect of casein and gluten and their impact on the central and peripheral nervous systems, the puzzle of the autistic mind became even still more intriguing as within that, lay perhaps the keys to unraveling the effects of opiates on several key systems within the body – those things that “numbed” man in so many ways – as did for example, drugs and alcohol!
Autism now touched absolutely all brain injury and brain processing and/or structure studies and held within it the keys to rehabilitation in so, so many areas – speech impairment, motor impairment, emotional impairments, disorders dealing with issues of the “self”, psychological disorders such as obsessive compulsive behavior, personality disorders, countless behavioral and emotional issues as they related to aggression, hate, fear, anger, love, joy, frustration, issues of crime, issues related to the improper functioning of the body as it related to the immune system, the digestive system, instincts, motion, sexual behavior, social behavior, mathematical and language processing, issues related to the effects of opiates such as drugs and alcohol on the body… the understanding of so many issues, could now truly move forward as a result of a disorder that had so devastated so many children – a disorder, that as damaging as it had been by severing so many critical connections, for science now removed so many “variables” in the study of the human brain!
Children once so forgotten and left in their own world – their families so often devastated emotionally, financially and physically – now held the keys that would break the code to so much!
I cautioned all parents against allowing their autistic children to now be used as “rats” by those who now had the most to gain politically and financially by the study of these children – the government and the pharmaceuticals.
In order to prevent any “abuse” of autistic children by a system and an industry that had so failed them in the past, I encouraged all parents, and society as a whole, in asking that all research as it related to the use of autistic children, be funneled trough the organization of the US Autism Ambassador, in order that the overall safety and best interest of these children be first and foremost the priority of all research! The US Autism Ambassador was currently working at providing Excellence Training centers for these children, and at putting in place an organization across America dedicated to the recovery of these children. All research involving autistic children had to be reviewed by experts in all fields of autism, including diet, immune system issues etc., prior to it being allowed in order to ensure the safety of these children who could now, more than ever, be abused by a system that had already failed them in so many areas.
Only independent researchers trained in issues of autism, researchers not tied to government agencies or the pharmaceuticals could do what was in the best interest of these children first and foremost. The danger of these children becoming – now – nothing more than “lab rats”, in my view, was overwhelming because these children could now - literally - save society, governments, pharmaceuticals, insurance companies, etc. – hundreds of billions – in research and therapy expenditures/programs as research could now become much more focused as these children could allow for much more specific study of very specific structures and functions within now very isolated areas of the brain – doing away with many variables that, in the past, so often made so many research studies “inconclusive” . In addition, insurance companies themselves could save from what was learned via these children in areas of speech therapy, mental health care costs, and perhaps physical therapy, etc.!
Austistic children, by what they could teach society, children once thought “uninsurable” could now, potentially, save the insurance companies themselves – billions! Children and their parents whose voices the government and the pharmaceuticals had tried so desperately to silence now held within them priceless observations in terms of understanding man himself in so many areas. What an ironic twist of fate - indeed!
The further potential harm that could be caused to these children via research organizations not first and foremost dedicated to the recovery of the autistic was a huge issue indeed! Any further damage to these children – by researchers now in a professional, political and/or financial race to find the answers to so much – had to be minimized. And, that could only be accomplished by having independent centers that worked first and foremost at the recovery of these children via the least intrusive methods – and that, primarily would consist of intense behavior therapy! Only persons truly knowledgeable in issues related to autism – issues of diet, immune system malfunctions, opiate effects, etc. – working closely with parents, could truly do what was in the best interest of these children, and as such, of society overall… there was, indeed, much to be learned from autistic children, but it could not be at the expense of their well being – and the potential for that was huge!
Parents had to be united in requesting third party testing and research facilities - facilities whose focus would first and foremost be, the recovery of these children via behavior therapy methods that would first and foremost look to understand the brain through the use of specialized teaching tools using “alternative sensory input”.
A great deal could be learned by simply providing that “alternative sensory information” and seeing how the autistic child reacted from a behavioral, social, emotional, and physical perspective. Brain scans and, pharmaceutical products, especially should only be considered as “last resorts”.
The government complained each year of escalating health care costs, but, quite frankly, given the fact that the government was so closely tied to the pharmaceutical industry, in so many ways, I now wondered if those “complaints” were nothing more than “smokescreens” because when you complain about costs, etc., naturally, you get allocated more tax dollars – for “costs” and “research” too, of course, to further help reduce those ever-escalating costs – research that all too often, was conducted at public institutions/universities and subsidized or worked hand-in-hand with pharmaceutical research, too! That vicious money wheel ran not only corporate America – in my opinion, it ran our government institutions, as well!
As parents, therefore, before we took any of these “brain studies” - past or future - into serious consideration, or trusted anyone other than ourselves to do what was in the best interest of our children, we had to ask ourselves some very serious questions and that included always questioning who was truly funding “the labs” behind so many of what were “half truth” studies! And, I do mean the lab, overall…not just a particular research study. Sure - the government provided grants, but, if 20% of my funding came from the government, and the other 80% from pharmaceuticals, would a scientist really jeopardize his “lab” by saying anything bad about a particular pharmaceutical or product in even a government funded study? The fact that the pharmaceutical industry contributed so heavily to Washington made me skeptical not only of pharmaceutical funded studies but of government funded studies as well. I had serious reservations that either group could be “impartial” in its findings on issues related to the autism – and especially, vaccinations! Money spoke loudly and it was a well-known fact that the pharmaceuticals had a very strong hand and powerful voice in Washington.
A "critical" study, I suspected, probably would not get too much press and would probably be shown as having “inconclusive results”. Inconclusive results, after all, had a benefit in and of themselves…they were a reason to request more government funding without offending other major contributors. It was unfortunate, but, I feared, perhaps too often true!
I cautioned all parents to carefully criticize "studies" that seemed to show, for example, that the autistic responded favorably to certain drugs. Too often, the study was presented as: "Autistic children greatly improved in this area when given this drug"... and what these studies fail to tell you was that this "improvement" would have been seen in ANY child with the same issue. For example, studies that showed "aggression" was greatly reduced in studies with autistic children when given a particular drug often failed to mention that this particular drug was actually a tranquilizer - so, yes - I would expect to see "reduced aggression" in an autistic child given this drug... but then, I would also expect to see that in ANY child too - not just the autistic!
Indeed, when it came to autism, there was a huge need in this field, in my opinion - a need for independent research…where a lab was not funded at all by pharmaceuticals or government agencies involved in vaccination programs where conflicts of interest were sure to fog one’s judgment. Only then would many of the half-truths that had been put forward as "fact", such as the whole issue of the scientific community even being able to define the “at rest brain”, be a little closer to the actual truth.
The benefits of technology such as MRI could only be understood from an understanding of its limitations as well, and, I would argue, also with an understanding of the many, many limitations of man himself in truly understanding the countless, complex issues that go on within the human brain!
We cannot order men to see the truth or prohibit them from indulging in error.
Max Planck, Philosophy of Physics, 1936
Seeing things in a new light was indeed difficult for man, but that was how science moved forward. Man did not always think the Earth was round! Theories came and went every day! Persons in science who were really looking for the truth would continue to seek the truth and those who attempted to hide the truth would eventually be revealed as well.
MRI technology was indeed quite fascinating and in the future, it would continue to greatly add to our understanding of the human brain, however, I for one, truly believed MRI itself was only in its infancy...and undoubtedly would have many growing pains to go through before any concrete conclusions could really be drawn when it came to brain processes. MRIs would continue to reveal fascinating things, however, cool technology with a possible answer years, perhaps decades away did little to help save our children now... and, as parents, we needed the biggest “bang for our buck” and we needed to do what best helped save our children - today!
As such, I encouraged all parents stand together in requesting that government funding be provided primarily where it could do the most good - in the areas of dietary intervention, immune system research and behavior therapy. These areas were having impacts - today - for these children. The pharmaceuticals could continue to fund their MRI research and go through the painstaking studies necessary to learn more about the human brain. Of course, that task would be much harder if autistic children, the key to so much more than autism, were not allowed by their parents to participate in brain studies, at all because of issues with distrust and possible lack of integrity due to the fact that resistance to investigating the possible autism-vaccination link by the pharmaceuticals, and indeed, by the government itself, had been so strong! Rebuilding a trust so blatantly violated, was going to be a huge undertaking indeed! The government and indeed the pharmaceuticals would have to take drastic steps in order to even begin rebuilding that trust.
For autistic children – and truly – for anyone with an illness or disability, time was of the essence. Parents needed to place greater emphasis on those things that worked rather than waiting for science to finally sort all this out... because that, indeed, could take a very long time, especially given the lack of trust among those involved in the autism-vaccination debate.
The issue of the “at rest brain” and “all those brain studies” was one I hoped parents of the autistic, especially, and society overall, were now more informed and critical about.
The “at rest brain” was an interesting issue indeed. I would argue that, physically, the body could be “regenerated” greatly from 20 or 30 minute “power naps” – that had indeed been proven. However, what too many scientist considered the “at rest brain”, the brain “apparently not involved in a task at the moment” may indeed be the “most active brain of all”! As such, I believed much of what we “thought we knew” in terms of the brain’s structure and function was now - out the window. If our underlying assumptions as to what truly constituted an “at rest brain” were incorrect, surely, “results” based on those assumptions would likely be incorrect as well.
I had many siblings... and I valued each and every one of their opinions. One of the more "laid back" of my siblings, an elementary school teacher, as I joked with her about the fact that she took a lot of “power naps”, once replied: "Rest is work, too!ã" Like my brother's comment on the "at rest brain", how true my sister's comment on “rest", especially as it pertained to any "at rest brain".
Finally, I wanted to briefly address the issue of sedation or anesthesia in the autistic child. It was a well-known fact that sedation was often difficult to achieve with autistic children. As such, I wondered if “stronger” sedatives were being used on these children in order to get EEGs, MRIs or perform surgical procedures, etc. I had serious concerns in this area of sedation of the autistic as it related to “how” children were being sedated in terms of the strength of the sedative. The fact that so many were difficult to sedate should be a warning bell in an of itself in terms of something being wrong when it comes to autistic children and the procedure of sedation.
I also wondered how studies using sedated children could possibly make the claim that EEGs obtained were “good” and were void of any “drug effect”. How could anyone possibly make that claim? We know so very little about the human brain that I doubt we could say that any “scan” obtained or any EEG reading was void of a drug effect. In my opinion, that was a rather “large leap” on the part of science! If we truly can not identify the “at rest brain”, how could we even begin to say whether or not that brain scan or image or EEG reading was void of any “drug effect”? In my opinion, the simple truth was that such “conclusions” were merely assumptions. But, what if those assumptions were incorrect?
In closing, I would hope that readers did remember the key statements provided in this section in terms of the defining of the "at rest brain" and the fact that:
The benefits of technology, such as MRI, could only fully be understood through understanding its limitations as well!!!