Bits And Pieces… The Sense Of Smell… The Loss Of Self… The Loss Of Reality
Bits and pieces… there was no doubt that there were indeed many pieces to this puzzle, and yet, although some of the “bigger pieces”, perhaps some of the more obvious ones, had been put in place by science I knew there were many more pieces to place…
I also knew that often, it was something simple… something small… something overlooked that could also hold critical keys. What had I not looked at?
Always critical was “history” – I had looked at that!
Brain development… I had looked at the very basics there, too – although I certainly was no neurologist. Neurology had always fascinated me… but this was such a vast area and we still knew so little about so much. I would spend more time on neurology later, but there had to be something else… there had to be something - more obvious – something I had missed that I could look at in attempting to understand my son, but - what?
I had gone over what I had seen as the “basics” in terms of autism. It was then that it occurred to me that sometimes, the answer was not in “what was there” – but in - what was missing!
What was missing in autism? According to our mental illness classification system as it related to the distinction between autism and schizophrenia, the obvious thing – was delusions – often found in schizophrenia, but considered rather “absent” in autism! Delusions were present in both schizophrenia and Alzheimer’s.
I had serious doubts about whether or not we could actually accurately detect the presence or absence of delusions in children with autism, given fifty percent of these children were non-verbal and given the fact that so many were in their own world, unresponsive, or lacked communication skills and undoubtedly, the knowledge to even express the experience of “delusions” to anyone else. Could children with autism be experiencing hallucinations and/or delusions? In my opinion – absolutely! How would we, truly, be able to know for sure?
In the first book I had written, Saving Zachary: The Death And Rebirth Of A Family Coping With Autism, I had stated:
“Having read everything we did, Fred and I felt Karyn Seroussi’s book explained so much of what we saw in Zachary...so many of his symptoms. We pinned our hopes on dietary intervention. If gluten and casein acted like drugs or some other hallucinogen on Zachary’s body, I was prepared to do everything to remove those “drugs” from his system. That theory most certainly would explain why these children with autism, like Zachary, acted as though they were in a “drug-induced”, almost “trance-like state”. That was probably why so many of these children woke up screaming at night, most likely experiencing “bad” hallucinations. It potentially explained why so many children hit themselves on the head, hit their eyes and ears and hated to be touched. Were they trying to do away with what they were “seeing” in their brains, what to them, appeared to be no less than a “demonic reality”? After all, many a person who was high on drugs was afraid to be touched…afraid that the demons they saw in their heads were also those trying to physically grab onto them. Not all “drug trips” were good. It all seemed to make sense now. It was not “lack of bonding” with the mother that was the problem for these children...holding therapy, I thought to myself, would not take away the “demons” these children must see inside their heads. I had to take the “demons” out!”…
and this… also taken from my first book…
“It just seemed to make so much sense now - so much seemed to be “explained”. I now understood why Zachary woke up several times during the night and often could not be comforted in spite of hours of rocking. Not all “drug induced” trips were “good” and it was possible he was “seeing” things in his head that scared him. That certainly would explain why so many of these children did not like to be held. Zachary was probably afraid that what he was “seeing” in his head, those “things” were now trying to get a hold of him…even though I was the one physically holding Zachary, some “monster” in his head may have been what Zachary perceived as the “thing” trying to get a hold of him – his reality.” [end of quote – Saving Zachary: The Death And Rebirth Of A Family Coping With Autism].
In my second book, Breaking The Code To Remove The Shackles Of Autism: When The Parts Are Not Understood And The Whole Is Lost!, I had also written an entire chapter on imaginary play in the child with autism and my concerns in this area. At the time, I had not yet looked at the history of the mental illnesses we knew as autism, schizophrenia and Alzheimer’s. Yet, in my heart, I felt there were, already signs in Zachary and other children with autism that I had known that made me suspect Zachary could very much develop schizophrenia in adulthood. This particular chapter, I had entitled: The Potential Danger Of Imaginary Play In The Autistic Child… The Slippery Slope… That Could Lead To… Adult Schizophrenia.
Given I now knew that the concept of self and imagination were both located in the frontal lobe, I now, more than ever had concerns for these children when it came to “imaginary play” and “reality”. For so long we had been told that children with autism appeared unable to “pretend”… what I had seen in my own son made me believe that this could not be further from the truth – that perhaps these children had simply taken “pretending” to a whole new level – a new level that could very much result in the loss of the concept of - self!
Imaginary play… the concept of self… a delusion… losing one’s – self! …believing that you were someone or, - something - else… the inability to distinguish truth or reality from the non-real…brain structure and function… so much now seemed to fall into place!
Looking back, as I thought about Zachary, fighting me so violently as I tried so desperately to rock and comfort him – while he was clearly awake, and terrified – his eyes fixed - staring into space as if something was actually there – there was no doubt in my mind that he could very well have been experiencing hallucinations and/or delusions.
If there was something I now truly wanted to understand when it came to mental illness, it had to be hallucinations and delusions!
Hallucinations certainly could be explained by a “drug-like effect” on the brain – produced by casein or gluten.
Delusions seemed to be associated more with the concept of self or loss of it and were, in my opinion the one thing society seemed to most closely associate with the “craziness” of schizophrenia. In my heart, I knew there had to be an answer, a logical reason to delusions – something other than the fact that these people were simply - “crazy”.
The fact that persons with schizophrenia were known to see and hear things that simply were not there was something that had always made people think of those suffering from schizophrenia as “crazy”. But, now schizophrenia was but “another shade” of autism… another part on the life spectrum of this disorder that had now so completely consumed my life.
The NARSAD article came back into focus… that article that had so miserably attempted to show that there indeed existed a difference between autism and schizophrenia. In this article the following statement had been made:
“As the autistic child gets older, a small percentage improve and function well. The majority, however, take on the characteristics of adult schizophrenia with an emphasis on "negative" symptoms (i.e. withdrawal, flattened emotions, poverty of thoughts), rather than "Positive" symptoms (i.e. delusions, hallucinations)” [end of quote, emphasis added: Anne Brown and Rebecca Weaver, How Related Are Autism and Childhood Schizophrenia? NARSAD, http://www.narsad.org/news/newsletter/specialreports/fall98related.html].
Thus, it appeared that delusions were not something children with autism generally developed as they became more like those diagnosed with “schizophrenia” – that children with autism would have more of an “emphasis” on “negative” symptoms of schizophrenia – things like withdrawal, flattened emotion, poverty of thoughts.
Well, given children with autism today had been exposed to much more compressed and aggressive vaccination schedules at a much younger age and given these children appeared to suffer from iron overload, I suspected this “trend” could very well change in the future with more and more children with autism developing delusions (more on delusions later).
As I read this quote from the NARSAD article, I thought to myself – Zachary must clearly already have “schizophrenia” – since he already had all those “negative symptoms” associated with schizophrenia – hence again, the argument as to why these disorders were truly, one and the same!
Autism, schizophrenia and Alzheimer’s were all disorders where even the experts agreed symptoms varied among those affected – they could or could not be there – it just depended on the particular person. Thus, presence or absence of delusions, surely was not enough to classify these disorders as separate and distinct – in addition to the fact that I very much believed the experts - really – had no way of knowing if a child with autism could be experiencing delusions!
Clearly, however, a common link to all these disorders – autism, schizophrenia and Alzheimer’s – was the very painful fact that all too often, there was a loss of the concept of self or a very, very weak concept of self.
The concept of self required more than simply the ability to recognize your “self” in the mirror or in pictures. You had to have the awareness to know that you were a person – an individual – with a specific place and role in life and the awareness to know that you were unique – in more than simply a physical way.
For example, although the face of a fire victim could be very changed after such a tragedy, the physical – the face itself – did not constitute the self. A person whose face had been devastated could still look in the mirror and recognize that although the face was different – this was still the same person. Hence, the sense of “self” had much more to do with the non-physical than the physical. The sense of self was much more than a function of the “physical” person – it was a function of the inner person. Inability to recognize oneself – physically – appeared to be a sign of parietal lobe damage. Somatosensory processing was found in the parietal lobe. Loss of “the self”, however, appeared to be a sign of frontal lobe damage.
To have a concept of self, it certainly helped if one had the ability to recognize the “self” in the mirror, and in pictures. Yet, even without the ability to see or a distortion in one’s facial features, the “self” truly, was a function of the person within. A blind person still had a concept of “self”, for example. As such, if the concept of “self” was lost it had nothing to do with the “physical or visual” but more to do with the inner workings of the human body/brain.
In order to discuss matters as they related specifically to the brain and the concept of self, however, I needed to provide for all readers the brief overview of brain structure and function I had originally provided in my second book, Breaking The Code To Remove The Shackles Of Autism: When The Parts Are Not Understood And The Whole Is Lost! In that book, I had come to the conclusion that a great deal of what I had seen in my son could actually be explained if I assumed little or no communication among the various parts of the brain. Given that so many critical neurotransmitters were at abnormal levels, the fact that scientists now believed that glial cells – the brain’s scaffolding – were potentially weakened by viruses and given the University of Calgary experiment showing neural degeneration due to low level mercury exposure, this assumption, was in reality, perhaps not as “crazy” as it sounded.
This overview of brain structure and function had been kept at a very, very basic level. Truly, these materials were simple enough that a high school student could understand them, and yet this basic understanding of brain structure and function held the keys to understanding so much.
The human brain had two hemispheres (left and right) joined by a mass of fibers in the middle, known as the corpus callosum. This mass of fibers, the corpus callosum, allowed the two hemispheres to speak to one another. The two hemispheres of the human brain were further subdivided into regions called “lobes”. Specifically, the brain had four lobes:
Such were the basic functions within these major sections of the brain. The following provided a basic view of what happened if damage occurred to one of these areas.
Science now knew a great deal in terms of what we saw if specific parts of the brain were damaged. The following provided a brief summary of this information.
Although I would not
attempt to cover all parts of the brain, there were a few other key areas that
also helped to explain so much.
Now – let us assume little or no communication among the various parts of the brain in order to determine what appeared to be explained by “my theory” that the various parts of the brain were acting almost independently from one another!
I strongly encouraged readers to print or copy these three pages having to do with the overview of the brain structure and function. This would simplify “following along” in the discussions that now followed, or you could “memorize” these pages – something I encouraged all parents of children with autism to do. :o)
The concept of “self” – something so critical to each person - would be considered first.
A newborn infant appeared to have very little, if any, “concept of self” at birth. Yet, as time went on, the child realized that he had hands, feet, and so on. He realized he had a voice and in no time realized he could use that voice in a loud way – a cry - to get what he wanted. The fact was, however, that these were not things the child was necessarily aware of “at birth” – these were things that “developed” over time!
The “concept of self” was believed to be located in the frontal lobe – along with other higher thought or functioning.
In order to have a concept of self, it would stand to reason that one also had to have a “memory of self” - a memory that if I moved my hand, I could “do something” – a memory that I could – at will – control my movements – a memory that only I could actually “control” my body parts – and eventually, an awareness and memory that only I could control my thoughts.
This last point was the most critical. One could be paralyzed or blind and have a concept of “self”. But, the thing that set a person apart from anyone else, was the ability of that person to control his/her thoughts. What one thought, and/or the ability to control those thoughts, therefore, very much was the critical factor involved in one’s “concept of self” – at least in my opinion.
In order to truly have a concept of “self” – concept of “self” (frontal lobe) and “memory of self” (temporal lobe/hippocampus) - it seemed - had to be somehow connected – and there had to be the ability to control one’s thoughts! In addition, as discussed in my second book, Breaking The Code To Remove The Shackles Of Autism: When The Parts Are Not Understood And The Whole Is Lost!, in order to have a concept of “self” you had to have a “label” for “self” – and that label was “your name”.
A person’s “name” allowed an individual to categorize himself in relation to others. Without that “label” for myself – how could one possibly categorize himself in relation to those all about? Without an understanding of “my label” – “my name” – as it related to “my self” – there was nothing to distinguish “the categorization” of “my self” from the categorization of “anyone else” around me. Much as we categorized “other people”, so too, did it appear we needed to be able to “categorize” – our “self” – as it related to others. Without that proper categorization my “self” became no more important than that of someone else. Without that proper understanding of “my self” – “my label” – “my name” - in relation to others – would I not become but another “other” to be categorized – one among the many “people” – simply another reference in a databank with no distinction being made as to “my self”, “my voice”, “my face” from that of anyone else! Thus, in order to have a concept of “self” one had to – in a very personal way – come to associate “his label” – “his name” – with “his actions”, “his thoughts”, “his senses”, “his perceptions”, etc. and be able to classify these as belonging to “himself” – as being under “his control”.
Control – was truly key in this. In teaching the concept of “self”, perhaps one of the best tools available was to teach that the difference between “Zachary and someone else” was that only “Zachary” (again, I used Zachary’s name as much as possible instead of pronouns) had the ability to decide how to move his hands, when to talk, what to think, what to do, etc. I had to show Zachary that he was very much “in control” – of “his self” – “his body” – “his thoughts” – “his person” – overall – and to do that required he have an understanding of “his label” - “his name” and a memory of “his self”!
In my second book, I recalled how I had taught Zachary his name via the use of motion (a function co-located with the concept of “self” I the frontal lobe). I had simply taken my hand and placed it on Zachary saying: “This is Zachary” and then place my hand on my chest saying: “This is mommy”… I had done that until I knew he finally understood “his name” – “his label”.
Although the concept of self resided in the frontal lobe, memory, resided in the temporal lobe/hippocampus parts of the brain. As such, if I had little or no connection among those parts of the brain, I could – potentially – have no memory, of – “self”. When one then considered that face and voice recognition were also located in the temporal lobe, along with memory and, – apart from the concept of self located in the frontal lobe – the harsh realities of the implications of all this began to come into focus.
Without a memory of self or the ability to recognize voices and faces – including my own – it clearly became evident that if little or no communication existed between the frontal and temporal lobes, one certainly could have a very, very weak “concept of self”.
But, unfortunately, this was not where the problem ended. Also important to the concept of self were the senses of touch and vision. When a normal person “touched” his hands, his face, or any other part of his body, that person knew that these “belonged to him”. The concept of “self” as it related to the sense of touch was clearly there. Yet, if I were correct in saying that there appeared to exist little or no communication among the various parts of the brain, that would mean that a person suffering from autism or schizophrenia or Alzheimer’s would not be able to properly relay information from parietal lobe functions (i.e., touch perception) to the frontal lobe – where the concept of “self” resided and hence it certainly would make sense that as a result of that, the person would not have that normal “awareness” that the “touching” was “of the self - by the self”.
Again, this certainly would explain a great deal of what we saw in autism, schizophrenia and Alzheimer’s… children and adults… at times, so very afraid to be touched – by anyone – including themselves – or anything – including their own clothing.
What about visual processing? Visual processing was done in the occipital lobe, located at the back of the brain. The recognition of the physical self appeared associated with the parietal lobe. If information were not properly flowing to the temporal lobe/hippocampus (memory of self) and frontal lobe (concept of self), it certainly would make perfect sense – again – that one would be unable to recognize himself in the mirror or know “his self”.
The inability to recognize yourself in the mirror certainly could help explain why so many persons with mental illness suffered from paranoia. After all, if one did not recognize the “self” in the mirror, would that not mean that a “stranger” was in the house? Given this “stranger” was “looking at them” from within the mirror, would that not lead one to think that “someone” could – potentially – be “after them”?
This next issue was perhaps among the most troubling for me and involved the concept of “self” – a function in the frontal lobe - as it related to the ability to distinguish between truth and a lie - a function located in the temporal lobe. What exactly was “truth” verses “a lie”? Was it not – in effect – the ability to distinguish between the “real” and the “not real”? In my opinion, it was. As such, if functions as they related to the concept of “self” were located in the frontal lobe and the ability to tell the difference between truth and a lie – or the real and the non-real – were in the temporal lobe, and if those two parts of the brain were not properly communicating – again, it would very much stand to reason that one would have difficulty in having an “awareness” of “self” as that related to the “real” and “non-real”.
In considering “imagination” as it related to the concept of “self”, a few things needed to be considered. First was the fact that like concept of “self” – imagination – considered a “higher thought” function – was also located in the frontal lobe. Yet, the ability to distinguish between “truth and a lie” or the “real and the non-real” was located in the temporal lobe. Again, if there existed little or no communication between the frontal and temporal lobe – this made for a potentially very nasty situation indeed.
Yet, there was also something else that had to be taken into account when looking at issues as they related to the concept of “self” and “imagination”. This particular issue had to do with the fact that because of the limited communication among the various parts of the brain, there appeared to be heightened communication or magnified communication within various lobes of the brain. By this, I meant that those functions co-located within the frontal lobe, for example, seemed to be “talking to each other” more than they appeared to be under “normal” circumstances. In my opinion, this appeared to hold true for all major sections of the brain.
It certainly would make sense that if the brain had limited communication among the various parts of the brain that the brain would attempt to compensate via heightened communication within the one area of the brain where things were normally “grouped together”. This certainly would explain a great deal of what we saw in autism also. But, for now, let us focus only on the concept of “self” as it related to “imagination” functions also located in the frontal lobe.
It appeared that the brain formed “more connections” the more it was used. If indeed communication was “heightened” or “magnified” as a result of “more communication” within one part of the brain, could that not potentially mean that those areas dealing with the concept of “self” and “imagination” – both in the frontal lobe – could become – potentially – more “intertwined or inter-related”? In my opinion, the potential certainly was there and the fact that the ability to distinguish between truth and a lie or the real and the non-real was located not in the frontal lobe, but in the temporal lobe, again, certainly, would have the makings of a very nasty situation.
The fact that many parents were pointing the finger to vaccines as the cause of their child’s autism combined with the fact that the University of Calgary had shown that after exposure to mercury, neurons went on to form “neurofibrillary tangles” only made matters worse. If exposure to mercury had indeed resulted in the devastation of neurons in children with autism or persons with Alzheimer’s or schizophrenia, and those neurons then went on to become “tangled”, would the fact that the concept of “self” and “imagination” were in the same lobe – the frontal lobe – also not have potentially devastating consequences in terms of a person’s concept of “self”. Again that certainly could be the case. If neurons relating to the concept of “self” became “entangled” with neurons relating to “imagination”, as those neurons continued to grow and connect surely, the result had the potential for being catastrophic – with a person, potentially losing not only his sense of “self” but also his sense of reality – unable to distinguish himself (frontal lobe) from the imaginary world (frontal lobe) verses the real world (temporal lobe function).
Take for example the simple act of watching television as it related to “reality perception”. In my opinion, the difficulty in distinguishing between “the real” and the “non-real” in television had to do with many factors. In watching television, there could be anything from “animation” to “real people” (i.e., documentaries, news, etc.) doing things that looked “very real”. I knew Zachary lived “via reference” and as such the difficulty in distinguishing between reality and the “non-real” as it related to television, surely, had to have something to do with the fact that television provided a “moving reference” or “moving target” – with some things “real” and others “make believe”. For a person who lived “via reference”, until the ability to understand the difference was there, this certainly posed a significant dilemma in terms of “reality perception”.
I had found the best thing to help Zachary with this issue was simply to tell him that things on television were “pretend”. Yes, some were “real” in the sense that “live people” were speaking and appearing on television, however, until Zachary could better understand these issues, it was much more appropriate for him to just see these as “pretend” – after all, the person “in the television” was not “really there” and as such, saying that things on television were “pretend” was a lot more accurate than to say they were “real” – and for a child with a weak sense of self and a weak sense of reality, the implications of allowing “confusion” to go on, were much more serious than to just approach the entire issue – at least for now – as “just pretend”.
I had been very careful to define for Zachary what “pretend” was by giving him very concrete examples of “pretend” verses “real” (more on this later).
If indeed functions were magnified within one part of the brain as a result of damage preventing proper communication among the various parts of the brain – with or without the complication of neurofibrillary tangles – “with neurofibrillary tangles”, obviously, “a worse” condition – what did that mean in terms of all other functions within one section of the brain? Again, let us consider the implications of this in terms of the concept of “self”.
Neurofibrillary tangles had been observed by the University of Calgary team in their experiment showing how low level mercury exposure resulted in neural degeneration. This experiment had without a doubt shown that damage could occur in the brain as a result of mercury exposure – very serious damage. Let us now take a look at the implications of brain damage.
Frontal lobe damage was known to result in paralysis, difficulty in problem solving and sequencing, the inability to produce or express language, the lack of flexibility or spontaneity, persistent or obsessive thought/behavior, the inability to focus (attention deficit), changes in social behavior and mood or emotion variability.
Damage to the temporal lobe was known to result in selective attention in terms of sight and sound, difficulty in understanding the spoken word, issues with interest in sexual behavior, short term memory loss and interference with the formation of long term memories, emotional issues (i.e., increased aggression, etc.), difficulty in face/voice recognition, categorization issues and persistent talking if damage was to the right of the temporal lobe.
Damage to the parietal lobe resulted in the inability to attend to more than one object at a time, a lack of awareness of one’s body parts and/or surroundings, difficulty in focusing visual attention, reading difficulty, difficulty with spatial processing, difficulty with eye-hand coordination and/or drawing of objects, difficulty in differentiating between left and right, difficulty in locating words in terms of writing, difficulty with associations (i.e., naming of objects).
Damage to the occipital lobe resulted in problems with vision as they related to identifying colors, locating objects in one’s environment, illusions (including hallucinations), the inability to recognize words (issues with reading/writing/recognition of symbols/drawings, etc.), and difficulty with objects in motion.
Clearly, almost all of these were seen in persons with autism, schizophrenia and Alzheimer’s – indicating overall brain damage in these persons – again, making me rather suspicious of any “genetic link” to all this.
Particularly troubling in these descriptions of “damage” to specific parts of the brain was damage to the frontal lobe as it related to “obsessive or persistent thought/behavior” – especially given my theory that 1) functions within a specific part of the brain may be much more inter-related than man may have ever believed and 2) that communication within a specific part of the brain seemed to be greatly magnified, 3) that various parts of the brain appeared to be working almost independently of one another in persons suffering from autism, schizophrenia and Alzheimer’s.
Let us look specifically at the implications of damage to the frontal lobe as it related to “obsessive or persistent thought/behavior” and the concept of “self”.
The most obvious problem I saw had to do with the fact that the concept of “self” and “imagination” were co-located in the frontal lobe, whereas “memory of self”, face/voice recognition, and - most critical of all – the ability to distinguish between truth and a lie – or the “real and the non-real” were located in the temporal lobe. Not only was my suspicion of limited or no communication among these parts of the brain rather troubling – in and of itself – but, also in my opinion, damage to the frontal lobe, resulting in obsessive-compulsive thoughts or behaviors were even more troubling.
If one had a weak concept of “self” to start with and had difficulty in distinguishing between the “real and the not real”, how much more magnified would be that weakness in the concept of “self” and that inability to distinguish between the “real and non-real” if my thoughts were persistently “reinforcing” a low concept of “self” or persistently reinforcing my inability to distinguish between “the real and non-real”? Tie in the fact that motor functions were also located in the frontal lobe – and this made for a nasty, nasty situation.
Although many experts believed that children with autism had difficulty with “pretend play” these children had simply taken “pretend play” to an entirely new level – a level that resulted in the loss of “self”. I discussed these matters at great length in my second book, Breaking The Code To Remove The Shackles of Autism: When The Parts Are Not Understood And The Whole Is Lost! This was a book I had made available – for free - and posted in full for all families of persons with autism, schizophrenia and Alzheimer’s – on my website at: www.autismhelpforyou.com. I strongly encouraged all families to read this book as I truly felt it would help you understand perhaps many, many more pieces to your individual puzzle as well.
I had seen “pretend play” in my son as well as in other children with autism. And what I had seen, truly, for me, was a great source of concern. I was very much of the opinion that persons with a weak sense of “self” – a function co-located with “imagination” in the frontal lobe yet located apart from the ability to distinguish between truth and a lie (the real or the non-real) – a function located in the temporal lobe – were very much at risk of further losing their concept of “self” via “pretend play” or the mixing of “imagination and self” – with potentially, no “reality check” available due to what I believed was limited communication among these various parts of the brain.
In my opinion, “pretend play” in the child with autism was not “pretend play” – but in my opinion, it appeared “pretend play” became the assuming of the “pretend” as “reality”!
Already I had seen hints of this in my son and as such, I was always making sure, in any “pretend play” – no matter how minute – that he clearly understood the difference between “pretend play” and “the real”.
As much as I had tried to limit pretend play in Zachary, I had, by now, come to the realization that limiting this behavior was almost impossible. Suppressing “pretend play” by preventing it – by distracting Zachary whenever he engaged in pretend play – I now saw, was not the answer. This was impossible to do. How could one possibly stop someone from “imagining” something physically via pretend play? How could one possibly control the thoughts of another individual?
This also brought up the fact that “imagination” could be expressed physically, as in pretend play, or could be simply a mental function, with no physical expression whatsoever. As such, to try to suppress “pretending” – I soon came to realize – truly, could not be done because that meant I would have to have the ability to actually control Zachary’s thoughts! As such, it was clearly evident, in my opinion the only option was to focus on the “understanding” of pretend verses real!
Perhaps the best example of this had to do with Zachary’s love of trucks. He often went around the house “pretending” he was a truck – making truck noises, and pushing things out of his way with a cardboard flap taken from a box as he pretended he was a bulldozer, and/or a dump truck etc. As I observed Zachary playing this way, however, I soon had the very uneasy feeling that this was more than “simply pretending”. Zachary was also saying: “I’m a truck… I’m a truck… I’m a truck” as he went about doing this.
In a normal child, that would not have been reason for concern. Yet, in understanding what I now did about the fact that the concept of “self” and imagination resided in one part of the brain – and the ability to distinguish between truth and a lie or the “real and the not real” was in another part of the brain, and based on my very strong suspicions that these parts of the brain were not properly communicating with one another, but that there could be magnified communication within a lobe, I very quickly became concerned with what I was seeing. It was that “mother’s instinct” kicking in that – “something” just was not right in all this.
As I observed my son, I literally felt that Zachary – in reality – in his mind, “became” the truck – that it was more than simply “pretending” – that it was actually a “becoming” – a change in “who he was” – in my opinion, a very, potentially dangerous change – very much impacting his concept of “self” and his “grip of reality”!
It was in that instant that I came to the realization that in children with autism and in my opinion, persons with schizophrenia and Alzheimer’s – the weak concept of “self” – perhaps – could literally be “overtaken” by the “pretend” – by the “imaginary” – by the “non-real”. The fact that the University of Calgary had confirmed neurofibrillary tangles resulted after neural exposure to mercury only solidified my concerns. The potential for neurons dealing with the concept of “self” to become “entangled” with neurons dealing with “imagination” – in my opinion – certainly was there – as was the potential for future growth in these neurons resulting in “more entanglement” between the concept of “self” and the “imaginary” – with potentially, no ability to distinguish the two if my suspicions of little of no communication among the various parts of the brain were correct – because the ability to distinguish between truth and a lie – the real and the non-real – clearly resided not in the frontal lobe – but in the temporal lobe! In my opinion, there was no doubt that the potential existed for the pretend or non-real – the imaginary – to be merged with reality – leaving the child or afflicted person unable to distinguish the two!
Obviously, in view of this, I, personally, was very much against teaching children with autism "to pretend" in behavior therapy without making it very clear "what pretend was" and "what reality was" because for these children this was a very, very dangerous game and one that had to be monitored very, very, closely by a person who understood the implications of all this!
The potential devastation for my son – once again – had become so very painfully obvious to me! My only hope was in constantly making sure that Zachary remained grounded in reality. In order to do that I had to ensure he had a strong understanding of “the real” verses the “non-real” and of “who he was” – he had to have a strong concept of self – of his “real self” - there was, in my mind, simply no denying it! Zachary also needed the ability to control his thoughts to maintain his “real” sense of “self”.
I now painfully realized that something – pretend play - something so many had considered “absent” in children with autism, was in reality not - “absent” - but was there all along, as a very dangerous foe - simply waiting to be awakened. Research had indicated that children with autism seemed to have difficulty “telling a lie”. In my opinion, it was not “difficulty in telling a lie” that was “a problem” – in the sense that this “function” was missing. Perhaps, the issue was simply one of not yet having been provided with a “reference” as to “how” to lie of having that understanding that you could “say something” that was “not true”!
Note that language production (saying) was in the frontal lobe and the ability to distinguish between truth and a lie was in the temporal lobe. Once “lying” had been modeled – once a child had seen someone doing something or saying something that was not true – and the child knew it not to be true – in my opinion, that critical “reference” had been provided and as such, I very much believed that these children could “learn to lie” – that it was just a matter of being provided an example of this – a reference.
In my second book, Breaking The Code To Remove The Shackles Of Autism: When The Parts Are Not Understood And The Whole Is Lost! I had very much stated that pretty well everything I saw in Zachary, I could explain based on his “reference living” and “reference communication”. In my opinion, children with autism literally – lived by reference – with everything consisting of “drawing from a pre-existing database”. Thus, if a reference did not exist in “the database” – such as “pretending” or “lying” – until that reference was “provided” – the entire concept – literally was non-existent – in my opinion, explaining why “pretending” or “lying” did not come “naturally” to these children.
Previous references appeared to take precedence over new references – hence, certainly contributing to the strong “need for sameness” in everything for so many of these children. Yet this “need for sameness” – the routine – was exactly what these children did not need!
In my opinion, the only way to “get away” from “this way or that way” type of living – reference living – was to provide multiple references – and that meant, new ways of doing things – new ways of looking at things – lots of choices and lots of options – in everything. In my opinion, it was not that these children did not have the ability to “pretend” or to “lie” as much as perhaps the fact that they had not been provided with “a reference” as to “how to” pretend or lie.
As I watched Zachary play, and this realization had come to me, I resolved then and there to work very hard with Zachary on this issue. In anything that I saw involving “the pretend” and “his concept of self”, I would to the best of my abilities ensure he always had a grasp of the “real and non-real”.
As Zachary went around pretending he was a truck – before my eyes, potentially – becoming – a truck, I walked up to him and asked: “Zachary, are you really a truck or are you just pretending to be a truck?” As I asked him this question, I placed emphasis on the words “really” and “just pretending to be”. Of course, not to my surprise – he answered “yes”. I then confirmed the “yes”… by saying: “Yes, what?”… “Are you really a truck… or just pretending”? Again, not to my surprise, he answered… “really a truck”.
I then proceeded to show Zachary that – really – he was not a truck – that – really – he was only – pretending to be – a truck. Luckily for me, on this particular day, Zachary had been “a dump truck”. This was an easy one. I simply asked Zachary if he had a load of sand on his back and told him to “dump the sand”. Zachary quickly realized he did not have “sand” or a “bucket” behind him and hence, that he really was not a dump truck. I then stated: “You don’t have any sand… and you don’t have a bucket… so, you are not - really – a truck… you are just - pretending – you are really – Zachary – nnnnnot a truck…”. I had now provided that critical – label – the difference between “real and pretend”. Zachary now understood – the difference – between real and pretend. He would continue to “pretend” but now, when I said: “Are you really a truck… or just pretending?”… He could now respond – “just pretending”. I always reinforced the concept by asking him, “Well, who are you?” and I always made sure, he could answer with “his label” – “I’m Zachary” – a “reality check” – for Zachary – and for me!
Functions within the frontal lobe included the following: motor activity, motor planning and execution, activity in response to the environment, memory as it related to motor habits and other motor activities, olfactory cortex, language production, higher functioning (concept of self, imagination, etc.), control of emotions, assignment of meaning to words (i.e., word associations).
Of these, the most obvious as it related to the concept of self were probably functions that related to motor activities. There was an old saying that “actions speak louder than words”. In other words, your motives and actions and indeed “who you were” was very much a function of “what you did”. The type of person you were was very much defined by your actions. An alcoholic was defined by his “drunken behavior”, etc.
Not only were you defined by your actions, but your memories as they related to those actions also very much played a role into your concept of “self”. In spite of anything anyone else believed about you, your actions and your memory of those actions, especially “repetitive” type actions or behaviors, truly defined the type of person you were.
It was important to note that these “memory for motor activities” functions found in the frontal lobe were associated with “learned motor activities”. Other memory functions (long term, short term memory acquisition, etc.), those memories not associated with learned motor functions – were located elsewhere in the brain – in the temporal lobe/hippocampus area. Thus, these “motor activities” in the frontal lobe appeared to be related more to habits and “repeated”, learned activities.
Also located in the frontal lobe, along with the concept of “self” was the olfactory cortex – or sense of smell. Although man has long believed that the sense of smell was a primitive sense this was a very under-estimated sense and I truly did believe that it played a great role in one’s sense of “smell”. If you considered the animal world, the sense of smell very much played a role in defining “who was who”. As a child, there was nothing I found more comforting than sleeping on my mother’s pillow and sensing the “smell of my mother” even though she was not there. The sense of smell between mother and child, and as it related to the concept of “self” in my opinion, was truly underestimated (more on this later).
Control of emotions was also located in the frontal lobe along with the concept of “self”. This again truly contributed to the definition of the “self”. People were often defined by their ability to control their emotions (i.e., hot heads, etc.). Note that although the control of emotions resided in the frontal lobe – along with the concept of “self” – emotions themselves resided elsewhere – in the area of the temporal lobe/amygdale. Thus, again, if little or no communication existed between the frontal lobe and these other areas, potentially one could experience an emotion and be unable to control it!
Sensation of emotion, expression of emotion, control and perception of emotion, clearly, were all areas of difficulty for persons afflicted with autism, schizophrenia or Alzheimer’s.
I had also found it interesting that control of emotions was co-located with production of speech given the fact that it was well known that often, persons who experienced great trauma often – literally - lost the ability to speak. Was it possible that trauma resulted in a loss of control over emotions and that this had something to do with the production of language itself? Just how was “control of emotions” tied to actual language production? The experience of a strong emotion or emotion in general seemed to be located in the temporal lobe/amygdale area of the brain. Also located in the temporal lobe was the “understanding of language”. Did the experience of a strong emotion have anything to do with the “blank” stares so often given when one experienced trauma – that apparent “inability” to understand the spoken language? In my opinion, this was all very interesting indeed!
The frontal lobe also included functions relating to the assignment of meaning to words. Truly, how others “defined” us or what they “called us” had a huge implication on our concept of “self”.
In terms of language production, this was perhaps a more difficult one to understand, but there were certainly some issues there that could also relate to the concept of “self”. People were often defined by favorite phrases they used. For example, I once knew a woman who was always very calming and reassuring and her favorite phrase was “don’t sweat the small stuff”… she said that constantly. When we remember those who had died, we often remembered them by saying, “he used to say…” or “yes… that’s what he would have said…” or “he always said”…. and, hence, yes, a person could also be defined by his words.
Thus, in looking at this, it would seem to me that if one wanted to solidify the concept of “self” in a person who had very little concept of “self”, those functions found in the frontal lobe would be the best to use.
To reinforce a concept of “self” in my opinion, would require using things that made use of motion, smells, and word associations – functions that, like the concept of “self” – were located in the frontal lobe.
Making use of the sense of smell as it related to concept of “self” would tend to indicate that a “smell” as it related to the person “himself” should be rather consistent (i.e., a favorite cream or lotion, soaps, etc.). But, there were other things related to smell that could be used.
In my first book, Saving Zachary: The Death And Rebirth Of A Family Coping With Autism and second book, Breaking The Code To Remove The Shackles Of Autism: When The Parts Are Not Understood And The Whole Is Lost! I had mentioned that Zachary, as a very young child, used to love to be “sniffed” in the neck area – to this day- he still loved to be sniffed. This had always had a very “calming” effect for Zachary - note that, like “smell”, control of emotion was located in frontal lobe. As I completed my second book, I had become convinced that “smell” was truly underestimated and that this was a critical sense in many, many, matters – and in my opinion, one of these was definitely - the sense of “self”.
The following was a quote from my first book taken from the very end of a chapter I had entitled Signs So Easily Missed Or Dismissed. I had now underlined what, looking back, were in my opinion, critical points worth noting:
“Zachary’s sense of smell did not seem to be affected, other than his general dislike for any new food. He just had to look at a new food and would turn away. Of course, I had no way of proving whether or not he could smell it from far away and smelling it was why he would run off as opposed to a visual cue of something being new. The one thing about his sense of smell I did notice from quite early on was that he liked to be “sniffed” around the ears, in his hair, on his tummy, and especially, around the neck. Actually, “sniffing” him often served as a method of calming him down. If he got upset, often all I had to do was to start sniffing him around the neck and he would calm right down. This actually also helped him to fall asleep. I never thought much of anything other than the fact that it was kind of “cute”. In fact, he “sniffed” my neck and ears first and that was how I came to recognize and use this behavior to calm him down.” [end of quote from Saving Zachary: The Death And Rebirth Of A Family Coping With Autism].
And this… a quote from my second book as it related to “sniffing”…
“I know understood this behavior. It had been Zachary’s first attempts at actually communicating with me. Since the sense of smell was the only sensory input available to the frontal lobe, that lobe responsible for language production, Zachary’s sniffing had been, in my opinion, his attempt at communicating with me.
This also explained why later in life, he came to absolutely love the children’s show Bear In The Big Blue House, because – almost always – at the beginning of that show, the “bear” sniffed around and said: “hey… what’s that smell? … it’s you!” as he moved so close to the camera that the “bear’s nose” covered the entire television screen. Thus, clearly, Zachary was relating to the use of smell for communication purposes! Zachary’s “sniffing” (and mine) were almost identical to that of this “bear”… a few quick sniffs (anywhere from 3 to 5), done all at once.
I now believed the sense of smell was greatly underutilized in humans. Interestingly, the sense of smell was the only “sense” not processed in the thalamus – the gateway for relaying central and peripheral nervous system information.” [end of quote from Breaking The Code To Remove The Shackles Of Autism: When The Parts Are Not Understood And The Whole Is Lost!]
I decided to do a little test – totally unscientific, of course – just a fun, silly thing again - to test my hypothesis. On this particular morning, Zachary had come into my bedroom for his usual morning hugging. He had done this pretty well every morning although, lately, I had noticed that he was becoming slightly more independent and that “mommy kisses and hugs” in the morning, were no longer as critical as they used to be. Now, with increasing frequency, Zachary would simply find his way to the living room and start to play. But, on this particular morning, he had felt the need for some “mommy hugs and kisses”.
I usually tried to spend time working on eye contact during this time. Inevitably though, Zachary always seemed to find his way a little closer to me. He particularly loved to cuddle by my neck… as he had always done. As Zachary cuddled along with me, I asked him: “Zachary, what is better – a sniff or a hug?”
Amazingly – he answered – “a sniff”! We played a little more and I asked him the same question again – same answer! A few minutes later I asked his father to come into the room and ask him the same question. He did - and got the same answer!
There was a time where I would have found this "odd", but now, given that I believed smell had been very underestimated in its importance in the life of humans, and given what I had come to see and understand in Zachary, it actually made sense... the sense of smell was located in the same lobe (frontal) with "language production" and control of emotions and motor activity.
There was also some olfactory processing in temporal lobe where you found some functions as they related to emotions and understanding of language. Zachary's first attempts at communicating with me – I was convinced - were via the sense of smell.
Also rather interesting was the fact that I, personally, absolutely could not stand having my nose touched by anyone whereas Zachary loved to have his nose touched. As I giggled to myself as I thought about this unusual or odd aspect to my personality, I wondered if - again – it could have something to do with a possible relationship between the sense of smell and the sense of “self”. If the two were indeed closely related, that certainly could explain why I absolutely hated my nose to be touched and yet, Zachary loved it when someone touched his nose. I had a very strong sense of “self” – Zachary’s was still “limited” although he had made tremendous progress in this area.
Zachary, I had always known to have a very sensitive sense of smell. He could smell things and run from them well before I could even get close enough to make him at least “try” to eat something new. Yet, recently, I had noticed a great deal of “touching” of his nose and “sniffing”. I knew that in all these disorders, the sense of smell was impaired. Could that be why so many children with autism who were previously “picky eaters” later came to eat or accept many more foods. Taste and smell were closely related. If smell was impaired, obviously, trying “new foods” could be “less offensive”. Could it be that initially, the sense of smell was very strong and as such, picked up many, many odors, but that as it became impaired, that somehow had impacts on other aspects of life for persons afflicted by these disorders? I truly wondered.
Smell, emotions, communications, motor activity – and the concept of “self” - perhaps a great deal more "inter-related" than we ever could imagine!
Touch – as in “hugging” was obviously also important in emotions, after all, both "touch perception” and somatosensory functions were co-located in the parietal lobe...thereby explaining why a "hug" just "felt so good". I was simply stating that unlike the importance of touch in emotions, perhaps the sense of smell had been very much overlooked not only in matters dealing with the control of emotions but also in matters as they related – to the sense of - “self”!
Truly, I believed parents of children with autism were on the “front lines” in terms of seeing how the human brain may truly function! This was all very interesting to say the least!
I was certain that neurologists or other professionals who had found their way to my website or this book, were probably ready to have a coronary… - just take a deep breath and relax… (smell and control of emotions were both in the frontal lobe). :o)
There were many other examples relating to the sense of smell and its use in control of emotions in my second book, Breaking The Code To Remove The Shackles Of Autism: When The Parts Are Not Understood And The Whole Is Lost! Yes, these were all just "my opinions and my observations"... but, it sure seemed to "fit together" – and rather nicely I may add!
After all, did man/child not inherently want to scream when on a rollercoaster (motion/language production – co-located in the frontal lobe)...did you not inherently scream when scared - or "freeze in your tracks" (emotion - here loss of control of emotions as fear sets in perhaps, production of language, and motor functioning – co-located in the frontal lobe)... did a child not inherently speak with his mouth full (smell/taste/ language production – co-located in the frontal lobe) until "taught otherwise".... and did you not just feel so great and want to just say "ah" when you came into a room that smelled wonderful due to a meal being cooked or bread being baked (smell/language production/control of emotions – co-located in the frontal lobe)... you just naturally wanted to breathe deeper... and it naturally made you "feel" better! Roses, flowers, coffee, chocolates, treats, smoking, opening a window, etc. – all smells that without a doubt helped people to “relax”, feel better or helped them control their emotions. I think if we really focused on things we did "inherently", perhaps we could truly see the workings of the human brain a lot more clearly.
"We still do not know one-thousandth of one percent of what nature has revealed to us."
“Sniffing” was an easy way to help solidify Zachary’s concept of “self”. It had been documented by science that persons with autism, schizophrenia and Alzheimer’s did have impacts to the sense of smell with the sense of smell becoming dysfunctional over time. In autism and Alzheimer’s, issues with “sniffing” were definitely there. As I neared the completion of my second book, it occurred to me that Zachary’s “sniffing” behavior when he was young could have been one of his very first attempts at communicating with me (note that language production – a means of communication – was also co-located in the frontal lobe along with the sense of smell).
As “crazy” as that sounded, more than ever, I became convinced that the sense of smell could have a great deal more to do with one’s concept of “self” than may have ever been previously imagined. Zachary’s sense of “self”, today, I knew to be much better than it had previously been. I had made a point of working on matters as they related to the sense of “self” by using the sense of smell. For example, at least once or twice a day, I would “sniff” Zachary and say: “Who is this?” with my eyes closed – further emphasizing the sense of smell. Note that in doing this, I was also using motion – another function located in the frontal lobe along with the sense of smell.
If my theory were correct, to reinforce the concept of “self” in those with autism, schizophrenia or Alzheimer’s may require making use of memories associated with “motor activity” that was “learned” via repetition, and use of other functions, co-located with the sense of “self” in the frontal lobe. This was certainly an area where “routines” could be positive, although there could obviously be a downside, too (i.e., wanting to eat the same foods only).
As such, I looked to everyday routine tasks to reinforce Zachary’s concept of self – to things like the brushing of teeth, the taking of a bath, etc. For example, as Zachary brushed his teeth, I made sure I drew attention to the fact that this was “Zachary” in the mirror. When he dressed himself in the morning, I made sure I told him things like “put on Zachary’s pants” – using his name specifically instead of the pronoun “your”. I did this because I knew persons with autism, schizophrenia and Alzheimer’s had difficulty with pronoun usage and as such, if already confused about “pronouns”, making use of “pronouns” such as “I, me, you, your, my, we, etc.) could potentially, further confuse Zachary, and as such, I specifically made reference to his name – his label - as opposed to using pronouns in most of our interaction in order to further solidify his concept of “self”! Issues with pronoun usage were discussed later – in greater detail – in this text!
In my opinion, using more functions (i.e., smell, motion, word associations – all in the frontal lobe) at once in trying to help Zachary with his sense of “self” should help solidify that sense of “self” if my theory was correct that functions within one part of the brain in children with autism were perhaps much more inter-related than man may have ever imagined.
As such, if I believed that to be the case, along with my opinion that within the child with autism, communication within one part of the brain (i.e., frontal lobe) may also be magnified, then, it made sense to use as many “functions” co-located with the sense of “self” to build or solidify the sense of “self”.
“Sniffing” Zachary with my eyes closed while I asked him: “Who is this?” provided that opportunity. This simple act used motion – as I moved about “sniffing” his neck area, and upper chest – word associations, as “who is this?” became associated with the word “Zachary” – his name – his label - used to refer to his “self”, and of course, the sense of smell itself as I physically sniffed him once or twice each day. This also provided for me a very simple daily “check” that Zachary still very much knew “who he was”. I made sure to use variations in how I asked “who this was” in order that the “reference” of “Zachary” not just be an “automatic response” to a specific phrase.
Also important to note was the fact that although the olfactory cortex was in the frontal lobe, there also existed olfactory processing in the temporal lobe – and that was where memory acquisition resided – thus, in my opinion – smell - provided one of the best opportunities to help one develop not only the concept of “self” – but a memory of “self” also provided the sense of smell had not been already significantly impaired! Along with olfactory processing, auditory processing resided in the temporal lobe – and as such, this simple phrase I used with Zachary as I sniffed him – “who is this?” or something similar to that – that verbal or auditory input – in my opinion, was an “extra” function being used to help solidify the “acquisition or memory of self” for Zachary. Other functions drawn on to help solidify the “acquisition or memory of self” were face and voice recognition and object categorization – also located in the temporal lobe along with memory acquisition functions.
As we played this game, not only did I “sniff” Zachary, but he also sniffed me in the same manner and asked: “who is this?” – of me. This helped to further solidify his concept of “self” as doing this simple exercise we engaged in allowed him to differentiate between “him” and “me”. This simple exercise provided for Zachary that all critical “label” or “reference” I had discussed in my second book – “his label”.
In my second book, I had stated that in my opinion, the child with autism was a child who lived “by reference” and that the child with autism needed a “reference” or “label” for everything in order to understand the “parts to the whole” and this included having “his reference” – “a label” – as it related to “himself” also – his label – being “his name”.
Note that “a name” was “a label” for “the self”. Thus, by using the sense of smell in “sniffing Zachary” and asking him: “Who is this?”, I not only made use of smell and motion, I also made use of word associations – also located in the frontal lobe as well as several key functions located in the temporal lobe – olfactory processing, auditory processing, memory acquisition, face and voice recognition, “categorization” of objects, and certainly to some extent, the ability to distinguish between a truth and a lie – the real or non-real as I asked “Who is this?” and required the correct response.
In playing this simple game with Zachary, I could ask: “Who is this?” and say: “Is it Anika?” (his sister) or name someone else. I could ask: “Is this a truck?” Zachary’s response would be a gauge of his sense of “reality” as well.
Particularly important, however, was also the use of not only “word associations”(frontal lobe) in terms of providing Zachary with “his label”, but, the fact that a “word association”(frontal lobe) was – in effect – a categorization (temporal lobe)! This in my opinion – was critical – again, to much, much more than simply the concept of “self”!
Word associations and categorizations, could be used to provide “a bridge” between the frontal and temporal lobes and hence, perhaps help provide a bridge overall – to all functions within these two parts of the brain since I truly believed functions within one area of the brain appeared to be much more inter-related than we could ever have imagined.
From everything I had seen in Zachary, I was absolutely convinced that he lived “via references”. This also explained why persons with autism and schizophrenia often “made up” their own words. If “no reference” was available – no “label” provided – in my opinion – they simply “made one up” in order to create a label for that “future reference”. I saw this as nothing more than an attempt to “order” or make sense of one’s world. In my opinion, word associations simply reflected language production (both frontal lobe functions) without categorization (temporal lobe function) because of the very limited or seemingly non-existent communication among these parts of the brain.
Zachary had many examples of words he had “made up” on his own. One of his more recent ones had to do with “sniffing and kissing” - something he called a “sniffkiss”. There were many such examples, however, where Zachary had simply “made up” his own “reference word” for future use.
It was a well documented fact that those with autism, schizophrenia and Alzheimer's spoke in "word associations" or “uncategorized references” – because, that really was what “word associations were” in these disorders – improperly or uncategorized references triggered by “common words” or “associated concepts”.
Again, given my theory that there was basically no communication or very little communication among the various parts of the brain and that communication within a specific region was "magnified" and that functions within a specific region could be much more closely related than we ever imagined, this too, made sense. If you looked at functions in the frontal lobe, they included language production and "word associations". Thus it was very likely that the reason those suffering from these disorders spoke in "word associations" was because they were simply drawing on their "databank" of words that were somehow linked – or associated - and that was what "came out" in "language production" – almost “automatically”. That would imply that language production functions and "word association" functions were somehow associated – and I suspected very closely associated with “word associations” somehow appearing to actually “trigger” language production.
Zachary had provided for me countless examples of speaking in “word associations”. For example, he had a video with the phrase “easy come… easy go”. Upon hearing that, he had stated: “No… not easy come… easy go… - easy stop… easy go”! To Zachary, “stop and go” went together much more than did “come and go”.
Another example involved the word “year”. For quite a while, when he heard the word “year”, he automatically said: “Happy New Year”. On another occasion, upon seeing a balloon his sister had brought for him from a restaurant, he immediately stated: “A blue balloon… it’s a party”!
In terms of word associations or what I called living via "reference communication without categorization", there were many more examples of this in Zachary. For example, I once said, "sit up, please", he answered "stand down, thank you". Thus, if sit was associated with stand (opposites), up with down, and please with thank you, his response made perfect sense. Likewise, we were once driving to a nearby town for errands. On the way we saw a truck full of green cabbages. Zachary had never seen such a thing. I pointed it out to him and said: "Look, Zachary, a truck full of green cabbage". The word "cabbage" produced the following response from Zachary: "Red cabbage, juice". Zachary had recently seen me making juice in a juicer - using red cabbage - and hence, again, this "word association" made perfect sense. Other examples included, "hot sun" - "cold moon", "cold ice" - "hot water", “wake up” – “sleep down”, etc.
Recently, I had asked Zachary if he could hear my heart beating as he put his head on my chest to hug me one morning. He answered: "Yes". I said: "That's my heart". He answered: "heart... rectangle". Two shapes. Again, “reference communication” - speaking by using associated words! Thus, his brain used one word and looked for "references" from past experiences and based on what was in his "databank" Zachary made "connections" or "associations" that truly did not belong together because clearly – his “categorization” functions – located in the temporal lobe – were not speaking with his language production and word association functions – located in the frontal lobe.
Again, there were many, many of these “word association” verbalizations I had seen in Zachary. Reference communication without proper categorization and reference living – in my opinion, there was absolutely no doubt that this explained what I had seen so often – and continued to see in my son!
With Zachary, I had always found he absolutely loved spelling. I now knew why. This was one of his greatest tools in "breaking the code" to life. For example, when by a campfire one day, Zachary noticed the sparks flying in the air as more wood was added to the fire. I said, "Zachary, watch out for the sparks". Then, I said: "Sparks - How do you spell sparks, Zachary?” This was a new word for him. He replied: "Sparks... How do you spell sparks, mom?" I spelled it for him - he repeated the word and then spelled it himself and repeated it again. That was pretty well always the routine with new words - he wanted the spelling, spelled the word himself and then committed it to memory - and voila - another piece of his world was understood and made sense of.
The interesting thing in all this was that spelling out loud was used to help him understand language. That brought me to an interesting point. Zachary could clearly understand the meaning of words I provided. That would involve hearing the word, spelling it and associating a meaning to that word. Thus, both the frontal and temporal lobe would be at play here – and thus, he had to automatically be forming “categorizations” and “word associations” himself for future reference. In my opinion, that seemed to indicate that the issue was not one of acquiring the meaning of the word – something he could easily do - but rather one of retrieving it when required. Zachary was easily able to answer: "What's that?" when I asked him "what those flying things were in the air during another campfire". So, he could retrieve the meaning of words and answer, "It's a spark" just fine. Yet, even though he understood words, and what they represented, when it came to reading and the retrieval of that information using visual input, he did not seem to understand the meaning of words nearly as well. He could read almost any word just fine (at age 5), but if I asked him a specific question about something he had just read, at least initially, he just could not seem to answer it, even if what he read was just a short sentence.
The issue was not one of “understanding” the words or the question being asked as much as it was one of going through an entire “database” of “word associations” and forgetting the initial question asked as he “got lost” in the “word association mode”. A word spoken or read could easily trigger another… that could then trigger another… that could then trigger another. And hence, in my opinion the issue for Zachary was not one of understanding words as much as it was an issue of word retrieval and given that for Zachary, “word associations” were nothing more than “words without categorization” (as you should normally have), it certainly made sense – and the root of this problem, I suspected was very much due to the fact that there existed little or no communication among the various lobes or parts of the brain.
For example, note that although language production was located in the frontal lobe – the understanding of language was located in the temporal lobe. If those parts of the brain were not communicating properly, how would you possibly come to understand language?
In my opinion, it was obvious that word associations and categorizations, provided the all necessary bridge between the frontal lobe and the temporal lobe – a necessary bridge that could be used not only in helping with the concept of “self”, but with many, many other key functions as they related to the frontal and temporal lobes – such as language.
The key to “bridging” these functions had to reside in the functions of “word associations” (frontal lobe) and “categorizations” (temporal lobe) because word associations were nothing more than a form of categorization!
This simple concept had potentially, absolutely huge implications for the person suffering from mental illness and for teaching or reaching that person or any person who had lost speech as a result of brain injury!
I had no doubt that functions involving smells (frontal lobe and temporal lobe) were somehow tied also to language production (frontal lobe) and the understanding of language (temporal lobe) and that “smell” could perhaps provide an additional “bridging” mechanism between these parts of the brain.
In thinking about this particular issue, I thought of a newborn and his first breath. For example, why was it that the first breath of an infant seemed to trigger “crying” – the first “language production” in humans? Could a child not take his “first breath” – something that made use of the sense of smell – without crying? Why was it that the child had to cry? Why did the child not simply “breathe deeply”? Did that, in itself not imply that breathing – an act that involved the sense of smell – was somehow tied to language production?
Although some would perhaps argue that crying helped one to take in more oxygen, I would argue that this was indeed not the case. Most persons I had seen crying – especially when crying very deeply – experienced difficulty in breathing – crying did not, in my opinion help breathing – it appeared to hinder it! There could be no denying that when a person cried, the nasal passages clogged up and one had to blow his nose in order to facilitate breathing. I had shed enough tears over autism to at least have that basic understanding. In my opinion, it very much did appear to be the case that the sense of smell – and hence – crying in newborns – an act that involved the nose and lungs – could actually help trigger speech production by somehow activating the vocal cords! If that were true, then the question became – what smell – what gas could trigger language? Could it be oxygen? With “oxidative stress” everywhere in these disorders, I could not help but wonder how oxygen metabolism was affected in those with autism, schizophrenia and Alzheimer’s. Heme deficiency seemed tied to so much and given that hemoglobin was the oxygen-carrying component of blood, I certainly wondered about the role of oxygen in all this. Vitamin E, known to help protect against “too much oxygen” had also been shown beneficial in these disorders.
The simple “sniffing” exercises I did with Zachary, that in my opinion, had implications for his sense of self, also had implications for functions located in the parietal lobe (sense of touch, etc.) as well as in the occipital lobe (sense of vision) since Zachary could still “feel” me as I sniffed him and could very much have “his eyes open” while we played this simple game – a game he absolutely loved!
In my opinion, in developing not only the concept of “self”, but in helping children with autism or others impacted by such disorders was to draw on functions co-located with the function a person was attempting to work on or solidify in the afflicted person while simultaneously drawing on as many functions in other regions of the brain to help generate “associations” there too as they related to the task at hand. In my opinion, this was true for absolutely everything in Zachary’s life.
Thus, although the concept of “self” was often quite weak in persons with autism, schizophrenia or Alzheimer’s – in my opinion, there were certainly ways to solidify that concept of “self” for the afflicted person by using co-located functions and/or similar functions across various regions!
In my opinion, all of these issues as they related to the concept of “self” in persons suffering form autism, schizophrenia and Alzheimer’s definitely played into this puzzle… but still, I felt there had to be more – especially as all this related to the one thing seen as the “craziness” in schizophrenia – delusions!
If the issues were only issues of the concept of “self” being lost as a result of the merging of the “real and non-real” and as a result of the fact that there appeared to exist little or no communication among the various lobes of the brain – if that were true, then, delusions should not “come and go” – in my opinion, they would be more of a “constant” – there – pretty well the entire time. Yet, clearly, persons with schizophrenia were not completely delusional – they did not completely lose their sense of “self” - all the time! Granted, persons with schizophrenia could certainly vary a great deal in terms of how severely impacted they were, with some experiencing more delusions, and others, less. I had no doubt that everything discussed above as it related to the concept of “self” played into this… but there had to be more!
From everything I had seen in Zachary, I was absolutely convinced that Zachary lived via “references” and that his life could very much be explained by the “retrieving the appropriate reference from his databank of references” – his brain. If a reference “was missing” or was inappropriate for the situation, it mattered not – words only needed to have been somehow associated in the past – and even one past association – was enough to burn some kind of “a reference” in Zachary’s memory. Equally important was the fact that it appeared once a reference was made it was difficult to change it – to build new references. It certainly could be done, but in my opinion, this was, especially initially, a more difficult task for Zachary – the expanding of references for the same situation. It was as if, for Zachary, there was only one way to respond – at least until shown that there could be “other ways” that worked too – and those “other ways” could be easily accepted or very, painfully resisted – it truly depended on the situation and how solid that “past reference” had been as well as on my ability to communicate the “new reference” or “variation in a previous reference”.
When it came to matters involving the concept of “self”, I soon realized that memory of “self” and recognition of your label – your name – as it related to providing a reference for that “self” was absolutely critical. Without the understanding of your personal “label” – your name – truly, you – your “self – was lost among the many other voices and faces in your databank – and was no different from any other.
If indeed one saw himself in the mirror (occipital lobe), but that information failed to be properly communicated and integrated within the information located in the parietal and frontal lobes as it related to the “self” along with information in the temporal lobe/hippocampus as it related to the “memory of self”, a reflection in the mirror, indeed could be but another reference in the database – absolutely no different from any other.
References to be included in the “databank” of faces and voices to be recognized could come from anywhere – situations that were both real – and unreal. For example, they could come from social situations, family situations, etc., but they could also come from television. In the case of television, the matter was further complicated by the fact that certain things on television could be “real” while others were not. Certain persons seen on television, such as the President, reporters, etc. were real, yet others were completely fictional. In my opinion, it would be difficult indeed for a person to distinguish the two if there existed little or no communication among the various parts of the brain.
Yet, persons - fictional or non-fictional - were faces and voices that could be remembered – burned into the memory and made part of database entries drawn on for future reference purposes. Memories were interesting in that they appeared to be more easily formed when either repetition or emotion were involved. Thus, those persons who became “most recognized” could potentially, be those most seen or heard on television or the radio.
If that “reference databank”, for example, included the faces or voices of prominent persons that had been burned into memory it certainly was possible – especially based on the fact that neurofibrillary tangles were known to exist in Alzheimer’s and after mercury exposure – that the memories of these prominent persons could – literally - become entangled with memories of the “self” as these neurons intermixed and continued to grow. Thus, faces and voices that had only been once seen or heard, that had previously only been “references” to draw on - now, – literally – had the potential of becoming part of the “self”. In my opinion, it very much stood to reason that perhaps the strongest association with “self” was provided by that face and voice for which there were more previously existing memories (repetition solidified memories) or strong emotions (also shown to solidify memories) associated with the memory or reference – more previously existing references since that would have meant more neurons had – literally - been associated with that person or memory.
Delusions certainly were considered one of the hallmarks of schizophrenia. Although those delusions were often associated with prominent persons, they were also often associated with matters involving religion and/or the occult. Unfortunately, as stated earlier, “past reference” to be drawn on in the future could be as simple as a movie one had seen or a sermon one had heard in church if there had been intense emotion associated with that experience because the presence or absence of emotion very much helped solidify memories – or “references”.
There was no denying that a spiritual experience could involve intense emotion – as could a movie involving the occult. Persons with schizophrenia often believed “they were God”. ". Interestingly, if you looked at the time at which most persons were diagnosed with Schizophrenia (between early teens up to 40s), that certainly would be the period in one's life during which matters of spirituality could come into play - for anyone. Given that obsessive thought was a sign of frontal lobe damage, I certainly could see how one's "obsessive thoughts" could be in matters of spirituality for those afflicted with schizophrenia.
Indeed, anyone who had been to a church or listened to a church service on the radio had most likely heard the fact that "God lives within you". For a person with schizophrenia that certainly could provide a powerful message indeed. It was true that God lived within us, but for the person with schizophrenia that statement became a greater "reality" than it would be for a "normal person".
For the person with schizophrenia given the weak concept of “self”, and the fact that matters of spirituality usually surface during the period/age when one would be diagnosed with schizophrenia, I could certainly see why the "concept of self" would include delusions that one was God and/or preoccupation with other "spiritual issues" or the occult. When you then considered the fact that the ability to distinguish between truth and a lie resided in the temporal lobe along with face/voice recognition, but that the concept of “self” resided in the frontal lobe, along with imagination it was certainly possible that a person with schizophrenia could honestly believe they were God.
In addition to becoming more aware of spiritual matters during the time period during which a diagnosis of "schizophrenia" would be made, there were "other things" we become aware of as we grew older. For example, as a child, we may not have noticed our adoring parents watching and enjoying us as we played. Yet, as we grew older, we became very aware that "others were watching" because we realized that we were part of a "society" and as such, were expected to behave in a socially acceptable manner. Failure to do so often resulted in reprimanding – or at the very least – a “look” by someone offended by the behavior. Thus, again, what a person was "aware of" during the different stages of life certainly could play a role in what was manifested in autism verses schizophrenia, verses Alzheimer's.
In my opinion, there was no denying that Zachary lived “by reference” and I very much suspected this was also the case for persons suffering from schizophrenia and Alzheimer’s.
To have a "reference" meant one had a "databank" to draw from.... in this case, a databank of faces, voices, - things said by certain persons, etc. – all of which somehow became categorized – whether accurately or not.
In working with Zachary, it had become painfully evident that “just a word” was enough to trigger a databank reference – and “any” reference previously associated with that “one word” – was enough to make that reference “fair game” in retrieval functions. It mattered not if the reference was appropriate or not for the situation – all that mattered was the fact that at some point in time, a reference joining a “key word” had been made to something else and that “something else” had the potential for retrieval in the future. The retrieval of “references”, however, was very much influenced by chronology. For example, first references, from what I had seen in Zachary, were the most powerful and most easily retrieved.
This made perfect sense. When one considered temporal lobe functions, they included, among others, “categorizations” along with auditory processing, emotion, memory acquisition, and the understanding of language. Of these, obviously, categorization was key. In a “normal” person, life consisted of a categorization of life experiences, emotions, etc. and that categorization was very much a function of time!
We categorized things as they related to our childhood, verses our adolescence, verses our later years. Furthermore, in addition to classifying our lives as a function of time, we classified “our life” as a function of the emotions associated with “those things” that had happened in our lives. Indeed, when considering those functions found in the temporal lobe, one can not help but come to the conclusion that all these functions were very key to “categorization” of those things that happened over the course of a lifetime - things smelled, things heard, faces, voices, emotions, memories – all of these were critical to how we categorized “our life”.
Equally, important was the fact that two very specific functions existed - or were co-located - in the frontal lobe. These functions were functions relating to “word associations” and production of language. Word associations provided the “trigger” for the “databank” retrieval to be performed and hence, the language production.
Time and time again, I had seen this in Zachary – on countless occasions. The best example I could provide was the following – an example I would simply reproduce here – an example taken from my second book- Breaking The Code To Remove The Shackles Of Autism: When The Parts Are Not Understood And The Whole Is Lost!
“I usually said: "sit down" when I told him to sit in his chair to start working on his computer. On this day, he was already sitting, but, he was very slouched, almost to the point of falling off the chair. So, of course, I said: "sit up, please". When I said that, he replied: "stand down, thank you".
He was making "opposite associations" in trying to understand his world. If the word "up" went with sit, then, obviously, to him, the word "down" had to go with the word “stand” and likewise, the word “please” had to go with “thank you”. Obviously, to counter such reasoning, I must admit was rather difficult for me at first. I simply decided to "show Zachary" the act of "sitting up" and to then show him that you could not "stand down". Instead, I showed him "lay down", "stand up", etc.
Zachary had been trying to “combine words” to figure out how they fit together in order to provide for himself a “reference” he could draw on in the future. These attempts at figuring out how words fit together and how they could be used in the future, I came to call “reference communication” since Zachary created for himself “references” of how words could be used for future use!” [end of quote from Breaking The Code To Remove The Shackles Of Autism: When The Parts Are Not Understood And The Whole Is Lost!].
This example best illustrated that Zachary, indeed, lived by reference and word associations. As I thought about this over time, another thing occurred to me – Zachary had stated: “stand down, thank you” – it appeared to me – without even taking the time to think about his reply – it was in my view – automatic! It was as if he did not even have to think about what he had said – upon hearing “sit up, please” he had automatically responded “stand down, thank you” – in an instant. This, too was critical and truly indicative of how language production appeared to work within Zachary. The words I had stated had generated an apparently automatic retrieval – for each word – of opposites – with it seemed to me, no thought being given to the process itself as it related to appropriateness for the situation. What had for so long been referred to as “nonsense language” now held the keys to unraveling how to produce language in these children – language production, I became convinced – was a function of word association! It was that “automatic retrieval” resulting in actual, almost instantaneous verbalization or language production that had – without a doubt – convinced me of that! It was critical to note that word associations (frontal lobe) were nothing more than a type of categorization (temporal lobe)!
Thus, to get a child to talk the best way to do so, in my opinion, was to use word associations – especially things like opposites – and to work from there to “expand” associations or speech production. In addition, working with colors and objects as “word associations”, I also believed could be most valuable (i.e., using the word red and at the same time showing “red objects” like apples, etc.). Given that I believed functions within a region were much more inter-related than we may have imagined, I could certainly also see things like “smell” being helpful in language production (i.e., not only saying “red” and showing a “red” apple as one said “red”, but also allowing the child to “smell” the apple to help solidify the word association). Finally, I would also include motion in attempting to build these word associations (i.e., just the act of smelling an apple was a “motion” and given motion was co-located in the frontal lobe with smell, language production and word associations, I believed it was key to “draw” on as many co-located functions as possible).
The key was to begin to at least “build references” that could be understood and drawn upon for language production and using as many co-located functions to do so and as many “bridging functions” as well to help in starting to build bridges and new neural connections across the various parts of the brain.
Thought insertions, so commonly seen in schizophrenia could also involve a similar “retrieval process” – whereby a past databank was drawn upon. Here, it almost seemed as though different parts of the brain were involved – functions in both the temporal and frontal lobe – functions as they related to word associations, language production, motor functions and the concept of “self” – all in the frontal lobe - as well as functions as they related to memories, auditory processing, emotion, understanding of language, face/voice recognition, the ability to distinguish between truth and a lie and most key of all – categorization! Thought insertions could result from “bad or inappropriate, and quite possibly interwoven databank retrievals” – interwoven in the sense that neurons could physically be intermixed together – neurofibrillary tangles – and as such result in “inappropriate categorizations” of one’s thoughts, motions, emotions, etc.
As I thought about all these issues a little more, it became clear to me that “thought insertions" were perhaps, explained also by issues with improper working of the cerebellum - yes - another "cerebellum" connection – that part of the brain known to be so clearly impacted in autism!
The cerebellum was now known to coordinate not only motions but, "higher thoughts". Those "higher thoughts" were located in the frontal lobe and the frontal lobe included matters relating to the "sense of self". The fact that "imagination" was also in the frontal lobe would only make matters worse. As such "thought insertions" were the result of a combination of improper communication especially between the cerebellum and the frontal lobe in addition to improper communication between the frontal and temporal lobes!
Given I believed persons with autism, schizophrenia and Alzheimer’s lived “via reference” they certainly could store "the thoughts or utterances" of others and categorize them for "future use" much as one would categorize anything else. When another person “said something", even if just one word that, potentially, could trigger the "databank retrieval" and “search” for all potential "associations" - with an emphasis or priority given to earliest associations.
This certainly had major implications for the concept of “self” given one was very much defined not only by his thoughts but, by the ability to control his thoughts! If my “thoughts” were “references” based on something previously heard said by someone else, then, my thoughts – in reality – would not be my own but those of someone else!
Indeed, in Zachary, I had often seen his language production work in this manner – just as in the “sit up, please – stand down, thank you” example. In this particular instance, the language production had “ended there” – but, in others, the “word association” retrievals had been much more extensive – going from one subject to the next – with seemingly no regard at all for the appropriateness of the retrieval. Language production, I had seen in Zachary, was much more a function of word associations than anything!
The degree of recall I had seen in Zachary was also fascinating. He had an absolutely fantastic memory – for so many things. A “normal” person, in all likelihood, only remembered “relevant things” or “important things” and paid little attention to the “non-real” in terms of memories. Indeed, as I thought about what I remembered in life, the things I remembered most, the things that seemed to comprise the “bulk” of my memories – were things that had actually happened – things that had “been real”.
Yet, in a person with schizophrenia, for example, if it were difficult to distinguish between the real and the non-real, would memories involve both – almost equally? Would the real and non-real become so intertwined that they could no longer be distinguished leading to completely inappropriate and inaccurate “database retrievals”. Had persons with schizophrenia taken “references” and memories to a whole new level – and this was what the rest of us saw as “thought insertions”? I truly wondered!
Not only did there exist in my opinion, issues with associations, but our thought patterns changed over life also, and as such, those things that would become "obsessive thoughts" (resulting from frontal lobe damage) would possibly change over time too. This helped to explain why we saw what we did in the various "phases" of this disorder - based on age!
A child, for example, was not as concerned with what others thought or said as would be someone who was older. But, when that line was crossed and the child lost his egocentric world and realized he was part of a society, what others thought and said did matter more. As such, I could certainly see why these things – the utterances of others – the verbalization of the thoughts of others - would be included in one's "databank" in later years.
When you considered the fact that the brain was known to undergo huge changes in terms of "reorganization" and "pruning" - depending on current experiences in deciding what to "keep" or "prune" - a few more critical things could perhaps be understood. If a person underwent that "reorganization" and "pruning" and yet had a very weak concept of “self”, by the time that "reorganization and pruning" occurred, what would that mean in terms of when one was diagnosed with schizophrenia as this related to delusions and the "insertion of thoughts"?
In other words, if current thought patterns were what appeared most important in determining what to “keep” and what to “prune” and current thought patterns were delusional, "inserted" or obsessive, would those not be "kept" and thereby become perhaps worse over time? I truly wondered as to the role of the reorganization of the brain as it related to delusions, thought insertions, concept of “self”, etc.!
Interestingly, the sense of smell (olfactory) was located in the frontal lobe along with the concept of self. But, olfactory functions were located in both the frontal and temporal lobe.
We now knew that the olfactory bulb (sense of smell) and hippocampus (memory) continued to generate new cells - perhaps as late as age seventy or more. In fact, Dr. Fred Gage and co-workers had shown new cell growth continued in the hippocampus in patients/humans aged from fifty-five to seventy. In animal studies, new cells were constantly being generated within the hippocampus and neocortex of adult monkeys (Gould et al., 1999).
Given the olfactory bulb, according to research done by Dr. Fred Gage was now known to generate new cells well into adult life, could the sense of smell have a tremendous yet underestimated role in the development of the concept of “self” and memory formation - overall?
After all, as the physical self changed over time - as did the physical self of those around us, one would need to maintain a sense of "self" and of "others" (i.e., to recognize a long lost relative, etc.). Could that be done via the sense of smell and cells in the olfactory processing and via new cell generation in the hippocampus - the area of the brain associated with the formation of memories? In my opinion, it was certainly a possibility.
The more I look into matters relating to the possible role of the sense of smell, the more I found it absolutely fascinating. It was a well-known fact that people were usually more depressed in the winter and had "spring fever" - that intense feeling of "being alive" and "wanting to go out to enjoy a beautiful day" in the spring. The spring brought with it so many “beautiful smells”. The control of emotions was located in the frontal lobe along with the sense of smell. As such, given that there were fewer smells in the winter and a great many pleasing smells in the spring, again, it seemed that the sense of smell certainly could play a critical role in the control of emotions.
There could indeed be a great deal of truth to the statement: Take time to smell the roses - in matters relating to one's enjoyment and overall wellbeing. Was this also why so many people felt they needed to "head south" for the winter? Certainly, there was the allure of heat in the winter – but was the allure of smells in warm climates perhaps not underestimated? It was certainly interesting that the sense of smell was co-located in the frontal lobe along with motor activity, planning and execution – and as such I wondered how smell impacted our motor activities also.
It was also a very well documented fact that those with schizophrenia were more than likely smokers. Up to ninety percent of the schizophrenia population was believed to smoke. It was believed that this was due to "emotional control" factors, and perhaps to neurotransmitter level changes resulting from smoking that simply made schizophrenics “feel better” when they smoked. But, the fact remained that smoking was very much a motor activity that involved the sense of smell for control of emotion (three frontal lobe functions).
In my opinion, if the sense of smell was indeed tied to the concept of “self” – as I very much believed it was, could smoking have a positive impact on some parts of the frontal lobe (i.e., control of emotions), and yet have potentially devastating impacts on others (i.e., concept of “self”, etc.) by perhaps destroying the sense of smell and/or taste?
In the animal kingdom, the sense of smell certainly played a major role in the "whos who" world. A great many with schizophrenia also abused alcohol... another "sense of smell/taste" and "sense of self" impacting activity. Indeed, the smoking/alcohol link had long been established. If a person engaged in one, they were more than not likely to engage in the other as well. Indeed, olfactory dysfunction had been well documented in those with schizophrenia, as well as in those with autism and Alzheimer’s.
But, these factors did remain facts: 1) the vast majority of persons with schizophrenia smoked, 2) they did have olfactory system damage 3) the olfactory cortex was located in the same lobe as the sense of self and 4) the sense of “self” seemed to be the thing most impacted in schizophrenia and 5) the olfactory bulb, normally, continued to produce cells late into life, as did the hippocampus – that part of the brain associated with memory.
Although the frontal lobe was associated with both sense of “self” and olfactory functions, olfactory functions also resided in the temporal lobe. Although this was purely another theory on my part, I wondered if those olfactory functions in the temporal lobe had more to do with the recognition of others as opposed to perhaps contributing to the sense of “self” – as I believed was the case for olfactory functions in the frontal lobe. The reason I stated this was because co-located with olfactory functions in the temporal lobe were auditory processing, as well as face and voice recognition – functions that although important to “the self” appeared to greatly involve – others! Could olfactory functions in the temporal lobe thus be more for the identification of others and not necessarily for the recognition of “self”? Granted, face and voice recognition were definitely a “nice to have” for the recognition of “self” also, but, were they critical? In my opinion – no.
I could be mute and still have a sense of "self" (frontal lobe) and still have the ability to recognize others (temporal lobe). I could be deaf (temporal lobe) and still have a sense of self (frontal lobe) and still have the ability to recognize others (temporal lobe). But, if I had an impaired sense of smell (damage in the frontal lobe) would I still have the same sense of "self"? If I had damage to olfactory processing in the temporal lobe, would I still have the ability to recognize others? Those were truly fascinating questions!
Could the loss of the sense of smell somehow explain why those with Alzheimer’s, lost not only their sense of “self” but their ability to recognize others as well. A person with Alzheimer’s would not have as many new olfactory cells produced as would a younger person with say autism or schizophrenia. Could “smell” possibly be tied to our sense of “self” and our ability to recognize “others” in our life? In my opinion, this certainly was again – very interesting.
If the sense of smell were indeed critical to our sense of “self” and our ability to recognize others, would olfactory dysfunction not be a good predictor of Alzheimer’s later in life? Could one be considered more “at risk" for such disorders based on changes in one's olfactory processing?
These were certainly interesting topics and areas for scientific research - at least in my opinion - especially as the pharmaceutical industry considers moving to "nasal spray type vaccines". What would "nasal spray flu vaccines " for example, do to the olfactory processes, the sense of smell and so many other functions that may be impacted by the sense of smell - like the sense of self!!! Note the olfactory processes bypasses the thalamus... and olfactory input went "straight to the cerebral cortex, the lungs and the heart"!!! The olfactory passages were also tied to the auditory passages. When one had an ear infection, there was always a concern of the infection impacting the sinus cavities, leading to sinus infections, or infection of the throat and/or lungs! Could this lead to upper respiratory infections and/or pneumonia?
The fact that the sense of smell could play a large role in the sense of “self” was becoming more and more evident to me as I continued to research so many issues relating to my son’s autism. I knew that Zachary had a very, very sensitive sense of smell. Any new food, he ran away from before I could even get close enough to just have him “smell it”. It had taken me a great deal of work to just get him to “smell” something new and although he was finally more open to such suggestions, he still had a very long way to go.
The sense of smell… the sense of self… both in the frontal lobe… a part of the brain so controlled by the cerebellum – the very part of the brain so well documented as being “abnormal” in autism!
The cerebellum needed over twenty years to reach maturity. I now very much suspected that the cerebellum also played a key role in schizophrenia. The study performed by Dr. Jay Geidd of the National Institute Of Mental Health had shown tremendous gray matter loss in schizophrenia during adolescence – the exact time at which the brain underwent the pruning and reorganization functions we now knew to exist. Most importantly, however, was the fact that this gray matter loss in schizophrenia had clearly been shown to flow in a wave-like fashion – from back to front.
In a normal brain, gray matter developed in a wave-like manner – from back to front also.
Gray matter development… back to front… gray matter loss in schizophrenia… back to front… the cerebellum… at the back of the head… the frontal lobe… at the front!
The cerebellum was now known to be involved in the control and organization of thoughts and motions. In schizophrenia, it was often reported that persons with schizophrenia “knew their body parts were moving” but they attributed the motion to someone else's doing. Just as in the case of “thought insertion” – in thinking that someone else controlled their thoughts - so too, they often believed that their motions were controlled by someone else. Note again, both higher thoughts and motions were co-located in the frontal lobe – that part of the brain so very much controlled by the cerebellum.
Thus, thoughts and motions were "confused" or "disjointed" in terms of who was doing the thinking and who was doing the moving. In my opinion, this was simply another shade of the same thing - disorganized thoughts and motions combined with very limited sense of “self”, and cerebellum damage/malfunction.
Many with schizophrenia also stated that they felt they were literally unable to talk without moving certain parts of their body (i.e., their hands, head, etc.). Again, this made sense if my theory of co-located functions being much more inter-related than we may have ever imagined were correct since language production (actually speaking) and motor activity (i.e., “talking with your hands”) were both in the frontal lobe and hence, motion, was somehow tied to language production.
This also explained “monotone speech” so often seen in schizophrenia, autism and Alzheimer's. Control of emotion certainly played a role in verbal expressions. Control of emotion and language production resided together in the frontal lobe. As such, if emotions were "flat", would it not stand to reason that speech would be also - if my theory were correct in that the functions within various parts of the brain may be much more interrelated than we could ever have imagined?
The sense of self, smell and motion were all located in the frontal lobe. If there was damage to the cerebellum and frontal lobe (i.e., damage to the sense of smell), and my theory were correct, and the sense of smell played into the loss of "self", then, given that motor functions were also in the frontal lobe, could issues with the sense of “self” not impact thoughts on "who was performing a motion", “who was doing the thinking”, etc. Note that memory, as it related to motor activity was also located in the frontal lobe and that damage to the frontal lobe resulted in persistent thought/behavior. Thus, although incorrect in the perception of “who was doing the motion or thinking”, that incorrect perception, could, potentially – become “obsessive thought” and thereby result in a person insisting – without a doubt – that this indeed was happening – that someone else was controlling their thoughts and motions!
In my opinion, it appeared motor memory found in the frontal lobe was related, for example, to the fact that once you learned to ride a bike, you never forgot how to ride a bike, once you learned to walk, you did it automatically, etc. In my opinion, this certainly also explained why therapy methods like "hand over hand" work so well... once the first part of the motion was done... the rest seemed to follow automatically. In other words, a person that had difficulty performing certain tasks needed to be shown only the first part to a task – the first motion – and once that was done, they could “go on” to complete the “motion or task” on their own based on the memory of that previously learned task/routine/habit.
As such, it very much appeared "motor memory" in the frontal lobe was associated not with remembering "what I did at a certain time", but rather with the remembering of learned motor skills. Given the fact that the cerebellum controlled functions that appeared to be very much “learned”, it would make sense that this type of memory would also be for “learned” skills. The function of remembering "what I did, where I did it and when I did it", seemed to reside not in the frontal lobe, but in other parts of the brain such as the temporal lobe/hippocampus where short term and long term memory acquisition played a role.
As I continued to look for answers to so many issues it became clearly evident that so much in my son’s autism, as well as in schizophrenia and Alzheimer’s could potentially be explained by the fact that there existed little or no communication among the various parts of the brain but that communication within a specific region appeared to be magnified.
Cerebellum damage had clearly been implicated in autism and had also been noted in schizophrenia. In Alzheimer’s, amyloid plaques had been found in the cerebellum, yet, it appeared “more spared” than in autism or schizophrenia – surely due to the fact that by the time a person had been diagnosed with Alzheimer’s, the cerebellum had had a lifetime to mature – this, clearly, was not the case in a young child suffering from autism or a person who may have been diagnosed with schizophrenia. Yet, there was damage to other parts of the brain that had been well documented also – damage to the temporal lobe, for example, that now appeared to explain so much.
The temporal lobe included functions relating to auditory processing. It was a very well documented fact that in schizophrenia, persons report "hearing voices". In autism, children appeared “deaf”. There could be no denying that temporal lobe damage existed in all three disorders – autism, schizophrenia and Alzheimer’s.
Temporal lobe functions, as stated earlier, included auditory processing, olfactory processing, emotion (i.e., depression), understanding of language, voice/face recognition, categorization, memory acquisition, the ability to distinguish between truth and a lie (or the "real" and the "non-real"), and some visual perception.
Auditory dysfunction certainly was a “hallmark of schizophrenia”. Many persons with schizophrenia reported “hearing voices”. Indeed, this type of delusion - much like delusions dealing with the assuming of another person’s identity – were very much associated with the “craziness” so often associated with schizophrenia.
In my opinion, auditory dysfunction, again, was the result of damage to specific functions within the brain. I did not believe that persons with “schizophrenia” were “crazy” and simply hearing things that were not there. In my opinion, there had to be a logical explanation for the “hearing of things”, and I believed that to be very much a function of dysfunction in issues having to do with auditory processing, voice recognition, categorization and the ability to distinguish between truth and a lie – all functions located within the temporal lobe.
In my opinion, this was more of a “retrieval” issue as had been Zachary’s word association issue in the production of language. By this, I meant that issues as they related to the categorization of voices, memories, the ability to distinguish between truth and a lie (the real and non-real), and auditory processing had to be involved in the “hearing of voices”.
If indeed neurofibrillary tangles existed and these functions somehow became “tangled”, would it not make sense that auditory delusions could be happening. Could magnified or heightened communication among functions within specific regions (i.e., temporal lobe) previously thought “less associated”, become much more associated as the brain formed more connections within one region?
Delusions were truly an area of great concern for me. I had spent a great deal of time trying to understand them. Unfortunately, when persons in society thought of schizophrenia, at times, it was believed this was “demon possession”.
Because areas of spirituality were really not well understood from a scientific perspective, they tend to be "laughed off" or "ignored", and those who spoke of "demons" and "voices" were always said to be "crazy" - and hence, the horrible stigma so undeniably associated with schizophrenia. But, could it be that those with schizophrenia were indeed on a very different level spiritually?
Most people did believe that man was somehow a spiritual being. If one had obsessive thoughts involving the occult, and those thoughts became obsessive in a person with a very limited concept of self, could that result in the opening of the "self" to forces that may very much be beyond our ability to comprehend? Man has never been able to identify a specific area in the human body or brain that was known for a fact to be "the area of spirituality" in man. Did that mean man was not a spiritual being? Obviously, not! From the most primitive to the most "developed" of cultures, spirituality was seen to play a role.
Sound crazy? Perhaps not as crazy as once thought! Delusions may very well be the result of problems with proper communication among the various parts of the brain... but, could they not include "something else, too"? Again, I asked - when the physical and/or mental “self” or the person was "lost" - as seemed to be so often the case in autism, schizophrenia, and Alzheimer’s - when one lost so much gray matter – and/or so many functions became dysfunctional - what was left functional, if not the soul?
Man was proud. If he did not understand something, he preferred to make light of it or ignore it...or "re-label" it as "something new" or "something crazy" or “something unimportant”. But, again, ability to comprehend something was not what determined whether or not that "something" existed or had any importance - and that was especially true in matters of spirituality - be they positive or negative experiences.
When it came to matters of spirituality, there was no denying that - in science - this must be one of the "grayest" areas of all - and, I suspected, many of the answers to matters relating to spirituality were well beyond man's comprehension.
Certainly, when it came to matters of spirituality, there were those in the world who believed such matters were in the realm of “delusions”, yet, although I did not personally believe that, in the end, I could not help but think that delusions had to have more to do with matters of brain dysfunction than matters of spiritual dysfunction – although spiritual “dysfunction” certainly, for some, could be an issue as well.
Did I believe that demon possession was possible? Yes – because, as a Christian, I believed the bible and in the bible demon possession was certainly said to exist. But it was possible – in anyone – not just the mentally ill. Did I believe that this was the primary reason for what we saw in schizophrenia – absolutely not!
Matters of spirituality were certainly far from being understood by man. Indeed, I would argue that the same was true of matters relating to the physical world as well.
"We still do not know one-thousandth of one percent of what nature has revealed to us."
It is a brilliant man indeed who can admit how little he truly knows! :o)
Indeed, when one puts all this together, the case for frontal lobe-cerebellum damage in combination with temporal lobe-cerebellum damage certainly appeared to be a strong one given that those with schizophrenia lost so much gray matter and it was gray matter that was associated with "higher thought functions" - which would include matters relating to the concept of “self”, spirituality and so much more! The fact that "delusions" could happen up to five hundred times a day in some who suffered from schizophrenia only further made the case for the above given that obsessive thought/behavior were signs of frontal lobe damage.
Thus, what we saw in schizophrenia – fragmented thoughts - was a "disconnection" of the “self” in matters relating to the coordination of thoughts, emotions, motor functions and so much more - and that "disconnect" in my opinion, appeared to originate in cerebellum dysfunction which coordinated or "integrated" all these functions!
Although persons with mental illness appeared to be no more likely than anyone else to commit a crime, the matters discussed in this text had some very serious implications for society - overall. For example if the various parts of the brain were not communicating properly, (i.e., those parts having to do with the concept of self, the ability to distinguish between reality and the non-real, and motor functions, memory acquisition, control of emotions, frontal lobe damage resulting in obsessive behavior/thought, etc.) one could, in my opinion – potentially – literally - commit a crime and not remember having done so.
In matters relating to the concept of self and the “loss of self”, however, it was not only the very obvious but, potentially, the not so obvious and seemingly trivial that could also very much play into this as well. For example, “pronoun confusion” – seen in autism, schizophrenia and Alzheimer’s – something as small as the improper use of the words “I, me and you” – although apparently a small or minor issue on the surface could potentially be a critical issue in matters relating to the concept of self and but one of the many manifestations of how weak the concept of self in these disorders truly was and how easily, as a result of that the “self” could – literally – be lost! The improper use of pronouns as it related to the concept of self was discussed in more depth further in this text.
Indeed, delusions had been something I had tried very hard to understand. I thought and thought about this issue – it weighed very heavily on my mind. I wanted to understand delusions so that in the event Zachary developed them I would – somehow – be able to help him cope. I had known the stigma of “autism”, the “looks” people gave Zachary upon finding out he had autism - the “looks” they gave me. Although I had no experience with the stigma of schizophrenia as of yet, I knew that society could be anything but kind when it came to schizophrenia – a disorder, more than ever, I now realized was so very, very misunderstood! The thought of Zachary completely losing his grip of reality was devastating to me. I had worked so hard to get him back – I simply could not lose him - again!
I felt I had a fairly good understanding of what might now be going on in my son in terms of what appeared to be very limited communication among the various parts of his brain, yet, as much as I now thought I understood in Zachary, I just felt there had to be something I had not seen – something I had not fully understood or something I had missed completely. There had to be – another missing piece!