What exactly was “hyperactivity”? Was hyperactivity not simply – excessive – activity or action? Excessive – motion! Interestingly, vitamin B6 played a role in adrenalin production. Adrenalin was a hormone – also known as epinephrine. According to an online reference, epinephrine was defined as followed:
One of two hormones (the other being norepinephrine) secreted by the adrenal glands, as well as at some nerve endings (see neuron), where they serve as neurotransmitters. They are similar chemically and have similar actions on the body. They increase the rate and force of heart contractions, increasing blood output and raising blood pressure. Epinephrine also stimulates breakdown of glycogen to glucose in the liver, raising blood glucose levels, and both hormones increase the level of circulating free fatty acids. All these actions ready the body for action in times of stress or danger requiring increased alertness or exertion. Epinephrine is used in medical situations incl. cardiac arrest, asthma, and acute allergic attack (see allergy). [end of quote, emphasis added, The Britannica Concise online encyclopedia, http://education.yahoo.com/search/be?lb=t&p=url%3Ae/epinephrine].
Well, again, this certainly did appear to put more pieces of the puzzle in place. B6 was required for the production of epinephrine – or adrenalin – something that was used up during stressful times. As such, B6 levels definitely appeared to be tied to the levels of production of this hormone. Epinephrine – or adrenalin – was a stimulant! That certainly would explain all that “hyperactivity” in these children! Also key, again, was the link to glucose – something tied to insulin levels!
I could not help but wonder if the increase activity in children with autism was not also an immune system response resulting from low glucose levels. If there was one thing my son appeared to have, it certainly had to be a lot of “energy” – so much so, that I wondered how much of his B6 intake was impacted by processes dealing with the production of epinephrine – or adrenalin. If indeed adrenalin – a stimulant - was produced during stressful situations (an apparently “automatic and necessary” system response, and the life of a child with autism was “a life of stress”, did it not stand to reason that these children could be “hyper” or “overactive” because of the production of adrenalin – a stimulant - as they attempted to deal with stress? Given epinephrine or adrenalin was a muscle stimulant, could it not stimulate not just the heart, but, - all muscles? That certainly could be one explanation for why these children were so active!
Also “coincidentally”, B6 was stored primarily - in muscles! Could this explain why it was believed exercise could help protect one from Alzheimer’s? Obviously, as one exercised, B6 would be released to help provide energy for the body. In my opinion, given that B6 was associated with iron, insulin and glucose levels and given it had been shown to be so helpful to children with autism, again, the “exercise link” certainly appeared to make sense, too! Also, if epinephrine was associated with the elevation of glucose levels in the body, could “hyperactivity” in these children be an actual immune system response in order to increase glucose to appropriate levels and if that indeed were the case, what would drugs used for the suppression of “hyperactivity” do to these children? Again, I truly wondered as to the implications of all this given I had seen many parents state that their children “got worse” when placed on medication! Thus, could it be that the key to reducing acitivity or “hyperactivity” in these children was not medication but the alleviation of stress?
In my opinion, this was very interesting indeed given my son’s activity levels clearly appeared to increase when his levels of stress also increased! As I thought about motor activity as it related to stress, I could not help but wonder if “hand flapping” was somehow tied to this. Although Zachary did not do much “hand flapping” to start with I had noticed two very distinct types of “hand flapping”. There was the “left to right” hand flapping, and the “up and down” hand flapping. I had not paid attention to this distinction in the past, but there was no doubt in my mind that it was there! I had always found that Zachary appeared to engage in more “hand flapping” if he ate bananas. Bananas appeared to cause more the “up and down” type of “hand flapping” in Zachary. Bananas were an excellent source of vitamin B6 – one banana providing about thirty percent of daily B6 requirements as well as an excellent source of potassium – something involved regulating the activity of all muscle tissue.
The reason I even noticed the difference in the “type of hand flapping” had to do with something Zachary had done while we were reading on my bed. As we read a story, Zachary became distracted. Zachary now read book that were for anywhere from first grade level to 3rd grade level. If a page had a lot of words on it, and he was tired, he sometimes said: “you read it mom…”, hoping that I would read the story for him. At times, I did, but most times, I usually was able to get him to continue by either saying or spelling the next word for him to provide that critical “prompt” to go on. On this particular day, I had chosen a book with a lot of text and Zachary was at a point where he really did not want to go on. He began to look away from the book and revert to what I called “an order fix” where he reverted to key words or phrases that had always helped to calm him down or bring “order” back to his world. These phrases included things like “green truck”, “circle, square, triangle”, etc. On this particular day, Zachary had started, again, by reverting to something that had to do with “trucks”. He started to call out trucks and colors, saying for example, “green truck” and then, making circles with his index finger in the air in order to make a motion for the wheels of the truck. He then went on to “red truck” and did the same thing as he said: “it’s a red truck”. By this time, I knew he was off on a tangent again and so, I stated, “no, Zachary, we don’t have trucks in the house… trucks are only outside… you can look at trucks later… for now, we need to read”. When I said that, Zachary did an interesting “hand flapping” motion – only this time, his “hand flapping” had truly captured my attention, because in “hand flapping” it had literally been as though he was “erasing the trucks” in order to “be done with them”.
That had been very, very interesting to me and I could not help but wonder, how much “hand flapping” in children with autism could be an attempt to physically motion “erasing something” that was troubling them or if “hand flapping” could act as a way to physically transition from one activity to the next. In Zachary, on this particular day, there was no denying that the “hand flapping” from left to right had been a motion that appeared to be one done for “erasing the trucks” in order to get back to reading.
Again, Zachary did not do much “hand flapping” to start with. As a result of that, in the past, I had not paid that much attention to this activity. It was only as I started to really want to understand everything about my son and the way his brain functioned that I had come to pay much more attention to even the smallest of things and as such, now, when hand flapping did occur, I paid much more attention to the actual situation as I looked to understand yet another piece to this puzzle of autism. For Zachary, I very much felt that bananas played some role in hand flapping, and likewise, now, I truly felt “hand flapping” was a coping mechanism of some sort – perhaps a coping mechanism to help with transition issues – or one to help alleviate stress – but I knew it was “something” – and “something” more than just - “mindless motion”. I just had that feeling within me, that just as “parroting” had been seen as “nonsense language” – when in my opinion, clearly it was a critical step in “breaking the code to language” – so too did I think that “hand flapping” had a lot more to it than we may have ever imagined. The fact that so many children with autism engaged in this particular behavior only solidified that belief within me. There definitely had to be “something” to hand flapping!
There seemed to be many possibilities when it came to “hand flapping”. Could it be a reaction to a specific food? Perhaps. Could it be a way to deal with stress? Absolutely! Hand flapping as a “coping mechanism for stress” also seemed likely given that B6 was used to produce epinephrine in the body. Epinephrine – also known as adrenalin – was a muscle stimulant. It was estimated that 80 to 90% of B6 was stored in muscle tissue. It was also a well-documented fact that too much B6 could lead to peripheral nerve damage. Peripheral nerves extended to the extremities – the hands! Did “hand flappers” exhibit more limb apraxia? Children with autism were thought to be low in B6. Was that because they used it up more or simply could not store it in the muscles? Were they using more B6 in order to deal with stress because children with autism experienced so much stress in their lives? Were people not “fidgety” when stressed? Did “fidgeting” not involve – the extremities? I could not help but wonder if “hand flapping” was not a coping mechanism involving the body’s way of dealing with stress and hence, the release of B6 and the production of epinephrine – a stimulant – in the extremities.
Given I now very much suspected that functions co-located in the brain were much more inter-related than we may have ever imagined, I also believed that this issue with epinephrine in children with autism could have something to do with the fact that we saw hyperactivity not only in the physical motions of these children, but in their emotions as well. Could it be that elevated epinephrine levels, clearly documented in autism, resulted not only in extremes in motion but in extremes in emotions as well? I was now, very much starting to think that indeed, this could very well be the case.
Note also the comment in the above definition of epinephrine as it related to fatty acids. Interestingly, essential fatty acids were also abnormally low in children with autism. As such, again, I could not help but wonder if “hyperactivity” in these children could be an immune system response to help them better deal with stress. Reducing stress levels for Zachary had always been a priority for me, and now, this had even greater importance. Simple things like “words to cope” and attending immediately to his distress and showing him how to “ask for help” via word associations, for Zachary, I now knew would be more key than ever. Words to cope (i.e., word associations) had always been so very important to reducing Zachary’s stress levels. I now understood why. As such, these simple phrases would always continue to be constantly used in our home. Whenever Zachary became upset, I simply said: “just try again… or it’s ok… or when you have trouble… just ask for help” and I made him verbally repeat these phrases by saying: “Zachary, say… it’s ok”. I had always found that if Zachary actually verbalized these key “words to cope”, he dealt more easily with the stress. This now made sense to me given control of emotions, word associations and language production were all co-located in the frontal lobe! Also, note that motor activity was located in the frontal lobe. Damage to the frontal lobe resulted in obsessive-compulsive behavior. What was behavior – if not “activity”? Could an alternative explanation to “hyperactivity” in children with autism like Zachary, not be more accurately described as an obsessive-compulsive motor activity? In Zachary’s case, this certainly did appear to be true. This became very obvious to me for the following reason. Zachary’s excitatory motor state was not simply that – an “excited” state of motor activity – it was much more than that.
I had come to realize that Zachary often actually followed a repetitive path or “routine” in his motor activities when he became “hyper”. That, to me, indicated that this had a lot more to do with “just an active child” – that this was a form of obsessive-compulsive behavior since – he was following “repetitive paths” or “motor functions” as he went about the room! Clearly, in my opinion, that was much more than “hyperactivity” – it was an indication of frontal lobe damage! I decided to “test” my hypothesis – again – with one of my very unscientific tests. I moved the furniture – and waited to see what Zachary would do. Zachary had been a “couch-walker” and “table-walker”. He always wanted to get on top of the couch, walk its distance and then get down again. He also tried to do the same thing with our kitchen table – in spite of my many efforts to stop that behavior – he always “tried” to get onto the table if I was not looking.
I moved the two couches we had so that they were in different places and moved the kitchen table so that the area where Zachary used to walk – between the table and the wall – was no longer an option. The table had been moved right against the wall. Sure enough! Zachary got very upset when he saw I had moved the table and his “path” had been destroyed. He could still adapt and “walk the couch” but I noticed he then also followed the wall – as he had always done – on his way to the kitchen table area. There was simply no doubt in my mind. Zachary’s “hyperactivity” was really a form of obsessive-compulsive behavior – something else I would have to work at stopping.
I was now very conscious of this behavior and whenever I saw Zachary starting to follow “the path”, I went up to him and diverted his attention to something else. At first, he struggled a little, wanting to complete his path first, but, I found that if I engaged him in something that was fun to do – like a wrestling match – he could easily forget “the path” for at least a little while. In my opinion, there was no doubt that such activity had to be stopped. The simple fact was that motor functions and obsessive-compulsive behavior were both associated with the frontal lobe – as was memory as it related to motor activities, habits, motor planning and execution – and thus to allow Zachary to engage in such behavior would only reinforce it and make him want to do it more. Having worked this issue with Zachary, this behavior had now pretty well completely disappeared.
Given that the cerebellum (coordination of motor functions) and basal ganglia (learned skills, motivation, reward, conscious and subconscious activity sequencing, etc) and the frontal lobe (motor activity, motor planning and execution) and damage to the frontal lobe (obsessive compulsive behavior) all very much appeared to play into Zachary’s “hyperactivity”, I wondered if matters of “hyperactivity” could not be addressed more by simply “breaking the pattern” – as I had done – breaking the “learned” motor functioning and I certainly wondered how this all fit into all “negative repetitive behaviors” such as alcoholism, gambling, etc.
Indeed, as I thought about this particular issue of “hyperactivity” a little more, I remembered reading the posts of many parents who had stated they felt their child had actually gotten a lot worse when placed on medication for “hyperactivity”. Why was that? Surely medication could reduce motor activity by acting as a “tranquilizer”, but what about frustration levels? Was physical activity such as this, the autistic child’s way of dealing with stress – “walking it off” so to speak – much as any normal person could engage in physical activity to overcome stress? In my opinion, it certainly did appear to be the case that physical activity helped reduce stress levels in Zachary. Indeed, we went for many walks and Zachary always enjoyed them so much. Not surprisingly, motor activity was co-located in the frontal lobe along with – control of emotions! Thus, if motor activity was reduced due to a “tranquilizer” effect, was it not possible that frustration levels in children with autism could increase? In my opinion, that certainly would appear to make sense given my belief that functions co-located in the brain were much more inter-related than we may have ever imagined!
Of course, there were parents who felt that medications had been a “life saver” for their child. I had no doubt that perhaps medication could help some children. My only concern in the use of medication was that – from what I had been able to find – many of these drugs – like vaccinations – had only very limited studies associated with them – and personally, short term studies of say thirty days or so- simply did not give me any comfort level that we knew everything we needed to in terms of the safety of these medications – especially in young children!
As such, parents needed to do their homework and investigate medications before consenting to allow their child to be placed on them. Parents needed to have an understanding not only of the medications and their side effects but, of the duration of studies that had been conducted in determining the usefulness and – the safety – of these drugs! This was true of any drug! I had learned the hard way that vaccine safety standards had been based on very, very short studies – lasting in many cases only thirty days or so – and I very much suspected that drug studies lasted but very short periods too. To make assumptions that long-term studies existed, based on everything I had read – would be a very bad assumption to make. My intent here was simply to raise concerns all parents needed to be aware of. In my opinion, too often, we simply “assumed” the long-term studies had been done – and that, unfortunately, as in the case of long term vaccine studies – clearly was not the case in many situations when it came to prescription drugs. The simple fact was that if studies evaluating the safety of drugs had been conducted for only thirty or even say one hundred or two hundred days (i.e., just over six months), was that enough to say that these drugs were safe – long term? In my opinion, clearly, short-term studies could show safety in terms of short-term use, but long-term studies were needed to evaluate the safety of medications in terms of long-term use – and those studies – in too many cases, simply did not appear to exist!
Some research appeared to indicate that things like zinc deficiency (something known to exist in autism) could lead to “hyperactivity”. Zachary was already on a zinc supplement to help with enzyme functions in his body. A magnesium supplement also helped to keep Zachary “regular” in terms of bowel movements. I had always felt he was more “uptight” if his bowel movements were not regular. Personally, prescription drugs would always be my last option. I had been fortunate enough so far that Zachary had never required prescription medication, but, if ever he did, I knew that I would not simply “take the prescription” – and that before I placed Zachary on any medication – I would do my homework – asking to see the entire documentation on that medication in the Physician’s Desk Reference and then investigating that medication on the Internet to see what other families using it had to say.
I also knew that Zachary’s “hyperactivity” could be not only a manifestation of obsessive-compulsive motor activity (frontal lobe) but, indeed, that it appeared to have something to do also with two other functions co-located in the frontal lobe – imagination and the sense of self. Time and time again I had seen Zachary attempt to “mimic or assume” the role of something he had seen on television. If something appeared amusing or interesting, he would simply get up and go around the room attempting to replicate what he was seeing on television as he made the “appropriate” sounds also. Thus, it was almost as though Zachary’s imaginary play or pretending involved compulsive motion also as he felt compelled to “assume” the role of what he had seen on television. This did not happen each and every time we watched television but it certainly did happen often enough to be a concern for me.
Interestingly, I had recently noticed that when “watching” television, Zachary often did not have to be “watching” – especially if it was something he had seen previously. More important seemed to be the “motion” he engaged in as he tried to reproduce what was on the television. Interestingly, motion was co-located with activity in response to one’s environment in the frontal lobe. As such, it appeared “vision” was less important – again, than other things in how Zachary reacted or perceived his world. Based on all this, I truly believed that control of emotions and motor activity were absolutely dependent on “smells” – the only sense found in the frontal lobe – the thing that in my opinion, could perhaps actually “trigger” a motor response in those who lived “via reference”. It was also very interesting that “olfactory or “smell” dysfunction” had clearly been noted in autism, schizophrenia and Alzheimer’s. In order to control emotions and motions, in my opinions, parents had to use the sense of smell and/or taste – at least until the brain learned to “rewire itself” as I knew it had been doing for Zachary as he spent his many, many hours on the computer.
For some time now, “pretend play” and “imagination” had been major areas of concern for me when it came to Zachary’s sense of self and sense of reality. In my opinion, what I had seen in Zachary was more than “pretending”. It was as if he wanted to totally assume the role – of a truck, a tornado, or anything else he could be captivated with and he very much assumed that role in both his vocalizations (production of language) and his motions, and in my opinion, could easily lose his true sense of reality and of self if not carefully monitored in regard to this issue of “pretend play”. Note that production of speech (vocalizations during pretend play), motor functions, and the sense of “self” were all co-located in the frontal lobe. It was difficult for me to describe exactly what I meant here, but, I knew that other parents experiencing this would know exactly what I was talking about. It was really a matter of “degrees” in terms of the extent to which I saw Zachary “assuming” the role of someone or something else. It was more than “just pretending”.
Thus, “hyperactivity” and “pretend play” in children with autism had both been very, very misunderstood and as such, I closely monitored Zachary in regard to these. Obsessive motor activity, was diverted to more productive activities and, pretend play was always labeled as such. I always did a “reality check” and made sure Zachary knew that he was “only pretending” and made sure he knew “who he was” by saying: “And, who are you?” while he engaged in these activities. Obviously, his first answer to that was usually to tell me “what he was pretending to be”, but I always made sure I then stated something like: “No, you’re only pretending to be a truck… but, who are you?” as I emphasized the “are” as I asked the question. I always made sure Zachary could answer that by telling me exactly who he really “was”. Given I knew Zachary lived via reference, I asked this “reality check” in a few different ways in order that he could not simply provide a “past reference” to that question and hence, in doing so, perhaps not have a true sense of exactly “who he was”. I always made sure that this understanding was there.
Pretend play or imagination… something parents of children with autism were told their children could not do had been taken to a whole new level in these children and could very possibly contribute to the loss of their sense of self and reality. So much of what I had once “known” to be true now seemed shown to be so completely wrong. There was no doubt that as his parent, I could best see what was or was not an issue in Zachary. No longer would I simply blindly accept what the experts said when it came to my son. I trusted my instincts as a mother and parent more strongly than I ever had in the past and if something did not look “quite right”, I acted much more quickly in taking that “second look” and questioning what I was seeing. I had trusted blindly in the past – and learned my lesson the hard way – never again would I trust blindly - when it came to the health and well-being of my son or any other member of my family!
There was no doubt that having to rely a lot more on my husband, my daughter and myself when it came to understanding Zachary had added a lot more stress to our lives. It would indeed have been a lot easier and a lot less work for me to simply have accepted everything the medical and professional community had to say in matters relating to autism. Yet, I knew, without a doubt that I simply could no longer do that. This was my child and I had to do my homework when it came to understanding him and taking care of him. The answers coming from the professional community were too few, too slow and often, too inaccurate. I knew this statement would perhaps upset many, yet, mine was not a professional career to protect – mine was a child to protect – and that was a much greater responsibility because “being wrong” – in a worst case scenario - would not cost me simply a piece of paper I had earned in school – it could literally cost me - my son – and that was a price I was not willing to pay!
I had literally spent hundreds and hundreds and hundreds of hours doing research in an attempt to understand my son. Certainly, I did not understand all the “science” behind Zachary’s problems, but there was no doubt that I best understood – Zachary. I knew what upset him, I understood how he thought, I knew why he did most of the things he did and, I knew what needed to be done to calm him down when he became frustrated and most of all, I knew what I needed to do to teach him and help him grow as we worked toward removing the shackles of autism.