Coping Mechanisms... How The Autistic Child Deals With His World!
And How Parents Can Use Some Of These Coping Mechanisms... To Their Advantage! :o)
UPDATE: Looking back, many of these, in my opinion, would also play into matters of epilepsy - specifically, odd behaviors, blank stares, looking through you - these can also be signs of epilepsy! END OF UPDATE
Spinning, Visual Stims, Self-Spinning, Hand Flapping, Licking, Screaming, Rocking, Toe Walking, Odd Behaviors, Biting, Self-Injurious Behaviors, Breaking Eye Contact With People And/Or Objects, Looking Through You And Blank Stares, Making Eye Contact With Certain Objects, Physically Removing Oneself From An Upsetting Situation, Ritualistic Familiarization Processes, Aligning and Stacking, Creating New Entities, Creating One's Own "Code To Life" And The Danger Of Reference Living, Creating Randomness, Ordering Language©, Echolalia and Reference Communication©, Counting And The Use of Math Equations, Words To Cope, Music, The CRITICAL Role Of Labeling!
Throughout these materials, I have identified what I saw as "coping mechanisms" in my son Zachary as I came to truly understand what was at the root of most of his problems: the inability to properly process or integrate the parts to the whole. Zachary and I suspect many other autistic children, had a rather extensive repertoire of coping mechanisms they made use of to deal with the frustrations of everyday life. These included:
· Spinning and other visual stims
· Self-spinning
· Hand flapping
· Licking
· Screaming
· Rocking
· Toe walking
· Odd behaviors
· Biting
· Self-injurious behaviors (head banging, injury to skin, hitting/covering one’s ears, hurting one’s eyes)
· Breaking eye contact with people and/or objects (looking through you, making eye contact)
· Physically removing oneself from an upsetting situation and/or
· Creating “synthetic order”, “hyperactivity verses the Child In Motion”
· Ritualistic familiarization processes (alignment and stacking of objects)
· Creating new entities
· Creating one’s “own code to life” (The Danger Of Inaccurate Or Incomplete Reference Livingã)
· Creating randomness
· Ordering language, echolalia, and reference communication
· Counting and the use of math equations
· Words to copeã
· Music
· Labeling
... and perhaps countless other coping mechanisms yet to be identified!
Although many of these coping mechanisms had in the past been viewed as "negative" or "non-productive", in actuality, when understood in terms of how the autistic child made use of them, there were indeed some of these coping mechanisms that can be used in a positive way as parents attempt to help their children "break the code" and understand the world about them. Thus, the goal for all parents was to use the “good” and eventually “eliminate” the bad by providing coping skills in the form of labels, explanations, therapy techniques for stress management, etc.
Note: Since I discussed most of these issues within my previous text, there would be some repetition here. However, I felt it necessary to provide a “summary” of these all too critical coping mechanisms as I saw them in the autistic child to help parents and professionals “see the whole picture” as I now so clearly saw it! This also provided a section I could continue to add to on my website as I came to understand additional coping mechanisms in the autistic child. Parents and professionals could always find the most up to date information on this topic on my website: http://www.autismhelpforyou.com.
This also provided a very quick “reference” for parents who were new to the world of autism and had to quickly “get up to speed” on so, so many issues to help their children. So, there truly was a method to my madness in repeating certain things. Given that so much of this was so new to everyone, such a “summary” provided a good review of so many issues previously discussed and there was no denying that given all the information here provided, there would undoubtedly be the need to review certain materials more than once – and coping mechanisms certainly fell into that category in terms of helping to determine how to best help these children from a behavior therapy and, also research standpoint! :o)
Spinning And Other "Visual Stims"...
The Autistic Child's Way Of Doing Away With The Partial
And Attempting To Understand Motion!!!
Spinning was, perhaps, by far the most common coping mechanism we saw in the autistic child. This was because spinning did what nothing else can do... it made the partial whole again. This explained the autistic child's fascination with this activity and with ceiling fans. When an object spun, its parts "disappeared" and were integrated into the "whole". You could no longer distinguish the parts from the whole. Something as small as a "spec" or a "scratch" on an object was enough to provide a "partial" that had to be made to become part of the whole through spinning. This was why this activity was so entrancing for the child. It provided not only a way to cope with the partial but, certainly that "vertigo" effect also that put him further into his own world. This was why interruption of spinning could be so stressful to a child... especially if it had been a difficult day and there was that need for the child to "de-stress" - and one of his most important coping mechanisms for doing that... was spinning!
In my opinion, spinning also provided a coping mechanism in that it was perhaps the child’s way at attempting to decode the mystery of how “motion” fit into the world and given that there existed so much motion in life, striving to obtain the “key to motion”, surely, had to be a strong motivation to also constantly engage in this activity.
I have gone back and forth on the issue of spinning... whether or not to allow it. Currently, I allowed some, but tried not to allow extended sessions. I found that if some was allowed, some coping was provided, some stress was relieved... but, too much could simply allow the child to slip further into the clutches of autism. For more on this subject see: Spinning - Making The Partial Whole!
As annoying as spinning could sometimes be, it was also a tool a parent could use to his advantage in order to help "de-stress" a child when life was just too much to cope with. When Zachary found life just too stressful and was going through a major "meltdown", all I often had to do to calm him down quickly was turn on my ceiling fan in the bedroom and let him lay on my bed looking at it for a few minutes or let him spin an object of his choice. If traveling, I simply positioned myself so that he could “view wheels” spinning on another car. Obviously, this was only a practice I engaged in where there were two lanes going one way. I would never encourage parents to do so on two-way roads… since a slight distraction on the part of the parent in terms of actually focusing on driving could lead to devastating head-on accidents – just a second or two in terms of distractions was often all it took to result in an accident… and as such, I encouraged parents to be first and foremost responsible drivers! The additional burdens that could be placed on a family as a result of a car accident were simply not worth the risk. An injured or killed parent, sibling or autistic child were the last thing families already so devastated emotionally, financially and physically needed – and these were all very, very real possibilities if anyone attempted doing this in two-way traffic
If driving became too unbearable as a result of an autistic child’s distress, my best advice was to pull over as soon as possible and help that child deal with the issues at hand (a lowered car window used to be enough to send Zachary screaming… as was a simple change in direction and thus, working on these issues as quickly as possible, during short trips, even around the block, were indeed, in my view, a priority in terms of helping with travel issues). For more on that, see issues with direction changes under “Odd Behaviors” and “Safety” sections!
This “driving next to another vehicle” should ONLY be done in two-way traffic… when both lanes were going in the same direction and only as a last resort to calming a very out of control child! The simple fact was that in some cases, parents just had to learn to “tune their children out”… and this was definitely one of those cases! Having a favorite “spinning toy” in the car was also another great idea… as was having earplugs for temporary use by everyone else! While in a car, the safety and concern had to be for all individuals, in your car as well as in other cars – the autistic child could NEVER be allowed to change that priority!
By creating a "new whole" via spinning, Zachary, and I suspected other autistic children, were literally able to give, themselves, control of a stressful situation and literally could "do away" with the "partial". By removing the partial through spinning, Zachary could now focus on his "new whole" as opposed to having to deal with partiality (i.e., the blades of a fan). Hence spinning was simply a coping mechanism that could be used both positively and negatively by the autistic child.
It was used negatively in the sense that it did not help the child move forward in terms of actual learning but it was used positively in that it helped the child cope with life's frustrations and as such, spinning did play a critical role in the life of the autistic child. Thus, the key to reducing spinning was to help reduce the child's stress levels by helping him "decode" stressful situations having to do with partiality. When times of stress were particularly intense, parents could use spinning to their advantage by using it as a tool to help the child cope and calm down until the child was ready to once again tackle the issues of partiality found in his environment and daily life. :o)
The moving of a pencil back and forth quickly in front of one's eyes, hand flapping, and other such "visual stims", in my opinion, were used much in the way spinning was used by the autistic child in that these activities created the illusion that a "part" could be made into a "whole". There was an element of “visual stimulation” also, such as the vertigo effect created by spinning, that also fascinated the autistic child, but, in my view, spinning was more a coping mechanism than a visual stimulation since spinning was all to often the autistic child’s way of dealing with daily stress. For Zachary, when spinning was not an “available coping mechanism”, he resorted to behaviors such as “hand flapping” – although “hand-flapping” was now quite rare in Zachary. Yet, other coping mechanisms were still very much there!
UPDATES ON "SPINNING" (scroll down below the pictures)
Self-Spinning
Another area I came to understand a little more had to do with "self spinning"... something I still saw in Zachary to this day. Zachary often looked up to the ceiling or down at the floor as he "spun himself". Was this his way of attempting to figure out how he himself fit into the "whole"... the environment? After all, persons were, like cars, moving "parts" to the world and perhaps Zachary simply could not understand how he, personally, fit into that whole... the environment, much in the way, I believed he did not understand how cars, these "other moving objects", did not fit into the whole! Self-spinning was simply Zachary’s way of attempting to “decode” how he, himself, fit into his world, and perhaps another way Zachary attempted to understand motion as well! The fun vertigo sensation involved in self-spinning, something I had personally also loved as a child, no doubt was an “added benefit” in this particular activity.
Hand Flapping
Hand flapping was another one of those behaviors I saw as potentially having more than one "reason". The one thing I did see, however, was how, for Zachary, this was very much simply another coping mechanism. If Zachary wanted something and it was denied him, I had seen the hand flapping set in - almost immediately after being told: "no". This had been recently been true when I took away a favorite car he liked to spin and I said: "no more spinning". I had recently placed a favorite car on top of the refrigerator and Zachary started to scream and flap his hands - almost immediately. Since hand flapping was something Zachary rarely did, I noticed this behavior right away. I believe hand-flapping, because the child’s hands were “always there”, ranked in the "preferred" coping mechanisms for these children... that if spinning was not allowed, this was another coping mechanism the autistic child could easily revert to since it simply involved part of the child's body... and that, even mommy could not take away! :o)
But, if you think about it, as with spinning, the flapping of hands created an "illusion" of "parts being made whole". When you quickly flapped your hands, it was harder to distinguish the fingers... the "parts" from the "whole". This particular coping mechanism does not work as well as spinning for Zachary and as such, I believe this was why he preferred to simply "spin"... he never seemed to be able to "flap" quickly enough to really calm himself down. Zachary used to do a lot more hand flapping. However, over time, it became less and less obvious... and less and less intense.
I had also noticed hand-flapping start when Zachary touched something he did not like... it was as if he was trying to "shake it off" physically... physically trying to remove "a part" (something on his finger) from the whole (his finger). For these reasons, I had come to the conclusion that hand flapping was nothing more than another coping mechanism for the autistic child. It was important to note again, that since I had put Zachary on enzymes, the whole hand-flapping issue had greatly subsided too...although he seemed to be doing more spinning than he used to... so, again, I thought multiple issues were involved here! Of course, the increase in spinning could be very much attributable to the fact that I had recently spent less time with him than I needed to because I had been writing and sharing all this information with other parents. I now did a lot of writing at night when he was asleep, or very, very early in the morning before he was awake. Providing "words to cope" was a good way to help minimize hand flapping. I always made extensive use of "words to cope" and I suspected that indeed, they did help Zachary cope and as such, helped with the elimination of this particular behavior. :o)
UPDATE Dec. 2005: I now believe this - and hyperactivity - may be an actual immune system response to release B6 - stored primarily in the muscles. B6 is known to be very low in these children and it is critical to many, many issues. See the paper I wrote on Redefining The Role Of Insulin: Could It Play A Major Role In Metal Detoxification for a whole lot more on this issue! END OF UPDATE
Licking
Although I only experienced this somewhat in Zachary, this was such a limited behavior for him that I had forgotten about it until recently. Licking was now basically non-existent in Zachary (except for something we called “lick kisses” on the cheek), but, I suspected the act of licking in the autistic child had something to do with an attempt by the child to "remove" something from the object being licked... that the autistic child could be attempting to remove a "part" that just did not seem to belong to the whole, such as a fingerprint on a window, etc. Again, as with spinning, any spec, any marking on a surface, etc. could be seen as “a part” that did not belong and that had to be removed. Since this was no longer an area I could work on as this behavior was no longer present in Zachary, I encouraged all parents who have children who "licked constantly" to truly observe what the child was licking as it related to the "parts to a whole". Once the issue was identified, the "parts to the whole" could be explained in order to help minimize this behavior in the future.
Given the fact that “licking” could make a child more prone to parasitic infections, this was a behavior, I felt, parents should try to minimize as quickly as possible via the use of labels, explanations, and, if necessary, substitutes (i.e., food) until the child could better understand why there was no need to “lick” anything. The other cautionary advice I would give parents on this issue had to do with metal objects in the winter. As a child, as embarrassing as this was to admit, in fourth grade, I had tried to lick an icicle off a metal window ledge – at school when I lived in Canada. Well, needless to say, my tongue got stuck on the metal. Other than the fact that this was very embarrassing… it was also very, very painful since that ledge had been slightly higher up… and I had literally been on the tips of my toes as I did this. It was a memory that had been so painful, and yet, as an adult, so funny, that it never left me. Given the inherent need for the autistic child to “lick things”, I wanted to caution parents about such “licking behavior” in the winter as it related to things like icicles and frost on metal objects! Since I now had a 6 foot chain linked fenced in my backyard, this was something I was particularly sensitive to in the winter when it came to Zachary’s safety… yet, another reason to never leave him alone… even within his “compound”. With any licking, there was also the possible issue of a gluten “high”, too.
Screaming
Every child screams... but screaming in the autistic child could become overwhelming. When he was about 2 1/2, Zachary used to scream up to 100 or more very high pitched screams a day. This was totally draining on all members of our family, including Zachary himself. I had now come to understand these screams simply as yet another coping mechanism... much as it was in "normal children" who were frustrated. The difference, however, was that the world of an autistic child was one of constant frustration as a result of his inability to cope with the "partial" and to integrate sensory information and as such, the screams were much more numerous than in a "normal child".
This coping mechanism was magnified by the fact that for many autistic children, communication was not something that came easily! As such, for many non-verbal autistic children, screaming was one of the few means of communication they did have... and as such, it was used as a coping mechanism to help them deal with frustrating situations - to let others around them know something was wrong and it was an effective coping mechanism because a scream always seemed to illicit some kind of response in others! Screaming, in my view, obviously, for the most part, was a negative coping mechanism.
As for all children, however, it did, serve an important function in that it was a means of communicating that should be used when there was a dangerous situation. As such all children, including autistic children had to be taught that screaming was appropriate in order to "get help" in dangerous situations, but that otherwise, it should really not be used… at least not indoors. Obviously, screaming outside when one played was fine and perfectly normal. :o) But, I knew I spoke for all of my family when I said that we, personally, had heard enough screaming to last us a lifetime!
Rocking
As far as "rocking" was concerned, this was a behavior I never saw in Zachary although I knew it was one found in many autistic children. Having never been able to actually "observe" a rocking situation... to see what happened just before the behavior started, during he behavior and after it, etc., I could only guess that perhaps this was simply another coping mechanism for the child... another way to deal with the stress of his daily life... to ignore that which caused him frustration and slip further into his own world. This was simply a guess on my part, but, I suspected, perhaps a good one. Even normal children found comfort and security in "rocking" as well evidenced by the fact that parents often rocked their children to sleep within a matter of just a few minutes once the “rocking” motion began. :o) There could also be something there at play in terms of “motion” itself, but I really could not address that since this was not something I had observed in Zachary.
Toe Walking... Was This, Too, Simply Another Coping Mechanism?
Toe walking had been observed at some time in the great majority of autistic children. Parents and professionals alike had long sought to explain this behavior.
In terms of toe walking, parent discussion boards were really what led me to believe that this too, was simply just another coping mechanism in the autistic child. Many parents somehow felt toe walking and constipation were related... and felt that constipation resulted in toe walking. Zachary had been on a casein/gluten free magnesium supplement for over two years. I knew magnesium helped with issues of regularity... and quite frankly, Zachary never seemed to have that many issues with constipation. I noticed constipation after long car trips... and that was when I usually noticed the toe walking too! I just did not think that constipation, in and of itself, "caused" toe walking... Zachary, overall just did not seem "that constipated" and toe walking was noticeably present in him even though I felt he was, overall, rather “regular” in his bowel movements.
I then had another thought since I had noticed "some" toe walking. Perhaps the issue was not constipation... perhaps it was something else. I kept coming back to that. I had read on a parent discussion board that the colon could stretch to four times its normal size...if this were true, that was absolutely amazing indeed... and dangerous because as more and more bacteria and feces accumulated in the colon, the more likely an infection. The fact that so many parents believed toe walking and constipation were somehow related led me to actually come to the same conclusion... as I too, suspect that they were related - but perhaps not in the manner most parents believed they were related!
Parents seemed to think that constipation caused toe walking... but, I was beginning to be of the opinion that the very opposite may actually be true - that toe walking causes constipation and that this was simply another coping mechanism in the autistic child.
It certainly would make sense if examined in terms of issues with partiality and the fact that so many autistic children took so long to be potty trained. I came to wonder if "toe walking" was simply tied to issues with "potty training" and the child's inability to cope with the "parts" that made up "the whole" and the failure to integrate the “sensation part” (feeling the need to go) with the appropriate motor response (walking to the bathroom and performing the necessary “things”)... in this case, those things that physically needed to occur for a child to go to the bathroom... the physical removal walking to the bathroom and the physical removal of "a part" of the child... his urine and stools... from the whole - his body.
If sensory information (from sight, sound, hearing, taste and smell) was not properly integrated, surely, that could be true when it came to such “physical” sensations as well as they related to “potty training” and the “urge to go”.
Walking on toes created a "firming sensation" in the buttock area and may simply be a coping mechanism used by the child to delay the inevitable separation of the "parts" from "the whole" as described above. Could we all “picture” researchers trying this, and trying to see how long, “they too” could “hold it”? :o).
This was simply based on my observations in my own son! With Zachary, I had indeed noticed that toe walking started just prior to his having a bowel movement.
Relatives were visiting when I once pointed out that Zachary had just started "toe walking a few moments ago on a particular day". I mentioned my theory on the possible relationship between toe walking and going to the bathroom. Sure enough, within minutes of starting to "toe walk", Zachary was crouching down to poop in his diaper. Once done, the "toe walking" mysteriously disappeared! Very interesting indeed! :o)
"Odd Behaviors"
In addition to the obvious "odd behavior of spinning", parents of autistic children could identity countless "other odd behaviors" in their autistic children. With Zachary, I was able to identify easily over 60 "odd behaviors" that could be explained by his inability to properly perceive the whole without first understanding the parts that made up that whole. I encouraged all parents to review my section on "Odd Behaviors" to see how these were used as "coping mechanisms" by the autistic child who was simply attempting to do away with "parts" to the "whole" he simply could not explain or understand. In some cases, some of these "odd behaviors" had serious issues in terms of Zachary's actual physical safety and as such, understanding these behaviors, in many cases, could actually be a life and death issue for the autistic child! "Odd Behaviors" could take on many, many forms in autistic children but, "variations of them", however, existed in pretty well all, autistic children. They were just a little "harder" to identify for what they were because there were "so many of them" that they, in the past, simply did not seem to have a "common thread" - until now. In my opinion, these "odd behaviors" were simply attempts at dealing with issues of "partiality processing" and integration of the parts into the whole – more coping mechanisms!
Biting
Biting was something I had not paid particular attention to since Zachary had not really done it in a while. But, recently, as I played with him one day, I noticed something rather interesting happened when I took away the toy he had been spinning. I had been wearing shorts that day... something I rarely did. When I interrupted Zachary so that he could no longer spin, he proceeded to biting me, such that a mark appeared on my skin. It was not a “full force” bite, but it did leave an impression. When biting had been more of an issue for Zachary, I would have paid no attention to this in the past, thinking he was just “biting again”. But, lately, Zachary only rarely bit, and I had now trained myself to observe his every move, the motion of his eyes to see the object of his fascination, and to pay particular attention to his every utterance, etc.
Well, since this had been the first bite mark in a long time, something really jumped out at me on this particular occasion. I noticed that after Zachary made the bite mark, he looked at it for a few seconds, fascinated by it. When I asked him what "that was" on mommy, he responded: "train tracks". How interesting! Could this, too, be explained by my theory on partiality? A circular bite pattern on the skin, after all, formed a "whole" and his referring to it as a train track really made me wonder. Later, Zachary would call bite marks "teeth tracks".
I then thought a little more on the whole issue of biting and why, exactly, any children bite. Normal children bit... and when they did so, it was usually because they were upset with someone or frustrated. The same was completely true for the autistic child. The life of the autistic child was defined by frustration and thus it made perfect sense that biting was so prevalent in many of these children. I now came to the conclusion that biting, in the autistic child, was but another coping mechanism, one used especially in dealing with frustrations that could not be eliminated via spinning or other "coping strategies" and biting was a coping mechanism engaged in “on the spot” when no other coping mechanisms seemed readily available. In the past, this coping mechanism of biting was clearly evident in Zachary. But, again, I had simply missed seeing it for what it was.
For example, when frustrated by my partially open living room or bedroom windows - things he could not "spin" - Zachary simply resorted to biting to deal with the frustration of the situation. This was also evident from the biting around the windows in Zachary's Room Of Colors.
This picture captured only about 1% of Zachary's actual bite marks as they could be found in his Room of Colors and in my bedroom around each window and around certain doorframes.
The picture below, although taken recently, showed Zachary's bite marks from approximately a year ago (Spring of 2001). I now understood that Zachary had bitten the wooden window frame in an attempt to cope with the fact that the window was half open and "half" represented a "partiality", an "in between", a "part to the whole" he simply did not understand and simply could not cope with.
Having worked with fractions in helping Zachary had greatly helped him cope with these issues of "parts to the whole"... because now, I could label the window as "half open" and that "half open" became an entity in and of itself, and was no longer viewed as a "part" by Zachary. An open window, not only could be result in Zachary “seeing” a “partiality” but, it provided for “auditory” partialities too in the sense that open windows allowed sounds to come in from the outside… sounds that were not inherently present in the home! Biting open window frames, I was happy to say was thus no longer an issue. :o)
I did suspect that biting may also have some actual physical implications in addition to it being a coping mechanism. In the past, I had always found that foods high in phenols seemed to increase overall biting. I did not know if that had simply been a coincidence... that I had noticed the biting on days he took phenolic foods. Since Zachary had been on enzymes (see section on First Steps For Parents!), however, biting had all but disappeared. It came back once in a while, but infrequently and less intensely – and I believed that now, when it did surface, it was simply as a coping mechanism.
Obviously, I could not say for sure whether the overall disappearance of biting was due to the fact that digestive enzymes somehow helped by better breaking down the phenolic foods, or whether this disappearance was due to the fact that Zachary could now cope much better with his world given that I now understood him so well and could much more easily help him deal with his frustrations via the use of labels and explanations as to how things fit together.
Zachary now understood it was not acceptable to bite.
As rare as biting was in Zachary, this was one behavior I now tried to extinguish quickly when it did surface, because I knew that Zachary now did have that understanding that biting was wrong. I understand biting provided a coping mechanism for Zachary and hence, the trick in extinguishing biting as a coping mechanism was in helping Zachary deal with frustration in another way.
As such, when biting occurred, I encouraged parents not to punish their autistic child but rather to look for the source of frustration and to provide for the child an understanding of how the source of the frustration "worked" - to provide an understanding of "the parts to the whole" to better help the child cope with issues of partiality... and again, this may be as simple as "labeling" a window as "half open". :o)
Zachary rarely bit himself. Self-injurious behaviors in Zachary were quite limited, but I had come to see that these behaviors - so present in so many autistic children - were also primarily coping mechanisms used by autistic children as they attempted to deal with the frustration that was so much a part of their daily life!
Self-Injurious Behaviors
If there was one topic in autism that truly caused stress for parents it was surely that of self- injurious behavior... when the autistic child physically harmed himself. This behavior could take on many forms: biting, head banging, injury to the skin (i.e., obsessive "picking" or "scratching" of the skin), hitting of one's ears, attempts to injure one's eyes, etc.
Undoubtedly, there were certain physical issues at play here. For example, I did believe that autistic children were overly sensitive to certain to almost all sensory input, and, as such, I believed in part, this was likely due to actual physical damage to those parts of their body physically involved in the processing of sensory information and, although I had not, personally, done chelation in Zachary, I knew many parents reported wonderful results from this process whereby heavy metals were extracted from the body (see section on First Steps For Parents! for more on enzymes and chelation). In my own son, I found many of these issues were helped with digestive enzymes. Although I did believe that these issues were related to the natural opiate effect of casein and gluten and issues with phenols as well as to issues of mercury and other toxic substances in vaccinations, the mechanics of "how" such sensitivities occurred or how to resolve them was not the focus of this discussion. These were all serious and valid issues, however, explaining these in particular, was an area I could not even begin to address in this forum. Each of these issues would, surely, constitute another book in and of itself. I had a basic understanding of these issues and certainly saw how they fit into the "big picture", but there were others who had a much better understanding than I did when it came to issues of diet, vaccinations, the immune system and "true" sensory issues (i.e., physical issues with vision, hearing, touch, etc.).
What I, personally, could help readers understand, however, was how these issues with self- injurious behaviors, were in my opinion, multi-faceted in that, again, I believed there was more here than met the eye because many of these behaviors also acted as coping mechanisms the autistic child used in trying to deal with frustration in his life (in addition to possibly having very real physical implications in terms of how vision, hearing, taste, smell and touch actually worked in these children). Unfortunately, for the autistic child and his family, these "coping mechanisms" – self-injurious behaviors - could cause further serious physical injury to the autistic child, further complicating his already complex and frustrating existence. :o(
The "coping mechanism" provided by these behaviors was that they at least gave the child the sense that his parents were trying to help him. The act of parents providing attention when such behaviors occurred was indeed a double-edged sword.
Parents needed to try to prevent the child from truly injuring himself, yet, in doing so, they were also helping to comfort the child in distress...and herein was the reason the child most likely continued and often increased the intensity and frequency of these behaviors. Through their self-injurious behaviors, these children were screaming and begging for help... and any attention from a parent did provide for the child "some security"... "some comfort"... "some sense" that mom and/or dad were trying to help. The inability to understand the underlying issues that resulted in these behaviors in the first place, I suspected were associated with issues of partiality, and led to frustration and extreme stress not only for the child, but for the parent as well - often having emotionally devastating consequences as children were often institutionalized and separated from their parents. A mother of a 13 year old boy with autism had recently taken her child, clung to him and jumped from a bridge because of the fear that her child was about to be taken away from her. The physical separation of parent and child, indeed, was often more than even the parent could bare – still further testimony to the fact that autism was devastating not only for the child, but, I would argue, emotionally devastating for parents as well! Autism, had for a very long time been viewed as an illness whereby you slowly “lost your child” for no reason – truly, the ongoing, living death of a loved, one’s child, for the entire length of that child’s life and, as such, a seemingly never-ending living hell for the parent whose child was so completely devastated by this disorder!
Before we look at specific behaviors, I wanted to make clear to parents that my own son had some injurious behaviors but certainly far, far fewer than may be seen in other children. When Zachary used to throw himself back in any way, as painful as it was, I ignored it from very early on, as explained in my first book, Saving Zachary: The Death And Rebirth Of A Family Coping With Autism. I also believe I may have "stumbled" upon how to help my son in so many ways from the very beginning... only much later coming to truly understand why the things I did worked. As I came to fully understand my son, his frustration levels continued to decrease. Self-injurious behavior was virtually nonexistent in Zachary. I hoped that my providing these insights would also result in this being true for many, many other autistic children!
Head Banging
Of all self-injurious behavior, this was perhaps the most troubling for parents - for obvious reasons. In my opinion, there were several things that could be going on in "head banging".
First, I did believe that the natural opiate (drug) effect caused by casein and gluten and possibly, issues with phenols could make it so that these children were actually hallucinating... and, unfortunately, not all "drug trips" were good. This was one factor that could certainly explain head banging.
Another issue with "head banging" could indeed be related to physical pain being experienced by the autistic child. There were many studies that show that migraine headaches, for example, were indicative of neurological stress. When Zachary had what I believed to be an allergic reaction to cod liver oil (and the possible mercury it contained), he rubbed the top of his head constantly and as such, I believed he had somehow experienced some time of neurological distress when this occurred!
An autistic adult once told me that when she was young, the headaches she felt were very intense as well as very frequent. Such headaches could surely be related to the natural opiate effect of casein and gluten... or they could have something to do with injuries to the brain due to mercury or other toxic metals from vaccinations or from other sources of mercury poisoning, such as dental fillings (those silver ones that pretty well everyone has today), or from virus related issues.
Dr. Andrew Wakefield, the man who ignited the "MMR controversy" in England had indeed shown that certain viruses, he believed could only come from vaccinations, were found in spinal fluid, indicating that the virus could have had access to the brain. There was also talk of the fact that with the MMR, the Measles and Mumps viruses, together, could interact in a very negative manner. Throw in there the fact that the “rubella” vaccine was made with the cells of a human fetus and as such, we were, literally, injecting our children with the dna of another person, and indeed, you had, to say the least, a rather “nasty” situation! Why were these vaccinations not readily available as single doses? I suspected, the answer was completely a financial one! Interestingly, it was only in the last 20 years or so that the “rubella” part had been changed from animal cells to the cells of a human fetus, and coincidently, it was in the last 20 years that autism rates had skyrocketed, and had particularly skyrocketed exactly at the time that children were being given bigger doses of mercury via their vaccinations!
Thus neurological stress, manifesting itself in the form of headaches, may indeed be another plausible explanation for head banging. For more on this, readers can go to: http://www.jabs.org.uk/pages/main.html or do any search on the Internet on key words: "Wakefield virus presence in brain". I also encouraged parents to read the soon to be released book of the US Autism Ambassador, Autism and Vaccinations: The Story A Closer Look. This book could be purchased by going to: http://www.autismawakening.com - the official site of the US Autism Ambassador. For autistic children, head banging for some could be a behavior they engaged in as they attempted to somehow deal with the pain to "make it go away".
In looking back, I suspect Zachary’s pushing of his forehead along the floor was related to neurological stress. This was something he did rather frequently at the time he was first diagnosed! :o(
Finally, I did also believe that head banging was related to issues with partiality. As stated in my theory on autism, I believed autistic children lived in a world of constant frustration, until they learned to very slowly and painfully "break the code" to the world – to see how all the “parts” fit together to form the whole!
As such their world made no sense to them... it was one of constant confusion and stress.
Head banging, in my view, could often simply be a coping mechanism... a way for these children to try to distance themselves from the "offending situation" ... those " parts " that were not understood and thus cannot be tolerated by the autistic child. There were indeed several times that, when Zachary was younger and frustrated, he would simply throw himself back hitting himself on the floor, the wall, the sidewalk or the back of the couch. This behavior was not "head banging" in the sense that it was a repetitious behavior, but it certainly could be seen as "head banging" in the sense that he was actually hitting his head against something as a result of his immediate frustration with life.
In terms of the three above theories as to why we saw "head banging" in autistic children, there were certain things that parents could do to really get to the issues behind this behavior for their specific child. First and foremost, I encouraged parents to speak with their children's doctors about possibly placing the child on a casein and gluten free diet, and possibly one low in phenols as well. Again, for more on that, please refer to my book: Saving Zachary: The Death And Rebirth Of A Family Coping With Autism. There were plenty of other books and websites on the values of this diet alone.
Second, I would caution parents that if your doctor tried to tell you that there was no “proof that these diets worked”, well, my son, and many other children were living proof that they did! As such, if your doctor was unwilling to support you in your decision to try this particular intervention for this child, I encouraged you to seriously consider getting rid of that doctor and finding one who would help you. There certainly were plenty of excellent doctors out there who were more than willing to help in this area (for more on this issue, see First Steps For Parents!).
Although I had heard many parents give up on the casein and gluten free diet, believing they saw no changes or insignificant changes in their child after 3 or 4 months on the diet, I wanted to share with all readers that, in our situation, the very real changes for Zachary came after at least 10 - 12 months on a very strict casein free and gluten free diet that was also low on phenols. It had been shown that gluten could indeed take close to a year to leave the body and as such parents should not to give up on a casein and gluten free diet - as difficult as it could be - until the autistic child had been on it for at least a year. This was strictly just an opinion. I had no medical training whatsoever and as such did not want this to be taken as medical advice, but rather, just as a suggestion of something to look into – something to discuss with a doctor who was familiar with the removal of casein and gluten and the potential benefits to the autistic child! If no progress was seen after a year, then, obviously, other options had to be considered with your child’s doctor. But, given gluten took close to a year to leave the body a year, at least, had to be provided to determine the effectiveness of such a diet on the autistic child.
In addition, there were now digestive enzymes that helped reduce and/or eliminate the opiate effect of casein and gluten. I encouraged all parents to look into these enzymes by looking at the information under my section First Steps For Parents! or, on my website under New Options For The Autistic. These enzymes were non-prescription (over-the-counter) and helped autistic children to more properly break down casein, gluten and phenols.
Finally, I did believe that head banging, in addition to possibly resulting from dietary and vaccination issues may also be another coping mechanism in the autistic child to deal with the frustration created by the inability to properly process "partiality" and thus, the inability to understand the whole without first understanding the parts. In such cases, in my opinion, the key to reducing and/or eliminating this behavior, again, was in helping the autistic child to "break the code". Once the child understood how the parts of each situation/object - the parts of everything - fit together to form a whole, then frustration would, surely, be reduced and thus result in less self-injurious behavior such as head banging.
Injury To Skin, Hitting/Covering Of One's Ears, Hurting One's Eyes...
Like issues related to head banging, the autistic child, in my opinion may have actual sensory reasons for self injurious behaviors such as "picking" constantly at the skin (issues with touch), or for engaging in self injurious behaviors as they related to auditory and visual processing. The natural opiate effect of casein and gluten and the possible issues with foods high in phenols (apples, bananas, raisins/grapes, tomatoes) may be the culprits behind such behaviors. There was also the belief by many, including myself, that mercury and other toxins from vaccinations, and possibly dental fillings, somehow impacted the senses in a very negative way, perhaps affixing itself to key nerves and as such, causing physical neural damage in the areas of sight, hearing, touch, taste and smell. I, personally, was not knowledgeable enough in this area to really address it, however, LD Wedewer, US Autism Ambassador, and Andy Cutler, a PhD in Chemistry, certainly were. For more on this subject, and the names of absolutely invaluable books written by both LD Wedewer and Andy Cutler, and also by Karen DeFelice, please see First Steps For Parents! These three books (in addition to mine), I suggested all parents of the autistic read. These books, when combined, would give all parents a excellent understanding of the many critical issues as they related to vaccinations, mercury and also, enzymes.
Did I suspect that mercury and other toxins found in vaccinations played a role, based on what I did know? Absolutely!
Again, in my own son, many "sensory type" issues improved once on digestive enzymes. For example, my son, Zachary, used to have serious issues with anything being on his skin that did not appear to belong there in the first place. This included bandages, as well as scabs... and once a scab was formed, Zachary did not seem to understand that it was "part of the whole" and hence, he continuously tried to remove it... only making it worse. Labeling this "part" of the skin as a "scab" or "broken skin" and saying it would fix itself gave it an entity in and of itself and as such, Zachary was better able to tolerate "this thing" on his skin.
Hitting of the ears, in addition to having possibly "truly sensory" issues due to casein and gluten, and/or vaccination injury, could also be simply another coping mechanism. The autistic child was used to "certain sounds" and when "unexpected sounds" were introduced the autistic child simply could not make sense of them... I believed they were perceived as a "new part" to the "whole"... a new part the child was unable to make sense of. Thus, hitting of the ears or covering of the ears, in my view, was very much a coping mechanism as the child attempted to "block out" the offending "unexpected and/or new" sound.
The act of covering one's ears, in Zachary, was also due to his "not wanting to hear something"... yet, another way for him to "ignore what he did not want to cope with". The most specific example I could provide of this had to do with the phrase "get to bed". As I worked on the computer one night, before I knew it, it was approximately 9:30 at night. The children had quietly put in another video and knowing fully that they were well past their bed time, they were being rather quiet - truly "little angels" in order not to bring attention to the fact that they were still up. As I looked at the clock above my desk, I realized how late it was and said: "ok, get to bed". I got up and went the few feet to where the children were sitting. As Zachary saw me standing next to the couch and heard me repeat "ok, get to bed", he immediately put his hands over his ears and said: "no... no get to bed". :o) Of course, my heart melted as I laughed a little at his desperate attempts to stay up. I simply said: "You want to stay up? Then you have to ask and say: 'mom, can I stay up, please'? ". Zachary repeated the question/request and I, of course, stated he could stay up a little longer. So there you had it... yet, more proof that putting one's hands over one's ears was not simply an issue with sound frequencies... it was an issue with sound "content". When “content” was the issue and Zachary covered his ears, I walked up to him, softly told him to take his hands off his ears, and told him to “listen” as I explained what was expected.
Breaking Eye Contact With People And/Or Objects
UPDATE Dec. 2005: See why FACE BLINDNESS may be a huge issue that has for the most part gone "unrecognized" in these children. Many who are on the autism spectrum may be suffering from this. This is a critical issue which can go a LONG way in explaining why these children break eye contact or prefer to look sideways using their peripheral vision. Persons who suffer from FACE BLINDNESS (and it is known that many on the autism spectrum do) say that looking straight ahead provides the worst vision for them and that using their peripheral vision is best. This would obviously also explain a great deal in terms of issues with "reading emotions in others" since the eyes and mouth are the two parts of the face persons with FACE BLINDNESS have the most difficulty with. It would also explain a whole lot of things in terms of "social issues" in these children. FACE BLINDNESS is truly an issue all parents of children on the autism spectrum need to be aware of! I still see this as a "coping mechanism" ... just one with a very new and critical twist! END OF UPDATE
In my view, as with auditory issues, I believed there were several things at play when it comes to issues with sight. In the most severe cases, autistic children actually attempted to gauge out their eyes. :o(
In my opinion, there were definitely specific sensory issues due to the natural opiate effects of casein and gluten and/or vaccine injury on the brain... issues as they related to certain light intensities, for example. However, it was also my opinion that those situations that involved the autistic child's inability to cope with partiality - where what the child actually saw - the "parts to the whole" that were not understood, created for the child such intense frustration that the child simply tried to hurt his eyes in order not to have to deal with partialities – to not have to deal with all these “pieces” in his life that made no sense!
Given what we did know about casein, gluten, phenols and the improper functioning of enzymes naturally occurring in the body to deal with these substances very likely due to vaccination injury, it was obvious there were huge immune system issues in the autistic as well, as huge issues in how their bodies functioned overall, in terms of the digestive process (i.e., impairment of proper enzyme, pancreas and liver functioning), as well as impairment in how the brain perceived and processed information from the five senses. The proper integration of sensory input as it related to “the whole” was simply not there! The fact that this impacted all senses the same way made me believe this “integration issue” may be more readily identifiable in that it seemed to occur in those areas of the brain primarily for sensory input – overall, and, specifically, in relation to “partiality processing”.
The brain failed to see the whole without first understanding all the parts that made up the whole. In a normal person, this "integration of parts and the whole" was pretty well automatic or subconscious. In the autistic child, it was my opinion, that for reasons mentioned above, this ability had been severely, if not completely impaired and as such, in everything, the child had to painstakingly consciously put "everything back together", and his failure to do so resulted in a life of complete frustration and stress!
In my opinion, in addition to addressing issues of diet and vaccinations, the key to helping the autistic child minimize self-injurious behavior as it related to the inability to cope with issues of partiality was in the use of key coping mechanisms to help the child "break the code" to his world - accomplishing this via the use of labels, explanations, fractions, words of quantity, etc. These were the keys to reducing and/or completely eliminating many of these behaviors in autistic children. For more on this issue, see my sections on Auditory Issues, Breaking Eye Contact: More Than Meets The Eye, and I Don’t Like To Be Touched!
Another very characteristic aspect of the autistic child was that of not maintaining eye contact. In my opinion, breaking eye contact was also, frequently but another coping mechanism used by autistic children. This was definitely one where there was "more to it than met the eye"! It took me a very long time to finally figure this one out! Breaking eye contact was clearly not simply a sensory issue... an issue of the eyes "not working properly". I was absolutely convinced of that!
What followed was the text from my section on "Breaking Eye Contact" as discussed earlier. This area was so critical – to so much – that, I chose to reproduce it from my previous section. Those readers with a good memory or who did not want to review this section, could skip down to “Making Eye Contact” as a coping mechanism.
Breaking Eye Contact ...
More There... Than Meets The Eye!!!
When it came to eye contact in the autistic child, many a parent would attest to the fact that maintaining eye contact with an autistic child was a difficult task indeed.
Autistic children had issues with vision and many seemed to be helped by enzymes and cod liver oil (use only a brand that has been tested for heavy metal content... check with manufacturers). Most parents on message discussion boards seemed comfortable with a brand called Nordic Naturals, but, again, I advised all parents to do their homework… and check each time you buy a product as they can change over time. The website for this particular company was: http://www.nordicnaturals.com/consumer/products_codliver.html.
Zachary recently experienced such a negative reaction to cod liver oil that I will never again give him any cod liver oil. I encouraged all parents to read the account of what I believed to be a reaction to cod liver oil, and the possible mercury it contained, on my website: http://www.autismhelpforyou.com. The pictures I provided of this reaction would truly be an eye opener, and “jaw-dropper” for all parents. The brand I had was purchased from a local health food store and was made by a company whose website stated the oil was indeed tested for heavy metals. Zachary's reaction was so severe, however, that I have decided to have the bottle's contents tested (results will be posted on my website once I get them). I encouraged all parents to read my section on our personal experience with Cod Liver Oil and to be aware of what I believed was a very real and serious issue for children with autism.
Note: The particular bottle I had, I had used in the past and was about half way through it. Previously, Zachary had been fine with me rubbing the contents of this bottle on him. I had seen no reaction to it in the past. I wondered, however, if the fact that I was on the “last half” of the bottle was the reason he reacted so badly… I suspect that if his reaction was as a result of mercury or heavy metal content in that bottle, that the “last half” would most likely contain the bulk of these metals as they settled to the bottom. Although the manufacturer’s website indicated their products were tested for heavy metal content, I later discovered that often, this testing was done by “third parties”. That could be an issue in and of itself too! All this was just a theory, but certainly one that would explain why this happened. I just could not in my heart attribute this reaction to anything other than the cod liver oil! Time – and testing - would tell! If I was wrong in this conclusion, I had no problem with admitting that, but for now, this was my “best guess” as to what had happened to my son – and I was now a very observant mother!
In the past, I had used cold liver oil because the vitamin A in cod liver oil helped remove issues with "sideways glances" while enzymes seemed to help many, many children, including Zachary, give better eye contact.
As with so many other issues with "the senses", however, I truly believed that in terms of breaking eye contact, there was more here than met the eye!
What continued to puzzle me for a long time was the fact that even with things to physically help restore the functioning of the eyes (i.e., the cod liver oil I had used in the past and possibly the enzymes), I still felt Zachary had great difficulty maintaining eye contact. He had made some progress, but then, he always seemed to slip back somewhat. I knew it was not that he could not physically look at me. There were plenty of glances into each other’s eyes that I had so cherished. So, if it was not completely a physical issue, that the "capability" to make eye contact was indeed there, then what was it? Why did Zachary so regularly and so completely want to avoid eye contact so often?
It did not take me very long to understand this behavior when I considered it in terms of issues with "partiality". Breaking eye contact was simply another coping mechanism for the autistic child. If you think about this in terms of the autistic child's inability to deal with the partial and to properly process information from sensory input... again, it all made perfect sense.
For example, the act itself of looking someone in the eyes involved "looking at 2 eyes"... that in itself was difficult for the autistic child since he could not deal with "partials" ... and the 2 eyes were simply 2 parts of the face... that in itself was a problem for the autistic child and was enough to make him want to break eye contact. But, the "part" that I had missed for so long when it came to eye contact was the fact that breaking it... with anything...a person or object… was also a coping mechanism for the autistic child. The child broke eye contact with anything that was "partial" or offended him...in the sense that it had not yet been “decoded”… be that his mother's eyes or a book. Not able to deal with the "pages"... the "parts of the whole book", the child simply chose not to focus on a particular page, but rather, often simply turned all the pages quickly, shut the book and tried to run away!
I had started to pay more attention to this issue of eye contact recently. I believed it was important to label each eye for the child... the left eye and the right eye. I believed it may also help to say that: "the left eye is to see things on the left" and "the right eye is to see things on the right"... and "both eyes are used to see everything - together". Again the use of labels was critical and for the autistic child, these labels had to be very, very specific when first explaining exactly how "parts" fit together to form "a whole". Just labeling these 2 things as "eyes" would not do it... you had to label each eye and explain its purpose. This was also true of all other body parts having a left and a right – although the eyes, given their proximity to one another and their “motion”, obviously posed a greater problem for the autistic child. See section on Motion also.
Look At Me!!!
Why "Looking Through You" And Blank Stares Are Simply Coping Mechanisms...
This issue with the inability to properly process partiality also explained why the autistic child always seemed to be "looking through you" rather than "at you". As with the “deaf child” who did not understand “his label”, if you think about it, when a deaf child “looks through you”, it was most likely due to the fact that he did not understand “another person’s label” either. A “person” in the child's environment was but a "part" to the "whole" ... if the child was unable to integrate "that part", "the person", then, that person was "not seen" in the sense that the child simply refused to “ignore” that sensory input of which he could make no sense. Each person, after all, came with his own physical appearance, his own voice, etc. This, combined with the desire to break eye contact because "2 eyes" - "two parts to a whole" created a stressful situation for the autistic child indeed made for a difficult task when it came to making a child "look at you".
Just as the "child" needed to have "his label", so too, did I believe, he needed to understand the labels of those around him… "the part" like "mommy" or "daddy" or "a friend" … labeling these, would greatly help the child in this area of "looking through you".
With Zachary, I found his greatest areas of difficulty involved both partiality and motion. Parts to the whole - input that involved motion - were always the most troublesome in terms of being properly perceived. See sections on Motion and Safety.
Blank stares also now made more sense. The eye, by design, needed light in order to "see", but, much of our sight was also dependent on motion. In fact, the eye itself was an object in constant motion, forever adjusting to light as it moved. In addition, the very act of "seeing" involved motion. Your eyes were not "blank stares" as they observed objects... rather, they were constantly in motion. In a normal person, to do what an autistic child did in terms of "blank stares" was a very difficult thing to do. To simply "stare" at something, without moving your eyes was indeed almost impossible to do. Yet, in the autistic child, "blank stares" were commonplace. Why was that? Why was an "activity" I considered so difficult to do - staring at one spot - something the autistic child engaged in so much? Was this simply another coping mechanism - the autistic child's attempt at doing away with motion or any other stressful situation? I truly wondered! After all, when Zachary had recently had what I believed to be a very bad reaction to cod liver oil, blank stares once again appeared... when they seemed to have previously been almost non-existent! Perhaps "focusing" in this manner was simply a way of putting all one's energy into "coping" with a particular situation, such as the stress involved in an allergic reaction! I truly wondered! Blank stares were perhaps simply the result of intense focus in trying to “break the code”… to understand how various parts fit into a whole.
So, herein was what I believed was the critical issue with eye contact... the fact that the autistic child used "breaking eye contact" and “blank stares” as actual coping mechanisms to not have to deal with what was perceived as "stressful" - if you did not physically see the "parts" you could not make sense of, then as the saying goes: "out of sight, out of mind"... and stress levels were thus greatly reduced for the child. In my opinion, there was something else to “blank stares” though…the intense focus in autistic children when giving blank stares made me believe they were somehow attempting to “retrieve information” to cope with the situation at hand. Eye contact - something so critical in teaching, yet so difficult for the autistic child! So, what was the answer?
Not surprisingly, again, I believed labeling was key in helping with overall issues of breaking eye contact as this related to the autistic child's coping strategy.
I, personally, had recently spent more time with Zachary on this specific issue. I decided to label everything for him when it came to "his eyes". What I decided to do was to not only label each eye as "this is your left eye" and "this is your right eye", but to also physically show him the purpose of each eye. Therefore, I covered his left eye, for example, and said, "your left eye is to see on the left... if I hide it, you can’t see on the left". As I did this, I positioned myself out of his line of sight for the left eye so that he could no longer see me. I then did the same thing with his right eye. Then, I finished by uncovering his eyes one at a time and saying: "left eye plus right eye means I can see everything". After doing this a couple of times, I could tell Zachary understood the purpose of having a "left" and a "right" eye. In a very short time, I could already see that this helped him to better tolerate the "parts" (the eyes) to the whole (the face) and I was hoping that this would also help with his issues with eye contact in general... that he would come to understand that he needed both eyes for a reason... to see everything. :o)
The autistic child needed to be a visual learner when the visuals "did not offend", but perhaps needed to be an auditory learner as well, in instances where the visuals were just too much to cope with.
So, how do you maintain eye contact on those objects such as the pages of a book that a child needed to focus on to learn? The key may be in drawing attention to the "ordered" parts... perhaps the numbers on the page - the child may then be able to proceed more easily. Counting was a coping mechanism the autistic child generally loved... thus, it may be that simply drawing attention to page numbers, showing the pages "as parts to the whole book" would suffice.
Perhaps we needed books that were labeled showing the parts and the whole for the child... so that instead of just one page number at the bottom of the page, you had something like this:
1 2 3 4 5 6 7 8 9 10
with more of a "whole" provided by counting, and yet the current page number, 4, showed more brightly to show "this" was the current page and that we had more to go. I tended to think such visuals would help the autistic child want to “keep going” through the entire task of reading a book due to his desire to “complete the task” and get to “10”.
I encouraged any parent who has "found a trick" to maintaining eye contact with both people and things to share their insights by sending me an email via my website, http://www.autismhelpforyou.com. I truly believed parents held within them observations and techniques, perhaps even unknowingly, that were surely key to further removing the shackles of autism. Perhaps as more parents came to understand autism in terms of the inability to properly process the whole without first understanding the partial, many more "tricks to the trade" could be uncovered by parents in order that, together, we may help as many children as possible with so many issues. :o)
Given eye contact was so critical to learning, this was certainly one of many areas where I did believe that behavior therapy could be necessary provided the therapist understood these issues with partiality and the inability to properly integrate information from the senses! Simply teaching eye contact with a therapist saying: “look at me” would not be enough... you had to teach the “parts” to why eye contact was done, and to teach eye contact with "things" too... books, papers, blackboards, objects of any kind necessary in teaching.
Behavior therapy now became much more necessary for these children because the key was to teach each child how to go about integrating all aspects of his life for himself… to teach that child the necessary means by which they could themselves decode their world – a huge task indeed!
To see "other things" I did to help Zachary increase his eye contact, please refer to my section called "Exercises I Do At Home".
Making Eye Contact With Certain Objects
Just as breaking eye contact was a coping mechanism for the autistic child, in some cases, so was making eye contact with specific objects. For example, I found that when Zachary was very stressed out, all I often had to do was position my car next to a large truck and allow Zachary to "look at the spinning wheels". In stores, all I had to do if he was too stressed out was simply "point out a ceiling fan". These simple things provided a great way to de-stress Zachary while on trips or errands and as such, making eye contact with specific things was also a coping mechanism in the autistic child.
Physically Removing Oneself From An Upsetting Situation And/Or Object...
Creating "Synthetic Order"... And Issues Of Hyperactivity...
The physical removing of oneself from an “offending situation” or stressful situation where the “parts to the whole” were not understood was but another coping mechanism used by Zachary.
This explained why pretty well all children with autism seemed to be constantly "running off" as parents chased after them in the hopes of teaching them or having them complete a task. I found Zachary not only "ran away", but when he removed himself physically from a stressful situation, he usually moved right to an activity that helped him in terms of providing an "order fix", a way in which he tried to bring order back to his world when it simply made no sense at all. "Order fixes" could take on many forms.
For example, Zachary climbed on the couch from one end, walked across to the other end and then got off... or continued onto the next piece of furniture... moving from one end of it to the other. He would do the same thing as he climbed onto the kitchen table... he would go from one end to the other before he got off. Never did he "get off in the middle" of the piece of furniture – until taught about “middle” or “sides”. He had to "complete the task", much like he would "walk the line" on a street... he had to "follow" the furniture from one end to the other. If I was on the floor, Zachary would "walk the line" by starting at my feet, trying to physically walk over me, from my feet to past my head. When he first began to do this particular activity, I did not understand it... and of course, I always tried to "push him off" by the time he got to my neck, but, soon, I came to realize what he was doing... he was using me, too, as a way to physically get an "order fix"... he was again, "walking the line"... only in this case, the line was my body... from feet to head... and he kept starting over, going back to my feet if I pushed him off before he completed the task and actually made it past my neck and head! He was creating a "synthetic order" where none had existed. The furniture and my body came to be "perceived" as "lines to walk".
Zachary's constant need to synthetically "walk the line" made it so that he was constantly "walking across furniture" and as such, I often saw him simply as "hyperactive"... but, again, I believed I had simply "missed" what was truly going on.
This issue was not one of “hyperactivity” per se... it was simply another one of Zachary's coping mechanisms, another way to deal with the stress of daily life and to bring order where none existed! This, I came to call the "child in motion" syndrome as opposed to "hyperactivity" because the constant "child in motion", in this case was truly not an issue of hyperactivity! The label of "hyperactivity" had too many "implications" associated with it for me to use this term to describe this particular coping mechanism I believed was so often mistaken for hyperactivity! I encouraged parents to keep this distinction clear!
For more on the issue of physical removal from offending situations, see the "Exercises I Do At Home"... exercises that showed me this issue with "the child in motion" and physical removal so well... specifically, the exercises that related to "The Plastic Eggs!"
Note: I first wrote this section just after writing my first book, Saving Zachary: The Death And Rebirth Of A Family Coping With Autism. At the time I wrote my first book, I knew order was a key factor for these children... it was only later that I came to see that "within order" the key to it all was the autistic child's inability to deal with “partialities” or “parts to the whole”... the "not complete", the "not whole". Although this section made sense when viewed in terms of “order”… it now made “complete sense” when viewed in terms of a subset of the ordering function, the inability to properly process the parts to the whole. When you read through this exercise, you could now clearly see that order played a role, but more specifically, that the issue was in the inability to deal with "partiality
Hyperactivity could be an issue for some autistic children (i.e., children who ate too much sugar, or did not have enough magnesium, etc.), but, in all honesty, I did not believe it was as pervasive an issue as many currently believed and that the issue was more one of the autistic child in motion and his use of motion as a coping mechanism. This certainly explained the constant running away we saw in these children, the constant jumping, and the apparent inability to be able to sit down long enough to learn anything - as it also explained why so many children were still "hyper" in spite of being given medications, magnesium, epsom salt baths/creams, and other supplements known to help with "hyperactivity".
All persons had a tendency to "walk away" from stressful situations or situations they simply do not want to deal with. I, personally, had done this on many occasions at work whenever I had a project I simply did not want to delve into. It was so much easier to delay the task, to get a cup of coffee, go talk to co-worker, etc., than to have to deal with actually starting an unpleasant activity.
I knew I had been an excellent employee, yet, I too, to an extent, suffered from this type of "hyperactivity" when it came to doing a task I considered most unpleasant. In reality, I think all persons naturally reacted this way. In an adult, there were always the "consequences" of "not doing something". In a child, however, especially an autistic child, I suspected this particular coping mechanism of "running away from the unpleasant" had too long been mislabeled as "hyperactivity".
Thus, again the key to truly decreasing "hyperactivity" - which in reality, I believed probably to be more an issue with the "child in motion issue" rested in removing areas of frustration in the child's life/ environment by helping him to understand those things that, to him, just did not make sense. If the child did not understand the parts to the whole for teaching materials being placed before him, there was no doubt in my mind that he would continue to "run away" in order to cope with the frustration resulting from what was being put before him.
The final thing I wanted to mention, as it related to "hyperactivity" was that, often, it could truly be a physical issue for many reasons. These included lack of magnesium, too much sugar, as well as issues with parasites (i.e., worms). Parasites were a serious issue for all family members and I encouraged all parents to become informed in this area as well, for this too could make a significant difference in one's behavior. I recently treated Zachary for parasites and indeed found that it helped to calm him down somewhat! :o)
I did believe that behaviors engaged in by the autistic (i.e., licking, eating sand, etc.) made them prone to parasitic infections!
The fact that the autistic child used "physical removal" of himself as a coping mechanism was also clearly evident in many other behaviors we so often saw in these children. Zachary's "security cocoon" - the physical wrapping of himself tightly in a blanket was but one example of this. Physical "removal" of oneself took many forms in the autistic child. It was seen in their "blank stares" as they mentally removed their glance and thoughts from something they could not deal with and simply chose to "ignore" by “looking through it”. It was seen in the "deaf child" syndrome as the child chose to "remove himself" by physically "not hearing" certain sounds. For obvious reasons, this selective hearing and selective sight we so often saw in the autistic had serious implications when it came to the whole issue of safety for these children and as such, these particular “coping mechanisms” could literally be a matter of life and death. The challenge was to ensure that everything was "seen and heard" as it should be!
As with everything, in Zachary, I found the key to this issue as well was to make use of labels in everything and to help Zachary "break the code" that would lead to a greater understanding of his world.
Ritualistic Familiarization Processes...
What's The Fascination With Stacking And Aligning Objects?...
In my first book, Saving Zachary: The Death And Rebirth Of A Family Coping With Autism, I mentioned how Zachary, whenever he received new "tools" such as pencils, crayons, blocks, flashcards - anything - always engaged in an almost ritualistic familiarization process. What followed was an excerpt from my first book:
"For each new thing I introduced as a tool, I had to give Zachary the time to get "acquainted with it" by allowing him to touch or play with the new item until the “newness” had disappeared. It could take several days for this ritualistic process to be completed. Anything new first had to be made “familiar” to Zachary before he even considered using it “appropriately”. He went through an almost “ritualistic” familiarization process...stacking, spinning or aligning new things best he could. That had, in a way, also been true with his toys. New puzzles could not be used as puzzles until the pieces had first been “stacked” one on top of the other, then scattered. Flash cards could not be read until they had been stacked one on top of the other, then scattered. New cars could not be used as toy cars until they had been flipped over, and the wheels spun endlessly. Everything went through some kind of ritualistic familiarization process. Once the “newness” was gone, the new tool introduced could be used for its intended purpose... Zachary had to somehow "get to know" each object before it could be used for its intended purpose."
At the time I wrote the above quote, I suspected "order" was the issue for these children - indeed, I was "close" - a few months later, I came to see that the issue truly was in a subset of the "ordering function", specifically, in how the autistic child processed or "orders" the parts to the whole. The above quote clearly illustrates how Zachary indeed "ordered everything" in the constant quest to understand new objects. It also clearly indicated that with these new tools, "all similar objects" were treated as one... all cards were stacked together, all pencils were aligned, etc. There were never separate piles of "one type of thing" because in order to understand the whole, Zachary had to somehow figure out how all these "similar parts" fit together to form the whole. When the object had multiple separate, unique "parts", Zachary attempted to "put the parts together" by aligning or stacking them in order to understand how "together" they somehow formed a whole. Thus, each card was "a part" in and of itself, each pencil was "a part" to the whole in and of itself... and Zachary constantly engaged in activities to "join the parts"- to see how they fit together! He was constantly "trying to break the code"! Although such activities used to drive me almost insane, when seen for what they were, a coping mechanism used by the autistic child as he tried to figure out his world, I now believed that I would no longer try to stop such activities but, again, try to explain to the child just "how these things" fit together by labeling the objects as much as possible.
I must admit that when this was a bigger issue for Zachary, simple labels did not seem to be enough to eliminate these behaviors, however, because long after Zachary "knew" the labels, "that these were pencils", "these were puzzle pieces", for example, he still tried to stack and align objects for a long time. This behavior still showed up somewhat when he was very tired or frustrated, but it was much better than it used to be and I fully expected that as Zachary learned more about his world, that this behavior may completely disappear. I suspected that his issues with still needing to stack and align objects resulted from the fact that I had not been "specific enough" in my labeling... perhaps each color had to be labeled (especially given the important role I suspected colors played in the life of the autistic child - see section on Colors), perhaps each puzzle piece had to be labeled somehow, with a "specifically assigned number"... I suspected that would have helped more than simply saying: "these are puzzle pieces" in terms of helping Zachary see how the parts fit together to form a whole. I suspected that if I had somehow brought "more order" to his understanding of these pieces that he would have been able to move past these issues much sooner. The key was not only to label these objects but also in providing an explanation as to their purpose or function in life. To define how their role fit into the whole as well!
Creating New Entities To Avoid Or "Ignore" The Old...
Much as Zachary "created new entities" by making "pencil trains", etc., as he aligned all these objects, Zachary also created completely "new entities" from those things that caused him stress. The best example I could provide of this was that of his "Fraction Stax truck" in my section on "Fractions" (see First Steps For Parents!).
The following excerpt from my section on Fractions illustrated how the autistic child "created new objects" to avoid dealing with the "current" object at hand (in this case, fraction pieces - truly parts to the whole).
In the pictures below, Zachary decided to make a "Fraction Stax Truck". He decided to create "a new whole" with the "parts" before him... yet, another coping mechanism... only this one has a double-edged sword!
The creation of the "Fraction Stax Truck" allowed Zachary to cope with "the in between", the "partial", because, now the object before him was no longer a "Fraction Stax" with missing pieces that caused so much frustration, the object BECAME a Fraction Stax TRUCK... It was no longer its previous "self" and had been replaced by a "NEW ENTITY".
This object was then identified by Zachary - himself - as his "Fraction Stax Truck and Trailer". Since trucks and trailers varied in real life, he seemed perfectly fine with having "partial" pieces on the truck... it did not have to be perfect... for the "new object" to look like a truck was sufficient. A trailer could have "pieces" on it, because trailers hauled stuff often with only partially filled trailers... and so, even fraction pieces were ok.
Zachary now saw the "Fraction Stax" not as the tool it was intended to be but as a whole and new entity... a truck. He was happy and content with that new entity. Frustration has left him - he was clearly able to "walk away" and "leave his truck" all by itself... while still looking at it... something he had not been able to do with the "original tool". In the past, physical removal meant a complete break in eye contact, too. Gone was the need to scatter all pieces, the tool had been replaced by something Zachary could better cope with... a new and whole entity... in this case, a truck and trailer... and this now became his focus... and joy!
Zachary no longer wanted to use the object as a learning tool to teach fractions. He simply wanted to "make his truck" no matter how hard I tried to simply use the tool to teach fractions again. So, the "creation of a new, whole entity from partial entities" became a coping mechanism with a double-edged sword. The trick, perhaps was to make absolutely sure Zachary had learned the concept of fractions before he was allowed to use the tool as "something else". A tool I had been so anxious to use with Zachary now became almost completely useless. I decided to put it away for a while and then take it back out much later in the hopes that I could once again use it, at least a little, in the manner it was intended to be used... and I was able to do that, but in no time at all again, the "Fraction Stax Truck" was back! This, indeed, was a HUGE problem!
Over and over again, I had seen Zachary "take" to a specific task and then not want to do it any longer. He "just did not seem interested in learning the concept any more" - he had turned it into something with which he could better cope and so, it became very difficult to teach him because repetition was needed with so many things in learning... yet, his coping mechanism of creating a new, whole entity with my tool prevented that repetition from occurring.
This had been a very difficult issue to overcome with Zachary - and I suspect it was with all autistic children. This certainly explained why behavior therapy could be so difficult, and so slow in terms of “seeing progress” with these children – especially given these children, as they created these new entities, appeared to be engaging in “pretend play” (i.e., Zachary pretending this was a “truck”) – something that did not “come naturally” and as such was “rewarded” in therapy.
What too many therapists failed to see, however, was that such “pretend play” was actually a detrimental coping mechanism to learning. I also had huge issues with encouraging pretend play in the autistic (see section on The Potential Danger Of Pretend Play In The Autistic Child).
In addition, the "new truck" had now taken over and it, too, had to go through the ritualistic familiarization process. The pretend truck was now “perceived” as was any other “real truck”. As such, if the “pretend truck” – now seen as a “real truck” – if that “new”, “real truck” (the one that was actually a pretend truck but was perceived as real) was not perfectly aligned or "just right", then frustration erupted once again.
Now, there could be no truck without a trailer... the wheels had to be able to sustain the whole, with no pieces falling off as that would now become a source of frustration – as it had been with so many real trucks! This was indeed a vicious cycle.
I had spent $25.00 spent on a tool had been turned into something I now had to find new ways of using to explain the same concept... or my tool became completely useless! This coping mechanism in Zachary, of creating a “new”, and “whole” entity out of my teaching tools was detrimental indeed!
In my opinion, this issue with the "creation of new entities" was generalized to all aspects of life for the autistic child and this was, I believed, the reason it was so, so difficult to teach these children.
Creating “new tools” or “new things” also explained why pretend play was so dangerous… because in pretend play, the “new entity” created, could be either an “imaginary friend” or more devastating yet, a “new entity” to replace the child himself!
As a result of this coping mechanism of “creating something new”, I constantly had to be looking for new ways to teach the same concept using tools that now no longer had the original, intended meaning for Zachary. Yet, to teach so much in life necessitated some repetition... this became an overwhelmingly difficult and exhausting task!
As such, I firmly believed that “tools” that could be used in various ways to teach the same concept were desperately needed for these children. Much in the way that “transformers” (a child’s toy) could be made into various objects, so too, did our tools for the autistic need to “transform” themselves into new entities while still maintaining their original teaching purpose!
Creating One's Own "Code To Life”...
The Possible Danger of Inaccurate or Incomplete "Reference Communication©"
Or "Reference Living©"...
I suspected autistic children also generated their own "code to life" in order to better cope with those things they did not understand. This issue was addressed under my section on The Importance Of Colors In The Life Of The Autistic Child as well as in my discussions on "Reference Communication" in the Language Section. I believed that when the autistic child was unable to "break the code" to deal with the world about him, he simply "invented" or "made up" his own code for dealing with life and categorizing everything. Color and Language were such huge sections that I would not duplicate them here but rather asked that readers go to these sections to understand this concept.
There were several issues with this. First, there can be issues of conflict between life's "real code" and that code "created" by the child "in his own world". Perhaps, more importantly, however, may be the fact that once a child created "his own code to life", there was, I believed, the possibility that the child did not perceive the need to understand or "decode" the "real code" to truly understanding the world about him, thereby allowing that child to slip further into the grasps and shackles of autism.
In terms of "reference communication" and indeed, “reference livingã”, there were also matters related to safety in that if a "new code" was created and that "code" was expected to be used for future reference, if that code was "not completely accurate and all inclusive" in terms of the "appropriate response" to a specific situation, then the consequences could be devastating - in some cases, undoubtedly even leading to the death of a child who had "memorized" perhaps only one "reference" , such as "walk or don’t walk” signs being necessary to determine whether or not it was safe to cross a street"... and as such, if no "walk" or "don’t walk" sign existed, the "reference" to draw from was incomplete, and hence, allowed the child to proceed, unknowingly, into a very dangerous situation! The verbalization of “walk” also had to be understood, for example, in terms of what it implied… so that to simply hear “walk” would not be enough to go forward – that the child also had to do the appropriate safety check to ensure that it was safe to do so in spite of the fact that someone had uttered the word “walk”. As such, multiple "appropriate responses" need to be taught to these children when it came to safety issues and they had to be taught using various methods/senses.
Creating Randomness...
A very interesting coping mechanism I observed in Zachary was that if he was not allowed to put pieces back with the whole, for example, to complete a puzzle just the right way, to put all similar objects together, etc., he reverted to something rather unexpected... creating randomness.
If the objects that belonged together were not allowed to be seen as "the whole", he simply scattered the objects so much physically that they could no longer be perceived as "a whole", as things that "belonged together". Thus, much as he had physically used "removal of himself" from a situation, Zachary also physically removed or scattered pieces so that they simply were no longer be perceived as somehow "belonging together". For more on this, see the section on: Exercises I Do At Home as they related to “plastic eggs”.
Ordering Language©, Echolalia, and Reference Communication©...
What some used to refer to as "nonsense language", I chose to refer to as "ordering language" and I encouraged all parents to refer to this behavior as "ordering language" from now on... because that was truly what it was! It made perfect sense once you saw it from the child's perspective... it was anything but "nonsense"!
Ordering language, as described in the section on Language, in my view, was a coping mechanism used by the autistic child to deal with stressful situations and to "decode" his world. In the case of both echolalia and ordering language (echolalia being perhaps simply a more "immediate" form of "ordering language), the repetition of words provided by others, whether immediately (echolalia) or later on (ordering language) served basically the equivalent function as would, say that of a child "talking to himself" to understand and cope with life. I saw both of these as absolutely critical coping mechanisms that should not be broken or stopped in any way, especially given that these related to the "real world" as it was given/taught to the child (as opposed to say the creation of his "own code" to understand the world, as described above - something that may further slip the child into the grasps of autism).
In my view, echolalia was the coping mechanism whereby the autistic child tried to decode what he was hearing "right now". Ordering language, on the other hand, was a coping mechanism used to help "sort" those things recently learned, recently “taken in” via the senses, but in all likelihood, still in the process of being "decoded" - but not pertaining to the current situation. In addition, when the child becomes frustrated, "ordering language" itself could be used as a coping mechanism in a much different way. For example, when Zachary used to be very frustrated, he often made use of one small phrase throughout the day... for what seemed to be no reason at all, out of nowhere, he would say: "green truck".
So, what was he doing when he said: "green truck"... out of nowhere? I had now come to see that there were several things going on. Zachary was always fascinated by wheels... no doubt because of the spinning effect they provided. While on the highway, if he ever got upset, all I had to do was position myself next to a large truck and let Zachary look at the wheels for a while... they provided an "ordering fix" for him as soon as he made eye contact. Obviously, I could only do this where there were two lanes going in the same direction. Luckily, in the suburbs of Chicago, there were plenty of those "multiple lanes" - of course, those drivers behind me did not always appreciate my doing this. :o) At first, when Zachary was just beginning to build his vast repertoire of coping mechanism, a truck soon became a favorite... as were colors. I was recently told by an adult autistic that as a child, he perceived objects as colors. This was all very fascinating to me. For more on that, see my section on The Role of Colors In The Life Of The Autistic Child: The Pot of Gold At The End Of The Rainbow©.
If the autistic child indeed perceived objects as colors, the use of the phrase "green truck" as a coping mechanism now all made perfect sense. These two words provided for Zachary two very strong coping mechanisms all rolled into one phrase. The color, in my view so important to the autistic child and his understanding of the world, and the spinning... the making of the partial whole... provided by the image of a truck - these two things, when combined, indeed provided a powerful coping mechanism... an actual image he could put into his mind to help him cope with the frustrations of life - on demand!
When spinning or other coping mechanisms were not available, Zachary simply resorted to verbally saying "green truck"... providing for himself yet another perfect "order fix" - a simple way to "de-stress" when life just became to unbearable or stressful!
For more on "reference communication", and its possible dangers, see the section above on "Creating One's Own Code" as well as the sections on Teaching Language and Safety.
For more on this, see: Ordering Language. Given the importance of this coping mechanism in the autistic child, I, personally, would NOT try to stop or prevent it! In my opinion, as the child learned to cope and to understand his environment more and more, this ordering language should greatly be reduced, and eventually, would most likely disappear altogether. :o) But again, the key to reducing and/or eliminating ordering language was simply in helping the autistic child see how all the parts fit together to form a whole... in everything. As with everything else, when these coping mechanisms "came out"... I encouraged parents to look for the source of the child's frustration and to help the child deal with that frustration through the use of labels, fractions, etc... those things that provided productive coping mechanisms in that they helped the child to break the code!
Counting And The Use Of Math Equations...
Autistic children, even if only a little verbal, seemed to love to count! Autistic children quickly grasped the concept of counting... because it was one with order... each number followed by another, specific number, and that never changed. As such, counting was something parents could use to their advantage in helping to provide coping mechanisms for their children. Counting was an excellent way to bring order to what appeared as a random process to the autistic child (i.e., cutting hair, brushing teeth, any process, any time of stress as in a grocery store, etc.). Counting allowed the child to anticipate "what came next"... to focus on the next "number"... the next "thing". It worked with countless situations. In my opinion, this function was key in teaching processes, social interactions, safety issues, and much, much more in the autistic child. I encouraged all parents to think of "counting" when things were difficult and a child was stressed out. The old saying of "count to 10" when you were upset was actually one of the best things you could teach an autistic child for coping with a stressful situation.
Instead of having the child focus on the situation, have him focus on "counting" in order to get through the process or task at hand. For more on this, see my sections on Brushing Teeth and Cutting Hair - Simple examples that illustrated how to use counting to your advantage! Counting was a coping mechanism both the parent and the child could use in a productive way!
In addition, other math "equations", such as the use of "equal to" or "not equal to" could be used to teach many aspects of language, like synonyms, antonyms, etc. For more on this, see my section on Language.
Words To Cope©
With Zachary, I found that there were certain words he clung to when his world became just too much to cope with. These were words that helped him "make sense" of things. I had labeled these Words To Cope©. These simple words/phrases provided a great coping mechanism in many, many a situation. Zachary came to say these, himself, when he was frustrated - in an attempt to come to terms with many issues in his world. "Words To Cope" that were particularly effective included phrases like: "it's broken" or "it's stuck". If you looked at these "words", they gave the autistic child a particularly effective way of dealing with something he did not understand... the "part" of the whole is simply referred to as something "broken" or "stuck" on the whole until it could further be explained at a later time. These simple phrases were huge coping mechanisms for Zachary and helped him cope with situations until they could be better explained and/or understood.
"It's ok...it's ok..." or "try again...", or "you can do it..." or "all done", etc. When things did not work exactly the way he wanted... for example, when a stack fell over, I would say: "it's broken" or "it's too tippy". To help him separate a part from the whole (for example - a bandage on the skin), I would say things like: "it's stuck". Again, that helped him cope with the fact that something that did not belong "was there" and that helped him cope with the "partial" (i.e. the bandage) and help him accept it as part of the whole... as something it was ok to have there since it was "only stuck there" and that explained "why" it was there.
Using "all fixed" also helped in many, many situation. These were just simple examples of words I used that I found very helpful to Zachary... parents could use these words in many, many situations to help autistic children cope with the partial they have so much difficulty with. "Bye-bye" was another one... a word to help "complete a visit" for example... much like "all done". "All done", I found helped tremendously in going from one situation to another... helping with transitions. This simple phrase helped to see completion of one task and helped Zachary anticipate the fact that it was time for the next.
Given his inability to cope with partiality in anything until parts were labeled and made entities in and of themselves, I certainly understood, why these “words to copeã”, in particular, were among Zachary's favorite in helping him cope with stressful situations.
Also - again - helping him to "understand the problem" was a great help. For example, if Zachary wanted to stack a lot of big Legos and they tipped over, I would be sure to say: "make it sturdy" and "show him how to do that" as I reinforced the base of his stack and said, "see, now it's study". Soon, as I kept saying "make it sturdy", the frustration pretty well went away and he could cope much more easily with the situation when the blocks tipped over. Of course, as with so much in the life of the autistic child, I found there was a need to constantly go over some of these same issues to help solidify them. Zachary could be perfectly fine with his stack tipping over one day, but 2 weeks later, as he tried the same task again, frustration often set in again... less intensely, but, it definitely was still there. Thus, there was a need to constantly go over some of the same issues, until one day, they were no longer issues at all... but, some issues certainly did take a great deal of time to work through - there was no denying that!
I almost always provided "Words To Cope©" when frustration presented itself. These simple phrases became part of my regular vocabulary. Other words I used were: "it's ok to be different", or "it's ok to be silly", or "let's make it different", or "let's make a funny pile", etc., ...and show him how to make things "different", or funny, or silly, etc., as I attempted to help him increase his flexibility in so many areas.
Another key phrase I used was "try again". Zachary really caught on to that concept! Whenever I gave him something he did not want to eat, now, he would tell me: "try again" (in other words, "mom, you are crazy if you think I am going to eat this!)... it was so funny! He did the same thing when I tried to engage him in activities he did not want to do, etc. I guess you could say this one became one of his "favorite sayings".
I made all these simple words/phrases part of my daily vocabulary...they helped increase flexibility... and that was key! These concepts were concepts parents used everyday with their children, to various degrees, and I suspected, this also helped explain why some children coped better than others - again, it was all in the labeling, in the use of the "right words" and in providing explanations. :o)
Music
Like the use of "coping words", music also helped Zachary tremendously. There was a time when Zachary used to scream from the top of his lungs if a song was interrupted or the radio was turned off "in the middle" of something. Songs on the radio had to be "completed"... they could not be left "partially done". What helped here was simply to tell Zachary "music off" or "radio off" to help him anticipate the fact that what he was hearing was about to end abruptly by saying: "all done". The inability to process partiality also explained why autistic children seemed to absolutely love songs.
In my opinion, there was more at play here than the simple "beauty" of a song. A song, by definition, had a beginning and an end that could be perceived by the autistic child as the words and/or music started and ended. As such, I believed this was the reason songs and/or music seemed to work so well in teaching some autistic children and why for the autistic, music was even "more relaxing" than it was for a normal child. Music, in and of itself provided a coping mechanism, too... something that provided completeness as it flowed from beginning to end and completed “a whole” – a song!
The Critical Role Of Labeling!
Allowing The Child To Categorize His World And Make Sense Of It!
If there was one productive coping mechanism in all this... it was labeling – labeling of everything, including purpose! By tagging names and explanations to everything, the autistic child came to see that everything in and of itself was "an entity" and had a purpose. Even a fraction could be an entity in and of itself even though a fraction was also a part to a whole. For example, if you label a fraction, such as 1/2, even that assumed an identity of its own... it became a "whole" concept in and of itself. As such, it was my opinion that teaching fractions as early as possible was a CRITICAL key for these children... not the adding and subtracting of fractions... just the concept of the parts making up the whole.
If you thought about it, if partiality was the issue for these children, what better way to make them understand "partiality" than teaching fractions!
Most persons would never think of teaching fractions to a 2, 3 or 4 year old. In fact, the materials I purchased to teach Zachary fractions were for grades 2 through 6. This, however, was not a concern since the only thing I needed to teach Zachary and have him understand was the fact that the whole could be "broken into parts" and that "parts" fit together to form a whole... and that "those parts" had a name, too! Once he understood that everything had a "label", he could more readily ask: "what's that?" to get the labels he needed to further understand his world.
I found that for Zachary, if I "labeled" everything for him, it helped him cope tremendously. His need for order necessitated he be able to associate a thing, an activity, everything - to a "label".
When you labeled something, even if that something was a "partial", for example, 1/2 - this was a fraction... a part of a whole, but by showing the child that 1/2 meant something in and of itself, that "partial" took on an entity of its own and was recognized as a whole in and of itself.
When rewinding the VCR while the tape "went backwards" on the TV screen (something that used to totally upset Zachary), I provided the label of: "Rewinding...It's ok...we're just rewinding...we're rewinding the tape so it's going backwards". As I said this, I showed Zachary how "rewinding" was similar to "walking backwards"... and I would tell him, "it's just going backwards" as I walked backwards to help solidify the concept of "rewinding". Knowing that this "activity" was called "rewinding" made it something he could better cope with.
It was the same thing with everything that upset him. For example, I labeled the blades of fans as “blades” to help him better understand ceiling fans and how they worked. For Zachary, walking backwards in and of itself had in the past been very stressful until I figured out that if I "labeled it" as "walking backwards" as we did it, then, he could cope with this "lack of order". Once again, "walking backwards" had taken on an identity of its own. So, as I made a game of "walking backwards", I would say..."walking backwards..." to him...and then, it became fun. It was the same thing for "walking sideways...", "backing up" (in the car), "turning around", "windows up"/ "windows down"/ "windows halfway" (in the car), "going the other way", "brushing teeth", etc. The label made all the difference!
With a process, such as "brushing teeth" or "cutting hair", I found that Zachary tolerated the activity if I brought a "sense of order" to it. So, for example, as I brushed his teeth, I would count them out loud for him. As I cut his hair, I would make him hold a bowl and I would count the "clumps" of hair as I cut them and put them in the bowl. That brought "order" to a process. Eventually, I could easily do these activities without the "counting". At first, Zachary found it a little stressful without the "counting", but he adjusted since we had "done this" before, and that, in itself, provided a "frame of reference", an understanding of the activity, its approximate duration and end result.
If I labeled every object, every activity, everything...it helped him cope tremendously because he now "understood what that was"... and even a "partial" had a "whole" entity in and of itself when you labeled it (i.e., 1/3.... this partial was 1/3... 1/3 represented something in and of itself).
Labeling something as "in the middle" and showing him exercises with things "in the middle" (i.e., a big stack of blocks, a small one and an "in the middle one") helped him grasp the concept of "in between" situations. Or simply labeling the stacks as "big", "bigger", and "biggest". Such concepts as big, bigger, biggest, small, smaller, smallest, tall, taller, tallest, short, shorter, shortest, some, more, most, etc. - all these became instant sources of fascination and amazement for Zachary because they helped him understand the "in between" situation!
Labels also helped Zachary with sensory issues as well. When he heard loud vehicles go by, Zachary would always cover his ears quickly. I found if I said: "that's a broken muffler", or in a food store, when the humming of the freezers or the ceiling lights was quite audible, even for me, I would tell Zachary something like: "those are loud freezers...listen... can you hear the freezers?", and that would help him cope. The P.A. systems were still challenging... some stores had them quite loud and that still startled him. I found that if he was distracted, however, he could better tolerate those as well. Now, when Zachary heard a loud car, he himself said: "it’s a broken muffler"... and he was ok with the loud sound. I did believe there were times, however, when his ears actually "hurt" from the noise. Auditory issues were among those I hope to further address this year.
A simple way to help with auditory issues was to buy Zachary a pair of "shopping ear muffs". We kept these in the car, and wherever we went, we asked: "do you want your shopping ear muffs", and he would answer "yes" or "no" depending on the place we were going to. He knew the types of sounds in these places and as such, he could decide whether or not he needed to wear his ear muffs. At first, I made him wear them in all stores... and he loved them. Of course, the earmuffs themselves had to be defined for the left and right ear. Each part to that entity had been described and their purpose of “helping his ears” had been explained also. In no time, he chose to take them off himself in specific locations but to keep them on in others. Most people simply assumed he was listening to music when he wore these. :o)
Labeling everything - was an absolutely HUGE help for Zachary!
Zachary soon learned to actually "create" his own labels too – his own verbal attempts at coding objects. As he verbalized these, I would search out "what he was trying to say", "how he was seeing things" and I would then further explain the object of his intrigue in order to help him better understand it.
For example, Zachary came up with the word "truck train" to define "freight trains" because the engine looked like a "big truck" and the cargo was often actual “truck trailers”, whereas more streamlined passenger trains, he called "car trains" because they had people on board. Freight trains, like trucks, moved cargo and emitted quite a bit of pollution in the form of "smoke". Passenger trains, like cars, moved people. Understanding Zachary's "view", his “reference communication” of trains made it simple to explain the difference to him and provide the proper labels of "freight trains" or "cargo trains" and "passenger trains".
Another label Zachary came up with was that of "flower head". This one he came up with as he watched Dr. Seuss' "Daisy Head Maisy"... the story of a little girl with a flower growing on her head. To a therapist, "flower head" would indeed be "odd language", but when understood from Zachary's perspective, it all made perfect sense! I found Zachary's sister to be a huge help in understanding Zachary because she had watched the same videos he had, learned from the same software packages, etc. A sibling was an invaluable resource when it came to understanding Zachary's "talk". The key to "Zachary's labels" was simply to make sure I clarified his "funny labels" so that he truly understood "real life". In the "flower head" example, I made it a point to show him that flowers did not really grow on heads... that they just grew in dirt or sand. Given my concerns with "pretend play" and the autistic child I was always certain to make absolutely sure that Zachary understood what was "real" and "what was not real"... and again, labels helped me to do that!
Labels and fractions, when combined, made for a very powerful tool for the autistic child in terms of helping him overcome issues of partiality! For more on this very critical issue, see my sections on: Using Fractions (under Exercises I Do At Home), Words That Teach Quantity (under Teaching Language), and Words To Cope© to see how each of these could be used in "labeling" everything for the autistic child.
In thinking back, it occurred to me that although, in general, Zachary, for a long time, hated to even open a book, the one type of book he had actually liked in the past had been the "I Spy" books by Jean Marzollo. I now understood why - these books provided a fantastic opportunity to label countless items and for Zachary that provided a greater understanding of his world.
The key to labeling was to eventually have the child ask for the labels he needed by always saying for example: “Zachary, say: what’s that?”… and then providing the answer when the child asked the question himself!
Labeling - via the use of fractions, words to teach quantity and words to cope - was in my opinion, the most powerful tool parents had in helping them recover their autistic children! :o)
Obviously, of those coping mechanisms listed above, several could be used by the parent to help the child cope with his environment. Using positive coping mechanisms such as labeling, counting and words to cope, etc., were productive ways of helping the autistic child cope... and as he came to better cope with everyday life, I suspected those coping mechanisms that were much more negative (such as self injurious behavior, biting, "the child in motion", spinning, etc.) would slowly be eliminated from the child's repertoire of coping skills.
The above were a listing of coping mechanism I myself had come to recognize in my own son, Zachary. There were perhaps countless others that have yet to be identified!