How The Autistic Child Deals With His World And His Inability To Properly Process "Partiality"...
And How Parents Can Use These Coping Mechanisms... To Their Advantage! :o)
Throughout these materials, I have identified what I saw as "coping mechanisms" in my son Zachary as I came to truly understand what, in my opinion, is at the root of most of his problems: the inability to properly process the parts to the whole.
Zachary and I suspect many other autistic children, have a rather extensive repertoire of coping mechanisms they make use of to deal with the frustrations of everyday life. These include:
· Spinning And Other Visual Stims
· Hand Flapping
· Toe Walking
· Odd Behaviors
· 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 To Avoid Or Ignore The Old
· Creating One’s “Own Code To Life” (The Danger Of Inaccurate Or Incomplete Reference Communication)
· Creating Randomness
· Ordering Language, email@example.com, And Reference Communication
· Counting And The Use Of Math Equations
· Words To Cope
... and perhaps countless other coping mechanisms that have yet to be identified!
Although many of these coping mechanisms have in the past been viewed as "negative" or "non-productive", in actuality, when understood in terms of how the autistic child makes use of them, there are indeed many 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.
Spinning And Other "Visual Stims"...
Simply The Autistic Child's Way Of Doing Away With The Partial!!!
Spinning is perhaps by far the most common coping mechanism we see in the autistic child. This, in my opinion, is because spinning does what nothing else can do... it makes the partial whole again. This explains the autistic child's fascination with this activity and with ceiling fans. When an object spins, its parts "disappear" and are integrated into the "whole". You can no longer distinguish the parts from the whole. Something as small as a "spec" or a "scratch" on an object, in my opinion, is enough to provide a "partial" that is made to become part of the whole through spinning. This, in my opinion, is why this activity is so entrancing for the child. It provides not only a way to cope with the partial, but, certainly that "vertigo" effect also that puts him further into his own world. This is why interruption of spinning can be so stressful to a child... especially if it has been a difficult day and there is that need for the child to "de-stress" - and one of his most important coping mechanisms for doing that... is spinning!
I've gone back and forth on the issue of spinning... whether or not to allow it. Currently, I allow some, but try not to allow extended sessions. I find that if some is allowed, some coping is provided, some stress is relieved... but, too much, in my opinion, may 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 can sometimes be, it is also a tool the parent can use to his advantage in order to help "de-stress" a child when life just gets to be too much to cope with. When Zachary finds life just too stressful and is going through a major "meltdown", all I often have to do to calm him down quickly is 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.
By creating a "new whole" via spinning, Zachary, and I suspect other autistic children, are literally able to give themselves control of a stressful situation and literally can "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, in my opinion, spinning is simply a coping mechanism that can be used both positively and negatively by the autistic child. It is used negatively in the sense that it doesn't help the child more forward in terms of actual learning but it is used positively in that it helps the child cope with life's frustrations and as such, spinning does play a critical role in the life of the autistic child. Thus, the key to reducing spinning, in my opinion, is to help reduce the child's stress levels by helping him "decode" stressful situations having to do with partiality. When times of stress are particularly intense, parents can use spinning to their advantage by using it as a tool to help the child cope and calm down until the child is 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, are used much in the way spinning is used by the autistic child in that they create the illusion that a "part" can be made into a "whole" in addition to the actual visual stimulation they provide when the object is in "quick motion" (i.e., almost a visual vertigo effect).
Another area I came to understand a little more had to do with "self spinning"... something I still see in Zachary to this day. Zachary often looked up to the ceiling or down at the floor and 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, in my opinion, was simply Zachary’s way of attempting to “decode” how he, himself, fit into his world!
Hand flapping is another one of those behaviors I see as potentially having more than one "reason". The one thing I do see, however, is how, for Zachary, this is very much simply another coping mechanism. If Zachary wanted something and it was denied him, I have seen the hand flapping set in - almost immediately after being told: "no". This was 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 - it was simply another coping mechanism. I believe hand flapping ranks 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 involves 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 creates an "illusion" of "parts being made whole". When you quickly flap your hands, it is harder to distinguish the fingers... the "parts" from the "whole". T
his particular coping mechanism does not work as well as spinning for Zachary and as such, I believe this is why he prefers to simply "spin"... he never seems 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've 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 have come to the conclusion that hand flapping is nothing more than another coping mechanism for the autistic child. It is important to note again, that since I've put Zachary on enzymes, the whole hand flapping issue has greatly subsided too...although he seems to be doing more spinning than he used to... so, again, I think multiple issues are involved here!
Of course, the increase in spinning may be very much attributable to the fact that I have recently spent less time with him than perhaps I should because I've been writing and sharing all this information with other parents. I now do a lot of writing at night when he is asleep, writing as quickly as I can so that my focus can once again be Zachary. Providing "words to cope", in my opinion, is a good way to help minimize hand flapping. I always made extensive use of "words to cope" and I suspect that indeed, they did help Zachary cope and as such, helped with the elimination of this particular behavior. :o)
UPDATE Dec. 2005: See Book 3 for more on why this may actually be an immune system response to release B6 - which is stored primarily in the muscles!
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 is now basically non-existent in Zachary, but, I suspect the act of licking in the autistic child may have something to do with an attempt by the child to "remove" something from the object being licked... that the autistic child may be attempting to remove a "part" that just does not seem to belong to the whole, such as a fingerprint on a window, etc. Since this is no longer an area I can work on as this behavior is no longer present in Zachary, I encourage all parents who have children who "lick constantly" to truly observe what the child is licking as it relates to the "parts to a whole". Once the issue is identified, the "parts to the whole" can be explained in order to help minimize this behavior in the future.
Every child screams... but screaming in the autistic child can 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 have now come to understand these screams simply as yet another coping mechanism... much as it is in "normal children" who are frustrated. The difference, however, is that the world of an autistic child, in my opinion, is one of constant frustration as a result of his inability to cope with the "partial" and as such, the screams are much more numerous than in a "normal child". This coping mechanism is magnified by the fact that for many autistic children, communication is not something that comes easily! As such, for many non-verbal autistic children, screaming is one of the few means of communication they do have... and as such, it is used as a coping mechanism to help them deal with frustrating situations - to let others around them know something is wrong and it is an effective coping mechanism because a scream always seems to illicit some kind of response in others! Screaming is a coping mechanism that, in my opinion, is a negative one. As for all children, however, it does, serve an important function in that it is a means of communicating that should be used when there is a dangerous situation. As such, in my opinion, all children, including autistic children should be taught that screaming is appropriate in order to "get help" in dangerous situations, but that otherwise, it should really not be used. I know I speak for all my family members when I say that we, personally, have heard enough screaming to last us a lifetime! :o)
As far as "rocking" is concerned, this is a behavior I NEVER saw in Zachary although I know it is 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, etc., I can only guess that perhaps this is simply another coping mechanism for the child... another way to deal with the stress of his daily life. Again, this is simply a guess on my part, but, I suspect, perhaps a good one. Even normal children find comfort and security in "rocking". :o)
Toe Walking... Is This, Too, Simply Another Coping Mechanism?
Toe walking has been observed at some time in the great majority of autistic children. Parents and professionals alike have long sought to explain this behavior.
In terms of toe walking, parent discussion boards were really what led me to believe that this too, is 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 would notice 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 just did not seem "that constipated". 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 that the colon can stretch to four times its normal size... absolutely amazing indeed... and dangerous because as more and more bacteria and feces accumulate 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 are related - but perhaps not in the manner most parents believe they are 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 is 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 take 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 make up "the whole" ... in this case, those things that physically need to occur for a child to go to the bathroom... the physical removal of "a part" of the child... his urine and stools... from the whole - his body.
Walking on toes creates 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 I prove this? No. 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 one 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!
In addition to the obvious "odd behavior of spinning", parents of autistic children can 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 encourage all parents to review my section on "Odd Behaviors" to see how these are used as "coping mechanisms" by the autistic child who is simply attempting to do away with "parts" to the "whole" he simply can 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" can take on many many forms in autistic children but, "variations of them" , however, exist in pretty well all autistic children. They are just a little "harder" to identify for what they are because there are "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" are simply attempts at dealing with issues of "partiality processing".
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 do. When Zachary could no longer spin, he proceeded to make a bite mark on my arm. I would have paid no attention to this in the past, except that lately, I had 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's arm, 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, forms 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 bite... and when they do so, it is usually because they are upset with someone or frustrated. The same is, in my opinion, completely true for the autistic child. The life of the autistic child is defined by frustration and thus it makes perfect sense that biting is 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 cannot be eliminated via spinning or other "coping strategies". 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 door frames.
The picture below, although taken recently, shows 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.
I am happy to say that having worked with fractions in helping Zachary has greatly helped him cope with these issues of "parts to the whole"... because now, I can label the window as "half open" and that "half open" becomes an entity in and of itself and is no longer viewed as a "part" by Zachary. Biting open window frames is thus no longer an issue. :o)
I do 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 do not know if that had simply been a coincidence... that I had noticed the biting on days he took phenolic foods. Since Zachary has been on enzymes, however, biting has all but disappeared. It comes back once in a while, but infrequently and less intensely.
Obviously, I can 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 understands it is not acceptable to bite.
As rare as biting is in Zachary, this is one behavior I try to extinguish quickly when it does surfaces. I understand biting provides a coping mechanism for Zachary and hence, the trick in extinguishing biting as a coping mechanism, in my opinion, lies in helping Zachary deal with frustration in another way.
As such, when biting occurs, I encourage 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 "works" - 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 have come to see that these behaviors - so present in so many autistic children - are also, in my opinion, simply coping mechanisms used by autistic children as they attempt to deal with the frustration that is so much a part of their daily life!
Self Injurious Behaviors
If there is one topic in autism that truly causes stress for parents it is surely that of self injurious behavior... when the autistic child physically harms himself. This behavior can take on many forms: biting, head banging, injury to the skin (i.e., obsessive "picking" or "scratching"), hitting of one's ears, attempts to injure one's eyes, etc.
Undoubtedly, there are certain physical issues at play here. For example, I do believe that autistic children can be overly sensitive to certain sounds and things they see (i.e., particularly bright lights, etc.). In my own son, I found many of these issues were helped with digestive enzymes. Although I do believe that these issues are related to the natural opiate effect of casein and gluten and issues with phenols as well as to issues of mercury in vaccinations, the mechanics of "how" such sensitivities occur is not the focus of this discussion.
I want to make very clear to all readers that, in my opinion, these are all serious and valid issues, however, explaining these in particular, is an area I can not even begin to address in this forum. Each of these issues would surely constitute another book in and of itself. I have a basic understanding of these issues and see how they fit into the "big picture", but there are certainly others who have a much better understanding than I do when it comes to issues of diet, vaccinations, the immune system and "true" sensory issues (i.e., physical issues with vision, hearing, touch, etc.).
What I can help readers understand, however, is how these issues with self injurious behaviors, are in my opinion, multi-faceted in that, again, I believe there is more here than meets the eye because many of these behaviors, in my opinion, also act as coping mechanisms the autistic child uses in trying to deal with frustration in his life (in addition to possibly having very real physical implications in terms of how vision, hearing, and touch actually work in these children). Unfortunately, for the autistic child and his family, these "coping mechanisms" - self injurious behaviors - are not effective and in all cases, can cause serious injury to the autistic child, further complicating his already complex and frustrating existence. :o(
The "coping mechanism" provided by these behaviors, in my opinion, is simply that they at least give the child the sense that his parents are trying to help him. This act of parents providing attention when such behaviors occur is indeed a double-edged sword. Parents need to try to prevent the child from truly injuring himself, yet, in doing so, they are also helping to comfort the child in distress...and herein lies the reason the child most likely continues and often increases the intensity and frequency of these behaviors. Through their self-injurious behaviors, these children are screaming and begging for help... and any attention from a parent does, in my opinion, provide for the child "some security"... "some comfort"... "some sense" that mom and/or dad are trying to help. The inability to understand the underlying issues in autism, however, leads to frustration and extreme stress not only for the child, but for the parent as well - often having devastating consequences!
Before we look at specific behaviors, I want to make clear to parents that my own son had some injurious behaviors but certainly fewer than may be seen in other children. I believe I may simply have "stumbled" upon how to help my son in the beginning... only much later coming to truly understanding why the things I did worked. As I came to fully understand my son, his frustration levels continued to decrease. Self injurious behavior is virtually nonexistent in Zachary. I hope that my providing these insights will also result in this being true for many many other autistic children!
Of all self injurious behavior, this is perhaps the most troubling for parents - for obvious reasons. In my opinion, there are several things that could be going on in "head banging".
First, I do believe that the natural opiate (drug) effect caused by casein and gluten and possibly, issues with phenols can make it so that these children are actually hallucinating... and, unfortunately, not all "drug trips" are good. This is one factor that could certainly explain head banging.
Another issue with "head banging" may indeed be related to physical pain being experienced by the autistic child. There are many studies that show that migraine headaches, for example, are indicative of neurological stress. 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 may surely be related to the natural opiate effect of casein and gluten... or they may have something to do with mercury related injuries resulting from vaccinations.
Dr. Andrew Wakefield, the man who ignited the "MMR controversy" in England has indeed shown that certain viruses from vaccinations are found in spinal fluid, indicating that the virus may have access to the brain. Thus, in my opinion, 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". For autistic children, head banging for some, in my opinion, may be a behavior they engage in as they attempt to somehow deal with the pain or "make it go away".
Finally, I do also believe that head banging is related to issues with partiality. As stated in my theory on autism, I believe autistic children live in a world of constant frustration, until they learn to "break the code©". As such, in my opinion, their world makes no sense to them... it is one of constant confusion and stress. Head banging, in my view, can often simply be a coping mechanism... a way for them to try to distance themselves from the "offending situation" ... those " parts " that are not understood and thus cannot be tolerated by the autistic child. :o( There were indeed several times that, when frustrated, Zachary 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 see "head banging" in autistic children, there are certain things, in my opinion, that parents can do to really get to the issues behind this behavior for their specific child. First and foremost, I encourage 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 first book: Saving Zachary: The Death And Rebirth Of A Family Coping With Autism. There are plenty of other books and websites on this topic alone. Although I've 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 want to emphasize to 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 has been shown that gluten can indeed take close to a year to leave the body and as such, in my opinion, parents should not to give up on a casein and gluten free diet - as difficult as it can be - until the autistic child has been on it for at least a year.
In addition, there are now digestive enzymes that help reduce and/or eliminate the opiate effect of casein and gluten. I encourage all parents to look into these enzymes by looking at the information under my section entitled: New Things In The Treatment Of The Autistic. These enzymes are non-prescription and help autistic children to more properly break down casein, gluten and phenols. Many parents report great results with the use of digestive enzymes. There are definitely side effects that parents need to be aware of. As such, I encourage all parents to read the documentation provided by the parent discussion group moderator for the Yahoo group: enzymes and autism. Parents can join this group by going to: http://groups.yahoo.com/group/enzymesandautism/.
The moderator for this discussion group has just completed a book on the issue of digestive enzymes and autistic children. The files available online at this site are also, in my opinion, an invaluable resource for parents of the autistic. Parents who have specific questions on enzymes or any other topic related to autism can also discuss specific issues with other parents who are using digestive enzymes for their children. This, in my opinion, is by far one of the most informative parent discussion groups.
Second, another excellent discussion group is that group which discusses issues related to autism and mercury at: http://groups.yahoo.com/group/Autism-Mercury/. This particular group discusses issues as they relate to vaccinations and what you can do (i.e., chelation) to help your child. For more information on these topics: enzymes, mercury, etc., please see my sections on: New Things In The Treatment Of The Autistic and Parent Nuggets©. Chelation is a process whereby heavy metals (such as mercury, aluminum and other substances found in vaccinations) are extracted from the body. I caution parents in that chelation is a serious issue and should only be undertaken under the care of a physician. Many parents report great results through chelation, however, if not done properly and under the care of an informed physician, a physician who understands the issues behind chelation and who has assisted many parents in this process, then there can be serious consequences, including liver and kidney damage. Parents on the autism and mercury discussion board are more than willing to help other parents interested in this procedure to find doctors who are knowledgeable in this very serious but potentially very beneficial procedure. I personally, have not done any chelation. This is something still "on radar" for me in terms of "another option" to consider if I find Zachary's progress has "stalled out". For now, however, that is not the case, and as such, chelation is not something I anticipate doing - at least not in the very near future.
I caution all parents that Internet information is not always accurate, therefore, please do your homework and research these issues for yourself before doing anything... and consult your family physician as well - this is particularly important for anyone considering chelation!
Chelation, a process whereby heavy metals are removed from the body, should never be done on someone who has silver/mercury filings... that could make things worse than they already are by actually pulling mercury out of the fillings and into the system!
Chelation should always be done under the care of a doctor knowledgeable in chelation issues since chelation can result in serious liver and kidney damage if not done properly. Parents going through chelation can provide valuable insight, but, again, do your homework... only you can be responsible for your child's care!
Finally, I do 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, lies in helping the autistic child to "break the code©". Once the child understands how the parts of each situation/object - the parts of everything - fit together to form a whole, then frustration will 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 relate 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 is also the belief by many that mercury from vaccination somehow impacts these senses in a very negative way, perhaps affixing itself to key nerves and as such, causing neural damage in the areas of sight, hearing and touch. I, personally, am not knowledgeable enough in this area to really address it. Do I suspect that this is a possibility based on what I do know? Absolutely!
Again, in my own son, many "sensory type" issues did seem to improve 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 possible "truly sensory" issues due to casein and gluten, and/or vaccination injury, may also be simply another coping mechanism. The autistic child is used to "certain sounds" and when "unexpected sounds" are introduced, in my opinion, the autistic child simply can not make sense of them... I believe they are perceived as a "new part" to the "whole"... a new part the child is unable to make sense of. Thus, hitting of the ears or covering of the ears can simply be a coping mechanism as the child attempts to "block out" the offending "unexpected and 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 can provide of this has 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 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" also. :o)
I had noticed a variation of this in my nephew, Andrew, as well. At 11 years of age, Andrew was quite verbal. Yet, if he was confused as he spoke and felt he had not said something "just the right way", the exact way he wanted to say it, just prior to "starting over" in terms of making his point or telling his story, Andrew made a motion to cover his ears. Again, it was "as if" what he had heard, even coming from himself, had been "wrong" and as such was somehow "offensive" to him and so, to "block it out" or "do away with what had been said in the wrong way", Andrew simply covered his ears. When he was now ready to "start over" and re-express what he had been trying to say, his hands "came down" and no longer covered his ears. I was, therefore, convinced that "content" of what was heard also played a role in explaining why the autistic covered their ears!
In my view, as with auditory issues, I believe there may be several things at play when it comes to issues with sight. In the most severe cases, autistic children actually attempt to gauge out their eyes. :o( In my opinion, there can definitely be specific sensory issues due to the natural opiate effects of casein and gluten and/or vaccine injury on the brain... issues as they relate to certain light intensities, for example. However, it is also my opinion that those situations that involve the autistic child's inability to cope with partiality, where what the child actually sees, the "parts to the whole" that are not understood, create for the child such intense frustration that the child simply tries to hurt his eyes in order not to have to deal with partialities.
Truly, I am of the opinion that given what we do know about casein, gluten, phenols and vaccinations, one of the critical functions that appears to be impacted by these things undoubtedly that of "partiality processing" and how the brain fails to see the whole without first understanding all the parts that make up the whole. In a normal person, this "integration of parts and the whole" is pretty well automatic... in the autistic child, it is my opinion, that for reasons mentioned above, this ability has been severely, if not completely impaired and as such, in everything, the child must painstakingly consciously put "everything back together" and his failure to do so results 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 relates to the inability to cope with issues of partiality lies in the use of key coping mechanisms to help the child "break the code©" to his world - accomplishing this via the use of labels, fractions, words of quantity, etc. These may indeed be 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!
Breaking Eye Contact With People And/Or Objects
Another very characteristic aspect of the autistic child is that of not maintaining eye contact. In my opinion, breaking eye contact is also, in my opinion, frequently but another coping mechanism used by autistic children. This is definitely one where there is "more to it than meets the eye"! It took me a very long time to finally figure this one out! Breaking eye contact is clearly not simply a sensory issue... an issue of the eyes "not working properly". I am absolutely convinced of that!
What follows is the text from my section on "Breaking Eye Contact" as discussed earlier. This one is so important, that I chose to duplicate this short section and include it here, under "Coping Mechanisms as well". Persons who have already read that section can simply skip over it if they choose to do so.
Breaking Eye Contact ...
There Is More There... Than Meets The Eye!!!
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
When it comes to eye contact in the autistic child, many a parent will attest to the fact that maintaining eye contact with an autistic child is a difficult task indeed.
Autistic children have issues with vision and many seem 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 seem comfortable with a brand called Nordic Naturals, http://www.nordicnaturals.com/consumer/products_codliver.html, but, again, do your homework... and check each time you buy a product as they can change over time.
Zachary recently experienced such a negative reaction to cod liver oil that I will NEVER again give him any cod liver oil. 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. I encourage all parents to read my section on our personal experience with Cod Liver Oil and to be aware of what I believe is a very real issue for children with autism.
The vitamin A in cod liver oil helps remove issues with "sideways glances" while enzymes seem to help many many children, including Zachary, give better eye contact.
As with so many other issues with "the senses", however, I truly believe that in terms of breaking eye contact, there is, indeed, much more here than meets the eye!
What continued to puzzle me for a very long time was the fact that even with things to physically help restore the eyes, the cod liver oil and the enzymes, I still felt Zachary had great difficulty maintaining eye contact. I had not addressed any issues there may have been with mercury as a result of possible vaccine injury. Zachary had made some progress on enzymes and cod liver oil, but then, he always seemed to "slip back" somewhat and I just did not understand why that was - for a very long time!
I knew the issue was not that he could not physically look at me. There were plenty of glances into each others eyes that I had so cherished in the past. 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 the 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, I came to see, 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... again, it all made perfect sense.
For example, the act itself of looking someone in the eyes involves "looking at 2 eyes"... that in itself, in my opinion, was difficult for the autistic child since he could not deal with "partials" ... and the 2 eyes are simply 2 parts of the face... that in itself was enough to make him want to break eye contact. But, the "part" that we had all missed for so long when it came to eye contact was the fact that breaking it... with anything... was also a coping mechanism for the autistic child.
In my view, the autistic child breaks contact with anything that is "partial" and hence, offending to him... be that his mother's eyes or a book we would like him to read. Not able to deal with the "pages"... the "parts of the whole book", the child simply chooses to - "look away" - to not to focus on a particular page, but rather, often choose simply to turn all the pages quickly, shut the book and try to run away!
Look At Me!!!
Why "Looking Through You" Is Simply Another Coping Mechanism...
This issue with the inability to properly process partiality also explains why the autistic child always seems to be "looking through you" rather than "at you". If you think about it, a person in the child's environment is but a "part" to the "whole" ... if the child is unable to integrate "that part", "the person", then, that person is "not seen". This, combined with the desire to break eye contact because "2 eyes" - "two parts to a whole" (creating a stressful situation for the autistic child) indeed make for a difficult task when it comes to making a child "look at you". Just as the "child" needs to have "his label", so too, do I believe labeling "the part" as "mommy" or "daddy" or "a friend" would greatly help the child in this area of "looking through you".
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 adjust to light as it moved. In addition, the very act of "seeing" involves motion. Your eyes are not "blank stares" as they observe objects... rather, they are constantly in motion. In a normal person, to do what an autistic child does in terms of "blank stares" was, in my opinion, 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!
So herein lies what I believe is the critical issue with eye contact - the fact that the autistic child uses "breaking eye contact" as an actual coping mechanism in order not to have to deal with what is perceived as "stressful" - if you do not physically see the "parts" you can not make sense of, then as the saying goes: "out of sight, out of mind"... and stress levels are thus, in my opinion, greatly reduced for the child. Eye contact - something so critical in teaching, yet so difficult for the autistic child!
So, what is the answer to this one? Not surprisingly, again, I believe labeling is key in helping with overall issues of breaking eye contact as this relates to "avoiding eye contact" as the autistic child's coping strategy.
I personally have recently spent more time with Zachary on this specific issue. I decided to label everything for him when it comes 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 am hoping that this will also help with his issues with eye contact in general... that he will come to understand that he needs both eyes for a reason... to see everything. :o)
The autistic child, in my opinion, needs to be a visual learner when the visuals "do not offend", but perhaps needs to be an auditory learner as well, in instances where the visuals are 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 needs to focus on to learn? The key may lie in drawing attention to the "ordered" parts... perhaps the numbers on the page - the child may then be able to proceed more easily. Counting is a coping mechanism the autistic child generally loves... thus, it may be that simply drawing attention to page numbers showing the pages "as parts to the whole book" will suffice.
Perhaps we need books that are 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 would have something like this:
1 2 3 4 5 6 7 8 9 10
with the more of a "whole" provided by counting, and yet the page number 4 being showed more brightly to show "this" is the current page and that we have more to go. I tend to think such things would help.
I encourage 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 to share with all parents via my website.
I truly believe parents hold within them observations and techniques, perhaps even unknowingly, that are surely key to further removing the shackles of autism. Perhaps as more parents come to understand autism in terms of the inability to properly process the whole without first understanding the parts, that many more "tricks to the trade" will be uncovered by parents in order that, together, we may help as many children as possible with so many of these issues. :o)
This is one area where I do think that behavior therapy may be necessary provided the therapist understands these issues with partiality! Simply teaching eye contact with a person will not do it... you have to teach eye contact with "things" too... books, papers, blackboards, objects of any kind necessary in teaching.
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
Just as breaking eye contact is a coping mechanism for the autistic child, in some cases, so is 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.
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, in my opinion, was but another coping mechanism used by Zachary.
This would explain why pretty well all autistic children always seem to be "running off" as parents chase 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 could climb on the couch from one end, walk across to the other end and then get off... or continue 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 would he "get off in the middle" of the piece of furniture. 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 believe 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, in my opinion, was truly not an issue of hyperactivity! The label of "hyperactivity" simply had too many "implications" associated with it for me to use this term to describe this particular coping mechanism which I believe is often mistaken for hyperactivity! I do encourage 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 relate to "The Plastic Eggs!" Note: I first wrote this section just after writing my book... at the time I wrote my book, I knew order was a key factor for these kids... it is 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 the inability to process the parts to the whole. When you read through this exercise, you can now clearly see that order plays a role, but more specifically, that the issue lies in the inability to deal with "partiality. Physical Removal Of Self From Stressful Area/Item/Situation - The Plastic Eggs.
Hyperactivity may be an issue for some autistic children (i.e., children who may eat too much sugar, not have enough magnesium, etc.) but, in all honesty, I do not believe it is as pervasive an issue as many currently believe and that the issue is more one of the autistic child in motion and his use of motion as a coping mechanism. This would certainly explain the constant running away we see in these children, the constant jumping, and the apparent inability to be able to sit down long enough to learn anything - as it would also explain why so many children are still "hyper" in spite of being given medications, magnesium, epsom salt baths/creams, and other supplements known to help with "hyperactivity".
Thus, again, in my opinion, the key to truly decreasing "hyperactivity" - which in reality, is probably simply the "child in motion issue" rests in removing areas of frustration in the child's life/ environment by helping him to understand those things that, to him, just do not make sense. If the child does not understand the parts to the whole for teaching materials being placed before him, there is no doubt in my mind that he will continue to "run away" in order to cope with the frustration resulting from what is being put before him.
The final thing I want to mention as it relates to "hyperactivity" is that, often, it can truly be a physical issue for many reasons. These include lack of magnesium as well as issues with parasites (i.e., worms). Parasites are a serious issue for all family members and I encourage all parents to become informed in this area as well, for this too can 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)
The fact that the autistic child uses "physical removal" of himself as a coping mechanism is also clearly evident in many other behaviors we so often see 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, in my opinion, takes many forms in the autistic child. It is seen in their "blank stares" as they mentally remove their glance from something they can not deal with and simply choose to "ignore it" by looking through it. It is seen in the "deaf child" syndrome as the child chooses to "remove himself" by physically "not hearing" certain sounds. For obvious reasons, this selective hearing and selective sight we so often see in the autistic has serious implications when it comes to the whole issue of safety for these children and as such, it can literally be a matter of life and death to ensure that everything is "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 - would always engage in an almost ritualistic familiarization process. What follows is 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" as a few months later, I came to see that the issue truly lay in a subset of the "ordering function", specifically, how the autistic child processes 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 indicates 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 are, a coping mechanism used by the autistic child as he tries to figure out his world, I now believe 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" that "these are pencils", "these are puzzle pieces", for example, he still tried to stack and align objects for a long time. This behavior still shows up somewhat when he is very tired, but it is so minimal now as compared to before that it truly no longer bothers me that much and I fully expect that as Zachary learns more about his world, that this behavior will completely disappear. Perhaps his issues with still needing to stack and align objects results from the fact that I was not "specific enough" in my labeling... perhaps each color had to be labeled (especially given the important role I suspect colors play in the life of the autistic child - see section on Colors), perhaps each puzzle piece should have been labeled with a "specifically assigned number"... I suspect 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 suspect 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. :o)
Creating New Entities To Be Able To "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 which caused him stress. The best example I can provide of this is that of his "fraction truck" in my section on "Fractions".
The following excerp from my section on Fractions illustrates how the autistic child "creates 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 "FractionStax Truck". He decided to create "a whole" with the "parts" before him... yet, another coping mechanism... only this one has a double-edged sword!
The creation of the "FractionStax Truck" allowed Zachary to cope with "the in between", the "partial", because, now the object before him was no longer a "FractionStax" with missing pieces that caused so much frustration, the object BECAME a FractionStax TRUCK... It was no longer its previous "self" and had been replaced by a "NEW ENTITY".
This object was now labeled by Zachary as his "FractionStax Truck and Trailer". Since trucks and trailers vary 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... and so, even fraction pieces were ok.
Zachary now saw the "FractionStax" not as the tool it was intended to be but as a whole 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 has been replaced by something Zachary could better cope with... an 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 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 "FractionStax 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 the autistic child because repetition was needed with so many things in learning... yet, his coping mechanisms prevented that repetition from occurring.
This has been a very difficult issue to overcome with Zachary - and I suspect it is with all autistic children. This would certainly explain why behavior therapy can be so difficult with these children.
In addition, the "new truck" had now taken over and now, it too had to go through the ritualistic familiarization process. If the truck was not perfectly aligned or "just right", then frustration erupted once again. Now, there can be no truck without a trailer... the wheels had to be able to sustain the whole, with no pieces falling off as that would become a source of frustration. This was indeed a vicious cycle. I had spent $25.00 spent on a tool has been turned into something I now had to find new ways of using to explain the same concept... or my tool became completely useless!
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 believe, the reason it was so so difficult to teach these children. You constantly had to be looking for new ways to teach the same concept using tools that now no longer had the original, intended meaning. Yet, to teach so much in life necessitated some repetition... this became an overwhelmingly difficult and exhausting task!
Creating One's Own "Code" To Life...
The Possible Danger of Inaccurate or Incomplete "Reference Communication"...
I suspect autistic children also generate their own "code to life" in order to better cope with those things they do not understand. This issue is 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. Basically, my theory here is that when the autistic child is unable to "break the code" to deal with the world about him, he simply "invents" or "makes up" his own code for dealing with life and categorizing everything. Color and Language are such huge sections that I will not duplicate them here but rather ask that readers go to these sections to understand this concept.
There are 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 creates "his own code to life", there may be no perceived need to understand or "decode" the "real code" to truly understanding the world about him, thereby allowing the child to slip further into the grasps and shackles of autism.
In terms of "reference communication", there are also, in my opinion, matters related to safety in that if a "new code" is created and that "code" is expected to be used for future reference, if that code is "not completely accurate" in terms of the "appropriate response", then the consequences, in my opinion, can be devastating - in some cases, undoubtedly even leading to the death of a child who has "memorized" perhaps only one "reference" , such as "walk or don't walk signs being necessary to determine whether or not it is safe to cross a street"... and as such, if no "walk" or "don't walk" sign exists, the "reference" to draw from is incomplete, and hence, may allow the child to proceed unknowingly into a very dangerous situation! As such, multiple "appropriate responses" need to be taught to these children when it comes to safety issues.
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 would also physically remove or scatter pieces so that they simply could no longer be perceived as somehow "belonging together". For more on this, see the section on: Exercises I Do At Home: Randomness - as shown with use of fractions, Randomness - as shown with use of plastic eggs, Randomness - as shown with use wooden blocks. Again, these are huge sections and as such, I chose not to duplicate them here but simply to refer readers to the appropriate place to learn more on yet another important coping mechanism in the autistic child.
Ordering Language, firstname.lastname@example.org, and Reference Communication...
What some used to refer to as "nonsense language", I choose to refer to as "ordering language" and I encourage all parents to refer to this behavior as "ordering language" from now on... because, in my opinion, that is truly what it is! It makes perfect sense once you see it from the child's perspective... it isn't "nonsense" at all!
Ordering language, as described in the section on Language, in my view, is 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) serve basically the equivalent of a child "talking to himself" to understand and cope with life. I see both of these as absolutely critical coping mechanisms that should not be broken in any way, especially given that these relate to the "real world" as it is 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, in my opinion, further slip the child into the grasps of autism).
In my view, echolalia is the coping mechanism whereby the autistic child tries to decode what he is hearing "right now". Ordering language, on the other hand, is a coping mechanism used to help "sort" those things recently learned or still in the process of being "decoded" but not pertaining to the current situation. In addition, when the child becomes frustrated, "ordering language" itself can be used as a coping mechanism. For example, when Zachary used to be very frustrated at first, before I figured so much of this out... 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 have 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. 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 didn't always appreciate my doing this. :o) At first, when Zachary was just beginning to identify his own 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 the child can 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 "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 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 learns to cope and to understand his environment more and more, this ordering language will greatly be reduce, and eventually, will most likely disappear altogether. :o) But again, the key to reducing and/or eliminating ordering language lies 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 "come out"... I encourage 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 provide productive coping mechanisms in that they help the child to break the code©!
Counting And The Use Of Math Equations...
Pretty well every parent of an autistic child who speaks has a child that can count. Autistic children quickly grasp the concept of counting... because it is one of order... each number is followed by a specific number, and that never changes. As such, counting is something parents can use to their advantage in helping to provide coping mechanisms for their children. Counting is an excellent way to bring order to what may appear as a random process to the autistic child. Counting allows the child to anticipate "what comes next"... to focus on the next "number"... the next "thing". It works with countless situations. In my opinion, this function is key in teaching processes, social interactions, safety issues, and much much more in the autistic child. I encourage all parents to think of "counting" when things get difficult and a child is stressed out. The old saying of "count to 10" when you are upset is actually one of the best things you can teach your 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 to illustrate how to use counting to your advantage! Counting is a coping mechanism both the parent and the child can use in a productive way!
In addition, other math "equations", such as the use of "equals to" or "not equal to" can 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've 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 look at these "words", they give the autistic child a particularly effective way of dealing with something he does not understand... the "part" of the whole is simply referred to as something "broken" or "stuck" on the whole until it can further be explained later. 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'd 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'd say things like: "it's stuck". Again, that helped him cope with the fact that something which did not belong "was there" and that could better help 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 are just simple examples of words I used that I found very helpful to Zachary... parents can use them 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... helping to see completion of one task and helping Zachary anticipate the fact that it was time for the next.
Words like: "it's stuck" or "it's broken" were a tremendous help to Zachary. Given his inability to cope with partiality in anything until parts were labeled and made entities in and of themselves, I could certainly understand, why these two short phrases, in particular, were among Zachary's favorite in helping him cope with stressful situations.
Also - again - helping him to "understand the problem" was also 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., in attempts 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 suspect, this also helped explain why some kids coped better than others - again, it was all in the labeling and the use of the "right words". :o)
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 begin and end. As such, I believe this was the reason songs and/or music seemed to work so well in teaching some autistic children and why for the autistic, music may be even "more relaxing" than it was for a normal child. Music, in an of itself provided a coping mechanism too... something that provided completeness as it flowed from beginning to end!
If there is one productive coping mechanism in all this... it is labeling. By tagging names to everything, the autistic child comes to see that everything in and of itself is "an entity". Even a fraction can be an entity in and of itself even though a fraction is also a part to a whole. For example, if you label a fraction, such as 1/2, even that assumes an identity of its own... it becomes a "whole" concept in and of itself. As such, it is my opinion that teaching fractions as early as possible is 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 think about it, if partiality is 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, should not be a concern for parents since the only thing the child really needs to understand is the fact that the whole can be "broken into parts" and that "parts" fit together to form a whole... and that "those parts" have a name too! Once the child understands that everything has a "label", he can more readily ask: "what's that" to get the labels he needs 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 label something, even if that something is a "partial", for example, 1/2 - this is a fraction... a part of a whole, but by showing the child that 1/2 means something in and of itself, that "partial" takes on an entity of its own and is recognize 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 would provide 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'd 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 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'd 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 helped to make all the difference!
With a process, such as "brushing teeth" or "cutting hair", I found that Zachary could easily tolerate 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 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" has a "whole" entity in and of itself when you label it (i.e., 1/3.... this partial is 1/3... 1/3 represents 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'd just have to 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 hears a loud car, he himself will say: "broken muffler"... and he's ok with the loud sound. I do believe there are times, however, when his ears actually "hurt" from the noise. Auditory issues are among those I hope to further address this year.
A simple way to help with auditory issues was simply to buy Zachary a pair of "shopping ear muffs". We kept these in the car, and wherever we went, we simply 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. In no time, he would choose to take them off himself in specific locations but to keep them on in others.
This simple thing - labeling everything - was an absolutely HUGE help for Zachary!
Zachary soon learned to actually "create" his own labels too! 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", 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" 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 do not really grow on heads... that they just grow in dirt or sand. Given my concerns with "pretend play" and the autistic child - a section I hope all parents will read - 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, make 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 can be used in "labeling" everything for the autistic child.
Labeling - via the use of fractions, words to teach quantity and words to cope - is in my opinion, the most powerful tool parents have in helping them recover their autistic children! :o)
Obviously, of those coping mechanisms listed above, several can 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., are productive ways of helping the autistic child cope... and as he comes to better cope with everyday life, I suspect those coping mechanisms that are much more negative (such as self injurious behavior, biting, "the child in motion", spinning, etc.) will slowly be eliminated from the child's repertoire of coping skills.
The above are a listing of coping mechanism I myself have come to recognize in my own son, Zachary. There are perhaps countless others that have yet to be identified!