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CHAPTER 16
The Revelation...ORDER! ORDER! ORDER!
I had actually completed the initial editing of my book on paper on November 28th, 2001. That night, I went to bed, thinking that on the following day, the 29th, I was going to input all my changes into the computer and basically consider my book completed. Little did I know that the best was yet to come!
Prior to going to bed that night, I said my prayers as I always do. This time, I asked God to “make sure I included everything I needed to include in this book, because I would only have one chance to tell Zachary’s story”. At 2:00 a.m., that same night, God gave me the answer to the puzzle...bits and pieces of it had been there all along, throughout my book, everywhere in Zachary’s behavior, but I had been unable to put it all together until just then. I had not recognized how the pieces were all part of the whole...the underlying problem.
It had always bothered me that almost every book I had read on autism stated that a routine was critical for these children. I wondered how my experience could have been so different than that of so many others. With all of our trips, our moves, etc., life had been much less than “routine” for Zachary and he strived on seeing new things. New stores were never stressful in and of themselves. Visits to see relatives were never stressful in and of themselves. A new home had been adjusted to literally overnight. What was I missing? At 2:00 a.m. that morning, God gave me the answer!
What had always caused Zachary stress and frustration was a lack of order – that was different from a lack of “routine”. It hit me like a ton of bricks. It now all made sense to me – and so, with my new “last minute” insight, came my need to write yet another chapter...The Revelation!
So many of Zachary’s behaviors and frustrations could be attributed in some way to the need for order. I was sure it was this part of the brain that was being so impacted in autistic children. From my readings, autistic children were consistently strong or weak in similar areas. The things Zachary always did well with were not those things that were part of a routine (he had none), but those that had order!
It explained why he mastered the alphabet so quickly....each letter was followed by another, specific letter... there was order!
It explained why he had mastered phonics so quickly...each letter made a specific sound. Each letter or letter combination always had the same sound...there was order!
It explained why he had learned to read so easily...it was simply a matter of putting the sounds all together and saying them... as long as he knew the sound, Zachary could read the word.... there was order!
It explained why Zachary could easily pick out words that started with a specific letter while playing his educational games on the computer....there was order there!.....but, it also explained why he had difficulty picking out words that either ended with a specific letter or had a specific letter in the middle....that would not have “order” to it since you read from left to right! To him, the order was gone!
It explained why he loved to count and by the age of four could easily count to 100...each number was followed by a specific number...there was order! It explained why I had had difficulty showing him how to count by twos, fives and tens...the order was not as obvious to him...he was still young, but I was sure once he saw the order, that would come quickly too!
It explained why Zachary loved shapes....they never changed...they were always the same...a hexagon always had six sides, a triangle always had three....Zachary had easily mastered all his shapes, including star, heart, circle, triangle, square, rectangle, oval, pentagon, hexagon, octagon, trapezoid....each was a constant that never changed... there was order there!
It explained why Zachary had a difficult time learning colors...these were a little more abstract...there were variations within one color... sky blue, navy blue, royal blue, turquoise...this was a little more difficult to grasp...the order was not as obvious or perfect as it had been for so many other things!
It explained why Zachary had no problem learning a whole slew of opposites...up always went with down, black with white, on with off, over with under, forward with backward, go with stop, big with small, and so on...one always went with the same opposite...there was order there!
It explained why the concept of seasons had been so easily grasped, spring was followed by summer, which was followed by fall, which was followed by winter and so on...there was order there!
It explained why he had mastered the days of the week in a matter of minutes... each day had a specific name and was followed by another, specific day...it never changed... there was order there!
It explained why he had mastered the months of the year in just two hours...each month had a specific name and was followed by another, specific month...it never changed...there was order there!
It explained why the concept of birthday was also easily learned...the date was always the same...there was order there!
It explained why the concept of name was also easily learned...it was always the same...each person had a name that never changed... there was order there!
It explained why Zachary could answer any question that had to do with labeling objects. Each object had a specific name and that never changed...there was order there!
It explained why he enjoyed puzzles...and why he got so upset if I put a red circle where the blue circle should go, or yellow square where the purple square should go...there had to be order there!
It explained why he learned songs so quickly... each word in a song was followed by a specific word...there was order there!
It explained why Zachary talked in “commands”...certain words always went together...things like “open the door” or “I want ____” always produced a specific outcome...there was order there!
It explained why Zachary had said to his grandfather, “see you later”... and then he added out of nowhere... “come back soon”...those two phrases together were part of a logoff procedure for one of his computer games...to him they went together...there was order there!
It explained why when Zachary pretended to be on the phone, he simply said, “hello... goodbye” but nothing in between...he was imitating one of his “opposites” video...those two things always went together...there was order there!
It explained why Zachary tried to put the chunks of snow back on the snow bank...where they belonged...there was order there!
It explained why Zachary pulled the tops off flowers and then made a pile of “flowers” and a pile of “stems”...there was order there!
It explained why Zachary aligned pencils tips at one end, bottoms at the other...why he aligned, stacked and grouped just about everything that was similar in shape, size and function ...there was order there!
It explained why brushing his teeth or cutting his hair was ok as long as I counted out loud while I did it...it brought order to a process!
It explained why rewinding a movie and seeing it go “backwards” on the television frustrated him...it went against normal order of going forward!
It explained why the credits after a movie were more interesting than the movie itself... they consisted of orderly text that went from the bottom to top of the screen, in a constant order...the movie had no order and thus, was of no interest. If he had seen a movie at least once, then it was more enjoyable. He could anticipate the outcome... there was order there!
It explained why any change in direction, left, right, backward, sideways, (in a car, on a walk, in a store, etc.) was so frustrating to Zachary...it went against normal “forward” order.
It explained why my son would have surely drowned at the end of the dock as he faced away from shore had his father not seen him in time... there could be no “going back” to shore...normal order meant going forward.
It explained Zachary’s campfire dances and his constant need to go in one direction or the other... there was order there!
It explained why rides at the fair were more interesting than animals...animals ran around randomly, whereas the rides went in a constant, specific pattern...there was order there! It explained why Zachary could not see the elephant for the squirrel twirling a nut three feet in front of us at the zoo...he was literally captivated by the twirling motion...there was order there!
It explained why Zachary always liked to wear the same type of clothing... sweatpants and a shirt... there was order there!
It explained why Zachary had such a hard time with the concept of same or different... he did not know what to make of the “different object”...there was a lack of order there!
It explained why Zachary had difficulty with conversation... for the most part, conversation was random, except for communication via labeling things or the giving of commands... these forms of communication had order as opposed to actual conversation which did not...conversation lacked order!
It explained why Zachary loved to spin objects...spinning caused something to move in a predictable direction, one way or the other...there was order there!
It explained why, when frustrated, if Zachary could not find something to spin, he reverted to “pretending” to be spinning with a finger or to some object that provided order and as such, it explained non-sense language...his walking around the house saying words that appeared to be totally out of context...such as “green truck”, “circle, square, triangle”...the reciting of all shapes, the alphabet with associated words for each letter, etc., prior to going to bed...there was order there! Zachary used to go around the house and say, “circle, triangle, square” , or “circle, circle, circle, etc...”, or “green truck” (had wheels and he loved to spin wheels... but also something concrete that “made sense” ), or “fan”, or “carousel”, ...they were all things that I had perceived as “non-sense language”, something so characteristic of autistic children, yet, now that I understood Zachary’s need for order, I understood this too...to him, these were not “non-sense” words, these were things that in his world....had order. Whenever he used these “non-sense” words, I now knew that he was giving himself an “order fix” as I came to call it. He did this when he was stressed out, or simply after a period of time when we had been watching a movie or doing something else that had basically no order to it.
It explained the echolia... the constant repetition of words in an effort to bring about some type of order.
It explained why Zachary’s de-stressers were usually things that spun, ceiling fans, his carousel, etc....they went “one way” or “the other”... there was order there!
It explained why Zachary physically had to remove himself from situations that had no order to reduce his frustration level...and why he often positioned himself in a way that his “line of sight” could not see the “disorder” all about...there had to be order!
It explained why certain social skills were easier to learn than others...dirty dishes went in the sink, banana peels in the trash...there was order there!
It explained why Zachary had to put the “clean clothes together with the dirty clothes”...they belonged together...it explained why the piles of clean, folded laundry were all thrown on the floor, together… not in these funny little stacks that mom had made...he, not I, had brought order to the laundry...his pile had created order!
It explained why Zachary pulled all the labels off my food cans, the stickers off my appliances, a bandage off a wound on his finger, the plastic caps off my metal door stoppers, and so many more such behaviors...these things “did not belong”, they were not part of the “normal” order!
It explained why Zachary never “mixed” objects such as rocks and acorns. You could have one or the other in a pocket, not both...that would have lacked order!
It explained why “turning pages” on computer “book programs” was more fun than “reading the book”...turning pages had an order to it...pages in and of themselves did not...they lacked order!
It explained why, one night, as I laid next to Zachary in bed he went into what seemed like “neural overdrive”, as I had described it to Fred. Zachary was on his back, and before he could settle down for the night, it was as though he “had to order” his world before going to sleep. It was when learning phonics and how to read words – he went through the alphabet, “A is for apple, B is for bed and so on...all the way through the letter Z” and then he started over using new words for each letter. It was as though he was “ordering” his world – an activity that usually happened as we slept – but he was performing this function while still awake. He could not calm down for the night until this had been done. Upon seeing Zachary do this, I had commented to Fred that Zachary indeed seemed to be “ordering” his world before going to sleep and I had added that, “it was the wierdest thing I had ever seen”.
It explained why social breakthroughs were those that had “order”. For example, when Zachary acknowledged the “1,2,3 lady” at the park who called out numbers as she pushed her child in the swing, it was because she had brought “order” by counting.
It explained why certain social situations were less difficult than others...the family was a “familiar” environment and interaction with family members was usually preferred to a strange social situation that lacked any order. It was easier to play with a predictable sibling than an unknown child at the park. Familiarity with family members brought predictability to situations whereas there existed no “stored reference” or base knowledge/ “ordering system” for an unknown child or social situation. The order of family dynamics was more predictable and thus more “orderly”.
It explained why some “pretend” behaviors came more easily than others. For example, Zachary could easily meow like a cat, but he did not like anything out of order, such as hearing me bark while pretending to be a butterfly...that brought out his frustration...that lacked order!
It explained why Zachary had such a difficult time with potty training...that was more or less a “random” thing...it lacked order! Perhaps I could now “train” Zachary with the help of an alarm clock, showing him to “go to the bathroom at specific times”.
It explained why Zachary had to go through a ritualistic familiarization process with everything that was new and involved “grouping”... he had to “create order” before he could use new tools for what they were meant to be...tools...not things you “ordered”.
It explained why routines seemed to “work” for these children – that brought a sense of order to situations where none may have existed previously. Routines created a “point of reference” or “databank” to draw from in the future. It brought “forced order” to specific tasks. Routines were actually reinforcing “order” and thus, perhaps doing just the opposite of what was necessary... to break the need for order.
I was convinced that breaking the intense need for order was key! I had already accidentally fallen upon this with a few things we already did... the non-sense color game (i.e., pink horse, purple cat, etc.), our activities at the park when walking forward, walking backward, walking sideways, etc. With Zachary, I was finally starting to see the need for constant order subside. He no longer had to align all his coloring pencils tip-to-tip and bottom-to-bottom. He no longer had to put the red pen cap cover on the red pen...it was ok to put it on the blue pen. It had been a good thing to let him pick dandelions for over an hour...to come to the conclusion by himself that you could never “complete the task”...as had been the case for the chunks of snow and the snow bank. He had realized by himself that nothing “bad” had happened when the task was not perfectly completed.
Although there could indeed be more at play in terms of actual senses, it could potentially also explain why new foods could at times be difficult to introduce...again, there was no “databank” to draw from, no “reference point” as to whether or not the food was good or bad and therefore, they were physically approached with caution.
Granted, there were many behaviors that “order” could not explain such as the impact on senses in general (sensitivity to light, sound, etc.), but the fact remained that the need for order did explain so much! I was certain the impact on actual senses could certainly be explained by the problem with casein and gluten and possibly phenols as well...and now, I knew exactly what part of the brain was also impacted by these things...that part of the brain that dealt with ordering. For concrete things grouping was more critical. For abstract things, it was less obvious in Zachary’s behavior...but it was there...that was how I came to see that a barking butterfly was “not acceptable”...it was not part of the “normal” order of things.
As I thought more about the whole issue of senses, a thought came to my mind. Could it be that it was not the “senses” themselves that were affected by casein, gluten and possibly phenols but rather that part of the brain that “ordered” sensory information. As I thought about this, I certainly did see it as a possibility. For example, I had once read that fluorescent lights really seemed to bother autistic children. Someone once told me that fluorescent lights “flicked 60 times or so per second” (I can not remember if that was the actual number of times, but that does not matter). Was Zachary trying to “order” that flicking of the fluorescent lights? I did not know, but it certainly was an interesting possibility. I had to leave that one up to scientific study!
I was excited about finding still new teaching methods for Zachary – methods that had to “break the inappropriate need for complete order”...and that meant, for most situations, breaking “routine”, something I saw as an artificial “order” , but an order none the less that just reinforced the child’s need for order...the very source of the problem!
I decided to spend the next two days testing my theory...that the need for complete order was the root of the frustration for so many of these children.
I had always been a very tidy person... now, I would leave the housework and let the house become a disaster area in order to see the impact on Zachary. I let the house go for the entire day...I did not pick up a single thing that Zachary or someone else had “misplaced”. The next morning, I got up and looked around. The house looked like a tornado had passed through it. I could not see any change in Zachary’s immediate stress level. I was more stressed out than he was. I told Fred that I could no longer take it and I started to clean the house.
I began in the bathroom just off the master bedroom. I looked at my counter. I always had the soap dispenser on the right, the fluoride and mouth rinse on the left. They were not exactly in their correct places...I adjusted them. As I did that, I thought, “these bottles could be flipped over on their side and Zachary would not come in here and put them in the correct position”.... he would not care about these. Hum!
Then I worked my way to the front entrance. The shoes and boots were all over the place. I started to order them. As I did that, I thought, “Hum, Zachary has never ordered the shoes and boots”. I wondered why.
I then turned to my living room... that was the worst area in the house. I began picking things up. Everything, it seemed had been thrown on the floor and left there as Zachary had gone through his toy bin. There were plastic Easter eggs, wooden blocks, the bows Anika had put on chairs to decorate for Christmas (Zachary had pulled them off the chairs), there were puzzle pieces, train tracks, pencils, crumpled window clings, flowers off the Christmas tree, there were trucks, and other one of a kind objects. As I began to pick them up, again, it hit me like a ton of bricks...I was literally picking up my puzzle pieces...there they were... in front of me... scattered about the floor.
Those things which caused Zachary frustration were not one of a kind items like stuffed animals or trucks, etc... the items that caused him frustration were primarily those that required grouping of some kind... they were similar in shape, texture, and function… parts of a group – parts of a whole!
One of a kind Christmas ornaments were still on the tree. The plastic flowers I had placed in the tree, however, had been taken off the tree and the flowers pulled from the stems. The puzzle pieces were similar objects that Zachary grouped. His pencils were similar objects that he grouped/aligned. The wooden blocks were similar in shape, texture and in function. The only window clings Zachary had removed, although of various sizes, were all window clings of snowflakes...they were all similar and thus should be grouped. Last year, all window clings had been removed (although they were all similarly flat and similar in function too). This year, Zachary had been more discriminating...only the snowflake window clings were crumpled on the floor. It all made sense. Boots and shoes were different enough in shape and size that they were not perceived as “similar” and thus Zachary never cared to “group them”. It had always been the same with one of a kind objects like stuffed animals...they were never similar enough that he perceived them as belonging together. Pencils, blocks, train tracks, snowflakes, puzzle pieces, Easter eggs, Christmas bows... all these things, however, were similar and therefore, had to be perfectly grouped for Zachary’s world to be in “order”.
I decided to test my theory. I put everything away except for the Easter eggs. The eggs consisted of two “shell” pieces and they were of various colors. At the moment, all the eggs were apart...only shells laid on the floor. I decided to sit down and start putting them together. Almost immediately, Zachary went into a fit. I would have thought the mixing of colors would have upset him (it has done so slightly in the past but the “newness” of color had disappeared), but that was not what triggered his frustration. He was upset to see whole eggs verses shell parts...he only wanted to have shell parts, no “whole eggs”. As I worked at putting the eggs together, his frustration grew more and more intense. He was now next to me, pulling the eggs apart. He got especially upset if I took the ones he had just pulled apart again, and put them back together. Seeing that he could not keep up to me, he quickly got up and started stepping on the eggs to pull them apart faster. He was very upset. I let him pull them all apart.
A few minutes later, I came back, and started over. Again, he was quite upset. Then, I made a game of it. When I had a “whole egg”, I started to blow it across the floor. He thought that was fun and so now, the exercise was not as upsetting to him. I only put some eggs “back together”, not all of them. I did not want to create “complete order”. After I blew a “whole egg” across the floor, Zachary would pick it up and put it in a small wicker basket. Then I tried to put some “egg shells” or “halves” in the basket as well. Again, that stressed him out totally. Only “whole eggs” could go in the basket. He now tried to assemble those eggs I had left “unassembled” in order to place them in the basket as “wholes” just like the others. I walked away and let him work at that a little. He could not put them all back together though...he took the basket of assembled eggs into the kitchen and played with them there, leaving the unassembled shells in the living room – out of sight...that was less upsetting to him.
When he left his basket in the kitchen to move to another activity, I took his basket of assembled eggs back into the living room. I took some shells and some “whole eggs” and mixed them up in the basket. I also left some of each on the floor. Again, Zachary came by and got very stressed out. He took all the eggs out of the basket, threw the basket on the floor and walked away. Once again, I put some whole eggs in the basket mixed with eggshells and left some of each on the floor also. Again, he came by and emptied the basket... again, I did it... over and over, until he gave up and left the eggs (whole and partial) in the basket as well as on the floor. For the rest of the day, he paid practically no attention to the eggs on the floor. After a while though, he assembled all of them again and put them in his basket. I figured he had had enough for the day and so I let him be.
I tested the “need for order” in other ways. I knew groupings were a problem for Zachary. I could now focus my energies and attack that specific problem. I suspected the need for order impacted him in other ways also. I pretended to be a duck. I started flapping my wings and saying, “Zachary, look, I’m a duck...quack...quack...quack...”. When I knew that he had seen me “as a duck”, I continued flapping my wings, only now, I began to bark. Again, almost immediately Zachary showed frustration. He started to “butt me” with his head and said, “broken dog”. As soon as I stopped the duck-dog thing, he was fine. Seeing he was a little frustrated, I decided it was time for a break. I laid down on the carpet in the living room. Zachary had no “de-stressers” around...nothing to spin. He therefore decided to make up an activity to give himself an “order fix” as I called it. While I laid on the floor, he went to my feet and started to walk on my legs...he started on my ankles, and worked his way toward my head. By the time he got to my chest area, I had pushed him off of me. At that time, I did not realize exactly what he was doing...I thought he just wanted to play. He went right back to my feet and started walking on me again... he insisted on going past my neck and head...almost to the point of breaking my glasses. When he got to my neck area, I had pulled him down. He fought with me to “get passed my head” and keep going in “that straight line” in order to complete the task. He put one knee on each side of my head and then went over my face and above my head. Now, he had completed a task that had some “order” to it in his mind and he was fine and went on with his activities. I decided break was over and I tried something else. I played the horse. Zachary was on my back in no time. I gave him a ride around the house, at first making the sound of a horse. I then continued with the horseback ride, only now, I was meowing like a cat.
Zachary enjoyed the ride, but there was still frustration there... as we moved around the house, he kept saying, “oh, dear... oh, dear... oh, dear...”. After I “faked death” to get him off, he started walking around the room, in no particular order, but now, he was talking to himself. He started saying things like, “a fan, a fan, a fan” and “a match...a fire...a candle”, “hat, mat...”...he was going through an “order fix” again... each time he got stressed out, he looked for some semblance of “order” to bring his world back to a “stress free environment”. I then took three long key chains that I could wrap around my neck... I had obtained these at the fair earlier in the summer. The key chains were very similar… there was one for “army”, one for “navy” and one for “Michigan National Guard”. My daughter had picked them all up at the fair for free because she thought they were so cool. The key chain holders fit around my neck like necklaces and went about down to my belly button. They varied in color but were similar in shape, size and function. I then added a smaller pink beaded necklace on a pink shoelace that my daughter had made for me when she was four years old. It was strikingly different from the other three objects around my neck. It looked very different, and hung at a different level on my chest. Upon seeing the “different” object/necklace, Zachary immediately made a motion to remove it. I said, “no” and he stopped. You could tell it still bothered him, but not tremendously. I went into the office to talk with Fred.
I was lying on my back on the bed in the office as I spoke with Fred. Zachary came in. He wanted up on the bed with me. My knees were bent and up in the air so that my feet were flat on the bed as I laid there on my back. Zachary perceived this as a lack of “order”, he started to push down on one of my knees to lay my leg flat on the bed. He then tried to do the same thing to the second leg. As he worked on the second knee, I put the first one back up. Again, he became very frustrated, his need for “order” mandated that I should have both legs flat on the bed. As I lay there I told Fred, “see, I can turn his frustration on and off like a switch now”... it was so true. The need for order was the huge source of frustration for Zachary. Now that I knew that, I could work on that area specifically. Life had just gotten 100% easier. I did not have all these “unknown causes” of frustration any more...I knew exactly how to set him off and on...just like a switch and I spent pretty well the entire day doing it as I started to address his issues. It was absolutely amazing... and the beautiful thing was, that it was so simple.
Knowing what the problem was made it easy to tackle. I could now control Zachary’s behavior completely. I spoke to my sister-in-law about all of this. I told her how “odd” I looked based on the fact that I had all these “wierd things on me” (three key chains around my neck along with my pink beaded necklaces, various color rubber bands around my watch, a hole in my pants at the leg...all things that did not belong). We joked how if someone came to the door that person would surely think, “what is with this woman...she is so “not together””. I wore the key chains and beaded necklace all day... and Zachary noticed...but, overall, he adjusted. When I made the comment as to breaking the order of what we had on, my sister-in-law made the comment that her son had once been very upset one time when she showed up in the kitchen with her bathrobe. She was usually dressed for the day when she got up for breakfast. Andrew had found that to be very stressful...to see the “order of appropriate clothing” broken...he was physically trying to push his mother back into her bedroom for her to change prior to breakfast.
I continued to test my theory of “order” throughout the day. I gave Zachary a wicker basket and a ton of stuff to put into it… here the order would be either “in or out”. I gave him so much stuff that he could barely fit it all in the basket. He would scrunch it down to make it fit, but usually, something fell out. I wanted to force him to have to leave something behind. Also, I would attempt to “take” something from his basket. As I did that, his hands went down tightly over it. I still managed to take something out, saying, “it’s ok, it’s ok.... I’ll give it back to you after I show daddy”. I then took the object and went over and pretended to show Fred something. Zachary was very stressed out over this. I brought the object back to Zachary...but, then, I took another one. This time I placed it on the refrigerator. That was again, very stressful and frustrating for him. Eventually, I gave it back. For the next hour or so, Zachary played with the basket and the objects I had given him. The more time went on, the more he could leave behind as he moved with his basket around the house.
That was another thing I had noticed... the frustration level and need to “group” were higher when the objects were new or the process or task was new. Once they had been around for a while, it was less frustrating to Zachary if I took one away...often, he felt no stress whatsoever. “Newness” of the object, process or task definitely played a role also. That explained why new coloring pencils had to be played with, touched, aligned, etc. for four days before I could even begin to show him how to “use them as pencils”. Zachary was going through his “ritualistic” order creation/familiarization process. I did further testing.
I went to work again with the Easter eggs...this time, I added coins, a small bank, and a jar, in addition to the wicker basket in which he kept his eggs the day before. I gave Zachary too many coins to fit in the bank. I had a jar of coins in my kitchen and had taken about two thirds of them out of the jar and dumped them onto the floor. At first they were pretty much in one area, but not mixed with the eggs (wholes or shells) that were on the floor. When I noticed that, I mixed the coins among the whole eggs and eggshells that were on the floor. Zachary had not been as stressed out about the fact that there were eggshells and whole eggs on the floor... he was getting “used” to that. Coins brought in a whole new aspect though. First, I let him fill up the bank...he put as many coins as he could in there. It was packed and he could barely add another coin, try as he may. I then sat next to him on the floor. I took several coins and slowly started putting them in an eggshell, then made a “whole egg”. Zachary went ballistic! He started to scream and cry and attempted to pull the “money eggs” apart. To say he was upset would be a serious understatement. As I did this (mixed the coins and eggs together in a whole egg), I said, “it’s ok, it’s ok, it’s ok” to ease his frustration. The more I did it though, the more his frustration surfaced. “It’s ok” was quickly becoming a coping mechanism for Zachary as I tested my theories. He started saying these words himself. Seeing how upset he was, I walked away to let him calm down. Later, I went back and started over.
I would constantly break the normal order of things Zachary had “rearranged” while I was gone. I mixed coins and eggs (whole and partial) together, filling some eggs with coins, taking coins out of his basket but not completely (where he would put them after the bank was full). The fact that I knew breaking order increased his frustration level made it all so easy now. I could literally “turn him on and off like a switch”. He got upset again as I sat down next to him and started over... putting the coins in the eggs had really upset him, again. He frantically tried to put the coins in the bank... but it was full. Each time he put some in the wicker basket, I dumped them out partially. I then took a “broken egg” and held it out in front of him to see if he would put coins in it by himself. As I did this, again, I said, “it’s ok, it’s ok”. He repeated, “it’s ok”, but he pushed my hand away, he refused to put the coins in the egg. I walked away for a few minutes, again, then came back and tried once more.
Zachary could no longer put the coins in the bank, I had put the jar away after taking a few more coins and saying it was “mommy’s milk money” (that upset him, but just a little since there were already some coins in the jar). Labeling it as “mommy’s milk money” helped to make it easier for him to cope. Coins were scattered all over the floor, intermixed with broken eggs and whole eggs. On his own, Zachary picked up one of the shell bottoms and put some coins in it. He then tried to close the other piece of the egg to make a “whole egg” with coins inside of it...a “money egg”. He actually did it. I praised and hugged him! It was now ok to have an egg with coins in it. He shook it to make noise and rolled it along the floor a little. But then, he laid down, his egg about a foot away, in front of him, and he admired it – taking in his “creation”. This was another small step forward. I was thrilled. He tried to spin the egg, I then said, “don’t spin”... he slowed down his spinning and stopped completely within less than a minute. He then experimented with trying to sit the egg up on one of its ends. That did not work, so he tried to spin it again. I let him spin a little. I knew it probably would not last very long. Sure enough, he stopped spinning again fairly soon and broke the egg open. The coins fell out. He started to put them back in. A task that had caused him so much frustration ten minutes earlier, he now did on his own. This was just too simple!
Understanding the need for order and the need to teach him how to break fanatical order made it so simple. I could work with Zachary between my tasks/activities...as he sat on the floor, learning to cope with his change in order, I could go along and do what I needed to do. Whenever I heard him say, “oh, dear...oh, dear...oh, dear...” or “it’s ok...it’s ok...it’s ok”, I would reinforce by saying “it’s ok” myself to help him ease the frustration. Zachary had had enough though. He put his forehead on the floor, and bunched himself up in a little ball. As soon as he did that, I picked him up, and told him again, “it’s ok, it’s ok”. Then I kissed and hugged him and told him he did a good job putting coins in the egg.
I put a video in the VCR – one with a storyline – a Winnie the Pooh video. It had not been re-wound. I re-wound it – letting the story flash “backwards” on the television screen. Of course, Zachary’s frustration came out again. I let the tape run backwards and as I did, I said, “it’s ok...going backwards”. I said that a few times. Then I said, “almost done”... that further helped him deal with the frustration. Finally, the tape was re-wound. That “training” had been completed.
Zachary started to watch the movie as I prepared his breakfast. I gave him a cup of rice milk with his calcium and magnesium supplements in it to help calm him down. Not a peep. He was now perfectly happy. Within ten minutes though, Zachary went back to the area on the floor where I had scattered the coins, eggs, bank and basket. I had secretly added the “coin jar that was partially filled” back as he had watched television. He noticed after a little while that the jar was there again. He now went over and started to put all the scattered coins in the jar. I let him do that. He also “cracked” the “money eggs” and put that money in the jar as well. I let him do that, since I wanted him to relax. Anika was up by then... she went over and put coins in the eggs again. Needless to say, Zachary got very upset with her. I wanted him to calm down so I asked Anika to leave him alone. Zachary picked up another whole egg from among the scattered eggs (whole and partial) on the floor. This particular egg did not have coins in it – he simply tossed it to the side, without breaking it!
He proceeded to put all the coins in the jar... then, he emptied the jar and scattered the coins with his hands. I took the jar, put some coins in it as I said, “this is mommy’s milk money” and, again, put that jar away. Zachary got up, picked up his basket and gave himself another “order fix”. He started turning himself round and round. I forced him to stop by holding on to his arms. He got so upset that I had interrupted his “order fix” that he bit me – he had only done that one before – a very, very long time ago! He got a small slap on the butt for that. I knew I was on track though. He threw himself on the floor. I hugged him and again said, “it’s ok, it’s ok”. He calmed down. As encouraged as I was with my results, it was still hard for me to see how frustrated and upset Zachary could get. As I hugged him, I realized that “as easy as this seemed to me”, that was most likely because I had had some basic training in behavior therapy. This was yet another double-edged sword.
I strongly felt I needed to crack open the books again and refresh my training in behavior therapy. I would not need an expensive program for Zachary. I knew I could do this on my own, but, I wanted to make sure I would not harm my son... and I saw how this could so easily be done if his “therapy” was not properly done.
If I was to assume the role of “therapist”, at home, I had to completely understand “my impact” as far as how Zachary was affected by this new approach. I knew I could “break” Zachary’s fanatical need for order – I just wanted to make sure I did it in a loving and lasting way and that, in the process, I was completely aware of exactly what I was doing and the impact that had on my son. I had to brush up on the basics of behavior therapy again – and focus on rewards – not punishments – to me, that was critical! Zachary was not an animal to be manipulated – he was my son and I wanted the best for him. I had never agreed with “punishment” in behavior modification. If it took me slightly longer to “get Zachary to accomplish a task”, then so be it - I would only push so much! Zachary had gone through so much in the last year and a half. Indeed, if things had been hard on the rest of the family members, Fred was right – I could not even begin to imagine how difficult all this had been for Zachary himself – living in constant frustration because no one “had understood”. But, now, I did understand, and I understood the source of his frustration. Knowing Zachary’s problem had to do with inability to “break order”, and with partialities, the “non-whole”, “the incomplete”. I knew I could now, at least focus my energies. I knew the enemy – and this was one battle, I was once again preparing to win – without further hurting Zachary in the process. Patience and understanding... patience and understanding... patience and understanding! That was what Zachary needed and that was what he would get! I was determined to stick to “positive reinforcers” and avoid “punishment” at all cost!
Now that I finally understood the source of Zachary’s frustration, my own stress level had gone down tremendously. I was better able to cope and deal with my son each day. It gave me new found energy. Zachary was always so willing to help, to please. Like all children, he was so precious!
I knew I could make this a good experience for both of us. Sure, there would be frustrations, but at least now, they would be much more controlled. I could remain in control of the situation and show Zachary that it was indeed “ok”, that we would learn to “break order” together!
I was lucky. I did not have to attack all order – only “inappropriate need for order” and specifically, “grouping” and “partialities”. That was the worse thing for Zachary. I would teach my son to deal with everyday frustrations, the “real world”. Zachary was fine with the “normal” order of things... a dog barked and both he and I were fine with that. I would make a game of enhancing his creativity though by using things such as my barking butterfly. The true challenge would come in minimizing his “order fixes”... if anything, that would be the hard part. But, my energies could now be very focused and I was excited to say the least.
I could now expand our “non-sense color game” to include verbs as well. Instead of “green bear”, I could now say, “a green bear is walking down the street with a yellow hat”. I would make sure I minimized routine and kept it only to actual “I’m teaching you math, reading, etc.” type activities. I could start leaving clean clothes on the bed, with a basket of dirty laundry near by and start to actually show Zachary why they did not go together... that some clothes “smelled good” and other clothes “smelled bad or had stains” and I could show him how to put the “dirty clothes” in the washing machine to make them “smell good”. I could continue to “un-do” what he ordered or grouped to make him familiar with the disorderliness of things.
All I had to do was break order... like my sister-in-law had said, that could be as simple as switching chairs at dinner time, changing who wore what hat or mittens to go outside, etc. When he spoke in non-sense language, I just had to distract him with something else. When he said, “fan” for example, to get an “order fix”, I would immediately take his attention away from “fan” and say, “yes, that is something we use to keep the house cool”. I knew I could not say something like, “yes, a fan turns to keep us cool”, because that would put the focus on “turning” and give him his “order fix”. I could be creative though...I now knew what to do and that was 90% of the battle. If Zachary said, “green truck”, I could say, “yes, green trucks take food to the store”. I would slowly have to deal with each and every one of his “order fix” behaviors... verbal, motor, etc. Whenever he went for that “order fix”, I would have to distract him with something “fun”. If he spun himself, I could put myself in his path and give him a horseback ride, something he now liked. If I thought about it enough, I could certainly come up with something to attack all his “order fixes”. The key was simply to break the need for complete order and to allow for the “in between”!
My “working” with Zachary had just taken on a whole new dimension, but that was ok...because I now knew the enemy and that made life 100% easier.
So, there I had it... the key to my son’s frustrations. For concrete objects he could touch, grouping of like items in shape, size and function was critical to Zachary. One of a kind things like a stuffed animal, etc., those objects did not bother him because they were not part of a group “per se”... to be considered part of a group, they would have to be all similar in shape, size and function. For more abstract things, they had to follow convention...for example, a dog could not meow...that lacked order in the “normal” world. Zachary had to stay on the gluten free and casein free diet. I knew that helped him tremendously with all the problems he had as far as his senses (sensitivity to light, sound, touch, smell, taste) and it kept him in “this world” as opposed to his being in a “drug induced state” as a result of the casein and gluten. “Saving Zachary” had just become a two step approach: 1) a casein and gluten free diet that was also low in phenols and 2) behavior therapy to deal with inappropriate/ fanatical “need for order”. Zachary had been on his casein and gluten free diet for over a year and a half. If only I had figured this out sooner...I could have worked on “the need for order” as soon as I saw he understood ...when he was no longer in his “drug-induced state”. That was not to be. But, I could now start my own home “behavior therapy”, and the best part was that I could do this with everyday objects in my house.
I was convinced that breaking the inappropriate need for order would be the key to having Zachary function in society. Society would indeed have difficulty accepting this. After all, “routine” had so long been advocated as “the key”...but it was not “the key” and I knew that! “Breaking order” and “allowing for the in between or partial” was the “key”. Routines were indeed a double-edged sword. You needed some order to teach educational materials, however, routines provided “more order” and “forced order” to a child who already had too much order and thus, provided that “comfort level” via “order” just reinforcing exactly what Zachary and other autistic children probably should not have. That, I truly believed was why so many autistic children did so well with “routines”....they provided “ORDER”! The fact that I could now literally turn Zachary’s frustrations “on and off like a switch” told me I was on the right track. No routine could ever do that the way I had. A routine was simply an “ordered, artificial state”. I had to break the order in order for Zachary to truly function in “the real world”... a place of randomness, a place lacking in order in so many ways. Knowing what I now know about “routines” (and how they provide order) and the need to “break order” as the key to behavior therapy in the treatment of autism, please keep in mind that the books listed in my “suggested reading”, at the end of this book, do emphasize “routine” and I honestly believed that this was not the best alternative. That was very different from saying that “behavior therapy” played no part. I now knew that behavior therapy was indeed critical for these children...but not in providing “routine”... rather in “breaking inappropriate need for order”. There was probably not a single behavior therapy book out there in print today that will tell you that...and that was another reason why I had to put this out over the Internet and give it away...for parents of autistic children, this was just too important to wait! Behavior therapy had to take on a new focus... I honestly, honestly believed that. And I could now see how behavior therapy, also, had become a critical piece to helping these children “break order”.
That would be my plan of attack this year. Life had been so much easier over the past few days simply because I now knew what to look for. For Zachary, and I suspected many other children with autism, there was definitely a difference among a) order, b) routine and c) randomness and that impacted how they behaved given the situation dynamics for each of those types of situations. I was now convinced, also, that role playing was necessary to set for Zachary a point of reference to draw from, a “databank” for situations he was not familiar with. The simple fact that I could turn Zachary’s frustration on and off like a switch told me I was on the right track and that God had given me the key to my puzzle... the need for ORDER! ORDER! ORDER! It explained so much!
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