Routines And Other Therapies... Why They Work... And Why They Don't Work!
Routines, Hand Over Hand, Auditory Therapies,
Pressure Therapy - The Physical Compartmentalization Of The Autistic Child!
Concluding Comments On Therapies - In General!
When it came to behavior therapy and the autistic child, I simply could not even begin to count the many "therapies" out there – nor did I have any interest in researching all of them either! As such, this section would not be an attempt to review all therapy practices but rather a section to helped parents understand why "some things work" and "others do not"!
Perhaps one of the "most accepted" principles out there when it came to the autistic child was that "routines worked for these children". I would argue that, truly, this was simply not the case! In fact it was just the opposite that was needed for the autistic child!
Before going further in this section, I encouraged all parents to read my section on Socialization as it related to “routines” and “familiar environments”.
In my opinion, "routines" provided a familiar environment or sequence of tasks and in doing so, the autistic child came to understand the "parts" that made up "the whole" in terms of what "made up" his physical environment (the people, things, etc.) and what "made up" the parts or sequence of daily life. When things were constant, either physically or in terms of the sequence of one's daily tasks, it was much simpler to "decode" the parts that made up the whole in everything... and once decoded, frustration levels, obviously, were reduced for the autistic child. Did that, however, mean that this was the "best practice" in terms of how these children should be handled? In my opinion, the answer to that question was a resounding: "No"!
Although routines provided consistency, and hence a sense of control and predictability, in the autistic child's world they kept the child in a "synthetic" world... one that was never, or only barely, changing and one that provided for very little in terms coping with "real life", opportunity for growth, and hence, the ability to actually leave behind the shackles of autism.
It had not taken me a long time to realize that, for Zachary, his stress level came not with a new environment per se, but with a lack of understanding of what was in that "new environment". I had noticed that he experienced no particularly heightened sense of frustration or stress whether he was in my house or someone else's house. He experienced no particularly heightened sense of frustration or stress if I went to a new grocery store or the "old" grocery store. In no time, I came to realize that "these places" - in and of themselves - did not increase Zachary stress levels. Yet, so much in "accepted practices" had stated that "routines were key" for many of these children. For a long time, this had puzzled me. How could my experience have been so different from "accepted practices" in terms of "routines"? I had on so many occasions taken Zachary to the homes of persons I knew, persons who for Zachary were complete strangers. Their homes, also, were completely strange for Zachary. Yet, on so many occasions, I had seen him perfectly "at ease" in these "strange homes". Almost the second he "hit the door" and was inside, he would do as he did at our house... take off his shoes and start looking for something fun to play with.
If routines were so critical to these children, why was it that Zachary experienced no heightened stress whatsoever in such situations? In reality, I found Zachary actually thrived the more "I broke his routine"! I made it a point to drive home taking "different roads", to go to new stores, to go to new places, to try new things, etc. - and through it all, Zachary strived more than ever! Why was it that my experiences with my son simply went so against "accepted teachings" in terms of "what worked" for these children?
As I came to understand Zachary more and more each day and to understand autism more and more each day, the answer soon came to me. All houses were pretty well the same in that they were all places where people lived and they all pretty well had the same "objects" in them... doors, floors, ceilings, dishwashers, refrigerators, stoves, bathrooms, bedrooms, kitchens, etc. The same was true for all grocery stores... they all "looked" pretty much alike and all had pretty much the "same stuff" in them. The same was true of all parks, all beaches, all schools, etc. Once the "parts" to something were understood, the whole, in terms of "where it was" or "when it was done" really did not matter at all!
I soon came to understand that the key to everything, for Zachary, was not having consistency in "where he went" or "what he did" but rather in having consistency in the understanding of the "parts" that made up the "whole" in every place, every situation, etc. Once the parts to places and things had been labeled and those things were understood, it mattered not "where" they were encountered or "when" they were encountered. Labeling the "parts" was the key to it and once those parts had been labeled, Zachary could easily cope with them regardless of when or where he encountered them.
As such, it was my firm belief that autistic children needed to be brought out of their "routines" and into the "real world" as much as possible and that the key to doing so with minimal stress for the autistic child was in labeling absolutely everything for that child from the moment he left his "familiar" environment – starting with the “big picture” and quickly moving down to the most minute detail in everything. For example, starting by saying: “opening the door”, then labeling any stairs, cars, etc. Only by doing so would the autistic child truly learn to cope with "the real world" and how things worked in “real life”. To leave an autistic child in a "synthetic" environment where things and sequences did not change or changed only slightly, was to give that child basically no coping skills for life - to let him live in a bubble that could not be burst! But, all bubbles did eventually burst, however. People moved, family dynamics changed, etc. And, as such, to keep an autistic child in a "bubble" was the worse thing you could do for that child – other than putting him in an institution (see section on When Rest Is Work Too!), because the day would come when that bubble would burst! And, then, what would happen to that child if he had been provided no coping skills to adapt to a changing world?
I realized there would be many parents who would be absolutely heartbroken by what I was saying here… many parents who had had no choice but to institutionalize a child they simply could not care for due to the fact that so little was known… and the fact that these children were so misunderstood, by everyone. As a parent of an autistic child, I understood just how overwhelming life could be with such children. Those parents, who had institutionalized their children, perhaps now, could work with institutionalizations to help make life finally better for these children. My heart truly went out to these families… families that had been so devastated by autism that the entire family unit was, literally, ripped apart. It was for all autistic children, including those in institutions that I felt, more than ever, that parents, grandparents and, indeed, society, simply had to stand united, in a single voice, in demanding very specific things from the government when it came to the care and therapy necessary for these children. For more on this issue, see my section on “First Steps For Parents!”
By taking the child out of his bubble, be that a routine, or an institution, and in providing labels and explanations for everything in his world, helping him to "decode" life you provided much more in terms of necessary coping skills for that child... and much more in terms of "growth" and quality of life for that child!
In working with Zachary, I always remembered the words of my mother, now deceased... the mother of ten children... who so wisely always said: "Children need to be made part of life to thrive and grow". Although she had no degrees, she truly understood child psychology... and she knew that children simply could not live in a bubble and do well! Although my mother died prior to Zachary's birth, her words rang loudly in my heart and so greatly helped me in the recovery of a grandson she never knew – a mother, and a grandmother who very much understood the real keys to life, a mother and grandmother – so, truly, truly missed!
As with so many things in life, the beauty and simplicity of common sense and the undying love and devotion of a mother, or father, indeed lived far beyond even death and went so much further than any degree in those things that truly mattered in life!
The "fragile bubble" of a routine, so long advocated by experts was but one of the many false keys that had for so long been provided to parents of autistic children in terms of what was "needed" for these children. This, however, truly was a false key in that it could never truly unlock the shackles of autism because it did nothing to address the root cause of the autistic child's enslavement!
In examining the autistic child's inability to understand the whole without first understanding the parts that made up the whole, as I thought about various "therapies" I could easily understand why some would work better than others, when understood in term of how they helped the autistic child to "break the code".
For example, picture and word associations (such as seen with PEC - Picture Exchange Communication) were simply a method of providing "labels" for children and hence, once that "connection" that pictures or words "represent" something was made, the child moved forward. The issue with word and picture associations, however was that they truly were not the cornerstone building block... the cornerstone on which all other communication was built. That cornerstone was the alphabet – although, perhaps, pictures could be used as a tool to help the child learn the alphabet. But many factors needed to be involved in the laying of this first cornerstone – this first building block to decoding one’s world (see Language section).
The alphabet, I believed, had to be the first building block for all these children, for if that symbol/meaning association was not made, then communication would never proceed as efficiently and effectively as it perhaps would were the first cornerstone properly laid! Did autistic children need picture/word associations? Absolutely! The key to almost everything in the autistic child's life was in labels - in labeling all the parts to the whole to "break the code" and in providing those labels in a variety of ways. But, as everything else, the label itself had to first be defined! The autistic child needed to understand "where it came from" and that could only come from an understanding of the alphabet - first and foremost! Once the alphabet was understood as symbols representing "something", and that these symbols could then be put together to represent something else, then the autistic child could easily generalize that "concept" of labels and use it for all associations – to more completely decode his world!
Hand Over Hand
Hand-over-hand - Why this can be an excellent tool for the parent of the autistic child who knows how to "move on", or a crutch that needed to be let go!
"Hand-over-hand" was a basic behavior therapy practice that parents of autistic children needed to be aware of. Basically, with Zachary, I had always instinctively done this, but, I wanted to make sure all parents were aware of exactly what this was since many of you may be doing this without actually realizing that you are.
Again, based on the fact that I found order, and specifically, partiality processing to be key in everything that was a problem for Zachary, that also became a "key" I could use in teaching basic life skills. If things had a "specific order", that meant, by definition, they had a beginning and an end.
In working with Zachary, I found that if I helped him "do the first motion" for a task or process, he could go on and complete the task himself. So, to a child who knew only an "all or nothing" world, simply doing the first motion made it so that he saw "this task" now had to be completed. The partial motion, the partial process triggered the desire to complete the whole! That was why this technique worked so well with these children!
This, I found to be true for teaching many life skills, such as getting dressed or undressed as well as things like writing, cleaning up, etc.
For example, in teaching Zachary to put on his socks, I literally took his hands and showed him how to put his thumbs inside the socks and then told him to pull them up. The "action" of putting his hands on his socks helped him to "do the task" because that was the first "part" of "putting on socks" (I still took the socks out for him...so, I could work on that...and teach "getting the socks out" as the first "part" of the task...the first "motion" in the "critical path" to the process). The idea was basically to simply "get him started" with the task.
If I kept talking to him and encouraging him as he completed the process, then, I found he was more open to doing it the next time...more independently. I think with many, many tasks, the key was simply a matter of "initiating" what you wanted the child to do and eventually, the child figured it out and could do it with minimal prompting (such as a simple, "put your socks on"... and later, a simple, "get dressed").
The technique of "hand-over-hand" was definitely something I think many parents "did" without realizing it was actually a "technique" that worked well for autistic children.
I had recently played a game with Zachary and I used this technique and that was what had reminded me to include the discussion on this topic of "hand-over-hand". I had taken a deck of cards and was on my back on the floor. As Zachary tried to zoom past me, I would take the deck of cards and make all the cards go flying "at him". He thought that was absolutely hilarious. When the game was over, I picked up half the cards and placed them on the table. As I was busy picking up the other half, Zachary was busy throwing the first half back onto the floor (to him, all cards "went together). I took his hand and forced him to pick up the cards with me. Verbal prompting alone did not work. I had to literally take his hand and force him to pick the first one up. Once he touched the first one, and placed it on the table, he picked up all the others just fine too. So, as he helped me clean up, I simply kept saying, "good job helping mom pick up the cards", or "what a big boy...helping mom clean up...thank you!". Before I knew it, he had completed the task. So, although it was difficult to "initiate" the first move, to force him to pick up the first one by me actually taking his hand and making him do it, once the first card had been picked up Zachary understood what was expected, and he gladly completed the process/task.
Sometimes, when you do something and get the results you wanted, you may not know why it was that "it worked"... and as such, I wanted to make sure parents understood this "technique", because I was sure many parents were doing this without realizing it and perhaps not identifying this for what it was...and the next time, because you did not make that association and perhaps did not understand exactly "what worked", you may not tackle the task the same way and hence wonder why you could not get the desired result. Therefore, I wanted to make sure parents were specifically aware of this valuable technique, known as "hand-over-hand".
Hand-over-hand was a valuable technique indeed in that it could truly help teach the autistic child many, many processes. However, as I had so often done, there was an almost inherent desire for the parent to continue to "do too much" for the child rather than move on to the next level of simply using verbal prompts. For example, when trying to go somewhere in a hurry, I would often still help Zachary to put on his socks - still help him with that first motion or the entire process. It took a great deal of patience to simply "let him do it all by himself" when I was in a hurry. :o) But, in reality, that was what needed to be done. The time had to be taken for the child to do the task on his own, in order to move toward the simple use of "verbal prompts" such as "put your socks on" or "get dressed when you get up in the morning" and to eventually move to no prompting at all. :o)
It would only be much later as I progressed in the writing of these materials that I would truly come to see why Hand Over Hand worked so well with these children – the answer had to do with the sense of touch, as would soon be clearly evident for all parents!
As with so much in the life of the autistic child, the benefits of auditory therapy could be traced back to how they work in terms of "parts to the whole". Music therapy, for example, by the very fact that "music started and ended" provided for the autistic child "a whole" ... its parts all "fit together" beautifully to form this thing called "a song"... and the song kept going until it was all done. Hence, music provided for an excellent coping mechanism for these children - a non-stressful way to relax (non-stressful in that all the parts "come together" to form the whole).
Although there were many sounds within music itself (in the form of various instruments, voices, etc.), it appears to me to be the case that, as with so many other "sounds of life", the overall music was simply viewed as that "background noise" that the child had learned to accept as everyday life. Loud, unexpected noises, within a musical selection, would, however increase the autistic child's stress level, most likely causing him to put his hands over his ears because such "unexpected" noises brought a new "part" into the equation... a new “part” that had to be integrated into the whole.
Auditory therapy, in terms of providing various “unexpected sounds” and/or frequencies of sounds would result in stress, initially in the autistic child, undoubtedly making him cover his ears. But, it was my opinion that as the child adapted to sounds, as they became familiar due simply to repetitious exposure, that these sounds would no longer pose a problem – especially if they were always presented in the same “order” during therapy because the child could, based on “order alone” anticipate the “last sound”.
If therapy involved the actual labeling of sounds, then, I believed the autistic child would make much greater progress in terms of “adjusting” to the sound than if those sounds were not labeled. In my experiences with Zachary, when “unknown” or “unexpected” sounds were labeled, they could then be dealt with. Sounds that were not labeled always took much longer to get used to, because unlabeled or unexpected sounds introduced a “new part”, a new “element” that had to be “decoded” – an element that would continue to be a source of frustration as indicated by the child’s placing of his hands over his ears until the “new part” was decoded or defined/labeled.
When the reason Zachary covered his ears had to do with the “content” of what he heard (i.e., “get to bed”), I found that simply saying: “take your hands off your ears and listen to mommy” really helped in that I could then, slowly and gently provide a “further explanation” of what was expected.
Obviously, a video of “sounds” providing visual representations or associations of “what made those sounds” would be of great help to these children! Sounds of animals, sounds of people, sounds of things, etc. – in my opinion, all sounds had to be labeled to be understood!
I did believe, as with all senses, that there was more to auditory issues than simply the issue of how "things come together" to form a whole. I did strongly believe that there may be issues with actual sound frequencies and the actual physical inner workings of how the ear perceived sound, in all likelihood, perhaps even involving a degree of pain for the child as sound waves "hit the ear". I had noticed that in spite of labeling, Zachary still did have sensitivities to certain sounds. Enzymes had helped him tremendously with this issue.
In terms of auditory issues, I was even more convinced that there could be actual physical damage due to things like heavy metals in vaccinations. The reason I say this was because when Zachary experienced what I believed to be a very severe reaction to cod liver oil (and the possible heavy metals such as mercury it contained), I noticed his hearing was much more sensitive the following week or two. This experience had been enough to convince me that there was more at play here than simply “labeling things” for autistic children in terms of auditory issues. Indeed, I believed this to be true for all senses.
In my opinion, from what I had seen in my own son, it was as though all senses themselves had been somehow actually physically damaged – that the physical parts within the body involved in processing sensory information had somehow sustained actual, physical damage. I was absolutely convinced of that! Pictures of what I believed to be a reaction to cod liver oil were found in the Appendix to these materials – and there were many more on my website, along with an overview of the day’s events when this reaction happened.
Again, as with so many other factors, as I progressed in the writing of this book, I more clearly understood the role of auditory processing. The key to issues with auditory processing truly had to do with the difference between “incoming sound” and sound generated by the child himself, as parents would come to clearly understand as they, too, progressed through these materials!
Pressure Therapy… The Physical "Compartmentalization" Of The Autistic Child!
There were various "pressure" therapies available for autistic children... some of them, rather expensive. These included pressure vests and pressure equipment of all types.
Given the importance of the autistic child's need to "compartmentalize" everything, to understand how all the "parts" fit into the whole, to "organize his world", I could understand, why for some children, these therapies appeared to work.
The very act of putting pressure on the child, in a sense, allowed him to "compartmentalize himself" - physically. Undoubtedly, for a child who was frustrated and who was unable to understand his world, this may indeed provide a great sense of security. In my opinion, however, the key was still in helping the child to "break the code", in helping him to understand his world and in helping him to understand the sensory information he needed to process (i.e., the information he received from his sense of touch, as it related to his sense of "self" and his sense of "others" in terms of "where they begin and where he ends" - in terms of being able to understand "his parts", as opposed to the "parts" of others. For more on this issue, please read my section on: I Don’t Like To Be Touched!/Issues With Touch In The Autistic Child). Once the "code was broken", stress and frustration were greatly reduced and as such, a simple hug may be the only "pressure" the child needed.
I have absolutely no doubt that the autistic child, like all children, was in constant need of reassurance and as such, constantly sought those things that provided for him security. Zachary used to often watch the video: "The Very Hungry Caterpillar" based on the best selling book written by Eric Carle. One day, as Zachary experienced a heightened level of stress, I noticed he was wrapping himself in a blanket. When I asked him what he was doing, he responded: "cocoon". He was physically placing himself in a "cocoon", in a place of comfort and security - a blanket wrapped tightly around him. Pressure therapy was no different than Zachary's "cocoon" - it was a physical way to obtain comfort and security in a world of frustration. :o)
If this were indeed true, then the danger of pressure therapies was again in the fact that they could provide a "coping mechanism" that could simply allow the child to "not deal" with the source of frustration - thus again, not getting at the root of the problem. I did believe that the sense of "physical security" was truly important for the autistic child, but I also did believe that this physical security needed to move from "pressure therapies" to an understanding of that which caused the frustration in the first place - to understanding what made it necessary to seek "physical security" in the first place. Once that happened the autistic child should no longer need more than a hug when it came to "pressure therapy". :o) As with all senses, I did believe there could be actual physical damage to the body parts involved in how sensory information was processed. See my section called “I Don’t Like To Be Touched!” for more on this issue. Again, the sense of “touch” played a role, as would again, become clearly evident… it was all coming together!
Concluding Comments on Therapies…
Obviously, there was no way to possibly include the multitude of therapies in this book… nor did I plan on investigating them in great detail in the future since there were just “too many therapies out there”. In closing, I simply wanted to ask parents to look at "why" certain things worked and why others "did not work" and to always look for the pros and cons in all therapies... including their costs, and especially, their reward and/or punishment systems – especially given the information in my section on Discipline.
Many "therapies" were outrageous in terms of "what they cost"... and that was in everything from behavior therapy to pressure therapy. As with everything in life, parents needed to look at what worked, what did not work, weigh that in terms of physical, emotional, etc. benefit/harm to the child as well as in terms of cost/benefit analysis... keep the good and throw out the rest! There were many things parents could do to help their children deal with issues of partiality without spending a fortune, as parents would see in my sections on First Steps For Parents!, and, Exercises I Do At Home.
I was not saying that current therapies simply did not work...some did, some did not. What I was saying, however, was that parents needed to be much more critical of what worked and what did not work and to carefully weigh the costs and benefits of all intervention methods/practices! In my opinion, those therapies that were perhaps most beneficial were those that provided positive coping mechanisms for the child in order to help him “break the code” and understand the world about him – a world he very much needed to be a part of and those that helped address the real physical damage I believed could be present in the physical workings of the senses – damage I very much suspected existed in all autistic children!