Difficulties In Discipline…
Although I had now trained myself to observe Zachary’s every move, his every utterance, his every glance, much of what I had come to understand about autism, quite frankly, had been as a result of conversations I had with my sister-in-law - Christine – also the mother of a child with autism.
Christine had gone through a great deal with Andrew. Andrew had been misdiagnosed for years. He had also undergone heart surgery as a young boy and like most children with autism, he had tremendous difficulty in making friends. While Andrew was in school, it became obvious that he was falling further and further behind and as such, Christine had decided to school him at home. Under his mother’s care, Andrew thrived. There was no doubt that with his mother, he was learning more than he had in school.
There were still major areas of difficulty for Andrew, however, as there were for Zachary, and that, as was so often the case, resulted in elevated levels of stress for everyone. When the stress set in, it was time to “talk it out” and that was usually when Christine and I called one another – to share experiences – to share frustrations – and yes, even to share a laugh!
Christine had been so completely devoted to her children. Her daughter, like mine, was “normal” and was approximately the same age as my little girl. Thus, Christine and I shared a great deal in common and we often talked about “our sons” or “our daughters” as we shared our experiences, our frustrations and our joys.
On this particular morning, Christine had called rather early. It was a beautiful spring morning, yet, as I picked up the phone when Chris had called and she had said: “hello”, I could sense in that “the day is only starting and I’m already exhausted” tone in her voice and that – need to talk…
“I just don’t know what I’m going to do… It’s as if Andrew can’t tell the difference between a child and an adult…”, she stated.
“What do you mean?”, I replied.
“Well, I’m just having a really, really hard time with discipline lately”, Christine had answered.
Andrew was approximately 12 now – just entering those turbulent teen years – and his mother knew that discipline or maintaining a sense of “control” was important in teaching and providing direction for a child – especially in a child with autism who had shown initial signs of increased aggression during times of frustration – something, that unfortunately, was not uncommon in children with autism. This appeared to be even more of a problem for some of these children as they entered puberty. Christine had indeed become an expert at controlling her son. If Andrew erupted in frustration, she could always “bring him back” fairly quickly and “make him understand the situation”.
Note that at puberty, the brain underwent tremendous reorganization and pruning. Increased aggression was a sign of temporal lobe damage – something I very much believed could be happening in these children with the onset of puberty. This issue was discussed at length in my third book, Breaking The Code: Putting Pieces In Place! and in my second book also, Breaking The Code To Remove The Shackles Of Autism: When The Parts Are Not Understood And The Whole Is Lost!
Our conversation continued…
“It’s as though Andrew doesn’t understand what is appropriate for a child and what is appropriate for a parent…” Christine went on to say. “For example, if I tell him he can’t watch television or something, he thinks that means no one else should be allowed to watch television or listen to the radio, or play on the computer… If I tell him he has to go to bed, he thinks I have to go to bed too… it’s like he can’t differentiate between what is appropriate for him and what is appropriate for me…”
“The other day, we were talking and Andrew said to me: ‘Will you just be quiet for a minute…’ You know, if he said that to me in public, I’d have all these looks from people thinking “how can you allow your kid to speak to you that way… that kid needs a lot more discipline…but, he just can’t tell the difference between what’s appropriate for him verses me… ”.
I laughed a little as I listened to Christine in her moment of frustration. “Chris… don’t you get it? It’s because these kids live by reference” I replied. “Andrew just thinks that what is appropriate for him is appropriate for you… he’s heard you say, “will you just be quiet for a minute” when you need to speak and say something, so to him, that’s just a way to have you be quiet so that he can speak. He just doesn’t understand that “that phrase” is ok for a parent to say to a child but not for a child to say to a parent… these kids live by reference Chris… so, when you use that phrase, you provide a reference for him… and now, he’s just using it on you… he’s just “parroting back” or using his “reference” of what he knew had worked for you in the past when you needed to speak… he just figured that if that phrase worked for you, it should work for him when he needs to talk too… It’s the same thing with the behavioral stuff… to these kids, everything is a reference… if something is appropriate for one… it is appropriate for all… until they are taught why that isn’t the case… ”
“Jeanne, do you know how hard that is… How are you supposed to discipline a child when he can’t tell the difference between what is appropriate for a mother and what is appropriate for a child?”.
I laughed. “I understand exactly how hard that is, Chris… but, you just have to teach him the difference… until he is literally taught what is appropriate for a child and given an understanding of why something that is appropriate for a mother to say may not be appropriate for a child to say, and until you give him an alternative reference to use when he needs to speak, he won’t know the difference…just teach him what he should say when he wants to talk and make him understand the issue or concept of discipline and why it is important for children to listen to their parents… I know it’s hard… but that’s what you have to do… in both his speech and behavioral issues… It’s not that he is being disrespectful, Chris… he’s just using the references he has… that’s all… what he hears you say, he’ll say… what he sees you do… he’ll do… because he lives by reference… everything in his world, everything he sees or hears from you or anyone else… on tv… on the radio… everything becomes a reference for future use with no distinction or judgment as to what is –appropriate…that’s why I think changes in environment are so hard on so many of these kids – a change in environment is a complete change in references… see what I mean? ”
“Well, yah… but this sure doesn’t make it any easier… can you just imagine the looks I’d get from people if Andrew told me in public… “Will you just be quiet”… people would just be flabbergasted to hear a child talk to his parent that way and then, they’d think I’m letting him get away with it because they wouldn’t understand the situation…”, Chris answered. “I’d be seen as a parent that totally lacked discipline… and you know that’s not true…”
“I know, Chris… but, if you think about it… actually… it is easier once you understand the issue… because now, you know what you need to do to address it… society just doesn’t understand these kids and what their parents have to deal with…” I said.
Chris laughed. I could sense the relief in her voice now that she realized this was just a shade of the same issue – what I called “reference living and reference communication” – and not an issue with her son being “defiant”.
She and I both knew now that if our sons said: “no, you listen to me…” it would not be because they were not listening or were being openly defiant of us but rather, it would be only because they would be repeating or using a “reference” of what they would have heard us say to them.
Understanding this issue of “reference living” and “reference communication” in children with autism was absolutely critical, in my opinion. It brought great sorrow to my heart as I thought of the many, many children with autism who had undoubtedly been viewed as “defiant” and in all likelihood punished as a result of this “perceived defiance” – when in actuality, I believed they literally were simply so completely – misunderstood – when it came to issues of “reference living”!
I urged all parents of children with autism to be very, very cautious in the area of discipline because, if indeed I were correct, the implications of all this, were truly overwhelming – especially given that due to the very fact that I believed these children lived “via reference” – any discipline provided would also very much, in and of itself become “another reference”. Thus, if a child understood not what he had done that “was wrong”, and was “disciplined” for having done something he did not perceive as wrong – that, potentially, could send a very, very negative message to these children – that perhaps, it was alright to “discipline” for no apparent reason – and if that “discipline” involved physical means – the implications of that were very serious indeed for a child who, I was more and more convinced, lived very much – by reference!
Understanding issues of discipline – for both parent and child – and the need for both to understand these issues – as they related to “reference living and reference communication” –was – absolutely critical to all! I certainly was not saying that a parent should not discipline a child when necessary. What I was saying, however, was that a parent had to have a very good understanding of why the child had done or said what he did and whether or not what was said or done was but a reflection of a “reference” the child had previously been given. The key to discipline in children with autism such as Zachary, I believed, was in teaching them what was appropriate for a parent and what was appropriate for a child – for a given situation – and in teaching them why there existed a difference between the two in the first place. Patience and understanding – absolutely key when it came to discipline for – the child, and, - perhaps more so – for the parent or caregiver (i.e., teacher, therapist, etc.)!
I knew Chris to be a very, very patient and loving mother. She too had poured her life and soul into her son. Her journey had been a much more difficult one because Andrew, for so long, had been so misdiagnosed and Chris, like so many other mothers, had been so completely alone in trying to understand her son – a son, she too, loved so very, very dearly.
I had always been so fortunate in having Christine to go through the trials of autism with me. Through Andrew, so often, I had been able to “prepare” for what I should expect “down the road” as Zachary got bigger. I had learned so much about autism not only from Zachary but, from watching Andrew also and from talking to Christine. It had been because of the immense difference in “knowing what to expect” that I had so wanted to share our family’s journey with other families – to provide for them what Christine had provided for me through her trials and frustrations and most importantly, through her countless and invaluable observations. Like me, Christine was now noticing so many of those little things in her son that previously, would have perhaps gone completely unnoticed – those little things that so often held the keys – to so much!
The issue of discipline certainly was one that involved so, so many aspects of life. Communication, diet issues, behavioral issues, etc. – all of these fell under the umbrella of “discipline”.
Not long ago, Christine had called her brother, my husband, to let him know a neighbor had accidentally died – a very young man, with four small children – a young man my husband had known all his life. Often, Christine only spoke to her brother and then I was later “filled in”. This death had very much upset my husband as this was a young man who had worked so hard for his family – and now – totally without warning – he was gone and his family certainly could face very difficult times ahead. Frederick very much suspected this young man would not have had life insurance – that insurance would not have been something he could have afforded. I could see the news of this death weighed very heavily on my husband. After we spoke of Bobby for a while, I asked Frederick “what else” his sister had said as I usually did after one of their many long conversations. Christine phoned often as we phoned her often also – to share a laugh – or, as in this case - sorrow.
At times, it was mainly Frederick who spoke to his sister… at others times, it was I. We just “took turns” and Christine knew that whomever had spoken to her that day would “fill in” the other person. Whenever Frederick told me about his conversations with his sister, he was always careful to include anything Christine had said about her son Andrew given he knew I would be very interested in that information. On this particular day, Frederick had told me that Christine had taken Andrew to a naturopath – a person who preferred to use natural ways of healing the body. Andrew, a boy very much on the autism spectrum (pervasive developmental disorder) was now twelve years old. This particular man had suggested that Andrew avoid casein, gluten and sugar. Well… needless to say, I was not surprised. Zachary was already casein and gluten free – as were many, many children with autism. Andrew had been misdiagnosed for so long that by the time his family realized the issue was “autism”, he had actually already developed verbal skills and was interacting with his family. Zachary, however, had been very much in his own world and removing the casein and gluten had made a world of difference in his life.
There were many other issues, that in my opinion, could have helped to explain Andrew’s speech development – such as “the mystery in the right temporal lobe” and the possible implication of anesthesia in speech development in children with autism as a result of temporal lobe damage. Anyway, the point was that because Andrew had developed communication skills that had, in part, contributed to his being misdiagnosed for a very long time. As such, Christine had never placed him on a casein/gluten free diet… and now, here she was, being told Andrew should avoid these things as well as sugar.
Andrew certainly did not have that “drugged out look” that Zachary had once had. Andrew was very alert. All this made me wonder about how much – time alone – could heal in these children. Zachary had now been casein and gluten free for just over three years. And he was doing fantastic progress. Andrew was doing well in some areas (i.e., very good conversation skills), but, in others, he certainly seemed to struggle more than did Zachary when compared based on skill level for attained age in certain areas – especially mathematics. Zachary was only six and he seemed to be just about at the same level as Andrew – now a boy of twelve. Thus, I suspected putting Zachary on a casein and gluten free diet could have been a contributing factor as to why Zachary now did so much better in mathematics than did Andrew, but, I had no way of knowing for sure.
A casein and gluten free diet was rather overwhelming to implement at first – but, for us, it had been the right thing to do and I knew that in my heart. As difficult as I had found it, at first, I knew that for Christine to implement such a diet now, with a twelve year old boy who had very much enjoyed the “variety of foods” – including “offensive foods” such as casein and gluten – would be a challenge indeed. It was because of this that so often, it seemed parents tried to do a “partial diet” – removing either only casein or gluten – one at a time – to see what that would do. Parents on discussion boards often stated that just removing “casein alone” had shown to be a significant help for their children.
The thing that had somewhat concerned me, however, was that Christine had been told to avoid almost sugar – including processed sugars and many natural sugars as well – especially from things like orange juice.
It had long been believed that “processed sugars” made children much more hyperactive. And, from a behavioral standpoint, that certainly would not be “a good thing”. As such, I very much understood the reason Christine had been advised to avoid “processed sugars”. Zachary received very, very few processed sugars in his diet. The only source I could think of off hand would be from the jam we sparingly put on his rice bread toast.
Most sugars in Zachary’s diet came from natural sources – things like honey. Zachary ate very little in terms of fruits. He just simply did not care for them. Every once in a while, I also gave him natural chocolate – maybe a square centimeter or two at a time – that was usually “the most” he would get in a day”.
I had long struggled with the issue of “sugar” in Zachary’s diet. Yet, I knew it could be a potential issue for behavioral problems and as such, make “discipline” a little harder.
And, I also knew that sugar contributed to yeast growth in the intestinal track – and that yeast overgrowth was a huge issue for many children with autism and that it create an improper balance in the digestive system. Controlling yeast issues had also very much been an issue for us and as such, I had given Zachary cranberry juice pills (from Kirkman Labs) in the past to help with that. I had found those to be rather expensive however, and so, I switched to a very inexpensive but, in my opinion, effective product that I could purchase at any local health food store – grapefruit seed extract.
Note: Grapefruit seed extract should never be given to anyone who has heart problems or is on medication of any type without first consulting a doctor as it can cause serious, serious complications. Grapefruit products – all kinds – seem to have the ability to “magnify” the effects of medication. Thus, even though an “over the counter” item, this one, for heart patients, could be very dangerous. It was because of issues like these that I urged parents to consult their physicians in the care of their children – especially when adding new supplements – because you just never know. I had always been fortunate in that my father, a doctor, was only a phone call away if ever I had any questions.
Olive leaf extract, oregano oil and garlic were other products parents of children with autism often used to help with “yeast issues”. Note that many of these products were very expensive and tasted horrible – even just a few drops – and that was often all that was needed each day. But, even a few drops could be a battle to give to a child when the product tasted “so strong” and/or “so bad”. Thus, I was very painfully aware of the “sugar issue” in children with autism. But, I was also very much aware of “another issue” when it came to sugar – the other side of the coin in all this.
Low blood sugar was very much associated with seizure activity. Knowing that children with autism often developed seizures as puberty, I simply could not find it within me to remove “all sugars” from Zachary’s diet. As such, I gave Zachary “some sugars” but tended to stay with “natural sugars” – like a little honey on rice toast, etc. There was a lot more on this issue of epilepsy and seizures and autism in my third book, Breaking The Code: Putting Pieces In Place! – a book I urged all parents to read carefully.
As such, yes, there were “discipline issues” that could certainly be impacted by diet (things like sugar, food colorings, preservatives, etc.), but there were “other issues” such as seizures that also had to be very much kept in mind when it came to children with autism. Parents wanting to learn more about “diet issues” could find a lot more on this topic of “diet” for children with autism in my first book, Saving Zachary: The Death And Rebirth Of A Family Coping With Autism! There were also many parent discussion boards on diet for children with autism. Diet issues were very much discussed, for example, on the Yahoo Group entitled enzymes and autism. The focus of this group was “enzyme supplements” to help break down casein and gluten – but – all types of “diet issues” were discussed here also. Parents could join this discussion group at the following link: http://groups.yahoo.com/group/EnzymesandAutism/.
My best advice to parents when it came to matters involving diet, was to be as informed as possible and do your homework. I knew my son, Zachary, but he was the only child I knew. As such, it was important all parents take responsibility for their children’s diets and supplements – and that meant, talking to your doctors – and also, very much – understanding the issues in the first place because if there was one thing I had learned over the years, it certainly was that the majority of doctors still did not seem to truly understand the many issues surrounding autism.
I had been given very little reason over the years to trust the medical community. Yet, truly, my distrust of the medical community had its roots not with doctors – because I knew most doctors did their best for their patients. My distrust of the medical establishment was rooted much more in a very huge distrust of the NIH and CDC – because now, without a doubt, I knew they knew of the many issues surrounding vaccines and of the dangers of neurodegeneration due to mercury exposure – as clearly stated in the Simpsonwood meeting transcripts – and still, all we saw from the CDC was denial in this issue of vaccines causing neurodegeneration.
The simple fact was that doctors also, trusted the CDC and the pharmaceutical industry to do what was right. As more and more doctors came to understand these many issues, I suspected they too, like me, would feel very, very betrayed by the CDC, the NIH and the pharmaceutical industry – those “supposedly doing the research” and producing the products on which so much in healthcare depended. Doctors not only depended on these organizations for direction, but for “continuing education” and if these organization were not truthful with parents – and did not admit or face the issues publicly – I had no doubt that they also did not admit the issues to doctors. My father had so trusted “the system” also. He had so loved medicine and still did. It was the politics of it all that he had always had a very difficult time dealing with – and that was true now, more than ever.
As such, I urged parents to help inform doctors of these issues by providing them with reports such as the Simpsonwood transcript and telling them about the University of Calgary video on neurodegeneration, etc. In my opinion, doctors were also very much victims of the CDC and NIH in all this… and all too often, they were the ones facing lawsuits when children were injured as a result of “their care”. Doctors acted as “informed intermediaries” and as such, they could very much be held liable for vaccine injuries sustained by children – after all, doctors were supposed to be “informed in these issues” – they were “the professionals” – they were supposed to have done their homework. Yet, when doctors were also lied to by the CDC and the NIH, how could they possibly be held accountable when injury resulted due to mercury, aluminum, and/or iron toxicity cases or injury that resulted perhaps from viruses themselves – as in the case of the MMR!
Thus, although I personally had had a very difficult time trusting the medical establishment, my intent certainly was not to tell families not to go to their doctors. Rather, it was to tell families to seek the advice of their doctors – while making very sure that these doctors were truly informed as to the many issues surrounding autism. Granted, many were still learning. But, if there was anything a parent could do to help educate a doctor in these issues, by providing things such as those mentioned above, then, in my opinion, it certainly was the responsibility of parents to do so. To assume the CDC would do this, in my opinion, would be a very bad assumption to make! The pharmaceuticals and government had attempted in the fall of 2002 to seal vaccine injury lawsuits from the public – that had certainly been for a reason!
Truly, matters of “discipline” as they related to “autism” spanned far, far beyond the parent and child relationship because it certainly appeared to me that there needed to be a little “discipline” provided to those sitting in the halls of the NIH and – especially - in the halls of the pharmaceutical industry and the CDC!
Before leaving the issue of discipline, I had wanted to provide for parents an insight on something I had seen recently for discipline in children with autism – this time, not in the area of diet, but in the area of behavior therapy.
This system for behavior modification in children with autism consisted of color-coded prompts. That idea – the use of color codes for something that was acceptable or not – was something I thought could actually work – especially with very young children who had “gotten away” with less and had “fewer references” to draw from in terms of what was acceptable or not. Of course, the reason I believed a “color coded system” could be of value was because I had seen the importance of color in Zachary’s life over and over again.
I had only very briefly looked at the materials provided on this particular website. Yet, in looking at these materials only very briefly, there was something that had captured my attention and concern immediately. The “concept” of color-codes for discipline, I absolutely felt could indeed work for these children. However, it only took “one bad reference” to send what could be, in my opinion, a very, very negative message… not in terms of actual discipline but in the area of communication.
This indeed, was the issue I struggled with. The materials had been put together to help with “discipline issues” – yet, what I saw, raised serious concerns in the area of “communication issues” in children with autism. As such, I did raise my concerns by sending an email to the author of these materials… because, again, I felt the concept was excellent – it was just “one card” I had seen that troubled me greatly.
Fortunately, my email received a quick response and the person who had replied to my concerns, indeed agreed with me that my concerns were valid and as such, “the card” was pulled from the Internet site!
Let me now explain “my concern” with this “one card” and the need to raise a “red flag” in this matter because clearly, issues of communication and discipline were very, very much inter-related.
This particular card was for “unacceptable behavior” and as such, it was coded red. At the top of the card was a short sentence telling children “not to talk during a certain time”… the picture below that text included was a picture of two children, with one emitting “sound waves” toward the other. On top of the two children talking was a big red “X” to indicate that talking was “not acceptable during this particular time”.
Now, herein was the issue. Many children with autism were clearly “non-verbal”. Many children with autism also did not know “how to read”. As such, in my opinion, the text at the top of the card could almost be “useless” unless the child knew how to read and understood the message being given – exactly. It was my belief, however, that for many children, that message would not be understood - exactly – and hence – herein came my huge concern.
If a child had limited communication skills, a card such as this, in my opinion, could easily send a message of “no talking” – and that message only – that “talking was not acceptable”! This was clearly NOT the message parents wanted to be giving to children who already faced great obstacles in expressing themselves. As such, although the card had been made for a “discipline lesson” – something these children absolutely needed in order to provide for control in the “learning situation” - clearly, the “communication lesson” within that card, in my opinion, had the potential for relaying a very, very negative message to a child with autism.
Personally, given I knew “motor functions” and “word associations” were co-located with the production of language in the frontal lobe and that “categorizations” and auditory processing were co-located with the understanding of language in the temporal lobe, I felt that to use something like a “sign” in sign language for “silence” on the card would be a much better message to send than a “no talking” message.
I, too, had learned something from my email exchanges with this woman. Originally, I had planned on using “red ears” in my appendix materials/exercises dealing with “listening”. However, as I thought about this, again, I, too, could be giving exactly the message I did not want to be giving to children with autism with something as simple as my “color choice” for ears.
I had stated time and time again that I believed colors played a huge role in Zachary’s life. Of that I had no doubt. Clearly, he also knew that “red = stop” and “green = go”. Likewise, in this behavior therapy program, “red = non-acceptable behavior” and “green = acceptable behavior”. As such, for me to use “red ears” in order to try to “draw attention” to the ears in my pictures – although a nice visual “for me”, clearly, for a child with autism, I could easily have been sending a message of “no listening” or “stop listening” with my “red ears” – exactly the opposite message to what I wanted to put across. As such, I decided to change “my listening ears” to “green ears”. The difference was perhaps, viewed as “subtle” by many, but, it was those subtle hidden messages that could be very detrimental or counter-productive.
In the area where I lived, there was a family nearby who had a child with both autism and Downs Syndrome. This child was approximately eleven years old. When I had first spoken to the mother about my theory of language production and the fact that it was co-located with motor functions, and mentioned to her that I felt that had to be why some of these children responded to “sign language”, she stated: “That must explain why he stops dead in his tracks when I do the sign for STOP”. I did not know this family that well and had no idea that she used a few signs from sign language with her son. This child had only a handful or so of picture cards that he used to communicate with his family. He also had yet to be potty trained. I knew that Downs Syndrome and autism had to be inter-related, especially since I now knew that a “dual diagnosis” of autism and Downs Syndrome was no longer considered rare. Indeed, the “dual diagnosis” was now a topic of discussion at International Downs Syndrome conferences. I very much suspected that iron had a role in this “relationship” between autism and Downs Syndrome. I provided more on this issue in my third book, Breaking The Code: Putting Pieces in Place!
Thus, with this child also, my theories seemed to be proving accurate. Of course, all this was just “my theories” on why something worked or did not work in the area of language in children with autism. But, personally, I could never take the chance of being “correct” in the issue of this particular “discipline card” with my son. Thus, again, the concept, in and of itself, of using “color codes” for acceptable or non-acceptable behaviors in disciplining a child, in my opinion, was excellent – it was just this one “communication issue” in particular that I had a huge issue with in terms of the message it could potentially put across to these children and, this one issue alone - for me - was huge!
Needless to say, I was extremely thankful when I received a message stating it had “been pulled”. I had only briefly reviewed these materials – but, again, I certainly could understand how something like this could indeed work based on what I had seen in my own son when it came to colors. For those interested in this “color-coding system” for behavior modification, these materials were available at: http://www.redandgreenchoices.com/Sample_Materials/8.htm.
Again, my issue had only been with “the one card” – the concept itself of using colors in discipline – I felt was excellent… and, in the end, I had very much seen that I, too, could potentially have made “the very same mistake” in communicating exactly the opposite of what I intended to communicate. It would have been that easy to provide such a potentially negative message! As such, this certainly had been a learning experience – for both of us!
As such, I too was grateful to Irene of “Red And Green Choices” by “Green Irene” for helping me to catch in my materials – before they had been seen by anyone - the very issue I had been raising in hers! :o)
The “horse before the cart” issue further complicated this matter of discipline and communication. Those who focused on “discipline” or “behavior modification” tended to see that as absolutely key and hence, to them, the focus was “discipline” and that had to come first if you wanted to be able to communicate with a child with autism and “get anywhere”, and there were those who argued that “communication” had to come first before there could be discipline. I was of the opinion that communication had to come first. Ideally, they had to almost come simultaneously, but unfortunately, that did not appear to be possible… and as such, it was of no surprise to me that “matters of discipline and control” could be so very difficult at times for parents of children with autism – especially, when combined with such issues as this, issues that could be so very subtle that they could so easily be missed by persons having the best of intentions!
END OF MATERIALS FROM BOOK 4 ON MATTERS OF DISCIPLINE...
Update - Posted June 2005: I wanted to share something with parents - again something obvious - that I had failed to see. Given the issue of "reference living" in children who have autism, perhaps one of the answers to helping in areas of discipline is to provide key references in terms of what is or is not allowed. How can a child know s/he is doing "something wrong" if a child was never provided "the rules to live by". To have an understanding that "you are breaking the rules", you must first "have an understanding of what the rules are".
I guess this issue really came to light for me as Zachary watched a movie when I visited my sister-in-law. It was a movie that had to do with The Ten Commandments and they were presented in an "easy to understand" way for very young children (i.e., Don't lie, Don't steal, Be loyal, etc.) and the video provided simple examples of "things done wrong" and "why they were wrong". While on a trip back home with my sister-in-law (she had to drive me home because of car troubles... I lived 6 hours away), we were both floored when Zachary started to say the "Top 10 rules" in perfect order... he parroted them from the video... word for word... in perfect order... counting them down from number 10 to number 1. It was a little later that it dawned on me that in order to handle matters of discipline in a child with autism, in my opinion, it was absolutely critical that child first have an understanding of "the rules"... and that these rules had to be spelled out in an easy to understand way (i.e., no hitting, no biting, no fighting, etc.). Of course, ideally, parents should be living by the same rules as they lead by example. It would indeed be difficult to teach a child that hitting is not acceptable if this is something the child sees going on regularly in the family (i.e., spouse abuse). What I'm saying here is not that I think you can not "slap a butt" if that is warranted. One of "the rules" in the Bible is that parents are "the boss" and that children have to listen to parents. This is something Zachary now understands. Being a Christian makes it easier for me to provide something to "refer back to" because I can tell Zachary that this is the way God wants things to be and that one day, when he'll be a dad, he can be "the boss" too... but, for now... God made him the child... and mommy and daddy are "the bosses". This has helped him to understand that each person in the family has "a role" ... and I think that is another critical piece to discipline... to teach "the roles" specifically... that parents are there to teach and discipline to help children become what they should be in life... and that children are there to be loved by their parents who care for them until they are "big people" and can care for themselves.
Sometimes, Zachary will say "I want to be alone"... and when he does... I give him "time alone"... I give him exactly what he wants. I understand the need to "chill out" even in children... and that at times, maybe they do need to be alone with their thoughts too... however, there also needs to be an understanding that if one asks to be alone, one needs to understand exactly what that means... If the request to be alone becomes an "I don't need you" issue, then, in my opinion, the child needs to see very quickly that they do need us... just as much as we need them...
For example, if ever I sense an "I want to be alone..." is a form of rebellion against me as opposed to something having to do with just needing time to think, then I may respond... "Are you sure you want to be alone?" If Zachary answers "yes", I may follow up with "Do you want to be alone or do you want mommy to go away?". If it is an "I want mommy to go away", then I make very sure he knows that this is not really what he wants by replying... "So... will Zachary make his own food and wash his own clothes all by himself?" He is still young enough that he can't use the stove... so, this still works for now... as he realizes he can't make his own food, etc. and he does need mom around. It doesn't take much for him to come around when the realization sets in that he does need me. Of course, ideally, the realization that "they need you" would be best if based on "love" alone... and that "needing love" is enough for needing someone else around.
So, I guess in closing here, what I am saying is that in order to have discipline, there must first be communication... and an understanding of the reason why one is being disciplined. Then, if the child can understand "right" vs "wrong" and can communicate well enough so that the parent knows that understanding is there, then, rules need to be specifically put in place... the rules must be specifically given/outlined in terms of what is acceptable and what is not... and the child must then understand that there will be consequences to unacceptable behavior or the "breaking of rules".
With no rules in place - and literally spelled out - how can a child possibly know "he has broken the rules" and that there are consequences to that. For children who "live via reference systems", in my opinion, it is critical that the rules be clearly spelled out/written out/taught, etc. And, obviously, the child also needs to understand that each person in the family has a role... that parents have a very specific role... and that children have a very specific role too... and that with "growing up", come more responsibilities. So, if a child wants to take on more of a "grown up role", they have to act "grown up"... they have to "follow the rules"... and then, more rewards will come. But, if rules can not be followed, then consequences should be expected too... and in my opinion, that means a little slap on the bottom too if that is warranted. I very, very rarely give Zachary a slap on the butt... but just the thought of one is enough to bring him in line when need be. As a Christian, the rules I live by come from the Bible (which by the way is where most laws come from too... don't lie, don't steal, don't kill, etc... all based in Bible principles) and as such, the rules I expect my children to live by are those of the Bible as well.. and there is plenty in there on "discipline of children" and "words of wisdom" for parents (i.e., Book of Proverbs).
Of course, these are just "my opinions"... based on my experiences with my own son and my beliefs...
For children in school systems, etc., rules need to be made clear in these settings, too... for both the child and the teacher. It is an unfortunate fact today, but many children are verbally abused by teachers in school... and thus... as is so often the case... those who are supposed to be there to help become part of the problem!
Each parent needs to decide for himself what is best for his or her child.... and what to "base the rules on"... and that can be challenging indeed... but bottom line... before there can be an understanding of the need for discipline, I truly believe there needs to first be an "understanding of the rules to live by"! Parents also need to have a clear understanding that they should set an example and live by the same rules, too.
Parents are to be an example to their children... and that requires self-control in matters of discipline. What your children see you saying and doing, in the end, is probably a reflection of the person you are as a parent...
You may also want to see what I had previously written in Book 3 under "Discipline and the Autistic".