Looking at behaviors

Coping skills for people with autism most often include ‘withdrawal from the fabric of social life’ and this also is reflected in the isolation that many families experience who are dealing with autism. For some, coping skills include isolating themselves from the demands of the world and tuning out the world with every ounce of their being. When they succeed in the most withdrawal possible, limit the incoming stimuli, develop ways to cope with the discomfort of their bodies and succeed in being left alone, many are able to entertain themselves endlessly. Some appear genuinely happy and self engaged in repetitive actions and as long as their expectations are met and the routine is unchanged the family may be able to cope. Yet most often parents are unable to accept that this is all that is possible for their child – more so when the child had previously developed language and was social before the onset of symptoms became obvious and increasingly severe. The ‘safe world’ that these children have created to cope with their autism may be far more comfortable then any we can offer, especially if the sufferings which they are experiencing are not addressed and treated, and the differences they experience are not identified and accommodated. We must have the same determination they have, to gather information, develop profiles and understand the people who have this condition before we can begin to effectively develop programs and therapies which are designed to help them overcome their ‘withdrawal’.

It is very overwhelming to accept that some of these individuals who were isolated but coping in ‘their world’ have been brought into programs and therapies by parents and professionals attempting to find the right therapy, right drug, right intervention that will somehow release their child from this invisible bondage, but instead led them to develop more dangerous, violent and aggressive strategies for being left alone. Others simply became more manipulative, or developed resentments that surface later.
Many of these children interact with their environment and with people in their environment on their own terms. Instead of isolating themselves and being self-entertaining, the child feels the strength and determination to explore and demand learning tools, entertainment objects, outings to their favorite fast-food outlets. Some experience the early excitement of control and use their experience to control their familiar environment more and more. Often they are able to transfer these skills to controlling other environments such as school and therapy settings. They often become experts at manipulation, especially when exposed to therapies which attempt to manipulate them.
To those living and working with children who are not interacting, who are lining up objects, tearing paper all day, touching the walls ritualistically, eating non-food items, emptying the contents of purses, stepping on toes, flipping the light switches on and off, touching personal objects and expensive equipment, touching people inappropriately, the response is naturally to want to spend less and less time with these children. Possibly there is a subconscious effect which has rippled through society. If I do not want to spend time with this child, then no one else would either. No one wants to be subjected to this kind of experience. No one should be expected to manage this type of child other than a trained professional. So professionals are called in, and sometimes the results are good, and many times the results are a failure or a worsening of behavior, but with nothing else on offer, where are parents to turn?

Some behavioral intervention programs fail because the behavior(s) which have been targeted are not behaviors, they are symptoms.
Some behavioral intervention programs fail because the child has not been adequately evaluated and he or she may be visually impaired, hearing impaired, have fine or gross motor deficits or medical conditions.
Some are experiencing pain, gastrointestinal discomfort, fungal overgrowth, vertigo, tinnitus, allergies, skin irritation, nerve pain, swelling, lip numbness, body numbness, headache. Illness and injury which may provide no real clues as to their presence in a population whose bodies process pain signals differently.
Some behavioral intervention programs fail because the therapist believes that if the child has demonstrated a skill previously then they should be able to repeat this skill when commanded to do so with the appropriate rewards in place. He does not consider that the child may not be able to perform on that day because they are experiencing symptoms which they were not experiencing when they successfully performed the task previously.
Some behavioral intervention programs fail because the repetition is boring and the child refuses to be involved in the repetition.
Some behavioral intervention programs fail because the therapist has not proven trustworthy to the child.
Some behavioral intervention programs fail because the reward scheme is insufficient to interest the child.
Some behavioral intervention programs fail because the consequence of refusal to participate is acceptable to the child.
Some behavioral intervention programs fail because the child has learned equally effective behavioral modification techniques and has applied them successfully to result in the end of the therapy.
Some behavioral intervention programs fail because the parents try to provide the program themselves and they have failed to integrate providing the program and maintaining the parenting role adequately.
Some behavioral intervention programs fail because the parents and family are disrupted by the cost, time involved or disagreement as to the value of the program.
Some behavioral intervention programs fail because the child has developed complex avoidance behavior which is sufficient to render the program ineffective.
Some behavioral intervention programs fail because the service provider to student ratio is not adequate.
Some behavioral intervention programs fail because the child is strongly affected by changes which are resulting from therapies and intensive interventions which are occurring at the same time.

The Desorgher Method - a holistic approach
The Desorgher Method is a holistic approach to bringing about emotional, spiritual, mental and physical well-being in people suffering under the condition of autism. It grew out of the Professional Parenting model known as ‘the Magic of the Family’, and has been most successfully used for those exhibiting the stresses and conflicts of adapting to a world where their condition is poorly understood and their survival has depended on developing coping strategies which have come to be labelled as ‘problem behaviors’. It can be adapted for uses in many settings and for a wide range of problems and age groups, wherever struggle and survival strategies are standing in the way of relationship, growth, fulfilment, health and happiness.

Simply, we are trying to find in ourselves the potential for accepting responsibilities which come with working and living with people who are not ordinary and have not had an ordinary life, people who may have very little or no emotional maturity, sometimes no guilt, no remorse, no culpability. Attempting to manipulate people who do not have emotional maturity, culpability or who have not been able to develop a sense of who they are will be unsuccessful.
When we offer ourselves, our help, our love unconditionally, without expectation, then we are not as fragile, not as likely to be upset or disappointed. Forming a relationship with unconditional love means that under every imaginable circumstance you are willing to accept responsibility for the well-being of the individual who needs unconditional love. They will experience in your care that their essential human needs are respected and accommodated. When they are in your care they will not suffer from unnecessary physical restraint, they will not fear for their safety, they will not be put in extreme conditions of cold or heat for which they have not been prepared, they will have food and water, rest and access to toileting facilities. When they are in your care they will be respected and protected.

It is a long journey through childhood and some are able to see themselves as others see them at an early age, others never reach this level of self-awareness. If you have never known what it is like to see clearly, hear properly, taste and smell without fear and experience loving touch then the tools for looking at yourself as others see you simply are not there. In order to help people with autism reach this level of development we first have to be able to see the world through their eyes, hear the world through their ears, feel as they feel, and acknowledge the food and feeding relationship of the individual as part of who they are. We might also need to realise that they are seeing, hearing and experiencing things beyond the range of ‘normal’ human experience.

If we cannot provide the kind of care and program which would be able to maintain staff to work directly with these children then they are destined to life in an institution. Many people feel ‘it is not my responsibility’ to develop community-based support for these children and their families and they do not want to accept this responsibility. We certainly have not seen many medical doctors demand their rights to treat these patients. Very recently, when the paradigm shifted towards the medical aspects and research forced medicine to begin to prepare for the change, some doctors began demanding education and resources but this change has not been fought from inside the medical community – it has been forced as parents whose children have been denied care shared information and created greater awareness, and as a result of doctors facing the challenge of parenting an autistic child themselves and who have worked to produce research findings showing the biomedical aspects of the condition to be consistent.

The combination approach of dietary and behavioral therapies are designed to effect powerful changes, and we have to watch intensely, 24 hours a day. As they experience changes to their eyes, ears, sensory experience, physical bodies they may be frightened. Some may feel more capable and able to assume control of their environment and others less capable. As they are ‘waking up’ from the most deeply withdrawn state of autism, how any one individual reacts depends on their circumstances, their attitude, what they experience and how others are responding also to the change. Of course having carers in place who have been through the process themselves or seen others go through the transformation is invaluable. Family members, especially siblings of autists who have experienced this process will be a tremendous asset to us in the future, as well as those who have experience of other transformational therapeutic programs.

Methods for applying behavioral intervention are based on the findings from the functional behavioral analysis and knowing the child. Look at his or her entire day. Determine when and where the problem behavior occurs. Target the most serious behavior(s) first. Set the child up for success. Separate symptoms from behaviors and this means the child must have all necessary medical and professional evaluations. The behavioral intervention must be modified and adapted instantly to meet the ever-changing needs of the individual. There must be consistent effort to instantly recognize symptoms or behaviors which are resulting from their experiences and attitudes about themselves and how they are coping with their physical and mental state in response to the current setting and demands. Frustration levels rise and fall continuously during any given day and during each activity or period of inactivity, so do hormone levels. The schedule must be in place and supply the child with visual information which identifies the next break, the next change and the time frame must be adjustable but consistent. Break down behavioral complexes to manageable goals and objectives for reducing and eliminating the most significant behaviors first. Meet the child’s basic human needs unconditionally, in a timely manner and work towards developing trust.

sojmed@gmail.com	World Community Autism Program
	Looking at behaviors Coping skills for people with autism most often include ‘withdrawal from the fabric of social life’ and this also is reflected in the isolation that many families experience who are dealing with autism. For some, coping skills include isolating themselves from the demands of the world and tuning out the world with every ounce of their being. When they succeed in the most withdrawal possible, limit the incoming stimuli, develop ways to cope with the discomfort of their bodies and succeed in being left alone, many are able to entertain themselves endlessly. Some appear genuinely happy and self engaged in repetitive actions and as long as their expectations are met and the routine is unchanged the family may be able to cope. Yet most often parents are unable to accept that this is all that is possible for their child – more so when the child had previously developed language and was social before the onset of symptoms became obvious and increasingly severe. The ‘safe world’ that these children have created to cope with their autism may be far more comfortable then any we can offer, especially if the sufferings which they are experiencing are not addressed and treated, and the differences they experience are not identified and accommodated. We must have the same determination they have, to gather information, develop profiles and understand the people who have this condition before we can begin to effectively develop programs and therapies which are designed to help them overcome their ‘withdrawal’. It is very overwhelming to accept that some of these individuals who were isolated but coping in ‘their world’ have been brought into programs and therapies by parents and professionals attempting to find the right therapy, right drug, right intervention that will somehow release their child from this invisible bondage, but instead led them to develop more dangerous, violent and aggressive strategies for being left alone. Others simply became more manipulative, or developed resentments that surface later. Many of these children interact with their environment and with people in their environment on their own terms. Instead of isolating themselves and being self-entertaining, the child feels the strength and determination to explore and demand learning tools, entertainment objects, outings to their favorite fast-food outlets. Some experience the early excitement of control and use their experience to control their familiar environment more and more. Often they are able to transfer these skills to controlling other environments such as school and therapy settings. They often become experts at manipulation, especially when exposed to therapies which attempt to manipulate them. To those living and working with children who are not interacting, who are lining up objects, tearing paper all day, touching the walls ritualistically, eating non-food items, emptying the contents of purses, stepping on toes, flipping the light switches on and off, touching personal objects and expensive equipment, touching people inappropriately, the response is naturally to want to spend less and less time with these children. Possibly there is a subconscious effect which has rippled through society. If I do not want to spend time with this child, then no one else would either. No one wants to be subjected to this kind of experience. No one should be expected to manage this type of child other than a trained professional. So professionals are called in, and sometimes the results are good, and many times the results are a failure or a worsening of behavior, but with nothing else on offer, where are parents to turn? Why programs fail Some behavioral intervention programs fail because the behavior(s) which have been targeted are not behaviors, they are symptoms. Some behavioral intervention programs fail because the child has not been adequately evaluated and he or she may be visually impaired, hearing impaired, have fine or gross motor deficits or medical conditions. Some are experiencing pain, gastrointestinal discomfort, fungal overgrowth, vertigo, tinnitus, allergies, skin irritation, nerve pain, swelling, lip numbness, body numbness, headache. Illness and injury which may provide no real clues as to their presence in a population whose bodies process pain signals differently. Some behavioral intervention programs fail because the therapist believes that if the child has demonstrated a skill previously then they should be able to repeat this skill when commanded to do so with the appropriate rewards in place. He does not consider that the child may not be able to perform on that day because they are experiencing symptoms which they were not experiencing when they successfully performed the task previously. Some behavioral intervention programs fail because the repetition is boring and the child refuses to be involved in the repetition. Some behavioral intervention programs fail because the therapist has not proven trustworthy to the child. Some behavioral intervention programs fail because the reward scheme is insufficient to interest the child. Some behavioral intervention programs fail because the consequence of refusal to participate is acceptable to the child. Some behavioral intervention programs fail because the child has learned equally effective behavioral modification techniques and has applied them successfully to result in the end of the therapy. Some behavioral intervention programs fail because the parents try to provide the program themselves and they have failed to integrate providing the program and maintaining the parenting role adequately. Some behavioral intervention programs fail because the parents and family are disrupted by the cost, time involved or disagreement as to the value of the program. Some behavioral intervention programs fail because the child has developed complex avoidance behavior which is sufficient to render the program ineffective. Some behavioral intervention programs fail because the service provider to student ratio is not adequate. Some behavioral intervention programs fail because the child is strongly affected by changes which are resulting from therapies and intensive interventions which are occurring at the same time. The Desorgher Method - a holistic approach The Desorgher Method is a holistic approach to bringing about emotional, spiritual, mental and physical well-being in people suffering under the condition of autism. It grew out of the Professional Parenting model known as ‘the Magic of the Family’, and has been most successfully used for those exhibiting the stresses and conflicts of adapting to a world where their condition is poorly understood and their survival has depended on developing coping strategies which have come to be labelled as ‘problem behaviors’. It can be adapted for uses in many settings and for a wide range of problems and age groups, wherever struggle and survival strategies are standing in the way of relationship, growth, fulfilment, health and happiness. The Desorgher Method uses the following tools: Unconditional Love Ethnomethodology – Teaching individuals with autism how to ‘join the tribe’ by joining theirs Functional Behavioral Analysis and method of application Setting the child up for success Symptom or behavior? Breaking down behavioral complexes Meeting the child’s needs (re. Maslow) Keep it simple – identify what the child likes and dislikes Re-framing (replacing negative experiences and associations with positive experiences and associations) Identify problem behavior(s) to be targeted – not working on too many things at once Limiting unnecessary verbalization to focus on what is important Role modeling Describing behaviors Tracking Coping skills for the carer – Don’t take it personally Dealing with guilt overload Peer Role Models Overkill Expectations Increasing participation How to achieve compliance – Pre-teaching, rewards and consequences Schedule Goals and objectives – Short term, long term Results Simply, we are trying to find in ourselves the potential for accepting responsibilities which come with working and living with people who are not ordinary and have not had an ordinary life, people who may have very little or no emotional maturity, sometimes no guilt, no remorse, no culpability. Attempting to manipulate people who do not have emotional maturity, culpability or who have not been able to develop a sense of who they are will be unsuccessful. When we offer ourselves, our help, our love unconditionally, without expectation, then we are not as fragile, not as likely to be upset or disappointed. Forming a relationship with unconditional love means that under every imaginable circumstance you are willing to accept responsibility for the well-being of the individual who needs unconditional love. They will experience in your care that their essential human needs are respected and accommodated. When they are in your care they will not suffer from unnecessary physical restraint, they will not fear for their safety, they will not be put in extreme conditions of cold or heat for which they have not been prepared, they will have food and water, rest and access to toileting facilities. When they are in your care they will be respected and protected. It is a long journey through childhood and some are able to see themselves as others see them at an early age, others never reach this level of self-awareness. If you have never known what it is like to see clearly, hear properly, taste and smell without fear and experience loving touch then the tools for looking at yourself as others see you simply are not there. In order to help people with autism reach this level of development we first have to be able to see the world through their eyes, hear the world through their ears, feel as they feel, and acknowledge the food and feeding relationship of the individual as part of who they are. We might also need to realise that they are seeing, hearing and experiencing things beyond the range of ‘normal’ human experience. If we cannot provide the kind of care and program which would be able to maintain staff to work directly with these children then they are destined to life in an institution. Many people feel ‘it is not my responsibility’ to develop community-based support for these children and their families and they do not want to accept this responsibility. We certainly have not seen many medical doctors demand their rights to treat these patients. Very recently, when the paradigm shifted towards the medical aspects and research forced medicine to begin to prepare for the change, some doctors began demanding education and resources but this change has not been fought from inside the medical community – it has been forced as parents whose children have been denied care shared information and created greater awareness, and as a result of doctors facing the challenge of parenting an autistic child themselves and who have worked to produce research findings showing the biomedical aspects of the condition to be consistent. The combined approach The combination approach of dietary and behavioral therapies are designed to effect powerful changes, and we have to watch intensely, 24 hours a day. As they experience changes to their eyes, ears, sensory experience, physical bodies they may be frightened. Some may feel more capable and able to assume control of their environment and others less capable. As they are ‘waking up’ from the most deeply withdrawn state of autism, how any one individual reacts depends on their circumstances, their attitude, what they experience and how others are responding also to the change. Of course having carers in place who have been through the process themselves or seen others go through the transformation is invaluable. Family members, especially siblings of autists who have experienced this process will be a tremendous asset to us in the future, as well as those who have experience of other transformational therapeutic programs. Methods for applying behavioral intervention are based on the findings from the functional behavioral analysis and knowing the child. Look at his or her entire day. Determine when and where the problem behavior occurs. Target the most serious behavior(s) first. Set the child up for success. Separate symptoms from behaviors and this means the child must have all necessary medical and professional evaluations. The behavioral intervention must be modified and adapted instantly to meet the ever-changing needs of the individual. There must be consistent effort to instantly recognize symptoms or behaviors which are resulting from their experiences and attitudes about themselves and how they are coping with their physical and mental state in response to the current setting and demands. Frustration levels rise and fall continuously during any given day and during each activity or period of inactivity, so do hormone levels. The schedule must be in place and supply the child with visual information which identifies the next break, the next change and the time frame must be adjustable but consistent. Break down behavioral complexes to manageable goals and objectives for reducing and eliminating the most significant behaviors first. Meet the child’s basic human needs unconditionally, in a timely manner and work towards developing trust.
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