| Educational Treatment & Family Support for Children with Autism -Support and understanding of children with autism from their perspective and point of view- Previous Executive Director of Awaji Kodomoen, Takahiko Iwasaki (Executive Director of Himejima Kodomoen) | |
| Table of Contents Introduction 1．Basic Principle of our Support 2．Support for the Difficulties and Problems that Parents and Families Face 3．Staff Requirements -their Roles and Responsibilities 4．Building Fundamental Human Relationships and the Growth of Parents |
| Introduction It seems that the necessity of early detection and early educational treatment for autism has been clarified, and nursing during infancy has developed. On the other hand, voices pleading difficulties and worries: “How can we communicate with our children?” and “Is it really necessary to have special treatment or training?” from parents has been increasing. In addition, some young adults and adults who finished school education or over the school age fall into severe behavioral disorders such as self-injury, aggressive behaviors toward others, strong stubｂornness, and emotional instability and therefore have difficulties living in the community. Some parents start to think, “We cannot continue living with them anymore.” or “We have to put them into residential care.” because of anxieties for their child’s future. Many people, including specialists, have been involved with the child since they were little. Despite this, why have such difficult situations been occurring? The questions is how to keep consistency in the way we support children in each stage of their lives and throughout their lives. Have the persons involved consistencyly supported those children who cannot express their will and feelings well, towards a comfortable life? Have the persons involved understood and supported the family in the difficult situation fully? The people involved have a great responsibility towards the individual and their family, because they are directly involved in their lives. We believe that it is necessary to take these questions seriously and review our qualifications and skills as staff. |
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| 1．Basic Principle of our Support ①Respecting their individual initiative, dignity and self-esteem as a human-being The individual is one of a kind, with their own intentions and feelings, despite any disabilities. Children with autism are sometimes seen as a “special existence” who cannot identify with our feelings. It is difficult for them to express their intentions, demands and emotions well through their facial expressions, gestures, and words. However, when we spend time with the individual every day, we can see that they have wishes and intentions in the same as us and that they can communicate with us even though we don’t understand everything about them. They are sensitive to how they are accepted by the people around them, and are constantly looking for people who can understand them. We think that the ideas of “overcoming disabilities” or “improving abilities” are narrow in their approach. Therefore it is important to respect their dignity as human beings and support them in developing their self-esteem so that they are able to live fullfilling lives. In order to realize this, (unfortunately, the current situation is not set up in this way), it is necessary to create a system that provides support while respecting the individual’s independence from infancy, to adolescence and adulthood with the cooperation with everyone involved. ②Support and understanding of children with autism from their perspective (→See Fig. 1) It's easy to fall into a trap of thinking “The child acts in such a way, because they are autistic.” or treat a child with autism as an object of training. If you treat problems such as strong persistence, self-injury or communication, as just “one characteristic or symptom”, it becomes difficult to see what is most important -the individual's desires and feelings. Though from an outsiders' perspective it may look like “problematic behaviors”, these actions are the children's best way of expressing their intentions and feelings, and so there are surely reasons why they must behave in this way. First and foremost, staff must be sensitive to the real intentions and feelings behind those behaviors. For example, there is a child who is fixated on the roation of a vent fan. If there is a person next to the child explaining “This child has autism, so they are obsessed by things turning”, this person will never be able to provide good understanding or supporter for children with autism. Children are sensitive to the arrogant attitudes of observers and won’t express their feelings openly to those people. From their expressions and attitude, these behaviors can be seen as a way of reducing their anger and frustration. We can deduce that in the background, there may be some disagreeable experiences or where things hadn’t gone the way that they wanted. While searching for the cause, we need to support children so that they can express their intentions and feelings better. We can also help children to calm themselves down by empathizing with them and accepting their anger and frustration. (Note 1) We should create a way of support for the individual so that they can act with confidence and motivation that is based on a sense of security and a sense of trust toward people. We should not try to solve problematic behaviors somehow or make them fit within the adult’s wishes under the guise of treatment and training.
③Introduction of developmental psychological and related views (→See Fig. 1) Through the adults that are nearby in everyday life children feel a sense of security and satisfaction by satisfying their demands and riducing dissatisfaction and anxieties. Basic human relationships are built on the accumulation of these experiences, cultivating children’s self-esteem and self-belief (confidence). For some reason, it is difficult for children with autism to express their feelings . Therefore, their various feelings of pleasure and displeasure and intentions, are difficult for surrounding people to understand accurately. Consequently, they have less experience of their demands being satisfied and their dissatisfaction being reduced. For that reason, when children face difficulties, they are unable to complain about the situation to adults and have to suffer anxiety and dissatisfaction by themselves. These weaknesses appear as hardly understandable acts; acting emotional and irritable, avoiding situations, being obsessed with a particular thing, self-injury, and taking things out on others. Therefore, at first, adults around these children try to understand their real intentions and feelings through their weak expressions and subtle signs and the change in their behaviors. (Note 2) Next, adults need to support them so they feel “They understand!” through their communication. It is very important to encourage these children to express their needs and motivations, “I want them (the adults) to understand me more!” or “I want to communicate with them (the adults)!” It is especially important to build a relationship which can give a sense of safety and security to children by appealing to adults close by. In the meantime, children should not endure anxiety and displeasure. (Called “Forming Basic Human Relationships” in developmental psychology.) Children with autism learn basic skills of communication such as expressing their feelings, using gestures and words or mimicking voluntarily when the basic human relationship with an adult close by is built up. They also start to deepen their understanding of the meaning of things and its relationship with other things in daily life. (Called “Socialization of Cognition”.) In addtion to this change, autistic behaviors will surely decrease.
④The importance of understanding the individual within relationships and the necessity of adjusting relationships. (→See Fig. 2) ●The “Watching and being watched” relationship We need to consider human relationships as a “Watching and being watched” two way street. A child is watching the staff's attitude, their perspective and their dispotion in the same way that the staff is watching the child. If staff’s attitude is highhanded and arrogant, and the staff continues to order children around, “making” them do something or understand something”, the children will be intimidated and dependent, or on the contrary, react sharply against the staff. On the other hand, if the staff tries to understand children positively and gain a sense of trust, children will become reassured and start to want to be understood and communicate their feelings to them. If the staff doesn’t realize this mutual relationship and observes only the children’s behaviors as they are, the understanding of these children becomes one-sided. (Note 3)
●Understanding and making adjustments within relationships Previously, treatment, nursing and training had been geared exclusively to the individual, but this is now being reviewed as it is too much pressure for the individual. In reality, the individual receives a lot of influence from the people in their lives. We believe that the complicated behaviors of people with autism and severe behavioral disorders are not inherent disabilities. These behaviors correlate with the individual’s condition and the understanding and communication of the people around them. Therefore, it is not enough to just watch the individual in order to understand fully the meaning of their behaviors. It is very important to look at the whole picture of the individual’s life and understand the relationship between the individual and people at their school, daycare center, and neighborhood. Then we need to support the adjustment of the individual’s relationship with the people around them in order for them to not feel anxious. (Note 4)
⑤The difficulties the mothers and families face, and related support For children, home is a basis of community life. It is very important for children’s growth that their home life is stable. However, not enough support or consult with mothers and families for their difficulties and problems is provided, because nursing, educating and supporting the children lie at the core of our jobs at kindergartens, daycare centers and schools. In fact, it has to be said that the difficulties and problems mothers face is much bigger than we can imagine. These are examples of some difficulties and problems, -all of them very serious: emotional shock from a diagnosis of delay in child development or autism, remorse that “It might be that my way of raising my child was bad.” or “This is my fault.”, frustration that “I have to work hard to improve this somehow.”, everyday struggles focused on a child with disabilities, and difficulties raising the individual and their siblings in a balanced way, excessive patience by the sibling, difficulties forming collaborative relationships between mother and father, conflict with grandparents, and the pain due to lack of understanding from neighbors. These difficulties and problems blend together and become a big burden to mothers. It can affect children directly or indirectly. Accordingly, it is essential to listen to the mother’s problems and difficulties and support them in stabilizing. At the same time we need to support families so that they can understand the feelings of children with autism and build good family or parent-child relationships. Unfortunately, this system of support and consultation is not enough at this point. | ||||||||||
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| 2．Support for the difficulties and problems parents and families face ①Emotional support for mothers There are many opinions about the causes of autism, with extremities such as “It is the parents’ fault.” or “It is a brain disorder”. We are also flooded with various kinds of techniques and training methods for support. Among these options, parents are worried “Does my child need special treatment or training?”, “What kind of method is the most effective?” or “What is the difference between these methods?” Therefore those parents lack confidence about raising children and live with great trepidation every day. With concerns about future prospects, “My child should be able to say words by the age of 3”, “We have to do something for our child before she enters school.” or “We have to be strict with our child so that they can support themselves in the future.” Their tendency to seek special training by a specialist becomes stronger. (This kind of frustration and excessive dependence on specialists is not just the parents' fault. The support structure for each life stage: infancy, school-age, adolescence and adulthood, is inconsistent and varying. Therefore it’s not an exaggeration to say that current problems reflect this inconsistency.) When a mother worries alone, she becomes increasingly stressed and has little room to breathe. In fact, she looks at her child less and doesn't notice subtle signs, and is harsher with the child that bothers her. The child in turn feels conflict towards the mother, becoming unstable and worsening the parent-child relationship. In addition, the familial relationship becomes difficult and increases the strain on everyday life. Therefore we emphasize mental support for mothers in parallel to education for children. We listen to mothers’ difficulties and anxieties and provide an opportunity to think about those issues together. Mothers can be more relaxed or take the initiative in solving problems they face through talking about difficulties and anxieties, not only with the staff but also with other parents who are in the same position, giving them peace of mind. Children are sure to gain emotional stability and a sense of security due to the change they sense in their mothers. ②Supporting mothers in communicating with their child so that they can live as a member of the family There are many cases in which mothers and families who are living with their child cannot understand their feelings. There are endless questions and difficulties： ・The child doesn’t turn around, even their family calls them. ・The child tends to play alone. ・The child isn’t happy, even when their family invites them to do something together. ・The child avoids eye contact with their family. ・The child is always doing the same thing and doesn’t seem to be interested in other things. ・The child cannot express with words. ・The child cries out when they cannot get what they want. ・Self-injury ・Aggressive behavior ・The child only does something to pester their parents. Mothers and families are worried, because they don’t know how to understand and react to those behaviors. The mothers’ weariness of mind and body and fear about the future increase, because they cannot communicate with their child well. Parents ｃａｎｎｏｔ consider things from the point of view of their children, when there are various immdediate difficulties and problems at home that they must deal with, as described previously. In this way, the child appears to their parents as a negative existence: “The child who cannot do so and so.” or “The troublesome child who pesters their parents and causes bother.” However, when we listen carefully to the mother’s side of the story, we understand that she feels frustrated and that the inability to communicate with her child is painful, and that she wants to build a good parent-child relationship and strong family relationships. One of the most important objectives of our support is that mothers who are in tense difficult situations, come to understand their child’s feelings “Oh, my child thought in this way.” or “Now I understand my child’s difficulties.”, and then be able to have a good family lifestyle, feeling “I'm glad I can live together with my child.” On parent-child attendance day, we study and discuss how to understand and react to so-called problematic and complicated behaviors, but it is not enough to understand them just with our heads. Therefore staff try to help parents to understand what the child is wanting, feeling, and struggling with from their expressions, gestures and behaviors through being involved in daily activities such as playing, eating, toileting with the child at the actual nursery site while respecting the child’s interests and feelings. The staff work as a mediator. They point out the gap of feelings between the feelings of the child and their parents and support them in communicating well each other. The staff also learn many things from the mothers. On site, the staff and mothers go through every aspect of the child's problems and difficulties; ・How can we understand the child’s persistence? ・What kind of attention does the mother need in order to be necessary to the child? ・What kind of attention do adults need to give for the child who is noticeably moving around by themselves, so that they can communicate their needs to the adults? ・What kind of support is necessary when the child faces difficulties? ・Processes and support should be available to the child so that they are able to express themselves. ・What attention is needed for the problems and difficulties within sibling relationships? In order to solve these problems, it is important to build a trusting relationship by learning and co-operating with each other, requiring the ability of each individual and the ability as a team. The trust and good feedback that parents earn from their hard work on the child-parent day is invaluable for their future child-raising. And it will certainly be useful in future interactions with other people (teachers and school-related people, people in the community, and friends), when the need to discuss their child in order for them to be understood better, or the need to protect their human rights arises. On the other hand, if parents try to cope with their child in a superficial way, relying only on special treatment, training, nursing-care and education, they will not be able to express this actual feeling and feedback. As a result, it will be difficult to overcome future difficulties as a family. Therefore, there is a possibility that parents might be forced to make unwilling choices, because of loss of confidence, “We cannot raise our child by ourselves anymore.” or “We cannot live without using a residential care home.” ③Guidance and advice by a specialist Specialists often give advice to mothers by looking only at the child or the child and the mother as a pair, without knowing the family’s particular situation or difficulties. Though it depends on the guidance and advice, if the mother focuses all her effort on the child with the disability, the family lifestyle ends up suffering. There is a possibility of a large strain on family relationships: the siblings having to endure too much or creating marital tensions. In the case of the training and advice not matching the child’s development, ignoring or not valuing their will and feelings and just focusing on supportive measures, or following them devotedly, can ruin the precious child-parent relationship. If a child is strongly encouraged to join a group such as a daycare center or kindergarten when they start to become demanding of their mother, the child's confusion from this separation increases and the child-parent relationship can sometimes become worse: ignoring the mother when she is leaving the daycare center or kindergarten and trying to say good-bye or not approaching the mother when she comes for pick-up. If parents are too focused on the advice, they don't notice when the child gives various signals such as becoming unsettled or reluctant, and the added burden on the child. The people involved need to be aware of these actual conditions and take responsibility for their advice. |
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| 3．Staff Requirements ～their Roles and Responsibilities ①Building a trusting relationship with children Above all, staff are required to be liked and needed by the children. Furthermore, an attitude of acceptance of the child as they are, and sensitivity towards and understanding of their feelings is a requirement. They need to try to understand the child’s will, interests and feelings from their behavior and subtle signals and help them with what they are doing or do together what pleases them. Parents feel reassured leaving their child with someone else when they see a good relationship between the staff and their child. Then parents’ burdening sense of, “I have to try harder!” will then be reduced, and they will be newly inspired by the relationship between the staff and their child, allowing them to possibly reconsider their whole child-parent relationship. ②The importance of understanding children and supporting them, over training Training and guidance to “Make them do something” is a dominant and arrogant attitude towards children that will create dependency by using adults power and techniques. If staff are too firm in thinking “I have to train the child.”, they don’t see the child expressing reluctancy in various ways (Note 5), because they are focused too much on whether they can respond as expected or follow instructions. Or, they become insensitive to the fact that accepting the child’s feelings has a great significance to on their lives and development. If staff place value only on whether the child did the assignment without taking into account their satisfaction, their strain and anger will gradually accumulate. As a result, there is plenty of risk that this strain and anger will appear as severe behavioral disorders in the future. Therefore, staff are required to make a proper judgment as to whether the child is satisfied or not and treat them as a person rather than an object of training and guidance and support them to achieve self-fulfillment.
③As an adult, realizing that we are being watched by children in the “Watchers-being-watched”relationship. It is important for staff to understand how other people see them and reconsider their own attitude and relationships from other people's point of view. In particular, adult staff should not forget they always have control and influence over children. There is a strong possibility that adult staff control the child’s small wishes through the use of power and superiority, resulting in the child losing their independence and being placed in a subordinate position. It is necessary to have feedback and supervision from a third party in order to judge whether the support is really best for the child's sake. Even though staff try to work hard for the child, if they cannot view the support objectively, they tend to feel defensive. Therefore staff need to become more aware and should openly listen to other people’s opinions and suggestions, including the child’s parents. ④Building a trusting relationship with parents The ideal is for staff to have a partnership with their parents, where they offer mutual support to the child. If the staff’s attitude towards the parents is arrogant and they think “I will teach parents.” or “I will instruct them.” , it becomes difficult to build a trusting relationship. Staff have to always keep in mind that the parents who leave their child in their care are in a vulnerable position. Staff should first and foremost listen to parents’ problems and difficulties, and come up with solutions and idea towards relief together. They also need to support and give specific advice to parents at the nursery center in order to build a relationship in which the parents and their child can communicate better. In any case, how staff can give good support depends on whether they can build a trusting relationship with the parents. When good human relationships are built, staff can give advice and support on points unnoticed by the parents who in turn will find it easier to be relaxed in conversation with the staff. With improved relationships between the child and the parents and staff, the image of the parents and staff will improve, and children can develop better interpersonal relationships. ⑤Importance of teamwork among the staff It is difficult for one member of staff to fully grasp the child as a whole. A member of staff alone tends to misunderstand the child’s feelings or see only one part of them and not be able to make proper judgements. Staff should combine their wisdom and openly exchange information and opinions with each other. They then need to understand the whole child as much as is possible. (In reality, cooperation between the staff is not always smooth because of refrain and sparing of other people's feelings. However, they should not forget that good teamwork directly impacts the child’s situation.) | ||||
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| 4．Building basic human relationships and the growth of parents It takes time for children with autism to need their parents and staff. However, when basic human relationships develop, a definite positive change in the child’s behaviors can be seen as a result. For example, if a child is with a person whom they can trust, they voluntarily pick up information around them through that relationship. The child can better understand ways of communicating including through language, way of using things, and the relations and meanings of the things around them through this relationship. Self-sufficiency and self-control are gradually developed through the relationship with this person . At first, the mother is confused and anxious: “Why does my child only do things to pester me.” “We should not bother other people.” “I have to discipline my child now for their future.” and “Perhaps my child doesn't recognize us as parents.” However, through child-parent attendance mothers can start to gain an understanding of what lies behind these complex behaviors and feelings with some bumps in the road: with occasional upsets or miscommunication but also joy in discovering an understanding of the child’s feelings. Even if the child's ability and human relations is weak and the progress might be slow, there will be a positive outcome, with the mother reflecting: “It was good for us to take part in child-parent attendance together.” “My child understands things well.” and “I feel affection for my child.” In addition, with regards to the older sibling, the mother is able to consider, “I felt my older child needed more discipline, but they also wanted to be treated similarly to their siblings. (The child with autism)”, “When I listened properly to my older child, their mood improved.” and “My older child became kinder to their sibling.” At the center, we have built a system where consultation is available even after graduation, according to the parents' needs, and support is provided to connect the senior and junior parents. There will always be problems and difficulties in child raising. However, we feel parents can live their daily lives with a sense of reassurance “We can work it out if we consult the center when something happens.” and “I want to continue living in a community” despite not being able to completely dispel their frustrations and anxieties for the future. |
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| ※This article is a part-revised version of the document presented at the “Practice of Autism ～ Humanity and valued Educational Treatment: Creation of Educational Treatment in the Field of Institution” 17th Seminar for the Practical and Educational Treatment for Autism. (August 23rd , 2000) 【Bibliography】
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