PSYCHOLOGICALLY ASSISTING THE FAMILY OF THE CHILD WITH ASD

Transcription

1 ANTON et al. STATE OF THE ART PSYCHOLOGICALLY ASSISTING THE FAMILY OF THE CHILD WITH ASD Simona MARICA * Spiru Haret University, Bucharest, Romania ABSTRACT Disorders within the field of autism represent some of the most serious neuropsychiatric disorders of childhood. The condition of the child becomes an important element of stress for the home system he/she is part of. The article herewith aims at emphasizing the role of the psychologist in counselling the child diagnosed with ASD and in forming the support groups for his/her parents. Keywords: disorder from the field of autism, family system, stress, counselling, support group. THE FAMILY AS A SYSTEM Most articles on ASD are focused on the child, on the early evaluation of his development, of the symptoms list, evolution, prognostic and therapeutic action. This is perfectly normal, as the child is the one whose atypical development triggers worries and whose development issues need to be solved. What I am going to state next is not something that nobody has ever heard of: family is a system, a set of elements being in interaction. That is why the totality is affected once any of its elements is suffering. The state of the child with ASD represents a major factor of stress, disrupting the dynamics of the system; in return, the stress of the parents will unfavourably reflect upon the child. Disorders in the filed of autism are not diseases, therefore we will not be able to talk about remission in this case. Recovery in various states will be a long term process, whose success depends on a number of factors, among which: the child s IQ, the use of language with communication function (from 5 years onwards), the early existence of the ability of constructive gaming, the harmonious and emphatic family relationship [1]. Corresponding Author: Simona Marica, PhD Univ. lecturer, Spiru Haret University, Bucharest, Romania, Member of ANCAAR. marica.simona@yahoo.com THE NECESSITY OF PSYCHOLOGICAL ASSISTANCE The parents of the child with ASD need support for several reasons, among which: The fact that their wellness, the balance of the couple and of the family as a system represent essential elements for the success of the therapeutic process; they become the important link in the recovery process of the child, having to keep it ongoing and to achieve one of its most relevant stages: generalization; In the next chapter/part, I suggest to carefully examine the existential situation of these families. THE SPECIFIC OF THE FAMILY WITH A CHILD DIAGNOSED WITH ASD First of all, the parents are overwhelmed with the seriousness of the diagnosis. For most of them, this is equivalent to a conviction: their child would never be able to develop as the others, to understand them or to be affectionate in return. These present worries are increased by the uncertainty related to the future of the child, to his ability to integrate in the normal educational system or not, to choose a profession, to form a family, to live like an independent adult After finding out the diagnosis, parents have to make a serious number of major Volume 2, Issue 1, Ianuary-June, 2014

2 Simona MARICA decisions, under time pressure: whom to address to? What kind of therapy to choose? How to build a therapeutic team? How to develop themselves? (if money is not enough to pay therapists) etc. The daily stress to which this family is subject to should not be neglected: the child, even he has speech knowledge, does not use it in a functional way, communication being severely affected. Due to his inability of making himself understood, the autistic child will have episodes of tantrum, caused by frustration. The more recurrent most of the crises in public are, the more serious the situation gets. The child screams and rolls on the floor and the parent is blamed by the audience (a parent told me that he had spent several hours at the appliances department in the supermarket, so that his son would open and close the doors of the exhibited refrigerators and he would not leave until he got bored; otherwise, he was having real crises of fury)[2,3]. The child with ASD can have all sorts of sensorial sensitivities (he can t stand certain sounds, images or materials), intolerance to food or strange tastes, certain routines (he only goes on a certain way, he only wears a certain T-shirt, he does not go to bed unless he puts his toys in a straight line or if the place of an object in the bedroom is changed). Sleeping problems should not be neglected either: some children have a reversed nychtemeral rhythm; others sleep extremely little, thus making their parents exhausted. The parent experiences, at the same time, pity, seeing his child evolving in this way; helplessness, as most of his attempts to relax this child are meant to fail; frustration, because nothing goes smoothly; anger, sometimes in the presence of the child and also towards the existing situation; and guilt. Many people wonder if they are guilty for the child s disorder or if they might do something more and better, if they could be more patient and understanding with the child (a mother was blaming herself for having raised the voice to her child, 3 hours after she had uselessly tried to put him to bed). Of course, the family dynamics is different from one case to another. In some families there are typical children and here appear the problems concerning the relations between brothers and the parent s feeling of abandoning the typical one in favour of the one with problems. Some brothers feel marginalized, when noticing that all the adults in the family are focused on the autistic child (the 9 year old brother of such a child had become apathetic, although he was not neglected; but he could see that therapists were coming to the little one every day, that he was being sung songs and was engaged in playing games, he was encouraged for any small progress). In other families, the child with ASD is a single one and it occurs many times that the parents develop a real obsession for this child and his recovery. Another problem the family faces is stigmatization, the refusal of accepting the child in the groups of typical children, the refusal of other parents to leave their children around the autistic child (a mother was telling that although she had hired a shadow for her child, 3 private kindergartens had refused her on the grounds that they could not allow the access of the adult together with the child)[4]. Once the therapy starts, the financial effort these parents are going to be subject to is not to be neglected: the cost of one hour of therapy in our city varies from 20 to 35 Ron and the number of therapy hours needed on a weekly basis is between 20 and 40. We add to these the materials they work with (if we are referring to Centres, the children are being provided with the necessary school supplies). In the end, it has to be also mentioned that home therapy convenient from many points of view can even mean the destruction of privacy, as two or three foreign people, who are part of the therapy team, come to the house every day and they might stay there between 4 and 8 hours a day for several months or even years. As a consequence, the family will experience a dramatic change of the life style: they will sometimes give up their jobs, the spare time activities, their hobbies or some friendships. All these issues represent we believe serious arguments for the psychological support offered to the family; it can cover at least two aspects: family counselling and forming support groups for their members. Romanian Journal of Child and Adolescent Psychiatry

3 Psychologically assisting the family of the child with ASD THE ROLE OF COUNSELLING In the counselling process, the supportive relationship is one by which the counsellor offers support to the client for the benefit of change, This type of relation is mostly focused on the affective side rather than on the cognitive one. It consists of exploring sensations and experiences. It is characterized by practicing the whole affective ambitus of the client: the alternation of comfort with anxiety, of exaltation with depression [5]. From our point of view, the role of counselling is a vital one and we will give details herewith on the aspects it should be focused on. Within the counselling process, the family s resources should be carefully evaluated: how the parents refer to their child and his disorder, who might have the power in the family, who makes the decisions, are there any brothers/sisters and what is the relationship with them, what is the role of extended family and how can it help? What are the time and financial resources of the family? Any solution needs to be found together with the family and adapted to its possibilities. Unrealistic ones will only add frustration where there is already enough of it. First of all, after finding out the diagnosis, the parent needs to receive emotional support; he needs to realize that although he is dealing with a serious problem, there are hopes of recovery. It is all about the attempt to change the parent s mindset; he usually comes to the psychologist s office with his own prejudices and myths regarding autism. As long as he believes that nothing can be done for the child receiving this diagnosis, then therapy will fail. The opposite attitude is as damaging as the previous one: believing that therapy ahs the effect of a miraculous medicine, the child being about to be cured of autism. This attitude will prove to be damaging at the moment the progress will be too slow and the disappointed family will wish to give up. The parent needs to be warned that no therapy has immediate effects and the process they are committing to is a long term one. The evaluation of its efficiency will be made in time, depending on the results the child has, on the rhythm of his acquisitions. Our attempt is also focused on eliminating guilt, most parents considering that they are guilty for the condition of their child; such a mindset will not help them to cope better with the situation. Those parents who do not seem able to accept the diagnosis of autism should not be forced to do so but they may get counselling in order to accept, in the end, a form of therapy to help their child, even if we are dealing with an autistic spectrum disorder or not (a parent who did not want to accept the diagnosis of autism given to his son went from consultation to consultation, thus losing precious time, until a specialist told him he is dealing with a pervasive disorder of development; he might accept this more easily and he started, thus, doing therapy). Secondly, the parent needs to receive information about this disorder and its symptoms; undoubtedly, one of the most important information that needs to be given to the families is that related to behaviour problems and the way of managing them. Parents are often confronted with a high level of stress, because they do not understand the behaviour of their children. Specialists can do a lot of things to decrease the difficulties of the families by sharing information about the symptoms of the disorder and about the strategies that can be used for reducing the number of problematic behaviour; for example, the child s crises of fury, seen as manifestations of frustration and sometimes, of the anxiety towards the changes of the environment do not seem as scary as when they appear not to have any explanation. Given its efficiency, information also needs to be shared to the types of existing therapies; even a list of the Centres or specialists they can turn to in order to discuss and individualized plan of treatment. It is even more important to check the information, as a desperate parent can easily become the victim of some semi-specialists who promise miraculous healing. The parent needs to understand that, although it is not easy, he will have to try to put his child to as many experiences as possible, to the natural environment, to the interaction with Volume 1, Issue 1, January June, 2013

4 Simona MARICA other children who are able to show them patterns of behaviour (it is known that imitation is poor in the case of autistic children and it does not appear spontaneously). There are parents who, out of embarrassment, do not allow their children to make friends anymore, do not invite anybody to their place anymore and stop going out with the sick child (treated as being sick). Last but not least, the family needs to realize that the energy of the child, his wellness is directly connected to the wellness, the harmony and equilibrium of his family. Parents need a little time for themselves, for the activities they enjoy, for the couple, generally speaking. Parents who are permanently stressed, tired, depressed, who forget to enjoy the good things the child does and his small progress, a furious atmosphere and a continuous pressure related to his acquisitions cannot have a good influence on the child. FORMING SUPPORT GROUPS Another way to help the families is the one of forming support groups for the parents of children with ASD. In other countries, there is already a tradition of the support groups for a various range of problems (alcohol, gambling addiction, different types of loss etc). In our country, the initiatives are too little and regarded with cautiousness. When asking the subjects about the reasons of their sceptical attitude towards the support groups, we realized that it was all about ignorance and embarrassment. Parents do not understand the concept of support group, they do not accept the fact that it is them who have a problem and they do not want to discuss in public about issues related to the privacy of their family. THERAPEUTIC FACTORS IN SUPPORT GROUPS In many cases, it is in the power of specialists to make the parents overcome their prejudices and reluctance. The advantages of joining such groups are great for the families and consequently, for the child they are raising. I will present, in short, the main methods by which support groups can help the parents: - the therapeutic group gives the individual the opportunity to observe that he is not the only one being in a difficult situation, that other people also go through difficult times, that others have problems as serious as theirs, if not even worse. These findings have the effect of blurring the feelings of loneliness, despair, hopelessness [5]. - information is vital for the support groups of the families having children with ASD. They are fight with an unknown enemy, whose unpredictable character scares them. When the group moderator shares information on the disorder, its evolution, possible symptomatological patterns and also methods of coping with them, a significant improvement of the way the participants of the group solve their problems is already observed. But the information is not only shared by the leader of the group; the members also actively exchange ideas, strategies of coping with the situation and ways of approaching the delicate situations that appeared. The members of the group win by both offering and receiving help. They offer support, reassurance, suggestions and insight to one another. They will often accept observations from another member more easily than from the therapist himself, who remains a paid professional whereas the other members represent the real world and can count on their spontaneous and honest reactions, on their feedback [7-10]. Offering help has a psychological extent: it makes you see yourself as being more powerful, being the one who knows and can offer, so that many of the group members finish this process with an increased self-esteem, which helps them manage their own problems and moods much better. One of the most powerful therapeutic factors is the catharsis. By talking the members of the group both exchange information and form a coalition, but they also release a series of tensions and frustrations accumulated throughout the attendance. There is also some kind of emotional ambivalence which consists of the fact that their position as caretakers forces them to be merciful, helpful etc (and they really are as such!) but they also accumulate a series of resentments towards the condition of their child. Romanian Journal of Child and Adolescent Psychiatry

5 Psychologically assisting the family of the child with ASD The group becomes the only place where they can complain, where they can be eyed with compassion and can release all these negative effects, as all the other members, while going through a similar experience, are able to understand and accept their own. A POSSIBLE PATTERN OF ORGANIZING AND FUNCTIONING OF THE SUPPORT GROUP It is necessary to set a time and space frame of our appointments and to structure sessions in a certain way; but if we feel, along them, the need of the members to discuss a certain topic than the one we proposed or if the importance of the topic leads to a discussion exceeding the time we had planned, it should not be regarded as an infringement of the working technique but as a necessity of being flexible and adapting it to the real situation. We would like to present, in short, a possible pattern of forming and managing a support group, indicating the fact that the themes of the sessions need to be adapted to the needs its members have; the curriculum presented herewith has just an orientative character [11-13]. FORMING THE GROUPS Groups will be formed of the family members of the children with ASD; the number of the group members is between 8 and 10; The group will be lead by a moderator (psychologist, therapist); The frequency of the sessions will be once a week, with a length of 1h 30 min each; The total duration of the group functioning 10 weeks; CURRICULUM The first group session is aimed at getting the members become familiar with each other and with the moderator. Each of them will introduce themselves and will tell their stories. Let s understand ASD presenting a film and discussing about the cognitive and behavioural symptoms of the disorder; What psychological effect did the diagnosis of their own child have? How did we transmit the diagnosis to our partner, to friends and relatives? Difficulties in the process of attendance; how do we cope with them? The management of tantrum crises; The change of the attendant s life style and the consequences of this change on his own and on the family regarded as a system; The attendant s stress coping strategies; Cognitive behavioural techniques of reducing anxiety; Evaluating the condition of the family members after attending the support group REFERENCES 1. Dobrescu, Iuliana (2010) Manual de Psihiatrie a Copilului şi adolescentului, Editura Infomedica, Bucureşti. 2. Corsello M, Christina (2005), Early Intervenţion in Autism in Infants and Young Chidren, vol.18, no.2, pp.74-85, Lippincot Williams &Wilkins, Inc. 3. Exkorn, Karen Siff, (2010) Să înţelegem autismul, Editura Aramis, Bucureşti. 4. Ionescu, A.,2003, Introducere in psihoterapie, Editura Fundaţiei România de Mâine, Bucureşti. 5. Georgescu, M., (2008), Introducere în consilierea psihologică, Editura Fundaţiei România de Mâine, Bucureşti. 6. Yalom, I., (2008), Tratat de psihoterapie de grup, Editura TREI, Bucuresti. 7. Guimon, H., (2006), Introducere in terapiile de grup, Editura Polirom, Iasi. 8. Guimon, J., Weber-Rouget, Beatrice, (2006), Terapii scurte de grup, Editura Polirom, Iasi. 9. Harris, S.L., Handleman, J.S. (2000), Age and IQ as predictors of placement for young children with autism: A four to six year follow up. Journal of Autism and Developmental Disorders, 30 (2), Leaf, R., McEachin, J.coord., (2009), Ghid de terapie ABA, Editura Frontiera, București. 11. Marcelli, D., (2003), Tratat de psihopatologie a copilului, Editura Fundaţiei Generaţia, Bucureşti. 12. Predescu, L.(2011), Cu autismul la psiholog, Editura For You, București. 13. Sheinkopf, S.J., Siegel, B. (1998), Home based behavioral treatment of young children with autism. Journal of Autism and Developmental Disorders,28(1), Volume 1, Issue 1, January June, 2013

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