A case study on parental acceptance of information about autism spectrum disorders

JOURNAL OF SCIENCE OF HNUE Vol. 57, No. 1, pp. 131-141 A CASE STUDY ON PARENTAL ACCEPTANCE OF INFORMATION ABOUT AUTISM SPECTRUM DISORDERS Nguyen Thi Hoang Yen(∗) and Đao Thi Bich Thuy Hanoi Nationnal University of Education E-mail: (∗)nhyen60@yahoo.com Abstract. The aim of this study is to clarify the needs of children with Autism Spectrum Disorders (ASD), the needs of their parents and the parents’ willingness to accept information about ASD. Life-Line Interview (LIM) and Semi-Structured Interview Methods were used in this study for data collection. The subjects were the parents of 3 children with High func- tioning Autism or Asperger syndrome and the children were attending regu- lar class at an elementary school. Three subjects were interviewed in a pilot study. This case study focused on: (1) The process of early detection, di- agnosis and early intervention; (2) The difficulties parents experienced and the kinds of support that parents wished to receive; (3) The support which parents did receive; (4) The need for medical treatment, early intervention and education; and (5) The parents’ view of their child’s future. Keyworld: acceptance, autism, spectrum, disorders. 1. Introduction Over the last decade, special education in Vietnam has developed substantially. Intervention and educational services such as special schools and special education centers for children with developmental disabilities are now more available thanks to governmental sectors, social organizations, private organization, NGOs and educa- tion institutions. Government policy on social welfare and social support for disabled children has improved. The government and society has acted to respond in part to the needs of children with disabilities in general and with developmental disorders in particular, and the needs of their families. There is, however a gap between this need and the willingness of society to support this need. Many special education institutions do not provide adequate services for needy children and their families. And, there are very few institutions/schools that provide integrated education and very few teachers and staff that have had any training to provide special education. Social welfare and economic support provided to families with children with devel- opmental disorders is quite limited. How to respond to the needs of families with 131 Nguyen Thi Hoang Yen and Đao Thi Bich Thuy children who have a developmental disorder is a question that needs to be answered. A number of research studies have been done with children having developmental disorders, including autism. However, little research has been done to discover the difficulties and needs of the families of children with special needs. Such research needs to be done in order to obtain basic information that can then be used to improve the support system and services for children with developmental disorders and their families. 2. Content 2.1. Data collection methods Life-Line Interview (LIM) and Semi-Structured Interview Methods were used in this study for data collection. 2.1.1. LIM LIM was used to investigate the individual’s perception of their life by recalling the events and experiences in life. This is a special method used to understand the interviewee’s vicissitudes of life until the present. The events which percipitated the changes are different with each interview participant. LIM is advantageous because it can be used as a tool to discover the emotions felt by the participants. The researchers were able to obtain accurate data that is described in the same sample. The interviewer was able to measure the life changes experienced by the participants through the use of drawings and word descriptions. LIM focuses on the early, middle or late adulthood. Life-line starts at birth and continues through to the present or the future. The factors that affect and change the Life-Line graph are the events or problems which are usually unexpected experiences of that individual. The 4- step LIM Procedure: (1) The introduction of LIM, (2) An explaination of Life-Line, (3) Drawing and explaining birth to the present. Participants draw their Life-Line starting at their birth point and end at the present. They write their age at each high and low point in the diagram then speak about the event that occurred at certain points or throughout a described period and (4) Drawing from present to the time of death. LIM interview tools includes: A4-sized paper, square paper having sides 286 mm in length and rectangular-shaped pieces of paper with a long side of 174 mm. Interview guidelines The interviewer asks questions about events that occurred which are illustrated by the high and low points in the line graph. Based on the line graph, the interviewer can see at what time in a person’s life important events took place, the low points in a person’s life can be seen and questions can be asked concerning they overcome the difficulty experienced at the time of these events. Referring to high and low points in the graph, questions were asked such as, ‘Can you tell me what happened at this time or what you experienced during this period 132 A Case Study on Parental Acceptance of Information about Autism Spectrum Disorders... of time?’ And, ‘What assistance did you receive during this time?’ when referring to a high area along the line. 2.1.2. Semi-Structure Interview This interview focused on crisis and transition periods in the formal education time period of the person. The interviewer asked about the events and experiences that the parent had realizing that it is sometimes difficult for them to say how they felt at that time. The interviewers questions were designed in advance. Questions were formulated that were easy to answer and would awaken old memories. For example, before you learned what your child’s problem was, where did you go to try to get that information? What did you tell people about your child? What did you do to try to find a school for your child? 2.2. Three case studies 2.2.1. Case 1: A boy, 5.5 years old Chart 1. What was learned through administering LIM? Table 2.2.1.1. The Process of Suspicion - Detection - Intervention - Diagnosis Process Age Status Suspicion 1 year old - Child did not say things like “ba” or “pa.” - Child did not often look into the mother’s face when she feeding him. 133 Nguyen Thi Hoang Yen and Đao Thi Bich Thuy Parents’ Suspicion 1-2 years - Late in speaking. Often anxious. Lack of regular sleep pattern. Always clutch the same pillow. The parents were told that the child does not display ASD traits. Child became hyper active and responsive to others. Suspicion 2 years 3 months - In preschool, the child did not interact with his peers or teachers. He would make loud sounds and cry very often. The child was over anxious. The parents were told to take the child to a specialist to see if he has ASD. Detection 2 years 3 months Parents took the child to the Paediatric Hospital. A doctor there suspected autism. Counselin g 2 years 3 months Doctors advised the parents to carry out an interven- tion program for the child. Early Inter- vention 2 years 3 months Child was enrolled at the Hope Center for an all-day program. Diagnosis 3 years Child was diagnosed as autistic and hyperactive. Table 2.2.1.2. Support needs Period Status Support Needs Detection - Parents learned what the child’s problem was but there was no sup- port available for the child or the parents. - No teachers were found that had the knowlegde or skill to aid the child or parents in a kindergarten setting. * A system that will inform parents about counseling and intervention soon after parents suspect a prob- lem. * Support for the parents. * Specialists and teachers who can recognize ASD and can help parents find counseling and medical care. Intervention - Diagnosis - Parents did not want to go to counseling sessions or receive a di- agnosis because they were afraid of the parents-in-law learning that the child was autistic. But, all members of the family were worried so they took the child to a doctor. -The parents started to accept the possibility of autism, as they watched the child during interven- tion. * Counseling of parents and other members of the extended family. * Help for family members in under- standing the child’s behavior. Enrollment in normal Preschool - Prior to enrollment in a normal preschool, the parents did not have sufficient consultation. * Counseling parents in how to choose a school that is appropriate for the child. 134 A Case Study on Parental Acceptance of Information about Autism Spectrum Disorders... Table 2.2.1.3. Support that parents received and wished they had received Period Support Needs Fields Wishes Doctors Doctor helps determine the child’s problems and recommends medical care and treatment. Teachers Teachers sympathize with the child and support the parents’ effort to teach the child at home. Family & friends Support the parents’ decision to take the child to a special educa- tion center. Provide financial assistance. Media Inform parents about ASD and behavior typical of a child with autism. Wishes of the parents : Parents worry that their child might have enough skills to go to a normal school and they don’t know which primary school will accept their child. They want their child can go to the normal school and to get an assessement before they enter him in a primary school. They hope that their child will get better and can later get a job, be independent and get married. 2.2.2. Case 2: A boy, 8 years old Chart 2. What was learned through administering LIM? Table 2.2.2.1. The Process of Suspicion - Detection - Intervention - Diagnosis Process Age Presentation 135 Nguyen Thi Hoang Yen and Đao Thi Bich Thuy Suspicion 1 year old Child did not say a word. He did not make a distinc- tion between his father and mother. Suspicion 2 years old Child said only two words, “cho” and “ve,” and he was not excited by any objects or people. He liked to watch television, especially the advertising. 2.5 years Child often cried and he did not communicate with other children. Before 3 years old Child sang a lot of Chinese, English and Vietnamese songs but he never used language to communicate, he used echolalic speech and he did not show emotion with parents or others. Detection 3 years 6 months Mother took the child to see a doctor at a Paediatric Hospital and was told that autism was suspected. Counseling 3 years 6 months Parents spoke with a psychologist and a doctor at a hospital about the possible problem. Diagnosis Interven- tion 3 years 6 months Child diagnosed as having high functioning autism. Child starts receiving intervention at a special educa- tion center. Table 2.2.2.2. Support needs Period Status Support Needs Period Status Sup- port Needs Suspicion- Detection -Parents suspect a problem but re- ceive no support. Child was isolated from the neigh- bors. Husband and other family members thought that the problem is the mother’s fault. Teachers did not know how to work with the child. * Early detection when the parents suspected a problem. * Counseling for people to inform them about children with special need. Intervention and Diag- nosis - Counseling received from a doc- tor at the special centre but parents were unable to decide which school would be best for their child. *Counseling provided to parents about schools that would be suitable for an autistic child. Enter school - Parents didn’t have information about primary schools. They make a decision themselves with no real information. Teachers did not have the necessary special skills. To have continued support when the child graduates from elementary school and enters secondary school 136 A Case Study on Parental Acceptance of Information about Autism Spectrum Disorders... Table 2.2.2.3. Support that parents received and wished they had received Fields Wishes Doctors A doctor who would accurately diagnose the child’s problem and recommend to the parents how they can best care for their child. Psychologists & experts Information and counseling provided to the parents about ASD. Teachers Go to the parents’ home to teach the child, counseling provided to parents on how to best interact with their child and chose the best school for their child. That the child be taught the skills needed to attend an inclusive school. Wishes of the parents : Parents fear that their child will not be allowed to study in the normal school systerm. They hope that their child will get better, get a job, become independent and get married. 2.2.3. Case 3: A boy, 4 years old Chart 3. What was learned through administering LIM? Table 2.2.3.1. The Process of Suspicion - Detection - Intervention - Diagnosis Process Age Presentation Suspicion 1 year 6 months Child does not speak. He does not communicate with other children at preschool. Suspicion 2 years old Child gets angry easily. He did not improve in language acquisition. 137 Nguyen Thi Hoang Yen and Đao Thi Bich Thuy Almost 3 years old Parents recognize that their son has a lower cognitive ability than his one and a half-year old sister. Detection 3 years Mother took the child to see a doctor at the ABCD Centre and was told that he might be autistic. Counseling 3 years 2 months Parents receive counseling at centers and also obtain information about ASD through an Internet search. Parents have contact with friends and others parents who have children affected by ASD. Diagnosis Interven- tion 3 years 5 months Diagnosed as Autistic. Begin receiving intervention at a special education centre.(TDCSE) Table 2.2.3.2. Support needs Period Status Support Needs Suspicion- Detection - Parents suspect a problem, search the Internet and get counseling with friends but don’t suspect ASD. Members of husband’s family thought that it is the mother’s fault. The kindergarten teachers didn’t have the skill to work with autistic children • Detection made when parents first suspect a problem. •More experts and teachers who are knowledgable and can counsel par- ents. * Counseling available for people so they can learn about children with special needs. Intervention and Diag- nosis - Docters advise parents to join a special center. Parents’ friends rec- ommend one school but the parents could not decide which school is best for their son. * Counseling available to provide in- formation to parents about schools for children with special needs. Table 2.2.3.3. Support that parents received and wished they had received Fields Wishes Doctors Doctor could determine what the child’s problem was so that the parents could then take appropriate action. Psychological and experts Counseling that provided information to the parents about ASD. Teachers Go to the parents’ home to teach the child and advise parents on how to best interact with and ASD child and chose the best school for the child. Help children with ASD acquire the skills needed to go to inclusive school. 138 A Case Study on Parental Acceptance of Information about Autism Spectrum Disorders... Friends Share information to help other parent find a good intervention center. Internet Websites focused on ASD and blogs in which parents with ASD children can communicate with each other. Wishes of the parents : Parents worry about whether or not their child will improve in the coming years. They wonder if they did the best thing for their child or not. They hope that their child will eventually be able to go to a normal school and made friends with their peers. They don’t know what their child’s future will be. 2.3. Findings from 3 cases 2.3.1. LIM findings The time of their child’s ASD diagnosis was usually the lowest point in the lives of the parents. From that point on they tend to become more positive. In general, the time of diagnosis is described as the lowest point of their life, regardless of when they suspected or detected ASD or started intervention. In Case 1 and 2, it was found that the shock did not last long because soon after diagnosis the children received medical treatment and intervention at a special center and they saw some improvement. However, after a period of time, parents begin to feel hopeless and disappointed because they discovered that their children will improve very slowly. 2.3.2. Semi-structured interview findings Diagnosis period: The parents in all three cases feel strongly that they must do something for their children. They also believe that their children’s disorders will not be cured. The parents feel that it is their responsibility to raise their children even though they have ASD, if there is inadequate support (as in Case 1). The parents feel isolated and pressured and they are oftentimes in denial, and at the same time the child needs for support of his parents. 2.3.3. The Process of Suspicion - Detection - Intervention - Diagnosis The age of diagnosis was 2.5-4 years old in each of the three cases. (There is a need to understand the concept of diagnosis in Vietnam). Differences in the process of Suspicion-Detection and Diagnosis-Intervention. Case 1: Suspicion-Detection-Intervention-Diagnosis. Case 2 and 3: Suspicion-Detection-Diagnosis-Early Intervention. Growing suspicion: Suspicion deepens gradually and begins when the child is about one year old. 139 Nguyen Thi Hoang Yen and Đao Thi Bich Thuy 2.3.4. The difficulties parents experienced Parents get anxious because of the time lag. * Suspicion - Detection: Parents need advice from experts when they suspect abnormality in the develoment of their child. At the same time they would like to connect with other parents who are experiencing a similar problem so that they can support each other (Cases 1, 2 and 3). * Detection - Diagnosis: Doctors should refer parents to a specialist who help them understand their children better and help them find the sources they need to attend to their child’s needs after they receive the diagnosis (Cases1, 2 and 3). * Diagnosis - Intervention: The media, doctors and experts are all needed to advise parents about early intervention centers and special schools. * Time of Transition: There is a need for continuous support as children with special needs advance up through the grades in school (Case 1). 2.3.5. Support to help parents The role of specialists at the centers: To be knowledgable about ASD. The role of teachers: To be able to to work with children with special needs at the center and provide counseling for parents to help them choose a school for their children. The role of psychologists: To provide counseling to the parents. The role of doctors: To recognize the presence of ASD and advise parents regarding treatment and intervention. The role of family, and friends: To provide financial support, to help take care of the children and to provide sympathy. 2.3.6. The need for information from the media, early intervention and education Medical treament: Doctors need to be aware of ASD symptoms so that they can make a proper diagnosis and then prescribe proper medicines and support treatment centers that can assist ASD children. Early intervention, and education: Improve the school systerm such that it can aid ASD children. Make available teachers who can visit ASD children at homes and teach them at school. Train experts who can provide counseling for parents so that they can understand ASD. 2.3.7. The ways parents see their children’s future Parents hope that their children will be independent, have jobs and get married (Cases 1 and 2). However, parents do not think about the