Parallel Symposia
Family Support in South East Asia: Insights from Research
Presentation 1: Parent Coping, Experiences and Support in Singapore
Autism Spectrum Disorders (ASD) are neurodevelopmental disorders affecting social communication and with a pattern of restrictive, repetitive behaviours. Individuals with ASD face a wide range of challenges due to their core deficits and other comorbidities. Caregivers of children with ASD have been reported to experience higher parenting stress compared with parents of children with other developmental disabilities. In Singapore, disease burden research has cited ASD- related health problems to be the most debilitating when compared to other child and adolescent physical and mental health disorders. As such, the needs of the caregivers of these children and adolescents need to be understood and addressed. This presentation examines recent research in Singapore focusing on the coping, experiences and support needs of parents of children and adolescents with ASD in Singapore
Speaker
Dr. Sung Min, Senior Consultant, Department of Child & Adolescent Psychiatry Institute of Mental Health, Singapore
Presentation 2: Eighteen-years of Experience in Home-based Intervention for Children with Autism Spectrum Disorders in China
The team of Child Development & Behavioral Center of the Sun Yat-Sen University has been exploring how to carry out family-based ASD interventions in China since 1999, which could possibly be the most effective and affordable intervention for families with ASD children. A two-day curriculum was developed to help parents build up capacities to initiate home-based ASD intervention process individually. An additional four weeks of intensive hands-on intervention skill teaching was conducted by experienced therapists to parents on a one-to-one basis, which empowered parents on the areas of behavioral management, structural training and social relationship skills. An intensive intervention schedule that took 25-40 hours per week was developed to tailor each child’s needs and characteristics. Parents also received evaluation and follow-up instructions every six months. In 2015, our team joined the WHO-PST project and started working on a non-specialist delivered and non-intensive home-based intervention program for children with ASD. PST will be implemented in a community level, and benefit mainly families living in low-resource setting areas with limited or no access to healthcare services. Implications of these training programs and research on how to support families’ growth and service development in China will be discussed.
Speaker
Dr. Chen Biyuan, Pediatrician, Child Developmental & Behavioral Center, Department of Pediatrics, The Third Affiliated Hospital, Sun Yat-Sen University, China
Dr. Chen is a Developmental-Behavioral Pediatrician in Child Developmental-Behavioral Center at the Third Affiliated hospital of Sun Yat-Sen University (SYSU) in Guangzhou. She is an experienced clinician in working with young children with Autism Spectrum Disorders (ASD) and other Developmental Disabilities. She has been involved extensively in a national 973 project and established the Chinese Autism Genetic Resource Bank (CHAGRB). She also worked on a randomized controlled Trial to investigate the effectiveness of a home-based Behavior-Cognition-Relationship Intervention (BCRI) among children with ASD. Dr. Chen worked in Kennedy Krieger Institute of Johns Hopkins University in U.S as a post-doctoral fellow during 2013-2014. Through working closely with Dr. Paul Lipkin, the Director of Interactive Autism Network (IAN), Dr. Chen acquired necessary knowledge, skills and expertise, and continued to establish an on-line ASD registry and rehabilitation platform in China. Since 2015, Dr. Chen has been working closely with the WHO team for a home-setting ASD intervention project named Parent Skill Training (PST) as a national PST Master Trainer in China. She will continue to work on adaptation, implementation, pre-pilot and pilot field trail, and perform a national RCT of the PST project.
Presentation 3: Family Needs among Parents of Children with Autism (ASD) in Hong Kong
Background and objective: Parents of people with ASD are prone to suffer from elevated pressure in children care and public stigmatization. Therefore, understanding parental needs is of vital importance for delivering proper support. This study aimed to explore the important and unmet family needs as perceived by parents of children with ASD in Hong Kong.
Methods: Important and unmet needs were measured by the 65-item Family Needs Questionnaire (FNQ) while psychological well-being was measured by the X item General Health Questionnaire (GHQ). Participants were recruited through designated NGOs, parent advocacy groups and online media through snowball sampling. Exploratory Factor Analysis (EFA) on the FNQ was performed by using the preschooler sample (n = 395). Further analyses were performed using the entire sample (n = 668), which included parents of children from different age groups and in different types of schools.
Results: The EFA on FNQ yielded four domains of needs, namely Professional Support for Child, Government & Community Support, Parent Psychosocial Support, and Child’s Social Health Support. All four domains were rated as important and unmet by parents with children in different schooling statuses. . Parent Psychosocial Support was rated as the least unmet (75%-81%) need despite the high GHQ mean score that exceeded the clinical screening level. This implied a possible underestimation by the parents on their own psychosocial needs.
Conclusion and Implication: Findings suggested the importance of holistic support not only to the child with ASD, but also to the parents. Service providers should try to foster the acceptance and support from the government and community stakeholders to enhance the well-being of such families as a whole.
Speakers
JC A-Connect (Family Support), The University of Hong Kong:
Ms. Wylie Li, Research Assistant, JC A-Connect (Family Support), The University of Hong Kong
Ms. Karine Ngai, Programme Officer, JC A-Connect (Family Support), The University of Hong Kong
The JC A-Connect Family Support Team of HKU was formed with the support of funding by the Jockey Club Charities to conduct research on support services for families with members on the autism spectrum. The team has proposed a localized family support framework. A pilot parent support programme was also developed for parents with a child who is newly diagnosed with autism.
Moderators
Dr. Andy Shih, Senior Vice-President, Public Health and Inclusion, Autism Speaks
Dr. Paul Wong, Associate Professor, Department of Social Work and Social Administration, The University of Hong Kong
Symposium II
Psychosocial Support for Families in Hong Kong (家庭支援服務－社交心靈篇)
Presentation 1: Interventions Targeting the Psychological Well-being of Parents having Children with Autism Spectrum Disorder (ASD): A Systematic Review (以系統性文獻回顧探討為自閉特色孩子之家長提供的心理介入服務)
Background: Various types of interventions were developed to support parents of children with ASD, yet, little is known about their effectiveness.
Aim: The current review aimed to investigate the effectiveness of interventions targeting psychological well-being of parents having children with ASD.
Method: Comprehensive search between 1985 and 2016 was conducted in 11 electronic databases through a three-stage systematic screening process.
Results: Thirty-one articles were identified and reviewed. Effectiveness was reflected by improving positive well-being qualities, such as self-efficacy and general health, and reducing negative well-being qualities, such as distress and psychological disturbance. Essential intervention elements including behavioral management and psychological support were identified.
Conclusion and Implication: Findings were generally positive in improving parents’ well-being, by either increasing positive qualities or reducing negative qualities. Since quality of the studies is heterogeneous in nature, more rigorous studies are in demand to identify ways to improve well-being of parents having children with ASD.
Speakers
JC A-Connect (Family Support), The University of Hong Kong:
Dr. Samantha Wong, Research Officer, JC A-Connect (Family Support), The University of Hong Kong
Ms. Yuen Suet Ying, Research Assistant, JC A-Connect (Family Support), The University of Hong Kong
The JC A-Connect Family Support Team of HKU was formed with the support of funding by the Jockey Club Charities to conduct research on support services for families with members on the autism spectrum. The team has proposed a localized family support framework. A pilot parent support programme was also developed for parents with a child who is newly diagnosed with autism.
Presentation 2: Sharing on what Parents’ Emotional Health Plays in Parenting Children with Special Education Needs (家長情緒健康在教養有特殊教育需要之孩子之重要性)
Taking care of children with Special Education Needs usually brings great pressure to parents. Parents tend to focus on attending to their children’s needs, equipping themselves with knowledge and training skills, but rarely thinking about their own emotional needs. Evidence has been established for the positive relationship between caregivers’ emotional health and the effectiveness of implementing the learnt parenting knowledge and skills. Cognitive Behavioural Therapy Parent Group could be a possible way to enhance and strengthen parents’ emotional health. It is a self-discovery journey for parents and workers to work hand-in-hand together to explore parents’ own emotions and thoughts, such as being aware of their emotions, the root of these negative emotions, and their frequent negative thinking patterns. These processes helped parents to develop tailor-made emotional management techniques.
Speakers
Ms. Cherry Ku, Project Officer of JC A-Connect (Family Support Programme), Caritas-Hong Kong
Ms. Ku has been practicing rehabilitation service for over ten years. In addition to her experience as an In-Charge of the Special Child Care Centre of Caritas-Hong Kong, she has thorough understanding of children with special needs. Ms. Ku is now the Project Officer of the JC A-Connect (Family Support Programme). Combining her years of experience in frontline service and management, Ms. Ku and her team provide support service such as individual consultation, monographic talks and therapeutic groups to family members with children of ASD.
Ms. Annie Suen, Senior Social Worker, Caritas-Hong Kong
Ms. Suen has 8 years of experience in serving children with ASD and their families. She was the Person In-Charge of the Caritas Comprehensive Intervention Programme for Autistic Children from 2013 to 2015. She provides Social Thinking service to primary and secondary students, consultation, talks and supporting service to the families of people with ASD. Ms. Suen is now in the team of JC-A-Connect Family Support Programme.
Presentation 3: SMART Fathers’ CLUB (SMART爸爸俱樂部 ~ 男士服務計劃)
Fathers play an important role in families especially in Chinese culture. Many fathers feel stressful as they are not only the breadwinner but also bear the extra costs for caring their disabled children. They are also expected to share day-to-day child care and childrearing responsibilities. Under tremendous stress and pressure, fathers generally find it very hard to express their feelings and talk about their children’s disabilities with others. Moreover, mothers are usually the primary receivers of information and service resources. Fathers thus likely receive second hand information and are not as ready to be actively involved in the support network as their wives.
To fill this service gap, Heep Hong Society formed the Father’s Club in 2000 with the aim of providing a platform for fathers of special needs children to share experiences and develop a mutual support network among themselves. This presentation will give an overview of the development of the Father’s club, share practice wisdom as well as insights for future support for these fathers.
Speaker
Mr. Lam Kuen, Registered Social Worker, Heep Hong Society
Moderator
Ms. Denise Mak, Executive Producer, Commercial Radio 1
Symposium III
Special Family Support Services (家庭支援服務－特色篇)
Presentation 1: Practical Exploration of ASD Family Support Services in Guangzhou (自閉症兒童家庭支持性服務的實踐探索)
Zhongda Social Service Organization of Guangzhou provides supporting services to families with ASD children since 2015. The project serves as a “back-up” for these families with the aims to enhance their parenting competence, reducing stress, and promoting the general well-being of the entire family. The project has served more than 500 families so far. Most of the parents reported improved parenting competence and reduced stress. The project also provided opportunity and platform for parents to form self-help association and volunteer team. Further exploration and feasibility of this service model in mainland will be discussed.
Speakers
Ms. Diao Yingxia, Project Manager and Social Worker, Zhongda Social Service Organization of Guangzhou
Ms. Zhu Xingxing, Project Manager and Social Worker, Zhongda Social Service Organization of Guangzhou
Presentation 2: PEERS ® (Social Skills for Teenagers with Developmental and Autism Spectrum Disorder) – A Parent-assisted Program (「友來有往」自閉症青少年社交小組 – 家長參與 · 同心同行)
Social and communication deficits are core characteristics of autism spectrum disorder (ASD). PEERS® (Program for the Education and Enrichment of Relational Skills) is an evidence-based parent-assisted program which has proven its effectiveness in improving the social knowledge and social skills of ASD teens. SAHK is currently in the process of developing a Hong Kong version and testing the efficacy of the program in the local context.
Parents group and teenagers group are run in parallel. During each group session, adolescents are taught important social skills (e.g. how to maintain the conversation appropriately, how to handle teasing) as well as given the opportunity to practise these skills in the sessions. In parallel, parents are educated how to assist their teens in completing weekly socialization homework assignments. They will also receive feedbacks from the treatment team on their social coaching. The parental involvement not only helps the teens to generalize the skills learnt, but also enables continuous social coaching to the teens in a long run. Preliminary result provided evidence to show that the Chinese-Cantonese version of PEERS ® is effective in improving the social skills and social knowledge in adolescents with ASD in Hong Kong.
Speakers
Ms. Kaye Lung Ka-ying, Project Manager of JC A-Connect (Family Support Programme), SAHK
Ms. Lung is a registered social worker who has experience in serving children with Autism and their parents. She had provided social skill training to primary and secondary school students with Autism in schools and community. She assisted children to better adapt their first year in their primary ordinary schools. She delivered comprehensive support services for promoting inclusion of students with ASD in ordinary schools. Ms. Lung has been rendering various parent services to enhance the abilities and confidence of parents in supporting their children with ASD, and providing emotional support for them. She is a certified PEERS® provider.
Ms. Cora Cho Wai-kwan, Speech Therapist, SAHK
Ms. Cho is a speech therapist of SAHK. She possesses an advanced certificate in psychology and currently undertaking her Master study in behavioural health. Ms. Cho emphasizes on providing intervention through a holistic perspective in order to maximize the treatment efficacy. She has the working experience in supporting pre-schoolers, primary students and also secondary students with ASD and SEN, and also supporting their family members by providing knowledge and skills training to them. Ms. Cho is a certified PEERS® provider and she involves in developing the Hong Kong version of PEERS® Program for SAHK.
Presentation 3: Child Assessment Service (CAS) in Hong Kong: Insight gained from assessment to interim support and tool development for children with Autism Spectrum Disorder
The current presentation was to have an overview of the important landmark that the Child Assessment Service (CAS) has made in supporting families and children with Autism Spectrum Disorder (ASD). Beyond the bread and butter role in making diagnosis for children with ASD, the CAS has been offering interim support for families at two important transitional stages, that is when the children are newly diagnosed and when they are firstly admitted to mainstream primary schools. New incentive to develop an indigenous and standardized battery of the theory-of-mind for children in Hong Kong was made in 2009. On top of that, since 2008 the CAS has taken a lead to liaise with various Parent Support groups and examine the needs and challenges facing people with ASD and their parents through the platform of Autism Parents Alliance Hong Kong (APAHK). Review of important experience and insight gained from the above work will be shared.
Speakers
Dr. Estella Woo Kai-fan, Senior Medical Officer and Subspecialist in Developmental-Behavioral Pediatrics, Child Assessment Service, Department of Health, HKSAR
Dr. Lorinda Lam, Clinical Psychologist, Child Assessment Service, Department of Health, HKSAR
Moderator
Mrs. Chan Pun Kit-ling, Lecturer, Division of Learning, Development and Diversity, Faculty of Education, The University of Hong Kong
Symposium IV
Students with ASD in mainstream PRIMARY schools: Essential strategies for supporting social-emotional development
The primary school years are a stage for children with Autism Spectrum Disorder (ASD) to establish and consolidate essential skills for functioning well in a community. Important concepts and strategies pertinent to the management of social and emotional difficulties of students with ASD will be discussed. Intervention strategies targeting different phases of the melt-down cycle and related educational procedures will be presented. Hidden social rules that these children often miss, which contribute to their social difficulties, will also be explained. Illustrations will focus on common problems encountered in the mainstream primary school context.
Speakers
Dr. Sonia Chan Man-kuen, Educational Psychologist of JC A-Connect (School Support), The University of Hong Kong
Ms. Elsa Chiu Lai-yi, Educational Psychologist of JC A-Connect (School Support), The University of Hong Kong
Mr. Lui Wan-hap, Educational Psychologist of JC A-Connect (School Support), The University of Hong Kong
The speakers are educational psychologists from the JC A-Connect (School Support) Team, The University of Hong Kong. They are experienced psychologists with substantial experience providing support to parents and teachers in the education of children with ASD. In the JC A-Connect project, they collaborate with NGO professionals to provide school-based programmes for students with ASD and to develop related resources. They also serve as instructors in training seminars and courses aimed at promoting related knowledge and skills among teachers and other professionals.
Symposium V
Students with ASD in mainstream SECONDARY schools: Essential strategies for supporting social-emotional development
Challenges in social-emotional areas for teenagers with Autism Spectrum Disorder (ASD) arise from skills deficit intrinsic to the disorder and are complicated by adolescent issues. Essential concepts and strategies pertinent to the management of social and emotional difficulties of teenagers with ASD will be discussed. Intervention strategies targeting different phases of the melt-down cycle and related educational procedures will be presented. The lack of understanding of subtle social rules, which contribute to their social difficulties, will also be explained. Illustrations will focus on common problems encountered in the mainstream secondary school context.
Speakers
Ms. Ho Sin-ting, Educational Psychologist of JC A-Connect (School Support), The University of Hong Kong
Ms. Bertha Lee Tsz-wing, Educational Psychologist of JC A-Connect (School Support), The University of Hong Kong
Dr. Kathy Wong, Educational Psychologist of JC A-Connect (School Support), The University of Hong Kong
The speakers are educational psychologists from the JC A-Connect (School Support) Team, The University of Hong Kong. They are experienced psychologists with substantial experience providing support to parents and teachers in the education of children with ASD. In the JC A-Connect project, they collaborate with NGO professionals to provide school-based programmes for students with ASD and to develop related resources. They also serve as instructors in training seminars and courses aimed at promoting related knowledge and skills among teachers and other professionals.