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OVERVIEW Drawing on over 30 years of service provision, Geneva Centre for Autism in Toronto, Canada, has developed an innovative model of service which is premised on a family-centred approach to service delivery. Participants in this presentation will be provided with a best practice model for supporting families to successfully cope during their most challenging periods which might include the period following the diagnosis, transitions to new life stages and/or situational crises for the family.
The presenter will provide an overview of systems theory which is a conceptual framework for understanding how all systems operate, including family systems. The presenter will highlight some central concepts from systems theory as they relate to a family's ability to effectively support a family member with an ASD. For example, the importance of homeostasis', steady state', equilibrium', information inputs' and feedback' will be outlined during the presentation.
Based on the tenets of systems theory, the presenter will describe the impact on families as they cope with some of the primary challenges associated with supporting a family member with an ASD. As well, the presenter will discuss a range of intervention strategies that will enable families to cope more effectively. These intervention strategies will include: 1) Parent education 2) Counselling 3) Support groups for parents and siblings 4) Service coordination/case management 5) Respite/parent relief.
SYSTEMS THEORY Systems theory emerged from the work of Ludwig von Bertalanffy, a biologist, who postulated that all systems, regardless of their complexity or diversity, will function according to universal concepts and principles. The theory explains how systems maintain themselves and how these systems can develop and change over time. Bertalanffy suggested that if we could uncover the general laws that govern the organization and operation of systems, then we would be able to analyze and solve problems in any domain within any type of system. The theory represented an attempt to integrate the perspectives and research from a wide range of disciplines including biology, physics, engineering and organizational theory. In the 1950's, the notion of systems theory was popularized in the field of psychology by James Miller. In the 1970's, the theory was introduced to the social work profession by Gordon Hearn who suggested that people were inextricably interconnected to their environment and to each aspect of the multiple systems in which they existed. Today, the theory is still taught to many social workers as a foundation which guides their social work practice.
When supporting families impacted by ASD, systems theory has important implications for practice/intervention strategies. For example, the theory posits that change within any part of the family system will impact all of the other people and/or parts of the system. Thus, the theory encourages interventions that focus on the needs of the family system and the larger social systems, rather than focusing exclusively on the needs of the person with an ASD. According to the theory, parents and siblings will become more effective in supporting and enhancing the overall well-being of the person with an ASD as they increase their capacity to cope by enhancing their knowledge base, their emotional health and their ability to communicate within the family system and the outlying systems in which they exist. Conversely, if we fail to address the needs of the siblings and parents, then their coping challenges will have a negative impact on the ability of the person with an ASD to cope or function at his/her optimal level.
At Geneva Centre for Autism, the model of service delivery incorporates a family-centred perspective. Although many of our clinical services focus on meeting the needs of the person with an ASD, the overall service plan for that client will always incorporate a plan for meeting the needs of each person within the family system. As such, the organization offers a range of direct and indirect services which are designed to meet the needs of siblings and parents. These services include parent education, counselling, support groups for parents and siblings, service coordination/case management and respite/parent relief.
PARENT EDUCATION Since people with an ASD often experience the world in a way that is quite different from neurotypical people, their behaviour and/or motivations can often be misinterpreted by others. This misinterpretation can often cause both the parent and child to experience frustration and anger which can also lead to behavioural problems. For most parents, the first step after learning about their child's diagnosis of an ASD is to gain a better understanding of autism spectrum disorders and the appropriate intervention/parenting strategies that will be helpful for their child. As parents gain knowledge and skills that enable them to help their child, they typically increase their ability to cope as a family. In addition, parents will typically require ongoing training and education in order to successfully manage new situations as their child with an ASD progresses throughout the lifespan. For example, parents may need information about sexuality issues as their child progresses through adolescence; they may require information about issues related to adult living as their child completes high school; they may need to learn about estate planning as they continue to age as parents.
COUNSELLING The emotional aspects associated with being a parent or sibling to a person with an ASD can be complex and challenging. Often, family members benefit from individual or family counselling in order to enable them to develop coping strategies and/or cognitive perceptions that facilitate their ability to manage their unique situation more effectively. As they learn to cope in more helpful ways, the family members will be more effective in supporting the family member with an ASD.
SUPPORT GROUPS FOR PARENTS AND SIBLINGS Support groups offer many benefits to parents and siblings. First, the group setting helps to normalize many of the thoughts and feelings that parents and siblings typically experience; they realize that they are not alone. As well, the group setting allows the members to access social support and relevant information that will facilitate their ability to cope with their situation.
SERVICE COORDINATION/CASE MANAGEMENT SUPPORT In order to enable a family to cope effectively, they often require access to supports/services/resources from a broad range of systems outside of their family system. These other systems might include the health system, the educational system, the social service system, spiritual/religious communities, community groups and so on. In many cases, these service options and their access mechanisms can be highly complicated and confusing for families. In order to access these support systems, the family member(s) will often require information, advocacy and/or coaching from a staff member at Geneva Centre for Autism.
RESPITE/PARENT RELIEF The physical, mental and emotional toll of parenting a child with an ASD can be very taxing. In order for parents to maintain their capacity to be effective caregivers to their children, they often need to have regular breaks so that they can regain the physical, mental and emotional strength that the role demands from them. At Geneva Centre for Autism, parents can access weekend respite, evening respite and summer camp respite whereby their child is supported in a safe and stimulating environment. As the parents regenerate themselves with a break from their caregiving responsibilities, they are more prepared to meet the needs of their child with an ASD and his/her siblings.
Learning Objectives:
Content Area: Family and Sibling Support
Paul Michael Van de Laar, B.A., M.S.W.
Manager of Community Support Services
Geneva Centre for Autism