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Stress and Resilience Among Families With Children With Autism Spectrum Disorder
For most parents, child-rearing brings hearty helpings of joy and stress. Adults parenting children with autism spectrum disorder (ASD) often find their own particular set of rewards and challenges. ASD can test a family’s resilience, but research shows there are coping methods and approaches that can lessen the impact.
Dr. Nicole Hamilton, who holds a PhD in general psychology with a specialization in child and adolescent development, says human services professionals can help families build resilience by designing interventions that include all family members.
“This will enhance the resilience of the whole family, which will also in turn reduce the family’s stress and make for a stronger family system,” she says.
Dr. Hamilton, a senior contributing and lead faculty member in Walden University’s online PhD in Human Services degree program, has extensively published and presented research on topics such as ASD, parenting and sibling relationships, and addiction and academic achievement. In “Stress and Resilience Among Families With Children With Autism Spectrum Disorder,” excerpted below, Dr. Hamilton shares research that may be of interest to people earning a human services degree or working in human services jobs, and to families whose lives are touched by ASD.
What is ASD?
ASD is a lifelong developmental disorder that begins before the age of three.1 One out of every 64 children in the United States is identified as having ASD, and the rate is increasing. ASD is considered to be a neurodevelopmental disorder that is characterized by deficits in social interaction and communication, restricted and repetitive patterns of behavior, interests, or activities.2 Children with ASD may lack social-emotional reciprocity, not understand or utilize nonverbal communication, and may have deficits in relationships.3
Some symptoms are likely to present early in development. However, not all symptoms may manifest until later, making developmental skills inconsistent, including their responses to interventions. The often-multiple occupational performance deficits related to ASD can impact a family and the well-being of that family.
Stress in Families With Children With ASD
Raising a child with disabilities may represent a challenge to the family system.4 It is well-known that children with ASD pose a range of challenging behaviors (Schlebusch & Dada, 2018). The deficits of the disorder present themselves early in development and are pervasive in nature, affecting the rest of the individual’s life. The problems associated with ASD not only affect the individual, but also the family members. In particular, raising a child with ASD can place a family at risk for negative stress outcomes.
Once a family receives the diagnosis, then they must appraise the situation and adjust to new roles and expectations. This alone can cause more stress and a poorer quality of life. Families may find that routines are disrupted and must be more rigid or structured, resulting in fewer activities and social isolation from other families (Kuhaneck et al., 2015).
Families with a child with ASD have reported low levels of well-being, negative feelings, marital strain, and financial difficulties, and face symptoms of depression resulting in disrupted family relationships and family coping due to a heighted level of stress for the families5,6 (Schlebusch & Dada, 2018).
As ASD is a lifelong disorder, there are specific implications as the child grows. There are increases on the demands of parenting in deciding treatment options and the financial strain that might co-exist with this.6 Some families increase the stress due to negative coping including active avoidance, self-blame, or distraction. However, other families will report using more positive coping strategies such as positive reframing, acceptance, and positive coping, which result in less stress for the family. In this context, moving the focus to effectively coping with the stressors and providing care has become a positive focus for this population, often referred to as resilience.
Promoting Resilience Among Families
Although the research continues to try and understand how stress impacts family members with children with ASD, there is still a wide range of theory and research to explain the resilience that some families seem to possess (Schlebusch & Dada, 2018). There are certain resilience factors, that are considered both strengths and resources, that enable individuals and their families to respond positively to the challenges of ASD.7 However, the capacity to remain resilient, or even thrive, during difficult challenges is relatively new to the literature.8
It is suggested that family resilience is related to family communication, problem-solving, family connectiveness, and family spirituality.5 In “Family Resilience: A Framework for Clinical Practice,” F. Walsh formulated a unique model, for families of children with ASD, to include these elements to show how adversity can be dealt with by using effective family processes. The three key processes in family resilience are:7
Family Belief System
The family belief system can normalize and contextualize the adversity or distress and bring a sense of coherence by approaching the situation and understanding what resources are available. Having a positive outlook is found through optimism, hope, a “can-do” spirit, and acceptance that a diagnosis will not change, but that the family can move forward. Also, within the family belief system are transcendent beliefs and practices through cultural or religious traditions or even more informal religious practices. Most importantly, the family should look toward a better future and see change as an opportunity for growth.
The organizational patterns, as the second key process, increase resilience with flexible structure, connectedness, and through social and economic resources. Families should lead with authoritative leadership that is both nurturing and guiding. Family cohesion is significant in accordance with mutual support and commitment among family members. The emphasis should shift from family deficits and challenges to strengths and growth. With the proper resilience-oriented services, the whole family can be empowered to overcome adversity and to focus on coping resilient strategies that work to strengthen the family.
The last key factor, communication and problem-solving, fosters resilience by bringing clarity to situations that families with children with ASD may experience. Communication should be clear about their fears, what they understand, and use open discussion. Families should encourage emotional expression and problem-solving, especially when crises emerge, and focus on the learning experiences to foster strength and resources. Collaborative problem-solving and conflict management are essential. Sharing decision-making and offering resolutions among the family means setting goals and celebrating successes.
Implications for Human Service Professionals
Exploring the positive outcomes that are possible when utilizing resilience strategies can help families realize the importance of recognizing resilience factors (Schlebusch & Dada, 2018). Service providers can assess the resilience of the family and interpret what areas are in need and what areas are positively working already. It’s important to acknowledge this, in particular, as resilience is a responsibility that is placed on the family.9
Resources for Families
Here are some expert ASD sources where families can find more information:
Earn a Human Services Degree
If you want to make a difference in the lives of adults and children, earning an online master’s in human services degree can help prepare you for a health and human services career.
In Walden University’s human services master’s degree program, you can choose from the General Program or one of eight specializations that let you tailor your studies to your career interests. Options include Community and Social Services, Human Services Nonprofit Administration, and Family Studies and Interventions. Walden also offers online bachelor’s in human services and PhD in Human Services degree programs.
The accredited university’s human services degree programs are designed for working professionals who want to further their education and advance their careers while continuing to work and enjoy family life. If you’re committed to leading social change, and helping to build healthier communities and stronger families, consider earning a human services degree.
Dr. Nicole Hamilton has been with Walden University since 2015 and currently serves as a senior contributing and senior lead faculty member in the Human Services PhD program. She holds a PhD in general psychology with a specialization in child and adolescent development, a master’s in counseling psychology, and a master’s in early childhood studies with a specialization in administration, management, and leadership. Her primary areas of research include divorce, suicide prevention, addiction, and sibling relationships.
Walden University is an accredited institution offering a master's in human services program and other online human services degrees. Expand your career options and earn your degree in a convenient, flexible format that fits your busy life.
Walden University is accredited by The Higher Learning Commission, www.hlcommission.org.
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