Catherine University SOPHIA Master of Social Work Clinical Research Papers School of Social Work 5-2015 Supporting Families of Children with Autism Spectrum Disorder Marnie Tuenge St. Catherine University Follow this and additional works at: https://sophia.edu/msw_papers Part of the Social Work Commons Recommended Citation Tuenge, Marnie. Supporting Families of Children with Autism Spectrum Disorder. Retrieved from Sophia, the St.
Catherine University repository website: https://sophia.edu/msw_papers/532 This Clinical research paper is brought to you for free and open access by the School of Social Work at SOPHIA. It has been accepted for inclusion in Master of Social Work Clinical Research Papers by an authorized administrator of SOPHIA. For more information, please contact amshaw@stkate. Supporting Families of Children with Autism Spectrum Disorder By Marnie Tuenge, B., BCaBA MSW Clinical Research Paper Presented by the Faculty of the School of Social Work St.
Catherine University and the University of St. Paul, Minnesota In Partial fulfillment of the Requirements for the Degree of Master of Social Work Committee Members: Mike Chovanec, Ph., LICSW, LMFT (Chair) Janet Anderson, MSW, LICSW Jacki Harth, M., BCBA, LP The Clinical Research Paper is a graduation requirement for MSW students at St. Catherine University/University of St. Thomas School of Social Work in St.
Paul, Minnesota and is conducted within a nine-month time frame to demonstrate facility with basic social research methods. Students must independently conceptualize a research problem, formulate a research design that is approved by the research committee and the university Institutional Review Board, implement the project, and publicly present the findings of the study. This project is neither a Master’s thesis nor a dissertation. Running Head: SUPPORTING FAMILIES OF CHILDREN WITH AUTISM ii Abstract This qualitative research study examines the challenges that families of children with autism spectrum disorder (ASD) face when implementing their child’s treatment objectives.
Likewise, this study investigates which strategies families utilize to actively participate in family skill objectives to implement their child’s treatment plan. Three caregivers (two women and one man) were recruited from around the state of Minnesota to participate in this study. A series of open-ended and scaled questions were asked of participants and the interviews were audio-taped for transcribing purposes. A literature review was written to highlight some of the expressed challenges and strategies families utilized and faced when implementing treatment objectives and these themes were compared and contrasted to the actual research.
Research findings indicated that families were challenged by the availability of their schedules to participate in skill development, by challenges in caregiving for other children who resided in the house, and by their own physical and mental health concerns. The research indicated that some of the effective strategies that families utilized included involving other family members in the participation of family skills, working with therapists to generalize their child’s behavior to other contexts and people, and prioritizing time to work with a therapist on skill implementation and development. Being familiar with the challenges families face as well as the strategies they employ to address these challenges are imperative for social workers and other professionals who serve families of children with ASD. It is crucial as professionals to create and reinforce effective family skill development and the successful acquisition and generalization of children’s skills.
Running Head: SUPPORTING FAMILIES OF CHILDREN WITH AUTISM iii Acknowledgements I would like to thank my research chair, Mike Chovanec, Ph., LICSW, LMFT for his dedication and support during the process of writing this paper and with preparations for the research presentation. His knowledge and skills with revising and editing my paper were of quintessential importance in helping me complete this research paper. Second, I would like to thank my committee members, Jacki Harth, M., BCBA, LP and Janet Anderson, MSW, LICSW who were supportive and present during the revision process as well. Their expertise and commitment to this topic was imperative in helping me formulate my research paper.
I would like to extend a warm thank you to my MSW supervisor, Stephanie Palazolla, MSW, LICSW in her continued support of my topic, my research, and the writing of this paper. Without her guidance, reassurance, and support this production would be completely impossible. Additionally, I would like to thank my academic advisor and field instructor, Jane Hurley-Johncox, MSW, LICSW, LCSW for her continued support and reassurance that this process would be rewarding. Finally, I would like to thank all of the other research students who completed this process during the same timeframe as me as we were all supportive, understanding, and helpful to each other during this process.
Table of Contents Abstract…….ii Table of Contents……………………………………………………………………….5 Conceptual Framework………………………………………………………………………12 Methodology……………………………………………………………………………….22 Table 1: Demographics of Research Study………………………………………….22 Table 2: Questions and Responses to Interview…………………………………….26 Discussion……………………………………………………………………………………27 Researcher Reaction…………………………………………………………………………32 Limitations and Recommendations for Future Research……………………………………34 Implications for Social Work……………………………………………………………….42 Appendices:…………………………………………………………………………………44 Appendix A: Psychology Staff Approval Letter……………………………………44 Appendix B: Confidentiality and Consent Form………………………………….45 Appendix C: Research Questions………………………………………………….47 Running Head: SUPPORTING FAMILIES OF CHILDREN WITH AUTISM 2 Supporting Families of Children with Autism Spectrum Disorders Autism spectrum disorders (ASD) describe a variety of lifelong and pervasive developmental disorders that affect individuals and their family in a variety of ways (Cridland, et. Currently, the Center for Disease Control reports the prevalence of ASD to be one out of 88 individuals (Center for Disease Control, 2014) in the United States. The number of children being diagnosed with an ASD has increased over the past few years. At the current rate, diagnoses for ASD have been up 23% since 2009 as the Center for Disease Control reports.
These increases can be attributed to a better understanding of the interplay between genetics and the environment; a greater awareness of the disorder by physicians, teachers, and parents; and by the way children are being tested and diagnosed by clinicians such as psychologists and physicians (“Autism spectrum disorder,” 2014). Because of the number of children receiving diagnoses the cost of care has been on the rise. The average cost to care for a child with an ASD is estimated to be approximately $17,000 annually compared to a child without an ASD. These costs include health care, education, ASD- related therapy, family-coordinated services, and caregiver time providing care.
In total, the United State’s economic expenditure for the care of a child with ASD in 2011 was $9 billion (“Autism spectrum disorder”, 2014). More importantly, services for the treatment of ASD have been difficult to access for some families due to the deficit and expenditure of services and due to the increase of the number of individuals affected by ASD. This has become an expedited issue affecting families in the United States. To best support these families it is important to provide support to ensure that a continuity of care and treatment can be implemented to produce the best outcomes for their children.
Often times, this is achieved by incorporating a variety of professionals to serve the child as a team with the objective of alleviating the symptoms of ASD. Social work professionals, along with other mental health and medical professionals serve Running Head: SUPPORTING FAMILIES OF CHILDREN WITH AUTISM 3 families and children with autism and are greatly affected by the number of ASD diagnoses. These professionals have advocated for needed critical interventions and services. Social workers are advocates for access to resources for families of children with autism and function as imperative resource links to services for these families.
Even more, services for older children with an ASD are harder to locate as these services are typically reserved for young children. Therefore, it is important to link families to these services and provide support to them especially when bolstering their participation. Because the treatment of autism is an intensive process it is crucial to facilitate the caregivers and family members to take a proactive approach to their child’s treatment and to maintain and generalize their acquired skills. This greatly influences the continuity of care and treatment for a child’s progress and skill acquisition over time and it promotes the best possible clinical outcomes.
This research study identified some of the supports and challenges that caregivers face when implementing their child’s family skills training and treatment plan. It also identified in what ways families could be supported in their implementation of the treatment regimen. Further research on this topic will benefit professionals and families alike as it will make aware some of the obstacles families face when implementing their child’s treatment plan and some of the needs that families face. Further investigation will highlight some of the supports families need in order to be successful when working with their children for a more integrated treatment approach.
For the purpose of this study this researcher utilized qualitative interviews with caregivers of children diagnosed with an ASD. The intention was to investigate some of the pronounced challenges that impeded caregiver’s abilities to implement their child’s treatment plan as well as some of the necessary supports needed to assist families in facilitating these treatments. Running Head: SUPPORTING FAMILIES OF CHILDREN WITH AUTISM 4 Literature Review Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior (“Autism fact sheet”, 2014). When working with families of children who have an ASD it is important to integrate the family into the child’s treatment as it facilitates enduring learning and generalization of the learned skills.
Families are an integral part of their child’s treatment of an ASD and supporting families in that respect is vital for the child’s functioning and success. This literature review identified the difficulties associated with receiving an ASD diagnosis and discussed the necessity of autism treatments and the importance of family participation in those treatments. Additionally, this review focused on some of the research that has been conducted that highlights some of the challenges and obstacles families face when implementing their child’s treatment. Finally, this literature review investigated some of the ways families were supported and empowered to conduct their child’s established treatment regimen using family skills objectives.
Obtaining an ASD Diagnosis Obtaining an autism diagnosis can be devastating to any family and often times the diagnosis is just the beginning of a family’s journey. Mulligan et al. (2012) described the process of receiving an autism diagnosis as “…a uniquely stressful and emotionally intense experience for families” (p. Often times, families have a sense that something is wrong with their child, but have no insight as to specifically what could be wrong.
The authors reflected the response of their sample that “Most parents described a lengthy process of personal and professional inquiry prior to receiving a formal diagnosis” (Mulligan et al. This prompted families to pursue a formal assessment of their child in which families faced a considerable delay when waiting for an assessment team to receive a diagnosis. The authors Running Head: SUPPORTING FAMILIES OF CHILDREN WITH AUTISM 5 continue to highlight some of the difficulties with receiving a diagnosis as the assessment disclosure left them feeling exhausted and overwhelmed with information. When families receive a formal diagnosis, this is when the real emotions are expressed.
Parents reported a range of emotions after the diagnosis was given. Reactions ranged from grief and shock to validation, to empowerment (Mulligan et al. It is evident that the journey to receive a formal diagnosis is grueling for families and receiving a diagnosis is often just the first step. Additionally, families may further struggle to receive education and treatment surrounding the diagnosis immediately.
They may also struggle to secure the available social and emotional resources required to process the diagnosis. Banach et al. (2010) claim: “Receiving an autism spectrum diagnosis is a significant event in the lives of families. Stressful circumstances related to their child’s behavior, life changes required of adapting to the diagnosis, and difficulty accessing the necessary services and resources to support their family are common experiences” (p.
Further, Mulligan et al.