Families of Children with Autism Spectrum Disorder

Childcare Patterns and Issues for Families of Preschool Children with Autism

Children with autism spectrum disorders (ASD) are the most rapidly growing student population served in special education. As a result, several early childhood programs targeting such students have been established in the education sector. These programs are established to help meet the special needs of these children while promoting and enhancing their academic growth and achievements. In addition, family members play a critical role in the development and growth of these children with respect to meeting their special needs. Mereiou, Bland & Niemeyer (2015) state that the increase in diagnosis of ASD among children has made families and policymakers to champion for initiatives that enhance knowledge and understanding of their needs. Understanding these needs is essential toward improving the effectiveness of interventions and related services. Additionally, understanding the needs of these children help families to adopt suitable childcare patterns and deal with emerging issues effectively.

Background Information

ASD diagnosis among children has increased significantly in recent years and generated new demands on families and special needs educators. ASD account for the highest population of special needs students in the education sector. According to Zuckerman, Lindly, Bethell & Kuhlthau (2014) recent evidence has shown that diagnosis of autism spectrum disorders in children has become more prevalent. This condition is characterized by difficulties in social communication and behavior as well as impaired child and family functioning. Consequently, children diagnosed with autism spectrum disorders need intensive educational, healthcare, and behavioral services in comparison to normal children. These intensive services are in turn characterized by substantial financial, time, and care coordination investments. Families of children with autism spectrum disorders deal with issues relating to the condition and face the need to utilize childcare patterns that meet the children’s needs. Some of the major issues faced by families of children with ASD include adverse family employment and financial stressors (Zuckerman, Lindly, Bethell & Kuhlthau, 2014). These issues are primarily attributable to the complexities associated with providing care for these children given their special needs. 

Since ASD diagnosis in children has become more prevalent, stakeholders within the education sector have become increasingly concerned. The prevalence of ASD diagnosis has resulted in the development of early childhood programs that seek to meet the needs of these children. These programs also seek to promote the growth and development of these children in academics, behaviorally and socially. Early childhood programs are considered critical toward enhancing the outcomes of these children. However, services for these children are limited, which has resulted in calls for their inclusion in these programs during pre-school years. It is assumed that inclusion of these children during pre-school years would help enhance their social and language behaviors. In addition, families of children with ASD need to skills on suitable childcare practices and how to deal with issues relating to the condition. Current childcare patterns for these families are characterized by numerous difficulties resulting in poor health-related quality of life, family burden, poorer psychological wellbeing, financial stress, under/unemployment, and poorer physical and mental health (Zuckerman, Lindly, Bethell & Kuhlthau, 2014).

Research Context

As evident in the background information, families of children with autism face challenges relating to childcare patterns and issues brought by complexities of the condition. This comes at a time when there are minimal inclusive programs to promote inclusion of these children during pre-school years despite the potential benefits of such inclusion on their growth and development (Stahmer, Akshoomoff & Cunningham, 2011). Stein, Foran & Cermak (2011) contend that parenting a child with autism spectrum disorder can be a complex experience for parents. This is primarily because child diagnosis of autism spectrum disorders is a life-altering event to many parents. According to the findings of recent studies, families have reported experiences of sadness, denial, despair, anger, and confusion when their child is diagnosed with autism spectrum disorders (Stein, Foran & Cermak, 2011). These experiences are attributable to the impact of the condition on a child’s functioning and social communication and behavior. The impaired functioning of the child due to autism spectrum disorders generates new demands relating to childcare patterns.

While existing literature establishes that preschool children diagnosis with autism spectrum disorders generate impaired family functioning, studies on childcare patterns and issues faced by these families are limited. Most of the existing literature on preschool children with ASD has focused on the development of interventions and programs that promote their health and wellbeing. In addition, existing literature on this population focuses on the establishment of early intervention programs that would help promote smooth transition of these children to the educational setting (Forest, Horner, Lewis-Palmer & Todd, 2004). However, limited studies have been carried out to explore childcare patterns and issues faced by families of these children. This implies that there is a gap in literature on childcare patterns and issues for families of children with ASD.

Significance of the Study

This study seeks to address the current gap in existing literature on the issue of childcare patterns and issues for families of children with autism spectrum disorder. The study will be conducted on the premise that childcare patterns and issues for families have an impact on early intervention programs for preschool children with autism spectrum disorders. Stahmer, Collings & Palinkas (2005) state that treatment studies have found that early interventions for preschool children with ASD results in substantial gains. Coogle, Guerette & Hanline (2013) argue that early intervention programs for these children has the potential of enhancing their quality of life through improving development and preventing disabling conditions or developmental delays. Consequently, there has been an increased emphasis on the development and use of these interventions. However, childcare patterns and issues faced by these families have an impact on the effectiveness of early interventions. This is primarily because interventional approaches for children with ASD need to be developmentally suitable (Zwaigenbaum et al., 2015). The suitability of such approaches is largely dependent on childcare patterns and issues faced by these families. Therefore, examining these patterns and issues plays an important role toward enhancing the effectiveness of early intervention approaches for children with ASD.

Purpose of the Study

This study seeks to explore childcare patterns and issues for families of preschool children with ASD. The exploration will be conducted on the premise that these patterns and issues have significant impacts on the effectiveness of early intervention approaches adopted by families. The study seeks to address the existing gap in literature on the experiences of families with preschool children diagnosed with the condition. The exploration of this issue provides a suitable foundation for promoting the smooth transition of these children to school and their inclusion in the educational setting.

Research Questions

To help address the purpose of the study, the researcher has identified one research question that will guide the study. The main research question is; “What are the childcare patterns and issues for families of preschool children with autism spectrum disorders?” This main research question is supported by three subsidiary research questions as follows…

1. What are the experiences of families of preschool children with ASD?

2. How does diagnosis of ASD in a preschool child affect childcare approaches?

3. What are some of the major issues experienced by families of children with ASD?

Research Methods

According to Creswell (2014), one of the most important components toward achieving the purpose of a study is utilizing a suitable research methodology and approach. The selection of a research methodology/approach is influenced by the nature of the phenomenon under investigation. Additionally, the choice on research methodology is influenced by the type of data to be collected and analyzed by the investigator. 

The nature of the phenomenon under investigation in this study is exploratory, which implies that qualitative research methodology will be employed. Creswell (2014) notes that qualitative research methodology is suitable for issues that are descriptive or exploratory. Qualitative research entails collecting non-numerical data and is suitable for answering ‘what’, ‘why’, and ‘how’ questions. The main research question and subsidiary questions for this study are ‘what’ and ‘how’ questions, which implies that qualitative methodology is a suitable research approach or methodology. 

The investigator seeks to conduct a qualitative survey research on the phenomenon of childcare patterns and issues for families of preschool children with autism spectrum disorders. Qualitative survey research approach is commonly used in empirical research and entails the study of a population through observation of members (Jansen, 2010). In this case, the study will be carried out among families of preschool children with ASD to understand their experiences, childcare patterns, and issues. Qualitative survey research is based on ethnography, which is the study of the behaviors, perceptions, and interactions that take place within organizations, teams, communities, and groups (Reeves, Kuper & Hodges, 2008). Ethnography, which is rooted in anthropology, focuses on providing rich, holistic insights in the views and actions of people relating to the issue under investigation. In this case, the views and experiences of families of preschool children with ASD will provide rich, holistic insights on this issue, help in answering the research questions, and address the gap in existing literature. 

For data collection, the researcher will conduct observations and interviews on a group of families of children with autism spectrum disorders. Since this study is based on ethnography, observations and interviews are suitable data collection instruments that help obtain rich data from participants (Reeves, Peller, Goldman & Kitto, 2013). The use of families of children with ASD as participants in this research is geared toward generating rich data. Ponto (2015) states that observations and interviews help to generate rich from individuals or groups when conducting qualitative survey research.

This study will be carried out in Strathclyde, which has been identified as an ideal location. Strathclyde is considered suitable for the study since it has different educational institutes for children with autism spectrum disorders. Therefore, the researcher will easily identify relevant research groups in this area for the study. In addition, the researcher has selected this location because of his experience working as teacher in an autism institute for children. The researcher seeks to utilize his experience as a teacher in an autism institute for children to collect and analyze data for the study. Through this experience, the researcher will formulate relevant open-ended questions for the interviews, which will help yield rich data from the study’s participants.