Risks and Protector Factors: Access to a Diagnosis and Services for a Child With Autism

Thursday, 27 July 2017: 2:30 PM

Susan A. Bonis, PhD
College of Nursing, University of Wisconsin-Milwaukee, Elm Grove, WI, USA

Purpose: Autism spectrum disorder (ASD) is a growing global issue (Autism Speaks, 2016; World Health Organization, 2016) characterized by verbal and nonverbal social communication deficits, including difficulty following rules for conversation and forming and maintaining relationships (APA, 2013). The child’s ability to effectively engage in social and academic activities is impacted. Children often fall victim to criticism and bullying and respond with isolation, aggression, hostility, or self-injury (Schroeder, et al., 2014). These difficulties are compounded by inflexible adherence to routines and excessive response to sensory input (Author, 2012; 2016; Author & Sawin, 2016). A projected increase of 6-15% in ASD diagnoses per year makes ASD the fastest growing developmental disability in the country. These alarming statistics are associated with a projected increase in cost of ASD services from $175-262 billion per year to $200-400 billion per year (CDC, 2015).

One in 68 children in the United States and one in 160 children worldwide (World Health Organization, 2016) are diagnosed with autism spectrum disorder (ASD) (Baio, 2014; Childstats, 2015). Greater than 80% of their parents report they feel “stressed beyond their limits” (Bitsika, et al., 2013, p. 540). Their ability to parent effectively is affected, as well as the ability to manage their child’s special needs and maintain the marital relationship (Ludlow, et al., 2011). Although parental stress has primarily been attributed to the child’s challenging behaviors, few studies have focused on other factors that impact parental stress, such as seeking a diagnosis for their child and accessing services.

Many parents spend years moving from one healthcare provider to another in an attempt to find answers for their child’s challenging behavioral and communication issues (Silva, et al., 2012), only to become increasingly concerned by the child’s delayed development and odd repetitive patterns (Braddock, et al., 2014; Moh, et al., 2012; Nealy, et al., 2012). Healthcare providers frequently attribute the child’s behavior to poor parenting and disregard parental concerns (Nealy, et al., 2012; Silva, et al., 2012).

Although some researchers have specifically studied age of diagnosis and have not found any association between later diagnosis and ethnic background (Williams, et al., 2015), others have identified that African-American and Hispanic children are diagnosed later than other children with similar symptoms (Fountain, 2011; Jo, et al., 2015; 2010; Rosenberg, et al., 2011; Valicenti-McDermott, et al., 2012). Researchers are in agreement that children from lower socioeconomic backgrounds (Harstad, et al., 2013; Rosenberg, et al., 2011; Valicenti-McDermott, 2012) and rural areas (Braddock, et al., 2014; Harstad, et al., 2013; Rosenberg, et al., 2011) also receive later diagnoses. Although parents from all backgrounds feel a sense of disparity related to autism diagnoses and care, specific factors related to access and utilization of services are poorly understood (Williams, et al., 2015).

Autism interventional services are effective in helping parents learn what works and what does not work in managing their child’s behaviors (Thomas, et al., 2007). Frequent and consistent integration of methods learned in these programs have been successful in managing challenging behaviors (Steiner, et al., 2012) and improving social and communication skills (Siller, et al., 2013). Confidence and parenting self-efficacy increases and parents are better able to manage challenging behaviors with fewer conflicts (Bekhet, et al., 2012; Siller, et al., 2013; Whittingham, et al., 2009). Quality of the parent-child relationship improves (Whittingham, et al., 2009) and parents are better able to meet the overall needs of their child (Bekhet, et al., 2012). Although geographical availability and accessibility, cost and coverage by insurance (Carlon, et al., 2013; 2015; Rivard, et al., 2015) have been proposed as potential factors that affect use of services, little is known about parental needs and services available to meet those needs. Accordingly, the purpose of this study is to identify factors that affect access to diagnosis and services for parents of children with ASD. Knowing more about parental needs and access to services will contribute to development of efficacious and appropriate means to meet the unique needs of these parents and their children with autism spectrum disorder

Methods: Focus groups and individual interviews were conducted with parents of children with ASD who were ages 3-37 years, who were ethnically and socioeconomically diverse, and highly educated. A semi-structured discussion guide was used that was developed with input from an advisory panel composed of parents of children with ASD. Discussion questions were focused on: 1) factors that contribute to parent seeking healthcare for their child, 2) factors that affect access to an ASD diagnosis 3) parent responses to the ASD diagnosis, and 4) factors that affect access to ASD service. All discussions were audio-recorded, transcribed, coded and thematically analyzed using a reflexive approach and inductive reasoning. The resultant themes were organized according to the framework of the Individual and Family Self-management Theory. APSS-PC ® version 20 was used to analyze thematic similarities and differences across and within demographic groups (ethnic, educational, and level of income).

Results: APSS-PC ® version 20 was used to determine frequencies, means and perform statistical tests. Analysis revealed parents visited their child’s healthcare provider 3-30 times while seeking an ASD diagnosis over a period of 2-10 years. A priori Chi Square revealed no significant differences between income and ethnicity, education and ethnicity, and income and education. Mann-Whitney was then used, and no significant relationship was found between race/ethnicity and age of ASD diagnosis (t=1.49; df=31; p= .144) and no significant relationship existed between race/ethnicity and wait time (t=-1.718; df=27; p= .097). Contrary to published research findings, 55% of parents reported feeling their child’s healthcare provider listened to their concerns, 48% had a good understanding of ASD, 50% respected their concerns and 48% were supportive of their concerns. However, 62% of parents believed their HCP had a negative view of ASD, which is consistent with previous findings. Thematic analysis of qualitative data revealed knowledge, awareness, acceptance and stigma were factors that affected access to diagnosis and services across all ethnic and socioeconomic groups. Access to diagnosis was earlier for children with profound physical delays and comorbid conditions and was delayed for higher functioning children. Mothers were more proactive than fathers in seeking answers for the child’s challenging behaviors and delays, with African-American mothers being particularly persistent in accessing services for their children. Fathers frequently denied the diagnosis, which delayed access to services and affected the marital relationship. Parents also talked about needing support and networking opportunities, educational services to help manage their child’s care, and professional services to assist in executive and transitional care of the child.

Conclusion: In this highly educated sample, parents across ethic and socioeconomic backgrounds struggled to access a diagnosis for their child. Healthcare providers who are knowledgeable and supportive can facilitate earlier referral, diagnosis, and entry into interventional services. This is critically important, as early diagnosis and treatment are associated with improved brain function, enhanced social communication, and decreased need for costly services as the child develops. Parents also waited up to a year or more for intervention appointments post-diagnosis. Findings of this study will be used to create a film production of parents talking about their experiences accessing diagnoses and services for their child. The film will be used as an intervention to facilitate early diagnosis and access to services, shed light on the need for parent education and support services, and to affect policy and government budget allocations for autism-related services.