Academic journal article Journal of Marital and Family Therapy

Exploring Partner Intimacy among Couples Raising Children on the Autism Spectrum: A Grounded Theory Investigation

Academic journal article Journal of Marital and Family Therapy

Exploring Partner Intimacy among Couples Raising Children on the Autism Spectrum: A Grounded Theory Investigation

Article excerpt

According to the Centers for Disease Control and Prevention (CDC), autism spectrum disorder (ASD) affects one out of every 68 children in the United States (and one in 42 boys), over double the figure of one out of every 150 children reported by the CDC just a decade ago (CDC, 2012). Research also demonstrates that ASD affects not only the children who have been diagnosed with a disorder but also those who have been charged with caring for them. In particular, studies have found that the stressors of caring for a child with ASD can negatively impact the physical and psychological well-being of mothers (Allik, Larsson, & Smedje, 2006; Barker et al., 2011; Hastings, 2003), fathers (Hastings, 2003; Mugno, Ruta, D'Arrigo, & Mazzone, 2007), and other primary caregivers (Higgins, Bailey, & Pearce, 2005).

Additionally, studies focused on how couple dyads experience and are affected by raising children with ASD suggest that these couples are susceptible to more negative relationship outcomes, including less experiences of intimacy in their relationships, than couples raising neuro-typical children (Gau et al., 2012; Hartley et al., 2010; Myers, Mackintosh, & Goin-Kochel, 2009). However, other research indicates no significant difference in experiences of intimacy among couples raising children with ASD as compared to couples raising neuro-typical children (Freedman, Kalb, Zablotsky, & Stuart, 2012) and instead demonstrates that couples of children with ASD may experience an increased sense of intimacy despite the unique stressors associated with caring for children with ASD (Bayat, 2007; Cowan, 2010; Hock, Timm, & Ramisch, 2012; Marciano, Drasgow, & Carlson, 2015).

Given these differing results, we became interested in exploring why it is that some couples caring for children with ASD experienced more intimacy in their relationships than others. Of particular interest to us were the processes by which couples raising children with ASD came to experience more or less partner intimacy, what outside factors influenced these processes, and how these processes change over time.

ASD and Associated Parental Stressors

Autism spectrum disorder is a developmental disability that manifests itself through impairments in social communication and social interaction, as well as through patterns of repetitive and restricted behaviors (American Psychiatric Association [APA], 2013). Individuals with ASD may vary greatly in terms of symptomatology and comorbid diagnoses (e.g., ADHD, anxiety disorders, intellectual disability) thus giving credence to the term "spectrum."

Unlike other developmental disabilities, ASD has no known cause and is not necessarily apparent at birth. Rather, ASD symptoms are more commonly noted during the first 1224 months of life (APA, 2013). Furthermore, one cannot necessarily look at a child with ASD and know that he or she is not neuro-typical. As such, parents may experience the ambiguous loss (Boss, 2006) of their child with ASD when the child shows signs of delayed development and is no longer socially or emotionally who they used to be and/or the child has the appearance of neurotypical development but is not, in fact, developing neuro-typically. This paradox of the simultaneous presence and absence of children with ASD can keep parents from knowing how to adequately grieve their losses or even knowing what losses they should grieve (O'Brien, 2007).

Additionally, parents of children with ASD must often deal with the presentation of particular disruptive forms of ASD-related behaviors. For example, children with ASD frequently display various types of self-stimulatory/self-soothing behaviors (e.g., hand flapping, body rocking) and stereotypic behaviors, such as fixating on certain parts of objects (e.g., the wheels on a toy car) or playing with their toys in only certain ritualized ways (e.g., repeatedly having to line up one's toys in a particular and unchangeable fashion). …

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