Following the diagnosis, parents may experience either positive or negative emotional reactions. Research indicates that parents experience the following negative reactions to receiving an ASD diagnosis: shock, anger, hopelessness, denial, grief, sadness, frustration, anxiety, and confusion (Cameron, Snowdon, & Orr, 1992; Goff et al., 2013; Graungaard & Skov, 2007; Hasnat & Graves, 2000; Mansell & Morris, 2004; Mitchell & Holdt, 2014; Poehlmann et al., 2005). Following a diagnosis of ASD, parents may experience grief that their child will never be “normal” (Cameron et al., 1992; Poehlmann et al., 2005). They may experience a sense of loss, as they have to alter their image of the child (Goff et al., 2013). Additionally, parents may worry about their child’s future (Mansell & Morris, 2004). Specifically, parents worry about the amount of care and support their child may need during their life and how to provide this (Mitchell & Holdt, 2014).

Though some parents may react negatively to their child’s diagnosis, the majority of parents report experiencing a sense of relief (Mansell & Morris, 2004; Osborne & Reed, 2008). They feel relieved because their concerns regarding their child’s development and/or behavior were validated (Avdi, Griffin, & Brough, 2000; Mulligan et al., 2012; Watson, 2008). Parents also report experiencing a sense of relief because a diagnosis allows them to obtain services for their child (Osborne & Reed, 2008).

Prior to a diagnosis of ASD, parents may blame themselves and question if their parenting caused the child’s delay or behavior (Mulligan et al., 2012; Watson, 2008). Mothers may question if they did something wrong during their pregnancy or immediately after their child’s birth. For instance, mothers have reported that they worried that their illnesses or infections during pregnancy caused their child’s behavioral problems (Watson, 2008). A diagnosis helps alleviate parental guilt and personal blame (Mansell & Morris, 2004; Midence & O’Neill, 1999; Watson, 2008). It is vital that professionals allow time for parents to express these concerns and provide information to reduce these concerns and correct misbeliefs, especially pertaining to the causes of ASD.

Despite the parents’ initial reaction to their child’s diagnosis, having a child with ASD frequently causes parental stress (Dillenburger, Keenan, Doherty, Byrne, & Gallagher, 2010). Therefore, support throughout the child’s life is needed in order to assist the parent with his/her stress. It is important to note that studies regarding parental support are primarily based in the UK. Thus, access to services and availability of services may vary from the USA.

Studies indicate that over half of parents have been offered help or are currently receiving services for their child (Osborne & Reed, 2008; Renty & Roeyers, 2006). Despite the number of parents receiving professional assistance, many parents report that they have never received support (Braiden et al., 2010; Osborne & Reed, 2008). Furthermore, parents report a time lapse between receiving the diagnosis and obtaining services (Braiden et al., 2010).

Mulligan et al. (2012) interviewed parents, who had children diagnosed with ASD, regarding their service utilization. Parents reported that services were often limited and difficult to obtain. Many services had strict admission criteria, long wait lists, and/or provided few resources. Additionally, professionals did not assist parents in obtaining services for their child. Following the diagnosis, the professional informed the parent of services he/she would need to obtain for the child; however, they did not provide any referrals.

Several studies have examined which services parents would like to receive. Overall, parents want to receive more support and services for their child (Bromley, Hare, Davison, & Emerson, 2004). Therefore, professionals should provide information regarding supports and services to parents throughout their lifetime. Many parents feel that they do not have enough knowledge about ASD and would like more information regarding the disorder (Dillenburger et al., 2010; Osborne & Reed, 2008; Renty & Roeyers, 2006). Respite services for children can be limited, as many are only available once a month or do not accept adolescents (Hall & Graff, 2010). Therefore, many parents have expressed a need for more respite services (Baile & Costantini, 2013; Bromley et al., 2004; Dillenburger et al., 2010; Osborne & Reed, 2008). Parents want more programs for children with ASD that they could attend after school, on the weekends, or during school breaks (Siklos & Kerns, 2006). Parents also express a desire to have more training in applied behavior analysis (ABA) or behavior therapy in order to better manage their child’s behavior (Bromley et al., 2004; Dillenburger et al., 2010; Osborne & Reed, 2008).

Furthermore, parents suggest that professionals provide them with referrals to individual therapy for themselves to assist them in coping with the diagnosis (Mansell & Morris, 2004). Whole family supports such as group or family therapy are also recommended by parents to assist the family with stressors related to their child’s diagnosis (Hall & Graff, 2010; Osborne & Reed, 2008). Additional services parents would like to receive include childcare (Bromley et al., 2004; Hall & Graff, 2010), a case manager to assist with the coordination of services (Mulligan et al., 2012), educational support, support groups, a professional to assess their child on a regular basis (Osborne & Reed, 2008), a family advocate, ABA schools/centers, multidisciplinary support (Dillenburger et al., 2010), and transportation (Bromley et al., 2004).

Parents who have children with ASD may experience financial strain. A parent may be unable to work due to the amount of time he/she has to dedicate to obtaining services for the child (Mitchell & Holdt, 2014). Insurance companies may not cover behavior therapy and/or diagnostic evaluations (Hall & Graff, 2010). Additionally, parents need financial assistance for other treatments (Siklos & Kerns, 2006). Overall, parents want more financial support for their children (Bromley et al., 2004; Hall & Graff, 2010; Renty & Roeyers, 2006).

Many parents experience distress over their child’s future (Siklos & Kerns, 2006). Parents worry about their child’s ability to financially support themselves when he/she is an adult (Hall & Graff, 2010). Thus, parents need assistance planning for their child’s future income. Other future concerns include medical support, obtaining employment as an adult, and the child’s ability to live independently as an adult (Renty & Roeyers, 2006). Due to these future concerns, parents need services to assist with their child’s transition to adulthood.

In order to continually identify best practice strategies to implement during the diagnostic process, professionals must have an empirically based understanding of the variables that influence parent and caregiver levels of satisfaction and stress. One area of focus within the literature base is the diversity of participants from several different countries. A significant portion of the research is from the UK followed by the USA, with other investigations based in regions such as Canada, France, Australia, India, Italy, and Singapore. This diversity of participants is desirable because the global experiences of families can be evaluated, potentially leading to large-scale generalizability. However, this regional diversity can also create further discrepancies within a developing research base. Given some of the likely differences in health care systems related to service delivery and overall patient satisfaction (Thomson, Osborn, Squires, & Jun, 2013), the ability to generalize specific results among countries may be somewhat limited.

Although it appears likely that shared experiences (i.e., satisfaction/dissatisfaction with diagnostic process) may occur regardless of country of origin , it is possible that other cultural/regional factors specific to systems of care could have an influence on outcomes. For example, Daley (2004) described that families in India often experience limited access to health care providers who are qualified to diagnose ASD. As a result, some individuals seeking evaluations travel several days to receive care (Daley, 2004). Certainly, in the time since this study, greater access to professionals specializing in ASD may have occurred. However, the availability and/or quality of specialized services in non-Western countries can be different than those in Western countries. Furthermore, in a review of health care system performance indicators among 14 industrialized countries, UK citizens had notably more favorable views of their public health system. In contrast, US citizens had the least favorable views compared to the other assessed countries. Although the association between global perspectives and more specific clinical/health experiences is unknown, it is worthwhile to consider the potential implications regarding the countries who have contributed most readily to the research base. Going forward, research should continue to explore both the global and cultural/regional-specific experiences of individuals navigating the ASD diagnostic process. In this pursuit, researchers may need to delve further into the complexities and norms of health care systems within and between countries in order to better understand the variables that could influence diagnostic perceptions. Further evaluation of the extent to which these regional and cultural differences impact upon overall diagnostic experiences could provide greater conceptual clarity.

In addition to some of the previously identified correlates of overall satisfaction (e.g., age at diagnosis, wait time, number of professional encounters, relationship with professionals), future investigations should also explore the potential impact of additional variables. Numerous studies have examined stress (e.g., Baker-Ericzén, Brookman-Frazee, & Stahmer, 2005; Hayes & Watson, 2013; Ritzema & Sladeczek, 2011; Rivard, Terroux, Parent-Boursier, & Mercier, 2014) and psychological functioning (e.g., Harper, Dyches, Harper, Roper, & South, 2013; Minnes, Perry, & Weiss, 2015) in parents of children with ASD, and it would be noteworthy to assess the impact of these variables on ratings of overall satisfaction. It is possible that extraneous factors such as family stressors or general parenting stress may impact perceptions of the diagnostic process. Similarly, further study of child-specific variables could better inform practice. Considering that the level of ASD severity has been found to be a significant predictor of parental stress (Lyons, Leon, Phelps, & Dunleavy, 2010), future studies could explore the possible moderating impact of disability severity on parental stress and overall satisfaction during the diagnostic process. Further investigation of these parent and child variables may help professionals to better understand, predict, and plan for future diagnostic experiences.

Additionally, many of the core studies in this area have included qualitative (e.g., Abbott et al., 2013; Goin-Kochel et al., 2006; Howlin & Asgharian, 1999; Osborne & Reed, 2008; Punshon et al., 2009), quantitative (e.g., De Alba & Bodfish, 2011; Harrington et al., 2006; Howlin & Moore, 1997; Jones et al., 2014; Siklos & Kerns, 2007; Smith et al., 1994), and mixed-method research designs (e.g., Chamak et al., 2011; Mansell & Morris, 2004; Molteni & Maggiolini, 2014). Many qualitative studies have provided rich information that assists in understanding the themes and experiences of parents and families who encounter the ASD diagnostic process. Quantitative studies have also explored a range of issues related to satisfaction with the diagnostic process. In the Daniels and Mandell (2014) review of literature that assessed disparities in age at ASD diagnosis, they suggested that many of the identified disparities may be associated with methodological inconsistencies. For example, archival or administrative data (i.e., insurance claims or school/health records) were utilized in numerous studies whereas other researchers pursued primary data collection. Among those researchers who engaged in primary data collection, sampling techniques varied. Overall, it appears important to build upon the methodological rigor of future research both quantitatively and qualitatively. One particular emphasis should be on further development of the constructs of satisfaction and stress for individuals navigating the ASD diagnostic process.

As noted, many variables (e.g., age of diagnosis, wait time, professional response to initial concerns, professional relationship, diagnostic severity/subtype) have been examined related to overall satisfaction. Further, several other variables have been posited as additional correlates of overall satisfaction with the diagnostic process. Assessing the contribution of each of these factors within the overall construct of satisfaction will enhance conceptual and theoretical understanding. Several studies (e.g., Brogan & Knussen, 2003; Jones et al., 2014; Moh & Magiati, 2012; Siklos & Kerns, 2007) have explored predictors and correlates of satisfaction through multivariate analysis. Continued exploration and confirmation of findings are necessary to further develop and refine theory.