For most children, these conditions are chronic and require lifetime management, whereas in some children with early intervention, research evidence suggests that 3% to 25% of children eventually lose the diagnosis of ASD when they are older (DeAngelis, 2019). Thirteen percent of young people were found to be free of ASD symptoms in a large-scale retrospective parent survey (Blumberg et al., 2016). Similarly, 9% of those initially diagnosed with ASD at age 2 were found to be symptom-free at age 19 (Anderson, Liang, & Lord, 2014).
Children with ASD currently receive fragmented care, which affects their health and well-being (Yerramsetti, 2017). Studies on the parental experience of raising a child with ASD are limited. The purpose of the current article is to increase awareness of the issues and challenges faced by parents on getting a diagnosis and managing symptoms of ASD. The current article aims to provide recommendations for future research on how society at large can understand the perception of parents of children with ASD and guide them from early diagnosis to follow-up care.
According to the Autism and Developmental Disabilities Monitoring Network, the overall prevalence of ASD in children age 8 among several communities in the United States has increased from 1 in 150 children during 2000 to 2002, to 1 in 68 children in 2010 to 2012. In 2018, the prevalence of ASD increased to 1 in 59 children. The characteristics of ASD have been seen in the ratio of 4.5 males:1 female over a period of 6 years between 2006 and 2012 (Baio et al., 2018).
The increasing prevalence of ASD has put pressure on the field of autism to generate productive and predictive theories. In the literature, the vaccine hypothesis is the most widely circulated theory, which is thought to be responsible for the sharp increase in the prevalence of ASD. This view has generated enormous debate regarding the possible association between vaccination and the development of ASD. An evidence-based meta-analysis of cohort data concluded there was no causal link between vaccination and ASD (odds ratio [OR] = 0.91; 95% confidence interval [CI] [0.68, 1.20]) or autism (OR = 0.99; 95% CI [0.92, 1.06]). There was no relationship between ASD and the measles/mumps/rubella (MMR) vaccine (OR = 0.84; 95% CI [0.70, 1.01]). Similarly, the case-control data revealed no evidence for increased risk of developing ASD or autism following MMR exposure, when grouped by exposure type (OR = 0.85, 95% CI [0.76, 0.95]; p = 0.01) or condition (OR = 0.90, 95% CI [0.83, 0.98]; p = 0.02). Findings of this meta-analysis support that vaccination does not cause ASD or autism (Taylor, Swerdfeger, & Eslick, 2014).
According to the Centers for Disease Control and Prevention (CDC; n.d.), the prevalence of ASD poses several challenges due to lack of biological diagnostic markers, changing diagnostic criteria, and variation in symptom presentation (Hill, Zuckerman, & Fombonne, 2016). The increased prevalence of ASD resulted from changes in diagnostic criteria of including other pervasive disorders and Asperger syndrome in the autism spectrum. Furthermore, genetic testing is considered an important component in the evaluation and management of children with ASD (Schaefer, 2016). The prevalence of genetic abnormalities in children with ASD is 30% to 40% (Schaefer et al., 2013). The American Academy of Pediatrics (AAP; 2013) recommended genetic testing if children possess risk factors (Moeschler, Shevell, & Committee on Genetics, 2014).
Studies on the experience of parents receiving their child's diagnosis are limited (Chao et al., 2018). Many parents have expressed dissatisfaction with the diagnostic process (Chamak, Bonniau, Oudaya, & Ehrenberg, 2011; Crane, Chester, Goddard, Henry, & Hill, 2016; Ho, Yi, Griffiths, Chan, & Murray, 2014). A major reason for dissatisfaction is due to lack of available specialized services (Crane et al., 2016). The physician workforce provides care for >1.2 million patients with ASD younger than 21. The American Academy of Child and Adolescent Psychiatry (2016) indicated there were approximately 8,300 child and adolescent psychiatrists in 2016. There were 1,290 pediatric neurologists in 2018 (Gee & Gee, 2018) and 800 developmental-behavioral pediatricians in 2016 (Soares, Baum, & Patel, 2017). This is a ratio of patients to specialists of 115:1, which creates long wait lists for parents to get their child evaluated for ASD.
The long wait list delays the process of obtaining diagnosis and initiation of proper treatment and therapies (Gordon-Lipkin, Foster, & Peacock, 2016). In addition, fragmentation of care and disconnections between the medical system act as barriers to effective care and management of ASD (Brookman-Frazee, Baker-Ericzén, Stadnick, & Taylor, 2012). As a result, families receive different clinical information and treatment plans for their child's comorbidities (Russell & McCloskey, 2016; Zablotsky, Kalb, Freedman, Vasa, & Stuart, 2014).
Signs and Symptoms
Initial signs and symptoms of ASD are present at the early developmental stage, but these symptoms do not become difficult to manage until they involve social and behavioral patterns and the child falls behind in meeting the social, educational, and/or other demands of life. Symptoms of ASD overlap with other psychiatric symptoms. The average age of diagnosis of ASD and PPD-NOS in the United States is 2 years and 11 months. However, the age of diagnosis can vary from 1 year and 2 months to 9 years and 11 months (Adelman & Kubiszyn, 2017). In a study done in Taiwan, the average age initial symptoms were noticed by parents in children was 5.31 years and the mean age at the time of diagnosis was 8.5 years (Chao et al., 2018).
Parents of children with ASD face numerous challenges, such as limited awareness of disease condition, limited resources, limited support system, limited health care providers, and limited long-term management and care. Parents of children with ASD experience confusion and difficulty in understanding their child's behavior during the pre-diagnosis phase. Similarly, parents feel the obligation to obtain professional services and anxiety in obtaining a second opinion during the diagnosis phase.
The post-diagnosis period includes acceptance of the diagnosis, further adjustment, and long-term management (Chao et al., 2018). In the process of getting diagnosed, genetic testing in children with ASD is not widely conducted due to lack of awareness, insurance coverage, and transportation (Vande Wydeven, Kwan, Hardan, & Bernstein, 2012). Despite these barriers, parents perceive the importance of genetic testing and have demonstrated an interest in seeking genetic testing services (Narcisa et al., 2013). Seventy-eight percent of parents reported that genetic testing results did not change the treatment modality in their children and 11% of parents reported that genetic testing results changed the clinical management of their child's ASD (Harrington, Emuren, Restaino, & Schrier Vergano, 2018).
Parents reported being emotionally traumatized by their child's diagnosis. Parents also reported being overwhelmed and not knowing how to cope with the situation (Galpin et al., 2018). Parenting a child with ASD can be more stressful than parenting a child without ASD or a child with other developmental conditions (Craig et al., 2016). Maternal stress is related to factors such as severity of symptoms and challenging behaviors (McStay, Dissanayake, Scheeren, Koot, & Begeer, 2014). Limited research has focused on the role of social and professional support that plays in parents' well-being (Vasilopoulou & Nisbet, 2016).
A brief survey was conducted with 139 parents by Galpin et al. (2018) to examine why some families feel supported and others do not and their viewpoints on the support systems they have and what they would wish for. Families were divided into the feeling supported group (n = 16) and the feeling unsupported group (n = 16). The most common type of support families received came from relatives and friends. Parents who feel unsupported did not receive support from their partners, local support groups, school staff, and other professionals. Parents belonging to the feeling unsupported group wished for more understanding of their child's communication and behavior. Parents also felt the need to receive respite and parenting advice.
Research shows that parents receive support from other parents, which proved to be significantly helpful. Limited social support has been linked to increased stress level and decreased parenting efficacy (Barker et al., 2011). Lack of external support can have a significant impact on parents' well-being. Parents experience anxiety, insecurity related to their child's future, and an increased level of stress, which could lead to an increase in isolation and further reduction of social support (Schaaf, Toth-Cohen, Johnson, Outten, & Benevides, 2011). Therefore, it is important to understand parents' perspectives of the disease process of their children and support systems to improve parental and family well-being.
Parents must face everyday challenges of parenting children with ASD. Parents must cope with their child's unique behavior of food selection, difficulties in self-care, such as toileting and brushing teeth, and disruptions in sleep patterns. Parents also reported a concern of sense of community and togetherness. Parents felt isolated and alienated. Parents have reported a need for respite and self-care, such as doctor's appointments for themselves and other activities. Parents have trouble in transportation services and have higher possibilities of missing out on social activities, such as going to church, and family outings. Furthermore, parents reported a need for constant pressing of the health care system and fighting for services. Therapy and other services are not easily accessible to parents. Some parents reported not having adequate time and support to keep asking for help and fighting for services. Few parents reported that they were told that they would not receive the services they have been waiting for (Chao et al., 2018; Galpin et al., 2018).
Parents reported that their children spend more time at school. Parents believe there is a limited collaboration with schools, which has a negative impact on their children's progress in school. Parents also wished to be in close communication with the school system to help children reach their optimum potential in academics and social personal development. In addition, parents felt the need to have awareness and knowledge regarding ASD (AAP, 2013; Galpin et al., 2018).
Parents have recommended that service providers adopt a family-centered approach. The support they receive does not fit their lives. Parents also believe whole family support is lacking. The financial help from the health council is limited to the child with ASD. Lack of focus on the whole family seems to isolate other family members and does not nurture sibling understanding and relationships. Parents highlighted the need for tailored post-diagnostic long-term management and support targeted toward the family. The best support parents could get is a tool to navigate the system that one has to operate as a parent (Chao et al., 2018; Galpin et al., 2018). Health care providers should schedule follow-up appointments with these families in a few weeks after diagnosis to provide further information on management and formulate a plan of care for the child.
Primary care providers and specialists acknowledge the fragmented health system and report that they have little to offer patients with ASD and their families (Yerramsetti, 2017). The literature reveals that primary care providers have a limited role in the care and management of the ASD population due to insufficient training (Zablotsky et al., 2014). Specialists reported that they have difficulties in managing other comorbidities of the ASD population (Kohane et al., 2012). Health care providers need the knowledge and skills for early identification, diagnosis, and management of children with ASD.
Management of ASD needs a comprehensive and coordinated developmental evaluation. Pertinent people in a child's life who can conduct developmental evaluations are parents, teachers, social workers, nurses, primary care physicians, psychologists, and speech-language pathologists. Most parents prefer the faster and easier route in getting the diagnosis so that early intervention can be initiated. Early intervention can have a significant impact on a child's development and may avoid expensive therapies in the future (CDC, 2019). Parents are concerned about their child's future and this could be addressed by providing social and financial support (Chao et al., 2018). Specialized developmental pediatricians use data from the developmental evaluation to make their diagnosis of ASD (AAP, 2013). Primary care for patients with ASD has been recognized by federal policymakers (Interagency Autism Coordinating Committee [IACC], 2017). The primary care team may include health care providers such as physicians, nurse practitioners, and physician assistants. There was a discussion for the need to advance primary care for patients with ASD at the most recent IACC meeting in 2018 (IACC, 2017; Kong, Liu, Chien, Batalden, & Hirsh, 2019).
Future nursing research implications should indicate that primary care providers who serve as home clinics for patients with ASD need to have adequate training and provide effective care to the child with ASD and resources for his/her family. The primary care team needs to provide comprehensive developmental evaluations as early as possible for children who are demonstrating ASD symptoms. Primary care providers should order therapy and behavior services for children suspected to be on the spectrum of autism. Children should not wait to get a diagnosis to start therapies. Families need to be approached as a whole, and support and guidance should be provided by the primary care team. Parents and siblings should have training on coping with their family member with ASD. Teachers who participate in the child's teaching and learning activities should also have formal training regarding needs of children with ASD.