Introduction

Consider the following example. A young man with autism spectrum disorder (ASD) graduates from high school and his previous services (e.g., school, intervention center, medical services) have been terminated because of his age. He is on waitlists for several services, but in the meantime, must remain at home full time. Being unable to afford private full-time care for her son, his mother must take a leave from work to stay at home with him. This creates financial strain on the family, who now must rely on a sole income. Three months after graduation, his mother notices that his self-stimulatory behaviors have increased, and her son has regressed in his ability to take care of his hygiene. Further, he has become more withdrawn and aggressive. The mother, worried about her son, has not been sleeping or eating well, and cries often.

This plausible scenario depicts some of the difficulties experienced by children with ASD and their families during the transition to adulthood. The increase in maladaptive behaviors and the stalled rate of skill improvement is enhanced in the context of a lack of stimulating programming as a result of service gaps. The mother is experiencing increased caregiving burden, as she must provide additional care for her child who is now home full time.

The current estimated prevalence of ASD is 1 in 68, a 30% increase since 2008 [1•]. Whether this reflects true increases in prevalence or changes in the screening and diagnostic process, the demands for ASD-related care are increasing. Four times more common in boys than girls, the prevalence is higher for non-Hispanic white children compared to non-Hispanic black, Asian, and Hispanic children [1•]. ASD is typically diagnosed in childhood and is characterized by the presence of persistent deficits in social communication and social interaction as demonstrated in multiple contexts [2]. This includes deficits in social-emotional reciprocity, nonverbal communication, and in developing and maintaining relationships with others. In addition, individuals with ASD present with restrictive and repetitive patterns of behaviors and interests. These behaviors can be manifested through stereotyped or repetitive motor movements, insistence on routine, rigidity, restricted and highly fixated topics of interest, and hyper- or hyposensitivity to sensory stimuli [2]. ASD encompasses a wide spectrum of differing levels of disability and significant impairments in different aspects of the individual’s daily functioning including in the social, occupational, and academic domains [2].

Raising a child with a disability can be a significant source of family stress [3••, 4•]. Indeed, ASD appears to create the highest amounts of stress for families, as compared to other disabilities (e.g., intellectual disabilities) and typically developing children [5]. This is due in part to the specific challenges of the disorder as well as prolonged dependency on parents [6]. Research from the UK found that parents often report feeling as though they are in a permanent state of crisis and describe facing constant daily challenges [7]. To accommodate their child’s needs in the short and long term, parents often have to change many aspects of their lives [8].

Adding to this burden are the difficulties in obtaining services to receive a diagnosis and then accessing specialized services to intervene with the children. As a result, parents become “case managers” and are responsible for navigating the educational, social service, and pediatric health care systems in order to access and coordinate services for their child [9]. Parents often face multiple barriers when attempting to access services for their child. These include difficulties obtaining referrals for specialists and specialized services, long waitlists, and limited services once the child reaches young adulthood [10,11,12]. Financial stress is a common reality for these families. When parents are unable to access public services, they may choose to pay for essential services privately to help their child. In addition to the cost of the actual therapies, such as speech and occupational therapy, parents must often reduce their work hours to be available to bring the child to therapy and to learn the interventions [9]. As a result, this leads to decreased income for the family thereby increasing financial strain and ultimately parenting stress. The purpose of the present paper is to review the recent literature on parenting stress in ASD and identify potential service access improvement that would reduce stress and supporting parental well-being across the lifespan.

Parenting Stress

Parenting stress is one of the most studied aspects within families of children with ASD. These parents experience decreased physical and mental health, poor social functioning, and lower quality of life, on average, compared with other parents [13]. Parenting stress is the experience of distress that arises from the demands associated with parenting a child [14]. Stress arises from the interactions of an individual, or family, with their immediate environment and an inability to meet the demands of that environment [15]. While stress is considered a normal part of life for all families, parents of children with ASD have been found to report significant distress as compared to families of children with other disabilities and typically developing children [16, 17]. This can be attributed to the specific symptomatology of ASD, along with a lack of appropriate support and specialized services. That being said, caring for these children also goes beyond their ASD-related problems to include difficulties related to sleep, eating, and self-care as well as other comorbid medical and psychiatric conditions [18•].

Service Access and Parenting Stress

While one would think that access to services would help buffer the impact of stress and perhaps lead to a better quality of life, this does not seem to be the case [13]. Unmet service needs (both perceived and real) contribute to caregiver burden [19]. In the UK, parents reported struggling with the excessive bureaucracy related to requesting and receiving services [20]. Difficulty navigating and accessing services, coordinating and receiving care from multiple agencies and professionals, and having no centralized person or place from which to obtain information are all significant contributors of parent distress [18•, 21••]. Further, fragmented services tied with constantly having to repeat their child’s history is also associated with decreased well-being [21••]. Parents have to “fight” for services, creating an adversarial relationship with service providers [18•, 20]. As such, parents feel misunderstood and isolated from the professionals they are working with. Parents perceive certain school professionals as having a limited knowledge of ASD and often feel blamed by them with regard to their child’s behavior [22].

As children age, parents become more concerned about their child meeting important life milestones such as moving out and finding employment [22]. However, residential care is difficult, if not impossible, to access and becomes an important concern for parents who do not want to rely on their other children to take care of their child with ASD [23]. Overall, parents appear to be more frustrated by service level characteristics (e.g., access to care) than by practitioner level characteristics [21••].

Transitional Periods

Transitions are difficult periods for families of children with ASD, because, in general, these periods are associated with uncertainty and change in services. In the following sections, research on two specific transitional periods will be reviewed: (1) following the child’s diagnosis and (2) during the transition from high school to adulthood.

The Diagnostic Process

Parents are often the first to observe ASD symptoms and do so much earlier than when the child receives their diagnosis. On average, parents become concerned about their child’s development between 17 and 19 months of age [24]. Parents’ concerns often emerge as a result of an apparent slowing down of development, lack of progress in development, or loss of a previously acquired skill [25]. A regression is reported by parents in 10–50% of cases and involves deterioration in language (e.g., loss of words or vocalizations), nonverbal communication (e.g., loss of eye contact, pointing), or loss of pretend play skills [26, 27].

The diagnostic process can be a demanding and powerfully emotive experience for families [28]. Parents have to overcome a number of obstacles to obtain the diagnosis and are given abundant amounts of information. Having noticed their child’s difficulties, parents will seek out professional help [29]. This usually signifies the parents’ entry into the social service system. The period during which the child’s symptomatology is explored and the diagnosis is confirmed is a difficult time for parents. Parents experience frustration prior to the confirmation of the diagnosis, and there are can be significant delays in obtaining a definitive answer [10]. One of the first steps in the process is for parents to share concerns with their child’s physician. This process is long and complex, sometimes resulting in a wrong diagnosis [22]. Research has shown, however, that physicians often do not take parent concerns into account, thus delaying the next step in the process [30]. Often, multiple referrals are required before the parents can consult a specialist [10]. The waitlists to meet with an ASD diagnostician are long, and parents have to wait for extended periods of time before beginning the diagnostic process [11]. Further, when children are high functioning, families experience significantly longer delays [31]. Children are typically diagnosed around the age of 36 months for children with autism, and around 7 years of age for children with an Asperger profile [32, 33]. This is especially problematic, as early intervention programs are the most effective in teaching skills and managing behaviors, especially when started at a young age [32, 33]. Thus, these delays increase family stress and hinder the start of intervention programs for the child with ASD. Further, children who are diagnosed later may no longer have the option of early intervention services, as they will have “aged out.”

Taken together, these findings highlight several important issues. As health professionals are often the first point of access, more training is required to help them identify the early symptoms of ASD in young children. Specifically, more appropriately trained psychologists, pediatricians, and other health professionals are required to help speed up diagnostic processes and service access for both pediatric and adult services. Finally, collaboration between parents and professionals is essential, as parents are often the first to notice problems and regressions in development.

Transition to Adulthood

The transition from adolescence to adulthood is another important transition for parents of children with ASD. The mark of this transition is the child’s graduation from high school or equivalent educational services, as well as the exit from the pediatric health care system into adult care. When children turn 18 or finish high school, families lose entitlement to many, and sometimes all, services they were currently receiving [12]. Services become limited for adults with ASD, and as a result, young adults with ASD become increasingly dependent on their families for care and support [19]. Applying to new, more age appropriate services becomes more difficult as parents are faced with long waitlists and very few opportunities for program options that will help increase their child’s autonomy [34]. These services are not always specific to the child’s presenting problems. That is, the services may not be geared towards individuals with ASD, and often do not take into account any other comorbid psychological and physical conditions [19]. Further, research has found that young adults with ASD but no intellectual impairment are three times less likely to have daytime activities after high school than those who have ASD with an intellectual impairment [35]. These individuals may struggle to reach their potential, especially after high school, as the developmental disability service system available to them may not accommodate the unique needs of individuals with ASD without ID [35]. Finding appropriate supports may be hindered further once a child reaches the age of majority, because parents may not be able to act on behalf of their adult child with ASD if he or she does not have an intellectual disability. In sum, the current state of services for individuals with ASD, both with and without intellectual impairments, is woefully lacking.

Maladaptive behaviors present in individuals with intellectual disabilities have been found to worsen at the termination of high school [12, 36]. Given the particularities of ASD, such as strict adherence to routine and an intolerance to change [37], it is unsurprising that we see an increase in the child’s behavioral symptoms during a period fraught with change and uncertainty. Even more alarming is that while students with ASD were found to be experiencing significant improvements while in school, there were no signs of improvement on any skills post high school. This can be attributed to difficulties in finding and obtaining appropriate services or settings for young adults with ASD to use and practice their skills after leaving the educational system [12].

Taken together, parenting stress during the transition from adolescence to adulthood is increased due to lack of appropriate services, obstacles in obtaining services, and the increase in children’s maladaptive behaviors that occur during this period.

Proposed Interventions to Support Parents

Though interventions and policy change will take time to implement, research has identified some interesting avenues to improve support for families of children with ASD. Recommendations from the literature fall into one of three categories: (1) individual and family interventions; (2) community interventions; and (3) service-related interventions.

Individual and Family Interventions

Within the context of this paper, individual interventions are those that promote parental well-being. It is important to note, however, that when children receive appropriate intervention, it benefits not only the child but also the parental well-being [38]. As discussed throughout this paper, parents of children with ASD are faced with many stressors over which they have little control. Changing a child’s problematic behaviors is often a long and difficult process, even with appropriate intervention. Indeed, for parents of children with ASD who have more chronic behavioral issues, only using a problem-focused coping approach may not be sufficient to ensure positive parent adjustment [39]. This may be because parents’ subjective well-being is predicted by their perceptions of the child’s lability and negativity, more than the ASD diagnosis itself [40]. In these cases, parents’ acceptance of the situation may be a more effective coping strategy [4•, 41]. Some scholars have argued that teaching parents to accept the challenges over which they have no control can be as helpful as advocating for services [42]. For example, a decrease in psychological acceptance as a result of behavioral difficulties was a strong predictor of parental mental health problems in one study, and finding benefits in a stressful situation was associated with greater marital satisfaction in both partners in another study [39, 43]. Similarly, in the first year following diagnosis, the predictors of caregiver burden and parenting stress were increased negative appraisal, increased avoidant coping strategies, and decreased problem-focused coping strategies. Better marital adjustment was predicted by changes in decreased negative appraisals, decreased stress, and increased social support [4•].

Mindfulness-based interventions, acceptance and commitment therapy (ACT), and cognitive behavior therapy (CBT) have all been found to enhance parental well-being. Mindfulness interventions teach individuals to be present in the actual moment [44]. The goal is to change the way individuals experience negative situations by teaching them to accept the sensations as they feel them [44]. Mindfulness is particularly applicable with individuals facing problems with no immediate or short-term solution, as it teaches parents to become more aware of their own emotional and physical needs, and to be more mindful in child-parent interactions [45]. This approach provides a space for parents to process how they are feeling and think about a coping strategy, instead of just reacting to the stressor [41]. Mindfulness has been found to lead to significant reductions in psychological distress among parents of children with ASD that were maintained 20 weeks post intervention [41, 45]. Mindfulness is particularly beneficial to parents, as it teaches skills that can be generalized to different stressors. Further, effects were seen even when parents did not use the skills in an intensive way, but rather worked it into their daily lives where it made sense to them [45].

ACT emphasizes accepting difficult situations and provides a clarification of the person’s values and beliefs related to the stressor. Similar to the effects of mindfulness therapies, research has shown improved psychological distress for parents of children with ASD with gains observed up to 3 months post intervention [42]. CBT techniques such as cognitive restructuring and monitoring thoughts and feelings have been used in groups of parents of children with special needs [38]. These techniques have helped enhanced parental well-being, which is unsurprising given that aspects such as anxiety and depressive symptoms are amenable to CBT [38].

Given the multiple responsibilities and time constraints faced by parents of children with ASD, their ability to participate in time intensive therapies may be limited. As such, it may be more beneficial given as workshops to accommodate their hectic schedules [41, 42]. Further, if such interventions are embedded within services for individuals with ASD, it may be more feasible for service systems to offer them and parents might be more likely to attend [42, 45]. Exploring other alternative modalities for treatment such as online workshops and services might increase parent participation [45]. Further, some authors recommend using more therapist-guided exercises that can help parents cope with the stressors of parenting and offering follow-up sessions targeting skills not sufficiently covered in the workshops [42].

Improving the marital relationship and co-parenting abilities of parents is essential to promoting well-being [7, 46••, 47]. Research has recommended earlier involvement of fathers in parenting to build an alliance with mothers and to offer them increased support [7]. Further, encouraging dyadic coping strategies and increased communication between parents in the marital relationship will help maintain this alliance and support [46••, 47]. Parents should be encouraged to seek emotional and instrumental support from each other, as well as from individuals within their support network [43].

Future family planning following the child’s diagnosis is highly dependent on parents adapting to the diagnosis and to their new family situation [48]. Therefore, psychoeducation about the diagnosis, prognosis, and heritability may help parents make the best decisions for their families. In addition, parents and families who do not fare well tend to have closed communication, negative appraisals for stressors and situations, and lack support from each other [46••, 49]. Therefore, family level interventions should emphasize positive appraisals of stressors, have open and honest communication with each other, and consistent parenting strategies [49]. Further, interventions teaching the family to engage in problem solving and coping strategies may lead to improved family resiliency [49].

Taken together, professionals should intervene with parents to explore current coping strategies and appraisal processes, as well as their efficacy [4•]. Further, interventions with the child or family should take into consideration attributions and beliefs of parents regarding their child’s behavior, teaching them to reappraise situations in a more favorable or neutral light [40]. Finally, working on the relationships between parents and other family members is important for coping and family cohesiveness.

Community Interventions

Given the importance of social support networks for parents, interventions that emphasize creating and maintaining formal and informal support systems may beneficial for parents [3••, 4•]. Support groups, such as parent-to-parent programs, have been found to be effective in helping parents build a support network [50]. These programs pair experienced parents with parents who have a newly diagnosed child. The veteran parents provide a unique form of support, as they have experienced the difficulties of the new parent and can help them cope [50]. These social networks should be free of criticism, excessive demands, and negative interactions as these exacerbate maternal stress [51•]. This may be especially important during important transitions during the family’s life (e.g., following diagnosis, transition to adulthood). For example, the program “Transitioning Together” is a multi-family 8-week intervention that provides support to families during their child’s transition into adulthood [52]. Specifically, it consists of group interventions for parents and their child with ASD. The group for the parents provides psychoeduation on topics related to ASD and teaches problem solving skills, whereas the child group focuses on various social skills. This program was effective in reducing parenting stress, promoting coping strategies, and creating a positive support system [52]. This provides evidence for the need for more family-focused interventions, especially during periods of change.

Community-based interventions that include psychoeducation on ASD and its related symptoms to help end stigmatization might be helpful in reducing fear of judgment for parents. Further, creating and maintaining school-based interventions may help reduce stress in parents and families that are more disadvantaged [53•]. Rethinking existing disciplinary methods in schools may also support parents. For example, some current intervention practices in schools involve expelling children in the presence challenging behaviors [54]. While it is necessary to teach children that this behavior is unacceptable, keeping the children at home creates additional stress on parents and eliminates a much needed form of respite [54].

Service-Related Interventions

Recommendations for service-related interventions include proposed avenues for policy change. The evidence presented in this paper points to the need for family centered services, as the effects of parenting stress and behavior problems will have an impact on the family unit. For example, if a mother is stressed and is unable to cope, this can have concurrent impacts on other systems within the family unit (e.g., relationship with spouse, relationships with other children). As such, services for children with ASD should include services to the child while simultaneously offering services to other family members [55]. Though not within the scope of this paper, the impact of having a sibling with ASD should also be considered and sibling interventions created to help buffer those effects. Given that parental well-being is more influenced by system level variables, such as access to care as opposed to practitioner level characteristics (e.g., perceived responsiveness), it is imperative that system-related changes be made to help support families [21••].

Services for families should work towards offering increased and flexible respite (e.g., respite when the family requires it); teaching parents how to manage difficult behaviors and oppositional behavior; offering services throughout the lifespan; and appropriate daytime activities for adults [18•, 19, 47, 56•]. Services should strive to have a care coordinator who is responsible for coordinating care and communicating with the various professionals working with the family [57]. Professionals should have open communication and collaboration with families, as well as knowledge of their values, needs, and cultural beliefs [7, 18•, 22]. Proposed interventions should be in line with family reality and take into account any comorbid conditions [18•, 46••]. For example, professionals need to work with parents to ensure that parents have the resources and time to implement recommended interventions. There is evidence that comorbid conditions contribute significantly to caregiver distress in ASD [18•, 19]. Thus, the creation of ASD-specific services that are specialized and can target multiple conditions may help reduce burden for families [19].

Finally, increased financial support for families to use for respite, private services, or tangible support (e.g., someone to come clean the house) should be offered [47]. Such support may be especially beneficial to disadvantaged families who have difficulty accessing services. Further, additional financial support such as specialized services that are covered by the government health plans, more government care plans for families of children with disabilities, better pension packages, and better policy coverage on insurance plans may also alleviate stress from families. Flexible employment opportunities that accommodate the changing needs of families may help ease stress and financial strain [57].

Conclusion

There is a wealth of research providing evidence for the significant impact of parenting stress on the well-being of parents of children with ASD. And, while there exists numerous interventions and proposed policy changes to support families, more research is needed on the best practices that will help counter the significant impacts of stress on parents. In terms of methodology, most of the intervention research reviewed employed quasi-experimental designs that lacked comparison groups; the samples were mostly convenience samples with small sample sizes that usually only included mothers; and although some of the research presented here reflected the realities of families outside of North America (e.g., Luxembourg, UK, Jordan), most of the research was conducted in the North American context. Building from these limitations, recommended avenues for future research include using randomized controlled trials to examine the effectiveness of proposed interventions on well-being; assessing fathers’ experiences and well-being; and conducting cross-cultural comparisons to determine if stressors and needs are similar across cultures.

Finally, future research on interventions would benefit from taking a systems view. For example, Ecological Systems Theory stipulates that individuals are influenced by the relational and contextual systems in which they are embedded [58]. That is, individual well-being is influenced by family relationships, which are in turn embedded within and influenced by different contexts (e.g., schools and social services). From this view, the well-being of parents of children with ASD is viewed as influenced not only by the caregiving demands associated with their child’s symptoms and behaviors but also by the services and interventions available to both their children and to themselves. Future intervention research should evaluate both the impact of parental interventions on child outcomes, such as behavior problems, and vice versa. Taking a systems view will ensure that research on the best ways to successfully implement interventions into existing systems takes into account both parental and child well-being to support successful family transitions [41, 55].