Trajectory of Parent Caregivers of Autistic Children

WHO ARE THEY?

The term parent caregivers of autistic children refers to parents whose child has an autism spectrum disorder (ASD), whether diagnosed or not and regardless of the level of severity.

Autism is a neurodevelopmental disorder that manifests in different ways and can affect sensory processing, social communication, the ability to perform certain tasks, and the management of emotions and behaviours (3). As a result, autistic children may require additional support from their parents. In these cases, parents take on the dual roles of parent and caregiver.

The caring responsibilities assumed by parent caregivers of autistic children often focus on helping their child develop their autonomy, motor skills, language, communication and social skills, while also addressing their specific needs.

FAMILY SITUATION

Various aspects of the parent caregiver’s family situation may influence their caregiving trajectory.

For instance:

• In single-parent households, parenting and caregiving responsibilities fall upon one person only and can therefore be experienced as a greater burden (13).
• When other siblings are present, they may sometimes be given more responsibilities to lessen the load for their parents (e.g., helping to prepare meals, taking care of younger siblings) (14).
• When the autistic child has an older sibling who also has an autism diagnosis, the parents may find certain steps more manageable, having been through the same process with their first child (13).

AGE

Given the trend to have children later in life and the fact that some children with autism will need lifelong support, age becomes a key factor in the trajectory of parent caregivers. As parents get older, their physical and cognitive abilities may decline, reducing their ability to support their child. This can create uncertainty about the child’s future and raise concerns about the continuity of care. Parent caregivers may therefore need to plan alternative solutions for meeting their child’s future needs, such as seeking supported housing or implementing legal means to ensure their child’s long-term security and well-being (13).

GENDER

The primary caregivers for autistic children are most often their mothers (6, 14, 16). This may be due to societal expectations related to the provision of care, which are higher for women due to their gender and their role as mothers. Additionally, since women typically hold lower-paying, less prestigious jobs, they are more likely to reduce their hours or stop working altogether to care for their child (17).

CHILD’S SYMPTOMS AND BEHAVIOURS

Autism can manifest through a wide range of symptoms and behaviours that can be difficult to manage. The challenges in caring for a child with autism can persistently and significantly affect family dynamics, physical and mental health, sleep and the social lives of the child’s parents (4, 5, 6, 7, 8, 9). Indeed, the parents of autistic children are believed to be more likely to suffer from anxiety and depression than other parents. The severity of the child’s impairment has a direct impact on the levels of stress experienced by their parents, regardless of the child’s age (7, 10). To fully grasp the situation of parent caregivers, it is essential to understand the symptoms and behaviours of autism.

STIGMA

Autistic children and their parents may experience situations of social exclusion and marginalization due to features of the disorder that can lead to atypical, challenging or disruptive behaviours. For parent caregivers, stigma can take the form of having their parenting abilities held up to question by others, which can induce feelings of guilt (13).

Lack of knowledge about autism on the part of family, friends and the broader community can cause the parents to be judged or their child to be seen solely through the lens of their diagnosis (15). Stigma can be harmful to the autistic child, their parent caregivers and the family as a whole, being a significant source of stress and frustration and leaving parents with a vivid sense of isolation (16).

PARENTAL ADVOCACY

To ensure their child’s acceptance and integration into society, parent caregivers of autistic children must often advocate for their child (e.g., defend their right to access education or participate in activities). This not only provides an opportunity to raise awareness about their situation, but it also allows them to (re)gain control over their life and shift their focus to solutions (18). Still, their efforts to defend their child’s rights can lead to parents being labeled, excluded or perceived as disruptive by other parents (18), an ongoing battle that can be very isolating.

ORGANIZATION AND ACCESS TO SERVICES

Being able to access supports and services has a decisive influence on the trajectories of parent caregivers of autistic children. The access to specialized services is organized and designed based on the prior receipt of an autism diagnosis for the child. However, limited access to family doctors and specialists can make obtaining a diagnosis difficult (19). In Canada, families can wait up to three years to begin the assessment that will lead to eventual diagnosis (20). As a result, parent caregivers often have to turn to private — and more costly — resources to navigate what is already a challenging process (19). (For more information on this topic, see the section entitled Autism diagnosis)

In Quebec, even when a diagnosis is obtained, the persistent lack of public-sector resources mean that children cannot be guaranteed to receive the services they need (19).

Often, the children who are prioritized are those with the most severe symptoms. These children will go on to obtain services from the health and social services system, forcing the parents of children with less severe symptoms to either continue waiting or else turn to private resources. Having to pay for services can have significant financial repercussions for families in which one parent — most often the mother — has to stop working or reduce their working hours, and thus their income, in order to care for their child (17).

A similar situation occurs in the educational system, where the dearth of resources hinders the ability to meet the needs of all children or provide optimal learning conditions. As a result, parents must play an active role in ensuring their child receives the support they need from a system ill-equipped to address the specific challenges of autism (13).

PLACE OF RESIDENCE

Where a family lives will influence their caregiving trajectory. In urban areas where healthcare, education and social services are more concentrated, families typically have easier access to a wide range of specialized resources (13). However, in rural or remote areas, access to these services may be limited and the distances required to travel to obtain them, long and costly, entailing additional burdens for the family (20). Compounding the situation is the fact that many regions suffer from staff shortages, which can increase service wait times.

These geographic disparities create unequal access to care and services, thus heightening the health and wellness gaps between parent caregivers of autistic children who live in different areas.

SOCIOECONOMIC SITUATION

Raising a child with autism can have a financial impact on parent caregivers inasmuch as it can entail more expenses than raising a child without a neurodevelopmental disorder (10). Many parent caregivers of autistic children find themselves in situations of financial precarity, not the least because in many cases, one parent — most often the mother — must stay home to care for the child, resulting in a loss of family income.

Furthermore, having to turn to services, treatments and/or professional supports that are not covered by insurance (e.g., educational therapies, speech therapy, occupational therapy, specialized education and stimulation services, tutoring, family coaching) can further drain the family’s financial resources (10, 22).

ETHNOCULTURAL DIVERSITY

Ethnic and cultural differences can affect the role of parent caregivers of autistic children. In some cultures where neurodevelopmental disorders are less understood (and therefore rarely discussed), parent caregivers and their social networks are apt to be less informed about ASD. Having a child with autism may also be perceived as a source of shame (7).

ENTRY INTO CAREGIVING

Autism is a neurodevelopmental disorder that is present from birth. Early signs may appear during early childhood, typically around the age of two (25). Parent caregivers of autistic children often take on their caregiving role as a matter of course with the emergence of the first signs and behaviours. While these may be observed early on by the parents, their family, their social circle or healthcare professionals, they can also only become apparent later, especially when symptoms are less common or severe. The initial concerns of parent caregivers often serve as a stepping stone toward their subsequent search for information and support (19).

THE END OF CAREGIVING

RECONFIGURING THE ROLE OF PARENT CAREGIVER

When a child with autism becomes an adult, the role of parent caregivers may be reconfigured, shaped by both their own realities and those of their child. More concretely, parents may shift from a role of intensive, direct support to one that is less demanding and more distant. There can be multiple phases of reconfiguration in the trajectory, depending on the life changes affecting both parents and child.

One factor with a significant influence in this sense is whether or not the child continues to live at home. Moving out of the family home, while it is unlikely to mark the end of caregiving, nonetheless signals the start of a new phase in the caregiving trajectory, one that involves reassessing tasks and adjusting to the child’s changing needs.

The process of role reconfiguration may prompt parents to redefine their identity, presenting the opportunity to reassess priorities, redraw boundaries and modify personal and professional aspirations. It can also alter their position within the family and society as well as their self-perception.

THE START OF SCHOOLING

Going to school is an important turning point for both the autistic child and their parent caregivers. Depending on the child’s needs, their parents’ wishes, the school’s available resources and whether or not a diagnosis has been received, autistic children may be placed in a regular classroom or in a special-education class or school (13, 22).

When the diagnosis is made before the child starts school:

• Special provisions are more likely to be made for the child once they enter school — for example, being allowed to attend kindergarten on a part-time basis or have a teacher’s aide (13).
• The child is more likely to have benefited from specialized services like an intensive behavioural intervention program before starting school (13, 32).

When the diagnosis is only made after the child has started school:

• The child may need to change schools if their current establishment is unable to provide the appropriate services (13).

RECOGNITION OF PARENT CAREGIVERS

Recognition of the support needs and expertise of parent caregivers by professionals can greatly influence their caregiving trajectory.

RECOGNIZING SUPPORT NEEDS

Parents generally have little difficulty recognizing their child’s needs. However, when a neurodevelopmental disorder is at play, they can struggle to acknowledge their own needs as caregivers (13). Parenting a child with autism can entail an immense commitment in terms of ensuring the child’s education, providing stimulation, seeking help, monitoring their condition and providing day-to-day care and support. This substantial investment of time, energy and resources can have significant repercussions for parent caregivers, particularly in terms of their well-being, economic security, employment situation, relationship with each other and social life (34).

RECOGNIZING PARENTAL EXPERTISE

Throughout their trajectory, parent caregivers develop a deep understanding of their child’s unique characteristics — for example, their particular strengths, challenges, preferences, interests and ways of interacting (34). However, while the importance of including families in interventions for children with autism is widely recognized, their expertise can be overlooked by staff across a range of settings.

Acknowledging the expertise of parent caregivers by educators, health professionals and social service providers allows for:

• interventions to be better adapted to the child’s specific characteristics;
• common goals to be established in keeping with the parents’ concerns;
• learning from the parents’ daily experiences to improve interventions with the child (34).

SUPPORT AND RESOURCES

Support and resources for parent caregivers of autistic children can play a major role in the caregiving trajectory. Such support may come from different sources and take many forms.

SERVICES FOR THE CHILD

Services and resources that provide effective support for the child remain among the best ways of supporting parent caregivers as well, equipping them to better understand their child’s reactions and intervene appropriately (17).

SUPPORT FROM FAMILY AND FRIENDS

Parent caregivers cite support from family and friends as among the strategies they use to cope with the challenges of raising an autistic child (15, 27).

SUPPORT GROUPS AND PEER SUPPORT

Support groups are highly appreciated by parent caregivers, who feel validated and less alone when they can talk to others who experience and understand their situation (6, 21). Furthermore, connecting with other parents in similar situations, whether through support groups, social media or acquaintances, can help parent caregivers gain a better understanding of autism, the available services and how to access them.

RESPITE SERVICES

Respite services aim to provide a safe space and supervision for the child while allowing parents to get some time to themselves. These services free up parents to complete tasks, engage in activities or simply get some rest. Parent caregivers tend to wait until their child is a teenager before requesting this type of support (13), since they feel more comfortable leaving an older child in the hands of others.

CHILD’S TRANSITION TOWARD ADULTHOOD

The transition toward adulthood is a period of great change for parent caregivers and their autistic children.

WORRIES ABOUT THE FUTURE

Children with autism may have difficulty developing the skills needed to live independently. Some autistic people may need lifelong support (10).

Parental concerns may intensify as the child approaches adulthood. For example, parents may feel anxious about their ability to continue supporting their child as they themselves age, or experience guilt at the thought of no longer being able to care for their child.

CHANGES AND CHOICES

The transition to adulthood by a child with autism brings with it many changes that require parent caregivers to make important and often complex decisions. These decisions must take into account the child’s wishes and capacities, the family’s desires, needs and financial means, and the available support resources.

This period is often linked to:

• Changes in services
  • Parents must often learn to navigate new support structures (e.g., adult services) once their child is no longer eligible for the services they had received during childhood and adolescence.
  • The end of studies after the age of 21 often means a loss of crucial services.
• Questions about what comes after high school
  • Parent caregivers and their child must often decide whether it is better for the child to continue their studies — for example, by pursuing higher education — or enter the workforce. These decisions will depend not only on the child’s interests and abilities, but also on the availability of specialized support in post-secondary institutions, such as transition programs (e.g., school-to-work programs), employment support services or special arrangements.
• Questions about where the child will live
  • As the child approaches adulthood, both they and their parent caregivers must consider different housing options. Some autistic children will remain in the family home, while others will move into independent housing or a supported living environment (e.g., intermediate or family-type resource, assisted living, private housing with services, long-term care facility). However, external housing resources are generally limited due to lack of space, long waiting lists or a mismatch between the needs of autistic individuals and the resources on hand (36, 37, 38).
• Questions about legal protection
  • When their child reaches the age of majority, the change in the parent’s status from legal guardian raises the issue of guardianship. Parent caregivers sometimes must decide whether their child requires legal protection to manage their personal affairs and property.
• Changes in self-perception by parent caregivers
  • When their child reaches the age of majority, even though their status as parent changes in the eyes of the law, parents (who, up until then, may have seen their caring responsibilities as merely part of parenting) are more likely to identify as “caregivers” since, under the prevailing social norms, their role as “parent" is expected to diminish with the onset of adulthood (13).

THE AUTISM DIAGNOSIS

Obtaining a diagnosis of autism is a multi-step process that can be very demanding for parent caregivers (26).

OBTAINING THE DIAGNOSIS

Diagnosis is crucial, since it is often an essential prerequisite for many service settings before specific support can be provided to the autistic child and their parent caregivers (20).

CHILD’S AGE AT TIME OF DIAGNOSIS

The age of their child at time of diagnosis will greatly influence the implementation of supports and services and, consequently, the parent caregivers’ trajectory (13).

Parent caregivers whose child is diagnosed at a young age will have greater access to intensive and early support aimed at fostering their child’s autonomy, motor skills, communication skills, attention span and social and play skills. Treatments like early intensive behavioural intervention can benefit parent caregivers by improving their sense of self-efficacy in addition to providing their child with support. However, the level of involvement required from parents in these cases can compound their burden, given the significant amounts of time, money and energy that such treatments require (17, 28, 29, 30).

Conversely, when children are diagnosed later in childhood or during adolescence, support will likewise only arrive later. Here, parent caregivers must palliate the lack of services and fight for access to support and adaptations (17).

ACCEPTING THE DIAGNOSIS

While some parents are relieved to receive a diagnosis that can open the door to support, others can struggle with accepting the implications of autism, experiencing feelings of ambivalence, shock or grief (26, 27).