Autism and Maternal Stress

"Parental stress” is experienced by parents of all backgrounds. There’s no way around stress when it comes to raising kids. But the experiences of parents of children with autism can often exceed the challenges other parents face with typically-developing children.

This does not mean that all parents of children with autism experience the same challenges or hurdles. Autism exists on a spectrum, and no two children are completely alike. Yet, for many, the ongoing and significant challenges associated with raising a child with autism can contribute to elevated stress levels and feelings of isolation, guilt, and hopelessness. Parenting a child with autism may even be associated with higher stress levels than parenting children with intellectual disabilities, Down syndrome, cystic fibrosis, or cerebral palsy (Hayes & Watson, 2013).

Stewart et al. (2017) studied the relationship between maternal stress, trauma, and parenting children with autism through a series of focus groups. Researchers spoke with a group of 12 mothers of children with autism and gathered information about their parenting experiences through a trauma-based lens. They concluded that some parents could come to experience trauma-related symptoms as noted in the DSM-5 in response to their child's behaviors.

The Presence of Traumatic Stressors

To meet the criteria for a post-traumatic stress disorder, one must be exposed to actual or threatened death, serious injury, or sexual violence by either directly experiencing the traumatic event, witnessing the event as it occurs to others, learning about the traumatic event, or experiencing repeated or extreme exposure to aversive details of the traumatic events (APA, 2013). In focus groups, five mothers spoke about physically restraining their children to protect them from injuring themselves or others. Mothers identified their child’s behavior as a potential threat to others and reported numerous instances when they had to intervene, risking their own safety. Mothers also noted concerns about their child’s safety related to their elopement and being injured by others.

Intrusive Symptoms Associated With a Traumatic Event

The mothers in these focus groups also presented with intrusive symptoms associated with episodes of self-injurious behaviors and restraints. Nine mothers also described how receiving their child’s autism diagnosis served as a distressing memory later triggered by certain events. These included providing their child’s diagnosis report for funding, talking about the diagnosis with others, and observing their child’s negative reactions towards the autism diagnosis. One mother reported her child saying, “I wish I could cut the Asperger’s out of my brain…why do I do such bad things? I must be so hard to love.” When re-experiencing these types of memories, mothers reported feeling strong negative emotions, physiological reactivity, and the need to remove themselves from others.

Avoidance of Stimuli Associated With a Traumatic Event

Some mothers also expressed symptoms of avoidance and detachment from their emotions to “survive” when their child re-engaged in self-injurious behaviors or when restraints were needed. Mothers reported going into “survival mode” and detaching themselves from their emotions. They expressed a need to escape from these situations by driving or isolating themselves in their bedrooms. While researchers noted that these behaviors may represent helpful emotional regulation mechanisms, they may also reflect attempts to avoid external reminders of the events.

Negative Alterations in Cognitions and Mood

The DSM-5 notes the presence of negative alterations in cognition and mood in trauma-related disorders. This can include symptoms of dissociative amnesia, exaggerated negative beliefs, distorted cognitions or beliefs about the event, ongoing negative emotional states, diminished interest or participation in enjoyable activities, feelings of detachment from others, and an inability to experience positive emotions (APA, 2013).

Throughout the focus groups, researchers noted that mothers presented negative shifts in their presentations when discussing their parenting challenges. The words “depressing” and “anxiety” were commonly used, and mothers described feelings of hopelessness, grief, sadness, and self-blame as they related to their children’s behaviors. Six out of the 12 mothers shared that they had been prescribed antidepressants shortly after their child was diagnosed to help them cope.

Marked Alterations in Arousal and Reactivity

Following traumatic experiences, individuals can feel very alert, on-edge, and show exaggerated startle responses. They can also experience sleep disturbances, problems with concentration, and extreme irritability (APA, 2013). Mothers in this focus group reported similar symptomology. They spoke of the need to always be on the “alert” if they needed to intervene, remaining in a “hypervigilant” state. One mother noted, “It’s like fight or flight 100% of the time…” Sleep disruptions and irritability were also noted among the mothers.

The heightened stress may also be observed among mothers' biological responses. According to Seltzer et al. (2010), some mothers of children with autism experienced similar physiological stress profiles as combat soldiers, Holocaust survivors, and individuals diagnosed with PTSD. Researchers examined the associations between child behavior problems and maternal salivary cortisol. They found that mothers of children with autism presented with elevated stress levels in the body compared to mothers with similar-aged children without a disability.

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Findings from the focus groups demonstrate that mothers of children with ASD can encounter traumatic events as defined in the DSM-5 and can present with clinically significant trauma-related symptoms associated with their child’s behaviors. While not every mother or father will experience the same challenges or stressors, it is important to acknowledge the ones who do. If, indeed, the unique challenges faced by these parents are tied to trauma-related symptomatology, the specific interventions and ways of supporting these families would need to be tailored accordingly.

Mothers’ Resilience

Amidst the ongoing challenges and forms of adversity noted by the mothers in these focus groups, researchers highlighted one area that continually stood out: the mothers’ resilience. The mothers who shared their experiences continued to put their child’s needs above their own and entered into “survival mode” when required to care for their family. Despite their exposure to recurrent events that could be deemed “traumatic” and their lack of social and emotional support, these mothers continued to “move heaven and earth for [their] child” and elevated their child’s well-being above their own.