Parents of Children With Autism: The Arduous Road

The challenges that parents of children with Autism face are overlooked in the mental health community. Research into identification and treatment of Autism Spectrum Disorders is one of the most well funded endeavors within the psychology community. There has been a substantial increase in children diagnosed with Autism Spectrum Disorders. Recent estimates suggest that between 1 in 59 children will be identified as having an Autism Spectrum Disorder. Autism is recognized as one of the most complex, debilitating and lifelong neurodevelopmental disabilities

Autism Spectrum Disorders have garnered widespread attention over the past few decades. Fortunately, this increased attention has translated into a better understanding into evidence-based treatment for children with ASDs. The research is also clear that parents with children on the Spectrum suffer tremendously emotionally. Research has demonstrated that parents of children with disabilities experience higher levels of psychological maladjustment

Their need for psychological support outside clinical trials; however, is often overlooked.

Research on parents of children with ASDs emotional struggles

Early research suggested that parents’ emotional response to the diagnosis of a disability for their child is consistent with experiencing loss followed by stages of grief. Subsequent research shifted from the theory of stages of grief occurring in isolation to the idea that acceptance is experienced concurrently with the stages of grief. Such research suggested that linear stage models of grief do not occur in isolation but a parent’s emotional response to the diagnosis of a disability is multidimensional.

Although multidimensional models have provided an important conceptualization of parental emotional adjustments, it is critical to understand the child’s specific disorder to fully comprehendparental emotional adjustment. For example, the emotional response of raising a child with a learning disability is very different from the emotional response of raising a child with a developmental disability. In fact, mothers of children with developmental disabilities are reported to show significantly higher stress levels than mothers with learning disabilities. Mothers of children with Autism have reported higher levels of stress than mother of children with learning disabilities and mothers of children with Down Syndrome.

Challenges that Parents face

Parents of children with autism spectrum disorders experience many distressing challenges which require a tremendous amount of endurance and social support.  These parents may experience emotional distress, marital conflicts, guilt, anxiety, and frustration and feel overwhelmed by environmental stressors. The task of raising a child with autism is among the most stressful challenges a family can face.  Parents often experience sleepless nights for several days in a row which ultimately may lead to high levels of stress, feeling overwhelmed, anxiety and depression. Parents also feel lonely, isolated and without support.

Caregivers experience great difficulty coping with stressors due to their emotional state. Parents of children with autism who experience depression experience diminished parenting skills which renders them with little capacity for being a caregiver. In addition, parents are at times so overwhelmed that they fail to attend to their own personal needs. Higher rates of anger, depression, and feelings of guilt affect parents of children with Autism to a greater or lesser degree.

Parents associate their feelings of raising a child with autism as similar to bereavement and great sadness. Some parents reported feeling so distressed that it hampered them physically. Parents feel an overwhelming sense of anger which seemed to originate from a sense of loss and grief. Along with feelings of bereavement, parents may also experience significant guilt. Parents may wonder if they are responsible for their child’s condition. Self-reproach and remorse lead to an increase in guilt. Some parents experience such overwhelming feelings of guilt and depression that they reach a point of having a “death wish”.  In fact, parents may reject and despise their children at times. During difficult and challenging times, these feelings are common among children with disabling conditions.

Feelings of rejection and worthlessness are also experienced commonly, which stem from a lack of a relationship with their child. Despair and hopelessness are also experienced by parents as they may feel unable to escape the situation or deal with daily stressors. Guilt, bereavement, anger, and hopelessness are common feelings in individuals with depression. The combination of these emotional difficulties can inevitably result in episodes of depression in parents of children with Autism Spectrum Disorders.

Differences between mothers and fathers

While some studies have shown that mothers experience higher levels of depression than fathers, empirical evidence is not strong. Mothers seem to score higher on measures of depression but not substantially higher than fathers. Mothers seem to experience more stress as they are generally the caretaker during the day while fathers are normally at work. Fathers also seem to experience significant stress levels and higher levels of depression often due to financial pressures of providing economically to pay for the expensive services for their child. The depression experienced by mothers seems stem from the difficulties associated with the relationship with their child as well as the enormous stress associated with the daily caretaking responsibilities.

Given the strong research support that parents of ASD children experience high depression rates, my own clinical experience has supported that parents struggle to take care of themselves emotionally. The arduous challenge of raising a child with ASD placed enormous financial and emotional duress for families. Psychologist must be mindful when working with children of ASDs to link parents with therapeutic support for their own mental wellness. These services at a minimum should include referrals to parent support groups, psychologists for individual psychotherapy and couples’ counseling when needed.

Moving Forward

With such an arduous road, parents need to take concrete steps to ensure their emotional wellness. It is well established in the literature that parents of children with ASDs suffer significantly higher levels of clinical depression. My doctoral dissertation examined the relationship between the depression in these parents and the variables that serve to buffer them from such despondence. The evidence was clear that developing a clear meaning and purpose in life was the strongest predictor in protecting themselves from the onset of depressive symptoms. Viktor Frank, the founder of Logotherapy demonstrated that for those with a who developed a clear meaning and purpose in live could withstand and of life’s challenges and maintain emotional wellness. For Frankl, meaninglessness the major existential neurosis of the modern era. Maslow considered the self-actualized persona as one who finds purpose in life. Actualizing to meaning and purpose in life involves the process of searching or engaging in events or relationships that promote self-worth, hope and reasons for living.

In addition to developing meaning and purpose in life, parents possess Inner Resources are more likely to maintain emotional wellness. Inner Resources can be thought of as strength and resiliency. It is the system of knowing and relying on inner strengths, being a peace with yourself, and going inside of guidance. In my clinical experience, strength and resiliency is a by-product of competency. Inner resources can be thought of as a value system that forms the basis of our behavior.

The old saying that it takes a village to raise a child holds true for parents of children with ASDs. In order to navigate this difficult road, parents in the support of their community. Research has shown that parents who have a specific plan for interacting with others and gaining social and emotional support have much better chances of maintaining emotional wellness.  Much of the research has centered around religious groups for gaining support in the community. Parents who are involves in religious activities and support systems have better psychological adjustment, less depression and less anxiety. From my clinical practice, I know that belonging to a social support group of having social integration is an essential component for maintaining emotional equilibrium. There has been a substantial increase in emotional support that are offered to such parents through schools, universities, hospitals, and community clinics.

Ultimately, parents need to transcend these unique challenges through developing meaning and purpose, inner strength, and by seeking support from the community. In my years working with such parents, I developed such a strong admiration for their strength, determination and resiliency. The most emotionally balanced parents possessed a strong meaning and purpose for, inner strength, and had strong connections to a specific group in the community. All of these factors helped them transcended their suffering and maintain emotional wellness through extraordinary challenges.

Respectfully submitted,

Dr. Joseph Graybill

 

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