It is noteworthy to have a closer look on how the arising issue of neurodevelopmental disorders affect families especially the parents and understand why some families are able to cope and some are not. It cannot be denied that rearing children with disability not only pertaining to physical but more so of psychological in nature is a level-up challenge to parents.
From assisting them on their daily survival needs to understanding how they respond is a process that every family member should take into account.
What to know about it? First off, it is crucial to know the effects of neurodevelopmental disorders as such – intellectual disability. Studies reveal that individuals having Neurodevelopmental Disorders have impairment on their language and speech, motor skills, behavior, memory, learning, or other neurological functions (America’s Children and the Environment, 2015). Effects of Neurodevelopmental Disorders vary according to specific disorders. In the study of Flusber, H. 2015, children with Autism characterizes of deficits in communication, social functioning, and behavior that emerge during the toddler or preschool years. In another study of Kiser, D. et. al. 2015, he described Intellectual Disability as a disorder that has impairment in intellectual functioning, social deficits, and behavioral maladaptation. Also, in his study he described individuals with Attention Deficit and Hyperactivity Disorder (ADHD) has inappropriate inattention, hyperactivity, increased impulsivity and motivational/emotional dysregulation.
What characterizes Intellectual Disability? According to DSM 5, intellectual disability is a disorder with onset during the developmental stages that includes intellectual and adaptive functioning deficits in conceptual, social, and practical domains. There are three (3) criteria that must be met:
Intellectual disability is generally non progressive. After early childhood, the disorder is generally life-long. Although the severity of the disorder may change overtime. Early and ongoing interventions can prevent the worsening of adaptive functioning throughout childhood and adulthood. Intellectual disability has approximately 1% of prevalence in the general population and prevalence rates vary by age. Severe intellectual disability has a prevalence rate of 6 per 1,000. (DSM 5)
What leads to parental stress? Given these impairments of having intellectual disability, studies also suggests that it has significant effect on the child’s environment especially the parents. In the recent study conducted by Peer, J. & Hillman, S. (2014), they found out that parents of children suffering from intellectual or developmental disabilities experience more stress than parents with normally developing children. This was supported by existing studies which suggest that parenting stress can (1) disrupt the relationship of the child with the parent and can negatively affect parenting practices in families (Anastropoulus et. al. 1992; Floyd, F. 1997) and (2) affects parents’ psychological functioning, including depression (Mash et. al. 1990) and anxiety (McDonald, E. et. al. 2009.) Also, it has found out that family who has a child with an ID, experiences many challenges such as repeated physical and emotional crises, interactive family issues, ruined schedules, and additional expenses, which can create financial burden and emotional distress for a family (Gohel, Mukherjee, & Choudhary, 2011; Karmanshahi et al., 2008.)
Interestingly, studies also show that these negative impact of having children with ID is not merely attributed to the children’s condition itself but rather to some other factors that come with it. In the study of Seltzer et.al. (2001), parents of children with disabilities experience stressors related to high costs of extensive medical care and future caregiving demands. Parents may have less time to address their own health care needs due to these other caregiving demands (Kosberg & Cairl, 1986). Other factors contributing negatively to parents’ mental health are disappointment that their child will not reach the career ideals they had envisioned or feelings of embarrassment, shame, and isolation (Azeem, et. Al. 2013).
Studies also show that negative emotional impact vary between the parents. According to Azeem et. Al. (2013), there was a higher rate of anxiety and depression among mothers of children with intellectual disability compared to the fathers. This is because mothers are more under pressure to balance child care needs and household chores (Peshawaria et. Al., 1998) and mothers who are housewives can feel restricted in pursuing their social and leisure activities. Fathers have lower rates of anxiety and depression but higher rates than males in the general population (Mumford, Saeed, Ahmad, Latif, & Mubbashar, 1997). Fathers are solely the bread winners of families, and because of social stigma towards children having intellectual disability, parents, especially fathers, can feel shame and embarrassment in taking their child to social and family gatherings which can lead to social isolation for the whole family contributing to further stress ( Azeem, et. Al., 2013).
How do parents cope with it? However, studies also show that despite these negative impact to parent in various aspects, some families even at risk, are able to cope and adapt to this stress. (Konstantareas 1991) Studies also show that families differ in coping with having children with Neurodevelopmental Disorders. In the study of Taanila, A., (2001) results show that the most frequently used coping strategies reported by the parents were: information and acceptance, good family co-operation and social support. Study shows that it is possible for individuals to identify goals, and experience efficacy, mastery, and control even in situations that appear uncontrollable and even worsening. Also, when a negative event occurs, the individual creates a positive event or interprets an otherwise ordinary event in order to offset the unpleasant affective consequences of the negative event (Gupta, A. 2004). This claim was supported by the study of Hassall, R. (2005), wherein he emphasized the potential importance of parental cognitions in experiencing parental stress. In another study conducted by Pakenham, K. et. al. (2004), they stated that finding meaning to a positive relation to adaptive coping process. According to Hastings, R. et. al. (2002), mothers’ perceive their child as a source of happiness/fulfilment and strength. Mothers’ perceptions of the child as a source of personal growth were also positively associated with reframing coping strategies. Furthermore, he also found out that family closeness were positively associated with reframing coping strategies. Theoretically, these study supports the Cognitive Adaptation Theory of Taylor (1983) wherein parents cope with parental stress caused by having children with intellectual disabilities by creating positive perception towards their situation and by construing positive outcome and benefits from experience.
In conclusion, parents of children with intellectual disability show significant distress and experiences psychological factors such as depression and anxiety. The literatures suggest that having children with intellectual disability can have an effect on the relationship among the members of the family. However, other literatures suggest that there is also a positive attribution towards having children with intellectual disability depending on how the parents perceived their situation.