Parents of children with a disability are subjected to added pressures, anxiety and stress.
Being a parent is an amazing life changing experience. Many people have expectations of how they will parent their child and what they would like their child to achieve before they are even born. However, the reality of parenting can be very different. Some may experience post-natal depression, and others may put pressure on themselves to be the perfect parent and struggle as they face daily challenges with their children.
The added pressure of going back to work to maintain a healthy work/life balance also means that parents are expected to juggle more today than previous generations.
So, what happens when a parent has the added responsibility of looking after a child with additional needs?
For many parents, juggling therapy, school, work and family life can all become too much. Autism spectrum disorder (ASD), for example, is a neurodevelopmental disorder characterised by difficulty in social interaction and communication, and by restricted and repetitive patterns of thought and behaviour (American Psychiatric Association [APA], 2013):
Parenting a son or daughter with ASD poses several unique challenges (e.g., Seltzer, Krauss, Orsmond, & Vestal, 2001), which may take a toll on marriages. The extent of this toll in terms of divorce has been the topic of wide speculation in the media, with divorce rates of 80% and higher mentioned (Doherty, 2008; Solomon & Thierry, 2006).” (1)
As well as marital strain, having a child with autism can affect the psychological wellbeing of parents. This extract was written by Connie Anderson, Ph.D, Kennedy Krieger Institute 2007 (2):
There are several reasons why the stress of those parenting children with an autism spectrum disorder (ASD) is so high. All parents of children with disabilities must cope with grief, worries about the future, and the struggle to find and obtain appropriate services. Parents of children with ASD face some additional stressors. First, they often live with uncertainty about what caused their child’s autism, as well as possible guilt (no matter how undeserved) over whether they did or failed to do something that led to their child’s ASD.
Second, the core disability associated with ASD is a social one. Most parents hope for a warm and loving relationship with their child. It is bewildering to find you have a baby who does not like to be held, or a child who will not look into your eyes. Parents adapt, learning to love the way their child loves, but usually not without having passed through some confusion and pain.
Third, no matter what their specific ASD diagnosis or IQ, children on the autism spectrum often have problem behaviours, from refusal to sleep to intense and frequent tantrums to extreme rigidity. These behaviours can make living with them day-to-day very trying and lead to another variety of guilt: the kind you experience when you are not feeling loving toward a difficult child. In addition, such behaviours strain the entire family, impacting sibling relationships and marriages.
A number of studies have linked troublesome behaviours of children on the Autism Spectrum to high levels of parental stress. Such stress has been linked to higher rates of depression (3,4,5,6).
References
1. J Fam Psychol. 2010 Aug; 24(4): 449–457.
2. Connie Anderson, Ph.D.IAN Online Community Facilitator. Kennedy Krieger Institute, December 14, 2007.
3. Herring, S., Gray, K., Taffe, J., Tonge, B., Sweeney, D., & Einfeld, S. (2006). Behaviour and emotional problems in toddlers with pervasive developmental disorders and developmental delay: Associations with parental mental health and family functioning. Journal of Intellectual Disability Research,50(12), 874-882.
4. Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behaviour problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disability Research, 50(3), 172-183.
5. Blacher, J., & McIntyre, L.L. (2006). Syndrome specificity and behavioural disorders in young adults with intellectual disability: Cultural differences in family impact. Journal of Intellectual Disability Research, 50(3), 184-198.
6. Hammen, C. (2005). Stress and depression. Annual Review of Clinical Psychology, 1, 293-319.
Written by: Caroline Saunders
