The impact of ASD goes beyond the affected individual to impact the entire family. Parenting a child with ASD or ASD-like characteristics may present a unique and complex set of challenges.
Perhaps the most significant of these is managing complex and challenging behaviours. In the first instance, managing these behaviours and keeping the child safe can be difficult, particularly in an unfamiliar environment. Additionally, the unusual and sometimes disturbing behaviours most often come with no other physical symptoms.
As such, these behaviours occur without a diagnostic context, so that outsiders observing the behaviours have no understanding of their origin. This often results in parents feeling judged and facing assumptions of inadequate parenting. This in turn often leads to the social isolation of families who have trouble accessing mainstream services and community life, owing to the behavioural difficulties exhibited by their child.
In addition to these behavioural considerations, parents and carers of children with ASD and ASD-like characteristics often experience difficulty and uncertainty negotiating medical and support services, as well as taking on an advocacy role for their child. For school aged children, these difficulties extend to the school setting, as parents negotiate education options (mainstream schools, support classes, specialist needs schools, public education versus private education, independent school, or home schooling) and manage their child’s learning support plans or equivalent.
Further to these considerations, ASD or ASD-like characteristics are likely to place a significant financial burden on families. The average per family cost of caring for a child with ASD in Australian is estimated at $34,900 per year, with $29,200 of this a result of lost income, often due to reduced working hours, to provide care for the child.
These practical issues often overshadow any emotional stresses associated with parenting a child with ASD or ASD-like characteristics.
For example insecurities regarding parenting competence, grieving for the future parents had anticipated for their children, and guilt around the wellbeing of other children. It is no surprise then that the parents of children with ASD report higher levels of stress than other parents including parents of children with other disabilities.
In addition to the social isolation noted above, research indicates these pressures place family members at an increased risk of developing mental health problems, such as depression and anxiety, as well as placing significant stress on familial and social relationships. Access to services and support are critical to both children with ASD and ASD-like characteristics as well as their families. It is vital to foster positive family relationships and build support networks to enable the entire family unit to manage life with ASD or ASD-like characteristics.