The KOC Blog

The Cost of Autism Spectrum Disorders and the Value of Caregivers

by Jane Isbister | Oct 30, 2014

The Cost of Autism Spectrum Disorders and the Value of Family Caregivers

By Jim McHardy

Every weekend at the Kinark Outdoor Centre we have the privilege and pleasure of hosting a group of families who have a child on the autism spectrum, and every weekend we marvel at the skills, patience and energy that parents, aunts, grandparents and siblings bring to the role of caregiver for an ASD child. The Kinark Outdoor Centre is gifted with a highly skilled and experienced staff group, but we all wonder how one plays the role of caregiver 24/7 for a lifetime for an individual with a neurological condition. We constantly learn from those special parents that bring their children to the Centre and we are motivated by what they do. Of course we get to go home after the weekend and recuperate. We are also paid for providing respite, but parents do not get paid for doing the same thing. It is estimated that the lifetime cost of providing lifetime care for an individual diagnosed with autism is $5.5 million higher then someone without.1 Of course most families do not have the income to buy this care, so they end up providing the care themselves at the expense of lost income, mental health and family relationships. If one in 88 children are now being diagnosed with autism, where parents unable or unwilling to provide this care, the burden on the community and state is unfathomable.

We know and believe that all parents, but especially parents/caregivers who have a child diagnosed with autism are a valuable asset that need to be encouraged, nurtured, and supported through education, resources and community programs so they can play the caregiver role. I also feel that parent support and respite should be equally as important as research and behavioral interventions.

1 Dudley, C.; Emery, J.C.H.; The Value of Caregiver Time; University of Calgary –The School of Public Policy Research Papers; Vol 7, Issue 1, Jan 2014