Parenting Children with Autism is Stressful!
Research has confirmed what we already know about parenting a child with Autism. It is stressful. In fact the research suggests that parenting a child with Autism is more stressful than parenting children with other disabilities such as Downs Syndrome.
Cashin (2004) describes Autism as a vortex that consumes those around it, describing a life of ‘occupying and pacifying’, certainly something I recognise from my own experiences of raising kids on the spectrum. Autism is all consuming, if you are not careful it takes over your life. In fact my husband set me a challenge of not mentioning the ‘A’ word for a whole weekend (which I thought would be easy) I lasted about 2 hours!!!
But why is parenting a child with autism so stressful? Research tells us two of the main contributors to parental stress are managing behaviour and family relationships (Hall & Graff, 2010). As a practitioner, I have worked with parents for over 12 years and the messages throughout the research (Hoogsteen & Woodgate, 2013: Sharpley & Bitsika, 1997; Werner DeGrace, 2004) echo the voices of those whom I have had the privilege to work with. However, a key contributing factor to the level of stress we face is the fact that Autism is a ‘hidden’ disability and as such parents are often exposed to judgemental responses from those around them.
I must admit that this has been one of the most distressing and isolating experiences for me. When I was heavily pregnant with my third child my son was 9 years old (and not yet diagnosed). He found school challenging, we know now that this was because he had autism and had sensory difficulties which meant he was constantly in a state of ‘overload’, but at the time we just knew he wasn’t coping. He was often excluded and typically seen as the ‘naughty boy’ but that wasn’t the child I knew at home. I remember receiving an anonymous letter telling me how I was ‘too soft’ and how I had made ‘mistakes as a mother’ and how he was going to be out terrorizing the neighbourhood (he is now 24 and in the middle of doing his phd after getting a 1st in his Degree!!!). But my son looked ‘normal’ and all anyone saw was the behaviour.
Now I would say, look closer, look harder, it is there and if you look hard enough it will reveal itself to you.
If you are interested in finding out more about what the research says about parenting a child with autism, then get in touch and find out when there is a workshop in your area.
Cashin, A. (2004) Painting the Vortex: The Existential Structure of the Experience of Parenting a Child with Autism, International Forum of Psychoanalysis, 13, pp 164-174.
Hall, R.H. & Graff, J.C. (2010) Parenting Challenges in Families of Children with Autism: A Pilot Study, Issues in Comprehensive Pediatric Nursing, 33, pp187-204.
Hoogsteen, L. & Woodgate, R. L. (2013) The Lived Experience of Parenting a Child with Autism in a Rural Area: Making the Invisible, Visible, Pediatric Nursing, 39(5) pp233-237.
Sharpley, C.F. & Bitsika, V. (1997) Influence of gender, parental health and perceived expertise of assistance upon stress, anxiety, and depression among parents of children with autism, Journal of Intellectual & Developmental Disability, 22(1), pp19-29.
Werner De Grace, B. (2004) The everyday occupation of families with children with autism. American Journal of Occupational Therapy, 58, pp 543-550.