Abstract
Autism spectrum disorder (ASD) is a pervasive neurodevelopmental disorder which often
creates pronounced additional challenges to the nuclear family. This disorder has been
extensively explored from the bio-medical and social perspective. However, there seems to
be a lack of understanding and research regarding the embodied experience of ASD within
significant others, such as parents. Previous research indicates that the embodied experience
of parents raising a child with ASD is as ambiguous as the disorder itself. On the one hand,
parents experience various challenges and increased marital conflict while, moreover they
report increased compassion and commitment as a result of their child with ASD. In South
Africa, the embodied experiences of ASD are particularly limited. Contextual factors within
South Africa such as a lack of validated diagnostic tools, specialised care, increased levels of
stigma and poverty place parents raising a child with ASD in a particularly difficult context.
With this study we provide a phenomenological conceptualisation of the marital
relationship of parents raising a child with ASD in South Africa. This conceptualisation is
grounded in the theory of dys-appearance. According to this theory our body generally finds
itself receding into the unconscious. However, challenges posed by pain or disability may
bring the body into consciousness upon which the body is perceived as foreign and alien in
the world. We argue that the marital relationship finds itself at times in a state of dysappearance
in the context of raising a child with ASD.
To meet this goal, I (first author) conducted semi-structured interviews with three
married couples who had a child with ASD. Through the application of interpretative
phenomenological approach we found that all the couples contextualised themselves in the
experience of loss. Within this narrative of loss, their relationship alternated between
disconnection and connection. The challenges faced by ASD, as well as the lack of
knowledge from significant others created physical and emotional distance between partners.
However, couples also adapted to their new reality and as they became reliant on each other...
M.A. (Clinical Psychology)