Autistic Spectrum Condition (ASC) is a developmental condition, which is characterised by difficulties in social interaction, social communication and rigidity of thought; referred to as the ‘triad of impairments’ as defined by Wing and Gould in 1979. More often children with autism will also have additional difficulties, thus further compounding the already profound impact on the family. The impact of having a child with autism varies from family to family, however it generally affects all members and is far reaching, impacting emotionally, physically and financially. Diagnosis
Difficulties in obtaining a diagnosis of autism are well documented, and as children with autism often display developmental difficulties from birth, families experience much early frustration as said by Lawson (2000), ‘Families... may even think that their child is simply out to make life difficult for them. More often than not, the child simply hasn’t understood’. In addition the delay in diagnosis can lead to its own stresses due to uncertainty, as well as delay in appropriate interventions and specialist educational provision. Even before diagnosis, the majority of families are aware of early abnormalities in their child’s development, this was confirmed in the pilot study by Midence & O’Neill (1999). This study also concluded an earlier diagnosis is needed, and better awareness of developmental problems in young children is needed by health professionals, as once diagnosed parents can begin the adjustment process, and begin to comprehend the diagnosis and plan for the future. The diagnosis itself can have a significant impact on the parents, as it often follows many years of struggling to find an explanation for their child’s behaviour. Nissenbaum et al (2002) studied the impact of diagnosis on families and professionals and they found that parents felt relief to be a benefit as they no longer felt that the problems experienced were due to their poor parenting skills and they have an explanation for themselves but also others of the unusual behaviour of their child. However the diagnosis also brings drawbacks with despair, anger, helplessness, guilt and in some cases disbelief of the diagnosis. Bruce & Schultz (2002) studied the notion of ‘non-infinite loss’, defined as the ongoing sense of grief experienced by parents caring for children with severe disabilities. They also examined the issues relating to the way professionals interact with the parents who are experiencing non-infinite loss. Bruce and Schultz stated that the parental trauma starts with the diagnosis, at which the intensity of the parent’s emotions limit their ability to understand and register what is being said. Adjustment & Coping strategies
After the diagnosis parents will undergo a period of adjustment, all their plans and hopes for their child’s future (and to some extent their own future as well) will have to be changed. Attfield & Morgan (2007), as did Baron-Cohen, referred to this adjustment period as the parental grief cycle, as parents come to terms with the reality of the diagnosis, they go through a period of adjustment, a cycle of grief akin to bereavement, with stages of shock, anger, gilt and denial, often adopting the coping strategy of withdrawing from the world and seeking information about the condition. Failure to acknowledge these emotions can store up future psychological problems, lead to marital difficulties and affect relationships with other children in the family. Parents bear the brunt of the family responsibility with mothers often feeling the impact of their child’s autism more personally than others. Gray (2003) found that mothers, in particular experience guilt and depression and also attributed that the less severe impact of the child’s autism on most fathers appeared to be at least partially due to the gender roles i.e. that the father works and the mother rears the children. Benson (2010),...
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