1 Family life
All members of a family are likely to be affected when a child receives a diagnosis of an autism spectrum condition. Of course, families may have concerns even before diagnosis, and may have developed ways of coping with a child whose behaviour does not fit typical expectations. On diagnosis, close family members are typically affected the most, because they engage with their autistic family member on a daily basis.
Parents may experience a range of emotions, including initial grief that the child is not neurotypical, but perspectives change. You may recall the video clip from Week 3 [Tip: hold Ctrl and click a link to open it in a new tab. (Hide tip)] : after the shock and grief of discovering that his son Zack was autistic, Mark realised that Zack was just the same person as he had been before diagnosis. Another parent describes her primary feeling as relief. Her son Louis was finally diagnosed with Asperger syndrome, ADHD and learning difficulties at the age of 6, after years in which Melanie had struggled to have her concerns taken seriously:
My feelings were of total relief … after years of being told he was perfectly normal and behavioural management tactics would solve it. He was described as a 'whirling dervish' by the local paediatrician! Impossible to control his behaviour in any way. Diagnosis meant I could get a Statement at school. Phew! But I had to fight for it.
Siblings may also experience a variety of feelings, including resentment, embarrassment and guilt. However, research shows that siblings also come to see autism in the family as ‘normal’, developing close relationships with their autistic sibling(s) (Preece, 2014).
Members of the wider family such as grandparents may be a source of support, but also conflict (Hillman, 2007). For instance, they may have difficulty accepting the diagnosis, insisting that their grandchild will grow out of their difficulties. Some grandparents may even believe that the parents are responsible for their child’s ‘difficult’ behaviour. In Melanie’s case, her father’s attitudes to Louis evolved from traditional ideas about ‘dealing with bad behaviour’ to providing support:
Grandpa (my Dad and the only grandparent on my side) took a while to understand that a good hiding wasn't going to work and finally rose to the challenge – [he was] enormously supportive to me. Most others in the family accepted it well. At last! An explanation!