Parents of children on the Autism Spectrum

Effect on parents; health

One parent felt that the experience of having a child on the autism sectrum had helped her family’s health because of their change in diet: “They must be the healthiest eaters in the school because it is all real fruit, veg, plain meat cooked at home” (see ‘Medical and dietary interventions’). But most parents described a constant fight to try to get appropriate support and services for their children and many felt physically and emotionally drained by their experiences. One mother, for example, said she felt as though “her whole body was crying” after her experiences of trying to get an autism diagnosis for her daughter while another said she had been “to hell and back”.

Several parents of children with autism were on an antidepressant and felt stressed and emotionally drained. The unusual sleep patterns of many of the children and the constant battling for autism support services left parents exhausted (see ‘Eating and sleeping’). One mother was trying to organise support for her daughter to attend university and she said that it took her three hours in the evening to settle down.

One mother found it very difficult having to teach her son the same task over and over again. A few parents found it hard not really knowing what their children were thinking or how they should best bring them up. One mother said:

“I know everything there is to know about it, but when he goes and does certain things I still can’t stand back and sort of look at it and think well that is the Asperger's side of his interpretation of the situation… My first reaction is ‘don’t do that’.”

A few parents said it was hard to watch their children struggle. One mother said, “Watching them find life difficult because you want to protect them and you can’t”. Another said it was hard to see her son never be invited to other people’s houses and very sad when he noticed that other children didn’t want to play with him. One parent said:

“It is hard to see him when he gets upset, when he is traumatised by something, when the whole world seems to have collapsed over something that would be fairly minor to somebody else. It is hard to see him like that.”

Many parents described their children as loving (see ‘Communication; relationships’), but one mother admitted that the “saddest thing about autism is that you don’t really get love off your child”. She felt she was there to fulfil her son’s needs but had no emotional contact with him.

Last reviewed January 2015.

Last updated November 2010.

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