Parents of children on the Autism Spectrum

Effect on parents: feeling like a bad parent

Many parents had felt, particularly before they knew the diagnosis and understood the nature of autism, that they were seen by others, or maybe actually were, bad parents (see ‘Getting the Diagnosis; assessment and being told’ and ‘Feelings about diagnosis’). Some parents had been persuaded to go on parenting courses, and even after the diagnosis some still believed that they were somehow at fault, partly because children on the autism spectrum have no recognisable physical signs and some people didn't really believe that the children were on the autism spectrum. One couple described being labelled as “totally inadequate parents” as very hurtful.

Some parents found the invisibility of autism difficult and the lack of understanding and awareness of other people and this is discussed further in ‘Going out’. As one mother said, “When you go to public places and to parties and things, people sort of look, you know and just that hurts sometimes”.

One mother still sometimes wondered if she could have prevented something from happening, twenty years after her daughter was born. Another parent described how, “I mean I felt bad enough as it was because I didn’t know how to handle him, but then I thought ‘Well how would I know how to handle him? Babies aren’t born with instruction books and I didn’t know anyone with a child with Asperger's”.

Two mothers had been suspected by health professionals of making up their children’s symptoms, this is also known as 'Munchhausen by Proxy'. This was distressing; as one mother said, “Why on earth would I say there was something wrong if there wasn’t?... I could not believe it”. A few single or divorced parents felt that educational or health professionals put their children’s difficulties down to their family situation and this, again, was upsetting. One single father felt that people felt that he was not able to bring his son up properly because he was a man.

Feeling blamed and not listened to was hard for parents who thought that their real concerns were being dismissed and their expertise as parents ignored. One mother commented “I think you have to trust a mother’s instinct… various professionals that have been speech and language therapists for a long, long time failed to spot what I think were obvious signs”.

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Making comparisons
Being around other children who were not on the spectrum could be difficult. As one mother said, “You look round at another fifteen year old that is off getting girlfriends and I am still trying to wash his face and get rid of his dummy. It can be disheartening”. Another said:

“I get quite anxious sometimes and fearful that you know I see my friends and the children in my family, you know doing all the things I should be doing and that hurt sometimes. You know when you go to a friend’s and, you know, the child is talking away to you and playing and you know, Georgia is sort of in the back garden and chasing the dog around the garden. And … that is quite hard.”

Last reviewed July 2017.

Last updated November 2010.

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