Parents of children on the Autism Spectrum

Thinking about labels

Some parents reflected on how they felt about their children being labelled as ‘autistic’. They described the dilemma of not really wanting their children to be labelled but knowing that without the label, they wouldn't be able to get support for their children. Some parents felt that having the label meant that teachers had to take notice of their children, particularly in mainstream schools (see ‘Difficulties with education; getting a statement'). As one parent commented “There is no point in saying your child has just got emotional or behavioural difficulties because that doesn’t get you any sort of understanding or any support in the classroom”. Having the label also helped parents to get financial support such as Disability Living Allowance for those under 16 and Personal Independence Payment (PIP) for those older than 16 (see ‘Employment and finances’).

Some parents found it difficult to accept that their children were ‘disabled’. One mother had been very upset when the head teacher of her son’s school congratulated her on getting the diagnosis; “I remember feeling so upset because I couldn’t explain to her at that moment that he had this label which suddenly seemed terrible”.
Having the label also made life easier in other ways. One parent, for example, described how much easier she found explaining her son’s behaviour to other people once she had the diagnosis because people understood the term autism rather than labels like ‘developmentally delayed’.

Some parents would have liked more information and support at the point of diagnosis instead of just being given the label and feeling they were being left ‘to get on with it’ (see ‘Information’). One parent found out about the diagnosis from the education authority who read it off her daughter’s statement. This was a particularly difficult way to hear the news.

Last reviewed January 2015.

Last updated January 2015.

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