Parents of children on the Autism Spectrum

Employment and finances

Many parents’ working lives had been affected by their experiences of having responsibility for caring for a child/ren on the autism spectrum. Several mothers had given up work or not returned to work as they had originally planned when they had children. The reasons included:

  • A lack of appropriate childcare provision available
  • Some of the children needing a lot of support in school and after school
  • Appointments with various health professionals during normal working hours, which were difficult to attend when employers were inflexible or unsupportive
  • Simply feeling too tense and preoccupied to cope with the demands of work

One parent stacked shelves at night for years so that she could be available during the day in case she was needed. Another parent who worked full-time talked about the tensions she felt between wanting to work because her work was very important to her, and feeling exhausted because she always had to look as though she was coping.

Some parents had changed their career path to work in children’s services as a result of their experiences. One father worked full-time as the organiser of the support group he had helped set up. A few parents who worked in local government had shifted into children’s services through an interest in helping to shape and become involved in support and service provision. One mother had been paid to write newspaper articles about her experiences which was “lovely”.

In addition to not being able to work, parents talked about other financial costs such as therapies, diets and the expensive hobbies some of the children had. One parent talked about the cost of her son’s “intense need to buy all the Pokemon, all the train sets, all the Brio and all the Games Workshop”. Other parents had spent thousands of pounds on therapies and the cost of following a gluten or dairy free diet was high although some could get products on prescription from their GPs. One mother said, “I haven’t yet learnt the art of making decent gluten free bread”.

Welfare benefits
People on the autism spectrum and parents of children on the spectrum may be entitled to a range of welfare benefits, such as Disability Living Allowance for those with children under 16 and Personal Independence Payments (PIP) for those over 16 and Carer’s Allowance (see GOV.UK for more details). Some parents felt that these allowances made a difference to their life though the Disability Living Allowance (DLA) forms were confusing, depressing and difficult to fill in. As one father said' “You have to fight for it, you know, you have to make out like he is the Tasmanian devil, the child, you have got to make out he is awful and because otherwise you won’t (get) anywhere.”

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Last reviewed July 2017.

Last updated January 2015.


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