Parents of children on the Autism Spectrum

Jane and Dan - Interview 57

Male
Age at interview: 26

Brief outline: Jane and Dan's son was diagnosed with autism six months ago. He has a sleep disorder and has some difficulties eating food.

Background: Jane and Dan, both students, have two children aged 4 and 3. Ethnic background/nationality: White British and Black Carribean.

Audio & video

Jane and Dan, both students, have two children; E aged 4 and M aged 3. Jane describes how they both thought that there was something different about M from the age of about 9 months because he had some unusual behaviours.  M did not sleep properly at night until he was two and a half years old and now has medication for a sleep disorder. He has some difficulties eating food and for a long time would only eat weetabix and milk.  He had lots of different tests and Jane eventually begged her doctor to refer him to a paediatrician because his behaviour was getting worse. After a gap of several months, M was diagnosed with classic autism seven months ago. 

Jane and Dan describe feeling relieved and comforted to get the diagnosis because it helped them to understand M better and they felt better able to help him. They want M to lead as normal life as possible and to give him the same opportunities that other children have. 
 
Jane, who has been a full time carer for the past ten months, describes feeling frustrated by the number of appointments M has and the way in which she has to repeatedly tell the same details over and over again.  Dan has also found it difficult to take time off work for appointments despite working in the education system. Those professionals who have got to know the family and worked alongside them over time have been very helpful.  Both Jane and Dan feel that the M having autism has had a massive impact on their family life and they structure most activities around M so that he can join in.  M has tantrums which are difficult to control and has no sense of danger which can make going out difficult.

Jane is less optimistic than Dan about M’s future and she gets frustrated and upset when she goes out with M and other people stop and stare.  She is particularly concerned because she feels that M is doubly disadvantaged because he is mixed race and has autism. Jane is also concerned about what will happen to M when they both die whereas Dan feels confident that M will be able to lead some sort of independent life and have the support of his sister who has a very close, loving relationship with him.

Jane has become involved in campaigning for services locally through support groups and describes this as a positive and empowering experience. M loves being outside, running around and getting muddy. The family has a pet dog which he enjoys taking to the park and he has just got his five metre swimming badge.

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