Parents of children on the Autism Spectrum

Jane - Interview 27

Female
Age at interview: 47

Brief outline: Jane's son, John, was diagnosed with Asperger syndrome when he was 9 years old. He is at a mainstream secondary school and hopes to study augmentation, artificial limbs and electronics at university.

Background: Jane, a Senior Lecturer (Neonatal and Child) Nursing, lives with her son aged 14 and daughter aged 9. Ethnic background/nationality: White British.

Audio & video

Jane lives with her son, John, aged 14 and daughter, aged 9.  Jane always thought that her son was different from birth.  He didn’t smile very readily from a few months old and was very sensitive to noises.   John was very advanced intellectually and, while Jane suspected that he might be on the autistic spectrum, there was no reason to follow it up while he was doing well at school.  

It was when he reached the age of about seven that the teachers began to find his behaviour problematic and, at the same time, John found it difficult to interact with other children.  He was very detached from the other children unless he felt that they had offended him in some way.  Jane asked the GP for a referral and the paediatrician diagnosed Asperger syndrome .

Jane felt that the private school he was at was not meeting his needs appropriately and she moved him to a state school which had more of a culture of acceptance of difference.  Since then, John has got on very well at school.

Jane receives 10 hours a week respite care which has been invaluable. John has had a series of tests done privately which have identified specific differences and provided a plan of action for areas to work on.  He is also on a gluten and dairy free diet which has increased his sense of wellbeing. 

John is hypersensitive to sounds, taste and touch.  He finds emotions difficult to comprehend and likes things to be presented logically and rationally.  He has no road safety or stranger danger awareness so is socially vulnerable.  He follows specific routines in the morning which are lengthy and take time.  He has various obsessions including Pokemon, internet literature and the Games Workshop.  He wants to go to Cambridge University to study augmentation and artificial limbs and electronics. John worries about his ability to live independently at university, but she is helping him learn the necessary skills.

Jane, a Senior Lecturer, finds that the real challenge for her is keeping from being exhausted by balancing work and some of the specific challenges of caring.  She hasn't come to terms with the lack of specific services and support for children and their carers, and the reliance on the parent to research, ask for and keep asking for support to prevent rather than simply react to crises.

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