Parents of children on the Autism Spectrum

Karen - Interview 23

Age at interview: 39

Brief outline: Karen's daughter was diagnosed with Asperger syndrome when she was 10 years old. She has since been diagnosed with Oppositional Defiance Disorder and her mother has removed her from school because appropriate support was not provided.

Background: Karen, a full time carer, lives with her two daughters aged 14 and 12. Ethnic background/nationality: White British

Audio & video

Karen, a full time carer, lives with her two daughters who are aged 14 and 12. Karen describes a general growing realisation that Nicole was different to other children. Nicole didn’t cope with change well and was not sociable with other children. Her behaviour was difficult at school and the family were referred for counselling because the school felt that Karen was not disciplining her daughter sufficiently. A clinical psychologist who sat in on the meeting suggested that Nicole had Asperger syndrome and she was formally diagnosed when she was ten years old. Since then, Nicole has been given the additional diagnosis of Oppositional Defiance Disorder.

Nicole has a number of obsessions including the number three, washing her hands and fears about being watched. Her passion is horses and, while she can be generally clumsy, she is an accomplished horserider. She is intelligent, artistic and loves playing computer games.

For Karen, the biggest battle has been with education. Nicole has found school very difficult and the schools she has attended have not provided appropriate support. Karen decided to home school her daughter when Nicole’s health deteriorated as an outcome of the stresses and anxieties associated with school. This was not successful, however, and Nicole returned to a school twenty miles from home on a reduced timetable. Again, appropriate support for Nicole was not provided and after numerous incidences in which Karen was called into the school about Nicole’s behaviour, Nicole left school during the day and was found walking along a country road by a motorist. Since then Karen has kept Nicole at home and is fighting to get her a place at a specialist residential school for children with Asperger syndrome.

Karen has not been able to work over the past few years because of constant meetings at school and phone calls about Nicole’s behaviour. She feels that the education authority and professionals have treated her as an enemy rather than working with her to support Nicole. There have also been considerable financial implications because Karen has not been able to work and the experience has had an impact on Karen’s relationships with family and friends.


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