Parents of children on the Autism Spectrum

Jeanine - Interview 46

Age at interview: 46

Brief outline: Jeanine's son was diagnosed with autism when he was five years old. He attends a mainstream primary school with support and has made good progress at school.

Background: Jeanine, a local authority employee, lives with her daughter aged 11 and son aged 8. Ethnic background/nationality: White British.

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Jeanine, a public sector worker, lives with her daughter, aged 11, and son, Robert, aged 8. Jeanine had concerns about her son’s development for a long time because he seemed to understand the world in a differently to other children.. He would sit quietly and play with his dinosaurs or look at books for hours. He didn’t really relate well to other people, his eye contact was not good and he didn’t like to draw or scribble. When he was three, he began to regress and started to wet himself regularly. Jeanine kept taking him to the health visitor and doctors but was told that “he is a boy, he’s slow, he’ll grow out of it.”
When Robert started reception year, the teacher voiced some concerns and Jeanine went back to the doctor’s insisting on a full paediatric referral. Robert was seen by professionals over the next six months and Jeanine was given the diagnosis of autistic spectrum disorder when Robert was five. She was very upset, particularly as she was on her own with Robert when she was given the news. She was handed a sheet detailing the diagnostic criteria and felt that her son had been reduced to a box list.
Eighteen to twenty months after she had the diagnosis, Jeanine asked the school to support her in getting a statement [and within eight months Robert had a statement with 12.5 hours support. Robert has made good progress at school. He is doing well at maths but struggles with writing because of coordination difficulties. He has had some sessions with an occupational therapist.
Robert loves dinosaurs, Dr Who and David Attenborough nature programmes. He is on a gluten and milk free diet but Jeanine is uncertain whether or not this benefits him and would like more research and monitoring on this. Jeanine describes him as a lovely, loving, quiet boy with a great sense of humour. He is happy to try different activities but does get upset if his routines change. Jeanine finds his anger outbursts most difficult to deal with; they can be unpredictable.
Jeanine wants Robert to be able to “have an ordinary life and the ordinary chances that other children have.” She feels that policy decisions are made at national and local level which are not in the best interest of children with autism and their families. She feels more resources should be put into early intervention and support for families and children with autism. Jeanine has also found it difficult to work full time and manage appointments with professionals although her parents have been very supportive. She has found the best information and support has come through attending the Northern Partners in policy making courses and feels that these courses should be more widely available.



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