Parents of children on the Autism Spectrum

Dot - Interview 9

Age at interview: 48

Brief outline: Dot's son Joe was diagnosed with Asperger syndrome when he was 7 years old. He attends a specialist Asperger Unit which is on the site of a mainstream secondary school and he is getting on very well.

Background: Dot, a former social worker, is now a full time carer and lives with her son aged 15. Ethnic background/nationality: White British.

Audio & video

Dot is a single mother who lives with her 15-year old son Joe.  As a baby Joe had some developmental problems; he walked and talked late and was unresponsive to many sounds.  When Joe started school he found it difficult to settle and concentrate.  He didn’t sleep at night and would be completely tireless.  Dot gave up work and had to sit with him in school to try to help him concentrate.  Eventually a student teacher in the school suggested that he might be autistic and Dot took him to the GP who referred Joe for an assessment.  After a nine month wait, Asperger syndrome was diagnosed. 

Dot has found the general lack of awareness about Asperger syndrome very difficult.  People have tried to give her advice without really understanding how her son understands the world.  Once she had the diagnosis she celebrated as she thought she would be able to access the relevant services and support for Joe, but very little happened.  Dot felt very isolated and decided to set up a support group for other families with children with Asperger syndrome.  This has been a valuable source of support and information for Dot and has moved on to becoming campaign group to raise more awareness about Asperger syndrome.

Joe is now in a specialist Asperger syndrome unit attached to a mainstream school and is doing very well.  He will be sitting his GCSE’s soon and Dot hopes that he will be able to enter the mainstream school to do his A Levels in the second year of the sixth form.  He loves Pokemon and hopes to marry a rich woman who likes Pokemon too.

Joe thrives on routine and has set rituals to help him manage his days.  He is very fearful of death and dying and has a set routine at bedtime to help him to lessen his anxieties at night time.  He can only cope with one person at a time at home and is sensitive about food, buttons, labels, logos and so on. 

It has been important for Dot to overcome her own expectations for her child and how she would have liked his childhood to be, and to understand the way in which Joe experiences the world.  She has found talking to people about Asperger syndrome very useful, particularly people with Asperger syndrome and can now see many positive, good qualities in her son and people with AS. 


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