Parents of children on the Autism Spectrum

Jacqui - Interview 31


Brief outline: Five of Jacqui's children are on the autistic spectrum and, as they have grown older, Jacqui has found that adult services have few resources and there is no support to help ease her children into employment.

Background: Jacqui, a full time carer, lives with her seven children aged between 23 and 10. Ethnic background/nationality: White British.

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Jacqui, a PhD student, lives with her seven children who are aged between 23 and 10.  One daughter, Sarah, and four of her sons, Mat, Luke, Joe and Ben, are on the autistic spectrum.  Jacqui describes how her family life is very normal to her and her children, but health professionals have little understanding of what life is like with ASD children. 

Mat (23) was born at 24 weeks, walked fast and didn’t speak till he was over three. His official diagnosis is PDD NOS (pervasive developmental disorder not otherwise specified).  Sarah (20) was a very quiet baby and managed to get through school effectively by maintaining strict routines and focusing on her work.  She is now at university.  Luke (18) constantly screamed as a baby. He would walk around in circles, tap everything with a pencil and insist on wearing a balaclava.  He was diagnosed with dyspraxia initially and then with Asperger syndrome when he was 8.  He found school very difficult with no statement or support and Jacquie eventually removed him at 13 because he was so badly bullied.  He has written three books including Freaks, Geeks and Asperger Syndrome and is concentrating on his photography. 
Joe (14) was born early and has had many problems with food intolerances.  He has been diagnosed with ADHD and is constantly on the go. He has acute hearing, smell and vision and has perceptual problems that rule his life.  He is very destructive and Jacqui has a skip permanently outside the house to cope with the fall out. 

Ben (10) was born at 25 weeks and was diagnosed with cerebral palsy when he was 10 months old.   When he was 3 he was diagnosed with profound autism.  Jacqui describes how, at that time, he had no speech, he would wiggle his fingers in front of his face and laugh hysterically.  Now he talks readily (on topics that he likes) which highlights how there is movement on the spectrum. 

Jacqui has found, since her children have grown older, that adult services have few resources and there is no support to help ease her children into employment.  While they are extremely talented in different ways, there is a lack of understanding and awareness about how hard it is for people on the autistic spectrum to try to fit into mainstream life.


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