Jacqui – Interview 31

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.

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.

Jacqui says you have to fight for whatever your child needs; nothing is given to you very easily.

Gender Female

Jacqui recommends looking at www.researchautism.net where research and interventions are reviewed…

Gender Female

Jacqui talks about how terms have changed over the years and how her son was originally labelled…

Gender Female

Jacqui thinks a lot of the time professionals don’t want parents to tell them things; you have…

Gender Female

Jacqui thinks a lot of heartache and depression could be avoided if more training was provided…

Gender Female

Jacqui says it doesn t stop when you get to 16; they go into adult services of which there are…

Gender Female

Jacqui describes how the autism spectrum is not stagnant and children move along it, doing the…

Gender Female

Jacqui has tried various therapies and suggests caution after experiences with magnets and dead…

Gender Female

Jacqui’s family has a history of severe food allergies so she put her children on gluten- and…

Gender Female

Jacqui thinks that the emphasis in mainstream education is wrong for many children with autism…

Gender Female

Jacqui took Luke out of school when he was 13 because the education system did not meet his needs.

Gender Female

Jacqui’s daughter feels like she is living in the Truman Show.

Gender Female

A professional told Jacqui that if he had Luke for three months he could stop him behaving in the…

Gender Female

Jacqui is exhausted by constantly having to fight for services and support for her children.

Gender Female

Jacqui talks about the difficulties that arise if she tells her son to get a little bit of…

Gender Female

Jacqui describes how mealtimes at her house would seem bizarre to other people because her…

Gender Female

Jacqui has to cut the label off clothes for Ben when she buys them in the shop.

Gender Female

Jacqui has created extra work for herself by teaching Ben to make his own breakfast.

Gender Female

Jacqui’s son Ben is a born worrier while Joe is like Billy Whizz.

Gender Female

Jacqui talks about the major planning that goes into a trip out and how nice it would be to just…

Gender Female

Jacqui talks about how different health professionals use different labels for the same disorder.

Gender Female