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Parents of children on the Autism Spectrum
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Subject index
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Full list of topics
The children :
The children
Background :
Background: Professor Tony Bailey
Road to discovery :
Early signs; developmental milestones
Early signs; behaviours and action
Getting a diagnosis; assessment and being told
Getting a diagnosis; referrals
Feelings about diagnosis
Thinking about labels
Everyday life :
Communication; understandings
Communication; relationships
Going out
Strategies for going out
Fears, anxieties, sensory issues and meltdowns
Special interests and routines
Eating and sleeping
Activities
Self help skills
Parents and their relationships :
Effect on parents; rewards
Effect on parents; health
Effect on parents; feeling like a bad parent
Effect on parents; worrying about the future
Effect on relationships
Siblings
Employment and finances
Changes over time :
Positive change over time
Growing up
Thinking ahead
Experiencing education :
Types of schooling
Difficulties in education; getting a statement
Difficulties in education; disliking school
Further education
Treatments :
Medical and dietary interventions
Therapies
Support :
Support groups
Respite care
Dealing with professionals
Causes
Factors that have helped
Information
Messages to parents
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Parents of children on the Autism Spectrum
Subject index
Topic
Autism
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Parents of children on the Autism Spectrum
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Information
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Information
Information
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Parents of children on the Autism Spectrum
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Information
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Information
Information
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Autism
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Parents of children on the Autism Spectrum
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Age 18+
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Daryll - Interview 6
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Darryl ordered some books about Asperger syndrome and read bits to her daughter who was relieved that she “was not mad”.
Daryll’s daughter Tiffany was diagnosed with Asperger syndrome when she was 14 and is waiting for an agreement by social services to fund her social care during university.
Autism
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Parents of children on the Autism Spectrum
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Age 6-11
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Rachel - Interview 8
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Rachel thinks her son will have a hard time with puberty because he will be bothered by bodily changes.
Rachel’s sons, Thomas and Matthew, have both been diagnosed with Asperger syndrome. They both attend a mainstream primary school with support.
Autism
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Parents of children on the Autism Spectrum
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Age 12-17
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Dot - Interview 9
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Dot gives advice about the information she has found useful.
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.
Autism
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Parents of children on the Autism Spectrum
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Age 6-11
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Katrina - Interview 11
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Katrina particularly recommends the novel Curious Incident and says she has a thirst for more knowledge about ASD.
Katrina’s son, Callum was diagnosed with atypical autism when he was four years old. Callum has been home schooled for the past couple of years after negative experiences in the education system. He is having cognitive behaviour therapy to help him overcome his fears and anxieties.
Autism
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Parents of children on the Autism Spectrum
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Age under 6
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Caron - Interview 15
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Caron describes the two different groups she goes to.
Caron’s son, Leo, was diagnosed with autism when he was three. He attends a mainstream primary school but Caron worries that he is not receiving appropriate support.
Autism
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Parents of children on the Autism Spectrum
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Age 6-11
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Katrina - Interview 11
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Katrina describes how lovely it is not to have to excuse her son’s behaviour when she meets up with support group members.
Katrina’s son, Callum was diagnosed with atypical autism when he was four years old. Callum has been home schooled for the past couple of years after negative experiences in the education system. He is having cognitive behaviour therapy to help him overcome his fears and anxieties.
Autism
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Parents of children on the Autism Spectrum
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Age 18+
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Tracy - Interview 13
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Tracy says it is scary that there is no structure in place to support her daughter.
Tracy’s daughter, Nicola, was diagnosed with autism when she was six years old. Nicola is currently at a college for further education and will start working at the local hospital radio station when she finishes her course.
Autism
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Parents of children on the Autism Spectrum
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Age under 6
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Caron - Interview 15
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Caron would have liked more information at diagnosis rather than being told to go home and cope with it.
Caron’s son, Leo, was diagnosed with autism when he was three. He attends a mainstream primary school but Caron worries that he is not receiving appropriate support.
Autism
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Parents of children on the Autism Spectrum
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Age 12-17
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Rosie - Interview 18
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Rosie has found reading books reassuring.
Rosie’s son, Sam, was originally diagnosed with dyspraxia and then with autism when he was five years old. He attends a special school which has a specialist autism unit which he enjoys.
Autism
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Parents of children on the Autism Spectrum
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Age under 6
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Caron - Interview 15
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Caron thinks information on the internet focuses on high functioning rather than "middle of the road" autism.
Caron’s son, Leo, was diagnosed with autism when he was three. He attends a mainstream primary school but Caron worries that he is not receiving appropriate support.
Autism
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Parents of children on the Autism Spectrum
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Age 12-17
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Rosie - Interview 18
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Rosie’s knowledge of autism has grown since she was a staff nurse.
Rosie’s son, Sam, was originally diagnosed with dyspraxia and then with autism when he was five years old. He attends a special school which has a specialist autism unit which he enjoys.
Autism
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Parents of children on the Autism Spectrum
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Age 6-11
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Mary-Anne - Interview 25
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Mary-Ann has found the lack of free time she has hard because of the lack of appropriate respite care.
Mary-Anne’s son, Arthur, was diagnosed with Asperger syndrome, Tourettes syndrome and elements of ADHD and OCD three years ago. He attends a special school which he enjoys.
Autism
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Parents of children on the Autism Spectrum
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Age 18+
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Ciaran - Interview 26
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Ciaran thinks you need hands on experience to understand the issues.
Ciaran’s son was diagnosed with autism eight years ago and also has epilepsy and dyspraxia. He is currently doing a course at a college of further education but Ciaran worries about what he will do next.
Autism
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Parents of children on the Autism Spectrum
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Age 6-11
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Tony and Alison - Interview 28
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Alison used to read information about autism she was given when her son was diagnosed in bed in tears.
Tony and Alison’s son, Nathan, was diagnosed with autism three years ago. He is currently in a mainstream primary school and will move to a special school for his secondary education.
Autism
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Parents of children on the Autism Spectrum
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Age under 6
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Amanda - Interview 29
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Amanda was pleased with the information pack she was given.
Amanda’s two children have both been diagnosed with autism. They attend a special school for children with moderate learning difficulties which they both enjoy.
Autism
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Parents of children on the Autism Spectrum
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Age under 6
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Amanda - Interview 29
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Amanda was pleased with the information pack she was given.
Amanda’s two children have both been diagnosed with autism. They attend a special school for children with moderate learning difficulties which they both enjoy.
Autism
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Parents of children on the Autism Spectrum
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Age 18+
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Jacqui - Interview 31
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Jacqui recommends looking at www.researchautism.net where research and interventions are reviewed by experts.
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.
Autism
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Parents of children on the Autism Spectrum
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Age 6-11
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Nick and Vikki - Interview 34
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For Vikki, the support group as a “comfortable way of sharing information”. For Nick it’s a group of women gossiping.
Nick and Vikki’s younger son, Peter, was diagnosed with Asperger syndrome when he was five years old. He attends a specialist resourced provision attached to a mainstream primary school which he enjoys.
Autism
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Parents of children on the Autism Spectrum
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Age 6-11
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Jeanine - Interview 46
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The information often doesn’t deal with the things Jeanine really wants to know, like how to deal with anger outbursts.
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.
Autism
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Parents of children on the Autism Spectrum
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Age 18+
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John and Lynne - Interview 47
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Lynne found an internet support group better than anything she had ever read.
John and Lynne’s younger son, Gavin, was diagnosed with autism when he was 14 years old. He lives in a residential facility attached to his old school and John and Lynne feel he has had excellent support over the years.
Autism
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Parents of children on the Autism Spectrum
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Age 6-11
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Bobbi - Interview 30
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Bobbi uses the NAS website but now limits the amount of books she buys off their website each month.
Bobbi’s younger son, Charlie, was diagnosed with autism when he was five. He attends a local primary school with support and is getting on very well.
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