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Nerves & brain
Parents of children on the Autism Spectrum
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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
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Parents of children on the Autism Spectrum
Subject index
Clip
Autism
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Parents of children on the Autism Spectrum
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Age 6-11
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Sandy - Interview 1
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Sandy’s sons love Butlins which works well because it is contained.
Sandy’s older son, Joseph, aged 8, was diagnosed with autism one month before his second birthday. Her younger son, Adam, aged 6, was diagnosed with autism aged eighteen months. Both boys attend a special school which they enjoy.
Autism
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Parents of children on the Autism Spectrum
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Age 6-11
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Sandy - Interview 1
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Sandy remembers the first time she went to Sainsbury’s without apologising for her sons’ behaviour.
Sandy’s older son, Joseph, aged 8, was diagnosed with autism one month before his second birthday. Her younger son, Adam, aged 6, was diagnosed with autism aged eighteen months. Both boys attend a special school which they enjoy.
Autism
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Parents of children on the Autism Spectrum
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Age 6-11
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Liz - Interview 2
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Liz finds that if an outing, like visiting a friends house, is a success, getting her son to leave can be “hell”.
Liz’s son, Jonas, aged 11, has been diagnosed with epilepsy, ADHD and Asperger syndrome and Raphe, the youngest son, has Downs Syndrome. Jonas attends the local mainstream primary school but Liz is worried about the move to secondary school.
Autism
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Parents of children on the Autism Spectrum
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Age under 6
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Nicki and Mark - Interview 14
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Mark used the NAS cards at the cinema.
Nicki and Mark’s son, Tyler, was diagnosed with autism when he was four years old. He attends a special school and they are delighted with his progress.
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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Daryll thinks it would be easier if her daughter had “AS sort of tattooed on her forehead” so everyone knew.
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 12-17
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Daniel - Interview 7
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Daniel describes how people constantly tell you how to look after your child.
Daniel’s son, Jonathan, was diagnosed with autism in association with hyperlexia when he was aged 4. Daniel has home-schooled his son for the past four years.
Autism
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Parents of children on the Autism Spectrum
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Age 12-17
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Daniel - Interview 7
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Daniel feels has to constantly tell people about autism because they think he is bringing his son up wrong.
Daniel’s son, Jonathan, was diagnosed with autism in association with hyperlexia when he was aged 4. Daniel has home-schooled his son for the past four years.
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 felt too tense to carry on working. Not working is “a bit odd” because she has always worked.
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 6-11
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Katrina - Interview 11
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Katrina talks about the constraints on her family because her time has been taken up with her son.
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 6-11
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Katrina - Interview 11
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Katrina finds the way other people look at her son one of the hardest things to deal with.
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 6-11
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Helen and Jason - Interview 12
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Helen explains why her son cannot go to soft play areas.
Helen and Jason’s older son,Joshua, was diagnosed with Asperger syndrome when he was five years old. He attends the local mainstream primary school but his parents are worried about his education and would like to find specialist provision for him.
Autism
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Parents of children on the Autism Spectrum
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Age under 6
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Nicki and Mark - Interview 14
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Nicki was very upset when a member of staff “tutted” loudly at her son’s behaviour at a supermarket checkout.
Nicki and Mark’s son, Tyler, was diagnosed with autism when he was four years old. He attends a special school and they are delighted with his progress.
Autism
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Parents of children on the Autism Spectrum
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Age under 6
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Nicki and Mark - Interview 14
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Nikki and Mark have tried not to create routines for Tyler.
Nicki and Mark’s son, Tyler, was diagnosed with autism when he was four years old. He attends a special school and they are delighted with his progress.
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 difficulties involved in going out with her son.
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 under 6
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Caron - Interview 15
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Caron says she “dies of embarrassment” sometimes when she’s out with her son.
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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Catherine - Interview 16
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Catherine wants her daughters to be out and about in public and explains to people that they can find it difficult to interact with others.
Catherine and her husband have two teenaged daughters, both of whom have been diagnosed with autism. Catherine has homeschooled her daughters using an ABA programme for several years.
Autism
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Parents of children on the Autism Spectrum
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Age 12-17
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Catherine - Interview 16
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Catherine talks about how her daily life has changed and how “it is painful to give up everything that you anticipated for your child”.
Catherine and her husband have two teenaged daughters, both of whom have been diagnosed with autism. Catherine has homeschooled her daughters using an ABA programme for several years.
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 son used to put vegetables in his mouth at the supermarket.
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
>>
Age 18+
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Christine - Interview 20
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Christine's experiences of holidays with Brian.
Christine’s son, Brian, was diagnosed with Asperger syndrome four years ago after being wrongly diagnosed with schizophrenia when he was 14. He lives at home now after years in a residential home and attends an autism day centre during the week.
Autism
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Parents of children on the Autism Spectrum
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Age 18+
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Christine - Interview 20
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Christine describes a trip on Eurostar with Brian.
Christine’s son, Brian, was diagnosed with Asperger syndrome four years ago after being wrongly diagnosed with schizophrenia when he was 14. He lives at home now after years in a residential home and attends an autism day centre during the week.
Autism
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Parents of children on the Autism Spectrum
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Age 12-17
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Christine - Interview 21
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Christine’s daughter either talks to strangers or runs off in supermarkets.
Christine’s daughter, Elisabeth, was diagnosed with autistic spectrum disorder complex, ADHD, separation anxiety, Oppositional Defiance Disorder and learning difficulties. She is currently out of school because of the lack of effective support.
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 adapts the situation to Charlie rather than not going on holiday.
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.
Autism
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Parents of children on the Autism Spectrum
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Age 12-17
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Mike - Interview 22
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Mike’s family has tried to go out and do “normal family things” but they have had to adapt considerably.
Mike’s youngest son, Andrew, was diagnosed with autism when he was three years old. He moved to a specialist residential school a year ago, after spending a year excluded from school because of challenging behaviour.
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 6-11
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Mary-Anne - Interview 25
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Mary-Ann explains the tension she feels between not wanting people to judge her as a bad parent and knowing that her son sometimes cannot help his soc
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 under 6
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Jane and Dan - Interview 57
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Jane and Dan talk about feeling upset and frustrated about their son’s diagnosis.
Jane and Dan’s son was diagnosed with autism six months ago. He has a sleep disorder and has some difficulties eating food.
Autism
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Parents of children on the Autism Spectrum
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Age under 6
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Jane and Dan - Interview 57
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Jane feels close to tears sometimes when her son has a tantrum in public.
Jane and Dan’s son was diagnosed with autism six months ago. He has a sleep disorder and has some difficulties eating food.
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 some things have become easier such as her son learning not to shout at people who are smoking.
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 6-11
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Tony and Alison - Interview 28
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Tony and Alison say there is nothing worse than “people gawping at you when your child is having a fit”.
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 6-11
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Tony and Alison - Interview 28
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Alison got T-shirts printed saying “I’m not naughty, I’m autistic” to make going out easier.
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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When Amanda goes out with her son the general public see him as a spoiled brat whose mum always gives in to him.
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 describes being exhausted by “being on high alert all the time”.
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
>>
Age 18+
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Jacqui - Interview 31
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Jacqui talks about the major planning that goes into a trip out and how nice it would be to just go out to the pub for lunch.
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
>>
Age 18+
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Jacqui - Interview 31
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Jacqui’s son Ben is a ‘born worrier’ while Joe is like Billy Whizz.
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
>>
Age 6-11
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Nick and Vikki - Interview 34
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Nick and Vikki talk about a recent trip to B&Q.
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
>>
Age 6-11
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Nick and Vikki - Interview 34
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Vikki describes how “it breaks her heart” to see her son playing with children much younger than him.
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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Helen - Interview 41
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Helen has grown a thick skin over the years and will tell people what she thinks.
Helen’s older son, Joseph, was diagnosed with autism when he was 7 years old. Joseph now attends an independent church school after a negative experience in a mainstream primary school and is making good progress with 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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Kirsten - Interview 43
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Kirsten runs on adrenaline all the time when she is out with her son.
Kirsten’s middle child, Andrew, was diagnosed with autism when he was two. He attends a mainstream primary school in the mornings and does a combination of ABA and DIR therapies in the afternoons.
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 finds it difficult if Gavin needs to go to a toilet when she is out in public with him.
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
>>
Age 18+
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John and Lynne - Interview 47
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Lynne will talk to Gavin in a way that lets people know “that something is not quite as it should be”.
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
>>
Age 18+
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John and Lynne - Interview 47
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John finds it hard to decide whether or not to tell people that Gavin has autism.
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
>>
Parents of children on the Autism Spectrum
>>
Age 6-11
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Bobbi - Interview 30
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Bobbi has found not being able to do things as a family one of the hardest things to deal with.
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.
Autism
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Parents of children on the Autism Spectrum
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Age 6-11
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Nuala - Interview 56
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Nuala and her husband have got into the habit of socialising separately and only manage to go out together on special occasions.
Nuala’s son, Robert, was diagnosed with Asperger syndrome when he was eight years old. He attends a mainstream primary school with support and is now much happier and settled.
Topic
Autism
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Parents of children on the Autism Spectrum
>>
Going out
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Going out
Going out
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Parents of children on the Autism Spectrum
>>
Going out
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Going out
Going out
Autism
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Parents of children on the Autism Spectrum
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Strategies for going out
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Strategies for going out
Strategies for going out
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Parents of children on the Autism Spectrum
>>
Strategies for going out
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Strategies for going out
Strategies for going out
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