Simon Wallace, Research Director Overview of the One in a Hundred Report.

Simon Wallace,Research Director

Overview of the One in a Hundred Report

• Just over 1000 respondents

• Surveys and focus groups

• Living with autism, experiences of the UK health system, attitudes to science and research priorities (medical)

http://autistica.org.uk/document_downloads/Reports/Autistica-1-100-Report.PDF

1. Living with autism in the family

Three quarters of parents felt that having a child with autism had helped them learn about disability issues

94% of parents worried about their child’s future

72% of parents felt they were judged or misunderstood by others

2. Experiences of the UK health system

Three quarters of adults said there was nothing for them after they received a diagnosis

Parents reported a range of emotions around the time of diagnosis: relief, despair, anger, guilt.

Half of parents and adults reported a generally negative experience of interacting with their GP

75% of adults requested help with stress and anxiety

3. Attitudes to scientific research

Families see the importance of research Families are looking to engage more in the

research process There are areas of the health service, which

need significantly improving:◦ Early diagnosis and early intervention

Selecting research priorities:◦ Early diagnosis and early intervention◦ Adults and ageing◦ Mental health

Conclusions

Research funding of interventions and support for the period after diagnosis

Research programme at Newcastle University

Research programme at the Institute of Psychiatry, London

The Autistica Gateway:◦ ASD-UK◦ Redesigned website and science communications◦ Information resources

First resources will be for the period immediately after diagnosis

Priorities for Autistica

Thank you

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