Community engagement included working with several groups and organisations who support autistic people and people with lived experience in order to co-produce the surveys together. This involved:
- 8 members of the Parent Carer Forum
- 12 year 5 and 6 children from 2 primary schools, 2 SENCOs and 1 headteacher
- 12 young people and 2 project workers from the Wayz SEND youth club
- 3 parent and carers from Larchwood
- 15 autistic adults plus 2 workers from Project 73 (a social group for autistic adults)
- 10 autistic adults from the autism sub-group of the Learning and Disability Partnership Board
- 6 autistic adults supported by Breakthrough employment
We worked with autistic people to create 4 different surveys. Each survey focused on a different stage of life, like childhood, adulthood, or older age. Some issues are shared across all stages, but each group also has its own unique needs.
The surveys were co-produced and sent to different groups of autistic people:
- parent or carers of autistic children and young people
- autistic adults
- autistic children (primary school age)
- autistic young people (secondary school and college age)
We asked questions around education, health, housing, living and working in Bracknell Forest.
There were 141 validated survey responses:
- the youngest respondent was 5 years old
- the oldest was 70
- 30% of the responses came from parent carers - this was the highest response rate
- 20% of response came from autistic adults - this was the lowest response rate
Overall:
- there were more male than female responses, although more adult autistic females responded to the survey than adult autistic males
- 77% said they were male
- 57% were female
- 5 identified as transgender, other or didn’t want to say
There were some common challenges experienced by autistic people, parents and carers that emerged across all groups such as noise and overstimulating environments. This can relate to places where people live, work, shop, go to school, employment, health provision or in the criminal justice service. Not having access to calm and safe (low stimuli) environments where people could self-regulate was an issue amongst all age groups. Across all age ranges people identified the need for structure, routine and continuity in their day to day lives.
Lack of understanding around needs and behaviours of autistic people also appeared as a theme across all age groups. Whether this was in relation to health professionals, employers, teachers (specifically in the case of children at school), or from other children.
Communication was a challenge across all age groups. Autistic people felt they were not able to communicate effectively with other people. They found it difficult to make themselves understood. Children had difficulty in communicating pain symptoms for example, whether that was to a medical professional or in school. Likewise, not being communicated to in a clear way (for example, through verbal and written instructions, chunked information, by email). Children struggled to understand what was being asked of them in school. Communication was often one way. This resulted in getting told off for not doing something, when the reason they haven't done something is because they didn't understand what was being asked.
Reasonable adjustments aren’t consistently available in workplaces (for example, homeworking, rest periods, low stimuli areas, noise cancelling headphones). In some schools, fidget toys which help autistic children to self-regulate are not allowed in the classroom. Many children with sensory issues struggle to wear school uniform which they find uncomfortable.