It was decided from the beginning that bringing in an independent person with autistic lived experience from outside the area would be more effective and potentially attract a wider group of local autistic people as they would have no preconceptions about local communities or services. The external autistic lead could also advise on how best to connect and communicate with local autistic people and which formats to use, or reasonable adjustments to make so that people are better able to take part.
An autistic friendly e-flyer was developed and distributed to known local groups, to wider online groups of autistic people and families, across statutory services and to the local media. A series of online discussion sessions using Zoom were advertised on different days and at different times so that those who wished to join could choose one most appropriate. Sessions were delivered in an autism-friendly manner with people choosing whether to have their camera’s on, with an option to type responses rather than talk, breaks built in for processing time, or having an advocate to relay their perspective on their behalf, to name but a few examples. One to one phone sessions were offered to anyone who either found talking in groups difficult or who wanted to relay very personal stories. The Autism Officer spent time talking to potential participants about the process, making expectations clear, answering questions, and reducing potential anxiety. They also asked if any reasonable adjustments were required by potential participants to enable them to take part. The key discussion questions were sent out in advance to allow for processing time. Sessions were led by the autistic lead and supported by the council’s Autism Officer.
The autistic lead was employed as a consultant and was responsible for collating the information from the participants and presenting it back to the council as an independent report, with recommendations for improvements to the post diagnostic support that local people received and on how best to improve local co-production structures. The original participants received the collated information and were given opportunities to correct or add information before the report was submitted to the council.
The Autism Officer continues to lead this work across the local health and social care system with projects which were already in development or were set up as a result of the engagement with autistic people. Examples include improving the provision of information and advice for autistic people and the extension of the Autism Partnership Board membership to include the Voluntary and Charity Sector, to be more representative of the local autistic community, and work on improvements in the support given to experts by experience.