Co-production

Co-production

Autistic people, parents and carers are partners collaborating in all parts of the programme, sharing their own personal perspectives and experiences. 

Autism Central is designed to help families learn more about autism and understand how to navigate support. As Autism Central is a peer education programme, offering parent to parent support, parents and carers are key in telling us what they need through our evaluation surveys. All resources produced by the programme have been written and/or reviewed by autistic people, particularly resources that are targeted at giving a better understanding of autism.  

Autistic people and their parents and carers have a leading role in steering and shaping what is required in terms of content and which formats are most accessible. Their feedback guides the programme team to better understand the needs of families and identify gaps and priorities for content development.  

Their insight, knowledge and lived experience help us create the best possible resources and outcomes for autistic people, families, carers, as well as Personal Assistants and peer educators working to deliver the programme to other families.  

Autistic people, parents and carers lead the programme, from start-up to content development: 

  • Stakeholder engagement exercise: in-depth focus groups with parents identified key topics for the programme to focus on. 
  • Content development process: key topic areas are clearly defined from lived experience perspectives, input to this is given through the Expert Reference Group and feedback from parent carer evaluations and regional delivery hubs.   
  • Content writing: our authors are autistic, parent carers or other experts in their field. 

Our team:  

  • Expert Reference Group: a group of subject matter experts and people with lived experience who shape detailed plans, and contribute their knowledge, insight and support the creation of the content and resources.  
  • Governance Steering Group: representatives of the programme partners, a group of nine not-for-profit organisations. We believe that working in partnership is a strength which brings together a diverse range of viewpoints, experience and expertise. This group includes many who are parents of autistic people and/or are autistic themselves.
  • Programme team: the programme team includes many who have lived experience as parents of autistic people and/or are autistic themselves.
  • Regional hubs: our regional hubs offer guidance to families, carers and personal assistants of autistic people. Our hubs bring together a diverse range of viewpoints, experience and expertise. Many of the hubs include teams with people who have lived experience as parents of autistic people and/or are autistic themselves.
  • Peer educators: are trained to provide support to parents and carers via events and one-to ones run by our hubs. Peer educators are primarily family members/carers of autistic people (this includes parents/carers who are autistic themselves). 

FAQs

Who is the programme for?

The programme is for parents, carers and personal assistants of autistic children, young people and adults. Our resources may also be useful for autistic people who are not parents, carers or personal assistants and are advocating for themselves. While aimed at parents and carers, the programme can also support an autistic person’s wider family and caring network.

How have you involved autistic people?

Everything we do is informed by or co-produced with autistic people, parents and carers. We have an Expert Reference Group of autistic members, our programme team includes a number of parents and autistic members. These groups help to support the strategic planning of materials for the programme. We also work with autistic people to write and produce content to ensure that the voices of autistic people and their families are at the heart of everything we do.

How have you involved parents and carers?

Everything we do is informed by or co-produced with autistic people, parents and carers. At the very beginning of the programme, we carried out stakeholder research with parents and carers to find out what their priorities were and how a peer education programme could best support them. Parents and carers from diverse backgrounds, who are parents and carers of autistic people of different ages and with different needs are represented in the Expert Reference Group, Governance Steering Group, regional hubs and the programme team.

Are peer educators autistic?

Autism Central has been commissioned by NHS England to offer peer to peer support for families and carers of autistic people. As such, the peer educator roles are primarily filled by family members/carers of autistic people (this includes parents/carers who are autistic themselves) to enable parent to parent insight. However, autistic people who are not parent/carers who have come forward expressing an interest in providing peer support can also apply, particularly as this programme is spanning all ages, for families of adults as well as children. You can read more about peer educators, and we would recommend you reach out to your nearest hub to see what opportunities there are in your area.

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