Co-production

Co-production

Autistic people, parents and carers are equal 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 parent carer panel. All resources produced by the programme have been written by autistic people or produced in consultation with insight from autistic individuals, particularly resources that are targeted at giving a better understanding of autism.  

Autistic people, parents and carers have a leading role in steering and shaping what is required in terms of content and which formats are most accessible. These individuals guide 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 Parent Carer Panel.   
  • Content writing: our authors are autistic or people with lived experience. 

Our leadership groups:  

  • 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.  
  • Parent Carer Panel: the Panel is a group of autistic people, parents and carers who are involved in writing and shaping content to share their perspectives and experiences. 
  • 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.

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 and a Parent Carer Panel, which includes a number of 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. The programme includes a Parent Carer Panel. This is a group of parents and carers from diverse backgrounds, who are parents and carers of autistic people of different ages and with different needs. 

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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