Listening to Autistic Voices

Better services start with listening. We want autistic people to have a meaningful voice in how our support develops, helping us understand what works, what could be better and what our communities need next.

Autism Anglia was founded over 50 years ago by parents of autistic children who came together because the support they needed simply did not exist.

That commitment to listening to lived experience remains at the heart of our charity today. We believe autistic people and families are experts in their own lives and should have a meaningful role in shaping the services they use and the decisions that affect them.

We are committed to moving beyond consultation and towards genuine co-production, where autistic people and those with lived experience help influence, design, develop and improve the work we do.

Our Commitment

At Autism Anglia, we believe autistic people and those with lived experience should not simply be consulted about services that affect them. They should be active partners in shaping them.

We are committed to listening, learning and working together to create services that are responsive, inclusive and genuinely informed by lived experience.

What do we mean by lived experience?

For us, lived experience includes:

Autistic people

Parents, carers and family members of autistic people

People accessing autism support and services

People navigating education, healthcare, employment, social care and community services

Their experiences provide valuable expertise that complements professional knowledge and helps us better understand what people need from our services.

How autistic people and families shape our organisation

We seek to involve people with lived experience at every level of Autism Anglia.

People with lived experience influence our strategic direction and decision making.

At least 50% of our Board of Trustees are parents or family members of autistic people who use our services.

Lived experience informs our governance, strategic priorities and organisational development.

Trustees hold us accountable and help ensure that the voices of autistic people and families remain central to our work.

We employ staff and work with volunteers who bring personal experience of autism as autistic people, parents, carers and family members. Currently around 30% of our staff have lived experience of autism.

We are proud to be members of autism strategy partnerships across Essex, Suffolk and Norfolk, helping shape services and ensure that autistic voices are reflected in local planning and decision-making.

Designing & improving services

We involve autistic people and families in:

Identifying unmet needs

Designing new services and projects

Developing information and resources

Reviewing and improving existing services

Evaluating outcomes and quality

This helps ensure our services are relevant, accessible and focused on what matters most to people using them.

Fair Recognition

We recognise the time, expertise and emotional investment involved in sharing lived experience and, where appropriate, reimburse expenses and offer recognition for participation.