Consultation on the East Sussex Autism Action Plan for all ages

Results updated 2 Apr 2025

From April to June 2024 we ran a ten-week consultation about the development and creation in East Sussex of an Autism Action Plan for all ages. The consultation gathered the views of Autistic residents, parents and unpaid carers, and others with an interest.

As well as the survey, the action plan was informed by three focus groups and four stakeholder workshops with members of the public, providers, and professionals.

The overall aim of the plan was to shape and improve local services, promote the voice of the Autistic community and highlight priority areas of key importance for Autistic people.

Who took part in the survey

In all, 324 responses were received to the consultation, with a further 2 replying by email. Respondents were most likely to be female (65%), White British (47%) and aged 35-54 (75%). Heterosexual respondents accounted for 61%, and just under half (48%) had no religion.

Nearly half (47%) have a health condition that is expected to last 12 or more months. Of those who said their condition affects their ability to carry out day-to-day activities, 56% mentioned a mental health condition, and 62% a neurodivergent condition.

Respondents were most likely to live in the Wealden district (21%), with the remainder split evenly across the four other districts and boroughs.

Main survey findings

• Most respondents find it hard to access activities, support and services across a range of topics.
• There is poor understanding of Autism from others, including professionals and the public, and how it affects people’s lives.
• The top things to change to improve the lives and wellbeing of Autistic people are: schools and colleges, attitudes to Autism, and having more support.
• Very few people find it easy to access schools and colleges in East Sussex.
• Autistic people say it is hard to find and keep a job, with employers’ lack of understanding being the top barrier.
• There is a lack of inclusive, convenient and suitable options for social and community activity for Autistic people.
• Where respondents don’t feel safe, some of the main causes are anti-social behaviour and lack of safe spaces.
• Access to health and care services is hard for most respondents, with mental health being the hardest to access.
• Most people have to wait a long time for their diagnosis, sometimes years if they don’t pay privately.
• Respondents noted a lack of support following diagnosis.
• Many Autistic people rely on private transport, as public transport is unreliable and makes for a difficult sensory experience.

Next steps

Based on all feedback received, the East Sussex All-Age Autism Action Plan launched during Autism Acceptance Week in April 2025. It has been co-produced with people with lived experience, alongside representatives from East Sussex County Council, the NHS, and independent sector providers. You can view the plan on the East Sussex County Council website.

The three-year plan focuses on improving three areas, within which we have identified 26 separate actions:

• improving the health and wellbeing of autistic people (13 actions);
• improving autistic children and young people’s access to education, and supporting positive transitions into adulthood (6 actions); and
• supporting autistic people into employment and helping them to sustain their employment (7 actions).

Thank you to everyone who took the time to share your experiences in the survey. What you told us has been key in developing the action plan.

To help us evaluate what difference the action plan makes to people’s experiences, we will repeat the consultation at the end of the three years of the plan’s delivery. This will include evaluating the following outcomes:

Health and Wellbeing

1. I know how to find out about inclusive social activities in my local community
2. I am able to access inclusive wellbeing and leisure activities
3. I am able to connect with the Autistic community in my preferred way
4. I can access a timely assessment of my neurodevelopmental needs
5. I feel empowered to ask for reasonable adjustments to support my needs
6. I am able to access health care, delivered by the right people, at the right time
7. I am able to access the care and support services I need
8. If I have an unpaid carer or family member, they know how they can access support for themselves
9. Health and care professionals have the knowledge and skills to support me as an Autistic person

Education

1. I can access an education setting that meets the needs of Autistic pupils
2. I feel empowered to ask for reasonable adjustments to support my needs
3. I am supported to develop and achieve my goals
4. School and college staff have the knowledge and skills to support me as an Autistic person

Employment

1. I have access to clear information and advice about employment support available
2. I feel empowered to ask for reasonable adjustments to support my needs
3. I feel able to find and keep a job
4. I know how to access support if I am looking to change jobs or develop my career

Links:

• Autism All Age Action Plan