Note: This post was published in December 2025 as part of a new web design but the work was completed in Summer 2025
Background:
Like so many of you, we want to see better support for autistic people across their entire lives. We want to see a stronger, more united community of autistic people and supporters, working together to drive change. It’s hard to stand up and be counted, we know that. Some people have been working tirelessly for years and are in danger of burnout. Some have demanding jobs that are difficult to maintain, and/or caring responsibilities or additional disabilities, all of which makes it difficult to find time and energy to do any more than we do already. We want to help with that, offering support to overcome the barriers.
To plan future work that will help autistic people and their supporters get involved in driving change, we needed to understand how people have already tried to do this, and what the barriers are to getting even more involved.
How this work empowered people to make more of a difference:
This piece of work was for autistic people and their supporters to share how they have tried to drive change and what they would like to do if they had support and resources.
By being involved in this work, we wanted to help panel members create the change they want to see. Understanding people’s experiences to help make sure autistic people, as well as parents and carers, are more involved in Government decisions about the big issues affecting their lives – to say what needs to change, let the world know about it, and to have more of a say in those decisions. We’re passionate about change and we know we can’t do it alone.
What did we ask people to do?
Our neurodiverse team designed and emailed a survey to UK members of the Community Advisory Panel (at that time 937 people) asking what they’re doing already, if they are interested in getting more involved, and what barriers they’ve come up against.
151 people responded to the survey. This included 124 autistic people, 59 parents/carers/supporters, and 36 people who work with autistic people or in the field of autism (these groups overlap).
How we used suggestions/responses:
You can read the results of this survey in much more detail via our blog.
In summary, we found that:
- The vast majority of people believe big changes to society are needed, and that Government needs to make changes, with an incredible 90% saying they’d like to be part of driving those changes.
- The people who responded to our survey are clearly doing a lot already. The most common activity was adding their name to petitions or letters to Government, followed by supporting organisations, getting involved in co-design or co-production, writing blogs and social media posts, and donating money to autism charities.
- Over 90% of people indicated they’d like to do more but something – or multiple things – are stopping them (e.g., ‘I can’t do it on my own’, ‘Don’t know what to do that would make a difference’, ‘I don’t have enough money’, ‘I don’t have enough time’, ‘I don’t know which issue to focus on’, and ‘I don’t have the skills or knowledge I need’). In fact, only 6% of people said they don’t want to do more than they do already.
4. Over half of people said they’d be interested in joining a group to learn about how people can come together, get organised, and drive change and nearly another 40% might be interested. Some of the suggestions for what would make people more likely to join a group like this are in the box to the right hand side →
Note: Some of these were conflicting and we will be mindful of this, offering flexibility.
5. We asked the almost impossible question, ‘If you could fix just one thing to make life better for autistic people, what would it be?’ Almost everybody was able to make a suggestion. The ideas suggested most often were around improving knowledge, understanding and awareness of autism, sometimes suggested in the form of ‘training’, across society and/or in specific groups such as health professionals.
More likely to join a group if:
- clear information, rules, and processes
- autistic led
- well organised
- non-judgmental
- open to disagreement/conflicting ideas
- flexible
- funding for key training
- decisive leadership
- boundaries respected
- inclusive of cooccurring conditions
- asynchronous input / thinking time
- reimbursed for time
- small group
- responsive to messages
- includes diversity (e.g. race, gender, sexuality, disability)
- informal
- not tokenistic
- includes one to one discussion
What’s next?
We are using the community views from this work to prioritise our next steps. However, the results remind us that the autism community has a range of priorities – there is not a single most important topic. The community will need to be supported to form multiple groups looking at different issues. We are currently seeking significant funding to allow us to develop a programme broad enough to enable lots of different approaches. We will continue to work with members of our Community Advisory Panel, asking for their help developing plans, and ultimately aiming to support community members to drive their own visions for change.
Want to get involved?
If you are not already a member of our Community Advisory Panel and want to be part of future work in this area, please sign up via this page.
