Note: This post was published in October 2025 as part of a new web design but the work was completed in spring 2025
Background:
This piece of work was responding to the House of Lords Autism Act Committee call for evidence. The committee wanted to hear from autistic people and their supporters on key issues, such as healthcare, education, and employment, to help the committee recommend what the Government should do next to improve support for autistic people.
This was a great opportunity because anybody could share their views with the committee. However, we also understood that the committee might be limited in how they analysed and interpreted what could be hundreds or even thousands of individual responses. We decided that the best way Autism Action could respond would be to gather thousands of views and present them in a simple, yet powerful way.
To do that, we designed a simple survey. This asked people about their experiences in several areas of life. The idea was that while the committee might get a lot of individual stories, we would be able to show just how many people were having those experiences. We also developed recommendations about what the Government should do, basing these on what our experience tells us would make the biggest difference to autistic people.
How this work empowered people to make a difference:
This piece of work was to help finalise the draft survey that was designed by our neurodiverse team.
By helping with this work, panel members were able to have their views included in the design of the survey. This ranged from language preferences to the key issues being explored in the survey.
This survey ultimately gathered the views of over 5,000 people, to help inform the House of Lords committee in their recommendations for Government that will benefit autistic people.
What did we ask people to do?
Members of our Community Advisory Panel were asked to review a draft survey. We needed to make sure we had time to review all the answers and still have time to change the survey and publish it, so we sent this to 200 people rather than our whole panel.
We asked people to complete the survey with genuine answers and to comment on the questions, explaining what could make them better and if there was anything particularly good or bad.
37 people reviewed our draft survey. This included 31 autistic people, 13 parents/supporters, and 14 people who work with autistic people or in the field of autism (these groups overlap).
How we used suggestions/responses:
- We changed the order of the recommendations so that the ones which clearly refer to the involvement of autistic people are at the start of the survey. This was in response to comments about the importance of autistic people being involved in decisions and this needing to be clear from the beginning of the survey.
- Throughout the survey, based on some suggestions, some of the questions were made clearer. For example, some people commented on all of the issues being important and that the wording implied some issues were more important than others. We therefore added ‘most’ in bold to emphasise all issues are important, but we were looking for the most important in each person’s opinion.
- Based on direct suggestions, we also added some new questions. For example, it was pointed out that some people might select ‘other’ for the country they live in, but it wasn’t clear if they should continue to complete the survey. To address this, we added a question asking if they have lived in England and if so when. This meant we could check to make sure they were able to respond about their experiences in England.
- Throughout the survey, based on direct suggestions, some of the answers have been changed to make them more relevant and/or clearer. For example, it was pointed out that when we asked if people were autistic the answer of ‘none of the above’ didn’t allow people to explain their answer. We therefore changed this answer to ‘other’ and included a text box so that people could explain their answer.
- The survey was changed to take into account previous answers, for example ensuring follow-up questions weren’t asked if they weren’t relevant.
- At the beginning of the survey we explained more clearly the order in which the questions would appear, and how people could let us know they would like to be contacted about their answers.
