Help us stop autistic people being invisible in important surveys

Announcing our brand-new survey of autistic people’s health and wellbeing!

What is the problem?

Since 2020, the UK government has considered effects on mental health and wellbeing in its decision-making about spending and investment. The wellbeing information that it uses to do this is collected through official surveys like the Annual Population Survey, the UK Household Longitudinal Study, and the Active Lives Survey. Other organisations, such as the NHS, funders and charities, also use these data to inform decisions.

However, official surveys often fail to ask whether respondents are autistic or not. This means that the results cannot comment on how autistic people’s needs and experiences might be different. As a result, the government and other key organisations do not have the information they need to make sure that they are taking decisions that work for the wellbeing of autistic people.

What is our solution?

We think the first step in changing this situation is to collect the missing data about autistic people. We have collaborated with members of our Community Advisory Panel and State of Life to design a survey to do just that, asking autistic people in the UK to answer key questions from those official surveys. The data that the survey collects can then be compared with the official data to identify areas where wellbeing-informed decisions need to be tailored specifically to the needs of the autistic community.

We believe that the results of this survey will make it easier for the government and other organisations to understand autistic people’s needs and ultimately to provide better support and services for autistic people. In fact, we hope that by making this information visible, we will also make the experiences and needs of autistic people more difficult to ignore.

How can you help?

If you are autistic (with or without a formal diagnosis), aged 16 years or older, and living in the UK, you can help by completing the survey at The survey is fully anonymous and should take 10-20 minutes of your time.

You can also help by sharing the link to the survey with other autistic people. The more autistic people complete the survey, the more powerful the results will be.


When we have analysed the data, we will also post the anonymous results on our website, and will ensure that local and national government and key decision-makers in the NHS and beyond are notified.

To hear about the results by email, sign up to the ACE newsletter.

If you have questions about this survey or any of our work, contact us at