Expanding our efforts to stop autistic people being invisible in important surveys

In June, we announced the launch of our UK-wide survey of autistic people’s health and wellbeing. We have received hundreds of responses since then, from autistic adults around the country. These responses will help fill the gaps in official UK data that make it difficult for the government and other service providers to understand how autistic people’s needs and experiences might differ from those of the general population.

We are now launching two new surveys: one for a parents of autistic children and one for carers of autistic adults who would not be able to complete the existing version even with support.

Why do we need these surveys?

The UK government takes mental health and wellbeing into account when making decisions about spending and investment. It uses data about these topics from official surveys like the Annual Population Survey. Other organisations, like the NHS, also use this data to inform their decisions. In most cases, these official surveys do not ask whether respondents are autistic or not. This means that the organisations who use data from these surveys cannot make sure that they are taking decisions that work for autistic people’s wellbeing.

Some of the official surveys for adults, like the Active Lives Survey, also have versions for children. Children’s wellbeing is measured differently from adult’s wellbeing. For example, the adult surveys don’t ask how the respondent feels about going to school. This means that the children’s surveys include different questions from the adult surveys, but they have the same problem – they don’t ask whether the children are autistic or not.

Furthermore, none of the official surveys collect data about the wellbeing of adults who are not able to answer a survey themselves – for example, because of an intellectual disability. This means that this group of people is entirely unrepresented in the official data.

What is our solution?

The survey we launched in June is designed to collect the missing data directly from autistic adults. We collaborated with members of our Community Advisory Panel and with State of Life to design a survey which asks autistic adults some key questions from the official surveys. This will let us compare autistic people’s answers with the official data, so that we can identify areas where decisions about services and spending need to take autistic people’s needs specifically into account.

Our two new surveys are designed to collect the missing data from the parents of autistic children and from the carers of autistic adults who are not able to complete their own surveys. With the help of our Advisory Panel and State of Life, we have adapted the original survey so that the questions are suitable for parents and carers to answer about the autistic children and adults they care for.

The goal of this project is to make it easier for the government and other organisations to understand autistic people’s needs and to provide better support and services for autistic people, as well as to make autistic people’s needs harder to ignore. We think that, by expanding the survey to represent even more autistic people, we will be better able to achieve these goals.

How can you help?

If you live in the UK and any of the following apply to you:

  • You are an autistic adult (with or without a formal diagnosis), aged 16 years or older, and living in the UK;
  • You are the parent, carer, or guardian of an autistic child aged 15 years or younger;
  • You care for an autistic adult who is unable to complete their own survey, even with your support;

You can help by completing the version of the survey that applies to you at bit.ly/AutismBenchmark. The surveys are all anonymous and should take 10-20 minutes of your time.

You can also help by sharing the link to the survey with other eligible people. The more 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 info@autismcentreofexcellence.org.