Data
The basic facts and figures
When tackling the challenges faced by autistic people, the very first thing we need to know is ‘how big is this problem?’ High quality information, data and statistics allow us to tell partner organisations, politicians, policymakers and funders exactly how many people are experiencing difficulties, so we can convince them to take action.
Without this data, we have to rely on anecdotal evidence. It’s vital to hear from people with lived experience, but it’s essential that we have the evidence that lots of people share the same views.
And yet, in every area, from early years and education to inclusion in the workplace, health inequalities and preventable deaths, a lack of basic data holds us back. Government figures rarely include autism as a category. Sometimes they include the broader concept of neurodiversity but that includes many different people, not just those who are autistic. In the NHS, lots of data is missing, or stored in paper files, or held in different computer systems that can’t interact with each other.
We’re committed to finding the information that autistic people deserve
Until the right data is made available, the issues that affect autistic people will continue without change. Even if action is taken to improve life for autistic people, we will have no way to show it has made a difference.
That’s why we’re focusing on data throughout our work, seeking ways to find it even when it’s hidden. This will sometimes mean making Freedom of Information requests, or making sense of data that’s overwhelming, like some of the NHS online dashboards.
Our approaches to the data problem
1. Official Government data
Official Government data. We’re working to ensure that all Government data properly includes information about autistic people.
2. Hidden data
We’re developing our strategy for identifying, publishing, and using hidden data, such as anonymous figures held by NHS Trusts, to drive change. We will provide more information as it becomes available. If you have ideas about data that could be accessed via Freedom of Information Requests, please contact us.
3. Missing data
Where there are questions that need answering and the information simply isn’t available anywhere, we will commission work to find the answers. We will choose the approach to match the need, which will sometimes mean academic research and sometimes faster methods.
4. Clear, meaningful data
Once we have the information we need, we want to make sure everybody can find and understand it. We’re working toward publishing clear, accessible information about the topics that matter to autistic people. We plan to keep those updated as a reference source for the general public, journalists and other interested parties. If you are interested in contributing to this work, please join our Community Advisory Panel.
