Content warning: This blog mentions suicide
Earlier this month, we took a huge step in influencing the way the UK gathers basic information about autistic people, across all aspects of their lives. A round table discussion hosted by the Office for National Statistics (ONS) provided an opportunity to stop out-of-date language preventing autistic people being counted.
Why is UK data about autistic people so limited?
Throughout my three years at Autism Action, we’ve come up against a lack of data about the challenges facing autistic people over and over again. It’s impossible to confidently say how many autistic people there are in the country, how many are employed, how many need support in school, how many are accessing mental health services, how many are waiting for an autism assessment, how many are dying preventable, premature deaths, and even – despite being included in the Government’s national suicide prevention strategy – how many autistic people are dying by suicide every year. Too often, we have to make a best estimate, which we strongly suspect to be an underestimate.
Without high quality information, it’s incredibly difficult for us to make a case to Government, health and social care commissioners, and even teachers, health practitioners and other individuals who may be unaware of the needs of this group. Worse than that, this lack of data means that the Government itself can’t effectively review or monitor how these vital issues affect autistic people.
It’s partly because – nationally – we’re asking the wrong questions
As I searched high and low for the information we needed, I kept finding the same questions cropping up, for example in surveys like Sport England’s Active Lives:
- Do you have any physical or mental health conditions or illnesses lasting or expected to last for 12 months or more?
- Does your condition or illness reduce your ability to carry out day-to-day activities?
- For how long has your ability to carry out day-to-day activities been reduced?
Whenever I saw those questions, my heart sank. Firstly, autism is not a physical health condition, a mental health condition, nor an illness. Neither is learning disability, for that matter. Secondly, from speaking to lots of autistic people, I know that many would answer no to that first question, for exactly those reasons. That means they likely wouldn’t be asked any follow up questions and would therefore not be counted in whatever that survey reports. Worse, most organisations using these questions won’t be aware of that issue, so they’ll think they are collecting information about autistic people, when any numbers they generate can only be an underestimate of the true situation.
Next, even if autistic people decide to say yes to that first question, many will have difficulty answering whether autism ‘reduces their ability to carry out day-to-day activities’ and, if yes, how long that has been the case. From conversations with autistic people, I’d expect responses like ‘it depends on the day’, ‘it depends whether I’m supported or not’, ‘it depends how stressed I am’, as well as about how their ability to carry out daily activities has been reduced for years across their lifespan, but not since support was put in place, and even as fundamental as ‘which day-to-day activities, because I can do some but not others.’
The source of the problem: a system with the best of intentions
We soon realised that the question wording above was coming from the Office for National Statistics (ONS) via something called ‘harmonised standards’. The idea of those standards is to provide wording and guidance so that data collected by different organisations can be compared, like for like. If everybody in the country uses the same wording, that consistency can make the data they collect more useful.
That makes a lot of sense. However, as I said in the round table session, ‘with great power, comes great responsibility’. If we are going to ask everyone to use the same wording, we must make sure that the wording actually works. Unfortunately, in relation to autism, this is not currently the case, as I described above.
Is autism a disability?
By law, autism is a disability under the Equality Act 2010. The protections of that law are vital for ensuring that autistic people are not discriminated against.
Nonetheless, we know this is not how many autistic people see or talk about themselves. We respect the right of individuals to choose the words they use to describe themselves.
How we’re working to drive change
Happily, shortly after we first reached out to the ONS, they announced plans to review the harmonised standards around disability. We immediately contacted them to point out the ways that the wording is currently excluding autistic people, and we were encouraged to hear that this was already something the team was thinking about. We have been included in discussions since then and were grateful to be invited to the round table event with representatives of other groups impacted by this work, who I won’t list due to the agreements made around confidentiality.
In the session, I was able to make key points based on what many autistic people have told us over time:
- The existing harmonised standards are having a severe detrimental effect on data about autistic people, and at its worst this impacts our ability to tackle issues like high suicide rates.
- The ways autism impacts people’s lives can vary hugely, depending on things like stress levels and support, so questions need to capture that, or at least be worded in ways that autistic people can meaningfully answer.
- Data needs to pick up when autistic people also have other conditions, including other neurodivergent conditions, physical and mental health conditions, and other disabilities, including learning disability.
- Different autistic people will be using different language and will have different ideas about disability, such as the social, medical and biopsychosocial models. If the questions intend to include everyone, regardless of the way they think about themselves, the language used must work for everyone.
- With over 200,000 people waiting for an autism assessment in England alone, it will be crucial to consider not only those who’ve been able to access an autism diagnosis but also those who haven’t. Autistic people are already autistic and have support needs even before they get a piece of paper confirming their diagnosis.
- We need the questions to be clear and simple, but we also need enough detail to make the data useful.
- While autism is a form of neurodiversity, and this may be many people’s preferred terminology, for the purposes of national data it’s vital that we can identify autism separately. Otherwise, the needs of those with all neurodivergent conditions, which can be very different, will be lumped in together.
I’d like to extend my thanks to the ONS team for being so open to these issues and for all the excellent work on this to date. It’s reassuring to see such care taken to consult widely and to be open to so many views.
How you can get involved
Finally, I’ve left this until last because the link will take you away from what I’m saying, but it’s the most important point of all: it’s vital to ask the people who’ll be answering the new questions – autistic people, in our case – what they think and whether the questions actually make sense in practice. Happily, I was assured there will be lots of work with people with lived experience, including testing the questions, and that organisations like ours will be able to include our communities.
The ONS team told us “We think it’s really important that we put the respondent at the centre of the process when it comes to the design of surveys – that’s why the harmonisation team take a respondent-centred approach to reviewing and updating all of our standards. We hope that our review of the disability and impairment harmonised standards will allow for greater inclusion of underrepresented groups within survey data.”
If you want to hear about how to get involved when the time’s right, please sign up to our Community Advisory Panel. This single piece of work could make an enormous and long-lasting difference to the quality of UK data about autistic people’s lives. This, in turn, will help drive access to support.
I think you’ll agree that this really is important. We’d love as many of you as possible to get involved.
Are you struggling?
If you’re struggling, particularly if you are experiencing suicidal thoughts or feelings, please reach out for help. We know that support options are currently limited, which is why we’re researching the best opportunities to improve or create services that will make a difference. You can access some ideas for support here.
