Consultant Emily Niner joined Traverse in January 2022, having spent four and a half years leading the participation programme at Ambitious about Autism.
Committed to reducing inequalities in health, education and justice, especially for autistic people and people with learning disabilities, Emily is passionate about building relationships with people, supporting them to have their say about the issues and decisions that matter to them.
Here, Emily shares her key advice on engaging with young autistic people.
What is autism?
Put simply, autism is a neurodevelopmental condition that affects the way someone perceives and interacts with the world. Autistic people might express themselves differently to non-autistic people, but a crucial point to make is that different is not less. Equally, contrary to popular misleading belief, someone cannot be ‘a little bit autistic’. Someone is either autistic or is not autistic.
At Traverse we believe that research is best when we do it with people, not when we do it to people and I am particularly passionate about genuine and meaningful engagement with autistic young people
A lot of the basic advice for engaging with autistic people is just as applicable to working with non-autistic people. For example: making sure role descriptions are clear and that participants know as much about what is going to happen as possible, communicating clearly and not using jargon, making room for different forms of feedback and participation, and having clear ways of working.
However, there are some principles which I feel are particularly important when working with young autistic people.
1. Start with people
First and foremost, I would encourage anyone seeking to involve an autistic person or group of people in their research to remind themselves that every autistic person is different. While an autistic person may have differences in how they perceive and interact with their environment and those around them, it’s important to remember that each autistic person will do so in their own way.
So, the first message is that you should treat every participant as an individual. This means that within a group you could have conflicting needs and will need to find a way to make sure that everyone is supported. Of course, adjusting how you work to fit an individual’s needs is good for everyone, whether autistic or not, and so it’s always worth getting to know people on a personal level.
Personally, I would always recommend having an induction with young people before they join projects. This can cover the ways they communicate, the topics they feel comfortable discussing, reasonable adjustments and any signs you may need to look out for to warn you that something isn’t right. Not only does this provide support in running sessions in an agile manner, but it also helps participants feel safe and that they can be their whole self, knowing you are able to spot signs of them becoming uncomfortable or overwhelmed and know how best to support them
2. Lived experience isn’t static
This leads on nicely to my next point, which is that life and lived experience is constantly changing. It is a crucial factor to be considered, as it can affect someone’s capabilities from day-to-day and even hour-to-hour. For this reason, your engagement needs to be responsive and well-thought out.
For example, think about the different communities which people are part of. Is it the right time to engage? For young people, this could be thinking about the time of day, the time in the school year or any major events on the horizon, such as religious festivals.
Increasingly, I find that what’s going on in the news or in current affairs can also have a big impact. The changing landscape around us can affect people’s ability – and desire – to be involved and it’s down to you to keep abreast of this.
Also, it can be all too easy to get wedded to a carefully curated session plan and feel frustration if it doesn’t quite go as we’d hoped. However, it is our responsibility as engagement practitioners to be responsive and humble, to listen and take feedback on board – no matter how hard we’ve worked on something beforehand! This can be as simple as making sure you have several means of communication available so that, for example, as someone begins to become overloaded, they can move to typing, writing or using communication cards instead of speaking.
3. Protect people’s lived experience
Along with getting to know people properly to help them feel safe during research and engagement sessions, it’s also really important that we understand the value of their lived experience and commit to protecting it.
I’ve had experiences before where slightly less scrupulous organisations have approached me to ‘mine’ the lived experience of the young autistic people I worked with. I believe they do this so they can legitimise their work and say they’ve engaged with various groups, but they don’t actually place any real value on the lived experience that they’re hearing. In our role as engagement practitioners, it is our job is to protect our participants from this kind of exploitation and ensure they know that they, and their experiences, are safe with us.
If you’d like to find out more about how Traverse could support your projects, please get in touch with us at firstname.lastname@example.org