Involvement in the Autism Strategy
I found out about the opportunity to contribute to the Strategy through the Parent Forum linked to my child’s treatment at SlaM. Although I am an autistic adult, I joined as a parent of an autistic child who had received treatment through the Trust.
I wasn’t sure what to expect; whether I would find myself out of my depth amidst project management tools and terminology, embarrassing myself by joining something I couldn’t actually contribute to.
What I found was the relief of virtually entering a room full of people who were diverse, but who connected to a shared diagnosis or experience of autism. This was the service users and carers group, and it made the step to joining work streams so much easier – familiar faces, a collective experience, and an opportunity to begin to know each other. This levelled the field for me – practitioners often know each other and can find a familiar face in a room, how brilliant that we would be able to as well.
Some of the challenges have been choosing which work streams to join – I wanted to make a difference everywhere initially. Getting used to working in a way which includes peer support and sharing our state of mind has been difficult although rewarding – it is often a ‘nice to have’ at work, and not built into the everyday. I’ve learned to be guided not ruled by the agenda.
It has been really important that we all have equal access to documents, meeting invitations, and information – initially this was tricky and felt like a second tier of involvement. I appreciate that there was a lot of effort put into resolving this in a way that users of services and carers felt worked for them.
I catch myself looking forward to the monthly meetings – the service user and carer group gives to me as much as I contribute. Sharing the chairing of a work stream was more tempting than I thought, and supported by pre-meets to make sure I was comfortable. There are sometimes miscommunications or disagreements, but the sense of being willing to work together from staff and users of services is really clear. It’s almost palpable across the internet and reflected in the clarifications and suggestions in chat comments.
I don’t know what we will come up with – an end result feels quite far off right now. I do want to stick around to find out though, and to keep meeting up and experiencing this way of working.
About the author
Mhairi Tynan is the parent of four teenagers/young adults and joined the SLaM Autism Strategy Service Users and Carers Group in 2022. Her family used the SLaM OCD service for young people. She lives and works in the South East, and uses her own experience as an autistic adult and as a carer to support improvements to services in her local area.
