On participatory research and building the evidence base

On Friday afternoon (in retrospect a foolish decision – never post anything controversial on twitter just before the weekend) I posted a series of tweets sharing this new project page. The project is a multi-site fully-powered clinical trial of a new manualised intervention for parents of autistic children. Let’s break that down a bit. Multi-site…

Recruitment Kick-Off!

Our amendments to the ethics approval have been considered and signed off, the assessment room is ready to go, I’ve done a practice run with my own daughter and a friend’s son, and the app is nigh on finished. So there’s nothing in the way anymore, and recruitment for our clinical trial has officially begun.  To mark the momentous occasion, the Get Involved page has changed, to invite people to take part in the trial, rather than in the game development process. It is all extremely exciting and a little bit scary!

If you’re reading this, and you have or know a young child with autism, aged under 6 years old, and based somewhere in or around Edinburgh, please do consider taking part in our project. The first step is to give me a call or drop me a line  – details in the panel on the right. I can send you plenty more info and there is no rush to make a decision, but I would love to hear from you.  If you’re nowhere near Edinburgh I’m afraid this study won’t be right for you – it involves coming in to the city for a couple of assessments, and there’s also a home visit from me. But I would definitely encourage any parents of children with ASD, or any adults with ASD, to consider contacting Universities near to them about the possibility of being involved in research.  Individually, a single research study won’t change the world, but collectively a great deal of what we know about autism spectrum disorders has come from the huge quantity of academic research on the topic. This research informs diagnosis, treatment, education, financial support, and public opinion – and it wouldn’t be possible without the participation of people with autism and their families.

Maybe you feel academics are too hidden away and our work has limited relevance to your real life concerns? All the more reason to get stuck in.  Any academic worth their salt will be interested to hear about your experiences (whether you’re a parent, sibling, teacher, or person with an ASD diagnosis) and what you say will inform their work. Obviously we have to be realistic – a neuroscientist who is interested in brain development in ASD isn’t going to suddenly switch research topics because you are telling him that your daughter with autism is having trouble potty training. But they might look into having better changing facilities for participants in their research lab, and they will also benefit from a more rounded understanding of the everyday experience of the group they are trying to help.