You’re the expert, not me

Parents of children with autism, and autistic people, often share their frustration with the claims of so-called ‘experts’. I suppose I am one of these people – an ‘autism professional’ – who purports to have some kind of insight into autism.  But of course, I don’t have anything of the sort. I am not autistic, and no-one in my family is either.  I move in almost exclusively neurotypical circles and mostly come in to contact with the autism community in professional contexts.  Very often I am the researcher, with an intimidating title (Dr Fletcher-Watson is at best a mouthful, at worst sounds completely unapproachable) and plenty of jargon to flummox the people I’m talking with. This makes it incredibly hard to really engage in a two-way discussion on an equal footing.

So what DO I have to offer?  Well, I have good research training.  This gives me the chance to go beyond what we can say about one person’s experience, by combining information from lots of people to draw stronger and higher-impact conclusions. And through my career, I have a platform to share these findings with other academics and with the community via more direct routes, like this blog and on twitter.

This blog post is introducing a new, small, but important research project which is trying to put those two skills to good use, giving parents a way to share their experiences with others. The topic (surprise surprise) is the use of technology. Specifically, I’m focusing on how parents of autistic kids select hardware and software and use these to support their children in the home.  The definitions are very broad – children can be any age, and “using technology” could encompass watching YouTube clips, gaming on a Nintendo DS, or playing educational apps on a tablet.  I have designed the survey specifically for parents, so the assumption is that their child’s age or ability level means that the parents are making these sorts of decisions (purchasing software, guiding its use) on behalf of their children.  We hope to follow up with another identical project which will instead look at how people with autism select and use technology for themselves and we may also be able to run similar projects thinking about technology use in the classroom and among practitioners.

The survey is being circulated internationally and so far we have received responses from the UK, USA, Canada, Denmark, Spain, New Zealand, Australia, Israel, Ireland and Germany. It is currently only available in English but we’re working with partners to produce a Spanish-language and a Hebrew-language version as well.  The survey will also be accompanied by a small set of interviews with UK parents to think about some of the issues in more depth. The goal is to produce, in partnership with the National Autistic Society, a short piece of guidance for parents who are new, either to technology or to autism. The guidance will be available online for free download internationally. Respondents can sign up to receive a copy of the document by email, when it is done.

Every parent who is currently a technology user will have their own ideas of what works best.  They will have made mistakes – buying expensive kit that didn’t work, choosing a phone case which broke easily, or forgetting to adjust the settings so their child couldn’t make endless in-app purchases!  By accessing these experiences, we aim to distil this collective wisdom into some guidelines which will help parents in the future avoid these pitfalls. If you’re a parent or guardian of an autistic child please consider filling in our online survey here.  It takes about 15 minutes and we hope the results will be of value to the whole community.