A while back I favourited a link on Twitter calling for researchers to describe their work using only the 100 most common English words, using this clever site. Today I’ve done just that, translating the home page of this site into accessible language. It was really hard – there’s no “autism” of course, no “research“, and certainly no “interdisciplinarity“. But also other words I had assumed would be available – ‘teach‘, ‘choice‘, ‘country’, ‘born‘ and sadly ‘science‘ aren’t allowed. In some areas I think this results in some quite entertaining language – for example, describing premature infants as “babies who arrive early“. In others, the result is less cute.
To describe people with autism, I tried a number of options but special needs, extra needs, difficulties, challenges, and anything with the word ‘social‘ were excluded too. I ended up talking about ‘problems‘. What was most striking about the process though, was how impossible I found it to define this group in more positive terms. I suppose in a way this makes sense – my research is applied, which means identifying a problem and finding a way to solve it. Obviously in solving a problem it makes sense to harness strengths which is one reason I am interested in technology-based solutions. But ultimately, my interest in autism stems from a desire to aid in areas of difficulty, rather than applaud areas of strength. I think when you strip out the clever language this becomes nakedly apparent, which makes me a bit uncomfortable but is honest I suppose.
So here’s the finished product – I wonder what you think?
My work is all about understanding and helping a group of people with problems which sometimes make it hard for them to fit in with most people in the world. These people have lots to give too, but it isn’t always easy to make this happen. Sometimes they can’t talk or when they are older they might become sad. We need to understand them and find ways to change the world to meet their needs. I work with some interested friends and people who are doctors to try to make this happen.
One study is using small computers to help children learn to understand what other people are thinking – things like looking at people, and looking where they are looking too. The children I work with don’t always do this on their own, and they might need some help. I also check other types of computers to see if I think they are any good. I want people who make computers to think about the needs of the children who are going to use them more. I also want teachers and parents to to be able to pick a good computer when they buy a new one.
Another study is asking brothers and sisters of children with problems how they feel. This large study is looking at whether the place you live in changes how you feel when you have a brother or sister with problems. We hope the study will make the way the whole family of a child with problems is approached by the world much better.
Finally, I have a group of studies looking at babies in their first year of life. We are using eye-tracking to understand learning and relationships at this young age. We are working with babies who arrive early and other children with problems. Our plan is to understand early life better and then give help to babies who need it.
As part of this study, we are asking anyone who cares about the study, how do they feel about this kind of work? What are the worries and how can we handle them well? I think this part is really important and I am excited about what we will find.
