I’ve been a researcher working with people with autism for a decade now and in that time I’ve worked with adults, adolescents, young children and their parents, teachers, clinicians and other members of what I often refer to as “the autism community”. Before that I spent a year helping out once a week in a classroom for 8 children with autism when I was fourteen years old and I’ve volunteered on a residential holiday for children with assorted moderate to severe disabilities for over half my life. In all this time, no-one has ever brought me up for use of inappropriate language and I have consciously tried always to use the right vocabulary and the right turn of phrase to describe what I’m doing and the individuals I’m doing it with. But yesterday and today on Twitter I inadvertently offended a number of people whose opinion I respect by commenting on the phrase “There is a puzzle piece missing in their brain” with the following tweet:
@autismcrisis do you agree this is not a bad way for children to grasp neurological / diagnostic differences?
— Sue Fletcher-Watson (@SueReviews) June 15, 2013
The subsequent debate on twitter has profoundly affected me and I’m keen to explore why I got it so wrong.
First, I think there is the matter of the context in which this phrase – “There is a puzzle piece missing in their brain” – was being used. The quote comes from a paper recently made available in the Journal of Mixed Methods Research. I’ve not been able to read the full article as my institution isn’t subscribed to the online first content, but the abstract states that “Elementary school children between 9 and 12 years of age were interviewed on what they believed to be the causes of learning difficulties” and as you can see above, the quote was presented on twitter as “one way typical children (10yrs) now describe atypical children“. My immediate reaction, and the trigger for my tweet reproduced above, was that this was a long way from what I guess I and my 10-year-old peers might have said back in the 1980s UK. The statement does not apportion blame nor use the directly pejorative terminology that certainly flew around my school playground (of which “weirdo” might be a relatively mild example). It includes a reference to the brain, rather than focusing on more superficial features, which I think is positive. By identifying a cause which is outwith the control of the person with the learning difficulty, it represents a degree of understanding of how some behaviours are driven by internal rather than external factors. Maybe I have very low expectations of the average 10-year-old, but this explanation of the difference between typical and atypical children still seems to me to represent a significant step forward in my lifetime. I also note that this is a statement used (by children) to describe children with atypical development presumably including, but not limited to, autism. This specific choice of metaphor might be more appropriate for some learning difficulties than others.
An aspect which undermines my generous interpretation of the statement (as pointed out by a tweeter) is that of course these children got their perceptions of disability from someone – probably an adult. I wouldn’t accept this kind of statement from an adult. And it is quite right that we should expect parents and teachers to be able to help children understand this topic in a way which both does justice to the complex reality, but also presents information in a suitable format for their age. As a parent of two pre-schoolers I am keen to ensure that I learn how to do this well, especially as my children grow up and their realm of experience increases.
Some tweeters offered the following alternative ways to describe neurological differences to children:
— Michelle Dawson (@autismcrisis) June 16, 2013
And here’s another one with my response:
— Sue Fletcher-Watson (@SueReviews) June 16, 2013
As I hope my tweet above indicates, I strongly believe that we must educate our young people (and adults) that differences are to be embraced and treasured rather than feared or diminished. However I do think kids want more than a statement that differences exist. It is worth noting that (again from the abstract) the original paper interviewed children “on what they believed to be the causes of learning difficulties” [emphasis added]. A statement that ‘no-one really knows’ may be accurate but it might not cut the mustard for an inquiring 10-year-old mind.
The second issue which arose from this discussion is around the use of puzzle pieces more generally to represent autism. Puzzle-piece logos are used widely to represent organisations working with and for people with autism. One example is the contraversial but major American research and support organisation Autism Speaks. Among other things, I’ve learned that the puzzle piece logo carries offensive implications such as that autism is a ‘problem’ to be ‘solved’. The implication that people with autism have ‘a piece missing’, and are therefore somehow incomplete, is both offensive and inaccurate. The notion of a missing piece could also imply both the existence and desirability of a cure – ‘if only we could find the last piece of the puzzle’. I can understand these objections to the puzzle piece metaphor, but I think it is worth noting that there are some aspects to recommend it as well. Jigsaw puzzles more generally are something almost everyone can recognise and understand. A puzzle has positive associations – it is a challenge, but a fun challenge with a rewarding outcome, like parenting. A puzzle with a missing piece is not devoid of function – we can still put the pieces together, and with just a bit of imagination we can see the whole picture. And finally, plenty of children with autism are particularly good at puzzle-type games – though this is of course a generalisation, it does at least conjure up positive associations which can shift the focus on to strengths and assets. These positives may be particularly relevant for parents of young children. It is likely that many people adopting puzzle piece logos for their organisations are simply doing their best to find a simple, clear, positive visual shorthand for a complex set of concepts. This website is shortly to be re-launched as DART.ed.ac.uk standing for development / autism / research / technology. A simple list of four themes which cover all the information on the site, with no logo. That challenge is one I have shrunk from!
The way in which we use language shapes our thoughts and feelings, and the societal context in which we all live, as this powerful blog post discusses (with thanks to Jon Brock for the pointer). There are many other issues around appropriate language – see this recent post in which Simon Baron-Cohen calls for a re-cast of autism spectrum disorders as autism spectrum conditions, or consider who should legitimately use terms such as ‘aspies’ and ‘autistics’. I don’t want to be part of the problem. I don’t want to use language that offends, belittles, patronises or bypasses the issues of the community that I work with and aim to support. And I do want to be open about the factors which influence my choice of language, and realistic in the expectations I have of others. I’ve recently been awarded a Beltane Fellowship to undertake some academic public engagement work over the next six months, including developing this blog and my twitter profile. It might seem nonsensical to provide time and money for an academic to focus on such trivialities, but the twitter-mediated debate which instigated this blog post shows how essential it is that channels of communication are open so that we can work together to find the right words to say what we believe to be true.
Here’s hoping, with thanks for setting me on (I hope) a better path: