In September 2015 I was gearing up to write the toughest grant application I’d ever written as principal investigator (toughest = most money, longest application form, lowest average rate of success). Wanting to put my money where my mouth is, regarding the need for meaningful community engagement at all stages of research, I had the proposal reviewed by a few individual stakeholders and also created an online survey to see what stakeholders thought about my plans. The survey blurb said:
The purpose of the survey is to find out how autistic people, autism practitioners (in health, education and social care) and parents / family members of children with autism feel about a possible new project. I am applying for funding to build evidence relating to a series of questions about technology, learning and autism, specifically focusing on mobile touchscreen technologies – smartphones, iPads and the like.
I wanted to get a picture of whether members of the autism and autistic communities felt that this would be useful and relevant research – and to respond appropriately to that picture. I also wanted to show my prospective funder that it was plausible that the work I proposed would be supported by the relevant communities. In other words, that it would be possible to recruit plenty of participants and so on.
Impact on the proposal
In terms of the second goal, the survey was a huge success. Not least because I received over 100 responses within 48 hours of sharing the link on twitter and this blog – which is a great return rate and indicates on its own that this is probably a topic area that matters to people.
The first goal, however, which was to build a picture of what people want from research and try to adapt my proposal to respond to those wants, was harder to achieve. In this blog I wanted to explore a little why that was hard to do, as an example of some of the challenges which are often thrown up by attempts to engage across academic / community / practitioner divides.
Translation
One challenge in interpreting and applying the results of the survey came from trying to match the survey content to the proposal. I wrote the survey specifically to gather information about one specific proposal, but nevertheless that matching was a challenge. One of the reasons for this was the necessary gap between the language of the proposal (intended for an academic reviewer) and the language of the survey. For example, in the survey I specified four research questions which I wanted to put into the proposal:
1. what type of thing can we teach with an app?
2. what style of app works best for learners with autism?
3. how do we measure whether an app is working?
4. are apps better than / complementary to learning with a therapist or your parent?
In the proposal these questions were written as follows:
- What commercially available mobile touchscreen technologies provide highest quality support for children with autism?
- How do children with autism interact with mobile touchscreen technologies?
- How can we meaningfully measure mobile touchscreen technology use and relevant outcomes?
- How does learning from mobile touchscreen technologies relate to other systems of early years support, including manualised therapist sessions and parent-training?
So you can see that in constructing the survey I decided to translate the more complex wording of my research questions into something more accessible for a general audience. And in doing so, I lost some of the detail of what I’m planning. In interpreting the results of the survey I had to make those translations in reservse, working out how the concerns of the community could be appropriately reflected in an academic piece of writing. This isn’t just about replacing a simple word like ‘apps’ with a piece of technical jargon like ‘mobile touchscreen technology’ but also about identifying which concerns raised by the community are viable as research questions. I’ve written about this in more detail elsewhere – research is great at making generalised statements but for specific recommendations a skilled practitioner is really what you need. So one reason that community concerns might not be reflected in my grant application is that I just don’t think research is the right tool for the job.
What am I qualified to do?
A second reason why some community concerns didn’t ‘make it’ into the proposal is because I just can’t convincingly argue that I am qualified to address them. The quest for grant funding is already very competitive and one element is not just how good your proposal is (great question, appropriate methods to answer it, important outputs) but how well you personally, and your host institution, are placed to do it. So for example, if people in the survey raised the fact that these questions would also be interesting if applied to adults, rather than just children, I basically had to ignore that.
I have worked with autistic adults in the past, and am keen to do research which has relevance across the lifespan. But my most recent autism and technology projects have largely been focused on children. In addition, the theoretical model which I’m using to justify this approach is very much built around the child learner. It draws on principles like the idea that key skills play a pivotal role in development and learning these key skills in early life can have a dramatic positive effect on later learning ability. This kind of model is much harder to apply to adult learning and so I would have to had to entirely change the basic justification of the research, and I suspect it would have been weakened as a result. After all, this kind of research is not about providing benefit to the participants directly involved (though we clearly want them to have a positive experience) but instead about building knowledge that can contribute to practice which will benefit global communities in the future. This is one of the big reasons, for me, to focus on learning in children rather than adult supports – what if we could get it right early in life so that autistic people growing up have the skills they need to engage with the neurotypical world and be the best, happiest, autistic person they can be?
Academic expectations and playing the game
A third challenge which arose from my pre-submission consultation was working out what to do about the word ‘intervention’. When asked recently about what ‘intervention’ means I said that education covers learning which everyone needs to be taught explicitly – we all need education to learn to read and write, to do fractions or long division. Intervention covers teaching which is only required for atypical learners – like explicit teaching of speech, symbolic play or friend-making. These are things which a neurotypical child usually ‘picks up’ without any special support, but which an autistic child might not learn for themselves. Intervention in scientific research can also mean the provision of supports (such as a communication aid) which give someone an alternative way to achieve an outcome (e.g. speech).
But, back to the grant proposal. Intervention (which might also be called therapy or treatment) as a word is not popular among many people in the autism and autistic communities. It comes loaded with notions of trying to change an autistic person into a neurotypical person, and places all of the burden to adapt and learn on the shoulders of the autistic minority, rather than on the neurotypical majority. Hence, one of my stakeholder reviewers suggested that I remove the word all together from my application. This was a real struggle. On the one hand I wanted to respect her advice and I too am uncomfortable with the notion of ‘intervention’ as it is often applied. But I also knew that my proposal would be reviewed by researchers in the field for whom ‘intervention’ is the scienficially precise, and familiar term for what I am suggesting. If the researchers who read my proposal don’t get it, or think I’m a crank, or even just find the process of reading it unnecessarily effortful, I am unlikely to secure the funding. In the end, in this case, I decided however that I would remove the word intervention. Instead I spend the proposal talking about ‘early years support’ which more accurately reflects the way in which I hope the special uses of technology which we are planning to develop and test will support autistic children (and their families) along their personal developmental path.
So, did you get the grant?
I don’t know, I’m afraid. It’ll be another couple of months before I hear back from the committee and if I get through that stage I’ll need to go for an interview too. But I wanted to share this experience while it was still relatively fresh in my memory and also while the kind and generous people who completed the survey could still (hopefully) remember doing so. If you are one of those people who gave up their time to provide advice on my proposal, then thank you. I was able to incorporate a lot of the comments and I also found that a lot of what I had planned anyway seemed to chime with what the community wanted. So the survey was extremely useful and encouraging. But if I get the funding and you hear in a few months or years that the project is underway and it doesn’t seem to have taken account of your suggestions, I hope this blog will explain why that might have happened.
A note on ethics:
NB: At the start of the original survey I stated that: “It should be noted that this survey has not been reviewed by an independent ethics board though I have had the content checked by peers in my research field. This is because of a few things: 1. the survey is entirely anonymous and doesn’t not ask for personal information. 2. the survey data will not be shared in public, including no academic publication. They are solely for my personal use in developing a new research proposal and may be mentioned in a grant application only. 3. this survey does not constitute a research project in its own right.”
I have thought carefully about whether my decision to write this blog post contravenes statement number 2, that the ‘data will not be shared in public’. I came to the conclusion that discussing the difficulties of responding to some of the themes raised in the survey did not constitute ‘sharing the data’ but if anyone has concerns, especially those who contributed to the survey, then I would encourage them to get in touch.
