Bringing technologies into measuring behavior: a personal journey
Mr. Cusack, a 26-year-old PhD student at the University of Aberdeen in Scotland, was diagnosed with Asperger syndrome at the age of 12. He says his condition has helped define his work. His scientific career is young, but his research holds promise.
Gerardo Herrera: How your diagnosis has helped you to define your training and work?
James Cusack: When I was first diagnosed as being on the autistic spectrum, expectations were very low and people thought that my future would be characterised by limited achievement. My own personal journey has helped prove to me that people can meet their potential. In this regard, it has inspired me to understand how we ensure other people with autism, whose needs I have a great deal of empathy with, can meet their own potential.
Much of the natural empathy I have gained for people with autism has been acquired through being a fellow individual with autism, most often a fellow pupil at the specialist base I attended. This has been valuable in providing a more natural behavioural understanding of autism which you don’t get as a teacher, researcher or health professional. I think that probably helps me to more efficiently understand what the priorities in research need to be.
GH: Therefore, this also helps you to understand other people with autism better?
JC: There is no doubt that it also helps me work with people on the spectrum to collect data in my scientific work but also to help ensure that the experiences of others with autism are represented. It is hugely important to me as an individual with autism that I do not only explain my own experience but ensure the experiences of others are represented too and change is made to address any need or requirement. In this regard I’ve been proud to be part of an autism bill campaign for Scotland which led to Scotland’s first ever autism strategy. Although this is very rewarding, in research I feel it is often frowned upon to leave “the lab” and publicly engage, but if you want to ensure change in the real world (which is the ultimate challenge) I think it’s essential. The autism strategy was a great example of immediate and positive change.
GH: How would you describe your adolescence, after diagnosis?
JC: My period of adolescence was probably the most important and challenging period in my life. When I was diagnosed at 12, most people thought that I would require residential care or parental care for the rest of my life; people thought that I wouldn’t really attain educational qualifications and it was assumed that I would not get a job. I was diagnosed with clinical depression, and at this point I, quite reasonably, expected that life was going to be pretty miserable and did not wish to continue with it.
GH: What people helped you to achieve your potential?
JC: A lot of credit has to go to my parents who I believe showed admirable determination at a time when support for people with autism was very limited. Incredibly, they forced the local authorities to ensure that I was placed in a base which specifically to supported pupils with autism. As well as having pro-active parents I was also fortunate to attend this excellent world-leading base set within a mainstream school led by an outstanding teacher – Maria Parker. Here I went from a desperate position where: I couldn’t attend classes, seemed incredibly strange to classmates and had significant needs; to a position where I was elected as most outstanding pupil of the year. It is a tribute to my parents and the base that I succeeded. It is also a tribute to the belief and the sense of responsibility they instilled in me. In the base it was demonstrated that it is not only the environment that is important but the attitude of the diagnosed individual. This was not only useful in terms of my progress, but in igniting my interest in autism which was sparked by delivering educational presentations based on my personal experience.
GH: You have a MA in psychology, knowledge in autism diagnostic tools (such as ADIR or ADOS) and also you have skills in computer programming. Where are your interests in technologies coming from?
JC: Naturally I like to try and quantify everything. My friends quite often say that I will bring numbers and odds in to everything!
So when I wanted to gain an understanding of autism and did a degree in psychology, I was a little unsatisfied to learn of how behaviour was quantified. I felt it was important (as I know many people do) to improve this. In my PhD I used visual psychophysics to understand whether there was a biological motion perception deficit in autism. This was useful as it used computational modelling to understand the sensitivity of each individual with or without autism to this stimulus. Further to this I was able to not just ask global, poorly controlled questions I could manipulate the stimulus to specifically understand each component of biological motion and whether any deficits existed. This was not only very satisfying; the work we did was also an example of how to answer scientific questions in a way that was quantitatively valid and comprehensive.
GH: What other point of your research would you like to highlight?
JC: My PhD shows that there is certainly value in doing experiments in highly controlled environments, but it is also very important to understand and quantify behaviour in autism in the real world. The ADI-R and the ADOS are certainly impressive in many ways in terms of diagnosis and I have a great deal of respect for them, but they do have had a number of limitations which until recently could not be overcome.
GH: In this sense, what can we expect in the following years?
JC: I think we are now moving towards a stage where we could potentially use technologies to quantify human social behaviour in ecologically valid settings. I hope that we can move towards a stage where we can collect objective, longitudinal data, which provides unique insight into behaviour in autism. For me this is incredibly exciting, as a challenge and an opportunity.
It could have positive implications for defining autism, diagnosis, treatment measures and intervention, and thus help achieve what I believe has to be the main goal in autism research: to help people affected by autism achieve their potential.
GH: Thank you very much for accepting our invitation to participate in ITASD Conference. See you in Valencia on July 2012!