ASDtech interviewed Dr Yurgos Politis on the topic of inclusion of neurodiverse populations in education and research as well as virtual reality in treatment and education for autistic people.
Yurgos Politis (YP): As researchers, academics or other relevant professionals working on designing/developing a product, education/training or a service for a specific population, we tend to have developed a thinking around what we think is best for them, based on our research, and the broader literature. We are using all the skills in our arsenal (inquiry, analysis, synthesis, reflection, problem solving and common sense) to come up with the best solutions to the challenges and obstacles that a special population is facing. However, in most cases, what we lack is being a member of that population, which means that despite our best intentions, we are not aware of certain manifestations of the condition the population are living with and not aware of the effect other co-morbid conditions (they may have more than one conditions) may have on their everyday lives.
Enter Participatory Design. This is an approach that allows the population to be part of the design and development process at every stage, from the inception of the idea to testing and finally creation of the final version of the assistive technology. This ensures that we get the population involved, engaged and motivated to help us, it will allow the population to have a voice and feel that their needs and concerns are heard, and it will give us a different perspective to the issues we are attempting to tackle through our research. It will hopefully also inspire us to do some out-of-the box thinking, because we need to find ways to get those populations involved in a way that is not tokenistic, since we need new ways to address a number of challenges to Participatory Design that include ethical concerns, reading/writing ability, and communication difficulties among others.
Participatory Design is an approach that generally produces a better outcome and has been used by industry for several decades in order to better meet the interests of their potential clients. However, recent studies have shown that the approach can sometimes produce an outcome that is less effective than its non-PD developed version. That can be attributed to the fact that if we are working with more complex technologies, then the population would need to have some sort of basic knowledge and understanding about it and maybe even require an advanced skillset (e.g., programming, coding) in order to make a meaningful contribution. Therefore, sometimes it is not possible to involve a special population in Participatory Design and seldom, when Designing by focus groups can be stifling to a new idea, as Steve Jobs once said, it is best to allow creativity to flourish. It is a balancing act.
YP: Inclusive Learning is the future of education. It is highly aspirational and student centric. Moreover though, it promotes a “one-size-fits-one” approach to teaching and learning, where teachers should aim at meeting the needs and preferences of each of their students at an individual basis. That sounds daunting. Teachers are already under an enormous amount of pressure and have huge workloads which are unappreciated by society. However, educators, at all levels, need to understand that by adopting an Inclusive approach to their teaching, they help the students most in need. Firstly, the teaching material will address multiple intelligences. For instance, some students are visual learners, others may be auditory learners. When showing a video, a more inclusive approach would be to add captions. This will also be helpful to their students with hearing difficulties and would also be of help to students for whom English is not their primary language (in an English-speaking country). Therefore, by adding captions to a video the teacher would improve the learning experience for a number of groups.
There is no denying that adopting this approach is time consuming. However, strength is in numbers. We are living in the internet era, where it is very easy to freely find material and exchange ideas. We are also striving for Open Science. A starting point would be to read more about Inclusive Learning and get some ideas as to what is possible with the tools we currently have, such as the Inclusive Learning Handbook. There are courses such as MOOCs and workshops they can take to learn how to make their material more inclusive. Moreover, teachers should work together with their colleagues in the school and share material they have created. They should also consider joining professional associations and/or create informal networks where they can exchange ideas and create repositories that would hold Open Educational Resources to benefit everyone.
YP: I need to start by stating that I am not a VR developer or coder and that I have been exposed to the VR world relatively recently. When I was doing my Marie Curie project on developing training for conversation skills for young autistic adults, I looked at varied assistive technologies that would be the delivery mechanism. I chose VR because numerous studies have shown that it offers a safe environment for the autistic population, less anxiety provoking because they can de designed to minimise unwanted stimuli and a degree of realism which of course depends on the level of investment and sophistication of the Virtual World (a Virtual World is a fantasy 2-D space; when you add a Head Mounted Display, then it becomes VR).
My primary focus was to carry out Research in a Responsible fashion (RRI) by adopting a methodological approach that included the autistic population at stages of development of the Virtual World I was going to utilise for my intervention, i.e. Participatory Design. In my opinion, that is more important than the technology that I would use as a vehicle for the delivery of the intervention since the training material could be adapted to fit in a variety of such technologies. The VR provider that best met those requirements was Hao2, which is an award winning social enterprise (80% of employees are autistic) that has created the 3DNovations VR solutions. Their VR is an adaptable environment that can be designed to meet a client’s specific needs and has been used in an employment setting (job centre in the UK) and in medical settings among others.
YP: My Fellowship project work focused on ways that technology (Virtual Reality, in the first instance) can enhance the lives of people with developmental disabilities. More importantly though, my work wants to promote a “one size fits one approach”, by cultivating agile, inclusive, responsive approaches to design and encourage that population to be part of the design process of products and services so that the outcome better meets their needs and preferences. I co-founded the Neurodiversity in Design group in September of 2017, which advocates the UN and EU’s core beliefs that access to suitable services, products, and technologies, is one of the rights of people with autism and intellectual disabilities, and considers participatory design (PD) as an exciting way of ensuring this right.
My project adopted a Participatory Design approach in the development of conversation skills training for people with autism (on the upper end of the spectrum), which was delivered through a Virtual World. In this initial, pilot phase of the overall project plan, people with autism were involved at every stage of the process, from inception of the VW environment, to testing of the VW and of the training material and lastly the intervention itself, followed by feedback of the intervention. By being part of the design process of the training, autistic people had the opportunity to provide their perspectives and influence the outcome so that it had a certain degree of customization. This created a training product that better suited the participants’ abilities.
We thank Dr Politis for taking the time to share his expertise with the ASDtech community!