Involving autistic people in the design, development and evaluation of technologiesDamian E M Milton MA, PGCert, BA (Hons), Dip(conv), PGCE, Mifl, MBPsSDoctoral Researcher – Autism Centre for Education and Research, University of Birmingham.Research Assistant – London South Bank University.Head of Autism Knowledge and Expertise (Adults and Community) – National Autistic Society.

A bit about me...

I’m autistic (diagnosed 2009) – as is my son (diagnosed 2005).

A background in Social Science (initially Sociology).

Studying for a PhD in the education of people on the autism spectrum.

On the programme board of the AET. On the scientific committee for

Research Autism. Researcher at London South Bank

University. Newly appointed as Head of Autism

Knowledge and Expertise (Adults and Community) at the National Autistic Society.

The machine-like metaphor

“The autist is only himself...and is not an active member of a greater organism which he is influenced by and which he influences constantly.” (Hans Asperger).

Introduction

Participatory design with autistic people.

The participation of autistic people in research.

Controversies in the field. Examples of good practice.

Participatory design

Involving all relevant stakeholders in the design process in order to better meet needs.

Not a design style, but an ethos for design processes.

Similarities in ethos with participatory research – e.g. action research.

Helps to define initial issues and evaluation of proposed solutions throughout development.

Claystation

Milton et al. (2011)...another Milton that is...

Active participation Inclusive debate Heavily influenced

by theories of play

Arnstein (1969)

Degrees of citizen power Citizen control

Delegated power

Partnership

Degrees of tokenism Placation

Consultation

Informing

No power / non-participation Therapy

Manipulation

Aspects of social participation

Acceptance and understanding – a sense of belonging.

Engagement in public and political life – being able to express oneself and affect change.

Individual and collective concerns. Present lived realities – and working

toward a more collaborative future?

The autistic voice and the production of knowledge

People on the autism spectrum rarely in the role of researcher, traditionally seen as passive subjects.

The ‘glass sub-heading’ (Milton and Bracher, 2013).

Aims and objectives – controversies in the field

Models of disability. Normativity or the

acceptance/celebration of diversity?

Behavioural outcomes and ‘social skills’ or understanding and autonomy?

Baggs (2012) - communication page.

Positivist RCTs unlikely to be considered the ‘gold standard’ amongst design researchers – so why so in the field of autism?

Where creativity and innovation rests? Designers? Stakeholders?

Collaborative communities of practice (Wenger, 1998).

Involving autistic people in the design, development and evaluation of technologies

Practicalities

Is there any such thing as ‘fully representative’?

How can controversies be handled ethically?

Not everyone wishes to be a researcher or be part of a design team (although some will), but do want their views heard, understood and utilised to help others.

Variety of consultation and participatory methods can be used – yet may need to start with small steps.

“While deficits provide clear targets for technology to address, designing more holistically requires us to explore what is meaningful in the lives of autistic people and develop solutions that are firmly situated in their life-worlds. And the only way to do this is to involve people with autism in the design process and let them guide us into the corners of the design space we have not before considered exploring.” (Frauenberger, 2015: 57).

Are assumptions made by researchers unjustified?

Social skills training and rule-based repetition (Frauenberger, 2015) or monotropism (Murray et al. 2005, Lawson, 2010, Milton, 2012a)?

Theory of mind deficit or the double empathy problem (Milton, 2012b)?

The capacity of less verbal autistic people to participate.

‘User-testing’ and ‘taking ownership’.

Expertise

Collins and Evans (2007) suggest that expertise is primarily based on the acquisition of tacit knowledge.

Ubiquitous expertise includes an endless number of skills and knowledge that sustain the forms of life and culture of society (e.g. fluency in natural language or moral sensibility).

Specialist expertise requires immersion in the language and practice of expert communities.

From “beer-mat knowledge” to “interactional” and “contributory” expertise.

Interactional expertise

How much interactional expertise is possible between autistic and non-autistic people (Milton, 2014a)?

Gaining expertise in what it is to be autistic, would take immersion in the culture and practices of autistic people, yet it is questionable as to what extent such immersion is possible for non-autistic people and it is certainly doubtful that many established researchers have made the effort.

Spectrum of educational views

Radical Progressive Prag-Eclt Functionalist Behaviourist0

2

4

6

8

10

12

Autistic adutsNon-autistic parentsNon-autistic practitioners and academics

Participatory methods in practice

Gaudion et al. (2015) – Exploring issues of participation for the less verbal and for autistic people with learning disabilities.

The Theorising Autism Project. The Autonomy journal. Personal construct theory (PCT). AutreachIT. The ASK app. The Participatory Autism Research Centre

(PARC).

Processes that have an impact

“Initial impressions from pilot testing suggest that children have enjoyed using the prototypes and teachers have found them useful; we suggest that our participatory design methods have strongly contributed to this positive response.” (Parsons et al. 2011: 29).

Conclusion

“Traditional methods of consulting and working in partnership may not always be effective, and new avenues for connection may need to be sought, however when collaborative ventures are pursued, and when people on the autism spectrum feel included and empowered, the ability to live as one chooses greatly increases.” (Milton, 2014b).

Questions for discussion: What is it that you are

trying to achieve through your work, and why?

Can normative / remedial research also be considered participatory (in the field of autism)?

What practical actions are you going to implement in order for autistic people to be able to participate in your communities of practice?

References

Baggs, A. (2012) Communication page I used to handle that invasive woman I met. Accessed from: https://ballastexistenz.wordpress.com/page/7/

Collins, H. and Evans, R. (2007) Rethinking Expertise. London: University of Chicago Press. Frauenberger, C. (2015) Rethinking autism and technology, Interactions, Vol. 22(2): 57.

Gaudion, K., Hall, A., Myerson, J. and Pellicano, L. (2015) A designer's approach: how can autistic adults with learning disabilities be involved in the design process? CoDesign: International Journal of CoCreation in Design and the Arts, Vol. 11(1): 49-69.

Lawson, W. (2010) The Passionate Mind: how people with autism learn. London: Jessica Kingsley. Milton, A., Winton, E. And Hollis, E. (2011) Remodelling Home: Engaging the Public in Architectural and Design

Debate through Participatory Design. Design Principles and Practices: An International Journal, Volume 5(4): 509-526.

Milton, D. (2012a) So what exactly is autism? London: Autism Education Trust. Milton, D. (2012b) On the Ontological Status of Autism: the ‘Double Empathy Problem’. Disability and Society. Vol.

27(6): 883-887. Milton, D. (2014a) Autistic expertise: a critical reflection on the production of knowledge in autism studies.

Autism: The International Journal of Research and Practice (special edition ‘Autism and Society’), Onlinefirst, 17/03/14.

Milton, D. (2014b) What is meant by participation and inclusion, and why it can be difficult to achieve. NAS Ask autism conference: Participation and inclusion from the inside-out: autism from an autistic perspective, London Jan 2014.

Milton, D. and Bracher, M. (2013) Autistics speak but are they heard? Medical Sociology Online. Vol. 7(2): 61-69. Murray, D., Lesser, M. and Lawson, W. (2005) ‘Attention, monotropism and the diagnostic criteria for autism.’

Autism. Vol. 9(2), pp. 136-156. Parsons, S., Millen, L., Garib‐Penna, S., and Cobb, S. (2011) Participatory design in the development of innovative

technologies for children and young people on the autism spectrum: the COSPATIAL project, Journal of Assistive Technologies, Vol. 5(1): 29-34.

Wenger, E. (1998) Communities of Practice: Learning, Meaning and Identity. Cambridge: Cambridge University Press.