Damian E M Milton MA, PGCert, BA (Hons), Dip(conv), PGCE, Mifl, MBPsS
Doctoral 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.
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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.
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“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).
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Participatory design with autistic people.
The participation of autistic people in
research.
Controversies in the field.
Examples of good practice.
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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.
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Milton et al.
(2011)...another Milton
that is...
Active participation
Inclusive debate
Heavily influenced by
theories of play
Degrees of citizen power
Citizen control
Delegated power
Partnership
Degrees of tokenism
Placation
Consultation
Informing
No power / non-participation
Therapy
Manipulation
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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?
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People on the autism
spectrum rarely in the
role of researcher,
traditionally seen as
passive subjects.
The ‘glass subheading’ (Milton and
Bracher, 2013).
Involving autistic people in the design, development and evaluation of technologies
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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).
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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.
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“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).
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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’.
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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.
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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.
12
10
8
Autistic aduts
6
Non-autistic parents
Non-autistic practitioners and academics
4
2
0
Radical
Progressive
Prag-Eclt
Functionalist
Behaviourist
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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).
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“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).
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“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).
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?
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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): 509526.
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.