FORUM UNIVERSAL INTERACTIONS

designing interactive technologies for people with autism. If we want to be able to respond to needs and desires that go beyond mitigating deficits, we need to shift our attention toward a more holistic notion of well-being, empowerment, and the scaffolding of positive experiences. Doing this, however, turns a relatively well-defined problem into a wicked problem, a problem that has neither one best solution nor a straightforward problem statement. 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.

Thus, I argue we need a more designerly and participatory approach to get to those alternative roles of technology and the ways in which they can contribute to the well-being of autistic people. And this has consequences for our methodologies, our epistemology, our theoretical underpinnings, as well as the philosophy we build on.

Participation. The field of participatory design (PD) has gained traction over the years, and more and more practice and research involves users and other stakeholders in the design process. While PD historically had strong ideological connotations, its widespread use has led to more pragmatic interpretations, so that today we see a wide spectrum of approaches. Accordingly, many different methods have been developed to enable people to meaningfully contribute to design processes.

When involving people with autism
in the design process, participatory
methods need careful reinterpretation.
Some of the challenges include
managing anxiety in social group
settings, scaffolding communication
during PD activities, and inspiring
autistic people to think beyond their
narrow interests without taking away
the security these provide for them.
Furthermore, collaborative decision
making in design is ruled by power
structures between participants,
stakeholders, and designers, which
are particularly complex when people
with disabilities are involved. Another
key challenge is that of interpreting
collaborative work. In many cases,
people with autism cannot be expected
to create or articulate design inputs,
but they can contribute by providing
inspirations and ideas that need mindful
interpretation by expert designers.
For all these reasons, levels of
participation have varied considerably
in related work, ranging from using
proxies instead of the user group itself
to attempts at making them full design
partners and including their support
network. However, to go beyond token
participation it is also important to look
at the scope for change participants are
given. And this starts with the design
brief, which very often is not within
the reach of participants. In ECHOES,
for example, autistic children have
been involved in every phase of the
project, but the given intervention
goals have restricted the scope for their
contributions significantly.
So, exploring new meanings for
technology requires us to think about
participation more radically and make
design briefs accessible to participants.
However, such open and exploratory
processes are even more messy and
uncontrollable than traditional PD
approaches.
Disability and technolog y. This
refocusing is part of another broader
argument. It concerns the way we as a
society see people with disabilities and
what our efforts in designing technology
to lighten their burden tells us about
our attitudes. The field of disability
studies has researched the concept
of disability in our society and has
developed a number of theories and
models that describe our understanding
of being disabled. For a long time, the
medical model dominated our views,
defining being disabled by people’s
physical or cognitive differences and
the resulting functional limitations. In
the early 1980s, the disability rights
movement caused a rethinking of
the concept, and the social model of
disability gained traction. The terms
impairment and disability were separated
to convey different meanings. While
the impairment defined the physical or
cognitive difference, the disability was
seen as a social construct that resulted
in impaired people being disadvantaged
A child sharing his ideas on what his future smart object should be like in a participatory design
workshop using low-fi craft materials.

Has our focus on
delivering interventions
obstructed our view on
what could be the real
power of interactive
technology in the lives
of autistic people?