Looking critically at autism research: ‘We have to get away from us-and-them thinking’
Autism research is at times saturated with implicit values, norms and possible prejudices. Researchers should be more aware of this, says development psychologist Carolien Rieffe. She advocates Critical Design: a self-critical view as a scientific method.
Whenever she hears someone talk about autistic people in terms of ‘they’, the hairs on Carolien Rieffe’s neck start to stand up. That one little word is so telling. ‘We are here, and they – autistic people – are somewhere else,’ Rieffe explains. ‘Who are you to say that there’s no one here present with autism?’ Talking about autistic people as a group that is somewhere else, means excluding autistic individuals from the public space. That might happen unwittingly, but nonetheless systematically. It is these unconscious assumptions that are the key topic in a new essay that Rieffe and colleagues have written for the Dutch Scientific Journal Autism.
Affirmative research
‘Each researcher has their own norms and assumptions, which are often unconscious,' states Marieke Bos, one of the co-authors. In autism research, that manifests itself systematically in ‘affirmative’ research: research that does not challenge particular premises about autism but rather confirms them.
As a concrete example: autistic pupils often spend break times alone, so researchers develop interventions to encourage more social interactions. The assumption that more social contact is also better for autistic children is never put up for discussion. Rieffe’s own research, however, shows that autistic children who have fewer social contacts do not feel lonelier. What matters is a sense of being accepted.
‘You apply the needs of neurotypical pupils to children with autism,’ Rieffe says. ‘And that can do more harm than good.’ Encouraging more social contacts or more eye contact can lead to over-stimulation. It is only rarely that the question is asked: who is this behaviour being modified for? Autistic children among themselves have no need for this. Rieffe calls it the ‘neurotypical privilege’: an ingrained intolerance for diversity, which is so automatic that nobody even notices it.
Critical Design: challenging the status quo
An alternative approach is Critical Design, where assumptions are challenged and put up for discussion. The researcher reflects on their own cultural and social background and how these influence their research. ‘If you don’t discuss these assumptions critically, publishing your assumptions confirms the status quo. The prejudices remain intact,’ says co-author Dorothe Smit (VU Amsterdam).
Critical Design has to be done alongside co-design: you have to include experiential autism specialists from day one, not as a sounding board afterwards. A fundamentally different way of thinking is needed. Not how can we help autistic people to join in, with its implicit claim of more ‘power’ in the hands of the helper, but rather what kind of environment guarantees that everyone has equal opportunities? Claudia Libbi comments: ‘Inclusiveness is not a favour that we grant to someone. Rather, we take particular actions to guarantee equality for everyone. That may sound very subtle, but there is a fundamental difference.’
Designing for autism work well for everyone
Quiet corners, good acoustics, well-designed spaces: places that are designed with autism in mind are generally appreciated by everyone. The autism-friendly half-open seating areas at Leiden University are always the favourite study spots for many students, not only those who are autistic.
An environment that takes into account sensory overstimulation is not an exception intended for the minority, but a benefit for the majority.