Looking critically at autism research: ‘We have to get away from us-and-them thinking’

Photo Credit: Alireza Attari

Scientific Frontline: "At a Glance" Summary: Looking Critically at Autism Research

• Main Discovery: Autism research frequently relies on affirmative research that unconsciously confirms neurotypical biases, often incorrectly applying neurotypical standards and expectations to autistic individuals instead of questioning foundational scientific premises.
• Methodology: The proposed framework advocates for Critical Design paired with co-design, requiring scientists to systematically challenge their own cultural and social assumptions while integrating experiential autism specialists from the absolute inception of the research process.
• Key Data: Findings indicate that autistic children with fewer social contacts do not experience greater loneliness compared to their peers; furthermore, enforcing typical social behaviors, such as increased eye contact or group interaction, frequently results in harmful sensory over-stimulation.
• Significance: Eliminating neurotypical privilege in scientific research ensures that interventions focus on structuring environments to guarantee equal opportunities and genuine acceptance, rather than attempting to force autistic individuals to modify their behavior to fit conventional societal norms.
• Future Application: Sensory-conscious environmental designs, including spaces with controlled acoustics, quiet zones, and specialized seating, will be broadly implemented in public and educational settings to improve physical accessibility and cognitive comfort for the general population.
• Branch of Science: Developmental Psychology, Educational Psychology, and Behavioral Science.

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 premises about autism but rather confirms them. 

As a concrete example: autistic pupils often spend break time 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 the 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 rare that the question is asked: who is this behavior 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 favorite 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. 

Published in journal: Dutch Scientific Journal Autism

Title: Critical design and co-design in autism research. A self-critical look to combat prejudice and bias in research

Authors: Caroline Rieffe, Claudia Libbi, Marieke Bos, Laura Nooteboom, and Dorothe Smith

Source/Credit: Leiden University

Reference Number: psy033026_01

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