April is National Autism Awareness Month, making it a great moment to discuss the often difficult relationship between academics researching autism, and the autistic community. Some autistic individuals have expressed discomfort with the way neurotypical autism researchers portray the community, accusing them of dehumanising autistic people, and spreading harmful stereotypes.
It’s definitely true that some previous research on autism has been incredibly problematic. For instance, Rachel Nuwer recounts some of the offensive language previously used to describe autistic individuals. Other conclusions that have been drawn about autistic people are less obviously offensive, but still help spread harmful stereotypes. Some research papers like claim that autistic people have a weak ‘theory of mind; which mean that they find it difficult to predict what others might be thinking or feeling. Critics claim this viewpoint has led to the much-disputed claim that autistic people lack empathy – but this claim has since been challenged.
It has also been asserted that much autism research is unnecessary, and doesn’t actually aim to improve the quality of life of autistic individuals. One such controversy arose in 2011, when research by the University of Cambridge claimed that workers in the STEM sector who met their partner at work were more likely to have autistic children. The research was criticised both for having no positive impact on the quality of life of autistic individuals, and for reinforcing the long held stereotype that all autistic people are good at maths and science. Unfortunately, this is a pattern in autism research; many academics simply identify trends and patterns in the autistic community, rather than producing research that benefits autistic individuals.
Despite this, I still firmly believe that autism research can have a positive impact. A study found that autistic people dislike the use of labels like ‘high-functioning’, and recommended they be scrapped. This is a clear example of research that aims to publicise the feelings of the autistic community. On a similar note, a 2019 study by the University of Manchester reviewed behavioural therapies used on autistic children, and suggested they may not be as effective as previously thought.
Given this research aimed to ensure autistic children receive the correct support, I would argue it’s a prime example of autism research that benefits the autistic community. Research like these are the reason I think working in autism research can be a great way for neurotypical people to be allies to the autistic community.
So, how can neurotypical people ensure they are researching autism sensitively? I think there are three main areas that need to be addressed.
First, the research should have a clear benefit to the autistic community. One great aim for autism research is to improve understanding of the medical science behind autism, like this research on the genetic basis for autism. Another important aim is to improve the quality of life of autistic people, as seen in a research project, which encouraged teachers and academics to work together to produce teaching strategies that improved educational attainment in autistic pupils. If autism research does not meet one of these two aims, there is an argument that it might not benefit the autistic community.
Second, a good neurotypical autism researcher is someone who regularly interacts with the autistic community. The best research is produced while working closely with autistic people. Despite this, an article in Science Mag expressed concern that some autism researchers rarely actually interact with autistic people. An easy way of combatting this issue, and educating yourself about the thoughts and feelings of autistic people, is to check out #ActuallyAutistic on social media. Autistic people regularly post about issues associated with autism, such as terms they consider outdated or offensive. This April, as neurotypical people, we should all be using social media to amplify the voices and opinions of autistic people.
Finally, neurotypical autism researchers should be mindful of the language they use when referring to the autistic community. Recent research suggests that autistic people dislike the term ‘people with autism’, for instance. Keeping up with #ActuallyAutistic on Twitter is a great way of learning about the preferences of the autistic community. The language used to describe autism evolves regularly, and researchers should make sure they are ‘in the know’ in order to avoid causing offence. One current debate focuses on the phrases ‘autism awareness’ versus ‘autism acceptance’, with autistic people pointing out that the two are different things entirely. Personally, I’d rather promote ‘autism acceptance’ than ‘autism awareness’. It’s one thing to be aware that autism exists, but it’s another entirely to truly accept autistic people.
I’d like to finish by sharing my hopes for the future of autism research: a world where neurotypical people produce research that improves the quality of life of autistic people, while working closely with autistic people.
Em Richardson is about to start a PhD project focusing on making the curriculum in British special educational needs schools more accessible for autistic children.