Autism Research—What’s New in May
This research roundup picks out some of the current big debates on autistic lives, and showcases new and important research from teams and academics working within the field.
Who decides the ‘right’ way to learn to speak?
Haydock and team (2024) consider ‘gestalt language’. In other words, where young autistic individuals say a whole phrase heard elsewhere, e.g. “Do you want a cookie” and will repeat it precisely, to mean various different things related to cookies, or to food. Instead of standard sentences, those kinds of repeated phrases are used for spoken (mouth-word) communication. Neurodiversity-affirming researchers now realise that this kind of ‘whole phrase at once’ approach is exactly right for language development for some autistic individuals, not a faulty thing to be corrected. A very good article for teams supporting autistic individuals who do not use standard speech patterns.
Autistic people can communicate well with one another—further evidence?
Peng and team (2024) allocated participants into groups of high, medium and low autistic-traits. Using brain scanning and questionnaires, they discovered what happened when e.g. two high trait individuals had a conversation. As one might expect, high autism trait pairs used reduced eye contact, reduced turn-taking, and reduced signs of standard emotional sharing. It would have been standard for teams to declare this to be a sign of deficit. But, brain scanning showed very good synchronisation between them, and they reported that they enjoyed the experience more.
What gives a good quality of life for autistic people?
MacKenzie and team (2024) asked 125 autistic people age 16-45 to give information about employment, depression, anxiety, and social participation. The team also asked whether these related to quality of life overall, and in particular e.g. physical health, psychological wellbeing, and social relationships. Whilst it is standard to believe that employment equals better quality of life for people, this was generally not the case for autistic individuals. Likewise, more socialising did not improve quality of life for most autistic people, unless they also scored low for anxiety. Lots of useful findings, therefore, that challenge standard wisdom about what a ‘quality of life’ should be. It shows how vital it is to ask, and really listen, rather than assume.
OCD Versus Autism?
There has been a lot of confusion about what is Obsessive Compulsive Disorder and what is a characteristic of autism, e.g. autistic stimming that can be a joy and a good way of regulating for many autistic people. Standard checklists have often been very unhelpful for teams. Long and team (2024) ask 15 autistic people to explain the differences. Participants said that their own autistic repetitive behaviours, activities and interests were vital for their identity and related wellbeing, and helped them to manage anxiety. OCD behaviours and thoughts caused extreme anxiety and were very much not something that aided healthy identity. Worth reading, and again showing how important it is to have good conversations with autistic individuals, to work out what needs support /therapy, and what needs encouraging and acknowledging as aiding quality of life.
Stimming (repeated movement/sound): purposeless for who?
Marie Camin looked at past research into stimming for autistic people. Of the 10 studies found, none aimed to investigate functions of stimming.
Overall, the research shows that Autistic adults view stimming as crucial in regulating their emotions and bodies. Understanding the reasons behind stimming is important, as there are assumptions that stimming is "purposeless". …children and adults may feel pressure to suppress stimming in front of others. However, stimming may be necessary in workplaces, educational settings, and medical appointments.
There are many interventions that still assume that stimming is something that gets in the way of education, progress and quality of life, so this is a very welcome addition to the research on the subject.
Does masking mean better friendships and relationships?
Generally no. This was the finding from Ridgway and team, who looked at the existing research to see if they could find evidence of improved social outcomes from masking/camouflaging being autistic.
Results reveal that camouflaging was a main strategy in pursuit of friendship, with little evidence for intimate relationships, in this sample of autistic adolescents and adults. For most, camouflaging is exhausting, often ineffective and inefficient, and ultimately a challenge to one’s social authenticity.
Again, with many interventions assuming that performing normality is the pathway to happiness for people, this provides a strong challenge to that idea.
Autonomy and Autistic people with learning disabilities
In this study by Ryan et al (2024) “Participants identified (1) choice and control, (2) communicating their way, and (3) safe environments as important and showed us how they wanted to be supported in each of these three areas. We also identified having autistic facilitators as an overarching strategy.”
Morality and Autistic people
Greenberg and team (2024) take a look at morality. Some really interesting findings that challenge the common myths that autistic people don’t care about others and aren’t to be trusted. The autistic scores for caring were the same as for nonautistic people, on average. They were also very fair, generally, but less likely to ‘bow to authority’.
Negative views of autistic people in research journals?
I follow the immense progress we have made in recent years in understanding how many autistic people are repeat victims of crimes, bullying, ostracism and an extensive range of other negative experiences. The cumulative impact, or single major event, can lead to Post Traumatic Stress, and so I was interested to see, for example, what this article had to add to autistic lives and thriving.
Al Abed et. al (2024) open with the following description. I have highlighted some of the negativity and outdated descriptions, which unfortunately occur rather often in research papers:
Autism spectrum disorder (ASD) is a neurodevelopmental disorder caused by a combination of genetic and environmental factors that impair neuronal circuit function and lead to behavioral difficulties, such as altered social behavior and repetitive movements (1,2). Beyond the core traits, people with ASD present with cognitive defects, including hyper-reactivity to sensory stimuli (3), abnormal fear conditioning (4), and altered declarative memory.
There are plenty more negative descriptions of autistic people to be found. “…impaired emotional regulation and cognitive rigidity…” for example, with PTSD described as a maladaptive process, not as a potentially very natural response to traumatic experiences.
It would appear that such articles rely on authors, reviewers and editors not having read much (or any?) modern research on neurodiversity and newer findings about autism. I looked, for example, at their reference supporting alleged “abnormal fear conditioning”. It was from 2008, so more than 15 years out of date, and the study in question apparently only looked at mice. Oddly, this current paper focuses on mice as well. It perhaps relies on a belief that there is such a thing as an autistic mouse, and that what applies to mice behaving in a particular way must apply to autistic humans.
When writing papers, it is worth reflecting on the number of researchers who are autistic. What do colleagues of such teams make of being described in wholly negative ways, one wonders? With perhaps only 1 in every 10 autistic adults identified, we need to be thoughtful about how easy it is for as-yet unidentified autistic colleagues to recognise themselves in descriptions and feel welcome in laboratories. Are our laboratories inclusive environments, or ones in which neurodivergent colleagues are effectively forced to hide their identities?
Is it time to bring professional and academic challenge this type of language in research?
References
Al Abed, A. S., Allen, T. V., Ahmed, N. Y., Sellami, A., Sontani, Y., Rawlinson, E. C., Marighetto, A., Desmedt, A. & Dehorter, N. (2024). Parvalbumin interneuron activity in autism underlies susceptibility to PTSD-like memory formation. Iscience, 27(5). Available at: https://doi.org/10.1016/j.isci.2024.109747
Greenberg, Y.D.M., Holt, R., Allison, C. Smith, P., Newman, R., Boardman-Pretty, T., Haidt, J. & Baron-Cohen, S. (2024) Moral foundations in autistic people and people with systemizing minds. Molecular Autism 15, 20. Available at: https://doi.org/10.1186/s13229-024-00591-8
Haydock, A., Harrison, L., Baldwin, K., & Leadbitter, K. (2024). Embracing gestalt language development as a fundamental neurodiversity-affirmative practice. Autism, 28(5), 1055-1059. Available at: https://doi.org/10.1177/13623613241234598
Long, H., Cooper, K., & Russell, A. (2024). ‘Autism is the Arena and OCD is the Lion’: Autistic adults’ experiences of co-occurring obsessive-compulsive disorder and repetitive restricted behaviours and interests. Autism, 0(0). Available at: https://doi.org/10.1177/13623613241251512
Marie Camin (2024) Purposeless? According to Whom? A Scoping Review of Potential Functions of Stimming in Autistic Adults. La Trobe University, Available at: https://www.mariecamin.com/qrcontact
Ridgway, K., Cooke, K., Demmer, D. H., Hooley, M., Westrupp, E., & Stokes, M. A. (2024). Camouflaging Autism in Pursuit of Friendship and Intimate Relationships: A Systematic Review. Autism in Adulthood. https://www.liebertpub.com/doi/10.1089/aut.2023.0160
Ryan, J., Brown, H. M., Borden, A., Devlin, C., Kedmy, A., Lee, A., Nicholas, D. B., Kingsley, B., & Thompson-Hodgetts, S. (2024). Being able to be myself: Understanding autonomy and autonomy-support from the perspectives of autistic adults with intellectual disabilities. Autism, 0(0). https://doi.org/10.1177/13623613241254432
Xinyue Peng, Tianbi Li, Guangfang Liu & Wei Ni, Li Yi. (2024) Enhanced neural synchronization during social communications between dyads with high autistic traits, Cerebral Cortex, 34 (13), https://doi.org/10.1093/cercor/bhae027
Also, https://captapnetwork.wordpress.com/2023/09/19/how-to-talk/ may be helpful for those following the research on better ways to talk about autistic people.
