Autism Research—What’s New in January 2024
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.
Neurodiversity Special Issue of a Journal
The Psychologist journal (British Psychological Society) is running a neurodiversity issue for their January/February Edition. An excellent range of papers within it, including ones on the intersectionality of autism and ADHD, exploring lifeworlds within the autistic community, education, employment, learning disability, forensic services, mental health and whether ‘vulnerability’ is part of autism, or imposed on us.
Do autistic people struggle with planning things (‘executive function’)?
This new paper by Kenny, Remington and Pellicano (2024) challenges what we thought we know about the abilities of autistic people to plan things. It’s been assumed that we were bad at planning and organising, and switching between tasks. The team interviewed autistic young people and their parents, to get a better set of insights on this. They found it was a variable, depending on which task and the circumstances around it. They also found that some were simply solving the situation in ways the teams weren’t measuring. A genuinely different way of planning and navigating life, not a deficit, potentially. Well worth reading.
Autistic people setting and achieving their own goals, by creating their own social story
In this paper by Camilleri, Maras and Brosnan (2024), various autistic adults create their own social story, describing how they can achieve a goal that is meaningful to them. Very often, ‘social stories’ have been used to enforce normalisation of social skills, rather than being used as a genuine tool to empower autistic lives and create outcomes that are meaningful for the person. Good to see this sort of research, showing the potential power of truly person-centred approaches.
Exploring How Nonbinary Autistic Adults Experience Gender
Lovely to see this paper (Peachey and Crane, 2024), exploring the experiences of Nonbinary autistic adults, which is a common gender identity in autistic communities. Very few teams have training on this as yet.
We recommend that nonautistic people are given improved education on nonbinary autistic identities; supporting autistic people to understand their differences and facilitating positive identity development within queer spaces. Creating autistic-led community groups is furthermore key, due to the linguistic and embodied complexities of autistic gender identities.
The best things about autistic pupils
This paper (Mirenda et.al, 2024) explores the best qualities of autistic pupils, instead of focusing on a relentless narrative of negativity. Positive qualities of many of the pupils included curiosity, a love of learning, perseverance, humanity and kindness, friendliness, and a great sense of humour. From my own decades of work with and alongside autistic people of all ages, I can only agree. We need a society that builds on strengths instead of exhausting the children, a point that the authors make.
Making noisy environments easier for communication
Good to see a team (Pillonetto, Queiroz and Coelho 2024) thinking about how to make it easier for autistic people to hear and communicate well in busy, noisy spaces. Most conversations happen in such settings, including café, restaurant, school, university and workplace environments. Far too little has been known about what can help. Whilst technical, it focuses on how technology can help filter out background noises, and be personalised to fit individual needs. It would be good to see other research looking at existing good quality noise-cancelling headphones that can enable some of this to happen, by tuning out particular sorts of noise automatically.
Quality of life for autistic women
Paricos et al (2024) looks at just this and these are their findings:
Results: Findings indicate four main themes that represent routes to good Quality of life (QoL): positive sense of self; feeling supported; autonomy; inclusion.
Participants noted that being autistic itself was not a determinant of reduced QoL. Instead, participants’ QoL was underpinned by the extent to which participants understood themselves, others understood and accommodated their needs, and the person-environment fit.”
The right language, regarding autism? Global Survey
Keating et al (2022) published a useful piece of research on preferred terms for autism, and for nonautistic people. Over 650 autistic participants from a variety of countries. Figure 2 in the paper makes for some interesting discussions. I think it’s fair to say that “disease” “deficits” and “healthy controls” are most definitely not a wise choice of language, for researchers.
Nonautistic people may tend not to think of autistic people as less human?
Content Warning: Dehumanisation of Autistic people
Kim, Cheon and Kim (2024) asked a very large sample of people to rate how human they thought autistic people are, using a variety of measures. It’s fair to say that the results are rather dispiriting, and the authors are clear that there is much more work to be done to improve education and understanding of autistic people.
Autistic Gynaecological Difficulties are More Common
Ames et. al (2024) looked at a very large sample of autistic individuals, and found some concerning results about gynaecological difficulties. Not only were they more common, but it appears that the individuals were receiving less support for them.
Autistic adolescents and adolescents with other developmental disabilities were significantly more likely to have diagnoses of menstrual disorders, polycystic ovary syndrome, and premenstrual syndrome than typically developing adolescents. These two groups also were less likely than typically developing peers to visit the OB/GYN or to use any form of hormonal contraception, including oral contraception, hormonal implants, and intrauterine devices.
It is vital that healthcare providers think about this topic, and enable doable reproductive healthcare for autistic people. Strongly recommended for every healthcare team involved in autistic lives, given that untreated conditions may be a reason for what they term ‘challenging behaviour’. It is so important to consider whether the person is anaemic, in pain, exhausted, or trying to cope with other significant related health situations.
References
Ames, J. L., Anderson, A. c., Cronback, E., Lee, C., Onaiwu, M. G., Vallerie, A. M and Coren, L. A. (2024) Reproductive Health Care in Adolescents with Autism and Other Developmental Disabilities. American Journal of Obstetrics and Gynaecology. Advanced online publication available at: https://www.sciencedirect.com/science/article/pii/S0002937824000139
Camilleri, L.J., Maras, K. and Brosnan, M. (2024) Self-Set Goals: Autistic Adults Facilitating Their Self-Determination Through Digitally Mediated Social Stories. Autism in Adulthood. Advance online publication available at: https://doi.org/10.1089/aut.2023.0063
Keating, C. T., Hickman, L., Leung, J., Monk, R., Montgomery, A., Heath, H., & Sowden, S. (2022). Autism-related language preferences of English-speaking autistic adults across the globe: A mixed methods investigation. Autism Research. Available at: https://doi.org/10.1002/aur.2864
Kim, S.Y., Cheon, J.E and Kim, Y-H. (2024) A Cross-Cultural Examination of Blatant and Subtle Dehumanization of Autistic People. Journal of Autism and Developmental Disorders. Available at: https://link.springer.com/article/10.1007/s10803-023-06217-x#citeas
Kenny, L., Remington. and Pellicano.E. (2024). Everyday executive function issues from the perspectives of autistic adolescents and their parents: Theoretical and empirical implications. Autism. Advance online publication available at: https://doi.org/10.1177/13623613231224093
Mirenda, P., Zaidman-Zait, A., Tombeau Cost, K., Smith, I. M., Zwaigenbaum, L., Duku, E., Kerns, C., Georgiades, S., Vaillancourt, T., Elsabbagh, M., Bennett, T. and Szatmari, P. (2024) Educators Describe the “Best Things” About Students with Autism at School, Journal of Autism and Developmental Disorders, 54. Available at:
https://doi.org/10.1007/s10803-022-05761-2
Paricos, A., Sturrock, A., Twomey, K., and Leadbitter, K. (2024). “I’m not mad, bad, and dangerous … simply wired differently”: Exploring factors contributing to good quality of life with autistic women. The University of Manchester Advance online publications available at: https://pure.manchester.ac.uk/ws/portalfiles/portal/291694371/Paricos_et_al_preprint.pdf
Peachey, M. and Crane, L. (2024) “I Don't Understand Their Sense of Belonging”: Exploring How Nonbinary Autistic Adults Experience Gender. Autism in Adulthood. Advance online publication available at: https://doi.org/10.1089/aut.2023.0071
Pillonetto, M., Queiroz, A. and Coelho, R. (2024) Intelligibility Enhancement of Acoustic Noisy Speech for Autism Spectrum Disorder Condition. arXiv. Available at: https://arxiv.org/pdf/2401.11832.pdf
The British Psychological Society (2024) Neurodivergence. Change, Complexity and Challenge. The Psychologist. January/February 2024. Available at: https://cms.bps.org.uk/sites/default/files/2024-01/psy0124shop.pdf?fbclid=IwAR0NZwST5aBgeyuQ5b3yj9NWMMFWs9oGd7zMAWOUcq0gg4sPhn4oeGCw3cY
