Autism Research—What’s New in March
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.
The problem of defining ‘problem behaviour’
Prof. Kristen Bottema-Beutel and team (2024) consider the challenges of trying to intervene with ‘problem behaviour’ when there is no agreed definition of what this is. They found that only about 4 out of every 10 studies on ‘problem behaviour’ made an attempt to explain what ‘problem behaviour’ might be. There were some 67 different alleged ‘problem behaviours’ from autistic young people in the research papers studied, but most of these were stereotypical behaviours (often known as ‘stimming’) such as flapping of hands or rocking. As stimming is usually used by the person for regulation, and generally improves quality of life for them, it is usually not a ‘problem behaviour’. Fewer than half of the studies tried to work out why a person was behaving in a particular way. If we are describing allegedly evidence-based approaches to reducing ‘problem behaviour’, it is far from clear that enough evidence from research is meaningful. Again, deep reflection may be needed, along with genuine curiosity, caring and collaboration with the individuals concerned.
Co-producing ethics guidelines together with people with learning disabilities.
Much needed research from Bottomley et. al. (2024), with ten top recommendations for making sure that research happens ethically and collaboratively, led by researchers with learning disabilities. There is also an easy-read summary. There have been too many years of thinking that research is something that other people do to people with learning disabilities. It is so important to ensure that their voices, experience and skills are present at every stage.
Social skills training and autistic people
Plenty of very good interviews in this paper by Hull et.al (2024), with the positives of what went well, the challenges of what didn’t go so well, and some important questions about why only the autistic people get offered social skills training. Communication is a two-way thing (or more than two, in groups), so autistic social skills training needs to happen for nonautistic people too, so they can learn about our own autistic ways of socialising and communication. If it is always the autistic people who are singled out to have training, what does that say about us being seen as having deficits, rather than differences? Is it potentially stigmatising? Also, useful commentary about how important it is for training to be collaborative and personalised.
There is almost no research into the countless retirement age autistic people.
In some settings, teams are supporting individuals who are older and who are approaching, or past, retirement age. The new research by Davies and team (2024) shows that despite nearly 100 years of autism research, and countless thousands of autistic people reaching older ages across the globe, so far the research communities had studied just one autistic man approaching retirement age. This experienced team interviews a small number of autistic individuals about retirement, and offers is a good starting point for a much needed subject.
Likewise, new research out from Stringfellow and team (2024) looks at healthy ageing for autistic people. Reviewing research so far, they looked for papers on physical health, mobility, mental health, cognition/memory, and social connectivity. They found there were 35 relevant research articles. 57% only looked at one of those health areas. 23% looked at 2. 14% looked at 3. 6% looked at 4.
None looked at all 5 areas of healthy ageing.
Only three of the studies looked at our mobility needs as we age. They recommend a lot more research happens. We know almost nothing about older autistic people, and how to make their older lives liveable and joyful, rather than an endurance course leading to an untimely end. Good to see more focus on this now.
Dental Care and Autistic People
Pimentel et. al. (2024) reviewed existing research into dental care for autistic people. They noted that currently there are few specialised teams, a lot of inaccessible clinics, and often very unclear guidance for teams.
From wider research into this subject, there is also little focus on effective, kind communication with autistic people, obtaining meaningful consent or assent, or checking for harms from procedures used, e,g, trauma from mechanical or physical restraints. Unfortunately, it is clear that a number of research papers focus on using Applied Behaviour Analysis techniques, or restraints, to achieve autistic compliance with painful, overwhelming environments and procedures. There needs to be greater insight into the existence of better ways that are less likely to cause trauma and injury. The networks of autistic healthcare professionals, including autistic Dentists, are making some inroads into this much needed area.
“I’m dealing with a health care system that doesn’t get it”: Barriers and facilitators to inclusive healthcare for autistic adults
McLean et. al. (2024) interviewed 23 autistic adults about barriers to healthcare. Whilst this study was based in the USA, there is a lot of very useful information from these first-hand accounts.
Can parents accurately rate their child’s mental health? A look at how masking may make this more difficult.
Lei et. al. (2024) noted that it can be difficult for parents to accurately identify how anxious or depressed their autistic child is. They also considered whether the children were regularly masking (camouflaging) being autistic, and whether this made it harder for parents to spot when they were having difficulties. It did indeed make it more difficult. A lot of useful discussion about the pros and cons of having to mask, in society.
Changing the way we collaborate with autistic children and young people – an experience sensitive approach.
A definition of futility is doing the same thing over and over, getting nowhere, and still continuing to do the same thing. There is no doubt that many systems alleging to change autistic lives for the better have become ‘stuck’, with the same reports detailing the same challenges, and the same concerning outcomes. Changing the way we think about autistic people, and the way we engage in a truly caring, collaborative partnership with them, is vital.
“This neuroinclusive approach creates a culture of respect, honors the sovereignty of the person, prioritizes personalization of care based on collaborative decision-making, and enables practitioners to support well-being from an existential, humanistic view, grounded in acceptance of autistic diversity of being.”
A very good paper from McGreevy et. al. (2024), and much needed for all who work alongside autistic individuals.
Autism research – what’s actual evidence? Who decides the aims?
Many autism researchers have spent decades claiming they are unbiased, and their results are ‘evidence’. Evidence of what, though? No-one is unbiased. The respected partnership of Milton & Green (2024) question the assumptions. Whilst some of this is more technical, aimed at academic researchers, there is plenty in this editorial that is useful to a wider audience:
“The history of autism research and practice has been beset by controversy and expensive ‘dead-ends’….a lack of participation, poor ethics or a lack of informed consent, as well as how research priorities are often a poor match with community priorities... Essentially, what is often being critiqued is the very lack of power that participants have within the research process. With greater power-sharing from the outset, wrong turns and mishaps could be diverted away before vast sums of money are fritted away through researchers not checking the ‘face validity’ of their research aims and objectives.”
References
Bottema-Beutel, K., McKinnon, R., Mohiuddin, S., LaPoint, S. C., & Kim, S. Y. (2024). Problems with “problem behavior”: A secondary systematic review of intervention research on transition-age autistic youth. Autism, 0(0). https://doi.org/10.1177/13623613241229159
Bottomley, M., Bradley, J., Clark, L., Collis, B., Srdanovic, B. D., Farnsworth, V., Ferguson, A., Goodley, D., Fox, A., Hayden, N. K., Lawthorn, C., Lawthron, R., McLean, R., Middleton, I., Owen, A., Prothero, M., Rice, S., Richards, S., Runswick-Cole, K., Scargill, K., Shankar & Wood, T. A. (2024). Co‐producing ethics guidelines together with people with learning disabilities. British Journal of Learning Disabilities. https://onlinelibrary.wiley.com/doi/full/10.1111/bld.12590
Davies, J., Matthews, R., Romualdez, A. M., Pellicano, E., & Remington, A. (2024). “Retirement Is One Hell of a Change”: Autistic People's Experiences of Retiring. Autism in Adulthood. https://www.liebertpub.com/doi/10.1089/aut.2023.0155
Hull, L., Rane, S., Lee, S. H. L., & Sedgewick, F. (2024). “Just Ask What Support We Need”: Autistic Adults' Feedback on Social Skills Training. Autism in Adulthood. https://www.liebertpub.com/doi/10.1089/aut.2023.0136
Lei, J., Leigh, E., Charman, T., Russell, A., & Hollocks, M. J. (2024). Exploring the association between social camouflaging and self- versus caregiver-report discrepancies in anxiety and depressive symptoms in autistic and non-autistic socially anxious adolescents. Autism, 0(0). https://doi.org/10.1177/13623613241238251
McGreevy, E., Quinn, A., Law, R., Botha, M., Evans, M., Rose, K., Moyse, R., Boyens, T., Matejko, M., & Pavlopoulou, G. (2024). An Experience Sensitive Approach to Care With and for Autistic Children and Young People in Clinical Services. Journal of Humanistic Psychology, 0(0). https://doi.org/10.1177/00221678241232442
McLean, K. J., Haas, M., Koenig, J., Horvath, M., Vigil, M., Werner, N. E., & Bishop, L. (2024). “I’m dealing with a health care system that doesn’t get it”: Barriers and facilitators to inclusive healthcare for autistic adults. Autism, 0(0). https://doi.org/10.1177/13623613241236380
Milton, D. E., & Green, J. (2024). Theorising autism. Autism, 0(0). https://doi.org/10.1177/13623613241235786
Pimentel Júnior, N. S., de Barros, S. G., de Jesus Filho, E., Vianna, M. I. P., Santos, C. M. L., & Cangussu, M. C. T. (2024). Oral health-care practices and dental assistance management strategies for people with autism spectrum disorder: An integrative literature review. Autism, 28(3), 529-539. https://doi.org/10.1177/13623613231193529
Stringfellow, M.k., Fields, N. L., Lee, K., Anderson, A.k., Brokaw, E. (2024). Healthy Aging and Older Adults with Autism: A Scoping Review, The Gerontologist, https://doi.org/10.1093/geront/gnae026
