Autism Research—What’s New in December 2023?
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.
Autistic Body Image
There isn’t a lot of research yet on this subject, so this is a useful addition. Longhurst, Aspell, Todd and Swami (2023) interview autistic people to find out more about how they view their bodies. Six main themes emerged, for body image: “…body connection, body acceptance, appreciating body functionality and neurodivergent strengths, having a body-positive protective filter, taking care of the body, and body and appearance neutrality”. In particular, worth noting the findings about the sensory aspects of autistic body image, which may be a different focus from that of many nonautistic people.
Learning Disability – how useful is the EQ-SD-Y-5L questionnaire for caregivers, when trying to describe their child?
Blackmore et al.’s (2023) questionnaire for caregivers looks at mobility, self-care, ‘usual activites’, pain/discomfort, and anxiety/depression. Caregivers were concerned that it was too simple, and did not allow them to properly describe their child. They were concerned, for example, about how to describe someone else’s pain, anxiety or depression with any meaningful level of accuracy. Some good ideas for developing a better and wider set of questions to help young people with a learning disability, with their caregivers, describe daily life and what they can do or not do.
Autistic people may be more ethical
“…autistic employees…are more likely to identify and report inefficient processes and dysfunctional practices when they witness them. These preliminary findings suggesting potential benefits of neurodiversity in the workplace are promising.” Whether in a workplace, a voluntary setting, a community, school or otherwise, autistic people are likely to be thinking about how to improve things, and how to report faulty systems and wrongdoing. This kind of article by Hartman et al. (2023) is vital in challenging the belief of autism as ‘deficit’.
“Far away from home” - research about placing autistic young people in mental health settings a long way from family.
The team (Holland et al., 2023) found that 38% were admitted more than 100 miles from home and 8% more than 200 miles. This is a very significant problem, and one that can lead to equally significant Human Rights breaches for family life, and poor outcomes in terms of stress on the patient and their family. Clinical implications and potential solutions are discussed. Well worth a read.
Are autistic drivers worse than other drivers? No.
A general warning that the authors (McManus et al., 2024) describe autism in very negative ways, and their opening summary isn’t supported by the evidence they set out. They asked autistic drivers about what’s happened in their driving history, and compared this to drivers with ADHD and drivers without a diagnosis of either thing. “There were no significant differences between ASD (autistic) and TD (nonautistic) drivers in reported risky driving behaviors and errors”.
Some will remember a Government advisory group who decided to ask GPs to decide if autistic drivers with existing driving licences were competent to drive. There was a considerable campaign to challenge this, of which I was a leader, and this was overturned. Not least because GPs don’t have time to re-examine endless thousands of autistic drivers to guess how good they are at driving. Since then, I’ve kept a watchful eye to research, so it’s good to see a steady stream of research finding that people with driving licences are generally safe to drive. No great surprise there, since that’s what the driving test is for.
Content warning: restraint
Restraint of autistic children in general hospitals
Calabrese, Sideridis and Weitzman (2023) found that autistic children are far more likely to show distress behaviour in hospital settings, and far more likely to be restrained. Their reflections on this are powerful, and include the following:
“Because autistic people often have invisible disabilities or disabilities that are less frequently understood, they may get less support in health care settings. There are ongoing efforts to improve access to health care by providing accommodations, environmental modifications, and staff training to support children with ASD and prevent restraint and foregone care. Hospital staff may have an ableist mindset that overvalues the typical and undervalues the neurodivergent. Hospitals often engage in medical or structural ableism that allows large systems to maintain discriminatory processes, policies, and institutions that favor able-bodied people”
The team make a number of recommendations and observations which will be helpful to those in general hospital and Primary Care settings, who may be unaware of autistic sensory, pain and predictability needs. Especially important to prevent the implementation of potentially unsafe, painful and/or traumatising restraints, when most can be avoided with better training, planning and understanding.
The ‘Reading the Mind in the Eyes’ (RMET) test does not work and is no longer recommended?
The paper gives an example of the test, in which people are shown photographs of eyes and asked to guess the emotion that the person is displaying.
“Overall, our results suggest a troubling conclusion: the validity of RMET scores (and the research findings based on them) are largely unsubstantiated and uninterpretable.”, say the research team (Wendy et al. 2023) investigating this very common test given to autistic people. The test is also given to a very wide range of other groups, including those with dementia, depression and eating disorders. “We advise against further use of the RMET and urge considerable caution when interpreting existing findings based on RMET scores”, the authors state.
Please note, if this test is one of your standard repertoire for assessments.
Autistic young children may be less aggressive than others?
Another common assumption is that autistic children are aggressive. Sivathasan et al. (2023) tested this. “In the full model, autism diagnosis became significant in the opposite direction as expected, with autistic children having slightly lower aggression scores”. Other factors were making some of the autistic children show distress behaviour, not autism itself, it seems. Looking at the information given, only about 3 out of every 100 of young autistic children were lashing out at other children (not siblings) on a regular basis without an apparent good reason (e.g. self defence).
It’s the autistic children creating the most noise or disruption who get noticed, and often people assume that the other e.g. 97 out of every 100 must be just the same. Vital, of course, that all autistic children have the best possible chance to avoid becoming distressed, e.g. because of undiagnosed pain conditions, sensory overwhelm, bullying etc.
Autistic Flow
Autistic focus and expertise-forming is so often described in negative ways, and assumed by some groups to be in need of behaviour-enforcement to ensure we do not specialise. The researchers (Rapaport et al. 2023) set out the evidence for the positives of autistic ‘flow’, as well as a realistic discussion about the challenges of over-focusing at times. This top team explains how monotropism helps us understand the deep concentration of many autistic minds, and how that same focus can lead to considerable joy and thriving.
A commentary on children’s books about autism: What messages do they send about neurodiversity?
Venker and Lorang (2023) looked at a wide variety of children’s books which describe autism or autistic characters. Some were neurodiversity-affirming and positive. Others, not. The team reflect on the problematic messages in some of the books around autistic ‘superpowers’ being a way to get acceptance. What if a child doesn’t have an amazing ability? There is a recommendation for more extensive research on this subject, given the clear need to direct autistic children towards accurate and useful portrayals and information, rather than materials based on outdated myths or potentially ableist principles.
References
Blackmore, A. M., Mulhern, B., Norman, R., Reddihough, D., Choong, C. S., Jacoby, P., & Downs, J. (2023). How Well Does the EQ-5D-Y-5L Describe Children With Intellectual Disability?: "There's a Lot More to My Child Than That She Can't Wash or Dress Herself.". Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research, Advance online publication available at: https://doi.org/10.1016/j.jval.2023.11.005
Calabrese, M. E., Sideridis, G., & Weitzman, C. (2023). Physical and pharmacologic restraint in hospitalized children with autism spectrum disorder. Pediatrics, 153(1). Available at: https://publications.aap.org/pediatrics/article/doi/10.1542/peds.2023-062172/196190/Physical-and-Pharmacologic-Restraint-in?autologincheck=redirected
Hartman, L. M., Farahani, M., Moore, A., Manzoor, A., & Hartman, B. L. (2023). Organizational benefits of neurodiversity: Preliminary findings on autism and the bystander effect. Autism Research, 16(10), 1989-2001. Available at: https://onlinelibrary.wiley.com/doi/10.1002/aur.3012
Holland, J., Roe, J., Guo, B., Dasilva-Ellimah, M., Burn, A. M., Dubicka, B., Ford, T., Wagner, A. P., Nazir, S., James, A., Morriss, R., Sayal, K., & CAPSS Scientific Committee (2023). 'Far Away from Home': adolescent inpatient admissions far from home, out of area or to adult wards: a national surveillance study. BMJ mental health, 26(1). Available at: https://doi.org/10.1136/bmjment-2023-300843
Longhurst, P., Aspell, J., Todd, J., & Swami, V. (2023). "There's No Separating My View of My Body from My Autism": A qualitative study of positive body image in autistic individuals. Body image, 48, 101655. Advance online publication available at: https://doi.org/10.1016/j.bodyim.2023.101655
McManus, B., Kana, R., Rajpari, I., Holm, H. B., & Stavrinos, D. (2024). Risky driving behavior among individuals with Autism, ADHD, and typically developing persons. Accident; analysis and prevention, 195, 107367. Available at: https://doi.org/10.1016/j.aap.2023.107367
Rapaport, H., Clapham, H., Adams, J., Lawson, W., Porayska-Pomsta, K., & Pellicano, E. (2023). “In a State of Flow”: A Qualitative Examination of Autistic Adults' Phenomenological Experiences of Task Immersion. Autism in Adulthood. Advance online publication available at: https://www.liebertpub.com/doi/full/10.1089/aut.2023.0032
Sivathasan, S., Eldeeb, S., Northrup, J. B., Antezana, L., Ionadi, A., Wakschlag, L. S., & Mazefsky, C. A. (2023). Early Childhood Aggression in Autistic and Non-Autistic Preschoolers: Prevalence, Topography, and Relationship to Emotional Reactivity. JAACAP Open. Advance online publication available at: https://www.sciencedirect.com/science/article/pii/S2949732923000649
Venker, C. E., & Lorang, E. (2023). A commentary on children's books about autism: What messages do they send about neurodiversity?. Autism Research. Available at: https://onlinelibrary.wiley.com/doi/10.1002/aur.3081
Wendy C. Higgins, David M. Kaplan, Eliane Deschrijver, Robert M. Ross,(2023) Construct validity evidence reporting practices for the Reading the mind in the eyes test: A systematic scoping review. Clinical Psychology Review, Advance online publication available at: https://doi.org/10.1016/j.cpr.2023.102378
