Autism Research—What’s New in October
In this month’s research roundup, Ann Memmott 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.
Content warning for enforced medical intervention
Driving Ability
Mercier and team looked at driving ability for Autistic individuals, by studying past research into this. Notably , they found that the past research looked at hardly any adults over 30, the participants were nearly all males, and nearly all testing was done in simulators rather than real-life driving. Simulator testing often involves very different sensory and social factors to real life driving, but few research teams have thought about the impact of that on the test results for autistic people.
Those already found to be competent, via the usual driving tests, are indeed competent. That’s the purpose of the tests. We have many thoroughly competent drivers amongst our Autistic Police Officers, Ambulance Drivers, Firefighters and HGV drivers, to name a small number of roles where autistic driving skills can be found.
Mental health, anxiety, Autistic youth
The research team explored what works, and what doesn’t, for Autistic mental healthcare.
…future directions for anxiety treatment programs tailored for Autistic youth include building more time into the intervention sessions to build rapport, incorporating autistic youth’s preferences into provider matches, and providing families with more psychoeducation.
Does Autistic masking indicate reduced quality of life? Yes.
The team decided to test twins for masking behaviour (‘camouflaging’), in which people try to hide elements of their identity, in order to avoid e.g. bullying or exclusion. There were 140 individual twins including 22 Autistic participants. All twins provided self-reports of masking and their quality of life. Autistic participants, particularly females, displayed increased masking behaviours compared to non-autistic participants. The more people masked, the more likely it was that their quality of life was poor.
Our results strengthen previous claims purporting camouflaging behaviors as a risk factor for reduced quality of life.
Interventionists continue to promote the idea that teaching Autistic people to mask being Autistic is better for their quality of life. This kind of research is very much needed, to challenge this misunderstanding.
Autistic people joining the mental health professions - what happens?
There are plenty of Autistic people working as mental health professionals of all kinds. The research team interviewed ten of them, revealing,
…experiences of ableism from individuals and systems, the emotional and cognitive toll of living as an Autistic person in graduate study…. Our participants also discussed how their Autistic characteristics positively impacted their work with clients. Factors such as (a) deep, focused interest in clients and psychological science and (b) extreme empathy and c) pattern recognition appeared multiple times, which participants said helped them connect to clients—especially Autistic clients.
Some good ideas for improving the system and ensuring people are well supported.
Brain differences in Autistic children – The links between different sensory processing, and very reasonable anxiety when there are unknown events ahead?
Good to see this research team looking at the difference in brain design for Autistic people, and how those impact sensory experiences & anxiety. An Autistic child dreading sensory overload is likely to be keen to find out what is about to happen to them. It helps them prepare themselves for the chances of overwhelm, or might maybe help prevent it altogether. Unfortunately, this very reasonable approach has often been portrayed as an unreasonable ‘intolerance of uncertainty’ and equally unreasonable anxiety. The standard interventions are often based on the incorrect idea that Autistic children should learn to be flexible, and can be taught this by various coercive techniques. The end results have not generally been good, it is fair to say. The team make it clear that there are often brain structure differences involved in needing certainty on what’s ahead. We need to work towards a much better set of understandings and supports for Autistic children who need to avoid sensory overwhelm, and a better understanding of why anxiety about overwhelm is very rational. There is a lot more research to be done in this field, but this paper is well worth a read.
Do Autistic people have greater likelihood of vision difficulties? Yes.
How much of Autistic ‘behaviour’ or seeming difficulty with schooling or completing tests, etc, could be related to difficulties with vision? This study looked at past research on Autistic people. They found evidence of increased strabismus, where the eyes look in different directions. They also found greater chance of being short sighted or long sighted, more difficulties seeing how far away something was (stereoacuity), more difficulties with colour-blindness and with light contrast, and differences in the thickness of the back surface of the eye (retina).
It's vital to find a good Optician who can build a trusted relationship with Autistic children, young people and adults, and provide or organise an excellent set of tests for these factors. It also shows how important it is for those involved in optical health to have excellent Autism training, so that they are aware of the potential difficulties for the (likely) 1 in 30 of their patients, and how to make their processes Autism-friendlier.
Autism Alert Cards
A reasonable number of Autistic people carry Autism information cards, which can be handed to people to explain our needs or our behaviour. This paper takes a look at how, why, where and when people are using these, and what the results are. Many positive results, but it’s clear that the card is only as good as the Autism training that the receiver has had: Some experience outright dismissal or ableism when using the card, including some worrying accounts of what happened when the cards are shown to some healthcare professionals. Lots to think about in this.
Does exercise ‘improve’ Autistic social skills?
Content warning for enforced medical intervention
The researcher looked through past research papers, and decided that exercise improves Autistic children’s social skills.
Out of interest, I looked at a recent research paper they had relied on for this conclusion, Yang et al., 2021. Yang’s team had taken Autistic children age 3-6, deprived them of sleep, given them strong sedation via an enema and put them into an MRI scanner. In the following days the team made them participate in basketball training for 40 minutes a day, five days a week, for twelve weeks. At the end of this, they repeated the MRI process again. Then, they asked the parents if the children’s social skills had improved, using measures designed to test whether the children no longer appeared to be Autistic (e.g. not stimming). The children did not assent to any of this, and there was no independent evaluation of social skills, nor long term follow up, it seems. There was also no testing for adverse effects from any of this extraordinary testing process, it would appear.
Could parents who are that heavily invested in something ‘working’ be motivated to tell researchers that it worked? Could children exhausted from all of this be too tired to stim? Could the process of sedating the child via enemas have an impact on their behaviour? We do not know, as the researchers did not test for these factors. Other papers about exercise and social skills that Koh relied on included one by Haghighi et al., 2023, who made eight Autistic children exercise a lot, and asked their parents and teachers whether they appeared less Autistic afterwards. Again, how robust is this, as a method, and how does this match with Autistic aims for life quality?
Always check underlying data in any study for good, robust, ethical approaches that include checks for harms from the process. Always check that allegedly desired outcomes align with those desired by Autistic people, and are co-produced with Autistic people in good and meaningful ways.
A Positive Behaviour Support intervention for Autistic children
Rivard and team asked a group of parents to comment on a Positive Behaviour Support intervention for their Autistic children (average age 4.6). There is no mention of the children being asked for, or assessed for, assent to the process. Nor is there mention of how the children were assessed for any discomfort or harmful effects from the process. There is no discussion of Human Rights, nor mention of inclusion of autistic perspectives in the study design or implementation. The children’s voices are not heard anywhere within the paper.
The team rely on previous work, primarily Rivard’s 2021 study of the same intervention. In this, 35 children aged 4 were assessed on the Behaviour Problem Inventory BPI-01 (from 2001). This tests e.g. whether the children use less stimming than before (e.g. flapping, rocking). Again, there is no mention of the children’s assent, nor any commentary on how the children were assessed for any harms from the process. There is again no mention of Human Rights, nor input from any Autistic individuals into study design and implementation. The children’s voices are unheard in this paper also. Parents raised concerns about potential ‘discomfort’ for their child, but this is not explored further.
The researchers believe their work has social validity. It is not clear who they asked, in the Autistic population, for confirmation of this.
References
Cardon, G., Tindall, K., & Rojas, D. Behavioral and Neural Interrelationships of Sensory Difficulties, Intolerance of Uncertainty, and Anxiety in Autistic Children. Intolerance of Uncertainty, and Anxiety in Autistic Children.
Dabbs, C. R., Hutchins, C. H., Baird, R., Scaer, A. J., Kosanovich, S. E., & Spitler-Nigh, B. (2024). Unmasking Bias: Autistic Perspectives in Mental Health Training. Autism in Adulthood.
Delgado, D., LaPoint, S.C., Simmons, G.L. et al. “He Just Wants Someone to Hear Him and Listen to Him”: Barriers and Facilitators to Autistic Youth with Anxiety Receiving Quality Mental Healthcare. J Autism Dev Disord (2024). https://doi.org/10.1007/s10803-024-06574-1
Edwards, C., Love, A. M., Flower, R. L., Ying Cai, R., & Gibbs, V. (2024). 'Just knowing it's there gives me comfort': Exploring the benefits and challenges of autism alert cards. Autism : the international journal of research and practice, 13623613241286025. Advance online publication. https://doi.org/10.1177/13623613241286025
Koh S. H. (2024). Analyzing the influence of physical exercise interventions on social skills in children with autism spectrum disorder: insights from meta-analysis. Frontiers in psychology, 15, 1399902. https://doi.org/10.3389/fpsyg.2024.1399902
Mercier, A., Sherrod, G., Ennis, R. et al. The Driving Profile of Autistic Drivers and Their Driving Experiences: A Systematic Review. J Autism Dev Disord (2024). https://doi.org/10.1007/s10803-024-06586-x
Perna, J., Bellato, A., Ganapathy, P.S. et al. Association between Autism Spectrum Disorder (ASD) and vision problems. A systematic review and meta-analysis. Mol Psychiatry 28, 5011–5023 (2023). https://doi.org/10.1038/s41380-023-02143-7
Remnélius, K.L., Neufeld, J., Isaksson, J. et al. Does Camouflaging Cause Reduced Quality of Life? A Co-Twin Control Study. J Autism Dev Disord (2024). https://doi.org/10.1007/s10803-024-06583-0
Rivard, M., Grenier-Martin, J., Mello, C. et al. Implementing a Positive Behavior Support Program for Young Children with Autism in Public Agencies: A Social Validity Evaluation from Parents, Practitioners, and Administrators. J Autism Dev Disord (2024). https://doi.org/10.1007/s10803-024-06590-1
Rivard, M., Mello, C., Mestari, Z., Terroux, A., Morin, D., Forget, J., ... & Argumedes, M. (2021). Using prevent teach reinforce for young children to manage challenging behaviors in public specialized early intervention services for autism. Journal of Autism and Developmental Disorders, 1-19. https://link.springer.com/article/10.1007/s10803-020-04856-y
Yang, S., Liu, Z., Xiong, X., Cai, K., Zhu, L., Dong, X., et al. (2021). Effects of minibasketball training program on social communication impairment and executive control network in preschool children with autism spectrum disorder. Int. J. Environ. Res. Public Health 18:5132. doi: 10.3390/ijerph18105132 https://pubmed.ncbi.nlm.nih.gov/34066139/
