Autism Research—What’s New in April
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.
What do autistic adults do?
Bury et al. (2024) asked nearly 2500 autistic adults about their daily activities, each year from 2015 to 2021. For example at the start of the project, 37% were in paid employment, with a further e.g. 6% self-employed and another 6% in other categories of employment. 13% were students or academics. 22% were volunteering. People could tick more than one box, so numbers will not add up to 100%. The supplementary tables give plenty of extra detail, by gender, age, employment sectors, etc.
Ann’s note: There is a repeated myth that autistic individuals are generally a ‘burden on society’ and cost society a fortune. In my view, it is very problematic to view people as a cost/burden, rather than as fellow human beings who bring their whole selves to the world. Such myths about overall cost and unemployment levels were originally based on very old information from young men in care settings. Other more recent data in the UK was based on studies done by phoning autistic people in the evenings, which is never a good idea for obtaining accurate data about autistic lives. Those who have worked all day may be far less likely to be able to answer the phone, for example. Good, therefore, to see this large piece of work which gives a broad, rich and deep set of information about hobbies, caring responsibilities, academic studies, retirement, homemaking, work, and much more.
Social Isolation and Loneliness in Middle Aged and Older Autistic Adults
Stewart et al. (2024) took a look at the lives of older autistic individuals. 428 adults age 40-93, 265 of these autistic, completed questionnaires about social connectedness, loneliness, and mental health. Table 2 in the article shows some significant differences between numbers and types of relationships for autistic and nonautistic people. Considerable loneliness is experienced by many, with a fair number having almost no family or friends to turn to in an emergency. We have had very little research about autistic people aged 40+, so this is a valuable resource that can guide organisations on the right questions to ask, and the right support services to commission.
What do we mean by socialising?
Prof. Bottema-Beutel (2024) asks if autism researchers have thought about the complexity of social situations, when describing how autistic people socialise. Do we mean everyday interaction, e.g. how people ask a question and deliver an answer, between two people? Do we mean relational, e.g. the social status of people and how that affects communication and being ‘heard’ in a setting? Do we mean going to an activity or event and being seen there or taking part in e.g. a card game with others? Do we mean following particular traditions and social-rule sets e.g. clubs and societies? Do we consider sociopolitical aspects, i.e. services who decide who gets communication resources such as Assistive communication methods?
This is an important paper, given that we are so often told that autistic people ‘lack’ social skills. Which alleged skills are lacking? In which contexts? Who decides?
Supporting Neurodivergent Nursing Students
Major and team (2024) have written a professional development article for the Nursing profession, talking about the strengths of neurodivergent Nurses, and how best to support them. This is good to see, after nearly 100 years of medical professionals assuming that the neurodivergent people were patients rather than colleagues.
Autistic experiences of menopause and midlife
Brady, Jenkins and team (2024) have produced this important paper about autistic experiences of midlife and menopause. Adding to other emerging papers on the experiences of middle aged and older autistic individuals, there is a wealth of information on a topic that affects hundreds of thousands of autistic individuals. Until now, autistic people have been left to struggle through this phase of life, with almost nothing known about how to support them. The team identified four themes: 1) Complexity, multiplicity and intensity of symptoms (2) Life experience and adversity converging at midlife (3) The importance of knowledge and connection and (4) Barriers to support and care.
“This research may help autistic people prepare for menopause and recognize symptoms earlier. Hearing about the experiences of others may let autistic people who struggle with menopause know they are not alone.”
Content warning : description of the experiences of People with a Learning Disability who have high support needs, and their families, in some hospital settings.
Hospitalisation and discharge for people with a severe learning disability
A much needed piece of work by Stock et. al (2024), asking families about the experiences they have had.
“Family members reported stories of abuse in hospital and parallel experiences of institutionalisation and trauma, resulting in long‐lasting impacts on themselves and their relative. Family members felt let down and undervalued by professionals. They described relief when their relatives moved out of hospital, but there were on‐going difficulties accessing the right support in the community and so stability felt fragile.”
Hospitals are meant to be places of healing. One must wonder how some go so very far from that path. Everyone involved in care settings for individuals with high support needs should reflect deeply on the findings, and be keen to work with individuals and their families to ensure that these experiences do not happen in the future.
Access to Attractions – What about Historic Sites?
Days out can add to quality of life for everyone, and many historic environments are enjoyable and informative places to visit. Ruiz-Rodrigo et al. (2024) look at how accessible historic sites were, for those with visible and invisible disabilities. An important look at the amount of preparation and adaptation that disabled/neurodivergent people do before visiting somewhere, and what factors make it possible to attend.
What do autistic people think about genetic testing?
Eleven autistic people gave their views about genetic testing for autism in this paper by Klitzman et al. (2024). Amongst their concerns were the potential for eugenics, and whether it might make society even more negative about autism and even more determined to enforce treatments on autistic individuals. They were generally cautiously in favour of genetics testing if it was going to be of genuine benefit to the autistic individual. With nearly all research monies being ploughed into medicalised testing of this kind, it is so important to hear from autistic individuals directly.
What should we target with our autism ‘interventions’?
Sulek and team (2024) asked autistic people, parents and professionals about what they did, and didn’t, think were appropriate targets for intervention for autistic children. Professionals, for example, were moving swiftly away from targeting autistic sensory behaviours such as forms of stimming (repeated movement or sound, etc), and also generally disapproved of enforcing ‘normal’ social skills at the expense of authentic autistic ways of socialising with one another. Well worth a read.
Neuroinclusive Schools
Good to see this new research by Rajotte et al. (2024), looking at how to focus attention on making the school a better place to be, not on forcing the neurodivergent children to never show distress. By creating better environments and processes, distress behaviour can lessen or cease. From the summary of the work:
“..to celebrate neurodiversity, and to provide safe and caring spaces…. harnessing passions and strengths, offering various options…collaboration between stakeholders to create more welcoming schools for neurodivergent students and their peers.”
References
Bottema-Beutel, K. (2024). Putting autism research in social contexts. Autism, 0(0). https://doi.org/10.1177/13623613241245642
Also worth noting the paper by Crompton and team which is linked in the reference section there, about how autistic social communication being highly effective in some situations.
Brady, M. J., Jenkins, C. A., Gamble-Turner, J. M., Moseley, R. L., Janse van Rensburg, M., & Matthews, R. J. (2024). “A perfect storm”: Autistic experiences of menopause and midlife. Autism, 0(0). https://doi.org/10.1177/13623613241244548
Bury, S. M., Hedley, D., Uljarević, M., Stokes, M. A., & Begeer, S. (2024). A repeated cross-sectional study of daily activities of autistic adults. Autism research : official journal of the International Society for Autism Research, Advance online publication: https://doi.org/10.1002/aur.3135
Klitzman, R., Bezborodko, E., Chung, W. K., & Appelbaum, P. S. (2024). Views of Genetic Testing for Autism Among Autism Self-Advocates: A Qualitative Study. AJOB Empirical Bioethics, 1–18. https://doi.org/10.1080/23294515.2024.2336903
Major R, Jackson C, Wareham J et al (2024) Supporting neurodivergent nursing students in their practice placements. Nursing Standard. doi: 10.7748/ns.2024.e12262 https://pubmed.ncbi.nlm.nih.gov/38616773/
Rajotte, E., Grandisson, M., Couture, M. M., Desmarais, C., Chrétien-Vincent, M., Godin, J., & Thomas, N. (2024). A Neuroinclusive School Model: Focus on the School, Not on the Child. Journal of Occupational Therapy, Schools, & Early Intervention, 1–19. https://doi.org/10.1080/19411243.2024.2341643
Ruiz-Rodrigo, A., Morales, E., Lakoud, M., Riendeau, J., Lemay, M., Savaria, A., Mathieu, S., Feillou, I. & Routhier, F. (2024). Experiencing accessibility of historical heritage places with individuals living with visible and invisible disabilities. Frontiers in Rehabilitation Sciences, 5, 1379139. https://www.frontiersin.org/articles/10.3389/fresc.2024.1379139/full
Stewart, G. R., Luedecke, E., Mandy, W., Charlton, R. A., & Happé, F. (2024). Experiences of social isolation and loneliness in middle-aged and older autistic adults. Neurodiversity, 2. https://doi.org/10.1177/27546330241245529
Stock, M., Mulholland, M., Cooper, V., Head, A., Prowse, S., Wellsted, D., Mengoni, S. E., Rhodes, L. & Ellis‐Caird, H. (2024). ‘The whole thing is beyond stress’: Family perspectives on the experience of hospitalisation through to discharge for individuals with severe learning disabilities and complex needs. British Journal of Learning Disabilities. https://onlinelibrary.wiley.com/doi/pdf/10.1111/bld.12595
Sulek, R., Edwards, C., Monk, R., Patrick, L., Pillar, S., & Waddington, H. (2024). Community Priorities for Outcomes Targeted During Professional Supports for Autistic Children and their Families. Journal of autism and developmental disorders, Advance online publication: https://doi.org/10.1007/s10803-024-06333-2
