Autism Research—What’s New in February
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.
Are autism screening tests accurate? What about self-identifying as autistic?
Sturm and team (2024) have checked whether the autism screening test known as RAADS-R is accurate. Testing it on over 800 autistic individuals, they discovered that, generally, people who were fairly confident that they were autistic were indeed autistic. They also discovered that autism could be reliably detected with only two sets of questions – around sensory differences, and around the baffling matters of social interactions with most other people. Worth reading, especially if encountering concerns about whether self-identity as autistic can be valid.
How well do Applied Behaviour Analysis teams work with healthcare Professionals such as Occupational Therapy, Psychology, etc?
Bowman and team (2024) asked 166 healthcare professionals about their experiences of working with Applied Behaviour Analysis (ABA) teams. The professionals came from a variety of fields, including Speech & Language specialists, Occupational Therapists, Social Workers, Psychologists and Teachers. The research team noted a number of positives, including good collaborative skills from some, but also there were a number of concerns expressed, including commentary around a lack of expertise to practice in the fields which ABA claims knowledge, and a fair number of ABA team members who refused to co-operate with the professionals. If you are in a setting that is being asked to work with ABA teams, it is worth sourcing this paper.
The importance of autistic identity
Davies and team (2024) looked at autistic identity, noting,”… positive Autistic identity was associated with improved mental health and wellbeing. Peer support and/or self-directed support resources may be valuable mechanisms for supporting Autistic people to cultivate a positive Autistic identity.” A very useful paper for anyone who has concerns about whether identity as an autistic person is indeed of value. The team recommend further research takes place into the benefits of autistic identity for subgroups, for example Black autistic women and girls, and autistic people with a learning disability.
The links between autism and central sensitivity syndrome (migraine, fibromyalgia, IBS etc)
Grant and team (2024) examine the links between autism and central sensitivity syndrome conditions, including migraine, fibromyalgia, irritable bowel syndrome (IBS), and myalgic encephalomyelitis (ME/CFS). An important preprint paper for all involved in autistic lives, as autistic people’s distress, pain or loss of function is often assumed to be part of autism. It helps illustrate how important it is to test for co-occurring conditions.
Content warning: suicide
Autistic People and Suicidality
More good research happening on this vital subject. Bentum and team’s (2024) results show that the majority (80%) of the sample (N = 1164) had thought about or attempted suicide in their lifetime. Factors include loneliness, higher numbers of autistic traits and diagnoses of e.g. anxiety or depression.
Autistic children – what are good goals, according to autistic people, caregivers, and professionals?
A large number of adults were asked to comment on how important particular approaches are, for autistic children. Chazin et al (2024) divided them into autistic adults, caregivers, and professionals, whilst acknowledging there are overlaps. There were some fascinating differences between the groups. Their conclusions: “…(a) respecting autistic culture and characteristics in selecting goals; (b) considering social, emotional, and psychological needs in selecting procedures; and (c) individualizing goals, learning contexts, and procedures based on the child’s perspectives and unique needs.” In my view, this is a very important piece of research, not least because the team come from a behaviourist background where targets are often the opposite of those desired by autistic people. Worth seeking the full paper for a good read.
Using Augmentative and Assistive Communication (AAC) – What supports communication partners of people with a severe/profound learning disability?
Hanley et al. (2024) recommend a focus on communication partners’ beliefs, attitudes, expectations & knowledge, as well as how well they are resourced to achieve a useful outcome, e.g. training, support and time. They also stress how important it is for communication partners to recognise the person’s attempts to communicate, rather than see ‘bad behaviour’ or miss the signs completely. Good to see research focusing on this vital topic.
Autistic people who are nonspeaking (mouth-words), and use of technology for typing words.
Another potentially useful paper, this one from Jaswal and team (2024). When testing nonspeaking autistic people, and those with very limited speech, many of them were far more able to guess letters and sequences of letters than their professionals realised. The researchers are keen to see more nonspeaking autistic people offered assistive technology and taught how to use it, rather than teams assuming that nonspeaking = illiterate and unable to learn.
Autistic people and wellbeing
Najeeb and team (2024) looked for autism-affirming papers that focused on autistic wellbeing. Somewhat alarmingly, they found hardly any until 2016. They note that nearly all autism research focuses relentlessly on negative things. Very good to see a paper actively looking for research into autistic wellbeing, therefore. If we are serious about transforming autistic lives, this subject is fundamental to that success.
Assessment and Treatment of Post Traumatic Stress (PTSD) in Autistic People
A very useful paper from Quinton, Happé, Rumball, Danese and Ali (2024). We know too little about how to assess PTSD in autistic people, and too little about how to treat it. Most ‘behaviour’ is assumed to be part of autism, to date. The team’s conclusion is that, “Untreated, PTSD has a profound impact on an individual’s psychological wellbeing. …trauma-exposed autistic individuals display more severe PTSD symptoms, …it is crucial that future research validates PTSD symptom assessment tools, explores unique challenges and manifestations of trauma-related symptoms in autistic individuals, and involves the autistic community to understand research priorities and views around experiencing PTSD as an autistic person. This will ultimately lead to effective ways to diagnose and address PTSD in autistic children and adults.” Arguably vital reading for all involved in mental health and general care for autistic people.
References
Bentum, J. van, Sijbrandij, M., Huibers, M., & Begeer, S. (2024). Occurrence and predictors of lifetime suicidality and suicidal ideation in autistic adults. Autism, 0(0). Available at: https://doi.org/10.1177/13623613231225901
Bowman, K.S., Tereshko, L., Marshall, K.B., Weiss, M. J. & Rose, K. (2024) The Perceptions and Experiences of Professionals Collaborating with Behavior Analysts. Journal of Behavioural Education. Available at: https://doi.org/10.1007/s10864-023-09542-4
Chazin, K.T., Ledford, J.R., Wilson-Moses, J.M., Rajaraman, A. & Juarrez, A. P. (2024) Centering Autistic Perspectives: Social Acceptability of Goals, Learning Contexts, and Procedures for Young Autistic Children. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-024-06242-4
Davies, J., Cooper, K., Killick, E., Sam, E., Healy, M., Thompson, G., Mandy, W., Redmayne, B. & Crane, L. (2024). Autistic identity: A systematic review of quantitative research. Autism Research. Available at: https://onlinelibrary.wiley.com/doi/10.1002/aur.3105
Grant, S. L., Hoekstra, R., & Norton, S. (2024). Central Sensitivity Symptoms and Autistic Traits in Autistic and non-Autistic Adults. PsyArXiv Preprints. Advanced online publication available at: https://osf.io/preprints/psyarxiv/bc6ym
Hanley, E., Lehane, E., Martin, A-M. & Dalton, C. (2024) Factors influencing communication partners of persons with severe/profound intellectual disability use of augmentative and alternative communication: an integrative review, Disability and Rehabilitation: Assistive Technology, https://www.tandfonline.com/doi/abs/10.1080/17483107.2024.2313079
Jaswal, V. K., Lampi, A. J., & Stockwell, K. M. (2024). Literacy in nonspeaking autistic people. Autism, 0(0). https://doi.org/10.1177/13623613241230709
Najeeb, P., & Quadt, L. (2024). Autistic well-being: A scoping review of scientific studies from a neurodiversity-affirmative perspective. Neurodiversity, 2. https://doi.org/10.1177/27546330241233088
Quinton, A.M.G., Ali, D., Danese, A., Happe, F. & Rumball, F. (2024). The Assessment and Treatment of Post-traumatic Stress Disorder in Autistic People: A Systematic Review. Review Journal of Autism and Developmental Disorders https://doi.org/10.1007/s40489-024-00430-9
Sturm, A., Huang, S., Bal, V., & Schwartzman, B. (2024). Psychometric exploration of the RAADS-R with autistic adults: Implications for research and clinical practice. Autism, 0(0). Available at: https://doi.org/10.1177/13623613241228329
