Autism Research—What’s New in April 2023?
This research roundup picks out some of the current papers on autistic lives. This particular group has some important focus on autistic adults and their quality of life, and on intersectionality & healthcare outcomes. There is also interesting research news on diagnosis for children.
Improving Autistic Students' Experiences in Higher Education: Developing a Community Framework for Individual Autistic Student and Autistic Community Flourishing
Van Rensburg and Liang raise important points about how autistic students are expected to persuade academic institutions to support them. The result is a confrontational system that exhausts all parties, instead of a collaborative model of flourishing and mutual understanding. Arguably a paper that has usefulness throughout school and employment settings in addition to Higher Education, I would recommend this as a read.
Older Autistic People and Quality of Life: “The Clinical Relevance of Subgroups of Autistic Adults: Stability and Predictive Value”
Radhoe, van Rentergem, Torenvliet, Groenman, van der Putten and Geurts. (2023).
At the time of writing, this was a pre-print made available online before arriving in a Journal. The authors express their dismay that so little research has been done on autistic adults as they age. They note that with so little known about this topic, many older autistic people are sensibly wary of a totally unknown future in which there is little to no planning for their needs, nor understanding of what a good quality of life would look like for them. The team examine factors like anxiety, depression, sleep quality and general quality of life scores over time, to see if they could identify trends and areas where key support may be needed. Input from autistic adults during the process is a good sign of a team thinking about the value of their work for the autistic communities.
Promoting Quality of Life: Suggestions for Mental Health Care Providers Working with Young Autistic Adults.
White, Schall, Santos, Maddox, Hillier, Klinger and Pugliese (2023)
The team here also look at quality of life, but with a focus on younger autistic adults. Various recommendations including teams focusing on strengths, abilities, and potential rather than ‘deficits’. The team reinforce the message around the need to improve quality of life in ways meaningful to autistic people, rather than having life-goals imposed on them in line with the expectations of other people. Empowerment and a proper understanding of intersectionality is needed, along with teams that provide good aid to autistic people and their families when trying to get support.
Health Care Disparities Among Autistic LGBTQ+ People
Wallisch, Boyd, Hall, Kurth, Streed Jr, Mulcahy, McMaughan and Batza (2023)
We know from research & surveys that many autistic people are also part of the wider LGBTQ+ communities. This is a common intersectionality for autistic people, therefore. See for example the survey results at https://autisticnotweird.com/autismsurvey/ where Chris Bonnello analyses results from thousands of responses. More than half of the autistic respondents were part of the wider LGBTQ+ community, and nearly 1 in 5 Transgender.
The results in this new paper suggested that the autistic/LGBTQ+ group reported fewer days when they felt well, had more unmet health care needs, and had more health condition diagnoses. It shows how important an understanding of intersectionality is, for ensuring good health outcomes. Healthcare teams need excellent modern training on autism, sexuality and gender, so that they are confident in providing safe, respectful and caring spaces in which people can feel comfortable disclosing sexuality & gender, and in which they are well informed on what additional healthcare checks may be needed to ensure good outcomes.
Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings
Doherty, McCowan and Shaw (2023)
Dr Mary Doherty & team are proposing a new framework for supporting autistic people in healthcare settings. “SPACE”, detailing Sensory needs, Predictability, Acceptance, Communication and Empathy. Autistic Doctors International team members are putting out high quality thinking that is transforming understand of autistic healthcare needs. Working with wider groups in the UK and internationally, such as AT-Autism, they are supporting a transformed understanding of the need for relationship, trust, empathy and understanding in communicating & collaborating with autistic patients of all ages. Good to see sensory needs and predictability shown clearly as key factors for success. Also contains important information about e.g. how difficult phone use is for many autistic people, yet of course this is expected throughout healthcare provision. I recommend this paper for all autistic people, their families, and everyone involved in seeking or providing healthcare for autistic individuals.
Autistic People are More Altruistic (selfless) : “Using simple economic games to assess social orienting and prosocial behavior in adolescents with autism spectrum disorder”
Hase, Haynes and Hasler (2023)
Hase and team explain that they had an “…unexpected finding of more prosocial behavior in adolescents with autism spectrum disorder than in neurotypical controls”. Whilst all research is a generalisation, this matches other research showing the fairness and honesty of autistic people.
Breast Cancer and Autism
Autistic people need good advice and information on life during and after a cancer diagnosis. Christine Jenkins, researcher, explains her experiences, choices and perspective in this very useful paper.
It may take new diagnostic team members only a few minutes to spot autistic children: “Initial diagnostic impressions of trainees during autism evaluations: High specificity but low sensitivity”
This is a very interesting piece of research by de Marchena and team, who wanted to know if Clinicians training to diagnose autistic children could correctly guess which ones were autistic, in the first few minutes. They could, with some exceptions. The team make recommendations for this being a swift way to get autistic children to good and appropriate support. Worth a read, especially when the current system is struggling to cope.
