Autism Research - What’s New in July 2023
This research roundup picks out some of the current big debates on autistic lives, and showcases some of the research from teams making an impact on improving the quality of life for autistic individuals.
Content Warning: the last two articles contain content that some may find upsetting or triggering.
‘It seems like a luxury to be able to offer that’: Factors influencing the implementation of annual health checks for autistic people in England
Autistic people are more likely to have mental and physical health problems than non-autistic people, but less likely to be able to access good healthcare. This study asked healthcare professionals and autistic people for their views on the best ways to set up annual health checks. Worth reading for good reflective thinking around this important subject.
Mental health in autistic adults: A rapid review of prevalence of psychiatric disorders and umbrella review of the effectiveness of interventions within a neurodiversity informed perspective
Curnow and team have carried out a useful rapid review of whether mental health interventions work for autistic adults. Twenty studies were examined. They found only four that were high quality, and none of the studies proved that what they were doing was ‘evidence based’. Often, teams did not consider whether the interventions matched autistic needs and were acceptable to autistic people. Lots to consider in this paper, and I’m looking forward to further and deeper reviews on the subject.
Pain assessment in autism: updating the ethical and methodological challenges through a state-of-the-art review
The authors look at the vital subject of how to assess pain levels in autistic individuals. They note that currently many assume incorrectly that autistic people feel little pain, and recommend that a lot more research happens to establish useful ways to assess pain levels. The team are concerned in particular about the plight of autistic children, who may be in considerable discomfort. In my view, this is doubly important, given that distress from pain may be misinterpreted as ‘autistic behaviour’ and assumed to need better behaviour control.
Evaluating the online delivery of an autistic-led programme to support newly diagnosed or identified autistic adults
Crane, Hearst and team have researched an autistic-led programme to support newly diagnosed or identified autistic adults. They make a number of recommendations, such as ensuring support can be available in person, online or in hybrid formats, and the need for really clear advance information & technology support if online options are given. Very good to see this work happening, and well worth reading about.
Book: Autistic Masking, and Research Paper: Dropping the mask: It takes two
Much is now being written about autistic people and having to mask/camouflage being autistic, in order to avoid damaging and stigmatising experiences in society. The new book, “Autistic Masking”, by Amy Pearson & Kieran Rose (Pavilion Publishing, 2023) is well worth acquiring, aimed at people who want a useful read with enough depth to satisfy researchers. Building on the wider work around masking, Cook and team have looked at the views of 133 autistic people, asking them about socialising in ways that felt authentic to them. Lots of good information on successful communication and relationships in this, including the need to for nonautistic people to understanding autistic communication and work with us to create authentic and useful conversations.
Spatial assessment of the attributable burden of disease due to transportation noise in England
Some startling maps in this, showing areas of the country where people are bombarded with high noise levels from traffic and aircraft, for example. Very relevant to autistic individuals and where to live and work, given that so many autistic people struggle with noise levels and may suffer poor sleep & health in consequence. As a background paper, potentially useful.
Ethical challenges in autism genomics: Recommendations for researchers
Plenty of top names in the world of autism and the medical profession in this significant set of recommendations. Often better known by the informal name of ‘genetics’, the subject of genomics and autism is one that may impact every autistic person. With some scientists determined to find a genetic cause for autism so autistic people can be erased from the future, and others seeking ways to alter genetics to allegedly improve our lives, it is so important that we reflect on the ethics of all of this. Most importantly of all, that we do so with autistic people of all kinds.
Exploring Play Interactions of Children With Autism Spectrum Disorders and Their Pets
An increasing number of research papers look at whether pets are a benefit to autistic individuals. Sometimes, however, their methods and questions are based on ideas about autism that have been challenged by more recent research. This particular paper has some useful fact-finding in it. For example, the team state they are the first to record in research that pets can provide comfort to autistic children. Given that autistic individuals have been talking and writing about this for decades, a concern about the state of research in this field, perhaps. But, the research team are still of the view that autistic social skills are inferior to those of nonautistic people, and the job of the animals is to improve our social abilities. With the more recent years of research showing that autistic people socialise differently, rather than in deficient ways, one hopes that research teams examining pet ownership will broaden their understanding in future papers. This work also apparently asks the parents, not the children, for their views, and has a sample size of only two autistic girls, as opposed to eight autistic boys. It will be good to see further research in this field, examining the nuanced and deep connections that can form between autistic people and the animals that share our lives.
Content Warning – suicidality and self harm
The experiences of autistic doctors: a cross-sectional study
Shaw and team set out the findings from this major survey of autistic medical doctors. The results show how much stigma and how many obstacles lie in their path, and how many are forced into hiding in the current systems in order to avoid negativity or impact on career. Many have been sinking into poor mental health as a result. The research team recommend a neurodiversity-affirmative approach to autism, encouraging a more positive self-identity so that people can begin to thrive. They also recommend provision of proper support, and improving team awareness of the often excellent work of autistic medical professionals of all kinds. The work of Autistic Doctors International has provided a lot of peer support and encouragement. In my view, staff should not have to hide being autistic, in order to stay safe at work. Lots of good suggestions in this paper. Looking forward to further research from the group.
Content Warning: sexual assault
Predictors of sexual victimization among autistic and non-autistic college students
Libster and team have attempted to work out whether autistic college students are more likely to be survivors of sexual victimisation, compared to nonautistic students. At odds with some other research, they suggest from their findings that the answer is no. But, I have concerns about the questions they asked. For example, “Since you entered college, have you had any unwanted sexual contact” and another asking similarly about sexual assault. But, the questions did not seemingly extend to how many times this had happened, for example. In the lists of examples to guide the participants, ‘sexual contact’ counted as anything from make a sexual gesture at someone through to ‘brief grabbing’ and blackmail through unwanted filming. The assault examples ranged from an unwanted kiss through to a fairly full range of penetrative assaults, but also included ‘groping’. It was far from clear to me as an autistic person which incidents would go in which category. I sense that the team have not enabled a nuanced and accurate set of responses that would give a much fuller picture of this important topic. The safety of students is vital. I hope that there will be a wider set of research ahead.
