Autism Research - What’s New in August 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.

Inner speech and neurodiversity

A very intriguing paper by Alderson-Day and Pearson (2023), who discuss the findings about autistic people and our internal narrative – the process of thinking silently in words. They note that autistic use of inner speech is often different and discuss, for example, the experiences of those of us who think mostly or entirely in pictures rather than words. This is another mythbuster of a paper, noting that, “…the apparent lack of verbal strategy in autistic participants did not make them worse at the task… language in general may occupy a different place within autistic cognition.” Important for teams who assume that lack of speech = poor performance or lack of understanding.

Camouflaging (masking) being autistic – the experiences of autistic children and adolescents

There has been an increasing amount written about the impact of having to disguise being autistic, to avoid poor outcomes in society. This new paper by Howe, Hull, Sedgewick and Hannon (2023) explores the views of autistic children and adolescents, who describe camouflaging as a draining, confusing and stressful experience. The team enable use of photographs as a discussion point. Important for those who teach autistic children to disguise being autistic, thinking this is adding to their quality of life. Is it?

Transitioning to adult life for Black autistic youth

The team ( Roux et al., 2023) make some good recommendations for improving research on this. At present, little is known about the experiences of Black youths as they approach and go through the transition period to adult life. Equally, there is little good information to support that journey at present, with most information assuming that their experiences will be the same as others. Much more needs to be done on this, to ensure excellent outcomes for Black individuals.

Autistic Children in Emergency Departments – Using Sensory Kits

Good to see this paper by Litwin and Sellen (2023), about the use of sensory kits to enable autistic children to cope better in the stressful and overwhelming sensory/social environments of hospital emergency departments. The research team give some alarming history, stating that in one study, it showed that in around a quarter of situations, teams had to use restraints or sedation on autistic children. The ‘behaviour’ is of course because of the level of distress and pain that they were in, and the lack of proper strategies for reducing that distress. There is a very real need for teams to get excellent training on autism, and to equip settings with the right items to enable a better and calming experience for autistic children. Well worth getting a copy of this paper.

Content Warning – ABA accounts

Do we need to ‘fix’ stimming?

This research team (McCormack, Wong and Campbell, 2023) asked some autistic people about their experiences of being forced to disguise repetitive movements, by Applied Behaviour Analysis teams. Content warning for distressing accounts of the impact on the individuals, but well worth a read for the participants explaining why being their authentic selves was so important. Likewise, why a small group of people around them that value them as autistic people is so vital for thriving, rather than having to conform in exhausting and depressing ways to allegedly please others. Whilst there are elements to the paper that are more controversial in their views, this adds usefully to the increasing amount of material challenging the alleged ‘gold standards’ of the ABA industry.

Content Warning – violence and sexual assaults

Violence against autistic people

This paper by Gibbs, Hudson and Pellicano (2023) sets out some very stark findings around the extraordinary levels of violence that autistic people have to survive.

This is a snip from the paper, which also details the experience of other genders.

A quarter of the non-autistic women, for example, had experienced stalking or harassment. This figure rose to 61% for the autistic women. And yet, in so much previous literature, the assumption is that autistic people are the stalkers, basing this on a handful of young men. Teams involved in trauma therapies, Criminal Justice System work or general safety & safeguarding should ensure they read a copy.

Autistic people and financial wellbeing

Good to see this paper by Cai, Hall and Pellicano (2023). With many autistic people being framed as a ‘financial burden’ to society, arguably very unfairly, it is vital to hear the other side of that story. Well worth a read to understand more about the perils of living on low incomes and being unemployed or underemployed in society. Looking forward to more research into this very important subject.

Moving away from negative descriptions of autistic people and into better ways to understand us and enable us to thrive

Mandy (2023) reflects on the life of the first person to be diagnosed as autistic, and how a different and more positive set of thinking about autistic needs & acceptance of autistic people is leading to improved outcomes for so many.

Few Autism Neuroscience Researchers are Autistic

The autism neuroscience industry (Bianco et. al., 2023) has done some research, looking at how many of its researchers are autistic. Not many. Those who are autistic tended to be underpaid and junior, compared to others. This is an important finding, reflecting the degree of power and control that is still held by non-autistic teams over autistic lives.

Content Warning – long term hospital admittance

Autistic people and people with a learning disability who are in mental health hospitals long term

Quinn, Hollins and team (2023) take a look at how we can solve the ongoing disastrous situation in too many mental health hospitals. “Despite numerous UK government policies aimed at reducing the number of autistic people and people with an intellectual disability in mental health hospitals, little progress has been made, with many experiencing lengthy stays that offer little therapeutic benefit. Once admitted, people are at risk of restrictive interventions and significantly delayed discharge, resulting in trauma. This article draws on the cases of four people to illustrate the limitations of current mental health system approaches to the challenges experienced by autistic people and people with an intellectual disability….Distressed behaviour may be a person’s only way to communicate pain or other physical discomfort, or emotional states such as frustration, boredom or fear.”

This is a highly experienced senior team, and a key read for everyone involved in mental health decisions for the groups in question.

Autistic adults discuss the importance of authentic way of playing

With a lot of research focusing on erasing authentic autistic play methods and replacing them with enforced play according to non-autistic standards, this is a useful paper. The team (Pritchard-Rose et. al. 2023) have worked closely with a group of autistic adults to explore what play means to them now or when younger, and what factors lead to useful outcomes for them. They note how important solitary play is for recovering from difficult and stressful situations, and detail how parallel play and playing with similar autistic people are other elements that add to thriving. The paper shows how important it is to ask autistic people, rather than assume that non-autistic people know best.