Autism Research - What’s New in September 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.

Autistic People and Health

A useful and very large study (by Ward et al. 2023) of the health situations for autistic individuals.  This study is part of a series of work, and found higher rates of health conditions of nearly all kinds, in autistic people.  They also found strong evidence that Ehler-Danlos Syndrome (EDS, part of the wider hypermobility group of conditions) is more likely to happen in autistic females. 

My note:  This particular condition can cause serious degrees of fatigue, difficulties moving well, joint pain etc. and is rarely checked for at present.  Arguably teams would be wise to consider this as a possibility for any autistic woman in their care, and ask for assessments to be done.

Certainly this study by a top team shows how important it is to assume that ‘behaviour’ may be related to undiagnosed pain or health conditions, and ensure that all autistic people are receiving regular checks that enable them to give a good account of any discomfort or difficulties, health wise.

Accessing Support for Autistic People with a Learning Disability

In this study by Hughes et al. (2023) caregivers were asked about their experiences of trying to get support for autistic people who also have a learning disability.  Caregivers reported that services failed to deliver the support that they expected, which meant they often needed to fight for basic services. What would help? The caregivers suggest that it needs better partnership working between services and families, access to peer support, and families being offered interventions that are more tailored for them, rather than ‘one size fits all’. The contributions of those with lived experience are vital if progress is going to be made.

Autistic Burnout

Arnold and team (2023) have asked over 140 autistic people about their experiences of autistic burnout. Whilst very common in autistic lives, this has barely featured beforehand in research and literature, largely due to misunderstandings about alleged autistic ‘behaviour’. The autistic people explained that they may have both short and long episodes of burnout, leading to exhaustion. When it happens, it’s much harder to socialise or to cope with physical environments that are a sensory nightmare.

Unfortunately, due to the misunderstandings about autistic burnout, many had been misdiagnosed with depression, anxiety, borderline personality disorder, bipolar disorder, or other conditions. Teams need to become skilled in understanding this all-too-common part of autistic life, and doing excellent research into what really helps people to avoid burnout, and to recover well from it.

Autistic LGBTQIA+ Inclusion in the LGBTQIA+ Communities

In this study by McAuliffe, Walsh and Cage (2023) interviewees mentioned many barriers when trying to access the LGBTQIA+ communities. Community spaces tend to be overwhelming in social and sensory ways. It was common to find that nonautistic LGBTQIA+ individuals did not really understand autism, and tended to act as ‘gatekeepers’, not keen to include autistic LGBTQIA+ people. Despite these barriers, interviewees still wanted to be included in wider LGBTQIA+ communities. They suggested solutions including more flexible online spaces, more role models from the autistic LGBTQIA+ groups, and fighting for wider change in society. This article is very useful for those exploring intersectionality and autistic people, and given the huge number of autistic people who are also LGBTQIA+, a vital subject to keep exploring in collaborative ways.

Autistic People Encouraging Better Research

Tan (2023) takes a look at how autism research is changing, thanks to the input and determination of the autistic communities. There has been some alarm that autistic people have demanded a change in how autism is described, and which aims are researched. Tan argues that the change is very much for the better, serving the needs of the autistic communities rather than the existing narratives of deficit, disorder, obsession and the quests for enforced cures & normalisation-approaches. The alarm of some researchers is curious, given that science is meant to evolve in response to new information and to constantly question its understanding of situations. In my view, the scrutiny of autistic people and our allies has led to significant improvements in more of the research papers, and growing readership of pioneering journals such as Autism in Adulthood. There is much more to be done, but good autism research should always be centred on improvements in our lives, not on the careers of a few particularly powerfully-placed researchers.

Writing Stories: Challenging the idea that autistic people lack imagination

This is another useful paper (by Shevchuk et al., 2023)that asked autistic and nonautistic students to do some writing, and then looked at what they produced. There was plenty of evidence of autistic people writing useful fiction stories, and having a generally better grasp of grammar than the nonautistic students. The authors recommend encouraging more autistic people to take up writing/typing of stories, given the strengths shown. Good to see this type of research, which challenges the idea that autistic people lack an imagination and are only interested in facts.

When Behaviourists Decide that Child Play is Wrong

This Applied Behaviour Analysis (ABA) team (Mattson et al., 2022) decide that autistic children are playing incorrectly if they play alone, and must be taught to play with others. In addition, they decide that the children must only say certain things, in certain ways, when playing.

We get a sense of how things went from the write-up. We are told that they attempted to get five children to take part. Two were then excluded, including one who said no to them and made it clear from extreme distress behaviour that he wasn’t going to take part in their tests and did not appreciate enforced physical contact with the team. This left three children, aged 3 or 4 years old. The children were, for example, told that they absolutely must start with the phrases 'look at the...' 'I found the…’ or ‘I’m playing with the…’ when playing with items, or they were not playing correctly. The study had no description of ethical thinking, and no description of how it tested for adverse effects or harms from the study either at the time or during follow-up. It did not appear that the children actively assented to the study. It also appears that the team failed to consider whether this form of play was meaningful and appropriate for autistic children. I must admit to being concerned about enforcing very rigid play and spoken-word patterns on autistic children, and framing authentic autistic ways of playing as deficient.

Autism, Neurodiversity and Ethics – Parents exploring early diagnosis and supports

The research team (Vanaken et al, 2023) asked parents what they thought about the recent changes in thinking about autism. If their child may be autistic, how would an early diagnosis or identification help or hinder them? Good to see this paper exploring some of the ethical thinking that needs to happen, especially with so many teams still urging parents to ‘treat’ their child to allegedly stop them being autistic – and given the emerging research into the harms of many of these approaches. Well worth reading, not least for wisdom such as this: “In a recent editorial… Brown et al. launched a call to support a neurodiversity approach from the early start of clinical autism trajectories: “It is critical that diagnosticians, who are often one of the first to frame autism for families, consider moving away from the medical model’s deficit-based story to a more balanced, neurodiversity-framed view of autism”.

Autistic People and Autonomy

The team (Thompson-Hodgetts et al. 2023) asked a number of autistic individuals about how much choice and control meant to them, in their lives. The participants discussed the problems of ableist expectations and discrimination. Some also explored the difficulties of executive processing differences that interfered with choice and decision-making. There was a strong desire to see better support around autonomy (rather than ‘independence’), and creating safe spaces in which people can be their authentic selves rather than having to ‘mask’. Everyone invested in improving quality of life for autistic people would be wise to read the discussions in this.