Autism Research - What’s New in October 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.

Peer support at school for Neurodivergent pupils

Fotheringham et. al. (2023) explored what good peer support at school would look like, and what benefits it might have. Working with neurodivergent co-designers, several themes emerged, including the importance of the role of the peer support group facilitator, the need for a truly inclusive approach, and addressing the negative perceptions of other people.

Disabled and autistic students and their experiences of intersectional stigma at school

Chatzitheochari and Butler-Rees (2023) asked the opinions of a variety of young people about how they were treated. One of the problems of most research at present is that it attempts to put young people into just one category, e.g. autistic or disabled or Black from a disadvantaged background, etc. The research paper shows how often pupils are in multiple (intersectional) groups, and how much extra impact on their lives this can have. Very important when we consider the needs of the young people we support.

Non-autistic listeners may often mistake autistic voice tone

Informal polls and reports suggest that many autistic people have suffered poor outcomes from non-autistic listeners assuming they are angry when they are not. This study by Gibson et al. (2023) takes a look at a small sample of autistic people, and discusses this topic more widely. Whilst the total number of people in the study is too small for this to count as definitive, so much more research needs to happen around this. Mistakes around whether someone is happy, sad, angry etc. affect nearly all outcomes for people, potentially wrecking relationships, employment prospects and other key elements of life. It is so important that we check for intent, rather than assuming.

Autistic Adults and Independent Living

Ansari, Edwards and Gibbs (2023) team spoke with 11 autistic adults about their quest to live independently, and the obstacles they had to overcome. Important commentary in it about needing autonomy, not isolation.

Barriers to healthcare and a ‘triple empathy problem’ may lead to adverse outcomes for autistic adults

This is a ground breaking study of information from nearly 1250 autistic people. The all-autistic professional research team (Shaw et al. 2023) asked them about healthcare and what the barriers were. Strongly recommended for every practitioner and panel member, with plenty of stark observations about why so many autistic people have poor health outcomes or die so early. For example, staff misunderstanding autistic communication as rudeness, or failing to believe how much pain they are in, because they aren’t ‘performing pain’ correctly. Lots of good recommendations also, including use of the Autistic SPACE framework.

Content warning - detailed discussions of gaslighting (pain), medical neglect, medical child abuse, ableism 

How do autistic children report being in pain?

A very important piece of research, looking at what is known so far about autistic children’s responses to pain. The team (Johnson, van Zijl and Kuyler, 2023) discuss how myths about autism, and misunderstandings about autistic communication of pain, have led to miscalculations of how much pain a child is in. Indeed, in the past, it was sometimes assumed that autistic children didn’t feel pain, and therefore it wasn’t necessary to consider this when encountering ‘behaviour’. Many autistic children experiencing pain are still seen as ‘badly behaved’, and some teams assume that such behaviour is simply a symptom of autism. Other autistic children may suffer pain quietly, or be entirely unaware of their pain levels. Children are too often being left without the medical assistance they need, as a result. Much more needs to be done to ensure that those supporting autistic individuals are able to check for pain, help the autistic individual to explain pain, and enable them to seek good answers.

Autistic People and the Criminal Justice System – What about communication?

Ann’s note: From previous scoping research carried out by me for academic and organisations purposes, it was clear that Autistic people may be involved with the Criminal Justice System (CJS) in a variety of roles. These can include being witnesses to crime, as claimants seeking justice in Small Claims Courts, as victims of crime, or indeed as suspects, for example. At present, few in authority within the CJS consider whether the autistic people have communication needs. Silence may be assumed to be a choice of response rather than an inability to communicate with that person, at that time, in that setting, for example. Autistic voice tone may be misunderstood as oppositional rather than as a feature of autistic voice production for many. Assistive communication may not be understood, offered or enabled. Opportunities to communicate via text or via video evidence may not be offered, and Experts claiming expertise in autism are rarely trained in communication methods.

This particular paper by Larson et al (2023) recommends the use of providers who can assess challenges in language skills, and identify the specific accommodations each autistic individual will need. In my view, this is a vital contribution to this field. So few autistic people receive just and fair experiences within the CJS at present, and skilled communication experts have an important role in ensuring better outcomes for all.

Causes of “challenging behaviour”? What about the poor rapport from some support workers?

This study by Hurman and McGill (2023) looked at three people with a learning disability, two of whom were also autistic. They measured the quality of the relationship that each had with various support workers. The team looked also at past research, for example one that said, “Staff identified as having poor rapport were coached to improve the quality of their relationships with participants. Following this intervention, activities were completed successfully by staff with previously poor rapport, without challenging behaviour occurring”. Very often, all ‘challenging behaviour’ is believed to exist only in the autistic people or people with a learning disability, with all staff regarded as neutral. The idea that distress behaviour may be caused by the ‘challenging behaviour’ of particular staff has rarely been considered. Although this is only a beginning for this research, the findings in it are important and worth exploring by teams whose existing training doesn’t cover this aspect.

Content Warning: medicalisation of autism

Cured? Or forced to hide being autistic?

This recent paper by Harstad et. al (2023) looked at children given an autism diagnosis at a young age (1-3) by a team. They were then given various normalisation-enforcement processes including Applied Behaviour Analysis, and retested using different scales at age 5-7 to see if a different team thought they were autistic. So, it appears the team were not testing like for like. 37% of them now did not match the criteria for autism, they say. From my perspective, there are a number of difficulties with this.

Firstly, we know from other research that pretending not to be autistic (masking/camouflaging) is linked to poor outcomes, including mental health conditions such as Post Traumatic Stress Disorder, suicidality and autistic burnout. A book by Pearson and Rose (2023) is well worth a read, on this subject.

Secondly, some of the testing used to discover if the enforced normalisation has removed autism was, in my view deeply problematic. It apparently included questions about whether the child was now ‘clingy’, laughed too easily, or was sad for no clear reason. These are not autism criteria. Small children are not meant to be independent, nuanced individuals by age 2, nor indeed by age 5. Unfortunately, this type of result appears in media as some proof of success. One has to ask how ‘success’ is being judged.

Content warning: interpersonal violence, abuse, victimisation

Experiences of interpersonal violence for Autistic people

Douglas & Sedgewick (2023) interviewed 24 autistic people about their experiences of surviving abuse and violence from others. The accounts lead to some strong recommendations about recognising the differences in autistic experiences, and in how autistic people describe these. Support services may expect narratives around abuse to be a particular style, and may miss important communication differences from autistic people. Some of the interviewees reported how little sex and relationship advice they’d been given, and how this made it much harder to know what was OK, and what was not. A harrowing read, but so important to realise how many autistic people have had traumatic experiences that need much better support and understanding.