Autism Research—What’s New in February 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.
Does anyone get better support if they are called ‘profoundly autistic’?
Waizbard-Bartov and team suggested that there is a usefulness to creating a ‘profound autism’ category for autistic people who, e.g. also have a learning disability, a diagnosis of depression, digestive difficulties, language delays, etc.
This built on the thinking by Lord & team (2022) on this subject.
However, these views have been extensively challenged by teams led by autistic researchers and allies, for example the work of Pukki & team (2022) who represent the Global Autistic Task Force on Autism Research. Their group consists of autistic therapists, clinicians, researchers, parents, individuals with all types of support needs, autistic people of different genders, and autistic representation from the Black and Asian communities, for example.
Pukki & colleagues set out their reasoning for why the term ‘‘profound autism’’ is very problematic.
They note that for decades, autistic people have resisted functioning labels of this kind, due to their ability to mislead.
They also point out that if ‘profound autism’ could mean autism + just about anything else that leads to a need for support, teams would still have no clue what would actually support someone. Surely, they say, it makes more sense to simply describe what a person’s diagnoses are, e.g. also having a learning disability, also having ADHD or a speech delay? Then teams tailor support to those elements for each person, exactly as they should have done from the start. Those championing the ‘profound autism’ term are also often trying to link it to intellectual disability, as if this is part of autism. Whilst there is an overlap, they are separate diagnoses. Pukki and team also invite the research communities to put proper thought into the power imbalances involved, and into the need for a collaborative ethical set of approaches that truly embed and respect autistic voices, experiences and lives.
One senses that this is a debate that has not yet run its course, but it is a vital one for all of us to reflect upon.
Loneliness in Autistic Adults
A very useful thesis by Kana Umagami (2023) as part of their PhD. This is such an important topic to understand, and Kana has done some excellent work in putting together the research background on this, and helping the reader to understand how we can improve lives for people who are too often left isolated in our societies. Amongst their recommendations, the best ways to make autism-friendlier adjustments in social settings, how to create the right resources for mental health professionals on this topic, and creation of good training for teams to gain understanding and acceptance of autistic ways of being, communicating and thriving. Looking forward to seeing more of Kana’s work.
What do people learn about autism from YouTube?
Bakombo and team (2023) took a look at YouTube videos in 2019 and 2022, finding out what some said about autistic people.
They noted that the comments on the videos were mostly negative in 2019, with nearly 60% expressing negative views about autistic people. By 2022, their sample showed even more negative comments, at nearly 77%. Quite a concern.
Whilst good news may not get as many ‘clicks’, it is fair to say that a stream of negativity does not lead to better lives.
Important as a starting point for what’s out there on YouTube, but clearly there is much more to be researched. The public need a balanced view of autistic people, and really good suggestions on what may, or may not be supportive of individuals.
Depression and Autistic Individuals – How exhaustion and lack of social belonging might be causes.
Depression is a very common diagnosis for autistic older adolescents and young adults, and indeed many older and younger individuals. Unfortunately, some teams have believed that autistic people normally appear to be lacking in joy, and prefer to be on their own. It is therefore very important that we have good research looking at the realities of how many autistic people end up depressed, and what might be causing some or all of this.
Richdale and team (2023) looked at whether poor quality of sleep, daytime exhaustion and a lack of sense of belonging to a community can lead to depression. In short, yes. They make some good recommendations as a result, including early intervention to support better sleep, and to enable people to find a real sense of belonging and authentic relationships.
My view is that if we are serious about preventing depression and reducing the number of autistic people considering taking their own lives, we would do well to reflect on this study, and rethink our approaches. In particular, we need to properly consider sensory factors for loss of quality sleep, and limitation of opportunity to spend quality time with people whose company we enjoy.
Enforcing normalisation of autistic people in job interviews, using Applied Behaviour Analysis?
Kahng & team (2023) decided to teach some autistic University undergraduates how to get a job, by appearing not to be autistic during the interview process.
They located seven autistic students willing to take part. They state that “appropriate” interview behaviour included being able to make social conversation and eye contact. The interviewees were also expected not to stim (e.g. repetitive movement that is used by autistic people to regulate our bodies & ensure we can think and plan well). We are informed that only three of the seven completed the research, because e.g. three responded poorly to the individualised training, and there were also ‘complaints’ about the methods used. The team nevertheless believe that this demonstrates something useful in terms of preparation for interviews, although there is no long-term follow-up, no test of harm or adverse effects, and indeed no proper discussion of the ethics of enforcing masking during an interview in order to achieve employment. Given research elsewhere showing the potential harm from enforcing normality (masking) on autistic individuals, e.g. that of Cassidy and team (2020) who discuss the link to suicide, this seems a significant omission.
One might ask what an employer will do once their employee enters the workplace and becomes too exhausted to continue to disguise all of their autistic behaviour in case people treat them poorly.
In separate new research, Finn and team (2023), interviewed ten autistic people about their experiences of job interviews. Many felt forced to mask in job interviews (camouflage their being autistic) in order to get the job. “Those who camouflaged during job interviews reported that it took a lot of effort, which resulted in increased stress, anxiety and exhaustion. The autistic adults we spoke to reported a need for inclusive, understanding and accommodating employers to help them feel more comfortable disclosing their autism diagnosis in the job application process.”
In my view as an experienced employer, exhausted, stressed employees are rarely able to give of their best for an employer for long. Such studies may lead to employers revising their expectations, and making places of employment into neurodiversity-enabled environments where everyone is able to be their authentic selves without misunderstandings from lack of training. Much easier also to drop the idea of interviews for autistic candidates, and use better ways to assess skills relevant to the job specification.
Improving the sensory environments of mental health in-patient facilities for autistic children and young people
The question of how to improve the outcome for autistic individuals in mental health inpatient units remains a vital one to solve. As we know from wider research, too many enter a cycle of meltdown/shutdown, restraint, seclusion, and back into meltdown/shutdown, with no sign of a therapeutic outcome. The sensory environment within the wards is often key, along with changing attitudes and behaviours from the teams supporting the individual. This new paper by Williams, Corbyn & Hart (2022) looks at the background research on autistic sensory needs, and the best ways to improve ward environments so that they are accessible for the autistic patients. With continued concerns about how many autistic people and people with learning disabilities seemingly trapped long-term in such units without any clear sign of improvement in mental wellbeing, this is an important study and one that should be carefully considered.
We continue to support teams to improve sensory environments and to work in an autism informed way. For more information, contact us
A Qualitative Exploration into the Sensory Experiences of Autistic Mothers
This important qualitative study noted that there is no research as yet into the sensory experiences of autistic mothers. Themes include their sensory experiences of pregnancy, birth and motherhood. Clearly we need far more research on this particular topic, given the tens of thousands of autistic parents who are trying to provide the best possible start for their children.
