Autism Research—What’s New in November 2024
In this month’s research roundup, Ann Memmott PgC MA picks out some of the current big debates on Autistic lives, and showcases new and important research from teams and academics working within the field.
Autistic and nonautistic communication: more evidence of difference, not deficit
Yet more evidence of competence in social communication, from autistic people. Based on the evidence, it is becoming increasingly difficult to claim that autism is a social communication disorder.
“In our study, 134 adults were grouped into same-sex pairs: 23 autistic, 23 non-autistic, and 21 mixed-neurotype pairs…[Autistic pairs were] as adept as pairs of nonautistic participants at information exchange in the context of a collaborative task….autistic & nonautistic dyads demonstrated equal efficiency in communicating... & in managing the flow of their interactions"
Geelhand, P., Papastamou, F., Jaspard, S., & Kissine, M. (2024). Autistic adults display different verbal behavior only in mixed-neurotype interactions: Evidence from a referential communication task. Autism : the international journal of research and practice, 13623613241298376. Advance online publication. https://doi.org/10.1177/13623613241298376
Autistic mothers trying to interact with schools for their autistic children
Many autistic children have autistic parents. What are their experiences when trying to advocate for their children in schools?
“Good relationships between families and schools make a difference to children’s learning – and the same goes for autistic children. But parents of autistic children often find it very stressful interacting with teachers and school staff….We spoke to 31 autistic mothers of autistic children about their experiences. They told us that they felt they were constantly fighting with schools to get the support needed for their autistic children and compared it to like being in a ‘war zone’. They …felt that their views and autistic expertise were not taken seriously by teachers and schools. This was damaging to their autistic children’s mental health as well as their own…They spoke about the value of mutual respect and its impact on successful school partnerships. …strong, trusting relationships between school and families are possible – when autistic parents feel safe, and when their knowledge and lived experience are taken seriously by educators.”
Rabba, A. S., Smith, J., Hall, G., Alexander, V., Batty, K., Datta, P., Goodall, E., Heyworth, M., Lamb, S., Lawson, W., Lilley, R., Reid, K., Syeda, N., & Pellicano, E. (2024). ‘I’m sick of being the problem’: Autistic mothers’ experiences of interacting with schools for their autistic children. Autism, 0(0). https://doi.org/10.1177/13623613241297223
Now published: new book on improving mental health therapies for autistic children and young people
The new academic book by Routledge, “Improving Mental Health Therapies for Autistic Children and Young People - Promoting Self-agency, Curiosity and Collaboration”, is written by some of the key researchers and pioneers in this field. It includes my chapter, “Something needs to change”, which discusses how we can encourage better outcomes around mental health and outcomes for children and young people. Other booksellers also offer this volume.
Autistic psychiatrists
Autistic Psychiatrists have taken significant steps to make their presence known, and this new paper looks at some of the barriers they encountered, before realising they too are autistic.
“Recognition of autism followed diagnosis of their children or encounters with autistic patients. Barriers to self-recognition included lack of autism training, the deficit-based diagnostic criteria and stereotypical views of autism. Recognising that they were autistic led to the realisation that many colleagues were also likely to be autistic, particularly in neurodevelopmental psychiatry. All participants reported the ability to quickly recognise autistic patients and to develop a good rapport easily, once they were aware of their own autistic identity. Difficulties recognising patients as autistic occurred before self-recognition when they shared autistic characteristics and experiences. ‘If we don't recognise ourselves as autistic how on earth can we diagnose patients accurately?’”
Doherty, M., Chown, N., Martin, N., & Shaw, S. C. K. (2024). Autistic psychiatrists’ experiences of recognising themselves and others as autistic: a qualitative study. BJPsych Open, 10(6), e183. doi:10.1192/bjo.2024.756
Healthcare and older autistic people
Only around 1 in 10 older autistic people are currently identified by healthcare services. As a result, little is known about our health experiences. This paper asked 19 autistic adults aged 65+.
“We found these main themes: (1) A lifetime of being misunderstood; (2) Autistic people falling between the gaps; (3) Processing autism diagnosis in later life; (4) Concerns about service pressures and scarce resources; (5) Lack of continuity of care, empathy and understanding; (6) Anxiety, alexithymia and sensory overload; and (7) Reduced social support and concerns for the future…. healthcare services should provide more targeted support, make policies and funding consistent, and improve healthcare provision by providing staff training. Importantly, they must also speak with autistic older adults so they can advocate for their current and future care.”
Mansour, H., Gillions, A., Brown, J., Pattenden, A., Hartley, S., Patel, S., James, S., Styles, M., Mandy, W., Stott, J., & O’Nions, E. (2024). ‘It’s designed for someone who is not me’: A reflexive thematic analysis of the unmet healthcare support needs in UK autistic adults aged 65 years and over. Autism, 0(0). https://doi.org/10.1177/13623613241291081 https://journals.sagepub.com/doi/10.1177/13623613241291081
Quality of life measurement, in mental health interventions for autistic adults
Some bracing findings in this new paper, showing how little is known about autistic mental health treatments, and almost nothing known about whether they lead to better quality of life. This may seem surprising, when so many intervention teams claim that their approach definitely improves quality of life. Does it? When recommending a particular mental health treatment, this is an important paper to read and consider.
“…Our review aimed to find out if and how quality of life is being measured when mental health treatments are being tested, and how autistic people and the wider autism community are involved in these studies. We searched four databases and other sources and found over 10,000 records. But just 19 research studies were testing mental health treatments for autistic adults, and only five of those measured quality of life. When they did measure quality of life, it was measured in different ways and there was not much information given on how communities were involved.”
Timmerman, A., Totsika, V., Lye, V., Crane, L., Linden, A., & Pellicano, E. (2024). Quality-of-life measurement in randomised controlled trials of mental health interventions for autistic adults: A systematic review. Autism, 0(0). https://doi.org/10.1177/13623613241287586
Perspective-taking and reasoning, for autistic adults—deficit, difference, or no different to others?
Another myth about autistic people is the belief that we can’t understand that other people have different views to us. This team tested some of this.
“…the autistic and the non-autistic groups did not differ in their nonverbal reasoning abilities, and on our task, we observed that the autistic group committed fewer mistakes than the non-autistic group. Autistic participants were particularly fast and made fewer mistakes on those responses that overlapped with their own view and belief of reality. In conclusion, our findings do not support a simple view of autism in terms of deficits in either social or more general thinking abilities. Instead, autistic adults might favour slightly different ways of thinking about other’s experiences and beliefs that is more firmly linked to their own experience and knowledge.”
Lara Green, R., Joanne Carrington, S., Shaw, D. J., & Kessler, K. (2024). Investigating visual perspective taking and belief reasoning in autistic adults: A pre-registered online study. Autism, 0(0). https://doi.org/10.1177/13623613241290880
Online dating for autistic people
A common way for autistic people to attempt to find a relationship is online dating. But, how successful and safe is this? We don’t know. This team took a look at the research so far, and found that we need a lot more research to happen before we have answers.
“Over the last decade, online dating has become the most popular method for initiating romantic connections, offering a convenient alternative to traditional dating. …online dating platforms provide a controlled environment that can be advantageous for autistic individuals, although they face significant challenges, including difficulties with social norms and safety concerns. However, the studies were largely characterized by small convenience samples, which limits the generalizability of the findings. Research gaps remain, particularly regarding different sexual orientations and gender identities, the self-presentation of autistic females, autistic individuals’ specific aspirations on dating apps, and the role of autism-specific dating platforms.”
Neumann, M., Steiner-Hofbauer, V., & Mittmann, G. (2024). Autism and Online Dating: A Scoping Review. Review Journal of Autism and Developmental Disorders, 1-11. https://link.springer.com/content/pdf/10.1007/s40489-024-00488-5.pdf
Parkinsonism and older autistic people
This research paper shows how important it is to be aware of links to higher levels of conditions such as Parkinson’s, in middle aged and older autistic people. Symptoms can include tremors, increasing stiffness, and slower muscle movement. The paper gives an example research study where 17-33% of autistic people reported having such symptoms in middle and older age. Very little has been known about this, so far, or the impact on autistic lives.
“Evidence is growing for a link between parkinsonism, or the motor symptoms associated with Parkinson's Disease and autism. …the current study [asked] 379 middle and older age autistic adults (40–83 years) …co-occurring parkinsonism was linked with lower subjective quality of life, more memory problems, lower sleep quality, and greater depression symptoms in autistic adults.”
Wallace, G. L., Said, A. J., & McQuaid, G. A. (2024). Elevated parkinsonism symptoms in autism during middle and older adulthood are linked with psychosocial, physical health, and mental health outcomes. Autism research : official journal of the International Society for Autism Research, 10.1002/aur.3274. Advance online publication. https://doi.org/10.1002/aur.3274
https://journals.sagepub.com/doi/10.1177/13623613211020183 links to the data from the research study referred to above.
Do some medications work differently for autistic brains? Apparently so
This new research may have some major implications for medical teams. Whilst there has been a common belief that autism is simply a ‘behaviour’, there are significant brain difference, and these may extend to how autistic brains respond to some medication. The team tested,
“…gamma-amino-butyric-acid (GABA), serotonin (5HT) and mu opioid systems. Every drug challenge altered resting-state network connectivity differentially in the autistic compared to the non-autistic group. However, regardless of the neurotransmitter system probed, drug challenge elicited increases in between-network connectivity in autistic participants but minimal or decreased between-network connectivity in their non-autistic peers.”
In other words, yes, autistic brains seemed to respond very differently to some prescribed medication.
This is, however, not a completed research paper, and still needs to be fully reviewed by academic teams, but it’s one to watch, and one to consider if autistic people are reporting very different effects to those expected, for some medications.
Whelan, T. P., Franca, L. G., Dimitrov, M., Pretzsch, C. M., Velthuis, H., Pereira, A. C., ... & McAlonan, G. M. (2024). Autistic Neural Shiftability: The Distinct Pharmacological Landscape of the Autistic Brain. medRxiv, 2024-11.
https://www.medrxiv.org/content/10.1101/2024.11.08.24316969v1
One size does not fit all: personalising the care and support for neurodivergent people with eating disorders
The team take a look at how we treat eating disorders, for neurodivergent people. They found very little research, and equally little that realised that treatment needs to be personalised and tailored to the range of diagnoses the person has. Listening to people’s lived experience is vital in resolving all of this. Such an important read for so many people and so many teams.
“…research looking at eating disorders in the context of neurodivergence through a transdiagnostic perspective is scarce….. In this view, this paper offers a foundation for future empirical work in this nascent field of inquiry by providing a lived experience-led, transdiagnostic, and intersectional account of eating disorders in the context of neurodivergence.”
Cobbaert, L., Millichamp, A.R., Elwyn, R. et al. Neurodivergence, intersectionality, and eating disorders: a lived experience-led narrative review. J Eat Disord 12, 187 (2024). https://doi.org/10.1186/s40337-024-01126-5
https://link.springer.com/article/10.1186/s40337-024-01126-5
