Autism Research—What’s New in December
Ann Memmott 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 adults’ perspectives and experiences of diagnostic assessments that include play across the lifespan
Many autism assessments for adults are loosely adapted from the child versions, including efforts to get autistic people to play with toys. Most autism assessments also focus on a list of negatives about the person, failing to ask about strengths. Is this appropriate? The team ask Autistic adults for their views.
Play is often included in autism diagnostic assessments. These assessments tend to focus on negatives and how people who are not autistic interpret observable behaviours. It is important to take a neurodiversity-affirmative assessment approach. This involves focusing on what autistic people say and looking at strengths and needs. We wanted to find out how autistic adults experience diagnostic assessments that include play. We asked autistic and non-autistic people to help us design our study and interview questions. We then interviewed 22 autistic adults to find out what they think about the use of play in assessments…professionals should adopt a personalised approach to diagnostic assessments that use play catering to each person’s needs. Our findings also suggested that professionals should assess strengths and differences as well as needs.
Pritchard-Rowe, E., de Lemos, C., Howard, K., & Gibson, J. (2025). Autistic adults’ perspectives and experiences of diagnostic assessments that include play across the lifespan. Autism, 29(1), 64-75. https://doi.org/10.1177/13623613241257601
Time to move into more neurodivergent-led, holistic approaches?
Well worth a read. Crane reminds us that for many years, people were often only allowed to receive one diagnosis of neurodivergence, e.g. if they were Autistic and ADHD, they could often only receive a diagnosis of autism. The result has been deeply problematic for many. Things are improving, and more teams realise that the quest for only researching and supporting “pure autism” hasn’t led to many improvements in understanding, nor better results. People do not fit into neat boxes, and an holistic approach is often a better way to explore, & offer, solutions forand with autistic people. Crane also takes a good look at the subject of autistic participation in research, which is moving further away from tokenistic ‘consultation’ and into more proper co-produced research projects. This certainly matches my own observations over the last few years, with more of the well known nonautistic researchers taking steps towards power-sharing and into neurodivergent-led projects. Much more to do, but definitely heading the right way.
Crane L. (2024). Developments and future directions in neurodevelopmental research: A commentary on 'camouflaging in neurodivergent and neurotypical girls at the transition to adolescence and its relationship to mental health: A participatory methods research study'. JCPP advances, 4(4), e12289. https://doi.org/10.1002/jcv2.12289
FND (Functional Neurological Disorder) and autism – what are the links?
How many Autistic people also have Functional Neurological Disorder (FND)? This may be a useful link which explains more about what this is. The diagram below lists some common symptoms (source)
There is potentially a significant overlap between FND and autism, though more research needs to happen. Instead of considering the possible FND symptoms as a choice of autistic ‘behaviour’, it may be worth investigating FND as a possible cause.
Link 1
Gonzalez‐Herrero, B., Happé, F., Nicholson, T. R., Morgante, F., Pagonabarraga, J., Deeley, Q., & Edwards, M. J. (2024). Functional Neurological Disorder and Autism Spectrum Disorder: A Complex and Potentially Significant Relationship. Brain and Behavior, 14(12), e70168. https://onlinelibrary.wiley.com/doi/epdf/10.1002/brb3.70168
Link 2
Vickers, M. L., Menhinnitt, R. S., Choi, Y. K., Malacova, E., Eriksson, L., Churchill, A. W., ... & Pun, P. (2024). Comorbidity rates of autism spectrum disorder and functional neurological disorders: A systematic review, meta-analysis of proportions and qualitative synthesis. Autism, 13623613241272958. https://doi.org/10.1177/13623613241272958
Menopause and Autism
Good to see more work happening on this from Jenkins and team members. A very significant number of autistic people will go through this experience, in life, often unsupported and with all symptoms of menopause usually assumed to be either a symptom of autism, or disbelieved.
We believe that many Autistic people may struggle with menopause. However, we know very little about factors that might make menopause more difficult for Autistic people, and things that might help them through this transition. Our online survey, co-produced with Autistic people, explored whether a lack of awareness about menopause and autism might lead to a more difficult menopause experience. We also aimed to understand what kind of support and information Autistic people need in menopause, and what, if anything, helped Autistic people in menopause cope and even flourish through this life transition….Our findings highlight where there are gaps in knowledge and support for Autistic people during menopause. They highlight that knowledge about menopause, and about one’s autism, are extremely important. They also highlight coping strategies that some Autistic people have found helpful.
Jenkins, C. A., Moseley, R. L., Matthews, R. J., van Rensburg, M. J., Gamble-Turner, J. M., & Brady, M. J. (2024). “Struggling for Years”: An international survey on Autistic experiences of menopause. Neurodiversity, 2. https://doi.org/10.1177/27546330241299366
Does speaking another language make children less Autistic?
A research team considered 21 autistic children who spoke another language to at least a ‘moderate’ degree. One of the children was a girl. Their results appear to show that speaking another language did not affect the social skills ratings of the children, or their ability to guess what nonautistic children and adults were thinking. Undaunted, the team also asked parents to use a test (BRIEF-2, inhibit scale) which normally identifies hyperactivity (ADHD), not autism. They seem to be claiming that speaking another language somehow reduced hyperactivity, therefore making autistic children less autistic? ADHD isn’t autism, so it is not clear how they reach this conclusion. They also appear to rely on parents to comment on their child at a set point in time, rather than using clinicians to measure changes over time, or asking the children about any aspect of this matter.
The paper is being widely reported in the press as a success in providing another ‘intervention’ to normalise autistic behaviour. I have concerns about its findings and conclusions; autistic children are already under immense strain in classrooms. Having extra languages potentially enforced, on the basis of this paper, is not going to improve matters, in my view. Nor is normalisation a general aim of autistic individuals, carrying potential risks around burnout and suicidality (see prior research roundups). Learning a language should be fun, and useful for communication with others speaking that language. Do read the Limitations section carefully, before making any recommendations around the findings.
Romero, C., Goodman, Z. T., Kupis, L., Dirks, B., Parlade, M. V., Beaumont, A. L., ... & Uddin, L. Q. (2024). Multilingualism impacts children's executive function and core autism symptoms. Autism research. https://onlinelibrary.wiley.com/doi/full/10.1002/aur.3260
ABA teams still stopping Autistic children from stimming?
New research from the Applied Behaviour Analysis industry. Autistic children aged as young as five were put into e.g. a very small room with padding on a wall, and made to stop rocking, looking distressed, or moving their fingers, for example. Funded by Autism Speaks.
It remains hard to understand how the ABA industry, and one of its strong supporters, Autism Speaks, have moved on from their past anti-autism approaches. Whilst the industry continues to claim that it is no longer interested in normalising autistic people, this new research seems to be about doing just that. A mystery.
Melanson, I. J., Fahmie, T. A., Ferris, E. L., & Rahaman, J. A. (2024) Validating social reinforcer classes for low‐severity challenging behavior identified by sensitivity tests. Journal of Applied Behavior Analysis. https://onlinelibrary.wiley.com/doi/10.1002/jaba.2925
Autism interventions designed or adapted for the Black/African American population
We need all the research we can get on this subject. Good to see a team focused on better outcomes for Black/African American people.
Black/African American people in the United States who have a diagnosis of autism often experience service-related disparities, including not having the same access to high-quality autism and related care (e.g. behavioral interventions), and are less likely to have sustained treatment engagement across their lifespan. While interventions to support autistic people are typically designed to be universal, there is concern that these interventions not being tailored to the Black/African American population could reduce the overall impact due to a lack of responsiveness to the needs of the Black children or families who receive the intervention…. The majority of the interventions were tailored to Black caregivers of children with autism. …there are still limited interventions adapted to be culturally responsive to Black/African American autistic people.
Davis, A. M., Burks-Abbott, G., Merecias, O., & Swenor, B. K. (2025). Autism interventions designed or adapted for the Black/African American population: A systematic review. Autism, 29(1), 26-40. https://doi.org/10.1177/13623613241259910
Conducting ethical, co-produced research with autistic individuals with an eating disorder: best practice guidelines
More good information about eating disorders, for autistic people. The team explore how to work with autistic people in future, aiming for trusted, ethical co-produced answers.
There is a notable overlap between autism and eating disorders (EDs), and autistic individuals may experience poorer ED treatment outcomes than non-autistic peers. To make meaningful change in this field, it is imperative that we actively engage in co-production of research, however there are currently no guidelines to support co-production with autistic people with eating disorders. This paper reports on best practice guidelines that were co-produced across a series of workshops bringing together autistic people with EDs, researchers, clinicians, third-sector organisations, and parents/carers. The guidelines are intended to be used as a foundation for future co-produced autism and ED research. By creating a trusted, ethical co-production relationship, we hope to generate more clinically meaningful and translatable research.
Nimbley, E. et al., (2024) Eating Disorder and Autism Collaborative Network (EDAC). Conducting ethical, co-produced research with autistic individuals with an eating disorder: best practice guidelines. Eating disorders, 1–11. Advance online publication. https://doi.org/10.1080/10640266.2024.2441540
"I felt belittled and ridiculed for being in pain": An online survey of Autistic people's experience of care for pregnancy loss (perinatal loss) in the United Kingdom
What happens to autistic people who experience pregnancy loss (often called miscarriage or stillbirth)?
Grant and team found that most pregnancy losses appeared to be early in pregnancy. Among 67 participants, over half always sought healthcare for their pregnancy losses, but over a quarter did not access healthcare at all. Of those who received healthcare, over half did not know they were Autistic at the time, and just one person told health professionals that they were Autistic.
Four participants identified instances where staff were supportive or kind, but the majority of experiences were negative, with reported issues focused on communication, the way support was provided, inadequate pain relief and the hospital environment. We generated one overarching theme: "trauma".
We need to do much better than this within healthcare services.
Grant, A., Griffiths, C., Williams, K., & Brown, A. E. (2024). "I felt belittled and ridiculed for being in pain": An online survey of Autistic people's experience of care for pregnancy loss (perinatal loss) in the United Kingdom✰. Midwifery, 141, 104266. Advance online publication. https://doi.org/10.1016/j.midw.2024.104266
A Spectrum of Understanding: A Qualitative Exploration of Autistic Adults' Understandings and Perceptions of Friendship(s)
There has been little research exploring what autistic people value in friendships, and what those friendships are like. Instead, a lot of teams have assumed that autistic friendships should resemble the friendships of nonautistic people. Is this appropriate and true?
Previous research has often documented that friendship is an area of difficulty for autistic people, however this may be caused by a neurotypical understanding of friendship. The current study aimed at adopting a more inclusive account of friendship, involving an autistic participant group representing a range of genders and communication preferences while exploring the following question—What are autistic adults' perceptions of friendships?...The results showed that three main themes emerged under an overarching theme of A Spectrum of Understanding: Identity with Others, Sharing Value, and Shared Presence.
The inclusive approaches used in the current study allowed under-researched autistic groups such as non-speaking autistic people and autistic people who identify as non-binary to participate in meaningful research…Increased understanding of friendships in autistic groups will help to increase awareness of social belonging and support that can protect against poor mental health outcomes.
Gillespie-Smith, K., Mair, A. P. A., Alabtullatif, A., Pain, H., & McConachie, D. (2024). A Spectrum of Understanding: A Qualitative Exploration of Autistic Adults' Understandings and Perceptions of Friendship (s). Autism in Adulthood. https://www.liebertpub.com/doi/10.1089/aut.2023.0051
