Autism Research—What’s New in February
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 people decide what’s valid as ways to check for autism
For decades, autism has been assessed using checklists that are arguably very outdated, disrespectful and/or stigmatising. Almost none have been designed with or by autistic people. Hechler & team change this, producing the Comprehensive Autistic Trait Inventory. Well worth a read.
Autistic people know what it means to be autistic…Until now, most autism questionnaires have been made by non-autistic people. In our project, autistic people—including those with and without academic research backgrounds—edited an autism questionnaire called the ‘Comprehensive Autistic Trait Inventory’, or ‘CATI’ for short….In a large online study, we found that the edited measure consistently and accurately measured autistic traits. We also propose basic guidelines for developing measures that better capture autistic people’s experiences by using questions that are respectful and follow language preferences of the community.
Hechler, F.C., Tuomainen, O., Weber, N., Fahr, F., Karlek, B., Maroske. M., Misia, M. & Caruana, N. “What does ‘often’ even mean?” Revising and validating the Comprehensive Autistic Trait Inventory in partnership with autistic people. Molecular Autism 16, 7 (2025). https://doi.org/10.1186/s13229-025-00643-7.
Autistic rapport with groups of autistic and non-autistic people
Another research paper by a top team that overturns what we thought we knew about alleged autistic ‘deficits’ in socialising.
Autistic adults sometimes get along better with other autistic people compared to non-autistic people, but so far this has only been studied in two-person interactions.
This study examined how well autistic and non-autistic people develop rapport in a group setting and whether rapport differs when group members share or do not share a diagnosis….The groups of all-autistic participants expressed that their interactions were more enjoyable and friendly than the mixed groups. Autistic participants reported lower rapport when interacting with non-autistic adults, while non-autistic participants reported similar rapport whether interacting with autistic or non-autistic group members.
Overall, findings are not consistent with a social deficit model of autism, as autistic adults often established rapport with partners in a group setting. Their level of rapport, however, depended strongly on the social context, particularly whether other autistic people were also in the group.
Foster, S. J., Ackerman, R. A., Wilks, C. E., Dodd, M., Calderon, R., Ropar, D., Fletcher-Watson, S., Crompton, C. J., & Sasson, N. J. (2025). Rapport in same and mixed neurotype groups of autistic and non-autistic adults. Autism, 0(0). https://doi.org/10.1177/13623613251320444
Self compassion to overcome stigma
Riebel and team look at the impact of stigmatising attitudes and discrimination, for autistic people. How much do autistic people end up believing the negative things, even when they are untrue? The shame and resulting mental health difficulties are a significant problem. It is so important that we promote language and ways of thinking about autism that are kind, respectful, and also enabling of the right support and healthcare. Self-compassion is a vital part of this. Well worth reading this paper.
Riebel, M., Bureau, R., Rohmer, O., Clément, C., & Weiner, L. (2025). Self-compassion as an antidote to self-stigma and shame in autistic adults. Autism, 0 (0). https://doi.org/10.1177/13623613251316965
Making consent meaningful
This is a topic I follow closely. Far too many settings are using assent/consent methods that fall far below the ideal, or do not ask the individual at all. How do we ensure that assent/consent is accessible and meaningful for autistic people and people with a learning disability? Beck and team explore this.
We offer accessible language, checklists, and consent document examples. We recommend that researchers work with their universities or other research institutions to make changes to university-wide templates and guidance. We highlight the importance of developing strong community partnerships and including community members in attempts to make research more inclusive.
Beck, K. B., MacKenziem, K. T., Kirby, A. V., McDonald, K., Moura, I., Breitenfeldt, K., ... & Working to increase Inclusivity in Research Ethics (WIRE) Consortium. (2025). Guidelines for the Creation of Accessible Consent Materials and Procedures: Lessons from Research with Autistic People and People with Intellectual Disability. Autism in Adulthood. https://www.liebertpub.com/doi/full/10.1089/aut.2024.0263
Intersectional identities – Black autistic children and young people in special education.
Holder gives us the findings from over 40 semi-structured interviews with Black British autistic children/ young people, their families and educators. The interviews look at race, ethnicity and culture and how these influence identity. It also looks at how the children and their families have experienced combined racism and ableism in special schools and other settings; and how special school staff have experienced and witnessed racism in their provisions. So important to consider the findings in this and similar research papers.
Holder, D. M. (2025). “Who am I? More than autism!” Race, Ethnicity, Culture and Autism: An auto/biographical unpacking of intersectional identities among Black British children and young people with autism in English special schools. Doctoral dissertation, Brunel University London. https://bura.brunel.ac.uk/handle/2438/30751
Quality of life for autistic people – who decides?
Existing Quality of Life questionnaires are designed around the answers from nonautistic people. Autistic people may not have the same views on what ‘quality of life’ means for them. LaPoint and team interviewed 25 autistic people about quality of life. They found it to be a very individual set of answers, but with a lot of emphasis on basics like health, food, water, shelter, as well as on enjoyment and on meaningful relationships with other people and animals. The ability to make our own decisions is also important. Lots more to explore in this. The team hope to create an autistic-designed quality of life measure, which will be a huge step forward in designing services that work for autistic people.
LaPoint, S. C., Kiernan, B., Heinly, J., Hector, B. L., Benevides, T. W., & Maddox, B. (2025). Quality of Life Defined by Autistic People: A Thematic Analysis. Autism in Adulthood. https://www.liebertpub.com/doi/10.1089/aut.2024.0180
Central Sensitivity Syndromes and autism are much more closely linked than many realise – a way to improve diagnostic accuracy for both groups?
Grant and team explored the links between autistic traits and CSS symptoms such as Irritable Bowel Syndrome, fibromyalgia, migraine and ME/CFS.
Research has shown that autistic people are more vulnerable to physical ill health than non-autistic people, including chronic health conditions known as “central sensitivity syndromes” (CSSs)…
… Autistic people without a [diagnosed] CSS reported significantly more CSS symptoms, such as fatigue, pain and brain fog, than the comparison group, with many scoring in a range usually seen in diagnosed CSS patients. Non-autistic participants with a CSS had significantly more autistic traits than the comparison group. Autistic people with a diagnosed CSS reported the most sensory sensitivity, with autism only and CSS only groups reporting similar levels of sensory difficulties and all diagnostic groups reporting more sensory sensitivity than the undiagnosed comparison group….. These findings can also inform clinical and diagnostic practice, for example by encouraging clinicians to consider screening autistic people for CSS symptoms and vice versa.
Grant, S., Norton, S., & Hoekstra, R. A. (2025). Central Sensitivity Symptoms and Autistic Traits in Autistic and Non-Autistic Adults. Autism research : official journal of the International Society for Autism Research. Advance online publication. https://doi.org/10.1002/aur.3297
‘Like it’s making my heart run’: a strengths-based understanding of the play of autistic children
O’Keefe’s team challenge the idea that autistic children play in ways that need correction so that they match the play of nonautistic children. For some unfathomable reason, many teams haven’t thought to ask autistic children how they like to play, and how meaningful and joyful it is for them. This team have.
Autistic play is generally described from a deficit perspective where the players themselves have been overlooked. It is important to consult with autistic children themselves about their understanding of play. We asked autistic children about their views on play using many different creative ways that were chosen by the children themselves. We analysed findings using reflexive thematic analysis. Autistic children in this research described play as involving feelings and emotions of pleasure and joy, autonomy and agency, playing by themselves and with others and engagement with materials and activities as meaningful. It is very important that we ask the players themselves what they think about play rather than relying on deficit framed, non-autistic definitions of autistic play. In this article, we will discuss how these findings will help develop future research, theory and practice in respecting children’s right to authentic play experiences.
O’Keeffe, C., & McNally, S. (2025). ‘Like it’s making my heart run’: A strengths-based understanding of the play of autistic children. Autism, 0(0). https://doi.org/10.1177/13623613251315985
Including autistic people in research – what actually works?
This top team take a good look at what’s working, when involving autistic people in research about our lives. Four case studies show the importance of “…building relationships, prioritizing community well-being, and considering diverse identities in neurodevelopmental research.”
They note how few research papers have properly considered and detailed inclusive practices, and call for better reporting and deeper consideration of this. Otherwise, in my view, all we are doing is learning to get research wrong, by watching other teams getting research wrong.
Worth a read for everyone working on inclusive projects for and with autistic people.
Fletcher-Watson, S., Joseph, H., Crane, L., Pavlopoulou, G., Lukito, S., Funnell, E., Alcorn, A.M. & Crompton, C. J. (2024). Applied principles for inclusive practice in neurodevelopmental research: a selection and report of illustrative case studies. Current developmental disorders reports, 12 (1). https://link.springer.com/content/pdf/10.1007/s40474-025-00318-1.pdf
Content Warning : ABA
Use of Applied Behaviour Analysis and antipsychotic medication to ‘improve symptoms’ of autism.
In this new research, a team decide that autistic coping mechanisms such as stimming (‘stereotypy’) , and any other autistic ways of being, are to be stopped. They use a drug, Aripiprazole, combined with Applied Behaviour Analysis (ABA) interventions, on a group of young autistic children.
There is no mention of assent from the young people nor discussion of meaningful consent with caregivers. There is no discussion of the ethics of giving young children a powerful medication originally designed for a very different purpose, and whose side effects include:
”Weight gain, headaches, anxiety, nausea and vomiting, feeling faint, constipation, drowsiness, indigestion, shakiness, dry mouth, spasms, stomach pain, blurred vision, cough, general pain, rash, difficulties breathing through nose, fever, confusion, numbness or weakness, difficulties speaking, mouth or throat sores, thirst, increased urination, loss of appetite, dry skin, seizures, falls, increased urge to self harm, and insomnia, amongst many others.” https://www.rxlist.com/aripiprazole/generic-drug.htm refers.
The paper mentions that a reasonable proportion of parents withdrew consent, and that there was some unspecified non-compliance from the children, though neither situation is detailed.
There is no discussion of quality of life outcomes for the autistic children. The chosen checklist only considers whether the children appear to be ‘normal’ after interventions, in the view of onlookers.
There is no discussion of how autistic people were involved in this study, nor are the views of the young people sought in any other way.
No-one appears to consider any of the potential side effects, or check for long term harms from either the medication or the intense behavioural intervention designed to ‘normalise’ the autistic child’s appearance and mannerisms (Applied Behaviour Analysis). Autistic community concerns about ABA are not mentioned, and the neurodiversity paradigms and other autistic-led theories such as Monotropism and Double Empathy within autism research are not considered.
After all of this, “Table 2 shows that baseline and final total CARS score (Childhood Autism Rating Scale) showed no significant differences…” So, in summary, it did not ‘work’.
I remain deeply concerned about what we do to autistic children, in our quest to make them into someone different, without checking for adverse effects or long term harms, and without asking them for their experiences. There should be far greater ethical scrutiny of such cases in my view.
Solek, P., Gamayani, U., Rusmil, K., Afriandi, I., Prasetya, T., Rizqiamuti, A. F., Nurfitru, E., Burhan, B., Sahril, I. & Gunawan, K. (2024). Autism Spectrum Disorder: a Two-center Evaluation of Pharmacological Intervention and Behavioral Therapies on Core Symptoms. Global Medical & Health Communication (GMHC), 12(3), 249-255. https://ejournal.unisba.ac.id/index.php/gmhc/article/view/14460/pdf
