Autism, Neurodivergence, Support Needs and Inclusion — What’s New in April
In this research roundup, Ann Memmott highlights, amongst others, new studies on Rejection-Sensitivity Dysphoria, masking, ABA and COI, terminology, use of social media, ethnically and racially minoritized Autistic and ADHD adults and retirement.
Rejection-Sensitivity Dysphoria (RSD) and Autistic traits – what do we know, in research?
Although some Autistic people report feeling intensely distressed when encountering rejection or criticism, research has not taken a proper look at this, or the reasons for it.
On social media, many autistic adults use the term Rejection Sensitivity Dysphoria (RSD) to describe how intense and distressing rejection and criticism can feel. However, this term is rarely used in scientific research, which makes it difficult to know what has already been studied. To explore this, we reviewed research on how autistic adults and adults with high levels of autistic traits respond emotionally, physically, or in other body reactions to rejection and criticism. We searched scientific databases and found 12 relevant studies…Altogether, the current preliminary evidence suggests that some autistic adults experience rejection in ways that can feel very intense and distressing. However, studies use different definitions and methods and often reach mixed conclusions. This makes it hard to understand what RSD really means or how best to support autistic adults who experience it.
We hope these findings will encourage researchers to study RSD more directly, define the concept more clearly, and examine how it relates to similar concepts (such as social pain), and examine which personal or situational factors may influence these reactions, and work together with autistic adults to develop ways that help reduce this distress.
van Asselt, A., Reekers, D., & Roke, Y. (2026). Rejection Sensitivity Dysphoria in Autistic Adults: A Scoping Review. Neurodiversity, 4. https://doi.org/10.1177/27546330261441753
Are we measuring Autistic masking the right way, and using the CAT-Q test properly?
Various diagnostic teams are using the ‘Camouflaging Autistic Traits Questionnaire’ (CAT-Q) as part of their explorations with people. It checks whether someone is working intensely hard to disguise being Autistic, in some or all situations (‘camouflaging’ or ‘masking’). Sometimes it is available online as a checklist, e.g. at https://embrace-autism.com/cat-q/ at the time of writing.
Some have queried whether the CAT-Q can be used as part of screening for Autism, or indeed as part of a diagnostic checklist. Occasionally it has been misused as a tool for working out how effective a behaviour-enforcement team’s work is, in allegedly making an Autistic person seem totally non-Autistic. The authors here take another look at the evidence, and make clear that it’s useful for spotting Autistic people’s masking and discussing this with them, and shouldn’t be relied on as a simple ‘standalone’ checklist for screening, diagnosis or interventions. It also has not been tested enough yet in other cultures and countries, so that work still needs to happen.
“In brief, the CAT-Q is not a screening or diagnostic tool, and its total or subscale scores should not be used to determine diagnostic or intervention decisions. Rather, information collected from the CAT-Q may serve as a starting point for a detailed developmental exploration of whether and how a person may have learned to modify autistic behavioral characteristics in social situations over time. Such detailed information, collected through clinical interview, the CAT-Q, and other assessments, may then contribute to a diagnostic formulation.
Hannon, B. R., Hull, L., Lai, M.-C., Magiati, I., & Mandy, W. (2026). The Use and Misuse of the Camouflaging Autistic Traits Questionnaire in Autism Research and Clinical Practice: Issues, Considerations, and Suggestions. Autism in Adulthood. https://doi.org/10.1177/25739581261435868
Childhood ADHD traits, exclusion, and midlife distress
O’Nions and team’s research focuses on the impact of exclusion on people who scored highly on ADHD characteristics, as children, and its impact on their mental health as adults. This might useful for countering some of those in society who say, ‘what’s the point of an ADHD diagnosis?’
People with higher childhood ADHD traits are more likely to experience psychological distress in adulthood, which was partly explained by societal exclusion. Exclusion experienced by people with ADHD may be a determinant of long-term adverse mental health outcomes. Addressing structural and relational barriers across the life course is an important step toward promoting well-being for people with ADHD.
John, A., O’Nions, E., Corrigan, L., Cotton, J., Donnellan, W. J., Nimmons, D., Shelford, H., Eshetu, A., Saunders, R., El Baou, C., Stewart, G. R., Cheung, R. W., Desai, R., McKechnie, D. GJ., Suh, J. W., Mandy, W., Gaysina, D., Pavlopoulou, G., Asherson, P., & Agnew-Blais, J. (2026). Childhood attention deficit hyperactivity disorder traits, societal exclusion and midlife psychological distress. Nature Mental Health. https://doi.org/10.1038/s44220-026-00600-0
How confident are Clinicians at diagnosing non-visible disability, health conditions and Neurodivergence?
Often, not very, it appears. Jerjes and Majeed discuss the situation for healthcare professionals looking to diagnose and support people with any situation where the patient’s characteristics/symptoms are not immediately visible, or easily given a yes/no diagnosis using a simple standardised test. Society, likewise, finds it much easier to plan for visible disabilities rather than invisible ones. The paper gives some practical advice and information and may be very helpful for a range of teams.
Autism, dysautonomia, chronic pain, chronic fatigue, and sensory processing differences are common examples of non-visible disability that can be missed, particularly when symptoms fluctuate or do not map neatly onto a single test result.
The familiar story is the late-presenting young adult who is exhausted and cognitively foggy, told repeatedly that 'tests are normal', and leaves without an explanation, a plan, or a clear reason to return. For many, this is not merely frustrating: it can be invalidating and destabilising, laying the groundwork for distrust, avoidance of care, and, in some cases, experiences that patients describe as medically traumatic. This pattern stems more from system design than individual intent. Needs that are obvious and externally legible (ramps, signage, step-free routes) are more likely to be anticipated and built into services.
Needs that are less visible (quiet space, flexible waiting, paced communication, predictable sequencing, sensory adjustments) are often not considered at all unless a patient discloses them repeatedly and a clinician knows how to translate them into practical adjustments. What is seen is easier to standardise; what is variable is easier to miss. The consequences include delayed recognition, damaged trust, and avoidable use of healthcare through repeated re-attendance and low-value investigation.
Jerjes, W., & Majeed, A. (2026). Non-visible disability in the medical curriculum: what medicine overlooks, patients inherit. Frontiers in Medicine, 13. https://doi.org/10.3389/fmed.2026.1701393
Applied Behaviour Analysis (ABA) researchers are still not declaring possible bias
In 2020, researchers found huge problems with the ABA industry publishing research where teams didn’t declare possible bias (‘conflict of interest’ (‘COI’)). For example, not mentioning that they were paid by the ABA industry, so possibly more likely to make a favourable report about ABA. Had things improved since then?
Well, no.
Vast numbers are still saying there’s no conflict of interest, but there is. Goodness me, this is a big problem, isn’t it. This industry claims to be ‘gold standard’ and ‘evidence-based’, and wins massive contracts because people believe those claims. But, how on earth do we know that their research allegedly offering great evidence of ‘effectiveness’ is as fair and unbiased as possible? We don’t, and can’t.
We wanted to see if researchers tell readers about their COIs, or if they say they do not have COIs when they do. We reviewed autism-related intervention papers published over 1 year in eight ABA journals.
For every paper, we copied the COI statement. Then, we searched online to see if authors were working as or consulting with ABA service providers. We looked at 119 papers with a total of 450 authors. This study is a five-year update of a 2020 study that found widespread but rarely reported financial COIs among ABA researchers. In our updated study, we found that 78% of authors had a COI. Some worked in ABA clinics, some offered paid consulting to other ABA providers, and some did both. Almost all papers (93%) had at least one author with these kinds of connections. But very few (8%) mentioned any COIs, and only 2% of papers stated that the authors worked as ABA providers or consultants.
Most papers said the authors had no conflicts at all, but this was often not true. In fact, 93% of "no COI" statements were false. Although more ABA journals now require disclosure than in the past, many statements are still inaccurate, showing that the problem has not improved. The people in charge of publishing research, and the people who write research papers, need to do much better to let readers know about researchers' COIs.
Bottema-Beutel, K., Hinson-Williams, J., Shen, Y., Guo, R., Brayton, S., Alicea, J., & LaPoint, S. (2026). A 5-Year Update of Conflicts of Interest in Autism Intervention Research in Applied Behavior Analysis Journals. Autism. https://doi.org/10.1177/13623613261433165
Cervical screening and Autistic people
Cancer testing: What do we know about cervical screening ('smear tests') and Autistic people?
Spotting early signs of cancer is so important, and the NHS offers regular screening tests for signs of cervical cancer. Quite a few people don't attend for various reasons, but we haven't studied much on Autistic people. Did they go for the test? What were their experiences?
We asked autistic people in the United Kingdom to complete a questionnaire online to see who has attended their smear test when invited, and looked at different things that might be important in this decision. Pain, sensory issues, and knowledge of cervical cancer did not seem to be important in explaining who did and did not attend a screening appointment. Communication (before, during, and after the screening tests) and previous negative experiences of healthcare (both in general and previous cervical screening tests) were important.
This research further highlights the need for more training for healthcare providers in communication for diverse communities and communication needs. More research is also needed to better understand autistic people’s cervical screening and wider healthcare experiences.
Murdoch, S., Donaghy, B., Grant, A., Sheen, K., & Moore, D. J. (2026). Exploring Autistic People’s Experiences of and Attitudes Towards Cervical Screening: A Mixed-Methods Study. Autism, 0(0). https://journals.sagepub.com/doi/10.1177/13623613261439937
‘It's like calling short people vertically challenged’: Language and terminology preferences among Neurodivergent adults in the United Kingdom
One from our team. We have done a big piece of research on the language preferences of Neurodivergent people and allied groups. This includes Autism, ADHD, Stuttering, Dyscalculia, Dysgraphia, Dyslexia, Dyspraxia, AAC users and non-speaking people, Learning disability, Pathological Demand Avoidance, SPD and Tourette syndrome.
There hasn’t been a lot of research into some of these, so it may be useful for a variety of teams when they think about support, research and diagnostic services. Always ask people for their own preference, of course.
Neurodivergent people (e.g., dyslexic people) do not always agree with the terms commonly used by others (e.g., professionals) to describe their neurodivergence. Our mixed methods study aimed to investigate terminology preferences for different categories of developmental neurodivergence (e.g., autism, dyspraxia) among people from those communities. Participants (n = 902) completed an online survey, ranking the likeability and offensiveness of a range of person-first and identify-first terms for their diagnoses. We invited them to tell us reasons for their preferences via open text response, which we analysed using thematic analysis. Paired samples on identity vs. person first preferences showed identity first language was significantly more likeable, and significantly less offensive for most categories, but not all (stuttering and Tourette syndrome). For the thematic analysis, we developed two key themes, (1) ‘How they talk about us’, which focussed on the inadequacy of existing terminology, and the stigma associated with particular labels, and (2) ‘How we talk about us’, which focussed on viscerality of certain terms, agency to express personal preferences, debates around identity vs. person first terms, and identification with the concept of ‘disability’. Our findings have implications for how neurodivergent people are described, especially by those in professional services.
Pearson, A., Grant, A., Leigh, J., Macdonald, S. J., Williams, K., Williams, G., Spaeth, E., Rose, K., Memmott, A., & Botha, M. (2026). ‘ It’s like calling short people vertically challenged’: Language and terminology preferences among neurodivergent adults in the United Kingdom. Neurodiversity, 4. https://doi.org/10.1177/27546330261428235
Social media use, and (dis)connectedness, in Autism & ADHD
Potter and team take a look at what research says so far about social media (SM) use in Autism & ADHD and its impact on social relationships. Sometimes the main news outlets assume that there is one ‘right answer’ to whether social media use is generally good or bad, and some have called for much stricter controls. The research up to this point hasn’t been entirely helpful, so it’s vital that we read this new paper, in my view, to get a better grip on what we think we know:
The studies reviewed highlighted links between SM use and increased social connectedness for Autistic users, and between SM use and increased social disconnectedness for ADHD users. We also found that there was little consensus on how SM and connectedness/ disconnectedness should be measured, and many of the measures used were not of the highest quality.
…Most of the studies reviewed included data from a single time point only, so that it could not be determined whether SM use impacts connectedness, or experiences of connectedness drive patterns of SM use. There was also a greater focus on potential harms in the ADHD literature, so that it is unclear whether the different findings we found for Autistic and ADHD SM users reflect differences in their actual experiences, or differences in the way that the research is approached.
…From a clinical perspective, we hope that this research will encourage mental health professionals to consider neurodivergent people’s online lives alongside their offline lives, particularly as a potential source of connectedness and/or disconnectedness.
Potter, A. L., O’Leary, A., Incecik, E., Rose, K., Pavlopoulou, G., & Tibber, M. S. (2026). Social Media and Social (Dis)Connectedness in Autism and Attention-Deficit/Hyperactivity Disorder: A Systematic Review. Autism in Adulthood. https://doi.org/10.1177/25739581261435559
“As a Person of Colour, I Was a Misfit Anyway”: Barriers to Autism Identification According to Ethnically and Racially Minoritized Adults
Very good to read this new research from Kostet. It’s so important that diagnosis/self-identity is available to everyone.
“In places such as North America and Europe, people from ethnic and racial minority groups are less likely to be diagnosed with autism…I interviewed 27 adults in Belgium and the Netherlands from various ethnic and racial minority backgrounds, ..many participants said they never considered autism during their youth….Second, participants felt they could not relate to common portrayals of autism, which tend to focus on White middle-class boys and men. This shows how stereotypes still shape how people recognize autism in themselves and others…
1. The findings offer a clearer picture of how cultural factors shape racial and ethnic inequalities in autism diagnosis.
2. The findings challenge narrow, stereotypical views of “culture” in autism research, encouraging more inclusive and fair approaches.
3. The results highlight the need to address biases, both among health care providers and individuals who may misinterpret autistic traits as simply cultural differences.
4. The study encourages autism researchers to incorporate a broad definition of “culture” in autism research to gain a better understanding of the observed disparities.
Kostet, I. (2026). “As a Person of Colour, I Was a Misfit Anyway”: Barriers to Autism Identification According to Ethnically and Racially Minoritized Adults. Autism in Adulthood. https://doi.org/10.1177/25739581261440899
“We’re just not even on the map”: Black women’s experiences of adult ADHD diagnosis and care in the United Kingdom
Gibbs and team take a much needed look at what happens for Black women seeking diagnosis and support for ADHD.
Racism is increasingly recognised as a determinant of poor health, including mental health. Attention-deficit/hyperactivity disorder (ADHD) is a neurodevelopmental condition that has historically been under-diagnosed in women, particularly women from racially minoritised groups, and the experiences of Black women remain underexplored in the literature. This study aimed to explore the lived experiences of Black women in the UK who were formally diagnosed with ADHD in adulthood, with particular attention to their experiences of accessing assessment and support within healthcare systems. Seventeen Black women aged 23 to 54 years participated…
Participants reported stigma, mistrust, and negative or uninformed attitudes towards ADHD. They also encountered misogynoir, stereotyping, and a sense of invisibility as Black women with ADHD. These factors created significant barriers to accessing and navigating healthcare.
…addressing inequalities in ADHD care and treatment will also require more equitable recognition, assessment, and support for ADHD in this group.
Gibbs, A., Isebor, V., Thomas, L., & Morgan, J. (2026). “We’re just not even on the map”: Black women’s experiences of adult ADHD diagnosis and care in the United Kingdom. Advances in Mental Health. https://gala.gre.ac.uk/id/eprint/52857/
Autistic Retirement Planning
We know so little about the huge number of Autistic people approaching retirement age or who are now retired. Very good to see this research from Kowalczyk and team.
Retirement is a major life change, but very little is known about how autistic adults experience this transition. This study explored retirement experiences/expectations of both autistic and non-autistic adults, finding that retirement happened or was expected to happen at similar ages across groups. However, autistic adults were less likely to plan for retirement and often had more difficulties with jobs, money, pensions and their health. Many felt unsure how to prepare for retirement and wanted clearer information. While some had concerns about isolation and changes to routine, others looked forward to more freedom and time for hobbies. The findings highlight the need for better support to help autistic people plan for retirement.
Kowalczyk, Z., Fadzil, A. H. A., Ward, I., Happé, F., & Stewart, G. R. (2026). “A New Pace of Life”: A Mixed-Methods Exploration of Retirement Plans, Preparations and Experiences in Middle-Aged and Older Autistic and Non-Autistic Adults. Autism. https://doi.org/10.1177/13623613261431925
