Autism Research—What’s New in June
This research roundup 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.
Interactions between autistic people, and quality of life
George Watts and team (2024) take a look at autistic people’s relationships with other autistics. Allegedly we have communication ‘deficits’. Do we? If we do, how do we explain this set of findings?
We wanted to find out what autistic people say about spending time with other autistic people and whether this makes their life better. We found 52 papers which described this and reviewed what they found. We found that many autistic people had positive experiences of spending time with other autistic people and these experiences had positive impact on their lives in a range of different ways.
Black/ African American autistic people and autism interventions/support
Davis and team (2024) take a much needed look at whether some autism interventions are designed with the Black autistic population in mind.
Generally diagnostic interviews, interventions and support are delivered by white teams, using Westernised white language and cultural understandings. As a result, too many Black autistic individuals and their families are missed from diagnosis, or not given an equitable chance of support and useful adaptations.
… few autism interventions are systematically adapted for Black individuals. Autism researchers that have engaged the Black autistic population or their families have been thoughtful in ways of engaging; however, there was no universal framework that drove development or adaptation efforts of these interventions. The development of more culturally responsive autism interventions (i.e. adapted evidence-based interventions) for the Black population offers promise for more equitable autism practices.
Schools, friendships, loneliness
Tsou and team (2024) challenge the idea that autistic children prefer to be alone. Generalising…
…autistic children felt more loneliness when their peers did not like to play with them... Being liked as part of a peer group was key.
In my view, this is why enabling hobby-groups where likeminded autistic children can find each other and feel included in that group can be so powerful.
Moving from Primary to Secondary School – what do neurodivergent students think of this?
Another very good brief research report by Palikara et. al (2024), about neurodivergent students’ views on transitions between schools, and how this relates to mental health and wellbeing.
Currently, most research is grounded in neurodisorder narratives and may not include neurodivergent pupils’ perspective on how to live their best life in school …A collaborative approach to whole-school wellbeing that involves young people, school staff and parents/carers offers opportunities for researchers to deliver knowledge exchange initiatives and support schemes that attune more genuinely to the needs and priorities of students... This holistic approach will provide a more comprehensive understanding of the unique challenges and needs faced by ND children during this critical phase of their education.
The problem with what’s ‘appropriate play’, for diagnostic interviews.
Pritchard-Rowe and team (2024) take a look at diagnostic interviews for adults, which often ask teams to investigate how the person plays with toys, hobby items, etc. The score sheets are normally focused on all the things they allegedly do wrong. The language is one of ‘abnormality’ and ‘severity’. In whose view? The team ask 22 autistic adults for their views, and take a firm stance against the assumption of negativity and the idea that autism is something medical to be fixed:
“In addition to focusing on ‘deficits’…professionals focus on interpreting behaviours derived from non-autistic, rather than autistic views of what autistic behaviours are like. In doing so, such an approach also fails to address the double empathy problem (Damian Milton, 2012) by overlooking possible neurotypical misinterpretations of autistic experiences. This approach reflects the dominance of the medical paradigm that underpins autism diagnostic assessment.”
Sexual minorities identities and quality of life
McQuaid and team (2024) asked 651 autistic adults in the USA about anxiety, depression, stress, quality of life; sexual orientation, sex assigned at birth, and gender identity. They compared sexual minority with heterosexual autistic adults to see if there was a difference in mental health or quality-of-life.
More than 40% reported a sexual minority identity, including asexual, pansexual, bisexual and gay. Sexual minority autistic adults also reported more depression, anxiety, and stress, and worse quality of life. They also reported having less energy and being in more physical pain, and had more concerns about e.g. feeling safe in their homes and neighbourhoods. A powerful piece of work about the impact of multiple areas of marginalisation in life.
Has anyone asked autistic people about our experiences of sexual health advice? They have now.
Sharma and team (2024) ask 25 autistic people and 40 nonautistic people about their experiences of sexual health advice. Some concerning findings within it, especially bearing in mind that we have had 100 years of autism research so far.
Medical providers report barriers that prevent them from discussing sexual health with autistic people. No investigations [until now] have examined the perspectives of autistic adults about their sexual health care experiences.
…the autistic group received less counselling related to sexual health - particularly sexual victimization screening, suggesting that critical information may be missing.
Going to the Dentist: How are dental teams told to support autistic children? What works?
Yin & team (2024) took a look at the behaviour-based research so far on this. They included TEACCH, PECS and ABA. There is no mention of sensory needs within the paper.
“Many studies were of small sample size, lacked a control group, did not account for autism spectrum disorder severity, comorbidities, previous dental experience or other confounders, and had a high risk of bias.”
My note: To no surprise, nothing was proven to work. Arguably this piece of research demonstrates the problem with research that assumes autism is a behavioural deficit where we just need to be taught how to behave ourselves. Much more might be achieved by fully including autistic people in planning visits, including autistic dental team members, and really listening to what works for that person.
The meaning of autistic movements
Good to see this new research on autistic stimming and other ways of moving by Petty and Ellis (2024). After many decades of being told these are pointless and get in the way of useful things, there is an increasing amount of research showing that reality is very different to this assumption.
Movement could be a well-being resource, used to reduce distraction, overwhelm, confusion and distress for autistic people. This should be considered within personal coping strategies and psychological therapies.
We need more affirmation of autistic healthcare professionals
The days of believing autistic people in a clinic are the patients, not the medical professionals, are over, thankfully. A useful paper by Sara Woods (2024), setting out the achievements, barriers and hopes for the future for the 1 in 30 healthcare professionals who is autistic. We still have too many who have to hide. This type of article is key to changing that.
“Many autistic characteristics …set autistic health care professionals apart as especially well-suited for their fields. Increasing the number of autistic health care professionals will benefit their clients, colleagues, and health care fields as a whole. Autistic health care professionals face many challenges, including being misunderstood and discouraged from participating in their fields. Despite the challenges, many health care professionals are thriving. Autistic connections and solidarity are an important part of helping autistic health care professionals overcome obstacles and succeed….Autistic doctors have already demonstrated that they are willing to go against the grain and create change in medicine. They have been particularly successful by advocating in groups against ableism and neuronormative expectations within the medical field. Autistic health care professionals have started organizations centered on autistic experience such as the Autistic Doctors International. They have been successful in mentoring others and writing articles celebrating autistic ways of being, which in itself is revolutionary, given the stigma that has traditionally been associated with autism in medicine”
References
Davis, A. M., Burks-Abbott, G., Merecias, O., & Swenor, B. K. (2024). Autism interventions designed or adapted for the Black/African American population: A systematic review. Autism, 0(0). Available at: https://doi.org/10.1177/13623613241259910
McQuaid, G. A., Gendy, J., Lee, N. R., & Wallace, G. L. (2023). Sexual minority identities in autistic adults: Diversity and associations with mental health symptoms and subjective quality of life. Autism in Adulthood, 5(2), 139-153. https://www.liebertpub.com/doi/10.1089/aut.2021.0088
Palikara, O., Jones, C., Lucas, R., Pavlopoulou, G., Kelly, L., & Sideropoulos, V. (2024) Learning from neurodivergent students about their mental health and wellbeing during transition from primary to secondary school: A scoping review. Preprint accessed from https://osf.io/preprints/psyarxiv/cp6um
Petty, S., & Ellis, A. (2024). The meaning of autistic movements. Autism : the international journal of research and practice, Advance online publication available at: https://doi.org/10.1177/13623613241262151
Pritchard-Rowe, E., de Lemos, C., Howard, K., & Gibson, J. (2024). Autistic adults’ perspectives and experiences of diagnostic assessments that include play across the lifespan. Autism, 0(0). https://doi.org/10.1177/13623613241257601
Pui Ying, L. P., Hoi Wan, F. E., Tung Megan, C. Y., Ming, L. C., McGrath, C. P., & Kar Yung, Y. C. (2024). Psychological behavioral therapies to improve autistic children’s behaviors during dental visits: A systematic review and meta-analysis. Autism, https://journals.sagepub.com/doi/abs/10.1177/13623613241255302
Sharma, A., Pantalone, D. W., Kohn, B., Pereida, E. T., Nadwodny, N., & Faja, S. (2024). Perceptions of Individuals with Autism Spectrum Disorder on How Health Care Providers Address Sexual Health. Journal of developmental and behavioral pediatrics. Advance online publication available at: https://doi.org/10.1097/DBP.0000000000001293
Tsou, Y.-T., Nasri, M., Li, B., Blijd-Hoogewys, E. M. A., Baratchi, M., Koutamanis, A., & Rieffe, C. (2024). Social connectedness and loneliness in school for autistic and allistic children. Autism, 0(0). Available at: https://doi.org/10.1177/13623613241259932
Watts, G., Crompton, C., Grainger, C., Long, J., Botha, M., Somerville, M., & Cage, E. (2024). ‘A certain magic’ – autistic adults’ experiences of interacting with other autistic people and its relation to Quality of Life: A systematic review and thematic meta-synthesis. Autism, 0(0). Available at: https://doi.org/10.1177/13623613241255811
Woods, S. E. O. N. (2024). Why We Need More Autistic Health Care Professionals and How to Support Them. Autism in Adulthood. https://www.liebertpub.com/doi/full/10.1089/aut.2023.0099#utm_source=FastTrack&utm_medium=email&utm_campaign=aut
