Autism Research—What’s New in September?
In this month’s research roundup, 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.
Community views of neurodiversity and interventions for autistic people.
Dwyer and team take a look at a controversial topic. It’s a common belief that the Neurodiversity Movement is only supported by a few autistic campaigners who have low support needs. Another common belief is that the Neurodiversity Movement tries to stop people getting support or medical assistance. The research team asked a variety of people for their views, to see if there was any truth to these beliefs.
I’d recommend a read of this, and the figures in the supplement, because it is vital that we understand what is a myth, and what is based on fact.
How many autistic children have ‘severe’ autism? Researchers asked the parents.
Among parents of 1,368 US autistic children, 10% said their child's autism was ‘severe’, rather than ‘mild’ or ‘moderate’, with 45% of the ‘severe’ autistic children also having an intellectual disability, 88% also having a language delay, and 67% having difficulties dressing and bathing. The figure of 10% is very different from the figures given by some professional teams, who regularly claim that ‘severe’ (sometimes renamed as ‘profound’) autism is found in closer to 30% of autistic people (see e.g. research by Hughes et al., 2023, link below). Clearly both figures cannot be right. It all depends how we define ‘severe’ of course. ‘Severe’ and ‘profound’ are usually regarded as very problematic terms by most autistic individuals, who would prefer that we described actual needs.
Hughes’s team decided to count a child as ‘profoundly autistic’ if e.g. they spoke in ‘jargon’ or in repeated phrases, rather than fluent language. That is an unusual approach, in my view; many autistic people communicate with one another in a naturally different way, using that kind of repeated and linked-phrases format. Perhaps the better question would be whether other autistic individuals understood what they were saying?
Recognizing Past and Present Experiences: Toward a Person-Oriented and Trauma-Informed Approach to Autism Research
Very good to see this work, which matches my own thoughts on better and more ethical ways to conduct research with autistic individuals. The common Westernised ‘approaches to research risks causing further trauma to already traumatised individuals.
Adverse and traumatic experiences are common in autism, and they add to autistic persons’ vulnerability in research. Participation in research can lead to further harm and re-traumatization if appropriate care is not taken to mitigate this possibility. Accordingly, this work analyses the potential influences and ethical implications of negative experiences and traumatic histories for the autism research process. It also demonstrates the importance of adding a trauma-informed lens to a Person-Oriented Research Ethics model in research involving autistic individuals.
I am also very much a fan of the work of Dr Helen Kara in this field, for example in her book, “Research ethics in the real world: Euro-Western and Indigenous perspectives” by Policy Press, 2018. Well worth a read. Trust-building and relationship are vital if we are to create real meaning in our research, and enable accurate reflections.
Community Member Views on Autism Intervention: Effects of Closeness to Autistic People with Intellectual Disabilities And Nonspeaking Autistic People
There is a common friction between two major groups: a) Those seeing autism as a faulty brain and wishing to normalise/cure autistic people, and b) those who wish to see better societal supports for autistic people, combined with better access to healthcare for co-occurring medical conditions, for example. The former is often known as the ‘medical model’ of autism, and the latter as the ‘social model’, represented in autistic communities by the Neurodiversity Movement. The ‘medical model’ groups sometimes claim that their side represents autistic people who have higher support needs.
There hasn’t been a lot of research to find out which groups think what, though. The authors ask people, including professionals, parents, and autistic individuals. (There are overlaps between these groups, of course).
Autistic people with Intellectual disabilities and nonspeaking autistic people are seriously underrepresented in intervention research, and some allege that the Neurodiversity Movement is responsible. However, given that autism research funding is generally allocated in alignment with medical model priorities, this blame is likely misplaced.
…the results of this study suggest that the broader autistic and autism communities see Neurodiversity-movement-consistent intervention goals as appropriate for all autistic people, including Nonspeaking autistic people and those with intellectual disabilities. As autism interventions have often pursued unpopular normalization goals, this suggests directions for reform.
Post-diagnostic support for adults diagnosed with autism in adulthood in the UK
Norris and team look at what sorts of support happen after diagnosis, for autistic adults in the UK. This is a summary of their findings, below.
Although some form of post-diagnostic support is available across most areas in the UK, this mostly consists of providing information and 'signposting' the person to other services. These options may not meet the needs of autistic people, who want services such as psychoeducation (therapy whereby an individual receives education about their diagnosis to improve understanding and self-management), and peer support. Findings highlight the need for adequate support to alleviate the post-diagnostic challenges autistic adults face. The study could not evaluate the effectiveness of support options in the UK due to a lack of information about this in published research.
It is concerning that the team couldn’t find enough research on the topic, so far. As I often note, we’ve had 100 years to sort out what autistic people need (taken from the first observations by Sukhareva in the mid 1920s), so it is vital that we now put proper resources into research in this area.
Art therapy: Healing and relationships, not normalisation-enforcement
A common observation in autistic communities is that nearly all joyful hobbies get used as normalisation-interventions, and only funded if they can prove that we behave less autistically after the sessions. This has been true of some Art Therapy also. Gulati and team take the view that art is there as a creative force for good, encouraging genuine friendships and exploration, rather than a way to stop autistic people behaving in naturally autistic ways.
…Art therapy can be optimized to support the developmental needs and enhance the quality of life for children with autism. Using art therapy as an intervention does not imply that children with autism need to conform to neurotypical social norms. It is important to explore the positive impacts of fostering an environment through art where friendships and social interactions can naturally occur
Are autistic people considerate of others? Generally, yes.
The team looked at altruism – being fair to other people, and co-operative, even if it means potentially having less for ourselves. They note that “No significant differences were observed in the proportions of participants with high altruistic co-operation” scores, when comparing autistic and nonautistic people. Plenty more to read, in this, and another good challenge to some of the old myths about autistic people.
The emotional experiences of autistic adults – Occupational Therapy research
Another common myth or misunderstanding about autistic people is the belief that we lack emotion. Good to see this research from the Occupational Therapy sphere explaining that their autistic participants’ descriptions of their emotions included ‘rich, dynamic, and embodied language’. The team also note that autistic expression of emotion is often mismeasured, and misunderstood. Very important for every team and individual who is hoping for good communication between autistic individuals and others.
Is neurodiversity a Global Northern White paradigm?
Nair, Farah and Boveda provide us with an important set of reflections. Whilst the neurodiversity movement has made a lot of progress in challenging the ‘medical model’ of cure and normalisation, is this mostly focused on white, Westernised people at present? Particularly those in the UK and USA? Who have we partnered with across the globe, to reflect on our assumptions and challenge our thinking?
A vital paper, in my view. Do read.
School pupils learning about neurodiversity
Often, neurodivergent children are given the burden of educating everyone around them about autism, whilst also expected to do 100% of the adaptation between neurodivergent & ‘typical’ cultures and communication styles. Very good to see this research into a new initiative to teach the rest of the class about neurodiversity. I shall look forward to follow-up research on the subject.
Do any teams drug autistic young people and adults to stop distress behaviour?
Let us consider a recent example piece of research.
It focuses on giving six young people/adults, age between 12 and 30, a drug, Propranolol, to see if it stops, “…severe and chronic aggression”.
The team did not ask the individuals for consent, nor assent, relying on parents for this. One must ask why a 30 year old needs their parents to consent for them, when there are ample methods to establish assenting behaviours. The team do not appear to have asked why the individuals were showing potential distress behaviour (‘aggression’).
The team used the ABC-Irritability checklist to establish the alleged, “severe” aggression. The checklist has 15 items, and one can score very highly for alleged aggression by, for example:
Saying no to people, loudly and often.
Screaming as an act of self-advocacy, when not listened to.
Having an autistic brain event (meltdown).
Being “irritable” and “whiny”. (Yes, those are the descriptive words).
Being depressed. (No, I’m not joking).
Needing things fast.
Crying over ‘minor’ annoyances and hurts (by the judgement of the team)
Having a changeable mood.
Apparently the autistic individuals did less of these after being given this drug, and that is evidence they are no longer ‘severely aggressive’. Is it?
Propranolol is well documented as causing tiredness/drowsiness as a common side effect. Do drowsy young people lack the energy to show distress behaviour any more?
There is no write-up of ethics, nor mention of Human Rights, in the study. The participants were not asked about quality of life.
The team state,
It should be noted that the 37% reduction in challenging behaviors was somewhat skewed as 1 case in which these behaviors had been present for years showed a dramatic decrease during phase A (on drug).
So, six individuals, and the data is skewed by one rogue result.
I would suggest that this is the research that the autistic communities do not want. Perhaps someone should ask autistic people, and properly involve us in such research?
References
Alcorn, A. M., McGeown, S., Mandy, W., Aitken, D., & Fletcher-Watson, S. (2024). Learning About Neurodiversity at School: A feasibility study of a new classroom programme for mainstream primary schools. Neurodiversity, https://doi.org/10.1177/27546330241272186
Brake, J., Cox, S., & Palmer, P. (2024). Recognizing Past and Present Experiences: Toward a Person-Oriented and Trauma-Informed Approach to Autism Research. Scandinavian Journal of Disability Research, https://doi.org/10.16993/sjdr.1102
Carbone, P. S., Stipelman, C. H., Villalobos, M. E., Ellzey, A., Stuart, A., Stoddard, G. J., Campbell, K. (2024) A Comparison of Parent-Reported Severe Autism With Mild/Moderate Autism Among US Children. Journal of Developmental & Behavioral Pediatrics, https://doi.org/10.1097/DBP.0000000000001306
Dallman, A. (2024). Affective Contact in Autism: A Phenomenological Study of the Emotional Experiences of Autistic Adults. The American Journal of Occupational Therapy, https://www.newswise.com/pdf_docs/172643833263401_AffectiveContactAutism.pdf
Dwyer, P., Gurba, A. N., Kapp, S. K., Kilgallon, E., Hersh, L. H., Chang, D. S., Rivera, S. M., & Gillespie-Lynch, K. (2024). Community views of neurodiversity, models of disability and autism intervention: Mixed methods reveal shared goals and key tensions. Autism, https://doi.org/10.1177/13623613241273029
Gulati, S., Kamila, G., Hameed, B., & Newton, C. R. (2024). Brushing away barriers: The healing touch of art as an intervention in children with autism. Autism, https://doi.org/10.1177/13623613241274845
Hersh, L., Dwyer, P., Kapp, S. K., Shevchuk-Hill, S., Gurba, A. N., Kilgallon, E., Mair, A. P. A., Chang, D. D., Rivera, M. R. & Gillespie-Lynch, K. (2024). Community Member Views on Autism Intervention: Effects of Closeness to Autistic People with Intellectual Disabilities And Nonspeaking Autistic People, Autism in Adulthood. https://doi.org/10.1089/aut.2023.0202
Hughes, M. M., Shaw, K.A., DiRienzo, M., Durkin, M. S., Esler, A., Hall-Lande, J., Wiggins, L., Zahorodny, W., Singer, A. & Maenner, M. J. (2023) The Prevalence and Characteristics of Children With Profound Autism, 15 Sites, United States, 2000-2016. Public Health Reports, https://pubmed.ncbi.nlm.nih.gov/37074176/
Kara, H. (2018) Research ethics in the real world: Euro-Western and Indigenous perspectives, Policy Press
London, E. B., Zimmerman-Bier, B. L., Yoo, J. H. & Gaffney, J. W. (2024) High-Dose Propranolol for Severe and Chronic Aggression in Autism Spectrum Disorder: A Pilot, Double-Blind, Placebo-Controlled, Randomized Crossover Study. Journal of Clinical Psychopharmacology https://doi.org/10.1097/JCP.0000000000001895
Nair, V. K., Farah, W., & Boveda, M. (2024). Is neurodiversity a Global Northern White paradigm?. Autism : the international journal of research and practice,https://doi.org/10.1177/13623613241280835
Norris, J. E., Harvey, R., & Hull, L. (2024). Post-diagnostic support for adults diagnosed with autism in adulthood in the UK: A systematic review with narrative synthesis. Autism : the international journal of research and practice, https://doi.org/10.1177/13623613241273073
Okuzumi, S., Tei, S., Itahashi, T., Aoki, Y. Y., Hashimoto, R. I., Nakamura, M., Takahashi, H., Ohta, H. & Fujino, J. (2024). Roles of empathy in altruistic cooperation in adults with and without autism spectrum disorder. Heliyon, https://www.cell.com/action/showPdf?pii=S2405-8440%2824%2912286-4 .
