Autism Research - What’s New in May 2023?

This research roundup picks out some of the current big debates on autistic lives, and showcases some of the research from teams making an impact on improving the quality of life for autistic individuals.

Content Warning: the last article discussed contains content that some may find upsetting or triggering.

Autistic Adults using Psychiatric Services

Nyrenius and team (2023) look at the very concerning situation around missed diagnosis for autistic adults. This study looked at people who were receiving Psychiatric care. Many of their patients screened positive for being autistic, despite not being diagnosed previously as autistic. Those who were autistic had a higher number of other diagnoses such as anxiety or mood disorders. The team were puzzled that so many of the autistic people had relationships and close friends, as their diagnostic manual informed them that this wasn’t possible. A useful study for ensuring that Psychiatry teams screen for autism. Also useful for observing the dilemmas that outdated and incorrect information about autism in diagnostic manuals can cause for teams.

Stimming and Hobbies for Autistic People

Jasim and team (2023) take a medicalised look at the ways in which autistic people relax and regulate ourselves, preferring to describe these as a “core deficit” that “may interfere with wellbeing and functioning” or which may appear to be “aimless”, and which need “intervention”. The team do not mention the autistic term for this, (“Stimming”) and nor do they mention neurodiversity. The references for alleged ‘interfering’ with daily life are from 2005 and 2012, so very out of date. Clearly if any person, autistic or otherwise, is engaging in something that causes actual harm to themselves or others, that is something that needs care and action.

Unfortunately, however, the team seem unaware of modern research showing the purpose of stimming, focus and routine, or the thousands of accounts from autistic individuals of all kinds who state the benefits of stimming, and the benefits of people who have a deep focus on particular topics. Also of concern, the team suggest stopping ‘restricted and repetitive behaviour’. In their view, ceasing this adaptation may reduce their anxiety. It is far from clear how they have reached this suggestion. This type of normalisation is linked to higher anxiety and to suicidality, and I would recommend the team reading further on this topic.

Further reading:

Kapp, S. K., Steward, R., Crane, L., Elliott, D., Elphick, C., Pellicano, E., & Russell, G. (2019). ‘People should be allowed to do what they like’: Autistic adults’ views and experiences of stimming. Autism: The International Journal of Research & Practice, 23(7), 1782.

Miller, D., Rees, J., & Pearson, A. (2021). “Masking is life”: Experiences of masking in autistic and nonautistic adults. Autism in Adulthood, 3(4), 330-338.

Neurodiversity and School Building Design

Paquet (2023) has written a useful thesis on this subject with a lot of good information about how to design schools that are genuinely inclusive spaces for everyone. I would recommend a read for anyone looking for ideas and inspiration for better and more inclusive design for autistic individuals and for other neurodiversities. Such designs should of course be done with the collaboration, inclusion and expertise of neurodivergent individuals.

Autistic People in Post Secondary Education – barriers to success

Schembri-Mutch and team (2023) explore the personal accounts of autistic people who are attempting to access further education. There is a lot of useful detail on the barriers and difficulties, including interpersonal misunderstandings, baffling instructions, being able to schedule their time in the best way for their needs, and sensory barriers in the environment. Well worth a read for anyone who is encouraging good outcomes and useful careers for autistic individuals.

Autistic women and their experiences soon after giving birth

Donovan and team (2023) asked 24 women to talk about the experiences of giving birth, and the days soon afterwards. Very worthwhile read, detailing the problems of misinformation, miscommunication, sensory difficulties, and lack of trust in staff who has mistreated them during the birthing and postpartum experiences. The women talk of the love they have for their child and their desire to do their best for them despite the obstacles placed in their path by services, incorrect information and some inappropriate advice. Good to see mention of the challenges of breastfeeding when stressed, anxious and in pain. We need to do much to ensure that autistic parents have the best possible experiences before, during and after birth, and appropriate care throughout for them and for their babies.

The Support Goals for Young Autistic Children – Are they Appropriate?

Waddington and team (2023) realised that very little is known about what autistic adults, parents & professionals think about the support goals for young autistic children.

They asked 87 autistic adults, 159 parents of autistic children and 80 clinical professionals what they thought. All tended to agree that the adult changing to better support the child was important. So was reducing harmful behaviours, and improving the child’s quality of life. All generally agreed that play skill training was low priority. The autistic adults were especially concerned about efforts to normalise autistic play and reduce signs of children being autistic. Worth a read, given the huge number of studies which believe that these two latter goals are meaningful and desired.

What are we researching about how autistic children develop and change, and is this what they need?

Gentles and team (2023) have done a major piece of research on this topic. They looked at the main subject areas, and the age groups studied in those areas. It makes it easier to spot gaps in research. Despite nearly 100 years of research, for example, the team note that only two studies have happened on adaptive behaviour for children over age 7. Likewise, there were only two studies of autism symptoms and whether these change over time, for over 12 year olds. This kind of mapping of where research is needed is vital if we are to make any progress. Also vital, as the team note, matching the research with the needs of autistic people and any caregivers. Worth a read.

Content Warning: Euthanasia

Euthanasia, Autistic People and People with Learning Disabilities

In the Netherlands, people can request their own deaths. Tuffrey-Wijne and team (2023) found 39 cases where the reason was being autistic, or having a learning disability. The requests were based on, “…social isolation and loneliness (77%), lack of resilience or coping strategies (56%), lack of flexibility (rigid thinking or difficulty adapting to change) (44%) and oversensitivity to stimuli (26%). In one-third of cases, physicians noted there was “‘no prospect of improvement’ as ASD and intellectual disability are not treatable”

This is a serious concern, in my view. I would recommend a careful reading of the paper, and a deep reflection on what it means to live in any society that offers death as a potential solution to, for example, being lonely. It is equally concerning that the teams guiding such decisions have such a negative and misinformed understanding of the potential for a good life for autistic people and people with learning disabilities.