Autism Research—What’s New in November 2023?
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.
How are autistic parents treated by professionals and services, regarding their child?
Radev, Freeth and Thompson and team (2023) interviewed various autistic parents about their experience of disclosing being autistic, to services that were involved with their child. There are reports of feeling stigmatised and misunderstood, as a result. The team recommend that professionals consider the possibility that parents of autistic children may also be autistic. Co-produced training based on a strengths-based understanding of autism, rather than a deficit-based understanding, is recommended. The provision of support groups for the autistic parents is also recommended. This is essential.
Autism Diagnosis and Self Identity
Prof. Sue Fletcher-Watson (2023) takes a look at the benefits and perils of the autistic diagnostic process, and also reflects on the possible benefits of autistic cultures, self-identity and other factors. Well referenced and worth reading.
An experience sensitive approach to care with and for autistic children and young people in clinical services
McGreevy and team (2023) are involved with national NHS training projects. They discuss how to change the enforced-normalisation approaches in some contexts to ones of collaboration, creating a culture of respect, and one which “…honours the sovereignty of the person, prioritises personalisation of care based on collaborative decision-making, and enables practitioners to support wellbeing from an existential, humanistic view, grounded in acceptance of autistic diversity of being.“
Autistic Strengths, Skills and Interests
Woods and Estes (2023) take a look at how we can better understand autistic strengths, rather than focusing on negative or allegedly negative aspects of autistic ways of being. They include a new measure, the Survey of Autistic Strengths, Skills, and Interests (SASSI) in both adult and child versions, and can be used as part of diagnostic appointments. Usefully, they also note some of the newer research, showing for example that engaging in autistic way of playing at preschool age is linked to improved nonverbal reasoning skills at school-age. Until now, most autism intervention teams have focused on stopping autistic children playing authentically, assuming that this would lead to improved outcomes.
“My heart breaks - solitary confinement in hospital has no therapeutic benefit for people with a learning disability and autistic people”.
Baroness Hollins and team examine the appalling situation of solitary confinement for autistic patients and patients with a learning disability, in mental health settings. Often the cells are referred to as ‘seclusion’, but the report makes clear that the reality is usually enforced isolation and punishment, not therapy and safety. A vital document if we are to move on from the old Asylum ways of treating distressed individuals.
Is ‘mindreading’ ability (making a best guess on the thoughts and beliefs of others) an autistic deficit? More evidence pointing to ‘no, it’s not’.
Sheppard and team (2023) examine whether nonautistic people were good at guessing the thoughts and beliefs of autistic people. They generally were not. Likewise, autistic people weren’t generally good at guessing the thoughts and beliefs of nonautistic people. But, both groups were better with their own peers, e.g. autistic people felt better able to guess when with other autistic people. This is further evidence that we may have been considering autism in the wrong way, and another very worthy paper for reading lists, and one linking to Double Empathy Theory. More research required, but good to see.
Life expectancy of autistic people
O’Nions and team (2023) looked at the possible reduction in life expectancy for people diagnosed as autistic but without an intellectual disability. It appears this is 6.14 years for men and 6.45 years for women. The apparent reduction in life expectancy for people diagnosed with autism and intellectual disability was 7.28 years for men and 14.59 years for women, although the authors note we have found very few autistic adults as yet. Thus, the figures may reflect autistic people who also have other health conditions and happened to also get a pathway to diagnosis as autistic via their medical professionals. More work to be done. But, there’s no doubt that these are concerning statistics. Especially with so many autistic people routinely disbelieved by some healthcare professionals, because of training, communication or measurement errors or omissions.
What about the majority of autistic people, across the globe?
Divan et al. (2023) explored why it is that nearly all autism research happens in wealthy Western countries, when the big majority of autistic people live in low/middle income countries across the globe. What does it mean for most research that claims to ‘know’ about autism, when in fact it is situated only in certain places with particular people? Well worth a read.
Content warning: Neuro-normalisation
Drug Testing to Normalise Socialisation for Autistic Individuals – Is it ethical? Should we be concerned?
Hollander and team (2022) have been testing an experimental drug called Balovaptan on autistic individuals as young as 5 yrs old and for autistic adults. Their article gives a list of the common and rare side effects reported in an autism normalisation trial for this drug, including suicidal ideation, significant digestive difficulties including diarrhoea, and nasal congestion.
In the first paper, Chladek et al (2023) asked only the parents/caregivers if they felt Balovaptan worked in normalising the autistic individual’s social skills. I would think this is problematic; if caregivers have taken the risk of permitting their autistic person to be given experimental drugs, they are arguably far more likely to believe the drug has worked. The team did not ask the autistic individuals what they thought. There is also a claim that all participants gave ‘written, informed consent’, which cannot be true of the younger individuals such as the five year olds.
The second paper (Jacob et al. 2022) notes that Balovaptan did not make any difference to autistic social skill-sets in a large set of individuals. So, it seems that young children may have been given an experimental medication with potentially harmful side effects, for no result, and without their consent.
The third paper by Camarata (2022) acts as a useful background to considering Human Rights and communication rights for autistic people, rather than assuming that medicalised normalisation is an ethical goal. Surveys such as https://autisticnotweird.com/autismsurvey/ point clearly to most autistic people not wishing for a cure for their autistic characteristics.
Is it ethical to give children a drug that may make them unwell, in order to meet a goal apparently set by researchers and carers?
Unethical Enforcement of Normalisation on Autistic People in Research and Treatment?
Continuing the discussion of ethics as per above, Ne’eman and team (2023) consider the matter of enforced normalisation. At present, much of the focus of the autism industries is on getting autistic people to stop behaving as authentic autistic individuals. It would appear that few ethics boards, who are checking the research proposals, are aware of the known harms that can result from this. They note the links to autistic burnout from the intense effort of always having to pretend to be nonautistic. They also list internalised stigma, the potential to teach ineffective or maladaptive skills through misunderstanding of what works for autistic people. The team also list the wide variety of normalisation-demands used in standard outcome measures, looking for a reduction in flapping, rocking, etc. If an underlying aim of modern treatment is to ‘do no harm’, are we fulfilling that brief?
