Opening up autism research: Bringing open research methods to our field

Hobson, Hannah; Poole, Daniel; Pearson, Amy; Fletcher‐Watson, Sue

doi:10.1177/13623613221105385

Cited by 11 publications

(4 citation statements)

References 20 publications

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“…Notwithstanding these limitations, a key strength of the present study was its strong adoption of an open-science approach, including pre-registration of our research questions, sample size, and analysis plans, and the sharing of the dataset and analysis code. As such, it was a major improvement to Oredipe et al (2023) , as well as other studies with autistic adults, towards a stronger, robust evidence base in autism research more generally ( Hobson et al, 2022 ). Furthermore, our data may serve as a substantial resource for future studies on QoL in autism and contribute to prospective meta-analytic work on this topic.…”

Section: Discussionmentioning

confidence: 96%

Re-examining the association between the age of learning one is autistic and adult outcomes

Leung

Shah

Mason

et al. 2023

Autism

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It was recently reported that learning one is autistic earlier in life is associated with greater quality of life and well-being in university students. In a pre-registered extension of this work, we addressed several limitations of this study by (a) recruiting a larger sample of more diverse ages and education levels, (b) distinguishing between learning about and receiving an autism diagnosis, (c) accounting for additional confounding variables, and (d) studying different quality of life dimensions. Autistic adults ( N = 300) reported when they first learned they were autistic, as well as when they actually received an autism diagnosis, and provided detailed socio-demographic information. Participants also completed measures of their autistic traits, as well as well-being and quality of life across multiple domains. In contrast to recent research, we found the age participants first learned they were autistic did not significantly and uniquely predict their quality of life and well-being. Rather, having more autistic traits was the strongest predictor of poorer quality of life and well-being, while other socio-demographic factors were also relevant. We discuss the implications of these findings for understanding and improving outcomes in autistic adults and call for higher quality open science on this important topic. Lay abstract An interesting recent study found that people who learned they were autistic at a younger age felt more positive about their lives (i.e., had better quality of life) than those who learned at an older age. However, this study has some limitations: (a) the study only involved a fairly small group of university students, (b) whether ‘learning one is autistic’ referred to learning about one’s diagnosis or receiving one’s diagnosis was unclear, (c) the influence of other factors on the link between age of learning one is autistic and quality of life was not considered, and (d) the assessment of different areas of quality of life was limited. Addressing these limitations, we re-examined whether the age at which one learns they are autistic relates to quality of life in adulthood. Contrary to the previous study, we found the age at which one learns about their autism does not have a significantly independent impact on their quality of life as an adult. Rather, other factors (e.g., autistic traits, sex, and additional mental health conditions) may have a greater impact. Given our participant sample was larger and more diverse in age and education level compared to previous research, this finding is likely to be more applicable to autistic adults from different backgrounds. Importantly, however, we are not suggesting that individuals should be made aware of their diagnosis later than sooner. Getting a timely diagnosis remains crucial for autistic people and their families to access appropriate support.

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Section: Discussionmentioning

confidence: 96%

Re-examining the association between the age of learning one is autistic and adult outcomes

Leung

Shah

Mason

et al. 2023

Autism

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“…Given the multiple chinks in the DEP theory’s derivation chain—that is, an unclear theoretical concept, poor measures, and unexplored boundary conditions (Figure 1B)—it is currently impossible to make sufficiently strong statistical predictions about the direction or size of any effects. This issue is compounded by a dearth of open science practices in autism and clinical psychological science (Hobson et al, 2022; Tackett et al, 2019), with almost no published DEP studies having preregistered their hypotheses (apart from Crompton, Ropar, et al, 2020). Taken together, predictions made by the DEP theory are ill-defined and therefore challenging to falsify or corroborate, reflecting wider issues in psychological science (see Scheel, 2022).…”

Section: Fuzzy Theoretical Conceptmentioning

confidence: 99%

The double empathy problem: A derivation chain analysis and cautionary note.

Livingston,

Hargitai,

Shah

2024

Psychological Review

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“…These lessons begin with context and acknowledgment of power and as the expert insider, it is important to reiterate that to facilitate change, those who lack power (the autistic) must reposition themselves away from objects of research and become the dialogists for their people. We can say with some certainty that this presents itself as a search for 'epistemic injustice' which is important; as to dispel the myths that exist about autistic people which persist in research of this kind there must be a reckoning; as there are those who believe in the myths of ignorance and there are those who cannot recognize them (Hobson et al, 2022(Hobson et al, , p. 1012. But by virtue of the adoption of closed research methods in eliciting autistic voices, they all are slaves to those myths (Ridout, 2017).…”

Section: Checking Oneself In the Discoursementioning

confidence: 99%

“Te Kore and the Artiste within: De-Tyrannizing Autistic Viewpoints in Life, Self, and Identity through Creative Methodologies”

Whitehead

2023

International Journal of Qualitative Methods

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The voices of the autistic community have been systematically forfeited in research and practice, both as a consequence of the double empathy problem and, as a direct result of albeist methodic approaches to researching and representing autism (Milton, 2012., Goodley, 2016, 2018., Heilker & Yergeau, 2011., Hobson et al, 2022., Ridout, 2017). Methodologically speaking, autism creates challenges for allistic researchers, particularly as there is an associated “exaggerated risk” of researching autistic people and as researchers frequently study and thus experience autism, from etic perspectives (Van De Hoonard, 2016, p. 585). This paper contends that these challenges have resulted in a lack of flexibility in methodologies designed to protect those at risk of harm, creating disproportionate fear and an over-surveillance of autistic research participants, despite their potential. Inertia is a direct consequence of this, which manifests itself twofold. Firstly, as the struggle researchers have in capturing meaningful and authentic autistic representation and secondly, of the methodic implications autistic inertia presents. What is suggested, therefore, is a subversion of homogeneous ways of knowing from the production of quasi-aesthetic representations of autistic voice, favoring those creative methodologies which appreciate that autism is not experienced diachronically. As to capture the realities of contemporary autistic life, dividing practices of ableism must be challenged (Goodley, 2018). Therefore, by centralizing autistic research participants as “insiders” to autistic worlds, researchers will have to lay aside academic habits and rethink, heuristically, how to privilege unobscured autistic voices through transabelism (Garland-Thompson, 2005). For in order to carve out hybrid dilatory spaces from which autistic people can develop their narrative capital, a transableist agenda must be pushed. What will ensue are creative and flexible methodologies that align with social justice beliefs and resist methodic stasis and inertia; as decisions to explore the lifeworlds we experience, as autists, comes with no modus operandi.

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Opening up autism research: Bringing open research methods to our field

Cited by 11 publications

References 20 publications

Re-examining the association between the age of learning one is autistic and adult outcomes

Re-examining the association between the age of learning one is autistic and adult outcomes

The double empathy problem: A derivation chain analysis and cautionary note.

“Te Kore and the Artiste within: De-Tyrannizing Autistic Viewpoints in Life, Self, and Identity through Creative Methodologies”

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