“It Defines Who I Am” or “It’s Something I Have”: What Language Do [Autistic] Australian Adults [on the Autism Spectrum] Prefer?

Bury, Simon M.; Jellett, Rachel; Spoor, Jennifer R.; Hedley, Darren

doi:10.1007/s10803-020-04425-3

Cited by 301 publications

(191 citation statements)

References 23 publications

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“…The majority of adults with autism in our sample were female (68%), which is in disproportion with diagnostic rates (31), but common in large online studies (e.g. (32)(33)(34)). The larger part of the participants were residents of Belgium.…”

Section: Demographicsmentioning

confidence: 91%

The Psychological Impact of the COVID-19 Pandemic on Adults With Autism: A Survey Study Across Three Countries

Oomen

Nijhof

Wiersema

2020

Preprint

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BackgroundPrevious studies have reported a negative psychological and mental health impact of the COVID-19 pandemic. This impact is likely to be stronger for people with autism as they are at heightened risk of mental health problems and because the pandemic directly affects social functioning and everyday routines. We therefore examined COVID-19-related changes in mental health, the impact of the pandemic on their social life and routines, satisfaction with pandemic-related information and tips, and participants’ wishes for guidance. MethodsWe used a mixed-method approach, collecting quantitative and qualitative survey data from adults with and without autism across three European countries: Belgium, the Netherlands, and the United Kingdom (N = 1044). ResultsWe found an increase in depression and anxiety symptoms in response to the pandemic for both the non-autism and the autism group, which was greater for adults with autism. Furthermore, adults with autism showed a greater increase in worries about their pets, work, getting medication and food, and their own safety/security. They felt more relieved from social stress, yet experienced the loss of social contact as difficult. Adults with autism also felt more stressed about the loss of routines. Pleasant changes noted by adults with autism were the increase in solidarity and reduced sensory and social overload. Adults with autism frequently reported problems with cancellation of guidance due to the pandemic and expressed their wish for (more) autism-specific information and advice. LimitationsOur sample is likely to reflect some degree of selection bias, and longitudinal studies are needed to determine long-term effects. ConclusionsResults highlight the psychological burden of the pandemic on adults with autism and shed light on how to support them during this COVID-19 pandemic, which is especially important now that the pandemic is likely to have a prolonged course. There is a need for accessible, affordable (continued) support from health services. Guidance may focus on the maintenance of a social network, and adjusting routines to the rapid ongoing changes. Finally, we may learn from the COVID-19-related changes experienced as pleasant by adults with autism to build a more autism-friendly society post-pandemic.

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Section: Demographicsmentioning

confidence: 91%

The Psychological Impact of the COVID-19 Pandemic on Adults With Autism: A Survey Study Across Three Countries

Oomen

Nijhof

Wiersema

2020

Preprint

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“…Thus, ideologies evidenced in everyday and institutional discourse are assumed to both establish and maintain power relationships. 42 Disrupting dominant discourses about autism, primarily controlled by those in positions of power, is therefore necessary to change 99 Areas of interest or areas of expertise, focused, intense, or passionate interests Special needs 98,100,101 Description of specific needs and disabilities Challenging behavior/disruptive behavior/problem behavior 7,37,102,103 Meltdown (when uncontrollable behavior), stimming (when relevant), specific description of the behavior (e.g., selfinjurious or aggressive behavior) Person-first language (to refer to autism) 8,17,65,72,[104][105][106][107] Identity-first language; ''on the autism spectrum'' Medicalized/deficit-based language High/low functioning; high/low severity or support needs 9,17,84,85 Describe specific strengths and needs, and acknowledgment that the level of support needs likely varies across domains (e.g., requires substantial support to participate in unstructured recreation activities, but minimal support to complete academic work) ''At risk'' for ASD 73 Increased likelihood/chance of autism Burden of/suffering from autism 108 Impact, effect Co-morbid 109,110 Co-occurring Autism symptoms 17 Specific autistic characteristics, features, or traits Treatment Support, services, educational strategies (when applicable) Healthy controls/normative sample 111,112 Nonautistic (if determined via screening), neurotypical (if determined via extensive screening ruling out most forms of neurodivergence), comparison group (with description of relevant group characteristics) Psychopathology 98 Neurodevelopmental conditions, neuropsychiatric conditions, developmental disabilities, mental illnesses (or specific mental health condition) Ableist discourses: ways of discussing autism not relegated to the use of particular terms, that reflect and/or contribute to dehumanization, oppression, or mar...…”

Section: The Impact and History Of Language Used To Talk About Autismmentioning

confidence: 99%

“…U.S.-and U.K.-based research has shown that self-identification as autistic and awareness of the neurodiversity movement are associated with stronger preferences for the term ''autistic person'' over ''person with autism.'' 65 Data suggest that ''on the autism spectrum'' may be the least polarizing way to refer to autism, 17,72 but even using this description is a political decision.…”

Section: Current Research On the Language Preferences Of The Autisticmentioning

confidence: 99%

Avoiding Ableist Language: Suggestions for Autism Researchers

Bottema‐Beutel

Kapp²,

Lester

et al. 2021

Autism in Adulthood

723

329

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In this commentary, we describe how language used to communicate about autism within much of autism research can reflect and perpetuate ableist ideologies (i.e., beliefs and practices that discriminate against people with disabilities), whether or not researchers intend to have such effects. Drawing largely from autistic scholarship on this subject, along with research and theory from disability studies and discourse analysis, we define ableism and its realization in linguistic practices, provide a historical overview of ableist language used to describe autism, and review calls from autistic researchers and laypeople to adopt alternative ways of speaking and writing. Finally, we provide several specific avenues to aid autism researchers in reflecting on and adjusting their language choices.

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“…Were thinking about ending your life Not Applicable / No (0); Yes, once / Yes, more than once (1) Were going to attempt to end your life Not Applicable / No (0); Yes, once / Yes, more than once (2) Had attempted to end your life Not Applicable / No (0); Yes, once / Yes, more than once 3Optional follow-up questions (not scored):…”

Section: Have You Ever Told Anyone That Youmentioning

confidence: 99%

“…given that this is the most preferred language of the autistic community. [1][2] We recognise and respect the wide range of terms and different individual preferences for describing autism, and that the language used to describe and talk about autism will continue to evolve over time.…”

Section: Introductionmentioning

confidence: 99%

Development and Validation of the Suicide Behaviours Questionnaire – Autism Spectrum Conditions in Autistic, Possibly Autistic and Non-Autistic Adults.

Cassidy

Bradley

Cogger-Ward

et al. 2020

Preprint

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Background: Autistic people and those with high autistic traits are at high risk of experiencing suicidality. Yet, there are no suicidality assessment tools developed or validated for these groups.Methods: A widely used and validated suicidality assessment tool developed for the general population (SBQ-R), was adapted using feedback from autistic adults. The adapted tool was refined through 9 interviews, and an online survey with 251 autistic adults, to establish clarity and relevance of the items. Subsequently, 308 autistic, 113 possibly autistic, and 268 non-autistic adults completed the adapted tool online, alongside self-report measures of autistic traits (AQ), camouflaging autistic traits (CAT-Q), depression (PHQ-9), anxiety (ASA-A), thwarted belongingness and perceived burdensomeness (INQ-15), lifetime non-suicidal self-injury, and the original version of the suicidality assessment tool (SBQ-R). Analyses explored the appropriateness and measurement properties of the adapted tool between the groups.Results: There was evidence in support of content validity, structural validity, internal consistency, convergent and divergent validity, test retest validity, sensitivity and specificity (for distinguishing those with or without lifetime experience of suicide attempt), and hypothesis testing of the adapted tool (SBQ-ASC) in each group. The structure of the SBQ-ASC was equivalent between autistic and possibly autistic adults, regardless of gender, or use of visual aids to help quantify abstract rating scales.Limitations: The samples involved in the development and validation of the adapted tool were largely female, and largely diagnosed as autistic in adulthood, which is not representative of the wider autistic population. The SBQ-ASC has been developed for use in research and is not recommended to assess risk of future suicide attempts and/or self-harm.Conclusions: The SBQ-ASC is a brief self-report suicidality assessment tool, developed and validated with and for autistic adults, without co-occurring intellectual disability. The SBQ-ASC is appropriate for use in research to identify suicidal thoughts and behaviours in autistic and possibly autistic people, and model associations with risk and protective factors.

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“It Defines Who I Am” or “It’s Something I Have”: What Language Do [Autistic] Australian Adults [on the Autism Spectrum] Prefer?

Cited by 301 publications

References 23 publications

The Psychological Impact of the COVID-19 Pandemic on Adults With Autism: A Survey Study Across Three Countries

The Psychological Impact of the COVID-19 Pandemic on Adults With Autism: A Survey Study Across Three Countries

Avoiding Ableist Language: Suggestions for Autism Researchers

Development and Validation of the Suicide Behaviours Questionnaire – Autism Spectrum Conditions in Autistic, Possibly Autistic and Non-Autistic Adults.

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