Utilising Interview Methodology to Inform the Development of New Clinical Assessment Tools for Anxiety in Autistic Individuals Who Speak Few or no Words

Georgina Edwards; Joanne Tarver; Lauren Shelley; Megan Bird; Jessica Hughes; Hayley Crawford; Jane Waite

doi:10.1007/s10803-022-05509-y

Utilising Interview Methodology to Inform the Development of New Clinical Assessment Tools for Anxiety in Autistic Individuals Who Speak Few or no Words

Georgina Edwards^*, Joanne Tarver, Lauren Shelley, Megan Bird, Jessica Hughes, Hayley Crawford, Jane Waite

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

Abstract

Autistic individuals with intellectual disability who speak few or no words are at high risk of anxiety but are underrepresented in research. This study aimed to describe the presentation of anxiety in this population and discuss implications for the development of assessments. Interviews were conducted with 21 parents/carers of autistic individuals and nine clinicians. Data were analysed using content analysis and interpretative phenomenological analysis. Anxiety behaviours described by parents/carers included increased vocalisation, avoidance and behaviours that challenge. Changes to routine were highlighted as triggering anxiety. Clinicians discussed the importance of identifying an individual’s baseline of behaviour, knowing an individual well and ruling out other forms of distress. This study raises considerations for early identification of anxiety and for subsequent support.

Original language	English
Journal	Journal of Autism and Developmental Disorders
Early online date	18 Mar 2022
DOIs	https://doi.org/10.1007/s10803-022-05509-y
Publication status	E-pub ahead of print - 18 Mar 2022

Bibliographical note

© The Author(s), 2022. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit https://creativecommons.org/licenses/by/4.0/

Funding: Georgina Edwards’ contribution to this paper was made possible through funding from the Baily Thomas Charitable Fund (5009-7975). Dr Joanne Tarver’s contribution to this paper was made possible through funding from Autistica (#7251) and the Birmingham Children’s Hospital Charitable Fund (BCHRF512). We are also grateful for Cerebra for providing infrastructure funding, which supports the Network of researchers who contributed to this research.

Keywords

Anxiety
Behaviour
Trigger
Assessment
Qualitative

Access to Document

10.1007/s10803-022-05509-yLicence: CC BY 3.0

Edwards Tarver et al Interview Methodology Autistic Individuals Who Speak Few or No Words
© The Author(s), 2022. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit https://creativecommons.org/licenses/by/4.0/
Final published version, 708 KBLicence: CC BY 3.0

Cite this

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title = "Utilising Interview Methodology to Inform the Development of New Clinical Assessment Tools for Anxiety in Autistic Individuals Who Speak Few or no Words",

abstract = "Autistic individuals with intellectual disability who speak few or no words are at high risk of anxiety but are underrepresented in research. This study aimed to describe the presentation of anxiety in this population and discuss implications for the development of assessments. Interviews were conducted with 21 parents/carers of autistic individuals and nine clinicians. Data were analysed using content analysis and interpretative phenomenological analysis. Anxiety behaviours described by parents/carers included increased vocalisation, avoidance and behaviours that challenge. Changes to routine were highlighted as triggering anxiety. Clinicians discussed the importance of identifying an individual{\textquoteright}s baseline of behaviour, knowing an individual well and ruling out other forms of distress. This study raises considerations for early identification of anxiety and for subsequent support.",

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Utilising Interview Methodology to Inform the Development of New Clinical Assessment Tools for Anxiety in Autistic Individuals Who Speak Few or no Words

Abstract

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Keywords

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