Understanding the self-identification of autism in adults within the UK population: development of a screening questionnaire.

Overton, Gayle Lorraine (2023) Understanding the self-identification of autism in adults within the UK population: development of a screening questionnaire. Doctoral thesis, University of East Anglia.

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Abstract

Despite the recognition that autism may not be diagnosed until adulthood, many adults report difficulties throughout the referral and diagnostic processes of an adult autism assessment. Simultaneously, adults who self-identify as autistic is becoming a growing trend. Yet, little is known about the self-identification process of autism in adults, and minimal practical effort has been made to improve the autism diagnostic pathway for adults. To address these gaps, this thesis began by conducting a scoping review to ascertain (1) what research has been conducted on the self-identification process of autism in adults, who do and do not have a formal diagnosis of autism and (2) to ascertain which aspects of the self-identification process could be used to improve the referral and diagnostic processes of an adult autism assessment. These findings informed the two aims of this thesis: (1) to understand the self-identification process of autism in UK adults, who do and do not have a formal diagnosis of autism; (2) to use this understanding to develop a screening questionnaire to improve the referral and diagnostic processes for this population of adults, who may likely be autistic. Two online focus groups were conducted to understand the self-identification process of autism in UK adults, and to generate items for the screening questionnaire, named the Autistic Identity Questionnaire (AIQ). Through a two-round Delphi method, the AIQ was further developed with experts by experience and healthcare professionals who conduct autism assessments in adults, confirming face and content validity. Initial validation was with 850 adults who identified as autistic, and analyses of validity and reliability were very satisfactory. The AIQ could be a valuable addition within the adult autism diagnostic pathway, and should be trialled in clinical settings to ascertain whether it is a valid and reliable measure for its intended purpose.

Item Type:	Thesis (Doctoral)
Faculty \ School:	Faculty of Social Sciences > School of Psychology
Depositing User:	Kitty Laine
Date Deposited:	12 Nov 2024 14:51
Last Modified:	12 Nov 2024 14:51
URI:	https://ueaeprints.uea.ac.uk/id/eprint/97655
DOI:

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