This was decided on the basis of the time and financial costs of translating articles written in non-English (Arksey & O’Malley, 2005). ![]() Research written in the English language. In line with the age of transition of individuals from children to adult services in some areas, an adult was defined as an individual of 16 years of age and older.Īdults self-identified as autistic with no formal diagnosis of autism and/or adults initially self-identified as autistic and who subsequently had a formal diagnosis of autism. Research that involved adults, where the age of the participants was equal to or more than 16 years. In order to answer the aims of the scoping review, the following inclusion criteria were set: The aim of this iterative process was to synthesize and critically describe the studies that were selected in this scoping review. The authors of this study went through an iterative process to define, discuss, and finalize the search and review strategy of this scoping review. ![]() This scoping review was directed by the research question ‘From the existing literature, what is known about the self-identification of autism in adults with or without a formal diagnosis of autism?’ and was conducted based on guidance by Arksey and O’Malley ( 2005) and Peters et al. In consideration of the reported barriers to an autism diagnostic assessment, this scoping review had two aims: (1) to ascertain 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 process of an adult autism diagnostic assessment. Given the limited research conducted on this topic, a scoping review is appropriate to determine what is known about the factors that seem to be present in adults that self-identify as autistic (Arksey & O’Malley, 2005 Peters et al., 2015). However, little research has been conducted on the self-identification process of autism in adults (Lewis, 2016b), despite the recent inclusion of adults that self-identify as autistic in many research studies (e.g., Cooper et al., 2017). Therefore, in terms of the psychological wellbeing of adults who may be autistic, it is important that the factors underpinning self-identifying as autistic as an adult are understood from a psychosocial perspective. For example, self-identifying as autistic can be a controversial topic in some autism online forums in which some users have been openly sceptical about the validity of it (Sarrett, 2016). Yet, with some alternative sources of support, a supportive online environment is not a guarantee. However, it has been reported that adults who are unable to access formal support (or choose not to) find alternative sources of support, such as autism online forums, in which they tend to share their experiences and concerns after the referral and/or the diagnostic process. ![]() This diagnosis can also assist adults to reframe their new identity in a positive way (Moore, 2016).Īs adults renegotiate their identity, the value of support cannot be underestimated, as the risk of secondary psychological disorders (e.g., anxiety and depression) has been found to increase without appropriate support (Lewis, 2016b). A formal autism diagnosis can help adults to better understand who they are, and/or receive the services and support (e.g., reasonable adjustments at work or in education) they deserve. ![]() It is of concern if self-identifying as autistic is becoming a substitute for a formal diagnosis of autism, especially given the documented merit of a formal autism diagnosis (Brownlow & O’Dell, 2006 Moore, 2016). Consequently, adults’ resort to self-identifying as autistic (Lewis, 2016b). This may be explained by the reported barriers to an autism diagnostic assessment (Lewis, 2016b), for example that General Practitioners (GPs) may fail to recognise the presentation of autism in adults (Crane et al., 2018). Simultaneously, it has been stated that adults are increasingly self-identifying as autistic (Lewis, 2017). In spite of this recognition, many adults report barriers to an autism diagnostic assessment (Jones et al., 2014 Lewis, 2017). It is now recognised that autism may not be diagnosed until adulthood, in some circumstances (Lai & Baron-Cohen, 2015).
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