Table 1. Overview of studies included. Author(s), year and Participant Approach and Results Conclusions Strengths Limitations details method Huws, Robert and Nine Qualitative. IPA Superordinate theme: ASC as an Explanation of IPA No explanation “absent Jones. participants. diagnosis, disclosure and presence”. and guidelines used. of theories of Semi-structured having autism. diagnosis or (2008) Three female, individual Possible impact of Participants disclose in wider six male. interviews. Five themes: diagnosis on described in detail - literature. Diagnosis, 1. Disclosure delay. Delay and reader able to situate between diagnosis and disclosure and Age ranged Credibility biography. the sample. No explanation being told. having autism: an from 16-21 assessed: of why 2 2. Providing explanations. interpretative years. Field notes made Biographical Quotes used ground participants were Able to retrospectively phenomenological after each disruption leads to conclusions in the not referred to in understand life events. analysis of the Diagnosis of interview, which questioning of data. the results. 3. Potential effects of perceptions of ASC were used to assumptions and labelling. Both positive and negative. young people with confirmed by develop a reflective behaviours, and Transparency of data Absence of 4. Disruptions and autism. psychologist log at end of each of collection. discussions about opportunities. Disruptions who recruited of two days of biography and reflexivity and of previous life with participants, interviewing. External auditor impact of the access to ASC services. but did not These were referred checked analytical researchers on 5. Acceptance and carry out to during analysis. told about interpretations. the data. avoidance. Initially research. External auditor diagnosis of ASC difficult to accept and then accommodated for Participants made checks. can create a sense Research is relevant some. On-going dislike of gave verbal of uncertainty and and highlights areas diagnosis for others. confirmation loss of sense of for future research. of diagnosis. self.
Table 1. Overview of studies included. Author(s), year and Participant details Approach and method Results Conclusions Strengths Limitations Huws, Robert and Jones. (2008) Diagnosis, disclosure and having autism: an interpretative phenomenological analysis of the perceptions of young people with autism. Nine participants. Three female, six male. Age ranged from 16-21 years. Diagnosis of ASC confirmed by psychologist who recruited participants, but did not carry out research. Participants gave verbal confirmation of diagnosis. Qualitative. IPA Semi-structured individual interviews. Credibility assessed: Field notes made after each interview, which were used to develop a reflective log at end of each of two days of interviewing. These were referred to during analysis. External auditor made checks. Superordinate theme: diagnosis, disclosure and having autism. Five themes: 1. Disclosure delay. Delay between diagnosis and being told. 2. Providing explanations. Able to retrospectively understand life events. 3. Potential effects of labelling. Both positive and negative. 4. Disruptions and opportunities. Disruptions of previous life with access to ASC services. 5. Acceptance and avoidance. Initially difficult to accept and then accommodated for some. On-going dislike of diagnosis for others. ASC as an “absent presence”. Possible impact of diagnosis on and biography. Biographical disruption leads to questioning of assumptions and behaviours, and of biography and told about diagnosis of ASC can create a sense of uncertainty and loss of sense of self. Explanation of IPA and guidelines used. Participants described in detail - reader able to situate the sample. Quotes used ground conclusions in the data. Transparency of data collection. External auditor checked analytical interpretations. Research is relevant and highlights areas for future research. No explanation of theories of diagnosis or disclose in wider literature. No explanation of why 2 participants were not referred to in the results. Absence of discussions about reflexivity and impact of the researchers on the data.
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