Diagnosis, disclosure, and having autism: An interpretative phenomenological analysis of the perceptions of young people with autism
Background Although there is extensive research examining parental experiences of assessment and diagnosis of autism, there is a paucity of research from the perspective of individuals with autism. Method Semi-structured interviews were conducted with nine young people with high functioning autism...
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| Veröffentlicht in: | Journal of intellectual & developmental disability 2008-06, Vol.33 (2), p.99-107 |
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| creator | Huws, Jaci C. Jones, Robert S. P. |
| description | Background Although there is extensive research examining parental experiences of assessment and diagnosis of autism, there is a paucity of research from the perspective of individuals with autism.
Method Semi-structured interviews were conducted with nine young people with high functioning autism who were capable of providing a verbal account of their perceptions of autism and diagnosis experiences. Data were analysed using interpretative phenomenological analysis.
Results Diagnosis, and the disclosure of the diagnosis of autism, were embedded in respondents' perceptions of "having" autism. This superordinate theme included five themes: (i) disclosure delay, (ii) providing explanations, (iii) potential effects of labelling, (iv) disruptions and opportunities, and (v) acceptance and avoidance.
Conclusion In relation to the existing literature, it is suggested that the effects of diagnosis, or disclosure of diagnosis, from the perspective of the person with autism be given greater consideration. |
| doi_str_mv | 10.1080/13668250802010394 |
| format | Article |
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Method Semi-structured interviews were conducted with nine young people with high functioning autism who were capable of providing a verbal account of their perceptions of autism and diagnosis experiences. Data were analysed using interpretative phenomenological analysis.
Results Diagnosis, and the disclosure of the diagnosis of autism, were embedded in respondents' perceptions of "having" autism. This superordinate theme included five themes: (i) disclosure delay, (ii) providing explanations, (iii) potential effects of labelling, (iv) disruptions and opportunities, and (v) acceptance and avoidance.
Conclusion In relation to the existing literature, it is suggested that the effects of diagnosis, or disclosure of diagnosis, from the perspective of the person with autism be given greater consideration.</description><identifier>ISSN: 1366-8250</identifier><identifier>EISSN: 1469-9532</identifier><identifier>DOI: 10.1080/13668250802010394</identifier><identifier>PMID: 18569397</identifier><identifier>CODEN: JIDDFG</identifier><language>eng</language><publisher>England: Informa UK Ltd</publisher><subject>Adaptation, Psychological ; Adolescent ; Adult ; Attitudes ; Attitudes toward Disabilities ; Autism ; Autism spectrum disorders ; Autistic Disorder - diagnosis ; Autistic Disorder - psychology ; Clinical Diagnosis ; Community attitudes ; Data analysis ; Diagnosis ; diagnosis delay ; diagnosis disclosure ; Disabilities ; Disclosure ; Experience ; Female ; Humans ; Interpretative phenomenological analysis ; Interviews ; Labeling (of Persons) ; Late Adolescents ; Male ; Medical diagnosis ; Medical research ; Parent-Child Relations ; Perceptions ; Personal experiences ; Phenomenography ; Phenomenology ; Retrospective Studies ; Self perception ; Stereotyping ; Time Factors ; Truth Disclosure ; Wales ; Young Adults ; Young people ; Youth</subject><ispartof>Journal of intellectual & developmental disability, 2008-06, Vol.33 (2), p.99-107</ispartof><rights>2008 Informa UK Ltd All rights reserved: reproduction in whole or part not permitted 2008</rights><rights>2008 Australasian Society for the Study of Intellectual Disability Inc. 2008</rights><rights>Copyright Taylor & Francis Ltd. Jun 2008</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c605t-e914f30c595b94c6dc2466bdb433bb30d90f1452fd84e8fc071c13bf83a67bda3</citedby><cites>FETCH-LOGICAL-c605t-e914f30c595b94c6dc2466bdb433bb30d90f1452fd84e8fc071c13bf83a67bda3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.tandfonline.com/doi/pdf/10.1080/13668250802010394$$EPDF$$P50$$Ginformahealthcare$$H</linktopdf><linktohtml>$$Uhttps://www.tandfonline.com/doi/full/10.1080/13668250802010394$$EHTML$$P50$$Ginformahealthcare$$H</linktohtml><link.rule.ids>314,776,780,27901,27902,30976,30977,59620,60409,61194,61375</link.rule.ids><backlink>$$Uhttp://eric.ed.gov/ERICWebPortal/detail?accno=EJ799329$$DView record in ERIC$$Hfree_for_read</backlink><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/18569397$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Huws, Jaci C.</creatorcontrib><creatorcontrib>Jones, Robert S. P.</creatorcontrib><title>Diagnosis, disclosure, and having autism: An interpretative phenomenological analysis of the perceptions of young people with autism</title><title>Journal of intellectual & developmental disability</title><addtitle>J Intellect Dev Disabil</addtitle><description>Background Although there is extensive research examining parental experiences of assessment and diagnosis of autism, there is a paucity of research from the perspective of individuals with autism.
Method Semi-structured interviews were conducted with nine young people with high functioning autism who were capable of providing a verbal account of their perceptions of autism and diagnosis experiences. Data were analysed using interpretative phenomenological analysis.
Results Diagnosis, and the disclosure of the diagnosis of autism, were embedded in respondents' perceptions of "having" autism. This superordinate theme included five themes: (i) disclosure delay, (ii) providing explanations, (iii) potential effects of labelling, (iv) disruptions and opportunities, and (v) acceptance and avoidance.
Conclusion In relation to the existing literature, it is suggested that the effects of diagnosis, or disclosure of diagnosis, from the perspective of the person with autism be given greater consideration.</description><subject>Adaptation, Psychological</subject><subject>Adolescent</subject><subject>Adult</subject><subject>Attitudes</subject><subject>Attitudes toward Disabilities</subject><subject>Autism</subject><subject>Autism spectrum disorders</subject><subject>Autistic Disorder - diagnosis</subject><subject>Autistic Disorder - psychology</subject><subject>Clinical Diagnosis</subject><subject>Community attitudes</subject><subject>Data analysis</subject><subject>Diagnosis</subject><subject>diagnosis delay</subject><subject>diagnosis disclosure</subject><subject>Disabilities</subject><subject>Disclosure</subject><subject>Experience</subject><subject>Female</subject><subject>Humans</subject><subject>Interpretative phenomenological analysis</subject><subject>Interviews</subject><subject>Labeling (of Persons)</subject><subject>Late Adolescents</subject><subject>Male</subject><subject>Medical diagnosis</subject><subject>Medical research</subject><subject>Parent-Child Relations</subject><subject>Perceptions</subject><subject>Personal experiences</subject><subject>Phenomenography</subject><subject>Phenomenology</subject><subject>Retrospective Studies</subject><subject>Self perception</subject><subject>Stereotyping</subject><subject>Time Factors</subject><subject>Truth Disclosure</subject><subject>Wales</subject><subject>Young Adults</subject><subject>Young people</subject><subject>Youth</subject><issn>1366-8250</issn><issn>1469-9532</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2008</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><recordid>eNqNkUtv1DAUhSMEoqXwA5AQiliw6oBfcWxgU0rLQ5XYwNpy_Ji4cuJgO61mzw_HMxlRHuKxsHzl852j63ur6iEEzyBg4DnElDLUlBIBCDAnt6pDSChf8Qaj26Uu-moLHFT3UroEABAMmrvVAWQN5Zi3h9XXN06ux5BcOq61S8qHNEdzXMtR1728cuO6lnN2aXhRn4y1G7OJUzRZZndl6qk3YxjK8WHtlPTFJf2mZNXB1rkvgInKTNmFcfe0CXPJm0yYvKmvXe732ferO1b6ZB7s76Pq8_nZp9N3q4uPb9-fnlysFAVNXhkOicVANbzpOFFUK0Qo7XRHMO46DDQHFpIGWc2IYVaBFiqIO8uwpG2nJT6qni65UwxfZpOyGMqXjfdyNGFOgnKEGYPkn2DTIkQBoQV88gt4GeZYppAEgoQTBhtUILhAKoaUorFiim6QcSMgENtFit8WWTyP98FzNxh949hvrgCPFsBEp77LZx9azjHiRT5f5Di4LOQkbRZ9zlMSWmYp3GjDTglxLXRw204whlQ44wssECi9sLaBJej1j0HGTf8XtJCQMrpr9tUSsuDyOkSvRZYbH6KNclQuCfy3Ybz8yd4b6XOvZDQ34_6z-xtyV_mO</recordid><startdate>200806</startdate><enddate>200806</enddate><creator>Huws, Jaci C.</creator><creator>Jones, Robert S. P.</creator><general>Informa UK Ltd</general><general>Routledge</general><general>Taylor & Francis, Ltd</general><general>Taylor & Francis Ltd</general><scope>7SW</scope><scope>BJH</scope><scope>BNH</scope><scope>BNI</scope><scope>BNJ</scope><scope>BNO</scope><scope>ERI</scope><scope>PET</scope><scope>REK</scope><scope>WWN</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7QJ</scope><scope>K9.</scope><scope>7X8</scope></search><sort><creationdate>200806</creationdate><title>Diagnosis, disclosure, and having autism: An interpretative phenomenological analysis of the perceptions of young people with autism</title><author>Huws, Jaci C. ; Jones, Robert S. P.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c605t-e914f30c595b94c6dc2466bdb433bb30d90f1452fd84e8fc071c13bf83a67bda3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2008</creationdate><topic>Adaptation, Psychological</topic><topic>Adolescent</topic><topic>Adult</topic><topic>Attitudes</topic><topic>Attitudes toward Disabilities</topic><topic>Autism</topic><topic>Autism spectrum disorders</topic><topic>Autistic Disorder - diagnosis</topic><topic>Autistic Disorder - psychology</topic><topic>Clinical Diagnosis</topic><topic>Community attitudes</topic><topic>Data analysis</topic><topic>Diagnosis</topic><topic>diagnosis delay</topic><topic>diagnosis disclosure</topic><topic>Disabilities</topic><topic>Disclosure</topic><topic>Experience</topic><topic>Female</topic><topic>Humans</topic><topic>Interpretative phenomenological analysis</topic><topic>Interviews</topic><topic>Labeling (of Persons)</topic><topic>Late Adolescents</topic><topic>Male</topic><topic>Medical diagnosis</topic><topic>Medical research</topic><topic>Parent-Child Relations</topic><topic>Perceptions</topic><topic>Personal experiences</topic><topic>Phenomenography</topic><topic>Phenomenology</topic><topic>Retrospective Studies</topic><topic>Self perception</topic><topic>Stereotyping</topic><topic>Time Factors</topic><topic>Truth Disclosure</topic><topic>Wales</topic><topic>Young Adults</topic><topic>Young people</topic><topic>Youth</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Huws, Jaci C.</creatorcontrib><creatorcontrib>Jones, Robert S. P.</creatorcontrib><collection>ERIC</collection><collection>ERIC (Ovid)</collection><collection>ERIC</collection><collection>ERIC</collection><collection>ERIC (Legacy Platform)</collection><collection>ERIC( SilverPlatter )</collection><collection>ERIC</collection><collection>ERIC PlusText (Legacy Platform)</collection><collection>Education Resources Information Center (ERIC)</collection><collection>ERIC</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Applied Social Sciences Index & Abstracts (ASSIA)</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>MEDLINE - Academic</collection><jtitle>Journal of intellectual & developmental disability</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Huws, Jaci C.</au><au>Jones, Robert S. P.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><ericid>EJ799329</ericid><atitle>Diagnosis, disclosure, and having autism: An interpretative phenomenological analysis of the perceptions of young people with autism</atitle><jtitle>Journal of intellectual & developmental disability</jtitle><addtitle>J Intellect Dev Disabil</addtitle><date>2008-06</date><risdate>2008</risdate><volume>33</volume><issue>2</issue><spage>99</spage><epage>107</epage><pages>99-107</pages><issn>1366-8250</issn><eissn>1469-9532</eissn><coden>JIDDFG</coden><abstract>Background Although there is extensive research examining parental experiences of assessment and diagnosis of autism, there is a paucity of research from the perspective of individuals with autism.
Method Semi-structured interviews were conducted with nine young people with high functioning autism who were capable of providing a verbal account of their perceptions of autism and diagnosis experiences. Data were analysed using interpretative phenomenological analysis.
Results Diagnosis, and the disclosure of the diagnosis of autism, were embedded in respondents' perceptions of "having" autism. This superordinate theme included five themes: (i) disclosure delay, (ii) providing explanations, (iii) potential effects of labelling, (iv) disruptions and opportunities, and (v) acceptance and avoidance.
Conclusion In relation to the existing literature, it is suggested that the effects of diagnosis, or disclosure of diagnosis, from the perspective of the person with autism be given greater consideration.</abstract><cop>England</cop><pub>Informa UK Ltd</pub><pmid>18569397</pmid><doi>10.1080/13668250802010394</doi><tpages>9</tpages></addata></record> |
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| subjects | Adaptation, Psychological Adolescent Adult Attitudes Attitudes toward Disabilities Autism Autism spectrum disorders Autistic Disorder - diagnosis Autistic Disorder - psychology Clinical Diagnosis Community attitudes Data analysis Diagnosis diagnosis delay diagnosis disclosure Disabilities Disclosure Experience Female Humans Interpretative phenomenological analysis Interviews Labeling (of Persons) Late Adolescents Male Medical diagnosis Medical research Parent-Child Relations Perceptions Personal experiences Phenomenography Phenomenology Retrospective Studies Self perception Stereotyping Time Factors Truth Disclosure Wales Young Adults Young people Youth |
| title | Diagnosis, disclosure, and having autism: An interpretative phenomenological analysis of the perceptions of young people with autism |
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