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Towards equity in the process to a diagnosis: How children are given a diagnosis of an Autistic Spectrum Disorder or Autism in the London borough of Greenwich.

Leather, S.; (2005) Towards equity in the process to a diagnosis: How children are given a diagnosis of an Autistic Spectrum Disorder or Autism in the London borough of Greenwich. Masters thesis , University of London.

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Abstract

Main research question Is either ethnic minority status or non-English speaking status associated with delay in diagnosis of an Autistic Spectrum Disorder (including Autism) in the London Borough of Greenwich Methodology The study used information collected through a retrospective case note analysis and a parental questionnaire. The study population is children under 16 years resident within the Borough with a diagnosis of Autistic Spectrum Disorder or Autism given before August 2004 through the NHS. Data was collated on an SSPS database, to display results using descriptive statistics. Results 144 children were identified as eligible for the study population. 128/144 (88.9%) case notes were reviewed. 53 (36.8%) questionnaires were returned including 8 of 9 non-English speaking families. 64 (44.5%) of children were from an Ethnic minority background (Study sample) and 67 (46.5%) were from a White British background (Control group). For children subsequently given a diagnosis of Autism, the mean age of presentation to a professional with relevant concerns was 30 months (range 6 - 84) and the mean age of diagnosis was 53 months (range 26 - 141). 96% of those with a subsequent diagnosis of Autism had presented to a professional by 42 months. The mean age of diagnosis of Asperger's syndrome was 99 months (range 54 - 154). Without adjustments, there was no significant difference in the age of presentation or the age of diagnosis between Study sample and Control group. However, the mean age of presentation of non-English speaking families was 34 months and significantly different from 27 months for Bilingual families. Maternal education was associated with a significant difference in time from presentation to diagnosis (12.8 months), suggesting inequity in this respect. Only one of two parents was present at the Diagnostic assessment of 45/ 122 (31%) children. 56% of parents reported that professional support given around diagnosis was 'good enough', 'good' or 'very good'. 44% reported support was not enough or none. 9/25 (36%) of the Study group compared to 3/26 (11.5%) of the Control group had not heard of Autism prior to the diagnosis. 7/7 (100%) of the non-English speaking families stated they had not heard of Autism prior to diagnosis. 11/25 (44%) of the Study group compared to 16/26 (61.5%) of the Control group suspected their child had Autism ahead of the diagnosis. Ethnic minority status doesnot appear to be associated with a delay in diagnosis of an Autistic Spectrum Disorder in the Borough. Discussion Most children have been presented to professionals with relevant concerns before starting school. However, the time it has taken to diagnosis results in the mean age of diagnosis generally being above that now taken in other areas. Parents should, but are not consistently, both be present (if applicable) when important news is given. Many parents are concerned how news is given and the provision for ongoing support. Information is a priority for families with children with a suspected or new diagnosis of Autism and does not appear to be given early enough, consistently and in an appropriate language. Lower awareness of Autism and less expectation of this diagnosis among families of Ethnic minority background may reflect a need for more consistent good communication along the process to a diagnosis. Recommendations Cultural competency and cultural sensitivity are very important in the light of the increasingly diverse population resident in the Borough. Further research regarding parental views of and access to diagnostic and support services is needed. Parents, including those from different ethnic and language backgrounds, are willing and should be encouraged to participate in the development of diagnostic and support services and in the training of practitioners. The Special Needs Register is a useful tool for audit, research and service planning but more robust systems need to be in place to ensure it is updated adequately.

Type: Thesis (Masters)
Title: Towards equity in the process to a diagnosis: How children are given a diagnosis of an Autistic Spectrum Disorder or Autism in the London borough of Greenwich.
Identifier: PQ ETD:592237
Language: English
URI: http://discovery.ucl.ac.uk/id/eprint/1444927
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