12. Miss E feels she should have been diagnosed with autism. There are different types of autism including atypical autism and Asperger's syndrome. Section 1.2 of the NICE guidance explains how to assess adults with possible and suspected autism.
13. Section 1.2.8 of the NICE guidance says
To aid more complex diagnosis and assessment for adults, consider using a formal assessment tool, such as:
• the following tools for people who do not have a learning disability:
o the Adult Asperger Assessment (AAA; includes the Autism-Spectrum Quotient [AQ] and the Empathy Quotient [EQ])
o the Autism Diagnostic Interview – Revised (ADI-R)
o the Autism Diagnostic Observation Schedule – Generic (ADOS-G)
o the Asperger Syndrome (and high-functioning autism) Diagnostic Interview (ASDI)
o the Ritvo Autism Asperger Diagnostic Scale – Revised (RAADS-R)
14. The Trust assessed Miss E using the Autism Diagnosis Observation Schedule – Second Edition (ADOS-2) and the Autism Diagnostic Interview - Revised Edition (ADI-R). It also used the AAA tool. The Trust’s approach was in line with the NICE guidance.
Adult Asperger’s Assessment (AAA) scores
15. In the AAA, Miss E scored 46 out of 50 on the Autism Quotient (80% of AS patients score 32 or more). She scored 16 out of 80 on the Empathy Questionnaire (80% of AS patients score 30 or less). Miss E scored 24 out of 31 on the Relatives Questionnaire (87.5% of children with AS score 15 or more).
16. When considered in isolation, Miss E’s scores could indicate she may have a diagnosis of Asperger’s syndrome. Point 32 of the GMC guidance says doctors must give patients the information they want or need to know in a way they can understand.
17. The Trust’s report did not make any explicit reference to Miss E’s AAA scores and why these did not specifically indicate she has a diagnosis of Asperger's syndrome. It has since told us its ‘conclusions were reached after considering a wider compendium of information, which included AAA’. Our adviser said the Trust’s explanation is adequate as to why it concluded that Miss E does not have a diagnosis of ASD, despite her AAA tool scores being consistent with indicating a diagnosis of Asperger’s syndrome.
18. However, the Trust does not believe ‘having a specific explanation about why their conclusions differed from the AAA explicitly is necessary or standard practice’. We do not consider this to be in line with the GMC guidance. This is a failing in the Trust’s communication.
19. Miss E says the Trust’s diagnostic report caused confusion. We recognise the Trust’s report should have been clearer. Had this happened, it is likely Miss E would have understood why she was not diagnosed with Asperger’s syndrome. We hope our analysis will provide some clarity for Miss E. We have made recommendations to ensure the Trust learns from this complaint.
Concerns about diagnosis of social anxiety disorder
20. After the Trust diagnosed Miss E with social anxiety disorder, she told the Trust she was unhappy about this. Our Principles say organisations should consider the complainant’s views, investigate complaints fairly and give clear, evidence-based explanations for their decisions.
21. The NHS Complaints Regulations say complaint responses must include ‘the conclusions reached in relation to the complaint, including any matters for which the complaint specifies, or the responsible body considers, that remedial action is needed’. The Trust’s complaint response did not specifically refer to the diagnosis of social anxiety disorder. This was not in line with our Principles or the NHS Complaints Regulations.
22. The Trust has since told us examples of how Miss E meets the diagnostic criteria for social anxiety disorder ‘are scattered throughout the report’. It said this was why no further explanation was given in the formulation section of its report. This was not in line with the GMC guidance on communication so this is another failing.
23. The Trust should have included its justification for making the diagnosis of social anxiety disorder in the formulation section of the assessment report. This would have helped Miss E understand how the Trust reached its decision.
24. Our adviser said the examples in the report are sufficient to explain why Miss E was diagnosed with social anxiety disorder. As such, we cannot say there is any indication of a failing in the diagnosis given by the Trust. We understand Miss E may disagree with this.
25. The Trust told us ‘the fact that the reasons of the social anxiety disorder were so exhaustively discussed with Ms E during her last appointment may have led the authors to a sense of false assurance and therefore not fully listed them as well as [you] have suggested in the formulation section of the report.’ We have made recommendations to the Trust to ensure its communication is clearer in future.