South West Yorkshire Partnership NHS Foundation Trust

5. Mr R complains that his autism assessment in October 2024 was completed poorly and that the Trust subsequently refused his request for another assessment. Mr R says that as a result, he has not received a diagnosis of autism and has consequently been unable to access reasonable adjustments in his daily life, for aspects which require a formal diagnosis. As a result, he says that his mental health has suffered.

6. In addition, Mr R complains that the Trust did not correctly manage or respond to his complaints. He says this forced him into a prolonged process to try and resolve his concerns and that this has also worsened his health.

7. Mr R seeks an apology, service improvements and financial remedy.

8. Mr R, who had had an established diagnosis of anxiety and depression, was referred to the autism assessment service at the Trust by his GP practice and attended a consultation in October 2024.

9. In advance of the screening assessment, the assessor asked Mr R to complete questionnaires, including the Autism Spectrum Quotient (AQ) and Empathy Quotient (EQ). They also spoke with his mother, to gather details from his early developmental stage.

10. The screening assessment lasted around two and a half hours and also included consideration of observed interactions and use of the Adult Asperger’s Assessment (AAA) tool.

11. Mr R reported that he had experienced several social difficulties, including having high levels of anxiety in social situations, issues with initiating conversations and regulating emotions.

12. The assessor discussed their findings with the service’s Multi-Disciplinary Team (MDT) and concluded that Mr R did not meet the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) diagnostic criteria for autism. The DSM-5 is a guide published by the American Psychiatric Association and used by mental health professionals to diagnose conditions. It lists the symptoms and criteria for each mental health condition.

13. The assessor recommended that Mr R’s GP considers further mental health assessment to explore alternative explanations for his difficulties, including possible personality disorder traits.

14. Mr R told us that since receiving the outcome of his screening assessment, his GP has approved a referral for another assessment for autism via the Right to Choose (RtC) pathway. The RtC (set out in the NHS Constitution and the NHS Constitution Handbook) gives patients in England the right to choose to have their first NHS outpatient appointment with a service led by a consultant or named health care professional from any clinically appropriate organisation or team that holds a qualifying NHS contract to provide the care and treatment they need. Mr R told us that he is awaiting this RtC assessment.

18. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. If what happened fell far short of what should have happened, we call this a failing. We also look at whether what happened had a negative impact on the person in question. If we think it did, we will go on to consider what, if anything, the organisation has done to try to put things right.

19. If we think there was a failing, and that this had an impact that has not been put right, we will usually investigate in more detail.

The autism screening assessment

20. Mr R told us that he felt that the assessment outcome was wrong and that the assessor had dismissed his autistic traits due to ‘reverse diagnostic overshadowing’. He feels that because of this, autism itself was not recognised because prior diagnoses were seen as sufficient explanations for his difficulties. He also said that appropriate steps were not taken to allow for masking of autism symptoms, for example, by using the Camouflaging Autistic Traits Questionnaire (CAT-Q). Mr R provided us with a detailed set of reasons for why he thinks his assessment was not properly conducted and evaluated, including that there were inaccurate references to a childhood friend, misrepresentation of his GCSE results, the recording of a childhood allegation as an established fact and that he was not given the opportunity to contribute to the historical evidence.

21. Mr R requested a new clinical reassessment by an autism-specialist psychiatrist.

22. The Trust explained that a further opinion was not clinically appropriate as they said that the original assessment had followed guidelines and that the information collected was extensive. It concluded that the difficulties Mr R experienced are more attributable to mood, anxiety and trauma-related factors rather than a neurodevelopmental disorder. It said that all clinicians involved in adult autism assessments receive training on how to identify masking behaviours. The Trust said that in Mr R’s assessment, an observational method based on CAT-Q was used to check for signs of masking and that none were identified.

23. Our adviser said that they could not see anything to indicate that masking had been present in Mr R during the screening assessment. They added that with masking, there is typically evidence of a person showing signs of exhaustion/burnout by the effort of sustaining this over a prolonged period, but none was noted.

24. The NICE guidance states that a comprehensive assessment of autism should include enquiries and assessment of core autism features, early developmental history, behavioural problems, functioning at home, in education and in employment, past and current physical and mental disorders, other neurodevelopmental conditions, sensory sensitivities and attention to detail.

25. The NICE guidance also says that to aid more complex diagnosis and assessment for adults, assessors should consider using a formal assessment tool, such as AAA or the Autism Diagnostic Interview (ADI-R). It states that account should be taken for possible differential diagnoses, such as mental disorders.

26. Our adviser noted that Mr R’s assessor used recognised and recommended tools, a structured, in-person interview, consideration of early developmental history and use of DSM-5 criteria. They said that the assessment was comprehensive, followed the guidance and that no tests or considerations appear to have been omitted.

27. Our adviser explained that there are several criteria to work through as part of the assessment against DSM-5 criteria. They said that they could see that the assessor had provided clear reasoning and examples for each aspect of the criteria. They added that to receive a diagnosis of autism, a person would need to demonstrate convincing evidence of satisfying each criteria, including during the early developmental stage of life.

28. Our adviser said that there was hardly any evidence to support Criteria B (restricted and repetitive patterns of behaviour and interests). For example, they highlighted that they could not see any evidence that supported Mr R’s interest in gaming reaching the threshold for ‘abnormal focus’. For context, they added that gaming can be considered a common and socially popular pastime. Our adviser considered that whilst they can see that Mr R has some traits which are consistent with autism, there is not enough to support a diagnosis.

29. Mr R said that he felt his mother’s input had been given more weight than his own and that he thought this was not in line with the guidance.

30. The Trust said that in autism assessments, information about early childhood is very important, as autism is a neurodevelopmental condition, meaning that it starts in early life and shows up in behaviours, communication and relationships from a young age. They said that Mr R’s mother’s views were considered as part of a wider picture, to aid understanding of Mr R’s early development, where direct observation is not possible.

31. Our adviser agreed that early developmental evidence matters in an autism assessment. They said that whilst Mr R’s mother mentioned issues with sleeping and eating at age three, there are many possible explanations for this. They noted a lack of evidence of developmental issues between age three and ten and that the changes in behaviour (becoming increasingly withdrawn and struggling to manage anger) his mother recalled happening when Mr R was ten or eleven could have many possible explanations.

32. Mr R also questioned why his Social Responsiveness Scale, Second Edition (SRS-2) scores were not given appropriate weight, despite being in the moderate to severe range. The Trust reassured him that SRS-2 scores were considered as an important part of the wider picture, alongside the other aspects of the assessment process. They added that they also considered the impact of anxiety and depression on social functioning and responsiveness.

33. Our adviser said that it is a clinical judgement as to whether an individual’s characteristics achieve the diagnostic threshold of a significant impairment. They were clear that a diagnosis of autism can only be made by clinical judgement, not by numbers. So, while the scores from questionnaires and tools provide useful information, guidance dictates that clinical judgement is key.

34. Mr R questioned whether it was appropriate for the assessor to conclude that conditions he had already been diagnosed with explain some of the difficulties he is presenting with. The Trust said that the assessment was not about whether Mr R faces difficulties, it was about finding the best explanation for Mr R’s difficulties, based on the full picture of his development, current functioning, and emotional world.

35. Section 1.2.10 of the NICE guidance requires that assessors take into account and assess for possible differential diagnoses. Our adviser said that the inclusion of the Generalised Anxiety Disorder assessment (GAD-7) (to screen for, and measure severity of, generalised anxiety disorder), Patient Health Questionnaire (PHQ-9) (to check for depression), Iowa Personality Disorder Tool (IPDT) (to evaluate the potential presence of a personality disorder) and other tools within the screening assessment were therefore in line with guidance and noted that Mr R had scored highly in these three tools. 1.2.7 of the NICE guidance requires that assessors enquire about, and assess, past and current physical and mental disorders. So, they said that consideration of alternative explanations for Mr R’s difficulties was in line with the guidance.

36. Having carefully considered all of the evidence, including Mr R’s detailed points as to why he feels his assessment was done poorly, we are satisfied that the assessor followed the guidelines when conducting Mr R’s autism screening assessment. It appears that the assessor covered all of the relevant aspects before reaching their conclusion that Mr R did not require further assessment for autism This means we have decided not to look into this complaint further or take any further action. We know this is not the outcome Mr R hoped for, as he strongly feels he should have a diagnosis of autism. We hope this explanation provides some useful information as to why that conclusion was not reached in his case.

The request for another assessment

37. In his complaint to the Trust, Mr R said that, given his concerns about the original assessment, he felt he needed an independent assessment.

38. In its letter of 8 November 2024, the Trust said that it had acted in line with the policy, by arranging for a panel of experts, including the Clinical Lead, to review the request for appropriateness.

39. The policy says what the Trust should do when someone requests a second opinion, including assessing whether anything had gone wrong in the patient’s journey to that point.

40. This is what the Trust did. And it wrote to Mr R explaining, in detail, its reasons for not providing a second opinion or reassessment. We acknowledge that Mr R strongly disagrees with the Trust’s findings.

41. Our adviser agreed that there was no evidence to suggest that an independent assessment could be justified. They said that in these circumstances, any request for an independent assessment would need to be made by Mr R’s GP. They noted that his GP did subsequently approve a RtC referral.

42. Having carefully considered the evidence, we are satisfied that the Trust acted in line with the policy and that it was correct in its decision not to provide an independent assessment.

Complaint handling

43. Mr R told us that he felt the Trust did not correctly manage or respond to his complaints. Mr R said that in its responses, the Trust avoided specific questions he raised and provided generic explanations. He added that he thought the Trust provided defensive responses and that this resulted in a long complaints process, which he says has worsened his health.

44. Our NHS Complaint Standards say organisations should give a clear, balanced account of what happened based on established facts, to provide a fair and accountable response. They also say they should take a thorough, proportionate and balanced look into the issues raised, so that the process is thorough and fair.

45. Mr R and the Trust exchanged correspondence several times. Each time, Mr R raised points relating to his assessment and the Trust responded to each of them in turn. Mr R is not happy with the responses he received so we looked at whether they were done in line with our NHS Complaint Standards.

46. We understand that going through a lengthy complaints process is not easy. We consider that the level of detail and number of concerns raised have contributed to the length of time it took for Mr R to complete the local resolution process.

47. The Trust answered Mr R’s questions about his assessment and concluded, as we did, that it had been conducted in line with guidance. We understand Mr R’s frustration that the Trust responses did not align with his view of events. However, since we have sought clinical advice and independently reached the same conclusion as the Trust, we consider that the content of the Trust responses were clear and based on the established facts, in line with NHS Complaint Standards. Although the answers may not have contained the level of detail Mr R had hoped for, we think they contained an appropriate, proportionate level of detail.

48. We recognise that Mr R has put considerable effort into raising his concerns and is unhappy with the answers he received. We hope that our checks provide reassurance and help him move on.

1. We have carefully considered Mr R’s complaint about the Trust.

2. We think that the Trust conducted Mr R’s autism screening assessment in October 2024 appropriately, made its decision about his request for another assessment in line with Trust policy and handled his complaint well.

3. We have, therefore, decided not to investigate in more detail or take any further action.

4. We recognise how important this complaint is to Mr R and understand the disappointment and frustration he feels that he has not received a diagnosis, despite suffering symptoms which he believes are explained by autism. We do not underestimate how difficult it is to endure such difficulties and the effects these have had on his day-to-day life.