Time taken
17. Miss T has raised concerns about the time taken to complete her autism assessment. She says the assessment lasted only 50 minutes and she felt it was rushed. She also raises concerns PUK did not consider her poor working memory and put her on the spot whilst asking her questions. As Miss T felt rushed she says she was not allowed to fully explain her answers to the questions.
18. We are sorry to hear about Miss T’s experience. We understand how believing the assessment was rushed would have caused distress, upset and worry about what impact this would have on her future support.
19. PUK says it explained to Miss T at the start of the assessment that the assessment would take 50 minutes, and also added Miss T did answer some of the questions very quickly.
20. PUK says, ‘We do explain that we may ask questions they are not expecting that are connected to mental health and explain that this is because we need to look at other conditions that may present like ASD.’
21. The NICE guidance says, ‘assessment should include, at a minimum, a clinical interview, behavioural observation, integration of developmental and corroborative information, use of validated assessment tools, a broader assessment of clinical presentation (such as estimated intellectual functioning or sensory processing) and additional liaison with referrers and other involved service.’
22. Our adviser says while there is no guidance on how long an assessment should be it needs to be a sufficient length to complete a clinically valid assessment. They added in practice an assessment needs more than one appointment to meet the minimum requirement and this assessment was not of sufficient length to gather the breadth of information required for a comprehensive assessment.
23. They told us Miss T’s assessment should have followed the NICE guidance which says, ‘To organise and structure the process of a more complex assessment, consider using a formal assessment tool, such as the Diagnostic Interview for Social and Communication Disorders (DISCO), the ADOS-G or the ADI-R’.
24. Our adviser says using interview and clinical opinion, rather than a formal assessment tool, provides limited ability to establish the presence of the clinical features in relation to standardised data. They added as an assessment tool was not completed there is a level of subjectivity of the assessment, increasing the likelihood of false positive or false negative outcomes.
25. We understand PUK has said Miss T answered the questions very quickly however it has also added, ‘if we are satisfied that we have all of the information we can get, will move on.’
26. Our adviser agreed with this and said it is up to the assessing clinician to make a clinical evaluation about the quality and accuracy of the information. Therefore, even if the patient is answering quickly, it would be up to the clinician to see if this is impacting the assessment in any way.
27. The report on the assessment does not indicate Miss T was showing any signs of answering quickly or being rushed. The report says, ‘Her speech was clear and articulate and of normal rate and volume’.
28. We were sorry to hear Miss T felt rushed. We have not taken a view on whether Miss T was not allowed to fully answer questions because the available evidence does not allow us to take a robust view on that. However, given the assessment took place during a 50 minute assessment and taking into account the clinical advice outlined above that Miss T required a comprehensive assessment using a formal assessment tool, we consider a robust assessment could not have been completed in this time. This could understandably have led Miss T and her father to feel like the assessment had been rushed.
29. We have considered what Miss T told us about her poor working memory not being considered as part of PUK’s assessment. We have not seen any evidence this was noted by the clinician.
30. Our adviser says the assessment should have taken into account Miss T’s potential diagnosis of autism, her masking and processing difficulties.
31. We consider there has been a failing in this part of the complaint. We understand it is the judgement of the assessing clinician to decide whether they have all of the information they need and PUK believes it did. However, given the time taken to complete the assessment we do not consider a full, comprehensive assessment could have taken place.
32. We will consider the impact on Miss T later.
Parental input
33. Miss T and her father have raised concerns PUK did not want her parents’ input during the assessment.
34. We understand how frustrating and upsetting this would have been for Miss T and her parents and how they would have liked to have given their input during this assessment.
35. PUK says Miss T’s parents were allowed to give their input but, on many occasions, their answer differed to the one given by Miss T. We can see this happened for two questions within the assessment which were regarding Miss T’s attention to detail and remaining seated in certain situations. However, we also found Miss T and her parents provided the same answers for a number of questions including Miss T feeling restless, organising tasks and being distracted.
36. The NICE guidance says, ‘Siblings, partners or friends may provide corroborative information’.
37. The NICE guidance also says, ‘where possible involve a family member, partner, carer or other informant or use documentary evidence (such as school reports) of current and past behaviour and early development’.
38. As stated previously we consider a standardised assessment should have been used. The DISCO, ADOS-G or the ADI-R all require standardised semi-structured interviews with both the person being assessed and their parents.
39. Mr L raised concerns during the assessment specifically around his daughter’s masking. Whilst this is noted within PUK’s assessment report, we have not seen any evidence PUK explored any concerns raised by Miss T’s parents in further detail. We consider this further below.
40. We consider there has been a failing here. The NICE guidance says parents need to be involved and whilst they were present, we have not seen any evidence the information they presented was considered further and this would need to be the case to fully adhere to this guidance.
41. We will consider the impact this had on Miss T later.
Masking
42. Miss T has said PUK did not adjust the assessment for her masking.
43. We again understand how frustrating this would have been for Miss T and added to her and her family’s concerns she did not receive a thorough and proper assessment.
44. PUK wrote in its report, ‘It is also noted by her parents that she may be masking some difficulties, but these do not amount to the persistent deficits or restricted, repetitive patterns characteristic of ASD’.
45. We can see within the questionnaire completed by Miss T’s parents reference to her being a ‘great masker’ and ‘unmasking has stopped her from continuing her a-levels’. It is also noted during a post meeting conversation her head of year at school also saw this too.
46. Our adviser said based on the information provided by Miss T’s parents PUK should have explored masking more rigorously. This could have been done through the use of the CAT-Q (categorising autistic traits) questionnaire which is specifically designed to measure masking and camouflaging in females with autism. The CAT-Q is used to help identify individuals who may not meet the diagnostic criteria for autism due to their ability to mask symptoms and behaviours.
47. A study carried out in 2019 supported the use of the CAT-Q in adults who show signs of masking. The study ‘provides robust psychometric support for the CAT-Q’ for patients who show camouflaging techniques such as masking.
48. The CAT-Q was not considered or used by PUK. We have seen no evidence to suggest further exploration of Miss T’s masking was considered or investigated by PUK. Therefore, we consider there is a failing here.
Impact
49. We consider there are failings with the time PUK took to complete Miss T’s autism assessment, in PUK not considering Miss T’s parent’s input, her masking or her poor working memory.
50. Miss T says PUK’s actions caused her upset and lowered her confidence. She felt rushed and was not allowed to fully explain her answers to the questions. In the short term this negatively impacted her relationship with her parents because she believed her parents should have supported her more during the assessment.
51. She says PUK’s failings mean its assessment that she does not have autism is not robust.
52. She is unhappy as she was expecting to find out potential reasons for her behaviours, and she wanted support to be able to spot any triggers for this. Her mental health has been negatively impacted as she feels she is not getting the support she needs for autism.
53. Miss T says that without an autism diagnosis she is unable to access additional support at university.
54. Following the autism assessment carried out by PUK, Miss T was found not to have autism. However, as there have been several failings with how the assessment was carried out, this leaves doubt about the robustness of the assessment. We cannot say Miss T should have been diagnosed with autism, had the assessment happened as it should have. We therefore also cannot say there has been a lost opportunity for her to receive support as a result of her diagnosis.
55. We consider this has left Miss T and her family with questions about her behaviour and has meant she is worried that she potentially should be receiving care and support which she is not able to access at this time.
56. We consider there has been a missed opportunity to provide Miss T with answers to her behaviour.
57. With regards to support she is receiving at university, we understand Miss T was receiving a mentor and note taker in the last academic year which was provided by her university’s student services. We understand Mr L was worried his daughter would struggle with support for the next academic year without a diagnosis in place. We understand this would be worrying for him and for Miss T. Even though we consider there has been failings with how PUK carried out the assessment we cannot say this means the outcome it provided was incorrect. We therefore cannot say there has been a lost opportunity for Miss T to receive further support at university.
58. We therefore consider the failings with how the autism assessment was carried out by PUK has caused Miss T and her father to still not have a full understanding on whether she has autism or not. We also consider the failings impacted Miss T’s trust in the system and in her family at the time.
59. Within its responses to Miss T and her father PUK has not accepted any failings with the way in which the autism assessment was conducted. We consider the impact to Miss T has been left unremedied.