Concerns relating to the ASD assessment
20. Mrs X raises concerns about the way her ASD assessment was completed on the 4 April 2024. Mrs X says her concerns were not listened to or acknowledged during this assessment. As a result of this, she disputes the outcome of the assessment.
21. The Trust says it its complaint response which is documented in the patient portal dated 2 September 2024:
‘After reviewing your case, including the notes, reports and information provided before and during the assessment, we are confident that the outcome was appropriate based on the entirety of the information available’.
22. We are unable to reach a decision on the outcome of the assessment as this is based on clinical interpretation however, we can consider if the Trust completed this in line with national guidelines.
23. We have obtained clinical advice from our adviser to assist us with this consideration.
24. NICE guidance ‘autism spectrum disorder in adults: diagnosis and management’ [CG142] provides guidance on how the assessment should be conducted. In section ‘Comprehensive (diagnostic, needs and risks) assessment of suspected autism it says:
1.2.5 A comprehensive assessment should:
• be undertaken by professionals who are trained and competent • be team-based and draw on a range of professions and skills • where possible involve a family member, partner, carer or other informant or use documentary evidence of current and past behaviour and early development.
25. The report documents it was completed by two clinicians. This was a consultant psychiatrist and an ASD specialist nurse. There is no evidence to suggest these professionals were not trained or competent to complete the assessment.
26. The clinicians were also from different fields and therefore demonstrates that the assessment was ‘team based’ and ‘drew on a range of professionals and skills’.
27. We can also see evidence that input was obtained from Mrs X’s mother who completed both a detailed questionnaire and an Autism Quotient Screening tool (AQ50) prior to an in-person assessment. We consider these actions to be line with section 1.2.5 of the above referenced NICE [CG142] guidelines.
28. Section 1.2.7 of NICE [CG142] guidance says that during a comprehensive assessment, professionals should enquire about and assess the following: • core autism features that have been present in childhood and continuing into adulthood • early developmental history, where possible • behavioural problems • functioning at home, in education or in employment • past and current physical and mental disorders • other neurodevelopmental conditions • hyper- and/or hypo-sensory sensitivities and attention to detail
29. Section 1.2.8 says ‘to aid more complex diagnosis and assessment for adults consider using a formal assessment tool such as the Autism-Spectrum Quotient (AQ). We can see from the evidence this is the tool that was used to complete the assessment.
30. Mrs X tells us that during the assessment she discussed episodes that had happened during her life which were autistic traits such as sensory difficulties and low self esteem. She says during the assessment these were ignored and all her symptoms were concluded to be down to her self-esteem.
31. Mrs X also says during the assessment she felt rushed, she did not understand the questions and she was shaking. We are sorry to hear how difficult this was for her.
32. We can see during the assessment there was discussions about Mrs X’s childhood and early development. This was both during the assessment but also the pre-assessment questionnaire. This included asking questions like ‘what was your mother’s pregnancy like, were there any issues or difficulties, what were you like as a baby’. There were also questions about what Mrs X did as a child such as what games she played. Following this there was discussions around her school years.
33. We can also see there was discussions about Mrs X being in employment, to which she explained she hated being there and she quickly left as she felt she was being judged for the way she was. We appreciate this must have been difficult for her.
34. There were also discussions about her time at home. This included how she spends her time, interests and diet.
35. We can see evidence of discussions around Mrs X’s sensitivities such as on the pre-assessment questionnaire it is highlighted that she did not like being around people or too much sound. She also explained she does not like slimy things and must wear gloves when washing the dishes. She also explained she is overly sensitive with the sense of smell.
36. We can also see Mrs X was asked about her health conditions to which she confirmed she suffered anxiety, social anxiety, severe depression, fibromyalgia (a long-term condition that causes pain all over the body), polycystic ovary syndrome (a condition that affects how a woman's ovaries work) and asthma.
37. We consider the professionals considered the information provided in the self-report ASC questionnaire completed by Mrs X and the informant ASC questionnaire completed by her mother. The professionals also had the results of the AQ50 screening tool which indicated significant features of autism but does not confirm its presence.
38. We can see the professionals used the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) criteria to assess Mrs X. DSM-5 criteria refers to an internationally validated criteria which assesses a person against each of the core characteristics of autism as confirmed in NHS England guidance ‘A national framework to deliver improved outcomes in all-age autism assessment pathways: guidance for integrated care boards’.
39. We have included a copy of the DSM-5 criteria in Annex A which can be found on the National Autistic Society website in section ‘Criteria and tools used in an autism assessment’.
40. We can see during the assessment the professionals made reference to characteristics that might be interpreted as supporting an autism diagnosis and balanced them against other likely potential causes, for example, that ‘social withdrawal and avoidance’ may evidence autistic traits or be influenced by negative self-beliefs. The professionals also made their own observations of Mrs X’s behaviour during the assessment, completing the information gathered and considered.
41. Having considered the above, we consider the discussions and assessment completed on the 4 April 2024 were in line with section 1.2.7 of the NICE [CG142] guidance. We find the appropriate questions were asked and there is no evidence that pertinent information was missed or ignored.
42. We are sorry to hear that Mrs X felt rushed during the assessment, did not understand the questions and was shaking. We appreciate how distressing this must have been for her as she was already discussing sensitive information.
43. We have carefully reviewed the records. Although we do not dispute Mrs X’s version of events, we have found no evidence that Mrs X was distressed during the assessment or that she was shaking.
44. Saying this we can see the report states ‘Mrs X appeared anxious throughout the assessment, an observation was supported by her fidgeting. This physical manifestation of anxiety could indicate discomfort with the assessment environment or with social interaction more broadly’.
45. We have found no evidence to suggest Mrs X did not understand the questions. There was no suggestion in the report of any difficulty communicating or difficulty understanding the questions. The following statement in the section ‘Presentation during assessment’ states ‘she demonstrated an understanding of language, demonstrating proficiency in both comprehension and expression’.
46. In addition to this, within the mental state examination it states, ‘she appeared anxious in the interview however this did not impair communication’.
47. There is no evidence of Mrs X asking to repeat questions or stating that she did not understand these.
48. Based on the above, we find no evidence to suggest that Mrs X did not understand the questions or that she was rushed. We consider there is evidence to reasonably suggest she was fidgeting. There is nothing in the records to indicate what steps, if any, the professionals took to put Mrs X at ease.
49. We have carefully considered this. There is no evidence to suggest that Mrs X’s fidgeting/shaking or anxiousness were not considered during the assessment. We can see evidence that these factors were considered alongside the core features of the DSM-5 criteria and how they affected Mrs X and ultimately if this changed the outcome of the assessment. This included Mrs X’s medical history, past and present mental health history and most importantly sensory sensitivity to environment.
50. Based on the above considerations, we have found no evidence to suggest that the ASD was not considered in line with national guidelines. We do not uphold this part of the complaint.
Concerns relating to the ADHD assessment
51. Mrs X complains that the Trust incorrectly stated that an ADHD assessment had already taken place which she says was not the case.
52. In relation to this concern, we can see that on Mrs X’s patient portal, following her raises concerns about the outcome of the ASD assessment she requested a ‘re-referral to ADHD’. This is documented to be on the 25 April 2024.
53. We can see the Trust replied on the 29 April 2024 stating ‘if you would like to be referred for ADHD, please could you upload any documentation from previous ADHD assessments? Your ASD referral mentions you had already been assessed for ADHD, which may affect our ability to accept new ADHD referral for you, so we will need to review this before we can confirm that this will be possible, under NHS guidance’.
54. We can see on the same day, 29 April 2024, Mrs X confirmed she had not been previously assessed for ADHD.
55. The Trust then replied the following day stating ‘Thanks for confirming that you have not previously had a formal ADHD assessment. If you would like to be assessed for ADHD, please ask your GP for a referral to us, under the NHS right to choose’. Within this correspondence, the Trust provided a link to the Right to choose information.
56. We have reviewed the correspondence and can see Mrs X’s GP letter which refers her to the service implies that she may have previously been assessed for ADHD. The letter dated 18 August 2023 states:
‘She is concerned she may have something like ADHD and recently had an assessment with the mental health services who have known her for sometime with regard to her anxiety. After her assessment with them they felt ADHD was unlikely’.
57. We have obtained clinical advice in relation to this.
58. We can see there is evidence in the referral that implied Mrs X had been assessed for ADHD, therefore it was reasonable for the Trust to confirm this. We can see as detailed above the Trust was able to confirm that this was not the case within a few days after discussion with Mrs X.
59. We have considered if this had any impact on how Mrs X’s ASD assessment was completed.
60. The adviser tells us that in practice both autism and ADHD are considered separately, although evidence suggests that up to 50% of patients with autism may also show signs of ADHD and there are signs of overlapping symptoms such as difficulty recognising social cues and sensory issues. This is documented in research completed by the National Library of Medicine in its article named ‘Understanding the overlap: Exploring the complex comorbidity of ASD and ADHD’. Although published in 2025, the article refers to previous research and so we feel this article I relevant to our decision.
61. Based on this it was reasonable for the Trust to have had sight of any previous ADHD assessments given that Mrs X was requesting a referral for ADHD.
62. We have found no evidence to suggest that Mrs X’s ASD assessment was considered differently because the Trust thought she had previously been assessed for ADHD.
63. Firstly, as detailed above, the discussions around the ADHD referral were held after the outcome of the ASD had been reached.
64. Secondly, we have seen no evidence in the assessment that the Trust believed Mrs X had been previously assessed for ADHD. In the report it is documented that Mrs X demonstrates possible traits of ADHD within ‘Diagnosis’ and ‘Opinion’ sections. The Trust suggests the should GP consider a referral for ADHD assessment.
65. Based on the evidence we have seen we find no evidence to suggest that the Trust considered Mrs X had previously been assessed for ADHD or that this impacted the way her ASD assessment was completed.
66. In conclusion, we do not uphold this complaint.
67. It is important to acknowledge that where we have not identified any indications that something went wrong, it does not detract from Mrs X’s experience, nor the impact this has had on her.
ANNEX A
DSM-5 criteria for autism
According to the DSM-5, the features of ‘autism spectrum disorder’ include:
• criterion A: persistent deficits in reciprocal social communication and social interaction • criterion B: restricted, repetitive patterns of behaviour, interests or activities • criterion C: symptoms must be present in the early developmental period • criterion D: symptoms cause clinically significant impairment in social, occupational, or other important areas of functioning • criterion E: these disturbances are not better explained by intellectual disability or global developmental delay.