Failure to correctly carry out an ASD assessment
16. Ms A said the Trust failed to correctly carry out U’s ASD assessment. She said the assessment was not thorough and the Trust failed to follow NICE guidelines. Ms A said the Trust misread U’s interactions, did not observe his tics, and overlooked his sensory difficulties, despite seeing evidence of this in multiple environments.
17. Ms A also told us U was masking during the school observation, as he was aware the assessor was present. Ms A said because U is sociable and interacts with people, the stereotypical views of autism trumped other obvious indicators, such as his limited understanding of social interaction and communication. She says this presented a barrier for a diagnosis and the Trust incorrectly found U did not have autism.
18. In late 2018, U had a developmental assessment by his Paediatrician. They did a full physical examination and found no concerns with his general health, no dysmorphic features, and no neurocutaneous stigmata (skin signs associated with, and may indicate, neurological, behavioural, or developmental problems). U’s Paediatrician found he presented with social communication difficulties and behavioural issues and referred him for an ASD assessment. U also has anxiety and a tic disorder.
19. The Trust completed U’s ASD assessment in 2020, and he was 8 years old at the time. As part of the assessment, the Trust obtained responses to a questionnaire from U’s school teachers. This included details about his emotional reciprocity, his ability to develop, maintain and understand relationships, his non-verbal communication behaviours, such as use of eye contact, and any repetitive or stereotyped interests and behaviours.
20. The Trust also obtained responses to a questionnaire from U’s parents. This contained details about his full developmental history, his full medical history and prenatal and perinatal information. It also included information regarding the family’s history of autism, learning difficulties and other developmental disorders, and U’s strengths and difficulties.
21. In mid-2020, a Speech and Language Therapist held an interview with Ms A for a developmental update. Four months later, the Trust received a further update from Ms A. The assessment report shows these updates focused on U’s language and communication such as eye contact, emotional reciprocity and social interaction, and developing, maintaining and understanding relationships. These updates also focused on play, imagination and creativity, and restricted and repetitive patterns of behaviour and interests.
22. Shortly after this the Trust carried out a formal observation of U using the Autism Diagnostic Observation Schedule–2 (ADOS-2). This was led by U’s Paediatrician and observed by a Child Development Practitioner. ADOS–2 is an observational assessment which focuses on traits and behaviours associated with ASD. This included semi-structured activities including games, books, and play. The ADOS–2 focused on language and communication, reciprocal social interaction, imagination and creativity, stereotyped behaviours, and restricted interests.
23. In November, the Speech and Language Therapist did a school observation of U in the classroom and on the playground. They discussed his school presentation with the Special Educational Needs Coordinator (SENCO). The observation focused on a range of topics such as attention and concentration, language and communication (including non-verbal communication), emotional reciprocity and social interaction, play, imagination and creativity, and repetitive and stereotyped interests and behaviours.
24. The Trust also carried out a review of parental and professional reports to date. The Trust produced the final assessment report in November and discussed this at a multidisciplinary team (MDT) meeting the following week. The Trust concluded that, although U presented with features commonly associated with ASD, there was not enough evidence to meet the full DSM-5 criteria. DSM-5 is a tool which sets out standardised criteria to help diagnose autism.
25. The Trust felt a further assessment of U was necessary. It decided a Child and Adolescent Mental Health Services (CAMHS) assessment would be beneficial, to consider other possible diagnoses and support for U. U’s Paediatrician completed a CAMHS referral in mid-December.
26. After the Trust’s assessment Ms A sought a private assessment from an independent child clinical psychologist, who diagnosed U with autism in the summer 2021. U eventually had an assessment with CAMHS eight months after he had been diagnosed privately. CAMHS decided it could not support U with his anxieties as these were in the context of his autism diagnosis.
27. NICE guidance says, once an autism assessment team decides to carry out an assessment, the team should seek a report from the school if one is not already available and gather any additional health or social care information. NICE guidance says, in every autism diagnostic assessment, the autism team should include:
• detailed questions about parent's concerns • details of the child's experiences of home life, education, and social care • a developmental history, focusing on developmental and behavioural features consistent with ICD-11 or DSM-5 criteria • an assessment (through interaction and observation) of social and communication skills and behaviours, focusing on features consistent with ICD-11 or DSM-5 criteria • a medical history, including prenatal, perinatal, and family history, and past and current health conditions • a physical examination • a consideration of differential diagnoses • a systematic assessment for conditions that may coexist with autism • a profile of the child's strengths, skills, impairments and needs that can be used to create a needs-based management plan, taking into account family and educational context.
28. The guidance says the developmental history and assessment of the child should focus on features consistent with DSM-5 diagnostic criteria. DSM-5 criteria focuses on evidence of:
• deficits in emotional reciprocity • developing, maintaining, and understanding relationships • deficits in non-verbal communication • stereotyped or repetitive motor movements, use of objects, or speech • insistence on sameness, inflexible adherence to routines or ritualised behaviour patterns • highly restricted and fixated interests abnormal in intensity • hyper/hypo reactivity to sensory input or unusual interests in sensory aspects of the environment.
29. To meet a DSM-5 criteria diagnosis, NICE guidance says these symptoms must be present in a child’s early development and must cause clinically significant impairment in social, or other important areas of functioning. It says the disturbances must not be better explained by intellectual disability or global developmental delay.
30. The assessment of the child can be done using assessment tools, such as ADOS. ACP COVID-19 guidance says the ADOS assessment is not interpretable if done remotely or using a mask. Advice from the author of the ADOS tool during COVID-19 says assessors should not do ADOS assessments with a mask. If they do undertake the assessment in a non-standardised way, they should not add up the scores of this, but should describe what they have done and use this as part of making a diagnosis in line with DSM-5 criteria.
31. Aside from this advice, there was no official NICE guidance published during COVID-19 which set out how autism assessments should be done. Our adviser says most services did assessments with adjustments in place and these differed between services. A service would document in the final assessment report whether it did an assessment with a COVID-19 adjustment.
32. NICE guidance says the physical examination should look specifically for signs of injury, such as self-harm or child maltreatment. It should also look for birth defects and dysmorphic features, and skin stigmata of neurofibromatosis or tuberous sclerosis (genetic conditions which causes mainly benign tumours to develop in different parts of the body).
33. NICE guidance says, if there are discrepancies during the assessment between reported signs or symptoms of autism, and the findings of the ADOS, the autism team should consider gathering additional information from other sources or carrying out further autism-specific observations in different settings, such as school, other social setting, or home.
34. NICE guidance says the autism team should use information from all sources, together with their clinical judgment, to diagnose autism based on ICD-11 or DSM-5 criteria. It says they should not rely on any autism-specific diagnostic tool alone to diagnose autism.
35. Our adviser further explained that diagnostic tools, such as ADOS, are helpful but there are no specific tests which identify autism. A diagnosis is a clinical decision made by an MDT after a balanced judgement based on a range of evidence. It is therefore very common for decisions on a diagnosis to differ between clinicians, based on their different clinical opinions. As such, a conclusion that a child does not have autism does not indicate a team did not do an assessment correctly.
36. ‘Masking’ is a strategy some autistic people use, consciously or unconsciously, to appear non-autistic, to meet social expectations and blend into society, such as by mimicking facial expressions or forcing eye contact. There are no formal clinical assessment tools for masking and our adviser explains it is an emerging area in autism research. Our understanding of masking is therefore limited, and it is not known how common it is in autistic people.
37. It is therefore reasonable that during an autism assessment, health care professionals should be aware people may mask, and should therefore listen to an individual’s account of their experience. Our adviser also says assessors should see people in several different situations and obtain information from different sources.
38. In U’s assessment, the Trust included details of his experiences of education, shown in the questionnaire completed by his teachers, the school observations and discussion with the school SENCO. It also included detailed questions about his parent's concerns, shown both in the parental questionnaire and interviews. These included details of U’s experiences of home life, his medical history, family history and developmental history. This is in line with what NICE guidance says should be included in an autism assessment.
39. However, the guidance also says the assessment team should seek a report from the school if one is not already available and gather any additional health or social care information. This suggests the Trust should have gathered U’s EHCP, and information from other professionals such as the paediatrician who diagnosed and cared for the tics.
40. NICE guidance says a developmental history should focus on developmental and behavioural features consistent with DSM-5 criteria. The developmental history taken for U focused on:
• language and communication • emotional reciprocity • social interaction • developing, maintaining, and understanding relationships • play • imagination and creativity • repetitive motor movements and use of objects • insistence on sameness • inflexible adherence to routines or ritualised patterns of behaviour • fixated interests abnormal in intensity • hyper or hypo reactivity to sensory input.
41. This is all consistent with DSM-5 criteria as set out in paragraph 28.
42. U’s Paediatrician also did a full physical examination, and documented no ‘neurocutaneous stigmata’, which includes skin stigmata and neurofibromatosis or tuberous sclerosis, no dysmorphic features, and no other health concerns. The Trust therefore did a physical examination in line with NICE guidance.
43. NICE guidance also says to assess a child’s social and communication skills and behaviours through interacting with and observing them, focusing on features consistent with DSM-5 criteria. The Trust did an assessment of U’s social and communication skills and behaviours using ADOS-2. This involved interacting with and observing U using semi-structured activities including games, books, and play in line with NICE guidance.
44. The ADOS-2 assessment focused on:
• language and communication, including non-verbal communication • reciprocal social interaction including emotional understanding, friendships and social relationships • imagination and creativity • stereotyped behaviours • restricted interests, including sensory interest • ritualistic and compulsive behaviour • complex mannerisms.
45. This is all consistent with DSM-5 criteria as set out in paragraph 28, and as required by NICE guidance.
46. The Trust did U’s ADOS assessment in person, in line with ACP COVID-19 guidance. The Trust made COVID-19 adjustments as the observer wore a face mask, and the assessor maintained social distance from U. The Trust documented the COVID-19 precautions it took in the assessment report, and it did not use the scoring algorithm for this in line with guidance from the author of ADOS at the time.
47. There were some discrepancies of reported signs and symptoms of ASD between the findings of the ADOS, and U’s parents and school. For example, Ms A reported U often makes loud noises, grinds his teeth, uses a chewy tube and has regular tics including clicking his fingers. School reported U clicks his fingers, pulls unusual faces, and plays with and sometimes flaps his hands. However, the ADOS did not observe any sensory interests, unusual restricted and repetitive behaviours or hand, finger and other complex mannerisms.
48. The ADOS also found U has a strong ability to offer and respond to verbal information and used eye contact well to initiate and regulate social interaction. However, school reported U can only offer information when asked directly and will often look away when spoken to. Ms A reported U only initiates interaction with others to show things he is doing, can give eye contact with familiar people, and responds to questions when these are about a topic he enjoys.
49. NICE guidance says, if there are discrepancies between the findings of the ADOS and the child’s reported signs or symptoms, the team should consider gathering additional information from other sources. It also says to consider carrying out further autism-specific observations in different settings, such as the school, home, or other social setting.
50. In line with NICE guidance, after the ADOS, the Trust did a further autism-specific observation of U in a school setting. This was focusing on attention and concentration, language and communication, non-verbal communication, emotional reciprocity and social interaction, play, imagination and creativity, and repetitive and stereotyped interests and behaviours. The Trust also gathered additional information from the school’s SENCO.
51. However, Ms A says during the school observation, the Trust misread U’s interactions and U was aware the assessor was present and was masking. As explained, there is no formal clinical assessment tools for masking, and there is a limited understanding about it and how common it is. We can see the Trust took a reasonable approach as it spoke to U during the ADOS assessment, asking questions about his emotional and social experiences. It also saw him in several different situations and obtained information from different sources.
52. Ms A says the Trust did not observe U’s tics when it observed him in school. Although the Trust did not observe U’s tics itself, it documented evidence of these from his parental and school information in the DSM-5 diagnostic criteria, showing it did not overlook this. Our adviser explained tics are not a symptom of autism to be considered in line with the DSM-5 criteria, but may indicate a different diagnosis.
53. Ms A also says the Trust overlooked U’s sensory difficulties. She says it saw evidence he has sensory needs from its own ADOS assessment but ticked a yellow box on the DSM-5 diagnostic criteria document to dismiss his sensory difficulties. The yellow box on the DSM-5 diagnostic criteria reflects that the Trust saw some evidence of sensory difficulties in U’s ADOS and school observation. The Trust also noted evidence of U’s sensory needs from parental and school evidence, showing it did not overlook his sensory difficulties within the assessment.
54. NICE guidance says the autism team should use information from all sources, together with their clinical judgment, to diagnose autism based on ICD-11 or DSM-5 criteria. The diagnosis is a clinical decision made by an MDT after a balanced judgement based on a range of evidence.
55. The Trust gathered a range of information from different sources and in several different settings. This includes written information from U’s parents, an interview with Ms A, clinical evidence (ADOS-2), a school observation, school evidence and a school staff discussion. The Trust documented on the DSM-5 diagnostic form areas in which there was and was not evidence of ASD in U, from all these different perspectives and different settings.
56. Although the Trust did not see certain reported signs of ASD within its ADOS assessment, it documented evidence of these from parental and school information on the DSM-5 diagnostic criteria form. The evidence does not show the Trust made its diagnostic decision based on a single piece of evidence or placed more weight on the ADOS assessment than any other source of evidence.
57. The Trust did a comprehensive assessment, gathered a range of evidence, and judged all of this against the DSM-5 criteria to make a balanced clinical decision in line with NICE guidance. Although the Trust did not obtain U’s EHCP or information from other professionals such as the paediatrician who diagnosed and cared for the tics, it saw enough evidence across different contexts to come to a balanced decision.
58. The Trust held an MDT meeting in late 2020 to discuss U’s assessment and support to meet his needs. U presented some features commonly associated with ASD, but also features not typically seen in young people with ASD. The Trust concluded there was not enough evidence to meet the full DSM-5 criteria for an ASD diagnosis.
59. This outcome does not indicate the Trust did an incorrect assessment or came to an incorrect decision. The Trust followed the appropriate process and made a clinical decision having balanced the evidence appropriately. Our adviser says the Trust’s decision is within the range of reasonable possible clinical decisions given all the evidence recorded at that time.
60. We consider the Trust did not fail to correctly carry out an ASD assessment for U. We have found the Trust acted in line with NICE guidance when completing the assessment and reaching its decision. We recognise this was a difficult time for U and Ms A, and that they will be disappointed by our decision here.
Failure to carry out a second ASD assessment
61. Ms A complains the Trust refused to carry out a second assessment after she expressed her concerns about the initial one.
62. At the MDT meeting in late December 2020, the Trust decided U would benefit from a further assessment with CAMHS to think about other possible diagnoses and support. After the MDT Ms A telephoned the Trust to complain U’s assessment was not thorough enough and she would like a second opinion.
63. One week later, the Trust telephoned Ms A to find out her concerns about the assessment. The assessment team then discussed these concerns and agreed to wait for a CAMHS assessment, and to discuss U at the next joint meeting with CAMHS in the new year. They also agreed to get the Lead Paediatric Psychologist’s view on U’s assessment.
64. The Trust referred U to CAMHS in mid-December. It wrote on the referral form that U’s parents ‘were not in agreement with the outcome of the ASD assessment as they feel U is on the spectrum, although they recognise he has other needs. They would like a second opinion and further input from your service.’ The Trust also requested on the form a ‘second opinion on whether U’s difficulties could be secondary to ASD, or if other factors could contribute to his complex presentation’.
65. Approximately three months later, the Lead Paediatric Psychologist sent a letter to Ms A, explaining they reviewed the information obtained in U’s assessment and discussed this with the team involved. They agreed with the team that he did not meet the DSM-5 criteria for a diagnosis, and they supported his referral to CAMHS.
66. A few weeks later Ms A emailed the Trust a formal complaint listing her concerns with this review. Ms A complained the Lead Paediatric Psychologist did not meet U, and formed an opinion influenced by the team that did his assessment. She said she thought a second opinion would involve a face-to-face appointment, potentially with a different team at another hospital.
67. The Trust’s response in May 2021 apologised it did not make it clear the second opinion would be a review of U’s previous assessment because of COVID-19 precautions. The Trust explained although Ms A requested a face-to-face appointment, the Lead Paediatric Psychologist felt there was nothing they could add to the assessment. They explained this was because a thorough MDT assessment had been completed, and they agreed the most appropriate pathway for U was a CAMHS review.
68. Ms A responded two days later to say U could not wait for a CAMHS assessment and that she had been trying to have him assessed since he was four. The Trust’s responded four weeks later and said the team were confident and in agreement that, despite taking place during COVID-19 restrictions, the review of U’s assessment was not compromised by not seeing him face-to-face. The Trust agreed the appropriate next step was to wait for a CAMHS assessment.
69. The Trust says four members of its wider autism assessment team did U’s assessment, but the entire team regularly meets to discuss complex children to ensure full MDT oversight. The Trust says it did this for U, and the whole team discussed the evidence obtained for him against the DSM-5 criteria. The Trust therefore says it would not have been appropriate for any of its other clinicians to do a second face to face assessment of U due to unavoidable bias. The Trust says, because of this, it does not provide second opinions within its own team if parents disagree with the outcome of a child’s assessment.
70. However, the Trust said the team considered it was in U’s best interest to have a second assessment by a separate, independent service, which had not yet met him. It says, in its area, the appropriate service to undertake this was a local CAMHS.
71. The Trust says the Lead Paediatric Psychologist’s review of U’s assessment was separate to this and was not intended to be a second opinion. The Trust says this was to provide a further opinion from a senior clinician, who was highly experienced in ASD assessments, on whether the clinical evidence the team gathered indicated U met DSM-5 criteria. The Trust says it considered the Lead Paediatric Psychologist was the most appropriate senior clinician to undertake this review, as they were not involved in any part of U’s assessment.
72. NICE guidance says in carrying out autism assessments, a team should consider a range of other possible differential diagnoses. Differential diagnoses include neurodevelopmental disorders such as a learning disability, mental and behavioural disorders such as ADHD or an anxiety disorder, conditions of developmental regression, and other conditions. It says if the team suspects these, it should consider whether other specific assessments are needed to help interpret the autism history and observations.
73. NICE guidance also says the autism team should be aware that some children and young people have features of behaviour which are seen in the autism spectrum, but do not meet the ICD-11 or DSM-5 diagnostic criteria for a diagnosis. It says the autism team should then consider referring these children to appropriate services.
74. NICE guidance says if after the assessment, there is disagreement with parents or carers about the diagnosis, the autism team should consider obtaining a second opinion, including a referral to a specialised tertiary autism team if necessary.
75. There is no guidance outlining what a second opinion is, or what it involves. However, our adviser says generally, a second opinion involves a second assessment of by a different clinician and a new clinical opinion on whether they should be diagnosed with autism. A second opinion should also collect new information.
76. Our adviser says a second opinion usually looks like a second assessment by a different clinician within the same Trust. If there is continued disagreement or uncertainty, a referral to a specialist national autism tertiary service can be made. Our adviser says a Trust should at least consider a referral.
77. CAMHS is commissioned to provide mental health care. CAMHS advised us it only provides ASD assessments to children already under its care for mental health conditions. It explained it is appropriate to refer a child to CAMHS following an ASD assessment if they are found to have mental health difficulties which meet its criteria, but CAMHS would not then provide a reassessment for autism.
78. CAMHS would accept the child for the purposes of providing mental health care, and if within this care it recognised strong ASD traits in a child, it would look at the ASD assessment done and see if that is reflected. If not, it says it would usually go back to a Trust and ask it to review its assessment. It does not give an automatic review or second opinion on ASD assessments for children referred to it.
79. In line with NICE guidance, the Trust considered differential diagnoses for U of anxiety, behavioural difficulties and emotional difficulties. The Trust referred U to CAMHS, an appropriate mental health service for other assessments to think about other possible diagnoses and support for him, in line with NICE guidance.
80. Our adviser adds, as U appeared to present with a complex range of difficulties, it was appropriate to refer him for further assessment of his mental health difficulties. CAMHS was an appropriate service to refer to, as it would be expected to have a range of professionals with experience in complex presentations, particularly where more than one diagnosable disorder is being considered.
81. Given the disagreement between the Trust and Ms A regarding U’s autism assessment, the Trust should have arranged a second opinion in line with NICE guidance.
82. The Trust told us the clinical pathway at the time of the events was for primary-school aged children to be referred to CAMHS for an autism assessment. The Trust said it completed this referral and requested a second opinion from CAMHS and CAMHS accepted its referral for assessment. This is in line with NICE guidance which says the autism team should consider obtaining a second opinion if necessary.
83. CAMHS told us it does not provide second opinions on ASD assessments. The Trust told us CAMHS did not inform the Trust that it did not provide second opinions. We understand the Trust referred U for a second opinion and the referral was accepted. We can see the referring clinician requested a second opinion due to Ms A not being in agreement regarding U’s diagnosis.
84. CAMHS informed us it had accepted U’s referral but due to waiting times his initial appointment was not until fourteen months from the time of the referral. At this time U had received a private diagnosis and CAMHS said it did not decline providing a second opinion but that it was no longer required.
85. Our adviser said as the Trust was under the belief that CAMHS would provide the second opinion as part of its assessment, then it would not be expected to make another or a different referral. This is because as far as the Trust was aware it had fulfilled its duties of requesting a second opinion in line with NICE guidance.
86. We have found the Trust did not refuse to carry out a second assessment or obtain a second opinion. We can see a senior clinician reviewed U’s initial assessment and the Trust also referred U to CAMHS for a second opinion and was informed by CAMHS the referral had been accepted. We can see CAMHS had a long waiting list and by the time of U’s appointment, in early 2022, he had received a private diagnosis, and the second opinion was no longer required.
87. We understand our decision is going to be very distressing to Ms A especially considering the impact she has told us this has had to her, U and her family. We are by no means minimising the experience Ms A and U have had and we recognise this has been an extremely difficult and traumatic time for them both.