Diagnosis 10. Mr M told us that the Trust diagnosed his daughter incorrectly with autism. He has concerns that the methods and sources used during the autism assessment process were not evidenced based and did not reflect his daughter’s personality. He told us the calculations in the ADOS 2 document used in the assessment were miscalculated and the summary provided was not specific to his daughter. Mr M was also concerned the assessment process was not detailed, and decisions were made quickly.
11. The medical records show Miss M, who was ten at the time, was referred to the Trust by her GP on 9 May 2022 for an autism assessment. This referral was triaged and accepted by the Trust on 23 May. Miss M’s mother then provided a developmental history on 9 March 2023 and an autism assessment was carried out by the Trust on 24 April. The results of the assessment alongside information from Miss M’s school were then reviewed in a multidisciplinary meeting on 5 July where it was agreed Miss M met the criteria for autism spectrum disorder (ASD).
12. NICE guidance on autism spectrum disorder says a practitioner should consider referring children and young people to the autism team if there are concerns of possible autism on the basis of reported or observed features. It says an autism assessment should be started within three months of the referral to the autism team.
13. Our adviser explained the referral letter from Miss M’s GP to the Trust was based on potential symptoms of autism Miss M was reported to be displaying. This was based on information provided by Miss M’s mother who she lived with and included sensory difficulties, friendship issues, speech delay, and restricted range of foods. They go on to explain that based on the information in the referral and in line with the NICE guidance, the referral was accepted for an assessment as symptoms were being reported.
14. We have seen it took ten months from the referral to when the assessment process started. This is longer than the recommended three months, but our adviser has explained it is variable between different localities and can be on average longer than the recommended time. Mr M was concerned his daughter’s autism referral had been fast tracked. We hope this will go in some way to alleviate Mr M’s concerns as it does not appear this was the case.
15. We have seen evidence, the autism assessment process for Miss M included multiple methods and sources, gathering initial information from Miss M’s mother and her school using structured forms which reflected the DSM-5 criteria for ASD. It also gathered additional information from Miss M’s mother through a clinical interview by phone. This was also structured to reflect the DSM-5 criteria for ASD. It also directly assessed Miss M using the ADOS-2 which is a standardised tool that helps providers diagnose ASD in children and adults. This assessment appears to be in line with the above NICE guidance.
16. We understand that Mr M had specific concerns about the calculations used in the ADOS-2 tool. We therefore asked our adviser about this. They explained that Miss M’s score in the restricted and repetitive behaviour category does appear to have been miscalculated by one point and she should have been scored as one.
17. They did however go on to explain that the autism cut off score is nine, and even with the correct score on one in this category Miss M would still have scored ten overall., so she would still have been above the cut off score. They gave assurances that the difference in these scores would not have made a difference to the outcome of the assessment.
18. Based on the evidence we have seen the Trust appears to have acted in line with NICE guidance when completing the ASD assessment for Miss M. It also reflected on information from multiple methods and sources including clinical judgement from a multi-disciplinary team and her school. The assessment does appear to have been evidence based and reflected what the Trust was told by different sources including its own observations of his daughter.
19. It appears his concerns about the ADOS 2 document calculations were right, but this did not impact the fact she would have scored above the threshold for autism. It is clear from what we have seen that the assessment and decision was based on the evidence relating to his daughter specifically. We saw no evidence the assessment process was not detailed, or that decisions were made quickly, as they were made in line with NICE guidelines based on evidence from several different sources and considered by a milt-disciplinary team.
20. We understand Mr M’s frustration that as a parent he was not involved in the assessment process itself. We would like to reassure him that the Trust did not do anything wrong in its assessment of Miss M and followed the NICE guidelines taking evidence from different sources. We will therefore not take further action on this complaint.
21. It is understandable from what Mr M has told us that he felt let down that he was not involved with his daughter’s ASD assessment from the beginning. We understand how frustrating this must have been for him and it is clear this has been a very difficult for them and we are sorry for his experience.
22. We hope that our explanations and our adviser’s expertise have given him reassurance that the Trust followed the relevant guidelines and did not do anything wrong in relation to his daughter’s ASD assessment and we will decline to investigate this issue further on that basis.