Comparing the Perspectives of Service Users and Clinicians on the Characteristics of Current and Optimal Autism Diagnostic Assessment Services for Adults
Objectives: this study aims to (1) examine the characteristics of current services as described by multidisciplinary team clinicians and autistic adults and relatives accessing UK diagnostic assessment services within the last 5 years (2) compare these perspectives with service specifications described in NICE guidance, and clinicians’ consensus view on the characteristics of optimal services, and (3) reach a consensus about optimal services that can be commissioned.
Methods: 346 adults receiving an autism spectrum diagnosis completed a national survey about their experiences of the diagnostic process, and possible adjustments; 46 relatives completed a parallel survey. 36 UK diagnostic teams were surveyed to capture the characteristics of current services, and suggestions about modifications. A modified Delphi survey process was then used to seek consensus on the characteristics of optimal diagnostic services. Data analysis comprised content analysis, plus descriptive statistics, tests of correlation, difference and agreement.
Results: the median age of autistic adults was 44 years (and 41 years at diagnosis, range 18-89); 54% of respondents were female. Two thirds reported a mental health condition (55% anxiety; 54% depression). 79% of adults said their assessment was appropriate to their gender and age; and 74% of adults reported that consideration was given to their sensory needs. Not all clinical services had resources to make adjustments; 92% of diagnostic teams said their assessment process was the same for men and women. Clinical consensus agreement was reached on 11 statements describing optimal autism diagnostic services including the following: that services should provide individuals on the waiting list with periodic updates about the waiting time for assessment (a third of diagnostic teams reported waiting time from referral to first diagnostic assessment was within the recommended 12 weeks); that information about what to expect during the diagnostic assessment should be provided to individuals before their assessment (currently 36% of adults reported receiving this); that services should always try to gather information from someone who knows/knew the person well; should include a clinician with expertise identifying mental health conditions; and should include someone ‘trained in the use of a standardised observational tool so it can be used if needed’. Multidisciplinary assessments were not always possible nor was access to third party reported developmental history. A large role of diagnostic teams was delivering training to clinical and other agencies; providing training on a commissioned rather than ad hoc basis was identified as a characteristic of optimal services.
Conclusions: information from autistic adults and clinical services about the characteristics of current services, and consensus views on optimal services identified are important for informing service providers, policy makers, and commissioners of services. We anticipate the findings will lead to improvements in autism diagnostic services, ensuring they meet the needs of service users and clinical teams.