Perspectives of Autistic Adults, Relatives and Clinicians on the Characteristics of Current and Optimal Post-Diagnostic Support Services

Background: there are few post-diagnostic support services available for autistic adults. Service developments are required to address this significant unmet need.

Objectives: (1) to explore the characteristics of current UK post-diagnostic support services from the perspectives of autistic adults diagnosed in the last 5 years, relatives and clinicians and (2) compare these characteristics with views about optimal services and the recommendations made in the UK NICE guidelines (2012) and (3) identify specific areas that require development to create optimal post-diagnostic support services.

Methods: 346 adults with a clinical diagnosis of an autism spectrum disorder completed a national survey about their experiences of the post-diagnostic process, and possible adjustments; 46 relatives completed a parallel survey. 36 UK diagnostic teams were surveyed to capture the characteristics of current post-diagnostic services, and suggestions about modifications. A modified Delphi survey process was used to seek consensus on the characteristics of optimal post-diagnostic services. Data analysis comprised content analysis, 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). Almost all adults and relatives reported that feedback after the diagnostic assessment was received. Only 56% reported opportunities to discuss what support might be beneficial, and 51% had the opportunity to discuss their strengths or the impact of the diagnosis on relationships or work. Clinical consensus was reached on 11 statements describing characteristics of optimal post-diagnostic support services. All clinical teams agreed that offering an extra ‘follow-up meeting at 2-4 months after the feedback meeting to discuss implications of diagnosis, coping strategies and future planning’ should be a characteristic of optimal post-diagnostic support services. 50% of clinical teams did not have the resources to treat co-morbid mental health conditions identified during the diagnostic assessment (this aligned with the experiences of the autistic adults surveyed); and 47% of clinical teams reported they were unable to provide any further support or preventative interventions for those not in crisis. Diagnostic teams agreed that ‘a diagnosis of autism should not limit access to community and/or inpatient mental health services.’ Teams also agreed that optimal post-diagnostic services ‘should include occupational therapists and speech and language therapists’ and opportunity to access ‘step-on/step-off’ support to protect mental health, and maintain well-being. Consensus was that optimal post-diagnostic services should include people in the core team with expertise in autism, from multiple agencies/specialities, and that training other parties on the treatment of co-existing conditions should be commissioned and resourced (in partnership with other agencies) as opposed to being ad hoc.

Conclusions: service users and clinicians all identified gaps in current post-diagnostic support. Clinical teams achieved full consensus on the characteristics for optimal autism post-diagnostic support service developments. These findings can inform the necessary developments. Optimal services need commissioning, and some reorganisation of resources is required. Service structures and policy specifications should be developed to best support the well-being of autistic adults, relatives and clinicians.