A survey of autistic adults, relatives and clinical teams in the United Kingdom: And Delphi process consensus statements on optimal autism diagnostic assessment for adults

Abstract

Accessing adult autism diagnostic pathways can be difficult. This study explored perspectives of UK autistic adults, relatives and clinicians regarding the characteristics of optimal adult autism assessment and diagnostic services. In stage 1, three key stakeholder groups were surveyed about experiences of adult autism diagnostic services (pre-assessment/assessment): 343 autistic adults, 45 relatives and 35 clinicians completed parallel surveys. Information from stage 1 surveys was used to devise statements for a modified Delphi process in stage 2 seeking consensus among clinicians on optimal diagnostic service characteristics. Data analyses were non-parametric and descriptive. Over half of adults were in contact with mental health services prior to autism diagnosis. Clinicians reported that multidisciplinary diagnostic teams lacked key professionals. Thirteen statements describing optimal autism diagnostic service provision were developed. There was consensus from clinicians on 11 statements relating to clear assessment pathways, updates for people while waiting, pre-assessment information gathering/provision, co-occurring condition identification and training/networking. Some autistic adults, relatives and clinicians were positive about services, all stakeholders identified improvements were needed. The findings describing optimal service provision are relevant for UK clinicians, managers and commissioners to improve diagnostic assessments for autistic adults, and have international relevance for similar health systems. Lay abstract Living with undiagnosed autism can be distressing and may affect mental health. A diagnosis of autism can help self-awareness and self-understanding. However, it can be difficult for adults to access an autism assessment. Clinicians also sometimes find it hard to identify autism in adults. This may mean an autism diagnosis is delayed or missed. In this study, we asked autistic adults, relatives and clinicians how to improve this. The study was in two stages. In the first stage (stage 1), 343 autistic adults and 45 relatives completed a survey. In the survey, we asked questions about people’s experiences of UK autism assessment services for adults. Thirty-five clinicians completed a similar survey. Clinicians reported that some autism assessment teams lacked key professionals, for example, psychologists and occupational therapists. We used the information from the three separate surveys to create 13 statements describing best autism assessment services for adults. In stage 2, we asked clinicians for their views on the 13 statements. Clinicians agreed with 11 of the statements. Some autistic adults, relatives and clinicians were positive about autism assessment services, and many also described areas that could be improved. The study findings can be used to improve UK adult autism assessment services and may be helpful for service developments worldwide.

Consensus statements on optimal adult post-autism diagnosis support and services: Delphi process following a UK survey of autistic adults, relatives and clinicians

“…Fourteen clinicians were psychiatrists (40.0%), 16 clinical psychologists (45.7%) and five (14.2%) were nurses, speech and language therapists or senior autism practitioners. Further details on the characteristics of participants can be found in the related article (Wigham et al, 2022).…”

“…A crucial component to expanding post-autism diagnostic support/services is training others, for example, in primary and secondary mental/physical healthcare, adult social care, IAPT and learning disability services. However, while recommended in national guidance (NICE, 2012; SIGN, 2016; Table S1), research has identified that UK specialist autism services lack resources for cascading expertise via training/consultancy (Beresford et al, 2020; Wigham et al, 2022) again highlighting barriers to implementation of NICE CG and QS.…”

“…Stage 1 Methods and Results are presented, followed by Stage 2 Methods and Results. An abbreviated methods section is presented; more details can be found in a linked paper about diagnostic assessment (Wigham et al, 2022).…”

A case study on the effect of light and colors in the built environment on autistic children’s behavior

“…The questionnaire survey for the quantitative analysis consisted of forty questions that comprehensively covered the primary design aspects that need to be considered, in terms of light and color perceptions, before designing interior spaces intended for autistic children. The questionnaire was carefully designed in a lucid and straightforward format from the literature (67)(68)(69)(70)(71)(72)(73). The questionnaire was fine-tuned further in consultation with the therapists.…”

Perspective Chapter: Rethinking Autism Assessment, Diagnosis, and Intervention within a Neurodevelopmental Pathway Framework

“…Care pathways are applied internationally as a way of planning and delivering individualised support to specified groups of people through multidisciplinary team working [30]. Within the last decade, evidence has become available to inform standards and practice in pathways for assessment and diagnosis of autism in children and adults [8,9,31].…”