Programme theories and sources
| PTs 1–4: Stage specific programme theories affecting the diagnostic assessment pathway | |
| PT1 Listening and recognition | |
| If frontline health and education professionals (eg, GPs, teachers) are confident in recognising the signs and symptoms of autism, are cognisant of referral pathways and listen to parents, taking their concerns seriously then CYP will be referred to an appropriate service, in a timely manner, reducing parental frustration. | NICE, 201112; Reed and Osborne, 201278; Abbott et al, 201331; The Scottish Government, 201436; Crane et al, 20166; Rogers et al, 201650; O'Reilly et al, 201732; RCPCH, 201720; Potter, 201733; Unigwe et al, 201737; Crane et al, 201858; Dowden, 201834; Rutherford et al, 201841; Ford et al, 201979; Hurt et al, 2019.35 |
| PT2 Referral and triaging | |
| If autism diagnostic services provide clear guidelines for referrers on what information is needed and how to refer, and referrers follow these guidelines, then time will be saved at the triaging stage and proportionately fewer CYP who do not have autism will go through the full process. | NICE, 201112; Carpenter, 201245; The Scottish Government, 201436; McKenzie et al, 201539; Healthcare Improvement Scotland, 201657; Rutherford et al, 201638; Rutherford et al, 201841; Autistica, 201942; Hurt et al, 201935; Tollerfield and Pearce, 2020.40 |
| PT3 Diagnostic assessment | |
| If a structured, consistent and multidisciplinary approach to service delivery is adopted, making best use of available staff and clinical expertise, then the number of assessments per individual may be reduced. If a balance of interview, observation and recognised tools are used, alongside an assets-based approach, this will ensure a comprehensive and family-friendly diagnostic experience. If the same Trust manages both community paediatrics and mental health services, this potentially allows for a seamless transition, avoids duplicate waits and enables families to see all relevant professionals at the same time. | Carpenter, 201245; NICE, 2014a60; Karim et al, 201447; Gray et al, 201548; Crane et al, 20166; Halpin, 201649; Healthcare Improvement Scotland, 201657; McKenzie et al, 201680; Rogers et al, 201650; Rutherford et al, 201638; Tryfona et al, 201652; Galliver et al, 201713; Jordan et al, 201753; Juárez et al, 201851; Rutherford et al, 201841; Ahlers et al, 201981; Autistica, 201942; Ford et al, 201979; Tollerfield and Pearce, 2020.40 |
| PT4 Diagnostic feedback | |
| If parents understand the diagnostic process and feel supported this can moderate parental expectations. Feedback should take an assets-based approach and management plans should be individualised, taking account of co-existing conditions. Reports should be timely and in a format that everyone finds helpful. | NICE, 201112; RASDN, 201182; Calzada et al, 201262; Carpenter, 201245; Reed and Osborne, 201278; Abbott et al, 201331; Karim et al, 201447; NICE, 2014a60; The Scottish Government, 201436; Halpin, 201649; Healthcare Improvement Scotland, 201657; Hennel et al, 201656; McKenzie et al, 201680; Reed et al, 201683; Rogers et al, 201650; Crane et al, 201858; The Scottish Government, 201864; Autistica, 201942; Hurt et al, 201935; Tollerfield and Pearce, 2020.40 |
| PTs 5–7: Cross-cutting programme theories affecting the diagnostic pathway | |
| PT5: Working in partnership with families | |
| If parents have a single point of contact, are provided explanations throughout and included in decision-making then the diagnostic pathway may be less stressful. | Calzada et al, 201262; Abbott et al, 201331; Gregory et al, 2013b59; NICE, 2014a60; Rogers et al, 201650; Healthcare Improvement Scotland, 201657; Crane et al, 2018.58 |
| PT6: Interagency working | |
| If ‘experts’ including people with autism, carers, professionals and specialist organisations work in partnership and the knowledge generated is effectively embedded into local services, this will build capacity, improve parent/CYP satisfaction and support planning of services both locally and nationally. | NICE, 201112; Calzada et al, 201262; Gregory et al, 2013a61; Gregory et al, 2013b59; Karim et al, 201447; NICE, 2014a60; The Scottish Government, 201436; Gray et al, 201548; Healthcare Improvement Scotland, 201657; Rogers et al, 201650; Galliver et al, 201713; Hayes et al, 201884; The Scottish Government, 201864; Williams et al, 201871; Hurt et al, 201935; Tollerfield and Pearce, 2020.40 |
| PT7: Training, service development and evaluation | |
| If professionals have access to tailored training based on their needs, competencies and role, and services engage in service development and evaluation, this will increase the local skill set of people who regularly work with CYP who may have autism. | NICE, 201112; Gregory et al, 2013a61; Autism ACHIEVE Alliance, 201463; NHS Education for Scotland, 201485; The Scottish Government, 201436; Rutherford et al, 201638; RCPCH, 201720; Rutherford et al, 201841; The Scottish Government, 2018.64 |
CYP, children and young people; GPs, general practitioners.