An investigation of adherence to best practice guidelines for autism diagnosis in New Zealand

Taylor, Lauren; Eggleston, Matthew; Thabrew, Hiran; Meer, Larah van der; Waddington, Hannah; Whitehouse, Andrew J. O.; Evans, Kiah

doi:10.1177/13623613211015757

Cited by 7 publications

(7 citation statements)

References 37 publications

(74 reference statements)

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“…There are several commentaries highlighting suggestions and considerations [see ( 19 , 25 )], but more empirical research is likely needed to inform development of these. Interestingly, prior research suggests that professionals may not always follow clinical guidelines for autism assessments [e.g., ( 7 , 9 , 10 , 38 )]; potentially because of a combination of service-related, professional-related and patient-related factors. It may be prudent for future research to clarify the ways in which professionals find clinical guidelines useful and reasons for deviating from these.…”

Section: Discussionmentioning

confidence: 99%

“…In an extensive review of 21 clinical guidelines used to inform the autism diagnostic process for children, adolescents, and adults in the UK, Hayes et al ( 7 ) described substantial variation in suggestions about what an autism assessment should involve (e.g., sources of information, focal topics in a clinical interview), what methods should be used (e.g., inclusion of formal measures), whether multidisciplinary team (MDT) representation was necessary and how professionals should ideally work together using complementary skills, how to deal with diagnostic uncertainty (e.g., for patients scoring around the threshold on a standardized diagnostic measure) and how to resolve differences of opinion about diagnosis (e.g., between MDT professionals). Studies focusing on clinical guidelines for autism assessment in other parts of the world, such as New Zealand ( 9 ), the US and Canada ( 10 ), have reported similar differences in guidance for professionals. The implication is that there has been variation in autism assessment service provision.…”

Section: Introductionmentioning

confidence: 98%

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Autism Diagnostic Assessments With Children, Adolescents, and Adults Prior to and During the COVID-19 Pandemic: A Cross-Sectional Survey of Professionals

et al. 2022

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BackgroundAccess to timely high quality autism diagnostic assessments has traditionally been patchy; many individuals wait months, if not years, for an appointment. The onset of the COVID-19 pandemic has likely impacted autism diagnostic services. This study investigated professionals' experiences of, and thoughts about: (1) how autism diagnostic assessments were conducted before the pandemic; (2) adaptations to service provision because of the pandemic; and (3) challenges, risks, advantages and opportunities associated with autism assessments conducted via online platforms (telehealth).MethodFifty-two professionals, based in different autism diagnostic services and working with children, adolescents and/or adults, completed an online cross-sectional survey in August and September 2020. This comprised demographic questions (about professionals' roles and experiences), and closed and open questions about service provision and telehealth autism assessments.ResultsThere was substantial variation in how autism assessments were conducted prior to and during the pandemic; for example, in relation to the number of professionals involved in the assessment and types of structured, semi-structured and unstructured measures used to conduct this. Fifty-two percent of participants (n = 27) reported some service disruption (e.g., full closure, substantial reduction in provision, and/or pausing of in person appointments). Waiting times for assessment had become longer for 58% of services (n = 30), due to pandemic-related disruption. Six themes emerged from thematic analysis of open responses: (1) the autism diagnostic pathway, pre-pandemic; (2) initial impact of the pandemic on service delivery; (3) conducting autism assessments during the pandemic; (4) working remotely; (5) improving service design and delivery; and (6) post-diagnostic support. Views about the accessibility, validity, and reliability of conducting telehealth autism assessments were polarized. Some participants considered this efficient, flexible, and adequate; others viewed this as unethical and inappropriate. What constitutes good practice in telehealth autism assessments remains unclear, but there is a general openness to using this method (potentially in a hybrid telehealth—in person model), provided rigor and standardization are enhanced.ConclusionsThe pandemic has potentially compounded existing bottlenecks to the autism diagnostic pathway. Future research should seek to improve timeliness, standardization, accessibility and robustness of this pathway, and the validity and reliability of telehealth autism assessments.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 98%

Autism Diagnostic Assessments With Children, Adolescents, and Adults Prior to and During the COVID-19 Pandemic: A Cross-Sectional Survey of Professionals

et al. 2022

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“…There are several commentaries highlighting suggestions and considerations [see (19,25)], but more empirical research is likely needed to inform development of these. Interestingly, prior research suggests that professionals may not always follow clinical guidelines for autism assessments [e.g., (7,9,10,38)]; potentially because of a combination of service-related, professionalrelated and patient-related factors. It may be prudent for future research to clarify the ways in which professionals find clinical guidelines useful and reasons for deviating from these.…”

Section: Clinical Innovationmentioning

confidence: 99%

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“…Two particular neurodevelopmental conditions, autism and attention-deficit/hyperactivity disorder (ADHD), demonstrate these challenges. Autism is often described as difficult to diagnose, even in the absence of ADHD and other symptoms, due to behavioural and biological heterogeneity and changes over a developmental period (Taylor et al, 2021). The same is true of ADHD diagnosis (Halperin & Marks, 2019).…”

Section: Brief Pointsmentioning

confidence: 99%

“…Diagnosis of co-occurring neurodevelopmental conditions is complex and may be challenging for clinicians. Research into professionals' perspective on autism diagnosis often begins from the a priori assumption that the individuals being assessed are autistic or suspected to be autistic (Taylor et al, 2021). However, this study sought to examine the difficulty for clinicians when presented with a complex case with multiple neurodevelopmental symptoms, including ADHD and autism symptoms.…”

Section: Brief Pointsmentioning

confidence: 99%

Diagnosis of Co-occurring Autism and Attention Deficit Hyperactivity Disorder

Sainsbury¹

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Autism and attention deficit hyperactivity disorder (ADHD) both have onset in early childhood and have multifaceted lifelong effects. The two conditions are separated by different core behavioural symptoms and clinical management. However, autism and ADHD have significant co-occurrence rates. Both autism and ADHD are associated with social differences, high sensory needs, attention difficulties and increased co-occurrence with other conditions. This has resulted in debate about whether autism and ADHD should be viewed as one condition on a gradient or as two separate conditions. Regardless of such the taxonomic classification issues, it appears that, in those children most affected by autism + ADHD characteristics, there are additive challenges across the behavioural and cognitive domains associated with both conditions. Autistic and ADHD children both benefit from early support, which can reduce some of the negative outcomes associated with these conditions. However, the opportunities to access early support during a sensitive developmental period are reduced by the delayed diagnosis of autism that happens when ADHD co-occurs. A literature review conducted as part of this thesis established that this delay is observed across international jurisdictions. The literature review also demonstrated that there is evidence for an earlier ADHD diagnosis when autism is present. There was also some limited evidence for later age of parental first concern and longer wait time to diagnosis for the autism + ADHD group. Other characteristics which further exacerbated the delay were being female and an ADHD diagnosis being given before the autism diagnosis. The literature review indicated an international pattern in delayed diagnosis of autism for autistic + ADHD children and that there did not appear to be any studies examining the diagnostic pathway for these children in New Zealand. Therefore, understanding whether this delay is relevant for autistic + ADHD children in New Zealand is an important area of study. As is a further understanding of the mechanism by which autism + ADHD children might present differently to children with a singular diagnosis of either autism or ADHD. Variables indicated by the literature review, such as wait time to diagnosis and age of parental first concern, were also explored as possibly contributing to delay in autism diagnosis when ADHD was present. In the first study of this thesis, 288 New Zealand parents of children diagnosed with autism (n = 111), ADHD (n = 93), or both conditions (n = 84) participated in an online survey. The results indicated that co-occurring autism and ADHD was associated with an earlier ADHD diagnosis and a later autism diagnosis in New Zealand, thus fitting the international trend. Parents of children with both diagnoses reported less atypical development in language and social behaviours compared to parents of autistic children. The co-occurring group also experienced longer times to diagnosis, and saw more types of specialists prior to a diagnosis than those with autism. The experience of parents might also enhance an understanding of delays and challenges in the diagnostic process. Therefore, the second study of this thesis used qualitative reflexive-thematic analysis to understand the experiences of parents on their journey to diagnosis for their children. The findings suggest that parents view the process to diagnosis as an adversarial one, which required extensive knowledge, finances, and network resources. Parents also described a second ‘battle’, which was often unexpected, to get support for their child post-diagnosis. Parents identified that the relief of the removal of parenting guilt and blame, as well as situating the issue outside of the child, was an important part of the diagnosis label. The literature review and both studies one and two indicated that the diagnostic process for autism + ADHD is complex. In the final study, these complexities were further explored by an anonymous online survey of clinicians' (psychologists, paediatricians, psychiatrists) responses (n = 29) to two complex neurodevelopmental cases described in vignettes. These vignette cases included autism + ADHD characteristics and a number of other co-occurring characteristics. Clinicians reported multiple possible lines of inquiry including specific assessments for particular hypothesised diagnoses and more general assessments. The results of this study suggested that complex cases require lengthy consideration and multiple resources. The thesis identified and elucidated the phenomena in the timing of diagnosis when autism and ADHD co-occur. This included understanding the delay in autism diagnosis when ADHD is present and provided possible evidence for where along a diagnostic pathway such a delay might be occurring. A biopsychosocial framework was also used to consider multiple psychological and social aspects of this process including the experiences of complex neurodevelopmental cases for families and clinicians. The experience for families and clinicians grappling with an imperfect diagnostic model suggests that multiple resources, time delays and stressful situations are common. This thesis concludes with theoretical and practical recommendations for an improved diagnostic pathway and experience for clinicians and families.

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An investigation of adherence to best practice guidelines for autism diagnosis in New Zealand

Cited by 7 publications

References 37 publications

Autism Diagnostic Assessments With Children, Adolescents, and Adults Prior to and During the COVID-19 Pandemic: A Cross-Sectional Survey of Professionals

Autism Diagnostic Assessments With Children, Adolescents, and Adults Prior to and During the COVID-19 Pandemic: A Cross-Sectional Survey of Professionals

Data_Sheet_1.pdf

Diagnosis of Co-occurring Autism and Attention Deficit Hyperactivity Disorder

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