The Experience of Getting a Neurodevelopmental Disorder Diagnosis: A Survey of Stakeholders

Background: Neurodevelopmental disorders (NDD) affect the brain and nervous system during early development. These disorders include attention deficit hyperactivity disorder, autism, fetal alcohol spectrum disorders and intellectual disability. The transdiagnostic approach suggests NDDs should be considered together, not in isolation. A transdiagnostic approach can make significant difference in understanding these disorders due to frequent overlap of signs, symptoms and diagnostic labels. Although the assessment and diagnostic experience has been studied individually for some NDDs, it is unclear if the assessment and diagnostic experiences of stakeholders (individuals diagnosed with a NDD, along with caregivers / family members and health professionals involved in their care) are similar or different across NDDs.

Objectives: This research project aimed to explore the NDD assessment and diagnostic experiences, from the stakeholder perspectives of individuals diagnosed with a NDD, their caregivers / family members and their health professionals.

Methods: An online survey designed specifically for this research project captured the assessment and diagnostic experiences of stakeholders across Australia. The survey included a general demographic section and tailored background questions for each of the three stakeholders groups: (1) individuals diagnosed with a NDD (n = 5); (2) caregivers / family members of an individual diagnosed with a NDD (n = 68); and (3) professionals involved in the assessment, diagnosis or care of individuals diagnosed with a NDD (n = 50). The survey concluded with an open-ended question seeking the stakeholders' view on how the process of assessing and diagnosing NDDs can be improved. A qualitative thematic data analysis approach, with the assistance of NVivo software, was used to identify themes from the qualitative survey responses from 113 stakeholders.

Results: The four main themes that emerged from the qualitative survey responses were process, support, health professionals and resources. Processes and clear pathways are needed where health professionals work collaboratively with one another, individuals undergoing assessment and caregivers / family members. Support during the assessment and diagnosis process was an expressed need to help individuals undergoing assessment and their caregivers / family members to navigate this very stressful time, in particular in relation to appraisal, emotional, informational and instrumental support. Health professionals with a lack of knowledge about some NDDs, or who miss early signs and symptoms, misdiagnose and do not identify comorbidities, were raised as concerns, all of which would be improved through the provision of more specialized training for health professionals in relation to the full range of NDDs. Finally, additional resources were deemed necessary to provide adequate trained health professionals to meet service requirements, integrate appropriate assessment tools into practice and provide financial support to allow individuals and caregivers / families to access assessment and diagnostic services within acceptable wait times.

Conclusions: The perspective of individuals, caregivers / families and health professionals, showed that across all NDDs the assessment and diagnosis process is often associated with a wide range of positive and negative emotions. Health professionals have the opportunity to implement solutions that may improve the diagnostic experience through addressing processes, supports, health professional training and resources.