Get It Right, Make It Easy, See It All: Autism Spectrum Disorder Diagnosis in Australia from the Perspective of Autistic Individuals and Their Caregivers

Poster Presentation
Thursday, May 10, 2018: 5:30 PM-7:00 PM
Hall Grote Zaal (de Doelen ICC Rotterdam)
E. D'Arcy1,2,3, M. Falkmer3,4,5, A. J. Whitehouse3,6,7, S. J. Girdler8,9, T. Falkmer3,10,11,12, J. Wray13, V. Eapen9,14, M. R. Prior15 and K. Evans3,6, (1)Autism Research Team, Telethon Kids Institute, Subiaco, Australia, (2)School of Occupational Therapy and Social Work, Curtin University, Bentley, Australia, (3)Cooperative Research Centre for Living with Autism (Autism CRC), Brisbane, Australia, (4)School of Occupational Therapy and Social Work, Curtin University, Perth, Western Australia, Australia, (5)School of Education and Communication, CHILD programme, Institute of Disability Research, Jönköping University, Jönköping, Jönköping County, Sweden, (6)Telethon Kids Institute, University of Western Australia, Perth, Western Australia, Australia, (7)University of Western Australia, Perth, Australia, (8)School of Occupational Therapy, Social Work and Speech Pathology, Curtin University, Perth, Western Australia, Australia, (9)Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket, Brisbane, Australia, (10)School of Occupational Therapy, Social Work and Speech Pathology, Curtin University, Perth, Australia, (11)Pain and Rehabilitation Centre, and Department of Medical and Health Sciences, Linköping University, Linköping, Sweden, (12)Department for Rehabilitation, Jönköping University, Jönköping, Sweden, (13)State Child Development Service, Western Australia Department of Health, Perth, Western Australia, Australia, (14)School of Psychiatry, University of New South Wales, Sydney, Australia, (15)The University of Melbourne, Melbourne, Australia
Background: There is an emerging body of evidence in relation to the perspectives of autistic individuals and their caregivers in relation to the autism spectrum disorder (ASD) diagnostic process. However, these studies have focused on previous experiences that occurred before, during or after diagnosis. There is scarce information describing the future preferences or recommendations of these individuals.

Objectives: This viewpoint survey aimed to understand the relative importance of different aspects of an ASD assessment from the perspective of people with lived experience of autism.

Methods: Thirty-eight autistic adolescents / adults (>12 years, n=12) or caregivers of autistic individuals of any age (n=26) participated in the viewpoint survey. The median age of participants was 42 years (range=12-59), and most were females (n=29). This project employed a Q-methodology, where participants sorted 66 statements regarding the ASD diagnostic process from least important (-5) to most important (5). After extraction from the online Q sort software, the PQMethod software package was used to analyse the results according to the prescribed method. This supported the retention of three factors, hence results were generated through by-person varimax rotation factor analysis. The three-factor varimax solution accounted for 42% of the explained variance in the sample. Factor arrays were created to define the three factors. The factor arrays were interpreted to formulate viewpoints by a group of five researchers familiar with Q methodology research and the ASD diagnostic process.

Results: The first viewpoint, “Get it Right”, was defined by 18 participants (4 autistic individuals and 14 caregivers), and explained 18% of the variance. Individuals in this viewpoint valued trained and experienced diagnosticians, along with a comprehensive assessment process.

The second viewpoint, “Make it Easy”, was defined by 12 participants (5 autistic individuals and 7 caregivers), and accounted for 15% of the variance. This viewpoint was characterised by prioritisation of convenience, accessibility and support, while not compromising accuracy of assessment.

The third viewpoint, “See it All”, was defined by 5 participants (3 autistic individuals and 2 caregivers), and explained 9% of the variance. This viewpoint highlighted the importance of holistically evaluating the needs of the individual and their family, and tailoring the assessment to the unique circumstances.

Conclusions: The complexity of developing an ASD diagnostic process that is acceptable to all autistic individuals and caregivers was highlighted by this viewpoint survey, given the three contrasting perspectives identified. This emphasises the importance of the guideline allowing sufficient flexibility to meet the varied needs and wants of end-users.