Community views on the assessment and diagnosis of autism: Principles to guide clinical practice

This study aimed to identify guiding principles to underpin assessment and diagnosis of autism to improve the quality, consistency and accuracy of services provided to individuals and their families. An online survey and focus groups were used to capture community perspectives of members of the Australian autistic and autism communities. A total of 871 individuals participated across the research activities, including autistic individuals (<i>n</i> = 253), parents of autistic individuals (<i>n</i> = 344), practitioners (<i>n</i> = 325) and members of organisations with an interest in the assessment and/or diagnosis of autism (<i>n</i> = 115). Three overarching themes, encompassing 15 codes, representing the principles that should underpin practice across the assessment and diagnostic process were developed (a) placing the person at the centre of the process; (b) understanding and valuing the whole person and (c) improving quality and access. Assessment and diagnosis for autism should go beyond diagnostic decision-making to include understanding of individual needs and identifying support pathways. The principles identified serve as a first step to guiding practitioners in their approach, ensuring they work in ways that promote best practice, reflect the perspectives of autistic people and engender meaningful outcomes for individuals and families that are independent of receiving a diagnostic label.Lay AbstractThis study looked to identify principles of practice that could help make autism assessments and diagnoses better for autistic people and their families. To do this, the researchers asked people from the autism community in Australia to share their thoughts through an online survey and focus groups. A total of 871 people took part. This included autistic adults, parents of autistic children, professionals like psychologists and speech pathologists and people from autism-related organisations. From what people said, three main ideas stood out: (a) putting people at the centre of the process, (b) looking at the whole person and (c) improving quality and access to services. The study found that getting a diagnosis is just one part of the process. It is also important to use the assessment to help people understand themselves better and find the right support. The principles highlighted in this study can help guide professionals to do a better job when assessing autism. They encourage practices that are respectful, person-focused and based on what autistic people and their families say is important. This can lead to better outcomes for everyone, no matter whether a diagnosis is given or not.