Exploring the Experience of Seeking an Autism Diagnosis As an Adult: Findings from Online Submissions and Interviews

Background: Ideally, diagnosis of Autism Spectrum Disorder (ASD) should occur by three years of age. However, due to a number of factors an accurate assessment often does not occur until between six and eight years old. People who are not diagnosed at early ages experience greater challenges to receiving an accurate diagnosis as time progresses. There is a limited body of research, particularly within the Australian context, describing the experiences of adults who seek an ASD diagnosis.

Objectives: This project aimed to explore the diagnostic experiences of adults who seek an ASD diagnosis as an adult.

Methods: This qualitative study used two unique data sets: online written submissions and interview transcripts. Australian adults who identified as being autistic were eligible to participate. A total of 36 participants were involved in this study, with a median age of 42 years (range = 27 – 80 years) and a gender distribution of 24 females and 12 males. Twenty-two completed an online submission answering the question “From your perspective, what are the most important considerations to address when developing a national guideline for the diagnosis of autism spectrum disorder in Australia?” Online submissions had to be written in English and had a limit of 100 words. Semi-structured interviews were conducted with 14 participants, where experiences before, during and after diagnosis were discussed. Online submissions and interview transcripts were imported into NVivo 11 and were analysed using thematic analysis.

Results: Three major themes emerged from the data describing experiences prior to, during and following an ASD diagnosis in adulthood.

Experiences prior to ASD diagnosis were focused primarily on the motivators that ultimately led to diagnosis, such as other family members having an ASD diagnosis and feelings of being “different” while growing up.

Experiences during the ASD diagnostic process were varied in terms of logistic factors, approaches and barriers. Logistic factors included who, where and how the assessment was conducted. Approaches that were valued included strengths focused assessments where rapport was built with a key contact person and tailored communication was utilised. Frequent barriers to diagnosis included the cost of assessment, availability of appropriately skilled assessors, masking strategies hindering symptom identification (particularly among women) and sensory distress associated with assessment locations.

Experiences following ASD diagnosis were typically positive, characterised by empowerment and self-realisation due to receiving the ASD diagnosis. However, negative experiences were also reported, such as stigma. Many of the participants reported unmet needs and difficulty in accessing important supports following diagnosis.

Conclusions: The online submissions and interviews revealed varied ASD diagnostic experiences of adults in Australia, and unmet needs in the current diagnostic system were highlighted. Participants reported the benefits of having an ASD diagnosis. Access to ASD diagnosis for Australian adults may be improved with the new nationwide diagnostic guideline.