Research Themes

Our data was collected through interviews and surveys with adults who have a diagnosis of autism spectrum disorder or are self-identified as being on the autism spectrum. We spoke to individuals about:

• The process of getting an autism diagnosis/label
• The diagnosis/label itself as a category
• The consequences of receiving an autism diagnosis/label

We categorised our project into these three broad themes – process, category and consequence – as based on Annemarie Jutel’s (2009) model of the sociology of diagnosis. This model scruitinises the process of diagnosis and examines how and why particular clusters of symptoms are ‘lumped together’ or split apart to conceptualise particular conditions such as autism spectrum conditions. The model further examines how the consequences of diagnosis can shape diagnosis. Overall, it highlights diagnosis as socially contingent and challenges the idea of diagnosis as ‘a moment of clinical purity’ (Latimer, 2013). Basing our research around Jutel’s model, we hope we have added to it and developed the concept further.

We explored:

Process

• How clinicians make diagnostic decisions and how social factors influence these.
• How diagnostic tools such as ADOS are used to determine diagnosis.

Category

• Whether there is a selection bias in research on autism against those with intellectual disabilities.
• The positive attributes and abilities that autism brings according to adults with an autism diagnosis.
• The functional purpose of ‘self-regulatory behaviours’ to an autistic person.

Consequences

• How Neurodiversity is understood by adults with autism.
• The political activities and locations of the Neurodiversity movement.
• Whether the label ‘autism’ changes the way behaviours are perceived by others.
• The autism community’s view on the development of drug treatment.
• The experiences of people with autism diagnosis of treatments, interventions, services, accommodations and care, exploring which are welcomed and which are not welcomed, and why.

We explored how adults with autism experience self-diagnosis and the process of acquiring a label.

Second Year Summary

Read our 2017 Annual Report