Living with Autism without Knowing: Receiving a Diagnosis after 50

Background:  

Autism was first included in the DSM in 1980, and classifications and behavioural symptoms have been refined in subsequent editions. Since its inclusion in DSM, the number of cases of diagnosed autism has been increasing, and prevalence rates are continually revised upwards. Individuals with autism born before 1980 are less likely to have received a diagnosis of autism, especially if they are relatively high-functioning. Our study investigated the experiences of individuals receiving a diagnosis of autism in their 50s. 

Objectives:  

Our aim was to recount the experiences of receiving a diagnosis of autism later on in life and to uncover commonalities within this experience.

Methods:  

A free association narrative interview was conducted with nine individuals all of whom had received a diagnosis of autism within the past two years. Key questions were asked, but the individuals where able to take the interview in any direction they wished. A thematic analysis was performed on the data using an interpretive phenomenological perspective.  

Results:  

Participants recounted feeling different from others from an early age. All of the individuals had come to identify themselves as bad, evil or alien. Diagnosis, even in later life, was seen as a relief and a revelation, which enabled participants to re-evaluate their pasts and begin to explore their new identites. Many of the participants had sought a diagnosis after one of their children received a diagnosis of autism. 

Conclusions:  

Research into older adults with autism is an underdeveloped field. Researchers first need to explore the experiences of older adults with autism, in order to produce useful stakeholder centred research. The experience of receiving a diagnosis later on in life is largely positive and liberating. More research needs to find ways of identifying autism in individuals who may have jobs and families and do not consider themselves to fall within the traditional stereotyped image of autism.