The Meaning of the Diagnosis of Autism for Adults. a Phenomenological Study

Background:  Autism and ASD (autism spectrum disorder) are concepts that cover many realities and that have different meanings for different people. For many people, autism as a term refers to a specific neurological and biological reality. Also, the idea of autism as a genetic condition has gained popularity over the last years, and a large part of the research is done in this field. Much less is known about what it means to have a diagnosis of autism for the person herself. Indeed, although recently more attention has been paid to the values and opinions of people with a diagnosis of ASD with regards to research aims etc, very little research has been done on the meaning of such a label for the individual.

Objectives:  With this study, we wanted to investigate what it means to have a diagnosis of autism in adulthood for the individual in question, using a phenomenological approach.

Methods: In the period from June 2016 till August 2016 we have performed in-depth interviews with 22 adults in Belgium and The Netherlands (aged 24-60) with a diagnosis of ASD. We used a phenomenological interview method, which means we have set aside our assumptions about what autism is, and we assume that the lived reality of having a diagnosis is an equally important source of information. Respondents had the opportunity to choose an oral interview, or chat sessions, in order to accommodate for those who feel uncomfortable with the former. The interviews were analyzed using a thematic inductive analysis. Interviews and analysis were done by the main researcher and a co-researcher who had received a diagnosis of Asperger syndrome in adulthood. This allowed for different perspectives on the data to be incorporated in the analysis.

Results:  On the one hand, our respondents welcomed their diagnosis as a scientific and ‘brain-based’ explanation for difficulties they experienced in their lives. An experience all our respondents shared was that of heightened sensorial awareness. On the other hand, they struggled with the question how to integrate their diagnosis with their personal feeling of “self”. Specifically they questioned or even opposed stereotypes about autism, for example by referring to the fact that they do experience empathy. Moreover, many struggled with finding adequate help and assistance after the diagnosis: help was either nonexistent or not tailored to the specific needs of the individual, and/or based on general assumptions about what is autism.

Conclusions:  An autism diagnosis in adulthood can be conceived as a “walking cane”: respondents appreciated the explanatory power of the diagnosis, and considered this a necessary first step in their therapeutic process. How the diagnosis would actually help them therapeutically was far less clear. With this study we hope to demonstrate that input from those diagnosed with autism is an essential part in improving the therapeutic process.