Landau- Kleffner Syndrome: An exploration of parent experience of the diagnostic process

Landau-Kleffner syndrome (LKS) is a rare childhood disorder that is often misdiagnosed as autism or childhood psychosis (CDD) because of overlapping symptom presentation.  Favorable prognoses in LKS depends on early diagnosis and treatment.  While much is known about the clinical basis for LKS diagnosis, the study sought to understand the impact of the parent’s lived experiences with this process, which has not yet been investigated. Using a phenomenological approach and the medical model as a conceptual framework, semi-structured interviews were conducted with 7 parents of children diagnosed with LKS.  Parent quotes were coded, categorized, and then clustered into themes to describe parents' experience of the LKS diagnostic process.  Results revealed that decreased LKS awareness within the medical community posed the greatest barrier to diagnosis.  Lack of awareness prevented effective communication between parents and doctors, caused doctors to miss the diagnosis even in children presenting with classic LKS signs, and forced parents into the critical role of advocates in order to overcome obstacles to prompt LKS diagnosis.  These findings contribute to the existing literature by identifying barriers to LKS diagnosis and informing initiatives aimed at improving and expediting LKS diagnosis.  Implications for positive social change include increased knowledge of the public and the health care community regarding the presence of LKS as a distinct disorder, which will lead to awareness of its resemblance to autism and CDD. This will decrease the social and economic burden of autism by improving the prognosis for children with LKS who would otherwise be diagnosed as autistic.