Epilepsy in Young Adults with Autism: A Prospective Population‐based Follow‐up Study of 120 Individuals Diagnosed in Childhood

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Abstract
Summary:  Purpose: Little is known about the long‐term outcome of epilepsy in autism and the epilepsy characteristics of adults with autism. This prospective population‐based study was conducted in an attempt to point out differences on a group basis between adults with autism with or without epilepsy, and to describe the occurrence, the seizure characteristics, and the outcome of epilepsy in autism. Methods: One hundred eight of 120 individuals with autism diagnosed in childhood and followed up prospectively for a period of 13–22 years were reevaluated at ages 17–40 years. As adults, the majority had mental retardation and autistic disorder or autistic‐like condition. Interviews were performed with the caretakers of 42 of 43 individuals with a history of epilepsy, and their medical records were reviewed. Results: Adults with autism and mental retardation constituted a severely disabled group. On a group basis, both the cognitive level and the adaptive behavior level were lower in the epilepsy group than in the nonepilepsy group (p < 0.05). In all, 38% had epilepsy. One third had epilepsy onset before age 2 years. Remission of epilepsy was seen in 16%. Partial seizures with or without secondarily generalized seizures were the dominating seizure type. Conclusions: In a community sample of individuals with autism followed up from childhood through to adult age, one of three had epilepsy since childhood/adolescence. Severe mental retardation and autism are significantly associated with epilepsy, especially in female patients. Seizure frequency has a great impact on the individuals' lives. Specialist medical care is needed in this severely communication‐disabled population.