ABSTRACT
This chapter provides voice to parents, families, and indeed, individuals living with autism spectrum disorder (ASD) on a daily basis. A parent and advocate within the field provides a brief but welcome digression into the historical perspective of ASD, and contrasts her son's struggles with her own diagnosis of Parkinson's disease. Juxtaposing individual stories of outstanding achievements with heartbreaking journeys of discovery and struggle, these parents provide a unique insight into daily life and the barriers artificially placed on these families, perhaps unintentionally, from society. The chapter explains families touched by ASD as a primary diagnosis, or children with Phelan-McDermid-Syndrome, a rare genetic disorder, that often also gives rise to the phenotype of ASD. These are the voices of those so often unheard by the academic and scientific communities—but the voices that need, and deserve, to be heard.
