Rethinking Current Models of Nonverbal Autism

Autism is described as a spectrum disorder ranging from mild to severe, with the nonverbal falling into the most severe end of the spectrum. These individuals are usually referred to as low functioning and by default labeled mentally retarded, yet basic questions about their receptive language, cognitive abilities and emotional characteristics remain unanswered. There is currently no scientifically-validated diagnostic criteria for this group and no standardized terminology to describe what is meant by “nonverbal”. Recent genetic research (ie re CNVs, Sebat, Wigler, etc) suggests tremendous heterogeneity in the etiology of ASD implying that the simple model of a spectrum ranging from mild to severe will longer hold. The nonverbal segment of the population is also unlikely to arise from a single etiology and thus the absence of expressive language may not correlate with one large subgroup characterized by low cognitive ability. Research focused on the nonverbal population is just getting started with the first scientific meeting on this subject taking place in April 2010 at the NIMH and a subsequent RFA being issued. Autism Speaks has also launched a small number of research projects on this subject. It is expected that nonverbal autism will continue to grow as a focus of the research community and that funding will also increase for this exciting and largely unexplored area of autism research.

Videos will be shown including some examples of nonverbal individuals who have learned to communicate using literacy-based approaches.

Portia Iversenis the Co-founder Cure Autism Now (CAN) research foundation, the Autism Genetic Resource Exchange (AGRE) gene bank, and founder of the International Meeting For Autism Research (IMFAR). Her current focus of interest is nonverbal autism, in 2007 she published the book: 'Strange Son’, which chronicles her experience with her nonverbal, autistic son Dov, who began to communicate at the age of nine; the book has been translated into 10 languages. Iversen founded the Descartes online community for families with nonverbal children with autism, which now serves more than 3000 members. She is currently a member of the National Institute of Mental Health Advisory Council.

Websites: Portiaiversen.com, Strangeson.com