My first job out of college was working the night shift at a residential academic program for adolescents with “severe developmental disabilities” (almost all were lumped into this vague category). I can’t say that it was glamorous or even intellectually stimulating; mostly I mopped the floors and cleaned the toilets.
But my time there changed me forever. It was a stark introduction to the ways in which our society devalues people with severe behavioral and intellectual challenges; to the limits of psychiatry, neurology, special education, and behavior modification; and to the enormous emotional and financial toll borne by families with children with special needs (and how they so often manage to bear that toll with patience and grace).
Three decades later the world often looks much different. Not far from my office — and in dozens of clinics around the world — kids with similar developmental problems are having their exomes (and sometimes genomes) sequenced.
Read the full article at Genome Magazine »
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