WHAT IS AUTISM?

From a clinical point of view, Autism/Pervasive Developmental Disorder (“autism”) is a lifelong neurologically-based developmental disability characterized by impairment in reciprocal social interactions, impairment in communication, a restricted repertoire of activities and interests, and abnormal or inconsistent responses to sensory stimuli.

From an interpersonal point of view, autism involves an underlying problem in regulating expressive movement. People with autism are challenged to keep their physical gestures and sensory responses in balance and control. These sensori-motor impairments cause difficulty in interacting with other people and with the environment.

Autism is a spectrum disorder, meaning characteristics present themselves in a wide variety of combinations, with impairment ranging from mild to severe. At present there is no treatment for the core features of this lifelong disability, although medical and behavioral interventions can foster learning and social-skill development.

Autism is a distinct developmental disability. It was first independently identified as a syndrome and described by American child psychiatrist Leo Kanner in 1943 and by Austrian pediatrician Hans Asperger in 1944. As recently as the 1970s, some mistaken theories considered autism to be a kind of psychosis. Autism differs from mental retardation in that there are uneven areas of strengths and challenges, rather than a generalized delay. A person with autism may have a tested IQ score above 70, the cutoff for mental retardation, and still be functionally disabled. Autism differs from mental illness in that the need for supports is ongoing rather than episodic.

Misunderstandings about the nature of autism, combined with a lack of appropriate alternatives, until recent years doomed most youth and adults with autism to a bleak existence in the back wards of state institutions. Today, however, thanks to research progress and the federal initiative to provide free, appropriate public education to all children with disabilities, the first generation of people with autism to have been raised with their families and to have received an education instead of being sent to institutions has come of age. Their families reject assumptions that isolation and low expectations await their children as adults. Current knowledge demonstrates that adults with autism can lead ordinary lives, hold real jobs, and contribute to their communities.

In fact, adults with autism want to lead regular lives. Having grown up in typical families, lived in normal neighborhoods, and been educated in public schools, they expect their lives to unfold in the usual pattern: moving out of their parents’ houses to places of their own, perhaps going to college, getting jobs, paying their own bills, meeting new people, and volunteering for community projects.

To make this possible, adults with autism often require lifelong community services, individualized accom-modations, and other forms of assistance. These may include coaching and prompting in carrying out daily household routines, on-the-job supports, and accompaniment to participate in community life. In addition to coordinated supports and accommodations,
adults with autism need help getting affordable homes or apartments in ordinary neighborhoods. Adults with autism want to lead regular lives.