History is filled with ideas, experiments and programs with good intentions that sometimes go horribly wrong. One classic example of good intentions gone wrong was the thinking and policies from the early to mid-1900s of “institutionalizing” people who suffered from cognitive, emotional and neurological disorders. The original intent of this “humanistic” concept was to create an understanding and supportive environment for people with special needs. Unfortunately, as well-intended as the idea was for its time, the results were a disaster.

Not far from here across the state line in Pennsylvania sits the abandoned self contained “town” of Pennhurst State School and Hospital where individuals with a variety of cognitive and emotional disorders were separated from their families and communities and housed together in what was to be a specialized healing utopia. The sprawling institution had its own residences, food service, medical care and recreational facilities that were supplied by a rail line coming directly onto its self-contained campus.

While early records showed a sparkling, well-staffed school and hospital with sparkling waxed floors and crisp uniforms, less than 50 years later the scene was nightmarish. Overcrowded by a mixed population of individuals who were “different” from others in some way — including people with autism, cerebral palsy and even seizure disorders — the institution became underfunded and understaffed. It was lacking in a coherent treatment program for the wide variety of different individuals for whom it attempted to provide care. It ultimately became a run-down, squalid environment with rampant allegations of neglect and abuse of the very people it was intended to help.

With April recognized as Autism Awareness Month, it is somewhat relieving to know that this way of thinking and these policies have now been stopped in the U.S. and that there is now a much better understanding of the treatment of these different difficulties. Seemingly self evident today, most people with these challenges are best helped by remaining involved with their family and utilizing outpatient resources like counseling, medication and occupational therapy. Those whose problems are severe enough to be more suitable for residential treatment do best in smaller programs with a stable, caring staff rather than in large, government run institutions.

It is hard to imagine that individuals suffering from autism were once treated this way. Still, even with the many advances in understanding autism, the difficulty remains somewhat of a mysterious puzzle to scientists. In fact, the term “autism” is not a single disorder but describes a collection of complex developmental brain difficulties that are suspected of being related to each other. Diagnostically, these disorders are known as Pervasive Developmental Disorders (PDD), Asperger’s Syndrome, Rett Syndrome and Childhood Disintegrative Disorder which are now collectively known as Autism Spectrum Disorders (ASD).

Until recently it was believed that the occurrence of autism was around one in every 110 children, or a little less than one percent of the population. Recent surveys of parents though are doubling that estimate and suggesting a rate of 1 in 50 children. The actual number probably lies somewhere closer to 1 in 88 children but there is no doubt that it is being diagnosed more frequently. This may be due to greater awareness of the disorder and also because of the inclusion of milder types of difficulties into the diagnostic framework. A still as yet unexplained finding in these statistics are that boys are three times more likely to be diagnosed with autism spectrum disorders than girls.

Many people don’t understand that there is no definitive test for autism such as a blood test, genetic or biologic test. It is only identified based upon the observation and appraisal of a collection of behaviors. In other words, there is still a long way to go in fully understanding the causes and treatment of autism. Children with autism can look just like any other child but their difficulties lie in brain moderated aspects of thought, behavior, perception and communication. Autism is primarily a social communication disorder characterized by developmental delays involving restricted, repeated and stereotyped patterns of behavior, interests and activities.

In general, autistic children prefer routine and familiarity in their day to day life and can become distressed by sudden changes and transitions. Socially, a child with autism may show difficulty making eye contact or using language to communicate with others. They may avoid interacting with people they don’t know and have trouble showing emotional empathy or understanding of others. They may have an interest in numbers or in patterns and they may repeat memorized phrases or “catch-lines” and use hand gestures rather than words to communicate. As a result, other children may view them as different and they may have trouble making or keeping friends.

When they are young, autistic children may show aggression if they are pressured to do something they don’t want to do. Sometimes, autistic children show a very short attention span, repetitive motor movements and an unusual preoccupation or obsession with a specific or even an unusual interest. They may also have a heightened or “hyper” sensory sensitivity in sight, smell, sound, touch and taste. This may result in them noticing smells or other environmental conditions that others don’t. Examples are when children “can’t stand” the sound of other people chewing at mealtime, or covering their eyes because it is too bright or having to cover their ears in trying to reduce over-stimulation.

Treating autism involves applying multi-modal approaches including structured educational and environmental programs, counseling, behavioral reinforcement, occupational therapy, communication therapy and counseling. Counseling and group support is also often helpful for their stressed families as well. This multi-modal approach in a natural and supportive environment is a much more humane and productive approach compared with separating children from their families and placing them, often against their will, into government sponsored institutions-where they were ultimately mistreated and forgotten.

While we have come a long way in understanding autism, there is still a long way to go. For more information, contact the Autism Society of America located nearby in Bethesda or look online at www.autism-society.org. You can also learn more about autism at autismspeaks.org and by contacting your local autism support group. Without any doubt, in the near future, more will be understood about the causes and treatment of autism. Don’t be surprised if someday, even our current approaches might seem as arcane — but hopefully not as inhumane — as past models did.