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this article is written by Jen Christensen; it is from HOI News on 5/14/08
The Interactive Autism Network (IAN) is an Internet site that was launched last year to bring together parents and scientists throughout the U.S. to improve the understanding of autism and accelerate research about the disorder. Families affected by autism are invited to register with the site and share information about their family medical history and that of the autistic child.
The input from the families builds a database of valuable information that can help researchers find clues leading to better diagnosis and treatment of children with autism. In addition, families who register can be matched with local and national research studies that further understanding about autism.
In April, IAN celebrated its one-year anniversary. To date, more than 22,000 people have registered with the site. In addition, more than 70 research studies are using the data derived from families.
Autism is a term used to describe a group of developmental disabilities that fall under the name autism spectrum disorders. It encompasses autistic disorder, pervasive developmental disorder – not otherwise specified and Asperger syndrome.
Autism is characterized by impairments in three main areas: social interaction, communication and behavior. Infants are social by nature. But children with autism don’t display the same interest in social interaction. They may avoid eye contact and be resistant to cuddling or hugging. As they grow older, they often prefer to play alone and have difficulty understanding social cues.
Some children with autism never learn to talk. Others may have normal language development for many months and then suddenly stop communicating. Still others may not develop language skills until late in childhood. Some of those who can speak may repeat words or phrases or use words out of context. Facial gestures and body language often don’t match the verbal expressions.
Children with autism may exhibit unusual, repetitive behaviors, like arm flapping or toe walking. They often prefer sameness and resist any changes in routine. Some spend a considerable time in unusual activities, like spinning objects, setting up toys in a perfect line or separating toys by color or shape. Some may become preoccupied with a narrow topic of interest.
According to the Autism Society of America, autism occurs in one out of every 150 births in the U.S. Boys are affected four times more often than girls. Currently 1.5 million Americans have some form of autism and the prevalence is increasing. Within the next decade, the condition may affect up to four million Americans. The lifetime cost of care for a child with autism is $3.5 to $5 million.
There is no cure for autism and researchers don’t know the cause. The range of symptoms varies widely from mild to severe and there are many different manifestations of treatment. The earlier a child is diagnosed, the sooner interventions can be started and the greater the likelihood a child will reach full potential. Although most children have some signs of autism by 18 months, many aren’t diagnosed until three or four. In fact, the National Institutes of Mental Health estimates only half of all children are diagnosed before kindergarten.
Researchers say there is still a lot to learn about autism. One of the greatest sources of information comes from the parents and caregivers of autistic children. Parents often notice subtle signs that a child is “different” before physicians. In many cases, it’s the parents who instigate the push for a proper diagnosis, better treatments and improved educational interventions.
For more information about the programs at Kennedy Krieger Institute, http://www.kennedykrieger.org For general information about autism:
Autism Society of America, http://www.autism-society.org Autism Speaks™, http://www.autismspeaks.org Centers for Disease Control and Prevention, http://www.cdc.gov/ncbddd/autism
source: This is Jen Christensen’s article from HOI News online, 5/14/08 www.hoinews.com