Tuesday, December 20, 2005

Asperger Syndrome how it feels

How Autism FeelsDecember 20, 2005 Kate Goldfield

When I was a freshman in college, someone asked a friend of mine if I was autistic. Having almost no knowledge about what autism was other than a dim memory of a "Rain Man"-like character rocking in the corner and nonverbal, I was appalled. How could anyone possibly think I was like that? Two years later, I rediscovered the subject of autism after seeing a Lifetime movie about it. I was intrigued by some of the concepts in it and began reading everything I could find about autism, purely out of intellectual interest.

I awakened to the notion that a lot of what I was reading sounded like me. I learned that autism is actually a spectrum disorder, which means that there are people who are affected by it on different levels. I discovered something called Asperger's Syndrome, which is high-functioning autism and markedly different in its presentation from what we could call classic autism. People with Asperger's Syndrome, or AS, I learned, have trouble reading social cues and understanding nonverbal language. They have trouble knowing what to say in conversations, when to start speaking and when to stop speaking. They fail to notice subtle conversational cues like change in tone of voice or body posture. In fact, they have trouble with social language in general. They are often highly intelligent, especially with special interests that they pursue, but have trouble conversing. Because of this, they have trouble making friends and many will go through all of high school and college without having ever really made a good friend. Sensory issues are very prevalent in people with AS. They can hear the sound of a person tapping their pencil from across the room. The smell of cigarette smoke or cleaning agents will drive them crazy. Lights are either too bright or too dim and they often have a difficult time finding clothes that they can bear wearing because of the way they feel on their skin. Often, they will have sensory overloads and need some time out from an activity to process all that is happening to them. For this reason, eye contact can hurt. Social interactions for someone with AS can be like trying to put together a 500-piece puzzle before the time is up. We even speak differently; our conversational manner tends to be quite genuine. We say what we're thinking. It is this genuineness, though, that endears us to many people. We don't play guessing games with people; we say what we mean. As employees and friends, we are loyal. We have the ability to focus completely on tasks of interest for hours at a time and also to remember huge amounts of facts related to our interests quite easily. When I was diagnosed with AS last summer, it came as an enormous relief. I finally knew why I had always hovered on the outside of social life, always wanting to join in but somehow never being able to figure out quite how. I could find other people who understood me and were like me. Unfortunately, many people are not as fortunate as I was to gain this understanding about myself. There is comparatively little information available about AS. It was put into the Diagnostic and Statistical Manual of Disorders (the official handbook of what is and what is not a psychological disorder) in 1994. There are many people out there who wonder why they are different, who are desperate to find the missing piece, but have never heard of AS. I explain all of this just to give the average person an idea of what it is like to live on the autistic spectrum. I feel that it is only by learning about others' struggles and truly trying to understand them that we can build a world that is safe for everyone - a world where we can grow and improve because we are taking advantage of everyone's strengths, not just the strengths of a selective few. That's the kind of world I want to live in. It's the kind of world we all want to live in.Kate Goldfield is a senior at Goucher College in Towson. She wrote this for the Baltimore Sun.

Thursday, December 01, 2005

Parents guide to Asperger Syndrome and Definition

Two decades ago there was little hope when a child was diagnosed with autism. Parents were often told their child couldn't succeed in school and would have to be institutionalized. Much has changed in the intervening years, particularly in how science understands what today is considered to be a spectrum of autism disorders and how well many children respond to treatment.
However, it still can be a numbing and confusing experience for parents who receive a diagnosis that their child has autism and then must sort through the wide variety of treatment approaches available. Helping parents deal with this experience is why two leading researchers, Sally Ozonoff and Geraldine Dawson, have written "A Parent's Guide to Asperger Syndrome and High-Functioning Autism," which has just been published.
Ozonoff is an associate professor of psychiatry at the M.I.N.D. Institute at the University of California, Davis, and Dawson is a psychology professor and founding director of the University of Washington's Autism Center. Co-author of the book is James McPartland, a UW doctoral student working with Dawson.
The book is designed to be a road map to help parents of children with high-functioning autism and Asperger syndrome through trying times, starting with diagnosis progressing through childhood and into adulthood.
Researchers now know that there is a spectrum of autism disorders affecting people in varying degrees of severity. People with the most severe form, or what is termed classic autism, are often very handicapped and may be mentally retarded. In its most severe form such children are nonverbal, aloof from other people and exhibit very restricted and repetitive behavior.
People with high-functioning autism and Asperger syndrome are not as severely affected. A child with high-functioning autism fits the definition of autism but has such better cognitive and learning abilities. These children have initial difficulty acquiring language but eventually are able to speak at a level appropriate for their age. Children with Asperger syndrome are similar to those with high-functioning autism but have fewer symptoms and have little or no difficulty developing language at the appropriate age.
Dawson and Ozonoff estimate that autism spectrum disorders affect up to 0.6 percent of the U.S. population, upwards of 500,000 people. Two-thirds of those appear to have high-functioning autism or Asperger syndrome.
"We are seeing an increasing number of these children in our clinic, and more cases of Asperger syndrome and high-functioning autism are being diagnosed at a younger age," said Dawson. "The prognosis for many of these children can be quite positive compared to 20 years ago. Today 25 percent to 30 percent of them finish high school and a quarter of those go on to college."
The book's guiding principle is to focus on a child's strengths, not weaknesses, and to have parents channel their child's unusual behaviors and ways of thinking into positive achievements.
"There are many examples of children with Asperger syndrome or high-functioning autism who grew up to be successful adults. The key was their being able to use their strengths," said Dawson. "There is a tendency to focus on children's problems so they don't get a chance to figure out how to use their strengths. These children have unique ways of learning so it is very important to identify a child's learning style. This can help them blossom rather than flounder."
The book takes parents through the diagnostic process, outlines the various treatments available and discusses the impact of Asperger syndrome and high-functioning autism at home, at school and in the social world of children. It also prepares parents to help their children as they enter late adolescence and adulthood. The authors discuss what issues parents are likely to face, what their options are and what is scientifically known so they can make the best decision for their child.
"Autism is a test of unconditional love for parents because in the beginning many children don't give any emotional feedback. The parents' love carries the relationship for a long time," said Dawson.
"Most parents are devastated and the impact on the family is great. Divorce is very common and other siblings sometimes can be neglected. But many parents rally and are able to start on this journey to find their child. They need to know this process is a distance race, not a sprint, and that eventually their child can lead an extremely satisfying and productive life.
"There is no reason why many people with Asperger syndrome and high-functioning autism can't get married, go to college, get a job and give to society. All are reasonable goals that can be reached, but usually with a lot of work," she said.###
For more information, contact Dawson at (206) 543-1051 or dawson@u.washington.edu or Ozonoff at (916) 734-6068 or sally.ozonoff@ucdmc.ucdavis.edu
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