Friday, December 09, 2005
Wednesday, December 07, 2005
Sunday, December 04, 2005
Thursday, December 01, 2005
Wednesday, November 30, 2005
Tuesday, November 29, 2005
'Mom, I'm not like that," 21-year-old Tom Iland told his mother as they watched a TV news report about a young man with Asperger's syndrome who killed two neighbors in Orange County, Calif.
It was a poignant moment for 48-year-old Emily Iland. Her son, who also has Asperger's, was worried that others would think him capable of such violence.
It wasn't just Tom. Since the shootings in Aliso Viejo, Calif., people with Asperger's syndrome and their families have been thinking, talking and e-mailing one another. They have been sharing their fears and brainstorming about practical steps to allay public fears and forestall such tragedies in the future.
On Oct. 30, 19-year-old William Freund dressed in a paintball mask and cape, entered a neighboring house and killed Vernon Smith and his daughter Christina, 22, with a shotgun. He shot at others, too, before returning to his house and shooting himself. In the days afterward, it was revealed that Freund frequently posted in an online forum for people with Asperger's, a condition that causes profound gaps in the ability to read social nuances but is not generally associated with violence.Michael John Carley of New York City founded GRASP, a support group network for Asperger's syndrome and related conditions, in 2003. The shootings, he said, have galvanized his group's resolve to expand across the country. "I don't know enough about this young man to deduce if we would have been able to have an impact," he said. "Maybe there was some other diagnosis going on that we don't know about."
Carley, 41, was diagnosed with Asperger's in 2000, along with his son, now 9. "It's a very lonely place if you have no sense of shared experience with somebody with similar wiring to yours," he said.
People in the Asperger's community are not saying their disorder neatly explains the killings. In fact, some are upset that Freund's crime is being linked to Asperger's.
"What bothers me is the implication that there's something about Asperger's syndrome that causes people to do this kind of thing -- kind of, 'Look out for the dangerous Asperger people,' " said Jerry Newport, 57, who founded a Los Angeles support group for people with autism and Asperger's in 1993. He now lives in Tucson and travels frequently to speak on the topic.
"The only connection you can make between Asperger's and what happened is that his Asperger's syndrome may have set him up for ridicule as a child," Newport said.
Ways to help
Days after the slayings, Newport and others in the Asperger's community brainstormed ways to ramp up help, such as creating a crisis hot line staffed with people familiar with Asperger's and autism. They double-checked to make sure that their support groups had blanket policies of reporting threats to police.
One activist contacted the Orange County sheriff's office with an offer to put on an educational town hall meeting about Asperger's; another is in discussions with the New York Police Department about training for crisis intervention officers.
Although they don't excuse Freund's actions or know details of his case, many say they relate to some of the anguish he may have felt.
People with Asperger's, while often highly academically gifted, tend to lack basic social skills such as knowing how to read a face or hold a conversation, or when to tell little white lies. They are apt to talk relentlessly about their deeply held and sometimes quirky passions, be they city maps, industrial cooling towers or, for Tom Iland, anything pertaining to "Star Wars." The condition, which varies greatly in severity, affects an estimated one in 250 to 500 children, mostly boys.
The social awkwardness can add up to a childhood of ostracism and being the butt of playground jokes.
"I was alienated when I was in school. I was made fun of. And I did feel very alone," said Benjamin Levinson, 36, of Culver City, Calif., on the west side of Los Angeles. "I tried to make friends, but I never really could make any -- I just didn't know how." He received a string of incorrect diagnoses before finally learning in his 20s that he had Asperger's. "Looking back on my life, I know that there was a time between when I was about 13 to the time I was maybe 22 or 23, I was just really angry. ... Thank God I was able to get some help when I needed it," he said.
Life may be easier for the next generation of children with the disorder.
Today, because of far greater recognition of autism and related disorders, children with Asperger's syndrome are much more likely to receive a diagnosis early and get the help they need, such as support groups and social-skills education, said Laurie Stephens, an Asperger's and autism specialist with the Help Group. Among other things, that nonprofit organization runs Village Glen, a school in Los Angeles specifically for children with Asperger's and related disorders.
"These are people who really want to be able to get along with other people, but it just does not come naturally," Stephens said. "There are many hidden social rules, and they need to be taught them."
Iland was a Village Glen student a few years back -- and he and his mother credit it with helping him make the transition to a regular high school, then to community college. He's now a junior at California State University, Northridge, studying for a degree in accounting. He still lives at home and has a mentor to help him with life skills.
"Violence and revenge isn't the answer," he said, talking on the phone from the CSUN campus last week. "I'm a big 'Star Wars' fan, and (in the films) those who seek revenge are the bad guys."
But special schools can serve only a few. To make the Santa Clarita, Calif., area public schools easier for her son and others like him, in 2003 Emily Iland pushed to start a peer mentoring program devised by the University of Minnesota in which children with disabilities are paired with nondisabled students.
Now she is working on a new project aimed at educating those in law enforcement about Asperger's and autism. She recently convened a training session for more than 275 judges, sheriffs and attorneys in Santa Clarita and is working on a DVD aimed at teaching youth with Asperger's to interact safely with law enforcement and communicate their anxieties and frustrations instead of letting them escalate.
Perhaps none of these things could prevent a tragedy such as the one in Aliso Viejo, she said, "but we're being as proactive as we can."
Tuesday, November 22, 2005
Led by researchers in the U.S. and Canada, the study examined 26 adults diagnosed with either autism, Asperger's syndrome, social-emotional processing disorder, or both Asperger's and social-emotional processing disorder. The shared trait of these disorders is social dysfunction. The individuals took a variety of tests to measure famous face recognition, recognition of non-facial emotional cues (from voices or bodies), recognition of basic emotions (happy, sad, angry, fearful), and recognition of a complex mental state (reflective, aghast, irritated, impatient) presented by a pair of eyes.
Ten of the participants scored well within the normal range for famous face recognition, and the other 16 scored at an impaired level.
For recognizing facial expression, these two groups showed a surprisingly similar range of performance and variability. Out of a possible score of 80 points, the 10 with normal identity recognition scored an average of 62.3, and the 16 with impaired identity recognition scored an average of 59.8. Scores were also similar for recognizing non-facial expression. Out of a possible score of 84 points, the first group scored an average 59.5 and the second group scored an average 56.9.
"One might have thought that there would be a high correlation between identifying faces and understanding facial expressions, but that wasn't the case. Instead there was a correlation between facial and non-facial expression analysis," said study author Jason J. S. Barton, MD, PhD, FRCPC, a professor of neurology and ophthalmology at University of British Columbia in Vancouver. "These results suggest that problems with judging facial expressions in these patients may be related more to the processing of emotion than to the perception of faces."
Future study would include functional imaging of these individuals while they perform the identity and expression recognition tasks, Barton said.
The study received funding support from a grant by the National Institute of Mental Health, a Canada Research Chair, and a Michael Smith Foundation for Health Research Senior Scholarship.
Earlier this year Barton was awarded the Norman Geschwind Prize for Behavioral Neurology from the American Academy of Neurology.
In Autism And Related Disorders, Recognizing Emotion Is Different Than Identity
The shock finding follows interviews with 1700 families on school satisfaction levels.
A report to be released today by the Parent Autism Education Committee shows 70 per cent of parents do not believe schools are taking enough action on bullying of students with disabilities.
Frustrated parents have also complained some teachers do not accept disability and have accused individuals of behaving poorly towards their autistic sons and daughters.
Between 54 and 70 per cent of parents did not believe schools were doing enough to address their child's academic difficulties, communication, sensory needs, behavioural problems, physical wellbeing, mental health, bullying or social difficulties.
A total of 2500 South Australians are registered with Autism SA, including 1500 of school age.
Chief executive John Martin said yesterday findings on child safety in educational settings were disturbing, as was a high incidence of students being sent home or suspended.
Fifty-nine per cent of parents reported seeing a GP about stress, anxiety or depression.
Sixty-three per cent of parents said they were not regularly given any resources to reinforce learning goals at home, and 36 per cent did not consider themselves "adequately informed" about their child's progress.
Thirty-five per cent of parents with children in government schools were "concerned" or "very concerned" about their child's education.
Of those surveyed, 38 per cent said they had been forced to take their children home from school early because of behavioural issues.
Australian Education Union president Andrew Gohl said it was "a strong argument" for increased staff and resources.
Education Minister Jane Lomax-Smith said the Government had provided more than $6 million this year to support the special needs of SA school students with autism and Asperger's Syndrome.
She said the Government was "committed to supporting students with disabilities".
The Advertiser: Bullying of autistic students 'ignored' [23nov05]
Monday, November 21, 2005
ENID - A paintbrush, paint and a bare canvas changed Amanda LaMunyon's life.
Three years ago, Amanda's parents enrolled her in art lessons because she was having trouble paying attention in school.
Amanda, 10, has Asperger Syndrome, which is a milder version of autistic disorder. Asperger Syndrome is characterized by social isolation and eccentric behavior in childhood, according to the disorder's Web site.
"I wanted to find something to keep her busy and make her feel good about herself," said her mother, Sherry LaMunyon.
The art lessons improved Amanda's performance in school and uncovered a hidden talent.
"God was good enough to give Amanda her talent, and it has changed her whole life," LaMunyon said. "It's changed the way people look at her and talk to her."
Amanda's mother said it has taken time for Amanda to realize that her work is good.
"In private she'll say 'It's not very good, is it?'" LaMunyon said. "I think the only reason she thinks well of her paintings is because people tell her how wonderful they are."
Richard Irwin, developmental pediatrician at the Tulsa Developmental Pediatrics & Center for Family Psychology, said it's common for individuals with Asperger Syndrome to have a uniquely outstanding academic or artistic ability.
"People with Asperger's learn differently than other people," Amanda's mother said. "It isn't that they can't learn, it's just that they learn differently."
Amanda doesn't take credit for her talent.
"Without God and my art teacher, Mrs. Lillian Foulks, I would have never learned to paint," Amanda said. "I never thought my paintings would be anything. I always thought I was just a girl who paints."
Foulks, 76, said when she started teaching Amanda how to paint three years ago, the young student could barely sit still.
"She would paint the easel, the table, and when she got that out of her system we would paint," Foulks said. "My easels have been every color you can imagine."
The teacher said she knows what it is like to be different and can relate to Amanda's situation.
"I have dyslexia and they didn't know what it was when I was going to school," Foulks said. "They just thought I was stupid. Even my teachers didn't realize what was wrong with me."
Amanda said she hopes others will be encouraged by her story.
"My art has opened many doors of opportunity for me," she said. "I have a dream that one day my paintings will hang beside the great artists all over the world."
A painting she did of Ronald Reagan caught Nancy Reagan's attention, and soon the former first lady will have a replica.
Plans are under way for Amanda to travel to California and present the painting to Nancy Reagan, said spokeswoman Wren Powell.
"I was just flabbergasted," Amanda said. "I couldn't believe Nancy Reagan wanted one of my paintings."
Amanda has been asked to include her artwork in a book titled "A Girl's Guide to Achieving in the Arts," which will be published in about a year.
Kristen Stephens, coordinator of educational outreach at Duke University, is writing the book. Stephens said Amanda's story could be an inspiration to other young girls.
"When I first saw her artwork I didn't know about her Asperger's," Stephens said. "Now it makes it even more amazing that she has found this outlet to express herself with.
"Amanda would be an inspiration to a lot of girls and that is one reason we are writing the book, to provide role models for young girls."
LaMunyon said her daughter has taught her how to accept people as they are.
"She's a little picture of hope," LaMunyon said.
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Others have come before him offering technology that made music and media free: first there was Napster's Shawn Fanning, then the European duo behind Kazaa. Those self-styled Robin Hoods quickly found themselves shut down or forced to stay just one step ahead of entertainment industry lawyers.
The 30-year-old Cohen's invention BitTorrent is the next generation. It makes it simple to download massive, bandwidth intensive files (everything from the Lord of the Rings trilogy to the latest episode of Desperate Housewives in high def to a file containing 400 Amazing Spider-Man comic books). BitTorrent is so popular that it now accounts for at least 20% of the entire volume of the Internet. And it's attracted over 45 million users. For high schoolers and college students, using BitTorrent is as natural as wielding a cell phone.
And yet talk to Hollywood and the establishment that should be crushing him seems in awe instead: "He's obviously a very brilliant guy," says Dan Glickman, president of Motion Picture Association of America, which leads the charge in cracking down on film piracy. The BitTorrent guys, says, Glickman, "have some revolutionary ideas and interesting concepts and we have been talking with them."
What makes BitTorrent different from its predecessors is one thing: Cohen, himself. Unlike the rebels of the past, Cohen has made no attempt to allow his users any degree of privacy, and has no problem when the MPAA and it's recording industry cousin, the Recording Industry Associations of America, launch suits against people posting copyright-infringing material using BitTorrent (like the real examples above – just scroll through TorrentSpy http://www.torrentspy.com/latest.asp or Pirate Bay http://thepiratebay.org/recent.php for more). He says: "A lot of people in tech have been going 'Ha ha, we're sticking it to them' which is counterproductive, unpleasant, and unlikely to make a lot of money."
Instead Cohen has been working with the industry to try to set up a marketplace where licensed or original BitTorrentized material can be bought and sold – his company would take a cut somewhere along the lines. Think of it as part iTunes, part eBay for bandwidth-intensive content. Some Hollywood execs, like recently departed Disney CEO Michael Eisner, think the concept's time has come: in his last days in office, he gave a speech to peers in which he said they shouldn't shun technologies like BitTorrent, but embrace them, arguing that content is king. Last month venture firm DCM-Doll Capital Management bet that Cohen could indeed make BitTorrent a business, investing $8.75 million in the startup. The San Francisco-based company now has 12 people and should be up to 20 by the end of the year.
Getting Hollywood to not just appreciate BitTorrent, but make it thrive is one hurdle. The other is a personal one: Cohen suffers from Asperger's syndrome, a mild form of autism that makes concentrating on technical details a snap, but picking up on normal social cues incredibly painful. Cohen spent two years working on BitTorrent — solving a puzzle surrounding huge downloads that had plagued the Net since its early days – and even longer working on living with his Asperger's. He accomplished the first. The ultimate test of whether he has beaten the second is whether he can make the jump from brilliant coder to businessman.
The full story is here as well and has more personal info on Bram
Thursday, November 10, 2005
Marc Fleisher sits opposite me doing something which would have been impossible for him 20 years ago He is demonstrating how an object placed near on edge of a table can cause great anxiety.
He does so in an extremely articulate way, and opens my eyes, illustrating clearly the challenges he has faced during his 38 year life.
This remarkable man has a degree in maths and a masters, both from Brunel University, and has just completed his second book.
His first was an autobiography, which was in his head, chapter by chapter, in perfect order before he wrote it. The publisher barely changed a word from his first draft.
The second book, which has just been published, was harder work. It is a guide on how to deal with life, for people with autism.
Marc, who has lived in High Wycombe all his life, has mild Asperger's Syndrome, a form of autism which affects thousands of people.
He has been the victim of abuse, of misunderstanding, and of misdiagnosis. But with lots of support, and much determination and passion, he has achieved what even a few years ago, was thought to be impossible.
He is now an experienced public speaker who campaigns for rights, research, funding and understanding of autism.
"The most important thing is that people with autism deserve the same rights as everyone else. I'd like people to know that if they have any form of disability, it does not mean that you can't set yourself high goals and reach them."
He lost his mother to cancer in 1991, but she, and other members of his family, provided an essential support that has helped him succeed in so many areas.
He says: "My family have been very supportive. They always believed I that I could go further."
This contrasts to other people, including the doctor who diagnosed him as "mentally retarded" when he was young.
He was eventually properly diagnosed, and attended the Chinnor Resource Unit for autistic children through his school years. It provided exactly the right sort of help, but there are problems in the support system.
"When youngsters with autism leave school, there is often a great big void. All the support they get through their school years is gone, and we need that gap to be filled up. In many cases that can only be done through good support from the Social Services."
There is still a lack of understanding about the condition.
"The biggest gap in my life has got to be socially. I am very lonely sometimes. It is a loneliness that almost never goes away. I feel stuck on a desert island, like I can talk to my family on a radio, but don't ever get to see someone for years and years. That fear, that incredible isolation for years, that's how it feels."
There are other problems which seem less serious, but which present constant challenges.
"Autistic people take everything literally. I went for a drink with a friend in a pub, and he offered to pay for the drinks by saying "It's on the house, mate". This completely threw me, and I looked on the roof for the drinks, and was the laughing stock of the village. I only found out a few hours later the true meaning of it. So called grey areas can be a problem. If you give instructions to somebody autistic you have to be very precise.
The example of the object falling off the table describes what he calls the depth of feeling.
Marc explains: "This is a very important point and can often be overlooked. If I put an object on the edge of the table, so it may or may not fall off, an autistic person looks at this object, and sees that it might fall on the floor and make a loud clatter. Many autistic people are susceptible to loud sounds. So they will look at this object, and it will be illuminated in their mind."
He compares this to a person knowing a loved one was far away hanging off a cliff, and that they had to make it there to save them. When the autistic person makes it to the precarious object, he says: "The incredible relief and the happiness, has exactly the same intensity of feeling as (rescuing a loved one from falling off a cliff)".
He does stress that many people do not have autism as acutely as others, and that there is no known cure for the condition, so the focus must be on helping people manage and live with the anxieties.
With the help of friends he has learned to do many things in life. One hurdle was going shopping. His fear was that he would forget to pay, get arrested and be taken away. He calls that a worry chain, a sequence of events which leads to the ultimate concern separation from loved ones, or being in a situation out of his control. His other fear was getting on the the Tube and getting across London. He can now use the whole Tube network, and his next objective is to get on the buses.
The story of his life, and his second book, a guide to dealing with life with autism, are incredible achievements, but more importantly are very well written, and great to read, either for advice and guidance, or just as an insight into a slightly different, endlessly fascinating world.
When Autism Isnt A Disability (from Bucks Free Press)
When I was a freshman, 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 Rainman-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 on it. I was intrigued by some of the concepts in it, and started reading everything I could find about autism, purely out of intellectual interest. Somewhere along the way, I realized 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 all different levels. I discovered something called Asperger's Syndrome, which is high-functioning autism and markedly different in its presentation than what we could call classical autism.
People with Asperger's Syndrome, I learned, have trouble reading social cues and understanding nonverbal language. They have trouble knowing what to say in conversations; when to start talking and when to stop talking. 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 and greatly knowledgeable in many subjects, especially with special interests that they pursue, but have trouble conversing with their peers. 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 single good friend. Because of this social rejection, AS kids will often try to shut the world out.
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 hard 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. Their brains simply process information in a different way and do not organize incoming sensory information very well.
Eye contact can actually hurt for this reason. Social interactions for the person with AS can be like trying to put together a five hundred piece puzzle before the time is up - the AS person must try to search through their databases of what is appropriate to say in any given situation and then try to find an answer that matches. It is almost like speaking a different language: AS people tend to speak in a more concrete and factual way and are usually very genuine.
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 quite loyal. We have the ability to focus completely on tasks of interest for hours at a time and also to remember large amounts of facts related to our interests quite easily.
When I was finally diagnosed with Asperger's this past summer, it came as an enormous relief to me. 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 had an explanation for all the social blunders I had so painfully committed in the past; an explanation for why certain things that didn't seem to bother others bothered me so much. I could find other people who understood me and were like me. It didn't change who I am: a label like Asperger's carries some pretty heavy connotations with it, but in the end I am still the same old me, a psychology student at a liberal arts college in Baltimore, who loves country music and smoothies from Smoothie King. It just gives me a new way with which to understand myself.
Unfortunately, so many people are not as lucky as I was to gain this understanding. There is comparatively little information available about Asperger's; it was only put into the Diagnostic and Statistical Manual of Disorders (the official handbook of what is and what is not a psychological disorder), a little over ten years ago in 1994. Misinformation and a lack of information abound. There are so many people out there that are wondering why they are different, who are desperate to find the missing piece but have never even heard of Asperger's. Many people with AS do go to college; this is a disorder that does not affect intelligence, only social functioning. On this campus alone, it has been estimated to me that there are at least seven identified students with AS. There are probably many more who never bothered to identify themselves to the college or who might have it but not know.
I explain all of this just to give the average person an idea of what it is like to live on the autistic spectrum. Someone once described it to me as living next door to a candy store and never getting to go in: the feeling of wanting so much to interact with others in the way that you see everyone else around you doing but somehow not being able to work out how it is done. I feel that it is only by learning about each other's struggles and truly trying to understand them that we can build a world that is safe for everyone to live in. A kind of world where people don't have to be afraid of being different, but can instead embrace their unique challenges and strengths. A world where we can truly grow and improve because we are taking advantage of everyone's strengths, not just the strengths of a selective few. That is the kind of world that I want to live in. It's the kind of world I think we all want to live in.
Tuesday, November 08, 2005
Nearly 50% of children with pervasive developmental disorders and hyperactivity responded to the drug, but the magnitude of the response was less than that seen with children with ADHD, reported investigator David J. Posey, M.D., of the Indiana University School of Medicine here, and colleagues in the November issue of Archives of General Psychiatry.
Seventy-two children, ages five to 14 years, participated in the randomized, placebo-controlled, crossover trial. The trial included a one-week phase to test whether the participants could tolerate three different dose levels of the medication. This was followed by a four-week crossover phase during which the children were given one of three doses of Ritalin or placebo in random order to assess effectiveness.
Children showing a positive response were treated for an additional eight weeks to ensure that gains were stable. Response to treatment was assessed by parents and teachers using standardized ratings of behavior.
Thirty-five children (49%) responded to the drug, which is less than response rates of 70% to 80% reported for children with ADHD. Responders were defined as those who showed at least a 25% decrease in hyperactivity symptoms. Some children showed as much as a 54% decrease in symptoms. The effect sizes ranged from 0.20 to 0.54, suggesting a small to medium magnitude of response.
The drug did not improve symptoms of irritability, lethargy, social withdrawal, stereotypy, or inappropriate speech. Increased social withdrawal was associated with higher doses of the medication, which is consistent with adverse events reported in other studies.
Overall, 18% of the children withdrew from the study because of adverse events, most commonly irritability. Other adverse events at the highest dose included appetite decrease (24%), difficulty falling asleep (16%), and stomach or abdominal discomfort (12%).
"At present, methylphenidate is a reasonable choice to target hyperactivity in the context of pervasive developmental disorders, given modest group effects and a response rate that approaches 50%," the study authors concluded.
"However, caregivers should be cautioned about the strong possibility of adverse effects. In addition, practitioners should be prepared to suspend treatment if considerable adverse effects are reported," they added.
The authors also raised the possibility that "the use of psychostimulants added to another psychotropic medication may be associated with a greater rate of response than when used alone. For example, persons with autism already receiving an antipsychotic medication might be protected to some extent from adverse effects associated with psychostimulants (e.g., irritability, insomnia, loss of appetite)."
Ritalin is also sold under the brand names Concerta, Metadate, and Methylin. The study was not supported by any of the drug-makers.
Ritalin May Ease Hyperactivity In Autism-Related Disorders - CME Teaching Brief - MedPage Today
Rhonda Brunett and Wendy Williams
Parents of children with autism
Some kids may be misdiagnosed with Attention Deficit Hyperactivity Disorder (ADHD)
A number of people have the idea that people with autism are so profoundly affected that they can't talk. If they are talkers, many assume that they converse like Dustin Hoffman's character in "Rain Man." But autism involves a wide spectrum. Asperger's Syndrome is an autistic disorder that is at the high-functioning end of the spectrum.
Many refer to those who have Asperger's Syndrome as having a "dash" of autism, or "mild" autism. However, there is nothing mild about this syndrome. Many children diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) at an early age have been misdiagnosed. Rather, they should have received the diagnosis of Asperger's Syndrome.
A wiring issue
Asperger's Syndrome is a neurological condition. The brain is wired differently, making this disorder a lifelong condition. It affects communication, social interaction and sensory issues. Asperger's is often referred to as the "invisible syndrome" because of the internal struggles these children have without outwardly demonstrating any real noticeable symptoms. Thus, difficultly assessing someone with Asperger's Syndrome is even more impacted. In fact people with Asperger's have average to above-average intelligence, and are even referred to as "little professors."
Children with this disorder struggle with a problem and internalize their feelings until their emotions boil over, leading to a complete meltdown. These outbursts are not a typical temper tantrum; for children with Asperger's Syndrome (and for their parents), these episodes are much worse.
Many Asperger's children may appear under receptive or over receptive to sensory stimulation and therefore may be suspected of having vision or hearing problems. Therefore, it's not unusual for parents or teachers to recommend hearing and vision tests. Some children may avoid gentle physical contact such as hugs, yet they react positively to rough-and-tumble games. Some Asperger's children have a high pain tolerance, yet they may not like to walk barefoot in grass.
Early intervention is key
If any developmental delays are presenting themselves, early assessment is critical, which means being evaluated for a preschool screening. Before the age of three years old early intervention is KEY for vast improvement possibilities.
Every child deserves a chance to succeed in school and deserves a great experience when it comes to their education. It's unfortunate that many children with Asperger's are either diagnosed later in life or they are pushed through the school system. Along the way, they are often referred to as weird, odd or very different from the other children. Because of their often above-average intellect, some of these children could be future CEO's, scientists, or other prestigious professionals. This is a silver lining for weary parents.
Take away tips: Characteristics of children with Asperger's Syndrome
* Lack of social skills
* Difficulties understanding the subtleties in conversation or abstract concepts
* Poor eye contact
* Taking slang literally ("Toss the dishes in the sink" means the dishes will be thrown into the sink)
* Often plays alone; lack of interaction with peers
* Impaired fine motor skills (Writing or using scissors is difficult)
* Unabashed rule-followers
* Unusual attachments to stuffed animals (inordinate dismay when a stuffed animal is thrown)
* A diet limited to the same foods
* Ritualistic, rigid or compulsive behavior; tantrums occur when routines are broken
* Insists on watching the same movie again and again
* Lines up objects or toys
* Hand flapping or spinning
There are numerous online resources, books and support groups that can help those concerned or who want to become better educated on the subject of autism and Asperger's Syndrome.
In Illinois, many parents are turning to Asperger's coaches for help and support. To learn more about autism/Asperger coaches visit the Asperger's Tips web site.
From Autism To All-Star
Rhonda Brunett is author of the book, From Autism To All-Star (see book review for more details) or go to the From Austism to All Star web site for the story of one families journey with autism.
Autism One radio
Rhonda Brunett and Wendy Williams also gave a radio interview to Terri Small on Autism One internet radio. The audio file can be listened to online or downloaded to an MP3 player or iPod.
Autism One radio is a worldwide, web-based radio station for the care, treatment, and recovery of children with Autism.
Auties.org is a new web site for (and run by) people on the Autistic Spectrum. Its aim is to provide an opportunity for people with autism to market their skills directly to the public and seek employment. Its free for people to list themselves so spread the word!
Reality based ranting by the original Doubting Thomas
Sunday, November 06, 2005
Thursday, November 03, 2005
Tuesday, November 01, 2005
Over the weekend, over 1200 participants came together at the Reliant Park Astrodome to walk in the second annual WALK NOW event in Houston, TX! It was truly a special day for the autism community and Cure Autism Now in Houston raising over $145,000 to fund Cure Autism Now’s mission to find the causes, prevention, treatments and a cure for autism. Thank you for helping Cure Autism Now continue to take significant steps into solving some of the challenges surrounding autism.
As you head into the final quarter of 2005, keep fundraising for WALK NOW Houston to reach and surpass your fundraising goal! Donations are accepted until January 29, 2006 to help you reach your goal and collect each incentive along the way! Thank you for your hard work and raising over $145,000 for WALK NOW. Keep it up! Proceeds from WALK NOW support Cure Autism Now’s mission to find the causes, effective treatments, prevention and a cure for autism. The money you raise will enable us to fund biomedical research and innovative treatments.
Monday, October 31, 2005
Saturday, October 29, 2005
You may be wondering why Cure Autism Now and WALK NOW are so important to me and my family. My involvement stems from a very personal and deep emotional contact with this complicated disease.
My 6-year-old son, Sean, was diagnosed with a form of Autism, Asperger's Syndrome, three years ago. I am very proud of Sean and impressed with his progress so far thanks to hard work on his part, our part and an excellent program within the Cy-Fair School District.
I strongly feel that I can have a direct impact on finding causes and cures for autism. I also feel strongly that Cure Autism Now is a wonderful organization which has been instrumental in furthering autism research. In 1995, when Cure Autism Now was founded there were only 12 researches focused solely on autism. Today there are over 300. That is progress. WALK NOW gives us a tangible way to help the nearly 1.5 million other Americans affected by autism and related disorders.
I am asking for your support in helping us raise money for this worthy cause.
Any contribution you are able to make would be greatly appreciated, but I ask you to give big as there is a big need for further research. My personal goal is to raise $150.00 for Cure Autism Now and I hope to far exceed that goal. Last year I raised $775.00!
It is easiest to donate online by going to our personal webpage at Sean's CAN page.
If you are unable to donate online, you can print out a donation form from that page and hand it to me. All checks should be made payable to Cure Autism Now.
Please feel free to forward this e-mail on.
I look forward to hearing from you. I thank you very much!
Thursday, October 27, 2005
But, don't take my word for it:
"Would you enjoy a great murder mystery that delivers a ton of laughs and introduces you to colorful characters such as protagonist Aaron Tucker's immediate family, his organized crime family and some of the wackiest bad guys and cops you'll ever meet, that's delivered in a neat plot that twists and turns like a whirligig, and learn a lot about the often misunderstood world of Asperger's Syndrome? Jeffrey Cohen's As Dog Is My Witness has got it. Now, go get it!"--Dennis Debbaudt, author of Autism, Advocates and Law Enforcement Professionals
"As Dog Is My Witness" bit me with the first paragraph and never let go! I liked the story, the characters (and the author) so much I immediately ran out and bought the other two Aaron Tucker books. Now when do we get the fourth?"--Linda Ellerbee
"Funny? Of course - but also wise, suspenseful and a genuine pleasure to read."--Lee Child, New York Times bestselling author of the Jack Reacher series
If it sounds appealing to you, I urge you to find out more at www.aarontucker.com or email me at firstname.lastname@example.org and I'll be happy to answer any questions you might have. If you are impressed, I would ask that you let your friends know there's an entertaining, enlightening, funny book out there that might strike a familiar chord with them. And thanks for your interest.
Aaron Tucker Mysteries
Sunday, October 23, 2005
Monday, October 17, 2005
Saturday, October 08, 2005
Wednesday, September 28, 2005
There is hope for your child. Whether your child has received a label of Brain Injured, Autistic, Down Syndrome, PDD, Asperger’s, Cerebral Palsy, William’s Syndrome, ACC, Obsessive Compulsive Disorder, Learning Disabled, Dyslexia ADD, ADHD or any other of the myriad of labels abounding, there is hope. Most diagnosis’ come with specific lists of what to expect and what the future holds. Don’t believe them. What the future holds is not something that can be predetermined or preset. What the future holds is based upon the opportunities that are presented to the individual.
Thursday, September 01, 2005
Tuesday, August 30, 2005
Thursday, August 11, 2005
Thursday, June 02, 2005
Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute -- the inconsistency There is little argument on any level but that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look "normal" but his behavior can be perplexing and downright difficult.
Autism was once thought an "incurable" disorder, but that notion is crumbling in the face knowledge and understanding that is increasing as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism's most challenging aspects. Equipping those around our children with simple understanding of autism's most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood.
Autism is an extremely complex disorder but for this article we can distill it to what I call The Big Three: sensory processing challenges, speech/language delays and impairments, and whole child/social interaction issues. And though these three elements may be common to many children with ASD, we also must keep front-of-mind that no two (or ten or twenty) will be alike. For every child: a different spot on the spectrum. And, just as importantly - for every parent and teacher, a different spot on the spectrum.
Here are ten things every child with autism wishes you knew:
1. I am first and foremost a child -- a child with autism. I am not primarily "autistic." My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?
As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don't think I "can do it," my natural response will be: Why try?
Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical.
2. My sensory perceptions are disordered. This means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a "simple" trip to the grocery store may be hell for me:
My hearing may be hyper-acute. Dozens of people are talking at once. The loud speaker booms today's special. Musak whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can't filter all the input and I'm in overload!
My sense of smell may be highly sensitive. The fish at the meat counter isn' t quite fresh, the guy standing next to us hasn't showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they're mopping up pickles on aisle 3 with ammonia..I can't sort it all out; I'm too nauseous.
Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated. The fluorescent light is too bright; it makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There's glare from windows, too many items for me to be able to focus (I may compensate with "tunnel vision"), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular sense, and now I can't even tell where my body is in space.
Receptive and expressive language and vocabulary can be major challenges:
3. Please remember to distinguish between won't (I choose not to) and can't (I am not able to).
It isn't that I don't listen to instructions. It's that I can't understand you. When you call to me from across the room, this is what I hear: "*&^%$#@, Billy. #$%^*&^%$&*...Error! Hyperlink reference not valid." Instead, come speak directly to me in plain words: "Please put your book in your desk, Billy. It's time to go to lunch." This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.
4. I am a concrete thinker. This means I interpret language very literally. It's very confusing for me when you say, "Hold your horses, cowboy!" when what you really mean is "Please stop running." Don't tell me something is a "piece of cake" when there is no dessert in sight and what you really mean is "this will be easy for you to do." When you say "It's pouring cats and dogs," I see pets coming out of a pitcher. Please just tell me "It's raining very hard."
Idioms, puns, nuances, double entendres and sarcasm are lost on me.
5. Please be patient with my limited vocabulary. It's hard for me to tell you what I need when I don't know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.
Or, there's a flip side to this: I may sound like a "little professor" or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called "echolalia." I don't necessarily understand the context or the terminology I'm using. I just know that it gets me off the hook for coming u p with a reply.
6. Because language is so difficult for me, I am very visually oriented. Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.
A visual schedule is extremely helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, helps me manage my time and meet your expectations. Here's a great website for learning more about visual schedules: www.cesa7.k12.wi.us/sped/autism/structure/str11.htm.
Don't let autism cause you to lose sight of the whole child. Self-esteem is crucial.
7. Please focus and build on what I can do rather than what I can't do. Like any other human, I can't learn in an environment where I'm constantly made to feel that I'm not good enough and that I need "fixing." Trying anything new when I am almost sure to be met with criticism, however "constructive," becomes something to be avoided. Look for my strengths and you will find them. There is more than one "right" way to do most things.
8. Please help me with social interactions. It may look like I don't want to play with the other kids on the playground, but sometimes it's just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I'm delighted to be included.
9. Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, activities. A pattern may emerge.
10. If you are a family member, please love me unconditionally. Banish thoughts like, "If he would just.." and "Why can't she..." You did not fulfill every last expectation your parents had for you and you wouldn't like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you - I am worth it.
And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I'm not good at eye contact or conversation, but have you noticed that I don't lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won't be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.
They had autism too.
The answer to Alzheimer's, the enigma of extraterrestrial life -- what future achievements from today's children with autism, children like me, lie ahead?
All that I might become won't happen without you as my foundation. Think through some of those societal 'rules' and if they don't make sense for me, let them go. Be my advocate, be my friend, and we'll see just how far I can go.
If you enjoyed this article you'll love the new book "What Every Child With Autism Wishes You Knew." Look for it this Fall!
Tuesday, May 24, 2005
CHICAGO (CBS 2) Autism is being diagnosed in more children than ever these days, and that is what motivated thousands of people to walk in Chicago in the hope of finding a cure. Teams of people stormed Soldier Field Sunday morning for the annual Cure Autism Now walk.
The walk raises money to help fund research and education programs for families affected by autism.
Besides the main attraction, people were more than a little desperate to get a peek at a Chicago native who is everybody's favorite plumber. James Denton may be on that other network tonight, but having a nephew with autism, his priority was in Chicago today.
"The family certainly, like so many, is just trying to understand... Trying to turn this desperate housewives thing into something positive so this is definitely worth our time and effort,” Denton said.
After the walk, participants grooved to tunes by host and Grammy winner Chaka Khan.
The final tally is not in yet, but so far the event raised more than $650,000 for autism research.
Find out more at: CureAutismNow.org
CBS 2 Chicago WBBM-TV: Chicagoans Turn Out To Help Fight Autism
Thursday, May 05, 2005
TORONTO - Infants who make little eye contact, have trouble smiling and aren't very active may be showing signs of autism, Canadian researchers report in a small study that suggests autism could be spotted earlier than it is.
If autistic behavior can be spotted as early as 12 months, as the research indicates, it would enable doctors and parents to start effective therapy sooner.
Parents currently have to wait until a child is typically 2 to 3 years old to find out if the toddler has the mysterious developmental disability.
The study involved 150 infants who already were at high risk of developing autism based on family history. The researchers were from various Canadian hospitals and universities, including the Hospital for Sick Children in Toronto, York University and the University of Toronto.
Families with an autistic child have a 5 percent to 10 percent higher risk of having another child with the condition, a rate of recurrence about 50 times higher than the general population.
The research, published in the April-May edition of the International Journal of Developmental Neuroscience, was carried out for two years.
The team identified a list of common behavioral traits found in the 19 infants who actually went on to develop autism.
They found the infants had a lack of eye contact with parents, problems visually following an object and had trouble expressing themselves through facial expressions, such as smiling. They also had problems recognizing their names and lower activity levels than their healthy counterparts when they were as young as 6 months.
Dr. Wendy Roberts, a pediatrician at the Hospital for Sick Children and a team leader, said other pediatricians already were contacting her about possible early autism warnings among their own infant patients.
Roberts said there were few programs for potentially autistic children younger than 3, the age at which most cases are typically diagnosed.
"It puts pressure on the scientific community to come up with treatments for children under 3," she said.
Dr. Catherine Lord, an autism researcher at the University of Michigan, cautioned that while the study is promising, more research involving a larger number of infants needs to be done before doctors could make a firm diagnosis at such a young age. She said the Canadian research should only be used to consider potential risks of autism, and not firm diagnoses.
Roberts said that the 19 infants who had all the traits outlined in the study did go on to have autism, a complex developmental disorder best known for impairing a child's ability to communicate or interact with others.
Recent data suggest a tenfold increase in autism rates over the last decade, although it's unclear how much of the apparent surge reflects better diagnosis and how much is a true rise.
Roberts said infants in the study who had only some of the traits ended up in a "gray area."
"They may have autism or it could be a speech-language or other type of disorder," she said.
Study: Autism Treatment Could Be Earlier - Yahoo! News
Friday, April 29, 2005
"The sooner the diagnosis, the better outcome you are going to have," said Lewes pediatrician Dr. Jay Ludwicki.
He said parents should rely on children's well checks to diagnose symptoms, which generally present themselves by 15 and 18 months and as early as 12 months. Those symptoms can range depending on the degree of the neurological disorder, which affects the functioning of the brain.
Ludwicki, who's formerly of Pittsburgh and moved to the area in 1997, said autism is characterized by three main factors: the lack of social interaction skills, the lack of communication skills and the presence of repetitive activities, such as walking circles around a room and banging utensils.
He said there are several chromosomal defects that come together to show characteristics of autism. There are different types of impairment from mild, commonly diagnosed as Asperger's Syndrome, to severe.
"It is very diverse. That is probably the biggest problem," Ludwicki said.
He said he uses the Denver Developmental Screening for children at well checks, or routine visits when children are healthy.
One indicator would be "Is the child pointing, indicating things they want," he said. If several indicators show abnormal development, then he said, physicians can use more intense screenings designed to identify disorders.
"Not every kid is going to articulate real well at 15 to 18 months, but they will pick up nonverbal communication with parents and others around him," Ludwicki said, therefore absence of pointing may be a sign.
Other indicators may be not making eye contact, not showing reciprocal emotion and not being able to follow simple tasks like 'Throw this in the trash.'
"They don't play with toys. They line up toys. Later, they count toys. They don't make transitions easily from one activity to another," Ludwicki said, further explaining characteristics of the disorder.
He said his first step after determining a child is autistic is to refer the family to a pediatric neurologist and a pediatric psychologist. Some children with autism have co-morbidities, Ludwicki said, or other health problems such as anxiety disorder, depression, ADHD or obsessive compulsive disorder. Those problems can be treated with medication. For autism, there is no cure.
"My job is to get them to the neurologist and make sure they don't have other co-morbidities they could be treating," Ludwicki said.
He said more evidence points to genetic factors as causing autism and related disorders, classified as an autism spectrum, than environmental factors. He said vaccines are often blamed for causing autism, but studies have disproved that theory. (For information on that, visit the American Academy of Pediatrics Web site at www.aap.org.)
"It presents at that age" when vaccines are given, Ludwicki said, "so people always look back at a vaccine and say, 'It must have been the vaccine that caused it.'"
"It has a lot to do with brain disorganization," Ludwicki said.
He compared the development of an autistic child's brain to a tree that wasn't pruned. Research shows that autistic children lack the protein glutamate that prunes the brain, or organizes white matter.
Early diagnosis key to treating autism - Delaware Coast Press - delmarvanow.com
BALTIMORE, April 29 (UPI) --
They were born within four months of each other, Fritz V. in June of 1933 and Donald T. that September. Fritz was born in Austria, Donald in Mississippi, but they had a surprising amount in common.
When Donald was taken by his beleaguered parents to Johns Hopkins University in 1938, he acted like no 5-year-old that famed child psychiatrist Leo Kanner had ever seen.
"He learned my name," Kanner recounted decades later, "but he would never see me if he met me because he would never look up enough and had enough eye contact to recognize faces. ... Also, while he spoke, it was not for communication, and if in order to satisfy his needs some communication was needed, he would not be able to distinguish between 'I' and 'you,' rather echoing religiously some of the things that he was interested in.
"For instance, if he wanted his milk, he remembered constantly that his mother always asked him, 'Donnie, do you want your milk?' And his way of asking for milk was 'Donnie, do you want your milk?' Well, this was only a part of some of his peculiar behavior."
Yet, strangely, by age 2 1/2 he could name the presidents and vice presidents of the United States backwards and forwards and recite the 25 questions of the Presbyterian catechism.
Fritz made an equally vivid impression on Hans Asperger, the pediatrician who first saw him in 1939 at age 6 in Vienna. Asperger described him as "a highly unusual boy who shows a very severe impairment in social integration. ... His gaze was strikingly odd. It was generally directed into the void."
In school, "He quickly became aggressive and lashed out with anything he could get hold of (once with a hammer). ... Because of his totally uninhibited behavior, his schooling failed on the first day. ... Another strange phenomenon in this boy was the occurrence of certain stereotypic movements and habits."
As with Donald, "The content of his speech was completely different from what one would expect of a normal child," Asperger said of Fritz. "Only rarely was what he said in answer to a question."
Weird, but he started speaking at 10 months and soon "talked like an adult."
Donald T. and Fritz V. -- their last names were never given -- have endured in medical literature because they are firsts. Donald was the first to confront Kanner with the behaviors that he later named "autism." Fritz was the first case study of what came to be known as Asperger's Disorder. Both conditions are now classed in the official U.S. guide to mental problems as Pervasive Developmental Disorders, and are also called Autism Spectrum Disorders.
Autism derives from the Greek word for self, "autos," as in autobiography.
Most experts think the disorders are related, with autism the severe manifestation; Asperger's is sometimes referred to as "autism lite" or "a dash of autism" and is differentiated by a lack of delay in language development.
Kanner's study of Donald and 10 other children was titled "Autistic Disturbances of Affective Contact," and was published in the journal "Nervous Child" in 1943. Asperger called his study of Fritz and three other children "'Autistic Psychopathy' in Childhood;" it was published in the "Archiv fur Psychiatrie und Nervenkrankheiten" in 1944.
Kanner described autism's defining features as "extreme aloneness and a desire for the preservation of sameness."
"The children seemed to live in a static world in which they could not seem to tolerate any kind of change introduced by anybody but themselves," Kanner said in a 1972 speech, "and even that didn't occur very often."
"The autist is only himself," Asperger wrote, "and is not an active member of a greater organism which he is influenced by and which he influences constantly."
Kanner and Asperger did not collaborate on their studies. Nor did either predict the deluge that would follow: In the United States, a reasonable estimate is 30 or 40 children out of every 10,000 are diagnosed with autism, and another 30 or 40 are diagnosed with other Pervasive Developmental Disorders, including Asperger's.
This leads to a simple but significant question: Was it coincidence the first few cases of these strikingly similar disorders were identified at the same time, by the same term, in children born the same decade, by doctors thousands of miles apart?
Or, is it a clue to when and where autism started -- and why?
The question reflects a huge, and hugely important, debate. If autistic children always existed in the same percentages but just were not formally classified until the 1940s, that would suggest better diagnosis, not a troubling increase in the number of autistic children.
If, however, autism had a clear beginning in the fairly recent past (a past so recent that Fritz and Donald could both be alive today at age 71), then the issue is very different. That would suggest something new caused those first autism and Asperger's cases in the early 1930s; something caused them to increase, and something is still causing them today.
This ongoing series will look for answers by tracking the natural history of autism around the world -- a road less traveled than one might think. For example, Asperger's study was not translated into English until 1994 -- a half-century later -- and still is not easily available. Actually reading Asperger's account of Fritz V. makes you realize the severity of his disorder and its similarity to classical autism.
"The reader of Asperger's first paper cannot fail to be impressed by the close similarities to Kanner's case descriptions and the relatively few differences," wrote British psychiatrist Lorna Wing in the 1994 anthology "Autism and Asperger Syndrome," which includes the first English translation. Translator Uta Frith noted, "By a remarkable coincidence, Asperger and Kanner independently described exactly the same type of disturbed child to whom nobody had paid much attention before and both used the label autistic."
Both said autistic children were impossible to miss.
"Once one has properly diagnosed an autistic individual one can spot such children instantly," Asperger said.
"It is a unique syndrome," Kanner said, "and almost photographically not identical, but similar."
Kanner was clear he never saw an autistic child until he met Donald T. in 1938 -- 17 years after he got his medical degree in Berlin, on his way to becoming one of the world's leading psychiatrists, to whom the toughest cases were often referred "all the way to the great Hopkins," as he jokingly put it.
In fact, his landmark 1943 paper begins, "Since 1938, there have come to our attention a number of children whose condition differs so markedly and uniquely from anything reported so far, that each case merits -- and, I hope, will eventually receive -- a detailed consideration of its fascinating peculiarities."
Markedly, uniquely different: The great psychiatrist at the great Hopkins was convinced he was seeing something new.
Next, a look at the oldest of Kanner's patients, the one whose birth might mark the start of the age of autism. Her name was Virginia S.
This article is one of seven in a series UPI published earlier this year.
The Age of Autism aims to be interactive with readers and will take heed of comment, criticism and suggestions. E-mail: email@example.com
The Age of Autism: Donald T. and Fritz V.
Correspondent - Chicago Suburban News
The crowd at a local 2003 Little League All-Star baseball game was particularity excited about one player, a rookie who was leading the league in hits that year.
"What a sweet swing!"
"Who is that kid?"
"A rookie? I can't believe it! You're kidding!"
Those were the comments Rhonda Brunett heard about her son, Jordan, while walking through the crowd that summer day.
"It was like a miracle. They were talking about my child," she said.
Rhonda and Rick Brunett of Carol Stream never put limits on their son, Jordan, a sixth-grader at Jay Stream Elementary School in Carol Stream, but there was a time when he couldn't follow directions let alone play All-Star caliber baseball.
Jordan is autistic, a complex developmental disorder that affects social and communication skills. He was diagnosed at age 3.
To educate others about autism and the reality of raising an autistic child, Rhonda published "From Autism to All-Star" in the fall of 2004 by Specialty Publishing Co. in Carol Stream. The book includes observations and personal journal entries from Rhonda as well as excerpts from friends, family members, teachers and parents.
Rhonda actually began writing a journal while pregnant with Jordan, intending it to be a gift for him once he was older.
"I never intended to make my journal a book until I saw familiar tendencies in my friend's son and said, 'I can't let this happen, I have too much information, I have to get the word out,' " recalled Rhonda, stressing early intervention with autistic children is crucial.
Rhonda knew her journal had documented the warning signs and the efforts that helped Jordan assimilate into grade school, become socially interactive and a star baseball player.
"'From Autism to All-Star' is to be shared with parents and teachers to educate them, with (the) hope that my experience will give others hope and strength," Rhonda said.
For a new parent or someone who has not been around many children, not recognizing red flags is not understanding what you are seeing, Rhonda explained.
"Autistic children often develop normally through the first few years. Then they begin to display certain behaviors. It was confusing," said Rhonda.
For example, she would ask herself why Jordan could memorize all the presidents, but could not verbalize: "Mommy, I want a cookie."
Jordan played with toys differently. Instead of racing his toy cars on the ground, he would pass them before his eyes as if he were taking their picture. He also could be found running around the block 10 times or staring at a car tire for 40 minutes.
He paced endlessly, fixated on objects and showed repetitive movements. Jordan was "tirelessly repetitive," according to Carla Crosby, a friend of the Brunett's. Jordan couldn't communicate, which led to frustration which then led to tantrums.
"I don't know what is wrong and I don't know how to handle it," Rhonda wrote in her journal. She often felt very alone. "It's hard for the average person to understand what it's like to raise an autistic child," she wrote.
By 3 years old, Jordan was having problems if he was pulled from a routine. "A broken routine for Jordan made everyone who was involved in Jordan's day difficult, including Jordan," wrote his godfather Mike Muro in "From Autism to All-Star."
The Brunetts heard comments about his behavior from family members, but it was Crosby who suggested Rhonda take Jordan to a neurologist. Rhonda brought a video that showed Jordan's idiosyncrasies to the neurologist and Jordan was diagnosed with autism.
Rhonda knew almost nothing about autism, only what she had seen in the 1988 movie, "Rain Man," and what she read in two nonfiction books on the subject.
Rhonda instinctively did some things right, such as the constant use of flash cards. But she also took the advise of others. "I did whatever anyone suggested: the doctors, the teachers, friends," she said.
Neurologist Charles Swisser of Children's Memorial Hospital in Chicago told the Brunetts by third grade Jordan would lose most of the outward signs of autism. "Keep the Kool-Aid jug full," Swisser told them, referring to the many children who wanted to hang out with Jordan.
Even if Jordan wanted to play alone, he needed to be with children. Autistic children will mimic other children, so they will learn by having playmates around them.
Rhonda took Swisser's advice and surrounded Jordan with playmates.
"We were blessed with a wonderful neighborhood family of children who loved Jordan and treated him like another brother," said Rhonda.
Autistic children need consistency, much attention and socialization. Jordan had to be taught social skills, how to share toys and play with other children. Rhonda explained they had to take the toy away from Jordan and deal with the tears or tantrums and try again until he learned he had to share. Absolutely everything is a process, she added.
Autistic children also need encouragement and positive feedback. They are sensitive to loud sounds, so yelling at them does not help, said Rhonda.
One of Rhonda's goals for her son was to teach him compassion, which she showed him first-hand. The way to teach respect is to give it, she said.
Rhonda was not afraid to write she was tired or frustrated in her personal memoir. One particular breakdown she had convinced her that Jordan's school needed to provide him with a full-time aid.
On Jordan's first day of school in the Individual Evaluation Program in Community Consolidated School District 93, Rhonda could not get her son dressed. He would not cooperate and Rhonda found herself outside crying. A neighbor ended up getting Jordan ready for school.
"I thought I was a terrible mother. I couldn't control my kid," Rhonda said.
"It was maybe this state of mind dealing with Jordan and his difficulties that made me demand a full-time aid for my son," Rhonda wrote in her book.
One in 50 families daily will have a child diagnosed with autism, and Joan Huchthausen, assistant superintendent of District 89, confirmed teachers are seeing an increase in children with autistic tendencies and Asperger's disease, a mild form of autism. Huchthausen stressed parents are the first and life-long teachers, and schools cannot do everything.
Rhonda said it is important the teachers know the autistic child's positive characteristics and set the tone to prevent classroom bullying. Autistic children process information slower than other children, which is why it is important for them to have an aid to keep them on track, she pointed out.
Rhonda developed a method she calls the triangle of constant communication with the classroom teacher, speech teacher and herself, so there is triple reinforcement to Jordan's learning.
To educate more teachers about autism, Rhonda, her friend Wendy Williams, who has a child with Asperger's, and teachers from District 93, created a PowerPoint presentation, to help teachers recognize the red flags and develop appropriate teaching strategies and suggestions for the classroom.
While transferring her journal to manuscript, memories of Rhonda's own unpleasant school experiences started to surface, which motivated her to make a difference.
"I had a hard time understanding concepts. I couldn't focus. I would space out. I barely made it through school. I just struggled through school," she said.
Rhonda suspects she had attention deficit disorder long before it was recognized. "I was pushed through the system. I didn't learn a lot. I said, 'I'm not going to let that happen to my kid.' I wanted Jordan to enjoy school," Rhonda said.
Where are they now?
Rhonda said teaching or helping other children is something she is thinking about for the future. She has already given presentations at Roosevelt University in Chicago, to special education teaching students, and in the future she will target regular classroom teachers.
Jordan continues to learn. Rhonda and his speech teacher are working to expand his conversational level by having Jordan discuss newspaper articles.
Learning is still hard work. Now after an intense day at school where he needs all of his energy to focus on learning, Jordan will play ball to relax.
"We tried to let Jordan be Jordan, never wanted to change him but bring him to a position where he could interact socially," his dad, Rick, added.
For information about "From Autism to All-Star," autism information or support groups, visit www.autism2allstar.com.
Thursday, March 17, 2005
Publish Date : 3/16/2005 2:47:00 AM Source : Health Section ExpressNewsline.com
Diagnosis of Asperger’s Syndrome is made in terms of one or both of two main sets of diagnostic criteria: the DSM-IV criteria, and Gillberg’s criteria (published by Swedish psychiatrist Christopher Gillberg).
THE DSM-IV DIAGNOSTIC CRITERIA FOR ASPERGER’S SYNDROME
(A) Qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
4. lack of social or emotional reciprocity.
(B) Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, non-functional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects
(C) The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
(D) There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years)
(E) There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
(F) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
GILLBERG’S CRITERIA FOR ASPERGER’S SYNDROME
1. Severe impairment in reciprocal social interaction
(at least two of the following)
(a) inability to interact with peers
(b) lack of desire to interact with peers
(c) lack of appreciation of social cues
(d) socially and emotionally inappropriate behavior
2. All-absorbing narrow interest
(at least one of the following)
(a) exclusion of other activities
(b) repetitive adherence
(c) more rote than meaning
3. Imposition of routines and interests
(at least one of the following)
(a) on self, in aspects of life
(b) on others
4. Speech and language problems
(at least three of the following)
(a) delayed development
(b) superficially perfect expressive language
(c) formal, pedantic language
(d) odd prosody, peculiar voice characteristics
(e) impairment of comprehension including misinterpretations of literal/implied meanings
5. Non-verbal communication problems
(at least one of the following)
(a) limited use of gestures
(b) clumsy/gauche body language
(c) limited facial expression
(d) inappropriate expression
(e) peculiar, stiff gaze
6. Motor clumsiness: poor performance on neurodevelopmental examination
(All six criteria must be met for confirmation of diagnosis.)
There is no specific treatment or cure for any of the PDDs, including Asperger’s Syndrome. However, early diagnosis is essential, for the earlier intervention is initiated, the more promising the outcome. Treatment is individualized, based on specific symptoms and rehabilitative requirements. Appropriate educational programs will emphasize improving communication skills and social interaction, enhancing academic development, modifying maladaptive behaviors, encouraging adaptive behaviors, improving physical coordination, and developing daily living skills.
Social skills are more effectively developed through interaction with normal peers, who then can also serve as models of appropriate behavior and use of language. But the educational environment must also be structured and consistent, and information should be presented visually as well as verbally. In order to help the child with Asperger’s to generalize behaviors and skills learned at school, they need also to be reinforced at home. Thus parental involvement is absolutely essential to an integrated developmental program for an Asperger's child.
Intervention may also require medication, including psychostimulants, tricyclic antidepressants, and beta-blockers. As the individual with Asperger’s enters adulthood, he or she may also need specialized adult support services in order to locate and maintain employment and living arrangements.
This is not to suggest that there is any cognitive impairment in the Asperger’s individual. On the contrary, those with Asperger’s have no clinically significant delay in language development or in cognitive abilities. Many with Asperger’s are of average intelligence, but many are actually highly gifted and even brilliant. People with Asperger’s often obtain one or more college degrees, and they may become mathematicians, philosophers, scientists, university professors, etc. But adult functioning usually requires some degree of communication skill and social adaptability, and these are notably lacking in Asperger’s Syndrome, which is why adult support services are often helpful or even necessary.
What else is often lacking is comprehension of the nonliteral aspects of language, especially spoken language. Just as they miss nonverbal signals when interacting with others, people with Asperger’s usually are stymied by humor, irony, metaphor, or any other use of language that goes beyond literal meaning. This makes normal interaction with coworkers or acquaintances difficult.
Of all the pervasive developmental disorders, Asperger’s Syndrome has the most positive prognosis, and children with Asperger’s more often than not become independently functioning adults. However, their social impairments often lead to psychological difficulties, including poor self-image and depression, and as adults their social interactions will continue to be marked by typical Asperger’s disturbances, though usually in more subtle form if intervention has been initiated early and successfully.
Understanding Asperger�s Syndrome : Health Section ExpressNewsline.com- ExpressNewsline.com