Tuesday, March 31, 2009

Judge upholds Alex Barton teacher's suspension, loss of tenure


By Colleen Wixon

ST. LUCIE COUNTY — The teacher who orchestrated a vote to oust 5-year-old Alex Barton from his kindergarten classroom lost her appeal for reinstatement.

Administrative law judge Claude Arrington upheld the St. Lucie School Board’s decision to suspend Wendy Portillo for a year without pay and remove her tenure.

Schools Superintendent Michael Lannon, who testified at the hearing that he would not recommend she be allowed to teach in a district elementary school, said he had not yet read through the order and declined to comment.

Portillo’s attorney, David Walker of Stuart, also said he had no comment at this time.

The school district proved Portillo violated the state’s code of ethics for teachers and school board rules in the May 21 incident, in which she asked students to say whether Alex should be in the classroom while she tallied the votes on a board, Arrington said in his order.

The judge also sided with the district’s assertion that Portillo exposed Alex and the other students to "unnecessary embarrassment or disparagement" and used an inappropriate method of discipline, Arrington said in his order. She also failed to exercise the best professional judgment and failed to make a reasonable effort to protect Alex from harassment, he said.

Arrington said in his order that, except for last year’s incident, Portillo was a dedicated and excellent teacher over her 12-year career in St. Lucie County. Many of Morningside’s teachers and parents support her and her reputation remains intact despite the negative publicity of the voting incident, the judge wrote in the order.

"There can be little doubt that (Portillo) has been traumatized by the negative reactions to her misconduct. (Portillo) and her family have suffered economically as a result of her suspension," Arrington wrote in the order.

Wendy Portillo testifies in hearing (video): http://www.tcpalm.com/videos/detail/...ifies-hearing/

Wendy Portillo describes "vote-out" incident (video): http://www.tcpalm.com/videos/detail/...-out-incident/

Source: http://www.tcpalm.com/news/2009/mar/...spension-loss/

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Growing up with Asperger’s: 10-year-old adapting to his world


By Erin Pustay - GateHouse News Service

Inside and out, Brandon’s world looks and feels different.

Whimsy doesn’t exist. It’s just facts, figures, rules and structure. Little things get to him: Changes in temperature, the sensation of the silverware on his tongue, the sounds of the furnace kicking on.

Many of the things that we barely notice, 10-year-old Perry Township resident Brandon Wise hears, feels and sees with incredible clarity.

His world is exactly like ours, except that he is more attuned to it, more engaged in it. His mind is always working – he can’t turn it off – even at night when he pulls the covers up over his head and tries to sleep.

“Everything is literally different for Brandon,” said his mother, Melissa Wise. “He perceives the world differently. Some of the things he talks about and does are different. He is eccentric.”

Eccentric is only part of the diagnosis. Brandon lives every day with Asperger’s syndrome – a form of autism.

Like Brandon, the syndrome is unique. Autism, though still highly misunderstood, is slowly being better defined through studies and research, according to Dr. Mike McCabe, a pediatrician with Aultman Hospital.

What has been discovered is that no form of autism is ever the same. Children and adults who live with autism vary in their abilities to function on sociological levels.

Asperger’s is considered “high-functioning” autism.

“When people think of autism they picture kids flapping their hands or rocking in the corner of the room,” McCabe said. “Asperger’s is a form of autism because it is a developmental disorder, but it separates itself because the amount of developmental delays or problems are less.”

In other words, McCabe said, children who are diagnosed with Asperger’s will grow and develop and communicate in ways that are only subtly different than other children their age. Asperger’s children are simply more socially awkward.

With age, those traits that make them more socially awkward – traits that have them breaking social paradigms and norms every day – will stand out more and more.

“They are not developmentally aware of the social norms,” McCabe said. “They have a desire – they want to be social – but they don’t always understand how to (act in social situations).”

For Brandon, those actions are subtle: Blurting out the answer without raising his hand. Interrupting a conversation to offer his input. Not making eye contact when talking with someone. Focusing on his hand-held video game system instead of talking with friends on the bus or before wrestling practice.

Dr. Melanie Mirande, a family practitioner in North Canton, is the Wise family’s doctor. She’s seen Brandon for regular checkups since he was a tot and has gotten to know all about those things that make him unique and “different.”

“He calls ’em like he sees ’em,” Mirande said. “Don’cha my man?”

Brandon nods.

In his world, there is no mincing words. He’ll tell you exactly what he thinks, even if it may be considered rude.

“Kids think he is weird … but they have gotten used to him,” Melissa said. “They know how to handle him and how to help him handle stuff so he doesn’t have a meltdown.”

That’s the other thing: The “meltdowns.” Brandon lives by rules, structure and routine. Straying from that routine, even in the slightest sense, throws his entire world off kilter.

“If people played a game incorrectly, he had a meltdown. We were at a friend’s house one night, and he spent 45 minutes reading the directions to the game,” Melissa recalled. “You know kids, they just wanted to play and they did. They made up their own rules. He took the game and walked out because they weren’t playing it correctly and that upset him.”

In time, though, with patience, guidance and therapy, Brandon has been able to better adapt to his world. That doesn’t mean that he isn’t still talking out of turn, offering his opinion, not making eye contact or having a meltdown when his routine is upset. It just means that he is slowly making progress.

And that isn’t easy for anyone. Especially a kid.

“Growing up,” Mirande said, “is hard enough without the added stigma of your problem.”

But Brandon is doing well in school and making friends and learning how to interact with others because he has a strong support system around him, she said.

“He does well because of Mom and Dad. They have him plugged in,” Mirande said. “He has a great family. Nobody treats him any differently and I think that’s the key.

“I wish I could lie to you. I wish I could sit here and tell you that medicine could solve all his problems or has answers to all of his questions,” Mirande said. “When you live with Asperger’s, it’s about getting through every day. Family and friends are key. … He’s got two fantastic parents who love him and support him and that is most important.”

Did Einstein have Asperger's?

Although there is no hard evidence to prove the diagnosis, some famous names have been connected to autism and Asperger’s syndrome.

Professor Michael Fitzgerald, of Trinity College in Dublin, Ireland, published a book in 2004 titled “Autism and Creativity.” Through it he examines some of the world’s most-beloved historical figures who may also have shown signs of autism and/or Asperger’s Syndrome. Some of those historical figures include Socrates, Charles Darwin, Andy Warhol, Isaac Newton, Albert Einstein, Lewis Carroll and W.B. Yeats.

'A dash of autism'

Asperger’s syndrome was discovered by pediatrician Hans Asperger in the 1940s. The syndrome was discovered as Asperger studied the awkward social behavior of boys who were otherwise “normal” in their development. Since that time, children with the syndrome have been described as having “a dash of autism.” Although the syndrome was discovered in the 1940s. it was not officially recognized as a disorder until 1994.

Symptoms of Asperger's

Asperger’s syndrome, a form of high-functioning autism, manifests itself in a number of ways in both children and adults. Symptoms of the syndrome include:

- Lacks a natural ability to pick up on social cues. Children with Asperger’s may not be able to read body language, start or maintain a conversation or may not understand how to take turns in a conversation.

- Routines mean everything. Changes to routines are not easily handled by the child.

- The child may appear to lack empathy.

- Changes in tone, speech, pitch or accent are not easily recognized. Children with Asperger’s may not understand sarcasm or emotion because the changes in speech are unrecognizable.

- The speaking style of the child may seem advanced for his or her age.

- Avoids eye contact or stares at others.

- Few things may become obsessions for the child. He or she may become extremely knowledgeable about a certain topic or item.

- Conversation is important to the child, but the conversations are one-sided. The child will engage in long-winded talks, usually about a single, favorite – but narrow – topic such as snakes, baseball statistics or weather patterns. Often, Asperger’s children verbalize internal thoughts, even if doing so may be considered “rude.”

- Delayed motor development is common. Children with Asperger’s have low muscle tone and often have trouble with simple tasks such as catching a ball, picking up a fork or even walking.

- Extreme sensitivity to noises, sounds and touch is common.

The Independent

Source: http://www.norwichbulletin.com/lifes...g-to-his-world

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Video helps officers better understand autism


By Amanda Butterfield

SALT LAKE CITY -- A new video has just come out that every Salt Lake City police officer must watch. It's about autism.

Video Courtesy of KSL.com



According to the Autism Society of America, autism is the fastest growing developmental disability, affecting up to 1.5 million Americans. Those are facts the Salt Lake City Police Department could not ignore, so it co-produced a video to show its officers how to properly deal with someone with autism.

The video starts out with a scenario that was in the news just two weeks ago. A 20-year-old autistic man wandered from his home and was missing for the second time. The first time Justin Bailey went missing was last summer for three days. Bailey has the mental capacity of a 7-year-old.

It's cases like this that the Salt Lake City Police Department wants its officers to be ready for, and that's why it released a new public service announcement, in partnership with SaharaCares, about autism that is required for all to watch.

In the video, a doctor tells the viewer, "Autism is a developmental disorder that affects an individual's ability to communicate and interact."

Salt Lake City police Detective Dennis McGowan said, "Because of the prevalence of autism in the community, it's important for officers to recognize the signs of autism and not otherwise mistake those signs for aggression and non-compliance."

McGowan has watched the 25-minute video and says he's learned a lot about how to recognize an autistic individual. He said, "They sometimes don't establish eye contact. They look away. They can get scared, nervous, run away. Do you have a phone number? Have phone number, repetitive behavior or saying repeating things."

The video goes through several scenarios involving autistic individuals, young and old, explaining how to best deal with the situation.

But that's not all this video has taught Detective McGowan. He said the video taught him, "perhaps to be a little more sensitive and recognize the signs more quickly."

The video wasn't just made for law enforcement. You too can learn about autism. For more information, CLICK HERE.

Source: http://www.ksl.com/?nid=148&sid=6011576

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Monday, March 30, 2009

Autism teacher celebrates every gain


By Judy Fortin
CNN Medical Correspondent



ATLANTA, Georgia (CNN) -- A group of seven preschoolers gathered at a small table in the center of a brightly lit classroom and started playing with plastic blocks.

Their teacher, 27-year-old Stefanie Waldrop, sat in the middle of the group. She periodically asked the students what they were making. Some were unable to speak, others were squirming in their tiny chairs; several interrupted the playtime to use the bathroom.

The children, ages 2 to 5, have one thing in common: They all have autism.

"We come in here in the morning not knowing what the day's going to hold," said Waldrop, who teaches at the Marcus Autism Center in Atlanta. "We have to be really flexible about the stuff we do in the classroom."

Waldrop, who's been on the job for five years, is one of three certified special education teachers in the Center's Early Intervention Program.

Along with a group of assistants, the teachers spend the seven-hour school day moving from classroom to playroom to playground with 22 students who fall somewhere along the autism spectrum.

The American Academy of Pediatrics describes the autism spectrum as "a group of brain-based disorders that affect a child's behavior, social and communication skills."

The students at the Marcus Center are grouped not by age, but by their level of function. Waldrop is paired with children who have never received educational intervention before and have no readiness skills to transition to a public school. VideoWatch more on teaching children with autism »

In addition to helping the students learn to communicate, it's Waldrop's job to teach some of the basics, such as "going to the bathroom, washing hands...putting on their own socks and shoes, sitting in a chair without jumping up, and making eye contact." iReport.com: Have attitudes changed towards autism? Tell us about your experience

The job can be physically and emotionally demanding with a high burnout rate, according to Dr. Catherine Trapani, director of the education program at the Marcus Autism Center.

Waldrop used to work with older children who were profoundly and cognitively disabled, some of whom had serious aggression and behavior problems, Trapani said. "Stefanie was hurt. She was beaten up in the process of delivering her lessons and still came to work," said Trapani.

It helps that Waldrop loves children, but the right teacher for this job also has to be "reflective, outgoing, serious and silly," Trapani said.

"When you have to do the same thing 5,000 times and you're still not getting the response that you're looking for, if you can't see the humor in that or if you can't have a lighthearted moment, then you're going to be a very unhappy person," she said.

Waldrop admitted there are times when she gets frustrated. "There are lots of days that are very stressful and some days we come in first thing in the morning and we're not quite sure how we're going to make it to 3 o'clock," she said. Visit CNNhealth.com, your connection for better living

It helps to have three assistants in the classroom. "We play off of each other and can tell when someone is starting to get stressed out," she said. At that point, Waldrop said, it is time to take a break outside the classroom.

Waldrop doesn't use a lesson plan; rather, the work is organized in units. This month she's trying to teach the alphabet.

Trapani asks all the teachers she employs to focus on achieving one primary goal: "To develop skills to get children out of this setting and into community-based settings."

Waldrop said she worries that, in general, the public doesn't set very high expectations for children with autism. "People don't expect the kids to be able to do certain things," she said. "But if you work with them, most of our kids do pretty much anything that you can put in front of them."

But, she conceded, even conquering the basic milestones can take time. "When our kids learn how to do things that most people think are really easy -- like washing your hands -- that's exciting," Waldrop said. "It might take months for them to get it, but when they finally do, it is really exciting."

"We have kids who come in that are not able to talk at all and now can hold simple conversations," she said. "Knowing that you'll get there eventually is really gratifying."

Source: http://www.cnn.com/2009/HEALTH/03/30/hm.autism.teacher/

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Autistic boy's arrest at school fuels debate on discipline for disabled


By Christina E. Sanchez
THE TENNESSEAN

PORTLAND — Cindy Gaspard knew something was different about her son, Dylan, when he was 6 months old.

As an infant, he would line up toys in a row and throw a fit if the order was disrupted. He didn't like to be held. He couldn't speak until he was 3.

Dylan was diagnosed at age 7 with autism, a brain disorder that affects communication and social interaction. For Gaspard, the finding explained years of communication problems and outbursts, and helped her learn how to deal with many of his behaviors and to fight for services for her son.

She is fighting for him again.

Dylan, a sixth-grader enrolled in a special-needs program in Sumner County schools, was recently handcuffed, arrested and put in juvenile detention after an outburst in school. He was charged with two counts of assault for biting and scratching teachers.

"I disagree with court or jail as a placement for a mentally challenged child, when what he clearly needs is psychiatric treatment," Gaspard said of her 12-year-old son. "For Dylan, sitting in jail meant nothing to him. Treatment and assistance at a hospital will help him attain the skills he needs."

The case reflects an ongoing debate in Tennessee: How should school officials handle and defuse behavioral outbursts of developmentally disabled students at school?

Federal law prevents school officials from discussing students' cases, said district spokesman Jeremy Johnson.

But he said school district policy is that police will be called for children under certain circumstances, including when the child leaves school grounds, when the child's behavior cannot be controlled by teachers, and when a crime is committed.

"When a child is admitted to the therapeutic intervention program, parents are notified that we could have to call police," Johnson said.

Dylan, who has been in the hospital for a psychological evaluation since the episode on March 9, is not the first child with developmental disabilities to be arrested.

"Statewide, we have had several cases of children with disabilities being arrested and being taken to Juvenile Court for behaviors in school," said Sherry Wilds, staff attorney for the Tennessee Disability Law and Advocacy Center. "It's the answer a lot of systems have."

Seclusion boxes gone

Gaspard spoke out for her son in 2007 about seclusion boxes — small, dark rooms made of plywood where special-needs children were put to control behavior in Sumner County schools. She found out Dylan was put in one and helped bring their existence to public attention. The district has since removed the boxes.

A state law went into effect in January that is designed to prevent students from being subjected to unreasonable, unsafe or unwarranted discipline by prohibiting methods that include sitting on students as a restraint or putting them in a locked room. The Tennessee Board of Education will hold a public hearing April 30 on the rules for the restraint and isolation statute. April is also Autism Awareness Month.

Gaspard said Dylan had just been enrolled in the program at R.T. Fisher Alternative School in Gallatin a week before his arrest. He was placed there to better serve his educational needs.

But new situations and changes to routine can trigger his explosions, and school officials were aware of that because it is in his education plan. Methods that work best for him are taking him out of the situation or turning his attention to another activity, his mother said.

Boy had asthma attack

Gaspard said after her son was arrested she learned that Dylan was in the gym running laps, and he had an asthma attack. He was allowed to stop to use his inhaler. When the teacher tried to get him to start running again, Dylan got frustrated and ran out of the school, saying he was going to "get hit by a car."

She said teachers were able to get him back in the building, but when they were restraining him, he acted out further.

Police said Dylan bit one teacher and kicked and scratched two others.

"If the child is so out of control that the teachers can no longer handle him, we are going to have to respond," said Lt. Kate Novitsky, spokeswoman for the Gallatin Police Department. "If the child is biting, scratching and kicking, the child is going to have to be taken into custody."

Gaspard said restraining Dylan can backfire because, like many children with autism, he doesn't want to be touched. He banged his head against the table and had a bruise on his head the size of a golf ball.

Dylan was handcuffed, put in the police car and taken to juvenile detention. Police were not told he had autism.

Johnson, the Sumner County schools spokesman, said the district is not allowed under the Individuals with Disabilities Education Act to release that information to police, "even in an emergency."

Wilds, the Tennessee Disability Law and Advocacy Center attorney, disputes that contention, saying laws don't typically apply in an emergency.

"If you are getting ready to throw a child in the back of a car and take them away, you would want to know please handle this child carefully, they can't communicate that well," she said.

Arrest stuns advocates

Wilds said public and private lawyers are not always trained to handle these cases to fight for the child in courts. A behavioral analysis should be done on many of these children before police or court become involved.

"That way you can have a behavior intervention program in place when something happens," she said.

Holly Lu Conant Rees, chairman of the Disability Coalition on Education, said she has a lot of questions about the episode, including what plans were in place to help Dylan before the situation escalated. She does not believe arresting him was the answer.

"I believe it's unconscionable to arrest a 12-year-old child for behaviors that were clearly manifestations of the child's disability," said Conant Rees, who advocates for children of disabilities.

As for Gaspard, she is trying to figure out what the next step for Dylan will be and how to help him.

"Dylan is a very loving, funny child, and people are drawn to him and his big smile," Gaspard said. "He is the light of my life, and it's hard when you feel you are always butting heads with someone to get your child help."

Source: http://www.tennessean.com/article/20...70/1006/NEWS01

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Cartoons 'could help spot autism'


By BBC News

Watching how a toddler responds to animations could help diagnose autism, research has suggested.

Babies usually start paying attention to movement soon after birth, and pick up information from the cues they see but children with autism often do not.

A study, published in Nature, where two-year-olds were shown manipulated animations found those with autism focussed on movement linked to sound.

UK experts said a test of this kind could help pick up autism early.

In the Yale study, researchers created five versions of animated children's games such as 'peek-a-boo' and 'pat-a-cake' where points of light marked movement, each with sound.

On the other half of the screen, the same animation was presented upside down and in reverse, but with the same audio as the upright version.

Previous studies have shown that, normally, children's attention is drawn to such changes from around eight months old.

Twenty-one toddlers with autistic-spectrum disorders (ASD), 39 who were developing normally and 16 who had developmental problems but did not have autism were studied.

Both the toddlers who were developing normally and those with developmental problems showed a clear preference for looking at the upright animations. However the toddlers with ASD showed no preference and looked backwards and forwards between the two halves of the screen.

But when the toddlers were shown the 'pat-a-cake' animation - where the figure repeatedly and audibly claps his hands - those with ASD showed a marked preference for the upright animation, where the sounds were in time with the movement, choosing it 66% of the time.

The other children continued to prefer the upright version.

'Grabbing their attention'

Dr Ami Klin, of the Yale Child Study Center, who worked on the research, said: "Our results suggest that, in autism, genetic predispositions are exacerbated by atypical experience from a very early age, altering brain development.

"Attention to biological motion is a fundamental mechanism of social engagement, and in the future, we need to understand how this process is derailed in autism, starting still earlier, in the first weeks and months of life."

Thomas Insel, director of the National Institute of Mental Health - which helped fund the study, said: "For the first time, this study has pinpointed what grabs the attention of toddlers with ASDs.

"In addition to potential uses in screening for early diagnosis, this line of research holds promise for development of new therapies based on redirecting visual attention in children with these disorders."

A spokeswoman for the National Autistic Society said: "This is a really interesting study which suggests that children are on a different learning pathway from other children from a very early age.

"We warmly welcome all research which helps us further our understanding of autism, and how best to help and support those with the condition."

Source: http://news.bbc.co.uk/2/hi/health/7966770.stm

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Sunday, March 29, 2009

Music Has Become a Part of Many Programs for Autistic Children

Proponents say music can be a creative outlet for higher-functioning students, for others it can reduce anxiety.


At the Kennedy Krieger School in Montgomery, Md., Austin Hall, right, plays with music therapist Leanne Belasco, on guitar.

By SUSAN BIDDLE | THE WASHINGTON POST


When it's bath time for Janna Simpson, her mother sometimes throws together a tune. "Take a bath, take a bath, take a bath," Judy Simpson might chant, luring her daughter into the water.

Janna isn't a toddler, and her mother isn't simply singing along. Janna is a 15 year old with autism, a speech impairment and a seizure disorder. Music, Judy Simpson says, has been key to getting her to engage in such everyday activities as taking a bath; it's also an alternative to verbal instructions in helping her overcome social and behavioral problems.

Janna, who never developed normal speech, receives formal music therapy at West Virginia's Hedgesville Middle School, where she is enrolled in a classroom for students with autism. Her mother, a former music therapist who is director of government relations at the American Music Therapy Association, based in Silver Spring, Md., continues with that therapeutic approach at home.

"Latitude, longitude, looking through a microscope: Such skills are not important," Simpson explains. "She needs basic skills to live, such as brushing her teeth, taking a bath, the pragmatics of engaging with people. This is a difficult thing to teach."

Simpson's confidence in music therapy is based on her own experience and that of other parents of children with autism who are eager to find ways to increase their children's ability to function.

But exactly how and to what extent music therapy works is not well understood. Just over a year ago, a session titled "The Autism Agenda" at the American Music Therapy Association conference stressed the need for more research and for practice to be based on evidence.

Despite the limited data about its effectiveness, making music has become an integral part of many programs for children with autism. Leanne Belasco, a music therapist at the Kennedy Krieger School's Montgomery County, Md., campus, says music gives structure and a predictable rhythm to verbal directions. When Belasco strums her autoharp to her students, she sings encouraging, instructive lyrics such as, "I know I have what it takes; I am a good listener" and "Be flexible."

At the school, where all 37 full-time students are enrolled in music therapy, Belasco begins her 30- to 45-minute sessions by singing a refrain: "Hello, everybody, it's time for music today."

She wheels around the group seated in a horseshoe formation, addressing each student in song as she does so.

A 16 year old, who regularly wears headphones in class because of his auditory sensitivities, responds with apparent enjoyment, as does a younger boy, who strums the autoharp with seeming pleasure as he rocks back and forth in his chair.

Despite the benefits associated with music, there are special challenges for children with autism.

"Some students are sensitive to sirens and vacuums; some are sensitive to music, to specific instruments or the frequency of the instrument," says Linda Brandenburg, director of school autism services at Kennedy Krieger, which is based in Baltimore. The music therapist gradually eases students with such auditory sensitivities into the group.

For higher-functioning students on the autism spectrum, music can be a creative outlet in addition to helping regulate behavior, therapists say.

At Frost School in Rockville, Md., for children with emotional disorders including those on the autism spectrum, ninth-grader Donny Toker has enjoyed music from a young age and now composes jazz and rock pieces, which he has performed at family gatherings and at school.

His mother, Nancy Toker, says music helps him focus and relieves anxiety and frustration.

"When he is in a musical environment, he is able to interact with his peers, and his conversational skills are appropriate, " Toker says.

Catherine Lord, a professor of psychology at the University of Michigan specializing in autism research, says, "We know that music therapy treatment is associated with improvement, but we don't know what the cause of that improvement is."

Studies suggesting positive results for music therapy, she says, typically "don't control for what you need to control to find out what causes the change."

Students may improve because of factors such as the therapist's enthusiasm and attention rather than the music itself.

Lord notes that she would support the use of music therapy only if it could be shown that it helped to decrease problem behaviors and also if it was clearly determined that students with autism enjoyed the therapy.

Many people with autism lack forms of entertainment and relaxation, so providing effective behavioral treatment that is also pleasurable would be worthwhile, she says.

Source: http://www.theledger.com/article/200...istic-Children

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A Regular Guy Growing Up With Autism - Book -



Every parent has dreams for their children, but when autism strikes, those dreams seem out of reach. Read Laura Shumaker inspiring story of raising her autistic son from a baby to young adulthood- The challenges, the rewards, the heartaches and the joy. Autism affects 1 in 150 children. You are not alone. Learn more about growing up with autism at http://www.laurashumaker.com



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Autism, Love, and Revolution


by Amanda Copeland

Welcome to the journey of autism: the journey of my life as a mother, as a filmmaker. I once had a daughter who was perfectly formed, with a smoothly functioning nervous and immune system, and then autism became my life's journey. Autism, love, and now, revolution.

Lila was born in January of 2002, 11 pounds of beautiful bouncing baby. Somehow my doctors didn't realize how enormous she was while she was still in my belly, and I pushed for several futile hours before she was taken out by emergency c-section. She had a bubbly hematoma on her crown from the pushing, but her APGARS all rode high and she ate like a prize fighter despite what the nurses laughingly called my "white girl nipples". That first night in the hospital there was a full moon flooding our tiny room with brilliant sparkling light. I watched my baby sleeping peacefully on my chest and ignored the nurse's urgings to lay her down in the crib.

I was in awe. When my daughter let out her first cry in that operating room I experienced a spontaneous healing from every perceived let-down I had known from my parents. I realized in the passing of a moment who they had both been, and what limited tools they had possessed to do this mind-bogglingly important job of raising a child. From the moment she was conceived my daughter held supernatural powers of this type. She made love and forgiveness happen spontaneously. The miraculous was all around us.

When Lila was 4 months old and turning over on her belly, eyes alert, we moved into a darling little craftsman cottage in east Culver City. It had been built and painted in 1926. We and our two devoted dogs were pleased to settle in there and I set up my photography studio across the street at the Helms Bakery. As a single mother I worked 16 hours a day, but we made it, and I was simply besmirched with a love I had never known for this enchanting, gorgeous little girl who had blessed me with her coming.

At a year, Lila walked. Within a month she started speaking in both English and Spanish, the latter being the primary language I spoke to her from birth. Her body moved smoothly through space and she looked at faces and new experiences with wide curious eyes of love. Near the same time, she started to exhibit signs of a gastrointestinal disorder. Explosive and acidic diarrhea began to dominate our daily lives and her stomach distended like a famine victim's. The visit to the pediatrician revealed nothing. The rice and oats I was told to feed her did nothing to end the scourge of hot liquid running through her gut and ruining all her clothes, car seat, toys, whatever happened to be in the way.

At around 14-18 months Lila began a strange jumping and flapping that was almost endearing, and as it came on subtly, I took it as a developmental thing. Then, her words started disappearing. Again, gazing at her with rose colored lenses I assumed her unfoldment was taking its own twists and turns and I was too busy fretting over the intestinal mystery to go much further into investigating these quirky developments. Over and over again the pediatrician told me she was fine. At two and a half Lila joined in a local preschool program. At this moment, I realized something was awfully wrong with my child. The other toddlers screamed in agony when their parents dropped them off. Lila waddled to a corner and sifted sand. I would try to say goodbye to her, and she completely ignored me. I shared with other parents that I was concerned I'd formed no bond with my child.

On October 30, 2002 I had my first parent teacher conference at the preschool. I was wearing tiger-print dance pants and an oversized wool sweater, my hair up in a bun. I remember the dryness of my hands in the chill. The morning was cold and misty and the outline of the oak trees against the sunrise is still burned in my mind. Mine was the first meeting of the day. I walked into the school room and saw Lila's two teachers and the school's director arranged cross-legged on the floor with a box of tissue at the ready. I knew this could not bode well. The teachers looked at me gravely. I saw that one of them had a tear welling up her eye. Gently and shortly they told me they were not doctors but they had seen Lila's behaviors before in other toddlers who were soon diagnosed with autism. They likened my Lila to an older boy at the school who had pervasive autism, the son of a teacher I knew well. They advised me to see a developmental psychologist for a diagnosis. Autism.

This was the moment my life became the journey of autism -the moment my heart irrevocably broke. The instant when every hand flap, every spin, every liquid bowel movement, every lost word, snapped into sharp focus and I felt fully what had happened to my girl.

My mission now is to bring relief to the immense civil rights crisis at large in a world today beset with autism, in an epidemic that has steadily and sharply risen in numbers since its inception, and has never plateaued. As we journey on the road to prevention and liberal treatment of autism, in a battle to achieve unfettered access to treatment for every child born on the spectrum regardless of race, nationality or economic status, I journey with Lila. My daughter has undergone intensive bio-medical intervention over the past 5 years, and a battery of therapies that have monopolized thousands of hours of her young life. The work she has done has not been in vain.

The toxic house that provided the catastrophic load of lead that triggered Lila's autism also took the life of one of our dogs. For the hundreds of parents and grandparents along the way who have mortgaged their homes and given away jobs to undertake the struggle for their children's lives, we begin the journey of a million steps in a documentary film we are making, to make way for the tidal wave of children coming to us in autism. With "The Pilgrims: the journey to a new world for autism", we will explore the tragedies and triumphs of the journey thousands of families world-wide undertake when they learn of this devastating disorder visited on their children. This is where we meet revolution and entreat those who have an investment in their children to join us.

That morning in 2002 when the teachers set me on the road of autism and revolution, another miracle transpired. That word "autism", that irrevocable knowing that you are in possession of a child with untold difficulties ahead of them, brought my love for Lila to a place that transcends words and defies pedestrian knowing. This is the miracle of Lila, the biggest love that could ever be, the most gigantic love I can ever know.

Source: http://www.huffingtonpost.com/amanda..._b_180065.html

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The monster inside my son

For years I thought of his autism as beautiful and mysterious. But when he turned unspeakably violent, I had to question everything I knew.

by Ann Bauer

On Feb. 14 I awaken to this headline: "Professor Beaten to Death by Autistic Son."

I scan the story while standing, my coffee forgotten. Trudy Steuernagel, a faculty member in political science at Kent State, has been murdered and her 18-year-old son, Sky, has been arrested and charged with the crime, though he is profoundly disabled and can neither speak nor understand. Sky, who likes cartoons and chicken nuggets, apparently lost control and beat his mother into a coma. He was sitting in jail when she died.

This happens to be two days after my older son's 21st birthday, which we marked behind two sets of locked steel doors. I'm exhausted and hopeless and vaguely hung over because Andrew, who has autism, also has evolved from sweet, dreamy boy to something like a golem: bitter, rampaging, full of rage. It happened no matter how fiercely I loved him or how many therapies I employed.

Now, reading about this Ohio mother, there is a moment of slithering nausea and panic followed immediately by a sense of guilty relief.

I am not alone.

- - - - - - - - - - - -

Andrew started life as a mostly typical child. But at 3 and a half he become remote and perseverative, sitting in a corner and staring at his own splayed hand. Eventually he was diagnosed with high-functioning autism, a label that seemed to explain everything from his calendar memory and social isolation to his normal IQ.

We got him into a good program and there was a brief, halcyon phase of near normalcy -- a time I long for still so ardently that I feel hungry for it at a cellular level -- from ages 12 to 17. Andrew aced algebra, became fluent in Spanish, played the cello in the school orchestra, and competed on weekends in tournament chess. I occasionally even referred to him as "cured."

But in the months before turning 18, Andrew grew depressed and bitter. Huge and hairy -- a young man who grows a beard by twilight -- he suddenly became as withdrawn as he'd been at 4. Many of his old symptoms returned: the rocking and "stimming" (e.g., blinking rapidly at lights), the compulsion to empty bottles of liquid soap. Sometimes he would freeze, like a statue. Classic catatonia, the experts told us. We tried a series of medications, but that only made him worse.

Once during this phase, he beat me. A neighbor heard me screaming and called 911. But I blamed this on the drugs. Despite everything, my son had always been gentle and sweet. This was no twisted adolescent squirrel killer who kept a pile of carcasses under his bed.

On the day he should have graduated from high school, Andrew was instead being treated in a psychiatric ward at the Mayo Clinic. But he seemed to improve, and we were hopeful. Upon release, he was placed in a series of behavioral health centers and group homes. This is where his real education began.

He'd quit progressing in school, but now my son soaked up new information like a toddler learning to talk. Every placement in a succeedingly tougher environment gave him new skills. He shoplifted like a pro, traded his belongings for sexual favors, and dined and dashed so often some local restaurants had his picture posted in their kitchen under the words, "Don't serve this man." I told myself at least he was thinking, making his own bad choices, experiencing adult consequences. A part of me was even proud.

But he'd also quit reading, conversing, learning people's names, or keeping track of the day of the week. He ate like some gnashing beast: stuffing food into his mouth until his cheeks bulged and food dribbled out onto his clothes. And after moving to the rural group home selected by a judge because it was miles from restaurants or businesses where he could steal, Andrew morphed again, the warty monster from a Grimm fairy tale, demolishing everything in his path.

His destruction was utterly senseless yet brilliantly thorough: He submerged his computer, stereo and iPod in water; threw puzzle pieces and Styrofoam cups into the toilet and flushed them, plugging the pipes literally dozens of times a week; and urinated on every square inch of his room: bed, walls, floor, closet, everything but the ceiling and that only because he had not (yet, I suspect) figured out how.

When I asked him why he did these things he would say, eyes narrow like a night creature, "I don't like being caged."

- - - - - - - - - - - -

Then came Sept. 2, last fall. This was to be Andrew's first day of his final year in public school. He hated school -- a so-called transition program -- because it was demeaning. Lessons about how to cross streets and take buses and punch time clocks. My son had completed pre-calculus; now he was being taught how to make correct change.

But there was nowhere else for him. He'd failed to hold the two jobs my husband and I had found for him; the private job coach we hired said Andrew was the most challenging client he'd ever worked with -- right before he quit. We were financially tapped out and the state would not pay for vocational training until Andrew turned 21. Transition school was the only choice.

I'd explained all this. But when I showed up at the group home that morning, he was drinking coffee and pacing and still not dressed. I went into his room, took some clothes from the closet, handed them to him. And hinting at what he was about to do only with a small sigh, as if to say, "I've had enough," my son picked me up and threw me across the room.

I had three broken ribs and a bit of damage to my liver that made my doctor fret. Still, who among us hasn't wanted to toss our mother across the room when she's nattering on and making cheerful sounds in the morning? I dismissed it as an aberration until a couple weeks later when Andrew decked his elderly tutor, knocking her onto a concrete sidewalk and breaking her hand. He went on to attack several staff members at the group home, grope the mentally handicapped young women who attended his transition program, and finally to accost his 14-year-old sister right in front of my eyes.

It was Christmas Day. I watched him enter the room and fix his gaze on my daughter. Then he rushed her, and I screamed. My husband -- two inches shorter and 50 pounds lighter -- somehow intercepted Andrew and knocked him to the ground. After he had been escorted from our family dinner in restraints, we sat at a table heaped with food growing cold, where my elderly parents wept and my daughter shook silently. I comforted them all and after that was done -- the meal reheated and people eating -- I drank every drop of alcohol in sight, even draining the half-full wine glass my mother always left. The next morning, through a headache of steel knives and bad music, I got on the phone.

I called the man who was supposed to be my son's psychiatrist to ask for an emergency appointment. Andrew was becoming dangerous, I told the nurse, and he was going to hurt someone. But the doctor was too busy; he was on vacation. There might be an opening in late January. No one else was available, no matter how many numbers I dialed.

Secretly, as if committing a sacrilege, I searched online using keywords such as "autism" and "violence" and "murder." What I found was confusing. There were roughly a dozen recent articles about heinous acts committed by people with autism and Asperger's syndrome, but each was followed by editorials and letters written by autism advocates vigorously denying a link. There were a few studies from the '80s and '90s, but the results -- when they showed a higher rate of violent crime among people with autism -- appeared to have been quieted or dismissed.

On the other hand there were, literally, thousands of heartwarming stories about autism. A couple of the most widely read were written by me. For years I had been telling my son's story, insisting that autism is beautiful, mysterious, perhaps even evolutionarily necessary. Denying that it can also be a wild, ravaging madness, a disease of the mind and soul. It was my trademark as an essayist, but also my profound belief.

Now, despite the constant calling and late-night research, I could not accept what was happening. I could not write about it; I could not speak of it. Not even my closest friends knew what was happening inside my life.

- - - - - - - - - - - -

My husband and I were on our way to an inauguration party the night Andrew finally came apart.

It was January, a week of cold so wicked I was dressed in long underwear and wool sweaters, scarves, a parka, and two sets of gloves. It took me a long time to scramble through all the layers when my cellphone rang. But missing the call was not an option. I'd already had four panicked messages from the group home that day: Andrew's violence was escalating. They were mandated by state law to stay inside because of the weather, and he was going stir crazy, terrorizing the house. No one knew what to do.

"Yes?" I answered.

"I'm so sorry," is how the voice on the other end began.

It was Andrew's counselor, calling to describe the situation. My son was in an ambulance circling the Twin Cities, sedated and strapped down to a bed. He'd been in there for a couple of hours and the medics just kept driving; they couldn't stop because all the psych wards were full.

"Yes," I croaked again. Other than this one low word, I'd been struck mute.

They'd had no choice but to call the police, the counselor said. After dinner -- which was served in the group home at 5 o'clock, leaving long hours to kill before bed -- Andrew made a pass at a young female staff member. Petite, blond, around his age. The girl rebuffed him, reminding him probably for the 8,000th time that day about the "no touching" rule. And then he went off.

My son reportedly leapt on her -- his 260-pound body surprisingly nimble -- one hand around her throat, choking her, and the other in her mouth, pressing down, cutting off her air two different ways. It took four men to pull him off and by this time the girl had passed out.

"Is she all right?" I asked. And this mattered for so many reasons: There was the basic human one, then the legal, also the fact that my own fate hung on the answer. While lying awake earlier that week, I'd made the decision that if my own child were to kill someone I, too, would have to die.

"She's bruised," he said, "and scared."

That's when I breathed. Nothing irreversibly evil had yet been done.

My husband wanted to turn around. But I was afraid that in the quiet of our home I might sit and think about my perfect, rosy-cheeked baby and actually go insane. So instead we went to the party and, as on Christmas, I drank as if it were a task I need to accomplish. Steadily, with steel. While my husband watched over me with his worried face, I hugged people and talked and tried to participate in a game the host had devised: Obama trivia. What movie did he take Michelle to see on their first date? Which brand of computer does he use? How big are his feet?

I failed to answer a single question and wondered why everyone around me seemed to know these things. Where had I been? Through my shimmering stupor, I surveyed the crowd of happy, shining faces. People were wearing buttons, T-shirts, even necklaces that spelled out "hope." This struck me as sinister and somewhat rude. Hope was bullshit. Hope was exactly what had been lost.

In the car on the way home, I asked my husband if I had fooled everyone at the party. Was I speaking normally? Did I at any point shout or cry or whimper? He assured me I had not. But for the few moments at the end when I'd looked as if I might collapse, I'd been pale but appropriate.

"I'm sure I'm the only one who knew," he said, shifting so the seat made its cold, leather groan and taking my hand.

I thanked him and leaned back, thinking dumbly that, of course, there was one thing he didn't know: I'd been secretly stockpiling the sleeping pills my doctor prescribes like Pez. I had about 80 saved up, which would probably be enough. The ambulance was still out there, driving through the dark night on frosted roads, holding my son inside. For now I could live. But the following morning I recounted my supply, just in case.

- - - - - - - - - - - -

Back when Andrew was in junior high school, my mother had a friend whose adult son had only recently been diagnosed with autism. He'd been dysfunctional since childhood, failing at school, unable to make a friend or keep a decent job. At 35 he was still living at home, collecting carts at the local grocery store, and taking anticonvulsants (Tegretol was the unofficial treatment of that era for outbursts) to control the violent urges he'd been having for 15 years.

"You think he's better now," my mother's friend once said as we watched a young, laughing Andrew out the window, playing tag with his brother and sister in my parents' backyard. "But wait 'til he's older. Then you'll understand. "

I hated her and was furious that she wished for our downfall -- also that her dumb, psychopathic son had been given the same label as my beloved child. Autism had become oddly fashionable; my mother's friend was wealthy. Clearly she'd gone "diagnosis shopping." My son, I vowed, would be nothing like hers.

When Andrew finally landed at the county hospital, after 10 hours in the circling ambulance and another three in the E.R., I was still looking for a different answer. This wasn't autism. Surely he had a brain tumor, a seizure disorder, or a delusional condition such as schizophrenia. Maybe, on one of his crime sprees, he'd gotten ahold of some PCP.

But the psychiatrist assigned to my son said no. The MRI was clean; the EEG normal. The doctor's specialty happened to be schizophrenia, and he saw none of the signs. Street drugs would have left Andrew's body by now. This was isolation, frustration, hormonal surges, poor impulse control and hopelessness. It was adult autism, the psychiatrist told me: one awful direction it can take.

Monday, I went to see my son. He was in a bare white cell behind a steel door with a window, like Hannibal Lecter. The only thing missing was the mask. Two male nurses and Max, my 18-year-old linebacker son, walked with me into the room. Andrew was beached on a bed, his glasses the only thing on the shelf alongside. I touched his shoulder and woke him, taking his hands after he'd lifted himself to sit. "I'm here, sweetheart," I told him. "I want to help."

He looked at me with bug-eyed wonder and squeezed my hands, hard, "I might kill you," he said. That's when Max pushed his way between us and ordered me from the room. Sobbing, he wrestled his brother to the bed and held him there.

I spent Tuesday at a friend's house, as planned, in front of the TV, watching the Obamas walk and wave. Once, when someone asked why I was so quiet, I mentioned that one of my children was in the hospital, quite ill. She touched me and said something kind. I knew she was thinking of something like leukemia and I wanted to tell her I would hack off my right arm in return for something as simple as cancer. The flickering beauty of a sad, pure, too-early death sounds lovely. Instead I nodded, silent and dumb.

The one thing I held onto, through all of this, was the sudden appearance of this county psychiatrist: a small, bespectacled, Dustin Hoffman-ish fellow who’d spent years on a kibbutz before going to medical school in middle age. I found him magnetic, I trusted him. He became my talisman, my Obama, the only reason to hope. It wasn't that he had any magic solutions -- I've learned by now that no one does -- but he was openly upset, diagnosing Andrew simply as "someone in pain."

We sat in the doctor's lounge and he gave me a slice of banana bread to eat while he kneaded his forehead and read his notes. When he asked me what I wanted him to do, I told him: Whatever it takes to make my son stop. The threat of harm to my son's body was superseded by black stains on his soul. The doctor agreed, but he had made a list in ascending order of risk: Ativan, high-dose Prozac, Depakote, electroshock, Clozaril, Riluzole. A drug called Lupron.

I reached for my single semester of Latin. "Lupron? You want to take the werewolf out of him?"

"Exactly," said the Israeli. "But it's our last resort."

There were days spent in court, one swimming into the next, like a series of nightmares. Because my son was vulnerable, nothing could be done without a judge's order. Exhausted after this process, my husband and I went to Chicago and spent three days walking in icy sunlight, eating in no-name diners, going to sleep at 9 p.m. By the time we returned, Andrew had been given buckets full of dangerous, doping drugs and two sessions of ECT.

When we arrived at the hospital, he shuffled sleepily out of his now-unlocked room. We gave him money to order pizza (it turns out Domino's delivers to the psych ward), a sketchbook and pastels, two books. He could have nothing sharp, no cords. This ruled out a CD player, laptop, or ballpoint pen.

I asked tentatively if he remembered what he had done and suddenly he began to cry, tears running down his giant, furry face, jeweling his beard.

"Beware," he said through ragged breaths. "I'm bad now, I can feel it. I can't help the things I do."

- - - - - - - - - - - -

Whether there is a definitive link between autism and violence -- between Trudy Steuernagel's situation and mine -- I cannot say.

And even if it exists, the cause is not clear. Our adult son's behavior could be the outcome of living daily in a world where everything hurts and nothing makes sense. It could be the result (as some scientists have postulated) of excess testosterone on the autistic brain. It could simply be wild coincidence that I ran across this particular story during a time when I was looking for answers. Any of these is possible. I just don't know.

The chairman of Trudy Steuernagel's department rose at her memorial service to proclaim, "Autism doesn't equal violence." And this probably is mathematically correct: Autism does not always equal violence. But I do believe there may be a tragic, blameless relationship. Neither Sky nor Andrew means to be murderous -- of this I am sure -- but their circumstances, neurology, size and age combine to create the perfect storm.

It is warmer, finally. Outside my window ice is melting off skeletal trees. I sit in the pale morning light, drinking tepid coffee and reading about this woman whom I suspect I would have liked. A fellow academic and writer, Steuernagel, too, insisted on finding beauty in autism. Her legacy includes an editorial about Sky's loving nature and relevance, how he led her through life along "a trail of sparkles."

Mine, I decide, must be in part to break the silence about autism's darker side. We cannot solve this problem by hiding it, the way handicapped children themselves used to be tucked away in cellars. In order to help the young men who endure this rage, someone has to be willing to tell the truth.

So here it is.

Source:
http://www.salon.com/mwt/feature/200...ism/index.html

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Wednesday, March 25, 2009

Parents Defend Teacher Accused of Abusing Autistic Student


by Roger Weeder

JACKSONVILLE, FL -- A Kernan Trail Elementary teacher accused of abusing an autistic child in her classroom has parents speaking out in support of Rhona Silver.

Silver was arrested last week, charged with child abuse. Police say the 30-year classroom teacher restrained a child, with his pants down, for three consecutive school days in a Rifton Chair. The chair is a toilet chair with restraints.

Tanya Tsoutsos is one parent who voiced her support for Silver. She says her daughter was in Silver's class at Kernan Trail.

"She's a sweet lady," said Tsoutsos.

"She's good with kids, she loves the kids, kids love her. She's personable, she comes to kids' birthday parties and special events we have."

In police reports, a teacher's aid and a student teacher in Silver's classroom said they witnessed what they called abuse.

Silver was removed from the classroom last October. She remains employed by the district in a non-teaching position while the investigation continues.

Source: http://www.firstcoastnews.com/news/l...134551&catid=3

Previous news on the subject: http://www.helpcd.com/forum/showthread.php?t=451

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Tuesday, March 24, 2009

Amanda Peet v. Jenny McCarthy = vaccines v. autism?


By Lisa Jo Rudy
Autism & Parenting Examiner

Amanda Peet and Jenny McCarthy are beautiful women with lots of money, great bodies, and terrific makeup artists. They're also spokewomen for what have become opposing "teams" in the autism wars.

Peet, according to an article in the Momlogic blog is once again speaking out in favor of fully vaccinating children. Here's a quote from Ms. Peet - which, to be honest, really does sound an awful lot like fighting words:

"Also, I hope parents understand that when they do not vaccinate their kids, they are able to make that choice only because most of us are vaccinating," says Peet. "We are creating a barricade around their un-vaccinated children and that is what keeps them safe. That's a fact."

Meanwhile, Jenny McCarthy has come out with yet a third book on vaccines and autism. This one, called Healing and Preventing Autism, certainly SOUNDS like a medical guide.... from what some (including me!) would consider an unlikely and unpromising source. Still, I haven't read the book yet, so can't make a definitive judgement (and really did find Louder Than Words a great read).

The sad thing to me is that the autism debate has come down to a star v. star popularity contest. Of course, there's much more to it. But much as anger over the economic crisis has focused, laserlike, on a group of wealthy AIG execs, anger over autism-related issues has focused on a debate between two actresses.

Sure, it's fun to watch the sparks fly. But if we need Amanda Peets to be the ultimate spokesmom for the war against infectious disease - or Jenny McCarthy to raise awareness that vaccines are not always harmless - something's awry.

Source: http://www.examiner.com/x-2007-Autis...cines-v-autism

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Half of Utahns with autism lead fulfilling lives, follow-up


By ScienceMode

SALT LAKE CITY – Twenty years after first being assessed in a long-term autism study, 41 Utahns with the disorder had a higher social outcome than those in similar studies, University of Utah psychiatry researchers have reported in the Journal of Autism Research online.

Although the researchers can’t yet explain why the follow-up study showed the Utah group fared better overall in living independently, developing social relationships, and in some cases even showing higher IQs than 20 years ago, the results offer hope for many with a childhood diagnosis of autism, according to Megan A. Farley, Ph.D., the study’s first author and a research associate in the Department of Psychiatry at the U of U School of Medicine.

“This is an amazing group of people who, in many cases, did a lot more than their parents were told they would ever do,” Farley said of those who participated in the follow-up study. “This gives a lot of hope for younger people with autism and average-range IQs.”

Farley and her fellow researchers drew the follow-up study participants from an original group of 241 Utahns with autism who took part in a University of Utah and University of California, Los Angeles (UCLA), study from 1984-1988. The average age of participants in the original study was 7, while the average age at the follow-up study was 32. Participants in the current study had an average childhood non-verbal IQ of at least 70.

For the follow-up study, the researchers assessed the participants’ overall social outcome by their ability to maintain paid employment, the existence of meaningful social relationships, and their degree of independence in daily life. From these criteria, an individual’s overall social outcome was assigned to one of five categories: very good, good, fair, poor, and very poor:

* Very good meant the person held paid employment without extra support to perform job duties, had important social relationships, and a high independence in daily life.

* Good indicated the individual had a generally high level of independence at work and in daily life, requiring some extra support, and also had a friendship or some acquaintances.

* Fair reflected the need for regular support at work or home, but the person did not have to live at a special residential facility. The participants in this category had acquaintances through special activities but no particular friends.

* Poor showed the need for a high level of support, such as a residential living facility and planned daily activities for people developmental disabilities. Those in this category had no friends outside their residential living arrangements.

* Very poor meant the individual required a high level of care in a hospital setting with no autonomy and had no friendships.

By these measures, the researchers found that 24 percent of the participants had a very good social outcome; 24 percent had a good outcome; 34 percent had a fair outcome; and 17 percent were rated in the poor social outcome category. No one’s social outcome fell into the very poor category.

About half of the 41 study participants were employed in full- or part-time competitive jobs. Six were living independently, including three who owned homes. Three were married with children, and one person also was newly engaged to be married. Eleven of the participants have driver licenses and the same number had a higher IQ than when assessed 20 years earlier.

“Adults with autism haven’t received the attention from researchers that children have, but the few studies that have been done on similar groups showed 15 percent to 30 percent having good outcomes, compared to the 50 percent in our study,” Farley said. “One early Canadian study showed similar results to ours, but other studies have had fewer people living and working independently as adults.”

Although, Farley doesn’t know why the Utah group fared better than those in other autism studies, she thinks it may be related to early intervention to help children with the disorder and strong social and family networks in Utah.

The most important factor in whether study participants had a better living outcome was their degree of independence in daily activities—being able to take care of themselves, hold employment, live on their own or at least semi-independently, and take part in meaningful social relationships, according to Farley. Although IQ significantly influences social outcome, daily independence plays an even greater role in determining how well people with autism function, the researchers said.

Although encouraging, the follow-up study results also show autism’s devastating toll. About half the participants could not live or work independently, and the majority lived with their parents, although many of them had a high level of independence in their daily activities. Social isolation is a serious problem as well—44 percent of the group has never dated. In addition, 60 percent of the study participants, even some of those who had achieved independent living and working, were prone to anxiety and mood disorders and worried about a social stigma attached to autism. The IQ of eight participants declined since they first were evaluated 20 years ago.

The 41 participants in the follow-up originally were identified through a statewide epidemiological survey between 1984 and 1988 conducted by the U of U and UCLA. The goal of that study was to identify every person born with autism between 1960 and 1984 and who lived in Utah during the four-year survey. The survey was one of the largest population-based autism studies in the world, meaning it tried to assess the whole population of Utahns with the disorder rather than a select group. By assessing participants from the original study, the follow-up gives a unique perspective on the long-term course of autism, according to Farley.

The long-term follow-up also will help researchers identify issues that affect the social outcomes of adults who were diagnosed with autism as children, providing information that can help determine services that will help these adults lead more fulfilling lives.

“Our current results have encouraged us to go further in following up the entire sample of 241 adults who were identified with autistic disorder in the 1980’s,” Farley said. “We now know that, with the help of the remaining adults and their families who are willing to give of their time and energy, we will be able to have a better understanding of the life course in autism. We’re excited now to contact all of the families who participated in the original study.”

Source: University of Utah Health Sciences

Source: http://sciencemode.com/2009/03/23/ha...p-study-shows/

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'Spider-Man' rescues autistic Thai boy


by AFP

BANGKOK (AFP) — A Thai fireman turned superhero when he dressed up as comic-book character Spider-Man to coax a frightened eight-year-old from a balcony, police said Tuesday.

Teachers at a special needs school in Bangkok alerted authorities on Monday when an autistic pupil, scared of going to lessons, sat out on the third-floor ledge and refused to come inside, a police sergeant told AFP.

Despite teachers' efforts to beckon the boy inside, he refused to budge until his mother mentioned her son's love of superheroes, prompting fireman Sonchai Yoosabai to take a novel approach to the problem.

"My fireman rushed back to the fire station and took out his Spider-Man costume... The boy immediately ran into his arms with a smile," sergeant Virat Boonsadao said.

He said the fireman keeps the costume at work to liven up school fire drills.

Source: http://www.google.com/hostednews/afp...jcI6x5ULZyySyA

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Monday, March 23, 2009

Parents push for changing how disabled are taught


By Tiffany Lankes
Sarasota Herald-Tribune

Florida parents are pushing for a law that could dramatically change how teachers treat students with disabilities, banning techniques such as secluding children in isolated rooms, strapping them into chairs and spraying them with liquids.

The bill would require school districts to train teachers non-physical strategies for working with special needs students. It also would require teachers to file reports and notify a child's parents when restraints are used in emergency situations.

If the bill is passed, Florida would have one of the toughest laws in the country for regulating the treatment of the state's 376,000 students - about 14 percent - who qualify for special education.

"What we're talking about here is creating safety for teachers and children ," said Sylvia Smith, with Florida's Advocacy Center for Persons with Disabilities.

A similar proposal died last year after critics said it was vague and could restrict teachers too much. And this time around, the state is dealing with a severe budget shortage, also putting the future of the bill in doubt.

"Anything that is going to have a fiscal impact in this kind of year is going to be a problem," said Sen. Nancy Detert, R-Venice, chairwoman of the Senate Education Committee.

But supporters are pinning their hopes on a growing advocacy movement among parents, who say techniques referenced in the bill are dangerous. The movement gained steam after a former Venice Elementary teacher was found not guilty of abusing her profoundly disabled students, even after admitting to hitting them in the head with objects and strapping them in chairs to control their movement.

"There's just been too much going on," said Sharon Boyd, a Charlotte County parent who has been at the forefront of the push for the legislation. "We're done with it."

Hundreds of supporters plan to rally for the bill in Tallahassee on Developmental

Disabilities Awareness Day on Tuesday.

Florida's Department of Education has been trying for more than a year to implement its own rules, but each time it has brought a proposal to the table parents and advocates have said it is not strict enough.

Some of the techniques banned in the bill may seem surprising to people unfamiliar with special education classrooms, where teachers sometimes use unconventional strategies to teach students with extreme learning challenges and to control their behavior.

But the state does not have any policies or laws regulating what techniques teachers can use, even though there are rules for people who work with the disabled in health care settings.

The state allows school districts to decide, but most do not have specific written guidelines.

Parents and advocates say properly trained teachers can manage behavior without getting physical.

There is no way to know how widespread the use of restraints is in Florida classrooms.

Most school districts do not require teachers to record instances, or report them to anyone - including parents.

Some parents say they have no idea their children are being restrained until they come home with injuries.

"No one knows what goes on behind those doors," said Boyd, whose 9-year-old son has autism.

Even educators debate the legitimacy of restraints.

Administrators in Sarasota County say they do not allow teachers to use most of the techniques that would be outlawed in the bill.

"When I review the bill I didn't see it as an additional burden," said Sonia Figaredo-Alberts, who oversees Sarasota's special education services.

The Florida Education Association has not taken a position on the bill, but spokesman Mark Pudlow said the organization has a lot of concerns .

The bill has not yet been scheduled for a hearing before either of the Legislature's education committees, but Detert said her staff is conducting an analysis of its costs and its impact.

Advocates say that school districts already spend money on training and could redirect their resources.

They also say if teachers are using the correct techniques the need to use physical restraints, and file the accompanying paperwork, will be rare.

Source: http://www.gainesville.com/article/2...ed-are-taught-

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People With Autism Less Likely to Rely on Gut Instinct


By News-Medical.Net

People with autism-related disorders are less likely to make irrational decisions, and are less influenced by gut instincts, according to research funded by the Wellcome Trust. The study adds to the growing body of research implicating altered emotional processing in autism.

Decision-making is a complex process, involving both intuition and analysis: analysis involves computation and more "rational" thought, but is slower; intuition, by contrast, is much faster, but less accurate, relying on heuristics, or "gut instincts".

Previous studies have shown that our response to a problem depends on how the problem is posed - the so called "framing effect". A surgeon who tells a patient that there is an 80% chance of surviving an operation is more likely to gain consent than one who tells the patient there is a 20% chance of dying, even though statistically these mean the same thing.

Now, in a study published today in the Journal of Neuroscience, researchers in Professor Ray Dolan's group at the Wellcome Trust Centre for Neuroimaging at UCL (University College London) have used the framing effect to study decision-making in people with autism spectrum disorders (ASD).

According to the National Autistic Society, these disorders affect up to one in a hundred people in the UK. They range from mild conditions, such as Asperger syndrome, through to highly disabling conditions, such as Rett syndrome. Symptoms - which vary widely in severity - include language problems, poor social interaction and rigid patterns of behaviour and thinking.

Participants in the study performed a task involving deciding whether or not to gamble with a sum of money. For example, they would be given £50 and be presented with two options: option A was to keep £20; option B was to gamble, with a 40% chance of keeping the full £50 and a 60% chance of losing everything. This version was known as the "gain frame".

At other times, the participants would be presented with the "loss frame", the only difference being that option A was phrased in terms of losing money. In other words, when given £50, option A was to lose £30 of their initial amount; option B was the same as above.

Despite option A being essentially the same in both gain and loss frames, the researchers found that the "control" participants - those without ASD - were more likely to gamble if the first option was to "lose" rather than "keep" money. For participants with ASD, this effect was much smaller, suggesting that this latter group was less susceptible to the framing effect - in other words, they were less likely to be guided by their emotions into making inconsistent or irrational choices.

"People with autism tended to be more consistent in their pattern of choices, their greater attention to detail perhaps helping them avoid being swayed by their emotions," says Dr Neil Harrison.

Although this attention to detail and a reduced influence of emotion during decision-making is beneficial in some situations, it may be a handicap in daily life, explains Dr Benedetto De Martino.

"During social interactions a lot of information must be processed simultaneously, making this a very complicated computational task for the brain," he says. "To solve these complex problems we rely on simplifying heuristics - gut instincts - rather than extensive logical reasoning. However, the price that we seem to pay for this ability is that sometimes irrelevant contextual information leads us to make inconsistent or illogical choices.

"Less reliance on gut instincts by people with autism may underlie their difficulties in social situations, but also enable them to avoid potentially irrelevant emotional information and make more consistent choices."

The study reinforces previous research suggesting that the key difference in how people with ASD make decisions may lie in the amygdala, an area of the brain critically involved in processing emotions. In a 2006 study published in the journal Science, Dr De Martino and colleagues showed that decision-making involves activity in the amygdala. In people with ASD, the amygdala has been shown to differ from that in the majority of people - not in size, but in the density of nerve cells.

Dr Harrison believes their research may play an important role in highlighting the strengths of people with ASD, rather that focusing on negative aspects of the disorder.

"Our research shows a positive strength in people with autism, more research focussing on abilities as well as disabilities of people with autism will enable us to gain a clearer understanding of this condition while simultaneously assisting people with autism in living rich and full lives."

Source: http://www.opposingviews.com/article...n-gut-instinct

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Sunday, March 22, 2009

For an artist with autism, precision is all


By Joan Anderman, Globe Staff | March 22, 2009

WILLIAMSTOWN - Much of what matters to Jessica Park can be found in a small room on the second floor of a rambling old house in this western Massachusetts college town. The walls of Park's bedroom, which doubles as her art studio, are covered with posters of rainbows, lightning, Las Vegas, and astronomical phenomena: the constellations, galaxies, the moon. Perfume bottles and body creams, dozens of them, are lined up on a dresser. Trays of paints fill the shelves next to Park's drawing table, which holds a sketch for the artist's current commission, a painting of the Taj Mahal.

In a couple of months the architectural jewel will be rendered in Park's signature style: each spire, minaret, balcony, and dome transformed with a meticulous hand and mysterious vision into a precise riot of color.

"I use acrylics. Sometimes come straight from the tube, but usually mix them up," Park says of her brilliant hues. "I like how they look!"

Park is autistic, and her room is a window on what she calls enthusiasms and others call obsessions. Her previous enthusiasms - the subjects of Park's early paintings - include radiators, dials, and heaters. In recent years, Park's artwork has been dominated by Victorian houses surrounded by weather anomalies and set against night skies made of "purplish black," her favorite color. The skies are invariably filled with stars, painstakingly depicted in their correct positions and dimensions.

It would be hard to overstate just how keenly, and to what powerful effect, Park's art is an extension of her autism. As a small child, largely uncommunicative, Park was fascinated by abstract shapes and color gradations. She is also a mathematics savant, able since she was young to create her own complex number systems. (It took a mathematician to recognize the seemingly random series Park wrote on a piece of paper when she was 12, which turned out to be the squares of the numbers from 51 to 100 arranged according to the number of powers of 2 they contain.) Order, as it is for many autistic people, became a driving force in Park's life.

And so it is in her artwork, a selection of which is now up at Endicott College in Beverly. The well-defined edges and controlled patterns of brick, stonework, clapboards, and shingles appeal to the 50-year-old artist, according to her mother, Clara Claiborne Park, a former English professor at Williams College and author of two highly-regarded books: 1967's "The Siege: A Family's Journey into the World of an Autistic Child" and 2001's "Exiting Nirvana: A Daughter's Life with Autism."

During a recent visit to the Park family's home, exchanges with Clara, who is in her late 80s and has speech difficulties, were limited. Jessica's sister Rachel, who imports Asian art and artifacts for sale online, facilitated an interview with Jessica. (Another sister, Katharine, is a history of science professor at Harvard.)

Conversation focused on the tasks that make up Park's days: working as a clerk in the mailroom at Williams College's Paresky Center (in 2007 it was officially christened the Jessica H. Park Mailroom), a job she's held for nearly 30 years; taking care of household chores in the home she shares with her mother and her father, David Park, a retired physics professor; and cooking.

"Spaghetti sauce. Fish chowder. Eggplant. Tuna noodle casserole. And chocolate cake," Jessica Park says, when asked about her favorite dishes to make. Unable to engage for long, she regularly jumps up from her chair to look at the Las Vegas photos she and her sister Rachel have collected, or check the WeatherBug on her computer, or bring more tea and cookies to the living room. And while the formerly mute child is now capable of some social interaction, Park suddenly becomes agitated - as she has all her life - when a visitor asks a question that begins with the word "what." No one knows why.

Park's art is displayed throughout the house, a patchwork of well-worn rooms and narrow hallways, as is an honorary doctor of fine arts degree she received in 2003 from the Massachusetts College of Liberal Arts. Her father says that Park's evolution as an artist has played an extraordinary part in forming his daughter's identity.

"There are so many things she can't do, and we've always tried to emphasize the importance of this thing that she does well and use it as a support for her ego, her sense of self, her sense of her own value," David Park says. "I don't know how Jessy's mind works. But I do think this has meaning for her."

Jessica Park works slowly. One of her large pieces, which can be up to 24 inches by 18 inches, will take several months to complete. Park receives around $2,500 for a commissioned painting, according to her brother Paul, a science-fiction novelist, and around half that if the client is a family friend or affiliated with the autistic community. Park is also represented by Pure Vision Arts, a New York exhibition space for artists with developmental disabilities.

"It's not exactly a living," says Paul Park, "but that's because my mother hasn't run it as a living. If Jessy is working and being productive, that's what's required. The selling part of it is big, but not because Jessy likes to spend money. Jessy likes numbers. And she likes them to go up, not down."

The earliest work included in the Endicott show is a childlike abstraction made when Jessica Park was 10. But as the show's catalog notes, even this simple painting is characterized by a striking degree of order and precision - no overlapping of colors, strong patterning, and decisive composition - that is the key mechanism by which Park relates to the world around her. Noted neurologist Dr. Oliver Sacks, who told her story in a 1998 documentary film for the BBC series "The Mind Traveller," wrote the foreword to both of Clara Park's books as well as the exhibit catalog.

"For Jessy, artwork is not a hobby or a pastime or even a profession or a vehicle for expressing herself to others," Sacks writes. "It is, for her, a crucial way of exploring the varieties of life, within the tight constraints of her methodical systems. It is a way of balancing her life."

Everyone around Park agrees that her artistic development made a dramatic, and perhaps life-changing, leap when she met schoolmates Anna and Diana Saldo at Mount Greylock Regional High School, which Park attended for nine years. Intrigued by this girl who would rock and scream uncontrollably in class but could also, by that time, really draw, the twin sisters (both talented artists who would later go into special education) took Park under their wing. They became, in Anna's words, like peer tutors, accompanying her to gym and art classes despite jeers and teasing from other kids, and they spent two summers living with the Park family on Block Island.

"We didn't have a lot in supplies, little watercolor sets and cast-off printer paper, but we did art lessons that also went into life skills," recalls Anna Saldo, who lives in Williamstown and has Park over for dinner every Monday night. "Initially we modeled what to do, and she would do the same. Jessy was very withdrawn and socially inept, but there was obviously raw talent there. It was nurtured and cultivated, and it bloomed."

Park's artwork may be the gripping subject of books, a film, and gallery exhibitions, yet the artist herself couldn't be less interested. She would rather talk about the difference between perfume and eau de toilette. Her brother Paul can't say whether she actually uses the lotions and potions that hold so much fascination these days. All he knows is that they spend hours at the mall looking at containers, and that for Park skin care isn't so different from numbers, or rainbows, or painting.

"It's an autistic person's paradise, 50 products at each counter. Is this one a.m. or p.m.? Before or after bath? Cream or powder? Everything has a category with tiny gradations, and because she's got a powerful intellect Jessy turns it into a system that she invests in. She's the same way with bathroom cleansers and appliances and vitamin pills," says Paul Park. "It's the way she does her art."

Source: http://www.boston.com/ae/theater_art...cision_is_all/

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Friday, March 20, 2009

Autistic murder defendant poses challenges in Ohio


By THOMAS J. SHEERAN – 18 hours ago

KENT, Ohio (AP) — Sky Walker watches recordings of "The Price is Right" over and over again on a TV positioned just outside his jail cell, a calming ritual for the autistic teenager, who is prone to erratic behavior swings when his routine is changed.

He also gets his favorite barbecue potato chips, and visitors have been allowed to bring him McDonald's Happy Meals — an attempt to keep his environment as normal as it can be as he awaits a decision on whether he is competent to stand trial in his mother's fatal beating.

Walker, 18, is charged with murdering his long-doting mother, Gertrude Steuernagel, a professor at Kent State University who once wrote publicly about having to cope with her son's aggressive behavior. She was found unconscious in their kitchen Jan. 29 and died eight days later.

The case has posed special challenges to the justice system from the start; Walker had to wear a face mask at an initial court appearance to prevent him from spitting at deputies.

The case has also worried advocates, like Rory McLean, president of the Autism Society of Greater Cleveland, who fear that Walker's actions — he was found cowering in the basement when sheriff's deputies responded to the home — could be misinterpreted.

Walker, who has a court-appointed guardian, is due to be arraigned Friday on the murder charge but both sides agreed he did not have to appear in court. He is also charged with assaulting a deputy who investigated the beating. No pleas have yet been entered on his behalf.

To be deemed competent, a defendant would have to understand the charges against him and be able to help in his own defense.

Prosecutors and Walker's attorney declined to discuss the case. But Dr. Phillip Resnick, a psychiatrist who has worked in the Cleveland courts for decades, said interviewers would need to determine whether a defendant knew at the time of such a crime that killing was wrong.

Autism is a developmental disability that limits social interaction and communication skills, usually starting before age 3. Walker, for example, has trouble putting words together to express himself. A family friend said he uses words only in a way that his mother could easily interpret, such as saying "wheels on the bus" to indicate he was getting upset.

Those with the disorder can be easily upset by a different routine such as a new food item or schedule change. They might find the rub of clothing upsetting and often take comfort in repetitive behaviors, such as rocking back and forth. The gentle hum of a refrigerator might be maddeningly loud for the autistic.

As many as 30 percent of autistic children display some level of aggressive behavior, said Dr. Max Wiznitzer, who treats autistic children in Cleveland.

A 2005 study in the Journal of the American Academy of Psychiatry and the Law reported on the cases of three autistic defendants charged with murder. Two were sent to prison mental health units; the third was acquitted.

But an autistic man was convicted in 2004 in San Diego of killing a 17-year-old, and a man with a form of autism got a life prison term in Charleston, S.C., for killing a family friend.

"Generally, there is no diagnosis which would make someone categorically not responsible," said Resnick, who has seen hundreds of mental competency claims although few involved autism.

For his video arraignment on the initial charges, Walker had to be taken from his holding cell, which is being used in place of a regular jail cell so deputies can keep a close watch on him. Seated in a restraint chair and with a cloth mask to prevent him from spitting at guards, he thrashed his head back and forth.

"That's probably because he got out of a routine we've been able to establish for him," said Sheriff's Maj. Dennis Missimi.

Family friend Molly Merryman said she never saw aggressive behavior from Walker during visits he and his mother made to her farm. The adults would make dinner, and Walker would pace a 120-foot circle for hours outdoors, she said.

But as Walker grew older, his behavior appeared to change. Steuernagel hinted at this in a campus newspaper article she wrote a year ago belittling complaints by colleagues on how busy they are.

"Busy? Try spending an evening sitting in a closet with your back to the door trying to hold it shut while your child kicks it in," she wrote.

Neighbor Donald Toth recalled talking to Steuernagel at curbside several years ago. Walker approached his mother and began pounding her with his fists. Steuernagel excused herself, grabbed her son and took him into the house, Toth said.

Steuernagel kept her cell phone handy and warned students she might have to leave class on short notice to check on her son, who attended high school. But, Merryman said, mother and son shared happy moments. They went to Disney World. They danced, taking turns leading. When he was younger, they went door to door on Halloween.

Still, Steuernagel yearned for a simple conversation with her son.

"I keep waiting for that day," she wrote in the Daily Kent Stater. "In the early days, right after his diagnosis, I was sure it would happen. Now, as Sky has celebrated his 17th birthday, I'm not so sure that will happen."

Source: http://www.google.com/hostednews/ap/...zLCtAD971AA5G4

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