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News- Page 3
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Various Articles : Life With Autism
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Posted by sylvia on Tuesday, November 29, 2005 (17:31:10)
Canon City Daily Record September 2005
By David Young
On a brisk September afternoon, Jeffrey Leader looks just like any other 9-year-old boy as he runs breathless through a field at Fremont Elementary School during recess. Wearing a bright orange “No Fear†T-shirt and flashing tennis shoes that light up with each step, he sprints back and forth playing tag.
However, once Leader stops running and starts slamming his tiny fists into his head in frustration, it is clear he isn’t like other boys his age: He is autistic.
Autism, which affects 1.5 million Americans today, according to the Autism Society of America, is a neu-rological disorder, causes unknown, which affects normal functioning of the brain. Specific areas affected are those that deal with social interaction and communication.
In Leader’s case, these are two areas where he struggles the most, his teacher of three years Ashley Johnson said.
The disorder’s usual onset is within the first three years of a child’s life with some sort of early indication. This is what makes Leader different, said his mother, Trudy Leader. Leader progressed fine until he was 2-and-a-half. He was talking and functioning completely normally. Then Trudy took him to get his measles, mumps and rubella vaccination, within two weeks he had reverted back to a baby. According to doctors there is no connection between MMR shots and the disorder, but Trudy thinks otherwise.
“Two weeks after the shot, he just stopped everything,†Trudy said. “It was like a robber came in the mid-dle of the night and took my son.â€
The diagnosis came as a shock to the Leader family and in the blink of an eye, things changed.
Today Leader is quiet, antisocial, easily upset, territorial about personal space, violent, self-abusive — especially when he can’t communicate what he wants, Trudy said.
“It’s kind of like he drifts off into his own little world,†Trudy said with tears welling in her eyes. “When he is like that he wants to be left alone, other times he will knock you down and kiss you.â€
It is when Leader is in his “own little world†that Trudy hurts the most for her son.
“The saddest part is he will just laugh or cry for no apparent reason. It just breaks your heart,†Trudy said. “He has a really big heart. Jeffrey is a really sweet kid.â€
Johnson said that Leader’s, who is mentally at a third-grade level, official type of autism is “child disinte-grated disorder.â€
“The way he senses things is different than how we sense things,†Johnson said, while watching Leader work on a computer. “He takes in information different from us.â€
For this reason, it is hard to tell what is going on in Leader’s mind. He talks, but only in simple sentences. Johnson said he learns to make connections between words and actions. For instance, when Leader wants to play tag, he says “Chase Jeffrey,†Johnson will do just that. Or when Leader says “I want Doritos†at snack time, Johnson will give him a handful of chips.
It is by this methodical and systematic method that Leader functions. Johnson said that routine is very important in Leader’s life. He knows what is coming and doesn’t like surprises or events that are out of his control. As if to prove Johnson’s point, Leader’s computer headphones came off and he started screaming with frustration for them to be fixed.
“The biggest problem is social and just communicating with people,†Trudy said. “When he can’t commu-nicate we have to guess and figure out what he wants, kind of like a little baby.â€
If Leader cannot communicate what he wants, he will hit and bite himself while screaming. Because of his violent outbursts and the way Leader learns, he goes to school four hours a day in an isolated room in the special education building.
Trudy said the school has been great in accommodating Leader and working with him and the family in anyway possible. Johnson echoed Trudy’s praise, saying she has been able to go to different workshops and even take her aids with her thanks to the school.
Johnson, who describes her job as challenging but rewarding, said Leader is a smart child.
“I have seen a lot of change and improvement,†Johnson said. “He is a smart kid. He has very strong visual perception skills.â€
Leader puts puzzles together easily, recalls long lists and even recites the alphabet backwards. Despite “being in his own world,†Leader is conscious of the people around him.
“I think he is pretty aware of his surroundings,†Johnson said.
Leader also is teachable and is working with Johnson on the assessment of basic logic and learning skills curriculum. The program contains 26 areas, each with their own tasks.
Right now, Johnson is attempting to teach Leader his personal information, such as his name or address.
“What’s your name?†Johnson asked. After no response Johnson asks again this time holding up a cue card with Leader’s name written on it.
“Jeffrey,†Leader said, picking a prize from his box of trinkets. Leader loves small beads or candies and when he cooperates, he gets to choose one from his “prize†box.
Despite his many differences, Leader is a normal kid in many respects. He loves to play with his sister, 20-year-old Mandy, and Rottweiler “Bruiser,†who Trudy describes as Leader’s best friend. Leader also loves video games, Disney movies, camping, fishing and wrestling with his father Gary, who Leader adores, Trudy said.
Leader’s future is uncertain, but Trudy is not giving up hope on her son.
“I am praying that he will come out of it,†Trudy said. “We will give him all the help we can, hope he can lead a fairly normal life and be productive.â€
The one thing Trudy said she would like people to understand about her situation is that compassion and a friendly smile can go a long way.
“If people see a kid throwing a fit they need to realize that there could be a problem,†Trudy said.
Even with all the frustration, pain and sadness that comes as a result of Leader’s autism Trudy wouldn’t trade it for the world.
“This really has changed my life. When I first found out I was devastated,†Trudy said. “Now that I know more I can’t help but love him. He has really enriched our lives. I wouldn’t change it for anything, we love him so much.â€
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Various Articles : Dealing with autism
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Posted by sylvia on Monday, November 14, 2005 (20:35:29)
Madison Spetember 2005
By Debra Carr-Elsing
It wasn't the birthday present Kelly Adams wanted in 2002.
That was the year when she and her husband, Pete, found out that their son has autism. The diagnosis came on Kelly's birthday.
"I definitely felt something was wrong when Roman was about 14 months old, but we were first-time parents, and everyone kept telling us that children develop at different rates," recalls Kelly Adams, who lives with her family in Fitchburg.
There was a lot of second-guessing. When Roman still wasn't talking at age 2, however, a multi-disciplinary evaluation got under way.
"It was almost a relief to finally know what we were up against," Kelly Adams says.
As decisions were made about available services and treatment options, the journey into Madison's autism community got started.
"We're originally from Delaware, and we actually moved here so Roman could get intensive behavioral therapy with the Wisconsin Early Autism Project," Kelly Adams says.
There have been biomedical treatments, too, along with a special diet plan, and Roman, who turns 6 on Sunday, is flourishing.
"He's in kindergarten at Stoner Prairie Elementary School, and he's doing really, really well," Kelly Adams says.
"Roman started speaking at 3, and it's incredible to hear him now say 'Mommy, I love you.' There's no sweeter sound on the planet than that."
Autism often is referred to as a spectrum disorder because it can range in degrees from mild to severe. About a third of all children with autism develop normally during infancy, only to regress during the toddler months.
That's what Arkadiusz and Bozena Zarzycki say happened to their younger son, Alan. The Zarzyckis, who are originally from Poland, moved to Madison from Omaha, Neb., to get help for their son.
"He started out as a happy baby with normal development," says Bozena Zarzycki. "Alan rolled over at 6 months. He was walking at 11 months, and his receptive language was developing.
"At 18 months, we started to notice he wasn't responding to our voices, and whatever skills he had mastered were gradually lost."
This took place after Alan received a childhood vaccine and became violently ill, says Arkadiusz Zarzycki.
"Alan was vomiting and had diarrhea for weeks. He was completely destroyed. We saw our happy boy who loved to sing disappear before our eyes."
There's no proven cause for autism, but many parents, including the Zarzycki family, have long believed the disorder is triggered by ill-timed or unclean vaccines. Until a few years ago, some formulations of childhood vaccinations contained thimerosal, a mercury-based compound. Despite lack of scientific evidence linking autism to thimerosal, it is now standard that childhood vaccines are thimerosal-free.
"My heart goes out to parents of newly diagnosed children with autism because they often feel helpless and uncertain about the future," says Kelly Adams. "There's still so much that we don't know about the disorder, and what works well for one autistic child doesn't necessarily work well for another."
Organizations like Friends of Autism and the National Autism Association are good sources of information, she adds.
There's also a newer group called Generation Rescue that offers information on treatment plans for autism. It's a group that also promotes an association between autism and mercury toxicity.
"Parents know their child better than anyone else, and they can decide what approach gives their child the most success," Kelly Adams says.
A growing number of parents and medical professionals treat autistic children with a combination of behavioral therapy and biomedical interventions, such as restrictive diets, detoxification therapies and hyperbaric oxygen therapy.
The premise for biomedical intervention is that certain neurological disorders compromise our gastrointestinal and immunological systems.
"A lot of children with autism also have gastrointestinal disorders, but because these children typically do not communicate very well, these disorders often go unrecognized," Bozena Zarzycki says.
In addition to autism, her son Alan was diagnosed and treated for colitis, as well as stomach problems.
"Healing the inflammation in his gut took care of the food absorption problems, and Alan started growing again," she says.
"My theory is that you cannot teach a child who is in pain. When colitis no longer was an issue, Alan made great progress with his behavioral therapy."
Development is back on track, she adds. Alan now is talking. He's very creative, likes photography and draws beautifully.
He also enjoys playing with his older brother, Oskar, 8.
"In the last few months, we got Alan back," Arkadiusz Zarzycki says.
"There's still a lot of work to do, but a year ago, we never thought Alan would catch up."
Alan also is on a gluten- and casein-free diet, and he takes mineral and vitamin supplements.
While the very nature of autism is not well understood, most agree that early diagnosis and intervention are vital. There's also a consensus that autism is a complex pervasive developmental disorder that involves the functioning of the brain.
Researchers aren't certain what causes autism, but it's likely that both genetics and environment play a role. Some genes have been identified and associated with the disorder, and studies on autism have found irregularities in several regions of the brain.
Other scientists suggest that people with autism have abnormal levels of serotonin, or other neurotransmitters in the brain. In fact, a recent UW study shows that in addition to the male hormone testosterone, estrogen hormone and dopamine neurotransmitters also play critical roles in the difficulty that autistic children have with social interaction.
It is hoped that the UW findings will be able to help diagnose new autism cases and potentially pave the way for new hormone-based therapeutic approaches.
For many children, autism symptoms improve with treatment and with age.
Two years ago, budget cuts and a poor economy contributed to the fact that in-home services to families with autistic children became more limited.
To help remedy the situation, state Rep. Kitty Rhoades plans to introduce legislation for an Autism Scholarship Program this week. It's an effort to meet the needs of more children with autism, using state dollars outside of Medicaid.
"Wisconsin is better than most other states when it comes to helping children with disabilities," Arkadiusz Zarzycki says.
He also has high praises for the efforts of Madison School District staff to develop educational programs for children with disabilities, and he's worked closely with Nancy Yoder, principal of Stephens Elementary School, where Alan is in kindergarten.
"They're all trying so hard with limited resources, and they're not giving up on our kids," he says. "It's needed help because as parents, we live under constant stress, trying to get therapies and treatments covered by insurance or government programs.
"We feel guilty spending a spare dollar that could help pay for extra hours of therapy."
In many ways, parents of children with disabilities put their own lives on hold, he adds.
"You sacrifice everything, and friends drop by the wayside because we have no time to socialize," Arkadiusz Zarzycki says.
Even spousal relationships get ignored when couples deal with a disability, and more than 80 percent of such marriages end in divorce, he adds.
"Autism affects the entire family, and it can be devastating," Bozena Zarzycki says.
"It's a journey that has made us better people, though. We now look at people with disabilities differently, seeing beyond the wheelchair or the disability. We see the person."
"We're hoping that others will be able to appreciate the person that's emerging in our son Alan, too."
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Various Articles : Autistic children make beautiful art
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Posted by sylvia on Monday, November 14, 2005 (20:23:52)
YnetNews September 2005
By Rebecca Yaacov
In Israel today, estimates are there are 4,000 autistic people; 250 children diagnosed with autistic disorder every year ALUT seeks to help, advocate for them.
A few years ago, just after sunset in the small village where I live, we heard some crying outside. As we went out we saw everybody crying and looking for a small child who was missing.
Finally, just before midnight, we found him walking around in the play garden, not so far away from his home, minding his own business,
and unaware of the drama surrounding him. People said that the boy suffered from autism, which was the reason he didn’t respond to our calls.
A while ago, I came across a beautiful calendar produced by ALUT (Israeli Society for Autistic Children) printed with spectacular drawings that drew my attention. As the owner of a company whose main goal is to promote Israeli artists and art by distributing their unique items worldwide, I wondered who the painters were.
Different way to say
It was my astonishing discovery that all the drawings were made by autistic children.
I looked at the pictures and remembered the young child walking in the dark garden while we all looked for him. I recalled the talks about his inability to communicate. But looking at the drawing I felt something in my heart, as these children might have different way to say things.
The drawings were rich with colour, emotions and vivid imagination; it seemed like through their painting they were trying to reach out to the world and share their feelings and thoughts. I felt I had to do something to help those young artists.
Since ALUT was producing calendars and New Year’s greeting cards with autistic children's paintings in order to raise money for their activities, I volunteered to help them sell these items through my company's website.
In Israel today, estimates are that there are 4,000 autistic people, in addition, 250 children are diagnosed with autistic disorder every year. Autism is detected at birth and usually lasts throughout an individual's lifetime; it is know to be one of the most serious disorders.
Advancing rights
ALUT was established by parents to autistic children, in order to provide a proper environment to the autistic population in Israel. The organization’s main goals are to advance the rights of autistic children in Israel, ensure their well-being, education and integration in order to normalize the life of these children and their families.
To attain these goals, ALUT operates sheltered centers serving as "homes for life" for autistic adolescents and adults, occupational facilities, trained professional staff to work with autistic people, day centers (Alutaf) for infants under 3 years old; and support centers for families with an autistic child.
At present, they providing services to 1,500 families; however, there are still more then 160 other families who await their help.
About ALUT
ALUT is a parent society striving to advance the rights of autistic children in Israel, and to ensure the well-being, education and integration of the autistic population. Alut was established from the parents' needs, in order to normalize the life of these children and their families. The Society's goal is to ensure the well-being, rehabilitation, future, economic and social status of autistic people in Israel.
The facilities operated by ALUT to attain these goals include:
Sheltered centers serving as "homes for life" for autistic adolescents and adults.
Occupational facilities adapted to members' abilities and vocational skills.
Training professional staff to work with autistic people.
A day center (Alutaf) for infants under 3 years old.
Assistance to existing facilities such as support to kindergartens and schools, extra paramedical treatment, treatment equipment, etc. All this is in addition to programs offered by the Education Ministry.
Development of new services for individuals afflicted with autism or PPD, based on treatment models for both youths and adults.
Centers offering support, information and counseling to families with an autistic child.
Legal aid - promoting the rights of autistic children and adults in Israel, including enactment of legislation.
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Various Articles : Centre that can open door for autism sufferers
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Posted by sylvia on Saturday, November 12, 2005 (09:14:35)
The Scotsman September 2005
By Sarah Howden
We do it instinctively, without a second thought. But for some, communication and interpreting subtle signals of tone, facial expression and physical gestures can be near impossible.
That's because they have autism. And although it was first identified in 1943, it's still a relatively unknown disability despite the fact it affects more than 500,000 families throughout the UK to varying degrees.
People with autism are not physically disabled. They don't require wheelchairs. They could be married, in a relationship, be a parent, hold down a career and look like the average Joe walking down the street. Autism is almost invisible, so understanding the condition is difficult.
"They are like everybody else and want to be like everybody else," says Don Mackenzie, project manager at Number Six, a new one-stop-shop support centre for adults with autism in Edinburgh. "The only difference is they are often seen as aloof, or arrogant or geekish, which is not the case. This is because they don't know the rules."
According to Don, autism is a lifelong condition that affects the way a person communicates and relates to people around them. "Although there is enormous variability within the spectrum of autism, people with autism generally experience three main areas of difficulty, which are known as the 'triad of impairments'. These three areas are social interaction, social communication, and imagination and behaviour. Other characteristics of autism are repetitive behaviour patterns and resistance to change in routine."
One of the conditions on the autism "spectrum" is Asperger's Syndrome (AS), a more common neurodevelopment state. "People with Asperger's are of average or above average intelligence," says Don. "They speak fluently, although their words can sometimes sound formal or stilted.
"Many want to be sociable, however, because they find it hard to understand non-verbal signals - including facial expressions - they experience difficulties in forming and maintaining social relationships."
Don believes approximately 7500 people in Edinburgh and the Lothians suffer from autism, with four times as many men suffering from the condition as women.
"One of the major areas people suffer in is socialising," explains Don. "They don't do small talk very well.
While I would say good morning to you as it's a way of communicating, someone with AS wouldn't understand that so would probably say nothing."
And diagnosing the condition isn't easy either. Don explains: "It's quite difficult to tell if someone has Asperger's, and it often goes undiagnosed or isn't diagnosed for a long time.
"What we're finding happening is that a young person in a family is being diagnosed early and then the family realise that someone else has had it too."
But once a diagnosis is made, it can open the door to a better life. NHS Lothian created the autism support centre Number Six, Melville Crescent, for over-16s with high functioning autism or Asperger's. With £750,000 funding from the Scottish Executive, the service, provided by Autism Initiatives, offers a wide range of health, support and self-help services, including social skills development and job training.
The centre, which is one of only two in the country, also includes a library, internet access, and, most importantly, a detailed social calendar. "For adults with Asperger's there was nowhere to go," says Don. "Because they have no 'disability', there were no services for them once they left school. Now, there's Number Six.
"It offers a range of services but most importantly it's a safe and supportive environment, where individuals can meet others with Asperger's, can talk to staff who understand, access specialised training such as social skills programmes and importantly, they can access information on social events."
Since its opening in April more than 90 autism sufferers have visited Number Six and Don is certain this number will increase.
He says: "It's the only place there is for people with Asperger's. They can come in and access the information and the facilities they need. They can also learn the rules. And they can make friends."
Rising success for US teaching method
Perhaps the most famous development in helping children suffering from autism is the Son-Rise programme, created by American teachers Barry and Samahria Kaufman when their son, Raun, was diagnosed as severely and incurably autistic.
Although advised to institutionalise him, they instead designed a home-based program in an attempt to reach their little boy.
The programtransformed Raun from a mute, withdrawn child with an IQ of less than 30 into a highly verbal, socially interactive youngster. Bearing no traces of his former condition, Raun graduated from an Ivy League university and currently teaches families and individuals at the Autism Treatment Center of America - also established by his parents after the publication of their book "Son-Rise" and the award-winning movie Son-Rise: A Miracle of Love.
One Edinburgh mother who has benefited from the programme is Sue McLernon, whose two children, Shaun, 16, and Danielle, 13, were diagnosed as autistic when they were four. They have visited the US centre twice and Sue describes the difference in her children as a "miracle".
Now, the Seafield mum has become Edinburgh's team leader for the Walk Around the World charity event next Sunday. The event aims to raise money to help children and families affected by autism. Log on to www.walkaroundtheworld.org for more information.
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Various Articles : Social services in ‘witch-hunt’
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Posted by sylvia on Saturday, November 12, 2005 (09:01:18)
Ham&High Broadway September 2005
By Jonathan Marciano
A family has criticised Haringey Council's secret investigation into the welfare of their severely autistic child.
The father says the authority - slammed for failing to help murdered six-year-old Victoria Climbie - is now overcompensating and launching harrowing investigations based on flimsy evidence.
"I feel we have been subjected to a witch hunt," said the father, who does not wish to be named. "They conducted secret strategy meetings before we knew anything about it. It was purely by chance that we found out.
"The distress should have been avoided as they had access to all the information they needed in relation to the child's medical condition."
The child was diagnosed with autism and bowel disease soon after birth and was given a strict course of drugs by medical experts.
Concerns abut the child's welfare were first raised by school staff troubled by the amount of medication he was taking.
A lengthy investigation involving two meetings of senior civil servants, social workers, police and health and education officials ended only when the NSPCC completed a special investigation report and the council decided not to undertake a formal child protection investigation.
The father, a former university lecturer, used data protection laws to get hold of the details when he found out about the case.
The minutes of one meeting, held in March, said: "[The child] takes a high dose of medication, including anal suppositories for supposed relief of constipation and pain."
It adds that the child's diet is "more strict than the usual restrictions made with children who have autism".
The father told Broadway: "The school has the medical records and staff have even been to a session involving his doctor.
"They made no effort to contact the Royal Free Hospital, where our child was diagnosed by one of the leading doctors in the field and where we have appointments two or three times a year.
"It shocked me that non-medical people were so quick to challenge senior medical opinions.
"They could not have done anything more calculated to undermine our coping."
Liberal Democrat councillor Wayne Hoban, who has called for a review into social services investigations, said: "It is perhaps understandable that Haringey social services in the post-Climbie era is sensitive to allegations of failures in managing child abuse cases, but this should not
be at the expense of caring families."
A spokeswoman for Haringey Council said: "We did not undertake a child protection investigation into this child.
"Any decision to undertake a child protection investigation is taken after consulting all the agencies involved with the family, using information relating to the individual child, their safety and well-being."
Broadway understands that the family is seeking legal redress against the council.
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