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News- Page 4
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Various Articles : 'Cheap' care offer angers mother
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Posted by sylvia on Wednesday, November 09, 2005 (11:57:01)
BBC September 2005
The mother of a boy with special needs says social services tried to take away her son after they refused to offer him a place at a special school.
Curtis Thurland, who has a form of autism, has been refused the special education experts feel he needs.
His mother, Mandy Thurland, who has the support of her MP in Luton, fears councils are choosing care provision over education because it is cheaper.
On Tuesday Luton Borough Council said Curtis's needs were being reassessed.
The boy's eccentric and unpredictable behaviour has put him and others in danger.
He was in hospital for two days after being attacked by another boy and he has physically taken out his frustration on his mother.
For years Mrs Thurland fought to have her son's condition diagnosed and when it was confirmed he had Asperger's Syndrome she thought the right support would come through.
But there was to be no specialist education and she said a social worker then asked her to sign a form for Curtis to go into care.
"I said how it this going to solve his educational needs? He needs an education. He needs help with his disability. I said how is putting him into care going to solve this?
"I am so angry that they would do this to families. It seems that because of money they are putting a vulnerable child with a disability out of his home."
Child psychiatrists and the local MP, Kevin Hopkins, have all written to Luton Borough Council urging them to give Curtis greater support.
Mr Hopkins said Curtis needed a residential specialist education in an institution which specialised in Asperger's Syndrome and similar conditions with their associated behavioural problems - not being taken into care.
Home tuition
Educational psychologist Allan Willis said taking the boy into care would be potentially counter-productive and an inappropriate response in this case.
On Tuesday a statement issued by the council said there were no plans to take Curtis into care.
"We are doing our very best to meet Curtis's educational needs, which are currently being reassessed.
"As an interim measure we have offered home tuition from a highly qualified tutor with substantial experience of working with children with the specific special needs Curtis has.
"As with all children, our aim is to support the family in caring for Curtis at home. We have no plans to take him into care."
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Various Articles : Autism linked to parents with high level of education
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Posted by sylvia on Wednesday, November 09, 2005 (11:26:42)
Telegraph September 2005
By Sarah Womack
Parents of autistic children tend to be more highly qualified than parents of children with other mental problems, according to a controversial study for the Department of Health.
It also links a wide range of "clinically recognisable" mental health problems in youngsters to divorce and family breakdown.
The study of 7,977 children found that one in 10 children between the ages of five and 16 had a mental disorder.
But unlike children with more common disorders, autistic children had better educated parents: 46 per cent had parents with qualifications above GCSE compared with 35 per cent of other children.
Autistic children were also less likely to live in poor families: only nine per cent compared with 20 per cent of other children lived in homes with a weekly income of less than £200 per week.
They were, however, similar to the other children in that many lived in families where neither parent worked.
The study, by the Office for National Statistics, said the unusual combination of high educational status and low economic activity among parents of autistic children "reflects their heavy caring responsibilities".
The ONS's report confirms findings from the first national survey in 1999 which recorded the same number of children with a mental disorder.
In 2004, four per cent of children had an emotional disorder (anxiety or depression), six per cent had a conduct disorder (aggressive, anti-social or disruptive behaviour), two per cent had Attention Deficit Hyperactivity Disorder (ADHD), and one per cent had a less common disorder, such as autism, an eating disorder or selective mutism. Around two per cent of children had more than one type.
The study was carried out to find out whether mental disorders were on the increase, and to look in more detail at children with autistic spectrum disorder.
Boys were more likely to have a mental disorder than girls. Among 5- 10-year-olds, 10 per cent of boys and five per cent of girls had a mental disorder. Among 11- 16-year-olds, the proportions were 13 per cent for boys and 10 per cent for girls.
The prevalence of mental disorders was also greater among children and young people in certain families, such as lone parent families (16 per cent) compared with two-parent families (eight per cent) and in step-families (14 per cent) compared with those with no stepchildren (nine per cent).
Dinah Morley, deputy director of Young Minds, the children's mental health charity, said the figures were a wake-up call to the "tremendous cost" of divorce.
"We can't turn the clock back to a time when all children stayed with their birth families," she said.
"But we can start to be more aware that these things that adults do impact very deeply on children. I think it is a wake-up call to adults to be more aware when they decide to divorce of the tremendous cost to the children. It is important for society to think how in the future it is going to support children better."
However statisticians emphasised that while there was a link between divorce and mental health problems in children, it was not clear whether the divorce followed the diagnosis of the mental problem or whether it may have triggered it in some way.
They added that mental health problems in children were also more common where the parent had no educational qualifications (17 per cent) compared with those who had a degree (four per cent) and where a parent was an unskilled manual worker (15 per cent) compared to a doctor or lawyer (four per cent).
One per cent of children aged 5-16 had autistic spectrum disorder.
The majority - 82 per cent - were boys. Almost all the children had a physical complaint as well (89 per cent compared with 54 per cent of other children).
Tim Loughton, the shadow health minister, said: "The Government urgently needs to make it easier to identify problems early on in schools and to provide appropriate treatment, that does not mean admission to adult wards or excessive reliance on the ''chemical cosh of drugs".
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Various Articles : Condemned it may be, but institutional care is vital for the disabled
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Posted by sylvia on Friday, September 30, 2005 (15:35:39)
TheAustralianNews August 2005
By Prof. Judy Lumby
Lisa got the call at work. Police were outside her home, where her son was "holed up" after making yet another racket that disturbed the neighbours.
They were about to break down the front door when she arrived. Lisa is the only person Peter listens to, even though he often assaults her.
Peter has Asperger's syndrome. He's now an adult and Lisa is his sole carer. It wasn't quite as bad when he was at school, but the day came when he refused to get in the bus. Lisa couldn't physically force him to do anything. Peter's father abandoned the family long ago. Lisa's daughter moved out too, because Peter was violent towards her.
The last time (two years ago) Lisa tried to get Peter admitted to a mental health facility following a particularly violent incident, access was refused on the grounds he was developmentally disabled, not mentally ill.
Peter has since moved into community housing. But Lisa still regularly gets rung in the middle of the night because the inexperienced and often untrained staff can't manage him.
At the moment a couple are on trial over the death of their adult son, born severely physically impaired and intellectually disabled. Born without eyes, he was about to lose all contact with the outside world due to impending hearing loss.
Parents of disabled children love their children as much as anyone does. But caring for a severely disabled child takes a severe toll.
Paul Neville, MP for Hinkler in Queensland, has recently raised the plight of such families in the House of Representatives, noting the lack of respite care or financial assistance nationally.
As he put it bluntly: "If your child has a respiratory problem, you almost automatically get an allowance. But if your child's kicking the walls at home, spreading food around the kitchen, if he needs two parents to changes his nappy and if he chucks faeces all around the house, you're not eligible for any commonwealth benefit."
I well remember the days when severely disabled children were placed in institutions and disability nursing was a specialty branch taken up by registered nurses with special skills and dedication.
While institutionalisation was perceived to be outmoded, and even barbaric, parents and families could at least have normal lives.
Following the Richmond Report and the subsequent de-institutionalisation, which saw the mentally ill and developmentally disabled literally and actually thrown out on the streets, this branch of nursing faded away, despite protests by many in the profession who believed the need was great.
How right they have proved to be. Developmental disability and mental illness have increased. And in terms of funding, infrastructure and social awareness, mental health is well ahead of developmental disability as evidenced by the present Senate Select Committee on Mental Health.
Few doctors work in the area of developmental disability and in most cases medication cannot make any substantial difference.
What is needed is co-ordination of services, early diagnosis and ongoing intervention, along with adequate government funding, support for intensive tailored programs and social and psychological support for families. Those affected by developmental disability directly or vicariously need lifetime support.
Recently I asked some families why they thought their pleas for help went unheeded. They all said their whole lives and energies were taken up in caring for their children. They had nothing left over for political lobbying. If you have to be vigilant 24 hours a day, often with limited income, you have no capacity for anything else in your life. And in the main, society wants problems to go away.
Institutionalisation was once condemned because it was seen as a means to marginalise and hide away those we preferred to ignore. The present situation is worse because it parodies the past. We pretend to have embraced the developmentally disabled and brought them into our society, while all along we alienate them and deny them access to healthcare, education and employment.
As Graham Vimpani, professor of paediatrics and child health from the University of Newcastle, puts it bluntly: "The split between services provided through health systems and those provided through disability portfolios results in many unmet needs for children with disabilities and their families as agencies squabble over responsibilities in a climate of resource scarcity."
Meanwhile, individual potential is being lost, scarce resources are wasted and families are being ripped apart by a system which prioritises medical miracles, short-term visible results and silences those who are disadvantaged and disempowered.
Note: Professor Judy Lumby is executive director of the College of Nursing.
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Various Articles : A way to bring the missing back home
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Posted by sylvia on Friday, September 30, 2005 (10:57:53)
Sentinel August 2005
BY PATRICIA A. MILLER
Jay and Barbara Sidrer are ever vigilant. They have to be. The Colonia couple has twin 10-year-old autistic sons, one of whom has a tendency to wander. Their house is almost in lockdown.
“It’s tough,†Jay Sidrer said. “Basically, our house is locked up. We have to keep our front door double-bolted, but now they are almost to the height to where they can get to that.â€
So the couple was happy to hear that the Board of Freeholders last week approved a $10,000 contract with Project Lifesaver to purchase 30 tracking bracelets and tracking systems for two Middlesex County sheriff’s cars.
“It’s an added feature that helps us,†Sidrer said.
The Sidrers wrote to the freeholders earlier this year, to ask if the county could provide the program. The couple first discovered Project Lifesaver when they watched a home makeover show that featured a deaf family who also had an autistic child with a penchant for running away.
“They had no way of knowing when he would leave the house,†Jay Sidrer said. “We looked into it and purchased the system ourselves for our house.â€
Project Lifesaver Interna-tional, a Virginia-based nonprofit organization, provides the program to public safety and government organizations.
So far, the organization claims a 100 percent recovery rate, with most people found within 30 minutes of being reported missing, according to Project Lifesaver’s Web site.
“Most of the counties in New Jersey have them,†Sidrer said. “They [Project Lifesaver] sent the paperwork on it, and Middlesex County wasn’t one of them. We wrote a letter to the freeholders with all the information about Project Lifesaver. They said it would be something useful and they took over.â€
The project is expected to get under way sometime in the fall, after the county Department of Human Services and the county Office on Aging finishes the outreach for people who might need the bracelets, like Alzheimer’s patients and autistic children, county Administrator Walter A. De Angelo said.
The purchase price also includes a six-month supply of batteries for the bracelets. The batteries must be changed once a month, De Angelo said.
The radio frequency technology involved with the bracelets and tracking devices is “fairly old,†said Robert Recine, senior systems analyst with the county’s information technology department.
“The batteries last much longer with this,†he said. “The bracelet almost looks like a wristwatch, but it’s a plastic case, with a round piece about the size of a watchface on the inside of it.â€
The bracelets are primarily worn on the wrist, although some autistic children wear them on the ankle, he said.
“It’s tough for them to learn something new or different,†he said. “On adults it works on the wrists.â€
The bracelets are difficult for the person to remove once they are on, he said.
“The band is not easily removable,†he said. “You have to have something to remove it with. I won’t say it’s never happened, but it doesn’t happen often.â€
A sheriff’s officer will go out to the person’s home once a month to change the battery, Recine said.
“They will be monitoring it,†he said. “It also helps for them to get to know the individual. They can build a bit of history on them.â€
Each wristband has a transmitter that emits a tracking signal every second, 24 hours a day. Each bracelet also has a unique radio frequency, according to the organization’s Web site.
Two sheriff’s cars will be outfitted with the receiving units, along with hand-held devices, Recine said.
“They emit a beeping sound,†he said. “The closer you get to the wristband, the louder the sound gets. It’s pretty simple. The idea is when someone goes missing, they make a phone call. The sheriff’s officer will go to the last known location of the person and start to search from there.â€
The program will be open to anyone in Middlesex County, primarily Alzheimer’s patients and autistic children, De Angelo said.
The county tracking system will be an extra measure of security for the Sidrers.
Even though the Sidrers already have a smaller version of the tracking device the county will have in place, they welcome the additional protection the county program will offer.
“We live right near Union County,†he said. “Without Middlesex County having their own alarm system, Union County won’t get involved.
Their son takes off about once every two months now, Sidrer said.
“It used to be every chance he got when he was younger,†he said. “He’s getting faster and we’re getting older. It’s getting a little more difficult.â€
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Various Articles : The Age of Autism: The epidemic debate
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Posted by sylvia on Friday, September 30, 2005 (10:38:03)
ScienceDaily August 2005
By Dan Olmsted
Monday's column featured a letter from Kendra Pettengill of Roseburg, Ore., who challenged the idea that the huge increase in autism diagnoses over the past decade can be explained by better diagnosis. In fact, she said, something has happened to trigger an epidemic of autism in America's children.
This column features some of the wide range of replies we received.
You wonder where the adult autistics are. Well, one repairs our computer systems. He's in his fifties, self-employed, and was diagnosed as possibly schizophrenic in the 1950s.
Another, my husband, is self-employed as a writer. A sister-in-law is an archivist and research librarian. A brother-in-law is an engineer, working on government contracts. My grandfather didn't speak until he was 5. He grew up and became a carpenter.
In the youngest generation of our family we have several diagnosed autistics and several who are just under the radar. I'm not even mentioning those who have perfect pitch and have been accomplished musicians since very young ages. And I'm not mentioning the young accomplished artists, though they give pause to think.
Autistics have always been part of the population. You're not looking in the right places, that's all.
I have an 11-year-old daughter, diagnosed with PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified), and even though I am not a scientist I do not believe this rise in autism cases is because of better diagnostics. I believe it is a combination of environmental factors that have taken place now these last 30-plus years.
One idea is to interview people who have been in the child-care business for the last 30 years. It would be interesting to get their observations. I say this because our pre-school teacher, who has remained a friend through the years, would just shake her head and tell me, "I don't know what's going on, but when I started my pre-school we never had kids with problems and now every year I see more and more kids coming in that I have to refer the parents for testing."
Very interesting, huh?
I am an 18-year-old with Asperger's Syndrome, and this is my first time writing a reply to an article like this. I went undiagnosed for a large portion of my life, struggling with many things such as social interaction and sensory issues, and not knowing why.
True, I am not on the severe end of the autism spectrum, but it does have a significant impact on my life. I am sure that I would not have been diagnosed several years ago, and that people like me who are able to function fairly well are being diagnosed more and more due to a better understanding of the lighter end of the autism spectrum. So I would say that a rise in awareness has greatly contributed to the increase in diagnoses.
The sentence "No child with autism ever went undiagnosed" is not true. I, along with many other autistics, went undiagnosed for a long time. In the past, many more severely autistic people were probably misdiagnosed.
For anyone who is interested in reading more from the perspective of adult autistics (we do exist!), I would highly recommend this website. It has many articles, written by people all over the spectrum: www.autistics.org
I just read your excerpts of Kendra Pettengill's comments and I agree with her completely. I never even heard of autism when I was growing up. My 11-year-old was diagnosed with autism eight years ago. When I am with him in public it is rare that I do not get someone telling me about their autistic child, grandchild, niece, nephew or child of a good friend.
These are strangers who know in an instant that my son has autism, as I do when I see a child on the spectrum. These children could not possibly be "missed" or misdiagnosed. How many 11-year-olds communicate with grunts and babble like infants? How many toddlers hit themselves repeatedly or fail to react to the sound of a metal pot being banged next to their head but run across the house when the Barney tape starts?
My husband and I started a school for children with autism since we could not find a good program. We get desperate calls everyday. If there were so many autistic kids before, they must have been locked up in closets! No, it is just our government that is hiding in the closet, afraid to face what they have done.
Apparently, Ms. Pettengill thinks I don't exist. She declares, in no uncertain terms, that no autistic has ever gone undiagnosed, in any time, in any place, ever.
Well, I am sorry to disappoint her, but I do exist, and so do a lot of others like me. I am autistic, and I was not diagnosed as such until I was an adult. I didn't speak at two years of age, and when I did begin to talk, it was echolalic. I persistently rocked, flapped, walked on toes, and avoided contact with other kids. I spun any object I could get ahold of.
My mother knew she had an unusual child, but she wasn't so horrified by the prospect of me not being normal that she ran right out and had me evaluated. She figured out how to relate to me, and she parented me. I learned and I developed.
I still flap, I still rock, I still toe-walk, and I still avoid social contact with others. I have obsessive interests, and I have a good deal of difficulty dealing with people. I can't handle many noises or places that are visually busy. I have virtually no ability to interpret body language or other nonverbal cues. Perhaps this is why the University of Pittsburgh Medical Center Autism Research Program diagnosed me as autistic in 2002, with full knowledge that I was undiagnosed well into adulthood.
When I was young in the early 1970s, autism was not well known. Many autistics my age that were evaluated were given diagnoses like "childhood schizophrenia" or "mentally retarded."
Being diagnosed as autistic as an adult is a lot more common than you might think. I know several autistic adults who were not diagnosed until adulthood (and I am not talking about those that were diagnosed with Asperger's Syndrome -- I mean autism). Ms. Pettengill may deny that we're autistic, but we have the official diagnoses that say we are. I have no doubt that any of us, if we were infants brought in for evaluation today, would be diagnosed as autistic.
We're here, whether people want to deny that we are what we are or not.
E-mail: dolmsted@upi.com
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