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News- Page 10
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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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Various Articles : 'Cheap' care offer angers mother
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Posted by sylvia on Wednesday, November 09, 2005 (10:57:01)
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 (10:26:42)
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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