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News- Page 24
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Various Articles : Parents of autistic kids fighting for acceptance
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Posted by Sylvia on Wednesday, June 02, 2004 (10:05:32)
The Buchan Observer 19/05/2004
By Leona Milne
AUTISM is one of the most complex biological disorders known to man and takes form in many different ways.
The concept of the autistic spectrum was developed to describe a range of individuals - children and adults of varying ability levels - who display particular difficulties in communication, social interaction and imagination.
These areas are commonly referred to as 'the triad of impairments'.
Because the disability isn't physical the symptoms of autism can be interpreted, by those who don't know, as a child misbehaving or a lack of discipline on the parents behalf.
But a group of Peterhead mothers whose children suffer from the disorder say they are fed up being stared at and are fighting for acceptance and understanding from others. They also want more help and support groups in the area.
On the outside, Debbie Stephen's four year-old son Leon is like any other little boy. But in 2001 he was diagnosed with autism.
Debbie says: "I don't think a mother or parent ever truly comes to terms with the diagnosis of their child. Leon was born 13 weeks premature and came into this world (two minutes apart) with his sisters Alex and Ellis. We were very much vigilant with the triplets development due to their extreme prematurity."
In June 2001 the triplets were given the MMR vaccination. Due to the ongoing speculation with the link between the MMR injection and autism Debbie sought professional advice, and was assured to go ahead with the immunisation.
She said: "To be absolutely honest I really had no reservations. When we look back at video footage Leon was certainly developing 'typically' and was reaching his appropriate milestones.
"It just seemed over that summer he became increasingly isolated and was in no way interested in his sisters and peers. He also seemed to have a total loss of eye contact. He wouldn't answer to his name and his behaviour seemed to change drastically."
Alarm bells started ringing with the Peterhead mother so she contacted a neonatoligist, who was also concerned.
Leon attended the Raeden Centre for one week's assessment and was diagnosed in February 2002 with autistic spectrum disorder (ASD). He was one of the youngest to be diagnosed at the centre.
Debbie and her husband Allan took part in an Early Bird Course for parents with newly-diagnosed autistic children, the aim of which was to educate parents about living with an autistic child.
In 1962 one child in 3000 was affected with autism, but in 1999 the number had risen to one in 150.
"The reality is that there is an upsurge in autism and it is indisputable," says Debbie.
"We have read every chapter in every book but nothing prepares parents for the day to day living. Leon has taught us everything we know about autism and it is very much a challenging journey but I can't imagine life any differently.
"Leon is Leon and we don't know any different. Early intervention is the secret and luckily we thought something was wrong early on."
At the age of four, Leon's vocabulary is limited to aabout 30 single words.
"We might never hear our son say mum, or I love you but thankfully Leon is very affectionate. He can display his love but many people with autism can't bear being touched or hugged because they're hyper-sensitive to noise, light, colours and touch. Everything is exaggerated to them.
"Autism for a child has been described in books as like being on drugs all the time - colours are much, much brighter and things are louder. Red can be like a blazing fire to someone with autism," said Debbie.
She says that when a child's disability isn't visible people don't judge the child if they are doing something out of the ordinary.
"On a day to day basis, because of Leon's unusual and eccentric behaviour, I'm constantly aware of disapproving looks and looks of distain. Most of the time children or adults with ASD have to have a coping strategy.
"That might be taking a dozen packets of cereal down from the shelf in a supermarket and perfectly lining them up in a row as a means of self soothing in an environment that may well feel very threatening - having a marked preference in routines and sameness can be comforting,' she explained.
She added: "I don't want people's sympathy, I just ask that people don't judge a book by its cover and they don't look at the parent in disgust. For all they know
that parent may not have had a sleep in three nights or may still be trying to cope with the fact that their child has autism."
Debbie says it is important to appreciate that, for much of their lives, people with autism are expected to cope in a world which they understand almost nothing of what is going on around them.
She said: "They are thrown into an ever-changing and unpredictable environment where they lack the rudimentary verbal skills necessary to make their needs known and where they have no access to the imaginative facilities that are so crucial for dealing effectively with anxiety, uncertainty and distress.
"It is hardly surprisingly, therefore, that from time to time they resort to behaviour that can be difficult for other people to deal with and understand. If you can imagine not being able to communicate or understand what's going on around you you would lash out too.
"The title of the book 'Oops, wrong planet' sums it up for Leon. Everything is alien to him. If Leon learns to do something at home he has to re-learn how to do the same task in a different environment.
"The only store I don't feel stressed in is Woolworths, which is Leon's firm favourite. All the staff are fantastic and I have never felt Leon stigmatised in any way. If he decides to rearrange the toys the staff help me rearrange them back," Debbie said.
Debbie says despite the difficult times she feels blessed to have such a special and clever little boy.
"We have been blessed with a very loving special child who is a wizard on the computer and is showing fantastic memory skills.
"He is doing really well at school with a fantastic teacher, whom he loves. I don't think Leon's autism as a burden - instead we try to turn negatives into positives. If Leon draws all over the walls we look at the fantastic picture he has drawn rather than the mess he has left the walls in. Every milestone Leon achieves is brilliant and I want to tell everyone about it.
"We want Leon to lead an independent life but accessing services such as occupational therapists and speech and language therapists can be impossible because there aren't any in Aberdeenshire. People don't recognise autism in this area.
"We are constantly up against red tape but you just have to battle on and try to fight for what you want. If folk are waiting for someone to knock on their door and offer them help well they will have a long wait."
Debbie and Allan are taking Leon to America in September to get medical intervention Stateside as they say they are getting nowhere in Britain.
"Autism is one of the most complex biological disorders, and as this is the start of 'Autism Awareness Week' hopefully in time there will be more acceptance and understanding.
"There is a support group at the carers centre in Peterhead which takes place on the first Monday evening of every month from 7pm to 9pm, where we laugh and cry. We have guest speakers from the likes of the Autism Advisory Service and we have a speaker on holistics therapies," said Debbie.
There is also a multisports session every Tuesday from 4.30pm to 6pm at the games hall in the community centre, where children and young adults can play basketball, and take part in team games and trampolening.
Every Thursday between 6pm and 8pm the Amazone soft play area is available.
Admission is free to children with special needs and their siblings, and an age restriction applies to the Amazone play area.
If readers have any enquiries phone Debbie 470585 or Kath 479130 for more information.
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Various Articles : Experts challenge autism 'myths'
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Posted by sylvia on Saturday, May 29, 2004 (00:42:40)
BBC Online 17/05/2004
Imagine what your life would be like if every day was a struggle to communicate and interact with everyone around you.
That is the reality for many people with autism, a developmental disability affecting social skills.
An international conference organised by Autism Cymru in Cardiff from Monday to Wednesday aims to explode the "myths" and increase awareness.
Autistic spectrum disorders are estimated to affect 20,000 people across Wales.
As well as having problems with social relationships, people with autism often prefer sameness, and have difficulties accepting changes to their routines.
Many of the traits of autism are also shared by Asperger's syndrome, although people with this condition are often "high-functioning", appearing to function normally most of the time.
Their condition only becomes apparent to others when placed in stressful situations, when they become anxious and distressed.
Mark Annis, an artist with Asperger's syndrome who will exhibit some of his work at the event, said many people with autism faced very difficult childhoods, and were bullied at school because they were different and did not fit into peer groups.
Mr Annis, 42, from Penarth, near Cardiff, said this hostility never stopped, and people with autism stay as "outsiders" in adult society.
"People tend to see us as abrupt people - rude or downright offensive at times - it is quite frightening," he said.
He believed a general lack of understanding of the condition saw autistic people demonised.
"I recently told a woman I was Asperger's - she was very offensive, she said I should be in psychiatric hospital.
"I have been spat at in the street, the attitude is so negative.
"Especially if you are a man on your own - it is fed by the paranoia of the stranger in the street.
Improved understanding
He argues that many people with Asperger's "can't live in a society like this".
"They are saying "I can't get a partner, get a proper peer group, get a circle of friends, or go out without risking being rebuffed all the time."
"I have friends who have Asperger's who have been traumatised by people's attitudes - one of them committed suicide."
He was classed "educationally subnormal" when at school.
"When I left school, my mum advised me, 'Don't come out - don't admit you are disabled, as they will probably have the police around'. I was advised to keep quiet.
"Today, there is improved understanding among people who are educated about Asperger's.
"But the other side - those who don't know - they are more hostile and more paranoid when they do find out.
"People with Asperger's are facing a really hard time to get the professions to explain to the general public, as well as the parents and guardians.
"There is still this perception, particularly in relation to parents and the professions, that people with Asperger's can't do much or are incapable of holding down a relationship, holding down a job or pursuing a talent or having a career.
"But we have so much to offer - it's a long process."
He believes people with autism should "try to be themselves".
"Not everything revolves around running businesses or being cool or trying to be life their peers - you have got to be an individual and develop your finer qualities, your talents and strengths.
But part of the problem for people with Asperger's syndrome is that they are high-functioning.
"At least if you are more severely autistic, people know and they don't take offence."
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Various Articles : Families with autistic adults need more help, says charity
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Posted by sylvia on Saturday, May 29, 2004 (00:37:01)
The Telegraph 17/05/2004
By Sarah Womack
The intense difficulties faced by parents of autistic children when their children become adults are highlighted today in a report.
The National Autistic Society said that for adults with autism there was no equivalent of the services available to some autistic children.
Many local authorities are also reluctant to support people with Autistic Spectrum Disorders (ASD), a range of social and communication disorders.
There are an estimated 500,000 people with ASD in Britain, of whom 320,000 are adults. Half of adults with ASD still live at home, with only six per cent in full-time employment although many could work with the right support.
While 70 per cent of parents feel their son or daughter would be unable to live independently, 65 per cent of ASD adults had not had a community care assessment and did not know the agencies that could help them.
"People with ASD continue to fall through the gaps between mental health and learning disability services," says the NAS report, A Place in Society. "Families are left in the dark about options that may be available and left with stark choices - for instance between an inappropriate residential service and keeping their adult child in the family home."
Society's awareness of autism is still low, particularly of adults with autism, and the nature of the disability is extremely complex.
The average age of children when they are diagnosed with autism is five and a half. For children with Asperger syndrome, a neurobiological disorder, it is 11.
ASD has been widely recognised only relatively recently. Asperger syndrome appeared in diagnostic manuals only in 1994.
A survey found that only 53 per cent of people with ASD who should have a "transition plan" for moving into adulthood, agreed with the family and health, education and social services officials, had one in place.
More than half of parents of 11- to 16-year-olds were not even aware of the transition plan for those 14 and over or what it meant.
The charity called for all relevant agencies to be given training in autism, with staff and money to support planning for people with ASD.
Gavin Owen, policy and campaigns officer for adults at the NAS, said: "Parents are not given advice on the possibilities about autism in adulthood, such as help into employment or shared accommodation in converted flats.
"A lot of people with ASD in their forties still live at home and parents worry because they are getting older and cannot look after them indefinitely."
He said the Commission for Social Care Inspection should investigate why social services were not participating in transition reviews.
He said there should be penalties for those social services departments which did not participate. "People in directly relevant services must have an understanding of autism," Mr Owen said.
"Local agencies such as careers advisers or housing agencies should also be able to tell people with ASD what their rights are. "Often in adulthood, the safety net drops away for adults with ASD in terms of social services and health care.
"Someone might have a paediatrician who knows about autism but when that person becomes an adult, they cannot find an adult psychiatrist or psychologist who understands their needs."
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Various Articles : Siblings have own needs
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Posted by sylvia on Friday, May 28, 2004 (23:52:06)
The Border Mail 12/05/2004
By Di Thomas
Parents of children with special needs and the childrens siblings need to be supported in order to strengthen the families in the long term.
Director of Siblings Australia Ms Kate Strohm, also the author of Siblings: Brothers and Sisters of Children with Special Needs, presented a workshop in Albury last night, focusing on emphasising to parents the importance of siblings within the family unit.
The workshop was part of a series organised by Cooinda Family Support Group as part of Autism Awareness Week and National Families Week.
Ms Strohm said historically, families and service providers were focused on the child with special needs rather than the needs of the parents or siblings.
“Siblings are often overlooked because their parents are stressed looking after the other child and the service providers dont pick up on the siblings needs,†she said.
“The child themselves cant say much because they are taught to feel they shouldnt be saying anything.
“One of the most important things is that the child gets support at this early stage.
“If you get in early you can strengthen the family to deal with problems a whole lot better.â€
Ms Strohm said she was involved in helping to strengthen families by working with siblings, parents and service providers.
“The things I talk about would fit any family regardless of whether they have a special needs child. Its about communication. Its about giving the siblings permission to say they have problems,†she said.
“A lot of grown-up siblings talk about having to walk on eggshells with their parents when they were younger.
“Often it is very hard for parents to hear their children talk about the other child.
“But its about helping everyone in the family to understand each others position and supporting that,†she said.
Ms Strohm said society often distanced itself from families with special needs.
Cooinda Family Support Group will host two autism-Asperger workshops at the Farmhouse Restaurant in Melbourne Rd, Wodonga, tomorrow and Friday.
The group holds an autism-Asperger syndrome support group each fortnight as well as weekly support programs for siblings.
For details, phone Ms. Sue Pringle at Cooinda on (02) 6056 4844
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Various Articles : Early Intervention Centre for Limerick children
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Posted by sylvia on Thursday, May 27, 2004 (13:09:26)
Limerick Post 09/05/2004
ENABLE Ireland is increasing its profile locally with the opening of its second service centre recently on the Dock Road. Formerly known as Cerebral Palsy Ireland, Enable Ireland’s new base at Castlemungret is an early intervention centre for children aged babies to six years and it services the Mid West, not just Limerick.
"We’re looking after up 120 children, and offer their carers respite services also,†explains John Sanders, PRO for the charity. "The children who attend us have different illnesses and some even have several. The principal difficulties are those of cerebral palsy, spina bifida and hydrocephalus, while our respite services deal mostly with children who have autismâ€.
The idea behind an early intervention centre is to provide as many therapy services as are useful to these children in their most formative years. Hopefully, intervening with physiotherapy, occupational therapy, speech and exercise training will enable the child to attend a mainstream school by the age of six or so.
"That’s our objective, to help the child as much as possible, teach them as much as they can learn so they become more independent,†John continues. "Many of our children will be able to attend mainstream schools on leaving us but not all obviously. Those children will go on to use the Enable Ireland service centre at Quin’s Cross in Mungretâ€.
A series of fundraising initiatives included a recent 60euro a plate fashion show take place in Milano’s Restaurant on Harveys’ Quay. Supporters of this charity for years, national manager Russell Bailey pulled out all the anti-pasti and wine corks imaginable in a lavish night. With 100 tickets sold, Faces Model Agency, a raffle and goody bags worth 75euro in vouchers ensured this hardworking adults and children’s charity was better off by the end of night.
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