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Archive for January 22nd, 2011

 Bridging the Gap

Imagine if non-autistics or neurotypicals were the minority.

Imagine a world where Aspergers was the norm, and non-autistics or neurotypicals were the minority. Let’s try it: Those who feel the need to constantly be with a variety of friends are considered fickle. Those with no propensity for computers and science are called geeks. Those with no special interest are thought to be ungrounded and lost. Those without obsessive focus have to take classes to cultivate it.

Those who insist on saying ‘have a nice day’ and other polite exchanges of fairly empty niceties are taught to be honest and say what they think. People who go to shake hands are simply thought unhygienic. And of course, you would never be expected to hug someone just because they shared an ancestor or a common acquaintance.

Teens who live for the mall are not as cool as those who read, write, draw, invent and play instruments all day. People who feel the need to dress like others are conformist and unimaginative. Girls who spend hours a day straightening their hair are recommended for counseling. People who never rock or squeal in public are considered repressed. People who talk about what other people are up to are gossips, while those who monologue are fountains of knowledge to be shared by anyone who cares to listen.

Read in Full:  http://www.psychologytoday.com/blog/aspergirls/201012/imagine-world-where-aspergers-was-the-norm



 

While most teenagers struggle to get out of bed in a morning, Louisa Ball might take 10 days to fully wake from her slumber, due to a very rare neurological disorder. So what’s it like living with Kleine-Levin Syndrome?

Louisa has slept through holidays, friends’ birthdays and half of her GCSEs.

In 2008, aged 14, she had been suffering from flu-like symptoms. She was at her school in Sussex when she started nodding off in class and behaving strangely.

“I didn’t know what I was doing, what I was saying, everyone thought ‘hey this isn’t right,'” she recalls.

“I was hallucinating and after that I don’t remember anything. All of a sudden it just went blank and I just slept for 10 days. I woke up and I was fine again.”

Her parents Rick and Lottie watched their daughter becoming fidgety and with unusual facial expressions as she sank into sleep. The first time was a frightening experience for them, although Louisa herself says she wasn’t scared by the episode, more puzzled.

“It was really weird, no one knew what was wrong, we just thought it wasn’t going to happen again. And then four weeks later it happened again.”

She was finally diagnosed with Kleine-Levin Syndrome (KLS). There is no known cause or cure but Louisa says it was good to know what it was and that it wasn’t life threatening.

The average time it takes to diagnose the condition is four years, because there is no test and so it requires a process of elimination of other disorders.

The disease was named after Willi Kleine, a neurologist from Frankfurt, and Max Levin, a psychiatrist from New York, who identified patients with similar symptoms in 1925 and 1936.

Louisa is unusual as KLS usually affects teenage boys, who can also exhibit hypersexuality and inappropriate behaviour.

As well as excessive sleeping, symptoms include behaviour changes, irritability, feeling in a dream-like state and binge eating, symptoms that can be mistaken for normal teenage behaviour. There are no drugs that have conclusively shown to alleviate symptoms.

‘No dreams’

Louisa Ball

Louisa was relieved not to miss her school prom

People with the sleep disorder narcolepsy fall asleep immediately, but people with KLS might sleep more and more over a number of days before falling into sleep mode.

Louisa says she remembers very little when she wakes up from an episode: “It’s just blank – no dreams. Now I’ll remember a lot more that’s gone on. Before I wouldn’t remember anything at all. My dad thinks my brain is learning to cope with it more.”

So how do you deal with a disorder that takes over your life so much?

It nearly ruined Louisa’s career ambitions, because she slept through most of her GCSEs but her college allowed her to enrol and she is studying sport performance and excellence, with dreams of being a dancer.

Read in Full(Includes Video):  http://www.bbc.co.uk/news/magazine-11897472



 

ScienceDaily (Dec. 7, 2010) — We commonly think of sleep as a healing process that melts away the stresses of the day, preparing us to deal with new challenges. Research has also shown that sleep plays a crucial role in the development of memories.

An important component of anxiety disorders, including posttraumatic stress disorder (PTSD), is the formulation of memories associated with fear.

Therefore, researchers decided to evaluate whether sleep deprivation after exposure to an aversive event might eliminate the associated fear, due to the lack of memory consolidation that would typically occur during sleep.

They evaluated healthy volunteers who were shown video clips of both safe driving and unexpected motor vehicle accidents. Half of the volunteers were then deprived of sleep while the other half received a normal night’s sleep.

Later testing sessions revealed that sleep deprivation eliminated the fear-associated memories through both fear recognition and physiological fear reactions, suggesting a possible therapy for individuals with PTSD or other anxiety disorders.

Dr. Kenichi Kuriyama, corresponding author, explained: “Sleep deprivation after exposure to a traumatic event, whether intentional or not, may help prevent PTSD. Our findings may help to clarify the functional role of acute insomnia and to develop a prophylactic strategy of sleep restriction for prevention of PTSD.”

Read in Full:  http://www.sciencedaily.com/releases/2010/12/101207112446.htm



 

Article Date: 07 Dec 2010 – 5:00 PST

A new intervention supporting the carers of people suffering anorexia nervosa is now being trialled at hospitals across the country.

The adult eating disorders team at South London and Maudsley (SLaM) NHS Foundation Trust, led by Prof. Janet Treasure, recognised that, while parents and partners are the most important source of help for someone with anorexia nervosa, the pressures of caring can lead to the formation of damaging patterns of behaviour. These behaviours cause distress to both parties – perpetuating anorexia nervosa symptoms and often requiring carers themselves to seek psychological treatment.

Expert Carers Helping Others (ECHO) is a guided self-help intervention that uses volunteer ‘coaches’ with direct experience of managing anorexia nervosa – either as carers whose children have recovered or are in recovery, or people who have recovered from the condition themselves – to optimise carers’ effectiveness in promoting recovery.

The volunteer ‘coaches’ have been trained in the new Maudsley Model and motivational interviewing techniques so they can offer telephone coaching sessions to carers across the country. The sessions aim to increase self-care in carers, encourage calm, compassionate communication and offer support managing difficult behaviours.

Professor Janet Treasure, director of the eating disorder service at SLAM, said: “Our coaches have had to work through their own difficult issues and do a tremendous job containing and channelling their experiences to help carers around the country. Most have had no professional training, but their experience is proving invaluable and motivates them to attend our training and coaching sessions. Their generosity of spirit and their quest for knowledge and skills is formidable”

The guided self-help intervention also includes a book (Skills Based Learning for Caring for a Loved One with an Eating Disorder) and 5 DVDs. The effectiveness of the intervention is being tested in a multi-site (15 inpatient units) study involving patients and carers from hospital units all around England.

One coach said: “Janet Treasure and her team helped me and my family turn things around when we were struggling with an eating disorder. I was pleased to train as a coach so I could give something back. The telephone coaching can be a real life line for carers struggling to cope with an eating disorder on their own.”

The new Maudsley Model is a development of the ‘Maudsley Model’ or ‘Maudsley Approach’ – a family therapy pioneered at the Maudsley Hospital in the 1980’s to treat anorexia nervosa in adolescents and now used across the world to treat a wide-range of mental health conditions. Family members and carers – most commonly parents and partners – are an important source of help for someone with anorexia nervosa where isolation is a key part of the problem. Over time, the Maudsley Hospital’s eating disorders team has used family therapy so successfully to treat adolescents suffering anorexia nervosa that it has reduced the need for people to go into hospital to around 20% of the national average.

The ECHO team is also setting up a new project to work with adolescent outpatients around the UK to expand the network of carers/ex-service users who are willing to give their time to help others. The team are working in partnership with BEAT on a project called Empowering parents so that this form of help will be available throughout the country.

The awards will be presented by Nick Hurd, Minister for Civil Society on Monday 6th December at the Houses of Parliament. And special thanks go to Gill Todd, Pam Macdonald , Dr Anna Crane and Grainne Smith who developed the curriculum, and training course.

Fact file

– 1 in 100 UK women aged between 15 and 30, suffer anorexia nervosa (Mind) Approx 11 people in 100,000 develop anorexia nervosa each year (Beat)
– 1-2% of young women are thought to be anorexic at any one time (Beat)
– About 1% of 16 to18 year olds have anorexia (Royal College of Psychiatrists)
– About 40% of people with anorexia recover completely, but around 30% of continue to experience the illness long-term (Royal College of Psychiatrists)
– Approximately 10% of cases of anorexia arise in men
– Around 5% of cases of anorexia will be fatal (Clinical Knowledge Summaries (CKS) Service)

Source:
South London and Maudsley NHS Foundation Trust

http://www.medicalnewstoday.com/articles/210506.php



 

By Daniel Tomasulo, Ph.D.

When I was 5 years old, my mother always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down ‘happy.’ They told me I didn’t understand the assignment, and I told them they didn’t understand life.
~ John Lennon

On Dec. 8th, 1980, I was in bed listening to the radio when suddenly, in a voice labored by heavy breathing and halting words, the disc jockey broke the news that John Lennon had been shot and killed in front of his New York City apartment building. The news ransacked my brain.

The Beatles weren’t just a rock band; they gave us an identity. Their songs weren’t simply catchy tunes or stray memorable lyrics. The music told us who we were. It pointed us in a whole new direction. The simplicity and clarity of their message pierced the fog of the Vietnam War, drugs, the environment, and politics. “Love is all you need” not only made sense, it gave us something to work toward.

Collectively the Beatles offered hope. But it was John Lennon who offered inspiration.

More than the assassination of John or Bobby Kennedy, or the shortened lives of Jim Morrison, Jimi Hendricks and Janis Joplin, Lennon’s tragedy undid us. “If you want to be a hero,” Lennon recommended, “then just follow me.” We did, and still do. How could we not follow him? We still wrestle with war, drugs, the environment, and politics. What argument exists against someone who insists we Give Peace a Chance?

But what type of childhood provides the creative drive to be belligerent for peace? As many psychologists might suspect, the answer lies with John’s mother.

The White Album (and if you don’t own it go out and buy it right now) included the first of two songs Lennon wrote about his mother, Julia Lennon. In favor of a more carefree life, she had given John to her sister Mary, and brother-in-law George Smith, to raise. Prior to this, stories from rock and rollers were about girlfriends and lovers. But this beautiful ballad was about John’s mother.

Here is an excerpt:

Her hair of floating sky is shimmering
Glimmering
In the sun

Julia
Julia
Morning moon
Touch me
So I sing a song of love
Julia

When I cannot sing my heart
I can only speak my mind
Julia
Julia
Sleeping sand
Silent cloud
Touch me
So I sing a song of love
Julia

Beautiful music; beautiful words. But the truth is John’s mother abandoned him, then was killed when he was 18; his father was absent throughout John’s childhood. Painful realities, but Lennon’s creative energy uniquely honed and focused these dynamics. His resilience, the love received from his aunt and uncle, and his creative talent came together to produce many songs about love and peace. Perhaps in “Julia,” we see the first creative effort to reconcile with his mother by attempting to transcend the pain; this was most likely a result of his venture into meditation. The lyrics and melody suggest that he may have been coping with the truth of his mother by detaching with love.

But there would be other ways of coping, alcohol and heroin among them.

Read in Full:  http://psychcentral.com/blog/archives/2010/12/07/john-lennon-psychodrama-of-a-gifted-child/



 

Monday, December 6, 2010  05:08 PM

AMC Theatres and the Autism Society will present the next Sensory Friendly Films presentation Dec. 11 at the AMC Lennox 24, 777 Kinnear Road.

“The Chronicles of Narnia: The Voyage of the Dawn Treader” will be screened at 11 a.m.

In order to provide a more accepting and comfortable setting for children with autism or other special needs, lights in the auditorium will be brought up and the sound turned down during this special presentation.

Read in Full:  http://www.thisweeknews.com/live/content/grandview/stories/2010/12/01/AMC-Lennox-to-screen-films-for-autistic-children-Dec-11.html?sid=104



 Giant's Causeway, Northern Ireland

Published on Tue Dec 07 17:15:38 GMT 2010

Autistic people will see services brought into the mainstream by changes to the way they are treated, it has been claimed.

Reforms would ensure that people with autism in Northern Ireland are included in disability legislation and that comprehensive services are provided to them and their families from their earliest years through the course of their lives on a cross-departmental basis.

Autism is a lifelong developmental disorder which affects the way a person communicates with other people. There are difficulties with the ability to understand and predict other people’s intentions and behaviour and to imagine situations outside of their own routines. This can be accompanied by a narrow repetitive range of activities.

SDLP MLA Dominic Bradley is piloting the Autism Bill Northern Ireland through the Assembly.

“The Bill, by giving recognition in law to the need for required cross departmental planning and buy-in, will make a real difference to families. This measure assures families that government recognises the lifelong and whole life commitment and reality of ASD (Autistic Spectrum Disorders), and gives assurance of the potential of service development in harsh economic times through shared funding initiatives across departments,” he said.

“It recognises that ASD is a shared responsibility within our community and that duplication and confusion can be addressed. It should help ensure that life transitions, uniquely distressing for individuals with Autism, can be better planned, resourced, and managed.”

There were 30,000 people with the disorder in 2007.

Mr Bradley chairs the all-party Assembly group on autism.

“The current programmes of care within the Department of Health are totally inadequate. The amendment to the Disability Discrimination Act in this bill will help to ensure that they will no longer suffer discrimination due to anomalies,” the Newry and Armagh MLA added.

“There is also evidence that some public bodies use the current inadequate definition in awarding benefits as Disability Living Allowance. Additionally, some pupils with autism are being punished for offending school discipline codes for behavioural reactions that are beyond their control.”

Read in Full:  http://www.worthingherald.co.uk/news/autism_services_to_be_reformed_1_1784640



 

By Paul Paterra, TRIBUNE-REVIEW
Monday, December 6, 2010

Tammi Bogan had tired of negative reactions toward her son, Seth, who is autistic.

Now she is telling his story — and that of her family — in a small book, “Remember the Hot Dog Bun.”

“Everything that was ever said to my son was negative,” said Bogan, of Fredericktown in Washington County. “It was disheartening, depressing. I just said, ‘I’m so sick of this. He’s a really cool kid. He’s just amazing the way he is.’ “

The book details Bogan’s journey through the world of autism and her quest to redefine the labels placed on Seth, who is 4. He started out as her foster son, and she and her husband, Bill, adopted him in 2008.

Seth started living with the Bogans two days after his birth, and Tammi quickly realized something wasn’t quite right.

“Seth was born addicted to drugs and alcohol,” Bogan said. “I took home this baby who was basically going through withdrawal. Not knowing that, I continued to listen to the crying and the throwing up and the shaking.”

Bogan said the baby was not affectionate and leaned toward violence, thrashing even as an infant.

“Every doctor we took him to didn’t seem to know what was going on,” Bogan said. “He went through MRIs and CAT scans, every test you could possibly imagine. They were still trying to figure out why he was so lethargic and why he was always screaming.”

Bogan said Seth’s birth mother eventually admitted to using “just about everything” during her pregnancy, including crack, heroin, marijuana and alcohol.

Many doctor visits followed. Therapists and representatives from youth service agencies were constant visitors to their home. The young boy took many medications.

“On top of everything else, he’s very allergic to everything,” Bogan said. “So he’s on a gluten-free, soy-free, milk-free diet.”

After years of watching Seth eat hot dogs sans buns, Bogan found a bun that was gluten-free. When Seth ate a hot dog on a bun for the first time, it was a turning point. And thus, the title of the book.

 

Tammi and Seth 

“At that moment when I saw him trying that bun, I realized we just take everything for granted,” Bogan said. “Just to see him be able to eat a hot dog on a bun, you have to step back and say, ‘I’m thankful for every little thing.’ Him eating a hot dog bun made me bawl my eyes out and write a book.”

Sharon Greene, senior director of Northwestern Human Services Autism Schools, said most people don’t know much about autism, and the initial diagnosis can frustrate parents.

“There’s a saying, ‘If you meet a child with autism, you’ve met a child with autism.’ Everybody is so different,” she said. “Everybody wants to find a cure. Kids with autism are so smart. That’s where the frustration comes in.”

Greene said a book like Bogan’s can be a helpful tool, especially for parents in similar situations.

“It helps them go through those stages of grieving,” Greene said. “With so many parents, when their child is diagnosed, they don’t know where to turn. There’s so many services out there, they don’t know where to go do.”

“Remember the Hot Dog Bun” was published by Tate Publishing and Enterprises and is available through bookstores nationwide.

Bogan hopes the book helps others.

“Don’t judge people’s children when you see them out,” Bogan said. “A lot of these children you think are bad are really misread or misunderstood because they haven’t had the help or intervention they need. … They have special gifts; you just have to find them.”

Bogan said Seth has progressed. The boy who doctors said would never walk or talk does both very well. He now sits on Bogan’s lap and she reads to him. He knows the “yellow” book is about him.

The journey she’s traveled has been trying at times, but Bogan said it’s one she wouldn’t hesitate to take again.

“I wouldn’t trade it for anything in the world,” she said. “He has defied everyone and mystified them. He ended up proving them wrong.

“I knew it was in there. He just needed someone to help him. … God meant for him to be with me, and we’re going to make the best of it.”

Source:  http://www.pittsburghlive.com/x/pittsburghtrib/s_712426.html



 davila-elementary-board-p

Brad Doherty/The Brownsville Herald

Rolando Davila,8, who attends Pullam Elementary, draws a series of characters on the board in his classroom on Thursday. Davila is very artistic and is autistic.



 

All this week the BBC has been highlighting issues affecting disabled people as part of a campaign called Access All Areas.

Among the topics covered have been technology, job rights and how stigmatised many disabled people can feel.

Hidden disabilities affect millions of peoples lives with on a daily basis, among them are bipolar disorder and autism.

The BBC’s Nick Higham reports.

Source/View Video 02:24):  http://www.bbc.co.uk/news/uk-11913526