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AWARENESS

* Secret of a Punk Rocker's Cool Persona

* My Son Was Locked Out Of Society

* Small Boy Sets Down Road To Healing

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* Reader's Posts

Secret of a Punk Rocker's Cool Persona

[By Helen Rumbelow. Another in a series of articles in the Times, UK spotlighting autism, entitled "The Times Christmas Appeal" for the benefit of UK's National Autistic Society.

[The article sub-headline is "Vacant' musician was autistic but did not know it." This may be a case of the debilitating, but not disabling Shadow Aspergers. –LS.]

Ian Stewart never celebrates “personal things” such as birthdays, but he does mark June 15 with a nice dinner and a bottle of wine.

That is the date on which the avant-garde composer’s autism was diagnosed, a date Stewart now commemorates more than any other because, as he says, “my life was changed completely”.

The clues were there in his work, a haunting brand of experimental electronica composed for concerts and contemporary dance performances, often based on unusual characters such as Martians or hermits. But for Stewart, it was away from the music that his problems began.

His school years were blighted by bullying and loneliness. “The school playground was like a battlefield, and the years at secondary school were the worst of my life,” he said. “I lived in a strange world, with no understanding of what was going on around me. It was like I was on the wrong planet. It was so difficult coping with everyday life, I spent so much time pushing everything away that I didn’t notice if I was in great pain.”

His speech was poor because he thought in intensely vivid images. “I’d go to speech therapy and try to learn to say ‘b is for butter’, but for two days afterwards the image of butter blocking up my throat made me so nauseated I couldn’t eat.”

It was not until his late teens, when he left Scotland for London and began playing in punk bands, that Stewart acquired any friends. “Then it was fashionable to look vacant and expressionless,” he said. “There is television footage of me in a band and at the time everyone said, ‘he’s the coolest one’, because I was standing apart staring into space. Now I look at it and see autism.”

It was another two decades of misery and social confusion before he came to terms with his autism and found the means to deal with it. A few days after seeing a television programme on the National Autistic Society he was performing at a concert when one of the other musicians asked him why he was wearing headphones. “I said, ‘standing at the back in the shadows wearing headphones suits my autistic personality’, and that’s when it just clicked.” Through the society’s helpline, Stewart, who is a member of Mensa, was able to talk to experts and get confirmation that he had Asperger’s syndrome, a type of autism affecting the highly intelligent. “The charity is essential. My life depended on it completely four years ago,” he said.

“It was amazing just to talk to someone who treated you as normal, but different, instead of being strange all the time. The transformation was enormous. I could start to relax, and my social skills got so much better once the charity told me about strategies to cope.”

People with autism often have an extraordinary affinity for music, from the severely autistic who cannot speak but are able to play complex pieces without a single wrong note, to some of the greatest composers who, some believe, suffered from Asperger’s syndrome. Music was Stewart’s lifeline from the age of five, when he began playing the piano.

“The reason a lot of people with autism are attracted to music is that it is a self-contained system, with no social variables,” he said. “It’s like mathematics, in that it requires immense technical skill plus creativity. But most people can’t see the beauty of mathematics, whereas they can share the beauty of music.

“Music also allows an autistic person to get the feeling of creating something with a group, while remaining on their own. People talk about the teamwork of orchestras but there is only ever one person playing the violin.”

For many severe autistics who cannot speak, music is the first step towards being able to communicate.

For Stewart, music was also a natural choice of career because it was a field that not only tolerated, but to some extent encouraged, his strange behaviour and his helplessness at social interaction.

“It was a lot easier for me because people in the business are tolerant of difference. Everything is a double-edged sword, and the things which harmed me may also have helped; because I see everything differently, people think I’m very original. I have an indifference to influence.”

Now, he says, he listens to music with an ear for the autistic elements in it. “Some of the greatest rock songs express an autistic perception, about the inability to communicate. My favourite is Strawberry Fields Forever.”

What Stewart would most like to see is for teachers and doctors to be made more aware of autism, so that they are more able to diagnose it at an early stage.

“Early diagnosis would have stopped a lot of the suffering I went through. It is essential that children with autism are caught early so they can start learning strategies of how to cope.”

Children with autism respond extremely well to music, and some schools run by the National Autistic Society have music therapy facilities. A music therapy room costs £3,000 to establish; a gift of £50 is enough to purchase an instrument for the society.

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My Son Was Locked Out Of Society

Angela Browning has spent Christmas working on her book about life with Robin, her younger son. After her years of holding forth at the Tory dispatch box as a junior minister, she has flung herself into the cause of young people such as Robin. Her aim is to improve support and services for over-18s with Asperger’s syndrome.

Before he was two, Mrs Browning noticed that Robin seemed unaware of other people. He did not smile on demand. He was an intelligent, hyperactive, anxious boy, who sat on the sidelines and could not defend himself against school bullies. But if given the date you were born, he could tell you what day of the week it was. He memorised the national railway timetable. For years Mrs Browning thought he might be schizophrenic. Then, when he was 19, Asperger’s syndrome was diagnosed.

This was a relief, but also death to hope. The Brownings had always assumed that he might one day become normal. “Because they are so capable, Asperger children grow up thinking they might one day make friends, and be employed,” she said. “Gradually they realise this won’t happen: it is a lifelong condition. So, psychologically, for the young adult the diagnosis can be a tremendous blow.

“Anyone diagnosed in childhood will have the advantage of growing up aware of their condition. Some even become quite assertive and positive about it.”

One specialist — out of a dozen — wrote “infantile autism” on Robin’s records when he was four, but the Brownings were never told. (Some professionals believe it is wrong to label a child.) Only when Robin could not cope with college was the illness diagnosed. Mrs Browning, then a new recruit to Parliament, found that there was no provision for him. Her husband, David, gave up his accountancy to become her researcher and Robin’s carer.

“But,” Mrs Browning said, “the statutory services fail to deliver, because ‘learning difficulties’ applies only to people with an IQ of under 70. Asperger’s people, though often of above-average intelligence, need support — but they have no visible need, no wheelchair, no white stick. Most live at home with increasingly elderly parents, with all that entails in isolation and loneliness.

“At first sight on a good day they seem able to participate in life, but the condition is an iceberg, two-thirds below the surface.”

At times, Mrs Browning admitted, she had shed tears of despair.

The year 1997 was a turning point. In the election, Mrs Browning’s majority plummeted from 11,000 to 1,600. Floods in Devon drove the Brownings out of their home for five months. The upheaval triggered a crisis in Robin. “Stability and continuity is at the heart of their life,” she said. He had panic attacks about the floods.

Eventually Mrs Browning persuaded the county council to find him a home. “As a pretty assertive MP, I had to battle with the system for my son, so how difficult must other people find it?”

So, at the age of 26, Robin moved to a flat in Dorset with a “care package”, a support team who come in for 40 hours a week, giving him a stable routine and enabling him to take a bus to shop, and to cook for himself. He studies languages, 16 at a time. He reads factual books, timetables and charts. “Robin is on the path to a degree of independence,” she said. “What still haunts us is, what will happen when we are no longer around to help him?”

In the crisis year, Angela Browning’s dark-brown hair, turning grey, became blonde, so that she resembles a softer Margaret Thatcher. “I said blondes have more fun and now Ann Widdecombe has copied me and she says the same.” At 55 she has huge vitality. She speaks out for the National Autistic Society, and applauds the Times appeal for the society and its sterling work in improving diagnosis, employment and advocacy services for the autistic. “There are many Robins around the country and in many areas there is no support for them,” she said.

“Since Asperger identified the condition in 1944, society has changed. Even in the most basic jobs, employers insist on ‘communications skills’. Only 12 per cent of autistic people have jobs: but with the right support, such as the NAS’s Prospect scheme, their difficulties are not insurmountable.

“The Asperger group are desperate to be part of society, to communicate. When this is denied them, they commonly succumb to depression in the teens and twenties, and the suicide rate is high.

“Sometimes, because of their challenging behaviour they can be sectioned under the Mental Health Act or given inappropriate medication, which triggers an appalling downward spiral that’s hard to pull back from.”

The advocacy service she recommends would cover diagnosis, befriending, employment and legal support. Befriending involves a volunteer in the same age group going out for a drink with the Asperger’s person every week. “The befriender is taught how to cope with strange or ritualistic behaviour. It’s a simple, inexpensive, but effective scheme.

“I’m sure if I said this in the House I would be derided. But it won’t cost much. Whereas chronic social isolation can cause mental breakdown, which becomes vastly more expensive.”

For many years Mrs Browning has kept Robin from media exposure. Now she feels the time has come to air the problems he shares with thousands of others. Her book, written from the heart, and still seeking a publisher, will be called How High Is Heaven? a typical autistic child’s question. Robin asked it often, expecting an answer in exact feet and inches.

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* * *

Small Boy Sets Down Road To Healing

The 32 1/2-foot skid mark is still there, left by the school bus that ran over 8-year-old Garrett Cox outside his Cherry Drive home more than a month ago.

The driver didn't see him crossing the street on his Little Tykes tractor.

Now 9, and after 32 days at Strong Memorial Hospital, the boy passes much of each day in another hospital bed -- this one at home, beneath the living-room window. He lost his right leg below the knee. His left leg is covered in pins, skin grafts and a telescopic-looking metal bar called an external fixator, which holds together his femur and tibia.

Garrett, who has had a seizure disorder and mild autism since birth, doesn't talk much about Nov. 16. He just tries to figure out ways to resume the life he had before. "It's almost in some ways a blessing for him," his mom, Lisa, an obstetric nurse, said of the challenges he has always faced. "He's used to adversity. He doesn't ask 'Why me?' He just wants to know, 'How can I?' He's incredibly tough. We end up feeling like, 'Gee, we can't wimp out.' "

Especially when she and her husband, Jerry, a senior engineer at Xerox Corp., think about all the community has done to help.

Neighbors painted Garrett's bedroom while he was in the hospital and took turns caring for his brother, 5-year-old Connor. Because regular clothes don't fit over the metal pins in Garrett's left leg, one friend bought breakaway pants and another replaced the seam in a pair of boxer shorts with Velcro. Relatives held a bake sale, raising $600 to start a supplemental trust in Garrett's name that will help with medical bills and related expenses that insurance doesn't cover. The list goes on.

At first, the Coxes were uncomfortable with fund-raising drives. Then reality hit. Two adults are needed to hold Garrett still while he gets his injections or to take him to the bathroom, which is on the second floor. And neither of their cars accommodates him.

Of course, Garrett gets frustrated. He's often in pain, and he has spent hours telling his parents, "I'm angry. I'm angry. I'm angry."

"As tough a kid as he is, it's bound to come out," Lisa Cox said.

Other times, Garrett's will-power is stronger than anyone expects. For instance, on Christmas Eve, his parents found him sitting on the edge of his bed, eyeing a toy train on the dresser across the room. He'd look at the train, then look at his legs. Back and forth, wondering how to get from here to there.

And during his second day in the hospital, Garrett, whose fascination with trains shows on every surface in his bedroom, responded for the first time when his one-on-one aide from school brought him The Little Engine That Could. Despite being pumped full of medication and lying flat on his back, he helped hold the book with swollen hands and moved his finger when it was time to turn the page.

"Every now and then, you thought he was falling asleep and you'd stop reading," said Eileen Lamb, 53, who was assigned this fall to Garrett, a student at Quest Elementary School. "Then he'd move or do something and you knew he was still in there."

Garrett's recovery will be long. If all goes well, he may be fitted for a prosthetic foot for his right leg in about a month. But he will face surgeries on his left leg until he stops growing -- at least 10 more years.

In the meantime, he is learning to transfer himself from his bed to his wheelchair without help -- well, maybe a little from his stuffed dinosaur, Barney -- and how to steer the chair without hitting the family dog.

Garrett's parents hope that when he heals a bit more, they can help him sled like other kids.

"We just try to make things as normal as abnormal can be," Lisa Cox said.

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Partial Scholarships Available For Bradstreet Seminar in California

A limited number of partial scholarships have become available for parents who wish to attend the ICDRC Open Windows Essential Training seminar in Anaheim, California at the Disneyland Resort January 11 and 12, 2002.

Open Windows Essential Training is the one-of-a-kind, two-day course that teaches how to integrate medical, behavioral, and nutritional treatment options for children with autism. Lecturers include Dr. Jeff Bradstreet, Dr. Jerry Kartzinel, Dr. Andrew Wakefield and Stephen Shore.

Donations to the International Child Development Resource Center this year exceeded expectations, allowing for this opportunity for parents to attend who otherwise could not afford this comprehensive integrated training course. If you know a parent who cannot attend because of their financial situation, please have them call 321-953-0278 and ask for Emma.

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Reader's Posts

I am considering a move to place my son in the Irvine, Ca. school district. We have heard it is particularly effective in educating ASD children. Anyone with personal info. or experience would be appreciated. cagne@home.com

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Functioning Autism (HFA).8~) I'm 22 from Michigan and I hope to see you

join soon.8~) ~*Silly*~ 8~

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I would like to plan a vacation for my family. We have 2 children, an 11 y.o. daughter and a 10 y.o. son with autism. Interests include snow skiing, climbing, and water activities (fresh water). Looking for places that have trained certified staff, guides and access to modern conveniences. Please

share your experiences and contacts with me. MellodyPanzer@hotmail.com

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