"Healing Autism: No Finer a Cause on the Planet" ______________________________________________________

TREATMENT

* Nature's Notes Soothe Autism

* Irish Autistic Twins Doing Well in U.S.

RESEARCH

* Marcel Just: Discovering Why The Brain Can't Do Two Things At Once

* Reader's Posts

Nature's Notes Soothe Autism

Rosemarie Mason is bringing up three autistic sons. She tells how sound therapy has calmed their manic and often frightening behaviour

Despite the countless family snaps on the walls of her three sons as babies, Rosemarie Mason does not have golden memories of their childhood. Instead, she and her two elder daughters, now teenagers, talk about it with pain. “It was like a horror movie,” she says quietly.

Many families sink under the strain of having one autistic child. Rosemarie has three autistic sons.

She sits in the living room of their narrow terraced house in Ilford, Essex, surrounded by three giant fish tanks. They started with a goldfish in a bowl, but one of the first signs that their youngest son was aware of the world was when he noted: “The fish has died.” They decided to get a lot more fish.

Rosemarie gave up her job as an accountant to have a big family with Les, her computer consultant husband. First came Kate, now 16, then Niamh, 14, and then the big surprise of twins, Sean and Eoin, 13 years ago.

When Micheal arrived two years later, their happiness seemed complete. But at around that time an awful change happened in her angelic, blond identical twins.

“They went very, very silent, except for these horrible animal noises,” she says. “They were guttural sounds. It was like the sound of insanity, quite terrifying. They stopped sleeping, and instead we would hear manic laughter from their room.”

The other sounds coming from the nursery were huge bangs when Eoin unscrewed all the screws to his cot and fell to the floor, and the screams when Sean would attack his brother and cover him in bite marks.

“Soon we stopped being able to go out. Kind-looking old women would come up to me and tell me they should be locked in a cage.”

Pretty soon, that is what happened to the Mason family. Unable to leave the house because of the boys, Rosemarie and Les felt isolated, in despair, and took it out on each other. Every hour came another crisis.

The twins’ elderly grandmother would often go home with a black eye, while Rosemarie became practised at removing her sons’ teeth from her neck.

They took to locking the boys’ bedroom door to keep them safe at night, a practice about which Kate now says she has nightmares.

Once, Rosemarie had barricaded the boys in the living room with baby gates and turned to tend to Micheal, who had to be kept in a playpen to protect him from his brothers.

“I heard a noise, turned and saw they had pushed up a little chair to get over the gate, unlocked the front door and were racing across the park,” she says. “Looking back, it was so difficult. I just don’t know how we survived.”

The conversation pauses, and I ask who in the family was the most scared.

She gives a surprising answer.

“The twins were. They always looked absolutely terrified. Not long ago, Eoin described the park incident. He said, ‘we had to go, we were scared’.

“All that time I kept telling people they looked frightened, and now he can confirm it.”

With hindsight, Rosemarie knows that the way autism wired their brains made them feel completely isolated — in a “foreign world”.

Their lashing out, she says, was frustration at not being able to communicate; their tantrums were panic attacks, and they bolted out of terror.

“They didn’t mean what they did. They loved us, but they didn’t know how to show it. Nothing made sense to them, lights and noise were torture. It’s how people react under those conditions.”

But it took more than three years of this before they got a diagnosis. First the doctors told them it was “twin syndrome”, then that the twins were retarded. Finally, at the age of five, they were sent to a psychiatric hospital for tests.

“The doctor said, ‘They’re very bright, but they’re autistic.’ Me and Les looked at each other and said, ‘Great! What’s that?’ ” For some families the diagnosis is a devastating blow, but for Rosemarie and Les “it was the best day ever. At last we knew who our boys were.”

That happiness was short-lived when the hospital asked for Micheal, then three, to come in for testing three months later. It is known that genes are a factor in autism, but to have more than one child with the condition is extremely rare.

“We had all the guilt feelings. What had we done wrong? We always thought Micheal was going to be the easy one, but it wasn’t to be.”

A turning point came when the family discovered Auditory Integration Training, a type of sound therapy that had hugely beneficial results for the boys.

“My children hear better than us — they are more sensitive to sound,” explains Rosemarie. “So noise can be very painful for them and they can seem to ‘shut down’ if there is going to be a noise that will hurt them.

“But after AIT, they slept, which was phenomenal. Sean, who has the most sensory difficulties, was suddenly alive. His eyes opened — he used to squint — and he stood taller.

“Eoin was not processing language as quickly as we do, so conversations were stilted. But after AIT they started flowing.

“The twins were starting new schools, which went quite smoothly, and Micheal’s language matured. It’s the treatment that has made the biggest difference.”

AIT treatment involves listening to modulated music or the sounds of nature for an hour a day for ten consecutive days. The sounds cover all frequencies and stimulate the ear and hearing apparatus. Rosemarie has trained herself to conduct the treatment, which they repeat every 18 months or so.

“It’s not a cure, but it gives the kids a big boost — which then needs to be worked on,” she says.

The family often talk, halfseriously, of the three members with autism moving in together when they leave home. Sean could do the cooking, which he loves, while the other two would go to work.

The momentary lull in the Masons’ hectic day is over and the children start to come home from school.

First is Kate, bringing with her Sean from his specialist autistic school, where she is doing work experience for her chosen career in special education.

Sean knows only a few words, but expresses “hello” with his eyes before turning on his favourite Spice Girls track to full volume on the stereo.

“Life has always been much harder for Sean,” says Rosemarie.

“People say he has the most severe autism of them all, but he is probably the most in tune with people’s emotions. Sometimes he wants to cry, and you know he is just so sad.”

Eoin learnt to talk and eventually entered mainstream school with a support worker. Micheal, who had much earlier treatment, followed Eoin.

Mainstream school is tiring for the boys, says their mother, because although they excel academically, they constantly have to “pretend to be normal”.

How are they different from their classmates? “They’re nicer,” she replies. “A few years ago, Eoin asked me if we could buy a cure for autism in Sainsbury’s. He used not to tell people he had a twin. Now he does. “But we will never know what could have been if Sean had not been diagnosed so late.”

* * *

Irish Autistic Twins Doing Well in U.S.

Beautiful autistic twin sisters who won the hearts of thousands as they embarked from Waterford in Ireland, on a transatlantic voyage of self-discovery last June will probably remain Stateside, where they are progressing well, until September of next year.

Tara and Etain Fitzgerald, from Kilmeaden, arrived in San Francisco on June 4 last to undertake an intensive educational intervention programme known as ABA - Applied Behaviour Analysis - which is hugely beneficial to children with autism. It was intended that they would stay, along with parents Michael and Niamh and brother Shane, for a minimum of three months, but thanks in large part to an extraordinary response to a support fund launched in this newspaper, they can now avail of the very best therapy for a much longer period. For that, Michael and Niamh are eternally grateful to the people of Waterford and Kilkenny and beyond, who contributed about £110,000 [$184,000 €160,000] to the fund, more than twice the original target.

No miracles

Dad Michael, updating the situation regarding the twins, reported this week that they were making definite, though slow progress. "When we came out we were almost expecting miracles, but in retrospect that was totally unrealistic", he said. Still, the six-year-olds - their birthday was on November 19 - can now do several simple things which represent major forward steps. They are toilet trained, for instance, and are almost able to dress and undress independently. They can also switch on electric lights, they show far more interest in their surroundings and, all in all, are far more self-sufficient than in the past. Grandparents Sean and Phyllis Williams, from Kilmacow, have just returned home after spending a couple of weeks with them and the twins displayed a new found curiosity in the Christmas presents they brought. "In the past there would just have been no response", said Michael.

Brighter future

The fear, if they were to return home in the near future, would be that the girls would regress. So instead the plan is to stay on for another nine months, persevere with the programme and give the children the chance to develop as much as possible. They attend a local school, where they get specialist attention each morning and receive intensive, one-on-one therapy in the afternoons from highly experienced speech and occupational therapists.

"It is highly satisfying for us to see the twins do things and respond to situations in a manner we could never have dreamt of without the special help they are getting", commented Michael, who is working to support the family so that the money raised at home can all go towards the girls' needs.

Young teenager Shane, by the way, has settled into school locally, but misses his friends from St. Declan's in Kilmacthomas and is looking forward to rejoining them next September. Michael and Niamh, similarly, will be delighted to return home at that stage with their lovely little girls whose future now looks an awful lot brighter.

* * *

Marcel Just: Discovering Why The Brain Can't Do Two Things At Once

The irresistible question for Carnegie Mellon University brain researcher Marcel Just is: How do we get a human mind and a human being out of a brain?

"The competing one, of course, is genetic control of humanity, but this one, getting mind out of brain -- some call it the embodiment of thought -- it's a wonderful challenge."

From that reference point, Just spins all sorts of research, including the dual task performance study that grabbed the world's attention this year. After monitoring brain activity with functional magnetic resonance imaging, Just and colleagues concluded that people can't effectively drive a vehicle and talk on a cell phone, or with a passenger, at the same time.

The brain, it seems, has its limits.

The findings interested many, including Bob and Jeff, radio hosts in Sydney, Australia; legislators and police nationwide; great numbers of science writers; the Discovery Channel, which aired a 15-minute special; CBS News anchor Dan Rather, whose report worked its way into Just's presentations; and the legislator who authored New York's new "hands free" cell phone law.

"I've never done this many interviews in my life," Just said.

Among the many serious topics tackled at CMU's Center for Cognitive Brain Imaging, where Just serves as director, include what happens in old age, education processes, neurological disease and mental illness, such as the underpinnings of autism.

Just's compelling desire to unlock the secrets of the brain evolved from a childhood love of math, which he found elegant and beautiful, but divorced from issues he cared about.

"People are ultimately the most interesting things to come to understand," he said.

Just has passed his love of science to sons Allan, 18, a freshman in environmental sciences at Brown University, and Adam, 23, a computer science graduate who works for Ericsson in San Diego.

Outside the lab, his interests are varied. Inspired by the guitar Adam left behind in their Squirrel Hill home, Just has begun to teach himself to play while fantasizing that he is Kris Kristofferson. Just is an avid cyclist and a regular on the "spectacularly beautiful" Youghiogheny River Trail, where he thinks contemplatively and communes with nature.

In April, Just, 54, will co-direct the Brain Imaging Institute, a joint effort of CMU and the University of Pittsburgh, funded with $3 million from the National Science Foundation.

"This is really the frontier in science," Just said. "It's glorious, it's inspiring, and I feel tremendously privileged to earn my living this way." _____________________________________________________________

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Reader's Posts

I will appear on "Real Life"--CN8 TV--on Jan. 8th at 6:00 PM discussing my son and our book, "Breaking Autism's Barriers:A Father's Story"--Bill Davis

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Hello--has anyone heard of a program for "signing" for an autistic child? Maybe someone knows of someone who has had the signing training and the results. Any information would be greatly appreciated. Patty Palmer Palmer@Foothill.net

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A friend of our family's nephew, 21, who'll attend Bethany college in Scotts Valley, CA, is looking to work with children on the Autism spectrum disoreder in their home programs. He'll either work for private pay or through an agency, and needs training, but has experience teaching special ed kids. He'll work in San Jose, Santa Cruz, or anywhere in between within reasonable driving distance. He'll be ready in Feb. Tina M. Hendrix CureNIDS2000@aol.com

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I am a student in Cyprus, doing my final year on a BA (Hons) course on Graphic Design. My major project deals with an advertising campaign on autism awareness. I would greatly appreciate it if anyone could send me some leaflets or information on autism and your campaigns. I am trying to base my idea on a positive note, to bring to peoples attention that autistic children are special and should not be looked down on, only loved and appreciated. Georgia Piponides jorja@cytanet.com.cy

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