In my work, I have been seeing an increase in Autism occurances - as has been reported in many studies, like this one from CDC, but I have also seen more incidences of non-verbal children in our schools. I am collabiorating more and more with our SLP's and EI/ECSE Specialists to develop AT supports and strategies. This past fall has been the busiest so far.
I was interested to see a link to an article about a poll by YouGov in the UK, that showed children are reaching the age of 3 without being able to say a word. It also showed that "boys are almost twice as likely to struggle to learn to speak than girls".



No Limits to Learning: Raise in Autism Rates and Non-verbal Rates will Impact AT and SLP Services

The world of autism often seems like a theater filled with people and deprived of oxygen—nearly any noise is treated like shouts of “fire.”

So the media covered the latest controversy—a video produced for Autism Speaks, the nation’s largest autism advocacy group – like any other episode in the decades-long saga to understand the mysterious disorder. But this debate differs fundamentally from those surrounding the role of vaccines or genetics in contributing to autism—those contest science, while this contests the core identity of what it means to live with autism




The Bi-College News Online » Blog Archive » What Does It Mean to “Be” Autism?

Can observing children using theWii help us learn more about their weaknesses and develop strategies to use the Wii to augment traditional therapy and educational practice?

My question at the top is quite a mouthful! We are struggling to get valid results from observing students using the Wii and find ways to use it to support their goals. They love to play the Wii and it can be a real motivating factor. Whether we are looking at social interaction and systems that students work in with autism, or orthopedic issues in motor integration and planning, our efforts are showing some positive results as we have used the Wii in several situations this fall.


No Limits to Learning: Wii Therapy: Findings in Motor Integration/planning and Sensory Systems

To the Editor:
Cumberland Times-News

I am writing, hoping you will help raise awareness about Rett Syndrome. It’s the leading cause of severe impairment in girls, yet the general public still doesn’t know about it. A baby girl is born every five hours with this debilitating disease.

Imagine: symptoms of autism, cerebral palsy, Parkinson’s, epilepsy and anxiety disorders ... all in one little girl.

Our family does not have to imagine this, we are living it. My 21-year-old daughter Amanda was diagnosed with Rett Syndrome in February 1991.

Rett Syndrome is the most physically disabling disorder of the autism-spectrum disorders.

However, it’s the only autism-spectrum disorder with a known genetic cause. Primarily affecting girls, Rett Syndrome often strikes just after they have learned to walk, speak few words, and begins to drag their development backward.

This debilitating syndrome includes symptoms seen in many other severe neurological and neuropsychiatric disorders on which Rett research may shed light.

These include many of the following: regression, loss of speech, motor control and functional hand use; orthopedic problems including scoliosis and osteopenia; impaired cardiac, circulatory and digestive functions; autonomic instability and sleep disturbances; many varieties of seizures, often untreatable; autistic behaviors and sensory issues; Parkinsonian tremors; dystonia; anxiety and apraxia.

Currently, there are no effective treatments for Rett Syndrome. Most girls survive into adulthood and require total, 24-hour care. As of now there is no cure.

But, by raising awareness and continuing to fund research projects, we may be able to make a difference in the lives of girls with Rett Syndrome, and their families.

In 2007 the journal Science published the work of Adrian Bird, Ph.D., demonstrating the reversal of Rett Syndrome in mature mouse models with late-stage disease.

Days away from death, these animals recovered normal function and became indistinguishable from healthy mice in a matter of weeks.

This singular achievement has catapulted Rett into new realms of possibility and positions Rett Syndrome to be the first curable childhood neurological disorder. Rett Syndrome, unlike so many disorders (autism, Alzheimer’s, Parkinson, MS, etc.) has unique advantages: a known cause (a gene, known as MECP2), excellent animal models that faithfully mimic the human disorder, the prospect of reversibility and fast-paced research progress in the last few years.

There are clear treatment approaches that are currently being explored. The ideas, people and projects are in place. Funding is needed to execute this critical work.

As printed in a www.eurekalert.org/

pub_releases/2009-09/irsf-iaf092109.php public release announcement:

On Sept. 21, 2009, the International Rett Syndrome Foundation announced that it will provide $200,000 in 2009 to support a newly proposed clinical trial with a growth-factor based treatment for Rett Syndrome.

The study will be carried out by a team of clinical trials specialists at the Boston Children’s Hospital, led by Dr. Omar Khwaja MD, PhD and will be the first potentially disease modifying therapy ever to be tested in Rett Syndrome patients. Investigators will test a drug called Increlex.

“We are pleased to announce the funding of this groundbreaking new clinical study which presents a novel therapeutic strategy for the treatment of Rett Syndrome” said Dr. Antony Horton chief scientific officer at the International Rett Syndrome Foundation.

“This study will be carried out by a collaborative network of leading clinicians and neuroscientists in some of the World’s most prestigious research institutes at the cutting edge of biomedical research. Through our funding of this study we demonstrate our commitment to moving forward the most advanced treatments to prevent, treat and ultimately reverse Rett syndrome,” he said.

Ronna Reid

Rawlings

Genius locus
Apr 16th 2009
From The Economist print edition

There is strong evidence for a link between genius and autism. In the first of three articles about the brain this week, we ask how that link works, and whether “neurotypicals” can benefit from the knowledge

THAT genius is unusual goes without saying. But is it so unusual that it requires the brains of those that possess it to be unusual in others ways, too? A link between artistic genius on the one hand and schizophrenia and manic-depression on the other, is widely debated. However another link, between savant syndrome and autism, is well established. It is, for example, the subject of films such as “Rain Man”, illustrated above.

A study published this week by Patricia Howlin of King’s College, London, reinforces this point. It suggests that as many as 30% of autistic people have some sort of savant-like capability in areas such as calculation or music. Moreover, it is widely acknowledged that some of the symptoms associated with autism, including poor communication skills and an obsession with detail, are also exhibited by many creative types, particularly in the fields of science, engineering, music, drawing and painting. Indeed, there is now a cottage industry in re-interpreting the lives of geniuses in the context of suggestions that they might belong, or have belonged, on the “autistic spectrum”, as the range of syndromes that include autistic symptoms is now dubbed.

So what is the link? And can an understanding of it be used to release flashes of genius in those whose brains are, in the delightfully condescending term used by researchers in the area, “neurotypical”? Those were the questions addressed by papers (one of them Dr Howlin’s) published this week in the Philosophical Transactions of the Royal Society. The society, Britain’s premier scientific club and the oldest scientific body in the world, produces such transactions from time to time, to allow investigators in particular fields to chew over the state of the art. The latest edition is the outcome of a conference held jointly with the British Academy (a similar, though younger, organisation for the humanities and social sciences) last September.

A spectrum of belief
A standard diagnosis of autism requires three things to be present in an individual. Two of these three, impairments in social interaction and in communication with other people, are the results of autists lacking empathy or, in technical jargon, a “theory of mind”. In other words they cannot, as even fairly young neurotypicals can, put themselves in the position of another being and ask themselves what that other is thinking. The third criterion, however, is that a person has what are known as restrictive and repetitive behaviours and interests, or RRBI, in the jargon.

Until recently, the feeling among many researchers was that the first two features were crucial to someone becoming a savant. The idea was that mental resources which would have been used for interaction and communication could be redeployed to develop expertise in some arbitrary task. Now, though, that consensus is shifting. Several of the volume’s authors argue that it is the third feature, RRBI, that permits people to become savants.

Francesca Happé of King’s College, London, is one of them. As she observes, obsessional interests and repetitive behaviours would allow someone to practice, albeit inadvertently, whichever skill they were obsessed by. Malcolm Gladwell, in a book called “Outliers” which collated research done on outstanding people, suggested that anyone could become an expert in anything by practising for 10,000 hours. It would not be hard for an autistic individual to clock up that level of practice for the sort of skills, such as mathematical puzzles, that many neurotypicals would rapidly give up on.

Many, but not all. Dr Happé has drawn on a study of almost 13,000 individual twins to show that childhood talent in fields such as music and art is often associated with RRBIs, even in those who are not diagnosed as classically autistic. She speculates that the abilities of savants in areas that neurotypicals tend to find pointless or boring may result from an ability to see differences where a neurotypical would see only similarities. As she puts it, “the child with autism who would happily spend hours spinning coins, or watching drops of water fall from his fingers, might be considered a connoisseur, seeing minute differences between events that others regard as pure repetition.”

Simon Baron-Cohen, a doyen of the field who works at Cambridge University, draws similar conclusions. He suggests the secret of becoming a savant is “hyper-systematising and hyper-attention to detail”. But he adds sensory hypersensitivity to the list. His team have shown one example of this using what is known as the Freiburg visual acuity and contrast test, which asks people to identify the gap in a letter “c” presented in four different orientations. Those on the autistic spectrum do significantly better at this than do neurotypicals. That might help explain Dr Happé’s observations about coins and raindrops.

Insight, too, is given by autists themselves. Temple Grandin is a professor of animal science at Colorado State University. She also writes about her experience of being autistic. As she describes in the volume, one of the differences she perceives between her experience and that of most neurotypicals is that she thinks in images. She says her mind is like an internet search engine that searches for photographs. To form concepts, she sorts these pictures into categories. She does not, however, claim that all autistic people think like this. To the contrary, she describes two other sorts: pattern thinkers who excel at maths and music, and verbal specialists who are good at talking and writing, but lack visual skills. The latter might not qualify as autistic under a traditional diagnosis, but slip into the broader autistic spectrum.

The question of how the autistic brain differs physically from that of neurotypicals was addressed by Manuel Casanova of the University of Louisville, in Kentucky. Dr Casanova has spent many years dissecting both. His conclusion is that the main difference is in the structure of the small columns of nerve cells that are packed together to form the cerebral cortex. The cortical columns of those on the autistic spectrum are narrower than those of neurotypicals, and their cells are organised differently.

The upshot of these differences is that the columns in an autistic brain seem to be more connected than normal with their close neighbours, and less connected with their distant ones. Though it is an interpretative stretch, that pattern of connection might reduce a person’s ability to generalise (since disparate data are less easily integrated) and increase his ability to concentrate (by drawing together similar inputs).

Rain and sunshine
Given such anatomical differences, then, what hope is there for the neurotypical who would like to be a savant? Some, possibly. There are examples of people suddenly developing extraordinary skills in painting and music in adult life as a result of brain damage caused by accidents or strokes. That, perhaps, is too high a price to pay. But Allan Snyder of the University of Sydney has been able to induce what looks like a temporary version of this phenomenon using magnetism.

Dr Snyder argues that savant skills are latent in everyone, but that access to them is inhibited in non-savants by other neurological processes. He is able to remove this inhibition using a technique called repetitive transcranial magnetic stimulation.

Applying a magnetic field to part of the brain disrupts the electrical activity of the nerve cells for a few seconds. Applying such a field repeatedly can have effects that last for an hour or so. The technique has been approved for the treatment of depression, and is being tested against several other conditions, including Parkinson’s disease and migraines. Dr Snyder, however, has found that stimulating an area called the left anterior temporal lobe improves people’s ability to draw things like animals and faces from memory. It helps them, too, with other tasks savants do famously well—proofreading, for example, and estimating the number of objects in a large group, such as a pile of match sticks. It also reduces “false” memories (savants tend to remember things literally, rather than constructing a mnemonic narrative and remembering that).

There are, however, examples of people who seem very neurotypical indeed achieving savant-like skills through sheer diligence. Probably the most famous is that of London taxi drivers, who must master the Knowledge—ie, the location of 25,000 streets, and the quickest ways between them—to qualify for a licence.

The expert here is Eleanor Maguire of University College, London, who famously showed a few years ago that the shape of the hippocampus, a part of the brain involved in long-term learning, changes in London cabbies. Dr Maguire and her team have now turned their attention to how cabbies learn the Knowledge.

The prodigious geographical knowledge of the average cabbie is, indeed, savant-like. But Dr Maguire recently found that it comes at a cost. Cabbies, on average, are worse than random control subjects and—horror—also worse than bus drivers, at memory tests such as word-pairing. Surprisingly, that is also true of their general spatial memory. Nothing comes for nothing, it seems, and genius has its price.

Savant syndrome, then, is a case where the politically correct euphemism “differently abled” has real meaning. The conclusion that should be drawn, perhaps, is not that neurotypicals should attempt to ape savants, but that savants—even those who are not geniuses—should be welcomed for what they are, and found a more honoured place in society.

PITTSBURGH, Aug. 10 /PRNewswire/ -- DynaVox Mayer-Johnson, the world's leading provider of communication and education solutions for individuals with speech, language and learning disabilities, today announced the DynaVox Xpress. The Xpress sets a new standard for hand-held speech solutions by bringing together comprehensive augmentative and alternative communication (AAC) tools with a variety of mainstream communication features.
An innovative, sleek and extremely portable device, the Xpress delivers powerful communication capabilities for individuals living with stroke, autism, Down syndrome, traumatic brain injury, aphasia, ALS, and apraxia of speech.
This integration allows for robust communication in virtually any situation, and:
Enables mobility and creates confidence. The Xpress is so small it can be held in one hand or two, and can easily be carried in a pocket or purse. With its discreet design, the Xpress allows augmented communicators to blend in with the crowd and still speak their minds. Touch screen technology never before available in a speech device creates a compelling visual experience, and allows touching or "sweeping" to access more content quickly with fingers or thumbs.
Takes AAC technology to new heights. With multiple connectivity options such as Wi-Fi for internet and email access, Bluetooth, and infrared remote control, the Xpress offers unparalleled opportunities for communication. Multimedia tools such as MP3 and video players allow Xpress users to share their personalities in new ways.
Stands up to the demands of daily life. The Xpress is made of rugged magnesium and uses Flash memory to withstand the stresses of life. Swappable batteries, or an extended battery, ensure that Xpress users have the power they need to keep the conversation going all day.
Makes every voice - and every emotion - heard. Twin front-firing speakers allow Xpress users to be heard in virtually any environment. The new voices included with the Xpress are natural-sounding and take communication to the next level by adding emotion - laughter, crying, shouting and whispers.
Preserves familiar content. Existing DynaVox customers and their care teams will recognize the powerful InterAACT language framework designed to meet the communication needs of individuals regardless of age or ability level. Thousands of pre-programmed pages minimize the need for programming.
Includes comprehensive DynaVox Mayer-Johnson support. Xpress users and their care teams will have access to the full-range of DynaVox Mayer-Johnson's pre- and post-purchase support services including funding assistance, sales support, and technical support. The Xpress also gives the user one-touch access to technical support, where DynaVox personnel can remotely access the device and assist the user.
"Our clients told us they wanted a highly portable solution without sacrificing communication functionality," said Ed Donnelly, CEO of DynaVox Mayer-Johnson. "The Xpress accomplishes this objective, and delivers a quantum technological step forward, in a device that looks and feels like mainstream technology. We are excited to be introducing the most transformative speech device ever to the AAC community."
The Xpress will begin shipping to customers in late August 2009. Funding is available through Medicare, Medicaid and private health insurance providers.
About DynaVox Mayer-Johnson
DynaVox Mayer-Johnson develops a range of speech communication and education solutions designed to help children and adults challenged by significant speech, language and learning disabilities make meaningful connections and participate in the home, classroom and the community. The company's DynaVox line of speech communication devices gives a voice to the millions of people who are unable to use speech as their primary means of communication due to the effects of conditions such as amyotrophic lateral sclerosis (ALS or Lou Gehrig's Disease), stroke, traumatic brain injury, cerebral palsy, Parkinson's Disease, autism and mental retardation. The Mayer-Johnson line of print-based and on-screen education products engage students in the learning process and support academic achievement. Driven by a strong entrepreneurial culture, the company develops technology-based products and offers an extensive customer support program to assist individuals as well as their families and support professionals. For more information about DynaVox Mayer-Johnson, visit www.dynavoxtech.com.

SOURCE DynaVox Mayer-Johnson

Watch the film

Hayley Moran from Wythall in Worcestershire wants to make her home safe for her two young sons, who have autism.
But she is struggling to find the £30,000 she needs because the boys don't qualify for grants unless they are registered as disabled.
The National Autistic Society says that thousands of families are struggling to get their needs properly recognised - because the people who assess their needs haven't been properly trained, and they have to fight their way through acres of red tape.
You can hear Hayley talking to Victoria Derbyshire on Radio 5 live on Friday 7 August from 10 am. Or catch up later at Victoria's blog .

By Brattleboro

Last spring, my family and I moved from our 22-acre farm in western Massachusetts to the center of Brattleboro. It was the beginning of a new life together.

Six months later, at the age of 50, I was diagnosed with Asperger’s Syndrome, a high-functioning form of autism. Far from being a moment of heartbreak, my diagnosis was a cause for celebration. For the first time, my life made sense.

I had always felt very different from other people. I had always had a sense of apartness, of otherness, for which I could find no explanation.

The subject of autism had always fascinated me, but the idea that I might be autistic seemed absurd. I’d gone to college, made friends, and worked full-time. I was married and raising a family. How could I be autistic? After all, autistic people were locked into their own, strange worlds, unable to communicate or function in society.

Or so I thought.

I’ve come a long way since then. In the process of understanding myself as an autistic woman, I’ve had to discard all of the myths I’ve ever heard on the subject. These myths include the following.

* * *

Myth #1: All autistic people are nonverbal and low functioning.

Autism is a spectrum condition. In the U.S., one person in every 150 is autistic, and more than half of all autistic people have Asperger’s Syndrome. In addition, many people on the spectrum find themselves between the high-functioning and low-functioning extremes. In fact, some who begin at the more severely affected end of the spectrum can become higher functioning as they grow and learn.

* * *

Myth #2: Autism is a mental illness.

Autism is not a psychological disorder. It is a neurological condition in which the brain and nervous system are highly sensitive to sensory stimuli.

When the average person takes in sensory information from the environment, he or she intuitively filters it, prioritizes it, and responds in a purposeful way. For autistic people, sensory processing works very differently. The information comes in full force, without a great deal of filtering.

For example, I have almost no ability to filter auditory information. Anywhere I go, I hear a cacophony of sounds and voices, all at the same high volume. It is difficult for me to have a conversation with a lot of sound in the background, because for me, there is very little background. Any loud, crowded, unstructured situation causes me nearly immediate sensory overload.

I also experience the visual world very intensely. I am constantly scanning my environment, looking at numerous details, and attempting to order them into some sort of pattern. Because the visual world constantly changes, my ordering process never stops. It’s only recently that I’ve realized that most people do not experience the visual world with the same intensity that I do.

* * *

Myth #3: Autistic people lack empathy.

Far from lacking empathy, autistic people often have an excess of empathy. However, because of our sensory sensitivities, we may not always be able to show it.

As a child, I was very sensitive and vicariously experienced the suffering of others. For example, in Hebrew school, we watched Nazi footage of what had happened in the concentration camps during the Holocaust. I saw films in which people were lined up at the edge of a ditch and shot. The empathy I felt for the people was immediate. I felt myself experiencing what they were experiencing, as though it were happening to me at that very moment.

For many years since then, I’ve been aware that when I walk into a room full of people, I enter into the emotional experience of everyone present. It’s as though all the emotions come right through me. It all comes in much faster than I can process it, but I feel its impact. I become very disoriented, so much so that I have difficulty feeling or thinking at all.

My husband can usually tell when I’m having this experience. He’ll say, “You’re gone, aren’t you?” to which I can only nod an emphatic “Yes.”

* * *

Myth #4: Autistic people are antisocial.

Autistic people often have difficulties in communication because we are unable to intuitively read nonverbal cues, such as facial expressions and body language.

I’ve recently learned that nonverbal cues make up about 90 percent of any conversation. Until my diagnosis, I had no idea that nonverbal language even existed. When conversing, I just hear the words. That’s all. And because I just hear the words, I have to spend more time listening, translating, thinking, and responding than a neuro-typical person.

My response times are therefore delayed. People sometimes interpret my delayed response as a lack of interest. Under most circumstances, they are mistaken.

I don’t think it’s possible for me to fully express what a longing I have to spend time with other people. However, a 10-minute conversation with one person can feel like a lot of work. A conversation with more than one person is nearly impossible. And when you add my sensory and emotional sensitivities to the mix, you get a person who requires a great deal of solitude.

* * *

Myth #5: Autistic people don’t make eye contact because they don’t care about what people have to say.

I find eye contact very difficult, but it has nothing to do with whether I’m interested in what someone is telling me. In fact, if I’m interested, I usually have to look away from the person in order to think clearly.

Over the years, in an attempt to mask my difficulties, I have developed a number of cloaking devices, including the ability to make and maintain eye contact. However, the skill does not come naturally.

Except for my husband and my daughter, I shy away from eye contact with most people, rather in the same way that I shy away from looking directly into the sun. When I look into a person’s eyes, I have such a profound experience of the person that it’s overwhelming.

* * *

Myth #6: Autistic people can’t have families of their own.

Many autistic people are married and raising children. Both my husband and my daughter are neuro-typical, and I adore them.

* * *

Myth #7: Autistic people are puzzles with pieces missing.

The use of the “missing puzzle pieces” metaphor to describe autism is a source of great pain for me.

Before my diagnosis, I used to feel that I had pieces missing. Once I discovered that I had Asperger’s Syndrome, all of the pieces of my life started coming together to form a coherent, recognizable picture. For the first time in my life, I felt whole.

* * *

Myth #8: Autistic people have low intelligence.

Autistic people have different levels of intelligence, just as neuro-typical people do. The test used for measuring intelligence makes a profound difference in the outcome of the assessment.

In a 2007 study, autistic children and neuro-typical children took two IQ tests: the wisc test (which relies on verbal questions and responses) and the Raven’s Progressive Matrices test (which measures the ability to do high-level abstraction and complex reasoning).

Not a single autistic child scored in the high-intelligence range of the wisc; in fact, one-third scored in the low-intelligence range. However, one-third of the autistic children scored in the high-intelligence range on the Raven’s. Autistic and neuro-typical adults were tested as well, with the same results.

* * *

Myth #9: Autistic people do not enjoy life.

For some autistic people, this statement is true, just as it’s true for any other group of people. However, many of us find great joy in our loved ones, and we can focus like a laser beam on our special interests for hours on end. My family, my friends, my art, my music, my writing, and my community work are constant sources of joy and satisfaction.

* * *

Myth #10: Autism is a disease in need of a cure.

This statement is the focus of passionate debate.

Like many others, I do not consider autism a disease. As researchers at the Swiss Brain-Mind Institute wrote in a 2007 article, “The autistic person is an individual with remarkable and far above average capabilities due to greatly enhanced perception, attention, and memory. In fact, it is this hyper-functionality which could render the individual debilitated.”

At present, there is no cure for autism. I understand why some people on the spectrum might want a cure. Being autistic, even at a high-functioning level, is very difficult. For people on the severe end of the spectrum, the condition can be truly disabling.

Personally, I do not want to be cured. Autism makes me who I am, and it has given me many gifts. I am sensitive, empathetic, and artistic. I see great beauty in the world, and I feel its injustices very deeply. I am very direct in my speech, and for that reason, people intuitively trust me.

I would not want to be different. I am proud of who I am. It has taken me 50 years to discover the truth about my life. In the time remaining to me, I plan to mine that truth for all its worth.

Source: http://www.commonsnews.org/test3/story.php?articleno=694

Elizabeth Diffin/Medill
They look like submarines or spaceships. But have you ever wondered what it's like INSIDE a hyperbaric chamber for oxygen therapy? The Midwest Hyperbaric Institute in Bolingbrook offers a peek inside a device used to help treat wounds, neurological disorders, cerebral palsy and, increasingly, autism.



by Elizabeth Diffin

It could be any after-school program or day-care center, with a set of twins playing tug-of-war with a pillow and a serious-looking boy watching a television program. But what makes this room different from the typical cookies-and-juice session is the fact that these children are encased in large acrylic tubes where they’re breathing pressurized, oxygenated air.
These children have been diagnosed as being on the autistic spectrum, and they’re receiving a controversial treatment – hyperbaric oxygen therapy – in the hope that it will improve their autistic symptoms and behaviors.
A study published in March found that hyperbaric oxygen therapy, in which air is pressurized to simulate deep-sea levels, may be a viable treatment for autism. The research showed improvements in autistic children who had the therapy, particularly in their overall "autistic functioning," such as receptive language, social interaction and eye contact.
Dr. Dan Rossignol, a family practitioner in Melbourne, Fla., who authored the study, has two autistic children of his own. In 2006, after "buzz" began to build about hyperbaric oxygen therapy in kids with autism, he and his wife decided to try it for their younger son, who had only been speaking single words. After about 20 hyperbaric treatments, the boy began to put together three to four word sentences, piquing his father’s interest in the topic.
However, when Rossignol, who has a hyperbaric chamber in his clinic, began to look into research on hyperbaric oxygen therapy for autism, he said he was surprised to see there weren’t any double-blind controll studies on the topic. So he decided to do his own and published the results in BMC Pediatrics, an open-access online journal.
Doctors at Midwest Hyperbaric Institute in the southwest suburb of Bolingbrook, have been using hyperbaric oxygen therapy with autistic children for the past five years. In addition to the traditional uses of hyperbaric oxygen therapy – such as wound healing and decompression sickness – the facility has pioneered treatment for neurological conditions like cerebral palsy, stroke, multiple sclerosis and autism.
The facility traditionally has five or six children undergoing treatments during the same time period. The children have 40 sessions, called "dives," at 1.3 to 1.5 atmospheres, take a break for four to six weeks, and then return for 40 more dives. By the end of the 80 one-hour sessions, parents, doctors – and even independent therapists – say they notice some sort of improvement in the autistic kids.
In fact, Dr. August Martinucci, the medical director of Midwest Hyperbaric Institute, said that in the years he’s been treating autistic children with hyperbaric oxygen therapy, it’s always proven effective.
"I’ve never seen one [child] with no improvement whatsoever," Martinucci said. "It might have been minor, but there have been changes."
He does caution, however, that hyperbaric oxygen therapy is not the autism cure-all and that it works best in conjunction with the other more traditional therapies.
According to Martinucci, there’s not a single "silver bullet" that will be a cure. "It’s a spectrum disease," he said. "You have to have a spectrum of treatments."
Parents admit that they’re willing to try almost anything to help their autistic child improve.
Brian McNally, whose 6-year-old son, Sean, was diagnosed with autism about four years ago, said the boy is on a variety of medications and supplements, goes to physical and occupational therapy, and adheres to a strict diet.
"We’re throwing the kitchen sink in to see what sticks," McNally said.
But he said that in the 28 sessions Sean has undergone, he’s already exhibited signs of improvement. Sean makes eye contact more often and obeys directions. He just learned to ride a bike. And next school year, he will be part of a partially-integrated first grade class, participating in classes such as art, music and lunch with the so-called "normal" children.
"They’re tiny gains," McNally said. "But all the tiny gains add up."
Skeptics say that these supposed gains may simply be a case of the placebo effect, with parents seeing an improvement only because they’re looking for one. In traditional drug studies, the placebo effect is observed when the participants taking a "sugar pill" report medical improvement.
In Rossignol’s study, a striking 73 percent of parents with children in the control group rated their child as improved, without knowing they hadn’t been given true hyperbaric oxygen therapy.
"The placebo effect is very powerful," said Dr. Alan Rosenblatt, a Chicago neurodevelopmental pediatric specialist. "I think when there is no cure, anything is a cure."
Rosenblatt said his skepticism is rooted in his own understanding of neurophysiology, as well as the success he has seen as a result of behavioral interventions in very young children. He said the research community might be better served by focusing on the more proven therapies, and their theoretical foundations, when it comes to treating autism.
"You have to have a healthy dose of skepticism even for a proven therapy," Rosenblatt, who is on faculty at Feinberg School of Medicine, said. "More understanding of the underlying mechanisms of the disease will lead to the most meaningful interventions and treatments."
In fact, no one knows for sure why hyperbaric oxygen therapy might cause the improvement so many parents and therapists have noticed. But Martinucci speculated that the increased blood flow from the hyperbaric oxygen therapy acts as an anti-inflammatory agent that soothes the swelling many autistic children suffer from in their brain and gastrointestinal tract.
Patients being treated for a variety of conditions also mention the increased "clarity of thought" brought on by the hyperbaric oxygen therapy. Jennifer, who asked that her last name not be used, is the mother of 3-year-old autistic twins being treated at Midwest Hyperbaric Institute.
"Both of my kids seemed less foggy," she said. "They were looking at me and getting it. They seemed more ‘plugged in.’"
And the energetic boys running down the hallway to "blast off" in the spaceship-shaped hyperbaric oxygen therapy chamber certainly seem a far cry from the withdrawn children their mother described.
"They love it here," she said, noting their roughhousing in the hyperbaric chamber.
Indeed, many autistic patients seem to do particularly well when it comes to hyperbaric oxygen therapy, Martinucci said. Children who benefit from deep pressure find the treatment soothing and some of them have mentioned that their heads "feel good" after the treatment.
"We have more problems with the parents than with the kids," Martinucci said. "The kids are happy to go in there."
Of course, there are bigger problems than overprotective parents when it comes to the application of hyperbaric oxygen therapy to autism. Rosenblatt doesn’t think that Rossignol’s study is conclusive enough for him to recommend to patients.
"I can’t say it’s a proven therapy for autism," Rosenblatt said. "But I do think we ought to take this study seriously and challenge people to replicate it."
Rosenblatt said that he’s happy the researchers attempted to do a double-blind study, something that is notoriously difficult with a spectrum disorder. But he said that if the research is able to be replicated – preferably by a more authoritative academic center – it’s more likely to be embraced by the mainstream medical community. But until that point, he said he would recommend parents to focus on the proven interventions, such as behavioral and speech therapies.
"My advice would be to put neurodevelopmental therapies at the center of your total therapeutic package," Rosenblatt said.
And if patients are insistent on trying other treatments, Rosenblatt said to explore them one at a time to determine their true impact.
"Many parents won’t feel comfortable until they’ve tried every possible intervention to help their child," Rosenblatt said. "My heart goes out to these parents. I don’t envy them their choices and decisions."
Many of those same parents are hopeful that increased study of hyperbaric oxygen therapy in autistic kids will have a different sort of benefit: the financial kind. Hyperbaric oxygen therapy treatments are expensive – a set of sessions can cost several thousand dollars – and many insurance companies aren’t willing to cover them because they’re considered "off-label."
Tina O’Sullivan, whose 17-month-old son, Sean, is being treated for a brain injury – not autism – at Midwest Hyperbaric Institute, said the insurance payments are a constant battle.
"Insurance covers certain things," she said. "But these treatments are essentially his first year of college."
Rossignol said he hopes that if his study is able to be reproduced, it might open the door to additional approved treatment options for autism. And he believes that in the long-run, those treatments will have a larger benefit.
"If we can come up with treatments that lead to improvements, the savings to society could be huge," Rossignol said. "If these studies continue to come out, it might become a standard treatment."
But in the meantime, he hopes that for the people who can afford to pay for hyperbaric oxygen therapy, his study provides some reassurance.
"If parents want to do this and have the money, it certainly seems to be safe," Rossignol said. "Parents can know it’s not going to be harmful."
In fact, he said that the main finding of the study was that the hyperbaric oxygen therapy was well-tolerated by most children. And he was quick to point out that although they did observe some gains, there were some kids who didn’t necessarily improve, which was expected.
"Within a study, there’s always going to be some who improve and some who don’t," he said. "We take a reasonable approach: This is a promising treatment."




Elizabeth Diffin/Medill
Sean McNally, a 6-year-old with autism, is more than a quarter of the way through his hyperbaric oxygen therapy. His parents and teachers have noticed positive results.












Research looks at hyperbaric treatment and autism
The hyperbaric oxygen treatment study for autism, published in the March issue of BMC Pediatrics, was a double-blind, controlled trial.
Dr. Dan Rossignol and his colleagues studied 62 children between the ages of two and seven who received 40 treatments over the course of four weeks. The treatment group had hyperbaric oxygen therapy with air pressurized to a standard 1.3 atmospheres (the rough equivalent of deep-sea diving to 10 feet), while the control group breathed only slightly pressurized air to mimic the other treatment.
The children, their parents and the evaluating physicians did not know which group the children were in. The hyperbaric technicians, who had no input into the treatment, were the only ones aware of each child’s status and were instructed to keep it secret.
At the beginning and end of the study, the parents and physicians filled out standardized scales rating the child’s functioning in several different areas. The evaluations were then compared to determine whether the child had improved as a result of the therapy. Children in the treatment group scored significantly better on the Clinical Global Impression scale, with the greatest improvements found in overall functioning, receptive language, social interaction and eye contact.
Analysis done after the study’s completion revealed that higher-functioning autistic children, who initially scored in the top 50 percent of the scales, showed the fastest improvement. Children over the age of five also showed greater advances than their younger counterparts.
Rossignol was quick to point out that those results need to be studied further to determine if they are a "true finding."
"We don’t know for sure why [the therapy] worked," he said. "But the nice thing about this study is that a condition that’s felt by most people to be untreatable is showing potential improvement. We’re not saying this is an answer or a cure. But it might be good in some children. It’s promising."

What is Autism?

There seems to be a lot of confusion as to what autism and autism spectrum disorders actually are. It’s understandable, because persons on the autism spectrum can be so individually different. Some cannot talk. Some talk early. Some are highly intelligent, others have some degree of mental retardation. Some have extreme sensory issues and some don’t. Some have motor planning problems, and some are very athletic. And the list goes on. So with all of these differences between individuals, what do these people have in common? Regardless of diagnosis - Asperger’s Syndrome, PDD, PDD-NOS, Autism or any other autism spectrum disorder, what all persons with autism spectrum disorders seem to have in common is their core deficit. Autism spectrum disorders arise from a neurological condition; a weakened area that seems to be located somewhere along the pathway that runs from the prefrontal cortex to the hippocampus of the brain. No one yet knows definitively what causes this condition.

Individuals on the autism spectrum seem to have this weakened pathway, which results in the following core deficits: Deficits in: comparative thought and interpretation, flexibility and adaptability to change, creative thought, decision-making, judgment, and memory of past positive feelings about events. In typical individuals, this pathway creates a hierarchy of comparison, and interprets everything we see, hear, do and feel. It compares one thing to another, compares past to present situations, compares how we felt before to now, separates important from the unimportant, and then uses all of that information to judge situations and come up with with unique solutions. Typical people spend most of the day using this part of their brain effortlessly, sailing through thousands of little moment-to-moment decisions with ease. But for a person on the autism spectrum, all of those tiny moment to moment decisions can be quite difficult and often scary. Because of the weakened brain pathway, individuals on the autism spectrum have a limited ability to compare, interpret and solve new situations. As a result, they remain tied to using solutions they already know, and have limited ability to deal with new or changing situations. Decision-making and judgment abilites that most of us take for granted, such deciding which way to go to the store today, interpreting and understanding the actions of other people, or even figuring out how near or far to walk next to someone often cause confusion and fear in a person with an autism spectrum disorder. As a result, the world often seems chaotic and scary to individuals on the spectrum, and other people seem to act in abrupt and unexpected ways that are just impossible for them to understand.

To try to control some of this chaos and keep things predictable, autistic individuals tend to rely heavily on formulas and repetitive sequences to get through their day. These sequences and formulas rely on a different part of the brain that usually functions quite well in persons on the autism spectrum. It’s the area of the brain that runs our “red = stop, green = go”, “2+2=4″ type thinking - very formulaic, very predictable , and very absolute thought. Unfortunately, this area of the brain is unable to compare, interpret, adapt, or see possiblities. Of course when faced with new or changing situations, when most formulas won’t work, persons on the spectrum often fall apart, out of fear of the unknown. Most of the tantrums, escape, or aggressive behaviors that we see at these times are usually “fight or flight” responses, motivated out of fear, not from being stubborn, manipulative or “bad”. One of the reasons Relationship Development Intervention is effective is because it addresses this pathway directly, by using different activities to exercise and strengthen it, much like what we do for other persons with weak or damaged brain pathways, such as persons with stroke or head injury, etc. You can find out more about Dr Gutstein and Sheely’s work via rdiconnect. Until recently, trying to understand autism has been very confusing - it’s only been explained as a series of seeminly unrelated symptoms. But once one understands the core deficit - the brain pathway that ties all those seeminly scattered symptoms together into one cohesive piece, autism becomes much easier to understand, and as a result more easily targeted and treated. Copyright 2006, Sandra Sinclair

About the Author
Sandra Sinclair is a parent of a child with PDD-NOS. Sandra assists parents of children with autism spectrum disorders to create a life that they love - life by design, not demands - through her 6-step program. She is also author of Newly Diagnosed Autism Spectrum - A free mini-course with 7 clear steps you can take to help your child with Aspergers, Autism, PDD-NOS, and other autism spectrum disorders. http://www.autismvoice.com/blog/7Ste

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Posted By: Donna Lowry

ATLANTA - On a recent day, Curry Harris, 14, is walking on a balance beam while wearing glasses with blue lenses that flashes lights on the left side every few seconds.
Curry is undergoing a session at the Brain Balance Center in Peachtree City, where he spends several days a week getting a combination of therapies to strengthen the right side of his brain. Therapists at the Brain Balance Center have diagnosed Curry on the autism spectrum and are working to strengthen the right side of his brain.

Dr. Robert Melillo is a chiropractic neurologist, professor, and researcher in childhood neurological disorders who founded the Brain Balance Centers and says with proper treatment, the symptoms of autism can disappear.

"He (Curry) is a child with typical right hemispheric delays, so we're going to use his left side of his world to exercise his right side of his body and his brain," says Melillo of Curry.

The Brain Balance approach seeks to strengthen either the right hemisphere of the brain for neurological disorders such as autism and ADHD and the left side of the brain for obsessive-compulsive disorder and dyslexia.

The basis of Dr. Robert Melillo's Brain Balance research is a drug-free approach for what he calls disconnected kids.
"What happens is you end up getting a child who can't really use their whole brain at the same time," he explains.

The Brain Balance Centers treats everything from diet to physical, sensory and academic areas. Three months of treatment in the program would cost on average about $6200.

"For instance, word reading would strengthen the left side of the brain, but reading comprehension strengthens the right side," Mellillo explains.

Curry's parents say he's progressed more than they could imagine.
"Curry's grade levels have come up," Aneta Harris, Curry's mom, explains. "His math, I think he's come up 2 or 3 grade levels in math. Reading comprehension has come way up."

"We think we can get a kid to their age level within a 3-6 month period," Melillo insists.

Every kid with autism?
Melillo admits "Not every child is going to get to a normal typical level," and the program may not make major differences in a child on the more severe end of the autistic spectrum, but he believes even those children can show improvement with therapy.

Curry's parents say while he is still a work in progress, they're pleased that he no longer has anger outbursts and isn't as socially awkward.
"Socially he has become a little more aware of people around him," his mom explains. "He's giving us hugs at home which weren't done before."
Dr. Melillo will talk about brain balance and sign copies of his book, Disconnected Kids, on April 23 at 7:00pm at the Sheridan Suites at Cobb Galleria.
The Brain Balance Centers located in Roswell, Suwanee and Peachtree Center will have a booth at theGeorgia Walk for Autism on May 3 at Atlantic Station.

A decompression chamber may help children with autism, say researchers.
After 40 hours of hyperbaric treatment autistic children showed significant improvements in social interaction and eye contact compared with controls.
The BMC Pediatrics study could not show if the results were long-lasting but should prompt further investigation of the treatment, the US team said.
One theory is that oxygen can help reduce inflammation and improve flow of oxygen to brain tissue.

Hyperbaric treatment - effectively giving high concentrations of oxygen at increased atmospheric pressure - has been shown to have some benefit in other neurological conditions such as foetal alcohol syndrome and cerebral palsy.
“ We're certainly not talking about a cure, we're talking about improvements in behaviour, improving certain functions and quality of life ” Study leader, Dr Dan Rossignol

Some studies have looked at the treatment in children with autism but they have not compared with a dummy procedure raising questions around a "placebo effect".
In the latest study, carried out at six centres in the US, 62 children aged two to seven with autism were randomly assigned to receive 40 hours of treatment over a month with 24% oxygen at increased atmospheric pressure (1.3 atm) or normal air in a slightly pressurised room (1.03 atm).

Children who received the treatment showed significant improvements in overall functioning, receptive language, social interaction, eye contact, and sensory or cognitive awareness.

In all, 30% in the treatment group were rated by doctors as "very much improved" or "much improved" compared with 8% of those in the control group.
Overall, 80% in the treatment group improved compared with 38% of controls.
Behaviour

Study leader, Dr Dan Rossignol from the International Child Development Resource Centre, in Florida, said the use of hyperbaric therapy for autism has been gaining popularity in the US where parents can buy their own hyperbaric chamber if they have a spare $14-17,000.

He said the findings would be quite controversial and he too was initially very sceptical of the idea but was prompted to do more research after the treatment showed benefits for his two sons who have autism.

"We're certainly not talking about a cure, we're talking about improvements in behaviour, improving certain functions and quality of life.
"The next step is to try to find out which kids do respond, because it's an expensive treatment - it may be that kids with more inflammation respond better.

“ We also don't know about long-term effects - it could be a transitory effect ” Richard Mills, Research Autism
"It would also be nice to know how long the treatment lasts, and the finding needs to be confirmed."
Richard Mills, research director at Research Autism, said this was the first well-designed study looking at the therapy.
"We know this kind of therapy is useful in a number of neurological conditions and that's been well established.
"What we don't know is how useful it is in autism, what we could be seeing is an improvement in other neurological conditions that go alongside autism.
"We also don't know about long-term effects - it could be a transitory effect."
Professor Philip James, an expert in hyperbaric medicine at the University of Dundee, said the pressure used was no more than that used to pressurise an aircraft cabin on the ground.
He added that oxygen was the "controller of inflammation" but also had other effects on regulation of genes and tissue regeneration.
But even if proven, the treatment may not be for everybody.
"When you have any condition, there are people who have too much damage to get better."
"All the oxygen is doing is bringing things towards normal."

Story from BBC NEWS

Mar 9, 2009 by Alexandra Shimo
China is not normally considered a world leader in surgical advances, but according to a number of its doctors (and the Canadian patients they’ve treated), it has leapfrogged ahead in stem cell treatments. A growing number of people are travelling to China for a $30,000 experimental treatment: stem cell injections. Most, like New Brunswicker Jean Christophe Haas, 40, decide to go because they have a debilitating illness and there isn’t much that Western medicine can do for them.

Haas has Machado-Joseph disease (MJD), a terminal neuromuscular disease that affects the body in a similar way to Parkinson’s, paralyzing it gradually. Although he was diagnosed 20 years ago, it took some years for the symptoms to become noticeable. At first, only his sense of balance and his coordination were affected. Then his speech began to suffer and he started slurring his words. In 2004, he had to stop work as an army mechanic because his motor skills were no longer up to par and, in the past couple of years, he started seeing double. His family felt an overwhelming sense of panic, especially because Haas’s mother had the same disease, and his grandmother died of it. His desperation was compounded by the sense that Canadian doctors had given up on him completely; one told him there was nothing to do but to accept his fate of an early death, says his wife, Cherie Haas. “It’s awful for a young man with a family to go in and hear that. It’s heartbreaking.”


Ms. Haas searched the Web and found stories of other MJD patients who seemed to have been helped by stem cell therapy at various Chinese hospitals. Many of these good news stories are posted on personal blogs or on the websites of the clinics offering the treatments. There are thousands of these testimonials, suggesting that hundreds of people go every year, says Timothy Caulfield, Canada Research Chair in Health Law and Policy at the University of Alberta, who has published studies on this issue.

Advertising on the Internet, these Chinese medical centres promise to treat a surprisingly extensive range of diseases and conditions, including ALS, autism, brain injuries, cerebral palsy, epilepsy, multiple sclerosis, Parkinson’s, spinal muscular atrophy, septo-optic dysplasia (which can cause seeing difficulties, blindness and mental retardation), spinal cord injuries and stroke. Foreigners are a major source of funds for the clinics. Some doctors like Dr. Huang Hongyun, a neuroscientist at Beijing Xishan Hospital, have treated many patients from outside China, including some from Canada, and he has published a number of papers in Chinese medical journals tracking patients pre- and post-procedure. And yet some North American doctors are critical of how the data was compiled, and skeptical of the treatments on offer.

Once Jean Haas decided to go, he told his plans to Guy Rouleau, a neurologist at Centre Hospitalier de l’Université de Montréal, who said there were slight risks of complications, and that it would probably be a waste of money. But otherwise he didn’t try to dissuade him. Raising the money for the trip was easier than expected: much of the town of Oromocto, N.B., pitched in to raise the $30,000, with neighbours’ kids shovelling driveways to help out, and the military and community organizations hosting breakfasts and fundraisers. In April 2007, he and his wife travelled to Shenzhen, China, and stayed a little more than a month. During that time, Haas had six injections of stem cells into his spine, and an intense program of physiotherapy, exercise, massage and acupuncture. The results were immediate, he says—his balance improved just a few hours after the first procedure. Back in Canada, his neurologist confirmed that Haas had indeed gotten better: he had about 10 to 15 per cent more movement, according to Rouleau, who examined him before and after the trip. It’s difficult to speculate why this occurred, but Rouleau believes the intense physiotherapy was the primary cause.

When the couple returned from China, they wrote about their experience on the Web. Word got around, and soon hundreds of people were calling them, Cherie says. A couple whose husband had a similar neurodegenerative disease even drove from Quebec to see them, and the man subsequently decided to make the stem cell trip. Another couple flew in from Taber, Alta., and decided to go to China after seeing the home videos of Haas’s progress. Those gains were partly due to the attitude of Chinese doctors, Cherie believes. They would tell Haas to push himself to his limit and even try to “retrain his brain,” she explains. “We saw miracles while we were over there. We put the word out because I know this works.”

Even if patients experience gains, it’s important to determine whether they are from the treatment, the exercise program or a more positive frame of mind. Any advances could be merely the placebo effect, as people often feel better after being treated, even if the procedure hasn’t worked and the gains won’t last, explains John Steeves, a professor at the college for interdisciplinary studies at the University of British Columbia who specializes in spinal cord injuries. Finding out whether any treatment really works requires clinical trials, and although Dr. Huang has published the results of his trials in Chinese medical journals, this data does not conform to international standards of medical analysis. Indeed, Steeves believes Huang deliberately flouts these standards to help his bottom line. “Dr. Huang has no interest doing a valid clinical trial because if it doesn’t give him good results, his income would dry up immediately,” he says from his Vancouver office.

Patients, like Haas, who seem to have been helped by stem cell treatments, are often eager to share their stories. They may become advocates for the Chinese medical centres; Haas’s story is publicized on the website of the company that organized his medical tourism trip. By contrast, it’s more difficult to find people who haven’t gotten better, or are worse after spending $30,000 on an experimental procedure. This might be because they feel duped, or because the Chinese stem cell treatment emphasizes empowerment—a “you can do it attitude.” Those who can’t “do it,” who go through the rigorous training program and end up no better off, may feel unlucky, cheated, or they may take the lack of success personally and feel that they have somehow failed.

Missouri resident Jeff Carneal, 38, doesn’t feel like a failure, but having spent so much money, he is frustrated and disappointed. He lost the use of his legs when he fell off a stepladder while fixing his father’s barn. He has spent the past six years working with different doctors trying to learn to walk again, even flying to Quito, Ecuador, for an experimental operation (nerves were removed from his legs and grafted onto his spinal cord, which cost a lot, but didn’t really help). When a Maclean’s reporter first met Carneal at the Beijing Xishan Hospital after stem cell treatment, he was enthusiastic and believed the operation he’d had a couple of weeks earlier had alleviated some of the shearing leg pain he’d felt ever since his accident. But when contacted a few weeks after he returned to the United States, he was more downbeat, and said the operation hadn’t really made any difference.

Negative outcomes aren’t widely reported, but they are more common than the Chinese hospitals would have you think, says James Guest, a professor of neurological surgery at the University of Miami. He visited Huang in Beijing in the summer of 2004 to sample and test the fluid being injected into foreign patients. The results were inconclusive, he says. Following this, he went a step further, and examined spinal cord injury patients pre- and post-treatment in China. The results, published in 2006 in the journal Neurorehabilitation and Neural Repair, make clear the difference between what the doctors see and what patients want to believe. Of the seven, six thought they recovered some limb movement, although in most cases the physicians measured very little difference.

A few had concrete gains: a 19-year-old had chronic, burning back pain that eased enough for the patient to stop taking painkillers. Another patient had fewer muscle spasms after the procedure and could angle his left hand a little more, although he phoned Guest six months later to say the surgery had not made any permanent difference. On the downside, there were also post-treatment complications: a 22-year-old contracted meningitis, pneumonia and gastrointestinal bleeding, which were managed with heavy medications, and another had a fever and confusion along with a drug rash. Guest is critical of the Chinese stem cell treatments: he believes some doctors are “motivated by profits” and “they place patients at risk for therapies which have minimal effect.”

Eight months after travelling to China, Haas was struggling with the symptoms of Machado-Joseph disease. He was having problems walking and was falling again. The family still had some money left over from their fundraisers, so they decided to make another trip to China, and took out a small loan. In March 2008, he and his wife went to China, this time to Qingdao in eastern China—the first hospital wouldn’t accept them since it was now prioritizing Chinese nationals over foreigners, explains Cherie. After four weeks of treatment, Haas had more energy and there were slight improvements in his balance and speech, he says. However, the gains lasted all of two months and today he’s just as bad as before the first trip. Nevertheless, despite the costs, and the dubious rates of success, the family would like to return again if they could afford it. “I would go tomorrow if we could,” Cherie says. “It gave people hope.”

By JANE E. BRODY
Published: March 9, 2009
Hyperbaric oxygen therapy was long called a treatment in search of diseases. But in recent years, laboratory and clinical studies have found more than a dozen serious diseases for which it is considered a valuable — and sometimes life-saving — treatment.

Although the administration of pure oxygen in a high-pressure chamber has been around as a therapy for more than 300 years, it is only now beginning to reach its potential, according to a report in the November issue of the journal Emergency Medicine.

At the same time, hyperbaric oxygen therapy has joined the ranks of unproven remedies for many conditions, especially incurable ones like cerebral palsy and autism. The use of the therapy in these situations often borders on quackery that exploits desperate patients and parents. One family I know spent $40,000 in a futile attempt to reverse their child’s cerebral palsy; another spent more than that and even bought a home hyperbaric unit to treat their child’s autism.

The Credibility Factor

The Undersea and Hyperbaric Medical Society, the professional organization in this field, recognizes 13 conditions for which it is legitimate to place patients in high-pressure chambers that force pure oxygen into their blood and tissues. Eleven of those conditions have been approved by Medicare for reimbursement, indicating that solid evidence supports these uses of hyperbaric oxygen.

The list includes decompression sickness (“the bends”), necrotizing fasciitis (flesh-eating disease), carbon monoxide poisoning, gas gangrene, the bone infection osteomyelitis, nonhealing wounds and delayed radiation injury to bone and soft tissue.

But nowhere in the list are cerebral palsy, autism, multiple sclerosis, stroke, macular degeneration, spinal cord injury, sports injuries, heart attack, postpolio syndrome, Lyme disease, migraine, cirrhosis, myasthenia gravis, fibromyalgia or chronic fatigue syndrome — among the dozens of conditions that independent clinics claim to treat with hyperbaric oxygen. Not to mention the claims of celebrities like Michael Jackson, who used it in the hope that it will keep him alive to 150, and Keanu Reeves, who used it for insomnia.

“Credibility is a huge problem,” said Richard E. Clarke, director of the Baromedical Research Foundation, which sponsors scientifically sound research. “We are all tarred by the same brush.”

“Although hyperbaric oxygen therapy has been suggested as beneficial in several other conditions, unfortunately, clinically valid evidence is virtually nonexistent,” he said. “This is relatively expensive and time-consuming therapy, and it makes sense to ask whether it is cost-effective and whether the benefits are long-lasting.”

Even for conditions approved by Medicare, supporting evidence is often contradictory. “A persistent criticism of hyperbaric medicine regards the lack of large-scale, multicenter, randomized studies for several of the primary indications,” noted Dr. Chris Maples and Dr. Moss Mendelson of Eastern Virginia Medical School in Norfolk, in the Emergency Medicine report. “Data are conflicting, particularly on carbon monoxide poisoning, crush injuries and some soft tissue infections. Some trials demonstrate benefit while others show no difference.”

Problems and Risks

One problem in conducting good studies is the difficulty of randomly assigning patients into treatment and control groups in a way that “blinds” them to the group they are in, Dr. Charles S. Graffeo, a specialist in hyperbaric medicine at the Eastern Virginia Medical School, said in an interview. Another problem is finding enough patients with the same condition, which is crucial in gathering statistically significant data.

Dr. Graffeo said there was “a good theoretical basis and some promising evidence that hyperbaric oxygen therapy could help treat clots on the retina, acute frostbite, recluse spider bites and thermal burns.”

“But there are just not enough scientific studies,” he said. “Conducting controlled clinical trials of hyperbaric oxygen is a bit more challenging than testing drugs.”

He cautioned patients to steer clear of independent hyperbaric centers owned by a single doctor or small medical group that is not affiliated with a major hospital or medical school. Commenting on claims commonly made by such clinics, he said: “No legitimate organization would condone treating cerebral palsy with hyperbaric oxygen therapy. I haven’t seen anything that is even potentially promising to support such a use. If I had a C.P. child, I wouldn’t even consider it.”

Furthermore, the therapy is not without risks, though most are mild and usually short-lived and there has been no documented fatality in more than 75 years of use in North America. The risks include ear and sinus pain, low blood sugar, nearsightedness that can last for weeks, and anxiety attacks resulting from confinement in the chamber. Also, the therapy is clearly dangerous for some patients, including those with a collapsed lung and those receiving chemotherapy with cisplatinum or adriamycin. The therapy may also be hazardous for pregnant women and people with poorly controlled asthma or active cancer, among others.

Established Benefits

Hyperbaric oxygen can be life-saving for patients with the bends, like divers who have surfaced too quickly. For those suffering from severe carbon monoxide poisoning, the most rigorous study so far found that three hyperbaric treatments decreased cognitive damage later. Traumas like crush injuries and thermal burns that deprive tissues of adequate oxygen also benefit from high-oxygen therapy, as do life-threatening infections called necrotizing fasciitis, if the condition is treated in its early stages, the experts in Virginia reported. The therapy may also be useful for sepsis, a potentially life-threatening bacterial infection in the blood and tissues.

Dr. Graffeo said the therapy was useful in treating diabetic foot ulcers and bone infections. It is beneficial for patients whose tissues were damaged by radiation therapy — cancer patients, for example, who can develop oxygen-deficient wounds that do not heal well. Hyperbaric oxygen promotes the release of growth hormone and helps to form blood vessels in irradiated tissue, he said.

A study published last September in the International Journal of Radiation Oncology, Biology, Physics found hyperbaric oxygen helpful for patients with radiation proctitis, which can cause bleeding, rectal ulcers and loss of bowel control. Though the costly treatment can involve as many as 40 two-hour sessions, “the net effect is reversal of the problem in the majority of patients, which in the end is cost-saving and greatly improves quality of life,” said Mr. Clarke, whose foundation sponsored the study.

Oxygen therapy is being tested in patients with new diagnoses of head or neck cancer to increase the tumor’s sensitivity to radiation treatments, Mr. Clarke said. Future studies will test benefits to patients with cancers of the larynx, skin and gynecological organs.

“The most important question to answer, in addition to cost-effectiveness,” he said, “is whether the therapeutic benefit lasts and clearly improves patients’ quality of life.”

I'm Shelley :I have to say, I'm very new to this blogging thing and right now, I'm feeling a little lost and confused....lol... (Please bear with me.) I join this site because my son Josh. Josh is 9 yrs Old and has a many issues going on. Born with a mild form of CP and Epilepsy. We later learned that Josh also has a mild form of Autism.

Each day we learn something new and take each day one step at a time. We have concord some challenges and yet we still have a long way to go. I'm interested in learning all I can about Autism.

Thanks for taking the time to read this and I look forward to meeting every one here.

HANDLE Institute

Event in February more information

LOGICALLY ILLOGICAL
Information and insight into autism
Ros Blackburn
4:15pm – 6:15pm

Ros Blackburn is an adult with autism. At three months old she appeared withdrawn, isolated and very much in a world of her own. At eighteen months she was diagnosed very severely autistic but with average intellectual ability. Now at 39 Ros lectures nationally and internationally giving insight into her own experiences and the care and education practices she has observed. In spite of the severe limitations imposed by her condition, Ros displays great courage (and a strong sense of humour) in facing her fears and tackling life’s challenges.

In this talk Ros will draw on her experience of living with severe autism and her considerable experience both as a recipient of services and increasingly as an observer of education and care approaches. Ros brings a perspective that is unique and yet speaks to all her audience: people with an autism spectrum disorder, carers, families, educators and the planners and providers of these services. Ros tells it ‘as it is’. She does not disguise the fear and limitations which are part of her daily experience. Yet she is also able to convey her wonderful capacity for fun and zest for life and her refusal to accept ‘second best’ for herself or for others. She describes the approach taken by her parents to give her what she now describes as the ‘veneer of social competence’ that enables her to engage in a still largely autism-unfriendly world. She explores with humour and passion the ‘mistakes’ from which she has had to learn and some of her coping strategies. From these she is able to offer helpful advice on practical strategies (and even more helpful advice on what not to do!) Her talk also illustrates the problems of having an uneven profile of strengths and weaknesses, where often the strengths mask her very real difficulties and needs. She does not advocate any one approach except that we should remember that people with ASD are people too and that ‘common sense’ should apply. Her position can best be summarised as an insistence on the need for high expectations for people with ASD linked with equally high levels of support. In a quote from her mother, Ros pleads that one should ‘never make autism the excuse, but help the person overcome the problems caused by it’.

Finally, it is Ros’ wish that all those who attend her talks find them helpful and informative but above all that the experience is entertaining and full of fun.