Autism One Newsletter

[Guest guest]

March 19 , 2007

Dear Friends and Colleagues -

AUTISM IN THE NEWS

Discover (cover story): Autism: It’s Just Not in the Head

April 2007 issue

By Jill Neimark

Takes a hard and serious look at the biochemistry and environmental triggers of autism, although it’s a tad light on the role of vaccines.

From the article: “In spite of so many years of assumptions that a brain disorder like this is not treatable, we’re helping kids get better. So it can’t just be genetic, parental, hardwired, and hopeless,” says Harvard pediatrician neurologist Martha Herbert, author of a 14,000-word paper in the journal of Clinical Neurology that reconceptualizes the universe of autism, pulling the brain down from its privileged perch as an organ isolated from the rest of the body. Herbert is well suited to the task, a synthetic thinker who wrote her dissertation on the developmental psychologist Piaget and then went to medical school late, in her early thirties.”

“Herbert likens autism to a hologram; Everything that fascinates me is in it. It’s got epidemiology, toxicology, philosophy of science, biochemistry, genetics, systems theory, the collapse of the medical system, and the failure of managed care. Each child that walks through my door is a challenge to everything I ever knew, and each child forces me to think outside the box and between categories.”

Scientific American: The Autism Diet

Can avoiding bread and milk ease the disorder?

April 2007 issue

By Mark Alpert

If you can believe the many testimonials posted on the Web, a diet free of gluten and casein is a miracle treatment for autism. Parents of children suffering from the disorder, which is characterized by impaired social and communication skills, fervently describe astounding improvements that occurred as soon as they removed gluten (a mixture of plant proteins found in wheat, rye and barley) and casein (the main protein in dairy products) from their kids' meals. Surveys indicate that as many as 40 percent of children with autism have been placed on special diets at one time or another. This enthusiasm is grounded more in hope than in science; so far researchers have no good evidence that dietary interventions can alleviate the symptoms of autism. Recently, however, investigators have launched the first rigorous tests of the diets, and the results may be available within a year. Read article.

Portia Iversen at Beacon Day School for Children with Autism

Saturday, April 7, 11:30 am

588 North Glassell, Orange, CA

Author of Strange Son and co-founder of Cure Autism Now, Portia Iversen, will present at Beacon Day School Saturday, April 7, at 11:30 am, 588 North Glassell, Orange, CA.

Portia will talk about her immensely personal story – the heartache and pain and triumph of finally communicating with her non-verbal son using Soma Mukhopadhyay’s rapid prompting method.

Strange Son is the captivating account of these two families and how their personal journeys into autism intersected and allowed, Soma’s son, Tito to explain to scientists the startling differences in his sensory perception, giving them insights that reframed the very definition of autism. Success in teaching hundreds of autistic children presents the possibility that this could be a new form of communication as important as sign language or Braille.

Editor’s note – For parents, grandparents, and guardians looking for a school for a child with autism I encourage you to visit the Beacon Day School site here and learn more.

Washington Post: In Autism, Hope at Any Age

Sunday, March 18, 2007

By Senator

What does last month's news from the Centers for Disease Control and Prevention -- that autism incidence is now 1 in 150-- mean to me, a mother of a 17-year-old severely autistic boy? Unfortunately, almost nothing. Likewise the federal Combating Autism Act signed into law in December. That is because the act and most other autism awareness news focus largely on young autistic children, not older people such as my son. And while I am happy for the families that will benefit from the attention to increasing autism incidence and the influx of early-intervention money that all this new awareness is bringing, there is very little here that will help my son get what he vitally needs: support for independent living.

For all the autism news subscribe to the Schafer Autism Report.

AUTISM ONE 2007 CONFERENCE: Wednesday, May 23 – Sunday, May 27

ARTS FESTIVAL: A Double Feature of Cinematic Insight

As part of the inaugural Arts Festival we are delighted to present two major documentaries, Finding the Words and True Life: I Have Autism. Each presents an entirely different picture of autism, yet each is brimming with joy and triumph.

Horn writer, director, and producer of Finding the Words and two of the young men, Elijah and , featured in True Life: I Have Autism will be joining us to answer questions after the showings.

Paradiz (Elijah’s mom) and Chantal Sicile-Kira (’s mom) will be presenting during the main conference and Elijah will be performing.

No matter where you are on the autism journey you will find hope, inspiration and answers.

FINDING THE WORDS

In Finding the Words we watch parents of children once considered “hopeless” describe the amazing journeys they've taken to bring their sons and daughters back, fighting the prevailing view of autism as a disorder that is “incurable and untreatable”. Fighting the effects of what they describe as a “complex, multifactorial illness”. What is most important is that many thousands of them are winning. And children who could not speak, who could not make eye contact, who spinned and flapped and looked so utterly lost and unreachable, are now back! And in a crowd of regular kids in a regular school, they look like every other kid - talking, playing – “indistinguishable from peers”’.

The film also captures the unfolding drama of scientific discovery as doctors, pushed along by relentless parents, search for answers. The synergy we see between these determined families and the doctors who have been called to lead the scientific battle is fascinating. We see a paradigm shift in the doctor/patient model, and a great example of how treatments can be changed in the presence of urgent need.

MTV TRUE LIFE: I HAVE AUTISM

MTV's award-winning True Life documentary series turns its attention to autism.

“True Life: I Have Autism” introduces viewers to , and Elijah, three high school students whose autism is now old hat to themselves and their families. No one cries when talking about it. Instead they plan new approaches, sigh as old problems resurface and laugh often.”

--The New York Times review

About 1.5 million Americans are believed to have some type of autism, a developmental disability that impairs a person's social interaction and communication skills. In fact, the rate of autism diagnosis is rising to 1 in 150 births. Yet to most us, autism is still mysterious and we tend to keep people with autism at arm’s length. Few of us understand what autism really means, and even fewer know what it’s like to live with.

True Life: I Have Autism gets up close and personal with , and Elijah, three young people with autism. Each is affected by autism in a unique way, yet are all capable of amazing things.”

Screening Dates & Times

Thursday, May 26

6:30 pm – 7:30 FINDING THE WORDS

7:30 pm – 7:45 Q & A with producer Horn

7:45 pm – 8:00 Intermission

8:00 pm – 9:00 MTV’s TRUE LIFE: I HAVE AUTISM

9:00 pm – 9:15 Q & A with two of the young men in the documentary, Elijah and , and their moms Paradiz and Chantal Sicile-Kira.

Friday, May 27

6:30 pm – 7:30 MTV’s TRUE LIFE: I HAVE AUTISM

7:30 pm – 7:45 Q & A with two of the young men in the documentary, Elijah and and their moms Paradiz and Chantal Sicile-Kira.

7:45 pm – 8:00 Intermission

8:00 pm – 9:00 FINDING THE WORDS

9:00 pm – 9:15 Q & A with producer Horn

AUTISM ONE RADIO

Debuting Friday, March 23, 2:00 pm ET

Norm Schwartz MD: Biomedical Basics - Autism is Treatable

We now know that autism is a systemic disorder with brain and gastrointestinal inflammation, immune dysregulation and imbalanced biochemistry. The first DAN! Think Tank, sponsored by the Autism Research Institute 12 years ago, initiated a scientific and evidence-based exploration to unravel these multi-system abnormalities. A coalition of parents, researchers, and physicians had the audacity to suggest autism is treatable. Through sharing ideas and talents, listening to each other, and following the science for treatment strategies-- children improved, sometimes dramatically. For parents and clinicians, understanding the scientific basis of biomedical treatment is challenging. To assist this process, this monthly program will explore the ins and outs of nutritional biochemistry. Fortunately, there is an expert resource to guide in this exploration- Autism: Effective Biomedical Treatments by Dr. Sid Baker and Dr. Jon Pangborn (ARI, 2005). This brilliant, in depth, comprehensive book is a remarkable synthesis. This program will use this as a reference to take your understanding to the next level and assist you to be an informed partner with your medical practitioner in advocating for your child.

The first program will explore biochemical individuality and the historical development of the biomedical approach. The program will discuss sources of information and how parents can best decide what is optimal for their child--prioritizing choices and a logical sequence for interventions. The program will also look at the resistance of medical authorities to accept new ideas, and how parents, researchers, scientists, and clinicians cooperatively developed ground-breaking therapies thus demonstrating autism is treatable--shattering the myth of autism as a genetically predetermined psychiatric disorder.

Dr. Schwartz is Medical Director of Integrative Medicine for Wheaton Franciscan Healthcare in Milwaukee, Wisconsin where he is developing a multidisciplinary approach for treatment of autism spectrum disorders. He is a practicing Defeat Autism Now! (DAN!) physician with an extensive background in treating complex chronic health problems. His post graduate training includes education with the American Academy of Environmental Medicine, Santa Fe Institute for Complex Studies, Functional Medicine Institute, International College of Integrative, American Academy for the Advancement of Medicine, and he is a founding member of the American Society of Integrative Medical Practice and Fellow Health Studies Collegium.

In Search of Communication

The idea is more essential than intellectual. It revolves around the notion that we are ill-served by many of the conduits of knowledge we would depend on to provide, not only understanding, but more importantly ideas and tools to construct a better worldview.

The self-limiting concept of “knowledge as definition” is one of them. With the lack of any attempt to draw references, to cross-pollinate with other disciplines or to ground them in common knowledge tends toward the self-serving.

Every discipline needs definitions to provide structure and rigor. But in that need self-serving circular definitions pertaining only to a discipline’s own theories and concepts creates walls to shutout and shutdown a free flow exchange of ideas to those who would join the debate.

Nowhere is this circular reasoning more evident than in autism where medical symptoms (toe-walking, head-banging, hand-flapping) are defined as behaviors. To talk about them otherwise is not within the powers of the commonly accepted currency.

As a simple example, two words that immediately come to mind that need to be deconstructed and redefined in the age of autism are algorithm and Tourette’s.

Both share narrow definitions of understanding and applicability. I think we tend to shy away from their guarded exteriors with good reason. Dominated by “professional” usage has made them brittle and reluctant to change.

Algorithm was once relegated to things like recipes and directions. Given a set of instructions one could start from New York and drive to Buffalo or bake a Boston crème pie.

The majesty of the once-lowly algorithm’s recent ascent came with the realization that all logical systems of thought can be expressed in terms of algorithms. In other words, given the rules of geometry, calculus, or chess a computer can find the answer; a step-by-step logical progression to certainty.

The second word, Tourette’s, is a neurological disorder characterized by involuntary body movements and vocal outbursts for at least 12 months. The image of a person barking or swearing uncontrollably fills the imagination when considering Tourette’s.

Both words occupy vocabularies seemingly distinct from autism. But they are not. One of my sons has “Tourette’s body,” not syndrome; hand-flapping without the vocal outbursts; and my other son sometimes acts algorithmically, not logically, but emotionally – an emotional algorithm as opposed to a logical one.

Chomsky said, “In mathematics, in physics people are concerned with what you say, not with your certification. But in order to speak about social reality, you must have the proper credentials, particularly if you depart from the accepted framework of thinking. Generally speaking, it seems fair to say that the richer the intellectual substance of a field, the less there is concern for credentials, and the greater is the concern for content.”

I think Chomsky is right. And a large part of certification is definitions - knowing the “proper” usage of terms and the accepted “models” of reality. Those who are credentialed to “treat” autism do so with a vocabulary which necessarily limits drawing associations, inferences, and lessons learned from other fields of knowledge.

Once thought rare individuals with Tourette’s may now number as high as one in a hundred. Might Tourette’s share a common trigger with autism? Computer science could also be called the study of mathematical algorithms. Emotional algorithms are being studied, but, by and large, they are aimed at a subset of neurotypical behaviors. Might there be a rich vein to explore by mapping those displaying emotional algorithms with their medical history to find common triggers and effective treatments?

As we move forward and the intellectual biomedical understanding of autism increases cross-pollination with other disciplines is changing, by necessity. A new scientifically-accepted definition of autism is under construction. The new definition will have both explanatory and predictive power – the hallmarks of good science.

While the debate rages parents have, one by one, decided on their own definition of autism, one with a past, present, and future. The field of autism fueled by parental involvement has reached a point of intellectual substance. The content of the conversation is not credentialed, but communication. It’s about communication among all disciplines in helping, but most of all it’s about the joy of communicating with our own children.

Please let me know if you have any questions, comments, suggestions, or ideas. Thank you.

My Best,

Ed Arranga

714.680.0792

http://AutismOne.org

earranga@...

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