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Early in my teaching career (beginning in 1969), I demanded eye contact from my students…. but only when confronting one about inappropriate behavior. Back then it seemed to me that kids were supposed to make eye contact to prove they were listening to you. That is false. Demanding eye contact is – and remains to this day – a power struggle between adult and child, teacher and pupil, employee and boss.

What I learned from my students was that many of them found it difficult, if not impossible, to avoid eye contact or they would not be able to focus on what I was saying… regardless of the nature of our interaction. After finally understanding this, why would I ever demand that ANY student look me in the eye.

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Cloud-burst.tv is a new website dedicated to promoting tolerance, acceptance and inclusion of people with autism through the inspiration of Literature, The Arts, Music and Media. CBTV supports The Art Of Inclusion, a novel project challenging the public to contemplate autism by completing an unfinished work of art appropriately entitled BareFace. Over the past four years more than 100 celebrities and public figures have met the challenge  adding their own creativity to produce co-artist work that has drawn crowds to dozens of museum and galleries in Germany and Australia.  Recently BareFace was used by The Madison House Foundation – an influential organization providing support for young autistic adults – to promote a fundraising event and a month-long exhibition of 200 works by 40 spectrum artists. For information about how this project can help attract attention to your organization’s outreach events by contacting Michael Leventhal at InfoCloudBursttv@gmail.com or use the form below

Links:
Fox New coverage of the Madison House exhibit
Cloud-Burst.tv
Madison House
Artist Gee Vero

contemplating autism

contemplating autism


There is a glaring disconnect between what we understand about Autism and how we as a society apply this information to improve life.  So, how do we change the world? By sharing information… one project at a time.

Just as autism can be described by a spectrum of behaviors, so too can the autism community be described by the various agendas of many special interest groups. In this era of instant communication, their combined activity has increased our base of shared knowledge.

Knowledge alone is not enough to bring about significant change. Action is still required. In the United States and other countries possessing a sophisticated infrastructure, change is largely a matter of juggling financial and procedural hurdles.  Our growing understanding will continue to correct misconceptions, attitudes and ultimately our social systems.

However, elsewhere people are not sharing in this renaissance.  In fact, most people on the spectrum live in countries that do not recognize the humanity of autism.   Most do not provide education or support services for families.  Outcasts in their own countries, unable to obtain public services or afford private attention, families and advocates are desperate for even the most basic information.

Where there is a will….…  As a former teacher turned Internet reporter and editor of the online magazine The Omni Intelligencer , Kathleen Tehrani was acutely aware of the gravity of this problem.  She recognized that in these places even simple, practical information was almost impossible to get.  She envisioned a website that would connect people with knowledge and experience to connect directly with others who really needed it.

With crucial support from mutual friend Tom Schiff, Kathleen,Marc Brenner and I created AutismBrainstorm.org, a free online community designed to accomplish her dream. This website provides three key functions that enable people with questions to connect directly with people who have answers.

1 – ACCESS TO INFORMATION
The Human Spectrum Magazine – Monthly, multiple experts weigh-in on a common theme

2 – SHARING AND DISCUSSION
The World Cafe – An informal meeting place hosting chat and formal webinar rooms for special interest groups

Some of the voices heard on the aB site:  Dr. Stephen Shore, Craig Evans, John Elder Robison, Dr. Robert Naseef, Brian King, Ann Millan, Lars Perner, Keri Bowers, Dr. Stacy Goresko, Anita Lesko, Jane Ferris Richardson, Joanne Lara, Shelly Tzforfas, David Geslak, Michael Woods, Ann Roberts, Susan Diamond, Erik Estebrook, Donna Williams, Frank Louis Allen, Paul Issacs.

3 – IDENTIFYING VALUED PROJECTS
The Kindness Zone –  Identifying projects with immediate and long-term benefits that have a high probability for success.

… there is a way.   Eighteen months after launch and due entirely to Kathleen’s vision and determination, we can announce a milestone.  The Kindness Zone is now featuring two worthy projects for education.

The Ashish Foundation
In a culture that stigmatizes those with intellectual challenges, The Ashish Foundation (501-c) stands out as a voice of reason and compassion.  Since it’s 2007 opening with 7 children, it has grown to include critical training and therapies for 40 children with autism in the New Delhi area who would not otherwise attend school. Assuming the 2001 Indian Census estimate of autism incidence to be correct,  1 out of every 500 people calling New Delhi home is an autistic citizen… altogether more than 20,000 strong.

Their problem. In India, misinformation about mental disability, mental illness and physical impairment is rampant. Mental impaired is associated with diminished intellectual capacity, illiteracy, the inability to  satisfactorily performing valuable  work.. 71% of ‘mentally impaired’ females are illiterate.  And, because autism is NOT covered by the Disability Act of India, millions of people lack of support, diagnosis, and intervention services. Professional services are prohibitively expensive.

Their role.  Ashish fills an important need for affordable, qualified autism services to children as well as working with the community to help change hearts and minds.

Their goal.  $5000 to hire and train additional staff as well continuing their community outreach workers to work with families.

Learn more about the ASHISH FOUNDATION
View their fundraiser

The Caroline Wambui Mungai Foundation
Caroline Wambui Mungai born, Kenya attended Adelphi University in New York pursuing her Master’s degree in Early Childhood Education. Her dream was to become a teacher and eventually desired to start a school to help children from disadvantaged backgrounds. What began in 2005 as an orphanage occupying a four bedroom house donated by the Mungai family has blossomed into a model K-12 school with residential facilities serving 40 children from five Kenyan provinces of Kenya and Tanzania.

Their problem. The Foundation, a 501(C)3  not-for-profit tax-exempt organization registered in New York and in Kenya, need funds to maintain a residence and school for 40 orphans and vulnerable children in Wangige, Kenya.

Their role.  Providing destitute, orphaned children with the help they need to become productive and responsible citizens.

Their goal.   $5000 to help subsidize academic grants for qualified and needy students  

Learn more about The Caroline Wambui Mungai Foundation
View their fundraiser 

Please support these worthy causes. By helping these foundations to achieve very modest goals, you will be insuring that invaluable services will continue to be received by those who need it most.

Please visit AutismBrainstorm to find other projects.  Meet people worldwide. Advise a family. Volunteer your time.   …….and don’t forget to pass this information along to others.


The choice to substitute formulations has much to do with its intended purpose, severity and economic factors.  However, when it comes to autism, substitution must also consider individual biology.  
Here is what Wiki Answers has to say:
“It is also important to note that the amount of drug which makes it into the bloodstream (bioavailability) can vary significantly for generic drugs; the bioavailability of generics is required to be within 20% of the branded drug, meaning it can be 20% lower to 20% higher. This can make a significant difference for drugs which are very dose-dependent. Also the amount of active ingredient in the generic only needs to be within 7% of the branded drug. All in all the generic might end up quite a bit less or more potent than the branded drug.”
“Two drugs are considered pharmaceutical equivalents when they contain the same chemically active ingredient(s) and are identical in dosage form and strength. Tetracyclines such as minocycline are complex with many properties that may play an important part in treatment response in the arthritic patient. The fact that patients in remission (sometimes for years) while on antibiotic therapy saw a gradual return of symptoms when switched to a generic alerted us to a potential problem with some generics. In three test patients, these symptoms began to reverse immediately upon a return to the brand name version of the drug.

Pharmaceutical equivalence may be affected by many things.

  1. variations in inert ingredients
  2. plants in different parts of the world may produce ingredients that vary in quality, by batch and manufacturing methods. Until recently (this article was published in September 18, 2008), 80% of drug ingredients came from plants in Western Europe. According to a NY Times article April 11, 1996, that is changing. Many ingredients are now being used from plants in China, Japan, South Korea, India and Eastern Europe where they are produced more cheaply. Bob Milanese, president of the National Association of Pharmaceutical Manufacturers, indicates that only a handful of these plants meet FDA standards. “Some others are questionable” due to the difficulty in finding people and budget to “get over and inspect these plants.” Another factor which affects generic quality cited by the same article is the international buy outs and diversification allowing the combination of questionable ingredients into generic production.
  3. In oral drugs, capsule content may be 7% over or 7% under the stated content, e.g. a 100 mg. capsule may be as low as 93 mg. or as high as 107 mg.

Given all this, the difficult task of determining the appropriate dosage of a specific drug for a specific patient seems to an impossible task, destined to fail.  This does not make sense for anyone involved… including the insurance companies who will have to foot the bill for emergency services and therapy that might have been avoided had the proper meds been used.  I acknowledge the need to contain medical costs.  But the savings achieved by substituting generics, frequently can not justify the increase in unnecessary human suffering.

There is a great deal of information (both good and bad) on the Internet.  My recommendation is to have an open discussion with your doctor about your options.

The March edition of HUMAN SPECTRUM MAGAZINE is now online.

Please join our mailing list to be notified when the April edition is made available and to access all the other activities the Autism Brainstorm community site offers

Go here if you wish to join us right now<a

Visit our Facebook page to meet some of our amazing friends

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Autism Brainstorm.org is an interactive online community celebrating the abilities of everyone on and around the autism spectrum. It is an inclusive environment for persons on the autism spectrum, their family and caregivers disseminating information,  fostering social interaction and philanthropic opportunity.

Autism Brainstorm intends to provide opportunity for healing, enlightening and entertaining social interaction within a virtual environment. From the comfort of one’s own home, individuals will be able to reach across the state, the country and the world….to positively impact the lives of others.

Autism is more than a cruel disappointment for men. It is a deep pain that can lead to isolation, self-hate and even cruelty to those closest to us.

Cinematographer Charles “CJ” Jones has walked the walk and now he’s talking the talk. His film Autistic Like Me; A Father’s Perspective tackles men’s issues head-on in a cinéma-vérité style that is poignant, powerful and punchy.

I met “CJ” when he appeared, camera in hand, in response to my request of WNYC Media  for a good videographer to document Dr. Stephen Shore’s presentation at a Mt. Sinai Medical Center autism conference in April. We discussed his vision for the film and the need for an associated community outreach program capable of helping men cope with their unique concerns and fears. Since then, “CJ” has teamed up with Robert Naseef and crack film production pros.  I am pleased that the project has progressed so rapidly.

Superficial men’s issues appear unique while, in fact, they are inexhorably tied to the larger public discussion of family issues. I will be calling upon “CJ” for his assistance with the public outreach services I am planning for use in Saudi Arabia and Southeast Asia.

For now, I’ll let the film speak for itself.

CJ & Malik

Autistic Like Me: A Father's Perspective

http://www.autisticlikeme.net