Autism One Newsletter

[Guest guest]

April 29 , 2007

Dear Friends and Colleagues

Autism in the News

Over the last six months we have been contacted by groups in France, Brazil, Qatar and Italy concerning the staggering rise in autism. Each country faces extraordinary difficulties as they attempt to deal with the epidemic.

Each country is looking to the U.S. for answers and what gives great pause and concern is the U.S. continues to export vaccines loaded with thimerosal. And the countries currently grappling with autism represent only the tip of the iceberg as many third-world countries begin to institute nationwide vaccination policies.

Chantal Sicile-Kira, director of communications for Autism One, was in Qatar to present on media as a positive change agent as well as participate as part of a panel on Cultural Considerations in Promoting Public Awareness. Thank you, Chantal for bringing the message of hope and recovery to the Mideast.

We plan to broadcast the DAN! Europe autism conference being held in Italy in both English and Italian on Autism One Radio. Stay tuned for details. Thank you, Mr. Franco Verzella for asking us to participate.

The self-righteous media swiftboating of Don Imus takes center stage for more than a week while more and more children around the world are diagnosed every day with autism – the conference in Qatar – not a word. The upcoming conference in Italy – nothing. The desperate pleas for help from Brazil and France – not worthy of primetime news.

The self-puffery by those who call themselves journalists work for the same news organizations which continually distance themselves from any honest investigation into the potential causes of autism. Caught in the circle of fame and personal fortune they orbit around power never coming too close to the truth or straying too far from corporate talking points to be mistaken for newsmen.

With the unceremonious firing of Bob in February as NBC Universal’s chairman and chief executive Imus was left to blow in the wind as exnominated groups let loose volley after volley to silence the only mainstream media person publicly challenging the safety of vaccines.

Imus committed a “crime” but it wasn’t the crude attempt at humor that got him fired – it was his insistence on asking the question every news organization should be insisting is addressed – “Why is there an epidemic of autism?”

The enemy of good is not bad, it’s perfection. By demanding Imus be pc-perfect we lost much of what has been good for our children. We lost a good man.

Imus, Autism, and America

By Kirby

Imus is gone, but not everyone is cheering. Thousands of parents of autistic children around the country are reeling at the loss of the one true friend they had in the mainstream media. For them, the silencing of Imus could not have come at a worse time. Read post.

New Autism Treatment Center Opens in Irvine, CA

The California Integrative Hyperbaric Center opened April 2nd. The center specializes in the treatment of autism and other Neurological disorders. Located in Irvine, CA offers specialized treatment and physicians dedicated to working with families with children of autism.

In addition to hyperbaric oxygen therapy (HBOT) the Center offers ntensive suit therapy, speech therapy, traditional occupational and physical therapy services, nutritional services, play therapy, social skills groups, auditory integration training, cooking for special diets, and parent support groups.

For more information contact Kenitz at skenitz@... , call 949-428-8878 or visit www.californiahyperbarics.com.

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

PLEASE TAKE A MOMENT TO FILL OUT THE SURVEY AT THE END OF THE NEWSELETTER.

Autism Society of America

If you are a member of the Autism Society of America (ASA) please consider voting for Doreen Granpeesheh, PhD, BCBA, in the upcoming election for Board Members. For many years Dr. Granpeesheh was the only applied behavioral analyst of national repute supporting the work of Dr. Rimland.

What many of you probably are not aware of is several years ago Doreen nominated Dr. Rimland for the Right Livelihood Award, which is widely known as the 'Alternative Nobel Prize' and carries with it a prize of approximately $230,000. Although, unfortunately, Dr. Rimland did not win he was deeply touched by Doreen’s efforts and faith in him, which by the way was mutual.

Dr. Doreen Granpeesheh has devoted her entire career to helping individuals with autism lead healthy, productive lives. She has dedicated 28 years to the treatment and research of autism and is known throughout the world as a leading expert in her field.

She started her prestigious career at UCLA where she worked with the renowned Dr. Ivar Lovaas. During her 12 year tenure, she assisted Dr. Lovaas on the celebrated study published in 1987 that showed a significant recovery rate among research participants.

In 1990 Dr. Granpeesheh founded the Center for Autism & Related Disorders (CARD). The organization is best known for its ability to achieve great successes in every child they treat. This is accomplished through investment in research, staff training and a comprehensive curriculum. Under Dr. Granpeesheh’s leadership, 15 full-time researchers evaluate the most effective treatment techniques.

CARD is now one of the foremost providers of ABA intervention worldwide. CARD currently provides services, via 18 clinics located in California, Virginia, New York, Texas, South Carolina, Arizona, England, Australia and New Zealand and employs over 500 highly skilled clinicians whose talent have led to CARD’s overwhelming success.

In 2005, Dr. Granpeesheh established the charity organization ACT Today! to provide financial assistance to families affected by autism. She is a principle member of the Thoughtful House Center for Children in Austin, TX and was recently appointed by the Arizona House of Representatives to serve on their Developmental Disabilities Oversight Committee.

Dr. Granpeesheh will bring the same rigor, academic excellence and business-savvy. which have produced great accomplishments to her work with ASD. Learn more about Doreen here and her qualifications to serve as an ASA Board Member.

AUTISM ONE 2007 CONFERENCE

Rooms

Our block of rooms at the Westin is full, but we have additional rooms at a special discount at the Marriott Suites O’Hare, directly across the street from the conference. Our special room rate is $117 per night plus taxes, single or double occupancy. Please call toll free 1-866-614-8410 and be sure to mention Autism One.

KEYNOTE ADDRESS: Martha Herbert, MD, PhD

is an Assistant Professor of Neurology at Harvard Medical School, a pediatric neurologist at the Massachusetts General Hospital in Boston and at the Center for Child and Adolescent Development of Cambridge Health Alliance and a member of the Harvard MIT MGH os Center for Biomedical Imaging.

Next steps with the new autism paradigm: science, infrastructure and horizons

The framing of autism as a whole body condition deriving from gene-environment-epigenetic interactions with treatment and recovery possibilities is advancing on multiple fronts. New science is being published and more is on the way to substantiate this approach. Parents, practitioners, and researchers are coalescing to organize more coherent infrastructure to support and advance this work. The heterogeneity of the condition along with deep physiological overlaps with many other disorders reveal limitations in standard models of experimental design and clinical trials, but also suggests that powerful alliances may become possible in rising to these challenges.

More Great Speakers

Kirby, author of Evidence of Harm, presents:

A Pre-Trial Briefing: Mercury, Vaccines and Autism

This session will provide an up-to-the-minute update on where things stand on the eve of the historic VICP ("Vaccine Court") causation trial in June in Washington, DC. Kirby will address many of the recent, very contentious issues that have arisen around this debate – including new neuron-toxicity data, new genetic studies, updates on the recent Senate HELP Committee Hearing and the IOM Workshop on environmental causes, and a sober assessment of the numbers in California – do they spell the end of the Thimerosal hypothesis, as many critics contend? Kirby will also discuss recent events in the mass media, including Don Imus, Oprah Winfrey, and the public statements of .

Deborah Zelinsky, OD, FCOVD of The Mind-Eye Connection, presents:

Awareness and Attention: How To Use Visual Clues To Enter The Autistic's World

People on the autistic spectrum do not interact with the outside world in an expected manner. The visual systems provide clues to help analyze this atypical communication between the constantly changing environment and their minds. Dr. Deborah Zelinsky will demonstrate how those clues can be used to help perceive the world from the autistic person's outlook.

Guissepina Feingold, MD, presents:

The Application of Sensory LearningSM in Children with Learning Disabilities and Autism

This presentation will look at how auditory stimulation, visual stimulation, and vestibular stimulation has an impact in children and adults on the autistic spectrum and brain damage. Stimulating the brain can have a large beneficial impact for those with autism, stroke, and other brain injuries. It is important to try tools such as this to rehabilitate any child or adult who has had an insult to the brain.

AUTISM ONE: AFTER-HOURS

We only get the chance to talk a few times a year. This year we are going to extend the hours of the conversation. Chat and relax with fellow parents Thursday, Friday, and Saturday nights from 11:00 pm until ? Location: Director's Suite - Lower Level – BYOB.

PRE-CONFERENCE DAY: WEDNESDAY, MAY 23 - CULINARY HEALTH

As parents we want the best for our children. Diet plays a huge role in our children’s recovery. Attend Autism One’s Culinary Day and learn the reasons food can cause problems and solutions. Discover what’s good about all the diets: GFCF, SCD, Body Ecology, Low Oxalate and more. You can make informed choices about what is the best course of action for your family.

Guest presenters Betsy Hicks, Pathway’s Medical Advocates www.pathwaysmed.com, s, Certified Nutrition Consultant www.healthfulliving.org, Sueson Vess, Special Eats www.specialeats.com will discuss diet options and other food insights. Join us for cooking demonstrations of all diets with food sampling; meal planning session and a panel discussion “Ask the Chef” to answer your questions.

Proposed Autism One Culinary Day Schedule:

Intro by Sueson Vess, Betsy Hicks and s

Discussion: All the reasons food can cause problems

What’s good about all the diets

GFCF

SCD

Body Ecology

Low Oxalate

Basic nutrition facts including

Balance intake of protein, carbs and fat

Organic produce, Clean water

Healthy grains

Quality animal protein – free of antibiotics, hormones, free range, grass fed, etc

Food intolerance – potential sources and how to overcome

Other Food Insights

Fermented foods

Soaking nuts, seeds, grains

Coconut Oil

Importance of balancing Ph

8:00 - 9:30 AM

Meal Planning 101 (same for any diet)

Sueson, Betsy,

9:00 - 9:30 AM

Break

10:00 - 10:15 AM

Nutritious GFCF Cooking Demonstration

including tips for how to serve meals so that kids will eat and enjoy mealtime

Breakfast:

Homemade granola

Sautéed breakfast: kale, tomatoes, sweet or regular potatoes

Lunch:

Homemade tortilla with a variety of fillings, falafel, hummus, ground chicken, grated carrots, olives, sunflower seeds, pepitas, etc.

Dinner:

Fried chicken, cauliflower rice (variety of seasonings)

Dessert/Snack:

Granola bars

Pudding vary flavors/ingredients use as behavior modification and to assist with supplements

10:15 - 12:30

Lunch break on own

12:30 - 1:30 PM

Nutritious SCD (and more) Cooking Demonstration

including tips for family integration

Breakfast:

Homemade almond yogurt

Smoothie using yogurt

Main Courses (lunch/dinner friendly):

Squash meatballs

Sauerkraut

Salad with chopped veggies (salad dressing using sauerkraut juice)

Dessert/Snack:

Cashew Crackers (Sandy’s)

Homemade almond butter

Coconut-Date Balls

Fizzy Soda

1:30 - 3:45 PM

Break

3: 45 - 4:00 PM

“Ask the Chef” Q & A – all diets and presenters available to answer questions

4:00 - 5:00 PM

PRE-CONFERENCE DAY: THURSDAY, MAY 24 – FAMILY HEALTH

If you are attending the Family Health Day and have would like to share some of the positive aspects of how autism has impacted your life please contact me, Ed Arranga, at 714.690.0792 or earranga@....

Shining Day

There are other issues I would like to address, like Kennedy’s compounding legislative initiative, the industrialization of our community and the ongoing series regarding science and autism. For now – for the moment – I need to share a different story.

With autism it seems we must retouch our steps in a continual questioning more often than other parents. “Did I handle that correctly?” “Should I have been more forceful?” “Less forceful?” “Do I introduce this treatment now?” “Do I wait?” “How long?” Then there are the shining days.

There are no questions, no doubts during shining days, only answers. My shining day happened a week ago, when I took Ian for a haircut. Ian is 8 and does not appreciate the sensory assault of noise and touch whirring around his head.

Holding Ian in my lap and attempting to pin his arms down and hold his head semi-steady to avoid a Zero Mostel “do” is almost comical as the hairdresser feints and jabs attempting to find a clear cut at unopposed hair. Sometimes the hair is mine, sometimes it’s Ian’s. The air fills with a fine hair mist as slowly but surely the best efforts of three adults hold sway over the objections of one 8-year-old boy.

Teri, Ian’s mom, and I are almost gleeful. This haircut has gone remarkably well. Ian looks very handsome with his new haircut. Both ears are still attached to all participants. Noses are intact. , the hairdresser, however, will probably be taking an early lunch at the local Bar & Grill where margaritas are half price until 5.

Out of the corner of my eye I see Jarad, my 12-year-old, rapidly approaching me. His eyes are red and tear-filled. He is shaking as he shakes his finger in front of my face. “You don’t do that.” Jarad is almost apoplectic as he admonishes me. “You don’t hold my brother like that.” “You let him go.”

I glance around the room looking for the disapproving glares that usually accompany any autism outburst. In the corner two women are crying. They have seen the entire episode.

My heart fills with pride. I think it might break. My son has stood up to me, directly challenged me and come to the aid of his younger brother, his stepbrother of 7 months.

As I attempt to explain the circumstances to Jarad the answers to a million unanswered questions coming rushing back at me. Jarad understands what is right and what is wrong. He is emotionally connected to good. And most importantly, Jarad will put himself in a position of jeopardy to protect others.

Ian has a brother who will protect him and I can stop worrying about the little things and instead concentrate on nurturing Jarad’s understanding of the world.

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@...

Informal Survey on Therapeutic Approaches in Use By Individuals

with Autism Spectrum Disorders

Please Respond by May 15, 2007

- Survey Results to be Discussed at Autism One - Including Next Steps

Three Ways to Respond: Email to: info@...

Fax: 1-202-318-7557 or

Mail: 3470 Olney Laytonsville Road #187, Olney, MD 20832

Beth Clay became involved in autism policy in 1999 when she led the

Congressional hearings and investigation with Congressman Dan Burton. Now

in the private sector, she is conducting an informal survey to learn more

about the therapies that families living with autism spectrum disorders are

using. The gathered findings of this informal survey will be made public by year's

end.

Please post this survey on your discussion groups and share freely with

families living with autism spectrum disorders. Thank you in advance for

your assistance.

Updated Background Info: Preliminary information to be discussed at Autism One.

I have been asked and want to clarify several points. (1) Any personal information provided will be kept confidential. (2) I am gathering this information in an ‘informal’ manner and not on behalf of an organization in order to broaden my understanding of the actual products and therapies utilized by families during the lifespan. I am increasingly asked to speak and write about these issues and feel it is important to get direct information and see if it corelates to what I’m learning from published reports. (3) My goal is to help improve research in and access to to therapies that are working for families, to have expanded data from which educate policy makers, and to do my small part to improve the lives of families living with autism. I appreciate your assistance in sharing this survey. I would like a large response so that I can speak with confidence about the findings. Beth

Informal Survey on Therapeutic Approaches in Use By Individuals

with Autism Spectrum Disorders (ASD)

Launched March 15, 2007 Please Respond by May 15, 2007

Three Ways to Respond: Email to: info@...

Fax: 1-202-318-7557 or

Mail: Beth Clay - 3470 Olney Laytonsville Road #187- Olney, MD 20832 USA

(If handwriting, please print clearly.)

I. Responder Details:

Survey Responses Prepared by: ___ Self ___Mother ____ Dad

___ Grandparent ____ Other Caregiver

II. Individual: This individual lives in _____________________

(City,State, Country)

Actual Diagnosis: ______________________________________

Current Age:__________

_____Classical Autism (from Birth) or _____ Acquired Autism (Age of Onset

____)

Other Medical Conditions Diagnosed:

__________________________________________________________

Age at Diagnosis: ________ Gender: ___Male ___Female

Culture/Race: _____________________

Verbal: ___ Yes _____ NO ____ Limited

How Many Siblings ___ brothers ____sisters If so:

Are any of these siblings diagnosed with an autism spectrum disorder? ____

or ADD/ADHD? ____

III. Behavioral Therapies Currently in Use:

1. Please list the current behavioral conditions (such as Lovvas or ABA).

2. Provided by _____public school system _____ private school program _____

in the home _____in a medical or treatment center _____ by parent or family member

3. Payment _________ covered in IEP __________ covered by insurance _____

covered by MEDICAID _______ paid for out of pocket _____ services donated

4. Explanation if desired:

Behavioral Therapies Previously Used:

5. Please list the previously used behavioral conditions (such as Lovvas or

ABA)

6. Provided by _____public school system _____ private school program _____

in the home _____in a medical or treatment center _____ by parent or family member

7. Payment _________ covered in IEP __________ covered by insurance _____

covered by MEDICAID _______ paid for out of pocket _____ services donated

8. Explanation of why treatment was suspended or changed:

9.What objective measures do you use to measure success of behavioral therapies?

(i.e. additional words in vocabulary, ability to dress, use the toilet, etc.)

IV. Dietary Supplements

Dietary supplements (vitamins, herbs, minerals, etc.) are widely used in the autism community. Please provide a list of products current being used and specific condition or behavior you are using the product to address (vision, chelating metals, behavior, specific diagnosis, etc.)

10. In Current Use

Product Dose per day Brand Condition

12. If you previously used products that are no longer in use, did you suspend use because the condition __was resolved, ___ because you felt the product didn't work, ____because of an adverse reaction to the product, or other reason? Please explain:

13. How do you generally decide to use products?

_________Prescribed by a Physician

_________ Prescribed by another health care professional

_________ Recommended by a friend _________ Heard about it on the internet

_________ Heard about it at a Conference ____ Speaker ____ Booth ___ Attendee

_______ Read about it in ____ book ____ magazine ____ newspaper ___

catalogue

Other, Explain if desired:

14. Do you want the National Institutes of Health to conduct or fund research evaluating the _____ safety and/or _____ efficacy of dietary supplements in relation to autism spectrum disorders and related conditions? If s! ! o, on a scale of 1 to 10, how high a priority is this for you? ___________

15. Do you want the autism and disability philanthropic community (such as ASA, Autism Speaks, etc.) to fund research into the _____ safety and/or _____ efficacy of dietary supplements in relation to autism spectrum disorders and related conditions?

16. Do you have a priority for specific products you would like evaluated?

___ YES _____ NO If so, which product(s):

17. Current Approximate Monthly Cost for Dietary Supplements: __________

18. Is this more or less than this time last year? __________

V. Complementary and Alternative Medicine (CAM) Therapies

19. Do you now or have you every included CAM therapies in your treatment

regimen? ___ YES ____ NO

Please check if the following therapies are being used or have been used and

the approximate age of use and whether you had a positive outcome with the treatment. (Feel free to elaborate as t o desired outcomes, actual experience with practitioner, and other details as desired.)

20. Approach Age Positive Outcome?

_______ Acupuncture

_______ Biofeedback (or Biofeedback accessory devices)

_______ Chiropractics

_______ Homeopathy

_______ Music Therapy

_______ Massage Therapy

_______ Rolfing or other body based therapies

_______ Hyperbaric

_______ Reiki, Touch Therapy or other Energy Healer

_______ Ayurveda

_______ Sweat Lodge, Sauna, or other sweat inducing protocol

_______ Traditional Oriental Medicine

_______ Traditional Medicine of another culture ______________

_______ Colonics

________ Other, please detail:

21. Do you want the National Institutes of Health and its National Center

for Complementary and Alternative Medicine to conduct or fund research evaluating the _____ safety and/or _____ efficacy of CAM theraies in relation to autism spectrum disorders and related condit ions?

22. Do you want the autism and disability philanthropic community (such as ASA, Autism Speaks, etc.) to fund research into the _____ safety and/or _____ efficacy of Cam therapies in relation to autism spectrum disorders and related conditions?

23. Do you have a priority for specific therapies you would like evaluated?

___ YES _____ NO If so, which ones:

24. Where you referred by: ____ Physician ____ Other Health Care Professional

___ Family Member ____ Other Autism Parent ___ Conference _____ Online ___Self Referral____Other Please Explain:

25. Where these treatments paid for by _______ Insurance ________ Medicaid

____ Out of pocket _____ donated __________ Other, Please Explain:

26. Was the use of a CAM therapy specifically for the diagnosis of autism?

_____ YES ____ NO

(Chiropractic for back pain for example would be a non-autism diagnosis) .

27. Approximate Cost for last 12 months for CAM therapy Use: ________

VI. Special Dietary Approaches

28. Is the individual currently on a special diet? ______ YES _____ NO

29. Type: ____Gluten Free ______ Casein Free ______ Organic Other: ________

30. How long on the diet? ________ Are their noticeable improvements in symptoms? ______ YES _____ NO

31. Is this diet the result of a diagnosed food allergy (i.e. celiac disease)__ YES____ NO

32. Have you previously tried a different dietary approach? __ YES ____ NO

31. How long was the previous approached used? _________________

32. What precipitated the change?___________________________________________

VII. Physical Therapy and Exercise

33. Are any physical therapy, occupational therapies currently used?

___ YES ___ NO Please describe:

34. Trampoline ___ YES ___ NO

35. Participate in any Team Sports ___ YES ___ NO Please describe

(including where offered - i.e. school, club, non-profit like NYFAC or YMCA, etc.):

37. Individual Sports ___ YES ___ NO Please describe:

38. If school age, has the individual involved in any sporting events in

school? ___ Yes ___ NO

VIII. Spirituality and Religion (for parents response only)

39. Do you consider yourself a religious person?

__ YES __ NO__Spiritual but not Religious

40. After having a child who was born with or developed an autism spectrum

disorder, did your church attendance change? _____ YES _________ NO

(______ Increased ______ Decreased ____ Ceased)

41. Do you find comfort in prayer? _____ YES ___________ NO

IX. Prescription and Over the Counter Drugs

42. Are Any Drugs Currently Prescribed? ____ Yes ___ No Please List:

43. A pproximate annual cost for medical serivces, drugs, and therapies. _______

a. ____ % insurance

b. ____ % MEDICAID

c. ____ % out of pocket

d. ____ % donated

X. Please check all that apply

44. I believe this individual developed autism as a result of a vaccine injury. ________

45. This individual has been diagnosed with mercury toxicity. ________

a. Other metals as well. ______________ (Please List____________________________)

(Please describe how verified.______________________________________________)

46. This individual is using or has utilized a Chelation Therapy. __________

b. ___ IV Chelation

c. ___ Oral Prescription Chelator

d. ___ Oral Dietary Supplement Chelator

e. ___ Topical Chelator

f. ___ Suppository Chelator

g. ___ Other (Please explain)

47. This individual has been diagnosed with an inflammatory bowel condition._____

48. This individual has been diagnosed with post MMR measles infection. _____

(Please describe how verified.______________________________________________)

49. This individual is currently on a Medicaid waiting list? _____

50. The parents of the individual with autism remain married (or together).___

NOTE: DEADLINE HAS BEEN EXTENDED TO MAY 1.........

Please Respond by to May 1 if possible (post May 1 surveys will be gladly accepted) Three Ways to Respond: Email to: info@... Fax: 1-202-318-7557 or

Mail: Beth Clay, 3470 Olney Laytonsville Road #187, Olney, MD 20832 USA

You assistance in this is greatly appreciated. All individual-specific

information will remain confidential. Please do not worry if the formatting

becomes distored. Feel free to insert additional lines or information. If

you wish to receive information as a follow up, please insert an email

address here: _______________________________________

To be removed from this list please reply with " Remove " in the subject line.