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Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. TACA does not engage in lobbying or other political activities.

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TACA E-Newsletter

December 2009 #3

Here is your update on TACA (Talk About Curing Autism). If you are new to our site... WELCOME! This newsletter is produced two to four times each month.

We are an autism education and support group. We want to make this e-newsletter informative for you. As always, contact us your thoughts and/or questions so we can improve it.

We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to autism. Our main goal is to build our community so we can connect, share and support each other.

Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.

1. Find a TACA Meeting

Come to a TACA Meeting!

TACA holds monthly meetings in many locations throughout the United States that feature educational speakers on important topics and allow family members to connect with one another and stay on top of the latest information in the autism world. Each TACA group maintains a resource library of the latest autism books, CDs and DVDs that can be checked out by members at no charge.

Check out our group listings: each contains information on TACA meetings and special events as well as a contact form.

Are you wondering what happens at a TACA meeting? Watch our video.

2. Join Us for Coffee Talk!

Come and receive some extra support or to chat all topics related to autism and meet other TACA families at these informal, monthly get-togethers.

› Birmingham, AL
› Huntsville, AL
› Bakersfield, CA
› Burbank, CA
› Long Beach, CA
› Orange County, CA
› Redlands, CA
› Visalia, CA
› Indianapolis, IN
› Glen Burnie, MD
› Gaithersburg, MD
› Hamilton, NJ
› Las Vegas, NV
› Virginia Beach, VA

3. Daily Autism Updates for Families

All news related to autism:  

For daily updates to all autism legislative issues: ChangeforAutism.org

AgeofAutism.com

4. New Autism Statistics – CDC: One in 110 American Children has Autism

Talk About Curing Autism Statement & Analysis

December 22, 2009
Prepared by Rebecca Estepp

The Centers for Disease Control and Prevention (CDC) announced on last Friday their newest Autism prevalence findings. In a report published in the December 18, 2009 issue of the Morbidity and Mortality Weekly Report (MMWR), the CDC stated that one in every 110 children (or approximately one percent of children) has been diagnosed with autism.  As seen in past reports, rates amongst boys continue to be higher than girls. One in 70 boys holds a diagnosis compared to only one in 315 girls is diagnosed on the autism spectrum. Read the full study in the MMWR.

The data collected for this report was taken from 11 different sites from the Autism and Developmental Disabilities Monitoring (ADDM) network. The data was extracted from screenings of health and educational records in 2006 from 8 year olds (birth year 1998). The CDC previously looked at autism rates of 8 year olds in 2002 (birth year 1994). In the span of just four years, the rate of autism in the United States increased by an alarming 57 percent.

How Does this study compare to the October 2009 MMWR Journal of Pediatric Report?

This MMWR report resembles an earlier study released last October in the Journal Pediatrics. Pediatrics found the autism rate to be one in 91 children, just above one percent of American children. The slight difference in prevalence numbers between these two reports are due to different methodologies in data collection.  The data in the October Pediatrics report is newer (2007) and looked at children born in a range of years (1990-2004) versus looking at just  one-year-birth cohort like the MMWR report. These two reasons most likely explain the higher incidence rate from the Pediatrics Report. Since the Pediatrics data is more current, TACA will continue to use 1 in 91 prevalence rate in our literature. Read more about the October Pediatrics report.

The CDC Explains the Report to the Autism Community

In addition to the announcement and release of the MMWR on Friday, December 18, 2009, the CDC also held a conference call for interested parties. Catherine Rice, PhD, from the CDC and Corresponding author of this study hosted the call. Dr. Rice referred to autism as a “significant health issue” that will receive a “concerted and strong response” from the CDC. Those two terms were not explained in any detail. This left many on the call to wonder what action will be taken by the CDC due to these higher rates. Dr. Rice did acknowledge that “environmental factors” are implicated in autism. She also stated that the CDC recognizes “there are multiple causes of Autism.” During the question-and-answer period of the call, Dr. Rice was asked if the CDC would ever consider declaring autism an epidemic. She answered that epidemics are only declared for infectious diseases and for health conditions like obesity that affect a larger percentage of the population.

“A True Increase Can Not be Ruled Out”

Perhaps the most interesting part of the community phone call was Dr. Rice explaining her theories on the dramatic autism increase. She felt that better detection and methodologies, especially amongst the Hispanic and female populations, were partially responsible for the increase. However, she did concede that a “true increase cannot be ruled out.”

It is very interesting that Dr. Rice did not say, “The rates indicate a true increase.” She decided to use a double negative to gingerly broach the subject of a true autism increase.  As the saying goes, Dr. Rice “would neither confirm nor deny” a true autism increase. This leaves families affected by  autism wondering if the federal government is actually acknowledging the alarming increase and will take meaningful action to investigate what environmental factors are at play in causing the autism epidemic.

The “Burden of Proof:” Other Views on the Autism Increase

The M.I.N.D. Institute at University of California Davis has documented the sharp increase in autism. In January 2009 the Institute found that the increase in autism cannot be explained by either changes in how the condition is diagnosed or counted. Irva Hertz-Picciotto, PhD, is an internationally renowned environmental epidemiologist and one of the authors of the M.I.N.D. Institute’s study. According to Dr. Hertz-Picciotto, "It's time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California." Read more about this ground-breaking study.

Also, in a very timely interview, journalist David Kirby recently spoke to Dr. Thomas Insel, Director of the National Institute of Mental Health and the head of the Interagency Autism Coordinating Committee (IACC), last Friday. Dr. Insel stated, “"As far as I can tell, the burden of proof is upon anybody who feels that there is NOT a real increase here in the number of kids affected." Read more from David Kirby’s interview.

Dr. Robert Sears, pediatrician and author of The Vaccine Book, wrote a Huffington Post titled, “Wake Up Medical Establishment: There’s an Autism Epidemic!” His post was written in response to the CDC’s unwillingness to recognize the scope and extent of the autism crisis in America. Read more from Dr. Sears.

So where does this leave us?

Is some respects hearing the terms “environmental factors,” “multiples causes of autism,” “a true increase can not be ruled out” are steps in the right direction for the CDC. However, this recognition of the overwhelming statistics from both state and federal agencies is ten years over due.  Age of Autism Editor, Mark Blaxill, was featured on Foxnews.com last Friday. He spoke of his frustration with the CDC, “I’d offer that the CDC is doing a terrible job on autism.” Read Mark’s interview.

Dr. Bob Sears ended his Huffington Post with a very strong quote,”Denying the epidemic is like a slap in the face of every parent and child affected. Wake up America! It's time to get to the bottom of this!”

TACA could not agree more. The federal government should take immediate action to determine what environmental factors have caused the alarming and overwhelming increase in the prevalence of autism among American children.

5. Personal Note from TACA Executive Director, Lisa Ackerman

As we wrap up 2009, I cannot believe another year is coming to a close.  This past year, I only managed to write 2 personal notes for the e-newsletters that now reach close to 19,000 homes and businesses each month. I wish I had more time to share with you more about TACA and the life of a boy named Jeff. Much has changed and we have a great deal to be thankful for this year.  I love the fact that as the year is about to close I have the chance to reflect, advise and thank people for their continued support of TACA, our mission and the families we serve.

Weekly, I receive a lot of emails asking how Jeff is doing, so I will start with a Jeff update:

My son Jeff, now 12 years old, continues to progress and be a joy and blessing to our family. He still receives education in a typical 6th grade class. He is doing well, but struggles with aspects of reading comprehension, listening and responding to group instructions, questions and math reasoning.  For Jeff, each year that passes, we still see great improvements – once again, the window does not close for him (or for any of our kids.) Jeff persists to rise to meet the challenges with a smile on his face and a spirit that many love.

This year some of our Jeff highlights include:

• Introducing the B-52’s at Jacks Fourth Show in front of 16,000 fans.
• Advancing to green belt/blue strip in Tae Kwon Do Karate (Shaolin Kempo.)
• Participating in the selecting, researching and writing about a person who has helped society and made positive changes. Jeff selected (by himself) and wrote an amazing essay on Lance Armstrong (yes, he got an “A”!)
• A sense of humor that will bring down the house with laughter.
• Winning student of the month at his school in October.
• A gaggle of friends who want nothing but to love and support Jeff.  I asked a friend why they liked Jeff so much and they said “I can always count of Jeff. He will always be my friend and is always there to tell me hello and be a true friend. I can count on him more than any other friend.”  This brought me to tears. He is a great friend.
• Going away one week to outdoor Science Camp with classmates – one full week away from mom and dad!
• He inspires me each day with a great attitude, constant smile and demonstrates that miracles really do happen. I have a lot to learn from this boy.

I share these stories about Jeff with other families affected by autism because we were told many times “there is no hope, no cure.” Now ten years later, TACA families continue to tell staff and volunteers the same prognosis was given to their child.  Families need to know there is much hope and regardless of the current age or condition of their child – there is a great deal you can do that will make a difference.  TACA is here to help show you the way.

Now on to TACA! This year has been a blur of activity – here is our 2009 update:

TACA received a couple of awards this year. I was grateful to accept the Leaders of Integrity Ethical Edge Award as it was a huge honor and represented the hard work that TACA does for some amazing and hard working families.

Some of the TACA Program highlights include:

• Adopt-a-Family Holiday Campaign – this year we adopted close to 200 families. (Last year – TACA adopted 75 families.)  This program, our Scholarship Program and the Autism Cares grants have been overwhelmed unlike ever before. The economy has hit families with special needs children extremely hard and we are struggling to meet that need.  The letters we have received express a level of gratitude, and indicate that for many of these families, this was their only gift for the holidays.  We will be sharing some of these stories with you in the near future.
• Real Help Now Live Chat  - over 1,500 Live Chat sessions occurred on the TACA website answering thousands of real time questions for families in need. This program was completed with a mostly volunteer group of parents and has been an amazing tool- to be the real help now when people need it the most.
• Chapters & Meetings – 27 chapters held over 250 meetings across the U.S. providing support to TACA families.
• TACA provides nine other programs across the U.S. – filling an important need for the families we serve. Read more about TACA's programs
• And finally, almost 4,000 calls and countless emails were answered in 2009. Many families tell us that TACA was the only autism organization to answer their call or questions.

As we close 2009, TACA now serves well over 15,000 families affected by autism. Our membership, consisting of families, friends and corporations, now nears 19,000. It is a daunting number that sadly keeps rising. On average we add over 350 families a month.  We continue to serve the needs and answer the calls for help and hope.

It’s only once a year that I get to thank Team TACA for giving countless hours and working well beyond their job description. A special thank you to:  Susan, Holly, Violette, Stephanie, Diana, Sharon, Maryam, Mari, Moira, Becky, Lynne, Melanie, Elizabeth, Roxanne, Julie and our hundreds of volunteers- Genny, Kimberly, Courtney, Diane, Christina and others. Thank you to the TACA Board who serves and fundraises to help make it happen: Glen, Pat & Casper. I send a special shout-out of huge gratitude to our 65 Volunteer Chapter Coordinators and the almost 200 mentor families who serve so passionately and tirelessly. You complete us and without you there is no TACA. This group of families is dedicated beyond words and helps us to reach families with our mission and programs.

Due to the economy, TACA has learned to do MORE with LESS.  We have been scrutinizing all expenditures and have found ways to acquire help for our members without writing checks. Most of 2009 has been a huge challenge for me and our staff. We are grateful to our financial donors and the in- kind donors have been huge to TACA. In-kind donations helped TACA with close to $400,000 in products and services.

Almost 2,000 businesses and individuals made donations to help TACA carry out our mission. Some of our donors include: Jack FM, Oakland A’s, Oxyhealth, Kirkman Group, DW Reynolds Foundation, OC Community Foundation, Oakley, Sheckler Foundation, Yoga Silverlake (who held a weekly yoga class for TACA’s mission raising over $11,000!), Redbull, Buchanan Street Children’s Charities, Ingram Micro, Volcom, HB Police Officers Foundation, Inhouse IT, Rock Harbor Church, Peet’s Coffee, Midwest Insurance, The Dodgers Foundation, NexGen Digital, Park Pharmacy, Porsche North Scottsdale, Easton Sports and of course our long relationship with Pacific Life Foundation.  There are many others and we appreciate you believing in and supporting TACA, our mission and the families we serve. I especially appreciate the almost 200 families that helped to raise over $100,000 for TACA in our annual Family & Friends Campaign.

These generous donations allow TACA to continue to serve the families affected by autism at no cost to them. We are honored to help these families through their day-to-day struggles and efforts as they raise a child affected by autism.

The Centers for Disease Control and U.S. Federal government have recognized autism is on the rise. Sadly across the US we have seen more than a 400% increase in autism diagnoses in the past decade and the rate continues to climb annually. TACA is feeling that pain and these families continue to turn to us for help.  We are needed now, more than ever.

We push forward relying on financial donations from our corporate sponsors, local businesses, and friends. At TACA, we truly do not wish to burden the families we are serving, but like our families, we struggle to meet the overwhelming need.  Every little bit helps. Every donation to TACA touches a life.

I know each child with autism has the chance and ability to improve. We all want recovery for our kids. We have received thousands of emails at TACA that have included improvement updates of children and I have included some of those below: 

• My son is now sleeping through the night for the first time in 7 years – thanks to what I learned from TACA.
• My child is potty training, after years of trying, thanks to TACA’s help.
• After years of teaching, my son learned to tie his shoes.
• For the first time, my daughter recited a speech in front of a class.
• This year, my once severe child, now a teen, got his driver’s license and secured a paying job.
• My child sang in the holiday pageant with peers for the first time after four holiday tries.
• My son told me “thank you for the tummy boo-boo help. The boo-boo has gone away.” (This mom started the diet weeks before with her non-verbal child.)
• My son hugged instead of hitting his sister this year.
• My son told me “I love you” after nine years of being non-verbal.

The need is overwhelming. There are not enough hours in the day to answer all the questions and to help all the families.  We appreciate any help families can gather from their circle of friends. Those networks help form the backbone of what is TACA. To our members, tell a friend about TACA and express a simple need for their support so we can continue our mission into 2010. To our current TACA friends and corporate supporters we would like to ask that you continue your support and if possible to give more to accommodate the constant growth.  Your gift of support and in turn your help of families affected by autism will make a big difference in the lives of their children. Thank you for being a friend to TACA.

And to my TACA families & friends – so much is in store for our children in 2010.  So many of our children continue to improve. The hope I have for my child and all our children remain – they have a bright future. Together, we will work towards that future and create positive outcomes for all our kids.  Happy new year!

All my best for 2010 & beyond,
Lisa Ackerman – TACA Executive Director
Mom to Jeff & Lauren, wife to Glen

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