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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

April 2010 #1

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.

  

3. Listen, Learn & Take Action for Your Child at the Real Help Now Conference

ORANGE COUNTY, CA
May 1, 2010

Featuring:
Martha Herbert, MD
Tim Buie, MD
Anju Usman, MD
Jerry Kartzinel, MD
 

Register Online Now - Online Registration Closes on April 29!

Searching for and finding the right information to help your child can be overwhelming for families affected by autism. The Real Help Now Conference was developed to bring the latest information on medical, dietary and legal issues for children with autism, and most importantly, help parents through the often daunting process of determining how to organize and prioritize their intervention efforts.

The Real Help Now Conference will provide two important tools for translating the information gained from the speakers into action for your child:

1. Real Help Now Workbook with step-by-step processes to help you to determine appropriate interventions and timelines for taking action in the realms of medical and dietary intervention, education, finances and home life. (Sorry, this Workbook is only available at the conference.)

2. TACA parent mentors who have been there, done that. Our experienced mentors will be on hand to to work with you one-on-one to answer your questions and share what has worked for their child.

Whether you are just starting out on the autism journey or are an experienced parent, you will learn from nationally known experts about how you can help your child at the Real Help Now Conference.

Complete conference information

4. 7th Annual TACA Family Picnic

TACA is very excited to announce our favorite family event – the 7th Annual Family Picnic!

This extremely popular family event will be attended by more than 2,000 families who have children with autism. This event has sold out every year!

This event will provide a safe and fun picnic for children affected by autism and is a primary fundraiser to help TACA continue to provide important services to families affected by autism at no cost.

For more information please click on the following information links:

• What is the TACA Family Picnic? Watch this short, heart warming video
• Picnic Info
• Sponsor Benefits
• Auction Donation Form
• Buy Tickets
• VIP Packages
• Volunteer help needed

5. TACA's Becky Estepp on Classic and Regressive Autism

Ageofautism.com

By Rebecca Estepp

In June of 2008, I had the pleasure of going to lunch with an amazing autism advocate, Karen Driscoll. Although I am sure Karen doesn’t know it, this lunch would forever change the way I viewed autism.

Karen and I had been working on passing federal legislation to get Applied Behavioral Analysis (ABA) therapy covered for military families under Tricare, the United States military’s health insurance plan. Like many of my relationships in autism advocacy, I knew Karen virtually that is only through email, phone, and text messages. Meeting her face-to-face was a pleasure. And it was under the best circumstances for advocates like Karen and I, we were lobbying together on Capitol Hill.

I had been to Capitol Hill many times prior to advocate for a safer vaccine program. I had always thought I did a fairly good job on getting my points across at these meetings. The staffers never glazed over in boredom and my appointments typically lasted well over an hour even though I had been warned that I had fifteen minutes to deliver my message. So I considered my lobbying to be at least somewhat successful.

However on this day, I was with Karen and she is a professional. I recognized it immediately when we walked in the first Congressman’s office and sat down. Karen pulled out a beautiful wire bound booklet from her brief case. This booklet contained her presentation on why ABA therapy should be covered by Tricare. It incorporated every point she wanted to make. Karen’s booklet even had tabs that included: stories and photos from families that had been denied ABA, handouts on why ABA is effective, and ABA endorsements from every branch of the military. Her delivery was eloquent and polished. I was very impressed.

After our morning meetings we decided that Mexican food was in order. Karen and I went to a restaurant adjacent to the Hill and sat down to eat. It was at this time that Karen and I got to know each other better. We quickly realized that we had a lot in common. Not only are our husbands both Marines but they flew the same aircraft and were stationed at the same base in the 1990s. Karen and I are both from Southern California and our first sons (the sons with autism) were born the same year. I asked Karen a question I always ask my autism advocate friends, “At what age did your son regress and which vaccine do you think harmed him?” Karen caught me off guard when she answered, “My son showed delays from the beginning and I am not sure if a vaccine harmed him.” This is when I heard that scratching record needle sound in my brain. I thought to myself, “What? You mean my amazing new autism friend might not be a fellow ‘bio-medical treatments help and vaccines harmed my child compatriot’?” How could this be? I knew Karen to be intelligent, poised, rational and full of integrity.

I rode home on the train that afternoon with Karen’s words echoing through my head, “My son showed delays from the beginning.” Those words shook the beliefs I had about the causation of autism. Until that day, I really believed that parents who thought their children were different from birth did not want to consider that autism was environmental and therefore did not have to happen. I believed these parents to be burying their heads in the sand instead of looking at a horrible truth that I had accepted years and years ago. But I knew Karen was brave; she wouldn’t have buried her head in the sand. So I started thinking about the things I knew to be true regarding my son Eric’s experience with autism. I made a short mental list of these things.

1. Eric experienced a vaccine reaction, after that reaction he was constantly ill and subsequently became developmentally delayed.
2. Eric was diagnosed with autism at age two.
3. Defeat Autism Now (DAN) doctors provided Eric with biomedical treatment and were able to move him out of a state of constant illness and (I think) pain back to a happier and healthier child.

Obviously, Karen had a different experience. How could that be? Karen and I had so many similarities, how could our sons with the same disability have such a different experience in the development of their autistic symptoms?

Then it hit me. We were both telling the truth.

That sounds like a simple aspect to grasp, but it was very profound for me. At this point, I had been in the autism world for eight years. Early on I had staked my autism causation claim with the parents who believed vaccines or other environmental factors contributed to their child’s condition. I never looked back after that and I did not spend time with the parents who thought otherwise. But now I had a good friend who was most likely on “the other side.” Wow, that was a heavy thought to process.

The division between the genetics/non-regression parents and the environmental/regression parents runs deep. We are the Hatfields and the McCoys of the disability community. Both sides bicker, name call, and sling mud all in the name of helping our children. I have rarely seen an angrier community.

And then it made sense. This community is so angry because each side is telling the truth. The truth as it applied to their own unique situation. What an epiphany!

The years of animosity became clear to me. Each side had been accusing the other of the same offense, being delusional. Both sides saw their child develop autism one way and then assumed that is how it must have happened for all the others. I’ll admit it. I made the same assumption.

Both sides are angry at each other because they think they were not being believed. I know how it makes me feel when a doctor, parent or some other professional tells me that Eric never exhibited typical development and that I was obviously mistaken about his period of normalcy. It makes me want to scream, “Eric was perfect. He was developing on track and then slowly descended into autism. Why are you not listening to me?” Let’s assume for a second that Eric was delayed since birth. If I were told by someone else that he wasn’t really delayed that early and that he had a regression that I chose to ignore that would make me plenty cranky also. What if this is what both sides are doing to each other? I have a sneaking suspicion that is exactly what we are doing.

This epiphany made me start thinking of different health conditions. I immediately thought about diabetes. I wondered if diabetes has two types, couldn’t autism be similar? I looked up diabetes and found out that type 1 diabetes usually develops when a person is younger and type 2 diabetes manifests later. I also learned that type 2 diabetes occurs when a person has certain risk factors that they can not change (family history of diabetes, ethnicity, age, etc…) and then external factors are introduced (obesity, poor diet, limited exercise, smoking, etc…) Hmmm…..genetic risks plus outside or acquired factors…. where have I heard of that equation before? The type 2 model of diabetes sounds like what happened to Eric (genetic susceptibility plus an acquired trigger) while the type 1 model sounds a little more like Karen’s son (something that was apparent early on.) Another interesting fact is that type 2 diabetes accounts for ninety-five percent of all cases of diabetes.

Then I thought about blindness. Some individuals are born blind because of genetic factors. Others develop blindness from an illness or an accident. Again, we have a condition that occurs early on in development versus a condition that transpired because of external factors.

I know that my diabetes and blindness comparison to autism involves absolutely no scientific basis at all. I am merely using theses comparisons as analogies. Everything I have written so far is anecdotal. I am not a scientist, I am just a mom with a crazy dream of a little bit of unity and a lot more progress in this torn community.

What if the autism community started thinking of autism in two separate categories? “Classic Autism” could describe the individuals that had symptoms evident at birth or shortly afterwards and “Regressive Autism” could describe those that developed typically for a period of time and then changed. I think this could pave the way to better understanding and consideration from both the Hatfields and the McCoys in our community. Both sides could let their defenses down and start opening their minds to the idea that there is more than one path that leads to Autismland.

And what if doctors and researchers entertained this dual autism category hypothesis? Potentially, this could be phenomenal. Think about it. The research that goes into “Classic Autism” could still occur and we’d have a virgin research territory to explore what is causing “Regressive Autism.” I could envision tensions easing in the research world. The doctors who have staked their reputations on a genetic model of causation could point to the individuals in the “Classic Autism” category while the scientists who have been researching environmental factors would have the “Regressive Autism” category to hitch their wagon to.

Personally, I would want to see a lot of research funds going into “Regressive Autism” because that would be the newest frontier and “Classic Autism” has had many years in the research funding limelight. Furthermore, before my allies think I have gone soft, and please know that I haven’t. I think “Regressive Autism” accounts for the overwhelming majority of cases of autism, much like type 2 diabetes accounts for most of the cases of diabetes. I feel that the children under the “Regressive Autism” model have received the short end of the research dollar stick for far too long. That needs to change.

As I said before, I am not a scientist. The last time I was in a college level science class George Bush Sr. was in office, so clearly it’s been awhile. I haven’t applied the scientific method to my hypothesis. I can not say with certainty that I am right. But there is something deep down inside of me that is telling me that my epiphany has a lot in it. I can feel it.

I am so grateful for that lunch with Karen on that summer day. She really opened my eyes to the way I perceive autism. Because of Karen, the next time I have lunch with new autism parent, I am going to revise my question from “At what age did your child regress and which vaccine do you think harmed your child” to “Does your child have ‘Classic Autism’ or ‘Regressive Autism’?”

I hope you all do the same.

6. Jack Open Golf Tournament

Jack FM & Talk about Curing Autism (TACA) are teaming up for the 2nd Annual Jack Open Golf Tournament & Party to raise money for families affected by autism.

The Jack Open will feature special guests, a golf tournament with prizes, silent & live auctions, and an awards dinner and after party.

	Date:	Monday, May 3, 2010
	Schedule:	9:00 a.m. Registration Open 11:30 a.m. Shot Gun Start 5:30 p.m. Dinner, Drinks & After Party
	Location:	Los Coyotes Country Club Buena Park

For sponsorship, registration and additional information please see www.jackopen.com or call the TACA office at (949) 640-4401 and speak with Violette Prentice

7. Daily Autism Updates for Families

All news related to autism: AgeofAutism.com

8. Statement from Dr. Andrew Wakefield Regarding GMC Hearing Sanctions

AgeofAutism.com

By Dr. Andrew Wakefield (See .pdf here)

On Wednesday April 7th, General Medical Council (GMC) lawyers will demand that I and likely two other doctors involved in the MMR-autism case should be erased from the UK’s medical register, removing our license to practice medicine. Doctors’ regulators have found the three of us - Professor John Walker-Smith, Professor Simon Murch and me - guilty of undertaking research on children with autism without approval from an ethics committee.
We can prove, with extensive documentary evidence, that this conclusion is false.

Let me make it absolutely clear that, at its heart, the GMC hearing has been about the protection of MMR vaccination policy. The case has been driven by an agenda to crush dissent that in my opinion serves the government and the pharmaceutical industry — not the welfare of children. It’s important to note that there has never been a complaint against any of the doctors by any parent involved in this case — only universal parental support and gratitude.

My colleagues, Professors Walker-Smith and Murch, are outstanding pediatricians and pediatric gastroenterologists. They have led the field of pediatric gastroenterology for decades, devoting their lives to caring for sick children. Our only “crime” in this matter has been to listen to the concerns of parents, act according to the demands of our professional training, and provide appropriate care to this neglected population of children. It is unthinkable that at the end of an unimpeachable career, Professor Walker-Smith would even consider unethical experimentation on children under his care.

In the course of our work, we discovered and treated a new intestinal disease syndrome in children with autism, alleviating suffering in affected children around the world. This should be cause for celebration. Instead, we have been vilified in the press, and demonized by a wasteful PR campaign by the Department of Health. The aim of this negative publicity was to discredit my criticism of vaccine safety research.

Sadly, my colleagues have suffered severe collateral damage in this effort to prevent valid scientific enquiry. They should be exonerated, and left alone with their reputations intact, in the certain knowledge that they have done only what is right.

The loss of my own medical license is, unfortunately, the cost of doing business. Although I do not take this loss lightly, the suffering - so much of it unnecessary - that I have seen among those affected by this devastating disease makes the professional consequences for me a small price to pay by comparison.

As long as a question mark remains over vaccine safety; as long as a safety-first vaccine policy is subordinate to profit and self-interest; as long as the benefits of vaccines are threatened by those who have compromised public confidence by denial of vaccine damage, and as long as these children need help; I will continue my work.

Dr Andrew Wakefield is an academic gastroenterologist, committed to understanding more about the role of intestinal inflammation and dysfunction in childhood developmental disorders. He is involved in a new initiative, focused specifically on issues of autism causation. His book Callous Disregard comes out in May 2010.

9. Supreme Court May Hold Key for Vaccine Foes

Tony Mauro, The National Law Journal
April 05, 2010

In spite of recent courtroom losses, parents who blame their children's autism at least in part on childhood vaccines say their legal battle is far from over.

"We've always been in it to the very end," said Theresa Cedillo of Yuma, Ariz., whose autistic daughter Michelle became the focus of a key test case at the U.S. Court of Federal Claims in 2007. Even though the special master in the case ruled against her, Cedillo said, "I am optimistic. We have met our burden."

One reason for her optimism is that the U.S. Supreme Court has agreed to hear next fall the case of Bruesewitz v. Wyeth, a non-autism case that asks the justices to decide whether the federal vaccine law pre-empts state law tort claims of vaccine design defects.

David Frederick, a partner at Kellogg, Huber, Hansen, Todd, Evans & Figel who trounced Wyeth in a drug pre-emption case last year, will argue against Wyeth again in the Bruesewitz case. He'll face off against former Stanford Law School dean Kathleen Sullivan, now name partner and head of the appellate practice at Quinn Emanuel Urquhart & Sullivan.

If Wyeth wins, then more than 5,000 families making autism-related vaccine claims may not be allowed to sue vaccine makers in tort actions after they are adjudicated under the so-called "vaccine court" system Congress devised in 1986.

In part to keep vaccine manufacturers from leaving the field, Congress established a special system for compensating vaccine injuries. The cases are handled by the claims court in an expedited, no-fault process. Claims are made against the government, not vaccine makers. To a limited degree, the law left the door open to taking cases to court after losing in the claims system, and the high court will decide when that can happen.

If Wyeth loses, then parents may find a more sympathetic state-court forum for their claims than the one Congress created. "The system hasn't worked the way it was supposed to work at all," said New York University School of Law professor Mary Holland, who has written legal briefs on the side of parents in autism cases. "Through the Bruesewitz case, the Supreme Court will find out the program is a disaster."

Cedillo agreed. "It wasn't supposed to be adversarial; it was supposed to be quick and family-friendly," she said. "It has been none of those things. The Supreme Court case could give us another option."

Cedillo's daughter was born healthy in 1994 but, a week after receiving the standard measles-mumps-rubella vaccine in 1995, she ran high fevers and her development slowed. In 1997, she was diagnosed with autism. Now 15, Michelle requires constant monitoring because of frequent and life-threatening seizures, according to her mother -- and her case is still pending. "It's really sad."

The Cedillo family volunteered to be the first "test case" of one of the theories of causation linking the vaccine to autism. After a three-week hearing and the testimony of 17 witnesses against her, a special master last year dismissed the claims, asserting the evidence was "overwhelmingly contrary" to the claim that vaccines containing mercury caused Michelle's disabilities.

Last month, Ronald Homer of Conway, Homer & Chin-Caplan in Boston challenged the ruling in the U.S. Court of Appeals for the Federal Circuit. He claimed the system is biased because the government fears that linking autism to vaccines will scare parents away from having their kids vaccinated. "She was denied compensation because she was a messenger," Homer wrote.

A second test case in which a family lost, Hazlehurst v. HHS, is also on appeal at the Federal Circuit.

For its part, the government claims that Cedillo had six expert witnesses of her own. In a brief filed in the Cedillo case, Justice Department lawyer Lynn Ricciardella said the special master's decision "reflects a careful and well-reasoned analysis."

10. The Mother of Three Autistic Children Shares Her Story

By Justine van der Leun, AOL Health

Connecticut-based stay-at-home mom and autism advocate Kim Stagliano chronicles her trying and illuminating daily experiences raising her three daughters with autism on her eponymous blog. In her other venues -- she's the managing editor of the Web site Age of Autism and blogs at The Huffington Post -- Stagliano argues alternately for research for a cure, government funding for children with autism and their families, alternative therapies and biomedical interventions. She is also the author of a forthcoming memoir. AOL Health asked Stagliano for her take on the joys and challenges of being a parent to children with autism and what she says to her critics.

AOL Health: You have three daughters, all of whom fall on the autism spectrum. What do you believe caused or contributed to their autism?

KS: The million-dollar question. I think we have a genetic predisposition to environmental insults, which could include vaccines, toxins, my husband and my heavy metal load, the quality of my breast milk and unknowns.

AOL Health: Over the past 15 years, what treatments have you tried with your girls, and how have they responded to them?

KS: The GFCF [Gluten Free Casein Free] diet has been our best treatment. The diet has helped with stomach problems, which, in turn, has greatly cut down behavior issues. It also helps the girls sleep through the night. Imagine taking a test on a day when you have terrible cramps or a headache. How well would you do? We've also used a number of biomedical treatments -- supplements, vitamins, other natural products -- that have helped the girls function and feel better.

AOL Health: On your blog, you contend that autism is curable and that your role as the mother to children with autism is to "get rid of it." Can you explain your perspective?

KS: Every mom wants to make her child's path easier to travel -- whether it's tutoring to get better grades for college admission or weight-loss camp to address health issues or trying to ameliorate the undesirable behaviors and pain associated with autism. Autism affects every aspect of my children's lives. I'd be remiss if I didn't try to help them.

AOL Health: How do you respond to parents and adults with autism who believe that individuals should be celebrated for their different "way of being" and not cured?

KS: I respect every parent's desire for his or her own child. But I don't confuse my children's wonderful personalities -- loving, kind, funny -- with the very real deficits they face from their autism. Not being able to speak and make your needs known is not the same as having a quirky personality. And traits that are endearing in a 6-year-old may not be so at 21. I try to look at what my girls will need as adults and after their Dad and I are gone. They need to be able to function as well as possible for their health, safety and well-being.

AOL Health: Studies show that 10 percent of kids can recover with intensive behavioral therapy, while no studies have shown that biomedical treatments like chelation have any effect on kids with autism. Knowing that, do you support putting a child through potentially dangerous and sometimes painful treatments -- and if so, why?

KS: I find the assumption that biomedical treatments are potentially dangerous and painful misleading. Risperdal, the approved drug for autism, has atrocious side effects, but no one seems to mention that. Some behavioral centers use aversive therapy, including shock treatment, on children and young adults with autism. I find that abhorrent. The majority of the biomedical treatments are based on healthy, pure food; vitamins and supplements. Where there are prescriptions involved, that's under the care of a doctor. No one questions parents who allow their children to undergo chemotherapy with known side effects, and yet in autism, we are expected to let our children languish and remain in pain. It makes no sense to me.

AOL Health: As someone outspoken and opinionated, you've received criticism in autism circles. What do you say to your critics?

KS: Come live in my household for a week.

AOL Health: Raising three children with autism is clearly challenging. Do you get any help? How do you cope?

KS: There is very little help available. My husband is fantastic with the kids, and that's a big plus. I cope because I adore my girls and I love being their mom. And I am actively involved in improving their lives and the lives of others with autism. When you take control of a situation, it empowers you to feel confident and hopeful. Plus, to know that I am helping other families gives me a huge boost. Some days are easier than others; I'll admit that.

11. Statement By Secretary Sebelius On National Autism Awareness Month

During National Autism Awareness Month, we reflect on an urgent public health challenge and rededicate ourselves to addressing the complex needs of people with autism and their families. Over the last decade, we've learned that autism is far more prevalent than we had previously believed, affecting one out of every 110 American children. While we still have a lot to learn about what causes autism and which treatments can help people with autism thrive, we're getting closer to finding answers thanks to a historic new investment in autism research. At the same time, we continue to improve lives by educating health care professionals about how to detect the disorder early, funding networks of providers and parents that spread information about the most promising autism treatments, and helping autistic children get the support they need in school. We took another step forward last month when President Obama signed a health reform bill that will make it illegal for insurance companies to deny health insurance to people because they have autism.

This month, we recognize the significant challenges that Americans with autism face and rededicate ourselves to these efforts to address them.

For more information on the Department's efforts regarding autism, please visit here.