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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

February 2010 #2

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. Walka for TACA

Saturday, April 17, 2010

Walka for TACA is a family-oriented fundraising event in combination with TACA's 6th Annual Family and Friends Campaign. We encourage members and the community to come to the event and for a family-filled fun morning. There will be activities for the children, TACA resource providers, event sponsors, light snacks and music.

Dedication and thanks go out to: Special thanks to the Cernius family for helping arrange this family fun event. This event is in honor of Andrew and the thousands of children like him affected by autism.

• More event information

• Sponsorship/Exhibitor information

• Walka for TACA flyer

• Register online

• Frequently asked questions

• Set up your customized online donations page

• To volunteer to help – please contact Violette Prentice

4. Daily Autism Updates for Families

All news related to autism: AgeofAutism.com

5. Autism's earliest symptoms not evident in children under 6 months

Condition is characterized by a slow decline rather than an abrupt loss of skills, study says

(SACRAMENTO, Calif.) — A study of the development of autism in infants, comparing the behavior of the siblings of children diagnosed with autism to that of babies developing normally, has found that the nascent symptoms of the condition — a lack of shared eye contact, smiling and communicative babbling — are not present at 6 months, but emerge gradually and only become apparent during the latter part of the first year of life.

Researchers conducted the study over five years by painstakingly counting each instance of smiling, babbling and eye contact during examinations until the children were 3. They found that by 12 months the two groups' development had diverged significantly. Intentional social and communicative behavior among children developing normally increased while among infants later diagnosed with autism it decreased dramatically. The study is published online early and will appear in the March issue of the Journal of the American Academy of Child & Adolescent Psychiatry.

"This study provides an answer to when the first behavioral signs of autism become evident," said Sally Ozonoff, the study's lead author, a professor of psychiatry and behavioral sciences and a researcher with the UC Davis MIND Institute. "Contrary to what we used to think, the behavioral signs of autism appear later in the first year of life for most children with autism. Most babies are born looking relatively normal in terms of their social abilities but then, through a process of gradual decline in social responsiveness, the symptoms of autism begin to emerge between 6 and 12 months of age."

Autism is a pervasive developmental disorder of deficits in social skills and communication, as well as in repetitive and restricted behaviors, with onset occurring prior to age 3. Abnormal brain development, probably beginning prenatally, is known to be fundamental to the behaviors that characterize autism. Current estimates place the condition's incidence at between 1 in 100 and 1 in 110 children in the United States.

Children with a sibling already diagnosed with autism are known to be among those at greatest risk of developing the disorder. The current study included 25 high-risk children who met criteria for autism at 3 years of age, matched with 25 low risk peers who were developing normally. It was conducted at the MIND Institute and the University of California, Los Angeles. The sole inclusion criterion for the high-risk group was having a sibling with autism; low-risk participants had to have been born after 36 weeks gestation and have no autistic family members.

The children's development was evaluated at 6, 12, 18, 24 and 36 months of age using a series of widely implemented diagnostic tools, including the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R). Examiners were not told which babies were at high- or low-risk when evaluating the participants' development.

The researchers found that there were few discernable differences between the two groups at the outset but that after six months, 86 percent of the infants who developed autism showed declines in social communication that were outside the range for typical development. "After six months," the study found, "the autism spectrum disorder group showed a rapid decline in eye contact, social smiling, and examiner-rated social responsiveness." Group differences were significant by 12 months in eye contact and social smiling and all other measures by 18 months, the study found.

The study is notable because of the accuracy and precision of its prospective methodology, assiduously recording exact numbers of social and communicative behaviors during lab visits. Previously, researchers have constructed evidence of autism's earliest manifestations by interviewing parents about when they believed their children's symptoms first arose or by reviewing home movies for clues to when children begin exhibiting symptoms of autism.

"Until now, research has relied on asking parents when their child reached developmental milestones. But that can be really difficult to recall, and there is a phenomenon called the "telescoping effect" where people usually say that they remember something happening more recently than when it occurred," Ozonoff said. In addition parents frequently will turn off the video camera when their children are behaving poorly — precisely when autistic symptoms may appear.

Ozonoff said that the study provides a deeper understanding for parents, caregivers and health-care providers and for future research of the developmental trajectory for very young children with autism.

"We need to be careful about how we screen, and we need to know what we're looking for," Ozonoff said. "This study tells us that screening for autism early in the first year of life probably is not going to be successful because there isn't going to be anything to notice. It also tells us that we should be focusing on social behaviors in our screening, since that is what declines early in life."

"This study also found that the loss of skills continues into the second and third year of life," she said. "So it may not be adequate, as the American Academy of Pediatrics currently suggests, that providers screen for autism twice before the end of the second year. Autism has a slow, gradual onset of symptoms, rather than a very abrupt loss of skills."

"Screening may need to continue into the third year of life, since symptom emergence takes place over a long time. If a child starts exhibiting a declining trajectory and a sustained reduction in social communication we want to refer them into therapy, especially if they are at risk," Ozonoff said, "even before we might be able to make a definitive diagnosis."

Ozonoff said that the study does not address the etiology of autism or causality. In this study, the infants who participated were at high risk due to having strong family histories of autism, suggesting that genetics play a major role in the later autism diagnoses, despite the fact that their symptoms were not apparent at birth.

###

Other study authors include Ana-Maria Iosif, Fam Baguio, Ian C. Cook, Monique Moore Hill, Mary Beth Steinfeld, Sally J. Rogers, Sarabjit Sangha and Gregory S. Young of UC Davis and Ted Hutman, Agata Rozga and Marian Sigman of the University of California, Los Angeles.

The study was funded by grants from the National Institute of Mental Health of the National Institutes of Health.

The UC Davis M.I.N.D. Institute, in Sacramento, Calif., was founded in 1998 as a unique interdisciplinary research center where parents, community leaders, researchers, clinicians and volunteers collaborate to study and treat autism and other neurodevelopmental disorders. More information about the institute is available at www.ucdmc.ucdavis.edu/mindinstitute.

6. USA Today: Believe objective science and parents, not the medical industry or the media frenzy

By Mark Blaxill

In George Orwell’s dystopian novel 1984, a memorable scene follows the protagonist (working at the satirically named Ministry of Truth) as he rewrites the news to erase a man’s life and work from history. That’s what Richard Horton, editor of the British medical journal The Lancet, just attempted when he retracted a case series report by Dr. Andrew Wakefield and his colleagues at the Royal Free Hospital from the scientific record. Horton should be ashamed of himself, and anyone who believes in the free and open discussion of controversial scientific questions should be concerned about what has happened to our civil discourse in the process.

There’s a lot of name-calling and misinformation swirling around this issue that should stop. Parents concerned about vaccine safety issues are branded “anti-vaccine.” Dedicated scientists who simply reported a series of cases combining bowel symptoms, autistic regression and exposure to the MMR vaccine (measles, mumps and rubella) stand accused of fraud and misconduct. Meanwhile, the medical industry has dismissed concerns over exploding autism rates in a crusade to protect their policies and vaccine profits.

Anyone convinced that Wakefield is the problem should ask a simple question: Can you name a single instance of fraud or misconduct by Wakefield, describe it simply without deferring to the authority of some faceless tribunal and defend the evidence to an informed skeptic? You won’t succeed. Why? Because the evidence clearly shows there was neither fraud nor misconduct. The parents whose children Wakefield studied never complained, and most have gone public with their support of Wakefield and his colleagues. Why wouldn’t they? Their children were treated by Wakefield’s colleagues, experts in pediatric gastroenterology, and the children’s intestinal symptoms and symptoms of autism improved.

The Lancet parents are not alone. Thousands of parents all over the world — dedicated, educated parents of children with autism — have done their own scientific diligence and reached conclusions that differ from the media frenzy stoked up by government officials and the medical industry. They trust Wakefield and believe he and his colleagues stand unjustly accused. They also believe that scientific censorship is a pernicious thing and should stop. You should, too.

Mark Blaxill is Editor-at-Large for Age of Autism and a Director of SafeMinds, an organization that researches the role of mercury in autism.

7. Parents explore diet and autism

By KIM MORGAN FOR THE CHRONICLE

“Very nasty, very foul odor and full of undigested food particles,” said Houston resident Michelle Groogan of her then 18-month-old son's bowel movement. “It was the classic autism poop.”

Garrett was diagnosed with autism when he was 2, and Michelle Groogan began researching ways to ease her son's digestive issues, which she felt were autism-related. It wasn't long before she came across the Gluten Free Casein Free, or GFCF, diet.

Gluten is a protein found in wheat, rye, barley and oats. Casein is the protein in cow's milk, as well as all mammalian milk.

“It was very overwhelming,” Groogan said. “I mean, everything has gluten and dairy in it.”

Groogan said health food stores and grocery stores such as Whole Foods make it easier to find GFCF foods, but it comes with sticker shock. She spends about $75 a week on Garrett's food, the same amount she spends for food for the rest of the family.

“We had nothing to lose by trying it,” Groogan said. “Within a few months we started seeing normal stools. When his digestive system was feeling better, we noticed he picked up more language.”

Garrett, now 6, has been on the diet for more than three years.

“It certainly hasn't healed him completely,” Groogan said, “But we're not ready to stop the diet any time soon.”

Katherine Loveland, professor of psychiatry and behavioral sciences and director of the Center for Human Development Research at The University of Texas Medical School at Houston, said the American Academy of Pediatrics released a statement recently that said it's possible that kids with autism have some problems that are related to gastric disturbances, but they do not see evidence that this is a cause of autism.

“That does not mean it might not be important,” Loveland said. “The percentage of kids with autism that has gastrointestinal difficulties can be 10 percent or 70 percent depending whom you study and how you study them. So it's not clear how many of them have it, or how many are relieved of it through diet.”

Anecdotally, for some, the proof is in the pudding.

“The observer is biased,” Loveland said. “That's one possibility. Or it could be that the child did have some gastric distress, pain they were not able to report, and the child is now more comfortable day to day, and therefore feeling better, so behaving better. To put it simply, it's complicated.”

Sugar Land resident Scott Jackson said he heard about the diet after his son Tyler was diagnosed with autism when he was 2.

“It seemed to be the first question people asked when they found out about Tyler's diagnosis,” Jackson said. “We decided to give it a try because just like every family desperately looking for ways to help their child, we will try most things that can help, with or without proof.”

Tyler, now 5, spent about 10 weeks on the diet without any noticeable improvement, Jackson said.

Dr. Robert Sears, who will release The Autism Book in April, said any parent starting their child on the diet should give it a good six months, but children age 7 and older need at least a year.

Food allergies, Sears said, are the single most common medical problem shared by children with autism.

He devotes an entire chapter of the book to diet changes, in which he writes about the GFCF diet. He said one survey of 1,800 autistic children revealed 65 percent showed improvement on the diet.

He said chronic diarrhea resolves, first words emerge, hyperactivity diminishes, and potty training becomes easier.

Sears said the diet works best in conjunction with supplements, including digestive enzymes, probiotics, cod liver oil, vitamins and minerals.

Sears relates the stories of five families from his own practice who have had some success with biomedical treatments, including dietary changes and the addition of vitamins and minerals.

The children Sears talks about include those with classic regressive autism, which means kids who are “completely normal” the first year or two, and then go backwards developmentally, sometimes suddenly and dramatically.

Sears drives homes the point by saying early intervention “can change a life.” He also says he has had cases of children who don't fit the classic story of regressive autism with gastrointestinal symptoms, but who still benefit from the GFCF diet.

One such patient didn't have constipation or diarrhea and didn't regress socially or developmentally, but was quite developmentally delayed. The child was diagnosed with autism, and Sears said he showed improvement after going on the GFCF diet, and adding vitamin B12 and zinc.

Sears wraps up his book with a chapter titled “Prevention for Your Future Children.”

“I know it's controversial to talk about prevention of autism when we don't actually know what the cause is,” Sears said. “Where I'm coming from is that a lot of similar medical problems seem to occur in kids with autism, and that when we fix those medical problems, the symptoms of the autism tend to get better. One of the main ones is food allergies. Identify food allergies early by taking colicky babies and chronic, loose stools seriously.”

PREVENTION TIPS
Autism prevention? Dr. Robert Sears believes it's possible.

For moms-to-be:
• Avoid vitamin D deficiency before, during and after pregnancy (if breast feeding).
• Avoid mercury. Moms-to-be should have metal fillings replaced at least three months prior to getting pregnant. Request mercury-free flu shots.

For infants:
• Limit antibiotics.
• Use ibuprofen (Motrin or Advil) instead of acetaminophen (Tylenol).
• Ask for a vaccine schedule which gives no more than two shots at a time.

For infants who have autistic older siblings:
• Go GFCF from the start, including mom while she is pregnant and breastfeeding.
• Delay vaccines until your child is 3 years old; regressive autism is almost unheard of.

GFCF DIET TIPS
• Go casein free first, because it usually involves only a few changes to the diet.
• Don't go cold turkey. Instead take a couple of weeks at a time to ease into changes of your child's diet.
• Determine how strict you need to be. Some kids can tolerate the occasional infraction.
• Don't go it alone. Find someone who can mentor you along.
Source: The Autism Book, by Dr. Robert Sears

RESOURCES
• www.tacklingautism.org
• www.theautismbook.com
• www.cdc.gov/ncbddd/autism

8. Autistic adults pose challenge

by Catherine Reagor, The Arizona Republic - Feb. 16, 2010

Several of Arizona's leading real-estate groups have tackled a growing national housing problem in a new report, Opening Doors: A Discussion of Residential Options for Adults Living With Autism and Related Disorders.

During the next 15 years, more than 500,000 children with autism disorders will become adults. Now, most adults with autism live with their aging parents, who won't outlive their children. Autistic adults currently have few options for housing away from their families.

"The potential crisis in housing and services for this population is an issue not only for families and local communities, but for society as a whole," said Joe Blackbourn, a Valley developer and former board member of Southwest Autism Research & Resource Center.

The housing needs for the growing population of autistic adults must become part of a community's growth plans, according to research from the Urban Land Institute Arizona, SARRC, Arizona State University's Stardust Center for Affordable Homes & the Family, and the ASU Herberger Institute School of Architecture.

The Opening Doors study, released last week, looks at potential models for affordable homes and financing options needed to build projects for autistic adults.

Backers of the research are already scouting properties in metropolitan Phoenix that can be renovated into those residential models. These projects will help the ailing housing market by filling and converting abandoned properties and funneling money, including federal funds, toward construction projects.

The research was funded through grants by Urban Land Foundation, Pivotal Foundation and SARRC.

The housing portion of the research introduces builders, architects, developers, planners, public officials and others involved in residential development to the conditions of adults with autism that demand a new approach to the design and development of homes, said Sherry Ahrentzen, associate director of research at the Stardust Center.

Kim Steele, associate professor of landscape architecture at ASU's Herberger Institute, said the 10 resident-based design goals from the research range from neighborhood amenities to technology needed in homes for autistic adults.

Check out the research at www.autism center.org/opening doors.aspx.

9.Chronic health conditions increasing in children, study finds

The rates are higher and the illnesses are different than in previous generations, researchers say, with youths suffering from attention deficit disorder, obesity and asthma.

By Shari Roan, Los Angeles Times
February 17, 2010

More than a quarter of all U.S. children have a chronic health condition, new research suggests, a significant increase from the rate seen in earlier decades and a statistic that looms large for the nation's efforts to subdue rising healthcare costs.

But the report doesn't suggest that children are less healthy. The comprehensive look at children from 1988 through 2006 also revealed that health conditions themselves have changed.

Fewer children today are affected by congenital defects, infectious diseases and accidents than they were 50 years ago; instead, cultural, lifestyle and environmental conditions appear to be the root cause of many pediatric illnesses.

"The study speaks to the fact that children need continuous access to healthcare," said Dr. Jeanne Van Cleave, a pediatrician at MassGeneral Hospital for Children in Boston and the lead investigator of the study. "But with good treatment, a lot of these conditions will go away."

The paper was released online Tuesday in the Journal of the American Medical Assn., ahead of print publication Wednesday.

Researchers analyzed the prevalence of illnesses by surveying the mothers of approximately 5,000 children. Data from three time periods were analyzed: 1988 to 1994, 1994 to 2000, and 2000 to 2006. In each time frame, the children, ages 2 through 8 at the start of each period, were followed for six years.

The rate of chronic conditions increased from 12.8% in 1994 to 26.6% in 2006. Latino and black youths and males were more likely to have health problems.

The findings mean that children today suffer from different illnesses than those seen in previous generations, said Dr. Neal Halfon, director of the UCLA Center for Healthier Children, Families and Communities. And many behavioral and mental health conditions, such as attention deficit disorder, weren't diagnosed decades ago.

"We have a whole different set of conditions we're looking at today and a broader set of definitions for illnesses," said Halfon, who wrote an editorial accompanying the study. "We're seeing bigger increases in obesity, attention deficit disorder and other mental and behavioral conditions. Part of that has to do with the kinds of environments in which children are growing up."

Obesity and related conditions accounted for a large percentage of child illnesses, although the study reflected previous research showing obesity rates are stabilizing among U.S. children.

But that is little comfort when a quarter of children have some type of chronic health problem, said William Gardner, a principal investigator of the Research Institute at Nationwide Children's Hospital in Columbus, Ohio, who was not involved in the study.

"Asthma, attention deficit disorder, obesity -- there aren't robotic surgeries to fix these things," he said. "It's a situation where we need to have a really strong primary care system where kids have what we call a medical home and they have regular contact with a primary care doctor or nurse practitioner."

Unlike adults, chronic health conditions in children appear more capricious, with symptoms waxing, waning or even disappearing. Only 7.4% of the children had a chronic health condition at both the start and end of the six-year observation period, Van Cleave said.

Addressing health problems early on is likely to yield large dividends financially for the nation, Halfon said.

"Not that the die is completely cast in childhood," he said, "but it is showing a certain kind of epidemiological trajectory that we should not be ignoring."

shari.roan@latimes.com

10. Arthur Krigsman Leaving Thoughtful House

11. Personal Note from Founder

Looking forward at 2010 is a daunting task. The number of TACA families joining and needing help continues to grow every month. 

As TACA enters our 10th year of services in helping families the one thing we do know – families need TACA. The programs created and in practice for years were created from first hand knowledge of what a family needs once autism enters their lives.

We greatly appreciate our families for moving their children one step closer to recovery (and/or) independence. We now know with thousands of families who have experienced recovery that the unicorn theory DOES exist. Children do improve. Children can recover from autism.

Even if recovery is not yet achieved the stories of tremendous improvement are celebrated and revered. Nothing is as wonderful as hearing these children progress and parents sharing the joy.  We receive updates and wonderful accomplishments by children from proud parents everyday.

What I have learned is that TACA families do not take anything for granted. We tend to celebrate each victory – no matter the size – because many of us were told there was nothing you can do. We have all learned that this statement is just not true.  At TACA, we get words about families with 5 year old, 15 years and yes even 25 year olds utilizing the best practices with great results. What we know for sure:  kids improve when the best practices are applied regardless of their age.  The window never closes for a chance of improvement.  At TACA we will be there for these families every step of the way.

GMC & the recent ruling:

In January, the GMC ruled on the “Wakefield controversy.” TACA supports Dr. Andrew Wakefield and his colleagues Professor John Walker-Smith and Professional Simon Murch in this time of need and great challenge. We are deeply saddened that science is not the key concern during this autism epidemic. Please see TACA’s full statement. And now – just one month later, Dr. Wakefield is moving on to a new position (article reference here). Our position remains: Children with autism who have unique medical issues, such as gastrointestinal distress, deserve proper assessments and treatments. We are grateful to know the research for answers will continue.

Oakley Eyewear line to benefit TACA:

TACA is extremely grateful for the support from our corporate partner Oakley. Oakley comes to TACA through the McIlvain family. Pat and Stephanie have been long time supporters to TACA and we are grateful for this product launch announcement to support TACA, our mission, and the families we serve.

The new eyewear product launch for TACA including the Oakley Fuel Cell and Ravishing products is a huge benefit to families affected by autism.  Please read more about this exciting announcement.  These new products can be purchased at Shop TACA, www.oakley.com or anywhere Oakley products are sold.

Oakley will be promoting this product line just in time for Autism Awareness month in April. Because of their amazing efforts you will begin to see this new eyewear line everywhere. We are extremely grateful for their support.

What I am the most excited about this announcement is all autism non-profit organizations can benefit from this effort as well. Oakley has worked with TACA to make  these products available to assist with fundraising for all autism non profits.  This community building effort is greatly appreciated and can help others with their mission and programs as well.

Thank you for believing in TACA, our mission and supporting our efforts.

With gratitude,

Lisa Ackerman

TACA Executive Director, mom to Jeff & Lauren, wife to Glen