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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.

TACA E-Newsletter

August 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. Autism Journey Seminars

Costa Mesa, CA
Saturday, September 25, 2010, 8:30 a.m.-4:30 p.m.

Greenwood, IN,
Saturday, October 16, 2010, 9 a.m.-5 p.m.

After receiving the diagnosis of autism for a beloved child (or children), parents typically struggle as they search through various resources to locate information needed to help their child the fastest. The goal of the one-day Autism Journey Seminar is to provide parents and caretakers the “jump start” they need at the beginning of their journey from parents who have “been there, done that.” In addition to sage advice, parents who attend will receive: an overview of beginning therapies and biomedical intervention, where to go for what information, and recommended first steps. The seminar will be given by experienced parents who volunteer their time in providing the education new parents need.

Who should attend?
Our one-day seminar is geared for parents and caretakers of children affected by autism. Content will be provided in an “overview” presentation with web and book resource information for additional details. This seminar is geared to parents and caretakers new to the autism journey (less than 18 months) who have not yet started a behavioral/educational program or biomedical testing and interventions.

Register Online

4. Daily Autism Updates for Families

All news related to autism: AgeofAutism.com

5. NAA Mourns the Passing of Dr. O. Ivar Lovaas

by Claire Bothwell

Dr. O. Ivar Lovaas
1927 – 2010

Children with autism and their families lost a great friend and champion on Monday, August 2nd, when Dr. O. Ivar Lovaas, founder of the Young Autism Project at UCLA and the Lovaas Institute for Early Intervention (LIFE), passed away. Dr. Lovaas was a pioneer and leading researcher in the use of “behavior modification” (now known as Applied Behavioral Analysis, or ABA), to treat children with autism and changed the way children with autism are taught.

Dr. Lovaas began working with individuals with autism in the 1960s when the general belief was that there was no hope for their future or opportunity for them to learn. Dr. Lovaas wouldn’t accept that they were hopeless and carried on when others gave up. Many families’ hopes for the treatment of their children centered around their discovery of Dr. Lovaas’s 1987 article, "Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children," published in the Journal of Consulting and Clinical Psychology. The article describes the outcomes of intensive behavioral interventions for a pre-school aged group of children with autism. In this article and subsequent writings, Lovaas has described three distinct groups as emerging following intensive early intervention: (1) a recoverable group of individuals who, following intervention, no longer demonstrate the characteristics of autism; (2) an intermediate group who make substantial progress but who still demonstrate characteristic autistic behaviors; and (3) a small group of individuals who benefit little from the intervention. Most families focused on "the 47% of subjects (nine out of nineteen)" in the 1987 study, who were described as having recovered from their autistic deficits, and established an intensive home-based therapy program which featured behavior modification therapy based on the principles set forth in Lovaas's 1981 book Teaching Developmentally Disabled Children: The Me Book.

Authorities in the autism field scoffed at Lovaas’s claim that autistic children could be helped by something as simple and straightforward as behavior modification, but he persevered and proved its effectiveness through his studies, and parents began fighting for this therapy for their children. Today, of course, behavior modification has been empirically validated as to its effectiveness within the scientific community. ABA is often the educational treatment of choice for autistic children, and many autistic children who receive early ABA improve dramatically.

The legacy he leaves behind is enormous – like ripples in a pond, it is impossible to calculate how many lives his dedication and hard work have changed. He has affected not just the families that he personally worked with, but the scores of students he taught who went on to carry out his work beyond his field, and all the families that they have worked with too.

Those of us who knew him personally will often use the same words to describe him: Passionate; Compassionate; Engaging; Joyful; and also Serious; Dedicated; Committed. He truly believed in the affected children and young adults he worked with, and he believed in their families. He offered hope when there was none. For many of us parents, he was the only branch we could reach for as the raging current of fear, despair, and desperation threatened to sweep us away. Those of us who sought his help for our children came to love and respect him as no other. He was our hero. He gave us the tools to reach our children and he gave us the power to reach others too.

Ivar, we will miss you. Thank you for your selfless contributions to our world. Our thoughts and prayers go out to Nina and Eric – we know they’ll keep your light burning bright.

6. Harvard Medical School rolls out new rules to stop its faculty from accepting bribes from Big Pharma

(NaturalNews) It is common practice for medical professionals to accept gifts, free travel, meals and other forms of indirect compensation from drug companies and medical device manufacturers for giving speeches that endorse their products. But Harvard Medical School has now made a new rule that prohibits its 11,000 faculty members from engaging in this activity.

The school is also requiring that faculty who consult with drug companies, join their boards and work with them in any other ways, report all income over $5,000 publicly. The school is promising to keep a better watch on the relationships that its faculty has with drug and medical device companies as well.

"We're anxious to be viewed publicly as doing what's in the best interest of our patients," explained Dr. Robert Mayer, co-chairman of the committee responsible for Harvard's new policy.

According to both Dr. Mayer and Dr. Jeffrey Flier, dean of Harvard's Medical School, faculty will still be allowed to work with such companies to perform industry-funded research, as well as be paid to sit on scientific advisory boards.

The new rules were spurred by Senator Charles Grassley's (R-IA) recent investigation concerning Harvard physicians who allegedly broke federal and medical school conflict-of-interest rules. Harvard has responded by proposing the new rules which are designed to improve its image in the view of the public.

A recent Boston Globe article about the new policy explains that Dr. Mayer's intent with the new rules is that they "are designed to keep doctors from becoming -- or being perceived as -- marketing agents for industry." So it is difficult to ascertain whether anything will actually change, or whether it will simply be perceived as changing.

7. School District That Takes the Isolation Out of Autism


‘After third grade there, I told my husband, Garner would go nowhere in life and the family would fall apart. We had to leave.’ Beth Moss, on why the family moved from Tennessee to Madison.
MADISON, Wis. — Garner Moss has autism and when he was finishing fifth grade, his classmates made a video about him, so the new students he would meet in the bigger middle school would know what to expect. His friend Sef Vankan summed up Garner this way: “He puts a little twist in our lives we don’t usually have without him.”

People with autism are often socially isolated, but the Madison public schools are nationally known for including children with disabilities in regular classes. Now, as a high school junior, Garner, 17, has added his little twist to many lives.

He likes to memorize plane, train and bus routes, and in middle school during a citywide scavenger hunt, he was so good that classmates nicknamed him “GPS-man.” He is not one of the fastest on the high school cross-country team, but he runs like no other. “Garner enjoys running with other kids, as opposed to past them,” said Casey Hopp, his coach.

Garner’s on the swim team, too, and gets rides to practice with a teammate, Michael Salerno. On cold mornings, no one wants to be first in the water, so Garner thinks it’s a riot to splash everyone with a colossal cannonball. “They get angry,” the coach, Paul Eckerle, said. “Then they see it’s Garner, and he gets away with it. And that’s how practice begins.”

On his smartphone, Garner loves watching YouTube videos of elevators (“That’s an Otis; it has an annoying fan.”) When John Stec, a swim teammate, met him two years ago, he assumed Garner wouldn’t talk much. “But as soon as you say stuff, he says stuff back to you,” John said. “He knew everyone’s name on the team even before he talked to us.”

This is why Garner’s parents, Beth and Duncan Moss, moved to Madison from Tennessee several years ago. In Tennessee, his parents said, they were constantly battling to have Garner included in regular programs, going through four mediation disputes.

“After third grade there, I told my husband, Garner would go nowhere in life and the family would fall apart,” Ms. Moss said. “We had to leave.” At the time, Ms. Moss, who stopped working as a teacher when Garner was born, was attending autism conferences. “I kept hearing about Madison,” she said.

Families with children with autism and developmental disabilities move from all over the country for the Madison schools. Kristi Jacobsen, whose son Jonathan has autism, moved from Omaha several years ago. She and her three children live here full time, while her husband, who has a financial business in Omaha, commutes back and forth.

“It’s a sacrifice,” Ms. Jacobsen said. “But Jonathan’s made such progress. They give him every opportunity to be part of the community.”

Lisa Pugh’s family moved from Wichita, Kan., for their daughter Erika, 11. A year and half ago Ms. Pugh took a job in Washington, but last month the family returned because, Ms. Pugh said, they missed Madison’s schools.

Build it and they will come. Nationally, about 12 percent of students are identified as disabled, but in Madison 17.5 percent are, according to John Harper, who oversees special education. Mr. Harper said that 88 percent of elementary students with disabilities were fully included in classes, along with 81 percent of middle school students and 63 percent of high school students. Most of the rest have a mix of general and special education classes; fewer than 5 percent are separate.

David Riley of the Urban Special Education Leadership Collaborative said Madison was one of the “big three” leaders in successfully implementing inclusion, along with the schools in Charlotte-Mecklenburg, N.C., and Clark County, Nev.

While it costs Madison $23,000 to educate a child with autism (to pay for extra support staff members) versus $12,000 for a typical child, Colleen Capper, a University of Wisconsin professor, said inclusion was cheaper than segregating students.

For years this liberal university city’s seven-member school board — which includes Ms. Moss, Garner’s mother — has been unanimous in supporting inclusion. “This is not a board that separates our children; it’s a board that believes every child should be educated,” said Marjorie Passman, a member.

Madison is changing, however: an influx of poor children, a migration of wealthier families to the suburbs. Parents of the gifted recently petitioned for more honors classes, and Ms. Passman thinks they’re needed.

Times Topic: Michael Winerip
One parent, Laurie Frost, said: “I am not convinced that even the most masterful teacher — and we have many of them here in Madison — can teach effectively to the full range of ability and need we currently have in our public schools. Not at the same time in the same classroom.”

Budget cuts this year, with more expected next, could undermine the fine balance. “The danger,” Ms. Passman said, “is it becomes us versus them. And that’s not good for anybody.”

Ms. Moss hopes not. Garner used to run away and collapse on the floor in despair if he had to change rooms. The schools, she said, have patience with him. In elementary grades his teachers learned to tell when he was about to explode from pent-up energy, and let him leave to ride an exercise bike. In sixth grade, he had his first class without an aide, band.

In ninth, when he went out for cross country, he’d get lost during practice, so the district hired a college student to run with him until he learned his way.

He has always been in general education classes, but usually with an extra teacher or aide. This year, he will be on his own in most classes, including English, chemistry and personal finance. He’s a familiar figure, striding home from school with his swim bag, backpack and alto sax.

His development has always been uneven. He rides the bus downtown to his father’s law office, but can’t tie his track shoes; at meets his teammates tie them. Summer days start with cross-country practice at 8. (In summer, running and swimming are with club teams made up of his high school classmates.)

One day when his mother went to pick him up after practice, he’d run the 1.7 miles home. He rested up and watched a tape from the previous night’s Milwaukee Brewers game.

“When they get a hit, they sprint,” Garner said.

“Yes, they do,” his mother said.

“Do you have to jog when you hit a home run?” he asked.

“Fireworks go off and everyone’s clapping,” she said.

He wants to be a train engineer.

He and his mother drove downtown to meet Mr. Moss for lunch. Garner wanted “something and fries.” He knew the building where they ate was built in 1936 and the route of every bus that passed.

When his mother stopped at a University of Wisconsin building, Garner was excited to see an elevator. “A Schindler,” he said. “That’s the original call button. Hydraulic. From the 1970s. I’m going to ride it up to 5, Mom.” As the doors closed, he could be heard narrating his own elevator video that he was recording on his phone.

His mother had forgotten which garage she parked in, but Garner knew and remembered the car was in Section N.

Swim practice was at 3. “Any new video, Garner?” a friend asked. And of course, there was fresh footage of the Schindler.

Later, when asked what Garner might become, Ms. Moss said: “He’d be most happy working around mass transit, airports, trains, bus stations. He’ll need to be on his feet, not sitting. He likes to be around people, not isolated.”

8. Docs told to avoid 1 flu shot brand for small kids

Kids in Australia, New Zealand who got shot had higher rate of fevers, seizures

By MIKE STOBBE, msnbc.com

ATLANTA — A government panel is recommending doctors steer clear of giving one brand of flu vaccine to young children this year because of convulsions and fever in kids who got the shot in Australia and New Zealand.

At issues is the flu vaccine made by CSL Biotherapies, an Australian company. CSL is one of five manufacturers supplying the U.S. this fall but it only accounts for a small portion of the 170 million doses.
On Thursday, the Advisory Committee on Immunization Practices said doctors should avoid using the CSL vaccine in children ages 6 months through 8 years.

Committee members were concerned about the unexplained higher rate of fevers and related seizures seen in young children who got the vaccine earlier this year in Australia and New Zealand. In kids under 5, the rates were roughly 10 times that of other flu vaccines. No deaths have been linked to the problem.
The panel said the vaccine could be used in children older than 5 if they were at greater risk of flu complications and no other vaccine was available.

The committee provides vaccine advice to the Centers for Disease Control and Prevention, which usually adopts its recommendations and sends the advice to doctors and the public.

Australian investigators have been unable to find anything in the CSL vaccine that might explain why it would cause more fevers and convulsions in children.

But a CSL spokeswoman said the company agreed with the U.S. committee's decision.

"We support the precautionary approach," said spokeswoman Sharon McHale.

She said the company had already decided not to distribute one version of its vaccine intended for the youngest children. That means CSL will only be providing 10.5 million of the 170 million U.S. doses.

9. Antidepressants Not Recommended for Autism

By Crystal Phend, Senior Staff Writer, MedPage Today
Published: August 07, 2010
Reviewed by Zalman S. Agus, MD; Emeritus Professor
University of Pennsylvania School of Medicine and
Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner

Action Points
Note that the authors conclude that off-label use of SSRIs cannot be recommended for adults due to small positive effects and small sample size of the trials.

Note that the authors state that due to emerging evidence that SSRIs are not effective and can cause harm in children, they cannot be recommended as a treatment for children with autism at this time.

Selective serotonin reuptake inhibitors (SSRIs) can't be recommended for treating autism in children or adults at this point, according to a Cochrane review.

The antidepressants have shown emerging evidence of harm without any benefit in pediatric cases, reported Katrina Williams, PhD, of the University of New South Wales and Sydney Children's Hospital in Sydney, Australia, and colleagues in the Cochrane Library.

In adult cases, two small studies have shown improvements in overall symptoms and obsessive-compulsive behavior along with aggression in one and anxiety in the other.

However, this limited evidence in adults is not yet sufficiently robust for clinicians to rely on, Williams' group cautioned.

"Decisions about the use of SSRIs for established clinical indications that may co-occur with autism, such as obsessive-compulsive disorder and depression in adults or children, and anxiety in adults, should be made on a case-by-case basis," they recommended in the paper.

Physicians need to be explicit with parents and patients about the limited evidence, risks of SSRI treatment, and other options, Williams' group added.

Antidepressants have become one of the most commonly prescribed psychotropic medications for autism spectrum disorders and the class for which prescribing has risen most, Williams' group noted.

The researchers systematically searched for randomized controlled trials that compared any dose of oral SSRI with placebo in autism spectrum disorders.

They found five studies that included only children and two that included only adults, for a total of 271 participants. Aside from the one study done in France and one done in Japan, the trials were conducted in the U.S.

The drugs used in these seven trials were fluoxetine (Prozac) in two, fluvoxamine (Luvox) in two, fenfluramine (Pondimin, removed from the U.S. market in 1997) in two, and citalopram (Celexa) in one.

Duration of treatment ranged from five to 12 weeks. Inclusion criteria also varied based on diagnostic criteria and the intelligence level of the participants.

Because each study used different tools to measure outcomes or evaluated different components of the outcomes, Williams and colleagues determined that meta-analysis wouldn't work.

In children, findings included:

  • With citalopram, no significant effect on any component of the parent-rated Repetitive Behavior Scale-Revised (P>0.36 for all), on the composite of clinical global impression and obsessive-compulsive behavior (P=0.28), proportion of responders on the clinical global impression (P=0.99), or obsessive and compulsive score alone (P=0.85)
  • With fenfluramine, no significant change from baseline or compared with placebo on core features of autism on the Behavior Summarized Evaluation
    With fluvoxamine, no improvement in core features of autism, although one study suggested that 10 of 18 patients "responded" to the drug
  • With fluoxetine, a trend for a reduction in the composite of clinical global impression and repetitive behavior compared with placebo (P=0.056), but no significant benefit for clinical global impression alone or compulsion score alone

In adults, both studies were small. Thus, one study of fluoxetine showed improvement in behavior change on the clinical global impression but based on benefit in three of only six patients.

Fluvoxamine in adults yielded improvement in clinical global impression in 53% of participants compared with placebo's 0%.

With regard to other non-core features of autism in adult cases, fluoxetine reduced obsessions (P=0.03) and anxiety (P=0.03) with trends favoring composite obsession and compulsion (P=0.06) and depression (P=0.06).

Fluvoxamine in adults improved both obsession and compulsion scores (P<0.02 and P<0.001, respectively, at 12 weeks) and aggression (P<0.03).

Adverse events in children were significantly elevated with citalopram and fluvoxamine (in one of three trials). Citalopram was also linked to a severe case of seizures that persisted after withdrawal from the drug.

Fenfluramine in children was associated with weight loss overall, two cases of increased withdrawal and sadness, and two cases of increased stereotypies.

Adverse events in adults were not reported in the small fluoxetine study, while fluvoxamine appeared well tolerated.

The reviewers cautioned about the lack of medium- and longer-term follow-up and the absence of trials on the other SSRIs commonly used in clinical practice, particularly sertraline (Zoloft).

The review was supported by the Children's Hospital at Westmead and by Financial Markets Foundation for Children and the Australian Department of Health and Aging.

Williams reported no conflicts of interest to disclose.

A co-author reported having consulted for Eli Lilly and Janssen; having had research grants from Eli Lilly and Celltech; being on the advisory board for Eli Lilly, Janssen, Novartis, and Shire; and having given presentations for Eli Lilly, Pfizer, Janssen, and Sanofi.

Primary source: Cochrane Database of Systematic Reviews
Source reference: Williams K, et al "Selective serotonin reuptake inhibitors (SSRIs) for autism spectrum disorders" Cochrane Database of Syst Rev 2010; 8: CD004677.

10. Mother Of Drowning Victim Pushes For New Child Alert System

The "Mason Alert" would be designed specifically for missing children and adults with special needs.
Cayle Thompson, ABC 10 kake.com

Sheila Medlam surrounds herself with photos of her family. In almost every frame you can see the smiling face of her son, Mason. She cries quietly as she remembers the last night she fell asleep holding Mason's hand.

"I don't want any other mother to endure what I'm enduring," she said. "It's the worst thing that could ever happen."

[Click here for information on the Mason Allen Medlam Foundation.]

Mason, 5, drowned two weeks ago after wandering out of his family's home near Colwich. He was found about 200 yards away in a neighbor's pond. Despite extra locks on the doors and nearly constant supervision, Mason escaped by quietly pushing a fan out of his bedroom window and climbing out of the house.

"Everyday this happens," Sheila said through tears. "Everyday an autistic child or adult goes missing."

Experts say Mason's autism made him more prone to wander away from home. Investigators say Mason's death was a tragic accident.

All of this has led Sheila Medlam to push for change. She wants to start a new missing persons alert system, called a "Mason Alert."

The alert would be similar to an Amber Alert, but would be tailored specifically to children and adults with developmental disabilities.

"If you've met an autistic child, they are absolutely fearless," Sheila said. "They have no fear. And they are attracted to things you do not want them to be attracted to."

Sheila knew her son was attracted to water. It's why she went directly to the nearby pond after a frantic drive from work to look for Mason. Sheila pulled her own son from the water.

She says the rescue teams already on the scene didn't know about Mason's attraction to water, and the pond was hard to see from the road.

"You have to know where to look for them," Sheila said. "And if police had that info, they would have known right where to look for my son."

Sheila says the "Mason Alert" would give authorities crucial information the minute a call comes in regarding a missing special needs child. Photos would be included, along with a list of nearby hazards and the child's interests. Search crews would also receive immediate updates on how the child responds to strangers, fear and stress.

"I think it's such a positive response to such a tragic situation," said Connie Erbert, Director of Autism Outreach for Heartspring in Northeast Wichita. "I would absolutely support this."

Erbert says few families can understand the challenges in raising and caring for a special needs child unless they experience it first hand. What's more, she says, many children never outgrow a mental disability.

Erbert says by taking into consideration special needs adults, the "Mason Alert" becomes particularly unique.

"We all have to work together for that person's lifespan," Erbert told KAKE News. "It's not just from birth to 21, but for the lifespan."

Sheila Medlam has taken her fight to the Internet, starting the Mason Allen Medlam Foundation. She hopes to collect enough signatures and support to send the Mason Alert to lawmakers.

[You can add your signature by clicking here.]

"I'll never stop," she said. "If he saves one life... it will give some meaning to us losing him."


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