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 and tapes 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.

The new theory stems from decades of anecdotal observations that some autistic children seem to improve when they have a fever, only to regress when the fever ebbs. A 2007 study in the journal Pediatrics took a more rigorous look at fever and autism, observing autistic children during and after fever episodes and comparing their behavior with autistic children who didn't have fevers. This study documented that autistic children experience behavior changes during fever.

"On a positive note, we are talking about a brain region that is not irrevocably altered. It gives us hope that, with novel therapies, we will eventually be able to help people with autism," says theory co-author Mark F. Mehler, M.D., chairman of neurology and director of the Institute for Brain Disorders and Neural Regeneration at Einstein.

Autism is a complex developmental disability that affects a person's ability to communicate and interact with others. It usually appears during the first three years of life. Autism is called a "spectrum disorder" since it affects individuals differently and to varying degrees. It is estimated that one in every 150 American children has some degree of autism.

Einstein researchers contend that scientific evidence directly points to the locus coeruleus–noradrenergic (LC-NA) system as being involved in autism. "The LC-NA system is the only brain system involved both in producing fever and controlling behavior," says co-author Dominick P. Purpura, M.D., dean emeritus and distinguished professor of neuroscience at Einstein.

The locus coeruleus has widespread connections to brain regions that process sensory information. It secretes most of the brain's noradrenaline, a neurotransmitter that plays a key role in arousal mechanisms, such as the "fight or flight" response. It is also involved in a variety of complex behaviors, such as attentional focusing (the ability to concentrate attention on environmental cues relevant to the task in hand, or to switch attention from one task to another). Poor attentional focusing is a defining characteristic of autism.

"What is unique about the locus coeruleus is that it activates almost all higher-order brain centers that are involved in complex cognitive tasks," says Dr. Mehler.

Drs. Purpura and Mehler hypothesize that in autism, the LC-NA system is dysregulated by the interplay of environment, genetic, and epigenetic factors (chemical substances both within as well as outside the genome that regulate the expression of genes). They believe that stress plays a central role in dysregulation of the LC-NA system, especially in the latter stages of prenatal development when the fetal brain is particularly vulnerable.

As evidence, the researchers point to a 2008 study, published in the Journal of Autism and Developmental Disorders, that found a higher incidence of autism among children whose mothers had been exposed to hurricanes and tropical storms during pregnancy. Maternal exposure to severe storms at mid-gestation resulted in the highest prevalence of autism.

Drs. Purpura and Mehler believe that, in autistic children, fever stimulates the LC-NA system, temporarily restoring its normal regulatory function. "This could not happen if autism was caused by a lesion or some structural abnormality of the brain," says Dr. Purpura.

"This gives us hope that we will eventually be able to do something for people with autism," he adds.

The researchers do not advocate fever therapy (fever induced by artificial means), which would be an overly broad, and perhaps even dangerous, remedy. Instead, they say, the future of autism treatment probably lies in drugs that selectively target certain types of noradrenergic brain receptors or, more likely, in epigenetic therapies targeting genes of the LC-NA system.

"If the locus coeruleus is impaired in autism, it is probably because tens or hundreds, maybe even thousands, of genes are dysregulated in subtle and complex ways," says Dr. Mehler. "The only way you can reverse this process is with epigenetic therapies, which, we are beginning to learn, have the ability to coordinate very large integrated gene networks."

"The message here is one of hope but also one of caution," Dr. Mehler adds. "You can't take a complex neuropsychiatric disease that has escaped our understanding for 50 years and in one fell swoop have a therapy that is going to reverse it — that's folly. On the other hand, we now have clues to the neurobiology, the genetics, and the epigenetics of autism. To move forward, we need to invest more money in basic science to look at the genome and the epigenome in a more focused way."

Journal reference:

Mehler et al. Autism, fever, epigenetics and the locus coeruleus. Brain Research Reviews, 2009; 59 (2): 388 DOI: 10.1016/j.brainresrev.2008.11.001

Adapted from materials provided by Albert Einstein College of Medicine.

Hyperbaric therapy traditionally involves inhaling up to 100% oxygen at a pressure greater than 1 atmosphere (atm) in a pressurized chamber. In the first randomized, controlled, double-blind multicenter trial, published in BMC Pediatrics and entitled "Hyperbaric treatment for children with autism: a multicenter, randomized, double-blind, controlled trial." Dr. Rossignol and colleagues, from 6 centers in the USA, studied 62 children, aged 2-7 years, to assess the efficacy of hyperbaric treatment in children with autism.

The research trial concludes that children with autism who received hyperbaric treatment at 1.3 atmospheres and 24% oxygen for 40 hourly sessions had significant improvements in overall functioning, receptive language, social interaction, eye contact, and sensory/cognitive awareness compared to children who received slightly pressurized room air.

The children were randomly assigned to either 40 hours of hyperbaric treatment at 1.3 atm and 24% oxygen (treatment group) or slightly pressurized room air at 1.03 atm and 21% oxygen (non-treatment group). Clinical outcomes were evaluated by three different scales: the Clinical Global Impression (CGI) scale, the Aberrant Behavior Checklist (ABC), and the Autism Treatment Evaluation Checklist (ATEC).

Dr. Rossignol said, "In our study, we observed significant improvements in several core autistic behaviors with the use of hyperbaric therapy at 1.3 atm compared to children receiving near-placebo treatment. These findings confirm what we are seeing in clinical practice--that many children with autism may benefit with the use of this treatment."

Director of the International Hyperbarics Association, Shannon Kenitz, said, "With autism on the rise, it is promising to see a study that has been conducted with the high standards endorsed by the medical community. Having this scientifically controlled and analyzed study that shows the positive effects of hyperbarics is truly what this community has needed. The study not only presents the benefit of Hyperbaric Oxygen Therapy for children with autism, but also gives families the hope that so many other therapies have failed to do."

"The impact of this study on the autism community is significant. It brings validity to a successful intervention that needs to become part of mainstream medicine," commented Kyle Van Dyke, M.D., and Autism Specialist from Madison, Wisconsin.

According to Philip James, M.D., an expert in hyperbaric medicine out of the UK, this study is "An article of outstanding merit and interest in its field."

The growing concern regarding autism in this country is reinforced by the critically high ranking this study as earned by BMC Pediatrics. It is currently the most accessed article and projected to continue to climb in significance.

A decompression chamber may help children with autism, say researchers.

After 40 hours of hyperbaric treatment autistic children showed significant improvements in social interaction and eye contact compared with controls.

The BMC Pediatrics study could not show if the results were long-lasting but should prompt further investigation of the treatment, the US team said.

One theory is that oxygen can help reduce inflammation and improve flow of oxygen to brain tissue.

Hyperbaric treatment - effectively giving high concentrations of oxygen at increased atmospheric pressure - has been shown to have some benefit in other neurological conditions such as foetal alcohol syndrome and cerebral palsy.

Some studies have looked at the treatment in children with autism but they have not compared with a dummy procedure raising questions around a "placebo effect".

In the latest study, carried out at six centres in the US, 62 children aged two to seven with autism were randomly assigned to receive 40 hours of treatment over a month with 24% oxygen at increased atmospheric pressure (1.3 atm) or normal air in a slightly pressurised room (1.03 atm).

Children who received the treatment showed significant improvements in overall functioning, receptive language, social interaction, eye contact, and sensory or cognitive awareness.

In all, 30% in the treatment group were rated by doctors as "very much improved" or "much improved" compared with 8% of those in the control group.

Overall, 80% in the treatment group improved compared with 38% of controls.

Behaviour

Study leader, Dr Dan Rossignol from the International Child Development Resource Centre, in Florida, said the use of hyperbaric therapy for autism has been gaining popularity in the US where parents can buy their own hyperbaric chamber if they have a spare $14-17,000.

He said the findings would be quite controversial and he too was initially very sceptical of the idea but was prompted to do more research after the treatment showed benefits for his two sons who have autism.

"We're certainly not talking about a cure, we're talking about improvements in behaviour, improving certain functions and quality of life.

"The next step is to try to find out which kids do respond, because it's an expensive treatment - it may be that kids with more inflammation respond better.

"It would also be nice to know how long the treatment lasts, and the finding needs to be confirmed."

Richard Mills, research director at Research Autism, said this was the first well-designed study looking at the therapy.

"We know this kind of therapy is useful in a number of neurological conditions and that's been well established.

"What we don't know is how useful it is in autism, what we could be seeing is an improvement in other neurological conditions that go alongside autism.

"We also don't know about long-term effects - it could be a transitory effect."

Professor Philip James, an expert in hyperbaric medicine at the University of Dundee, said the pressure used was no more than that used to pressurise an aircraft cabin on the ground.

He added that oxygen was the "controller of inflammation" but also had other effects on regulation of genes and tissue regeneration.

But even if proven, the treatment may not be for everybody.

"When you have any condition, there are people who have too much damage to get better."

"All the oxygen is doing is bringing things towards normal."

It is 1 in 38 boys not 1 in 48 [see calculation at the end]

This is nearly one boy in every class in a boy's school.

You must ask your political representative why s/he is not demanding the Department of Health "cuts the crap"? [Details of how to contact at end]. If you do not, you will only have yourself to blame. And you must keep on writing.

It cannot take modern medicine and science 11 years since 1998 and The Lancet paper to not find the cause unless they have not been looking - and they have not:

• the only things that can be causing this over the last 20 years are the vaccinations and there is published research to support that as well as countless testimony of parents all telling the same story of what happened to their child
• we know this cannot be genetic - genetic epidemics are impossible and research shows it is environmental - which includes vaccines
• it cannot be "greater awareness" or "better diagnosis" - we just did not see these kids 20 years ago regardless of what the Baron Cohen's of this world say [and you never know what he currently says because it changes with his underwear audience]
• we do know the push for vaccinations is commercially driven - as drug companies change their business model to vaccines from the failing one of patented blockbuster drugs - the drugs "pipelines" are drying up
• we do know some drug companies are crooked and some others have, like GSK, been implicated in criminal activity and other civil illegal activity
• we do know the DoH is giving out false figures on the risks of measles and other disease to scare and disease monger parents into thinking they must have their children vaccinated

Contacting Your Politician - UK and USA

USA

Senate

Find Your Congressional Representative

Write Your Representative

UK - Write To Your Politicians - Do It Now! Ask your MP to ask for proper clinical studies comparing vaccinated to unvaccinated children and that these are by independent unbiased objective researchers. Ask that the UK’s Secretary of State explain why the British Government allows officials of the UK’s Department of Health to cause the human rights of children to be violated. To email your MP, all you need to know is your MP’s name. MP’s email addresses are in the form: surname.initial@parliament.uk

To find out who your MP is click on this link: http://www.writetothem.com

The calculation is:

• there are two unknown for every three known
• 1 in 100 children are known cases
• so for every 300 children, there are 3 known and 2 unknown cases [5 in total]
• 4 in every 5 cases is a boy
• roughly half of the 300 children will be boys
• so 4 in 150 boys will have an Autistic Spectrum Condition
• that is approximately 1 in 38

The National Institutes of Health will commit roughly $60 million from the American Recovery and Reinvestment Act (ARRA) to support autism research and meet objectives set forth earlier this year by a federal advisory committee. The Request for Applications is the largest funding opportunity for research on autism spectrum disorders (ASD) to date and, combined with other ARRA initiatives, represents a surge in NIH’s commitment to finding the causes and treatments for autism.

Four grant announcements, sharing a single title, “Research to Address the Heterogeneity in Autism Spectrum Disorders,” will use different funding mechanisms to support a range of research topics over the next two years. Examples of research topics include developing and testing diagnostic screening tools for different populations; assessing risk from prenatal or early life exposures; initiating clinical trials to test early interventions; or adapting existing, effective pediatric treatments for older children, teens, and adults with ASD. For a full listing of possible study topics, see the grant announcement listing in the NIH Guide (http://grants1.nih.gov/grants/guide/index.html). While few trials can be completed in two years, ARRA funds will be important for jumpstarting projects and building the infrastructure or foundation for longer-term autism research efforts.

These topics correspond directly to short-term research objectives detailed in the Interagency Autism Coordinating Committee’s (IACC’s) Strategic Plan for Autism Spectrum Disorder Research (http://iacc.hhs.gov/reports/2009/iacc-strategic-plan-for-autism-spectrum-disorder-research-jan26.shtml), released earlier this month. Comprising representatives of federal agencies and members of the public, the IACC coordinates efforts within the U.S. Department of Health and Human Services concerning ASD. The group’s strategic plan, created with the input of the scientific community, service providers, advocates, parents, and people with ASD, is organized around six critical questions asked by people and families living with ASD:

• When should I be concerned?
• How can I understand what is happening?
• What caused this to happen and can this be prevented?
• Which treatments and interventions will help?
• Where can I turn for services?
• What does the future hold?

Targeting Recovery Act funds toward objectives identified in the IACC strategic plan will help move the science forward sooner than anticipated in addressing some of the most significant challenges to understanding and treating ASD.

As part of the ARRA, these autism grants will promote economic recovery by creating and maintaining biomedical jobs, as well as supporting innovative projects to serve as platforms for future, longer-term research efforts. Beyond those who will receive direct funding for their work, these new grants will also benefit allied health workers, technicians, students, and other groups affiliated with the scientific research community. All grants funded by the ARRA and their outcomes will be posted on a new Web site, www.recovery.gov, providing transparency and accountability.

"The Recovery Act comes at an opportune time for autism research," said Thomas R. Insel, M.D., NIMH director and IACC chair." As reflected in the IACC strategic plan, we have a growing sense of urgency to help the increasing number of children being diagnosed with ASD. With the arrival of new funds, we can immediately start on many of the short-term objectives in the plan and use Recovery Act funds to support science that will facilitate the best possible outcomes for people with ASD and their families."

As with all Recovery Act funds, NIH is required to obligate the $60 million within two years. Answering this mandate will entail a highly streamlined process for reviewing grant applications and allocating funds by Sept. 30, 2010. The National Institute of Mental Health (NIMH), part of NIH, will lead this effort, with participation from the Eunice Kennedy Shriver National Institute on Child Health and Human Development (NICHD), the National Institute on Deafness and Other Communication Disorders (NIDCD), the National Institute of Environmental Health Sciences (NIEHS), and the National Institute on Neurological Disorders and Stroke (NINDS).

Researchers funded through these new autism grants will be expected to contribute to the National Database for Autism Research (NDAR). NDAR was established to serve the autism research community as a common platform for exchanging data, tools, and research-related information, as well as to serve as a portal to and for the broad autism research community. For more information about NDAR or data sharing policies, please refer to the funding opportunity announcements or see http://ndar.nih.gov.

In addition to the NIMH-led effort, NIH will allocate another portion of its ARRA funds for autism research and related programs through the NIH Challenge Grants in Health and Science initiative and other potential programs. These grants will be announced in the coming weeks.

The mission of the NIMH is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery and cure. For more information, visit www.nimh.nih.gov.

The National Institutes of Health (NIH) — The Nation's Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

Unvaccinated children do not pose a threat to vaccinated children or their families.

We all have a responsibility to keep each other's children safe. Choosing to not vaccinate or choosing an alternative vaccine schedule could be considered a rift in that contract. Medically, scientifically and statistically speaking, it is not. Honest people might disagree.

I have been a pediatrician for thirty years and have watched children receive all scheduled vaccines, some of the vaccines or receive no vaccines at all. I have seen every one of the illnesses against which we vaccinate. The last time I saw bacterial meningitis in a child was 1982 but the extreme rarity of this terrible disease means that it makes the news whenever a case occurs. Denying that childhood meningitis exists is dishonest. Equally dishonest is implying that it is a large threat to any of our children. I see kids with pertussis every year. I see children misdiagnosed with whooping cough far more often. Two years ago, the New York Times took note of this phenomenon:

New York Times article

2009 marks the thirty year anniversary of the last case of "wild polio" in the United States. Subsequent cases were caused by the oral polio vaccine which is no longer used in this country.

WHO/CDC supported site

Rubella is no longer an "American" disease .

CDC Press Conference

I recently read an article, written in 2009 which chastised non-vaccinating parents because there had been 131 cases of measles in the U.S. in the first half of 2008 alone. And how many cases were there in the whole year? 134. The usual number? 62. Disingenuous reporting. An extra 72 cases of measles among 300,000,000 Americans made the papers every day or two for months and the LA Times writers dredge up the child who caught measles on a Swiss vacation one more time.

Yes, as mentioned, measles and other viruses can cause encephalitis. It's very, very rare. Implying otherwise could scare parents.

And, no, the law does not allow us to know which children have not received vaccines any more than it allows other invasions of privacy.

I have received hundreds of emails from people all over the country and the world reaching out to me and asking me to listen to them about vaccine issues and injuries because it seems that no one else will. I have permission from a mother to forward email she sent to me-with a picture-of her four month old daughter who received four vaccines and died shortly thereafter. I have dozens and dozens of similar emails and dozens of face-to-face encounters in my office with parents coming to me after what they considered to be vaccine damage to their children. I will not forward that email. It creates a different kind of fear that also doesn't serve the dialogue well.

I think that these possibly injured children and families represent one end of the bell shaped curve and that scary stories about meningitis in Minnesota (the first there in 18 years) represent the other end. (I do feel that the former end of the curve is far fuller than the latter but no proof exists. None.)

The LA Times stories were "fear-based" just as my forwarding these emails would have been.

The University of Michigan Law Review recently invited me to write a journal article about vaccines and tort law and you can read it here:

http://www.michiganlawreview.org/firstimpressions/vol107/stewart.htm

I sum up my law review presentation to parents every winter by telling them that the only way to avoid childhood illnesses is "reverse isolation" of your illness-free child. If you go to a two-year-old's birthday party during the winter months . . . You will probably get sick.

Peripherally, let's all remember that it took fifty years or more, thousands of court cases and a lot of money to finally prove the connection between cigarettes and cancer. The three court cases showing no connection between vaccines and autism should make no headlines and should be an impetus to honest investigative journalism.

We have increased the number of vaccines and the combinations of vaccines given to babies and children. Adequate testing has not been done. I have seen a huge rise in the number of children with autism. Neither I nor any other doctors are hundreds of percent better at diagnosing this spectrum of developmental delay than ten or twenty years ago. The dramatic rise in the number of cases of autism spectrum disorders is attributable to something other than "reclassification" or better diagnosis.

While waiting for scientific proof, we have to tolerate families' completely legal and scientific desire to have or not have their children given vaccines according to the current schedule.
Best,

Jay

http://www.drjaygordon.com

April 1, 2009

*Essence.com is featuring an open letter from Holly Robinson Peete to actress Amanda Peet regarding her comments about autism, a disease she believes struck her 11-year-old son after he received vaccinations when he was just 2-and-a-half.

Peete is the first African-American to sit on the board of Autism Speaks, an organization dedicated to increasing awareness and prevention of the disease. She shares her thoughts with the Web site about comments made by Peet, the spokesperson for vaccinateyourkid.org, who recently said that vaccinations don't cause autism.

I'm really disappointed to hear people like Amanda Peet—who have never been affected by autism—make public allegations like vaccinations don't cause autism. It makes me angry because it's so disingenuous to have this kind of public discussion, especially when World Autism Awareness Day is coming up on April 2.

But I know exactly what she is trying to do and that's to instill fear: if your child doesn't get vaccinations, you're going to make every other child sick. Believe me, I understand both sides of the argument because I have four children. Although I have total respect for what any mother feels is best for her child, you can't tell me what is right, because it's not necessarily going to work for my kid. I know because I've experienced it with my eldest son.

When my son was 2-and-a-half, he was just recovering from an ear infection and had been on antibiotics, therefore his immune system was suppressed. He had already missed several appointments for his vaccination so his pediatrician wanted to catch him up on all of them in the same day.

Although I asked if he'd consider waiting or breaking up the cocktail, which contains three viruses, he laughed me out of the office and belittled me. I firmly believe that it took my son to a place of no return and his body could not handle it. He had a violent reaction with convulsions and then he stopped talking and slipped into a silence. He no longer said, "Hi, Mommy," he no longer responded to his name and he no longer made eye contact. And to think that today there are more than 30 vaccines that children are required to receive is scary. I don't know why boys are five times more likely to become autistic, but they are.

I respect Amanda Peet for advocating for her children by trying to keep them safe with vaccines. If I could talk to Amanda Peet, I would say that, I'm glad your child was able to tolerate that level of toxicity, but don't expect me—after witnessing what vaccinations did to my son—to inoculate my other children under the same circumstances.

So who's to blame? Is there some pre-genetic predisposition? Do genetic and environmental factors load the proverbial gun and the vaccines pull the trigger? Since you claim all the studies and conclusions have been drawn, how do you explain the thousands of families that have received millions of dollars from the Vaccine Injury Court? So clearly, the jury is not in and the independent studies on susceptibility and genetic predisposition have not been done.

Knowing all this do you think it's okay to make a judgment about me based on what I know about my son and the rest of my children physiologically? If your mission is to gain the public's trust, then you're not going to get parents to do it by fearmongering. Until you've experienced the physical, emotional and financial toll you simply can't make such public statements.

Despite what happened to my son, I'm not anti-vaccine. However, if the government wants to make me and other parents who have autistic children feel comfortable with vaccinations then there needs to be some independent studies done regarding these treatments. Not only would it make me feel comfortable, but it'd make me feel like I'm being listened to and heard.

Lastly, to Amanda Peet: I would never ever wish what we've gone through in our family on her and her family or anybody. I would just ask her to give the respect she has on her position to mine. It's not about reading so-called studies online; it's about living and learning. My study is my son.

The provisional appointments to the IOM's new Committee to Review Adverse Effects of Vaccines have been posted to the Current Project System on the National Academies' website. The 20-day period for formal public comment on the provisional appointments begins today. [http://www8.nationalacademies.org/cp/projectview.aspx?key=49055]

The project director is Kathleen Stratton. The project email address is VaccineSafety@nas.edu and the project phone number is 202.334.2077. Check the project website [www.iom.edu/VaccineAdverseEffects] in approximately a week to sign up for the project listserv.

If you want to clearly understand the strength of the Cedillo case and how appalling the decision by Special Master Hastings was you need to set aside no more than 20-30 minutes to read this appeal.  (Lawyer’s hint to non-lawyers – You don’t need to read the footnotes.) Read the appeal HERE.

All the best,
Kent Heckenlively

See TACA Omnibus Statement