Tuesday, December 14, 2004

Overloaded: Genes & Environment Report from EWG

A new report from Environmental Working Group thoroughly and readably presents much of what I've been saying about an epigenetic (genes interacting with environmental exposures) theory of autism. [Full disclosure: a friend of mine is on the board of EWG and I think they do good work on an array of issues where there is a tight coupling of environmental protection with human health.]

The whole report is available here:
http://www.ewg.org/reports/autism/execsumm.php

For just the top line, here's the press release:

For Immediate Release: December 13, 2004

New Evidence Suggests Link Between Mercury Exposures And Autism


Scientists Identify Trait in Autistic Children That Makes Them More Susceptible To Harm From Toxic Metals


Washington, D.C., Dec. 13 -- A year-long review by Environmental Working Group (EWG) finds that a near-universal trait in autistic children suggests a possible link between autism and children's exposure to mercury. EWG's review corresponds with the publication of a new study by Dr. Jill James of the University of Arkansas for Medical Sciences. James served for fourteen years as a senior research scientist with the Food and Drug Administration and is currently Professor of Pediatrics at the University of Arkansas for Medical Sciences.

In a paper published this week in the American Journal of Clinical Nutrition, James and her colleagues identified a signature metabolic profile in autistic children that strongly suggests that these children are more susceptible to the harmful effects of mercury and other toxic chemicals.

The EWG study finds that autistic children have a common weakened ability to protect themselves from the effects of small amounts of toxic metals in their bodies. This trait appears as a severe deficit of active glutathione in autistic children when compared to healthy children. Glutathione is a potent antioxidant that is the body's most important tool for detoxifying and excreting toxic metals.

While a review published earlier this year by the National Academy of Sciences Institute of Medicine concluded that available science showed no mercury-autism link, it left open the possibility that vaccines preserved with mercury might trigger autism in a small subset of susceptible children. The new study by James and her colleagues examines precisely the issue of susceptibility in a small subpopulation.

The findings raise serious concerns about autistic children's overall exposure to environmental contaminants. Mercury is of particular significance because of its proven toxicity to the developing brain and nervous system, and its documented high exposures from a variety of sources such as canned tuna, dental fillings and vaccines preserved with mercury-based thimerosal.

This study significantly strengthens the possibility that mercury is linked to autism and other neurodevelopmental disorders. It also points to a subgroup within the population that may be vulnerable to a number of environmental contaminants.

"The autism epidemic is alerting us to the importance of individual susceptibility to environmental pollutants," said Richard Wiles, senior vice president of EWG. "Environmental safeguards that protect a theoretical 'average' person still leave thousands at risk. Increased understanding of susceptibility will provide the basis for stronger health policies that truly protect the most vulnerable."

# # #

Sunday, October 03, 2004

Eat Your Mercury

Yes, studies show that a known neurotoxicant is not associated with problem developmental outcomes, but rather has a progressively protective effect within the range of exposures sourced to vaccines. This report of two studies published in Pediatrics suggests just how little faith we should put in all the population studies of thimerosal and outcomes.

The emerging consensus is that autism is epigenetic -- a genetically determined subset of the population is vulnerable to an increasing set of environmental exposures. So don't be snowed by non-science like this.

Instead, look at Madeline Hornig's study in Molecular Psychiatry, June 2004.

____________________________________

Mercury-Containing Vaccines Have Salutary Effects in Children

NEW YORK (Reuters Health) Sept 17 - Immunizing infants with vaccines containing the preservative thimerosal may actually be associated with improved behavior and cognitive outcomes, according to two British studies published in the September issue of Pediatrics.

It has been hypothesized that ethylmercury contained in thimerosal-preserved vaccine is associated with developmental disorders in young children. The Institute of Medicine recently released the last in a series of reports concluding that there is no such link. However, many individuals remain unconvinced that the agent is safe.

Dr. Jon Heron of the University of Bristol, and colleagues prospectively followed 12,956 children, born in 1991 and 1992, until they were 91 months old. Data was collected on doses of thimerosal-containing diphtheria/tetanus/pertussis vaccines given at ages 3, 4, and 6 months, as well as on measures of behavior, fine motor skills, speech, tics and special education needs.

Instead of finding that outcomes were worse with increasing exposure to thimerosal, the authors observed significant inverse associations between exposure and hyperactivity at 47 months, conduct problems at 47 months, motor development at 6 months and at 30 months, difficulties with sounds at 81 months, speech therapy, special needs and other difficulties and disabilities,

After adjusting for potential confounders, such as birth weight and maternal education, there was only one marginally significant finding that linked exposure by the age of 3 months with "poor prosocial behavior" at 47 months. Otherwise, of 69 statistical tests performed, eight outcomes suggested a more beneficial outcome as a result of increased exposure.

In the second report, Dr. Nick Andrews of the Communicable Disease Surveillance Centre, London and colleagues conducted a retrospective cohort study involving 107,152 children born between 1988 and 1997.

In analyses adjusted for gender and year of birth, there appeared to be protective effects from thimerosal-containing vaccine exposure for general developmental disorders, attention-deficit disorder, and unspecified developmental delay.

The only condition associated with increased risk with increasing thimerosal exposure was tics. However, "the vast majority of tics were minor transient events," the authors note.

Hence, they conclude that "there is no reason to change current immunization practices with thimerosal-containing vaccines on grounds of safety."

Pediatrics 2004;114:577-591.

Wednesday, September 01, 2004

Newly diagnosed - advice on what to do

Mothering Magazine has a comprehensive answer by Edmund Arranga to a question on where to begin when diagnosed with autism.
Mothering Magazine - ask the experts

Wednesday, August 11, 2004

Educating Your Pediatrician Part I: Developmental Screening

In the opening of the new book Not Even Wrong: Adventures in Autism, Paul Collins recounts how a regular pediatric checkup for his 2 1/2 year old son ends with a diagnosis of ASD. Elapsed time, less than 20 minutes. For many parents of children on the autism spectrum, that chapter is heartbreaking for what happens because the pediatrician does everything right -- she notices the gaps in Morgan's social behaviors and is not reassured by Collins' insistence that the boy does speak -- she asks about how the boy does and does not use language. Why is this exemplary professional's conduct heartbreaking? Because the typical experience of spectrum parents is of multiple checkups in which various parent concerns about verbal, social and sensory behaviors were raised with the clinician, only to be dismissed as overconcern or anxiety.

Plainly, when pediatricians are knowledgeable about their responsibility and capacity to provide preliminary developmental screening and refer for multidisciplinary evaluations when screening criteria are met, they can do just that. When they fail to do so, precious months of opportunity for effective intervention are lost.

And pediatricians don't even have to have gotten religion about the possible environmental, consumer, and medical sources of exposures that many believe contribute to the rise in autism. A new campaign from the CDC and the American Academy of Pediatrics, Autism A.L.A.R.M. promotes the use of a simple screening tool and referral for further evaluation for children who do not pass the screen. Even the conventional medical professionals are promoting early detection -- there is no controversy here.

Those among us who suspect a role for mercury (from all sources or vaccines in particular) will find it ironic that the Autism A.L.A.R.M. recommends lead exposure screening rather than mercury. But I'm even OK with that -- lead is a bad thing to have in your system, and spectrum kids often have behaviors that place them at greater risk for exposure.

First Signs has materials about the M-CHAT (Modified Checklist for Autism in Toddlers) which is a well-tested, easy to use measure for general practice pediatricians to use during a regular office visit. They have a conventionally respectable advisory board, professional looking training materials, and the truly key materials -- the MCHAT instrument and scoring instructions -- can be downloaded for free.

Docs for Tots has materials for doctors on an array of child welfare advocacy issues, including Part C Early Intervention Services.

So, if you haven't abandoned entirely the pediatric practice where they put off your concerns, or if you are taking your newborn sibling of a spectrum child to the same practice or a new one, take along some of this stuff.

And if you do want to refer your child aged 0 to 3 to Early Intervention in New York City, take along the referral form. You don't need the doctor to send it in, but the form does ask for some information that they will have if you don't.

Thursday, August 05, 2004

August Meeting: Positive Behavior Intervention and Support

Many of us have seen that our children learn best, and some of them exclusively, through a method called Applied Behavior Analysis. Positive Behavior Support takes some of the key principles of ABA and translates them to tactics to managing problem behavior and encouraging positive behaviors throughout the day at home and in the community.

At my house, this has been no miracle, but a framework for replacing my naturally occuring "frustration parenting" tactics that don't work with behavioral ones that eventually do. One rule of thumb under PBIS is to deliver 5 positive statements (good sitting, nice quiet voice, etc.) for every correction. I rarely accomplish that ratio, and have yet to observe anybody who consistently does, but I think it is a useful target to keep in mind.

Research and training programs on Positive Behavior Intervention and Supports are supported by the federal Dept. of Education's Office of Special Education Programs, and PBIS professional training facilities throughout New York State, including one for New York City are funded by VESID (new grantees under the expanded program will be announced soon, the request for proposals for the training centers closed in early July). This is good news, because many of us have observed teachers (even in some ABA programs) using the same frustration tactics, like yelling, that never work with our kids.

The University of South Florida's Center for Autism & Related Disorders has a very nice overview handout (pdf) on PBIS that we used for our discussion.

We also looked at materials from the Rehabilitation Research & Training Center for Positive Behavioral Support, one of several OSEP funded programs, to discuss a range of PBS "practices", including: Proactive Support Strategies, Teaching Replacement Skills, Positive Consequence Strategies, and the Competing Behavior Model. We found the Competing Behavior Model a little too complicated, but many gave examples of the importance of teaching more appropriate or adaptive replacement skills, of preferentially rewarding positive behaviors, and anticipating especially challenging transitions and providing extra support to get over those bumpy spots.

And, we had two new faces at this month's meeting. Welcome Valerie and Maria!

Friday, July 30, 2004

Calling the NYC Board of Education

This is a bit of a test post as I just signed on to our exciting new blog and I'm eager to dive right in. Ever try to call the NYC Board of Ed?  Need a cpse meeting, annual review or an evaluation?  Well, a bit of advice.  Don't leave a message on someone's machine.  They never, ever, ever will call you back.  For those who need the NYC Bd of Ed. number, I've permanently etched it in my brain--it's 9173391600.  The other day, I was calling the Bd. to get an annual review for my son.  I must have called about 15 times before I got someone who could help me..an actual real person.  A bit of advice.  Once you dial that number, just press 0 for operator--then pray that the operator will answer.  If he does, you're golden and explain to him who you want.  Often you will get a non-working number and/or a message saying--I'm on vacation, I'm no longer in this position, I no longer work for the Bd of Ed.  Then, dial the main number again, hope and pray you are actually connected to the operator, tell him you DON'T want to be connected to a voicemail, that you want a real live person. Do those people exist at the Board of Ed?  FYI, did you know that staff at the board only works from 8:30 a.m. to 1:30 p.m. the entire summer?  I want a job like that.  Pleazzzze.  Okay, back to your quest.  Once you reach a real, live person after about an hour or so...be VERY VERY nice.  Compliment them on what a great job they are doing, say how nice they are to help you.  Catch the bee with honey.  Take their phone number and make them promise to call you back.  Tell them you can't sleep at night, you're having a nervous breakdown if you...don't get an evaluation, appointment for an annual review, whatever.  They will feel sorry for you.  Afterall, you are trying to do your job as a parent.  Is that so wrong?  So, now you've got a person who is seemingly trying to help you.  Once you put in your request, get their phone number, just hope and pray they will take pity on you and call you back. I guarantee this method will work.

Wednesday, July 21, 2004

Facetime Group Goes Online

The Downtown Spectrum Parent Support group has been meeting since 2000. Lots of stories, wisdom, and warmth has been shared across a coffeeshop table. Now we're ready to archive the best information, questions from our monthly sessions and open the the group up for more people.

The objective of this group is to share information about raising kids on the autism spectrum in New York City.

Spectrum parents everywhere should read the Schafer Autism Report, a free newsfeed of events, news items, and research.