First Meeting of New IOM Committee on Vaccines and Adverse Effects
Olmsted on Autism: Columbine's Unlearned Lesson

Popular Science Fiction is Little Comfort to Parents of Children with Autism

Safety first sign Managing Editor's Note: This post is from our sponsor SafeMinds. "Vaccine safety is a primary concern of the general public. An investment in a national vaccination program with a SAFETY FIRST agenda is necessary and it needs to be transparent and accountable to an independent public oversight board with the guiding principal of improvement in total human health outcomes inclusive of reduction in vaccine-associated adverse events as well as occurrence of infectious disease."

By Theresa Wrangham

It was very exciting to see autism take the spotlight on Larry King Live earlier this month.  The offering of science fiction by Dr. Fisher and Dr. Wiznitzer in stating that the American Academy of Pediatrics (AAP) is listening to the concerns of families of children with autism; implying that autism screening, as recommended by AAP, is happening as early as 18 months; that there is value in having a child diagnosed with autism due to services and money that follow the diagnosis; there is no autism-vaccine link; and everyone's favorite - autism is a highly genetic disorder is wearing a little thin. 
 
These doctor's opinions do not jibe with the Center for Disease Control (CDC) 2007 surveillance study, Harvard's study on autism's cost to society and families, vaccine court rulings, or the recent U.C. Davis MIND Institute study.  The CDC's study found that children with autism had a documented history of concerns regarding their development before three years of age, with the median age of earliest documented autism spectrum disorder (ASD) diagnosis ranging from 49 to 66 months.  In simple terms, the study found that parents voiced developmental concerns early to their pediatricians and yet screening that should have been performed by pediatricians were delayed resulting in late diagnosis. 

Late diagnosed children impact special education at higher than necessary levels and tax an already underfunded education system to its limits.  Late diagnosis also contributes to increased financial burdens on families in picking up therapy fees, many of which are not covered by insurance, due to having aged out of Federal and State funded early intervention programs.   To quote a famous line, "Show me the money!" 

The truth is far more painful. Many families of children with autism experience extreme financial hardship as a result of their child receiving an autism diagnosis.  While a diagnosis puts a child on the road to treatment, there is no money tree being planted in any family's backyard.  A Harvard University study put societal costs for caring and treating individuals with autism in the U.S. at $35+ billion per year.  Direct costs per ASD individual are estimated to be between $29,000 - $43,000 per year with annual indirect costs to the individual and/or family estimated to range from $39,000 to nearly $130,000. 

Former National Institute of Health Director, Dr. Bernadine Healy brought common sense to the exchange on Larry King in stating that no one in the autism-vaccine conversation is anti-vaccine and recognized the need to explore environmental triggers in the causation of autism, including vaccines. Exploration of environmental factors in stopping the rise of autism was also echoed in January’s edition of Epidemiology. Dr. Irva Hertz-Picciotto’s study from U.C. Davis M.I.N.D. Institute found that of the 600% rise in California’s autism rate, approximately 75% could not be attributed to expansion in diagnostic criteria and heighted public awareness. The study called for researchers and policy makers who have focused attention and money on genetic causation to shift their emphasis to environmental threats including chemicals, such as heavy metals, pesticides and infectious agents.

The vaccine concerns that many in the autism community, as well as scientific community, have voiced are not anti-vaccine in nature and are instead, focused on closing vaccine-safety research gaps that public health policy has not addressed. Leaving research gaps unaddressed has resulted in the continued erosion of public confidence in the national vaccination program and inconsistent vaccine court rulings both for and against vaccine induced autism. The question of a link, however, has been answered by the court in that awards for vaccine induced autism have been made. Gaps in science must be closed to allow the Vaccine Injury Compensation Program to have the fullest scientific understanding of vaccines and any associated adverse events leading to injury available during award deliberations and to provide more consistent rulings in future.

The autism community agrees with Dr. Lou Cooper, who stated during February’s Institute of Medicine (IOM) National Stakeholder Meeting on the National Vaccine Plan that vaccine communications should be coordinated and based on sound vaccine safety science and to date, it had been “done on the cheap” and was seriously deficient. At the IOM’s most recent stakeholder meeting held this week, Dr. Cooper again criticized the CDC’s spending of $300 billion on vaccine promotion, while spending only $20 million on vaccine safety research.

Other positive statements made by non-consumer representatives at this meeting included the need for independent oversight of the national vaccination program, enrolling representative populations into pre-licensure clinical trials, improving the quality of reports submitted to VAERS, identifying genetically susceptible sub-groups at higher risk of experiencing vaccine adverse events, decreasing the amount of time it takes to respond to the public’s vaccine concerns, and making post-licensure vaccine studies a priority for the National Institutes of Health.

Also of great importance is the National Vaccine Advisory Committee Vaccine Safety Working Group’s endorsement this week of the Salt Lake City Writing Group’s recommendation for an external expert committee with broad methodological, design, and ethical expertise to consider the “strengths and weaknesses, ethical issues and feasibility including timelines and cost of various study designs to examine outcomes in unvaccinated, vaccine-delayed and vaccinated children.”

There was, of course, considerable push back and forth on these topics during the IOM meeting. However, the fact that they are mentioned at all by panelists not representing a consumer perspective is significant in and of itself and represents not only that our concerns are shared in the scientific community, but that our suggestions for remedy have credence.

As April is National Autism Awareness Month, it is ironic that these basic awareness points continue to be debated in public in lieu of a more productive dialogue. It is essential that physicians in any public spotlight have an awareness of research trends in relation to autism’s etiology and be abreast of the science to date. Vaccine safety concerns are much broader than the autism community and the importance of honest communications with parents on what is known, what is being done to address research safety gaps and how the public’s eroding trust will be restored cannot be overstated.

Vaccine safety is a primary concern of the general public. An investment in a national vaccination program with a SAFETY FIRST agenda is necessary and it needs to be transparent and accountable to an independent public oversight board with the guiding principal of improvement in total human health outcomes inclusive of reduction in vaccine-associated adverse events as well as occurrence of infectious disease.

Theresa Wrangham is the mother of Rachel, a teenager who is diagnosed with PDD/NOS, and Deanna. She lives in Colorado with her husband, Scott.  She brings to the fore an experienced parent's perspective on raising a healthy child affected by ASD and the benefits of advocacy outside family needs. Theresa was appointed to the Board of SafeMinds in 2007 and currently serves as president. She served as a past Board Member with the Autism Society of Colorado and co-founded the Autism Society of Boulder County (ASBC), serving five terms as president. She is currently the immediate past president. Theresa is also the Director of Educational Development and Conference Liaison for the US Autism & Asperger Association.

Lee Silsby logo 09 The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

Comments

Stagmom

How long before Pharma, Offit, Singer and maybe even AS start building "Autism Group Homes" to capitalize on the thousands of kids they never bothered to help - whose parents they told, "Trust us, there's nothing you can or SHOULD do?" I see it coming down the pike. Cities of angels. Our children. Cared for by $7.00 an hour aides and drugged into oblivion. It's a coming. Just watch. Unless.....

Anne McElroy Dachel

Excellent piece. According to the CDC and the AAP autism is some mysterious genetic condition that we haven't been able to figure out yet. They recognize NO INCREASE--JUST BETTER DIAGNOSING.
They continue to tell us that in addition to no prevention, there is no effective treatment and no cure.
So why have Autism Awareness Month?
The motto of the CDC/AAP regarding autism is:
AUTISM HAPPENS--LIVE WITH IT.
Anne Dachel
Media editor

focus on awareness

This is the kind of awareness that autism needs. Thank you for doing this and getting it right!

CT teacher

I wonder if the autism community's message should be "vaccination choice" rather than "safer vaccines or safer vaccination schedule". It seems oddly discordant to be saying "we are pro vaccine" or "we can't stop vaccinating" coupled with the other message that vaccines are causing the physical and neurological illnesses of our children. If one believes that to be true, why encourage new parents to vaccinate as usual and risk damaging their children as well? I would encourage all of the prominent people who speak publicly for the autism community to read the VIRUS AND THE VACCINE by Bookchin and Schumacher before declaring that they believe vaccines can be made safe. An article about the same subject appeared in ATLANTIC MONTHLY in 2000. It is the well researched and documented tale of the development of the polio vaccines. After reading that, one should begin to wonder if it will ever be possible to make a safe vaccine or to pinpoint 1 single cause of autism. I now believe that vaccines are the cause of most of the diseases that plague us.

Jeanne

Excellent piece Theresa. Thanks for all you do for our kids and families.

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