Searching for Reasons Why: A Mother’s Report on Autism

Issue 115, November – December 2002

mother with sonWill was the perfect baby. He ate and slept well, played, walked, and talked, all by one year. Shortly after his first birthday, however, things changed dramatically. He developed multiple infections, including strep throat, rotavirus, and an upper respiratory infection, the latter requiring hospitalization. It was at this time that he began to regress. He lost speech, interaction, and eye contact. Although he was often in his own little world, he remained very affectionate and loving.

Will was evaluated for his unexplained regression with an MRI, sleep study EEG,  and ABR (brainstem evoked hearing test). He even had tympanostomy tubes inserted in his eardrums, all without any answers or improvement. When I asked one doctor what to do next, he said, “Why don’t you just take your son fishing?” Well, I took his advice and went fishing–fishing to find some answers to what had happened to my perfectly normal son, what had taken him away. Until one day, I felt like I finally had a bite on the line.

I’ll never forget it. I was reading my e-mail and came across a post from FEAT stating that the FDA had determined that “Infants who received thimerosal-containing vaccines at several visits may be exposed to more mercury than recommended by federal guidelines for total mercury exposure.” It took months for the full ramifications of this statement to hit me. I still wake up some mornings and think that I’ve been reading a Stephen King novel, that this could not have really happened. Unfortunately, this story is nonfiction. Thimerosal has been used as an additive to vaccines and biologics since the 1930s to prevent bacterial contamination. Present in some, but not all, infant vaccines, it contains 49.5 percent mercury by weight. In 1982 the FDA acknowledged that thimerosal was toxic, caused cell death, and was no more effective in preventing bacterial growth than water. At that time a recommendation was made to remove thimerosal from all over-the-counter (OTC) products, but somehow it is still used in them as well as in vaccines and prescription products.

Initially, I never considered any link between Will’s vaccines and his diagnosis of pervasive developmental disorder. Then I attended a conference on autism and heard , MD, speak about finding measles virus in the guts of children with autism. Although I’d never questioned the safety or effectiveness of vaccines, I was concerned with these findings. Will had developed unexplained intermittent bouts of bloody, culture-negative diarrhea after his MMR (measles-mumps-rubella) vaccine, which correlated with Wakefield’s findings, but he had actually started his regression and loss of speech a few months earlier.

When I reviewed Will’s , my worst fears were confirmed: all of his vaccines that could have possibly contained thimerosal did. At his two-month well-baby visit he received the DT and Hib (Hemophilus influenzae type b) vaccines, both of which contained 25 mcg of mercury, and a hepatitis B vaccine, which contained another 12.5 mcg. According to EPA guidelines for safe daily mercury exposure based on weight, Will’s allowable exposure for that day was only 0.5 mcg–but he had received 62.5 mcg! He continued to receive high-dose intermittent exposures to mercury in his vaccines; by 18 months he had been exposed to 237.5 mcg of mercury. I later found out that the immune globulin injections I had taken during the pregnancy to prevent Rh blood incompatibility were also preserved with thimerosal.

I shared this information with my husband, who is a physician, and together we repeated the calculations. We discovered that, based on Will’s weight, he had received an exposure to mercury approximately 125 times the EPA’s safe allowable daily exposure. We found it perplexing that the FDA’s statement characterized the exposure to mercury in vaccines as being small and only a theoretical risk. Reviewing the FDA calculations, we noticed that the FDA  had looked at the exposure to mercury in vaccines over the first six months of life as though children were being exposed on a daily basis. So the daily safe exposure levels of 0.1 mcg per kilogram were multiplied by 180 days, even though the exposures occurred on only three or four days out of 180.

Knowing that the major effect of mercury compounds was neurotoxicity, I wondered if my son’s mercury exposure could account for his regression into autism. I called a toxicology lab for information about mercury testing and learned that mercury could be detected in the blood only if the exposure had been recent (in the last 50 to 70 days) or was ongoing. Since my son was now five and a half years old, they said, I would not be able to accurately determine his exposure levels during infancy. I remembered reading that hair is often utilized to determine heavy-metal exposure. But again, it was only accurate for about one year after the exposure, so a sample now would not provide any information about Will’s levels during his first year of life. I’d almost given up when I came across some of Will’s hair from his first hair cut, which I had saved in his baby book.

I sat staring at the beautiful brown locks, knowing I would have to give them up to answer this nagging question. With little hesitation, I packed them off to the lab. A few days later, my husband and I were on our way to our first Defeat Autism Now  (DAN) conference. I knew it would be days before we would return and get the results of the hair analysis. Just in case the test had been completed early, I called the lab on the way out the door. To my surprise, the test was complete, and they faxed us a copy of the report. As the paper crept slowly out of the fax machine, I noticed that two metals were way out of the normal reference range. They were mercury and aluminum, both of which were present in Will’s early vaccines. A mercury level of 1 ppm is considered the EPA’s action level, and a level of 5 ppm is diagnostic for mercury toxicity. The analysis of Will’s hair from when he was 20 months old revealed 4.8 ppm mercury.

The lab had gone a step further, describing his exposure as endogenous (from within the body), and not from an external contaminant. Since at 20 months Will had never eaten fish and had no dental amalgams, I could not identify any other source for mercury at the time except the thimerosal in his vaccines and the immune globulin injections I had received during the pregnancy. (However, later I discovered he had been exposed to environmental mercury emitted by coal-burning power plants.) I felt anger, anxiety, and relief, all at the same time. I had no idea what the levels meant, or what, if anything, could be done; but the lab report had given me a long-sought answer. It was one of only a few test results that had ever returned with a detectable abnormality.

I quickly turned to the medical library and the Internet to find out everything I could about mercury. The more that I researched, the more uncertainty I uncovered. The type of mercury in thimerosal is ethyl mercury. All guidelines for mercury exposure address only methyl mercury. No guidelines exist for the ethyl compound. Both forms are associated with neurotoxicity in high doses, but there are no data regarding the doses at which developmen­tal effects occur in infants.

Through the Internet, I made contact with a group of parents in New Jersey who were also researching the mercury-autism link. On Thanksgiving morning I received a call from Albert Enayti, president of New Jersey Cure Autism Now (CAN) . He had been working with two other parents, Sallie Bernard and Heidi Roger, collecting articles on mercury for a research paper. We all agreed that the overlap of the symptoms of mercury toxicity and those of autism was too extensive to be  a chance occurrence.

After months of almost daily communications and conference calls late into the night, we put together a paper that reviewed the literature describing the associations between autism and mercury neurotoxicity.1 To further document our concerns, I opened a website and discussion site and began collecting reports from parents with similar histories of high levels of mercury in their autistic children. Woody McGinnis, MD, who has an interest in mercury toxicity, heard of our efforts and contacted me. Together we compiled several case studies of children with autism who had also been found to have elevated mercury levels. Teresa Binstock, a well-respected autism researcher, became actively involved and has helped in the organization and preparation of our paper.

We presented our paper to officials at the CDC (Centers for Disease Control) National Immunization Program, the FDA Center for Biological Evaluation and Research, and numerous agencies of the National Institutes of Health. We also took our concerns to the House Committee for Government Reform, which held a hearing in July 2000 titled “Mercury in Medicine: Are We Taking Unnecessary Risks?” Parents, including myself, and professionals testified concerning the excessive amounts of mercury that infants had received due to thimerosal-containing vaccines. In an effort to further our research into mercury and advocate for its removal from the market, we formed a nonprofit organization called SAFEMINDs—Sensible Action For Ending Mercury Induced Neurological Disorders.

1. S. Bernard, et al., “Autism: A Novel Form of Mercury Poisoning,” Medical Hypothesis 56,
no. 4  (2001): 462–471.

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