I didn't understand why this "lumberjack guy" was talking to all of us parents about trees, Lignasan, and ethylmercury. My daughter became sickly and regressed in skills after vaccines -- many with the vaccine mercury called thimerosal. Bacterial and viral infections were then to be constant unwanted parasites in her life as her immune system took a direct hit. Meg was diagnosed with autism shortly after and just recently has been diagnosed with an autoimmune disorder. Dan seemed to me to be on the wrong trail. It took me a while to connect the research and see that these clues Dan, along with Mark Blaxill, had been discussing and writing about for quite some time were the first "puzzle" pieces to autism.
So on that September night, I was grateful and excited to finally meet with Dan. He had contacted me as he was coming into town to visit his sister, and wanted to know if I could meet them for dinner. I had become entranced with those children of the 1930s, those first canaries in the debut of mercury-containing vaccines, who were subsequently declared to have "Autistic Disturbances of Affective Contact". I had e-mailed Dan and Mark over the years as they researched their book, The Age of Autism -- Mercury, Medicine and a Man-made Epidemic. My father had been an ophthalmologist and surgeon from the 1940s until the 1980s, and thimerosal, the ethylmercury preservative, was a heavily used medical product in that field, too, and in his own office.
Over dinner, after we shared stories and tears about my daughter's descent
into illness after vaccines and the ultimate reality of severe autism, Dan
pulled out a crisply, folded copy from his jacket pocket of Leo Kanner's 1971
paper, "Follow-up Study of Eleven Autistic Children Originally Reported in
Dan and his sister, Rosie, were both so encouraging as he invited me to make
history and help trace the roots of autism. It was an easy answer for me,
"Yes!" Dan and Mark had already found some of the "original
11," so I knew it could be done and I was ready for the challenge.
Finding the clues to how autism first appeared was like trying to hit a bullseye; slowly, we got closer and closer. To find the cause, we had to go back -- back to the start.
Dan also shared about GPI, General Paralysis of the Insane, a horrific neurodegenerative disease that had quite an interesting story. GPI historically was seen as the end result of the sexually transmitted disease syphilis, a sly spirochete bacteria very similar to the spirochete of Lyme bacteria today, sickening the brain and rendering its victim slowly insane, finally losing the ability to talk, walk or recognize anyone. Yet Dan and Mark's research showed that GPI only seemed to occur in syphilis patients who had been treated with mercury, a standard of care for centuries up to the era of antibiotics that arrived with penicillin in the 1940s. Like acrodynia in childhood, a disease connected to mercury in teething powders, GPI began to disappear when antibiotics took over as the treatment of choice. It seemed to be a possible interaction between the microbe of syphilis and mercury that sparked GPI. State mental institutions around the country had thousands of GPI patients, often for years, as their insanity whittled them down to a shell of their former selves.
I thanked Dan and Rosie for such a memorable and important night and, armed
with my Kanner follow-up study with the crease straight down the center, I went
home, ready to plunge into the past.
The very next day on the phone, I described to my wonderful Aunt Teddy the stories and history of the previous night's discussion. Her real name was Mary Elizabeth, but she had been affectionately called Teddy when in college in the 1940s, and it had stuck her whole life. That day though, I was puzzled by her quietness. Usually she was energized and supportive, so I wondered if she thought I had lost my mind in believing I could help find information about these children with such meager clues. I decided to ask her if something had upset her as the distance in her voice was so apparent.
Her words that morning will always be branded in my mind. She quietly said, "Your grandfather died of GPI." I could not believe what she had just said! "What! My grandfather? Died of GPI? " Yes, in a Veterans Administration mental institution. Teddy was my dad's younger sister. She was the last of the four siblings, but it was not her father that she was sharing about, it was my mother's father, whom I knew little about. Teddy was our sole historian of the family then, as my parents both had died in the early years of my own motherhood just as Meg's regression into the illness later to be called "autism" had begun. As I write this, I have tears: Teddy is also now gone.
But on that sunny September morning, my dear Teddy told me that this had always been a secret, one that my mother never shared with me or most others as she had such shame. It seems her father, my grandfather, had contracted syphilis years ago when a single, young man, either before or during WWI. He married in 1921, had my mom in 1924 and her brother came along in 1929, right in time for the Great Depression. Can you imagine this scenario? The whole country on its knees with the economy causing suicides from building ledges, and my grandfather beginning to slide into GPI ---- a regression into one of the most frightening illnesses ever. Since mercury was still a treatment into the 1930's for syphilis and decades before, it is very probable that he received treatments with it -- rubs, injections, pills -- prior to marriage.
His wife, my grandmother, may also have had treatments as a prevention, which was common for a spouse. ("His wife went through a similar intermittent and protracted treatment" -- Is General Paresis Dependent Upon Previous Treatment With Mercury? ) I was eventually to find out his son, my uncle, my mother's brother, was born with only one kidney, and was gravely ill as a child. Eerily, prenatal exposure to mercury can affect the fetal kidney.
I was forever changed by Mark and Dan's research as it became a very personal mission for me, and soon, I was to forge a bond with them as the three of us joined forces to search for the missing "Kanner 11," as I began to call them. I was to find "Barbara K." on November 5th, 2008, who turned out to be Bridget Muncie, daughter of Wendell Muncie, a Hopkins psychiatrist and friend to Leo Kanner.
Now I was determined to find Virginia, the eldest of the "Kanner
11" and the most mysterious regarding her health and symptoms. Because I
had a daughter who regressed after vaccination and had immune dysfunction ever
since, I felt a need to find Virginia as I thought something similar may had
happened to her, and no one ever knew. Kanner described each of his young
"11" in a narrative, often combining health and behaviors, but for
poor Virginia, there was no history of her birth or subsequent physical health.
We knew many of the others suffered with GI issues, repeated colds, viruses,
bacterial infections like Streptococcus, with one child's illness even being
called "postencephaltic behavior disorder" -- literally meaning some
sort of brain injury/inflammation then causing behavioral issues. Interesting,
but not one fact on Virginia, and that made me want to find her all the more.
And as I searched for Virginia, I also began the search for my grandfather. What had happened to each of them? Virginia was five-years-old when put into "a State Training School for retarded children." Her 1931 birth year would have made that 1936. The months turned into years as I combed the Internet looking for that poor lost child and my own grandfather, both most likely and unknowingly made medically and then mentally ill by man-made chemicals, mercury being the prime suspect, and then locked away.
Dan had sent me a copy of the American Psychiatric Association's 1941 members book, all 470 plus pages. We knew Virginia's father was another psychiatrist -- as he was in the company of three others so a total of four psychiatrists out of eleven children. Kind of a lot, actually, and a clue for those of us determined in seeking the how and why -- the true origins of these medical illnesses presenting as neuropsychiatric. With that APA list, I was matching last names to girls I could find with Virginia's birth date, September 13, 1931. I gathered Excel information into a lengthy "Shrink Table," an even lengthier "Virginia Table" and then many e-mails in between with Mark and Dan over the years.
There were untold false alarms and I feared that I would never find her --
until the 1940 census was opened up to the public in April of 2012.
I had been watching it grow, state by state, and was slowly spelling in different last names with the now indelible birth date - September 13, 1931. Nothing came up. No matches. I decided to try by region. We knew that Virginia had been in that State Training School since 1936 and then moved after that to the Henryton State Hospital years later. Henryton was in Maryland, like many of these connections to Hopkins and autism. It was something we had discussed, Mark, Dan and myself, that Virginia had more than likely been at Rosewood State Training School in Owings Mills, Maryland, in her early years, but we had been unable to find evidence showing that.
So on that particular evening, I was able to pinpoint that Maryland area in the 1940 Census and with that, I spotted "The Rosewood State Training School." Shivers and disbelief took over as the names went from a blurry nothing into the frozen handwriting of 1940. Virginia would have been age eight in the 1940 census, so I scanned down the list for the eight-year-olds. Although Rosewood was called a "School," it did not seem to be true as many of the "inmates," as they were called, were late teens and older adults, some in their 30s and 40s.
And then ---there she was. Vivian -- Vivian Murdock -- age 8 -- INMATE -- !
My heart skipped some beats as I realized that this was Virginia, this
was the first-born child in the medical literature with an autism diagnosis.
I knew it, almost to a certainty, because Leo Kanner had mistakenly called
"Virginia S." by another name, just once, in that 1971 follow-up.
"Five of our children have by now reached ages between 9 and 11 years. Except
for Vivian S., who has been dumped in a school for the feebleminded, they show
a very interesting course." And that is a big reason I needed to find her.
Like my own daughter, I felt something horrible had happened to Vivian. Was she
ill like the others and like my Meg, yet those around her only saw the
behaviors and missed the clues to what really ailed her -- an immune system
derailed by the chemicals of man?
I felt sorry for them all and my heart still breaks for this little girl
institutionalized for most of her life. Vivian died in 1987, her ashes put to
rest and her body finally free from autism and the years of being locked away.
Later that night, I found her Social Security death notice and it hit me that Vivian was not born on September 13, 1931 as Kanner had written. She was born in August. Kanner had misidentified birthdays on other children also we had learned. Why too, was there so little information on her health?
On a whim, I decided to try my luck on finding my grandfather that night as
fate seemed to have opened the door into the past. A few keys hit, then I
pressed "enter" and there he was, also an "INMATE" after
having been institutionalized for years. He died in November of 1944, sadly and
ironically, the same year antibiotics were starting to be used to rescue
patients from the throes of syphilis. No Mercury = No GPI, and the bonus of
microbes being killed by Penicillin. But it was too late; his fate had been
I was to later get a copy of his death certificate and it made it all so real. Dead at age 48, but the journey to that horrific death started years before, as the certificate stated that he had been in a Veterans hospital suffering from GPI for over 10 years. Both he and Vivian were institutionalized, states away from each other, yet connected by a secret and a shame that now needs to be exposed. Both innocent victims to a practice in which mercury caused a new disease by interacting with a microbe that man wanted to destroy but ultimately made worse - so much worse. I never knew my grandfather, but I hope he knows how sad and angry I am for all he went through, as well as the hardships and shame my mother and her family experienced.
Like acrodynia and autism, it may be that GPI and Autism also share a family vulnerability, "a sensitivity to Hg [mercury] that may be a heritable/genetic risk factor."
It is 2013 and we still have autism diagnoses steamrolling our country. The
newest rates recently reported -- 1:50! Mercury has been dismissed by many -
not due to the science, as there is so much evidence of its damaging effects on
the immune system, the increasingly recognized battlefield of autism:
-- Among all metals, mercury appears to have the most diverse effects on the immune system....mercury compounds may cause immunosuppression or immunostimulation, autoimmune reactions, or hypersensitivity.
-- More recently, scientists have observed associations between immune system disorders and exposure to both organic and inorganic (elemental) mercury
-- The continuing use of thimerosal in some vaccines and other products warrants further investigation of possible immunotoxic effects of this compound and its constituent ethylmercury.
Mercury has been dismissed these past years because in this era of manmade chemicals since the 1930s, some are saying it is not the only culprit that can harm. The attempts to dismiss it also tend to come from those protecting profits and not necessarily the health and welfare of those vulnerable to its danger. Should we dismiss it? I think not. As Dan and Mark showed, the rise of autism had much to do with mercury, and to dismiss it, seems very wrong.
These diseases of the immune system often seem to require more than just one factor. As in GPI, with its symbiotic relationship with the spirochete bacterium Treponema pallidum and mercury, is it possible other diseases can also develop from such a coupling of toxicity? Yes, it seems a very possible cause. So to dismiss mercury, in any of its forms, as a culprit in autism or any other neuropsychiatric or neurodegenerative disorder of the immune system, seems like an extremely bad idea.
There are now just three of "Kanner 11" children still lost to history. We will continue to look for them as they deserve to be rescued from the fate that identified them with "inborn autistic disturbances of affective contact," the behavioral diagnosis that Leo Kanner assigned to them. He missed many clues as to how they got that way. He missed their many immune issues and illnesses. He missed the point of time that put so many in or near a city where thimerosal vaccines were making their first appearance.
He also missed that most of the parents, in addition to being "highly intelligent", were involved with mercury, especially the newest form, ethylmercury. From that epicenter, autism then moved out like a tsunami, slow and rippling, until vaccines picked up the speed in the 1990s. And here we are. Although autism can be horrific and, for some of us, a dark shadow of GPI or acrodynia, we are at the crucial spot on the timeline in that we know it is a medical issue, and we will continue to push for treatments and prevention in that arena.
As for my Meg, her great-grandfather and our newfound Vivian, may this be the era when we can stop this madness. It was not these innocent "inmates" that were insane but Man who was insane, to think that all his chemicals could be innocent.
As I researched over the years, many songs played in the background. One
song that always haunts me in the Virginia journey was The Scientist.
It sums up the regression, the pain, the search for the answers, the hunt for
lost souls, and never, ever, giving up on the truth.
I was just guessing at numbers and figures
Pulling the puzzles apart
Questions of science, science and progress
Do not speak as loud as my heart
Nobody said it was easy
Oh, it's such a shame for us to part
Nobody said it was easy
No one ever said it would be so hard
I'm going back to the start
Teresa Conrick is Contributing Editor to Age of Autism. Thank you to Stuart Dahne Photography for permission to use the photo of Rosewood.