“I knew that my life was meant for one purpose only: to find the treatments, protocols, and experts who would bring healing to my child and return her to me again. There was no obstacle that would stop me.”
The McGlynn: The words above and the story that follows is the story of many parents with autistic children and that of my son, his beautiful wife and their autistic twin boys. I am on this journey with them and am honored to be.
(“The first case of autism was diagnosed in California in 1943, 12 years after thimersol (mercury) appeared in childhood vaccines and three years after the use of pesticides in farming became routine in the U.S. The number grew to 6 in 10,000 by 1955. Today, the Center for Disease Control in Washington confirms that 1 in 150 births nationwide is autistic, roughly 30,000 new cases per year in the US today. In the State of California the number is 1 in 94. True numbers for the autism birthrate in the rest of the world is unquantified, though it is estimated the number is in the millions, as the medical community fails to diagnose until it’s too late for early intervention. Autism’s current rate quadruples every four years. It’s showing no signs of plateau, and has long ago eclipsed childhood cancers, cerebral palsy, downs syndrome, mental retardation and other childhood disorders combined, in prevalence. Autism is a world epidemic that no one can fully explain, and it’s shrouded in political secrecy. Experts call autism “the fire at the door”, an epidemic that can no longer be ignored.”)
Autism is a civil rights crisis of the most grievous order
The Huffington PostJuly 28, 2009
My daughter was diagnosed with autism several times. The first time was by her first preschool teachers, who told me they were not qualified to diagnose, but that I should seek professional diagnosis for a syndrome they had seen many times in other children over the years. The second time was by a UCLA specialist named Dr. Alessia di Paolo Gottleib, at the office of Dr. Jay Gordon in Santa Monica. I looked at Dr. Gottleib after she had spent an hour on the floor playing with Lila, wanting a sign that the teachers had been mistaken. Her face was stony. I said “What do you think?” Her face broke a little with a grim resignation. “Lila has autism”, she stated. My daughter jumped and whirled before us as the silence took over in my head.
I asked nothing about what I could do for Lila that afternoon. Dr. Gottleib told me she would send a written report as I stumbled from the office, struck numb and destroyed by grief.
The third diagnosis came from a doctor of psychology at the local Regional Center, who also pronounced “autism” quite openly after half an hour with Lila. This was about three weeks after the time with Dr. Gottleib, and my despair had leaked a pin-size hole where I could finally formulate words about my daughter’s situation. During my midnight and early dawn pillaging of the internet I had discovered the gluten and casein free diet and had learned a little about what Dr. Rimland was purveying for our children from The Autism Research Institute in San Diego. I mentioned the diet to the Regional Center doctor. She shook her head sadly and reported it was mean and predatory for people to spread such information, when parents getting this diagnosis are so vulnerable. She told me plainly that there is no treatment for autism, the diet is considered a farce, and that anyone telling me different was a quack to be avoided.
Again I was spun by the words from the visit with the Regional Center psychologist as we stumbled home. As a single parent I was processing everything happening to my daughter alone, and I vacillated between questioning my sanity and feeling a determination inside that something could be done to help Lila. Something about pushing her diagnosis under a rug and resigning myself to never seeing her again, never knowing my daughter who was once totally neurologically intact and healthy again, was ringing impossible for me.
That night and for many nights thereafter I did not sleep. This went on for several weeks, but at the beginning, within the first few nights, I found a woman named Mary Romaniec on the internet who claimed in a magazine article, that her son had been totally recovered from autism. Within a day of reading this article a friend of mine called me. I must have fallen in too familiar with the despair that had settled in, she expressed an uncommonly serious concern for my well-being after hearing my voice on the phone. She also told me she had a friend in Orange County whose son had autism, and she gave me that woman’s number. I remember that day as a milestone in the life of my child. I called that woman, and we talked for hours, like we had known each other for years. Her son had been diagnosed four years prior, and she had a DAN (Defeat Autism Now) doctor, the product of Dr. Rimland’s work. There were doctors peppered throughout the United States who believed autism is treatable, that gains could be made in the lives of these once healthy, now deeply compromised, children. None of the doctors or specialists we had seen had told me anything about this; the party line was firmly in place that autism could not be treated.
This mother’s son had not recovered from autism. She and her physician husband (who incidentally ran interference between her and the world after the diagnosis had happened, a luxury I found myself deeply jealous of) had enlisted a DAN doctor named Robert Sears, Jr. to treat their son’s autism. Her boy had improved a great deal, had gotten language back after a period of time on “the diet” still took copious amounts of supplements, but he was not recovered. She explained to me that she had finally reached a place of acceptance about her son’s condition never going away, and had the experience of raising a neuro-typical child with her daughter, born before their first child had been diagnosed. Part of me wondered if I would ever have that experience again.
Something so powerful, so undeniable, took me over after that talk. I had evidence of a child who had recovered, according to his mother Mary Romaniec. I had further evidence that a child could improve with treatment, from the mother in Orange County. In that moment I decided, irrevocably, that my child would recover. I knew that my life was meant for one purpose only: to find the treatments, protocols, and experts who would bring healing to my child and return her to me again. There was no obstacle that would stop me.
Notice, dear friends, that this dawning of realization came to me surreptitiously, through the Autism Underground, a place filled with pioneering parents and doctors willing to take professional risks to save our children. It sounds dark and forbidden and mysterious, as the medical establishment may actually want it to sound, to scare parents away from seeking treatment, at any cost. But as autism parents, even in the age where autism pervades our population at a rate 10,000 times what is was in 1985, we remain in the position of having to find help for our children through this underground.
I put Lila on the gluten and casein free diet (another story of heroism we autism parents undertake universally) and took her to see Dr. Sears after over a month of waiting to get off his waiting list. The cost of that consult was my first staggering blow, and I sold photography equipment and used our rent money to pay for it. Photography at that time was my livelihood, so I was selling my work materials to pay for medical treatment. You may or may not know that autism is legally excluded from medical insurance coverage in the United States (in every state except Arizona, whose legislature forced insurance companies to cover autism starting in 2008). So, yes, we autism parents second and third mortgage and sell our homes, sell our work equipment, ransom our time in second and third jobs and in some cases lose close to everything to procure medical and therapeutic intervention for our children. In the United States of America in the year 2009, our kids are excluded, because they have been diagnosed with a permanent disability, from getting medical care.
This is where we look up the meaning of discrimination in the dictionary and discover that autism is a civil rights crisis of the most grievous order. In addition to being barred from insurance coverage for treatment, our children are offered poor, sometimes totally bogus options for education and therapy through the bureaucratic agencies appointed to mete out provisions. They frequently get bound, and sometimes tortured by those same entities, during the school day — a pervasive problem in the US. They get this inferior provision because, again, they are disabled with a particular disorder called autism. One of the biggest shocks and disbeliefs that has leveled me in this journey with all the other autism parents I have stood beside in Sacramento and D.C., is that the discrimination goes unrecognized by those in power. They simply cannot or will not see the gross level of deprivation these children face because of their disability.
I followed in the footsteps of many parents who came before me into autism and I got Lila some medical treatments that traditional pediatricians told me were absurd. Aside from the odyssey into the world of Candida Albicans and Dublineisis, (aka yeast) that plagued Lila’s guts for two years without relent, Lila underwent IVIG (Intravenous Immunoglobulin) therapy like Mary Romaneic’s son. Mary was available to me throughout the process and we talked many an early morning about what was happening with Lila. The total cost for Lila’s 18 monthly treatments was $45,000, cash money. That money was raised by having a rock concert with friends from college times: Tenacious D. (I later found out there was a way for that doctor to have gotten insurance to cover it, but since that would have meant 50% less profit for him, he had us pay cash, another story for later.)
Of the dozens of medical interventions that Lila experienced, IVIG was the most dramatic. The first time we went to the clinic in Orange County, our wagon filled with toys and books for the all day affair on an intravenous drip, I saw a miracle. My daughter came back to me, fully recovered, verbal, without flapping and flailing, lucid: my Lila. The euphoria I experienced was other-worldly. I dropped to my knees and thanked God. I wept with tears of endless gratitude.
Lila was with me that time for about 5 days until I watched the immunoglobulin harvested from 1500 donors metabolize out of her system and she slowly slipped back in to autism again. This happened 17 more times. Twice she was rushed to the hospital after an infusion in the middle of the night with a 104+ fever that would not go down. About 15 infusions in, a heart murmur developed. (This was later resolved and was found benign when the infusions ended.)
Every month she would return to me calm and lucid, and slip away again. At the end of that year and a half, I contacted two family friends for more money to keep her going. She went three more times, and each time my disbelief that she was slipping away again became more crazy-making. I called a DAN doctor in Florida to beg advice. I called mothers in autism I knew, agonized. Finally, with no more funds, and no sign that the pattern would change, I had to let IVIG go and settle in to the daily life of a child who was fully trapped inside the vortex of autism. I was told that those brief reprieves from the immune component of Lila’s autism had given her brain a chance to weave itself together a bit. Some gains remained. Lila was more verbally competent than she had been before.
This is one simple tale of many in the galaxy of bio-medical treatments we seek to help our children regain their neurological and immunological faculties after autism has been visited upon us. The saga of testing, metal load, gastrointestinal plagues, sensory processing disorders, auto-immune disaster, all of it took the time and money to investigate possible cures. Today, five years after the diagnosis, we are fundraising for Lila’s Hbot (hyperbaric oxygen therapy) which costs thousands of dollars and won’t be provided for by insurance.
One of the flimsy claims the insurance lobby makes for excluding autism is that its treatments are not proven. However, there are now hundreds of children who have recovered through IVIG, diet and chelation therapy. Further, there are thousands of cancer patients who die each year despite having received costly “medically proven” chemical treatments. The difference? There are ten thousand times more children with autism than cancer, and ten of thousands more coming down the pike each year who the insurance lobby don’t want to treat. This is a tidal wave epidemic that government and society can longer ignore. As a champion in autism Rick Rollens often says: “Autism is the fire at the door.”
To the parents in Orange County in our film, who are living in the guest quarters of their parents home after spending every penny they had on the legal battle for their autistic daughter’s inclusion in school, to the parents who have lost their homes in foreclosure from the financial burden of giving their autistic child the chelation and oxygen therapy he needs to recover, to the mothers who don’t speak English, and who have dark skin, who never dare to challenge the powers because of their uncertainty in the pecking order: Our children are worth this struggle. Speak to the government, speak to the doctors, speak to the other hundreds of thousands of parents in this country alone who are being involuntarily inducted into the confraternity of autism as their children fall into the void: let them know that this underground struggle must be brought into the light. There is one goal as we enter into this age of autism, and that is to open the doors to access for this new generation to get medical intervention, to avoid vaccinations if necessary, to obtain the highest possible level of educational and therapeutic supports to regain their lives.
I had to come to terms with the fact that Lila is not going to recover from autism, about a year ago. She’s come up about 75% with the interventions she’s received, and she still continues to improve. She never stops working. Today she has a chance to go to school with typical peers, to enjoy sports activities and play dates, to excel academically to the best of her ability, because of this intensive work we have done. I wouldn’t take back a minute of the fight to get her where she is today.
We are here now to bring light to the autism underground, to make intervention open to all children affected by autism regardless of race, origin, or socio-economic status.
More information about the autism journey can be found at http://pilgrimsmovie.com, The Pilgrims: the journey to a new world for autism is narrated by Aidan Quinn and directed by Amanda Copeland. Produced by Aaron Ryder and Rodrigo Garcia and sponsored by Iberia Airlines of Spain. Email Amanda Copeland for more info on the film or for help and questions regarding intervention for your child with an autism diagnosis. Autism is reversible.
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The McGlynn
