The Price of Intervention: Autism Underground

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.

Comments

[RMankovitz]

I consider the autism underground a model for the future in finding treatments for a variety of chronic disorders, based on observation, anecdotes, correlation, research studies, risk/benefit analyses, and common sense. It is a grass roots community of patients and their advocates that has the intelligence, motivation, and self confidence to take responsibility for their health.

Below are some links that may be useful to those wanting more information, and represent only a small portion of the autism underground.

Here is a link to data collected over decades from more than 26,000 parents who completed questionnaires designed to rate behavioral effects of a variety of biomedical interventions. There are three sections: drugs, biomedical­/non-drug/­supplement­s, and special diets. Check out the data for GF/CF diets.

http://www.autism.com/treatable/form34qr.htm

Here is a link to a variety of diagnosis and assessment data and forms:

http://www.autism.com/treatable/forms.htm

Here is a link to hundreds of research studies, most published in peer-reviewed journals, that support protocols used in the underground:

http://autism.com/medical/research/biomedical/biomedical_onepage.htm

As to why the underground exists, the reason could not have been stated better than by Dr. Amy Tuteur, MD, in one of her comments below on the position of the mainstream medical community regarding autism:

"When they tell you there is no treatment, you can be sure that there is no treatment."

We'll see.

Roy Mankovitz, Director
http://www.MontecitoWellness.com

[SoFlaParent]

Thank you, Amanda, for sharing your experience!

[jened]

Continued success Amanda. I love the underground railroads!!!!!! Have been a part of one since the mid /80's to get kids who are learning disabled into better school placements (a lot of the time the schools just didn't want to admit the kid needed more intensive programming because it used to mean going to a privately funded school. Now, at least, there are more options here in Canada within the public system to address all these "learning disabilities." What I find fascinating is the fact that now I think I know the reason behind all these steadily increasing cases of learning disabilities and it's probably the same reason for the increase in autism, seizures etc.!! All those so called "scientists" who dismiss a link between this vaccination inundation and damaged kids are SICK. Truly, it is embarrassing the lack of decent safety studies on vaccination and they damned well know it!

[mikies]

The autism underground reveals that the conventional pediatric medical philosophy about "autism" is profoundly ignorant and abundantly arrogant. The autism epidemic going to put conventional medicine down the toilet where it belongs. I hope it takes the insurance, and pharmaceutical industry with it.

[HeidiN]

Just want to say that my children are all in regular school with no modifications now because I did not listen to the doctors who said it could not be done, and decided instead to listen to those who were doing it. Thank you all who are a part of the Autism Recovery Movement. Your sharing taught me how. I share back. You can find me all over the Net. I use the gf-cf, organic diet, plus treated for pathogens and toxins. I never used ABA, RDI, or anything like that. One I didn't start treatment on till he was 14. You can do this! Join the Underground!

[Jeff1728]

For those naysayers of DAN, please consider these questions:
1) How do you explain the recovered kids? Their existence is beyond dispute. If they were just going to “grow out of it”, where are all the recovered kids that stuck with traditional medicine?
2) Why do such a large percentage of the DAN doctors have autistic kids of their own? Do you believe they saw DAN as a quick way to make a buck off their kids rather than a successful alternative to the failure of their chosen profession?
Those that criticize DAN (by this I mean the general movement, not an individual doctor) have an agenda. Primarily it is pride; it is difficult for those who have made it their career to admit medical science has utterly failed these children. Another is financial; the money made from elimination diets and supplements pales in comparison to that of the drug-medical industry.
For the ASD parent naysayer there may be shame. It is extremely difficult (at first) to enforce a GFCF diet on a child that acts in an irrational manner. It is easier to give them the food they want rather than bear the brunt of the tantrum that is sure to come. Please understand the tantrum follows because they are addicted to the gluten/casein peptides, they are going through withdrawals. It will get better over time. Rather than criticize GFCF and DAN, please give it an honest trial with scrupulous adherence (no cheating or 90% compliance!).

[Jeff1728]

Thank you Amanda for sharing your story, there is hope for our kids.
My son had made an amazing recovery with bio-medical; he has lost his diagnosis and retains only some mild hyperness. We were incredibly fortunate, our son responded almost immediately to GFCF, nutrition, pro-biotics and methyl-B12 nasal spray. Our DAN doctor was a godsend, not a snake oil salesman leading us to bankruptcy.
In addition to our son’s neurological issues, our former pediatrician recommended treating our son’s constipation, eczema, nosebleeds, allergies and sleep disturbances with polyethylene glycol, cortisone, phynelphrine, cetirizine, and sleeping pills, respectively. If we had not found a DAN doctor, Ritalin was next on the hit list to help with his attention issues. Although well-meaning, it never occurred to her (or me at that time) that all these symptoms might be related to his poor cognitive skills and developmental delays. Now, of course, it is clear my son did not suffer from a deficiency of the laundry list of drugs listed above. All these symptoms were indicators of auto-immunity and general poor health. They cleared up on their own with good nutrition and avoidance of problematic foods.
DAN treats autism as a systemic inflammatory condition, not a collection of symptoms to be masked. It has changed our lives in ways I could not have imagined a year ago.

[Pam Long]

Proud to be part of the Autism Underground! My son, age 5, with vaccine induced regressive autism, is recovering thanks to DAN! treatment: yeast, chelation, supplements, IBD (gut disease), and recently HBOT. Non-verbal nearing age 3, he started talking within six weeks of a simple (five-dollar copay) anti-fungal medication. He's on track to start kindergarten next year. Keep hitting the lack of health insurance coverage for those who would seek treatment if covered or reimbursed. Bravo HuffPo!

moosemoms.­blogspot.c­om

[Peakdavid]

Amanda--

Thank you for capturing in words the emotional free fall when your child is given the autism diagnosis--one of those moments in life that a person will always remember in the most infinite detail.

But you took that pain and stuffed it into the furnace of your will to help Lila. I hope everyone reading understands and appreciates the courage, strength and endless love that you and other autism moms display.

Our story of recovery: Daniel was two when first diagnosed. Like you, I went to the internet to find anything that could help. I also will never forget the night I first read the word "thimerosal" on my computer screen. A few links later and the tunnel into the autism underground opened wide.

We found our way to probably the same Florida autism specialist you did. That doctor is one of the most courageous men I have ever known. He recovered our son over the course of six years--And let that be a lesson to others to never give up.

Like you, the financial costs have been absurd--but freeing in a way. You realize that *nothing* else matters but your child's recovery from their injuries.

We are now Rescue Angels for Generation Rescue. We speak to parent groups. Our son's former therapists invite parents of newly diagnosed children to observe him to show what is possible today.

Our love and blessings to all in the autism underground. It grows brighter by the day.

[Gatogorra]

I wanted to make an added comment about DAN doctors and insurance. You've got moxie to bring up this taboo. Some offices won't take Medicare because state insurance means state control and monitoring, but many can take private insurance and group policies and don't for the reason you mentioned. Disaster capitalism is a real problem in autism, though the biggest culprits are pharmaceutical companies and the dangerous, clinically useless drugs they manage to get attached to every bit of autism funding coming down the pike. At least DANs supply clinically effective services though I still find too many to be greedy. Part of the problem of being the "underground" is the tendency for the community to circle the wagons and censor inter-movement criticism. But the greedy are thriving in this black-market atmosphere and it's one issue that warrants letting the chips fly. Some doctors don't charge an arm and a leg and do great work. It's time for some DANs to suck it up and take the cut for welfare of children.

[Gatogorra]

Amanda,

Thanks for this. Here's another recovery testimony. Our twins were diagnosed in 2006. Our son had lost all speech and our daughter almost all speech between one and two after receiving 29 shots, most of them old stock with full mercury content. After the diagnosis, we did toxic metal testing and struck a vein of mercury in both kids that was shocking.
Two years of treatment later, every round of chelation that we've done for the children-- all carefully monitored and supplemented-- brought enormous leaps in development. for every staggering dump of metals. We'd watch it happen as the chelator hit their bloodstreams. In two weeks, our son potty trained himself completely, began to speak in sentences, and most surprising of all, stopped flapping his hands. Mitochondrial tests are coming back improved (impossible). Our daughter is reading at a third grade level and except for mild echolalia and some remaining emotional control issues, is coming closer to recovery. The doctors all warned us that chelation wasn't a miracle treatment for every child but our attitude was that the metals are carcinogenic and cause continued brain and organ damage-- why in hell would we leave them in there? We hope to be able to rent an HBOT tent and at least try IVIG at some point because all this "snake oil" has been the only hope and chance our children have been given.
What's a farce here are the pharma viral marketers hitting your post with their usual carping.

[Kim Stagliano - Huffpost Blogger]

Great post, Amanda. I'm running it on Age of Autism tomorrow. Tonight I'm celebrating a little girl named Aly, her Mom runs the National Autism Assoc., and this non-verbal child, doomed to her autism, is now speaking at age 11. The underground isn't so deep, parents simply have to be willing to scratch the surface.

KIM

[dugmaze]

My family is also proud to be residents in the Autism Underground. We face the same exact challenges and share the same exact hope. Our family motto is, "Keep moving forward!"(Meet the Robinson's of course) .

Thank you for writing such a great article.

[dugmaze]

Before my son was dx with Asperger's, I never knew one thing about autism. Why, because it didn't affect me. If that sounds selfish, it is.

That's the hardest lesson I've ever learned and my son taught it to me. Now I have like this enormous compassion for the needy and disabled. I see it everywhere I look. It was there the whole time.

I always tell people it's like buying a red truck. All of a sudden you see them everywhere.

[tonylurker]

Its heartbreaking to read about someone so abused by charlatans. Over $45,000 stolen by slick snake oil salesmen.

[dugmaze]

"The Chinese water snake (Enhydris chinensis) is the richest known source of EPA, the starting material the body uses to make the series 3 prostaglandins. These prostaglandins are the biochemical messengers which control some aspects of inflammation, rather like aspirin which also affects the prostaglandin system. Like essential fatty acids, EPA can be absorbed through the skin. Salmon oil, the next best source, contains 18% EPA. Rattlesnake oil contains 8.5% EPA."

Who ever said snake oil was bad for you probably died from a heart attack long ago.

[Amanda Copeland - Huffpost Blogger]

Dear Doug,

I super like the scientific approach to rebuttal. Be a fan. xoA

[gotmine9]

I suppose my story is not data, just ancedote too. But, for the record... My son was DX with autism (moderate to severe) at age 2.5. We did the occupational therapy, speech therapy, and play therapy. Nothing was having much of an effect. Major obvious symptoms: lack of eye contact, looking out of the corner of his eyes, lying on the floor, desire to be left alone, would 'play' for long stretches of time in his room, reluctance to get out of bed, no talking, no chattering. Completely regular routine. Not a picky eater, but preferred bread type stuff. Physical symptoms. constipation or loose bowels, lethargy,
We gave up dairy, within two days he started talking. Within weeks, chattering. We gave up wheat, he perked up within a month. We added cod liver oil, multivitamin, probiotics... he started looking head on, he talks all the time, asks and answers questions, loves to play with siblings, laughs and cries appropriately. He isn't cured, but in less than a year, he has returned mentally to our home. We will take him however he shows up. A welcomed and loved little boy.
Janet Johnson