He never played with his little sister, but rather could not tolerate her presence at all, and we couldn't leave the two of them alone because Julian could unpredictably become aggressive. He never expressed empathy for people or animals. He was not developing any capacity to play by himself. At times he seemed not to be able to think clearly, although he was very intelligent. No pretend play whatsoever. At school he was self-contained; he didn't explode, but made no friends and did not become actively involved in what was happening. He watched. He never waved hello -- he didn't seem to understand the point of greetings at all.
Our home life was, as you might guess, a disaster. My husband and I were deeply stressed out and my little daughter was routinely very frightened. We pretty much stayed home all the time because crowds made Julian so upset, but home was no place of calm no matter how much we worked at making it that way. On his third birthday I invited three kids and their moms over, people he had spent a lot of time with, and his reaction, when the first child arrived with a smile and a present, was to scream, "I HATE OTHER PEOPLE!" and run upstairs to his room and refuse to come back.
It's also true that Julian could be extremely interesting to talk to. He invented his own terminologies, he asked questions such as "Who invented language?" while fighting the carseat buckle, he could draw pictures from perspectives that were absolutely his own, unique and strange and lovely.
At that point I was a nearly total believer in mainstream medicine. He got every vaccination on time, he went to every well-visit, I gave him fluoride drops because the pediatrician told me to, round after round of antibiotics because the pediatrician told me to. I followed directions. But I had a child who was a wreck, and sick nearly all the time. When I suggested that something might be wrong, she reassured me that he was fine (a story many many parents of autistic kids can tell). Julian was my first child, my mother died before he was one, my other relatives thought he behaved badly because I was a crummy parent -- so I relied on the pediatrician's observations.
But then Julian fell off a cliff. He spiraled into a meltdown that wouldn't quit. Hours and hours of crying every day, violent, vicious hissing talk about how he wanted to chop me up into little pieces and put me in the trashcan, how he wanted to kill people, how he wanted to die. He was FOUR.
A playground mom wondered whether he had been exposed to something new -- she'd heard that kids could react badly to some common medicines, or even the inactive constituents of medicines. Yes, he'd just started Singulair, for asthma. In fact, he had started it about a week before the Epic Meltdown had begun. I got online, found the ingredients of Singulair, found the Feingold Diet. On the website I found a list of symptoms they claimed the diet could help, and was stunned to see a rather complete description of the trainwreck that was my son. All I had to do was get rid of most artificial ingredients and food that contained salicylates! That meant ditching chewable Singulair, which had aspartame in it, so I called Julian's pediatrician.
She scoffed at the Feingold Diet. No studies have shown that it helps. Then what can we do to help Julian? I asked. She had nothing to offer me, so I told her I was taking our chances with asthma and trying the diet. I'm telling this part of the story in such detail because it was the tipping point for me, and made everything that came after possible. As I said, until the Feingold Diet I believed in peer-reviewed journals as the only conduit of medical information. I believed in double-blind studies. And I thought that doctors were Scientists, people who took in all the new scientific information and mixed it with their clinical experience and came out knowing more than any layperson could hope to know.
I took all the artificial junk out of our diet (and was shocked, shocked to find how much there was -- dye and fake sugar in the kids' toothpaste, in their ibuprofen, it was all over the freaking house) and waited. Julian did not get obviously better. Then Valentine's Day came, and he came home from school with a big bag of candy, all Feingold-illegal.
"You're going to feel really bad if you eat that," I told him. He stared longingly at the candy, then handed it over to me. Not long after he came dancing into the room with an evil grin on his face and a red sucker in his hand. I repeated my warning. "It's your decision," I said. "But I think it will make you feel bad." He tore off the wrapper and sucked away as only a deprived four year old can.
Within fifteen minutes he was rolling around on the floor screaming, his ears were flaming red, his cheeks were flaming red, and he bounced around the house like a superball on speed. "Never doing this again!" he muttered as he sailed past. And sure enough, parents and teachers were amazed at the way a four year old would refuse treats, even if I wasn't there and no one was denying him. He refused them because he understood what they did to him.
I called up the pediatrician, certain she would be thrilled with my discovery. Surely her practice was filled with children who could benefit from the Feingold Diet! Uh, no. As far as she knew, studies said it didn't work, so it didn't work.
Call me naive, but this blew my mind. The pediatrician was someone I had bonded with, having been in her office a bazillion times since Julian was born. She was funny, she was warm, she was smart. Why was she not interested in what I was seeing? Wasn't clinical experience really important in developing good treatments? How did she explain the effect I was seeing if there was nothing to it?
I still have no answers to those questions. But after we had enough repeats of the experiment -- a diet infraction followed by a terrible reaction -- there was no doubt that Julian needed to be on that diet. It did not solve his problems, not even close; really, the best way to describe it is that he was even worse if he went off the diet, but not much better while on it. The interventions that would bring the WOW improvements came a little later. But having to find out about Feingold by myself, having to be willing to try it, and simply to pay attention to how Julian did while he was on it, by myself, against the advice of our doctor -- that was the start of my break with mainstream medicine, and what eventually made it possible for Julian to lose his autism diagnoses altogether.
The After.
One of my new online buddies suggested I read Karen DeFelice's Enzymes for Autism and Other Neurological Conditions, after which I immediately ordered enzymes from here and practically gave them to Julian before making it back to the house from the mailbox. Thanks to DeFelice's book, I was ready for a period of adjustment -- for about ten days, Julian was as big a mess as ever. Not any new terrible behaviors or symptoms, but Bad Day after Bad Day. I remember chasing him down the street as he ran away, naked and screaming, and that was more or less how the ten days went.
But on the 11th day! OH! Julian took my hand (something he never did) and led me out to the driveway. "Mama! Look at all the caterpillars out here!" I admired them. He tugged on my hand. "We've got to move them, Mama, or they're going to get run over when we park the car!" And he had tears spilling out of his eyes.
My son had never ever shown any empathy for any living thing in his life. I could. not. believe. what I was hearing. He spent a long time that day carefully gathering up caterpillars and moving them to safety. He spent hours (hours!) playing with his sister, which had never happened before. The next morning he came downstairs dressed for school -- never happened before. He was a completely different child. He was cheerful, cooperative with everyday chores, much less clumsy.
Of course I called the pediatrician right up (are you laughing at me yet?) thinking of how many children in her practice blah blah blah. Very polite, she was. Not interested. OK then, I thought. I'm on my own here.
But it was working. Instead of mostly bad days with some so-so days mixed in, he now had some really good ones. We could see the boy underneath the rage. We were filled with hope -- I thought Problem solved! which turned out to be the first of many times I thought that and turned out to be wrong. The path was long. The good days were spectacular, but there were not enough of them, and he seemed to be fogged in a lot, not able to think clearly. I kept searching.
I found my way here and did a lot of reading. By that point I was quite comfortable getting my information and treatment suggestions from sources such as other parents and scientists other than medical doctors, but I was a long way from believing that my son was mercury-poisoned. I spent months reading the posts there and trying to make sense of what they were doing and talking about. During those months I was trying different diets in an attempt to help Julian, I was treating bacteria and yeast in his gut that had terrible effects on his behavior -- but I was not succeeding. He would improve, and then regress, improve, and then regress. Never all the way back to the worst, but still, the improvements were not sticking nearly well enough.
I finally took him in to a developmental pediatrician for a diagnosis, hoping that maybe, just maybe they would have something to help him. Yes, he has Asperger's, they told me. SSRIs is all we have to offer you. Incurable. No cause known. Sorry. And by the way, don't listen to anybody on the internet -- there are a lot of nuts out there trying to take advantage of people like you.
Uh, right. Except so far, the only help I've gotten has been from the net.
In the fall of his kindergarten year, he was doing well enough in regular school but coming home every day and exploding in a gigantic meltdown. He started talking about wanting to kill himself. Yes, he had good days, but they weren't enough. He was still deeply miserable. The psychiatrist I took him to diagnosed him with PDD and suggested taking him out of school to reduce stress. So I homeschooled him for 6 months, and she was right, as long as we hung out in our pajamas most of the day and rarely left the house, he had fewer meltdowns -- but obviously pj's and never leaving the house wasn't a longterm solution, much as I think fondly about the hours and hours I spent reading aloud to him.
Eventually I had Julian's hair tested and decided to do a 10-round trial of chelation. Would I have been much happier if I'd had peer-reviewed, double-blind longterm studies to support this decision? You bet. But I didn't think Julian could wait that long, if those studies happened at all. I consulted Harrison's Principles of Internal Medicine, which confirmed that many of Julian's symptoms could indeed be those of mercury poisoning, and that the treatment for such poisoning was chelation therapy.
There are plenty of stories on the net of chelation gone bad, and I paid close attention to all of them. Julian was a smart, interesting kid, and I did not want to risk making things worse. I was nowhere near the point of feeling so desperate I would try anything. Determined, yes, but not desperate. I started reading every site where people were chelating, themselves or their children, and seeing what agents and protocols they used, and what the results were. I paid much more attention to poor outcomes (not "didn't help" but "made it worse") and crossed those possibilities off my list. I ended up using the safest, most conservative method I could find, described in this book. By that point I had hooked up with another pediatrician, whose daughter is autistic and who believed mercury had caused it, and this pediatrician said that Cutler's method was slow enough and mild enough that routine bloodwork wasn't necessary. Just what I wanted to hear.
Enzymes had allowed Julian to be at a playground without screaming at the other kids if they got anywhere near him, but he still, now at age 5, had no friends and never interacted with strange children. The very first weekend of chelation, I took him to a playground, settled on a bench with my magazine which I never got to read because Julian always required so much supervision. I was watching and heard him say to another boy, "Hey, my name's Julian, what's yours?" and run off to play. Together. I was crying behind my New Yorker. It's not possible to describe what it's like, to have learned expectations of someone that run so deep, and to have those expectations so happily shattered like that. It's extraordinary. The improvements since then have been slow, roller-coastery, yet steady: he started waving and saying hello to people without prompting....zip ahead to yesterday, when he answered the phone and chatted with a friend's mom, who then gushed to me about what lovely phone skills my eight year old has. She has no idea he was once autistic.
I'm going to fast-forward the rest of the story. Julian tested off the charts for Epstein-Barr virus (and some others), and I undertook many antiviral treatments such as enzymes, Valtrex, herbs and mushrooms, and low-dose naltrexone. All of these have been useful, some quite dramatically so. His cognitive function has cleared and for a few years he's been at a gifted school, doing very well academically and finally socially. I've continued to chelate him, slowly with small doses, for over three years. Last spring his autism diagnosis was removed by the psychiatrist who had diagnosed him with PDD three years earlier. She said she had never seen such a thing before, that he had no autistic features anymore at all. I gave her Cutler's books. :)
I want to be clear on a few things. I'm writing this diary only to offer help to those who want it. I am not attempting to tell anyone what to do, what to believe, how to be a parent. There is no single treatment that will help everyone with autism; it is complicated and has multiple causes. Anyone is welcome to email me if they want more details about treatment and where to find information and support.
I've hesitated to write this diary because who needs the flaming? But I started thinking about what Julian told me recently, about what we call The Bad Days. He told me he thought he was going to die, and that nobody was doing anything about it. So I'm writing this in his honor.
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