Canaries In a Mine: Oregon's Epidemic of Autistic Children

Brainstorm Northwest ^ | May 2003 | Yvonne Buchanan

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Canaries in the Mine
Oregon's Epidemic of Autistic Children
Yvonne Buchanan
March, 2003

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They've been called canaries in the mine: children in record numbers whose lab tests show toxic levels of mercury and lead, reduced immune function, high bacteria levels. Their behavioral symptoms: a drug-like state, deficient speech and social skills, and often self-injury, odd sensory reactions to light, sound, textures. Their diagnosis: autism spectrum disorder. Their legacy: a 20-fold increase in autism rates in the U.S. over the past 15 years, from one in 10,000 school age children to one in 500. 

Oregon's rate? Twice that: 1:250.

Rates for boys (who experience autism at more than a 4:1 ratio over girls) can be significantly worse: one in 86 by some estimates. In contrast to "classic autism," where a child is born affected (ala Dustin Hoffman in "Rain Man"), in the "new autism," often called regressive autism, a child will develop normally for a period of time, usually until somewhere between 18 months and two years, then the child regresses, losing language, distancing himself from others, drawing inward. 
 

My son has autism. Try these words on your tongue; see how they taste. If you live in Oregon and have a male child under the age of three, your odds may be as high as one in 86 that this statement is true. Or substitute daughter, grandchild, nephew, niece, neighbor's child, friend's child. If you don't know anyone who has a young child with autism, you will soon. Autism rates are skyrocketing, and no one seems to know why.

My son has autism. My husband and I, residents of Northeast Portland, had two perfect sons: Max in 1998 and Sam in 1999. Both developed normally, but in May 2002, at the age of two and a half, Sam was diagnosed with autism spectrum disorder (ASD), a devastating affliction with wide-ranging impairments across social, verbal, behavioral and sensory areas. Some autistic children self-injure, banging their heads against floors, walls and bed rails. Others withdraw from even beloved family members. Others, like Sam, still hug, laugh and tease but lose language, fixate on objects, shun all but the closest family members, and become unable to understand simple instructions.

Extensive environmental testing has been conducted to determine the cause of the recent astonishing rate increases: all inconclusive. What is known is that the recent increase is not due to better diagnosis. A study just completed in California, the state with the longest history of tracking autism, found that the numbers were all too real, but offered no explanation for them.

Setting aside the emotional and social ramifications for a moment, this surge in autism may cripple Oregon's limited special education budget. A typical child with autism will require $2 million in special services before he reaches the age of 21--specialized services that by law he must receive from Oregon public schools.

I used to believe that autism was genetic, untreatable, that it was a mental disorder, and that children were either born with it or they weren't. I thought if my Portland pediatrician (a well-known and highly regarded family doctor) wasn't concerned, I didn't need to be. I was wrong. In contrast to classic autism, which occurs at birth and appears to be genetic, it is regressive autism that is credited for the recent epidemic. 

Regressive autism is insidious because it catches parents unaware. Sam hit all the major milestones right on target. He sat up at five months, crawled at seven months, and began walking at 10 months. At 12 months he could say around 20 words, among them: ball, star, Mom, Dad. He could pantomime to "Twinkle, Twinkle, Little Star," opening and closing his hands to "Twinkle," pointing toward the sky, and forming a rather misshaped diamond with his fingers. He could give "high-fives" and wave and say "bye-bye."

When Sam was 19 months old, our family took a trip to the U.K., my husband's birthplace. While he gave his grandfather in Northern Ireland "high-fives" when asked, his granddad and friends in England noted that he didn't talk much anymore. We had noticed this too, but attributed it to his ever-present pacifier. Sam often had the whole thing in his mouth, closing his lips around it. When our pediatrician saw this at Sam's 18-month checkup, he said, "Take that thing away." We thought, "Right. You try living with him without a pacifier." Sam was always putting things in his mouth: rocks, pushpins, film canisters. One day at a playground, he lowered his mouth to a mud puddle before I could stop him. The pacifier was a great alternative as far as we were concerned. And Sam seemed to really need it. Often he would put two or even three in his mouth at one time. He began chewing through them, and at nearly every trip to the grocery store we had to replenish our pacifier supply. With a pacifier constantly in his 
mouth it was no surprise to us that he wasn't talking.

What we didn't realize at the time was that these behaviors were symptomatic of regressive autism. Sam had reduced oral sensitivity: he mouthed objects constantly in order to know where his mouth was. 

Another common symptom of autism that Sam exhibited (although we didn't recognize it as such at the time) is obsessive/compulsive tendencies. Autistic individuals often resist change, fixating on patterns, objects or specific routes to and from the grocery store. When a deviation occurs, they are unable to incorporate it. Their ordered world has been turned upside down. They are lost. 

Sam liked to sweep all his toys into a large "nest" on the floor, and then roll around in them. At times, his rolling seemed almost frantic. Other than rolling on his toys, he did not play with them, preferring objects instead. He would fixate on a particular object for days or even weeks, and carry it around with him, even to bed. One week it was my wire whisk, another, my turkey baster. One day he grabbed two large yams from the pantry. I got him ready for his walk in the stroller and he wouldn't let go of the yams, so I let him carry them. When he fell asleep in the stroller, I took the yams away and put them in the basket underneath. An hour later when he woke he looked for them and became increasingly agitated until I returned them.

Children with autism often need increased stimulation in order to "feel" their bodies in space. This need can manifest itself in spinning, toe walking, rocking, the need for firm pressure, or even self-mutilation (such as head banging). Sam had habits of spinning and of looking at objects out of the sides of his eyes. Until the diagnosis, we just thought of these things as part of Sam's unique personality. 

Some of Sam's behaviors were more disturbing, however. He had no concept of danger, and we couldn't let the boys play in the front yard because Sam would constantly run for the street. One day while talking to my neighbor in her front yard, my attention was diverted for perhaps three seconds. When I looked back for Sam, he was running straight down our driveway toward the road. A car was approaching, driving too fast, and the car's view of our driveway and Sam was blocked by a parked pickup truck. The car and Sam were on a direct collision course. I found myself running through quicksand while my neighbor let out a scream that would make the director of a horror film proud. The scream stopped Sam just long enough for me to scoop him up. The driver of the car sped on, oblivious.

Because regressive autism occurs after a period of normal development, because families are often in denial, and because most pediatricians have not been trained to look for autism or even to know what to look for, many children aren't diagnosed until they enter preschool and the disparity between them and their peers becomes obvious. If there is an earlier diagnosis, it's often out of sheer luck. One Oregon family, for instance, learned of their child's autism while dining at a restaurant. Someone at the table next to theirs timidly asked, "Is your child autistic?" "No," said the parents. "Why do you ask?" "Because he is lining up all of the silverware and glasses on the table in neat rows. It's an autistic trait." The family sought and received the diagnosis soon after.

We learned of Sam's condition by accident. When Sam was 28 months old, a woman in one of my graduate classes at Portland State University mentioned that she had a son with autism. I asked her what first clued her in on her son's condition. She said, "Well, he lost words. Children don't usually lose words." It was as if a terrible light had just been turned on. We had taken Sam's pacifier away two months earlier, but he still wasn't talking. And there was something else: Sam wasn't giving "high-fives" anymore. When I got home that night, I went to Sam's baby journal and began flipping through the pages. The last time I'd noted any new words, Sam had been 16 months old. One year earlier. It was too late that night to call our pediatrician, so I got on the Internet and began sifting through sites related to autism. I was most interested in what other parents had to say about their children's behaviors. Every time I would read about a behavior Sam didn't have, I would feel a surge of hope. 
But gradually the evidence mounted. Too many of these children sounded just like Sam. The feeling of dread I'd been pushing away for several months came in and sat down beside me.

When I brought Sam to our pediatrician that week, I voiced my fears: I told our doctor that I thought Sam might be autistic. During the appointment, Sam was in a good mood, smiling at me, looking in the mirror and giggling while standing on the exam table. The doctor said, "He looks fine to me, and he's obviously bonded to you. Sam's young. A lot of children don't talk until later. My own daughter, for instance..." I told him about Sam losing words, about the object fixation, the mud puddle, the toy nesting. "It doesn't worry me," he said, "but just to make you feel better, why don't you see a speech pathologist." 

The speech pathologist that we saw hinted at but did not give the diagnosis of autism; that could only be done by a developmental or behavioral pediatrician. It took a full month before we could get an appointment. I spent that time learning all I could about autism. I bought and read several books on the subject; I joined a couple of news groups, and spent so many nights searching the Internet and sending and answering e-mail that I began to feel like some sort of cyber vampire. When the month was up, the behavioral pediatrician confirmed what I already knew: Sam had autism spectrum disorder. While he was high functioning, she described this as a life long disorder, one that meant significant language, social and behavioral deficits. I was shattered, shaken, but not surprised. My husband, Jim, however, who had been unable to accompany me, wasn't even sure the appointment was necessary. Like many parents of autistic children, he was immersed in the false comfort of denial. I knew he was at home waiting, 
expecting that I would return and tell him that I had been wrong, that my fears were unfounded. That our family had not just been changed forever. Four months earlier, Jim had had an unexpected triple bypass. I went home and broke his heart all over again. 

Before Sam and I left the clinic, the doctor had handed me a list of local resources. The first two names were child psychologists. By then I knew our answers lay elsewhere. Through my research, I learned of and started Sam on a diet that seems to have a remarkable effect on autistic children. Many of these children have difficulty processing gluten, the protein in many cereal grains; and casein, the protein in dairy. Within three days of taking Sam off of these foods, he started talking again. We were at the duck pond at Laurelhurst Park in Northeast Portland and Sam was sitting in his stroller staring out at the water. "Guk," he said. It took me a moment to realize what had happened. "Yes, Sam!" I said, excitedly, kissing his cheek, "That's a duck!" I tried desperately to get him to say it again. He didn't, but later he saw a dog and said "Gog." They were just one-word utterances, poorly pronounced, but after more than a year without words, we were overjoyed. He began to pick up new words every day. 

There were other improvements as well. Because of scheduling difficulties at the speech clinic, ten days passed between Sam's first and second visits. During that time, we had taken Sam off of gluten and casein. The speech pathologist couldn't believe the difference. "He's more alert. He's attending to me, giving me eye contact. He's less anxious. What on earth did you do?" I told her about the diet. She said, "Keep it up."

Another promising method for helping autistic children is intensive behavioral intervention. Children with autism have a tendency to escape into their own world. Behavioral intervention snaps them out of this by requiring them to attend to the directions of a therapist to receive highly motivating rewards (toys, bits of favorite foods, tickling games, etc.). To be effective, the therapy must be done regularly and often: between 20 and 40 hours a week. 

One month after his diagnosis, we started Sam on 20 hours a week of applied behavior analysis (ABA). After initial resistance (he threw up on his therapist), Sam was soon following simple directions, matching and then labeling picture cards. Six months later, he had learned and could identify his upper and lower case letters, including their phonetic pronunciation, could correctly label more than 200 nouns, colors, shapes and the numbers one through 50. He could ask us for juice, a cookie, and even, "Want Mommy." 

Even though no gene has ever been identified as the "autism" gene, for those outside the autism community, it is tempting to believe in a genetic basis. As the reasoning goes, "If there is no autism in my family, there never will be." But neither my husband nor I had ever had a family member with autism. And there has never been an incident of a genetically attributable epidemic. If the cause of regressive autism were genetic, we wouldn't be seeing the rates we're seeing. 

There is something else about this new breed of autistic children and it may hint at a cause and possible cure: these children nearly always have toxic levels of mercury and lead, and they often have rampant yeast levels, chronic bowel dysfunction, reduced immunity and high concentrations of intestinal bacteria. Because they are seen by some as symbols of how toxic our environment has become, they have been dubbed "canaries in the mine," tiny omens of the decline of the human race. 

Where the toxins come from is a subject of much debate. Many parents believe that a preservative, thimerosol, put in many childhood vaccinations over the past decade, is to blame. Thimerosol is 49 percent mercury. When children are given several vaccinations at once (a common practice), this mercury can overload their systems. Certain children may be more susceptible to mercury and unable to flush it out. Those with suppressed immune systems or a family history of immune disease may be especially at risk (hence a genetic susceptibility, but not, as is commonly believed, a genetic cause). Also, children who have been exposed to broad spectrum antibiotics or who have a cold or infection at the time they receive multiple vaccinations may be particularly vulnerable. Those who believe in the mercury/autism connection point to the fact that so many autistic children have high levels of mercury, and to the startling similarity between the symptoms of mercury poisoning and autism.

In 1999, the American Academy of Pediatrics and the U.S. Public Health Service recommended that thimerosol be removed from childhood vaccines, but no recall was ever done, so vaccines containing thimerosol may still wait in warehouses in vials destined for pediatric clinics and hospitals. In addition, the joint recommendation asked only for thimerosol to be removed "as soon as thimerosol-free replacements are available." This took two years in some cases, and some pharmaceutical companies have yet to produce thimerosol-free vaccines. Thimerosol is still added to many flu vaccines. 

Even without the mercury, however, many parents claim that the MMR vaccine (three vaccines given simultaneously), the sheer number of childhood immunizations (22 today compared to eight a decade ago) and the younger and younger ages at which the vaccines are administered may be responsible for their children's autism.

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[TrebleRebel]

It might be worthwhile to note that Reyes syndrome, many times, results in behavior that falls into the autism spectrum, but recently was not classified as autism but as MR. Just a comment...

[Behind Liberal Lines]

Interesting to note her first children were normal. I'd be interested in reviewing other variables, such as her--and her spouse's--ages when the children were born. Is the autistic child a "late in life" child? What percentage of all autisitic children are late in life children? It might be nothing, however...

[Bogey78O]

'a drug-like state, deficient speech and social skills'

I could understand why this would be a problem. With this happening the need for Ritalin will plummet.

[GOPJ]

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[goody2shooz]

My nephew was born in Portland, Oregon in 1990 to parents who were both drug addicts. His father was 41 years old and mother 37 years old at the time of his birth. He is normal, of average intelligence, though a bit tall for his age.

I do not personally know of anyone who has an autistic child in the area we live within - Longview, Washington. (This city is located 50 miles down the Columbia River from Portland, Oregon.)

I'm sure autism in this community exists but I seriously doubt, as this authors maintains, that autism here occurs at epidemic levels.

[Quietly]

The drug-like state could very well be, as it was in my sons, the opiate effect of gluten and casein in the diet.

Her son reacting so quickly to the change in diet shows that the major culprit was casein (dairy), which flushes out of the system within days and can produce a dramatic result within those days. The removal of gluten (wheat, rye, barley, etc.), the culprit in my sons' cases, can take months, even up to a year, to produce results, and can cause other health problems as well, and is extemely harder to weed out of the diet. It takes a whole lot more patience and diligence to wait for results in the removal of gluten.

It's extremely important, however, that whether casein or gluten is the primary culprit, that *BOTH* be removed from the child's diet. That is because, deprived of the primary "high", the child will turn to the other even more than the first, seeking a "fix." The diet isn't the one and only answer, but "tough love" in the diet, while extremely hard for a year or two, and contrary to a parent's nature, can in so very many cases lead to the wonderment of an autistic child going UP instead of down.

An autistic child spiraling down is unlikely to recover, but continues down, as did my older son. One heading upward, even a low-functioning one, as in our case with my younger son, is able to keep going upward. One place to start, and stay, is the gluten and casein free diet. No autistic person should ever be allowed to eat gluten or casein. For a start.

[Valpal1]

I live in a small town of 1200 people and can name 4 with this disorder, and stories incredibly similar.

I stopped vaccinating my children as infants and also do not do multiple vaccinations.

I think the number of shots given babies is out of control. It is not always medically in the best interest of the child, but of the medical industry.

[merry10]

I want to say that this sounds like an EXTREME case of autism. There are many, many people who are diagnosed as autistic who are very high functioning. For all interested in this topic, please look up Oliver Sacks on Amazon and get his book "The Man who Mistook His Wife for a Hat" or some such title. THis would be the collection of biographies of "different" people. One doctor is a masterful surgeon who has tourette's and tics through the day, but when he is in the OR, he is awesome. There are many children being diagnosed with autism who should not be and that is why the high number. How do I know? My daugther at 4, was profoundly deaf which I knew, but she would not "attend" had poor eye contact and didnt like to be touched (yet the teacher said she was affectionate). The doctor, who knew nothing of deaf children, dx'ed her as pervasive developmental disorder. Many years later, this diagnose is not substantiated by any number of child psychologists. Since autism is a spectrum disorder, a person can have hyperlexia, tourette's, Aspergers...and be labeled "autistic" and the average person on the street might not know. I think autism, in some cases, is becomign as overdiagnosed as ADD/ADHD.

[George W. Bush]

Bad vaccines? Processed foods?

It is startling when you realize just how rare these disorders once were. Now, there's no end to them. I don't think it's just a dietary matter though.

[CharlotteVRWC]

This is exactly what my sister and her husband are going through with their son. Gluten free diet is helping some
(they notice their son worsens when he eats certain foods not in the diet plan).

[LadyDoc]

HMM. since mercury was taken out of vaccine three years ago, if this was the cause, the cases would have disappeard. they didn't.

If MMR was the cause, the cases would have skyrocketed in 1970 and stayed steady. they didn't.

IF autism was due to drug use of parents, the rate would increase slowly starting in the 1970s and gradually increase. IT did. But other things increasing is pollution in the groundwater, and more drugging of kids by teachers who diagnose kids in schools.

funny, I don't see much autism. Pure autism, that is. WHat I do see is retarded children with pervasive developmental disorder. But their parents don't want the kids callled "retarded" so they call them "autistic". Since the movie "rain man" this is a politically correct diagnosis. And since I worked in the "good old days" at an institution for the retarded, I can diagnose this. Lots of the kids I worked with were retarded with some autistic symptoms, but only a few were autistic. But in the 1970's they started to close institutions and keep the kids at home. Voila: Autism epidemic.

Ironically, lead is a cause of retardation. WE've been testing for twenty years.

[Museum Twenty]

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[afraidfortherepublic]

My daughter needs to find out about services and schools and programs for autistic children in the Albany, NY and suburban area. Her family needs to relocated there from northern NJ within the year and needs to find a good program for her son.

There are many different ways of teaching these kids, and some work better than others with specific kids. IMHO anything would be better than the rigid education he has been receiving in NJ. She had to sue the school district to get speech therapy for him, and he has improved by leaps and bounds since that started, but his school days are spent mostly in frustration and tears.

Any contacts and suggestions would be appreciated.

[afraidfortherepublic]

My daughter needs to find out about services and schools and programs for autistic children in the Albany, NY and suburban area. Her family needs to relocated there from northern NJ within the year and needs to find a good program for her son.

There are many different ways of teaching these kids, and some work better than others with specific kids. IMHO anything would be better than the rigid education he has been receiving in NJ. She had to sue the school district to get speech therapy for him, and he has improved by leaps and bounds since that started, but his school days are spent mostly in frustration and tears.

Any contacts and suggestions would be appreciated.

[afraidfortherepublic]

I should point out that my grandson is definitely autistic, although he has some limited speech. He loves music and can sing better than he can talk. He knows his letters and can spell and recognize simple words, but his school sees no point in trying to teach him to read.

His autism presents in the sideways glance, shyness, repetitive and compulsive behavior, sleeplessness, nonresponsiveness. He just turned 8 and is large for is age.

[afraidfortherepublic]

I should also point out that he does NOT seem retarded because he can figure out any lock and he copies behaviors from the covers of his videos and DVDs and from the programs too.

He carries around the covers of his videos and DVDs and insists on taking them to bed. I've seen him take his toys and set up a "scene", copying the picture off of the front of one of his favorites. Sometimes he finds pieces of clothing to put on himself in order to put himself into the scene with his toys, etc. You can tell that he is thinking inside that beautiful head, but communication is very difficult.