Love Bloomed After Socializing Was Learned
By THEA TRACHTENBERG and LINDSAY GOLDWERT
Feb. 25, 2009
David Hamrick, 29, and Lindsey Nebeker, 27, look like a typical couple in love, but what's not apparent is how hard they've worked to be together.
A couple finds a connection despite both having autism.
Hamrick and Nebeker live together in a Jackson, Miss., apartment, yet they have separate bedrooms, eat meals apart and spend most of their time focused on their own interests.
This unusual setup is how Hamrick and Nebeker, who are both autistic, make their relationship work.
About 1.5 million people in the United States have autism, with varying degrees of severity. Many people with autism struggle with the most basic social interactions, so finding love may seem like an impossibility.
Hamrick and Nebeker are high-functioning but, since childhood, both have found it difficult to make friends and even harder to keep them.
"All of her socialization had to be learned, usually by hard experience," said Nebeker's father, Gordon Nebeker.
Wednesday, February 25, 2009
Sunday, February 22, 2009
Babies Who Don't Respond To Their Names May Be At Risk For Autism Or Other Disorders
Year-old babies who do not respond when their name is called may be more likely to be diagnosed with an autism spectrum disorder or other developmental problem at age 2, making this simple test a potential early indicator for such conditions, according to a report in the April issue of Archives of Pediatrics & Adolescent Medicine, a theme issue on autism spectrum disorders.
Although as many as half of parents of children with autism report concerns about their child's developmental progress before the first birthday, the disorder is usually not diagnosed until age 3 or 4, according to background information in the article. "Earlier identification of autism offers the possibility of early intervention, which holds promise for improving outcomes in children with autism," the authors write. "This has motivated a growing body of research that aims to ascertain the earliest reliable indicators of autism."
Aparna S. Nadig, Ph.D., of the M.I.N.D. Institute, University of California Davis, Sacramento, and colleagues assessed the tendency of infants to respond when their names are called, which is "one of the most consistently documented behaviors in infancy that distinguishes children later diagnosed with autism from those with typical development or developmental delays," they write.
Infants whose older siblings had autism, and who were therefore at risk for autism, were compared with control infants who were not at high risk of developing the disorder. While each child sat at a table playing with a small toy, a researcher walked behind the child and called his or her name in a clear voice. If the child did not respond after 3 seconds, the name was called again up to twice. Fifty-five at-risk infants and 43 control infants completed this test at age 6 months, and 101 at-risk infants and 46 control infants were tested at age 12 months.
"At age 6 months, there was a non-significant trend for control infants to require a fewer number of calls to respond to name than infants at risk for autism," the authors write. "At age 12 months, 100 percent of the infants in the control group 'passed,' responding on the first or second name call, while 86 percent in the at-risk group did."
Forty-six at-risk infants and 25 control infants were followed up for two years; three-fourths of those who did not respond to their name at age 12 months were identified with developmental problems at age 2. A total of 89 percent of infants who did not have an autism spectrum disorder (including autism, Asperger's syndrome and related conditions all defined by deficits in language and social skills) and 94 percent of infants without any developmental delays at two years responded to their name on the first two calls at one year. Of the children who were later diagnosed with autism, half failed the test at one year, and of those who were identified as having any type of developmental delay, 39 percent failed the test.
"Thus, failure to respond to name at the well-child one-year check-up may be a useful indicator of children who would benefit from a more thorough developmental assessment," the authors write. "It will not, however, identify all children at risk for developmental problems."
"Since this task is easy to administer and score and takes few resources, it could be incorporated into well-child pediatric visits at 12 months of age," they conclude. "If a child fails to orient to name, particularly reliably over time, this child has a high likelihood of some type of developmental abnormality and should be referred for more frequent screening, comprehensive assessment and, if indicated, preventive early intervention."
Although as many as half of parents of children with autism report concerns about their child's developmental progress before the first birthday, the disorder is usually not diagnosed until age 3 or 4, according to background information in the article. "Earlier identification of autism offers the possibility of early intervention, which holds promise for improving outcomes in children with autism," the authors write. "This has motivated a growing body of research that aims to ascertain the earliest reliable indicators of autism."
Aparna S. Nadig, Ph.D., of the M.I.N.D. Institute, University of California Davis, Sacramento, and colleagues assessed the tendency of infants to respond when their names are called, which is "one of the most consistently documented behaviors in infancy that distinguishes children later diagnosed with autism from those with typical development or developmental delays," they write.
Infants whose older siblings had autism, and who were therefore at risk for autism, were compared with control infants who were not at high risk of developing the disorder. While each child sat at a table playing with a small toy, a researcher walked behind the child and called his or her name in a clear voice. If the child did not respond after 3 seconds, the name was called again up to twice. Fifty-five at-risk infants and 43 control infants completed this test at age 6 months, and 101 at-risk infants and 46 control infants were tested at age 12 months.
"At age 6 months, there was a non-significant trend for control infants to require a fewer number of calls to respond to name than infants at risk for autism," the authors write. "At age 12 months, 100 percent of the infants in the control group 'passed,' responding on the first or second name call, while 86 percent in the at-risk group did."
Forty-six at-risk infants and 25 control infants were followed up for two years; three-fourths of those who did not respond to their name at age 12 months were identified with developmental problems at age 2. A total of 89 percent of infants who did not have an autism spectrum disorder (including autism, Asperger's syndrome and related conditions all defined by deficits in language and social skills) and 94 percent of infants without any developmental delays at two years responded to their name on the first two calls at one year. Of the children who were later diagnosed with autism, half failed the test at one year, and of those who were identified as having any type of developmental delay, 39 percent failed the test.
"Thus, failure to respond to name at the well-child one-year check-up may be a useful indicator of children who would benefit from a more thorough developmental assessment," the authors write. "It will not, however, identify all children at risk for developmental problems."
"Since this task is easy to administer and score and takes few resources, it could be incorporated into well-child pediatric visits at 12 months of age," they conclude. "If a child fails to orient to name, particularly reliably over time, this child has a high likelihood of some type of developmental abnormality and should be referred for more frequent screening, comprehensive assessment and, if indicated, preventive early intervention."
Important Clue To Learning Deficit In Children With Autism
A study by researchers at the UC Davis M.I.N.D. Institute has discovered an important clue to why children with autism spectrum disorders have trouble imitating others: They spend less time looking at the faces of people who are modeling new skills.
The study was conducted using high-technology eye-tracking headgear and software that measures with precision the point at which a child is looking when learning a task. Researchers used an actor to demonstrate a task on a computer screen.
"We found that the children with autism focused on the demonstrator's action and looked at the demonstrator's face much less often than did typically developing children," said Giacomo Vivanti, a postdoctoral researcher at the M.I.N.D. Institute and the study's lead author. "The typically developing children may be looking at the demonstrator's face to check for information on what to do or how to respond appropriately, information that the children with autism are less inclined to seek. This is an important finding, because children with autism have difficulty learning from others. This might be one key to why that is so," Vivanti said.
Imitation plays an important role in how children learn, as well as in how people interact socially, said M.I.N.D. Institute researcher and senior study author Sally J. Rogers, who has been studying imitation impairment and autism for more than 20 years. "This is a trait we see as early as we can diagnose autism, and it's one of the traits that is present even in mildly impaired adults," Rogers said.
Impaired imitation leads to additional impairments in sharing emotions, pretend play, pragmatic communication and understanding the emotional states of others. For years, scientists thought that children with autism and related disorders had trouble with learning through imitation because they had poor motor skills or because they did not pay attention to the action being performed. The current study rules out these hypotheses.
"We now understand more about how this imitation deficit might be working and, after more study, we may actually be able to address it in a way that helps children with autism develop a more natural set of behaviors," said Rogers, a UC Davis professor of psychiatry and behavioral sciences.
In the current study, which was published online in June and will appear in print in November in the Journal of Experimental Child Psychology, 18 children aged 8 to 15 with high-functioning autism were carefully matched with a group of 13 typically developing children. While wearing special eye-tracking headgear, the children were shown video clips that ranged from seven to 19 seconds in length. After viewing each clip, the children performed the demonstrated action. The results confirm previous research that shows that children with autism have difficulty imitating tasks when compared to normally developing children. It also showed that children with autism paid just as much attention to the action being performed as the other children in the study, ruling out previous hypotheses about poor attention to the task.
"This finding is particularly important," Rogers said. "Now we can rule out this variable. We know these children are looking at the task."
Researchers also found that successful performance of a task by children with autism increases with the amount of time they study it but is not correlated with their basic motor skills, ruling out the possibility that it is a lack of motor ability causing the imitation effect.
Finally, the study showed that both groups of children shifted their attention from the action to the demonstrator's face, but the children with autism did this much less often.
According to Rogers, this finding suggests that imitation is not just about repeating an action, but understanding the reason for the action.
"That information is conveyed in our faces," she explained.
Rogers and Vivanti are continuing to try to understand how this difference in looking at faces affects more complex forms of learning and understanding.
"We are looking at how children look at emotions and intentions that are conveyed in a demonstrator's face and how looking at this information in faces or not looking at them may affect how they understand and imitate the observed actions," Vivanti said.
Based on these studies, Vivanti and Rogers hope to one day develop studies aimed at determining whether or not face-looking is an important part of the imitation process. "It could be that if people with autism could be better at reading emotion they might naturally start to imitate their models the way like other people do," Rogers said. "If it's about how people understand the information in a face, then it gives you a target for intervention."
The study was conducted using high-technology eye-tracking headgear and software that measures with precision the point at which a child is looking when learning a task. Researchers used an actor to demonstrate a task on a computer screen.
"We found that the children with autism focused on the demonstrator's action and looked at the demonstrator's face much less often than did typically developing children," said Giacomo Vivanti, a postdoctoral researcher at the M.I.N.D. Institute and the study's lead author. "The typically developing children may be looking at the demonstrator's face to check for information on what to do or how to respond appropriately, information that the children with autism are less inclined to seek. This is an important finding, because children with autism have difficulty learning from others. This might be one key to why that is so," Vivanti said.
Imitation plays an important role in how children learn, as well as in how people interact socially, said M.I.N.D. Institute researcher and senior study author Sally J. Rogers, who has been studying imitation impairment and autism for more than 20 years. "This is a trait we see as early as we can diagnose autism, and it's one of the traits that is present even in mildly impaired adults," Rogers said.
Impaired imitation leads to additional impairments in sharing emotions, pretend play, pragmatic communication and understanding the emotional states of others. For years, scientists thought that children with autism and related disorders had trouble with learning through imitation because they had poor motor skills or because they did not pay attention to the action being performed. The current study rules out these hypotheses.
"We now understand more about how this imitation deficit might be working and, after more study, we may actually be able to address it in a way that helps children with autism develop a more natural set of behaviors," said Rogers, a UC Davis professor of psychiatry and behavioral sciences.
In the current study, which was published online in June and will appear in print in November in the Journal of Experimental Child Psychology, 18 children aged 8 to 15 with high-functioning autism were carefully matched with a group of 13 typically developing children. While wearing special eye-tracking headgear, the children were shown video clips that ranged from seven to 19 seconds in length. After viewing each clip, the children performed the demonstrated action. The results confirm previous research that shows that children with autism have difficulty imitating tasks when compared to normally developing children. It also showed that children with autism paid just as much attention to the action being performed as the other children in the study, ruling out previous hypotheses about poor attention to the task.
"This finding is particularly important," Rogers said. "Now we can rule out this variable. We know these children are looking at the task."
Researchers also found that successful performance of a task by children with autism increases with the amount of time they study it but is not correlated with their basic motor skills, ruling out the possibility that it is a lack of motor ability causing the imitation effect.
Finally, the study showed that both groups of children shifted their attention from the action to the demonstrator's face, but the children with autism did this much less often.
According to Rogers, this finding suggests that imitation is not just about repeating an action, but understanding the reason for the action.
"That information is conveyed in our faces," she explained.
Rogers and Vivanti are continuing to try to understand how this difference in looking at faces affects more complex forms of learning and understanding.
"We are looking at how children look at emotions and intentions that are conveyed in a demonstrator's face and how looking at this information in faces or not looking at them may affect how they understand and imitate the observed actions," Vivanti said.
Based on these studies, Vivanti and Rogers hope to one day develop studies aimed at determining whether or not face-looking is an important part of the imitation process. "It could be that if people with autism could be better at reading emotion they might naturally start to imitate their models the way like other people do," Rogers said. "If it's about how people understand the information in a face, then it gives you a target for intervention."
Computer Game Helps Autistic Children Recognize Emotions
An interactive computer software program called FaceSay™ has been shown to improve the ability of children with autism spectrum disorders (ASD) to recognize faces, facial expressions and emotions, according to the results of a study conducted by psychologists at the University of Alabama at Birmingham (UAB). FaceSay™, created by Symbionica L.L.C., features interactive games that let children with ASD practice recognizing the facial expressions of an avatar, or software “puppet.” Specifically, the computer games teach the children where to look for facial cues such as an eye gaze or a facial expression.
The study found that the children with Asperger Syndrome who used the FaceSay™ program made significant improvements in their ability to read facial expressions. The children with autism made less improvement. Children in both the autism and Asperger groups, however, both improved their ability to recognize emotions.
Specifically, the children with autism who used FaceSay™ averaged a mean score of 14.8 on a facial recognition test. The control group averaged 12.8. The children with Asperger Syndrome scored much higher with an average score of 18.4 compared to 15.4 by the control group.
On an emotion recognition skills test, the children with autism who used FaceSay™ scored an average of 6.53. The control group’s average score was 5.2. The children with Asperger Syndrome had a mean test score of 8.7 compared with the control group score of 6.79. UAB doctoral student Maria Hopkins, Ph.D., and UAB associate professor of psychology Fred Biasini, Ph.D., conducted the study.
Autism spectrum disorder includes a range of developmental disorders such as autism, Asperger Syndrome and other pervasive developmental disorders. Children with ASD often avoid eye contact with others, which prevents them from perceiving and understanding the emotions of others. Many have problems remembering faces.
Hopkins and Biasini tested 25 children with autism and 24 children with Asperger Syndrome. The children ranged in age from 6 to 15, with an average age of 10 years. The group consisted of 44 boys and five girls. The computer training sessions were held twice a week for at least six weeks for an average of 20 minutes each session. The software featured three interactive games.
Psychologists at UAB plan to conduct more studies to assess the longtime effects of the FaceSay™ intervention.
The study’s results were presented recently at a meeting of the Association for Psychological Science.
The study found that the children with Asperger Syndrome who used the FaceSay™ program made significant improvements in their ability to read facial expressions. The children with autism made less improvement. Children in both the autism and Asperger groups, however, both improved their ability to recognize emotions.
Specifically, the children with autism who used FaceSay™ averaged a mean score of 14.8 on a facial recognition test. The control group averaged 12.8. The children with Asperger Syndrome scored much higher with an average score of 18.4 compared to 15.4 by the control group.
On an emotion recognition skills test, the children with autism who used FaceSay™ scored an average of 6.53. The control group’s average score was 5.2. The children with Asperger Syndrome had a mean test score of 8.7 compared with the control group score of 6.79. UAB doctoral student Maria Hopkins, Ph.D., and UAB associate professor of psychology Fred Biasini, Ph.D., conducted the study.
Autism spectrum disorder includes a range of developmental disorders such as autism, Asperger Syndrome and other pervasive developmental disorders. Children with ASD often avoid eye contact with others, which prevents them from perceiving and understanding the emotions of others. Many have problems remembering faces.
Hopkins and Biasini tested 25 children with autism and 24 children with Asperger Syndrome. The children ranged in age from 6 to 15, with an average age of 10 years. The group consisted of 44 boys and five girls. The computer training sessions were held twice a week for at least six weeks for an average of 20 minutes each session. The software featured three interactive games.
Psychologists at UAB plan to conduct more studies to assess the longtime effects of the FaceSay™ intervention.
The study’s results were presented recently at a meeting of the Association for Psychological Science.
Surprising Language Abilities In Children With Autism
What began as an informal presentation by a clinical linguist to a group of philosophers, has led to some surprising discoveries about the communicative language abilities of people with autism.
Several years back, Robert Stainton, now a philosophy professor at The University of Western Ontario, attended a presentation by his long-time friend Jessica de Villiers, a clinical linguist now at the University of British Columbia. The topic was Autism Spectrum Disorder (ASD). De Villiers explained that many individuals with ASD have significant difficulties with what linguists call "pragmatics." That is, people with ASD often have difficulty using language appropriately in social situations. They do not make appropriate use of context or knowledge of what it would be "reasonable to say." Most glaringly, many speakers with ASD have immense trouble understanding metaphor, irony, sarcasm, and what might be intimated or presumed, but not stated.
Drawing on his philosophical training, however, Stainton noticed less-than-obvious pragmatic abilities at work in de Villiers' examples, which were drawn from transcripts of conversations with 42 speakers with ASD -- abilities that had been missed by clinicians.
Thus began research to more clearly understand and define the conversational abilities and challenges of people with Autism Spectrum Disorder (ASD). Stainton and de Villiers' research, in collaboration with Peter Szatmari, a clinical psychiatrist at McMaster University, has shown that indeed, many individuals with ASD do have "a rich array of pragmatic abilities."
These researchers do not contest the well-established claim that people with ASD have difficulty with non-literal pragmatics, such as metaphors ("Juliet is the sun") or irony/sarcasm ("Boy, is that a good idea"). They have, however, found that many speakers with ASD do not show the same difficulty with literal pragmatics. An example is the phrase, "I took the subway north" from a transcript of a conversation with a research participant with ASD. The use of the word "the" could indicate there is only one subway in existence going north. "The subway" could also be referring to a subway car, a subway system or a subway tunnel. Taking account of the context and the listener's expectations, however, the individual using the phrase was able to convey the specific meaning he intended. That is, he used pragmatics effectively.
In short, Stainton and his colleagues produced surprising evidence to show that speakers with ASD use and understand pragmatics in cases of literal talk, as in the subway example.
Stainton, who is also Acting Associate Dean of Research in the Faculty of Arts and Humanities at Western, says, "It is especially gratifying and encouraging, because this is an Arts and Humanities contribution to clinical research. Without a philosophical perspective, this discovery might not have been made."
Related research allowed de Villiers and Szatmari to develop a rating scale of pragmatic abilities that can be used in the clinical assessment of people with ASD. Stainton says, "In the short term, their new tool will help identify where an individual fits on that spectrum. In the longer term, however, by making use of recent results in philosophy of language, it may contribute to our theoretical understanding of the boundary between knowledge of the meanings of words, and non-linguistic abilities -- specifically pragmatics."
Stainton believes that both clinicians who work with people with ASD, and language theorists who are interested in pragmatics for philosophical reasons, will find these results striking.
ASD affects approximately one in 165 people. The results of the research, conducted from a study of 42 children with autism and Asperger's Syndrome, has been published in the journal, Midwest Studies in Philosophy.
Several years back, Robert Stainton, now a philosophy professor at The University of Western Ontario, attended a presentation by his long-time friend Jessica de Villiers, a clinical linguist now at the University of British Columbia. The topic was Autism Spectrum Disorder (ASD). De Villiers explained that many individuals with ASD have significant difficulties with what linguists call "pragmatics." That is, people with ASD often have difficulty using language appropriately in social situations. They do not make appropriate use of context or knowledge of what it would be "reasonable to say." Most glaringly, many speakers with ASD have immense trouble understanding metaphor, irony, sarcasm, and what might be intimated or presumed, but not stated.
Drawing on his philosophical training, however, Stainton noticed less-than-obvious pragmatic abilities at work in de Villiers' examples, which were drawn from transcripts of conversations with 42 speakers with ASD -- abilities that had been missed by clinicians.
Thus began research to more clearly understand and define the conversational abilities and challenges of people with Autism Spectrum Disorder (ASD). Stainton and de Villiers' research, in collaboration with Peter Szatmari, a clinical psychiatrist at McMaster University, has shown that indeed, many individuals with ASD do have "a rich array of pragmatic abilities."
These researchers do not contest the well-established claim that people with ASD have difficulty with non-literal pragmatics, such as metaphors ("Juliet is the sun") or irony/sarcasm ("Boy, is that a good idea"). They have, however, found that many speakers with ASD do not show the same difficulty with literal pragmatics. An example is the phrase, "I took the subway north" from a transcript of a conversation with a research participant with ASD. The use of the word "the" could indicate there is only one subway in existence going north. "The subway" could also be referring to a subway car, a subway system or a subway tunnel. Taking account of the context and the listener's expectations, however, the individual using the phrase was able to convey the specific meaning he intended. That is, he used pragmatics effectively.
In short, Stainton and his colleagues produced surprising evidence to show that speakers with ASD use and understand pragmatics in cases of literal talk, as in the subway example.
Stainton, who is also Acting Associate Dean of Research in the Faculty of Arts and Humanities at Western, says, "It is especially gratifying and encouraging, because this is an Arts and Humanities contribution to clinical research. Without a philosophical perspective, this discovery might not have been made."
Related research allowed de Villiers and Szatmari to develop a rating scale of pragmatic abilities that can be used in the clinical assessment of people with ASD. Stainton says, "In the short term, their new tool will help identify where an individual fits on that spectrum. In the longer term, however, by making use of recent results in philosophy of language, it may contribute to our theoretical understanding of the boundary between knowledge of the meanings of words, and non-linguistic abilities -- specifically pragmatics."
Stainton believes that both clinicians who work with people with ASD, and language theorists who are interested in pragmatics for philosophical reasons, will find these results striking.
ASD affects approximately one in 165 people. The results of the research, conducted from a study of 42 children with autism and Asperger's Syndrome, has been published in the journal, Midwest Studies in Philosophy.
Saturday, February 21, 2009
Making headway - With work, 3-year-old showing improvement
RONAN - The little boy works so hard to put the 12-piece jigsaw puzzle together. Watching him concentrate as he twists the pieces round and round, searching for two that will interlock, borders on nerve-wracking.
It's his first time with this particular puzzle. His frustration grows incrementally with your anxiety, and occasionally he emits an “Ee-oh-ee-oh-ee-oh” sound that, his mother is sure, is his version of a string of cuss words that would make a sailor blush.
Slowly but surely the “Snow White” scene comes together, until there is just one piece left to complete the picture.
Please Install Flash
He's so close, so many times, and you want with all your heart to reach out and help him maneuver it that last fraction of an inch, so that it will fall into place for him.
But you don't.
You can't.
It's fine to help him, but he needs to learn to ask for help before you give it to him.
So until he does, the piece is twisted and pushed, twisted and pushed, the “Ee-oh-ee-oh-ee-oh” growing louder.
Suddenly, it's there, perfectly positioned. Decker Cote, age 3 1/2, shoves down on it and it locks in with the rest of the puzzle.
His eyes light up. Every adult in the room screams as if their underdog had just won the Super Bowl.
His teacher, Holly Porter, gives him a high five, then lifts the giggling boy and throws him into the air.
Back on the ground, Decker runs to his mother, Charlie Cote, who picks him up, nuzzles him, and tells him, “You're so smart. I'm so proud of you.”
In reality, it's only been six or seven minutes since Decker started the puzzle, but it seems like a lifetime.
And if you want to know why everyone is so excited about every little task that Decker Cote successfully completes, you need only to have known the little boy 10 short months ago.
Will and Charlie Cote's young son would foam at the mouth, bite himself until he drew blood, tear his hair out by the fistful, choke himself until he would vomit 20 times in the space of five minutes.
Decker Cote suffers from autism.
“It was so disturbing,” Charlie says. “All you could do was hold his arms by his side while he screamed, because you didn't know what else to do.”
Trips to the grocery store were a nightmare - the boy would end up underneath the shopping cart, his little fingers wrapped around the cart's bottom in a death grip, screaming bloody murder all the way. The family - which includes Decker's older brother Carter, now 6, and little sister Timber, who is 2 - quickly gave up on any outing that wasn't necessary.
The boy would sit in front of a kitchen cupboard and slam the door repeatedly for hours on end if you let him, finding some strange sort of comfort in the “bam” sound that echoed back at him endlessly.
Make him stop and he'd throw a skin-biting, hair-pulling, screaming and crying fit of monumental proportions.
The longest tantrum reached 17 consecutive hours.
“As a family, we fell off the face of the earth,” Charlie says. “We couldn't even go to dinner at my folks' house - any change in Decker's world turned ours upside-down for two to three days.”
It hadn't always been like this. For the first 12 months of his life there was nothing abnormal about Decker's behavior or development.
“He had speech as an infant,” Charlie says, “and just lost it. It was babbling, his own language, but it was there - ‘nana' for food; ‘hot,' he said it and knew what it meant, whether it was food he was eating or when I put him in the tub. He called his sister ‘Nice' because we were always saying, ‘Be nice to the baby.' ”
Just as important, Charlie says, Decker was “totally engaged” as an infant, smiling and giggling through games like “peek-a-boo.”
Then, over two to three months, it all went away, vanishing the way a setting sun leaves a world pitch black.
“He not only quit using the words he had developed, he didn't know what we were talking about when we used them,” Charlie says.
Most disturbing was the baby's refusal to look at his mother or father, or anyone else.
“You couldn't even force him to,” Charlie says. “If you tried to make him make eye contact, he'd cry like you'd slammed a door on his hand.”
It was a gradual slide. His parents were as confused as they were concerned.
“Will would say, ‘Is that right?' ” Charlie says. “Kids can be quirky, and we weren't sure. Timber was a new baby - was he just jealous? But it started getting to be too many things, there were too many signs.”
Decker Cote was disappearing into his own, strange, unknown world.
One of Will and Charlie's first thoughts was that Decker might be losing, or have lost, his hearing. It would explain why he wasn't talking anymore.
At the Confederated Salish and Kootenai Tribal Health Clinic, Eve Tolbert tested the not-yet-2-year-old.
“Decker was way out of hand, and I think she knew,” Charlie says of Tolbert. “I think it's the first time I heard anyone say the word ‘autism.' ”
A trip to the Child Development Center in Missoula for an autism spectrum disorder evaluation was next, but the Cotes discovered there was a long waiting list to get in.
“It's a bummer, because early intervention is critical,” Charlie says. “We were put on a call list. We were quite certain by this time it was autism, but I wanted to be wrong so bad you can't believe it. We weren't craving the diagnosis, but you have to have it before you can get services.”
It took six months to get in, but once there, Charlie says the team that diagnosed Decker with autism was exceptional. William Cook, the doctor who broke the news to Will and Charlie, was “just great,” she says. “There was nothing clinical about it. He was such a human being. You could tell it just broke his heart to tell us.”
One of the possible reasons?
“I've often thought, ‘What if Decker had been diagnosed with cancer?' ” Charlie says. “That would be terrible, too, but at least with a cancer diagnosis they can tell you what to do - you do this, you do that, you get sent to Seattle, there are actions you take. When the diagnosis is autism, there is no game plan. You've got to go find it.”
And so Charlie Cote did. In fact, she had started before the official diagnosis was delivered.
Her one rule: Avoid the Internet.
“You can get eaten up by all the information on the Internet,” she says. “Try this diet, use these biomedical treatments, try this drug or that injection. I wanted to find something that's been done for a while, and that works. I didn't want to experiment on him. It's my child.”
Her best source, Charlie says, was a book, “Facing Autism,” by Lynn Hamilton.
“All your homework done by a mom who's gone ahead of you,” she explains.
That helped lead her to the work of Dr. O. Ivar Lovaas, a UCLA professor with four decades invested in autism research. The Lovaas approach to Applied Behavior Analysis, Charlie says, is simple. It rewards and praises appropriate behavior in an autistic child and ignores irresponsible behavior.
If the child completes a task successfully - it can be as simple as placing a block in a bucket - they “get a big party,” Charlie says. “It can be licking a sucker, or getting tickled, or playing with a toy they like, or throwing them into the air and swinging them around.”
If they don't do it, there's no punishment - but there's no party, either.
It does sound simple, and at its core, it is.
But each child with autism is different, and there is a lot of work involved in getting a tortured child like Decker from where he was last March, to where he is today.
Their first step was to contact Steven Michalski, founder and director of the Redwood Learning Center in Sandy, Utah.
Michalski had studied under Lovaas at UCLA.
Twenty-eight-year-old Will Cote and his father operate two Mission Valley businesses, a welding and fabricating shop and Cross Diamond Boom, a crane service. Will and Charlie also have a small cow-and-calf operation on their ranch west of Ronan, plus run the ranch next door that belonged to Charlie's parents after her father passed away.
To several full-time jobs the Cotes added another: Recovering their son from the grips of autism.
There are arguments about whether autism is a disease or a disorder, and arguments about how to treat it, but the Cotes chose the route with 40 years to back it up.
Will remodeled his workshop on the ranch into a classroom for Decker. Charlie hit up dozens of local businesses for help, organized a fundraising spaghetti feed that drew so many people from the community - 600 - that both Ronan's grocery stores were emptied of their hamburger and sauce before the night was over, and lined up a group of friends, family and neighbors who would become Decker's teachers.
Michalski traveled from Utah to conduct a three-day workshop to teach the teachers how to teach Decker.
Most of the group was stunned when Michalski began working with the boy, then 2 1/2, for the first time, and they saw what they were getting into.
“Decker did everything but pull a knife on Steve,” Holly Porter says. “He was biting and hitting and scratching and kicking, and the tantrum seemed to last for days.”
“To Will and I it was nothing we hadn't seen every day for a year,” Charlie says. “All the teachers were crying, but to us that day was a launching pad for getting our son back.”
Michalski delivered an important message that day to Decker's new battalion of teachers, which include Porter, Marge Coursen, RaLynn Brown, Joanne Ploskunak, Jody Jones and Lisa Jones-Park.
“Don't react to his behavior, stay neutral,” Coursen says. “Keep him in his chair working - if he's doing his ring-stacker, physically take his hand and make him keep putting rings on it.”
“He showed us all that we're battling autism, not Decker,” Charlie says.
The therapy demands a lot from the 3-year-old.
It lasts eight hours a day. A pair of three-hour sessions in the home-built classroom on the ranch are interrupted at midday by two hours in town at Ronan's Head Start program, which Charlie says has gone “above and beyond” to help.
Even when school's out, it's not, not really.
The same sort of exercises and routines from his daytime teachers continue on into the evenings, on weekends, every day of the year with his parents.
Charlie and Will had Decker into the classroom on Christmas Day, New Year's Eve.
“The autism doesn't take a day off,” Charlie explains, “so neither can we.”
But the progress has been stunning to them. Charlie says 40 percent to 50 percent of children diagnosed with autism, if in the right range on the spectrum chart and treated early enough with ABA, can recover huge amounts of their speech and social skills.
Consider the child jigsaw puzzles. When they first started working the puzzles, the puzzles were whole save for one piece that the teachers would remove and hand to Decker.
That's all he could handle just a few short months ago. One piece, and it took him as long to figure it out as it does to do an entire puzzle from scratch now.
The battery of teachers painstakingly charts how he did on each exercise, and how much time it took.
Once a week, they gather with Charlie for a two-hour session to plan out the coming week.
Michalski flies up from Utah every few weeks to read over the charts, work with Decker and offer directions for his therapy. His services cost $150 an hour plus expenses, and $75 for phone or e-mail communication from Utah.
But Charlie says Michalski never charges for conversations that last just a few minutes, or simple e-mails. He's fine with sleeping in the bunkhouse next door on her mother's property, and many of his flights have been covered by folks in the Mission Valley who have donated frequent-flier miles.
The Cotes' goal is for Decker to recover enough that they can enroll him in a regular kindergarten class by the time he's 6.
Their son's autism has been “quite possibly the biggest challenge we will face in our lifetimes,” Charlie and Will say.
But the puzzle is coming together.
Day by day, Decker Cote is emerging from a terrifying world not of his making.
Piece by piece, Will and Charlie are getting their son back.
Measure requires insurers to provide coverage for autism
By VINCE DEVLIN of the Missoulian
RONAN - Will and Charlie Cote thrust their plight - and that of their 3 1/2-year-old son, Decker - into the public eye last week, when they traveled to Helena to testify in favor of Senate Bill 234.
Sponsored by Sen. Kim Gillan, D-Billings, “Brandon's Bill” would require insurance companies to provide coverage for the diagnosis and treatment of autism.
Eight states - Arizona, Florida, Louisiana, Illinois, Indiana, Pennsylvania, South Carolina and Texas - have enacted autism insurance reform legislation, and Montana is one of several more considering similar bills during the current session.
According to Autism Speaks, a national organization that backs the legislation, most states do not require private insurance companies to cover even essential autism treatments and services.
“In the absence of coverage, families often pay as much as they can out of pocket for services that can cost upward of $50,000 per year,” Autism Speaks says. “In the process, many risk their homes and the educations of their unaffected children - essentially mortgaging their entire futures.”
To Charlie Cote, it makes no more sense than it would be to allow health insurance companies to refuse to pay for chemotherapy for a person covered by insurance and diagnosed with cancer.
“We're trying to save our son's life,” she says of the aggressive Applied Behavior Analysis approach they've elected to take with Decker (see accompanying story).
It costs the Cotes $4,000 to $5,000 a month.
“Decker,” she told the committee, “has begun a beautiful transformation. A year ago, he was in discontent 90 percent of his day. He would tantrum for hours on end. Decker went 18 months without sleeping a night through. When he was sleepless he was injuring himself by pulling his own hair out, biting through his own skin, choking and gagging himself to vomit multiple times in a matter of minutes. He lost all speech and all eye contact (and) withdrew into this unpredictable world.”
“These are not moments pulled from our darkest days,” Charlie went on. “This was every day. Our family changed. We became a family with autism.”
ABA, one of the treatments SB 234 would require insurance companies to cover, has made such a huge difference in the life of Decker and his family, Charlie says, that it's hard to put into words.
The Cotes are lucky, she says, to have family and friends and neighbors - really, the entire community of Ronan - to lean on for help in paying for and delivering to Decker the care he needs.
“When we were in Helena,” she says, “I couldn't help thinking what it would be like for a 19-year-old single mom to try to deal with what we're dealing with.”
SB 234 would require insurance companies to cover diagnosis, rehabilitative, pharmacy, psychiatric, psychological and therapeutic care and ABA treatments, up to $50,000 a year.
“We are in favor (of SB 234) not only for the benefit of our own son, but for every child that follows behind him,” Cote told legislators. “Unfortunately, there will be many. Let us as a state embrace them, and give them the treatment that they need and deserve.”
It's his first time with this particular puzzle. His frustration grows incrementally with your anxiety, and occasionally he emits an “Ee-oh-ee-oh-ee-oh” sound that, his mother is sure, is his version of a string of cuss words that would make a sailor blush.
Slowly but surely the “Snow White” scene comes together, until there is just one piece left to complete the picture.
Please Install Flash
He's so close, so many times, and you want with all your heart to reach out and help him maneuver it that last fraction of an inch, so that it will fall into place for him.
But you don't.
You can't.
It's fine to help him, but he needs to learn to ask for help before you give it to him.
So until he does, the piece is twisted and pushed, twisted and pushed, the “Ee-oh-ee-oh-ee-oh” growing louder.
Suddenly, it's there, perfectly positioned. Decker Cote, age 3 1/2, shoves down on it and it locks in with the rest of the puzzle.
His eyes light up. Every adult in the room screams as if their underdog had just won the Super Bowl.
His teacher, Holly Porter, gives him a high five, then lifts the giggling boy and throws him into the air.
Back on the ground, Decker runs to his mother, Charlie Cote, who picks him up, nuzzles him, and tells him, “You're so smart. I'm so proud of you.”
In reality, it's only been six or seven minutes since Decker started the puzzle, but it seems like a lifetime.
And if you want to know why everyone is so excited about every little task that Decker Cote successfully completes, you need only to have known the little boy 10 short months ago.
Will and Charlie Cote's young son would foam at the mouth, bite himself until he drew blood, tear his hair out by the fistful, choke himself until he would vomit 20 times in the space of five minutes.
Decker Cote suffers from autism.
“It was so disturbing,” Charlie says. “All you could do was hold his arms by his side while he screamed, because you didn't know what else to do.”
Trips to the grocery store were a nightmare - the boy would end up underneath the shopping cart, his little fingers wrapped around the cart's bottom in a death grip, screaming bloody murder all the way. The family - which includes Decker's older brother Carter, now 6, and little sister Timber, who is 2 - quickly gave up on any outing that wasn't necessary.
The boy would sit in front of a kitchen cupboard and slam the door repeatedly for hours on end if you let him, finding some strange sort of comfort in the “bam” sound that echoed back at him endlessly.
Make him stop and he'd throw a skin-biting, hair-pulling, screaming and crying fit of monumental proportions.
The longest tantrum reached 17 consecutive hours.
“As a family, we fell off the face of the earth,” Charlie says. “We couldn't even go to dinner at my folks' house - any change in Decker's world turned ours upside-down for two to three days.”
It hadn't always been like this. For the first 12 months of his life there was nothing abnormal about Decker's behavior or development.
“He had speech as an infant,” Charlie says, “and just lost it. It was babbling, his own language, but it was there - ‘nana' for food; ‘hot,' he said it and knew what it meant, whether it was food he was eating or when I put him in the tub. He called his sister ‘Nice' because we were always saying, ‘Be nice to the baby.' ”
Just as important, Charlie says, Decker was “totally engaged” as an infant, smiling and giggling through games like “peek-a-boo.”
Then, over two to three months, it all went away, vanishing the way a setting sun leaves a world pitch black.
“He not only quit using the words he had developed, he didn't know what we were talking about when we used them,” Charlie says.
Most disturbing was the baby's refusal to look at his mother or father, or anyone else.
“You couldn't even force him to,” Charlie says. “If you tried to make him make eye contact, he'd cry like you'd slammed a door on his hand.”
It was a gradual slide. His parents were as confused as they were concerned.
“Will would say, ‘Is that right?' ” Charlie says. “Kids can be quirky, and we weren't sure. Timber was a new baby - was he just jealous? But it started getting to be too many things, there were too many signs.”
Decker Cote was disappearing into his own, strange, unknown world.
One of Will and Charlie's first thoughts was that Decker might be losing, or have lost, his hearing. It would explain why he wasn't talking anymore.
At the Confederated Salish and Kootenai Tribal Health Clinic, Eve Tolbert tested the not-yet-2-year-old.
“Decker was way out of hand, and I think she knew,” Charlie says of Tolbert. “I think it's the first time I heard anyone say the word ‘autism.' ”
A trip to the Child Development Center in Missoula for an autism spectrum disorder evaluation was next, but the Cotes discovered there was a long waiting list to get in.
“It's a bummer, because early intervention is critical,” Charlie says. “We were put on a call list. We were quite certain by this time it was autism, but I wanted to be wrong so bad you can't believe it. We weren't craving the diagnosis, but you have to have it before you can get services.”
It took six months to get in, but once there, Charlie says the team that diagnosed Decker with autism was exceptional. William Cook, the doctor who broke the news to Will and Charlie, was “just great,” she says. “There was nothing clinical about it. He was such a human being. You could tell it just broke his heart to tell us.”
One of the possible reasons?
“I've often thought, ‘What if Decker had been diagnosed with cancer?' ” Charlie says. “That would be terrible, too, but at least with a cancer diagnosis they can tell you what to do - you do this, you do that, you get sent to Seattle, there are actions you take. When the diagnosis is autism, there is no game plan. You've got to go find it.”
And so Charlie Cote did. In fact, she had started before the official diagnosis was delivered.
Her one rule: Avoid the Internet.
“You can get eaten up by all the information on the Internet,” she says. “Try this diet, use these biomedical treatments, try this drug or that injection. I wanted to find something that's been done for a while, and that works. I didn't want to experiment on him. It's my child.”
Her best source, Charlie says, was a book, “Facing Autism,” by Lynn Hamilton.
“All your homework done by a mom who's gone ahead of you,” she explains.
That helped lead her to the work of Dr. O. Ivar Lovaas, a UCLA professor with four decades invested in autism research. The Lovaas approach to Applied Behavior Analysis, Charlie says, is simple. It rewards and praises appropriate behavior in an autistic child and ignores irresponsible behavior.
If the child completes a task successfully - it can be as simple as placing a block in a bucket - they “get a big party,” Charlie says. “It can be licking a sucker, or getting tickled, or playing with a toy they like, or throwing them into the air and swinging them around.”
If they don't do it, there's no punishment - but there's no party, either.
It does sound simple, and at its core, it is.
But each child with autism is different, and there is a lot of work involved in getting a tortured child like Decker from where he was last March, to where he is today.
Their first step was to contact Steven Michalski, founder and director of the Redwood Learning Center in Sandy, Utah.
Michalski had studied under Lovaas at UCLA.
Twenty-eight-year-old Will Cote and his father operate two Mission Valley businesses, a welding and fabricating shop and Cross Diamond Boom, a crane service. Will and Charlie also have a small cow-and-calf operation on their ranch west of Ronan, plus run the ranch next door that belonged to Charlie's parents after her father passed away.
To several full-time jobs the Cotes added another: Recovering their son from the grips of autism.
There are arguments about whether autism is a disease or a disorder, and arguments about how to treat it, but the Cotes chose the route with 40 years to back it up.
Will remodeled his workshop on the ranch into a classroom for Decker. Charlie hit up dozens of local businesses for help, organized a fundraising spaghetti feed that drew so many people from the community - 600 - that both Ronan's grocery stores were emptied of their hamburger and sauce before the night was over, and lined up a group of friends, family and neighbors who would become Decker's teachers.
Michalski traveled from Utah to conduct a three-day workshop to teach the teachers how to teach Decker.
Most of the group was stunned when Michalski began working with the boy, then 2 1/2, for the first time, and they saw what they were getting into.
“Decker did everything but pull a knife on Steve,” Holly Porter says. “He was biting and hitting and scratching and kicking, and the tantrum seemed to last for days.”
“To Will and I it was nothing we hadn't seen every day for a year,” Charlie says. “All the teachers were crying, but to us that day was a launching pad for getting our son back.”
Michalski delivered an important message that day to Decker's new battalion of teachers, which include Porter, Marge Coursen, RaLynn Brown, Joanne Ploskunak, Jody Jones and Lisa Jones-Park.
“Don't react to his behavior, stay neutral,” Coursen says. “Keep him in his chair working - if he's doing his ring-stacker, physically take his hand and make him keep putting rings on it.”
“He showed us all that we're battling autism, not Decker,” Charlie says.
The therapy demands a lot from the 3-year-old.
It lasts eight hours a day. A pair of three-hour sessions in the home-built classroom on the ranch are interrupted at midday by two hours in town at Ronan's Head Start program, which Charlie says has gone “above and beyond” to help.
Even when school's out, it's not, not really.
The same sort of exercises and routines from his daytime teachers continue on into the evenings, on weekends, every day of the year with his parents.
Charlie and Will had Decker into the classroom on Christmas Day, New Year's Eve.
“The autism doesn't take a day off,” Charlie explains, “so neither can we.”
But the progress has been stunning to them. Charlie says 40 percent to 50 percent of children diagnosed with autism, if in the right range on the spectrum chart and treated early enough with ABA, can recover huge amounts of their speech and social skills.
Consider the child jigsaw puzzles. When they first started working the puzzles, the puzzles were whole save for one piece that the teachers would remove and hand to Decker.
That's all he could handle just a few short months ago. One piece, and it took him as long to figure it out as it does to do an entire puzzle from scratch now.
The battery of teachers painstakingly charts how he did on each exercise, and how much time it took.
Once a week, they gather with Charlie for a two-hour session to plan out the coming week.
Michalski flies up from Utah every few weeks to read over the charts, work with Decker and offer directions for his therapy. His services cost $150 an hour plus expenses, and $75 for phone or e-mail communication from Utah.
But Charlie says Michalski never charges for conversations that last just a few minutes, or simple e-mails. He's fine with sleeping in the bunkhouse next door on her mother's property, and many of his flights have been covered by folks in the Mission Valley who have donated frequent-flier miles.
The Cotes' goal is for Decker to recover enough that they can enroll him in a regular kindergarten class by the time he's 6.
Their son's autism has been “quite possibly the biggest challenge we will face in our lifetimes,” Charlie and Will say.
But the puzzle is coming together.
Day by day, Decker Cote is emerging from a terrifying world not of his making.
Piece by piece, Will and Charlie are getting their son back.
Measure requires insurers to provide coverage for autism
By VINCE DEVLIN of the Missoulian
RONAN - Will and Charlie Cote thrust their plight - and that of their 3 1/2-year-old son, Decker - into the public eye last week, when they traveled to Helena to testify in favor of Senate Bill 234.
Sponsored by Sen. Kim Gillan, D-Billings, “Brandon's Bill” would require insurance companies to provide coverage for the diagnosis and treatment of autism.
Eight states - Arizona, Florida, Louisiana, Illinois, Indiana, Pennsylvania, South Carolina and Texas - have enacted autism insurance reform legislation, and Montana is one of several more considering similar bills during the current session.
According to Autism Speaks, a national organization that backs the legislation, most states do not require private insurance companies to cover even essential autism treatments and services.
“In the absence of coverage, families often pay as much as they can out of pocket for services that can cost upward of $50,000 per year,” Autism Speaks says. “In the process, many risk their homes and the educations of their unaffected children - essentially mortgaging their entire futures.”
To Charlie Cote, it makes no more sense than it would be to allow health insurance companies to refuse to pay for chemotherapy for a person covered by insurance and diagnosed with cancer.
“We're trying to save our son's life,” she says of the aggressive Applied Behavior Analysis approach they've elected to take with Decker (see accompanying story).
It costs the Cotes $4,000 to $5,000 a month.
“Decker,” she told the committee, “has begun a beautiful transformation. A year ago, he was in discontent 90 percent of his day. He would tantrum for hours on end. Decker went 18 months without sleeping a night through. When he was sleepless he was injuring himself by pulling his own hair out, biting through his own skin, choking and gagging himself to vomit multiple times in a matter of minutes. He lost all speech and all eye contact (and) withdrew into this unpredictable world.”
“These are not moments pulled from our darkest days,” Charlie went on. “This was every day. Our family changed. We became a family with autism.”
ABA, one of the treatments SB 234 would require insurance companies to cover, has made such a huge difference in the life of Decker and his family, Charlie says, that it's hard to put into words.
The Cotes are lucky, she says, to have family and friends and neighbors - really, the entire community of Ronan - to lean on for help in paying for and delivering to Decker the care he needs.
“When we were in Helena,” she says, “I couldn't help thinking what it would be like for a 19-year-old single mom to try to deal with what we're dealing with.”
SB 234 would require insurance companies to cover diagnosis, rehabilitative, pharmacy, psychiatric, psychological and therapeutic care and ABA treatments, up to $50,000 a year.
“We are in favor (of SB 234) not only for the benefit of our own son, but for every child that follows behind him,” Cote told legislators. “Unfortunately, there will be many. Let us as a state embrace them, and give them the treatment that they need and deserve.”
Thursday, February 12, 2009
Vaccines don't cause autism, special court says
WASHINGTON – Vaccines aren't to blame for autism, a special federal court declared Thursday in a blow to thousands of families hoping to win compensation and to many more who are convinced of a connection.
The special masters who decided the case expressed sympathy for the families, some of whom have made emotional pleas describing their children's conditions, but the rulings were blunt: There's little if any evidence to support claims of a vaccine-autism link.
The evidence "is weak, contradictory and unpersuasive," concluded Special Master Denise Vowell. "Sadly, the petitioners in this litigation have been the victims of bad science conducted to support litigation rather than to advance medical and scientific understanding" of autism.
Science years ago reached the conclusion that there's no connection, but Thursday's rulings in a trio of cases still have far-reaching implications — offering reassurance to parents scared about vaccinating their babies because of a small but vocal anti-vaccine movement. Some vaccine-preventable diseases, including measles, are on the rise, and last fall a Minnesota baby who hadn't been vaccinated against meningitis died of that disease.
The special court represented a chance for vindication for families who blame vaccines for their children's autism. Known as "the people's court," the U.S. Court of Claims is different from many other courts: The families involved didn't have to prove the inoculations definitely caused the complex neurological disorder, just that they probably did.
More than 5,500 claims have been filed by families seeking compensation through the government's Vaccine Injury Compensation Program, and Thursday's rulings dealt with the first three test cases to settle which if any claims had merit. The first cases argued that a combination of the measles-mumps-rubella vaccine plus other shots triggered autism.
"I must decide this case not on sentiment but by analyzing the evidence," said Special Master George Hastings Jr., writing specifically about Michelle Cedillo of Yuma, Ariz., who is disabled with autism, inflammatory bowel disease and other disorders that her parents blame on a measles vaccine given at 15 months.
"Unfortunately, the Cedillos have been misled by physicians who are guilty, in my view, of gross medical misjudgment," Hastings concluded.
Attorneys for the families said they were disappointed and may appeal.
"There was certainly no scientific proof that vaccines caused autism, but that's not the standard; the standard is likelihood," said Kevin Conway of Boston who represented the Cedillos. "We thought our evidence was solid."
"Certainly those three families are discouraged with the ruling," added Tom Powers, a Portland, Ore., attorney overseeing all the claims. "It's a big step, it's a significant step but it's not the last step."
Indeed, the court's ruling will do little to change the minds of parents who believe vaccines have harmed their children, said the head of a consumer group that questions vaccine safety, the National Vaccine Information Center.
"I think it is a mistake to conclude that because these few test cases were denied compensation, that it's been decided vaccines don't play any role in regressive autism," said Barbara Loe Fisher, the center's president.
The court still must rule on additional cases that argue a different link — that vaccines that once carried the mercury-containing preservative thimerosal are to blame, if the mercury reached and damaged brain cells — and Powers said families making those claims remain hopeful. The court has given no timetable for a ruling.
But Thursday's rulings clearly gave great credence to numerous large studies that have looked for but not found any link between the measles vaccine, other vaccines and autism.
"Hopefully, the determination by the special masters will help reassure parents that vaccines do not cause autism," the Department of Health and Human Services said in a statement that pledged to continue research into possible causes and better treatments.
"It's a great day for science, it's a great day for America's children when the court rules in favor of science," said Dr. Paul Offit, an infectious disease expert at the Children's Hospital of Philadelphia and developer of a vaccine for rotavirus.
"A choice not to get a vaccine is not a risk-free choice," Offit added, pointing to recent outbreaks of vaccine-preventable diseases that authorities suspect are partly due to delayed or rejected vaccinations.
Autism is best known for impairing a child's ability to communicate and interact. Recent data suggest a 10-fold increase in autism rates over the past decade, although it's unclear how much of the surge reflects better diagnosis.
Worry about a vaccine link first arose in 1998 when a British physician, Dr. Andrew Wakefield, published a medical journal article linking a particular type of autism and bowel disease to the measles vaccine. The study was soon discredited, and British medical authorities now are investigating professional misconduct charges against Wakefield.
Then came questions about thimerosal, a preservative that manufacturers began removing from all vaccines given to infants in 2001. Today it is present only in certain formulations of the flu shot.
The special masters who decided the case expressed sympathy for the families, some of whom have made emotional pleas describing their children's conditions, but the rulings were blunt: There's little if any evidence to support claims of a vaccine-autism link.
The evidence "is weak, contradictory and unpersuasive," concluded Special Master Denise Vowell. "Sadly, the petitioners in this litigation have been the victims of bad science conducted to support litigation rather than to advance medical and scientific understanding" of autism.
Science years ago reached the conclusion that there's no connection, but Thursday's rulings in a trio of cases still have far-reaching implications — offering reassurance to parents scared about vaccinating their babies because of a small but vocal anti-vaccine movement. Some vaccine-preventable diseases, including measles, are on the rise, and last fall a Minnesota baby who hadn't been vaccinated against meningitis died of that disease.
The special court represented a chance for vindication for families who blame vaccines for their children's autism. Known as "the people's court," the U.S. Court of Claims is different from many other courts: The families involved didn't have to prove the inoculations definitely caused the complex neurological disorder, just that they probably did.
More than 5,500 claims have been filed by families seeking compensation through the government's Vaccine Injury Compensation Program, and Thursday's rulings dealt with the first three test cases to settle which if any claims had merit. The first cases argued that a combination of the measles-mumps-rubella vaccine plus other shots triggered autism.
"I must decide this case not on sentiment but by analyzing the evidence," said Special Master George Hastings Jr., writing specifically about Michelle Cedillo of Yuma, Ariz., who is disabled with autism, inflammatory bowel disease and other disorders that her parents blame on a measles vaccine given at 15 months.
"Unfortunately, the Cedillos have been misled by physicians who are guilty, in my view, of gross medical misjudgment," Hastings concluded.
Attorneys for the families said they were disappointed and may appeal.
"There was certainly no scientific proof that vaccines caused autism, but that's not the standard; the standard is likelihood," said Kevin Conway of Boston who represented the Cedillos. "We thought our evidence was solid."
"Certainly those three families are discouraged with the ruling," added Tom Powers, a Portland, Ore., attorney overseeing all the claims. "It's a big step, it's a significant step but it's not the last step."
Indeed, the court's ruling will do little to change the minds of parents who believe vaccines have harmed their children, said the head of a consumer group that questions vaccine safety, the National Vaccine Information Center.
"I think it is a mistake to conclude that because these few test cases were denied compensation, that it's been decided vaccines don't play any role in regressive autism," said Barbara Loe Fisher, the center's president.
The court still must rule on additional cases that argue a different link — that vaccines that once carried the mercury-containing preservative thimerosal are to blame, if the mercury reached and damaged brain cells — and Powers said families making those claims remain hopeful. The court has given no timetable for a ruling.
But Thursday's rulings clearly gave great credence to numerous large studies that have looked for but not found any link between the measles vaccine, other vaccines and autism.
"Hopefully, the determination by the special masters will help reassure parents that vaccines do not cause autism," the Department of Health and Human Services said in a statement that pledged to continue research into possible causes and better treatments.
"It's a great day for science, it's a great day for America's children when the court rules in favor of science," said Dr. Paul Offit, an infectious disease expert at the Children's Hospital of Philadelphia and developer of a vaccine for rotavirus.
"A choice not to get a vaccine is not a risk-free choice," Offit added, pointing to recent outbreaks of vaccine-preventable diseases that authorities suspect are partly due to delayed or rejected vaccinations.
Autism is best known for impairing a child's ability to communicate and interact. Recent data suggest a 10-fold increase in autism rates over the past decade, although it's unclear how much of the surge reflects better diagnosis.
Worry about a vaccine link first arose in 1998 when a British physician, Dr. Andrew Wakefield, published a medical journal article linking a particular type of autism and bowel disease to the measles vaccine. The study was soon discredited, and British medical authorities now are investigating professional misconduct charges against Wakefield.
Then came questions about thimerosal, a preservative that manufacturers began removing from all vaccines given to infants in 2001. Today it is present only in certain formulations of the flu shot.
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