Schafer Autism Report July 28-29, 2003

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Understanding the misunderstood; A behind-closed-doors look at life with autism shines an altogether different light on the condition

This is the kind of documentary people avoid. “Gracious, no,” they shout, stabbing frantically at the remote control lest they be adversely affected by so much as 30 seconds of hand-wringing earnestness on behalf of a misunderstood minority. But you should, seriously, give yourself a good kicking if you miss this because it’s great. It’s funny ha ha, funny peculiar, maddening, soothing, life-affirming, and defiant. The summer’s big hit for sure, and yes, it is actually about autism. The Jacksons are an odd bunch, as 14-year-old Luke puts it. Jacqui, a single mum, has seven children in all, and four of them, her sons, areall afflicted by some form of autism. Though maybe “afflicted” isn’t quite the right word. Luke says it’s a more of a “gift” and that “difference is cool”. But I’m in danger of making this sound schmaltzy, and it’s certainly not that.

Jacqui, who variously teaches, studies (a masters in forensic psychology), and writes, asserts that her life is “not some Greek tragedy”. Rather, her kids are “amazing”.

The film, which comprises Luke’s video diary and footage of life inside their Blackpool semi, is intended to show us what autism is like - for those on the outside and those on the inside.

Luke sometimes feels like he’s on a different planet. But he serves as interpreter for the seemingly bizarre behaviour of his brothers. Ben, the six-year-old who only learned to sit up and walk when he was five, wears green ear-muffs in bed to shut out noise and get a little comfort, Luke tells us. He admits that, at Ben’s age, he wore a balaclava all the time.

Nine-year-old Joe takes everything he can lay his hands on and stores it in his chaotic bedroom because “people like us like to collect things”. At the moment, his fixation is batteries. Jacqui, still cross after the incident where he gave her diamond necklace to his teacher, admits that, for someone like Joe, possessions don’t have importance, not even his own.

Ben and Joe don’t like making eye contact because, explains Luke, it’s “uncomfortable . . . like (other people’s) eyes are burning right into you”. The solution, he has discovered, is to look at people between their eyes, or look them in the mouth.

Mathew, 19, has dyslexia, and dyspraxia which makes him clumsy. Luke has Asperger’s syndrome, a form of autism, but is lucky to be highly functional. Not everyone with autism is like Luke, who is hugely clever, has already written two books, and finds it easier, much easier, to address a 500-strong crowd at a medical conference than have a normal, one-to-one conversation with someone at school.

“Joe’s reading’s really good,” he says at one point. He couldn’t read till he was seven; “then it clicked”; his teacher found him reading Shakespeare. His sisters, Rachel (“the opposite of me” - artistic, popular), Sarah (“popular, but in a quiet way”), and Anna (writes poetry and “there’s always someone phoning her at five o’clock in the morning”), tease his hair and give him advice on getting on with girls.

But for Luke, and more so for Ben and Joe, the world’s a funny place where noise and colours and smells swarm into your face and people behave meaninglessly. The etiquette of dating is about as bonkers as you can get; it’s even madder than a supermarket. “I’ll get used to it, as part of everyday life, I suppose,” he sighs.

Both Luke and Joe go to a mainstream school, where they get on OK but experience problems with communication and social interaction.

Luke’s been bullied at times, and called a geek and a freak. He was quite relieved when he was diagnosed; it suited his sense of order to have a name for it. But home is “where we can be ourselves”. Here, we see them gathered round the dinner table, everyone shouting and laughing. In the living-room, the girls disco- dance on the carpet while Luke stares at his computer and Ben puts his hands over his ears and frowns.

While the teenage girls slumber peacefully, Joe’s taken a can of shaving foam and emptied it in long, wiggly stripes all round the bathroom walls. Then he’s covered his head with hair wax, drawn a picture, and up-ended a jigsaw all over his bedroom floor. Ben, who sleeps with his mum because he’s still too helpless to cope alone, has wet the bed. Luke is confiding to his video camera that he cannot sleep, and Jacqui has decided to spend the rest of the night - it’s now 5am - sitting on the settee.

But that’s a low point. Later we visit the optician with Joe and Luke, and discover the difference red lenses can make to Joe’s dyslexia, and how blue lenses can restore Luke’s balance and stop the lights in school flickering all the time.

Two-thirds of children play truant because of difficulties with reading, the optician, a big, jolly man, tells Luke. School is “offensive to the system” when you can’t read, he says, and Luke nods wisely.

In the end, it’s a bit of a wrench to say goodbye, to leave them to their noisy, chaotic, colourful life together, doing tae kwon do as a family, making a mess and a racket, and laughing about it.

“I wouldn’t want it to be any different,” says Luke. And why would he? My Family and Autism, BBC2, Wednesday, 9pm.

Newsweek is doing a feature story on Autism pegged to Simon Baron-Cohen’s fascinating new book “The Essential Difference,” which portrays autism is a manifestation of the “extreme male” brain. We would like to photograph children with Autism for the lead.

Ideally: What we want is to find a set of fraternal twins, one boy one girl, where the boy has Autism, and the girl does not. We would like them to be about 2-3 years old.

The next best thing would be siblings, the boy having Autism and the girl not. They should not be more than two years difference in age. Ideally young, like 2-6.

If we can’t find that, siblings where the boy has Autism and the girl does not.

Also please keep in mind that out time frame is early next week, I do not mean to rush everyone but we have a deadline and if you would like to participate please bear it in mind.

A small baby who sees his father burst into tears suddenly starts crying himself, his sad little face the very picture of misery. Is this empathy? Or is it, as psychologist Andrew Meltzoff, co-director of the Center for Mind, Brain and Learning at the University of Washington in

slightly more evolved creature -- a toddler -- watches her mother wince and yell “Ouch!” after hitting herself with a hammer. The child suddenly picks up a teddy bear and toddles over to give it to her mother.

Now, that’s got to be empathy, right? After all, the child not only knew, or seemed to know, what her mother was feeling, she had an appropriately compassionate response.

But then, what about chimps? When two chimps fight, says Lisa A. Parr, a research associate at the Yerkes National Primate Research Center in Atlanta, the loser is often consoled by a third chimp, who will walk up to the victim and offer a kiss or a hairy arm around the shoulders. Sweet, just like the toddler.

But do chimps, or toddlers for that matter, really understand what they’re doing? And if they do, are they acting from altruism, or a more selfish desire to calm their fellow creature so that they feel less distressed themselves? Empathy is what we all claim we want more of -- from our spouses, our bosses, our friends and, perhaps especially, our harried doctors. But what is it, exactly? Does it truly aid healing to be understood? Do empathizers run the risk of burning out if they care too much? And how, if empathy is such a good thing, can we get -- and give -- more of it? Empathy is nothing less than “the unseen glue that holds civilization together,” says Meltzoff.

From an evolutionary point of view, we’re probably hardwired for empathy, which confers “selective advantage,” allowing the young -- and the species -- to survive, says Dr. Steven Hyman, provost at Harvard University and professor of neurobiology at Harvard Medical School.

Indeed, “if parents are not empathic, then that infant is at greater risk of perishing,” says psychologist John Cacioppo of the University of Chicago.

Empathy is important from a mental health point of view, too. The inability to empathize is a hallmark of autism, a condition characterized by social withdrawal. And sociopaths are dangerous in part because their lack of empathy allows them to commit atrocious acts without remorse.

But understanding empathy can get tricky. For those, like Robert W. Levenson, director of the Institute of Personality and Social Research at the University of California at Berkeley, empathy comes in three forms. “Cognitive empathy,” he explains by e-mail, is “knowing what someone is feeling.” This does not automatically imply kindness. “I can know how you feel and torture you, intensify the pain,” says Paul Ekman, a psychologist at the University of California at San Francisco School of Medicine, who studies empathy and facial expressions.

“Emotional empathy,” says Levenson, is what most of us mean by the term, “feeling what someone is feeling.” And compassionate empathy is doing something about it -- offering a teddy bear or a kiss.

The capacity for empathy probably grows, at least in part, out of a baby’s inborn ability to mimic facial expressions, theorizes Meltzoff. Literally from the moment of birth, his work shows, a baby will stick out his or her tongue while watching an adult do so, or mimic an adult’s open mouth or frowning face.

Through this mimicry, the infant constructs a worldview that says, in essence, that other people are “like me,” he says. Empathy, including the sophisticated talent for treating others as you would like to be treated, “builds on primitive imitation.” Ekman’s work supports this idea, showing, in fact, that merely imitating someone else’s facial expression can elicit that feeling in oneself. But Ekman’s work also suggests that facial mimicry is not absolutely necessary for empathy. His studies show that patients with facial paralysis (Moebius syndrome) can nonetheless develop normal cognitive and emotional empathy.

At the Neuropsychiatric Institute at the University of California at Los Angeles, Dr. Marco Iacoboni, an associate professor, used a technique called functional MRI to obtain brain images of people observing and mimicking the facial expressions of others showing fear, surprise, disgust, anger, sadness, and happiness.

He found that a specific set of circuits -- including a tiny, island-shaped structure called the insula -- “light up” whether people are merely observing an emotion or trying to imitate it, although this response is stronger when they’re actively imitating.

This suggests, Iacoboni says, that “some treatment based on imitation might help people with emotional disorders like autism.” It also suggests that “the way you understand the feelings of others is through your own body.” The trick, of course, is to do this without drowning in the other person’s feelings. A good psychotherapist, says Dr. Paul McHugh, a professor of psychiatry at Johns Hopkins Medical Institutions, can experience a patient’s feelings as if they were his own, but without accepting the patient’s assumptions.

For the rest of us, there are potential pitfalls. In some people, experiencing another person’s pain can lead to “empathic over-arousal,” says Nancy Eisenberg, regents professor of psychology at Arizona State University in Tempe. In this unpleasant state, the focus then becomes one’s own feelings of stress rather than the other person’s need. The over-aroused person may have to leave the room or emotionally withdraw to feel better.

Empathy can even be too much for some people seemingly in need of it, she says. “Empathy could lead someone to feel they are being pitied, especially if that person has a strong need to be autonomous.” But most of the time, we all want more empathy, not less. After all, says Dr. Jonathan Kolb, a psychoanalyst at the Boston Psychoanalytic Society and Institute, “When you’re feeling bad, nothing is as helpful as returning to that kind of basic, bedrock caretaking.” © Copyright 2003 Globe Newspaper Company.

[The ability, or ironically, the inability to tell lies (or to “sugar-coat” the communication of difficult truths) is a deficit often experienced by people with Aspergers. By Richard A. Friedman, M.D.] http://www.nytimes.com/2003/07/29/health/psychology/29BEHA.html

Prevaricate. Equivocate. Fib. Call it what you like, it’s still lying. And lying, as everyone knows, is just bad and wrong.

Liars have even been promised cruel and eternal punishment. Dante, in his “Inferno,” hurled them into the eighth circle of hell, along with other falsifiers, putting them one moral step below violent offenders. Their sin? Deliberate and calculated deception, a transgression apparently worse than the spontaneous crimes of passion.

In fact, few human behaviors are viewed as paradoxically as lying. We teach our children that it is wrong, yet we lie every day in the name of civility. We deem those who lie too often or extensively as untrustworthy, while we may call those who lie too little guileless. And though we routinely expect marketers and politicians to lie, we spare them no end of moral outrage when they do.

But lying is much too interesting to be left just to the mercy of moral examination. Lies may not be as sexy or revelatory as dreams, but they can tell us a lot about the psychology of their owners.

There may be nothing uniquely human about deception: some experts say chimpanzees can fake out rivals. But lying requires something special that, so far, seems the sole province of humans: a theory of mind. To lie effectively, one has to have a notion that other people have minds and can be deceived.

By the time most children are 4, they have acquired the ability to deceive others, a skill critical to survival. For example, shown a tube of Smarties candy filled with pencils, 4-year-olds can imagine that other children who don’t know the trick will falsely assume that the tube contains candy. In other words, these normal 4-year-olds have learned that others can be fooled by a false belief.

Some brain illnesses like autism interfere with this skill. Most autistic children fail at the false belief task and, by inference would have a hard time deceiving others.

Of course, most of us have mastered the skill of lying. And lies, like secrets are rarely as interesting as the psychological reasons behind them.

A patient of mine was terribly embarrassed to reveal that she hid special foods for herself in the kitchen away from other family members. It was a secret she had told no one because it made her look selfish and devious, she said.

But the secret concealed a far more important fact: she grew up with a depressed mother who fed her and her sister erratically. So hoarding was her way to cope with deprivation. When she realized this, the secret was no longer shameful.

For some, the aim of lying is to feel better about themselves. A successful businessman told me that he routinely exaggerated his accomplishments. He would inflate his test scores and claim that he had won athletic competitions when he had really placed only second or third.

He had, like others with narcissistic personality disorder, the constant fear of being unmasked as a fraud, a sense that no achievement could relieve. Lying for him was a means to bolster his fragile self-esteem.

Perhaps the most interesting liars are people with antisocial personality disorder. Antisocial people have deficient or absent consciences that allow them to engage in all kinds of mischief with little or no guilt.

They can be superficially charming, but they often lack empathy and have no trouble lying, stealing or being violent. They lie frequently to get their hands on something that isn’t theirs or to escape a mess that is.

What’s intriguing is that antisocial people seem to have fundamentally different emotional and biological responses from others. For example, researchers have found that antisocial subjects have diminished responses to facial expressions of sadness or fear and that their response to fear is generally blunted.

This may explain, in part, why antisocial people seem undeterred by punishment or can’t learn from the negative consequences of their own behavior.

In contrast to normal people who experience anxiety when they lie, antisocial people can lie with complete composure. And because they experience little physiological arousal, they can often fool a polygraph test, which detects peripheral signs of anxiety like a rapid heart rate.

Anxious truth tellers, meanwhile, can easily fail simply because they’re nervous, throwing the validity of the polygraph into question.

Recently, some researchers tried to detect lying with brain imaging. Dr. Daniel Langleben of the University of Pennsylvania used functional M.R.I.’s to study brain activity in 18 normal volunteers. They were told either to lie or tell the truth to a computer about whether they had a certain playing card.

Dr. Langleben found that activity in two brain regions, the anterior cingulate cortex and superior frontal gyrus, increased when subjects lied. These same areas were activated when subjects told the truth, but lying produced even greater activity.

The implication is that the brain must exert more effort to lie than to tell the truth and that deception involves active suppression of a truthful response, Dr. Langleben said.

Or as Mark Twain used to say, when in doubt tell the truth. It’s obviously a lot easier than lying.

Although this study tried to minimize the confounding effect of anxiety, the fact is that the anterior cingulate cortex is involved in emotional processing, so there is no way to know for sure whether the increased activity in this area is the neural signature of lying or is just being nervous about lying.

So we can all just relax. No one can yet read our minds, or hearts. For now, there is no technology that will make lying obsolete.

An English study on autism is the first to report what appears to be a leveling off of the steep rise in new cases, the researchers say.

The study, led by Dr. Brent Taylor of University College London, was published last week in The Archives of Disease in Childhood, the pediatric journal of the British Medical Association. An earlier study by Dr. Taylor had described an “exponential” increase in the London metropolitan region among children born from 1979 to 1992.

The new study examined new cases among children born in the next six years and found that the prevalence of autism disorders stayed essentially unchanged after 1992, at 2.6 per 1,000 children, a rate in line with other recent surveys and far higher than estimates from 20 years ago.

Autism interferes with the early development of the brain, undermining many skills, including those that are the building blocks for language and social interaction. Reported cases have risen steeply in many countries, outstripping the resources for treatment and setting off a debate over whether the increase reflects greater awareness and better diagnosis or unknown environmental factors.

Dr. Taylor said the findings were consistent with better detection, noting that the age of diagnosis in children fell steadily in the study. That probably made the increase steeper in earlier years, he said.

But Dr. Eric Fombonne, a professor of child and adolescent psychiatry at McGill University, who had no connection with the study, said that its findings should be interpreted with caution. They did not appear to be consistent with data collected in other settings, which appear to continue to show an increase, he said.

Death of 6-yr-old Autistic Boy Gives Scientists Priceless Help Brain donation given in search for autism’s causes

During his too-short life, Laura and Daniel Walsh helped their son, Jason, live with autism.

With the boy’s death in May, a month before his 6th birthday, the Mt. Lebanon couple hopes to help researchers learn more about the causes and treatment of autism.

The Walshes donated Jason’s brain to the Autism Tissue Program in Princeton, N.J., which makes study samples available to scientists trying to unravel the mysteries of this neurodevelopmental disorder.

The program is an effort of the Autism Society of America Foundation, the National Alliance for Autism Research and the Medical Investigation of Neurodevelopmental Disorders, or M.I.N.D., Institute of the University of California at Davis.

Director Jane Pickett talked about the tissue project at the society’s national conference, held earlier this month in Pittsburgh.

Laura Walsh told the audience about Jason and urged families to consider participating.

Up until he was 1 1/2, Jason seemed like most kids his age. He spoke about 10 words, his mother said, including “Dad,” “door,” “down” and “Barney.” He hadn’t yet mastered “Mom.” He made his family laugh at his antics at the dinner table.

“He had a clear-cut regression,” Walsh said. “It seemed like it was overnight.”

As a youngster, she had told her mother that she wanted to teach autistic children, and she had written a paper on autism in college.

“It was just a fluke that I ended up having Jason,” said Walsh, an at-home mom. “But I knew what [the problem] was.”

She told her pediatrician, who referred Jason to specialists at Children’s Hospital for an assessment. Because the boy was so young, making the diagnosis wasn’t easy. Without one, though, he could not receive intensive early intervention services.

Doctors ruled that Jason had a non-specific pervasive developmental disorder, which is one of a spectrum of autism conditions. Soon afterward, he was getting behavioral therapy and other services at home. Walsh said that his aides predicted that he would do well because he was coordinated and young enough that he might regain speech.

“We went on for three-and-a-half years until they finally said it really wasn’t working,” Walsh said. “He would learn skills and forget them like almost overnight.”

She also looked into the possibility that Jason had a rare seizure disorder, for which a Chicago specialist recommended trying oral steroid therapy. The boy had been taking the pills, which suppress the immune system, for less than two months when he became very ill.

Emergency room doctors said it was the flu or croup, and that he’d be fine. That March night, Walsh tried to ease Jason’s breathing problems by holding his head out of the window and sitting in a steamy bathroom. By morning, she was so worried that she took him to his pediatrician more than an hour before his scheduled appointment, hoping for reassurance. Instead, the boy was rushed back to Children’s and admitted into the intensive care unit.

Jason had developed acute respiratory distress syndrome. For the next two months, he needed a machine to breathe. Despite numerous tests and treatments, he didn’t improve.

“After a while, it was like we were torturing him,” Walsh said. “An autistic child doesn’t want to be poked and prodded. The last thing Jason wanted to do was be with a bunch of strangers.”

Hearing that he was unlikely to recover, the family stopped taking extraordinary measures to keep him alive. Walsh had wanted to donate her son’s organs for transplantation, but other medical issues prevented that. And then another thought popped into her head.

“What can we do for autism?” she wondered. “I had worked so hard to help my son and I know there’s a million parents out there doing the same thing.”

A doctor searched the Web site of the National Alliance for Autism Research and learned about the tissue program. When Jason died on May 9, the Walshes donated his brain.

It was families like the Walshes that got the tissue program going, Pickett said.

Prevalence of Autism And Parentally Reported Triggers In A North East London Population

Lingam R, Simmons A, Andrews N, Miller E, Stowe J, Taylor B. Centre for Community Child Health, Royal Free and University College Medical School, Royal Free Campus, University College London, London NW3 2PF.

BACKGROUND: The recorded prevalence of autistic spectrum disorders has risen over recent decades. Measles, mumps and rubella (MMR) vaccine has been blamed, by causing a “new variant” form of “regressive autism” associated with “autistic enterocolitis”.

AIMS: To estimate the prevalence of autism and to assess any changes in parental perception regarding the onset or causes of autism. METHODS AND

RESULTS: A total of 567 children with autistic spectrum disorder in five districts in north east London were identified, born 1979-98. Reported autism, excluding the 94 cases of Asperger’s syndrome, increased by year of birth until 1992, since when prevalence has plateaued.

This flattening off persisted after allowing for expected delay in diagnosis in more recent birth cohorts. The age at diagnosis of autistic spectrum disorder was estimated to have decreased per five year period since 1983, by 8.7% for childhood autism and by 11.0% for atypical autism. There was some evidence that MMR was more likely to be mentioned as a trigger after August 1997 than before.

CONCLUSIONS: The prevalence of autism, which was apparently rising from 1979 to 1992, reached a plateau from 1992 to 1996 at a rate of some 2.6 per 1000 live births. This levelling off, together with the reducing age at diagnosis, suggests that the earlier recorded rise in prevalence was not a real increase but was likely due to factors such as increased recognition, a greater willingness on the part of educationalists and families to accept the diagnostic label, and better recording systems. The proportion of parents attributing their child’s autism to MMR appears to have increased since August 1997.

Comparison of Placebo and Single Dose of Human Synthetic Secretin ‘Children with autistic spectrum disorders. I: comparison of placebo and single dose of human synthetic secretin.’

Levy SE, Souders MC, Wray J, Jawad AF, Gallagher PR, Coplan J, Belchic JK, Gerdes M, Mitchell R, Mulberg AE. Division of Child Development and Rehabilitation, Children’s Seashore House of The Children’s Hospital of Philadelphia, Philadelphia, PA 19104, USA. levys@email.chop.edu

AIMS: To examine the effect of a single dose of human synthetic secretin (HSS) on behaviour and communication in children with autism spectrum disorder (ASD) using an objective measure of communication and social reciprocity and standardised rating scales.

METHODS: Randomised, crossover, double blind, and placebo controlled trial of a single intravenous dose of human synthetic secretin (HSS) 2 CU/kg. The 62 subjects (3-8 years) were assigned to group 1 (saline

placebo/HSS) or group 2 (HSS/saline placebo). Diagnosis was confirmed by ADI-R (Autism Diagnostic Interview-Revised) algorithm. Severity of symptoms was rated using the CARS (Childhood Autism Rating Scale). Outcome measures included Communication and Symbolic Behavior Scale (CSBS), Ritvo Real-life Rating Scale, weekly Global Rating Scale (GBRS) by parents and teachers, and daily log of gastrointestinal symptoms. The communication subscale of the CSBS, specifying communication function, reciprocity, and social-affective signalling was videotaped and scored by a blinded, trained observer.

RESULTS: Sixty one children completed the study. After randomisation, there were no significant differences in gender, race, age, and parent and teacher GBRS and Ritvo Scale between the two groups. Compared with placebo, secretin treatment was not associated with significant improvement of CSBS standard scores from baseline to 2 or 4 weeks post-infusion. Five children showed clinical improvement in standard scores: two after HSS and three after placebo. There were no significant changes in gastrointestinal symptoms after HSS or saline placebo.

CONCLUSIONS: A single dose of intravenous human secretin is not effective in changing behaviour and communication in children with ASD when compared to placebo.

Autism, Primary Pragmatic Difficulties, And Specific Language Impairment: Can We Distinguish Them Using Psycholinguistic Markers?

Human Communication and Deafness, School of Education, University of Manchester, Oxford Road, Manchester M13 9PL, UK. nicola.botting@man.ac.uk

Three groups of children with communication disorders were examined using a series of psycholinguistic markers to explore whether the tasks could identify children with impairments other than specific language impairment (SLI), and to examine whether the different groups within this clinical population could be distinguished reliably from one another.

The groups comprised children with autistic spectrum disorders (ASD; n = 13, all males; mean age 10 years 10 months, range 10 years 2 months to 12 years 6 months); children with primary pragmatic language impairment (PLI) but who did not have definite ASD diagnoses (n = 25, 22 males, three females; mean age 11 years 3 months, range 10 years 2 months to 12 years 5 months); and children with specific language impairment (SLI) without marked pragmatic language difficulties (n = 29, 25 males, 4 females; mean age 10 years 10 months, range 10 years 2 months to 11 years 9 months).

Clinical markers examined were: the Children’s Non-Word Repetition (CNRep), the Past Tense Task (PTT), and the Clinical Evaluation of Language Fundamentals, Recalling Sentences. First, it was found that the a priori groupings were not sufficiently defined and that four groups were actually present. The PLI group was in fact two separate samples: those with PLI pure and those with some autistic-like behaviours (referred to here as PLI plus, following Bishop 1998).

Second, group comparisons indicated that CNRep was significantly lower for children with SLI than all other groups (although this measure was not such a good discriminator using a specificity analysis). Third, the markers were able to discriminate between all types of communication impairment in normal control participants (n = 100; 51 females, 49 males; mean age 11 years, range 10 years 5 months to 11 years 6 months) with sensitivity levels of at least 75% and specificity of 80%.

Recalling Sentences was the most efficient marker for all groups. Finally, analysis showed that children with PLI plus could be accurately distinguished from all others, scoring most favourably overall on communication markers and on performance IQ scores.

Exploring the Cerebellum With A New Tool: Neonatal Borna Disease Virus (Bdv) Infection Of The Rat’s Brain.

Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, Maryland 21205, USA. mpletnik@jhmi.edu

Cerebellar pathology has been associated with a number of developmental behavioral disorders, including autism spectrum disorders. Despite the fact that perinatal virus infections have been implicated in neurodevelopmental damage, few animal models have been developed to study the pathogenesis involved. One of the most interesting in vivo models of virus-induced cerebellar damage is the neonatal Borna disease virus (BDV) infection of the rat brain.

The present review describes molecular, cellular, neuroanatomical, neurochemical and behavioral features of the BDV model and also provides a basis for a new understanding of the pathogenic mechanisms of cerebellar malformation and associated behavioral deficits.

Autism and Thimerosal-Containing Vaccines. Lack of Consistent Evidence for an Association

Stehr-Green P, Tull P, Stellfeld M, Mortenson PB, Simpson D. Department of Epidemiology, School of Public Health and Community Medicine, University of Washington (Stehr-Green), Seattle, Washington, USA

In 1999, concerns were raised that vaccines containing the preservative Thimerosal might increase the risk of autism and/or other neurodevelopmental disorders.Between the mid-1980s through the late-1990s, we compared the prevalence/incidence of autism in California, Sweden, and Denmark with average exposures to Thimerosal-containing vaccines.

Graphic ecologic analyses were used to examine population-based data from the United States (national immunization coverage surveys and counts of children diagnosed with autism-like disorders seeking special education services in California); Sweden (national inpatient data on autism cases, national vaccination coverage levels, and information on use of all vaccines and vaccine-specific amounts of Thimerosal); and Denmark (national registry of inpatient/outpatient-diagnosed autism cases, national vaccination coverage levels, and information on use of all vaccines and vaccine-specific amounts of Thimerosal).

In all three countries, the incidence and prevalence of autism-like disorders began to rise in the 1985-1989 period, and the rate of increase accelerated in the early 1990s. However, in contrast to the situation in the United States, where the average Thimerosal dose from vaccines increased throughout the 1990s, Thimerosal exposures from vaccines in both Sweden and Denmark-already low throughout the 1970s and 1980s-began to decrease in the late 1980s and were eliminated in the early 1990s.

The body of existing data, including the ecologic data presented herein, is not consistent with the hypothesis that increased exposure to Thimerosal-containing vaccines is responsible for the apparent increase in the rates of autism in young children being observed worldwide.

New Brunswick, Canada: Parents with autistic children confronted New Brunswick’s Family and Community Services Minister, Tony Huntjens, on July 25 and demanded the release of a 21-year-old autistic man being held in a psychiatric hospital in Saint John.

“This is the most difficult thing I have ever faced,” says Muhammad Arif, who is trying to get his autistic son, Walleed, out of Centracare, a psychiatric hospital in Saint John. His son has been there for more than a year and Arif says he hasn’t been given a reason why. “I cannot believe that this kind of lack of compassion and this kind of atrocity will go on so long as it has gone.”

Other parents of autistic kids from Fredericton, Moncton and Miramichi came to support Arif. But they say their fight goes beyond freeing Walleed.

“We here today are a group of parents with autism. We live, eat and breathe autism. We know what the struggles ar, but as you well know, the incarceration of Walleed Arif into Centracare is totally unacceptable,” said Shirley Smallwood.

Arif and his supporters walked from the legislature to Family and Community Services offices. They confronted the Health Minister, who says its takes time to solve problems. “I’ll try to intervene and work with the education system and the parents to see if we can come up with a solution.”

The province has set aside Canadian$2.8 million for treating autistic children under the age of five. The group of parents want to meet the Minister again to discuss how treatment can be extended to an older age and be covered by Medicare. Hutchins has agreed to meet Arif on July 28 regarding his son. Walleed.

The protesters claimed that the mental-health facility was not well-suited to the needs of autistic individuals and that Walleed’s condition was deteriorating.

Waleed Arif was placed in Centracare by the Department of Family and Community Services in March. The move was against the wishes of his parents and against the advice of health specialists, the group claimed.

New Brunswick does not have a mental-health facility specially designed to treat autistic individuals.

Muhammad Arif said his son was now a shell of his former self, after living in an open Centracare ward. “We see death in his eyes ... every week when we go and visit him,” Muhammad Arif said on July 25. “His eyes haunt us.”

Your report, “Study casts doubts on autism link with MMR” (22 July), http://www.thescotsman.co.uk/uk.cfm?id=793132003 is an indication of the desperate measures the Department of Health (UK) has resorted to in the vaccination/autism debate.

The authors of the research underpinning this bizarre conclusion (that there never has been, and that we are not experiencing, an autism epidemic) have previously been associated with similar papers, all dismissing the possible role of vaccination in the huge rise in autism.

One of them was involved in the North Thames study (1999) for which no raw data, to substantiate its findings, was ever produced. This current research is a regurgitation and extension of that study, and it appears to contradict many statements by other advisory bodies.

According to the Medical Re-search Council, autism rates have risen to one child in 166. Research published last year found the measles virus in over 80 per cent of the autistic children clinically examined.

The denial of the worldwide autism epidemic by the government is unconscionable, and has resulted in seriously ill children being abandoned, many in pain and distress, without appropriate medical treatment.

I don’t understand how you can have so little time to deal with autism. The statistics are devastating. It used to be that one child in 10,000 to 15,000 was affected. Now it’s one child in every 250, or even one in 150. What is happening? What is causing this increase? I believe that many more people are affected by autism than by SARS, yet the SARS outbreak was covered extensively in the media this year, and research funded immediately to identify the cause. There are National fundraisers for Childhood Leukemia, and for birth defects, but none for children with autism.

Why is that? My 10-year-old son has autism. For the past 7 years, we have been doing everything we can to help him.

He can now open a door, put on his clothes and his Velcro shoes, cut a hamburger and use a fork to eat it. He likes to read a book before he goes to sleep. He can write and he can spell a lot of words.

I know these are achievements most parents take for granted. I don’t. My son had to be taught each of these activities in tiny steps. We have all worked very hard for years to help him master activities that come naturally to most children.

Most children his age are in fourth grade. They are learning about history, science, fractions, etc.

Each of my son’s teachers has told me that he’s very intelligent. But he’s reading at a first grade level, and he’s falling further behind each year.

Why is an intelligent child so far behind his peers? How does this mesh with your “Leave No Child Behind” campaign? I wonder about my son’s future. Will he live in a group home and have “sustained” employment or will he be self-sufficient and a contributing member of society. Will he cost taxpayers millions of dollars or will he be paying taxes?

Please help my son and thousands of other children like him. You are the President of the United States. Please fund autism research.

To send your own message to the President, here are the White House Phone Numbers

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