SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

The Autism Calendar, November 2002 Update is out!

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November 08, 2002 Promote Your Event - Free! -

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MEDIA ALERT: The Sunday New York Times Magazine will feature an

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RESEARCH

* Brain Scans Find Language Center Anomaly In Autism

* Cerebellar Abnormalities in Very Young with Williams Syndrome

* Fluoxetine Response In Children With Autistic Spectrum Disorders

* Parent Autism Research Advocacy Group Claims

Co-Ownership of 'Danish' Study

* NAAR-funded Study Reports No Association Between Vaccine and Autism

* Who Funds Mostly Biomedical / Clinical Autism Research Today?

* Another Comment on Danish Study: Mercury Not Addressed, Not Controlled,

Not Irrelevant

AWARENESS

* Voices From Inside The Cage

The World Autism Congress is being held at the

Melbourne Convention Centre from November 10-14

* Readers' Posts

RESEARCH

Brain Scans Find Language Center Anomaly In Autism

Reuters Health - For the first time, scientists have identified in people with autism abnormalities in parts of the brain that are involved with language.

Autism, which impairs a person's ability to communicate and form relationships with other people, usually begins within the first few years of life. Autism may also affect the ability to respond to sights, sounds and touch. Though some children with the disorder are mentally impaired, about one-third are "high-functioning," meaning that they have a normal or near-normal IQ.

Several studies have found that people with autism tend to have larger-than-average brains, but previous studies have not focused on brain regions specifically involved in language.

Dr. Martha R. Herbert of Massachusetts General Hospital in Boston and colleagues did just that, using MRI scans to view the brains of 16 boys with autism and a "control" group of 15 boys who did not have the condition.

Although it is normal for a brain region to be larger on one side of the brain than on the other (asymmetry), abnormalities in asymmetry have been associated with language problems, Herbert told Reuters Health in an interview. In autism, however, she said that the asymmetry has not been well studied in a brain region called the cerebral cortex, which is involved in language.

"We found that there are abnormal shifts in asymmetry in the brains of the autistic boys we studied," Herbert said.

In the language-related cortex, the asymmetry was reversed in autistic boys, the researchers report in the November issue of the journal Annals of Neurology. In boys without autism, this area was 17% larger on the left side, but it was 27% larger on the right side in autistic boys. Asymmetry was reversed to a lesser extent in other parts of the brain, too.

"We don't really know" what causes these differences, Herbert said. "It remains to be seen" whether the abnormalities are a cause of autism symptoms or are a result of something else.

Herbert and her colleagues are continuing to look for abnormalities in other parts of the brain, including the white matter that connects other parts of the brain. The ultimate goal, she said, is to find a way to treat autism either by catching it early or by preventing the brain changes.

SOURCE: Annals of Neurology 2002;52:588-596.

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Cerebellar Abnormalities in Very Young with Williams Syndrome. 'Cerebellar abnormalities in infants and toddlers with Williams syndrome.'

ds=12418794&dopt=Abstract <- - address ends here.

Jones W, Hesselink J, Courchesne E, Duncan T, Matsuda K, Bellugi U. Laboratory for Cognitive Neuroscience, The Salk Institute for Biological Studies, LaJolla, CA 92037, USA.

jones@crl.ucsd.edu

One commonly observed neuroanatomical abnormality in adults with Williams syndrome is an enlarged cerebellum relative to a small cerebrum.

Our study is the first to examine neuroanatomy in young children with Williams syndrome.

Clinical brain MRI was examined in nine young children with Williams syndrome (mean age 21 months, range 7 to 43 months) relative to nine age- and sex-matched normally developing control children (mean age 29 months, range 20 to 42 months), and two children with undiagnosed developmental disorders (6 and 41 months).

Two neuroradiologists who were blinded to participant classification, hypotheses, and regions of interest for the study, sorted the brain scans into two groups on the basis of six neuroanatomical criteria.

The raters placed more of the MR scans from children with Williams syndrome into a separate group when they analyzed features of the cerebellum, but not when they analyzed other brain regions.

Based on their written comments, the raters focused on the large size of the cerebellum in the children with Williams syndrome.

The results lead us to suggest that abnormal cerebellar enlargement is evident in those with Williams syndrome at an early age.

Our results are discussed relative to the cognitive delays observed in Williams syndrome versus other disorders such as autism, leading us to suggest that the cerebellum may play a role in cognition.

PMID: 12418794 [PubMed - in process]

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Fluoxetine Response In Children With Autistic Spectrum Disorders: Correlation with familial major affective disorder and intellectual achievement.

ds=12418789&dopt=Abstract <- - address ends here.

DeLong GR, Ritch CR, Burch S.

Department of Pediatrics, Duke University Medical Center, Durham, NC 27710, USA. Delon006@mc.duke.edu

One hundred and twenty-nine children, 2 to 8 years old, with idiopathic autistic spectrum disorder diagnosed by standard instruments (Childhood Austim Ratings Scale and Autism Diagnostic Observation Schedule) were treated with fluoxetine (0.15 to 0.5mg/kg) for 5 to 76 months (mean 32 to 36 months), with discontinuation trials.

Response criteria are described.

Family histories were obtained using the family history method in repeated interviews.

Fluoxetine response, family history of major affective disorder, and unusual intellectual achievement, pretreatment language, and hyperlexia were used to define a coherent subgroup of autistic spectrum disorder.

Statistical analyses were post hoc.

Of the children, 22 (17%) had an excellent response, 67 (52%) good, and 40 (31%) fair/poor.

Treatment age did not correlate with response.

Fluoxetine response correlated robustly with familial major affective disorder and unusual intellectual achievement, and with hyperlexia in the child.

Family history of bipolar disorder and of unusual intellectual achievement correlated strongly.

Five children developed bipolar disorder during follow-up.

Fluoxetine response, family history of major affective disorder (especially bipolar), unusual achievement, and hyperlexia in the children appear to define a homogeneous autistic subgroup.

Bipolar disorder, unusual intellectual achievement, and autistic spectrum disorders cluster strongly in families and may share genetic determinants.

PMID: 12418789 [PubMed - in process]

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Parent Autism Research Advocacy Group Claims Co-Ownership of 'Danish' Study NAAR response to Comments on Danish Study on MMR & Autism

[NAAR Issued a press release yesterday morning announcing the results of the Danish study and their sponsorship of the research. NAAR's press release follows this later release that addresses some of the criticisms raised by Safe Mind's Sallie Bernard and others since the release of the study.]

The results of a Danish study focusing on the MMR vaccine and autism that were reported in this week’s New England Journal of Medicine have caused widespread discussion within the autism community and general public – and NAAR is fortunate that such interest in research exists in the autism community. This excellent study, co-funded by the National Alliance for Autism Research (NAAR) and the Centers for Disease Control and Prevention (CDC), reports no association between the MMR vaccine and autism. However, some questions have been raised that NAAR would like to address.

First, it has been stated that the Danish study is unable to specifically analyze the relationship between the MMR vaccine and regressive autism in children and the implication that may have on the validity of the study’s conclusions.

While the study did not focus exclusively on children with regressive autism, it does suggest the MMR vaccine does not contribute to regressive autism. If such a trend had emerged, it would have clearly been reflected in an overall increase in the number of autism cases listed in the study – therefore increasing the relative risk. As the authors themselves have stated, this was not the case.

The study does not support the hypothesis that the MMR vaccine is associated with regressive autism, based on the relative risk stated in the study (.92), which is calculated from findings that examine the number of children with autism who received the vaccine and those with autism who did not.

In other words, if a link exists between regressive autism and the MMR vaccine, the total number of cases of children with autism who received the vaccine would be higher, especially based on the statistic that between 10-20% of children with autism have the regressive form of the disorder. A population-based study of this size (over 530,000 children) would have clearly suggested such a trend.

It is also important to explain that the Danish study was designed specifically and solely to investigate the alleged link between the MMR vaccine and autism. One person noted the study’s “failure” to include a thimerosal component, based on a hypothesis that the MMR vaccine and thimerosal may be associated with regressive autism.

Peer-reviewed research cannot and should not be refuted on the basis of hypothesis. Whether there is a link between thimerosal, the MMR vaccine and autism is a hypothesis that may merit additional research, but it does not negate the validity of the study’s conclusions.

While this study is the largest to date examining the MMR/autism issue, NO ONE AFFILIATED WITH THE PROJECT - including the research team, the CDC or NAAR - ever claimed it was the “final word” on autism and vaccines.

The study provides the most solid statistical evidence to date on whether the MMR vaccine increases the risk for developing autism on a population basis. However, additional investigations by the CDC and other government organizations also focusing on the MMR vaccine and autism are currently taking place in the U.S.

The collective results of these studies as well as the Danish study will provide an even clearer picture on the MMR vaccine and autism, helping to develop a more accurate understanding of this controversial issue and a responsible public health policy. In addition, NAAR encourages additional research to address the issue of potentially vulnerable subgroups of the population.

NAAR continues to support additional research on potential environmental factors and autism and invites researchers to submit proposals in this area for consideration.

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NAAR-funded Study Reports No Association Between Vaccine and Autism Results of Danish Study Published in New England Journal of Medicine Nov. 7

A study funded by the National Alliance for Autism Research (NAAR) that will be published in tomorrow’s edition of the New England Journal of Medicine reports there is no association between the MMR (measles, mumps,

rubella) vaccine and autism. The registry-based study – the largest study to date investigating the MMR vaccine and autism – focused on more than 530,000 children born in Denmark between 1991 and 1998, of whom approximately one-fifth did not receive the MMR vaccination. Researchers at the Danish Epidemiology Science Center at Aarhus University in Denmark found no increased risk for developing autism among children who received the MMR vaccine as compared to children who did not receive the vaccine.

The project, “Risk Factors for Neurodevelopmental Disorders: MMR Vaccine & Childhood Autism,” utilizes Denmark’s unique health registry data – which is among the most complete health information systems in the world. The system tracks birth records, vaccination records and records indicating a diagnosis for autism spectrum disorders.

“The design and population size of this study are at the core of its strength, which separates it from any previous studies focusing on MMR and autism,” said Andy Shih, Ph.D., NAAR’s director of Research & Programs. “By using Denmark’s comprehensive health registry system, researchers were able to take advantage of a very large population base and compare risk factors between children who received the MMR vaccination, and those who did not. Many other studies focusing on MMR and autism have not been able to make this type of detailed comparison due to the limits of the health records involved with those studies.” The study also marks the first time a national parent-led autism organization has funded a project on MMR and autism that was published in one of the world’s most prestigious medical journals. NAAR and the Centers for Disease Control & Prevention co-funded the study in 2001.

“As an organization of family members of children and adults with autism, NAAR is dedicated to seeking the truth regarding the cause or causes of autism and funding the very best science available,” said Karen London, NAAR co-founder and a parent of a child with autism. “This study provides us with perhaps the most solid statistical evidence to date on whether the MMR vaccine increases the risk for developing autism."

Additional studies are currently being conducted in the U.S. by the federal government, including the Centers for Disease Control & Prevention. “The collective results from all these studies will provide an even clearer picture on MMR and autism and help the research community and the general public to develop a more accurate understanding of this controversial issue,” said London.

While the Danish study provides strong evidence against the association between the MMR vaccine and autism, Dr. Shih noted that more research is needed to address the issue of whether smaller subgroups of the population are vulnerable to the MMR vaccine.

“The MMR issue remains one of the most intensely debated topics concerning autism and has caused public health situations in some countries,” he said. “We support research that investigates all theories surrounding potential causes of autism, including whether there is a link between childhood vaccines and this devastating disorder."

Immunology is an area of research that receives steady support from NAAR. In 2002 alone, NAAR invested more than $300,000 on three separate projects focusing on immunology and autism, including an additional two-year grant to expand the Danish study focusing on MMR and autism.

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Who Funds Mostly Biomedical / Clinical Autism Research Today?

Yesterday, in a commentary entitled "Autism – A Hit and Run Epidemic", the SAR editor reported that the Autism Research Institute only funded autism treatment-oriented research and not biomedical / Clinical Research into its cause. Bernard Rimland of ARI assures us that they do invest in research on "the cause, prevention and treatment of autism." The ARI currently funds such research by Dr. Singh, Dr. Wakefield and others focusing on mercury found in the gut and in brain tissue.

Autism Research Institute is at

Also Funding Such Research is:

Medical Interventions for Autism

Liz Birt - EAB738@aol.com

Another Comment on Danish Study:

Mercury Not Addressed, Not Controlled, Not Irrelevant

Dr. Rimland also took the opportunity to comment on the controversial Danish study, rejecting it as "another propaganda piece intended to assuage the public's concerns rather than shed light on the MMR-Autism connection." He continues:

"The report starts out by saying that it has been 'suggested' that there is a connection between vaccination and autism, trivializing the substantial body of clinical and laboratory evidence for such a connection. By saying 'it has been suggested', it does not impress me with the objectivity of the authors. I was also very disappointed to see that the authors failed to mention that the mercury-containing Thimerosal is not included in the pediatric vaccines used in Denmark. That is a crucial omission . . .it precludes their findings from being considered applicable to the US population where the children's immune systems, brains and gastrointestinal systems have been subjected to many times the supposedly 'safe' level of mercury because of mercury-laden vaccines.

"The fact that the Danish study reports much lower (50%) prevalence rate for autism in their country than the current US figures is a likely result of their having banned Thimerosal from their vaccines, and reinforces the inapplicability of their findings to the US population." – Bernard Rimland, ARI

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AWARENESS

Voices From Inside The Cage

The World Autism Congress is being held at the Melbourne Convention Centre from November 10-14

Conversations with Tom

The family is sitting down to dinner at a restaurant, and my bloody mary has just arrived on the table. My eight-year-old son Tom, having downed his favourite drink - tomato juice - in one slurp, reaches out for my glass.

"No," I say. "You can't have that. It's a bloody mary. It's a grown-up drink."

Tom's eyes widen. "Is that blood?" he asks.

"No, it's a drink called a bloody mary."

"Is that Mary's blood?"

"No, no. That's just its name. It's tomato juice with grown-up stuff in it. Not for little boys."

And then, staring hard and voice rising with a note of panic, "Is Mary DEAD?"

I made a mental note to order a gin and tonic next time, and set about getting Tom's mind off this track. Otherwise, we could be having this conversation all night.My son is very literal; it comes with the territory of being autistic. If the drink is called a bloody something, then it must be blood, even if it looks like tomato juice. Tom will then follow the thought to its logical conclusion. Autistic people are also very logical. Maybe that's one reason they struggle making sense of a world where most people play by other rules.

It is certainly how the world appears to Dr Temple Grandin, an associate professor at Colorado State University. Profoundly autistic as a child, she has had to learn what others seem to know intuitively: the unspoken language of the body, the unwritten rules of social convention, the games people play.

In the company of humans, she says she often feels like an anthropologist on Mars, as if she is trying to find a rapport with an alien species. It is this voice from inside the cage that has made Grandin one of the best known and most admired autistic people.

From the outside, the autistic mind seems like a shuttered window. Grandin's gift is opening those shutters and articulating with extraordinary insight the way the world appears from the inside looking out.

Grandin will be bringing that insight to Australia as one of the keynote speakers at the inaugural World Autism Congress in Melbourne from November 10 to 14. The congress will bring together medical, educational and psychological experts from 29 countries. They are studying the causes of autism, its treatment and social context.

Conversations with myself

In the dark of night, I wonder if I worked too hard during the pregnancy. Or was it his severe chickenpox at 15 months? Or those odd seizures at nine months? Is there some rogue gene lurking in the family? Could we have done something to prevent it? But torturing myself doesn't change anything. In the morning, I can hear Tom laughing at the cartoons. He comes running in for a cuddle and, in the light of day, not much else matters.Autism was first clinically described in the 1940s. Once considered rare, it is now a relatively common diagnosis. A recent study found that 17 children a week in Australia are diagnosed. The rate matches the disorder's international prevalence. This translates to about one in every 700 people, or about four times the level recognised 30 years ago.

One of the study's authors, Monash University's Dr Lawrence Bartak, attributes the apparent increase to more accurate diagnosis. He says that in the past, many people were wrongly diagnosed with mental retardation or illnesses such as schizophrenia, while those with milder forms of autism - such as Asperger's syndrome - were just regarded as somewhat eccentric.

The condition is also literally more visible. Once, disabled people of any description were routinely institutionalised. Now, autistic children are in mainstream schools and adults are living in the community.

Community integration policies have led to parents demanding more services, and greater professional interest in researching causes and treatments.

It is a puzzling biological condition whose severity depends on the degree to which the sensory perception circuits, by which humans make order of the world, are jumbled or undeveloped. The symptoms are as individual as the individual, but typically, autistic people have difficulty interacting socially and tend to focus on details rather than the big picture in a given situation.

A genetic predisposition is strongly implicated. Autistic traits are often seen among relatives - Grandin, for instance, describes her father as pedantic, remote and socially inept - but no one knows what triggers the difference between a distant eccentric and a person with full-blown autism.

There is speculation about environmental triggers, including controversial research correlating the apparent rise in prevalence with the introduction of triple antigen vaccinations in the early 1980s. Other theoretical triggers include infant seizures, high fevers and the chemical residues now pervading the environment.

And there is no cure, although appropriate therapy can make the difference between institutionalised dependency and living a life with a job and friends, a life like Temple Grandin's.

Conversations with specialists, part I

My husband and I are thrilled that four-year-old Tom is starting to talk. Admittedly, he is mostly parroting what we say, but there seem to be a few spontaneous words, suggesting a desire to communicate. The neurologist is unimpressed.

"Monkey see, monkey do," he says, dismissing what we thought was a significant breakthrough. We are unimpressed. So we shop around until we find a specialist who sees things our way, one who is more interested in Tom's strengths than his weaknesses, and who thinks a fixation with Thomas the Tank Engine is perfectly normal for a little boy, not proof of a pathological obsession. Grandin is deeply concerned about the proliferation of the autistic label; she thinks it is potentially more of a handicap than the autism itself, especially in mild cases where the line between normal variations in behaviour and a disorder is blurred.

"Autism is serious enough to be called a real disorder," she says. "You are talking about a kid with no language, totally bizarre behaviour,

(who) screams every time you go to the supermarket or anywhere, and rocks - anybody will tell you there is something drastically wrong with the kid.

"But when you get into these really mild Asperger's, where it is just sort of a... computer nerd? When you just start giving computer nerds a label that they have a disorder? I mean you have to learn the social skills but one of the things is you are not going to turn the computer person into a social animal."

She worries that a wellspring of ideas may be stifled because society places a higher priority on sociability than creativity. And then where would we all be? "Just think back to the caveman's days. The really social people, they would have been yakking it up around the fire. It was the Asperger's guy that was off in the corner figuring out how to make the first stone spear."

Conversations with specialists, part II

Dr Bartak is musing on the philosophical question of what constitutes "normal". He doesn't see much wrong with someone if they are working or have activities or hobbies they enjoy, and reasonable relationships with others. "They may have started off as a kid with autism, now they are a normal adult with autism," he says.

He says the autism continuum is analogous to intelligence. Just like some people are brighter than others, the cut-off for what is considered abnormal is arbitrary. "The one thing I always say to parents with this diagnosis is that nine-tenths of the child is normal. He is not a walking bag of autism. There is a person in there with an individual pattern of skills and personality."At times, autism has made Temple Grandin's life painful, especially in social situations where what is not said matters as much as what is. It was only seven years ago, for example, that she read about people communicating with their eyes, using subtle expressions such as rolling them. She had no idea that such swift, silent messages even existed.

But she appreciates her autism for making her what she is: a highly sought-after expert in the humane care and handling of livestock. She designs handling yards and abattoirs to reduce animals' stress and suffering. Her success lies in a deep empathy with animals - she says she can "feel" what cattle feel in a way she cannot fathom in humans - and a computer-like mind that thinks in pictures as if running a simulation. She accepts autism as the price of her talents.

It is a long way from the toddler with no language, who spent her days screaming, pulling away from her mother's loving embrace, and painting the walls with her faeces. By the age of three, Grandin said it was obvious there was something seriously wrong with her.

A family doctor told her mother to trust her instincts. So Grandin was enrolled in a nursery school for emotionally disturbed children, where a speech therapist set to work drawing her out. At home, a nanny was hired to play games all day with Grandin and her sister, to stop her from tuning out.

Along the long path to emergence, she found mentors among teachers and employers. They were creative people, Grandin says - a bit "Aspergerish" themselves. They recognised her creativity and saw her fixations as strengths that could be channelled into study and work.

"People accept talent," she says. "One of the things that helped me was when I showed people my drawings (for livestock handling facilities), and people respected that. People respect talent. You can be pretty darn weird, but if you are really good at something, people don't care."

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Conversations between Tom and his sister

They are bickering. This is new. Until a couple of years ago, Tom just followed Imogen's lead. Now they bicker about the computer, about toys, about who is poking who in moments of idle provocation. It drives their parents mad, but we repeat our mantra that anything normal is good - even the bad things. It means Tom is learning the rules of social interaction and can hold his own. It is another breakthrough. In her speech to the World Autism Congress, Grandin will emphasise the need for early intervention, the need for mentors, and the need for identifying and developing talents. And the importance of clear, consistent rules - because autistic people live by the rules, whatever they perceive them to be.

"The thing that worries me, especially since an autistic or Asperger's person learns by logic, is we have got so many bad examples of bad behaviour out there," says Grandin.

"When I was a little kid, there was very clear right and wrong. Superman always went after bad guys. But now you have shows where things aren't so clear and if you are a person who learns by logic, it wouldn't be too good to be raised in an environment where you learn that crime really does pay. One thing I tell parents is you need to have very clear-cut rules about teaching right and wrong. You can't get into abstract stuff."

It is the abstract stuff that the autistic mind struggles to grasp. Like the illogical behaviour of many so-called normal people. Take the meatworks employee, for example, who kept sabotaging equipment Grandin had designed because he was jealous of her talent. It took Grandin a long time to work out why the machinery kept breaking down because suspicion, like jealousy, was an alien concept.

"I am not a political person. I am a logical person. And basically I just wish everybody in the world could just live together and not fight. But that doesn't seem to be the way human beings are. You seem to get into all this lust for power. My motivation is that I am what I think and do, and if I do good things, then I'm good, and I want to do good things."

Conversations with Tom

"What do you want to be when you grow up?"

"I want to make trains! I want to be a train manager!"

On days like this, we know Tom is going to be fine. Different, yes, but just fine.

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Readers' Posts

Does anyone know of any school that caters to Autism in the Houston TX area? If so, please email me at jcopado@utmb.edu

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We live in Central New Jersey (not far from Princeton). We are looking for an ABA instructor to work about 10 hours per week after school and on weekends. Please reply to aeswidler@aol.com

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Looking for a Tutor to join my son's ABA program. Learn State of the Art Behavioral Intervention Therapy. Make a difference in the life of a Loving and good natured child. Part-Time hours.Located in Elk Grove, CA., Just 15 minutes from DownTown Sacramento. Call (916) 683-2461 0r ddwisdom@earthlink.net

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A.I.M. is presenting a free presentation about SID in children with autism, ADHD and Fragile X. All parents of children affected are welcome to attend. It will be at 6:00 PM, Thur. 11/21/02 in the Community Room at Kroger's in the Wal-Mart Plaza in St. Clairsville, OH. Questions please call Wilda 304-232-9499 or Kaye 740-695-5287

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The Schafer Autism Report could use some volunteer help with some basic HTML coding. Simple one or two page projects mostly having to do with forms and some file conversion. schafer@sprynet.com

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