SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

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October 23, 2002 Promote Your Event - Free! - Send a

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TREATMENT

* Autism Therapy Is Called Effective, but Rare by NY Times

RESEARCH

* Major Gene in ADHD Found; Targeted Region Also Linked To Autism

LETTERS

* Bradstreet Defends Taurine, Criticizes FDA

* To The NY Times

* To The LA Times

FUNDRAISING

* Autism Research Scores Big at Giants Stadium

* Readers' Posts

TREATMENT

Autism Therapy Is Called Effective, but Rare

No one has found a cure for autism, the neurological disorder that leads to lifelong impairments in a child's ability to speak, respond to others, share affection and learn. But there is a growing consensus that intensive early intervention is both effective and essential — the sooner after diagnosis, the better.

Early intervention, which involves many hours of therapy with one or more specialists, does not help every autistic child to the same degree. It is best started no later than age 2 or 3, and for reasons that are unclear, it does not help some children at all. But for those who are helped, their parents say, the changes are miraculous.

Yet the success of early intervention is posing a painful predicament for schools and families — a predicament made more immediate by a rising tide of diagnoses of autism. Last week, researchers reported that the number of austistic children in California had risen more than sixfold since 1987, and other states and the federal government have also noted sharp increases.

By federal law, public schools must provide appropriate education for children with disabilities, starting at age 3. But the treatment is so expensive — averaging $33,000 a year, according to research published in the journal Behavioral Intervention — that many families cannot persuade their school districts to pay for it.

Brian and Juliana Jaynes of Newport News, Va., can testify to that. As a baby, their son, Stefan, developed normally, if not ahead of the curve. By age 2, his vocabulary was well over 100 words. He knew his address and his colors, and he spoke in short sentences. But soon after his second birthday, he started to regress, forgetting the words he once knew.

His parents suspected a neurological disorder. A specialist confirmed their suspicions, telling them Stefan was severely autistic and urging them to get intensive therapy for him.

Instead, school officials placed Stefan in a special-education preschool, where, the Jayneses say, he rapidly regressed. (The school district says the placement was appropriate.) After the neurologist told the frantic couple that their son might have to be institutionalized, they removed him from the preschool and began 40 hours a week of behavior therapy at home.

It cost them more than $100,000 over three years. Today, Stefan, 11, attends a school for autistic children and has vastly improved his language, social and self-help skills. He can say some simple sentences and communicate his needs; perhaps most important, he spends more and more time interacting with his family, and less time in his own world. The behavior therapy, his father said, "has brought about an awakening in this little boy's personality that is truly a miracle."

In recent years, four leading institutions — the American Academy of Pediatrics, the American Academy of Child and Adolescent Psychiatry, the Surgeon General and the National Academy of Sciences — have called for early intervention, including one-on-one therapy, for children with autism. A panel of experts convened by the academy last year recommended a minimum of 25 hours a week, 12 months a year.

But Dr. Catherine Lord, the panel's chairwoman and a psychology professor at the University of Michigan, estimates that fewer than 10 percent of children with autism are getting the recommended level of therapy. "Almost everywhere, schools will say kids are getting services," she said. "But what they're getting varies enormously."

Because the young nervous system has a great deal of plasticity, many experts believe that early intervention enriches neural growth.

Dr. David L. Holmes, president of the Eden Institute, an autism center in Princeton, said, "If you have a child with autism who's not wired correctly, and we allow that to continue without intervention, those neuropathways will become fixed, and it becomes far more difficult to undo that tangled mess."

Autistic children lose the ability to learn by observation, something other children do constantly. Behavioral therapy is aimed at teaching these children how to learn. Teaching an autistic child to wave goodbye, for instance, can take 40 hours of repetitive lessons.

Autism Therapy Is Called Effective, but Rare (Page 2 of 2) There are several kinds of therapy. The most popular — the one Stefan Jaynes receives — is applied behavioral analysis, in which a therapist asks a child to perform small tasks and then offers feedback to reinforce correct responses.

Other programs use sensory integration therapy, based on the theory that autistic children have defects in processing the messages from their five senses; auditory integration therapy, which assumes that some are oversensitive or undersensitive to sound or have problems processing sounds; speech therapy; and group programs.

The federal education law leaves decisions about therapy to professionals and parents. But administrators say parents often demand far more therapy than the experts recommend. "Is the school system going to override teachers, and substitute the teacher's decision with the parent's decision?" asked Bruce Hunter, associate executive director for public policy at the American Association of School Administrators in Arlington, Va.

The biggest obstacle is budgetary. "When you're looking at limited resources in a school district, sometimes the available resources drive what services schools will propose to offer," said David Egnor, policy director at the Council for Exceptional Children. "It's simply pragmatic."

Mr. Hunter added: "The problem all along in special ed is that you have a chronic shortage of money that is exacerbated by downturns in the economy, which is when it really gets bad. You get the joy of taking the money from one group of children and spending it on another group."

Under law, the federal government may reimburse states up to 40 percent of the extra cost of educating a child with a disability. But this year, Congress is paying just 17 percent, or $7.5 billion. President Bush has proposed adding $1 billion next year.

"The federal and state governments ought to pay attention to these children who have disabilities and need to be educated and need special treatment, and that costs money," said Representative Dan Burton, Republican of Indiana, who has an autistic grandson.

But the chairman of the House Committee on Education and the Workforce, John A. Boehner, Republican of Ohio, opposes full financing of the act until major changes are made. He and others have called for reforms in identifying students with disabilities — minority students are classified far out of proportion to their numbers — and in the daunting paperwork for the schools.

Many experts believe society would pay less in the long run if children received appropriate early intervention. An article in Behavioral Intervention in 1998 found that if 100 children were given early intensive intervention and 40 of them had only partial improvement, the public would save $9.5 million over their school years, ages 3 to 22.

Most insurance companies do not pay for therapy for developmental disorders like autism, though a few companies offer reimbursement as part of their health benefits.

Another obstacle to treatment is a lack of specialists. Public schools have a shortage of more than 12,000 special education teachers, and the number is expected to grow as many teachers retire or leave the field.

Advocates say the supply of teachers trained to deal with autism is even shorter, so schools are forced to rely on expensive outside specialists.

Even parents who decide to pay for treatment have trouble finding private specialists. Autism schools and private behavioral therapists typically have waiting lists of more than a year. This forces parents to set up their own in-home school and hire teams of people to provide the 20 to 40 hours a week of therapy. Many parents train themselves in the behavioral therapies, and then train college students, whom they can hire for considerably less money than specialists.

Yet another obstacle to early intervention is delayed diagnosis. Autism is most commonly diagnosed at 20 to 36 months, but experts say the signs often surface earlier. Many families experience delays because pediatricians often dismiss their concerns.

The growing awareness of autism may ease that problem. (Autism is now diagnosed in 1 out of 600 children, by most estimates.) But without appropriate therapy, early diagnosis does little but create frustration for parents, as Stefan's mother, Juliana Jaynes, recalled recently. "I had the doctor telling me that every moment counts," she said. "There's that horrible feeling of time slipping away and nothing being done."

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RESEARCH

Location of Major Gene in ADHD Found; Targeted Region Also Linked To Autism Research by UCLA Geneticists

UCLA Neuropsychiatric Institute researchers have localized a region on chromosome 16 that is likely to contain a risk gene for Attention Deficit Hyperactivity Disorder, the most prevalent childhood-onset psychiatric disorder.

Their research, published in the October edition of the American Journal of Human Genetics, suggests that the suspected risk gene may contribute as much as 30 percent of the underlying genetic cause of ADHD and may also be involved in a separate childhood onset disorder, autism.

Pinpointing a gene with a major role in ADHD will help researchers and clinicians better understand the biology of this disorder and likely lead to the development of improved diagnosis, treatment and early intervention.

“We know there are about 35,000 genes in the human genome. By highlighting this region on chromosome 16, we have narrowed our search for a risk gene underlying ADHD to some 100 to 150 genes,” said Susan Smalley, principal investigator of the study and co-director of the Center for Neurobehavioral Genetics at the UCLA Neuropsychiatric Institute.

“Still, we must wait for independent replication of our results to confirm these findings,” said Smalley, also a professor of psychiatry and biobehavioral sciences at the David Geffen School of Medicine at UCLA. “Ultimately, we must identify the specific risk gene from among the 100 to 150 genes in this region before we can move to the next level of using such findings to help individuals with ADHD."

By studying families in which there are two or more ADHD siblings, the investigators were able to “scan” the entire human genome, containing some 35,000 genes, to focus in on specific regions likely to contain a gene contributing to ADHD.

In their initial scan, several regions showed modest support for a risk gene; however, in a follow-up study of one region on chromosome 16, evidence of a risk gene was striking — with favorable odds of 10,000 to 1. Surprisingly, independent studies have implicated the same region as harboring a risk gene for autism, suggesting that ADHD and autism may have some common genetic underpinnings. Whether a common gene contributes to both remains to be determined.

ADHD and autism are very distinct clinical conditions. Although certain features are shared, the underlying biological mechanisms are thought to be distinct. If a common risk gene on chromosome 16 were found to underlie ADHD and autism, Smalley said, the finding would illustrate that genes affecting neurobiological mechanisms can cut across clinical boundaries, as most geneticists suspect.

“This study provides compelling evidence that ADHD and autism may have a lot more in common than we ever thought, with implications for both diagnosis and treatment,” Smalley said. “However, further investigation is required to determine the significance of this finding, as it is also quite feasible that distinct risk genes underlying each condition just happen to be in close proximity on chromosome 16."

UCLA researchers spent five years collecting clinical, cognitive and genetic data from 203 families with multiple ADHD children. Their initial search for shared DNA markers suggested regions on chromosomes 16, 10 and 12. Focusing their attention on chromosome 16, researchers found a series of molecular “markers” shared among sibling pairs at a rate higher than the 50 percent sharing expected due to their degree of relationship.

Based on the observed degree of DNA sharing among ADHD siblings, the researchers estimate that the risk gene — if replicated by other scientists studying ADHD — might account for as much as 30 percent of the genetic cause of ADHD. As with any initial finding, however, the investigators caution that replication is necessary and that significant work with more families will be needed to find a specific risk gene in that location.

Previous investigations into a genetic cause for ADHD have focused on specific candidate genes, such as those involved in regulation of dopamine, a chemical in the brain implicated in ADHD. Previous studies of dopamine receptor genes (whose products are important in releasing dopamine in the

cells) and dopamine transporter genes (whose products are involved in moving dopamine between cells) suggest they may also be involved in ADHD. The risk for ADHD in individuals carrying these genes, however, is very small, maybe 1.2 to 1.5 times the risk of those without such genes.

ADHD is the most common childhood-onset behavioral disorder, affecting as many as one in 10 children and three times as many boys as girls. Symptoms of both inattention and hyperactivity, which can last into adulthood, can affect school and work performance as well as social skills. Researchers estimate that the cause of ADHD is 70 percent to 80 percent genetic, and the remainder largely environmental.

Autism is a neurological disorder that affects perhaps as many as one in 500 children and usually appears within the first three years of a child’ s life. It affects the brain in the areas of social interaction and communication. Autism, like ADHD, is thought to be due to multiple genetic and environmental factors, although genetics seems to dominate, with more than 60 percent to 70 percent of the underlying cause of autism thought to be genetic.

The National Institute of Mental Health, a University of California BioStar grant and the Wellcome Trust, through the Wellcome Trust Centre for Human Genetics in Oxford, England, provided financial support for the research.

A team of investigators at UCLA and the Wellcome Trust Center for Human Genetics in Oxford conducted the research. The UCLA team includes Stanley F. Nelson and members of his lab, Vlad Kustanovich, Jennifer Stone and Matthew Ogdie of the UCLA Center for Neurobehavioral Genetics and Department of Human Genetics; James J. McGough and James T. McCracken of the UCLA Department of Psychiatry and Biobehavioral Sciences; Rita M. Cantor of the UCLA Department of Human Genetics; and Sonia L. Minassian of the UCLA Center for Neurobehavioral Genetics and Department of Biostatistics. The team from Wellcome Trust Centre for Human Genetics, led by Anthony P. Monaco, includes Simon E. Fisher, Laurence MacPhie and Clyde Francks.

The UCLA Neuropsychiatric Institute is an interdisciplinary research and education institute devoted to the understanding of complex human behavior, including the genetic, biological, behavioral and sociocultural underpinnings of normal behavior, and the causes and consequences of neuropsychiatric disorders.

Research at the Institute’s Center for Neurobehavioral Genetics focuses on the discovery of the genetic basis of major neurobehavioral disorders, including autism, attention deficit hyperactivity disorder, dementias, depression, manic-depressive illness (bipolar disorder) and schizophrenia.

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LETTERS

Bradstreet Defends Taurine, Criticizes FDA

[Last week we reported news clippings, the "FDA Seizes 'Autism' Supplements from Kirkman Labs." Cited as a possible reason for the FDA's action was a quote by Dr. Jeff Bradstreet in the Kirkman Laboratories catalogue where he observed that taurine was useful for treating some children with autism. When Bradstreet was contacted about the matter, he revealed that he had written a letter to the FDA in response to their actions. Here is his letter to the FDA acting commissioner. – LS.]

Dear Deputy Commissioner Crawford:

I am greatly concerned about the tactics used once again to frustrate simple nutritional support in children with autism. Research regarding taurine and its role in autism has been somewhat conflicting due to significant variability and subgroups. Generally, in the US and Europe taurine deficiency is a common finding in autism. Its safety is not in question and the comments from Kirkman Laboratories reflect the general knowledge of medical practitioners who specialize in nutritional issues in the field of autism.

Further, Kirkman's reference to my comments are accurate, but I would like to go a bit further and explain how it is used clinically. Autism is a condition associated with inflammatory bowel disease in a significant subset of children. These children can easily be tested to determine if they are deficient in amino acids (secondary to their bowel disease). Taurine is a conditionally essential amino acid and one which is required for specific biochemical activity in bile salts and has been show to be critical to neuronal development in specific ways.

We measure fecal fat and protein as well as bone studies to aid in our understanding of whether children are getting adequate protein in their diet. Fat in the stool is associated with fat malabsorption - generally from poor bile salt production. Taurine supplementation does assist this defect. Protein malnourishment is a major concern in autism as their restricted interests often lead to bizarre diets. Kirkman has worked with many doctors to develop hypoallergenic supplements so we can specifically treat taurine deficiency (and other problems) when discovered with simple lab tests. There is clearly no intent to defraud consumers on Kirkman's part and a simple request to rephrase comments you might find objectionable - I am sure - would have sufficed.

While I do not know the entirety of the FDA 's rationale for the "raid" it seems like an abuse of regulatory power. The Kirkman company would no doubt have taken constructive comments form the FDA to heart and adjusted their website information accordingly. Your actions interfer with doctors using appropriate nutritional support for their patients without aiding the public in anyway.

I am in no way compensated by Kirkman, I have no interest in the company and derive no income from their sales in anyway.

Please review this matter expeditiously and I will be happy to provide additional information on the need for taurine in autism.

Sincerely,

Jeff Bradstreet, MD Director, ICDRC 321-953-0329

See References:

Adv Exp Med Biol 1998;442:463-76 Related Articles, Links

The role of taurine in infant nutrition.

Chesney RW, Helms RA, Christensen M, Budreau AM, Han X, Sturman JA. University of Tennessee College of Medicine, Memphis, USA.

The importance of taurine in the diet of pre-term and term infants has not always been clearly understood and is a topic of interest to students of infant nutrition. Recent evidence indicates that it should be considered one of the "conditionally essential" amino acids in infant nutrition. Plasma values for taurine will fall if infants are fed a taurine-free formula or do not have taurine provided in the TPN solution. Urine taurine values also fall, which is indicative of an attempt by the kidney to conserve taurine. The very-low-birth-weight infant, for a variety of reasons involving the maturation of tubular transport function, cannot maximally conserve taurine by enhancing renal reabsorption and, hence, is potentially at greater risk for taurine depletion than larger pre-term or term infants, and certainly more than older children who have taurine in their diet. Taurine has an important role in fat absorption in pre-term and possibly term infants and in children with cystic fibrosis. Because taurine-conjugated bile acids are better emulsifiers of fat than glycine-conjugated bile acids, the dietary (or TPN) intake has a direct influence on absorption of lipids. Taurine supplementation of formulas or TPN solutions could potentially serve to minimize the brain phospholipid fatty acid composition differences between formula-fed and human milk-fed infants. Taurine appears to have a role in infants, children, and even adults receiving most (> 75%) of their calories from TPN solutions in the prevention of granulation of the retina and electroencephalographic changes. Taurine has also been reported to improve maturation of auditory-evoked responses in pre-term infants, although this point is not fully established. Clearly, taurine is an important osmolyte in the brain and the renal medulla. At these locations, it is a primary factor in the cell volume regulatory process, in which brain or renal cells swell or shrink in response to osmolar changes, but return to their previous volume according to the uptake or release of taurine. While there is a dearth of clinical studies in man concerning this volume regulatory response, studies in cats, rats, and dog kidney cells indicate the protective role of taurine in hyperosmolar stress. The infant depleted of taurine may not be able to respond to hyper- or hyponatremic stress without massive changes in neuronal volume, which has obvious clinical significance. The fact that the brain content of taurine is very high at birth and falls with maturation may be a protective feature, or compensation for renal immaturity Defining an amino acid as "conditionally essential" requires that deficiency result in a clinical consequence or consequences which can be reversed by supplementation. In pre-term and term infants, taurine insufficiency results in impaired fat absorption, bile acid secretion, retinal function, and hepatic function, all of which can be reversed by taurine supplementation. Therefore, this small beta-amino acid, taurine, is indeed conditionally essential.

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To The NY Times and LA Times Over Autism "Upsurge" Coverage, Editorials

[The following two letters are from Ray Gallup of the Autism Autoimmunity Project in New Jersey.]

To The NY Times

We could find answers now to prevent this epidemic and help those children afflicted with this terrible disease if the National Institutes of Health (NIH) would get serious about finding answers by funding immunology research. They ignore this important research because of the implications with vaccines. Independent research has found that there is a high percentage of children with autism having elevated measles antibody titers and measles in the gut. Other children are being treated for high mercury levels due to the high levels of thimerosal in the vaccines.

Pertussis can cause encephalitis in experimental animals and the measles virus can cause encephalitis as well. If pertussis and measles can do that then consider what happens when pertussis is combined with diptheria and tetanus to form the DPT vaccine; and measles is combined with mumps and rubella to form the MMR vaccine. The MMR vaccine is a live virus vaccine. Vaccines contain thimerosal (mercury), aluminum, formaldehyde and antifreeze among other dangerous toxins. As a friend of mine who is an a pediatrician (whose speciality is infectious diseases) says, "Too many vaccines at too early an age."

The last sentence of your editorial is most disturbing, "It could take years of study to unravel the widening mystery of autism." It shouldn't take years when we are facing an epidemic and we are serious about doing something about this. There should be a push for immunology research into autism and to look at various immune therapies that could help these children. I know of some independent researchers who would make a big difference like Dr. Vijendra K. Singh of Utah State University, Dr. Andrew Wakefield of the International Autism Research Center of Florida, Dr. James Oleske/Dr. Harumi Jyonouchi of the University of Medicine and Dentistry of New Jersey, Newark, NJ and Dr. Arthur Krigsman of the Lenox Hill Hospital/North Shore Hospital, NY. This is a can do proposition but we have to get off of the horse and buggy and get with the 21st century science. The NIH and CDC have to realize this is an epidemic and deal with it and start funding important immunological science and stop throwing millions of dollars at some mystery gene. They maybe finding things for the Human Genome Project but they certainly are not helping our children with autism and stopping this nightmare epidemic.

- Raymond Gallup

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To The LA Times

Autism research concentrates in genetics when it should be looking at immunology research.

Why are children with autism indicating elevated measles antibody titers? This should be looked into with clinical science. Too many vaccines at too early an age is more than likely the culprit. It is no mystery to the parents and independent researchers what is going on with this epidemic. There has never been nor will there ever be a genetic epidemic. So why is all the millions of dollars in research funds going to genetic research into autism?

- Raymond Gallup, Autism Autoimmunity Project

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FUNDRAISING

Autism Research Scores Big at Giants Stadium

[From a report supplied by NAAR.]

The NY Jets were not the only team to win this past weekend at Giants Stadium.

Despite brisk and windy weather, approximately 2,000 people came out for the second annual Northern New Jersey Walk F.A.R. for NAAR autism research walkathon on Saturday, October 19. The event, which was held at Giants Stadium in East Rutherford, NJ, raised more than $228,000 for autism research and is projected to generate nearly $250,000 by the time the last checks are in.

NAAR thanks and congratulates 2002 Northern New Jersey Walk chairs Mary DeMauro and MaryBeth Rothman, and the entire North Jersey Walk committee who helped NAAR score big this weekend. NAAR thanks U.S. Congressman Steve Rothman for his continued support. Congressman Rothman is the uncle of MaryBeth's son, Jack, and spoke from the heart about the importance of advocacy to advance autism research funding from the National Institutes of Health. In addition, NAAR was honored to have NY Giants player Jeff Hatch signing autographs at the event and thanks the NY Giants for their cooperation and support.

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Readers' Posts

Moving back to the US. Thinking of living in Jersey City, NJ. Does anybody know which schools are any good for Autism? nina@hyperia.com

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Are you an HTML wizard? The Schafer Autism Report could use some volunteer help creating some basic forms that then lead to file formats and conversions. Rudimentary stuff, but I can't do the learning curve and I'm not on the genotype (my autistic son Izak is adopted). Contact Lenny at schafer@sprynet.com or come see me at the DAN! Conference this weekend. I'll be sharing an exhibitors table somewhere, there.

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Autism Consultant in the San Diego area for a local NPA (eclectic approach) for 4 years and do some independent contracting. Supervision, parent training, tutoring, highly trained respite, social skills or play therapy. Trained in are ABA, DTT, TEACCH, PECS, PRT, Social Skills (social stories), Sensory integration and Floortime. I am also capable of assessments PEP-R, writing IEP Goals, and Creating individualized programs. Cari Miller Carilnn@aol.com

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