"Healing Autism: No Finer a Cause on the Planet" ________________________________________________________________

RESEARCH

* $6 Million Grant To Expand Search For Autism Genes

* Researcher Rebuffs Reporter's Reasoning

* The Myth of Autism

ADVOCACY

* ASA Spin Off: United Autism Alliance

CARE

* Los Angeles Kids Get a Private Medical Alert System

* Reader's Posts

$6 Million Grant To Expand Search For Autism Genes

The National Institute of Mental Health (NIMH) today awarded the first installment of an expected $6 million grant over 5 years to researchers at the University of California, Los Angeles (UCLA) for major expansion of a collaborative effort to identify autism vulnerability genes.

Daniel Geschwind, M.D., Ph.D., and colleagues at UCLA Neuropsychiatric Institute will direct the project, in partnership with the citizens group Cure Autism Now (CAN), to add 300 more families to its Autism Genetic Resource Exchange (AGRE) gene bank. The information and samples gathered in the study will be broadly shared with the research community through AGRE and a repository maintained by the NIMH Human Genetics Initiative.

Autism begins in early childhood and impairs thinking, feeling, language and the ability to relate to others. While causes and effective treatments have thus far eluded science, evidence suggests that the disorder is highly heritable. However, it is thought to stem from interactions among multiple, as yet unknown, genes, complicating the research challenge. Recent genome scans have identified several chromosomal sites likely harboring disease vulnerability genes.

"Genetics research is especially promising for understanding autism," said NIMH Acting Director Richard K. Nakamura, Ph.D. "Expanding the AGRE sample to maximize its statistical power will help to pinpoint the vulnerability genes themselves."

The grant will total $6,217,225 over five years, with $1,156,737 awarded today for the first year. Collaborating on the project with Geschwind are co-principal investigators Stanley Nelson, M.D., and Rita Cantor, Ph.D., UCLA; J. Conrad Gilliam, Ph.D., Columbia University; and Christa Lese, Ph.D., University of Chicago.

The AGRE gene bank was created by the CAN Foundation to advance genetics research on the disorder. AGRE DNA samples and clinical data are obtained from families that have more than one member diagnosed with autism, pervasive developmental disorder (PDD) or Asperger's syndrome, which are genetically related. A diagnostic team visits the home of each family to collect the data during a 2-hour screening.

The National Institute of Mental Health (NIMH) is part of the National Institutes of Health (NIH), the Federal Government's primary agency for biomedical and behavioral research. NIH is a component of the U.S. Department of Health and Human Services.

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Researcher Rebuffs Reporter's Reasoning

0,1375,VCS_226_1020477,00.html. In an introductory comment, we warned the readers that the spin given the subject of autism prevalence by the reporter was not supported by the facts she also reported. Dr. Robert Byrd, the researcher from the medical school at UC Davis, quoted by the reporter, confirms this warning in this letter he has submitted to the Ventura County Network and the FEAT Newsletter in an effort to set the record straight. ]

Dear Editor: I am disappointed in [the reporter's] story because data does not exist to support the conclusion she makes.

Misdiagnosis and misclassification are among many factors being investigated in the Epidemiology of Autism in California study mentioned in this article. However, until the study is completed and data available, it is impossible for anyone to discount or disregard the significant increases in autism cases as simply a change in how autism is diagnosed.

The pilot study she mentions was completed solely to test out the process for the larger study. As I did with the reporter, I re-emphasize here that results from it are not valid and therefore cannot be extrapolated to the larger statewide study. In fact, I have declined to release specific pilot data to her and others because I did not want to offer misleading information.

I expect to present results from the statewide study in June 2002. Until then, any opinion about the increase in autism is simply an opinion. There are no data to support the claims made by the article.

Robert Byrd, M.D., M.P.H University of California, Davis School of Medicine

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The Myth of Autism

By Michael J. Goldberg, M.D.

March 2002

office@neuroimmunedr.com

[Dr. Goldberg received his Medical Degree from UCLA and trained at LAC-USC Medical Center. He is the Medical Director of the NIDS Research Institute Scientific & Medical Advisory Board. He is on the clinical teaching staff at both UCLA and Cedars-Sinai Hospitals. He has 17 years experience in evaluating and treating children with disorders that fall within the evolving spectrum of NIDS.]

In Leo Kanner's now classic 1943 paper he outlined the behavior pattern, present from early in life, which he named 'early infantile autism'. Prior to this, there were, in the literature, occasional accounts of individual children whose behavior fitted the picture Kanner later described. Kanner described only the autistic children referred to his clinic and, later on, those attending a particular special school (Kanner,1973). He made no estimates of the numbers in the general population, but thought that his syndrome was rare.

Later on Kanner and Eisenberg (1956) discussed Kanner's original conception of autism and the five features he considered to be diagnostic. These were, a profound lack of affective contact with other people; an anxiously obsessive desire for the preservation of sameness in the child's routines and environment; a fascination for objects, which are handled with skill in fine motor movements (an area of actual weakness in many of the children being diagnosed today); mutism or a kind of language that does not seem intended for inter-personal communication; good cognitive potential shown in feats of memory or skills on performance tests, especially the Séguin form board. Kanner also emphasized onset from birth or before 30 months.

In the same paper, Kanner and Eisenberg modified the diagnostic criteria by selecting two as essential.

These were: 1. a profound lack of affective contact

2. repetitive, ritualistic behavior, which must be of an elaborate kind.

They considered that, if these two features were present, the rest of the typical clinical picture would also be found

THEN: 1 – 2 children / 10,000

NOW: 1 child / 500, with much higher numbers being quoted routinely

So, how can so many children now have such a previously rare disorder? How can a rare, almost unheard of "severe mental dysfunction" become something every pediatrician is seeing, something every parent is concerned about? How can we now have this rare misfortune become an epiphenomena threatening to overwhelm our school and social systems, while destroying families across this country, and around the world?

To understand this, one needs to go back to the beginning. Per above, Kanner (1943) described a disorder by its "behavioral" features. Needless to say, "behavioral" dysfunction can be caused by many factors, NOT just the idea of a developmental or psychiatric dysfunction, as held forth, for so many years. Think of it, an idea, literally now dictum, held forth over decades, with ONLY a "behavioral" pattern for diagnosis, not one objective or consistent physiologic dysfunction or finding required to prove or disprove this "disorder / diagnosis," (but "somehow" all these children have it FOR LIFE). In fact, over the years, to this day, health professionals have had no idea what causes this disorder. Explanations have ranged from childhood schizophrenia to bad parenting to "something" biologic, all with the underlying concept that "something" must have happened "developmentally." Somehow (mechanism unknown) the brain was "miswired," these children were not okay, COULD NOT be okay (but with NO idea of what was happening, WHY it happened, even HOW it happened).

Graduating medical school (UCLA) I was told that IF I saw one Autistic child in my entire lifetime of practice it would be "one too many." Over the last 10 – 15 years that is sadly no longer true for myself or many other pediatricians. How can this be? Scientifically (logic not myth) how can this be possible?

Since "developmental" disorders were NOT considered "medical" disorders, medical doctors were not the primary physicians consulted or involved with their management.

Likewise, the brain was essentially a "Black Box," with essentially no real evidence allowing study or insight into what was really happening with this or most "neurological" or "psychological disorders. If there was NO definable objective reason for what was happening, "it must be psychological" seemed the standard cry of medicine. Therefore, as Psychologists and Psychiatrists rapidly expanded the above definition to include all the children appearing with "spectrum" dysfunction, the first large mistake was made.

Suddenly (mid - late 80's / early 90's) there were a lot of children appearing that did NOT fit "classic" Autism. This should have created appropriate questions and initiated scientific, medical investigations.

"What's going on? Why are we suddenly seeing so many dysfunctional children? Maybe something is wrong here? MAYBE this is not Autism? Instead, literally the "definition" just kept being expanded, modified, and ALL the new children were just put into a variation of the OLD basket. It is very likely, children and society itself would be way ahead IF instead of expanding the "basket" enlarging the alphabet soup of Autism (PDD, Aspergers, Autistic spectrum, LKS variant, etc.), experts had said, maybe this is NOT Autism, maybe we have another problem (with some "Autistic" like

symptoms) occurring.

Instead they (the "experts") just kept expanding the definition, expanding the "basket" but NEVER asked the critical question, do these children even belong in this basket? How many parents (often against their own belief) presently are being told their children have this strange disorder (or are on the spectrum) and they must learn to live with it, accept it? How many parents think their children even come close to meeting Kanner's main criteria "a profound lack of affective contact and elaborate repetitive, ritualistic behavior?"

The good news is science is finally on the children's side, but sadly it appears the old logic and system are many years away from changing or waking up. A cold, hard fact of science says "You cannot have an epidemic of ANY type of genetic or developmental disorder" It is impossible, cannot happen, there are NO exceptions!! And yet, the vast majority of the researchers in this country, the world, are still studying these children as if they truly had some undefined, unknown "developmental" disorder.

Instead of looking for the correct answers, instead of focusing on at this point what can ONLY be understood as a DISEASE (not developmental) process, the "system" continues to fund researcher's trying to figure out and understand "Autism" (as a developmental disorder).

This is why so little progress has occurred in spite of millions of dollars being spent.

Researchers are being funded to study what 99.9% of the children appearing today CANNOT have. IF this process continues, EVERYONE will lose (except the researchers and universities receiving mass amounts of funding and the "industry" of "alternative therapists" helping to try and "treat" these sadly dysfunctional, "special needs" children).

As noted, it is blatantly obvious to all but the "system," 99.9% of your children do not come close to meeting Kanner's definition of Autism. It has become absolutely safe to say, 99.9% of children being diagnosed as "Autistic" do not have Autism (as the term is understood or used), but rather reflect a disease state, a CNS dysfunction, manifested by many Autistic symptoms, but unlike a developmental disorder, treatable, changeable IF we act quickly enough. But, how many of the present "leaders," how many of the existing "Autistic" groups are questioning present funding, present efforts? How many are going before congress saying we have a large group of children that IF helped, IF treated might grow up to be productive citizens, might pay taxes (rather than utilize tax

services) one day? Why NOT?

That is the "myth" of Autism. Children are being "labeled" with a disorder they DO NOT really have.

Parents are being told there is little hope, when there should be a lot of reasons for hope. As long as we continue to "label" so many children / families with this "undefined," "unexplained" disorder, few physicians, parents, or congressman EXPECT these children could ever really recover, really regain regular function. In the "myth" of Autism, many dangerous or partially successful therapies abound, with "some success (often with large

risks) being better than nothing." Think of the difference, if physicians, therapists EXPECTED a child to recover, were focused on finding answers to fix this now, for this generation of children, rather than accept any degree of "minute" improvement as "wonderful".

It has become obvious, that "neuro-immune," and / or chronic viral connections are the only pathways, the only "proposed" mechanisms that have NO scientific contradictions, and an ever-enlarging compendium of articles in support. While many will pose the questions "where are the controlled studies," EVERY medical fact and recent discovery helps substantiate the likelihood of an autoimmune, "neuro-immune" related process. Perhaps it's time this question / challenge should be turned around.

WHERE are the studies, where is the data showing all these children, all these families have to resign themselves to some permanent dysfunction, incurable disorder? Based on what "objective" data, based on what "objective" studies are we committing so many children and families to this bleak prognosis, a very bleak future?

We ARE presently at a major crossroads. Are we going to continue to follow (blindly) OLD logic, OLD thinking with NO consistent physiologic dysfunction measurable / documented; OR can we unite behind scientifically sound data, more than "reasonable medical probability," and clinical logic before we lose forever the chance to help THIS generation of children. There are excellent researchers, clinicians, and scientists ready to focus on solving this disease NOW, rather than study the "myth," but this effort

(NIDS) remains buried under the wall of "controlled" misinformation.

Unless, we all step up now to change this, to demand clinical science and logic, not "mythology" be applied to these children, the "system" could easily take another 10 – 15 years (or longer) to come around to the right answers. How many are ready to step up and say, "enough is enough"? How many millions of dollars have been spent (particularly in the last 6 – 7

years) with NO answers, NO new hope? Are we all going to wait another decade (or longer as many researchers predict) for possible answers or are we going to help solve this NOW?

The NIDS effort was formed to help look at this crisis appropriately scientifically, logically, MEDICALLY. Many parents are working hard to help make a real future for their children. It is up to all of you to decide if that effort is going to get a chance to succeed NOW for your children. Do we continue to follow "mythology" or do we turn to clinical logic and a true scientific understanding of your children's dysfunction / disease?

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ASA – Los Angeles Spin Off: United Autism Alliance

Hosts the 11th Annual "Autism: A Journey to Solutions 2002" Conference in Los Angeles

doc <- - address ends here.

In a press release from Business Wire, yet-another new autism organization takes form and announces its existence. Like the also newly formed Organization of Autism Research announced here last Friday, the United Autism Alliance is a spin off of the Autism Society of America. Both departures were less than ameacble. It has been an intense year for the ASA as they have undertaken to phoenix themselves into an entity that is more responsive and effective to the needs of its chapters and the autism community.

So far, it is unclear who the alliance is in United Autism Alliance. Cure Autism Now (CAN) has a high profile in the UAA conference this week. CAN is headquarted in that area of California. But there's nothing to indicate an alliance with them, particularly.

The epidemic nature of autism has caught everybody off guard and is perhaps at the bottom of the fracturous state of autism advocacy today.

In a democracy, the people get the leaders they deserve. But is it good enough for your child? Before you answer, ask yourself how involved are you in advocacy?

Below is the Business Wire announcement by UAA on their creation and their conference. –LS

Nation's Largest Autism Conference Arrives at a Time When the State of California Has Declared Autism to Be a Statewide Public Health Crisis United Autism Alliance (UAA), a non-profit 501(c)3 organization that helps people with autism reach their fullest potential and lead meaningful lives, is hosting its 10th annual "Autism: A Journey to Solutions 2002" Educational Conference from March 15-17 at the Pasadena Convention Center & Civic Auditorium in Southern California.

"Autism: A Journey to Solutions 2002," now the largest conference on autism in the nation, aims to educate and offer parents, caregivers and professionals the opportunity to hear from renowned speakers throughout the country and learn first hand about new and exciting advances in autism.

"Autism is a major problem -- a public health crisis in California -- and people need to be aware of how pervasive and far reaching it is. This conference seeks to educate and support lives that are touched by autism," said Frank Paradise, executive director of UAA. "It's grown with the problem. Three years ago, 900 parents attended the conference held in Burbank and since then, we have increased to about 3000 attendees this year."

Autism is a severe, lifelong neurological development disability and, amazingly, three years ago one in 500 children were diagnosed with autism -- today, that number is one in 250. Moreover, 37 percent of all disability cases being filed in the state of California are related to autism. UAA is focused on providing direct services and educational programs to those with autism spectrum disorders and their families to the entirety of Los Angeles County. As autism becomes more prevalent in today's society, it is imperative that the public is made aware of what is available to them.

"Autism: A Journey to Solutions 2002" will feature 30 renowned speakers throughout the country speaking on various topics concerning autism and the services available, 75 product and service exhibitors, and reach over 3000 people who have already signed up for the event.

In addition, there will be three special "Super Sensory" sessions by Gail Gillingham, MS, who will give 60 people (20 people per session) the opportunity to walk in the shoes of a person with autism for an hour in an effort to replicate the experience of their world. These 60 individuals will also have the chance to share their experience with other conference goers at a session held later in the conference. Gillingham has 13 years of experience working in the field of autism and has written two books:

"Autism: Handle with Care" and "Autism: A New Understanding."

Enhancements to the conference include a live interactive "T1" conference from Washington, DC. This will be a unique session that features a technology that is 50 times faster than satellite transmission. Stanley I. Greenspan, MD will speak about "A Comprehensive Developmental Approach for Assessment and Intervention with Autism Spectrum Disorders and Other Challenges in Relating and Communication" and will be able to visually call on people raising their hands in Los Angeles to ask a question. Dr. Greenspan is best known for creating the model of "Floortime" for young children with autism that is now used worldwide and incorporated into thousands of behavioral programs.

About United Autism Alliance

Based in Los Angeles, the United Autism Alliance is a non-profit 501(c)3 association that provides education, support services, community resources and legislative advocacy on behalf of individuals with autism spectrum disorders, helping them reach their fullest potential and lead meaningful lives. The UAA serves as one of the largest resources for persons with autism, their families and professionals who work with persons with autism in Los Angeles County. Additionally, because of its size and scope, the UAA exerts its influence as an advocate surrounding legislation concerning autism and other disabilities at the county and state levels.

Originally the Autism Society of Los Angeles, the UAA was founded in 1969 by a group of parents who united to fight on behalf of their children to prevent them from being placed in state hospitals at an early age and to support the implementation of pilot programs to include all children with developmental disabilities in the public school system.

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Los Angeles Kids Get a Private Medical Alert System, Plus Safe Return

PRNewswire via COMTEX - Los Angeles parents of active children with special health conditions or allergies now can protect their children when they aren't together. MedicAlert Foundation this week in Los Angeles is launching MedicAlert Kidsmart, a service to help parents, school nurses, the medical community and emergency responders react appropriately to a child's specific needs in an emergency.

MedicAlert, the world's leading emergency medical information service, will be cooperating with several Los Angeles-area organizations, including the Los Angeles Chapter School Nurses Association and the Autism Society of Los Angeles (ASLA), to urge parents to protect at-risk children through membership in the nonprofit organization. MedicAlert has a 45-year history of protecting and saving lives of children with food allergies, asthma, diabetes, autism and other conditions in medical emergencies, but has previously not created a special program for them.

Area resident Robyn Olson credits MedicAlert with reuniting her with her son, MedicAlert Member Ryan Olson, who is autistic and nonverbal, on more than one occasion when he fled their El Segundo home. "With MedicAlert, we know we're going to be contacted, usually within minutes," said Olson. "That's a huge comfort to me."

"Ryan's story demonstrates the many ways our service benefits children," notes MedicAlert President and CEO Tanya Glazebrook. "In one instance, all that may be needed is identification. In another, emergency access to a child's medical information may mean the difference between life and death. In any event, MedicAlert gives parents the greatest benefit of all -- peace of mind." In Ryan's case, the MedicAlert 24-hour Emergency Response Center first called his parents and later revealed his identity only to police on the scene of his rescue. MedicAlert Foundation has a long-established relationship with the law enforcement community, which enhances its ability to reunite children with parents.

MedicAlert's 24-hour Emergency Response Center and famous body-worn emblem are effective means of identifying or reuniting families with children who are lost or in an emergency outside of the care of their parents. The emblem carries a unique identification number, not the member's name, so a child's privacy is protected.

Additionally, MedicAlert Kidsmart is offering its new Sports Band Emblem to appeal to active children. The Sports Band is available in several bright colors and patterns, and features a securely locking buckle to help ensure it stays on a child's wrist. It is already a popular choice among young MedicAlert Members, from toddlers to teens.

$35 for your Initial Membership Fee, which includes your first year of Membership and a basic stainless steel emblem. Membership is $20 a year thereafter. Other emblems available for additional charge.

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The Alzheimer’s Association Safe Return Program

The Alzheimer’s Association Safe Return program assists in the safe and timely return of individuals with Alzheimer’s disease or autistic junior escape artists, and related dementias who wander and become lost. With financial support from the U.S. Department of Justice, the Alzheimer’s Association launched Safe Return in April 1993. It is a nationwide program working at the community level. The intent of Safe Return is to be a safety net for memory-impaired individuals who wander.

How does Safe Return help those who wander?

Safe Return is the only nationwide program specifically designed to assist in the safe and timely return of individuals with Alzheimer’s disease and related dementias who wander and become lost.

The registration process gathers information about the patient, 3 caregivers and the local law enforcement agency. A recent photo of the patient can be included. This information is then entered into a database. Upon registration, the primary caregiver will be sent personalized identification products for the patient. The patient will receive a stainless steel ID bracelet or necklace, iron-on clothing labels, and wallet cards. Identification jewelry is also available for the caregiver.

These products are inscribed with the Safe Return 24-hr toll-free crisis line. If the registrant becomes missing, a family member can call Safe Return for assistance. The local chapter provides family support and assistance while police conduct the search and rescue. We work closely with other agencies to facilitate the search process.

You can help by encouraging your clients, neighbor, and friends to learn about Safe Return. And if someone has memory impairments, please enroll them into Safe Return.

A one-time fee of $40 will enroll an individual into Safe Return. Caregiver identification requires an additional fee of $5.

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Readers Posts

We have a HFA 10 year old son who desires Christian school in Sept.2002. Westmont Christian Academy in Pottstown, PA has started Shepherds Palm, a special needs program within their K-12 school. They have one 8th grader with Aspergers now who is mainstreamed. We need to find a least 1-2 other HFA students to develop a learning support classroom (with a lot of reverse

inclusion) for 3-5 graders, who are not yet ready to advance academically in the fully mainstreamed classroom and desire a Christian School for their child. Respond to Cherene at rejoicinginjesus@juno.com

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Has anybody used secretin and would share pros and cons? I saw recently a documentary on TV about this, but I am not very familiar with the product. Before deciding if it's worth using it with my son, James, I would like gather some opinions and find out more information. I would like to thank in advance for taking time to answer my E-mail Luana lumedar@trane.com

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We have a 4 yr. old son. We are in a unique position in that our physician and allergy specialist are willing to working together to create a list/menu of allergies and other conditions to test our son for (including blood work and skin prick tests). The list of things to test him for so far includes food allergies, environmental allergies, lead and mercury levels, and fragile X. This will be a very unpleasant experience for him so I want to be efficient. I am asking for suggestions for tests of any type that he should undergo. RIPSLP@aol.com

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Mom of high-functioning autistic son (5 yrs old) looking to communicate with parents of similiar children. My son is so close to being "typical" that we don't seem to belong in any category--those he encounters expect him to behave like a typical, but he cannot, and it is very sad. jtswans@msn.com

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I am the parent of an autistic child, and I am also a freelance writer. I would gladly volunteer my services to assist others--doing something, anything, to fight against autism makes the day more survivable. If I can help you with my writing, please email me--Amanda Swanson jtswans@msn.com

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My son, 15 and in 9th grade with Asperger's is failing high school, but passing final exams. Is anyone familiar with educational software or on-line schools incorporated into general ed. curriculum? Or is anyone doing homeschool using these programs? Finally, how do you advocate for appropriate educational services, though alternative, to traditional schoolenviroments? Searching in Michigan..Karen Demers [demers@QuixNet.net]

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My name is Kim Henson and I have a seven year old autistic child. I have had the same thing to happen to him. All of sudden he will cry and say"oh, no" He will also do this with laughter. Out of the blue he will just laugh and think that something is so funny. I have never known what causes this either but I think it is just a characteristic of autism. Since we don't know what is going on in their minds anyway, they may be thinking of something sad or something happy. Who knows? Just thought I would drop you a line and let you know that you are not the only one. Kim Henson

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Need help with low cost trucking of refurbishable computers for special ed teachers to develop individualized software. From NYC to Phoenix, within months, 10 -100rd Wt., wrapped on skids. Could pick up at PHX depot or unload with fork lift at College. Machines can add audio and video individualized for matching home and school software.

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APRIL 21, 2002 - 12 Noon to 5pm

THIRD NATIONAL AUTISM AWARENESS RALLY:

"The Power of ONE! I.D.E.A."

FREE and OPEN TO THE PUBLIC

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FEAT'S "Night of Caring" April 27

Sacramento FEAT is holding its' 9th Annual "Night of Caring" Dinner and Auction fundraiser on April 27, 2002. If you have been helped by the FEAT and the Daily Newsletter and would like to show your appreciation you can by supporting our fundraiser. Make an auction contribution or sponsorship donation. Please call 916-843-1536 for more information. Thank you.

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