SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

________________________________________________________________

September 23, 2002 CALENDAR LISTING: EVENTS@doitnow.com

*** NOTE GET YOUR EVENT INTO THE OCT. CALENDAR - WED. SEPT 25 DEADLINE!***

RESEARCH / TREATMENT

* Autism May Be Linked to Immune Reactions

* Bacterial Infects & Milk Antigens May Modulate Autism

* 'Cognitive Education' Helps the Developmentally Delayed

* Cognitive Profiles & Social-Communicative Functioning in ASD Children

* Hypersensitivity to Acoustic Change In Children With Autism

* Calif. to Enact Bill Promoting Stem Cell Research

* Designer Baby To Have Perfect Hearing

AWARENESS

* Autism - The Silent Epidemic

* Families of Autistic Children in UK 'Not Getting Enough Support'

* Mother Tells Of Seeking Help - And Diagnosis - For Autistic Son

* Cancer Mom Mobilizes Against Son's Autism

RESEARCH / TREATMENT

Autism May Be Linked to Immune Reactions

It's something many parents know: If a child is autistic, keeping milk and wheat out of the diet helps tame symptoms. But now, scientists think they understand why.

A new study seems to unlock an important piece the puzzle, indicating a link with the immune system.

Autism is a complex syndrome that appears in early childhood; autistic children have difficulties in language development, social interactions, and repetitive patterns of behavior -- such as banging their head against the wall. Whereas a genetic predisposition puts children at high risk of developing autism, scientists have long debated the other triggers that cause the disorder.

Recent studies have shown that children who drink less (or no) milk -- and eat fewer (or no) wheat products -- have improvement in symptoms. They have better social contact, less self-harm (such as head banging), and fewer "dreamy state" periods. Other studies have pointed to environmental toxins -- specifically bacterial and viral infections -- as triggers, says Aristo Vojdani, assistant research professor in neurobiology at UCLA and director of Immunosciences Lab Inc. in Beverly Hills, Calif.

"My study puts the pieces together, how infection produces autism symptoms," he tells WebMD.

His study appears in the August issue of the Journal of Neuroimmunology.

In his study, Vojdani tested the blood of 80 children -- 40 who were autistic and 40 who were not. He looked for any of 12 different antigens -- signs of an immune reaction to various proteins of the brain and nervous system.

Autistic children showed signs of an immune reaction to milk protein and two common infections -- streptococcus and Chlamydia pneumoniae.

Antibodies to milk proteins and antibodies from viruses can be damaging -- and could cause breakdown in what's called the blood-brain barrier.

The blood-brain barrier is similar to a membrane, one that protects our brains from infectious viruses and bacteria. However, various environmental toxins -- such as mercury, lead, and metals -- can cause antibodies to cross the blood-brain barrier, combine with other brain tissue antigens, and thus damage brain tissue.

The researchers also note that although these autistic children had higher levels of these antibodies in their system, they did not look at whether these antibodies represent a risk factor for autism.

Studies conducted two years ago showed that when milk protein is injected into mice, they developed multiple sclerosis-like symptoms, says Vojdani. The same thing happened when streptococcus and C. pneumoniae protein were injected into mice.

Vojdani's study contains "interesting findings, but they need to be replicated," says Fred Volkmar, MD, a child development specialist at Yale University, and the director of the newly established Autism Research Center at Yale.

His advice to parents: "Don't change a thing [in your child's diet] until we report more evidence."

"I think there is substantial validity to the idea that autoimmunity is lined to autism," says Bradley Pearce, MD, assistant professor of psychiatry at Emory University School of Medicine in Atlanta.

"There's a substantial genetic component to autism and to autoimmunity, in that patients with autism have a higher rate of having someone in their family with another autoimmune disease. So the idea is I think pretty solid.

The problem is cause and effect. When we're looking at these antibodies, whether they're actually causing any of the symptoms, we don't really know that. This paper was reasonably well done, but when it comes to cause and effect, it doesn't prove it."

Another possible cause of autism: "It could also be that the antibodies they found in this paper are really the result of the disease rather than the cause. They may be present because there is something wrong with blood-brain barrier."

Also, there may be a genetic abnormality in autism that affects both the brain and the immune system, says Pearce. "There may be some common molecule involved in the brain and in the immune function, but that doesn't mean the immune abnormality is causing brain abnormalities.

"It's also possible that the cause of autism starts primarily with an abnormality in the immune system, that for some reason the immune system is hyperactive and these antibodies produce molecules that cross-react with brain molecules and cause the disease," he says.

However, there's a glitch in Vojdani's logic, says Pearce. "Changes in the brain that cause autism are not similar to changes that cause MS. Autism is not associated with changes in myelin -- the white matter of the brain -- like MS is. In families where there is autism, there is increased incidence in autoimmune disease, but they don't always affect the myelin."

Also, the characteristics of autism and the course of the disease development are not like a typical autoimmune disease, he says.

However, the idea of autoimmunity and autism "is an interesting idea, it's plausible," says Pearce. "The idea that an antibody can cause a complex psychological disease -- like schizophrenia -- is fairly well established.

There are a lot of pieces of puzzle that haven't quit fit together yet, however."

Should kids with autism stop drinking milk? "Many parents choose not to give them milk just because autistic kids have a lot of gastrointestinal problems," says Pearce. "Whether it actually modulates disease, I really doubt. Actually, the GI problems may be associated with the disease." © 2002 WebMD Inc. All rights reserved.

[See abstract below of the research mentioned in this article. This appeared in the August 8, 2002 SAR.]

* * *

ds=12161033&dopt=Abstract <- - address ends here.

Vojdani A, Campbell A, Anyanwu E, Kashanian A, Bock K, Vojdani E. Section of Neuroimmunology, Immunosciences Laboratory, Inc., 8693 Wilshire Boulevard, Suite 200, 90211, Beverly Hills, CA, USA

We measured autoantibodies against nine different neuron-specific antigens and three cross-reactive peptides in the sera of autistic subjects and healthy controls by means of enzyme-linked immunosorbent assay (ELISA) testing.

The antigens were myelin basic protein (MBP), myelin-associated glycoprotein (MAG), ganglioside (GM(1)), sulfatide (SULF), chondroitin sulfate (CONSO(4)), myelin oligodendrocyte glycoprotein (MOG), alpha,beta-crystallin (alpha,beta-CRYS), neurofilament proteins (NAFP), tubulin and three cross-reactive peptides, Chlamydia pneumoniae (CPP), streptococcal M protein (STM6P) and milk butyrophilin (BTN).

Autistic children showed the highest levels of IgG, IgM and IgA antibodies against all neurologic antigens as well as the three cross-reactive peptides.

These antibodies are specific because immune absorption demonstrated that only neuron-specific antigens or their cross-reactive epitopes could significantly reduce antibody levels.

These antibodies may have been synthesized as a result of an alteration in the blood-brain barrier.

This barrier promotes access of preexisting T-cells and central nervous system antigens to immunocompetent cells, which may start a vicious cycle.

These results suggest a mechanism by which bacterial infections and milk antigens may modulate autoimmune responses in autism.

PMID: 12161033 [PubMed - in process]

_______________________________________________________

>> DO SOMETHING ABOUT AUTISM NOW <<

Subscribe, Read, then Forward the Schafer Autism Report.

No Cost!

_______________________________________________________

* * *

'Cognitive Education' Helps the Developmentally Delayed

'The effect of cognitive education on the performance of students with neurological developmental disabilities.'

ds=12237500&dopt=Abstract

Jepsen RH, VonThaden K.

Bancroft NeuroHealth, Haddonfield, NJ, USA.

A cognitive education program was developed to facilitate acquisition of cognitive skills and address the learning deficits of adolescent students with neurological, developmental disabilities, and autism.

This study examined the outcomes of incorporating mediated cognitive education into special education classrooms.

Cognitive education provided cognitive training utilizing REHABIT materials through mediated teaching.

Following a matched pair model, forty-six students were assigned to either a treatment or a control group.

All students received weekly instruction in Individual Educational Program (IEP) goals.

Curriculum areas included IEP objectives in reading, math, social skills, health, science and social studies.

Students in the control group received regular classroom instruction.

Students in the treatment group participated in cognitive educated one hour per week replacing thirty minutes of reading and thirty minutes of math.

Pre and posttest comparisons on measures of intelligence, achievement and adaptive behavior showed those students in the treatment group attained higher scores across measures.

PMID: 12237500 [PubMed - in process]

* * *

Cognitive Profiles and Social-Communicative Functioning in ASD Children

ds=12236615&dopt=Abstract

Joseph RM, Tager-Flusberg H, Lord C.

Department of Anatomy and Neurobiology, Boston University School of Medicine, MA 02118, USA. rmjoseph@bu.edu

BACKGROUND: Whether there is an unusual degree of unevenness in the cognitive abilities of children with autism spectrum disorder (ASD) and whether different cognitive profiles among children with ASD might index etiologically significant subgroups are questions of continued debate in autism research.

METHOD: The Differential Ability Scales (DAS) and the Autism Diagnostic Observation Schedule (ADOS) were used to examine profiles of verbal and nonverbal abilities and their relationship to autistic symptomatology in 120 relatively high-functioning children with ADI-confirmed diagnoses of autism.

RESULTS: Discrepancies between verbal and nonverbal ability scores occurred at a significantly higher rate than in the DAS normative sample

(30%) in both a younger group of 73 children (56%) with a mean age of 5;5 and an older group of 47 children (62%) with a mean age of 8;11.

Discrepancies were mainly in favor of nonverbal ability in the younger group, but occurred equally in favor of verbal and nonverbal abilities in the older group.

Comparison of the two age groups suggested a growing dissociation between verbal and nonverbal (and particularly visual processing) skills with age.

In the older group, children with discrepantly higher nonverbal abilities demonstrated significantly greater impairment in social functioning, as measured on the ADOS, independent of absolute level of verbal and overall ability.

CONCLUSIONS: These findings demonstrate a high rate of uneven cognitive development in children with ASD.

Indications of a dissociation between verbal and visual-perceptual skills among the older children, and the specific association of discrepantly high nonverbal skills with increased social symptoms suggest that the nonverbal > verbal profile may index an etiologically significant subtype of autism.

PMID: 12236615 [PubMed - in process]

* * *

Hypersensitivity to Acoustic Change In Children With Autism: electrophysiological evidence of left frontal cortex dysfunctioning.

ds=12236323&dopt=Abstract

Gomot M, Giard MH, Adrien JL, Barthelemy C, Bruneau N.INSERM U316, Child Psychiatry Unit, CHU Bretonneau, Tours, France. m.gomot@chu-tours.fr

Exaggerated reactions to even small changes in the environment and abnormal behaviors in response to auditory stimuli are frequently observed in children with autism (CWA).

Brain mechanisms involved in the automatic detection of auditory frequency change were studied using scalp potential and scalp current density (SCD) mapping of mismatch negativity (MMN) in 15 CWA matched with 15 healthy children.

Compared with the response in controls, MMN recorded at the Fz site in CWA showed significantly shorter latency and was followed by a P3a wave.

Mapping of potentials indicated significant intergroup differences.

Moreover, SCD mapping demonstrated the dynamics of the different MMN

generators: Although temporal component was evidenced bilaterally in both groups, it occurred earlier on the left hemisphere in CWA, preceded by an abnormal early left frontal component.

The electrophysiological pattern reported here emphasized a left frontal cortex dysfunctioning that might also be implicated in cognitive and behavioral impairment characteristic, of this complex neurodevelopmental disorder.

PMID: 12236323 [PubMed - in process]

* * *

Calif. to Enact Bill Promoting Stem Cell Research

Legislation Challenges Bush Administration on Use of Cloned Human Embryos

California Gov. Gray Davis, in a direct challenge to the Bush administration, plans to sign into law today a bill that would promote research on embryonic stem cells, aiming to make the state a safe haven for the controversial, cutting-edge biomedical science.

The measure, intended to draw a contrast with federal efforts to constrain the research, explicitly supports work on human stem cells, including those extracted from cloned embryos. Davis, a Democrat, is also considering using state money and universities for stem cell research.

The state legislation, the first of its kind in the nation, revives an emotional debate over an issue that preoccupied the Bush administration during its first year. It also adds pressure on Congress to vote on an especially thorny subject that many lawmakers would prefer to ignore.

"The governor feels strongly about putting California ahead of the pack in promoting and encouraging stem cell research," spokesman Steven Maviglio said yesterday. "We'd like to encourage Washington to stop playing politics and support this research."

Although embryonic stem cell research is legal in the United States, many proponents feel it is in jeopardy because of President Bush's unease with ethical questions about the work. Last year, he limited federal funding to about six dozen existing stem cell colonies and declared his support for federal legislation outlawing so-called therapeutic cloning, which involves the creation of human embryos using cloning techniques to develop a source of genetically matched cells for medical treatments.

Fearful that the effort to pass a federal ban might succeed, state Sen. Deborah Ortiz (D-Sacramento) sponsored the stem cell bill to make clear that California intends "to lead the way in this next frontier of medical research." She and Davis envision flocks of prominent scientists streaming to the West Coast to pursue an array of medical breakthroughs.

"This sends a message not only to Congress but other states: California believes this is important to do," she said. "Here is a model."

Because stem cell research involves reproducing an individual's own cells, proponents say it offers the promise of treating or curing a wide range of ailments, including Parkinson's disease, diabetes and cancer.

Bush and many religious conservatives oppose research on the tiny cells extracted from 5-day-old embryos because, they say, it involves the destruction of a nascent life.

In several significant ways, California leaders are actively encouraging stem cell research. The new measure, for instance, provides guidelines to fertility clinics for donating leftover embryos from fertility treatments to scientists, who could then extract stem cells from them.

Most clinics say they currently throw out embryos that couples do not need, generally because some couples who have conceived a child do not plan any more pregnancies.

The California measure does not permit "reproductive cloning" -- the creation of a genetically identical child -- and includes strict oversight of stem cell research.

Davis is expected to send a letter to more than 10,000 scientists inviting them to submit research proposals to the state, according to sources in the patient and research communities. The governor, who is seeking a second term, has scheduled a conference call for today with prominent researchers and activists, such as Christopher Reeve, to make the announcement.

"We are extremely heartened that Governor Davis and California would take such a bold step," said Michael Manganiello, president of the Coalition for the Advancement of Medical Research (CAMR). "We hope it encourages our senators and congressmen in Washington to seriously consider" supporting similar federal legislation.

White House officials did not respond to phone messages seeking comment last night.

This spring, Congress was stalemated over two opposing stem cell bills.

On the one side was legislation written by Sen. Sam Brownback (R-Kan.) that would have prohibited therapeutic cloning and would have criminalized the importation of cures derived from the process. Under the bill, patients who receive treatment through therapeutic cloning overseas could be prosecuted upon their return to the United States.

At the other end of the spectrum was a bill sponsored by a pair of Republican senators and a pair of Democrats that mimics the California legislation to permit the research. Sen. Arlen Specter (R-Pa.) hopes to revive the effort in a Senate hearing this week.

Ortiz said she first became alarmed over the future of medical research when Bush announced his compromise in August 2001. But the real impetus for her bill was fear over the Brownback legislation.

"I was, quite frankly, shocked by the risk associated with halting innovation and science," she said yesterday. "It was going to be a disaster for the nation."

It is unclear what would happen to the California law if a federal ban was enacted. Ortiz said legal scholars believe it might be possible to receive an exemption from any federal ban or to challenge a federal law's applicability on state constitutional grounds. California already has stricter pollution regulations than the federal government, she said.

One leading stem cell researcher, noting the limitations of the Bush stem cell policy, called the California action a "giant step forward."

"This is research that is in danger of not being allowed at the federal level," said Stanford University scientist Irving Weisman, who has a financial stake in two companies that conduct research on adult stem cells.

"California has put its stake in the sand and said this is not only the kind of research we encourage but hope to also fund." © 2002 The Washington Post Company

* * *

Designer Baby To Have Perfect Hearing

0.html <- - address ends here.

A Melbourne couple have won the right to create a designer baby with perfect hearing.

Both carry a rare defective gene so have a one-in-four chance of their child being born deaf if conceived naturally.

Victoria's IVF regulator has ruled the couple's doctors can screen three-day-old embryos to weed out those carrying the defect.

Furious medical ethicists say it opens the floodgates for designer babies selected for gender, high IQ, good looks, athletic prowess or sexual orientation.

Only embryos found not to carry the faulty gene will be used.

The woman is expected to begin IVF by Christmas.

Doctors believe it is the first time in Australia a couple will have used embryo selection to create a child with perfect hearing.

Infertility Treatment Authority chief executive Helen Szoke said Monash IVF had notified its intention and been granted permission.

"The couple are thrilled that the ITA have given the go-ahead," Monash IVF director of molecular genetic services Dr David Cram said yesterday.

"And we're pleased that we can help the couple.

"Monash IVF have the test ready to go, and hopefully they have a good outcome." The couple, who do not want to be identified, are both carriers of a rare mutation of the connexin 26 gene.

Children who inherit two copies of the faulty gene will be born deaf.

Ethicist Nicholas Tonti-Filippini said the decision discriminated against deaf children and paved the way for screening against other babies deemed less than perfect.

"They're basically excluding deaf children, which doesn't seem to be a valid reason for saying someone should not be (allowed to live)," Dr Filippini said. It would lead to doctors being allowed to select on the basis of gender, sexuality, intelligence, or other physical or behavioural characteristics, he said.

GeneEthics director Bob Phelps said while the intentions of the decision seemed good, he also feared its implications for future embryo selection.

"It opens the gates to other types of selection which are not desirable, like the case in the US where the people wanted a child that was deaf," he said.

"There's been discussion about selecting for musical ability, high IQ, avoiding the so-called gay gene, or elite athleticism." But Monash IVF medical director Professor Gab Kovacs said the ruling showed yet another way IVF could be used to reduce people's suffering.

"It's a win for the child because it won't have a hearing disability," he said. "And it's a win for the parents because they've obviously made a decision they don't want a hearing-impaired child.

"We believe it's the first time it's been done in Australia. We don't believe anyone else can do it." The pick-an-embryo technology, called pre-implantation genetic diagnosis, was perfected by scientists at Monash IVF and is now used worldwide.

It combines IVF and genetic testing to avoid major genetic abnormalities or diseases.

Doctors fertilise several eggs with sperm to create embryos, which are screened for the faulty gene once they are three days old.

Couples in Victoria are already using the embryo screening tests to avoid having babies with autism, cystic fibrosis and Huntington's disease.

The revelations are in the ITA's interim policy into how the controversial technique should be used.

The new policy states: Couples cannot select babies with socially desirable characteristics such as eye or hair colour.

Doctors cannot agree to parents' wishes to select embryos that have a genetic abnormality, such as deafness or dwarfism.

The technique should only be used for conditions or abnormalities that will adversely affect quality of life in a significant way.

[Brief Commentary: How is it that it is ok to destroy a human embryo for no particular reason as with typical terminated pregnancies, but it's not ok to destroy a human embryo for some particular reason, like avoiding some genetic disease? To me, this distinction seems not based on ethics or logic, but rather arbitrary if not trendy standards of political correctness. How exactly does it get decided which genetic attributes are "significantly" adverse or not? Do we ask spiritual leaders? Focus groups? Or worse, government experts like the ones who run the NIH? This debate has two highly inflammatory grandparents: abortion and eugenics. . .as if autism isn't already complicated enough. (All questions intended as rhetorical, not soliciting answers.) -LS]

* * *

AWARENESS

Autism - The Silent Epidemic

Matthew Developed normally until he was one year and six months old. Then, he stopped communicating. Started screaming. Six months later, Matthew looked just like any other two-year-old, but, as his mother recalls, he would scream out in church and just do things that other people would consider antisocial.

Drinks would be on the table and Matthew would just quench his thirst from any glass. "He has no concept of yours and mine," says his Mom who lives with him in Trelawny and would rather not have her name published. Her son's problem is one of social-adjustment, she says. "He will take other people's things. He does not know danger. He will put his hand into the flushing toilet."

The experience of Matthew's mother is an increasingly familiar one. Michelle Skeete, therapist based at Mico Care Centre in Kingston, states that what she is seeing, in terms of the numbers of autistic children coming in, is an epidemic. It could be about 10 per cent of all new births she says, an amazing and shocking rate for such a small country as ours.

She sees children who display the characteristic repetitive behaviour of the autistic child on an increasingly frequent basis. An autistic child can repeat one activity all day. Flashing, the shaking of the hand in excitement or distress, is also symptomatic. They can scream for hours and frequently do when over-stimulated by sights, sounds and even textures they find offensive or particularly delightful.

In Kingston, another mother, Eulyn Lee, speaks about one of her daughters. who is all of eighteen years old, but who shouts and screams like a two-year-old when she becomes excited about anything. She is accompanied by Mom Eulyn Lee everywhere, for her own safety and protection. Very few understand and are tolerant of the needs of her child. The challenge she faces will be one that many others will have to bear by the time their children pass the three-year age marker.

Locally, autism has become the single greatest disability affecting children and families struggle to meet their needs. And the condition is an epidemic, specialists who deal with them locally say. Autism is a complex developmental ability which typically puts in its appearance during the first three years of life. It is the Result of a neurological disorder which affects the way the brain functions. According t to the centre for Disease Control and Prevention 2001, autism has been associated with between 2 to 6 persons in every 1000 in the population. Autism affects boys four times as often as girls. In 2002, other national sources put that figure at 1 in 250.

Autism affects the normal development of the brain in the areas of social interaction and communications skills. Children and adults usually have difficulty with verbal and non-verbal communication skills as well as social interactions, and leisure and play activities.

The disorder, the experts note, make it difficult for them to communicate with others and relate to the outside world. In some cases, aggressive and/or self injurious behaviour may be manifested. Persons with autism may also display repetitive body movements such as hand flapping and rocking, unusual responses to people or attachments to objects. They may also show resistance to changes in routine .

Individuals may also experience sensitivities to the five sense of sight, hearing, touch, smell and taste. Dr. Judith Tapper, local paediatric neurologist states that the increased incidence of Autism locally has much to do the with greater ability of our doctors to diagnose the Condition. The young patients, she says, present mainly language delays, social and cognitive difficulties, ritualistic behaviour. In her practice, she sees a scattering along the spectrum, ranging from those who are very involved to those with the Asperger version of the condition who function at a higher level. Could there be a connection between the increased incidence of the condition and something in the environment?.

In the United States where the number of autistic children has also skyrocketed, Committee of the House Senate will soon here testimony from scientists from three countries conducting research into possible relationships between vaccines and neurological disorders, including autism.

One line of current research questions whether a mercury-based preservative used for years in children's vaccines weakened the immune systems of some children and made them more susceptible to adverse reactions to the Measles, Mumps, Rubella (MMR) vaccine. Another line contends that the it may be the one-shot combination of the Measles, Mumps and Rubella vaccine which might be causing the negative reaction. The vaccine for measles, mumps and rubella called MMR is given at 12 months and also to females in the reproductive age group.

In yet another theory, researchers of other nations have proposed that there might be a link between the vaccine ingredient thimerosol and autism. Thimerosal is the mercury-based preservative used in some vaccines. In 2001, the American centre for disease control requested that the ingredient be removed, in light of parent's concerns. Here in Jamaica, the authorities have stated their belief that such issues as are being raised abroad will only jeopardise our much valued immunisation programme.

Other scientific research which has stated that there is no link between the MMR, thimeresol, vaccinations and autism are being ignored, they contend. It has been further noted that immunising children is not only a health issue but a matter of sound economics. Every US$ dollar spent on the measles-mumps-rubella vaccine saves US $21 in later health-care costs, the experts say. But, in the case of the MMR is the health of the affected minority being sacrificed for the greater good?

The parents of autistic children want to know. Eulyn Lee, who tries her best to keep abreast of current research says that she is feeling more hopeful now. If autism has an environmental cause, then maybe something can be done to reverse the effects on her daughter, she says.

* * *

Families of Autistic Children in UK 'Not Getting Enough Support'

Families of children with autism are not getting the support they need, according to a new report out for the start of Share the Care Week.

The national charity Shared Care Network is co-ordinating the week in a bid to recruit more volunteers to help support the families of children with autism.

A poster campaign, backed by the Department of Health, will be launched this week urging people to "Give a little time and make a big difference" by becoming a short term carer for a disabled child.

The charity also released a report "Better for the Break" which looked at nearly 300 families of children and teenagers with autistic spectrum disorder (ASD) aged between two and 19 years.

It showed there is an urgent need for more respite services to cover short periods for families who have a child with ASD.

Parents of children with autism suffer from stress and exhaustion, according to the report.

Of the families questioned, 82% said they needed to supervise their child 24 hours a day.

They said their child's condition was often misunderstood and more than half got no regular help from friends and family.

Short break services were shown to help families cope by giving parents a respite from caring.

They also gave children with autism the chance to meet new people and gain new experiences.

_______________________________________________________

>> DO SOMETHING ABOUT AUTISM NOW <<

Subscribe, Read, then Forward the Schafer Autism Report.

No Cost!

_______________________________________________________

* * *

Mother Tells Of Seeking Help - And Diagnosis - For Autistic Son

Concern grew to frustration, which led to confusion. All were experienced by those close to young Tim Chamberlain in the quest to diagnose his erratic behaviors and lack of speech.

His mother, Becky, spoke to a small group of parents and professionals Tuesday night at the Family Learning Center. Her talk was sponsored by the Seneca-Wyandot Parent Mentor Program of the North Central Ohio Educational Service Center.

A Findlay resident, Chamberlain spoke of her experiences seeking help for her son, now a sixth grader, who was diagnosed with autism. Tim developed normally in every way, except for his speech.

"We thought at first that he was deaf," she recalled. "We would say his name over and over and he wouldn't respond." Not finding anything physically wrong with him, their pediatrician recommended that he be enrolled in a preschool program. The Chamberlains enrolled their then three-year-old son in a community-based preschool.

"The first week in October, the director pulled me aside," she told the group. "She had a concern because he was very active."

The director suspected attention-deficit hyperactive disorder.

An evaluation found Tim was a year and a half behind in speech for his age.

So the Chamberlain's enrolled him in speech therapy once a week, for 30 minutes each session.

"By this time, Tim was four," Chamberlain said. "We had missed early intervention altogether." She said that though she would sometimes "beat herself up" over not recognizing the problem earlier. Yet, Chamberlain told them, autism is difficult to recognize.

The community preschool didn't work out, with too much structure in its programming for an overly sensitive child. So Chamberlain tried using a baby sitting service at Owens Community College to achieve the socialization that her son needed.

It was at this time that she learned of the federal mandates in place, guaranteeing help for her son from the public school system. Part of that was early childhood screenings, with multifactored evaluations to see if there were any qualified special programs for which Tim would qualify.

Thinking that there would finally be some help for her child, Chamberlain was looking for an individual educational plan. Instead, she was waiting for nearly a year to hear of help from the school system.

Their recommendation was to place Tim in a cross-categorical preschool class, which included children with many disabilities.

"His teacher was hearing impaired, so they did a lot in sign language," she said. "She also had a very structured class. As demands increased on Tim, so did his bad behavior." During an open house, the teacher pulled Chamberlain aside, asking if a complete physical neurological checkup had ever been done for Tim.

That led to several sessions of testing at the Children's Hospital in Columbus, which resulted in a diagnosis of pervasive developmental disorder.

Chamberlain said that it was one in a number of disorders that fall under the autism spectrum, which she likened to an umbrella. The spokes represent disorders labeled under that spectrum, such as ADHD, obsessive-compulsive and sensory issues. Treatment consists of treating what can be treated, she said.

Chamberlain found much support and help from the Special Education Regional Resource Center in Bowling Green. The 15 centers in the state were set up to help school districts educate disabled children. The provide free training for teachers and parents, as well as an educational materials resource center.

The area resource center arranged to have Tim observed in the classroom, and made suggestions on what to do differently.

"They looked at the behavior and they looked at the surroundings," Chamberlain said. "They determined that he wasn't misbehaving because he was a bad child." Rather, he was being overloaded with sensory information.

"Autism is an imbalance of the senses," Chamberlain said. "All of the information we get from the world, sensory systems must see, feel and hear." She shared some of the at-home helps she has used with Tim, including a surgical brush to decrease skin sensitivity and a notebook kept full of each year's work to point out his needs.

Chamberlain also shared studies she had read, and television specials seen, seeking the cause of autism or the most effective methods of correcting it.

The study of autism has increased markedly since the 1990s, Chamberlain said.

Results have reaffirmed the importance of the individual educational plan, Chamberlain said. Crucial to the success of the child is the partnership of school, family and the medical community.

* * *

Cancer Mom Mobilizes Against Son's Autism

Double Mastectomy is 'Nothing Compared To Coping With The Autism'

Beth Graham, 43, endured a double mastectomy last November after months of chemotherapy reduced the size of a tumor in her ribcage. Her hair has started to grow back, although she will never again have feeling in her rib area or upper arms.

But she said that's nothing compared to coping with the autism her son Harrison, 5, developed two and a half years ago.

"After autism, nothing's hard," she said. "When my son was 21/2, we were playing together and laughing together. All of a sudden (one day), he looked at me and he didn't know me anymore. It's kind of like you have to bury your child, and you're left with this shell. Their whole vocabulary just disappears, and you can't communicate any more. Breast cancer - that's nothing. Get this out of my way, because I'm dealing with autism."

Through her involvement with the National Alliance for Autism Research, or NAAR, Graham hopes to get the word out about what she said is a vastly misunderstood condition.

With Emily Ballard, a special education teacher in her third year at the Parker Road Preschool, she formed the United Families of Shrewsbury this summer. The group will join thousands from around New England in the second annual New England 3.1-mile Walk FAR for NAAR on Sept. 29 in Brighton. FAR stands for Family and Friends of Autism Research.

Ballard walked last year with about seven or eight other Parker Road teachers, raising between $1,500 to $2,000 for NAAR. So far, 26 parents and educators have signed up to join the United Families of Shrewsbury, whose goal this year is $10,000.

Autism is a mysterious spectrum of neurological disorders that, at their most severe, lock victims in their own worlds - and lock families out - by inhibiting a person's ability to communicate, respond to surroundings, or form relationships with others.

It usually appears within a person's first three years. NAAR estimates about 500,000 people in the country currently have autism, which may affect as many as one in every 500 children. It is the third most common developmental disability, after cerebral palsy and mental retardation.

OTHER ADDRESSES:

* SUBSCRIPTIONS: SUBS@doitnow.com

* NEWS: POSTNEWS@doitnow.com

* EDITORIAL: Schafer@sprynet.com

* READERS' POSTS POSTINGS@doitnow.com _________________________________________________________________

Lenny Schafer, schafer@sprynet.com Kay Stammers Edward Decelie

CALENDAR EVENTS@doitnow.com Michelle Guppy Ron Sleith

++ To Unsubscribe, Send an email to unsubscribe@doitnow.com ++