SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

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September 4, 2002 CALENDAR LISTING: EVENTS@doitnow.com

AWARENESS

* Transcript of Recent BBC Coverage Of Autism In California

PUBLIC HEALTH

* Urgent Action Needed To Combat Autism Epidemic

CARE

* Court Rules Mom Obstructed Officer At Store

* Caretaker, Officers Held Liable In Death

* Man Tells Authorities He Killed His Autistic Son Because He Was 'Evil'

* Letter: Coping alone

* Reader's Posts

AWARENESS

Transcript of Recent BBC Coverage Of Autism In California

RICHARD WATSON: Apple Valley, California, in the heart of the desert.

ROBERT SMITH: You walk out here, you don't see street lights, you see stars. Here, it is different. Colder in the winter, hotter in summer.

WATSON: It's an every day trip for glass fitter Robert Smith.

SMITH: You can put glass into anything that moves - from shower doors to store fronts, cars. I've yet to do an aeroplane, but I have done a train.

WATSON: But his journey over the past 30 years has been something of a miracle. At the age of two he was diagnosed with severe autism.

VIDEO FOOTAGE: Hi, Bobby, how are you?

WATSON: This is Robert, aged three. He refuses to make eye contact, a key sign of autism. He appears cut off from the outside world. He is preoccupied with repetitive play, characteristic of autistic children and he has no speech. This is the first time mother and son have seen these images.

GENIA SMITH: It's pretty crazy. But we made it.

WATSON: Back in those days, what problems did Robert have?

GENIA SMITH: He would rock himself and hit his head against the wall, repeatedly. I began to hear some children with autism would wear helmets, to prevent brain damage or whatever. So I kept him out of the crib as much as I could. He had other behaviours. Moving his head back and forth with his hand in front of his face. Making a croaking noise.

WATSON: Repetitive behaviour?

GENIA: Yeah, he would sit and do it, do it.

ROBERT: I don't remember half of it. To me it seemed like a place where I was going to do things. It was almost like school, you know. It doesn't register much, I don't remember feeling any different. It was just a stage in life.

LEIGH: Do that. Yeah! That's what I'm looking for! Do this. Yeah!

WATSON: This is the therapy technique that cured Robert. It's now practised across California.

MILA AMERINE-DICKENS: Leigh is teaching Luke to imitate and perfect imitation skills. She gives a cue, Luke responds and she provides positive reinforcement.

LEIGH: Do this. Yeah! Thank you.

WATSON: Tasks are broken down into simple components. Success is rewarded with praise, such as chips or a drink. It's known as Applied Behavioural Analysis or ABA.

AMERINE-DICKENS: We've had a lot of success stories. Success ranges from children just learning to talk to children now in third to seventh grade, independently without assistance. They're in regular ed without help.

WATSON: The hills above Los Angeles is the home to the man who pioneered ABA for autistic children. For 40 years psychologist Dr Ivar Lovaas has developed the approach at the University of California. SR IVAR

LOVAAS: Imitation is a major learning strategy. Half the kids learn to imitate vocal sounds, like "mama," "papa." Then "mommy, daddy", and then slowly you make it more complicated. It's like an accelerated curve. You take a long time to get to the first sound imitation, then they shoot up like this. So, you can say, "What's your name?" and they can say "Adam."

WATSON: In 1987 Lovaas published the results of research on a group of 19, mostly from around Los Angeles, who'd received 40 hours intensive ABA.

LOVAAS: At the age of seven, 47% of them scored within the normal range, or the typical range on IQ tests and were in first grade unassisted. We tested them again when they were 13, as adolescents. The best outcome group maintained again which surprised me. I thought it really meant in those first years that we had them in treatment they learn how to learn.

NEWS REEL: Marty, touch your nose. Good boy.

The ABA team at the university of California had to swim against the tide. Many of LOVAAS' rivals believed autism was created by a cold mother-child relationship, and as such was treatable with Freudian psychoanalysis. That's now discredited but some researchers still argue against intensive ABA. This is the alternative, the classroom based approach. Ivy and Jared spend all day in class together with other autistic children.

TEACHER: Catch the spider.

WATSON: Along time rival of

LOVAAS believes this is the best model. He says that 40-hours of intensive one-on-one therapy can actually be damaging.

DR EDWARD RITVO: Children with autism need other things be sides one-on-one relationships. They need to play and to be kids. They need social reinforcement. I've seen kids who have been placed in this treatment 40, 50 hours a week, day after day, week after week, and they lose out on the part of their personality that could develop and become more social.

WATSON: Now LOVAAS says the technique is not effective unless have you something like 30 or 40 hours intensive ABA per week. What do you say to that?

RITVO: With two or three hours a day, four or five times a week, we seem to reach the maximum effectiveness.

LOVAAS: There are no data to suggest that two or three hours a day is effective. The easy thing is to say, "Oh no, your child needs... is to be stressed now, only need two or three hours a day and then play with other kids." They don't learn anything by being with other kids. We know that for a fact. You put a class in a normal class, if he doesn't learn the basic skills he will stay the same.

WATSON: ABA is not for everyone. Standards of treatment can vary. Jared's parents tried it at home with a team of

THERAPISTs. Their son made little progress.

JASON ELKIN: The things you hoped to see such as increased eye contact, more self awareness, decreased aggression, we were not seeing. That he was non-responsive when it came to that treatment. Truly it was after we took the somewhat unusual step of wiring his room with video to watch the therapy that we were aghast at what we saw.

THERAPIST: Clap your hands. I don't like. I don't like that. Clap your hands.

JARED SCREAMS

WATSON: Jared cries as he fails and fails again

LOVAAS' own data shows that a minority of children don't respond, even to the best ABA and much depends on the quality of the therapy.

THERAPIST: You need to listen. Stand up. When I say stand up, you stand up.

WATSON: Dr

LOVAAS acknowledges that the majority of

THERAPISTs fall short of his standards. His critics argue that ABA is overused and overhyped. Despite the controversy, there is a growing body of evidence in California that early intervention does work actually work if it's intensive and early enough. The crucial question is what the state believes is the best way forward. I have come to meet the man in charge of the $1.8 billion budget for autism. California's Department of Developmental Services enjoys a big budget for disabilities guaranteed under state law. The state's most senior psychologist says he is ready to embrace a radical new policy on ABA.

DR RON HUFF: ABA definitely works. It probably has more science behind than any other approach. I think every child should be given the opportunity to find out whether or not that child can respond to ABA. Now, some children...

WATSON: That's significant. That's a big financial resource?

HUFF: It is. It is, but we are looking at a lifetime of developmental problems if the child does not receive.

+Article continues at:

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PUBLIC HEALTH

Urgent Action Needed To Combat Autism Epidemic

[By Bernard Thompson.]

Urgent action is now required to address a national emergency affecting 20,000 British children with autism.

That is the message from Action Against Autism founder, Bill Welsh, after the latest scientific tests revealed measles virus in the blood of some autistic children.

Innovative DNA tests, carried out in Dublin, known as TaqMan PCR, indicate that the measles virus gene is present in some autistic children who have had no other exposure to the measles.

That has prompted researchers and campaigners to call for further testing to establish a possible link with the controversial MMR vaccine.

Speaking to the Voice on Monday, Mr Welsh insisted:

"It is absolutely vital that the government takes immediate action to blood test every child diagnosed as autistic since MMR."

"That is the only way to establish whether measles virus is implicated in the epidemic of autism. This is a national emergency."

The findings could prove to be of profound significance in the treatment of autism and in the campaign to have single vaccines for children made available across the board.

Bill is adamant that an alternative to MMR must be offered

immediately:

"It is my understanding that up to 500 children with autism will be tested for persistent chronic measles virus in their bloodstreams, gut and lymph nodes as part of a legal action currently taking place in London.

"It is vital that single vaccines are offered as a choice while tests are carried out."

Bill has been inundated with calls from parents, desperate to have their autistic children checked for traces of measles virus.

If the measles virus can be proven to be a factor in children developing autism, it would contradict conventional medical opinion in this country that has, as Bill explains, adhered to the traditional model of the disease, focusing on genetic and psychological factors.

Mr Welsh is clear in his opinion of the British medical response to autism. He said: "The hierarchy of the medical profession has been incompetent in dealing with this human tragedy."

But Bill, whose seven year-old grandson, Luke, was diagnosed with autism at three years old, sees the latest findings as offering a glimmer of hope that progress can be made.

He is determined to see positive action taken in response to the prevalence of autism in the UK: "This offers the potential for at least one avenue of treatment of the disease.

"Autism is being treated elsewhere and these treatments must be brought here.

"It is vital that we stand up and be counted."

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CARE

Court Rules Mom Obstructed Officer At Store

Julia Munger, a Clayton County mother of an autistic son, was found guilty Friday of obstructing a police officer who was chasing the son through a Publix supermarket.

Munger had insisted she was trying to convince the officer that her 24-year-old son might run into traffic outside if the pursuit did not stop.

The jury found Munger not guilty of two counts of battery on the officer. With the one misdemeanor conviction, she could receive a year in jail and a $1,000 fine.

State Court Judge John Carbo will sentence her Sept. 6.

Munger said she hopes she will be permitted to perform community service.

"I could work in the community for the mentally ill," said the Forest Park resident, who works as a foster parent for disabled children and young adults.

Jail time is unlikely in the case of a first-time offender responsible for an autistic son and an autistic foster daughter, a former State Court prosecutor said.

"It would be very, very unusual -- out of the norm -- to put her in jail," said Ben Smith Jr., former Cobb County solicitor.

The case has attracted the attention of advocates for families that deal with disabilities. They say it exemplifies intolerance of disabled people in public places.

The mother said her main regret is that much of the testimony in the four-day trial focused on her son, Billy Munger, who did not appear in court.

Clayton Solicitor Keith Martin grilled Kathy Gordon -- Julia Munger's autistic foster daughter -- on Billy Munger's behavior at home and school. He asked Gordon if Billy Munger had been restrained at the special school they attended, if he had caused damage, thrown things or spit at people.

"I didn't think he would go so far as to talk about my home," Julia Munger said Friday.

Kathy Gordon's mother, Shirley, was incensed at the line of questioning. "She's very emotional and she's like a brother to Billy," Shirley Gordon said.

But Leon Hicks, Julia Munger's attorney, said he understood that the solicitor needed to show Billy Munger's instability was the trigger for his mother's action.

Martin explained: "We anticipated from the beginning that he was going to be used as the justification [for obstructing the officer], and indeed he was."

The Georgia Advocacy Office, a nonprofit agency that works for the disabled, had pressed Martin to drop the case.

"A jury's verdict deserves respect, but I think this case underlines the need for emergency workers to receive appropriate training on interactions with persons with disabilities," Advocacy Office attorney Bob Raubach said Friday.

Officer Shannon Stroup defended her training. She was struck in the mouth by Billy Munger the moment she approached him.

"If I had to do it over again, I wouldn't change a thing," she said. "I handled the situation the best I could."

A State Court jury spent four hours deliberating four days of testimony.

The incident at the Mount Zion Road Publix occurred on a busy Sunday evening when Billy Munger left his mother's side, and for some unknown reason, began cursing alone in the men's room.

Store managers called police. Billy Munger bolted as soon as he saw Stroup.

Witnesses said Stroup had no way of knowing of the man's autism.

Over the next 10 seconds, store workers testified, the mother pulled on Stroup's arm and blocked the officer's path, sometimes pushing with her hands.

Billy Munger was not charged.

The officer's lip was swollen from Billy Munger's blow; her arm bruised by Munger's grabbing, prosecutors showed.

The day of the incident, Munger was charged only with the obstruction count on which she was convicted. She was given a citation and was not jailed.

Martin added the two additional charges six months later, after Munger granted newspaper and TV interviews.

After taking a couple of hours to compose herself Friday evening, Munger was ready to keep speaking.

"I go on because of my son," she said. "Billy is such a wonderful, sweet, caring person. He's just been so attentive to me this week. He was just hugging me when I got home."

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Caretaker, Officers Held Liable In Death

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A federal jury here awarded $4.4 million yesterday to the family of a man with autism who died in a scuffle with Metro police officers, saying negligence by a caretaker and excessive police force led to his death.

Calvin Champion, 32, died April 30, 2000, outside the Babies R Us store at 5731 Nolensville Pike after police were called by Champion's weekend caregiver, Jolene Delelys, an employee of Outlook Nashville, which operates group homes for people with disabilities. Delelys told police that Champion had become agitated and had torn her shirt.

Champion was restrained and put face down on the ground by officers. He asphyxiated and died, the family's lawsuit states.

"We asked the jury to send a message to the community of the value they placed on human life," said the family's lawyer, Chicago attorney James D.

Montgomery. "We asked them to send a message to the community that excessive force in a police arrest won't be tolerated." Montgomery, a partner in Johnnie L. Cochran Jr.'s law firm, said the amount of the award was an indication that the jury was "outraged." Champion's sister, Jetonne Champion-Collins, of Nashville, could not be reached for comment.

The jury found Outlook Nashville and Delelys jointly liable for $3.5 million in damages, saying Outlook had failed to properly train Delelys. It also agreed with Champion's family, which said Delelys had failed to inform police officers that Champion was mentally disabled and required special care and treatment.

Champion lived in a group home operated by Outlook Nashville.

Efforts to reach Delelys last night were unsuccessful.

D. Edward Harvey, who represented Outlook Nashville and Delelys, said the verdict was not "supported by the evidence presented at trial."

Harvey, with Farris Mathews Branan Bobango & Hellen in Nashville, said his client would appeal the verdict.

Metro Officers Debbie Miller, Craig Dickhaus and Richard Woodside each was found liable for $300,000 in damages. The jury agreed with the family's lawsuit that the officers improperly restrained Champion, then failed to provide medical care when he was in distress.

The officers were represented by the Metro Department of Law, because they were named as defendants in their official capacity.

Karl Dean, Metro law director, said the city would review the verdict and had not made a decision on an appeal.

"We are disappointed in the verdict, and we disagree with the verdict," Dean said. "Police investigated this when it first happened and found all the officers acted appropriately." An autopsy found lack of oxygen, breathing some of the vomit into his lungs and a previously undiagnosed heart condition all contributed to Champion's death, which was ruled accidental.

Champion's family, however, maintained that his death could have been avoided if Delelys and the officers had responded more appropriately.

According to police accounts of what took place, officers responded to a 911 call from Delelys outside the store. Champion lunged at Miller when she arrived, police said, upon which she pepper-sprayed him and he ran back into the store. After two other officers arrived, they said, Champion lunged again at Miller, grabbing her by the throat. Champion was pepper-sprayed again, they said, and the officers wrestled him to the ground and handcuffed him as he lay face down. A cloth strap was tied around his ankles to keep him from kicking, police said. Champion vomited, they said, and paramedics were called. The paramedics asked for the handcuffs to be removed and rolled him onto his back to perform CPR, police said, but his pulse became weaker. He was pronounced dead at Southern Hills Medical Center.

Delelys' poor training, Montgomery said, resulted in her failing to act properly when officers arrived at the scene. She left Champion "in a world that he didn't understand and that didn't understand him," he said.

After officers took Champion to the ground, Delelys should have explained that Champion "did not understand who (the officers) were or what they were saying. He couldn't tell them he couldn't breathe." Montgomery said the officers acted appropriately until Champion was on the ground. At that point, he said, they improperly "sat, kneeled or laid on him for seven to 10 minutes" and failed to turn him on his side to allow him to breathe properly.

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Man Tells Authorities He Killed His Autistic Son Because He Was 'Evil'

AP - The man accused of killing his autistic, disabled son told authorities he attacked the boy because he was "evil."

Raymond Boothe, 34, of Cameron, Mo., has been charged with first-degree murder in the death of his son, Raymond Levi Boothe, 11. He's accused of stabbing the boy with needle-nosed pliers in a ditch along Interstate 70 in Leavenworth County. Authorities say the boy, dragged back to the side of the highway and left to die, was later hit by another vehicle.

The boy had tuberous sclerosis, a genetic disease that left a rash on his face and malformed his brain. He was also a mute and wore leg braces.

"He said he was evil, had the devil in him," Leavenworth County Sheriff's Maj. David Zoellner said Friday. He said Raymond Boothe said, "I had to rid the family of him." An Oct. 3 court hearing will determine whether Boothe is mentally competent to stand trial.

Boothe also said he was angered that the boy supposedly made an obscene hand gesture to him, Zoellner said.

Boothe was arrested later in Lawrence after his vehicle crashed. Lawrence police Sgt. Mike Pattrick said Boothe was trying to kill himself and his other three children, who were treated for cuts and bruises and placed in the custody of the Kansas Department of Social and Rehabilitation Services.

Zoellner said Boothe has admitted attacking his son. Boothe also said he was angered that the boy supposedly made an obscene hand gesture to him.

The boy had lived in a group home in Creston, Iowa, for five to seven years, Zoellner said.

He said some clothing and a leg brace with the initials "LB" were found in a yard at a home in Kellerton, Iowa, near the border with Missouri. Zoellner said investigators did not know how the clothes got there, or why the brace had been removed.

Lisa Boothe, 31, went to police Tuesday evening after learning her husband had driven to Creston to pick Levi up from the group home.

The boy's body was found about 9:30 p.m. Tuesday along the shoulder of the turnpike's westbound lanes about a mile east of the Douglas County-Leavenworth County line. The discovery was made after the Leavenworth County Sheriff's Office received an anonymous 911 call reporting a pedestrian being struck.

About three hours later, Lawrence police were called to an injury accident.

When they arrived, officers found Raymond Boothe walking away from the crash scene with his two daughters, 6 and 9, and a son, 7.

The car Boothe was driving went airborne, crashed through fences, struck trees and rolled, landing upright, police and neighbors said.

Boothe's court-appointed attorney, Gary Fuller, did not immediately return a phone message from The Associated Press.

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Letter: Coping alone

[This letter arrived about three weeks ago. It was queued for publication then, but is only now being so posted. It is unrelated to the article above. –LS.]

I am saddened to read about the murder/suicide in a recent SA Report.

I confess I know the feeling, I have come close to such thoughts myself; only my strength of will keeps me focused.

My son has Asperger's Syndrome, he looks outwardly normal, but his mood swings and violence fill me with despair, I dread testosterone kicking in, and fear for the future.

His father has nothing to do with him, since he was one year old, when our relationship ended.

I have not had a successful relationship since, no-one can stand Andrew's behaviour, social events are a no-no, unless you enjoy the disruption, etc.

My older son moved out last year, he was just 17 and he moved in with his older, married sister.

They are Andrew's half-siblings, from my marriage, which ended in divorce 17 years ago.

Andrew is my whole world; I have no social life, just the computer, as there is nothing I can do during the day when he's at school.

He attends a special school in the neighbouring town.

He travels by taxi in total silence, his escort has never heard him speak. His teacher says he is a model pupil, yet when I get him home he's a total monster.

I am not allowed to make/receive phone calls or have visitors while he's here.

I am entitled to respite care from my social services but two placements have broken down and there is no-one queuing up to look after him.

I have days when I despair so much; I fantasize about walking in front of a bus or jumping in the river.

What I wouldn't give for a hug some days, it's all the worse because I am a tactile person.

My parents are in their 80's, I visit them once a week with my son. They can only take his behaviour for a couple of hours and always appear relieved when I leave. Last week Andrew kicked my mother and caused my father to fall over.

He is now approaching 10 years old and he is as tall as my shoulders. He is so strong he can pull me over.

I am dreading the teenage years, I am not in the best of health myself, I've got arthritis and osteoporosis in my neck, and Andrew loves to grip my neck and pull my head down. That's if he's not yanking out clumps of my hair.

I am not looking for advice or sympathy, if anything I am adding to the voices already who have expressed sympathy with the man who shot his autistic son then took his own life.

I don't know if I will ever get that desperate, but I do know there is no doubt we will go together, my faith will not reconcile me taking a life or my own, but faith wears a little thin during long, lonely nights crying oneself to sleep for want of someone's arms around you.

Annie Ogle annieogle@yahoo.com

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Readers' Posts

[Editor's note. The following posting are two to about three weeks old. They were electronically misfiled and are only now being posted. Some posters may already have answers, but we're not sure which and we didn't want to wait a few more days to find out. So here they are. Tomorrow, we will be listing the posts from two weeks old to current. –LS.]

For Lu Carpenter, SF: This is the first time I have seen the subject of pulling out eyelashes anywhere. Makes me wonder how many do this. My daughter does and has for years. She says her lashes cause stinging and have split ends. In order to stop the "stinger" as she calls them, she pulls them out. I have taken her to several types of doctors but no one seems to understand the cause. If you find out anything, please let me know. My daughter is classed as High-Function Autistic; with other

diagnoses as well She is now 27 and still pulls out her lashes. One of her

doctors just changed her meds from Zyprexa to Seroquel. dyhouse@nemr.net

Margaret

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We are moving to San Diego from Phoenix in a few short weeks and desperately want to hear from other parents in the area. Our son is 12 and going into middle school this year. My husband will be working in Rancho Bernardo but we would locate anywhere the schools are best. Any advice or information would be greatly appreciated. Linda gastenedgar@cox.net

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Anyone who might have information on any case law that awarded parents lost wages for having to reduce work hours because the school would not do an ABA program with their child. Also ay case law on parents being paid for doing the therapy themselves because they could not afford to pay someone else to do it. Any lost wage reimbursement would be helpful. Lisa tablack@attglobal.net

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I have tried to fight the system in NC, with no luck, I have decided to do the two immunizations my daughter needs. One of them is a DT (adult dose of tetanus). Her pediatrician is having a hard time locating Thimerosal free Tetanus. Does anyone know who makes it and where to locate it? Kathy Hudson jhud2@earthlink.net

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Part time assistant needed -- must be comfortable working with children with autism and behavior challenges, must have very flexible schedule, required to work 3-5 consecutive days once or twice a month, travel away from home required for the 3 - 5 days, help needed in a variety of locations, seeking one person to assist with all locations, including Ca, Va, NJ, Pa, Wi, and Fl. Travel and expenses are covered, salary commensurate with experience and flexibility of time. Contact terries@execpc.com and include a description of your experience and time availability. You need not live in any of the above mentioned states to fulfill this position.

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Would like feedback on results of Zoloft (Sertraline) in HFA pre adolescent females. Any information would be appreciated. Dealing with impulsivity, anxiety, fearfulness. Very verbal. miamishooves@hotmail.com.

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Looking for a speech pathologists in Livingston,Texas to work with my 8 yo nonverbal son. Willing to drive 2 hours or more either direction. He has used PECs for 4 years & has very little language. He is VERY frustrated with both communication systems. I need someone familiar with AAC. We have medicaid & are looking for a speech path to recommend a device & help teach it. Tracy Blalack tui@livingston.net or call 936-327-4752

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Looking for any information linking autism and autoimmune disorders such as an autistic child with juvenile rheumatoid arthritis, lupus, or connective tissue disorder. Also looking for other input from parents whose autistic child has had joint pain and successful strategies in dealing with it. Please contact Christine at tyjustinandchris@aol.com

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If anyone has any cautions regarding craniosacral treatment for my high-functioning 3 y/o ASD son please e-mail me privately please at weissteach@hotmail.com.

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New MSN group for parents with special needs children of the LDS faith- run by LDS mothers. We are small so far, but growing! Community chat room and message boards divided by category (i.e. autism, FHE, Cerebral Palsy,

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Hello! My name is MJ. I’m ten y/o. I'm a fun guy! I like to eat "kool" foods. I like cartoons, video games, reading, and telling jokes! I love computers and roller coasters! I need someone trustworthy and fun to work and play with after school. Make a Difference in Orange Co., NY - and Receive Competitive Salary! E-mail: wbwandabrown@netscape.net

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My family, including our 9-year-old son with Asperger's, is facing a sudden move to Indianapolis. We need to gather information on school districts there and in the surrounding areas before making a decision about where to live. Are there districts with good special ed programs in general? For autistic spectrum kids in particular? Are there nightmare districts to be avoided at all costs? Does anyone have a recommendation for a good developmental pediatrician in either Indianapolis or Bloomington? lizf@frnoakland.org

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I have friends who are adopting an autistic 5-year-old girl. They will be in Portland for about 6 months while the child undergoes hip surgery and recovery. They would like to know of any other services that might be available in the Portland area: speech, ABA, anything. Reply to secexch@aol.com

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My husband is considering applying for an overseas assignment, probably in the Middle East. Does anyone know the availability of special education in American Compounds in foreign countries for autistic children of oil company employees? gertrudmic@aol.com

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