Schafer Autism Report, Tuesday, July 08, 2003

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Now, I hear you’re fairly proud that your room’s very different to the others in the family.

TARA BROWN: It’s pretty bright. The further you go into Kingsley’s domain, the more you get to know him. It’s a place of mysteries and contradictions. For instance, while Kingsley has difficulty communicating with me, he can design quite elaborate computer games. And he’s very determined about what he likes and what he doesn’t. At the moment, his pet hate is electronic gates.

KINGSLEY: I didn’t like things that block the drive and open and shut at the push of a button. So obviously I get jealous of them. When Mum threatened to put one on the driveway, I was going to destroy it.

ALEX DEEN-COWELL: (Speaks Japanese) The first sentence, “Even though I have a disability, I still manage to enjoy every day.”

TARA BROWN: Alex Deen-Cowell is 16. He’s a charming and gentle boy whose particular skill is Japanese, a skill that’s become an obsession.

ALEX DEEN-COWELL: It’s about a Japanese man who is born without arms or legs. I think it was congenital tetramedial, it said. I find it very interesting because … I kind of relate to this because it reminds me of my own struggle through life.

TARA BROWN: And with Alex, there are those contradictions too. He’s in the top 10 to 20 percent of his class, but his parents Tracey and Jeff still battle to understand his thoughts and his feelings.

JEFF COWELL: I often say I’d give anything to have 24 hours in there just to see what it’s like.

JEFF COWELL: You know, the nearest explanation I’ve had to it is somebody saying that the average level of stress of a kid in school with Asperger’s Syndrome is what other people experience when they’re prepping for an exam and they’re walking into the exam room, they know they’ve got that exam confronting them. That level of stress is what these kids endure every day. It must be horrendous.

TARA BROWN: Kingsley’s mum Emily is a doctor and the family lives on Sydney’s north side. He’s very intelligent. In Year 10, he was already a whiz at university standard maths, but currently, he’s working part-time in a printing shop. How easy is it for you to understand how people are feeling about you?

KINGSLEY: It’s hard to say sometimes, because I often lack the thing of reading emotions, so it can be difficult sometimes.

KINGSLEY: Not very easily. I don’t know, it’s just transparent, I don’t see them. I don’t see the emotions, I don’t see anything.

EMILY: Every little thing has got to be learned. He’s currently going through social communication skills, classes, to teach him to learn to recognise how people behave and how he should behave in return. So everything has got to be learned.

TARA BROWN: So are you talking about even learning to smile in response to people?

TRACEY COWELL: There’s times when we sit down and cry, we absolutely bawl. I mean, he ... it really tugs at your heart to know that there’s a limit to what you can do to prepare your son for the world.

TARA BROWN: For his parents, it’s obviously a trial. But the disarming thing is that Alex himself is so calm, so matter-of-fact about his disability.

ALEX DEEN-COWELL: I still manage to get the most out of my life even though I have this disability.

ALEX DEEN-COWELL: Sometimes, but there are some merits of it that I feel proud of having.

ALEX DEEN-COWELL: My dedication to my Japanese studies I really value. Without this disability, I probably wouldn’t have gone as far as I would have.

TARA BROWN: You can understand why many people would see Aspy’s behaviour as odd. Kingsley loves trains, but not all trains. And he has his own personal catalogue of train sound effects. Would you like to be able to stop making these noises?

TARA BROWN: If all this seems vaguely familiar, you’re probably thinking about Dustin Hoffman in Rainman. His character showed all the signs of Asperger’s, but back then it didn’t really have a name, it was just classed as a form of autism.

DR TREVOR CLARK: It occurs in about one of 200 births, but it’s much more common than we first believed in the population.

TARA BROWN: Dr Trevor Clark is Director of Education and Research at the Autism Association of NSW. He says the word Asperger’s only became common in the ‘90s, even though the problem was first diagnosed 60 years ago.

Before we knew what to call it, what would all those people with those symptoms be thought of?

DR TREVOR CLARK: I guess in their school population they would have been considered to just have behaviour problems and would have been dealt with accordingly. As adults, I believe many would have been classified as having a mental health issue and were probably institutionalised.

TARA BROWN: As I found, it takes a lot of effort to get to know an Aspy. But Alex does have one close mate, his nine-year-old brother Nicholas. Because they can be very single-minded, Aspys often don’t have friends their own age, but it’s not uncommon for them to relate to sympathetic younger or older people.

ALEX DEEN-COWELL: We had a sleepover party I had in Year 7, that was the last time.

TARA BROWN: Talking to him, you get the feeling that he really wants to get the message across that he’s different but not that different, that he’d love to have a friend.

TRACEY COWELL: You’ve hit the nail on the head, that’s what it is. It’s the needing and the wanting without the wherewithal to do it.

KINGSLEY: I love but I have no sense of love, I don’t know how to make love. So essentially love is ruled out. Love is an emotion I don’t know. It may come to everyone else, but I have no emotion of love, absolutely none, because I don’t know how the system works.

KINGSLEY: Not really, I don’t care. I don’t care about love because I haven’t any experience of it, there’s no need to turn it on. EMILY: It took a long time for me to be able to touch him and do this. He used to shy away every time, up to about the age of, I would say, early teens, when you do that he would pull away. He doesn’t like being touched.

TARA BROWN: However, Kingsley too has a special friend, someone he’s allowed into his life, 10-year-old Alex from up the road.

ALEX: Well, he looks like a teenager but he doesn’t act like one, which I like about him, because otherwise he’d be smoking and wouldn’t build stuff so creative and fun.

TARA BROWN: Now, Kingsley was telling me that people his own age think he’s pretty weird. Do you think he’s weird?

TARA BROWN: One thing I’ve learned is that many Aspys do have significant skills and if their talents are nurtured, they can go on to great things. And that’s what these classes are all about, starting with the basics. There’s also this, a technique called applied behavioural analysis and it’s having dramatic results. Ten-year-old Finley Harris, for example. He was diagnosed as severely autistic when he was still a toddler but he’s now active, bright, a fun little boy. For Kingsley and Alex, though, you just know life is going to be a very tough journey, full of slights and intolerance. But while the world might still see them as peculiar, it’s heartening to see that at least the people who really matter know better.

TRACEY COWELL: He’s not a job, but it’s something that you want to do the best you can. You strive for that because he means so much.

ALEX DEEN-COWELL: Yes. I am. I am happy in myself. But my only problem is that I just wish other people would accept me as an equal.

TARA BROWN: They live in a world of their own, a world that can be bizarre, sometimes even frightening. Not all that long ago, they may have been branded as deranged and carted off to asylums. Now, at least, we know they’re suffering from Asperger’s Syndrome, a form of autism. Aspys, as they’re called, are often kids with learning difficulties. Some live in a kind of emotional cocoon. They’re prone to odd and disturbing behaviour and yet can have flashes of pure brilliance. And the surprising thing is it’s not all that rare. One in every 200 Australian children is an Aspy. This is a rare privilege, an invitation into Kingsley’s personal kingdom.

KINGSLEY: I’ve got windows this side, have a look through the window this side.

TARA BROWN: Okay. It’s a world inhabited by him and him alone. A world outsiders like you and me might find strange and even a bit frightening.

[Pitting Special Ed against regular Ed: “Special Ed growth is killing us!” is an ever increasingly heard lament. By Robert Digitale In The Press Democrat, Santa Rosa, California.] http://www.pressdemo.com/local/news/06schools_b1empireb.html

California) has doubled in four years, prompting school officials to raise questions about the agency governing special education funds in Sonoma County.

The Santa Rosa Board of Education plans to spend $8 million from its general fund on special education programs this school year, up from $4 million in 1999.

The cost is expected to rise nearly $800,000 from last year, even as board members cut other programs by $9.5 million.

Officials from other school agencies say the increase is hardly unusual and blame the federal government for failing to pay its promised share for educating disabled students.

But Santa Rosa board members say they want to know whether the county’s Special Education Local Plan Area agency, or SELPA, is properly containing costs and fairly dividing the available money among the county’s 40 school districts.

“We need assurance that the funding model for SELPA doesn’t penalize large districts,” Santa Rosa board member Frank Pugh said.

Special education programs educate about 9,200 of the county’s 73,000 public school students. The students include those with physical and mental disabilities and emotional problems. Most students fit into two categories: learning disabilities and speech or language impairment.

Few issues in public schools have produced more complicated rules and more tension than special education.

Parents complain that too often they must invoke formal complaint procedures and seek due process hearings to obtain the services to which their children are entitled by federal law.

School officials and teachers complain the law sets high standards for serving students but the federal government hasn’t provided the money needed to achieve the goals.

Santa Rosa, the county’s largest district, plans to spend more than $22 million of its $118 million budget this year on special education programs.

Most of that money is provided by special state and federal programs, which are in addition to the district’s general fund expenditures.

The special education programs are expected to serve nearly 2,300 students, an increase of about 6 percent since 1999.

By law the county’s special education agency divides state and federal money among the school districts. It also negotiates costs for companies and public agencies that provide busing and instruction.

School districts can choose to run their own programs or to use the outside agencies, including the main provider, the Sonoma County Office of Education.

Santa Rosa officials raised concerns about rising costs and the work of the special education agency earlier this year during budget hearings.

Last month, when asked for a needed approval to a proposed change in the agency’s operation, the board declined to act.

The proposal, which would have given the agency’s ruling superintendents council new power to set managers’ salaries, was effectively vetoed because under the agency’s rules every county school district had to give its blessing for it to take effect.

Bennett Valley School District Superintendent Sue Field, who is chairwoman of the superintendents council, said she wants to directly hear Santa Rosa’s concerns about the agency’s operations.

But she maintained that the council has been working hard to address the thorny issues of cost containment and the fair distribution of funds.

“There are going to be winners and losers in any scenario because there’s not enough money,” Field said.

He said districts are fast approaching the time when they must cut their regular programs to maintain the level of service for special education students.

Autism: Is This The Cause? - Why the vaccine banned in America is still being used here

A Midland mother is campaigning to ban a mercury-based preservative from being used in child vaccinations -because it has been linked to autism. Claire Bothwell, originally from Coventry, has led a battle in the US against Thiomersal, a compound 50 per cent composed of ethylmercury.

The preservative is also found in hepatitis B and some influenza jabs but it is not used in the controversial MMR vaccine which campaigners have also linked to autism.

Mum-of-three Claire, who has two autistic children, Fisk and Katrina, has been dubbed the English Erin Brockovich in the US because of her campaign against the preservative.

She claims that her children became autistic as a direct result of being injected with vaccinations containing Thiomersal. The US Congress has recommended that pharmaceutical companies stop using the preservative in paediatric vaccines in America and British campaigners want an outright ban on mercury being used in child vaccinations here.

But the UK government has rejected suggestions that the preservative has any adverse effect on infants.

It has been estimated that there has been a fivefold increase in autism in Britain in the last 20 years.

US researchers have claimed that children who received vaccines containing Thiomersal were more than twice as likely to develop autism than children who did not.

Studies have also showed that the symptoms of autism are markedly similar to those of mercury poisoning.

Claire first heard about the possible links between autism and Thiomersal through a friend who sent her a report titled Autism: A Novel Form of Mercury Poisoning.

Her son Fisk was nine at the time and she immediately began investigating the claims.

She now works with the legal firm Waters & Kraus who have taken on Thiomersal cases. More than 2,000 families have contacted them about it.

‘I’ve no doubt that there are children who have been diagnosed with autism who have been damaged by MMR,’ said Claire.

‘But I think there is another group that have been damaged by persistent exposure to Thiomersal through other shots.

‘More children than ever before are being diagnosed with autism and there has also been an increase in neurological disorders such as Attention Deficit Disorder.

‘Experts say that this is due to doctors being more aware of the problems, but if that is the case, where are all the adults who missed being diagnosed with autism when they were children? ‘All my children were born in the same hospital and went to the same doctors. The only difference between them is the vaccines they received.

‘My second child Katrina is not nearly as affected as my son. By chance she received less vaccines containing Thiomersal than Fisk did.

‘I had heard the debates about MMR and decided not to give her the booster jab she was due. Jillian, my third child, didn’t have any and she is not autistic.

‘We want Thiomersal taken out of everything. There is no reason to have a substance that is toxic in anything given to humans.

‘I can’t change what has happened to my family but I want other parents to be able to have the choice to make the right decisions for their children.’ Claire said that she is not against vaccinations which do protect against diseases.

She said that she allowed her children to be vaccinated because she wanted to be a good mother.

‘I’m not going to beat myself up about it,’ she added. ‘I got my children vaccinated because I thought I was being a good parent.

‘Fisk has had therapy since he was three years old. He’s in a regular school now but still needs aids to help him.

‘It is very hard to deal with him sometimes. Other times it can be great. His friends have to be very tolerant of him.

‘I don’t know what to expect for him. Some days I think he is OK and that he will make it. One of my biggest fears is that he will never be independent.

‘I didn’t think about Thiomersal until I did research and ordered Fisk’s medical records after hearing about the dangers.

‘I went back and charted each visit I had to the doctors with each of my children and assessed each reaction they had to each vaccine.

‘I believe my son and daughter are autistic because of the vaccinations they received that contained Thiomersal.’ A US government report has recommended that President Bush should order a White House conference on autism to uncover the causes of the epidemic in America.

The latest findings in the States show that the number of autistic children is growing between 10 and 17 per cent every year.

Jonathan Harris, West Midlands representative for the campaign group Justice, Awareness and Basic Support -JABS for short -is urging the British government to take more heed of this research.

‘The similarities between the symptoms of mercury poisoning and autism are frightening,’ he said.

‘We should be doing the same as America and phasing out the use of mercury in vaccinations.

‘The Government is too readily influenced by the pharmaceutical industry who, at the end of the day, are making money out of these vaccines.

‘If a parent followed all the recommendations laid down by the British government their child would have received a total of 29 vaccinations by the time they reached school age.

‘Eighteen of these are given before they are six months old. It is ridiculous.

‘Two of my four children are autistic and I believe this was caused by their MMR vaccination.’ A spokesman for the Department of Health said: ‘Two

independently- conducted UK epidemiological studies that investigated the safety of Thiomersal-containing vaccines for infants have been recently completed.

‘These studies showed no evidence of adverse developmental effects from exposure to levels of Thiomersal at the amounts used in existing UK vaccines.

‘A further study in infants has shown that ethylmercury is rapidly excreted from the body following administration of Thiomersal-containing vaccines.’ The World Health Organisation has stated that its Global Advisory Committee on Vaccine Safety is reviewing the safety of Thiomersal.

Its experts say current assessments have not provided enough evidence to prove toxicity in infants, children or adults exposed to Thiomersal.

John Hudson is breaking out of his autistic shell. His mother, Annette, thanks a Medicaid-funded program for the improvements, so she was disappointed when she found out administrators decided to deny him services.

The 3-year-old Simpsonville boy’s case is part of a larger paring down of the Medicaid rolls.

John is one of many autistic children who have received letters saying their services will be cut off. Now clients must be worse off medically and their families must have lower incomes for them to receive services.

Emergency regulations went into effect April 4 to tighten Medicaid eligibility requirements to lower costs. John, however, was denied under the old regulations. The head of the Medicaid department serving him said he was not denied because of cost cutting, but because he and others like him had been added to the program by mistake.

Annette, however, blames the denial on a government effort to balance the budget.

During an appeals process, John is still receiving a home-based service called Behavior Intervention for Autistic Children. A BIFAC therapist comes to the Hudson’s home 18 hours a week to work with John. Activities include sorting shapes and working on speech skills.

Children with autism have trouble putting words together, often spin in circles and isolate themselves socially. Annette Hudson thinks John got autism after suffering a 106-degree fever from an immunization shot.

If people with autism do not receive services while young, they run a risk of being institutionalized. “Early intervention is the key,” said the Hudson’s lawyer, Gwendolyn N. Snodgrass.

Since the home visits began earlier this year, John’s condition has markedly improved, his mom said. “They have really done wonders with him,” she said.

John was non-verbal when he started the program, expressing himself with squeals and screams. Now he no longer bangs his head and can say some words.

“He’s doing excellent,” Hudson said. She expects further improvement if he continues in the program.

If administrators deny the Hudson’s appeal, Annette and her husband, Michael, will pay for as much as they can with their own money.

Her goal is to bring John’s development to a point where someone could not pick him out as autistic in a regular classroom.

In his free time, John likes to watch videos and play, especially on a backyard Jungle Gym. “He’s a sweet boy,” his mom said.

John has been getting about $3,000 worth of services each month. The Hudsons received the denial letter April 11 and she appealed the case last month.

John received services through a plan called Impact Plus. Some Impact Plus clients had been mistakenly referred to the program, said David Hanna, director of the Medicaid division for mental health and mental retardation services. Medicaid is a federal program administered by the state.

Hanna said his agency became aware of the problem of some clients receiving the services when they should not have been about the same time as other cost cutting measures.

People like John have lost this service because a medical professional has decided it is no longer medically necessary. Someone would qualify under the stricter requirements, for instance, if he or she was being fed through a tube, Annette Hudson said.

Snodgrass believes lawmakers should be working to make sure there is enough funding to continue programs like the one John receives. She said a General Assembly statute states lawmakers have given a high priority for funding programs that serve those with developmental disabilities.

Imitation Performance In Toddlers With Autism And Those With Other Developmental Disorders.

BACKGROUND: The present study sought to examine the specificity, developmental correlates, nature and pervasiveness of imitation deficits very early in the development of autism.

METHODS: Subjects were 24 children with autism (mean age 34 months), 18 children with fragile X syndrome, 20 children with other developmental disorders, and 15 typically-developing children. Tasks included manual, oral-facial, and object oriented imitations, developmental measures, joint attention ability, and motor abilities.

RESULTS: Children with autism were found to be significantly more impaired in overall imitation abilities, oral-facial imitation, and imitations of actions on objects than children in all of the other groups. Imitation skills of young children with fragile X syndrome were strongly influenced by the absence or presence of symptoms of autism. For children with autism, imitation skills were strongly correlated with autistic symptoms and joint attention, even when controlling for developmental level. For comparison groups, imitation was related to other developmental abilities including play, language, and visual spatial skills. Neither motor functioning nor social responsivity accounted for a significant amount of variance in imitation scores, when controlling for overall developmental level, which accounted for much of the variation in imitation ability.

CONCLUSIONS: Simple imitation skills were differentially impaired in young children with autism, and lack of social cooperation did not account for their poor performance. In autism, imitation skills clustered with dyadic and triadic social interactions and overall developmental level, but were not related to play or language development. For comparison children, all these areas were inter-related. Hypotheses about a specific dyspraxic deficit underlying the imitation performance in autism were not supported.

In the June 16 SAR there is a comment on the existence of “joint pain”. Anyone have a reference to “joint pain” in the medical literature as existing in autism patients? I have references for other disorders, but would like a medical reference for autism. Joe Herr lotsaoaks@earthlink.net

As the parent of a child with ASD I continue to find social skills are lacking at school. Does anyone know of a social skills program for elementary aged children? My goal is to develop a similar program in our community for children with ASD. My email is ldavis7@nycap.rr.com. I live in Upstate NY.

“The word ‘politics’ is derived from the word ‘poly’, meaning ‘many’, and the word ‘ticks,’ meaning ‘blood sucking parasites’.” - Larry Hardim

We have a 3.5 years old son diagnosed with PDD. He likes puzzles. So, we decided to use it to learn basic subjects, like home, father, mother and etc. We contacted one of the promotional gift ideas web site http://www.photogift.net and ordered puzzles with selected pictures. It worked really well. The only problem is the puzzles we ordered are 30 pieces, but they promised that they are planning to come up with 4-8 pieces puzzle very soon.

Does anyone know if Disney World will make special accommodations for children with autism? If so, how do you about getting it? patti.gaultney@cox.net

(AACC) Autism Arts Conference Connection Contest: 2003-Essay Contest, where winners select their own conference to attend. Deadline: September 1, 2003 Worldwide No cost for submissions Winners will be posted on our website http:www.autismarts.com

Looking for a OT certified in Sensory Integration therapy and experience with ASD kids. Live in the Triad area of North Carolina, so High Point, Greensboro or Winston-Salem would be fine. jhud2@earthlink.net

Found a Dr. in Tarzana, Ca, that’s curing Autistic children! We’ve met 2 kids that have drastically changed after seeing this Dr. for 7 months. So, impressed, our child is on his 6-8 month waiting list! He’ll send success stories info. if you inquire! Check out http://www.nids.net; Dr. Goldberg testifies on Capitol Hill to see his findings. Have more “proof” if interested! Michelle Gutierrez jimnchelle@citlink.net

Last Call To all members of GFCFKids - http://www.GFCFDietSurvey.org is wrapping up it’s final survey results for people on the GFCF Diet. Submissions will close on Wednesday, July 9. The survey is especially looking for people who have previously submitted results to help in longer term tracking of participants. Judy DeHart Editor http://www.gfcfdiet.com/

For those in BRISBANE AUSTRALIA, Researchers from the University of Queensland invite parents of ASD children 10 and under needed to evaluate a well-known parenting program. You will be required to attend one session only sometime in July. These sessions will be held on Saturdays Please contact Koa Whittingham s355650@student.uq.edu.au

Here is the database to report your Mercury Exposure Experience, the links are on this page: This is a win win situation, to create a personal ongoing record, to recognize the order of appearance of symptoms, to compare experiences. http://www.geocities.com/toothfairytrust/

Now in So. Calif. May be moving to Kitsap County, Wash. Have 17 years experience working with children with autism. Now am providing respite. I work nights, some days, and all weekend. Does anybody in Washington have employment suggestions, other than working for school districts? amyreyna@socal.rr.com

Know about my project http://www.quietquilt.com, a product I designed to meet the sensory needs of my son.

Does anyone have information on the effects of caffeine related to seizures? My daughter is autistic and has seizures about 2 to 3 times a month. I’ve cut out her caffeine and noticed a big improvement. Is there any research regarding this? LAJRJW2000@aol.com Linda Jurek

Is the incidence of autism higher by gender or age? Harry A. Crouch harryal@earthlink.net

Any idea how I can get in touch with Dr. Rashid Buttar in NC about chelation lotion? BDRCHughes@aol.com Becky Hughes, SC

Good news: Michael Savage was fired today at MSNBC for his usual hateful remarks. He still airs on over 300 radio stations nationwide, but the fact that he was fired from a powerful mainstream media outlet is a positive one. ~Darcy Silverman

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