Schafer Autism Report - July 30, 2003

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The current issue of Kaleidoscope: Exploring the Experience of Disability through Literature and the Fine Arts called “Autism--A Life Apart,” features a variety of poetry, fiction, nonfiction, personal essays and art. Some of the work featured includes the insightful poetry of Barbara Crooker, a mother of a child with autism; the self-portraiture and works of fantasy by emerging artist William Ferguson; and a personal essay by Elizabeth Trembley entitled “Between His Lines” -- a lyrical account of an aunt’s relationship with her nephew who is autistic and her openness to sharing his world.

Kaleidoscope Magazine has a creative focus that examines the experiences of disability through literature and the fine arts. Unique to the field of disability studies, this award-winning publication expresses the experiences of disability from the perspective of individuals, families, healthcare professionals, and society as a whole. The material chosen for Kaleidoscope challenges and overcomes stereotypical, patronizing, and sentimental attitudes about disability.

Samples of work from several contributors to the magazine and a complete table of contents are available by logging on the www.udsakron.org/kaleidoscope.htm.

Luke Jackson has Asperger’s syndrome, a form of autism. While many consider it a disability, Luke explains why he believes being different is a gift.

Hi, I’m Luke Jackson and I’m 14 years old. I am a completely “normal” kid, apart from the fact that I have Asperger’s syndrome (AS), a “mild” form of Autism.

I was born with it, and it may have come from another family member (here I tend to look meaningfully at Mum) but I don’t want to get into a discussion of genes and causes at the moment.

One unusual thing about me is that I have what some people would call a disability - but I call a gift - Asperger’s Syndrome Quote from Freaks,

living with AS. This is kind of a difficult question about something that you’ve had all your life.

It’s like asking somebody what it’s like to be human (unless they aren’t human, in which case they probably wouldn’t answer, at least not in any human language).

Before you all walk off dejectedly, what I can tell you is what it feels like to live my life.

I don’t know what “normal” is, but I know that people like me are the minority, not the majority. So that, in our society, is what constitutes “abnormal” (rather insulting I would say!).

weird. Maybe I was right! Ever since I was - well, in fact, ever since I can remember - I’ve known that I was in someway different to everybody else.

In primary school, when everyone was playing “cops and robbers” and “soldiers”, I always wanted to sit on the wall and read, or scrutinize a blade of grass or spin around in circles.

In secondary school, while everyone is standing around and performing their teenage rituals (what they are all about I really do not know!), I go to the computer room or the library and enjoy time alone or with the greatest love of my life - computers.

Being different may not be a problem for me, or other kids like me, but it sure seems to cause problems for “normal” (ha!) kids. The result... bullying! I think there is some amount of bullying going on at all times, in schools everywhere.

Some have it worse than others, but all have it. I definitely had it, and “it” was very painful at times.

A lot of teachers and adults think it is “part of growing up”, but I have written my books, talked at conferences and opened my life up on television just to let everyone know that people with autism in any shape or form are just as entitled to be themselves as anyone else in the world.

If others would take time to stop and get to know us then they would see that we have a lot to offer.

Yes, we may get angry and frustrated at the world (particularly our parents!), but that is a natural reaction to feeling like an outsider all of our lives and being misunderstood.

All in all, to all AS people and everyone reading this, always remember that “different is cool!”

Luke’s film, My Family And Autism, will be broadcast on BBC Two on Wednesday, 30 July, at 21:00 BST.

His book, Freaks, Geeks and Asperger’s Syndrome, is published by Jessica Kingsley.

Botulinum toxin type A can successfully treat and correct toe walking Dr. David Roye said at a seminar sponsored by the Children’s Hospital of New York.

Toe walking, a form of limp characterized by a fixed contracture of the Achilles tendon, is normal up to age 2 or 3 years. About 90% of cases resolve naturally, but many of the remaining cases are treated with surgery. “It is our impression that Botox [botulinum toxin type A] will decrease by half the number of children who will need surgery for their toe walking. However, there are no published data to support how effective it will prove to be over time,” said Dr. Roye of Columbia University, New York.

Calling Botox “a remarkable drug,” he explained that the usual course of treatment for toe walking requires two or three injections into the calf area. The drug relaxes the musculature in the back of the leg, allowing for a normal gait. “Some kids respond to just one injection.”

The injections have had no adverse effects to date in his patient population, Dr. Roye said at the meeting, also sponsored by Columbia University. “It is an injection so kids do not like it, but basically the only adverse effect we have seen is failure. That is, we do the injection, and it doesn’t seem to lower the tone of the muscle.” About half of children with toe walking can be cured with Botox in his experience.

Dr. Roye and his colleagues at Children’s Hospital of New York-Presbyterian were inspired to use Botox for general toe walking after first using the drug to treat the disorder in children who also have cerebral palsy, the most common cause of this type of limp. “It seemed that the milder, [non-cerebral palsy] form of the problem would be even more amenable to the treatment. As we gained experience, it was clear that it is extremely safe.”

If the child cannot stand flat and the passive range of motion is limited, toe walking is not normal and cannot be expected to resolve naturally. If asymmetry is present, toe walking is not normal.

Further Study Needed on Cognitive Effects of New Antiepileptic Drugs A DGReview of :”Newer antiepileptic drugs and cognitive issues.”

More studies are needed on the effects of newer antiepileptic drugs on cognitive function, according to a recent review from The Netherlands.

Memory impairment, mental slowing, and attention deficits are common secondary effects experienced by patients with epilepsy. In some patients, cognitive impairment can be more debilitating than the associated seizures.

Some antiepileptic drugs are effective in treating epileptic seizure activity, yet exacerbate cognitive dysfunction. Newer drugs are needed with similar efficacy in the treatment of both seizure activity and cognitive function.

Dr. Albert P. Aldenkamp at the Epilepsy Centre Kempenhaeghe, Heeze, the Netherlands, and colleagues in Heeze and Amsterdam, reviewed the effects of antiepileptic drugs on cognitive function. The review consisted of data from randomised clinical trials wherein AED monotherapy was used to treat patients with newly diagnosed epilepsy.

Studies have well-documented that all the common AEDs (i.e., valproate, carbamazepine, phenytoin, phenobarbital) have mild to moderate effects on cognitive functions. Furthermore, adverse cognitive effects appear to be worse with combinatorial treatment.

Newer AEDs appear to have similar efficacy and safety profiles to common AEDs; however meta-analyses of effects on cognitive function are needed.

Some evidence is available for lamotrigine, topiramate, and oxcarbazepine, yet insufficient evidence has been presented for 3 newer AEDs, tiagabine, gabapentin, and levetiracetam.

From available studies, it has been concluded that oxcarbazepine and lamotrigine do not affect cognitive function in healthy volunteers or in adults with newly diagnosed epilepsy. Though, more studies are needed with regard to oxcarbazepine treatment in children. Lamotrigine has also been suggested to help improve memory, particularly in elderly patients with age-associated memory impairment.

In contrast, topiramate has been found to affect cognitive function. Specifically, treatment has adverse effects on attention and verbal function and language.

Due to the lack of controlled studies of the newer AEDs, Dr. Aldenkamp advocates that “much more attention is warranted in drug development and in postmarketing evaluation to establish the effect of drugs on behaviour.”

Epilepsia 2003;44:4:21-29. “Newer antiepileptic drugs and cognitive issues.”

Campaigners in the Midlands are urging the government to investigate how many unvaccinated people have autism.

The MMR Research Trust believes the study could prove whether the jabs are linked to a potentially poisonous mercury compound called Thiomersal, found in vaccination jabs.

The Gloucestershire group claims it has conducted its own surveys and discovered just one autistic person who had not received childhood inoculations.

Around 500,000 UK families are currently affected by autism, a condition the Sunday Mercury revealed last month could be linked to Thiomersal.

Tony Bateson, director of the MMR Research Trust, said he wanted to see research into the health of four million unvaccinated Britons born since 1966.

His daughter Claire, now in her 30s, is profoundly autistic which he believes was a result of her childhood exposure to Thiomersal contained in DTP (Diptheria, Tetanus and Pertussis) vaccinations.

“After three years work looking into vaccines and their involvement with autism, we found only one autistic child who had not been vaccinated,” he said.

“This is despite the fact that there are about four million unvaccinated people in the UK.

“Parents of autistic children often report an immediate adverse response of their child to MMR.

“The use of the DTP vaccination prior to the MMR vaccination is no coincidence.

“It is in the nature of mercury poisoning that damage may be slow to develop and may be unseen.

“The vaccine exploits this vulnerability to cause collateral long-term damage leading to autism.”

Thiomersal, a compound 50 per cent composed of ethylmercury, is currently being phased out in US paediatric vaccines, but the British government has refused to follow suit. Ministers claim that there is no conclusive evidence to prove the preservative causes autism.

Earlier this month the Sunday Mercury reported on Coventry mum Claire Bothwell’s campaign to stop the use of mercury in vaccines in the US, where she now lives.

The mother-of-three is claiming compensation from the pharmaceutical companies who produce Thiomersal, which is not used in MMR jabs but is found in other childhood inoculations.

She claims that the preservative caused two of her children to become autistic and has been contacted by 2,000 families across the US with similar concerns.

A Department of Health spokesman said: “MMR remains the best way of protecting your child from measles, mumps and rubella.

“Our priority is to give accurate information to parents that explains the real benefits of MMR and describe for them the very few risks that could occur.”

Former SC State Senator Charged with Assaulting Autistic 9-year-old Boy Garrison backers rally support

Pendleton — About 90 people endured 90 degree temperatures Monday to show their support for former state Sen. T. Ed Garrison, days after he was charged with assaulting an autistic 9-year-old boy at the Anderson YMCA.

Pat Evans of Pendleton and her daughter Grace Ammons organized the event after they saw reports of the incident on cable news channel CNN.

Calling it an “unfortunate incident,” Ms. Ammons blasted local media for what she called their one-sided coverage of the event and said the real issue was the fact that the 9-year-old boy, Xavier Garret, was not supervised.

Mr. Garrison was in a water aerobics class at the Anderson YMCA on Friday when the incident occurred. The police report states the boy was struck in the face and dunked in the pool “approximately twice,” although Mr. Garrison’s statement in the report was that he only pushed the boy backward “with his head going under the water” after the boy kicked him in the groin.

Ken Buchanan of Anderson was also in the aerobics class and said he witnessed the incident. He said Xavier kicked Mr. Garrison when he asked the boy to stop disrupting the class.

“(Mr. Garrison) pushed him away underwater, dunked him a little bit,” Mr. Buchanan said. “He’s not the little-bitty fellow that the paper shows, he weighs at least 150 pounds.”

The police report said Xavier weighed about 120 pounds and Mr. Garrison about 200 pounds.

He said about 50 people were involved in the class, but only about seven people were in Mr. Garrison’s part of the pool when the incident happened. Mr. Buchanan said Mr. Garrison just shoved the boy away, what he called a natural reaction to being kicked.

Anderson police Sgt. Mike Walters said in statements Friday that several witnesses who were present at the YMCA pool gave statements to the contrary.

Dr. William Hunter, a family practice doctor and grandfather of an autistic child, gave a speech at the rally he called “In defense of autism and Ed Garrison.” He said that autistic children look normal but that their behavior is unpredictable. He said the whole situation could have been prevented if the child had proper supervision. Others at the rally agreed.

“I lay most of the blame on the Y,” said Sara Thornton of Anderson. “An 81-year-old man shouldn’t have to cope with a 9-year-old child.”

Billy Rhodes, director of the Anderson YMCA, said he wouldn’t comment on the situation because he didn’t want to disrupt an investigation. He said the YMCA did have a policy on child supervision but did not elaborate.

Xavier’s father, Paul Garrett, who is also a principal at Crossroads Alternative School in Elberton, said his son had a counselor with him and that she was the first one to report the incident.

Most of the people who attended the rally wanted to defend Mr. Garrison’s character, saying they could not imagine him wanting to hurt the child intentionally.

Jim Young of Anderson graduated from high school with Mr. Garrison in 1938 and said he spoke with Mr. Garrison on the phone Monday morning. The Garrisons did not attend the rally.

“He seems to be befuddled by the whole thing,” Mr. Young said. “Maybe Ed owes an apology and the parents of the child owe an apology. Seems to me a little forgiveness is in order.”

“We want to see justice,” Mr. Garrett said, adding that he has not heard an apology from Mr. Garrison. “I would feel the same way if this was something that happened to Mr. Garrison’s son.”

Mr. Garrison served as a Democrat in the House of Representatives and the Senate from 1959 to 1988. Clemson University’s livestock arena bears his name.

Tenth Circuit Assistant Solicitor Joy Davis said she will be prosecuting the case. She said she has yet to see the case files and will have to conduct a complete investigation before deciding how to proceed.

Grace Foundation’s programs provide a safe, comfortable, fun atmosphere for children with autism

The fans didn’t fill the bleachers. They didn’t line the fence. The supporters of this team were right on the field and in the dugout with their favorite ball players.

On Sunday mornings this spring -- and well into the summer, thanks to record-breaking rainfall -- children participating in the baseball program at the Grace Foundation showed up to give their all on the field at Great Kills Little League.

Try Our Classifieds The Grace Foundation’s mission is to advocate for Staten Island and Brooklyn families of children diagnosed with autistic spectrum disorders. Their focus has been support and education, since its inception three years ago.

“We focus on three main areas -- recreation, parents support and education,” said Joe Gambale, director of the Foundation, which has a 21-member board of directors, all of whom are volunteers.

Autism, a developmental disability that typically appears in the first three years of life, is a neurological disorder that affects the functioning of the brain. According to the Centers for Disease Control and Prevention, as many as 2 to 6 in 1,000 people are affected.

According to the Autism Society of America, characteristics of autism include resistance to change; difficulty expressing needs, using gestures instead of words; laughing, crying or showing distress for reasons not obvious to others; tantrums; repetitive language; uneven motor skills; unresponsive; little or no eye contact; prefers to be alone, and more. However, each autistic person’s characteristics are unique, the Society noted.

With special needs and skills, playing an organized game or participating in organized events presents special challenges. That’s where the Foundation comes in.

Parents and siblings took the field with the players -- clad in baseball hats and T-shirts -- to assist them with hitting, running the bases and coming into home plate.

“Good swing!” cried Carlos Martinez of Rosebank, from behind home plate, encouraging one of the youngsters at bat.

The three-strikes-and-you’re-out rule is suspended during the “game,” where the children swing as often as it takes to make contact with the ball.

“Basically, it’s hitting and running,” said Denise Purcell of Great Kills, whose son, Ryan, 9, has been playing for the last two or three years. “They like it. I think it’s good for them to be outside.”

The no-pressure game offers the children a chance to get out and have fun with their peers.

Six-year-old Domenic Caragiulo has been participating in the Foundation’s programs for the last three years. In addition to baseball, where he likes to hit the ball and run, he bowls and attends all of their special events.

“I like to see him have a good time,” said his mother, Christine Caragiulo of Annadale. “He’s understood here. he’s not criticized. The kids are great -- they’re all really friendly.”

The environment that the Foundation has created for these types of events is comfortable for the children.

“When we’re with the Grace Foundation, we’re amongst our peers,” said Paul Oliveri of Huguenot, whose son Larry, 11, has autism. “You have to be thankful for the program. This is our home away from home. This is great. No one makes fun of them.”

Watching his two older sons play from the dugout, Oliveri, whose youngest child accompanied him in a stroller, added that the parents in the organization also work wonders. “When we have problems, the parents brainstorm,” he said.

Mrs. Caragiulo concurred. “The parents are very knowledgeable. If you’re having a problem, they can help you.”

The Foundation also sponsors an annual conference and Grace University, “a series of workshops and seminars, dealing with a spectrum of issues relative to autism,” Gambale said. Recreation programs include the little league, bowling, swimming, yoga, fun and frolic and soon, soccer.

Support groups for parents and siblings, socialization classes for children, summer camp and a Boy Scout troop for autistic children round out the Foundation’s earliest accomplishments. In addition, a $50,000 grant has been secured by Councilman James Oddo for the creation of an autism center on the Island as well as to develop a specialized reading program.

“It’s a great organization,” Oliveri said. “It’s a place where kids can be kids.”

After looking at how much NIH has given to autism research, it’s very apparent that we’re on own, especially when it comes to the research that matters most.

In light of this, we’ve planned a huge day-long event called “Artism for Autism.” Presented by The Autism Autoimmunity Project, this art fundraiser is being supported by the following world-recognized artists: - Actress Jane Seymour has donated a piece worth $2000. Known more for her acting, Jane is also an extraordinary artist who’s had dozens of exhibitions in top galleries across the US.

- Georgie Pocheptsov, the “little-boy Picasso” prodigy seen on Oprah and featured in media throughout the world, has created a never- before-seen original for our event worth $20,000. He’s also donating two signed prints of his earlier pieces done at ages 3 and 4.

- Metin Bereketli, known as the “Hollywood Artist,” has his work featured in such shows as “Friends,” “Will and Grace,” “ER,” and many more. He has donated an original painting worth $30,000, and several hand-signed prints.

- Michael Israel will perform his brilliant “art in concert” LIVE at both the daytime and nighttime events. This is one cool show. Michael paints on stage quickly to music and is famous for his “spinning canvas.” Two of his paintings will be auctioned after each event and some could go for as much as $10,000 each.

- We’re the second charitible organization to receive a Vatican- released and signed duplication of Michelangelo’s Madonna Della Pieta which will start at $15,000 the night of the event. It comes with the Vatican seal and letter of authenticity. The Madonna Della Pieta was the only sculpture ever signed by Michelangelo.

- Many other remarkable artists have donated including autistic children, adults, and parents of autistic children. Other celebrity art will also be available.

Artism for Autism will be held on Saturday, September 20th. The daytime event will start at 10:00 a.m. in downtown Raleigh, North Carolina. Art will be available for purchase and many of the artists themselves will be on hand to sign posters. There will also be a live radio broadcast. The band “Liquid Pleasure” will be performing. Over the years, Liquid Pleasure has appeared with such notable artists as Paula Abdul, The Temptations, Whitney Houston, The Four Tops, Stacy Lattisaw, Aretha Franklin and Jeffery Osborne. The daytime event will end with Michael Israel’s magical performance. It will be a day of art, music, and fun for the whole family.

The nighttime event will be a private dinner for 300 at the Raleigh Crabtree Marriott. Michael Israel will be performing and the top three most valuable paintings will be auctioned off. A few celebs are sure to be in attendance.

Silent auction items will also be available including a hand-signed book from Mya Angelou and so much more.

We will be raising money for the Autism Research Initiative at Wake Forest University headed up by Dr. Jeff Segal. Dr. Segal is not only a researcher and neurosurgeon, he has an affected child. We will also be raising money for other family-care programs. For a copy of the initiative, please e-mail me at lorimcilwain@nc.rr.com.

Our “Double-Doer Program” will be for those who wish to purchase paintings for autism and then donate them to the children’s units at Duke, UNC and other hospitals.

The daytime event is free---tickets for the nighttime event will start at $150.00 per plate. If you know of any art-fanatics who would want to attend, let me know so I can add them to our private invitation list. If you know anyone who would be interested in purchasing art even if they are unable to attend, let me know as well. My e-mail is lorimcilwain@nc.rr.com I know the dinner is pricey and most will not be able to afford to attend. However, we are trying to gather sponsors and other donors to pay for two tables for parents who couldn’t come otherwise. Please write me at lorimcilwain@nc.rr.com if you are in the Raleigh area and wish to be added to the list of those receiving a sponsored chair. It will be on a first-come/first-serve basis.

If you wish to learn more about the event, please visit http://www.artismforautism.com. So many people are working hard for this event. You know who you are, so thank you! Thanks to the Autism Autoimmunity Project as well for presenting the event. Our goal is to raise half-a-million dollars.

Dallas, TX - I winced when our pediatrician’s nurse walked into the exam room carrying two trays laden four syringes each. Our two-month-old twins were about to receive their first round of vaccinations.

However tough it was to see those needles, I never thought twice about having our children vaccinated. Of course they would be. Immunizations save lives.

The greatest health triumphs of the last century had nothing to do high-tech imaging or transplant surgery. The two most important health advances were better sanitation - meaning clean water - and mass vaccination programs. No other health initiatives have done so much good for so many with so little risk and at so low a cost.

That’s why a recent change in state law should alarm - and anger - anyone who cares about children’s health. Buried in a sprawling government reorganization bill, the measure will allow more parents to avoid having their children immunized before they enroll in school.

Current law permits children with medical problems, or those whose parents object on religious grounds, to forgo vaccination. Fewer than 100,000 of the state’s 4 million school children attended classes under those waivers last year. The new policy will allow any child whose parents object to vaccines to enroll in school without shots.

Passing this measure is like saying tobacco doesn’t cause cancer. The new policy implies that vaccines do more harm than good, which is demonstrably false.

Some supporters of the new policy suspect that a preservative once used in vaccines triggers autism. Scientific studies have disproved that theory. Other parents fear their child may have a bad reaction to a shot - which is possible, though extremely rare. Still others may not believe in mainstream medicine, or that their child will encounter a specific virus or bacteria, or that a disease like chicken pox is dangerous enough to warrant a preventive immunization.

These attitudes are possible only because of the success of past vaccination programs. Most Americans under 45 don’t remember the childhood diseases that used to kill or maim thousands annually. But many older adults remember the dread of polio summers, and the horror of polio victims living in iron lungs. And these diseases haven’t vanished. In 1989-90, a measles outbreak in Dallas County killed a dozen children. Our pediatrician had three unvaccinated children hospitalized with whooping cough last year.

Vaccinations are both a selfish and a selfless health measure. When you vaccinate your child, he’ll be protected from certain diseases. When 20 out of 21 kids in a classroom are immunized, they protect the one child who cannot take the vaccine because she’s undergoing chemotherapy for cancer. When an entire population is inoculated, a disease has no human reservoir in which it can mutate and re-emerge. Through mass vaccinations, smallpox was wiped off the planet. The only surviving samples of the virus were kept by the Soviet Union and the United States for biological warfare purposes.

Un-immunized children are essentially freeloaders on the health system. They incrementally undermine the margin of safety created when almost all kids are vaccinated. The state’s new policy on immunizations is a great leap backward for children’s health.

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