Schafer Autism Report - Friday, June 27, 2003

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It is hard to believe that a week from today we will be celebrating our 227th anniversary of the Declaration of Independence. For the last

dedicating hours of their time to saving IDEA. I am sure we, like all of them, are looking forward to a short holiday rest. At the same time we know

As we replay these last three months in our minds and our brief conversations between activities, we consistently have come back to the point where we feel like we are fighting a war the general public doesn’t even know is being waged. Often it feels to us – and yes many have said this aloud – that Congress is intent on passing IDEA with as little parent/student/advocacy input, and as little muss and fuss as possible. We admit we have some satisfaction in knowing that we tenacious warriors for IDEA have been able to partially open the door to the public on the IDEA reauthorization.

But isn’t it funny when you look at this reauthorization process against the background of the Declaration of Independence and the concept that we are “all created equal” and endowed with the rights to “life,

the process that has been followed to reauthorize IDEA. It just doesn’t seem right to us, or consistent with our country’s principles, that we should have to fight for our kids in private or that we should have to confront so many obstacles, including the meeting shifting tactics used for yesterday’s markup, in order to be sure that our children are in fact treated as equals, and given a full and fair opportunity to the same life, liberty and pursuit of happiness we take for granted for ourselves.

The news we are getting about the Senate markup is that it was changed in language but not in substance. When we compare either the Senate or House versions with IDEA ’97 we feel that our children are not gaining respect and opportunity as equals in the educational process. The reauthorization legislation is not improving our children’s basic ability to enjoy life, liberty and the pursuit of happiness. Instead, we are going into our 227th Independence Day celebration working frantically to save what our children still have.

We haven’t seen any recent, reasonable prediction of when the full Senate will take up S1248. We have no faith or confidence that S1248, once passed will survive more heavy handed political manipulation in Conference and come out looking anything near like S1248 hopefully will look going in. Frankly, its against our own sense and spirit of independence that we are having to wage this silent war.

Our hope is that the Independence Day weekend will come and go without a Senate vote. The chances are strong that we will see our Senators and Congressman at the parades and festivities. Don’t let the opportunity to speak up for your children’s independence pass. The harder we work on this legislation the more we realize the fight is just beginning. For us Independence Day will be but another day to fight for our children’s independence.

Who knows what the coming days and weeks will bring. We hope to have a better idea by Monday of what S1248 really looks like now. Again, our advocacy organizations probably will provide the primary analysis. The spirit of independence is a personal thing, and our children’s stories are every bit as powerful today in their fight for independence as were the stories that will be retold next week about our nation’s early days. We will remember and cherish the memories and sacrifices of those who made it possible for us to celebrate yet another Independence Day. But we will remember more the sacrifices and the centuries of suffering in silence we have forced our community of people with disabilities to endure so that they even have a chance for the life, liberty and pursuit of happiness we all so easily take for granted for ourselves. Let this Independence Day be for our children, their equality, and yes, their full independence.

WHO Committee Recommends Stricter Mercury Exposure Standards Nonprofit group urges FDA to adopt more protective warnings

U.S. Newswire - Released today, an expert committee of the World Health Organization recommended a new human exposure standard for methylmercury that is nearly twice as stringent as the existing world health exposure standard. The Mercury Policy Project, a global mercury nonprofit group, applauded the recommendation and urged the US FDA-and national health agencies around the world-to revise their standards, even before the WHO finalizes the new recommendations.

"The new WHO recommendations are more reflective of the latest science on methlymercury exposure risks. While fish is a good source of protein, we urge caution when consuming predatory fish with higher mercury levels," said Michael Bender, of the Mercury Policy Project and representative of the Ban Mercury Working Group, a coalition of 28 groups around the world working on mercury issues.

The Joint FAO/WHO Expert Committee on Food Additives recommended that the Provisional Tolerable Weekly Intake (PTWI) for methylmercury be cut in half. Meanwhile, the FDA's allowable daily intake, the amount of methylmercury that can be consumed daily over the lifespan without producing appreciable harm, is weaker by a factor of 2 (around 0.2 ug/kd/day for WHO versus 0.4 ug/kg/day for FDA.) "While WHO appears to be moving in the right direction, FDA continues to lag behind with an outdated and indefensible standard, allowing millions of pregnant moms and kids to unnecessarily be exposed to methylmercury at unsafe levels," said Bender. "We urge FDA to stop protecting the fishing industry and to start protecting sensitive populations.”

Methylmercury-the organic form mercury assumes in fish-is a potent neurotoxin that poses the greatest risk to the developing fetus, infants, and young children. According to the Centers for Disease Control, one in 12 women of childbearing age in the U.S. has unsafe mercury levels, translating to over 300,000 babies born at risk.

Most mercury pollution comes from the burning of fossil fuels in the coal-fired power plants, waste disposal, industrial processes and mining. Mercury levels in the environment have increased 3-5 fold in the past century. Since 1996, fish has surpassed beef and poultry as the most common source of protein in the world. In February 2003, the UN Governing Council found that there were sufficient adverse impacts from global mercury pollution to warrant international action.

Arizona State University is conducting a research study of the level of mercury, toxic metals, and essential minerals in the baby hair of children with autism compared to non-autistic children. The purpose of this study is to replicate two previous studies: A study by Dr. Amy Holmes et al. that found very low levels of mercury in the baby hair of children with autism, and our recent study (submitted for publication) which found low levels of several essential minerals in children with autism.

The study is open to any child in the United States who meets the following criteria:

3) Can provide a copy of vaccination records up until the first haircut, including manufacturer’s name and lot number (this information should be available by calling your pediatrician)

4) For children with autism, a written diagnosis of autism per DSM IV criteria by a certified professional

5) For non-autistic children: a) normal development - no ASD/PDD/ADD/ADHD or speech/language delay; b) no asthma, severe atopic allergies, Type I diabetes, or other autoimmune disease; c) no first or second degree relatives with ASD/PDD/ADD/ADHD; d) normal vaccination

typical non-autistic children to provide baby hair samples, even if your child cannot participate in the study.

Participants will be asked to fill out a 1-page medical history and a 1-page evaluation of the severity of their child’s autism.

Benefits: Participants will receive the results of their child’s hair analysis, a $20 gift certificate to Toys ‘R’ Us, and a copy of the study findings. We hope that this study will help us determine possible causes of autism, so that we are better able to treat it.

To Participate: please send us your email address (preferred) or mailing address: Email: Jromdalvik@aol.com (preferred mode of contact)

We gratefully acknowledge financial support from the Autism Research Institute (directed by Bernard Rimland, Ph.D).

We also gratefully acknowledge the support of the National Institute for Environmental Health Sciences (NIEHS, a branch of NIH), which will conduct the hair analysis.

Most of us take it for granted that at least we can get up in the morning, wash, dress and have breakfast before the problems kick in. But for people with physical or mental disabilities, even apparently simple tasks can be a huge challenge. Fortunately, a group of professionals who remain largely invisible help these people to function on a daily basis and in many cases to lead productive, full lives. Occupational therapists (OTs) work with people whose disabilities may have arisen from birth or due to ageing, an illness or an accident. Their aim is to help people to live as independently as possible.

Druid Fleming has been an OT at Camden and Islington Mental Health and Social Care Trust for eight years. Before that he worked in furniture design and lectured in woodwork in a prison. "You couldn't get a better job than this," he says. "It's tremendous. I work with people who have long term mental health problems. If they say, `I really want to live on my own in a flat', we can make that happen. You can really help to change people's lives. It's fantastic.”

Rebecca Sheldon specialises in orthopaedics and hand injuries at the Chesterfield and North Derbyshire Royal Hospital NHS Trust. A young woman, who we shall call Laura, was referred to her in January 2001. Laura had been stabbed repeatedly in the chest and arms by a man who broke into her home.

"Laura had extremely severe injuries and the nerves in her hands and arms were badly damaged," Sheldon says. "She couldn't do anything with them. We had splints made for her and after some time she developed a range of movement. Now she can write. To see someone who is so disabled pick up a pen is wonderful. In occupational therapy we look at the whole person. I tried to support Laura and her mother who were struggling to come to terms with how their lives had been changed forever.”

Kate Bones, professional head of occupational therapy at East Sussex County Healthcare NHS Trust, says one of the attractions of the job is the wide range of areas in which OTs work: mental health, learning disabilities, paediatrics, care of older people, stroke rehabilitation, neurology, to name a few.

The British Association and College of Occupational Therapists is the professional body for OT staff and students in the UK. It currently has nearly 25,000 members. Sheelagh Richards, the chief executive, says there is a worrying shortage of OTs. "In the early 1990s little consideration was given to waiting lists or the burgeoning demand outside the NHS in private and voluntary services. But the Government has now given a commitment to significantly increase the number of OTs being educated.”

Because the work is tailored to meet the client's needs, occupational therapy can take place in someone's home, in hospital or at work. OTs must factor in all the ways in which a person's physical, mental and social needs will impact on their recovery.

The range of clients and the complexity of their needs requires intelligence, intuitiveness and a certain amount of life experience. For that reason previous work experience is a bonus, so a career in occupational therapy can be attractive to mature people looking for a career change. Successful applicants tend to have sensitivity, tolerance, problem solving skills and the ability to work as part of a team.

A recent study showed that occupational therapists were mainly drawn to the job because of the challenging and varied nature of the work, one- to-one contact with clients, the opportunity to work creatively and the blend of craft and medicine.

Caroline Ashbolt works for the Mid-Sussex Primary Care Trust and is based at the Princess Royal Hospital in Haywards Heath. She is profoundly deaf and has a hearing dog, Sable, that accompanies her throughout the day. "My disability is not immediately apparent so Sable increases people's awareness of the fact that I am deaf and can also break the ice. As an occupational therapist you use all of your skills to help people solve their problems with whatever resources are available. There may be more than one solution to every problem. It really is a very pleasurable job because you are helping people do what they want to do with their lives.”

Becoming an occupational therapist involves practical work and academic study. The academic components include biological sciences (anatomy and physiology), behavioural sciences (psychology and sociology), occupational therapy as a profession, creative and management skills, therapeutic interventions, environmental adaptations and research.

A third of the course (1,000 hours) is spent on fieldwork practice - gaining experience in the main branches of occupational therapy, usually physical rehabilitation, learning disabilities, mental health or social care. Students learn how to assess and treat people under the guidance of a state-registered OT and finally treat a small caseload of clients under supervision.

OTs are educated in all aspects of health and social care. Julia Skelton, who is Group Head of Practice at the College of Occupational Therapists, says you get good idea of what your interests during your training. "After qualifying many people take a rotation post in a hospital where you get another opportunity to develop an interest. On the other hand if you are seconded from your job you may be required to return to your workplace after qualifying.”

Most OTs work in the NHS and start on a basic grade. They may progress to Senior II, then Senior I levels. Most people become Senior II within three to five years and many stay on that grade. Only two people are employed on clinical specialist or consultant therapist posts which the government has set a target to increase to 240 by 2004.

Judith Reep is a consultant OT for Southwark Primary Care Trust working with adults with learning disabilities. "Mine is a new strategic role and it's still evolving. There is no management component, it's about professional leadership, advanced clinical practice and research. 70 per cent of the job is client-based.”

The national shortage of OTs means there are excellent career opportunities in clinical, research, teaching and management. Many choose to specialise in one particular field of health or social care.

OTs who work in the NHS normally work a 36-hour week, Monday to Friday, although more flexible working and weekend posts are becoming available. Like many other health professionals, OTs are not usually in it for the money. In April 2002, the starting salary for a new graduate was around pounds 17,115, and a 3 per cent pay rise has just been announced. More experienced OTs can earn up to pounds 33,020 and the new consultant therapists' salaries can reach pounds 46,675. The minority work for local authorities where there is no national pay scale.

With the UK's ageing population, a growing number of people OTs work with are suffering from the effects of stroke, Alzheimer's Disease or other forms of dementia. With clients who have memory loss, OTs stimulate memory function and recall, look at reducing safety risks, and help the client cook or shop independently, or manage money.

Julia Skelton worked in the community for 20 years. She says "One of the attractions of working in social care is that you can improve a person's environment by helping them to access equipment or having their home adapted, like having a ramp installed so that they can live more independently.”

Kate Bones says: "If an OT is faced with a client who is elderly and depressed who also has problems getting on and off the toilet, the OT can offer support for the depression and sort out the toilet seat problem as well.”

OTs say what makes the job most worthwhile is the feedback they get from the people they work with. Rebecca Sheldon's client, Laura, says: "Rebecca made a difference not only in terms of my physical recovery and the fact that I can use my hands again. When many other people were being pessimistic she gave me support and encouragement. Without her I would not be where I am now. She has helped me to get back my independence and move on."

Pittsburgh Area Programs Strive To Improve Lives Of Impaired Kids Wesley Institute

Marla Green loves her 4-year-old son, John Jr., unconditionally, and she can't help but feel a swell of frustration and sadness when she sees children his age playing and interacting while he stands at the edge of the playground, lost in his own world.

The lad, who lives with his parents in Lower Burrell, Westmoreland County, is one of about 1.5 million Americans living with autism, a developmental disability that can cause severe impairment in language, cognition and communication.

"I watched a neighbor kid who is John's age ride his bike up the street for the first time, and I was happy for him," Green said. "But at the same time, I can't help but wonder whether John will ever ride a bike.”

He is part of a trend: The number of children diagnosed with mental and behavioral health issues has increased at an alarming rate over the past several years.

Three in 10 children suffer from mental health disorders, including autism, and four out of five of them never receive treatment, according to a 2001 Surgeon General's report. And the rate of autism and other types of childhood mental disorders is expected to continue rising.

In this area, the Wesley Institute Inc., a nonprofit organization with headquarters in Upper St. Clair, has opened new facilities there and in Richland to provide more than 700 youngsters and their families specialized services for autism and other developmental disabilities.

The facilities offer typical educational, behavioral health and residential services, as well as more progressive programs, Wesley chief executive Doug Muetzel said.

"Parents of children with mental health barriers are informed and aggressive in their efforts to get the best treatment available for their kids," he said. "We are responding to the interest of the parents.”

During one of Wesley's music therapy programs, John Jr. spoke his own name for the first time, his mother said. "John was pretty much nonverbal last year. To hear him speak his name was overwhelming, because a lot of these children never acquire verbal language skills.”

"State funding is often behind [in supporting] the most progressive services," Muetzel said. "The government won't provide funding for programs like music and art therapy, but families find these services important.”

Although the Wesley Institute, founded in 1965, helps children with all types of mental and behavioral barriers, the new facilities are specifically geared to children diagnosed with autism, or autistic spectrum disorder as it is more formally know, Muetzel said.

The Autism Society of America's Web site describes the disorder only as "a complex developmental disability that typically appears during the first three years of life." But people with autism typically have problems with communication and social interaction.

While the institute will continue to offer in-home services for children with mental and behavioral health barriers, the new "center-based" strategy offers a number of advantages, Muetzel said. It allows the use of the latest treatments and greater support for families.

"Because the children we serve are typically younger, the role of the family is critical in treatment," Muetzel said. "These facilities provide a meeting place for these families who share the same interests and the same goal.”

Green said the support she and her family have gotten from Wesley has been outstanding. "To go to a designated place where you have other families that are going through the same trials and tribulations that you are is really nice.”

Green also looks forward to the services and support her 2-year-old daughter, Emily, will get as the sibling of an autistic child. "When she gets older and starts to understand, she'll need as much support as we do."

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