World observes first autism awareness day
By Chelo Banal-Formoso
Philippine Daily Inquirer
First Posted 06:05:00 04/02/2008
Filed Under: Health, Health treatment, Diseases
TODAY THE UNITED NATIONS and Autism Syndrome Disorder (ASD) organizations around the world are observing the first World Autism Awareness Day.
Why would a community of nations usually neck-deep in issues relating to peace, poverty and pollution, among other grievous concerns, want to drum up international attention for a disability like ASD?
The answer is simple. ASD has become a global epidemic.
One T-shirt designed by an autism support group sums it up succinctly: “10 years ago: 1 in 10,000; 5 years ago: 1 in 1,000; Today: 1 in 150; Scared yet?”
The conservative estimate is there are 35 million people with autism in the world. There is hardly anyone who does not know a family with a child with ASD.
“Every 20 minutes a family embarks on this terrible journey,” says parent Katie Wright in her foreword to the book “Changing the Course of Autism: A Scientific Approach for Parents and Physicians” by Brian Jepson, M.D., with Jane Johnson.
Initiated by Qatar last December and approved by the UN General Assembly for observance every year on April 2, the resolution seeks to promote early diagnosis, early intervention and necessary services for individuals with ASD.
Banging on doors
All over the world, parents of children with ASD are, as Wright puts it, “banging on the doors of pediatricians and pediatric gastroenterologists, looking for answers and finding none ... This situation is shameful.”
Finding a good doctor who specializes in treating autism is, seriously, like looking for a needle in a haystack.
“Many physicians rely solely on the practice patterns of others and never read the literature themselves,” Jepson notes. “Some of what they know is outdated, and some of what they’ve been taught may be inaccurate and misleading.”
Jepson, board-certified in emergency medicine, switched his attention to the study and treatment of autism after his second son was diagnosed with ASD. He is now medical services director at Thoughtful House Center for Children in Austin, Texas.
No rest for parents
For the treatment of their children with ASD, parents should not rest until they find a specialist who networks with other ASD doctors, attends ASD conferences, reads up on research and accepts parental input.
The book says there is evidence in medical studies that autism is an epidemic; that it is a medical disease, not a psychological disorder; and that it affects other body organ systems besides the brain. The best news, however, is that autism is treatable, and if intervention is given in the earliest years, a child can get better.
Correct nutrition
There is no fast formula for treatment but the first thing that is usually prescribed is correct nutrition.
“Replace what the child is missing, remove what is causing harm, and break the inflammatory cycle,” Jepson writes. “Changing the diet is probably the most difficult thing that parents are asked to do, but the improvements are often immediate.”
The nutrition guide that parents must follow for their children with ASD involves adding and subtracting.
Without this kind of intervention, their kids will continue to suffer by eating day after day only two or three kinds of food—usually the most harmful to them.
What to add? Jepson recommends correcting nutritional deficiencies through vitamins, minerals and other nutrients. The book has 21 pages of these supplements.
Gluten-free diet
What to subtract? Parents recommend taking away food with dairy and wheat as well as oats. The diet is known as the gluten-free/casein-free diet, or GF/CF for short.
Two years ago, none of the GF/CF foods available to parents abroad could be purchased here. Thanks to the advocacy of parents of children with ASD, reputable health store chain Healthy Options now has sections for gluten-free and lactose-free foods, as well as books such as Jepson’s.
The hardest thing for parents to deny any child is cookies because, well, everybody loves cookies. To their relief, a variety of gluten-free snacks, as well as cereals and pastas, are now on the shelves of Healthy Options, which is found in most major malls. The store also carries casein-free milk and chocolate drinks (no cows’ milk but milk substitutes with as much calcium).
Pan de sal, baked fresh with imported GF/CF flour and containing no yeast, preservatives, or artificial flavorings is now available at Free Living (tels. 6313005 and 0917-7374489).
Treatment not a sprint
If your child eats nothing but chicken, Free Living carries nuggets, hotdogs, tocino and longganisa made of chicken. All their products are made in a kitchen that is dedicated to preparing and cooking only GF/CF products so there is no contamination.
One important reminder to parents: Do not try to remove food that is not gluten-free and casein-free all at once and refrain from giving several kinds of vitamins and nutrients all at once.
Otherwise, it will be hard to tell which worked or adversely affected their child, says Jepson. Wait several days or weeks before introducing a new food or treatment.
“Remember that the treatment of autism is like a marathon, not a sprint,” he cautions. The management of a chronic disease like ASD is usually long term. Some children respond immediately to treatment, others take longer.
But here’s the good news: There is no cut-off age for treatment.
“Never give up hope, at any age,” Jepson says. “The more scientists and physicians learn about autism, the more effective the treatments will become.”
The Autism Society of the Philippines, in partnership with SM-The Block, celebrates World Autism Awareness Day with a concert featuring Thristan “Tum Tum” Mendoza, a 19 year-old marimba player with autism at 4 p.m. at the Block Activity Center, SM North Edsa.
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