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Dr. Chris’ Autism Journal » 2007 » December
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Archive for December, 2007

Exciting News in Medical Care

Friday, December 14th, 2007
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 NEW YORK, NY (Dec 12, 2007) – Autism Speaks, the nation’s leading autism advocacy organization, today announced its Autism Treatment Network (ATN) would triple in size, expanding from five sites to fifteen sites across the United States and Canada. The ATN is a group of hospitals and medical centers dedicated to improving medical care for children and adolescents with autism spectrum disorder (ASD) and to standardizing the care those individuals receive.

The ATN’s multi-disciplinary approach includes collaboration among specialists in areas including, but not limited to, neurology, developmental pediatrics, child psychiatry, psychology, gastroenterology, genetics, metabolic disorders, and sleep disorders. The network aims to develop common clinical standards for medical care for individuals with ASD and to increase the pool of autism medical specialists through trainee mentorship and outreach to community-based physicians. As part of this effort, families receiving care at the sites can participate in a data registry that tracks children and adolescents receiving ongoing care at participating sites. The information in the database is a crucial part of developing the evidence to create and substantiate these clinical consensus standards.

“It is imperative that all children, no matter where they live, have access to excellent, evidence-based medicine,” said Autism Speaks President Mark Roithmayr. “The continuing expansion and funding of the ATN is a significant step in that direction.”

“This dramatic expansion of the Autism Treatment Network provides real opportunity to improve the quality of health care that children and youth with autism receive, and for more children to receive that care,” said Dr. James Perrin, Director, Clinical Coordinating Center, ATN, and Director, General Pediatrics, Massachusetts General Hospital for Children. “Developing common standards of medical care across fifteen sites will allow us to get answers to the questions parents ask about their children’s care much more quickly.”

The participating ATN sites are: University of Arkansas and Arkansas Children’s Hospital (Little Rock, AR); Kaiser Permanente Medical Care Program Northern California (San Jose, CA); University of Colorado Denver, School of Medicine and The Children’s Hospital (Denver, CO); Kennedy Krieger Institute and Marcus Institute (Baltimore, MD/Atlanta, GA); LADDERS/Mass General Hospital (Boston, MA); University of Missouri (Columbia, MO); Columbia University Medical Center (New York, NY); University of Rochester (Rochester, NY); Cincinnati Children’s Hospital Medical Center (Cincinnati, OH); Bloorview Kids Rehab, Surrey Place Centre and The Hospital for Sick Children (Toronto, ON, Canada); Oregon Health & Science University (Portland, OR); University of Pittsburgh (Pittsburgh, PA); Vanderbilt University Medical School (Nashville, TN); Baylor College of Medicine (Houston, TX); University of Washington (Seattle, WA).

The ATN began as a collaboration between the Northwest Autism Foundation in Oregon and Massachusetts General Hospital for Children in Boston. In 2005, the network was established with five founding sites that came together to establish multi-disciplinary practices for the evaluation and treatment of the underlying medical conditions associated with ASD. These sites currently provide services to approximately 2,000 new cases of ASD each year, and all have taken critical steps to broaden the services available to all children in these centers. The Autism Treatment Network merged with Cure Autism Now in 2006. In February 2007, Cure Autism Now merged with Autism Speaks.

To find out more about the Autism Treatment Network, or to get connected to a site in your area, visit www.autismspeaks.org/science/programs/atn/index.php or email: atn@autismspeaks.org.

The above article is reprinted with permission and can be found in its entirety at http://www.autismspeaks.org/press/atn_network_expanded.php

Parents: Preparing for the Winter Holidays

Wednesday, December 12th, 2007
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The winter holidays can be a difficult time for children with ASD and their families. Difficulties may arise from too much free time, changes in routine, and gift giving.

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Most school-age children are off school for two to three weeks for the winter holidays, leaving six to eight hours of unstructured time for families to fill each day. You’re not alone if you dread the school holidays; past experience has taught you that a lot can go wrong in two or three weeks. If you haven’t already done so, now is the time to plan how you will structure that free time for your child with ASD. Plan activities for each day of the vacation, and create simple visual supports (e.g., print a picture of a park from the Internet if you will be taking your child to the park) to prime your child about the activities you have planned. If possible, allow your child to help decide on the activities you are planning. During the vacation, review the schedule for the day the night before and on the morning of the day to which the schedule refers. Of course, you can’t plan for everything, and you will invariably have to make changes to the schedule. Let your child know of any changes as soon as possible, and provide visual supports to make the changes concrete for your child. If your family will be traveling during the vacation, changes to the schedule such as flight delays are even more likely. Prepare your child that more than likely, there will be changes to the schedule, perhaps through the use of a social story. Don’t forget to bring an assortment of things for your child to do such as coloring, books, games, or a laptop computer. plane travel.jpg
Where your child will go and what he or she will do in a day are not the only changes that may be upsetting during the winter holidays. Many people visit with friends and relatives during this time that they rarely see during the rest of the year. These people may feel like strangers to your child, and he or she may behave accordingly. Forcing your child to hug Aunt Mary because “She came all the way from Boston to see us,” is likely to induce challenging behaviors from your child and to make Aunt Mary very uncomfortable. Aunt Mary insisting on a hug may produce similar results. Inform Aunt Mary that your child may view her as a stranger and she should not be offended before Aunt Mary arrives at your home (or you at hers). If possible, show your child pictures of friends and relatives you will visit and review the names of these people before the visit.

Mansnowman.jpgy people exchange gifts during the winter holidays. This can be a source of great disappointment for family and friends of a child with ASD. As a behavior therapist, I once special ordered a beach magnet set for a child I worked with one-on-one, three hours a day, five days a week. I was sure he would love it. I imagined all the exciting language he would produce when we played with those magnets. I heard in my mind spontaneous comments he would make and squeals of delight he would emit. As you probably guessed, the boy opened the magnet set, said nothing, put it down, and picked up another toy. I tried to engage him with the magnets through my enthusiasm. Nothing worked. I have heard similar stories from parents and educators time and again. Even when the child showed intense interest in a toy when it belonged to someone else or requested the toy, the same toy is often of little interest to the child when received as a holiday gift.  As a parent, there is nothing you can do to prevent this. If you have a neurotypical child, you may have complained that he or she only played with a new toy for a day and lost interest. This is part of being a parent, but it is especially disheartening when your child is on the Autism Spectrum, has limited interests, and you worked so hard to find that special gift. Remember that your effort is special regardless of the immediate reaction to the gift. And time may reward your effort. I heard that the beach magnet set became a preferred toy for the boy I worked with over a year later.

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