Doctors and scientists can most help children with autism by sharing their interests and expertise to form a team approach to improve the lives of children with autism.
This review article describes a new way of thinking about autism. The author notes that while autism is common, doctors lack good tools for diagnosis and good treatments. Many doctors perceive borders between medical knowledge and therefore specialists such as psychiatrists, psychologists, neurologists, and pediatricians do not work together to help these children. The author calls for a paradigm shift that will improve how doctors diagnose and treat children with brain problems such as autism. He suggests bold changes in training, research, and increased efforts to work together across specialties.
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Thank goodness THAT'S over!
Jul 14, 2009 by AnonymousBastille Day. Also, visit-the-neurologist-day. Woo-hoo.
I do not understand what it is about these children that they absolutely CANNOT shut their little mouths for FIVE MINUTES while I talk to the neurologist. They were good and well-behaved until she walked in the room and that was it! They were acting like they do when I’m on the phone: like I’m standing around, doing nothing, waiting only for them to make some request of me. I broke it down, and every minute I get to spend in this doctor’s office costs $25. I had to ask her to repeat herself more than once because the kids were acting like we were at the park instead of the doctor. Then, after I finished my disjointed and frequently interrupted conversation with her, she dropped a bomb: She wanted Thomas to have blood drawn to check his liver and kidney function, and also a CBC.
I have lost count over the past few days of how many times I have told Thomas that there would be NO SHOTS at the doctor. Technically, I was right; there were no shots. But somehow, Thomas didn’t see it that way. The doctor told us that we could just come back tomorrow or the next day so that we had time to prepare Thomas, but this hospital is a good hour away (on two expressways that are both under construction) and I decided to just bite the bullet and get the blood drawn today. What jolly fun we had! Actually, the phlebotomists thought the kids were both hilarious. Thomas sat on my lap and screamed his head off while Hayley held her hands over her ears and said, “Mommy, this is CWAZY!” When they took the needle out and slapped a bandage on his arm, they offered him stickers and he said, “But I wasn’t well-behaved! I don’t deserve stickers!” We left the lab as both techs were doubled-over laughing.
Anyway, Thomas did a lot better with the neurologist’s exercises than he did last time. He successfully completed almost all of the things she wanted him to do which is a great improvement. We decided together that he should try an increased dose of Strattera, moving him up to 18 mg from 10 mg. We’re going to stick with the current dosage of Clonidine because he hasn’t gained any weight since his last appointment, which is good. A side-effect of Strattera is weight gain, I guess.
I just wish they would behave at this doctor’s office. No matter how I threaten them or try to coax them or cajole them beforehand, NOTHING works and they’re always a pain. I wish I could see this doctor without Thomas (or Hayley) having to be with me. I guess it doesn’t work that way.
In my last blog I mentioned that I was trying to get Thomas to do some writing over the summer. We did have a successful “writer’s workshop” about a week ago. We all sat down and drew a picture and then decided what to write about it. It took a lot of waiting and asking pretty-please to get Thomas to sit down and do the thing, but once he sat down he drew a nice picture of several cars on a street and then wrote – mostly by himself! – “there are 5 people in the cars.” I was so proud of him that I wanted to scan the paper into my computer and e-mail it to his teacher. In the end, I decided to leave her alone and let her have her summer. I was so tickled that Thomas even seemed to be happy with the whole thing because of my favorable reaction. We’ll try again soon. It’s just nice to know that Thomas hasn’t forgotten how to read and write since school got out. Actually, he did a much better job than he used to do in school every day, writing most of the letters and sounding out most of the words himself.
While at the doctor, we got her to sign a letter I drafted for anybody at Disney World who might want to see it. It outlined the reasons why Thomas can’t be expected to stand in long lines or be around people for too long. Really, the reason we’re going to get the Guest Assistance Card for Thomas is not for his own comfort or our sanity. It’s more for the comfort and sanity of innocent people who might be standing near us. I shudder to think of what might happen if we encounter metal queuing-area fences. If he’s got anything in his hands to whack against the metal, there will be no survivors. Anybody in line with us will be doomed. In fact, I’ve decided that’s a good thing to say if there are any rude looks or inconsiderate comments from any other patrons in line while we move modestly up to the front. “Trust me buddy, you don’t WANT to wait in line next to this kid! Wanna read the letter from his neurologist?” I’m sure everyone will be perfectly courteous and understanding.
We’re still swimming as often as we can and trying to fill up the kid’s summer days with fun activities, but it’s hard. The weather (I know, again about the weather!) has not been consistently warm or sunny, or I have to work that evening or we have a doctor’s appointment…it’s always something. We should (God willing) be done with doctors until January, so that’s good. Well, except for the pediatrician. Hayley had a check-up last week (along with a Hepatitis A booster for Thomas…I’ve never heard so much screeching in my life) and absolutely REFUSED to pee in a cup, so we’ve got to give them a sample sometime.
I’m not fooling anyone, least of all myself. It’s never going to get done, and I’m not making a special trip to the doctor with Hayley’s urine so they can dip a stick in it and tell us that all’s well.
Treatment to prevent Autism?
Feb 20, 2009 by AnonymousI read your latest book, WOW! I have an 8 month old son, and he is fine, but I have been scared about Autism since I was pregnant. I have friends with Autistic children and I believe everything these parents say is true. I am with a pediatrician now that was refered to us by a DAN Doctor. What steps do we take to protect our children? Annette Vlasidis, columbus, OH
Travelling with Special Needs Children
Dec 10, 2008 by AnonymousTEN TIPS TO EASE HOLIDAY TRAVELS WITH SPECIAL NEEDS CHILDREN:
Pediatric Therapist Aviva Weiss Tells How to Prepare for Good Times Together
Philadelphia, PA, December 8, 2008 - The chaos of packing, airport crowds and security, lengthy car rides and yes, even overexposure to family and friends is enough to erode any holiday traveler's festive spirit. Add traveling with children into the equation, especially when special needs are involved, and some parents might wish they could just stay home. But a few preparations, says Fun and Function LLC founder Aviva Weiss, can go a long way toward ensuring a good time for everyone.
Traveling disrupts routines and familiarity with the surrounding environment and can be difficult for children with special needs notes Weiss, a certified pediatric occupational therapist. A mother of four, including a daughter with sensory processing disorder, she says parents of special needs children can pave the way toward less stressful trips by observing these ten guidelines:
1. Prepare the child in advance as much as possible. Practice for the trip for a period leading up to the actual travels. Talk about the upcoming experience to help your child overcome anxiety. Act out or role play anticipated events in advance, from taking off shoes for airport security to applauding after a toast.
2. Redirect anxious energy into constructive activity. To take the edge off the potential anxiety of seeing many less familiar faces all at once, make the event a fun and educational by creating a special activity. Create a small photo album featuring people who will be at the event, and help your child play "Family Bingo," checking off each person he or she greets or sees across the room. Or, create a pictogram of your itinerary or agenda and help your child follow along.
3. Encourage creative expression. For those able to write or draw, a pocket journal or sketchbook for illustrating what they're experiencing can provide another useful outlet. Children who are more observers than participants may appreciate assignments such as taking pictures with a digital camera.
4. Don't expect perfection. Whenever you travel with children, it's best to "expect the unexpected," or at least leave room for something to pop up to divert you from your agenda.
5. Secure an extra set of hands. Try traveling with a friend, family member or caregiver to help keep things in order when you're on the move, provide manpower for carrying belongings and an extra set of eyes, and even make bathroom breaks with multiple children an easier task.
6. Manage expectations for you and your hosts. A pending visit from a special needs child may produce stress for the host as well as the child and the parent. Prepare everyone by communicating your child's needs in advance and asking for some general ground rules for inside the home, as a gesture toward making the visit as pleasant and peaceful as possible.
7. Bring along some "friends." Pack a bag of objects that are fun and familiar. Sensory gadgets/fidgets, noise reduction headphones, weighted vests, or favorite belongings from home will help filter out outside stimuli and provide a comforting connection to "home."
8. Minimize changes to eating habits. Try to keep your child's diet consistent to prevent constipation, indigestion, allergic reactions or other adverse developments. Feed your child something satisfying to comfort them before a long trip, and take along favorite utensils as a connection to more familiar situations. Don't expect your child to sit for an entire meal. Rather, prepare a spot where he or she can rest, play or calm down while the meal continues.
9. RX for safer travels. Ready a medicine kit with prescriptions, medical information and OTC products to confront fevers, allergies, cuts and other issues that may surface when you travel out of your home.
10. Preserve the moment but reserve time for breaks. The ingredients of posing for pictures - people huddled close together, bright flashes, noise and the need to stay still - can lead to overstimulation. Don't oblige your child to participate in all the photos, and be sure to take breaks in between.
"Traveling with a special needs child - or any child, for that matter - needn't be a stressful event," Weiss says. "In fact, it can be a great experience, offering lessons and fond memories for all. The keys are to prepare everyone in advance, include a few fun and familiar items and activities, and above all remember that it takes time and patience to learn how to manage change."
About Aviva Weiss and Fun and Function LLC
Aviva Weiss is founder of Fun and Function LLC, a Merion Station, Pa.-based provider of engaging, durable and functional play and therapy products at affordable prices, including an exclusive line of scooters and portable writing kits. A mother of a child with sensory processing disorder, she is also a certified pediatric occupational therapist with expertise in creating inclusive environments where all children can thrive together, and is currently working with developmental pediatrician Dr. Wendy Ross to guide children's museums toward improving experiences for children with special needs and their families. She previously worked at Children's Hospital of Philadelphia and St. Christopher's Hospital, and earned her B.S. in Psychology from Touro College and her Masters in Occupational Therapy from The Richard Stockton College, graduating summa cum laude from both programs.
Weiss launched Fun and Function in 2005 when she first identified her daughter's challenges and was frustrated by the lack of kid-friendly styling and high prices of existing special-needs products. She began designing products that elicit the potential of all children, help them feel good and achieve their best. Today, the company offers hundreds of innovative products marked by affordability and durability, scoring points with parents, pediatric therapists and educators. For more information or a free catalog, visit www.funandfunction.com or call 1-800-231-6329.
Yummy Food or Yucky Food
Sep 11, 2008 by AnonymousOne Person's Yummy Food Is Another Person's Yucky Food
Vegetables and protein (fish, poultry, meats, and beans) are the most common food aversions. Some children even reject fruits. The diet becomes extremely restricted to bland, white foods, including sweets, breads, pasta, crackers, pretzels, chips, and macaroni and cheese. These foods are glycemic and raise blood glucose, quickly increasing the demand for insulin production. Zinc is part of the insulin molecule and is depleted, resulting in abnormal taste and taste perception. What develops is an aversion to the flavors in natural foods and increased cravings for highly sweetened foods and those foods containing MSG. (MSG affects the brain's perception of flavor.) The diet becomes more narrow, and nutritional status declines, resulting in more limited food choices. The white diet and vegetable aversion is common among children in Western cultures due to the high exposure to processed and sweet foods. For children with sensory and developmental issues, the aversions are much more pervasive and serious.
There are three potential contributors that lead to the limited appetite, cravings, and food aversions:
The negative effect of this combination can result in faulty messages from the sensory receptors to the brain and dysfunctional interpretation of those messages by the brain. Perception is the "truth" for that person. This is why begging, bribing, and punishing do not and will not work.
The solution is multifaceted. Correction of nutritional deficiencies and elimination of toxic metals are mandatory and involve appropriate therapeutic supplementation based on findings. Foods that cause reactions and/or opiate-like peptides need to be eliminated as healthy, safe foods are introduced and accepted.
How to Go from Yucky to Yummy-The Trojan Horse Technique
For those with texture issues, it is important to adapt the diet to the child's oral and food developmental stage. If textures are a sensory issue, no matter how tasty the food, it will not be consumed. By providing the food in a sensory-pleasing form, the child benefits nutritionally and begins to find mealtime more pleasant and rewarding. Purees are generally helpful. They are better tolerated and can open the door for getting more types of foods into the diet. Many family dishes, including soups, casseroles, or the meat and vegetable main dish, can also be served pureed for the child who has sensory texture issues. In this way, the whole family is enjoying the same meal.
Many of the recipes in this book have been selected to expand nutritional intake, especially using the Trojan Horse Technique-hiding a small amount of the new food (especially vegetables and proteins) within a very well tolerated and acceptable food. Each child differs and, therefore, it is important to identify what foods will work as "carriers" to get the new foods in.
Purees can be made from cooked fresh or frozen vegetables and/or purchased baby foods. If your child is offended by being served baby food, simply keep it well hidden. Create interesting new names for the foods and see that others in the family join in consuming them. The secret to success in introducing these new foods is to combine a small amount with the food the child already likes. For many children, this is the only way new foods can be introduced.
Start with 1 tablespoon (15 g) or less-and then increase when tolerated. Hide the cooked vegetable purees anywhere you can, selecting colors that are not obvious when added to the carrier food. The carrier food needs to be one that the child enjoys. It may even be a food that is being slowly eliminated. Include pureed fruits to improve the taste. Here are some examples of places to hide foods (and even supplements):
The above is an excerpt from the book The Kid-Friendly ADHD & Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet
by Pamela J. Compart, M.D. and Dana Laake, R.D.H., M.S., L.D.N.
Published by Fair Winds Press; November 2006;$24.95US/$32.50CAN; 978-1-59233-223-6
Copyright © 2008 Pamela J. Compart, M.D. and Dana Laake, R.D.H., M.S., L.D.N
Author Bio
Pamela J. Compart, M.D., is a developmental pediatrician in Columbia, Maryland. She combines traditional and complementary medicine approaches to the treatment of ADHD, autism, and other behavioral and developmental disorders. She is also the director of HeartLight Healing Arts, a multidisciplinary integrated holistic health care practice, providing services for children, adults, and families.
Dana Godbout Laake, R.D.H., M.S., L.D.N., is a licensed nutritionist in Kensington, Maryland. Within her practice, Dana Laake Nutrition, she provides preventive and therapeutic medical nutrition services. Her practice includes nutritional evaluation and treatment of the full spectrum of health issues affecting adults and children with special needs.