At one point in her son’s seven-year life, Anna Latif wondered whether he would ever recognize her as his mother.
Diagnosed on the middle-to-low spectrum of autism, Latif’s son went to traditional doctors and followed the traditional treatment for the disorder that has no cure.
But after two years, Latif wasn’t satisfied with the results or what she saw in the autistic teenagers who followed the more common treatment.
“I know my son had a lot more potential than that,” she said.
So she dug deeper into the research and came across information on an alternative and controversial biomedical treatment. When she took her son to a Defeat Autism Now (DAN) doctor, she learned her son had a host of allergies and high levels of toxins in his body.
She changed his diet to gluten-free and casein-free and placed him on a heavy dose of supplements. Gluten is found naturally in wheat and rye, and casein is found in milk.
Latif noticed a change in the first week.
“It was like I turned the lights on,” Latif said.
Today, Latif said her 7-year-old son is a different person. Someone who was once so weak he could barely walk now rides his bike, swims and plays basketball. He is at the top of his second-grade class in reading and loves books.
“I am literally rebuilding his body,” she said.
Dr. Jeremy Baptist, a DAN-certified doctor in Overland Park, said he continues to see an increase in parents looking at diet and nutrition as a way to improve their child’s autism symptoms.
An allergist, Baptist first noticed a link between allergies and autism in the 1980s when adult autistic patients would come in his office with hay fever. During the next decade, the link between environmental factors and autism grew stronger.
“I like to think of children as the canaries in the coal mine. They are the ones that are reacting to various toxins in the environment,” he said.
Weighing treatments
In the world of autism, the question of whether to treat through diet is controversial, with parents staking positions with religious-like fervor.
So far, scientist have not uncovered what causes or cures autism. So parents are often left to the advice of physicians, word-of-mouth antidotes from fellow parents and Internet research in determining what treatment is best for their child.
“It is very hard for parents to not try and do everything,” said Dr. Kathryn Ellerbeck, a developmental behavioral pediatrician with Kansas University Hospital’s Center for Child Health and Development.
When parents ask about the gluten-free and casein-free diets, Ellerbeck tells them she has never seen anyone cured by it.
But, she also said the diet is a reasonably safe one. It also helps to keep data and have someone objectively evaluate whether any differences are apparent in the child.
“It is hard to do and it is really not a diet that a lot of kids like,” Ellerbeck said.
So far, clinical research has not shown that changes in diet have had an effect on autism, said Dr. John Colombo, a psychology professor and director of KU’s Life Span Institute.
Two clinical research trials are under way, one in the United States and the other in Europe, Colombo said.
“The evidence out there isn’t enough; it wouldn’t convince the average scientists to say it is effective,” Colombo said.
Maria Brockman, of Lawrence, tried the diet for her autistic child and didn’t see a difference. While she knows of parents who have had success with it, Brockman said for her it didn’t work.
Ellerbeck said parents shouldn’t feel bad about not seeing results.
“They feel guilty for not being able to do all the things they read out there on the Internet. It is unfair to these families,” she said.
Success for some
Baptist said most of his patients are treatable. However, he said, the best results occur if autism is diagnosed when the child is young.
He points to one patient he has treated who was “very autistic” and nine years later is now a popular, outgoing teenager who was elected to student council and plays soccer.
“It’s a matter of finding out what is causing the problem and treating it,” he said.
Catrina Loney also has had success. At age 2, her daughter Isabel, while smart, wouldn’t make eye contact, imitate animal sounds or ask the endless number of questions that toddlers do.
Three months into preschool, Isabel’s teacher mentioned that something wasn’t quite right. So, Loney set up an appointment with doctors at KU Hospital. She was put on an 8-month waiting list. In the meantime she came across the book “Louder than Words” by Jenny McCarthy, an actress who saw her son’s autism improve when his diet changed.
“I stayed up all night reading. And, I just clicked with it,” Loney said.
Soon afterward, she started her daughter on a gluten-free and casein-free diet. The first week, Isabel’s eye contact improved and by week three she was fully engaged and her conversation increased.
Loney saw so much difference that she canceled her appointment at KU Hospital, so Isabel was never officially diagnosed.
“When you’re a desperate mom, you want your kid to be fixed,” Loney said. “So, you do it all and figure out later what works.”
Comments
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RogueThrill (anonymous) says…
1 Tip of Flat Belly: Autism Diet
totealongshaker1 (anonymous) says…
"I like to think of children as the canaries in the coal mine ..." i'm not entirely comfortable with this analogy but whatever. i have worked with and am related to people with autism and it can be very taxing for families.
if the diet helps, fantastic!
fuel_for_the_fire (anonymous) says…
Hey Christine - "word-of-mouth antidotes"???? I believe the word you are looking for is anecdotes.
Unbelievable! Does the LJW even have a copy editor?
mom_of_three (anonymous) says…
Hey fuel, NO, the word she is looking for was antidotes, because they were looking for cures for autism, an antidote if you will. At least that is how I read it.
We don't want anecdotes to help kids with autism.
ohgeeze (anonymous) says…
I think antidotes, meaning "cure", is the appropriate word in this case.
Take a chill pill, fuel.
ohgeeze (anonymous) says…
mom_of_three, you beat me to it!
persevering_gal (anonymous) says…
I hate to say it, but fuel is right on this being an antidote. There is no scientific evidence in regards to gluten-free diets treating autism. While it may work for some children, what the article fails to express is how many children also receive intensive applied behavioral therapy (at least 40 hours a week) on top of the diet or other types of therapy/medication.
Do not get me wrong, I am very happy for this child's change in behavior, and perhaps it was due to the diet, but every child is different and it does not work for every child. I wish the best for every family who has a family member with autism. I know KU has a couple of great programs on the main campus for children with developmental disabilities in the Dole building.
http://www2.ku.edu/~cdc/littlesteps/
http://www.absc.ku.edu/cdc/
workinghard (anonymous) says…
There is a test for gluten and dairy allergies. Did the test on my daughter. The new gluten, dairy, tomato, and egg free diet made her feel much better. Thank heavens the grocery stores have started stocking many types of foods that are ready to eat or easy to make. Also thankful for Rice Chex.
workinghard (anonymous) says…
Sorry, should have mentioned my daughter was not Autistic. Also, gluten intolerance, according to experts, is not a food allergy actually but rather an inherited autoimmune disease.
fuel_for_the_fire (anonymous) says…
Wow! What exactly are word-of-mouth antidotes from other parents? Let me try this again. If you read the entire sentence, then it only makes sense that the writer is talking about sources of information that parents are seeking, be it advise from physicians, internet research or personal experiences, anecdotes as it were, from other parents.
I am not the one with the reading comprehension problem.
mom_of_three (anonymous) says…
other parents know what fixed their child, an anti-dote to autism, they could say and what to share with other parents. antidote means a medicine or other remedy for counteracting the effects of poison, disease, etc.
autism could be considered a disease, something you want a remedy or cure for.
It may not exactly be what you would write, but I sure would like the anti-dote to autism.
mom_of_three (anonymous) says…
I am not saying a gluten free diet will work for every kid with an autism spectrum disorder, but parents are trying everything to fix their kid or help them with this. I have one with asperger's disease, and I would love to find something to help.