This Article reprinted with permission from Living Without Magazine.
When you see Kaitlyn Ford with her friends, you might not notice anything unusual about her. If she stands out at all, it’s most likely because of her long red hair and bright blue eyes. It still amazes parents David and Kathy Deery Ford of Norwood, Massachusetts, that 6-year-old Kaitlyn fits in so well, since just a few short years ago she was lost in her own world, unresponsive to anyone but her mother.
Kaitlyn was only 19 months old when her mother began to worry. The toddler was a terrible sleeper, waking every two hours thirsty and drenched in sweat. She had bright red cheeks and chronic loose bowels. Most troubling, she had very little language. As she approached her second birthday, Kaitlyn spoke just a few words and used them inappropriately.
Kathy knew that all children develop at their own pace, but it troubled her to see how different Kaitlyn was from her sister Nicole, who was 2 years older. Family members were worried about Kaitlyn’s minimal language, low muscle tone, lack of eye contact and her obsession with playing with hair—her own and any she could get her hands on. Shortly before the little girl’s two-year check up, Kaitlyn’s aunts confronted Kathy and David.
“My sister and David’s sister were really concerned and they decided to talk to us together. They told us they were afraid that something was really off with Kaitlyn and they suggested it was autism,” says Kathy. “I’d suspected for a long time that something was wrong but it was easy to let David talk me out of it.”
With David still insisting that Kaitlyn was fine, the parents consulted Kaitlyn’s pediatrician, who suggested an evaluation. Kathy scheduled it immediately and two child development specialists came to the Ford’s home. As they tested Kaitlyn, they were concerned that they couldn’t engage the little girl in play or get her to make eye contact. She wouldn’t use any of the age-appropriate toys they brought. Of most concern, however, was how little language Kaitlyn had.
Kathy watched the evaluation anxiously. “I’d been reading about autism ever since my sister brought it up. I knew it would explain Kaitlyn’s behavior but I was hoping they’d assure me that it wasn’t autism. It was really frustrating but mostly I was just scared,” says Kathy. “They wouldn’t give me a diagnosis. All they would say is that we needed to see a developmental pediatrician.”
Since every specialist in the area had a long waiting list, Kaitlyn’s physician stepped in and made some calls. Within three weeks, the family was sitting with Rita Delollis, MD, a developmental pediatrician practicing in Braintree, Massachusetts. As part of her assessment, Delollis wanted to watch Kaitlyn playing and interacting with her family and with toys. The doctor offered Kaitlyn a family of dolls. “But Kaitlyn just didn’t understand that the dolls represented a family—or people for that matter. They were just objects to her,” says Kathy.
Next Kaitlyn was offered blocks. She immediately sat down and began to build a tower. This didn’t surprise her family, because building block towers was Kaitlyn’s only form of playing.
“She was obsessed with making block towers,” Kathy says. “But if anyone disturbed the towers, she would throw epic tantrums and cry hysterically.” Kathy purposely knocked over the tower so that Delollis could see Kaitlyn’s reaction.
After a brief observation, the doctor pulled no punches. Although she hesitated to label so young a child, she told the Fords that Kaitlyn had PDD (Persistent Developmental Disorder), a developmental disability on the autism spectrum.
After making the diagnosis, Delollis left Kathy and David alone to talk for a few minutes. Kathy, while devastated, had another problem: David had not been reading about autism like she had and he didn’t understand the gravity of the news.
“It’s okay!” he told Kathy. “She doesn’t have autism!”
When the doctor returned, Kathy said to her, “You have to tell him what this means.” Gently but firmly, Delollis explained that PDD is a form of autism.
“David was simply crushed,” Kathy says. “He’s a funny, happy-go-lucky guy—the class clown. When he finally ‘got it,’ he broke down and cried,” Kathy says. “In a way, it was easier for me to hear the diagnosis—I was expecting it. But watching David process the news broke my heart all over again. It made it all so real.”
The doctor helped them formulate the next steps for Kaitlyn’s treatment and care. Together the parents resolved to do everything in their power to “bring Kaitlyn back.”
In some ways, the Fords were fortunate. While many ASD children are not diagnosed until after the age of three, Kaitlyn was evaluated by a knowledgeable doctor when she was two. The doctor explained what services were needed and stressed there was no time to waste.
The standard treatment for ASD children is Applied Behavior Analysis (ABA). This approach generally involves therapists who work intensely one-on-one with a child, teaching skills in a simple step-by-step manner. Initially, therapists use formal, structured drills. Later, after progress has been made in “learning to learn,” sessions shift toward applying these general skills to other situations and natural environments.
ABA was first proven effective in 1987 by Ivar Lovaas, PhD, at the University of California, Los Angeles. Today, ABA programs are widely accepted as therapeutically beneficial for ASD children, recommended by both the American Medical Association and the U.S. Surgeon General.
ABA techniques are particularly helpful in teaching non-verbal children to talk. Experts generally recommend that ASD children receive 20 to 40 hours of ABA therapy per week, depending on whether the child is in school or not.
Fighting for Kaitlyn
David, a software salesman, used persuasion and persistence to obtain ABA therapy for Kaitlyn. He called Waltham Early Education Consultants almost daily to discuss his daughter and “her urgent needs.”
“At first, they approved 4 hours of ABA a week but David absolutely haunted them,” Kathy says. Within a few months, Kaitlyn was receiving 20 hours a week and later her treatment time was increased again.
Kathy went online looking for more information. When her search on “autism” came back with over 500,000 hits, she was completely overwhelmed.
“It’s a lot like trying to take a drink from Niagara Falls,” she said. “I didn’t know where to begin.” Opting to go “low tech,” she headed to the library. There she found several books written by mothers of children with autism, including Karyn Seroussi’s Unraveling the Mystery of Autism and PDD (Random House). Reading Seroussi’s story, Kathy became transfixed with the striking similarities between Seroussi’s son, Miles, and Kaitlyn. Seroussi had successfully treated Miles’ autism symptoms by putting him on a gluten-free, casein-free (GFCF) diet.
Kathy became convinced that she should start Kaitlyn on the diet but David balked, calling the idea “insane” and a waste of time and money. He argued the diet would be too difficult to follow, that it wasn’t nutritious and that it would risk worsening Kaitlyn’s situation. The couple fought about it for weeks.
Frustrated and furious, David went to his mother for advice on how to bolster his argument. To his surprise, his mother sided with Kathy. “Your wife is trying to help your daughter. Do everything you can to support her.” When he complained about the cost, she handed over her credit card. “Use this,” she said.
But David remained stubbornly unconvinced. Kathy returned to the Internet, looking for backup. As she searched for more evidence, she stumbled across an article on the diet that described symptoms so similar to Kaitlyn’s that Kathy found herself shaking as she read it. She immediately e-mailed the information to David, who finally came on board.
Eating for Health
For over 30 years, parents of ASD youngsters have reported improved behavior when gluten and casein are eliminated from their children’s diet. These proteins have been shown to be highly immune-reactive in ASD children, especially when a child also has gastrointestinal symptoms.
As long ago as 1971, researcher M.S. Goodwin documented abnormal brain responses to gluten. A decade later, other researchers showed that children who maintained a gluten-free, casein-free diet showed improved cognition, language and behavior. It’s now believed that certain peptides (amino acid chains) from gluten and casein can bind to opioid receptors in the brain, causing a powerful effect on behavior. Symptoms include “zoning out,” aggression, self-abuse and constipation or diarrhea. These peptides appear to cause trouble for ASD kids because of improper digestion and gut inflammation, common problems in this population.
Although some physicians still caution against dietary intervention, several promising studies are underway and vast anecdotal evidence shows that removing gluten and casein can be helpful for many children.
The Autism Research Institute of San Diego tracks the efficacy of many treatments. Over 60 percent of its respondents report improvement from dietary intervention. TACA, a California support group, reported a better than 80 percent positive response from the diet, based on a survey it conducted of over 14,000 families. For some children, improvement is slight. For others, it is significant.
The challenge of the GFCF diet is that most ASD children have a limited list of foods they will eat. Because Kaitlyn was not very picky, making the switch was easier for the Fords than it is for many families. Kathy’s mother cares for Kaitlyn during the day and her cooking is simple.
“Mom is Irish and she eats mostly meat and potatoes. She didn’t have any problem following the dietary rules I gave her. The only difficulty was cutting out the fast food and junk, which we didn’t need anyway,” Kathy says.
Once on the diet, Kaitlyn made impressive progress. In just two weeks, she went from no appropriate language to ten words, used properly. Her eye contact increased and her tantrums diminished. For the first time, Kaitlyn noticed that she had a big sister. Nicole was thrilled to finally be able to play games with Kaitlyn. Together they worked on vocabulary drills to help Kaitlyn catch up on the school-related skills she’d been missing.
After a month on the diet, Kaitlyn woke less often and was no longer soaking with sweat during the night. After two months, she finally had solid stools and relief from the painful intestinal gas from which she had always suffered. As time passed, she began sleeping through the night.
Kaitlyn’s pediatrician noted these gains and was happy to work in partnership with Kathy. Although trained in traditional Western medicine, the doctor was willing to explore treatments for yeast overgrowth and food intolerances, problems often seen in ASD children that can affect behavior and cognition. Both women became convinced that Kaitlyn was healthier than she had ever been.
A Bright Future
Kaitlyn, now age 6, has been gluten and casein free for four years now. The little girl must also avoid eating sesame, coconut, soy, corn and red dyes, all of which cause her to have physical reactions, such as heavy perspiration, red cheeks and diarrhea. She attends a collaborative kindergarten class, which includes both typical and special-needs children. School staff believe that Kaitlyn would do fine in >64 regular classes and the school is anxious to mainstream her. But Kathy has decided not to push it for now.
“I want to give Kaitlyn a little more time to continue to catch up with her peers,” she says.
If you ask Kathy about her daughter, she says, “You really can’t pick her out of a crowd. She still gets over-excited sometimes but she plays normally, speaks very well, expresses her own ideas and best of all—she has friends!”
Kaitlyn continues to undergo regular weekly treatment—ABA, as well as speech, physical and occupational therapies—all of which have been important to her recovery. But Kathy insists that without the GFCF diet, none of these interventions would have helped as much.
“Kaitlyn was too spacey to really benefit from ABA or other therapies,” Kathy says, “She was lost to us and the diet brought her home.”
This Article reprinted with permission from Living Without Magazine. © 2011 Belvoir Media Group, LLC. All rights reserved.
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