Sara's Diet



Sara's Diet

Sara’s Diet has developed over the last 10 years to become one of the most successful dietary interventions in autism. Since 1994, over 2000 persons with autism spectrum disorders have implemented Sara's Diet. Many of these improved so much that they can no longer be classified as autistic. Sara herself, Sandra's adopted daughter who was the first to be put on the diet, is now 22, and lives with us in the UK. She is currently attending college and is engaged to be married. Her final report card from her US High School contained only A's and B's - she was an honor-roll student and was enrolled into the US National Junior Beta Honor Society in 1999. And yet her early history, as we wrote in the book 'The Power of Exile - Autism, a journey to recovery' , would not suggest that such an achievement would be possible:

At the end of several months of rehabilitation and speech therapy, as well as continuing in the special education pre-school setting, Sara was again evaluated. The report described her as a ‘child who has made immense strides and can tolerate up to 10 minutes of one activity. She can maintain eye contact for several seconds. She can follow one-step instructions such as ‘look at . . .’.  She imitated some sounds and could sign ‘me’ and ‘more’ with 80 percent accuracy.’ In summary, the evaluation stated: ‘Sara continues to be severely delayed/disordered in her speech/language development.’

 'At three years and ten months, Sara was again evaluated: “Presenting Problem: Sara had been referred for speech and language therapy and it was noted at the time of the clinic that Sara was delayed. Sara was also noted to have a history of seizures, motor delays, no speech, and a question about possible seizures that may still be occurring. It was noted in the clinic that Sara’s behavior is out of control and she is a difficult child to obtain and maintain eye contact with, does not comply with directions and requires much physical intervention. Psychological Evaluation: Sara is a very active and impulsive child whose behavior often lacks purpose and direction because of her significant mental handicap.”

 'At 6 years she rocked back and forth, used parrot talk and echolalia. She still withdrew into her own world most of the day. She continued to do self-abuse, make bodily function noises, laugh hysterically at times. . she would also headbang or bend her fingers back until the tops of her fingers touched the back of her hand. She pulled teeth that were not loose and ripped off a whole toe-nail without a change in facial expression. She was again evaluated by the TEACCH center in the fall of 1993 and was diagnosed as moderately autistic with 18 primary characteristics .'

Sandra's background is in some ways as interesting as Sara's. Her upbringing was an education in working with problem children and later studying food science and nutrition. Her parents were part of a professional parenting group, and fostered over a hundred problem children. Sandra worked in hospitals since age 14, and spent her spare time in the medical library trying to find out what it was that was causing severe allergic-type reactions in her body. She writes: 'In August of 1993, I found the answer to my own food intolerance reactions, a pigment identified as lutein. I was working third shift in the local hospital, and read the article listing the lutein fruits and vegetables, I was awestruck. It was as if the mystery of my whole life was unveiled.'

 'With the insights we had from our rather diverse background, and the resources that were available, we were perplexed that autistic children with such low I.Q. scores were consistently able to manipulate their dietary intake. Even those with no verbal skills at all managed to get pizza, spaghetti or macaroni and orange juice or apple juice on a regular basis. An adult autistic acquaintance plainly stated: ‘Trying to get an autistic individual to eat something they do not want is like trying to get a normal person to eat a hairball’. Also, many of these children worked equipment that would be considered too advanced for children with I.Q. scores in the range they tested, such as VCR’s, cassette players, T.V. remotes and even video games.'

All of the medical resources indicated that treatment for many disorders that were ‘Inherited Metabolic Diseases’ often consisted of special diets and supplements. . . 'I studied and found that to have a balanced diet with this restriction (lutein-free), I would need to include the sources of vitamin A from the non-lutein foods with great care, or else supplement this vitamin. I read research indicating that many who suffer vitamin A deficiency cannot convert precursor beta-carotene to vitamin A. I was studying the pigments, the immune system response mechanisms, the amino acids, pterin metabolism. I wanted to know why my body didn’t work like everyone else’s. I had worked for six years in three different hospitals as a special diets cook, and taken a total of three years of college working towards a nursing degree. Still I used two medical dictionaries when I studied. One of Sara’s doctors was on staff at a hospital/institution for the severely mentally retarded. We had made many visits to her office and my husband’s older sister has also worked with these clients for many years. We talked about the similarities in individuals diagnosed with autism - the similar reactions and behavioral responses after meals.'

'I read an article in an autism newsletter about a newly formed ‘Allergy Autism Group’ and found out about a meeting that was being held the same week as the ‘North Carolina Conference on Autism’. The lecture was given by a researcher/parent, Brenda O’Reilly, who has an autistic child the same age as mine. She was from England and had been compiling information for 9 years. During the past 6 years she had been working with a bio-chemist from Birmingham, U.K. who was compiling extensive information from multiple tests on a large group of autistic children. We stayed after and spoke with some of the people who had also attended. I asked the president of this group if she knew of anyone who had taken their child off ALL the foods that had been suspected of causing metabolic problems in these children. She did not, and thought the task seemed monumental. The documented reports of more than 1000 children who had noticeable improvements after eliminating the foods they had mentioned gave me a challenge I could not refuse.

 'The day after the meeting in Cary, N.C. (Nov. 8, 1994) Sara and I spent the morning calculating the amino acid requirements and RDI (recommended daily intake) of the essential vitamins, minerals and trace elements for her height and weight, and she was started on her special diet. For the previous year I had kept daily charts of the nutrient content of my own diet, and so I was keenly aware of the food combinations needed to make the diet nutritionally balanced.

 'Sara was already virtually gluten free, limited in her intake of dairy products to dairy fats which are very low in casein, and she was additive free and got no food dyes. I had been unwilling to limit her diet any further without clear evidence that there was a possibility of noticeable improvement. Brenda O’Reilly’s presentation convinced me that diet played a primary role in autism symptomology.

'Within two days of removing the pigmented fruits and vegetables, Sara walked into the living room and saw a rainbow reflecting off a glass of water. She said ‘Awe what a beautiful rainbow’ . She had never spoke of anything in an aesthetic manner nor had she used such emotional expression previously. On the fourth day of her diet we attended the ‘N.C. Conference on Autism’. I packed Sara’s special lunch and off we went. I learned many things at the conference, but as much of it came from speaking with other parents as from the lectures. When I picked Sara up from the playroom where she had spent the day with many autistic individuals, I was given some original drawings Sara had done and I was perplexed. One drawing was of an ear of corn, symmetric and outlined, colored perfectly with bright yellow kernels and green leaves. After questioning the care-giver, I was convinced Sara had done the drawing. Sara had never chosen to do an original drawing to the best of my knowledge and she did not like corn. On the way home she talked more freely than I could ever remember. Mom, I like fall the best’. ‘Why?’ I asked. ‘I like orange leaves’ she simply answered, as if we had interactive conversations every day. We stopped at a restaurant when we were nearly home. On the walk across the parking lot, Sara grabbed my arm and said ‘Look Mom, I’m walking like you!’ and she was walking like me. Not in the odd roll-off-the-balls-of-her-feet with her elbows as high as her face, hands dangling, bouncy walk. I had been able to spot this child a football field's distance away just by looking for her bounce. Not only did I not think she was capable of walking differently I did not think she was aware that she walked differently from everyone else.'

'Sara, who couldn’t make a sandwich, open a soda or cross the street in the fall of 1994, played soccer in March of 1995. She also played softball, made the competitive cheerleading squad and proudly wore the 'Homecoming Crown'. She attended the formal dance with her very first date, represented her 5th grade class in the county spelling bee competition, and had made the Honor Roll in the fall of 1995.

'Is Sara cured? No. If she eats one strawberry, she cannot add 10+10. Depending on her food intake, there have been regressions so severe she has lost the ability to speak. But, as long as we maintain her diet, she is a capable, loving, almost ordinary young woman.'