Power of Exile

The Power of Exile -
 Autism, A journey to recovery


Introduction: Sara’s Diet
and the IDEA


  1. Sara
  2. Sandra
  3. The Journey begins
  4. Sara joins our Family
  5. Journal Notes
  6. Impressions
  7. Influential People
  8. Center Stage
  9. I believe in Miracles
  10. Miracles in Abundance
  11. A Second Rainbow
  12. Widening Horizons
  1. World travel on a Wing and a Prayer
  2. Asperger Syndrome (Sam’s story)
  3. Autism: a Causal Theory and Treatment Option
  4. A Change in the Weather
  1. Second Timothy
  2. Turning Blue
  3. Food Intolerance in autism
  4. Sara’s Diet
    1. Introduction to the restricted diet
    2. Essential nutrients from foods
    3. Practical help with implementing a diet program
  5. What is Lutein?
  6. Autism, Pigments and the Immune System
  7. South Africa, World Community Autism Program
  8. Eating disorder in autism
  9. Autism, Origin – A Plausible Theory
  10. Autism, putting it all together

From: Sara joins our family
At home Sara spun in circles; she pushed buttons on the T.V., VCR, and microwave; she flipped light switches on and off every time she encountered them; she ran from place to place; she tripped on the hearth and the steps; she fell down but did not cry; she patted the faces of everyone she came into contact with, harder and harder until we stopped her by holding her wrists; she pulled away, she rocked back and forth, she screamed, scratched our hands and wrestled when being restrained, using every ounce of energy she could manage from her 38 pound body .
  Once we were home with her it was a struggle to keep my eyes on Sara and get the car unloaded. My husband sighed and rolled his eyes in a look of despair. Sara was in a frenzy. She didn’t stop moving, spinning in circles, running into things, tripping over the door step, pushing the buttons, rubbing the walls and flipping the light switches in every room. I tried to hold her and she wriggled, wrestled, banged her head into my chin. I turned her and tried to hold her to me and she buried her chin in my shoulder. I sat her down and she ran, spun; I followed and watched. “Stop, stop Sara,” I requested but there was no indication she heard my words; there were only guttural sounds and maniacal laughter.
  We had dinner. Sara was sat on a tall step-stool. Her plate was fixed and the food was cut into pieces and allowed to cool. We said the blessing. I peeked at her through squinted eyes. First she sat looking away and then she reached out and put her fingers into the glass of tea. She rubbed her thumb across her fingers and felt the cool liquid, then she quickly touched her fingers to her lips. Her tongue came out and she licked her lips and then she spat, waited and then picked up the glass. I watched as she took a small sip and again she spat out the beverage. She waited a second and then drank. The food was touched and then her fingers were touched to her lips. She finally picked up a piece of food and put it in her mouth and then took it back out, waited, then returned the food to her mouth and swallowed. No chewing. She got up and went to Erika’s plate. She reached and got a piece of Erika’s food, put it in her mouth and swallowed. I got up and returned her to her own chair. Later, I described her weird eating behavior to my (foster) brother David and he said it reminded him of survival training in the military.

Upon placing her in bed, the raging began - screaming, kicking, scratching the wall, scratching herself, scratching me. I placed one arm across her legs and one across her chest. I talked calmly to her, I told her no one would get into her bed with her. I stayed kneeled on the floor until she finally slept, 2 or 3 hours after we went upstairs. She slept with her eyes open.
  The night rages lasted for 2 weeks. Of course we did not know they were going to end, so we made preparations for B.J. and Erika to spend the week of July 4th with Bud’s aunt and uncle, 4 hours away. It was early summer and I am still thankful we had the whole summer to work with her before school began.

Our goals for Sara now were language development, interactive play and developing enough skills to pass DIAL screening for placement in a regular kindergarten. Our approach was to talk to her in plain complete short sentences about everything we did. For example I would say: “I am going to set the table”; “I am opening the silverware drawer”; “I am getting out the forks, the spoons, and the knives”; “I’m putting them on the table - a fork, knife, and spoon at Sara’s place;” etc.
  We asked Sara questions, and answered for her with the response we would expect from a young child, for example: “Would you like a banana, Sara? . . . yes, please”. After a week, we added the trick of answering for Sara with the ‘wrong’ response, such as: “Would you like a brownie Sara? . . . no, Sara does not want a brownie”. She protested loudly: “Want one, want one.” We asked her to repeat after us: “Yes, Sara wants a brownie.” She complied with “Sara wants”.
I made alphabet cards, number cards, dot-to-dot pictures and dot-to-dot words. She would give us her attention for minutes at a time, and we made full use of every alert moment. We sat for hours trying to get her to push a ball: “Come on Sara - roll the ball to B.J.” We played for hours until, finally, she reached out and touched the ball. Praise, hugs, claps and cheers were her reward for these simple acts of compliance. This work was stressful for B.J. and Erika, so they received exaggerated rewards too - trips to the movies or ball-park, shopping with aunts, uncles, grandparents, friends and neighbors. We would pay for whole group outings in return for B.J. and Erika’s respite from home. They too were greatly pleased with Sara’s progress, although her behavior in public was still outrageous - she would run if she got the chance, mashed cash register buttons and reached for fire alarms. When she passed elderly men, she would reach for their genitals; in restaurants she would lift her shirt or dress and slide under the tables.
  I started out early one morning to try to get her behavior to a manageable level. I told her what reward she would get for acceptable behavior and held her hand until we reached the desired reward. “Sara, I will buy you this toy if you stay with me and keep your hands to yourself. Look with your eyes not your hands.” She laughed and ran, knocking the wigs off mannequins, hiding under clothes racks: no reward. Next stop she was offered a pretty shirt: no reward. Next stop, she chose a bracelet and carried it through the store without running or causing mayhem. Success! That afternoon we went from store to restaurant to video store to grocery store and by late afternoon Sara was exhausted, her stubbornness subsided. She now held my hand and walked quietly beside me, listening for what new treasures she might get for her calmness.