Power of Exile

The Power of Exile -
 Autism, A journey to recovery



Contents


Introduction: Sara’s Diet
and the IDEA


PART ONE –
SARA’S STORY

  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
PART TWO – EXILE
  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
PART THREE – RECOVERY
  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
EPILOGUE
Epilogue


From: I believe in miracles
It could only be Divine intervention that brought Sara and I together. I learned the power of food and nutrition from my own experiences and the power of the environment from foster children and Sara. Together a greater power would help us to use what we had learned to help others.

‘Sara’s Diet’ began November 9, 1994.
Within two weeks:
1) Her oppositional behavior dissipated to a normal 11 year old level, flaring only during sibling rivalry.
2) Her inappropriate laughing and giggling subsided except for two 4-hour periods directly corresponding with dietary infractions (wheat).
3) Her sense of danger became measurably increased to typical 11-year-old standards. Her apparent insensitivity to pain became replaced with average complaints to typical discomforts. There have been NO incidents of self-abusive behavior since her diet was changed and NO periods of withdrawal into the autistic psychological state that she previously often entered, in which she was unreachable by our attempts to communicate with her.
4) She initiated interaction with family members and peers, including: sitting next to siblings to watch TV and game playing (checkers and chess). She made us aware of her desire to participate in competitive sports and exhibited skills which indicated she could do so successfully. She has joined the indoor soccer team and is doing great. She is trying to decide between baseball and softball. With her new-found interests she is leaning towards the co-ed baseball, whereas we are pushing towards softball with same-sex typical role models for her to develop friendships in the little time she has left to fill in so many blanks before entering her teenage years.
5) Her use of verbal language became normal and interactive, even to the point of causing her to blush initially when she became embarrassed by her excessive elaborations about daily events and interactions with classmates. Her intonation and expressive capabilities no longer have the mechanical qualities and are spontaneous and original.
6) She voiced concerns over distressful situations for family members and peers.
7) Her autistic gait dissipated within 4 days.
8) She was running and walking in a typical 11-year-old gait.
9) Her perception became clear as did her writing and drawing, replacing the odd distorted drawings and overlapping letters we had become accustomed to.
10) Her rocking decreased greatly and became occasional after 3 months, with 3 to 4 days passing between episodes of brief periods of rocking lasting only minutes.

She also: voiced references using aesthetic choices; increased her assertiveness and began to try things she had refused to attempt prior to the implementation of  ‘Sara’s Diet’ with the strict regulation of nutrient intake and removal of the colored fruits and vegetables: rolling her hair; opening a can; coloring for fun; division; fixing her own cereal; choosing her clothes; folding clothes; learning to do dishes; taking out garbage; care for the pets; using the stove, blender and microwave.
  In addition to her new skills, she was able to: explain behaviors and events going back to age 2 using specific details and dates, including naming all the children from the developmentally delayed program she had attended; recounting field trips with same and even naming the foods the other children had eaten while on these field trips; giving detailed accounts of specific abuses that had created anxiety for her when she was exposed to stimuli that reminded her of those past events, proving to us that, like Temple Grandin states in her accounts of childhood autism experiences, although they do not appear to have reasoning skills nor coherence, they in fact are aware of the world around them and are simply unable to respond to it, much like a person under the influence of anesthesia. She no longer requires a schedule, nor does she approach strangers to ask repetitive questions about birth dates, addresses, or phone numbers.

Although Sara had no obvious signs of allergy, I knew that many allergic reactions take place internally (smooth muscle reactions) and that these reactions have the potential to create metabolic chaos. It had taken me from 1969 to 1993 to find the answers to my own food intolerances. In the Journal of the American Dietetic Association (March 1993) was an article entitled ‘Carotenoid content of fruits and vegetables: An evaluation of analytic data’ and another one entitled ‘The development and application of a carotenoid database for fruits, vegetables, and selected multicomponent foods’. As I read the foods which were listed to contain beta-cryptoxanthin, I was amazed that these foods were the ones which produced diarrhea and burning of the skin if I ingested them, yet I craved mango as a child so much that my grandmother would peel it and carefully place the fruit on my tongue, being certain not to let it touch my face or lips, knowing the next day I would suffer diarrhea. I had the same reaction with those scrumptious fried papaya pies served at the local mini-markets in downtown Miami, and even after marriage, I chose one day a year when mango was in season. I would buy the heavenly ripened fruit and wait for my husband to peel it and bring me a large slice of chilled mango, knowing the next day I would pay for my indiscretion. Then my eyes turned to the list of foods containing lutein pigment, and all the pieces of my ‘food intolerance’ puzzle came together. I removed all lutein and beta-cryptoxanthin foods from my diet. I no longer have to worry about stomach cramps, incoherence, altered depth perception, profuse sweating, diarrhea, spontaneous incontinence, and I don’t have to carry allergy medication, Alka-Seltzer and anti-nausea medications every time I leave  home.

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 that 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 had I never thought that she was capable of walking differently, but I was not even aware that she was aware that she walked differently from everyone else.
  I cried many happy tears over the changes in her those first two weeks. Every day we watched miracles unfold. Simple things brought overwhelming emotion: on the sixth day I took her to school as usual and apologized for forgetting her chapstick. She threw her hand in the air in a nonchalant manner and said “It’s O.K., don’t worry about it.” as she slid out of the van, swung her book-bag over her shoulder and walked off across the school yard. Previously she had never comforted me or even acknowledged that I had feelings; and she had always eased her behind to the floor of the van before stepping out before turning to face the van, working her arms slowly into her book-bag straps while rocking back and forth and then turning to bounce her way to class.   


POE