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: Sam's Story
These reports describe our success in implementing a comprehensive in-home program for a boy diagnosed as Asperger’s (PDD). The program was designed from the start to meet Sam's unique needs, difficulties and learning styles. Sam has been described as a very complex child with numerous presenting problems and diagnoses and a history of hospitalization. His school experience has been very difficult, and it was the school system's failure to find an appropriate placement for him that led to his mother's decision to home-school and ask for our assistance.
  From September 1999, we provided Sam with an in-home program using a highly structured behavioral format. We also provided him with a nutritional program based on our work with lutein-free diets in autism. Based on a careful functional behavioral analysis we performed in 10/99 his program was designed to include specific components which are said to be essential for optimal performance and include:
  1. A structured and consistent school schedule from 8:00 - 2:30, six days per week;
  2. A reinforcement system which is clearly understood by Sam and administered consistently;
  3. Regularly scheduled breaks for physical activity based on indices of Sam’s need;
  4. Consistent modification of the length and difficulty level of tasks based on Sam’s tolerance for frustration;
  5. Computer instruction;
  6. Maximization of auditory instructional materials (e.g., books on tape, reading to him);
  7. Minimal levels of stress and extraneous stimulation;
  8. Continuous modification of the teaching setting according to Sam’s variable sensory status and tolerance for stimulation.
Initial emphasis was placed on promoting behavioral self control and later, as behaviors improved, work on academics was begun.

Setting the child up for success - Symptom or behavior?
Setting unrealistic goals leads to the experience of failure. A goal that may be easily attainable in a typical child may be unattainable in an autistic child, especially when what is holding the child back is not a behavior but a symptom of autism, such as under-functioning fine-motor control, or distorted visual perception. Choosing activities as goals which the child already practices regularly and naturally with success to use as the basis of a schedule makes the transition to using effective tools much easier for the teacher, parent or caregiver.
  But if ‘spinning objects’ was targeted as a ‘problem behavior’ and the reward system focused on overcoming this as a primary goal then it is unlikely the teacher or Sam would have a feeling of success or accomplishment.

Breaking down behavioral complexes
The detailed functional behavioral analysis that we use provides us with the insight we need to break apart a behavioral complex -  a group of behaviors which work together to make intervention difficult and make it easier for the parent or teacher to give in. These complexes are part of a coping strategy that the child develops and include power struggle techniques, disruption of everyone’s schedule, creating chaos, etc. They are used very effectively by autists and attachment disordered children. We use a functional behavioral analysis to identify and target the behaviors which are most interfering with Sam’s ability to develop new skills and show us what he can do.

Meeting the child’s needs
Maslow’s hierarchy of needs says that the child must first feel safe, comfortable and fed (satisfied). Sam wants to know that he is not in danger, that he can be successful and that foods he likes and tolerates will be available.

In April, Sam’s progress was again reviewed:
April 26, 2000: Sam does need frequent breaks and stimulating activities. Once Sam enters the classroom he is eager to begin work and complete an activity session which can last up to 45 minutes i.e. computer art, keyboarding and math games. Between activity sets which generally last 10 to 20 minutes Sam gets up to retrieve his motivator i.e. beverage, treat, coins and then returns to the computer for the next set. After a full activity period (3 sets) Sam needs movement and a free time period outside the classroom if possible - during inclement weather alternatives such as swimming at local sports center or indoor electronic darts may be used for movement activities.
  Sam returns to the classroom and again is available to attend to the activity session i.e. hands on art, block building, crafts. Sam will work on a large time consuming project or up to 3 smaller projects both independently (with the preparation and adaptation provided) and 1:1 for more difficult projects. This session is followed by a free time activity and may be outside or inside. Inside games which allow Sam to move about such as electronic darts or Mattel tic-tac-toss may need to be accomplished outside the classroom in the P.E. setting.
  Sam’s third activity period is often reading, phonics and word recognition with short breaks between sets. After the third activity period Sam sometimes requires a short rest period, possibly associated with midday medications.
  The fourth activity period usually includes science, social and therapeutic recreation which result in the need for less motivators when hands on tasks are included which Sam enjoys i.e. gardening, counting coins, playing board games. One to two days per week, usually Saturday and Wednesday afternoon peer activities are included in Sam’s program i.e. simple crafts such as sand art, swimming, board games with direct supervision and 1:1 support for Sam and peer(s).
  Sam is eager to produce stories to go along with his hand-drawn pictures and ‘make a masterpiece’ computer creations. Sam’s fine motor deficits make it difficult for him to select keys on the regular keyboard, so Adaptive Technology equipment ‘Intellikeys’ has allowed Sam to create story boards to go along with his pictures. Sam enjoys playing educational interactive games and as soon as he understands the steps he is eager to say “I can do it myself”; he is particularly eager to start the programs himself and hear the jingles which accompany many programs i.e. ‘Blues clues’ and ‘Dino-spell’. Audio materials, particularly Auditory Integration Therapy (AIT) CD’s have decreased his auditory sensitivity and resulted in the opportunity for additional materials to be added to Sam’s program i.e. ‘Books on tape’. A formal ‘Assistive Technology’ evaluation is scheduled for April 2000. It is anticipated that recommendations for additional adaptive equipment may  result from this evaluation.

By April 2000, Sam could: work on a computer using several different interactive programs; designed and constructed his own picture book wall collage using computer-assisted artwork; recognized and could spell up to 100 words; understood basic math principles (addition, multiplication etc.), participated in craft activities including making gifts, birthday cards, etc. gardening, cooking, housework, shopping, apologized for stepping on someone’s toe, was interacting with his ‘typical’ younger sister in a peer relationship, was fun and entertaining, making jokes and telling stories.

Sam's mother reported:
“A night and day difference” in Sam’s behavior since beginning the home-based program and eliminating lutein from his diet. He is far less aggressive toward and harassing of his siblings. He is less likely to run away. He is significantly more compliant with verbal directives and with his home-school routine. His level of motivation to participate in academic tasks has increased and he earns his maximum reward most of the time.
  Attending abilities have improved as well. He is better able to focus and can do so for a longer period of time. He is reportedly less distractible and less hyperactive. His rate of task completion has improved.
  Emotionally Sam is happier and, having had a greater number of success experiences, more confident in his skills and proud of his accomplishments. Sam’s adaptive behavior skills have also improved. He is able to prepare simple lunches for himself and perform routine hygiene tasks more competently with little or no assistance. He is able to occupy himself independently and productively for increasingly longer periods of time. Social skills have improved as well.