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Asperger Syndrome Recovery Story

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By Cindy Kelley:

July 22, 2001


My name is Cindy Kelley. I am a former special educator and mother of two sons. My oldest son is eight years old and has Aspergerís Syndrome. He was on the gluten-free, casein-free diet for one year. Throughout the year, I also had to remove eggs, corn, soy, and many other foods. Any diet infraction consistently resulted in a bright red bottom, atypical behavior, and wetting. Behaviors lasted one to three days and consisted of unexplained anger, aggression, sound intolerance and/or unresponsiveness. Usually the behavior pattern was a day of lethargy and unresponsiveness followed by two days of anger and aggression, with sound intolerance throughout. Additionally, a diet infraction was usually followed by red ears.

In April 2001, I invited Devin Houston, a Ph.D. biochemist, to speak to a local GFCF diet group I was in. Dr. Houston was a professor at Saint Louis University School of Medicine, has an extensive background as a researcher in the dietary supplement industry and was the formulator of SerenAid, the first digestive enzyme product for autism. He founded Houston Nutraceuticals to produce new and unique digestive enzymes. Houston's two products, Peptizyde and HN-Zyme Prime, were released to market the day of our meeting. Dr. Houston explained how the digestive enzymes would break down gluten, casein, soy and other food proteins in the stomach. If taken with every meal, the enzymes would prevent the "opioid effect" that we so feared. On April 21 my son took the enzymes for the first time with a complete restaurant meal. We saw no ne of the previous reactions typical of food infractions.

I took all the information about the HNI enzymes to my sonís pediatrician. She sent a request to the school that the enzymes be given with any diet infractions. We continued to give him the enzymes with each meal and allowed more planned infractions. We saw no red ears, no red bottom, no unresponsiveness, no unexplained anger and no aggression. In fact, we started seeing an increase in many areas of development. At a school conference, my sonís teacher and speech therapist insisted they were seeing significant changes that they attributed to the enzymes started two weeks earlier. At four weeks, with a much-expanded diet, my sonís teacher called me with more increases in behavior. She saw a new enthusiasm for learning, a large increase in problem-solving skills, significantly more peer interaction, and an overall happier child. At this point, my son was eating a largely expanded diet with still more exposure to gluten and casein.

Within a few more weeks, my son was completely off all previous dietary restrictions. Not only do we not see any of the problem behaviors and skin reactions of the past, we now see the following behaviors on a consistent, daily basis:

Eye Contact: Increase of at least 500% since taking the enzymes. Eye contact now could be categorized in the "normal" range.

Sound Tolerance: Previously could not tolerate brotherís voice about 90% of the time and either had to leave the room or would scream at his brother. This is no longer observed. He now responds typically to his brotherís sometimes excessive talking.

Initiating Conversation: Pre-enzyme, conversations were almost exclusively about his narrow field of interest (Legos, computer games). Now initiates conversations about a range of topics. Asks questions that reach outside him, such as, "So, Mom, did anything wonderful happen to you today?" and "What did you talk about while I was gone?"

Obsessiveness: No longer obsessed with Legos. Pre-enzyme, would always have a Lego flyer, book or instruction manual in his hand. He read about Legos almost all day. Legos are now a favorite hobby, but not an exclusive obsession. Previously would become angry if not able to focus on Legos. Now asks to do a variety of activities.

Affection: Gives more spontaneous hugs, says, "I love you," more. Overall, significantly more affectionate with parents and grandparents.

Empathy: Shows genuine concern for brother, which was not seen before enzymes.

Self-stimulatory Behavior: Hand-flapping decreased significantly, especially in brightly lit stores. Since adding back zinc the last few days, stimming has decreased even more. Overall decrease of at least 50%.

Self-injurious Behavior: Biting and hitting self when angry or stressed decreased about 75% after enzymes. Since adding back zinc, these behaviors have not been observed.

Transitioning: Previously, changing activities would usually result in back talking or tantruming. Since enzymes, these behaviors have decreased about 80%. Now back talks in a more typical way, not as an automatic and exaggerated response to all changes and requests.

Desire for Physical Activity: Pre-enzyme, had to be forced to go outside to play. Now compliant and even enthusiastic at the suggestion at least half the time.

Skin Color: Skin is less pale. Relatives comment he looks healthier. Circles under eyes have lessened. Face looks more filled out.

Adherence to Routine: Significantly better able to handle changes in daily routine, such as wearing mismatched pajamas or brushing teeth in a different bathroom.

Stools: Stools are firmer, no longer light colored.

Interaction with Brother: By far, the most notable change. Pre-enzyme would occasionally run through the house with him, sometimes play with Legos with him for a total interaction time of about 15 minutes daily. Since enzymes, interacts with his brother throughout the day. Now teaches him to play board games. Asks his opinion about topics in books, encourages him to watch videos together. Points out observations. Explains his ideas. Shares plans to play tricks on parents. Tells his brother jokes. Giggles at his brotherís jokes. Fights in a typical sibling way, not in a sound intolerant, screaming "Go away from me" way. After enzymes, asked to sleep in his brotherís room for the first time. Tolerates his brotherís tantrums and misbehavior exceptionally well.

Waking Up: Pre-enzyme, came downstairs in a grumpy mood almost all of the time. Now consistently comes downstairs in a pleasant mood.

Awareness: Significantly more aware of the actions of others. Since enzymes, has started eavesdropping on our conversations. No longer appears detached. Has a better awareness of safety issues.

Problem Solving: Since starting enzymes, problem solving is no longer a weakness. He is able to reason better and does not give up readily as seen with pre-enzyme behavior. He is more aware of consequences and acts accordingly.

Short-Term Memory: Now remembers requests and general information better.

Humor: His humor is now more sophisticated. Recognizes the subtleties of humorous situations.

Vocal Quality: Pre-enzymes, voice was unusually high-pitched. His voice is now significantly and more appropriately lower.

Prosody: Pre-enzymes, voice was more flat. Now has a natural rise and fall within each sentence.

Rate of Speech: Pre-enzymes, voice was slow and measured. Now has a faster, natural rate of speech.

Disposition: Rarely exhibits the typical pre-enzyme grumpy mood. Significant increase in overall happiness.

UPDATE: I have since discovered that my son can now tolerate only limited quantities of highly phenolic foods and peanuts. I do find he can tolerate these foods now better than before enzymes, though. He currently takes Peptizyde and HN-Zyme Prime from Houston Nutraceuticals, and calcium/magnesium.

November 7, 2001

Tonight was my sonís parent/teacher conference and IEP for speech/language services. One year ago he was evaluated by the school district. He is eight and has Aspergerís Syndrome. At the time of last yearís evaluation, he was on the gfcf diet and was also soy free, corn free and off many other foods. At that point, he had been on the diet for over six months and continued another six months for a total of a year. We saw many significant gains from the diet. He has been taking the enzymes from Houston Nutraceuticals since late April and has now been off the diet, with enzymes, for over six months.

To compare his progress since his evaluation a year ago and to try to objectively assess the effectiveness of the enzymes, I went through his testing and wrote down each weakness. I asked the classroom teacher and speech therapist for a yes or no on these previous weaknesses. Keep in mind that each of these is listed because it was a deficit assessed through testing before enzymes. When the teacher simply said "No", meaning not a concern or not observed, I wrote, "Not a concern", or "No longer observed" to clarify. A few of these are repetitive since the observations were from numerous assessment tools.

Second Grade, age 8
Previous Weaknesses Observed/Teachersí Current Observations:

1. Stares off or appears to look through people for prolonged periods: No longer observed.

2. Fascinated with screen savers on monitors: No longer observed.

3. Frequently scrutinizes the visual details of objects and can become distracted by visual stimuli in the environment: No longer observed.

4. Frequently lacks a startle response and does not usually localize toward the sound: No longer observed.

5. Does not always respond to his name: No longer observed (not a problem).

6. Hyper and hypo responses to sounds: Much better.

7. Easily distracted by auditory stimuli: No longer observed (not a problem).

8. Twirling, hand flapping: No longer observed.

9. High tolerance to pain: No longer observed.

10. Difficulty with gross motor such as kicking, throwing: Yes.

11. Writing is difficult: No concern.

12. Often does not respond to gestures for hi and goodbye: Sometimes.

13. Voice lacks appropriate inflection and is high in pitch: No concern, much better.

14. Sometimes displays slow processing in that he may respond to a question after other questions have been presented: No longer observed.

15. May continue an activity long after it is no longer appropriate: No longer observed.

16. Difficulty with abstract learning: A little bit Ė some difficulty with math logic such as, " Jack makes $2.75 and hour and works for two hours. How much did Jack make?" This was the teacherís example. Usually no concern, though.

17. Generalizing skills and making associations appear difficult for him: No longer observed.

18. At times may struggle with concept retrieval: No longer observed. Understands well.

19. Does not typically respond to the facial expressions of others: No concern, "I think he would understand the expressions," classroom teacher.

20. Has difficulty with appropriate play skills and social interactions with peers: No longer observed. Seeks out children to play with.

21. May engage in ritualistic behaviors, such as twirling: No longer observed.

22. Very attached to the computer: No longer observed.

23. Would prefer to be involved with inanimate objects, such as the computer: No longer observed.

24. No social smile: Not a lot of smiling, but seems content.

25. Avoids eye contact: No longer observed, not a concern.

26. May learn a task but forget it quickly: No longer observed.

27. Does not follow simple commands: No longer a problem, follows commands.

28. Has poor visual discrimination skills: No longer a concern, does well.

29. Is not responsive to othersí facial expressions: No longer a concern, does ok.

30. Lacks a startle response: Donít know.

31. Lacks friendships: Not true, he has friends.

32. Often appears anxious: No longer a concern.

33. Seems unaware of dangerous situations: Donít know.

34. Stares into space for prolonged periods: A little, a tiny bit.

35. Eye contact: Could be better, but not a problem, has improved significantly.

36. Initiating interactions with peers: Not often, but some.

37. Initiating interactions with adults: Yes - observed.

38. Distracted by computer monitor: No.

39. Sit properly at desk (during an observation, sat with legs up in chair): Now sits appropriately.

40. Voice affect: Improved significantly. Rate is a little slow.

41. Handwriting: A weakness, but not a big concern.

42. Walking in line: No longer a problem.

43. Following directions: No longer a concern.

44. Following routine: No longer a concern.

45. Eating lunch: No longer a concern.

46. Sedentary: No longer a concern.

47. Tolerating change: Does fine, no longer a concern.

48. Mental math: Not a concern, except some difficulty with abstract math as mentioned above.

49. Pragmatic language: Only concern now in understanding intentions of others, but not a big problem.

50. Sentence structure: Perfect, no longer a concern.

51. Word structure: No longer a concern.

52. Speaking abruptly: No longer a concern, "That is just gone since the enzymes."

53. Articulation /f/ for /th/, /sh/, /ch/, /s/, /j/ distortions: Occasionally missed in spontaneous conversation.

54. Slow rate of speech: A little slow.

55. High pitch: No longer a concern.

56. Reading unspoken verbal cues/body language: Appears to understand, no longer a concern.

57. Expressing personal thoughts and feelings: Could do more, keeps feelings on the back burner.

58. Understanding of how his interactions are perceived by others: No concern.

59. Social Relationships within the school setting are not generally within age appropriate expectations: No longer a concern.

60. Difficulty when required to sit and listen, may react passively when asked to complete a familiar task: No longer a concern.

The teacher shared that over the summer she thought to herself, "Oh, Iím going to have THAT child [loud sigh like when you feel hopeless]." "But," she added, "the progress is unbelievable." "The problems are just not there this year." She told us our son is religious about taking the enzymes and wouldnít dare eat even the tiniest treat without them. This is a huge contrast to what we went through with his resistance to the diet. The teacher also shared that our sonís reading skills and more importantly comprehension are excellent. She said his critical thinking skills on the current reading test were also excellent.

The speech therapist also commented on the improved critical thinking skills and referred to the reading test as proof. She had some concern about eye contact, but said that she wasnít sure how much of a problem it was because he appears not to be paying attention at times, but actually is and can answer all questions. She said she thinks he is not always looking at her because he is always trying to do two things at once and can, which very few other children can do. Although he still stims at home at times, the speech therapist said she no longer sees him stim at school.

The speech therapist also said she worked on my son's high-pitched voice last spring using a computer program. However, he did not progress until starting the enzymes. She said she believed the enzymes were responsible for the improvement because it was immediate. She also shared that my son can now follow directions the first time and directly attributed this to the enzymes. She said the difference is "incredible". Before enzymes she used to say everything three to four times and then have to touch him and maybe say it again and then perhaps he would follow through. Now she says directions only once. "Incredible," she said, at least two more times.

And so, to Dr. Devin Houston, I say -- thank you, you helped my son, and I will make sure he never forgets that.

Cindy Kelley
Former special educator
Mother of two sons, now ages 11 and 7

[my thanks to Cindy Kelley for allowing me to use her son's story on my site]

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