II hope that some of you are able to utilize this and help aid in the research. There's a brief bio below on the woman who is doing the study and compiling the data. I promise I'll get back to posting more once this
New Country Starcontest with
the band is over (which reminds me, click
HERE to vote!)
Informal Survey on Therapeutic Approaches in Use By Individuals with Autism Spectrum Disorders
Launched March 15, 2007
Please Respond by April 15, 2007Three Ways to Respond: Email to: info@bethclay.com Fax: 1-202-318-7557 or Mail: 3470 Olney Laytonsville Road #187, Olney, MD 20832 USABeth Clay became involved in autism policy in 1999 when she led the Congressional hearings and investigation with Congressman Dan Burton. Now in the private sectgor, she is conducting an informal survey to learn more about the therapies that families living with autism spectrum disorders are using. The findings of this informal survey will be made public by year’s end. Please post this survey on your discussion groups and share freely with families living with autism spectrum disorders. Thank you in advance for your assistance.I. Responder Details:Survey Responses Prepared by: ___ Self ___Mother ____ Dad ___ Grandparent ____ Other Caregiver
II. Individual: This individual lives in _____________________ (City, State, Country)
Actual Diagnosis: ______________________________________ Current Age: __________
_____Classical Autism (from Birth) or _____ Acquired Autism (Age of Onset ____)
Other Medical Conditions Diagnosed: __________________________________________________________
Age at Diagnosis: ___________ Gender: ___Male ___Female
Culture/Race: _______________________
Verbal: ___ Yes _____ NO ____ Limited
How Many Siblings ___ brothers ____sisters
If so: Are any of these siblings diagnosed with an autism spectrum disorder? ____ or ADD/ADHD? ____
III. Behavioral Therapies Currently in Use:1. Please list the current behavioral conditions (such as Lovvas or ABA).
2. Provided by _____public school system _____ private school program _____ in the home _____ in a medical or treatment center _____ by parent or family member
3. Payment _________ covered in IEP __________ covered by insurance _____ covered by MEDICAID
_______ paid for out of pocket _____ services donated
4. Explanation if desired:
Behavioral Therapies Previously Used:
5. Please list the previously used behavioral conditions (such as Lovvas or ABA
6. Provided by _____public school system _____ private school program _____ in the home
_____in a medical or treatment center _____ by parent or family member
7. Payment _________ covered in IEP __________ covered by insurance _____ covered by MEDICAID
_______ paid for out of pocket _____ services donated
8. Explanation of why treatment was suspended or changed:
9.What objective measures do you use to measure success of behavioral therapies?
(i.e. additional words in vocabulary, ability to dress, use the toilet, etc.)
IV. Dietary SupplementsDietary supplements (vitamins, herbs, minerals, etc.) are widely used in the autism community. Please provide a list of products current being used and specific condition or behavior you are using the product to address (vision, chelating metals, behavior, specific diagnosis, etc.)
10. In Current Use
Product Dose per day Brand Condition
11. Previously Used:
Product Dose per day Brand Condition Age and Duration
12. If you previously used products that are no longer in use, did you suspend use because the condition __was resolved, ___ because you felt the product didn’t work, ____because of an adverse reaction to the product, or other reason? Please explain:
13. How do you generally decide to use products?
_________Prescribed by a Physician _________ Prescribed by another health care professional _________ Recommended by a friend _________ Heard about it on the internet _________ Heard about it at a Conference ____ Speaker ____ Booth ___ Attendee _______ Read about it in ____ book ____ magazine ____ newspaper ___ catalogue
Other, Explain if desired:
14. Do you want the National Institutes of Health to conduct or fund research evaluating the _____ safety and/or _____ efficacy of dietary supplements in relation to autism spectrum disorders and related conditions? If so, on a scale of 1 to 10, how high a priority is this for you? ___________
15. Do you want the autism and disability philanthropic community (such as ASA, Autism Speaks, etc.) to fund research into the _____ safety and/or _____ efficacy of dietary supplements in relation to autism spectrum disorders and related conditions?
16. Do you have a priority for specific products you would like evaluated? ___ YES _____ NO
If so, which product(s):
17. Current Approximate Monthly Cost for Dietary Supplements: __________
18. Is this more or less than this time last year? __________
V. Complementary and Alternative Medicine (CAM) Therapies 19. Do you now or have you every included CAM therapies in your treatment regimen? ___ YES ____ NO
Please check if the following therapies are being used or have been used and the approximate age of use and whether you had a positive outcome with the treatment. (Feel free to elaborate as to desired outcomes, actual experience with practitioner, and other details as desired.)
20. Approach Age Positive Outcome?
_______ Acupuncture
_______ Biofeedback (or Biofeedback accessory devices)
_______ Chiropractics
_______ Homeopathy
_______ Music Therapy
_______ Massage Therapy
_______ Rolfing or other body based therapies
_______ Hyperbaric
_______ Reiki, Touch Therapy or other Energy Healer
_______ Ayurveda
_______ Sweat Lodge, Sauna, or other sweat inducing protocol
_______ Traditional Oriental Medicine
_______ Traditional Medicine of another culture ______________
_______ Colonics
________ Other, please detail:
21. Do you want the National Institutes of Health and its National Center for Complementary and Alternative Medicine to conduct or fund research evaluating the _____ safety and/or _____ efficacy of CAM theraies in relation to autism spectrum disorders and related conditions?
22. Do you want the autism and disability philanthropic community (such as ASA, Autism Speaks, etc.) to fund research into the _____ safety and/or _____ efficacy of Cam therapies in relation to autism spectrum disorders and related conditions?
23. Do you have a priority for specific therapies you would like evaluated? ___ YES _____ NO If so, which ones:
24. Where you referred by: ____ Physician ____ Other Health Care Professional ___ Family Member ____ Other Autism Parent ___ Conference _____ Online ___Self Referral____ Other Please Explain:____________________________________________________________________________________________
25. Where these treatments paid for by _______ Insurance ________ Medicaid ____ Out of pocket _____ donated __________ Other, Please Explain: __________________________
26. Was the use of a CAM therapy specifically for the diagnosis of autism? _____ YES ____ NO
(Chiropractic for back pain for example would be a non-autism diagnosis) .
27. Approximate Cost for last 12 months for CAM therapy Use: ________
VI. Special Dietary Approaches28. Is the individual currently on a special diet? ______ YES _____ NO
29. Type: ____Gluten Free ______ Casein Free ______ Organic Other: _______________
30. How long on the diet? ________ Are their noticeable improvements in symptoms? ______ YES _____ NO
31. Is this diet the result of a diagnosed food allergy (i.e. celiac disease) ______ YES _____ NO
32. Have you previously tried a different dietary approach? ______ YES _____ NO
31. How long was the previous approached used? _________________
32. What precipitated the change? ______________________________________________________________
VII. Physical Therapy and Exercise33. Are any physical therapy, occupational therapies currently used? ___ YES ___ NO Please describe:
34. Trampoline ___ YES ___ NO
35. Participate in any Team Sports ___ YES ___ NO Please describe (including where offered – i.e. school, club, non-profit like NYFAC or YMCA, etc.):
37. Individual Sports ___ YES ___ NO Please describe:
38. If school age, has the individual involved in any sporting events in school? ___ Yes ___ NO
VIII. Spirituality and Religion (for parents response only) 39. Do you consider yourself a religious person? ______ YES _____ NO _______Spiritual but not Religious
40. After having a child who was born with or developed an autism spectrum disorder, did your church attendance change? _____ YES _________ NO (______ Increased ______ Decreased ____ Ceased)
41. Do you find comfort in prayer? _____ YES ___________ NO
IX. Prescription and Over the Counter Drugs 42. Are Any Drugs Currently Prescribed? ____ Yes ___ No Please List:
43. Approximate annual cost for medical serivces, drugs, and therapies. _________________
a. ____ % insurance b. ____ % MEDICAID c. ____ % out of pocket d. ____ % donated
X. Please check all that apply 44. I believe this individual developed autism as a result of a vaccine injury. ________
45. This individual has been diagnosed with mercury toxicity. ________
a. Other metals as well. ______________ (Please List.______________________________________________)
(Please describe how verified.______________________________________________)
46. This individual is using or has utilized a)___ Chelation Therapy. __________ b. ___ IV Chelation c. ___ Oral Prescription Chelator d. ___ Oral Dietary Supplement Chelator e). ___ Topical Chelator f. ___ Suppository Chelator g. ___ Other (Please explain)
47. This individual has been diagnosed with an inflammatory bowel condition. _____
48. This individual has been diagnosed with post MMR measles infection. _____
(Please describe how verified.______________________________________________)
49. This individual is currently on a Medicaid waiting list? _____
50. The parents of the individual with autism remain married (or together). ________
Please Respond by April 15, 2007 Three Ways to Respond: Email to: info@bethclay.com Fax: 1-202-318-7557 or Mail: 3470 Olney Laytonsville Road #187, Olney, MD 20832 USA
You assistance in this is greatly appreciated. All individual-specific information will remain confidential. Please do not worry if the formatting becomes distored. Feel free to insert additional lines or information. If you wish to receive information as a follow up, please insert an email address here: _______________________________________
I miss Sundays. Waking to the smell of sausage, bacon, & eggs, going to church with my grandparents...the day was ours, as a family, to do as we pleased. If we didn't feel like doing the church thing, we'd sleep as late as we wanted. Sunday was the day for family...large dinners, family parties, dinner with our own little family; as an adult, Sunday was a day for me to have dinner with my mother, relaxing, letting the kids run around, having fun just enjoying the day and spending time together. If we weren't spending the day with extended family, perhaps we were with friends, perhaps we were doing house work, perhaps we were just lounging on the sofa, or playing in the park with our children. We don't spend our Sunday's like that any longer. Sadly, we don't "own" our Sundays anymore.
SmallBoy is in Cub Scouts. We have our big giant pack meetings one Thursday evening a month. This typically conflicts with SmallBoy's OT, but the Scoutmaster is aware of this and is totally fine with us being a tad late. Flexibility. Wonderful! Our individual outings as a den, though, are typically held every other Sunday afternoon at 2 or 3:00. Again with the Sunday. Mind you, SmallBoy loves scouts and our leader is phenomenal, plans amazing activities for our boys (they're learning how to rapell for their next hike), and the boys get a LOT out of each meeting...but SUNDAY? 
