Parent Ratings of Behavorial Effects of Biomedical Interventions for Asperger Syndrome

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Parent Ratings Questionaire
Other Forms & Surveys ARI Publ. 34/February 2008

Note: The data below are based on cases identified as "Asperger Syndrome" N=1,297

Parent Ratings of Behavorial Effects of Biomedical Interventions for Asperger Syndrome
Autism Research Institute
4182 Adams Avenue
San Diego, CA 92116 USA

The parents of autistic children represent a vast and important reservoir of information on the benefits-and adverse effects- of the large variety of drugs and other interventions that have been tried with their children. Since 1967 the Autism Research Institute has been collecting parent ratings of the usefulness of the many interventions tried on their autistic children.

The following data have been collected from 1,297 parents who have completed our questionnaires designed to collect such information. For the purposes of the present table, the parents responses on a six-point scale have been combined into three categories: “made worse” (ratings 1 and 2), “no effect” (ratings 3 and 4), and “made better” (ratings 5 and 6). The “Better:Worse” column gives the number of children who “Got Better” for each one who “Got Worse.”

There are three sections: Drugs, Biomedical/Non-Drug/Supplements, and Special Diets. Download a one-page Adobe (.pdf) file containing all three sections.

Drugs
Biomedical/Non-Drug/Supplements

Special Diets
Drugs
Note: For seizure drugs: The first line shows the drug’s behavioral effects; the second line shows
the drug's effects on seizures.

Possible Adverse Effects of Prescription Drugs


Got Worse; no effect; got better; better:worse; number of cases

Aderall 39% 26% 34% 0.9:1 186
Amphetamine 31% 28% 41% 1.3:1 113
Anafranil 19% 42% 39% 2.1:1 69
Antibiotics 35% 45% 20% 0.6:1 97
AntifungalsC: Diflucan 7% 38% 55% 7.8:1 56
AntifungalsC: Nystatin 8% 38% 54% 6.8:1 76
Atarax 35% 35% 30% 0.9:1 40
Benadryl 28% 51% 21% 0.8:1 184
Beta Blocker 10% 57% 33% 3.3:1 30
Buspar 19% 54% 27% 1.4:1 59
Chloral Hydrate 30% 57% 13% 0.4:1 23
Clonidine 22% 38% 40% 1.8:1 198
Clozapine 31% 50% 19% 0.6:1 26
Cogentin 25% 58% 17% 0.7:1 12
Cylert 32% 54% 14% 0.4:1 69
Deanol 0% 75% 25% 4
DepakeneD: Behavior: 26% 39% 36% 1.4:1 70
DepakeneD: Seizures 8% 60% 32% 4.0:1 25
Desipramine 25% 50% 25% 1.0:1 12
DilantinD: Behavior 22% 72% 6% 0.2:1 18
DilantinD: Seizures 20% 40% 40% 2.0:1 10
Felbatol 0% 100% 0% 4
Fenfluramine 11% 78% 11% 1.1:1 9
Haldol 35% 41% 24% 0.7:1 37
IVIG 14% 43% 43% 3.0:1 7
KlonapinD: Behavior 11% 68% 21% 2.0:1 19
KlonapinD: Seizures 0% 83% 17% 6
Lithium 18% 43% 39% 2.1:1 49
Luvox 26% 46% 28% 1.1:1 46
Mellaril 31% 33% 36% 1.2:1 36
MysolineD: Behavior 25% 75% 0% 4
MysolineD: Seizures 0% 100% 0% 3
Naltrexone 11% 33% 56% 5.0:1 18
Paxil 43% 25% 33% 0.8:1 89
Phenergan 30% 45% 24% 0.8:1 33
PhenobarbitalD: Behavior 40% 50% 10% 0.2:1 20
PhenobarbitalD: Seizures 20% 27% 53% 2.7:1 15
Prolixin 0% 78% 22% 9
Prozac 29% 32% 38% 1.3:1 177
Risperidal 22% 25% 53% 2.4:1 167
Ritalin 36% 30% 35% 1.0:1 400
Secretin: Intravenous 6% 50% 44% 8.0:1 18
Secretin: Transdermal 0% 50% 50% 8
Stelazine 27% 73% 0% 11
Steroids 41% 35% 24% 0.6:1 17
TegretolD: Behavior 31% 49% 20% 0.6:1 65
TegretolD: Seizures 26% 32% 42% 1.6:1 31
Thorazine 57% 33% 10% 0.2:1 21
Tofranil 25% 40% 36% 1.4:1 73
Valium 38% 43% 20% 0.5:1 40
Valtrex 0% 50% 50% 2
ZarontinD: Behavior 38% 63% 0% 8
ZarontinD: Seizures 0% 100% 0% 5
Zoloft 28% 28% 43% 1.5:1 99

Biomedical/Non-Drug/Supplements

Got Worse; no effect; got better; better:worse; number of cases

CalciumE: 3% 61% 36% 14:1 191
Cod Liver Oil 5% 42% 53% 11:1 160
Cod Liver Oil with Bethanecol 0% 67% 33% 15
Colostrum 5% 56% 40% 8.5:1 43
Detox. (Chelation)C: 7% 18% 75% 11:1 72
Digestive Enzymes 2% 36% 61% 25:1 161
DMG 11% 49% 40% 3.5:1 230
Fatty Acids 2% 33% 65% 29:1 133
5 HTP 5% 54% 41% 8.0:1 39
Folic Acid 8% 44% 48% 6.3:1 131
Food Allergy Treatment 3% 34% 63% 23:1 109
Hyperbaric Oxygen Therapy 9% 36% 55% 6.0:1 11
Magnesium 11% 74% 16% 1.5:1 19
Melatonin 6% 20% 75% 13:1 107
Methyl B12 (nasal) 20% 60% 20% 1.0:1 5
Methyl B12 (subcutaneous) 13% 25% 63% 1.5:1 8
MT Promoter 30% 30% 40% 1.3:1 10
P5P (Vit. B6) 12% 27% 62% 5.3:1 52
Pepcid 0% 56% 44% 18
SAMe 17% 67% 17% 1.0:1 12
St. Johns Wort 15% 73% 12% 0.8:1 26
TMG 21% 41% 38% 1.8:1 58
Transfer Factor 7% 71% 21% 3.0:1 14
Vitamin A 6% 62% 32% 5.0:1 111
Vitamin B3 6% 43% 51% 8.2:1 81
Vitamin B6 with Magnesium 5% 45% 50% 11:1 321
Vitamin B12 (oral) 0% 38% 63% 8
Vitamin C 2% 51% 46% 19:1 201
Zinc 4% 38% 58% 16:1 163

Special Diets

Got Worse; no effect; got better; better:worse; number of cases

Candida Diet 1% 41% 58% 41:1 71
Feingold Diet 0% 45% 55% 96
Gluten- /Casein-Free Diet 3% 27% 70% 24:1 237
Removed Chocolate 1% 50% 49% 36:1 149
Removed Eggs 3% 61% 36% 11:1 125
Removed Milk Products/Dairy 2% 43% 56% 31:1 336
Removed Sugar 3% 48% 49% 14:1 207
Removed Wheat 1% 41% 58% 44:1 226
Rotation Diet 3% 37% 60% 20:1 65
Specific Carbohydrate Diet 3% 33% 64% 21:1 33

A. “Worse” refers only to worse behavior. Drugs, but not nutrients, typically also cause physical problems if used long-term.
B. No. of cases is cumulative over several decades, so does not reflect current usage levels (e.g., Haldol is now seldom used).
C. Antifungal drugs and chelation are used selectively, where evidence indicates they are needed.
D. Seizure drugs: top line behavior effects, bottom line effects on seizures.
E. Calcium effects are not due to dairy-free diet; statistics are similar for milk drinkers and non-milk drinkers.

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Good to know the things I'm giving him seem to have a good track record for helping. But then, that's why I started giving them to him in the first place I suppose. If I haven't already mentioned it, this is what I give Richard:

Children's multi-vitamin (gummy bear form, he won't take it any other way)

6-8 oz. V8 Fusion Juice (for the vegetables since he won't eat any) with 1 oz. Fruit and Vegetable Drinkables (http://www.samsclub.com/shopping/navigate.do?dest=5&item=379266) and 2 tsp. Vitamin B mix and Iron mix (http://wholesalesupplementstore.com/flora-floradix.html)

He also gets a digestive enzyme with probiotics at least once a day, they are in capsule form so I just dump them in his drink and mix it up. I can't find that online... but I could show it to you.

When he's up for taking it, he gets fish oil (http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=YE-1016). We definitely notice a difference in his attitude when he takes the stuff... But he goes through phases when he wants to take it.

Finally, as I've said before, we give him melatonin... anywhere from 1.5-3 mg every night to help him get to sleep. Again, we get it in capsule form and dump it in his drink and shake it up really good.

I guess the only other thing he sometimes gets per his pediatrician's suggestion is a half cap of Miralax in a drink once or twice a day because he tends to be constipated and/or holds in his poo.

Not to mention his gluten free diet, I suppose. That was another major change.


All of these things are things I've researched at one point or another and have found that they help autistic children, and they do seem to help Richard both academically, behaviorally and socially. We were having major, major issues before we implemented a lot of these things.

Yeah, its amazing what these "suppliments" do. We do flaxseed 500mg. **same thing as the fish, for the omega 3's, but flax is supposed to help with GI issues** then the last 2 nights we've been doing the meletonin. She's SLEEPING, and it's awesome. Then the HBOT.. hopefully she'll be able to go back in soon, since she's regressing like crazy!!!. Occupational therapy.. what else.. probiotics **infant flora probiotics** in the cold section at natures food patch. Yummy Greens, which is vegis in gummy form. We have to stop those though since she it is now confirmed she is allergic to geletin. So no more gummies. She is milk free, since she's allergic. Once she gains her weight back, I may try going gluten free. I need to try the milk free/gluten free for myself to see if it helps!! I was thinking about the enzymes. Is it called "kidzymes"??? they have that a natures food patch.

Oh, well I didn't mention the Speech and Occupational therapy he gets 3 times a week each at school.... so yeah, add that to the list as well. Whew....

Anyway, as far as the enzymes go, I don't get ones specifically made for kids, but usually it will say right on the label if it's OK for kids or not. 99% of the time, it's OK for both kids and adults. I get mine from the Vitamin Shoppe.

I thought about doing gluten free for myself once or twice... in the end, I never committed. I might still be interested in doing it though. We tried doing the milk (casein) free with Richard and he couldn't make the switch, and since he seemed to do fine with just the gluten switch, we let him keep the milk.