Re: PARENT RATINGS OF BEHAVIORAL EFFECTS OF BIOMEDICAL INTERVENTIONS

[Guest guest]

The thing I notice about this is that nearly all the drugs had *no effect*

on around half of the sample, and very often there are more in the 'no

effect' category than the 'got better' category. Which leads me to conclude

that you will be very lucky to find a drug which has any effect on your

child, let alone a positive one.

in England

[Guest guest]

,

I must ask you.. Ive read some literature that says they dont treat autism with medications in your area, is this correct? What are primary means of treating children with various degrees of autism where you are?

TK

Re: PARENT RATINGS OF BEHAVIORAL EFFECTS OF BIOMEDICAL INTERVENTIONS

The thing I notice about this is that nearly all the drugs had *no effect*on around half of the sample, and very often there are more in the 'noeffect' category than the 'got better' category. Which leads me to concludethat you will be very lucky to find a drug which has any effect on yourchild, let alone a positive one. in England

[Guest guest]

I just knew Louie couldn't be the only one getting sterling results from

Risperdal! Nice to see it in print, though.

Annie, who loves ya annie@...

--

“Ever since I can remember, I’ve had memories.”--Colin Mochre

[Guest guest]

Why exactly are things highlighted in blue and red? Furthermore I see interventions listed that have a higher sucess rate than 40% that you did not hightlight. Could you please explain in further detail the reasons behind highlighting some interventions and not others?

Futhermore a parent who is seeking treatment and happens to come upon this document should realize that ARI created and helped develop DAN, which concentrates on non-psychotropic drugs as the best or only means of treating autistic patients.

I also remember filling this questionaire out, only after looking for information about a special diet for my son. Im wondering if this is really scientifically sound? Although one could say this was a random sample, it really wasnt. Since their site is geared towards non-drug interventions wouldnt more parents that beleive in a non-drug approach fill this out??

Two of the things highlighted in blue, are only done with patients that have yeast-related autism. Not every autistic child, that is noted down at the bottom. Thus, it doesnt mean every child that tries this would benefit.

It also says that the number of cases are cumulative over several decades, and doesnt reflect current usage levels. SO some of the things listed may be from 20 years ago..how is a parent to know what is current and what is not. Plus there are some interventions that have thousands of responses and others that have very little. That isnt a scientifically sound report. There is more to providing information like this than just doing some very simple statistics.

Anyway, im not knocking the information contained in the report, nor am i saying its not useful (as I think it can be). I guess im trying to point out that parents should be careful when looking at any source of information and whats contained within it before making decisions regarding the treatments they choose for their children.

TK

PARENT RATINGS OF BEHAVIORAL EFFECTS OF BIOMEDICAL INTERVENTIONS

Roxanne Przybysz Founding Director Autism Canada Foundation http://www.autismcanada.org/home.htm

PARENT RATINGS OF BEHAVIORAL EFFECTSOF BIOMEDICAL INTERVENTIONS

Autism Research Institute * 4182 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 the more than 21,500 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. Click here to download a one-page Adobe (.pdf) file containing all three sections.

Jump to:

BIOMEDICAL/NON-DRUG/SUPPLEMENTS

SPECIAL DIETS

DRUGS

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

GotWorseA NoEffect GotBetter Better:Worse No. ofCasesB

Aderall 39% 28% 34% 0.9:1 285

Amphetamine 47% 28% 25% 0.5:1 1174

Anafranil 31% 37% 31% 1.0:1 351

Antibiotics 30% 59% 11% 0.4:1 1617

AntifungalsC: Diflucan

7%

42%

51%

7.2:1

185

AntifungalsC: Nystatin

5%

48%

47%

10:1

727

Atarax 26% 53% 21% 0.8:1 443

Benadryl 24% 51% 25% 1.1:1 2512

Beta Blocker 18% 49% 33% 1.8:1 236

Buspar 26% 45% 30% 1.2:1 281

Chloral Hydrate 41% 37% 22% 0.5:1 375

Clonidine 21% 31% 48% 2.2:1 1090

Clozapine 44% 39% 16% 0.4:1 79

Cogentin 19% 53% 28% 1.4:1 149

Cylert 45% 35% 21% 0.5:1 580

Deanol 15% 55% 29% 1.9:1 195

Depakene: Behavior 25% 43% 32% 1.3:1 871

Depakene: Seizures 12% 30% 57% 4.6:1 569

Desipramine 38% 25% 38% 1.0:1 61

Dilantin: Behavior 28% 48% 24% 0.9:1 1049

Dilantin: Seizures 14% 36% 51% 3.8:1 377

Felbatol 26% 45% 29% 1.1:1 38

Fenfluramine 21% 51% 28% 1.4:1 453

Halcion 37% 30% 33% 0.9:1 43

Haldol 37% 27% 35% 0.9:1 1119

IVIG 13% 45% 42% 3.2:1 31

Klonapin: Behavior 28% 33% 38% 1.4:1 156

Klonapin: Seizures 38% 50% 12% 0.3:1 26

Lithium 27% 42% 31% 1.1:1 384

Luvox 28% 36% 37% 1.3:1 120

Mellaril 28% 38% 33% 1.2:1 2023

Mysoline: Behavior 44% 40% 15% 0.3:1 131

Mysoline: Seizures 19% 58% 23% 1.2:1 57

Naltrexone 22% 46% 32% 1.5:1 200

Paxil 27% 28% 45% 1.7:1 192

Phenergan 30% 44% 26% 0.9:1 244

Phenobarbitol: Behavior 47% 37% 16% 0.3:1 1052

Phenobarbitol: Seizures 17% 43% 40% 2.4:1 458

Prolixin 34% 34% 33% 1.0:1 83

Prozac 31% 33% 36% 1.2:1 975

Risperidal 19% 28% 53% 2.8:1 401

Ritalin 44% 26% 29% 0.7:1 3540

Secretin: Intravenous

8%

43%

49%

6.2:1

217

Secretin: Transdermal 12% 47% 41% 3.6:1 78

Stelazine 28% 44% 27% 1.0:1 415

Tegretol: Behavior 24% 45% 31% 1.3:1 1345

Tegretol: Seizures 12% 33% 55% 4.5:1 721

Thorazine 36% 40% 24% 0.7:1 897

Tofranil 30% 37% 33% 1.1:1 698

Valium 36% 41% 23% 0.7:1 788

Zarontin: Behavior 34% 43% 22% 0.7:1 129

Zarontin: Seizures 21% 51% 29% 1.4:1 87

Zoloft 33% 31% 36% 1.1:1 212

BIOMEDICAL/NON-DRUG/SUPPLEMENTS

GotWorseA NoEffect GotBetter Better:Worse No. ofCasesB

Vitamin A

2%

59%

39%

22:1

334

CalciumD 2% 62% 35% 14:1 988

Cod Liver Oil 3% 51% 46% 14:1 411

Colostrum 6% 58% 37% 6.7:1 163

Detox. (Chelation)

3%

28%

70%

27:1

116

Digestive Enzymes 4% 44% 52% 14:1 314

Di-methyl-glycine (DMG) 7% 51% 42% 5.9:1 4547

Fatty Acids 4% 44% 51% 12:1 299

5 HTP 11% 55% 35% 3.3:1 66

Folic Acid 4% 55% 41% 11:1 1100

Food Allergy Treatment 4% 37% 59% 14:1 290

Magnesium 6% 65% 29% 5.2:1 288

MelatoninE 10% 33% 57% 5.9:1 302

Pepcid 9% 61% 30% 3.2:1 64

SAMe 25% 46% 29% 1.1:1 28

St. s Wort 11% 67% 22% 2.0:1 46

Tri-methyl-glycine (TMG) 14% 42% 44% 3.1:1 182

Transfer Factor 18% 51% 31% 1.7:1 39

Vitamin B3 5% 55% 41% 9.0:1 487

Vitamin B6 alone 7% 64% 29% 4.1:1 590

Vitamin B6 & Magnesium 4% 49% 46% 11.1:1 5079

Vitamin C 2% 59% 39% 16:1 1306

Zinc 3% 55% 43% 17:1 835

SPECIAL DIETS

GotWorseA NoEffect GotBetter Better:Worse No. ofCasesB

Candida Diet 3% 45% 52% 18:1 605

Feingold Diet

2%

47%

51%

23:1

645

Gluten- /Casein-Free Diet

4%

33%

64%

18:1

724

Removed Chocolate

1%

50%

49%

36:1

1491

Removed Eggs

2%

61%

37%

21:1

882

Removed MilkProducts/Dairy

2%

51%

48%

30:1

4950

Removed Sugar

2%

51%

47%

24:1

3392

Removed Wheat

2%

53%

46%

26:1

2701

Rotation Diet

2%

50%

47%

20:1

678

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 are used only if autism is thought to be yeast-related.D. Calcium effects are not due to dairy-free diet; statistics are similar for milk drinkers and non-milk drinkers.E. Caution: While melatonin can benefit sleep and behavior, its long-term effects on puberty are unknown.

[Guest guest]

-Annie, It is wonderful to hear about the change in your condition!

Praise the Lord and pass the Risperdal!

Dana ('s mom)

-- In autism-aspergers , annie <annie@r...> wrote:

> I just knew Louie couldn't be the only one getting sterling

results from

> Risperdal! Nice to see it in print, though.

>

> Annie, who loves ya

annie@r...

> --

> " Ever since I can remember, I've had memories. " --Colin Mochre

[Guest guest]

>>,

I must ask you.. Ive read some literature that says they dont treat autism

with medications in your area, is this correct? What are primary means of

treating children with various degrees of autism where you are?

TK<<

Hi TK,

Here in England autism per se is not treated with medication. The methods

used are behavioural, ideally based on understanding why a child has

resorted to a particular means of behaviour as a form of communication. Also

helping the child to learn to communicate (although it is very hard to get

useful amounts of speech and language therapy).

Associated disorders such as epilepsy, and ADHD (which is often the first dx

given) are medicated. I have very occasionally heard of children being

given medication for controlling rages, but it is usually considered a short

term measure.

I think that over here autism is considered an educational problem rather

than a medical one. Both are delivered by the state, of course. Even those

who have private medical insurance (as we do) find that they will not pay

out for chronic conditions. So we got the initial dx done privately, to

speed things up, but that was all we could claim for. There are private

schools which you can choose to pay for, but those which are mainstream tend

not to like having special needs kids, and most children in the specialised

ASD schools have a Statement of Special Educational Needs and their fees are

paid by the state.

In the 5 years since my son was dx'd as having AS he has never taken any

medication, nor has he needed to, and I would be very cross if anyone

suggested it. I would prefer that he learns how to control his emotions (if

they threaten to overwhelm him) when in contact with non-family and how to

release them safely when with family. Maybe we have been lucky, because for

most of his life he has reacted to things by screaming rather than being

aggressive.

in England