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Autism Coach

2009 Parent Autism Survey


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2009 Parent Autism Survey Results

Causes of Autism and More

Preliminary Data Published November 3, 2011, survey conducted and data compiled by Sue Bennett.

This survey is dedicated to the 120 members of the autism community who responded to this survey:  I want to extend a heartfelt thanks to everyone who took time out busy and challenging days to answer this questionnaire and share your personal stories.  You are the everyday heroes behind the everyday miracles that we witness first-hand in the autism community. 

Purpose of the Survey

The primary objective this survey is to give we, the members of the autism community, an opportunity to share our observations, express our opinions and theories, and be heard – something that rarely occurs in our government, scientific, and medical community.  

The second objective is to provide useful information to help improve diagnosis, treatment and outcome for individuals within the autism spectrum by providing data on what is currently perceived as being helpful, identifying areas that can be improved upon, perhaps providing impetus for further research through our findings.

Abstract

120 family members of individuals within the autism spectrum and individuals within the autism spectrum responded to this questionnaire.  Actual data is provided in the details that follow the abstract.  Here is a summary of our findings.

  • What caused autism? 95% of individuals saw there being multiple causes.  The two causes that were given highest priority and equally sited were Immunizations of the child (55%) and Genetics (55%).   The third ranking cause was environmental toxins (31%).
  • Primary diagnosis:  Autism (53%), PDD-NOS (18%), Asperger’s Syndrome (14%)
  • Most common ages when symptoms first observed:  1-1/2 years (31%), birth-3 months (20%), 1 ½-2 years (12%), 2-2 ½ (9%)
  • Age when first received diagnosis: 3-3 ½ (17%), 1 ½-almost 2 (17%), 2 ½ - almost 3 (15%), 3 ½-4 (16%), 5 (11%)
  • Gap between symptoms observed and diagnosis: 2-2/12 years (20%), 1- 1 ½ years (16%), 1 ½-2 years (12%), 6 months-1 year (10%)
  • Most helpful therapies (in order of priority):  Supplements, ABA, GFCF Diet, Speech Therapy, Prescription Drugs, Occupational Therapy
  • Most helpful supplements (in order of priority):  B Vitamins, Enzymes, Probiotics, Omega/Fish Oils
  • Most helpful prescription drugs (in order of priority):  B-12 injections, Diflucan, Clonidine, DMPS, Nyastatin, Prozac, Risperadal
  • ·       33% of respondents observed their child lose developmental milestones (the main observation cited is that the child was speaking and then lost language) in early childhood (between 6 months and 2 ½ years old).  This information was not solicited explicitly through the survey but independently volunteered by the respondents.  The actual number of children who regressed may be higher.    

Details

Not everyone responded to every question.  I had offered a short version and a long version of the questionnaire.  The vast majority of respondents took the time to fill out the longer questionnaire.  There were 120 respondents to the survey.

Causes of Autism

Respondents listed what they believed to be the primary cause of their child’s autism in order of priority.  Tables 1 indicates the number of causes respondents believe contributed to their child or themselves receiving an autism spectrum diagnosis.

Table 1 – Number of  Believed Causes of Autism by Percentage

 number-of-believed-caused-table.jpg

Other Causes of Autism

Other Causes than those on the survey were submitted and comprised 10% of responses.

Table 2 – Other Causes of Autism Submitted by Respondents

other-causes-of-autism-table.jpg

These “Other” responses are given below in the order of priority they were assigned by respondents:

1st Priority:

  • Exposure to meds – Antibiotics – 1;
  • Parent’s exposure to toxins – mercury fillings - 2
  • Items in diet – Aspartame – 1; Fish – 1; MSG – 1; Various - 1
  • Labor/drugs to induce labor - 2
  • Don’t know – 2
  • All played a part – 1

 2nd Priority:

  • Exposure to meds – Antibiotics – 1;
  • Items in diet  - child’s diet – 2; adult diet – 1;
  • Labor/drugs to induce labor/birth trauma - 2
  • Autoimmune response – 2

3rd Priority:

  • Labor/drugs to induce labor/birth trauma – 1
  • Antibiotics during pregnancy - 1

4th Priority

  • Meds - Ibuprofin and Acetametaphine

5th Priority

  • Hospital complication – Anesthesia regression - 1
  • Immunological reaction – 1
  • Stress during pregnancy – 1

Age First Noticed Symptoms and Diagnosed

I was not actually searching for this information when I sent out the questionnaire, but was struck by the gap between parent’s observations of their child diverging from normal development and diagnosis.  Many respondents shared that their concerns had been ignored or they had been referred to as “overly protective” when voicing their concerns to health care professionals, not infrequently shortly after an immunization.  83% of diagnoses occurred a year or more after symptoms were first observed.

Table 3 – Months Between Observation of Symptoms and Diagnosis

age-first-diagnosed.jpg

Table 4 – Months Between Observation of Symptoms and Diagnosis

 months-between-symptoms-and-diagnosis.jpg

 

 Autism Spectrum Diagnoses

Table 4 shows the breakdown of autism spectrum diagnoses submitted by respondents. Table 10 shows the breakdown of secondary diagnoses respondeants.

Table 4 – Secondary Diagnosis of Respondents (by numbers of responses)

Non-ASD Secondary Diagnosis

 

ADHD (Attention Deficit /Hyperactivity Disorder

11

Apraxia

6

OCD (Obsessive/Compulsive Disorder)

5

ADD (Attention Deficit Disorder)

3

Anxiety

3

Seizure Disorder

3

Auditory Processing Disorder

2

Celiac

2

Dyspraxia

2

Early Intervention

2

Language Disorder

2

Mental Retardation

2

PANDAS

2

Tourette’s Syndrome

2

Attachment Disorder

1

Bipolar

1

Bird Phobia

1

CAPD (Central Auditory Processing Disorder)

1

Depresssion

1

Diabetes

1

Dyslexia

1

ECT

1

Food Allergies

1

GH Deficient

1

Hypoglycemia

1

Kabuki Syndrome

1

LNH

1

Malabsorption

1

Non-Verbal Learning Disorder

1

PICA (putting non-food items in mouth)

1

Sensory Integration

1

Static encephalopathy

1

                                  Tics

1

Lyme Disease

1

 

Therapies used by Respondents

Table 11 shows therapies used by respondents  in order of which is most helpful.

Table 5 - Therapies Used in Treatment of Autism Ranked by Helpfulness 


 Therapies

Helpful

Didn’t Help

Harmful

If Harmful, How

Supplements (in general)

47

3

 

2

(see specific supplements for more reports)

Too many in protocol - 1

ABA

34

1

 

 

GFCF Diet

20

7

 

 

Speech Therapy

20

4

2

Wrong therapist - 2

Prescription Drugs (in general)

19

 

2

(see specific drugs for more reports)

Occupational Therapy

16

2

 

 

Chelation

12

2

1

 

HBOT (Hyperbaric Oxygen Chamber Therapy)

9

 

 

 

Early Intervention (not specific)

6

 

 

 

DAN Doctor

5

 

 

 

Social Skills Groups

5

1

 

 

Horseback Riding/Therapy

4

 

 

 

Physical Therapy

4

 

 

 

Sensory Integration

4

1

 

 

Auditory Integration

3

1

 

 

Dog/Pets

3

 

 

 

Early Intervention

3

 

 

 

GFCF Diet + additional restrictions

3

1

 

 

Neuropsychology/neuroscience therapy

3

 

 

 

Tomatis Listening Program

3

 

 

 

Exercise

2

 

1

Sensory issues - 1

Floor Time Play Therapy

2

1

 

 

Food Allergy Diet

2

 

 

 

Gluten Only Free Diet

2

 

1

Made different from peers - 1

Homeopathy

2

 

 

 

Misc Special Diet

2

 

 

 

Music

2

 

 

 

Natural Diet (no artificial ingredients)

2

 

 

 

Neurofeedback

2

1

 

 

Piano Lessons

2

 

 

 

RDI

2

 

 

 

Sibling Interactions

2

 

 

 

TEACCH

2

1

 

 

Visual Integration

2

 

1

Lasting negative effects from implementation in school - 1

Anxiety Therapy

1

 

 

 

Budwig Diet

1

 

 

 

Casein Free Diet

1

 

 

 

Chiropractic

1

1

 

 

CompuThera Software

1

 

 

 

Cranial Sacral Therapy

1

1

 

 

Dance

1

 

 

 

Direct Instruction Reading Therapy

1

 

 

 

Dry-Heat Sauna

1

 

 

 

Epsom Salt Baths

1

 

 

 

Fast Forward Computer Software

1

 

 

 

Feeding Therapy

1

 

 

 

Gymnastics

1

 

 

 

Herbal baths

1

 

 

 

Individual Psychological Counseling

1

 

1

 

Irlen lenses

1

 

 

 

Karate

1

 

 

 

Learning Rx

1

1

 

 

Lindamood Bell

1

 

 

 

Meditation

1

 

 

 

Natural Environonment Teaching

1

 

 

 

NGNC Diet

1

 

 

 

No Cheese

1

 

 

 

One-on-one therapies

1

 

 

 

Osteopathy

1

 

 

 

Playdates

1

 

 

 

PRT

1

 

 

 

Qigong Healing

1

 

 

 

Raw Food Diet

1

 

 

 

Reducing distractions

1

 

 

 

                                            Sequential Homeopathy

1

 

 

 

Skinner Clinic at Holyoke Hospital

1

 

 

 

Son-Rise

1

 

 

 

Special Education in School

1

 

 

 

Specific Carbohydrate Diet

1

 

 

 

ST

1

 

 

 

Wii Sports and Fit w Balance Board

1

 

 

 

Yoga

1

 

 

 

Brushing

 

1

 

 

Swimming

 

 

1

Sensory issues - 1

Table 6 provides a table of specific supplements in order of benefit.

Table 6 – Specific Supplements in Order of Benefit
 

Supplements

Helpful

Didn’t Help

Harmful

If Harmful, How

Probiotics

7

 

 

 

B Complex

6

2

 

 

B-12

6

 

 

 

Multivitamin

6

 

 

 

Digestive Enzymes (did not specify which one)

4

 

1

Burned mouth and gave him diarrhea - 1

Melatonin

4

 

 

 

Autism Enzymes

3

 

 

 

B-6

3

1

 

 

Candex

3

 

 

 

Cod Liver Oil

3

 

 

 

Magnesium

3

1

 

 

Vitamin  C

3

 

1

Harmful if excessive -1

Vitamin D

3

 

 

 

B6

2

 

 

 

Behavior Balance

2

 

 

 

Carnosine

2

 

 

 

Folinic Acid

2

 

 

 

Omega 3-6-9

2

 

 

 

Vitamin D3

2

 

 

 

5HTP(hydroxyl-tryophan)

1

 

1

 

Amino Acids

1

 

 

 

DMG

1

 

2

More hyper - 1

Fish Oil

1

 

 

 

Folic acid

1

 

 

 

GABA

1

 

1

 

Methyl Folate

1

 

 

 

N-Acetyl-Cysteine

1

 

 

 

Natural Anti-Fungals

1

 

 

 

Neocate Splash

1

 

 

 

No-Fenol

1

 

 

 

Omega 3 Oil

1

 

 

 

Pantothenic Acid

1

 

 

 

S. Boulardii

1

 

 

 

SAMe

1

 

 

 

Singulair

1

 

 

 

SuperNu Thera

1

1

 

 

Threelac

1

 

 

 

TMG

1

 

2

More hyper - 1

Udo’s Oil

1

 

 

 

Liquid Carnosine Plus

1

 

 

 

N-Acetyl-Cysteine

1

 

 

 

Glycine

1

 

 

 

Calcium

1

1

 

 

Selenium

1

 

 

 

Zinc

1

 

1

Can’t handle zinc supplementation - 1

Chlorella

1

 

 

 

Herbal Detoxifiers

1

 

 

 

Liver Life

1

 

 

 

Spirulina

1

 

 

 

Valerian

1

 

 

 

Immune System Enhancing Supplements

1

 

 

 

High Dose Vitamins

 

1

 

Do better with smaller amount - 1

Probiotics with Strep Thermopolis

 

 

1

 

 

 

 

 

 

Flaxseed

 

 

1

 

Acetyl-L-Carnitine

 

2

 

 

Taurine

 

2

 

 

 

Summary

Respondents perceive there being multiple factors contributing to a child receiving an autism spectrum diagnosis frequently describing it as a combination of genetic predisposition, immunization, environmental pollution and other factors.  About half of respondents found supplements helpful about 1/3 found prescription drugs helpful.

The therapies that were most helpful are listed in Table 15.  Please note that not everyone responded to this question but it was calculated based upon the entire population of 120 respondents - so no doubt the percentages would be higher if it was based only upon those who did answer the question.

A large number of parents observed their children's milestones reverse during early childhood (33% of respondents), often immediately, shortly or gradually after one or more immunizations.  If the desire was there on the part of the CDC to gather the data from parents of children in the autism spectrum concerning the impact of immunizations and their observations, it would easily be found as based upon both my 2004 and 2009 surveys of parents.  Our government needs to reevaluate and retract the official hasty denial of autism vaccine connection based upon studies by a scientist who was convicted of defrauding the CDC this past spring.  It's time to move towards acknowledging the damage that has been done to a generation of children, provide assistance to individuals within the autism spectrum to help them reach their fullest potential, implement policies to clean up the environment and food supply, and re-evaluate what is necessary and safe in terms of vaccinations to put an end to this epidemic.  

There is already an epidemiological study indicating that newborns in the United States immunized with Hepatits B between 1997 and 2002 were three times more likely to develop an autism spectrum disorder - we have all the concrete evidence we need concerning an autism-vaccine connection.  My son was one of the unfortunate children immunized with Hepatitis B at birth to prevent a sexually transmitted disease he had no risk of contracting.

Table 7 – Most Highly Ranked Therapies

most-high-ranked-therapies-table.jpg

Other areas that would benefit from investigation would be research into shortening the length of time between symptoms being detected and diagnosis.  There is existing data compiled by the Defeat Autism Now organization indicating that the earlier children are diagnosed and therapies are initiated, the significantly greater the chances of seeing significant improvement and even recovery.  The advice respondents to the survey most wanted to share with parents whose children had just received a diagnosis on the autism spectrum  was to not delay, do research and start putting therapies into place as soon as possible.