Table 2.
Survey completed by (n = 886) | |
Primary caregiver of an individual with autism | 87% |
Adults with autism and their mother/father/childhood guardian | 3% |
Adult with high-functioning autism >18 years old who doesn't have a guardianship | 5% |
Grandparent of an individual with autism | 4% |
Location (by region) | |
Midwest | 20% |
Northeast | 22% |
South | 31% |
West | 27% |
Age of participants (years) | |
Child (<13) | 54% |
Teenager (13–18) | 21% |
Young adult (19–30) | 17% |
Adult (>30) | 8% |
Gender of participants | |
Male | 77% |
Female | 23% |
Current medical diagnosis | |
Autism spectrum disorder (this is less severe than a diagnosis of autism) | 21% |
Asperger's syndrome | 16% |
Autism | 42% |
High-functioning autism | 12% |
No current diagnosis, but he/she was on the autism spectrum previously | 2% |
Pervasive developmental disorder-not otherwise specified (PDD-NOS) | 7% |
Developmental history | |
Normal development, followed by a plateau in development that lasted for several months or longer | 22% |
Normal development, followed by a major regression and a plateau lasting several months or longer | 13% |
Normal development, followed by major regression | 21% |
Abnormal development from early infancy, with no major regression or plateau in development | 34% |
Other | 10% |
Regression information | |
Age of regression (in months) | |
Average | 19 |
First quartile | 12 |
Third quartile | 24 |
Skills primarily affected by regression | |
Language | 84% |
Social interactions | 82% |
Behavior | 81% |
Motor skills | 46% |
Perceived cause of regression (more than one response was allowed) | |
High fever | 11% |
Illness | 8% |
Seizure | 6% |
Vaccination | 51% |
Unknown | 45% |
Other | 15% |
Number of regressions (if they had a regression) | |
1 | 48% |
2 | 18% |
3 | 11% |
4–5 | 6% |
≥6 | 6% |
Perceived triggers for the regressions (if they said they had more than one regression) | |
High fever | 5% |
Illness | 8% |
Seizure | 6% |
Vaccination | 35% |
Unknown | 35% |
Other | 8% |
Genetic conditions | |
No genetic testing done | 60.0% |
Genetic testing normal | 29.4% |
Angelman's syndrome | 0.2% |
Down's syndrome | 0.5% |
Fragile X | 1.5% |
PTEN | 0.1% |
Prader-Willi syndrome | 0.0% |
Rett's syndrome | 0.0% |
Smith-Lemli-Opits syndrome | 0.0% |
Tuberous sclerosis | 0.0% |
Other microarray abnormality | 1.8% |
Other genetic disorder | 6.5% |
Metabolic disorders | |
No metabolic abnormalities | 47.1% |
No metabolic testing done | 44.8% |
Mitochondrial disease (due to genetic abnormality) | 1.3% |
Mitochondrial dysfunction (not due to known genetic cause) | 2.7% |
Cerebral folate deficiency | 1.7% |
Carnitine abnormalities | 1.4% |
Urea cycle defect | 0.2% |
Purine metabolic defect | 0.4% |
Sulfation defect | 0.8% |
MTHFR abnormality | 5.2% |
Other | 4.4% |
Rounds of antibiotic usage within first 3 years (10 days = 1 round) | |
Average | 7.2 |
Median | 3.0 |
0 Rounds | 14% |
1 Round | 18% |
2 Rounds | 12% |
3 Rounds | 16% |
4 Rounds | 6% |
5 Rounds | 6% |
6–7 Rounds | 9% |
8–10 Rounds | 8% |
11–15 Rounds | 3% |
16–20 Rounds | 3% |
21+ Rounds | 7% |
Severity of autism-related symptoms at age 3 | |
No autistic symptoms | 4% |
Nearly normal, with only very mild symptoms | 18% |
Mild autism | 24% |
Moderate autism | 37% |
Severe autism | 17% |
Severity of autism-related symptoms currently | |
No autistic symptoms | 1% |
Nearly normal, with only very mild symptoms | 16% |
Mild autism | 30% |
Moderate autism | 39% |
Severe autism | 14% |
PTEN, phosphatase and tensin homolg; MTHFR, methylenetetrahydrofolate reductase.