Skip to main content
. 2019 Mar 6;29(2):107–123. doi: 10.1089/cap.2018.0121

Table 2.

Participant Medical Histories

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.