Age of diagnosis
As noted above, the reported mean age of diagnosis was 58 months (4 years, 10 months; SD = 37.39). The modal age of diagnosis was 36 months (3 years old) and the median was 45 months (3 years, 9 months). This suggests that most of the children were initially diagnosed in the pre-school years, as hypothesized, and 50% were older than 3 years, 9 months at the time of their initial diagnosis. To further evaluate what factors might be involved in an earlier age of diagnosis, a multiple regression analysis was conducted to examine the effect of demographic variables (including race, income, education level of parent, rural/mixed/urban region, and child's gender) as well as current diagnosis (i.e., Autism, Asperger's Disorder, PDD-NOS) and provider type on the age of diagnosis in months. Current diagnosis was assumed to reflect the level of the child's symptomatology along the ASD spectrum. Provider type (i.e., psychiatrist/primary care physician, neurologist, psychologist, or developmental pediatrician) was assumed to reflect the level of specialized early childhood/ASD training on the part of the diagnosing professional. See Table for a presentation of the multiple regression findings. The overall regression model, with all variables entered simultaneously, was significant, R2 = .133, F(7, 110) = 2.402, p = .025. The results indicated no significant demographic effects; however, the provider type and diagnosis were significant. Specifically, developmental pediatricians were associated with earlier ages of diagnosis,Standardized Beta = -.249, partial t = -2.73, p = .007. A oneway Analysis of Variance (ANOVA) confirmed this analysis, F(3,133) = 4.97, p = .003, with developmental pediatricians (M = 47.59 months, SD = 28.85) diagnosing about one year younger than psychologists (M = 59.52 months, SD = 35.29) and neurologists (M = 60.46 months, SD = 32.50), and about 2.5 years younger than other physicians (M = 79.65 months, SD = 51.65). In addition, children with current Autism were reportedly diagnosed at earlier ages than those with Asperger's or PDD-NOS diagnoses, Standardized Beta = -.219, partial t = -2.43, p = .017. Again, this was confirmed by a oneway ANOVA, F(2,138) = 13.94, p = .000, with Autism (M = 47.51 months, SD = 32.56) diagnosed earlier than Asperger's Disorder (M = 85.03 months, SD = 29.52) or PDD-NOS (M = 57.26 months, SD = 43.64).
Multiple regression predicting age of diagnosis in months
Information provided by diagnosing professional
See Table for findings on the diagnosing professional and subsequent information provided to or obtained by parents. As can be seen, in total, the majority of professionals reported to diagnose the children were physicians, including developmental pediatricians, neurologists, primary care physicians, and psychiatrists (67%, n = 98). Of these various physicians, respondents most frequently reported that a developmental pediatrician initially diagnosed their child (43%, n = 63). According to parents, in approximately 40% of cases (41–45%, n = 60–66), the professional who made the diagnosis also provided additional information about autism and available resources and spent some time discussing autism with the family. In other cases (6–34%, n = 9–50), the professional referred the family to specialists, educational programs, or support groups. However, in 18% of reported cases (n = 26), the professional provided no additional information beyond the diagnosis
To further evaluate what factors might be involved in the provision of information, multinomial logistic regression analysis was conducted to examine the effect of demographic variables (including race, income, education level of parent, rural/mixed/urban region, and child's gender) as well as current diagnosis (i.e., Autism, Asperger's Disorder, PDD-NOS) and provider type on whether or not the professional provided further information about ASD beyond the diagnosis. A logistic regression was used because the outcome variable was dichotomous. See Table for a presentation of the logistic regression findings. The overall regression model, with all demographic variables entered first, was significant, Chi-Square = 28.87, df = 10, p = .001. The results indicated no significant demographic effects and no significant effect for current diagnosis; however, the provider type was significant. Specifically, developmental pediatricians were more likely than other professionals to provide additional information at the time of diagnosis, Chi-Square = 25.07, df = 3, p = .000. A Pearson Chi-square supported these findings, indicating that 96.8% of developmental pediatricians were reported to provide further information, compared to 77.8% of psychiatrists/primary care physicians, 75% of psychologists, and 56% of neurologists, Chi-Square = 21.97, df = 3, p = .000.
Logistic regression predicting whether information was provided by the diagnosing professional
Sources of information
When asked what source helped parents learn more about ASD when the initial diagnosis was received, parents most often reported turning to the media (71–73%, n = 103–107; internet, books, videos, etc.), conferences/workshops (42%, n = 61), or other parents (42%, n = 61). Only 15–20% (n = 22–29) of parents reported obtaining this information from local healthcare, educational, or early intervention professionals. Most parents (64%, n = 94) did report belonging to a parent support or advocacy group. As such, the respondents were less likely to learn about ASD from local healthcare or educational professionals, and more likely to learn from media, conferences, and other parents. See Table for percentages of respondents reporting each source of support.
See Table for a summary of the perceived availability and need for autism-related services. Responses were grouped into those that were rated as high in need (rating of 3–5) and low in local availability (rating of 1–2). The top 5 services that were rated as both highly needed but with little availability included Behavioral Treatment, Social Skills Training, Autism Specialty Clinics, Diagnostic Services, and Sensory or Auditory Integration.
Services perceived as high In need and low in availability