OTSLPCohortAutism research : official journal of the International Society for Autism Research2020

Autism Heterogeneity in a Densely Sampled U.S. Population: Results From the First 1,000 Participants in the RI-CART Study.

Carolyn E B McCormick, Brian C Kavanaugh, Danielle Sipsock and 20 others

PMID 31957984

WHAT IT FOUND

Autism presentations in this population were highly heterogeneous.

Many participants had co-occurring medical, psychiatric, or neurological conditions, and girls were diagnosed later than boys, with verbal status linked to earlier diagnosis in boys.

Key findings

01Community ASD diagnoses and ADOS-2 results agreed for 90.8% of participants with a community ASD diagnosis.

02Among 879 participants with available data, 92.5% reported at least one general medical condition, 47.0% reported another neurodevelopmental disorder, 44.1% reported a psychiatric disorder, 42.7% reported a neurological condition, and 28.4% reported other behavioral problems.

03Females received their first ASD diagnosis nearly 1.5 years later than males, and verbal status predicted age at diagnosis in males.

STILL TO COME

How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs

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What it does not show

The sample is mostly Rhode Island and nearby areas, so it may not represent all autism populations in the United States. Participants with a community diagnosis but negative or unavailable ADOS-2 scores were mixed into the ASD-Inclusive group, so the groups are not clean diagnostic categories. Ascertainment was lower in neighborhoods with low socioeconomic status and higher minority representation, so underrepresented groups may be missed. Intellectual disability was reported at 19.3%, much lower than other cohorts, and the authors say this may be under-reported. Some comorbidity analyses used 879 participants with available data, not all 1,000. Reasons for lack of a community ASD diagnosis were not recorded, so it is unclear why some participants had no diagnosis.

Declared interests

The article lists research support from NIH and non-U.S. government sources. The authors report no biomedical financial interests or potential conflicts of interest.

The easy way to misread this

Do not conclude that females have milder autism because they were diagnosed later. The study did not find sex differences in ASD symptoms, and verbal status predicted age at diagnosis in males.

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