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Practices Surrounding Autism over-Diagnosis and Under-Diagnosis: Results from a National Healthcare Provider Survey

Poster Presentation
Friday, May 3, 2019: 5:30 PM-7:00 PM
Room: 710 (Palais des congres de Montreal)
A. Azim1, K. Zuckerman2, C. R. Candelaria-Rosario3, C. Ponce4, R. Phelps5 and R. Rdesinski6, (1)Oregon Health and Science University, Portland, OR, (2)Division of General Pediatrics, Oregon Health & Science University, Portland, OR, (3)Biology, Pontificia Universidad de Puerto Rico, Arecibo, Puerto Rico, (4)Department of Pediatrics, Oregon Health and Science University, Portland, OR, (5)Child Development and Rehabilitation Center, Institute on Development and Disabilities, Oregon Health and Science University, Portland, OR, (6)Department of Family Medicine, Oregon Health and Science University, Portland, OR
Background: The prevalence of autism spectrum disorder (ASD) increased tenfold in the last 40 years, prompting concern about autism misdiagnosis and over-diagnosis. Few studies have assessed ASD over- or under-diagnosis, or the practice of assigning ASD diagnoses for children not meeting Diagnostic Statistical Manual (DSM) criteria.

Objectives: To measure rates of healthcare provider-reported over- and under-diagnosis of ASD in a national sample of U.S. ASD providers. To assess providers’ reasons for over- and/or under-diagnosis of ASD.

Methods: A mixed-mode (email/mail) survey was sent to all members of the Society of Developmental and Behavioral Pediatrics (SDBP) who indicated a clinical interest in ASD, performed at least 5 ASD evaluations in the prior year, and who were currently practicing in the US. Each respondent used a Likert-type scale to indicate: (1) whether he/she thought autism was over-diagnosed, under-diagnosed, or diagnosed at the appropriate rate; (2) whether he/she had personally diagnosed a child with ASD when the child did not meet DSM criteria (“over-diagnosis”); (3) whether other providers in his/her area over-diagnose children with ASD; (4) whether he/she had personally not diagnosed a child with ASD when the child did meet DSM criteria (“under-diagnosis”). Reasons for under- and over-diagnosis of ASD were assessed. Descriptive statistics were used to assess rates of self-reported over- and under- diagnosis, and multivariable logistic regression was used to assess variability in responses according to respondent gender, years in practice, and US region

Results: 217/347 (63%) of eligible providers completed the survey. Overall, 48% of providers thought that autism was diagnosed at an appropriate rate. More providers thought ASD was over diagnosed (32%) than underdiagnosed (19%; p = 0.008). 8.8% of providers self-reported over-diagnosing ASD at least sometimes; however, 58% reported that other providers over-diagnosed ASD at least sometimes. Commonly-cited reasons for ASD over-diagnosis included: assisting in access to school services (46.1%) and assisting in access to medical services through health insurance (47.6%). Male providers were significantly more likely to self-report over-diagnosing ASD compared to female providers (16.7% versus 5.7%; Adjusted Odds Ratio 3.24 [95% Confidence Interval 1.17-9.02]). 7.8% of providers self-reported under-diagnosing ASD. There were no significant provider demographic associations with under-diagnosis. Commonly-cited reasons for under-diagnosis included: parents really did not desire the diagnosis (35.4%) and parents weren’t ready to hear the diagnosis (43.4%).

Conclusions: Relatively few U.S. providers self-report over-diagnosis of ASD; however, they report that this practice pattern is widespread among local colleagues. Under-diagnosis was less common. Study results suggest that ASD over- and under-diagnosis may be occurring in a meaningful portion of reported ASD cases in the US. Over-diagnosis may present an effort on behalf of ASD providers to facilitate access to limited services.