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Accuracy of Reported Community Diagnosis of Autism Spectrum Disorder

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Abstract

To compare community diagnoses of Autism Spectrum Disorder (ASD) reported by parents to consensus diagnoses made using standardized tools plus clinical observation. 87 participants (85% male, average age 7.4 years), with reported community diagnosis of ASD were evaluated using the Autism Diagnostic Observation Schedule) (ADOS-2), Differential Ability Scale (DAS-II), and Vineland Adaptive Behavior Scales (VABS-II). Detailed developmental and medical history was obtained from all participants. Diagnosis was based on clinical consensus of at least two expert clinicians, using test results, clinical observations, and parent report. 23% of participants with a reported community diagnosis of ASD were classified as non-spectrum based on our consensus diagnosis. ASD and non-spectrum participants did not differ on age at evaluation and age of first community diagnosis. Non-verbal IQ scores and Adaptive Behavior Composite scores were significantly higher in the non-spectrum group compared to the ASD group (104.5 ± 21.7 vs. 80.1 ± 21.6, p < .01; 71.1 ± 15 versus 79.5 ± 17.6, p < .05, respectively). Participants enrolled with community diagnosis of PDD-NOS were significantly more likely to be classified as non-spectrum on the study consensus diagnosis than Participants with Autism or Asperger (36% versus 9.5%, Odds Ratio = 5.4, p < .05). This study shows suboptimal agreement between community diagnoses of ASD and consensus diagnosis using standardized instruments. These findings are based on limited data, and should be further studied, taking into consideration the influence of DSM 5 diagnostic criteria on ASD prevalence.

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Fig. 1
Fig. 2: Distribution of study consensus diagnosis among participants.

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Abbreviations

ADOS:

Autism diagnostic observation schedule

ASD:

Autism spectrum disorder

CSS:

Calibrated severity score

PDD-NOS:

Pervasive developmental disorder not otherwise specified

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Funding

This study was funded by NIH NCATS CTSA 2UL TR000457–06.

The funder had no involvement in the study design, collection, analysis and interpretation of the data, writing of the report, and in the decision to submit the paper for publication.

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  1. Moran Hausman-Kedem

    Present address: Pediatric Neurology and Child Development Center, Dana-Dwek Childrens’ Hospital, Tel Aviv Sourasky Medical Center, Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel

Authors and Affiliations

  1. Department of Pediatrics, Weill Cornell Medical College, New York Presbyterian Hospital, New York, NY, 10065, USA

    Moran Hausman-Kedem, Barry E. Kosofsky, Gail Ross, Kaleb Yohay, Emily Forrest, Reena Patel & Mary J. Ward

  2. Division of Pediatric Neurology, Weill Cornell Medical College/New York Presbyterian Hospital, New York, NY, USA

    Moran Hausman-Kedem, Barry E. Kosofsky & Kaleb Yohay

  3. Department of Neurology & Neuroscience, Weill Cornell Medical College, New York, NY, USA

    Barry E. Kosofsky & Kaleb Yohay

  4. Clinical and Translational Science Center, Weill Cornell Medical College, New York, NY, USA

    Margaret H. Dennin, Kristen Bennett & James P. Holahan

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Moran Hausman-Kedeml, Barry E. Kosofsky, Gail Ross, Kaleb Yohay, Emily Forrest, Margaret H. Dennin, Reena Patel, Kristen Bennett, James P. Holahan and Mary J. Ward declare that there is no conflict of interest.

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Hausman-Kedem, M., Kosofsky, B.E., Ross, G. et al. Accuracy of Reported Community Diagnosis of Autism Spectrum Disorder. J Psychopathol Behav Assess 40, 367–375 (2018). https://doi.org/10.1007/s10862-018-9642-1

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