Date Presented 4/21/2018
The rate of autism continues to rise in the United States. In an attempt to address the issue with a broader perspective, this study explored the various factors influencing the noted disparity in age of diagnosis. The author offers two newly developed models.
Primary Author and Speaker: Varleisha Gibbs
Contributing Authors: Genevieve Zipp
BACKGROUND AND PURPOSE: The rate of autism continues to rise nationally. However, disparities in the age of diagnosis in underrepresented minority groups remain a major concern. Research supports that racial and ethnic disparities are key factors influencing age of diagnosis discrepancies. Traditionally, the medical community has used the biomedical or disability model, set forth in the Diagnostic and Statistical Manual of Mental Disorders, to explore diagnostic differences. However, these models limit health care professionals’ ability to examine elements outside of pathology. In an attempt to address the issue with a broader perspective, this study explored the various factors influencing the noted disparity in age of diagnosis of autism spectrum disorder (ASD) in underrepresented minority groups. The biopsychosocial model provided a comprehensive view to examine and define disparities in the diagnostic process.
METHOD: This study used a retrospective cohort design to conduct a secondary data analysis on the Survey of Pathways to Diagnosis and Services 2011 survey data. This National Institute of Health database houses past parental telephone interviews and self-administered surveys regarding personal accounts before and along the journey toward children receiving the ASD diagnosis. It is one of the largest and most reliable sources of national data representing the U.S. autism population.
After obtaining data access, the principal investigator (PI) conducted data cleaning and stratification. The PI implemented a random selection process to identify 150 participants in two groups, Caucasian and underrepresented minorities (URM), for further review. Statistical analysis included descriptive, parametric, and nonparametric tests.
RESULTS: Nonsignificant differences were found in age of diagnosis, age of concern, and child’s age at which parent consulted with a medical professional. However, an apparent discrepancy existed in the age of concern and age of diagnosis for both groups. Furthermore, for parental educational level, there was a significant correlation to child’s age at which the parent consulted a medical professional. URM parents reported more concerns regarding symptoms and behaviors of their child compared with Caucasian parents.
CONCLUSION: The findings of this study highlight a key concern regarding a notable gap between the child’s age when parents sought out consultation with a medical professional, based on their observed concerns, and the child’s age of diagnosis among all racial groups. The study observations provide insight that personal factors in parents and children result in a higher age of concern, seeking of a medical professional, and age of diagnosis. Personal factors include the components of the theoretical model: society and medical professionals, culture, community and family, primary caregiver, and symptomatology. The findings offer two theoretical models to explore.
IMPACT STATEMENT: Occupational therapy practitioners must expand their awareness of the multifaceted influences that may reduce the gap between the child’s age when concerns are noted and age when a diagnosis of ASD occurs. In addition, practitioners must acknowledge the role the profession plays in the diagnostic process. On the basis of the inferences gleaned from this work, future research should address the two person factors and explore use of more qualitative methodology.
References
Gibbs, V., Aldridge, F., Chandler, F., Witzlsperger, E., & Smith, K. (2012). Brief report: An exploratory study comparing diagnostic outcomes for autism spectrum disorders under DSM–IV–TR with the proposed DSM–5 revision. Journal of Autism and Developmental Disorders, 42, 1750–1756. https://doi.org/10.1007/s10803-012-1560-6.
King, D. W., Hurd, T. C., Hajek, R. A., & Jones, L. A. (2009). Using a biopsychosocial approach to address health disparities—One person’s vision. Journal of Cancer Education, 24, S26–S32. https://doi.org/10.1007/BF03182308
Rosenberg, R. E., Landa, R., Law, J. K., Stuart, E. A., & Law, P. A. (2011). Factors affecting age at initial autism spectrum disorder diagnosis in a national survey. Autism Research and Treatment, 2011, 874619. https://doi.org/10.1155/2011/874619
