Date of Award

Spring 5-15-2017

Degree Type

Dissertation

Degree Name

PhD Health Sciences

Department

Health and Medical Sciences

Advisor

Genevieve Pinto-Zipp, Ed.D

Committee Member

Deborah A. DeLuca, JD

Committee Member

Terrence F. Cahill, Ed.D

Keywords

Autism, Diagnosis, Disparity, Race, Socioeconomic Status

Abstract

Background and Purpose of the Study

The rate of Autism continues to rise nationally. However, disparities in the age of diagnosis amongst underrepresented minority groups, still remains a major concern. Research supports that racial and ethnic disparities are key factors influencing noted age of diagnosis discrepancies. Traditionally, the medical community has used the biomedical or disability model, as revealed in the Diagnostic Statistical Manual of Mental Disorders, to explore diagnostic differences. However, these models limit the healthcare professional’s ability to examine elements outside of pathology. In attempt to address the issue with a broader perspective, this study explored the various factors impacting the noted disparity in the age of diagnoses of Autism Spectrum Disorder (ASD), in under-represented minority groups. The Biopsychosocial model provided a comprehensive view to examine and define the disparities in the diagnostic process.

Methods

For this study, the researcher employed a retrospective Cohort Design to conduct a secondary data analysis on the Survey of Pathways to Diagnosis and Services, 2011 survey data. The database houses past parental telephone interviews and self-administered surveys regarding personal recounts before and along the journey towards children receiving the ASD diagnosis. After obtaining data access, the principle investigator (PI) conducted data cleaning, and stratification. The PI implemented a random selection process to identify 150 subjects for the groups, Caucasian and Underrepresented Minorities (URM) groups for further review.

Results

The findings resulted in non-significant differences 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, parental educational level correlated to the child’s age for when the parent consulted a medical professional. Lastly, URM group parents reported more concerns regarding symptoms and behaviors of their child as compared with Caucasian children.

Discussion/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 upon their observed concerns, and the child’s age of diagnosis amongst all racial groups. Thus, healthcare professionals must expand their awareness of the multi-faceted influences that may reduce the gap between the child’s age when concerns are noted and their age when a diagnosis occurs. The findings offer two theoretical models to explore. The study observations provide insight that more personal factors, possessed by the parent and child, 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. Based upon the inferences gleaned from this work, future research should address the two-person factors and explore use of more qualitative methodology.

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