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Barriers to Early Diagnosis in Children with Autism Spectrum Disorder: Preliminary Results
Autism Spectrum Disorder (ASD) is a complex neurodevelopmental disorder with no conclusive cause or cure. ASD is the fastest growing developmental disability in the United States, currently affecting 1 in 68 children (Autism Speaks, 2014). Researchers have established that early recognition and intervention are critical in the long-term outcomes of children with ASD. However, many children do not receive these services in a timely way. Therefore, the purpose of this descriptive study is to elucidate perceived barriers to early diagnosis in children with ASD.
Objectives:
The objective of this study is to identify healthcare professionals’ perceptions of barriers to early diagnosis in children with ASD.
Methods:
The investigators developed an Internet survey comprised of open-ended and closed-ended questions. Initial survey questions were constructed based on an extensive literature review. After IRB approval, questions were presented to an interdisciplinary Community Advisory Board (CAB) consisting of nine ASD professionals to obtain feedback. The final survey was constructed online using REDcap (Research Electronic Data Capture) and disseminated to healthcare professionals throughout the state of Florida. Statistical outcomes were calculated in REDcap.
Results:
To date, thirty-four responses have been obtained and more are expected prior to the IMFAR conference. All but two respondents (5.9%) identified barriers to accurate, timely diagnoses in children with ASD. The barriers identified included socioeconomic factors (67.6%), medical insurance constraints (67.6%), geographical location (32.4%), limited transportation (35.3%), limited parental education (85.3%), not knowing where to seek help (85.3%), culture (58.8%), time constraints (23.5%), language (38.2%), uneducated providers (67.6%), lack of family acceptance (70.6%), and provider hesitancy (55.9%).
Conclusions:
These preliminary findings help to validate the clinical impression that barriers to receiving an early diagnosis in children with ASD exist and indicate a need for further research. Furthermore, these findings allow us to understand the types of barriers encountered by families of children with ASD from the perspectives of healthcare professionals. Additionally, these findings inform healthcare professionals about potential barriers to early diagnosis of ASD in children and have the ability to reduce these barriers through an improved understanding.