The Diagnostic Odyssey of Autism Spectrum Disorder

Area of Science:

• Neurodevelopmental Disorders
• Child Psychology
• Healthcare Access

Background:

• Autism spectrum disorder (ASD) is a neurodevelopmental condition impacting social communication and behavior.
• Early diagnosis is crucial, yet many families face significant delays in accessing autism diagnosis and services.
• Understanding parental experiences is vital for improving diagnostic pathways.

Purpose of the Study:

• To identify individual, social, and structural factors influencing parents' experiences with their child's autism diagnosis.
• To explore the multifaceted journey of autism diagnosis from the parents' perspective.

Main Methods:

• Conducted semistructured interviews with parents of 25 children diagnosed with autism.
• Utilized grounded theory, an inductive qualitative analysis method, to identify key themes.
• Analyzed 60- to 90-minute interviews transcribed verbatim.

Main Results:

• The diagnostic process was characterized as an "odyssey" with three phases: prediagnosis ("Making Sense of Child Difference"), during-diagnosis ("Navigating Diagnosis"), and postdiagnosis ("Connecting to Services").
• Systematic barriers impact the timing of diagnosis, and personal efforts are crucial for accessing care.
• Key themes highlight the "odyssey" of autism diagnosis, involving sense-making, navigating barriers, and connecting to services.

Conclusions:

• Parental experiences of autism diagnosis are influenced by a complex interplay of individual, social, and structural factors.
• There is a need for consistent support throughout the diagnostic journey for autistic individuals and their families.
• Resources should better reflect the diverse experiences and symptoms of autism across the lifespan.