Autism care pathway in Europe

Area of Science:

• Neurodevelopmental Disorders
• Public Health Policy
• Healthcare Access

Background:

• Autism Spectrum Disorder (ASD) is a complex neurodevelopmental condition impacting individuals and families.
• A lack of harmonized European guidelines hinders effective early detection, diagnosis, and intervention for autism.
• This results in suboptimal experiences for autistic individuals and their caregivers.

Purpose of the Study:

• To analyze the care pathway for autistic children and adolescents in Italy, Spain, and the UK.
• To identify barriers and treatment gaps in accessing information, support, and timely services for autistic individuals and their families.
• To inform policy recommendations for improving the autism care journey.

Main Methods:

• A survey administered to caregivers of autistic children aged 0-18 years.
• Analysis of the autism care pathway from the perspectives of caregivers, the autistic community, and professionals.
• Cross-country comparison of care experiences in Italy, Spain, and the UK.

Main Results:

• Significant delays were observed between initial concerns and confirmed autism diagnosis.
• Access to interventions post-diagnosis was frequently delayed or unavailable.
• Information and support for families throughout the autism journey were limited and deficient.

Conclusions:

• Policy harmonization across Europe is essential to reduce wait times for autism diagnosis and intervention.
• Improving the care pathway will enhance the quality of life for autistic individuals and their families.
• Addressing identified barriers is critical for a more equitable and effective autism support system.