# Humanizing medical care for individuals with autism spectrum disorder and their families: the experience of healthcare support in the Comprehensive Medical Care Unit for individuals with ASD (AMITEA)

## TL;DR

This study examines the experiences of patients with autism, caregivers, and healthcare professionals in a specialized care program in Spain, highlighting both strengths and limitations in providing humanized care.

## Contribution

The study provides qualitative insights into user experiences within a specialized ASD healthcare program, emphasizing the need for extended support and training.

## Key findings

- AMITEA's strengths include personalized care, communication, and sensory-friendly environments.
- Limitations include poor external coordination, limited resources, and lack of ASD training for non-specialist professionals.
- Specialized, patient-centered approaches can improve equity and humanization in healthcare systems.

## Abstract

Autism spectrum disorder (ASD) is a neurodevelopmental condition frequently associated with comorbidities and high support needs, posing significant challenges for the provision of patient-centered and humanized healthcare. Specialized healthcare programs have been developed to address these needs, yet evidence on user experiences within such models remains limited.

This qualitative study explored the experiences of patients with ASD, caregivers, and healthcare professionals involved in AMITEA, a specialized public healthcare program in Madrid, Spain. Three focus groups (n = 24) were conducted following the Picker model of patient-centered care. Data were analyzed using a hermeneutic phenomenological approach, in accordance with COREQ guidelines.

Participants reported several strengths of the AMITEA program, including respectful and personalized care, effective communication, emotional support, coordination across hospital services, and environmental adaptations tailored to sensory needs. Identified limitations included insufficient coordination beyond the specialized unit, limited resources, challenges during the transition to adulthood, barriers in referral processes, and a lack of ASD-specific training among professionals outside the program.

The findings highlight the value of specialized, patient-centered approaches for individuals with ASD, emphasizing the importance of personalized support, adapted environments, and professional training. Extending these practices beyond specialized units may contribute to improved equity, continuity, and humanization of care across healthcare systems.