Pilgrimage for an autism diagnosis
A study of Venezuelan parents' experiences
Bibliographic Data
| ID | 2395573 |
|---|---|
| Authors | Cecilia Montiel-Nava (0000-0002-4293-5416, The University of Texas Rio Grande Valley, corresponding author), Irina Vargas (Rafael Urdaneta University), Zoila Gonzalez-Avila (Vancouver Coastal Health), María Cecilia Montenegro (0000-0002-1114-1816, The University of Texas Rio Grande Valley), Ana C Ramírez (0009-0005-5078-9673, The University of Texas Rio Grande Valley) |
| Year | 2024 |
| Volume | 61 |
| Issue | 1 |
| Pages | 95-106 |
| Publication date | 2024-02-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Transcultural Psychiatric Research Review (JOURNAL) |
| Journal identifiers | ISSN: 0041-1108 • E-ISSN: 0315-4386 |
| Publisher | SAGE Publications Inc (PUBLISHER) |
| DOI | 10.1177/13634615231211482 |
| PMID | 37964582 |
| OpenAlex | W4388703340 |
| Language | EN |
| References cited | 49 |
It cannot be assumed that the experience of having an autistic child is the same across countries since demographic and systemic factors are as diverse as the manifestation of ASD symptomatology. This study explores the lived experiences of 20 Venezuelan parents after receiving an autism diagnosis for their child. Applied thematic analysis was used to analyze parental attitudes, challenges in identifying their child's delay, access to diagnostic services, beliefs towards autism, professional evaluations, family support, and perceptions toward health and educational services for autistic children. Venezuelan parents reported a generalized lack of autism awareness, an unsupportive school system, and judgment from their extended family. Despite the universal health coverage in the country, Venezuelan parents commented on the scarcity of services, as well as the lengthy and costly processes to receive an ASD diagnosis. The results support previous research findings showing that socioeconomic factors influence how parents experience the process of obtaining an autism diagnosis for their children. For most Venezuelan parents, it might imply a long journey in which limited resources and knowledge about autism will determine its route and length. For parents, cultural values and spiritual and religious beliefs will serve as both coping mechanisms and barriers to accessing services
Autism · Coping (psychology · Developmental psychology · Perception · Pilgrimage · Population · Psychiatry · Qualitative research · Socioeconomic status · Sociology · Thematic analysis · Autism Spectrum Disorder Research · Child Nutrition and Feeding Issues · Clinical Psychology · Family and Disability Support Research · Medicine · Psychology
Diagnostic and Statistical Manual of Mental Disorders
Applied Thematic Analysis
Mental illness stigma and ethnocultural beliefs, values, and norms
Affiliate Stigma Among Caregivers of People with Intellectual Disability or Mental Illness
Avoiding Ableist Language
Annual Research Review
Lived experiences of caregivers of children with autism spectrum disorder in Kenya
The discovery of autism
Latina Mothers’ Cultural Beliefs About Their Children, Parental Roles, and Education
The Fluidity of Racial Classifications
Parents' Experiences of Caring for a Child With Autism Spectrum Disorder
From symptom recognition to diagnosis
What's wrong with me
Exploring stigma
The doctor's political body
| Citation velocity | historical |
|---|---|
| Highly cited | No |