Satisfaction with the journey of receiving a diagnosis of autism: Experiences of Indian parents
Objectives: The objective is to examine the experiences of parents regarding receiving a diagnosis of autism spectrum disorder (ASD) for their child and the factors influencing parental satisfaction with the process of diagnosis. Methodology: Eighty-five children (2–12 years) with ASD (DSM 5 criteri...
| Main Authors: | , , |
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| Format: | Article |
| Language: | English |
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Wolters Kluwer Medknow Publications
2023-01-01
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| Series: | Indian Journal of Social Psychiatry |
| Subjects: | |
| Online Access: | http://www.indjsp.org/article.asp?issn=0971-9962;year=2023;volume=39;issue=2;spage=168;epage=174;aulast=Malhi |
| _version_ | 1797649277561864192 |
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| author | Prahbhjot Malhi K Venkata Durga Prasad Renu Suthar |
| author_facet | Prahbhjot Malhi K Venkata Durga Prasad Renu Suthar |
| author_sort | Prahbhjot Malhi |
| collection | DOAJ |
| description | Objectives: The objective is to examine the experiences of parents regarding receiving a diagnosis of autism spectrum disorder (ASD) for their child and the factors influencing parental satisfaction with the process of diagnosis. Methodology: Eighty-five children (2–12 years) with ASD (DSM 5 criteria) were consecutively recruited from the department of pediatrics of a tertiary care hospital in north India over 2 years. A semi-structured questionnaire was used to elicit information regarding early developmental concerns, age at the first visit to a professional, kinds of professionals consulted, diagnoses considered, and time taken to receive a definitive diagnosis of autism. Parents were asked to self-report their level of satisfaction with the diagnostic process on a three-point scale. Results: Overall, the mean age at first parental concern was 2.16 years (standard deviation [SD] = 1.04). Parents on average waited for 7 months before consulting a specialist. The mean age of diagnosis was 4.67 years (SD = 2.42). Analysis of diagnoses received before the diagnosis of ASD revealed that despite early parental concerns, one-fourth did not receive any specific diagnosis, one-fourth of the parents were told that their child was developing normally, and the majority were misdiagnosed (42.4%). A definitive diagnosis of autism took nearly 2½ years from the time when parents first started to have concerns about their child's development. The majority (51.8%) of the parents reported being dissatisfied with their diagnostic experiences, and the level of satisfaction was primarily explained by the number of professionals consulted for a diagnosis of autism (F = 6.54, P = 0.012). Conclusions: The findings underscore the need to educate primary care clinicians regarding the early signs of autism and to be respectful of parental concerns to make a timely diagnosis of autism and initiate evidence-based early interventions. |
| first_indexed | 2024-03-11T15:44:49Z |
| format | Article |
| id | doaj.art-2286b573cf0840bd9570572056fb8424 |
| institution | Directory Open Access Journal |
| issn | 0971-9962 |
| language | English |
| last_indexed | 2024-03-11T15:44:49Z |
| publishDate | 2023-01-01 |
| publisher | Wolters Kluwer Medknow Publications |
| record_format | Article |
| series | Indian Journal of Social Psychiatry |
| spelling | doaj.art-2286b573cf0840bd9570572056fb84242023-10-26T06:50:33ZengWolters Kluwer Medknow PublicationsIndian Journal of Social Psychiatry0971-99622023-01-0139216817410.4103/ijsp.ijsp_331_20Satisfaction with the journey of receiving a diagnosis of autism: Experiences of Indian parentsPrahbhjot MalhiK Venkata Durga PrasadRenu SutharObjectives: The objective is to examine the experiences of parents regarding receiving a diagnosis of autism spectrum disorder (ASD) for their child and the factors influencing parental satisfaction with the process of diagnosis. Methodology: Eighty-five children (2–12 years) with ASD (DSM 5 criteria) were consecutively recruited from the department of pediatrics of a tertiary care hospital in north India over 2 years. A semi-structured questionnaire was used to elicit information regarding early developmental concerns, age at the first visit to a professional, kinds of professionals consulted, diagnoses considered, and time taken to receive a definitive diagnosis of autism. Parents were asked to self-report their level of satisfaction with the diagnostic process on a three-point scale. Results: Overall, the mean age at first parental concern was 2.16 years (standard deviation [SD] = 1.04). Parents on average waited for 7 months before consulting a specialist. The mean age of diagnosis was 4.67 years (SD = 2.42). Analysis of diagnoses received before the diagnosis of ASD revealed that despite early parental concerns, one-fourth did not receive any specific diagnosis, one-fourth of the parents were told that their child was developing normally, and the majority were misdiagnosed (42.4%). A definitive diagnosis of autism took nearly 2½ years from the time when parents first started to have concerns about their child's development. The majority (51.8%) of the parents reported being dissatisfied with their diagnostic experiences, and the level of satisfaction was primarily explained by the number of professionals consulted for a diagnosis of autism (F = 6.54, P = 0.012). Conclusions: The findings underscore the need to educate primary care clinicians regarding the early signs of autism and to be respectful of parental concerns to make a timely diagnosis of autism and initiate evidence-based early interventions.http://www.indjsp.org/article.asp?issn=0971-9962;year=2023;volume=39;issue=2;spage=168;epage=174;aulast=Malhiautismdiagnosisparental experiencesparental satisfaction |
| spellingShingle | Prahbhjot Malhi K Venkata Durga Prasad Renu Suthar Satisfaction with the journey of receiving a diagnosis of autism: Experiences of Indian parents Indian Journal of Social Psychiatry autism diagnosis parental experiences parental satisfaction |
| title | Satisfaction with the journey of receiving a diagnosis of autism: Experiences of Indian parents |
| title_full | Satisfaction with the journey of receiving a diagnosis of autism: Experiences of Indian parents |
| title_fullStr | Satisfaction with the journey of receiving a diagnosis of autism: Experiences of Indian parents |
| title_full_unstemmed | Satisfaction with the journey of receiving a diagnosis of autism: Experiences of Indian parents |
| title_short | Satisfaction with the journey of receiving a diagnosis of autism: Experiences of Indian parents |
| title_sort | satisfaction with the journey of receiving a diagnosis of autism experiences of indian parents |
| topic | autism diagnosis parental experiences parental satisfaction |
| url | http://www.indjsp.org/article.asp?issn=0971-9962;year=2023;volume=39;issue=2;spage=168;epage=174;aulast=Malhi |
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