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"I'm His Voice": Parent Perspectives on Obtaining an Autism Diagnosis and Services and the Influence of Personal and Cultural Factors.

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Title: "I'm His Voice": Parent Perspectives on Obtaining an Autism Diagnosis and Services and the Influence of Personal and Cultural Factors.
Authors: Rea, Corinna J. (AUTHOR), Lesch, Kayla (AUTHOR), Hernandez, Barbara (AUTHOR), Hayes, Makeyla (AUTHOR), Sprecher, Eli (AUTHOR), Epee-Bounya, Alexandra (AUTHOR), Wilson, Kimberly (AUTHOR), Shah, Snehal N. (AUTHOR)
Source: Journal of Autism & Developmental Disorders. Mar2026, Vol. 56 Issue 3, p1115-1130. 16p.
Subjects: Diagnosis of autism, Treatment of autism, Health services accessibility, Scale analysis (Psychology), Medical quality control, Interviewing, Content analysis, Primary health care, Parent attitudes, Descriptive statistics, Judgment sampling, Thematic analysis, Research methodology, Asperger's syndrome, Parents of children with disabilities, Self advocacy, Health equity, Psychosocial factors
Abstract: To assess caregiver-reported barriers and facilitators to receiving a diagnosis of Autism Spectrum Disorder (ASD) and accessing services as well as the influence of personal and cultural factors.Participants included 29 parents whose children had been diagnosed with ASD between January 2019 and November 2021 while receiving primary care at one of two urban, hospital-affiliated clinics. Semi-structured interviews and surveys were conducted between May 2022 and June 2023 in both English and Spanish. Transcripts were coded and themes developed using thematic content analysis. In the survey portion of the study, 80% of parents said the experience of getting the diagnosis was "very easy/somewhat easy," while 28% of parents said the process of accessing autism services was "very difficult." Four general categories emerged from the qualitative analysis: (1) experience getting the diagnosis, (2) service navigation after diagnosis, (3) need for parent advocacy, and (4) perception of condition by others. Parents generally reported positive experiences with their pediatricians, but some felt their concerns were discounted due to personal factors. The most common frustration expressed was difficulty accessing Applied Behavior Analysis therapy after a diagnosis due to long waiting lists, staff turnover and poor quality. Many parents felt that it would be helpful to have a family navigator to assist with paperwork, insurance complexities, and service access. Parents reported many challenges obtaining an autism diagnosis as well as accessing services. Widespread system change will be required to meet the needs of families equitably and effectively. [ABSTRACT FROM AUTHOR]
Copyright of Journal of Autism & Developmental Disorders is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: "I'm His Voice": Parent Perspectives on Obtaining an Autism Diagnosis and Services and the Influence of Personal and Cultural Factors.
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  Data: <searchLink fieldCode="JN" term="%22Journal+of+Autism+%26+Developmental+Disorders%22">Journal of Autism & Developmental Disorders</searchLink>. Mar2026, Vol. 56 Issue 3, p1115-1130. 16p.
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  Data: <searchLink fieldCode="DE" term="%22Diagnosis+of+autism%22">Diagnosis of autism</searchLink><br /><searchLink fieldCode="DE" term="%22Treatment+of+autism%22">Treatment of autism</searchLink><br /><searchLink fieldCode="DE" term="%22Health+services+accessibility%22">Health services accessibility</searchLink><br /><searchLink fieldCode="DE" term="%22Scale+analysis+%28Psychology%29%22">Scale analysis (Psychology)</searchLink><br /><searchLink fieldCode="DE" term="%22Medical+quality+control%22">Medical quality control</searchLink><br /><searchLink fieldCode="DE" term="%22Interviewing%22">Interviewing</searchLink><br /><searchLink fieldCode="DE" term="%22Content+analysis%22">Content analysis</searchLink><br /><searchLink fieldCode="DE" term="%22Primary+health+care%22">Primary health care</searchLink><br /><searchLink fieldCode="DE" term="%22Parent+attitudes%22">Parent attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Descriptive+statistics%22">Descriptive statistics</searchLink><br /><searchLink fieldCode="DE" term="%22Judgment+sampling%22">Judgment sampling</searchLink><br /><searchLink fieldCode="DE" term="%22Thematic+analysis%22">Thematic analysis</searchLink><br /><searchLink fieldCode="DE" term="%22Research+methodology%22">Research methodology</searchLink><br /><searchLink fieldCode="DE" term="%22Asperger's+syndrome%22">Asperger's syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22Parents+of+children+with+disabilities%22">Parents of children with disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Self+advocacy%22">Self advocacy</searchLink><br /><searchLink fieldCode="DE" term="%22Health+equity%22">Health equity</searchLink><br /><searchLink fieldCode="DE" term="%22Psychosocial+factors%22">Psychosocial factors</searchLink>
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  Data: To assess caregiver-reported barriers and facilitators to receiving a diagnosis of Autism Spectrum Disorder (ASD) and accessing services as well as the influence of personal and cultural factors.Participants included 29 parents whose children had been diagnosed with ASD between January 2019 and November 2021 while receiving primary care at one of two urban, hospital-affiliated clinics. Semi-structured interviews and surveys were conducted between May 2022 and June 2023 in both English and Spanish. Transcripts were coded and themes developed using thematic content analysis. In the survey portion of the study, 80% of parents said the experience of getting the diagnosis was "very easy/somewhat easy," while 28% of parents said the process of accessing autism services was "very difficult." Four general categories emerged from the qualitative analysis: (1) experience getting the diagnosis, (2) service navigation after diagnosis, (3) need for parent advocacy, and (4) perception of condition by others. Parents generally reported positive experiences with their pediatricians, but some felt their concerns were discounted due to personal factors. The most common frustration expressed was difficulty accessing Applied Behavior Analysis therapy after a diagnosis due to long waiting lists, staff turnover and poor quality. Many parents felt that it would be helpful to have a family navigator to assist with paperwork, insurance complexities, and service access. Parents reported many challenges obtaining an autism diagnosis as well as accessing services. Widespread system change will be required to meet the needs of families equitably and effectively. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Journal of Autism & Developmental Disorders is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
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RecordInfo BibRecord:
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      – Type: doi
        Value: 10.1007/s10803-024-06556-3
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      – Code: eng
        Text: English
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        PageCount: 16
        StartPage: 1115
    Subjects:
      – SubjectFull: Diagnosis of autism
        Type: general
      – SubjectFull: Treatment of autism
        Type: general
      – SubjectFull: Health services accessibility
        Type: general
      – SubjectFull: Scale analysis (Psychology)
        Type: general
      – SubjectFull: Medical quality control
        Type: general
      – SubjectFull: Interviewing
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      – SubjectFull: Content analysis
        Type: general
      – SubjectFull: Primary health care
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      – SubjectFull: Parent attitudes
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      – SubjectFull: Descriptive statistics
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      – SubjectFull: Judgment sampling
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      – SubjectFull: Self advocacy
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      – SubjectFull: Health equity
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      – SubjectFull: Psychosocial factors
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      – TitleFull: "I'm His Voice": Parent Perspectives on Obtaining an Autism Diagnosis and Services and the Influence of Personal and Cultural Factors.
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              Text: Mar2026
              Type: published
              Y: 2026
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