COVID-19 Pandemic Experiences of Families in Which a Child/Youth Has Autism and Their Service Providers: Perspectives and Lessons Learned.

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Title: COVID-19 Pandemic Experiences of Families in Which a Child/Youth Has Autism and Their Service Providers: Perspectives and Lessons Learned.
Authors: Nicholas, David B., Zulla, Rosslynn T., Cielsielski, Jill, Zwaigenbaum, Lonnie, Conlon, Olivia
Source: Journal of Autism & Developmental Disorders. Aug2025, Vol. 55 Issue 8, p2706-2717. 12p.
Subjects: Families & psychology, Health services accessibility, Research funding, Qualitative research, Autism, Medical care, Interviewing, Pandemic preparedness, Family attitudes, Experience, Attitudes of medical personnel, Asperger's syndrome, COVID-19 pandemic, Well-being
Abstract: Purpose: The impacts of the COVID-19 pandemic on autistic children/youth and their families and on service providers are not yet well-understood. This study explored the lived experiences of families with an autistic child and service providers who support them regarding the impacts of the pandemic on service delivery and well-being. Methods: In this qualitative study, families and service providers (e.g., early intervention staff, service providers, school personnel) supporting autistic children/youth were interviewed. Participants were recruited from a diagnostic site and two service organizations that support autistic children/youth. Results: Thirteen parents and 18 service providers participated in either an individual or group interview. Findings indicate challenges associated with pandemic restrictions and resulting service shifts. These challenges generally imposed negative experiences on the daily lives of autistic children/youth and their families, as well as on service providers. While many were adversely affected by service delivery changes, families and service agencies/providers pivoted and managed challenges. Shifts have had varied impacts, with implications to consider in pandemic planning and post-pandemic recovery. Conclusion: Results highlight the need for autism-focused supports, as well as technology and pandemic preparedness capacity building within health, therapeutic and educational sectors in order to better manage shifts in daily routines during emergencies such as a pandemic. Findings also offer instructive consideration in service delivery post-pandemic. [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.)
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  Data: COVID-19 Pandemic Experiences of Families in Which a Child/Youth Has Autism and Their Service Providers: Perspectives and Lessons Learned.
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  Data: <searchLink fieldCode="AR" term="%22Nicholas%2C+David+B%2E%22">Nicholas, David B.</searchLink><br /><searchLink fieldCode="AR" term="%22Zulla%2C+Rosslynn+T%2E%22">Zulla, Rosslynn T.</searchLink><br /><searchLink fieldCode="AR" term="%22Cielsielski%2C+Jill%22">Cielsielski, Jill</searchLink><br /><searchLink fieldCode="AR" term="%22Zwaigenbaum%2C+Lonnie%22">Zwaigenbaum, Lonnie</searchLink><br /><searchLink fieldCode="AR" term="%22Conlon%2C+Olivia%22">Conlon, Olivia</searchLink>
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  Data: <searchLink fieldCode="JN" term="%22Journal+of+Autism+%26+Developmental+Disorders%22">Journal of Autism & Developmental Disorders</searchLink>. Aug2025, Vol. 55 Issue 8, p2706-2717. 12p.
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  Data: <searchLink fieldCode="DE" term="%22Families+%26+psychology%22">Families & psychology</searchLink><br /><searchLink fieldCode="DE" term="%22Health+services+accessibility%22">Health services accessibility</searchLink><br /><searchLink fieldCode="DE" term="%22Research+funding%22">Research funding</searchLink><br /><searchLink fieldCode="DE" term="%22Qualitative+research%22">Qualitative research</searchLink><br /><searchLink fieldCode="DE" term="%22Autism%22">Autism</searchLink><br /><searchLink fieldCode="DE" term="%22Medical+care%22">Medical care</searchLink><br /><searchLink fieldCode="DE" term="%22Interviewing%22">Interviewing</searchLink><br /><searchLink fieldCode="DE" term="%22Pandemic+preparedness%22">Pandemic preparedness</searchLink><br /><searchLink fieldCode="DE" term="%22Family+attitudes%22">Family attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Experience%22">Experience</searchLink><br /><searchLink fieldCode="DE" term="%22Attitudes+of+medical+personnel%22">Attitudes of medical personnel</searchLink><br /><searchLink fieldCode="DE" term="%22Asperger's+syndrome%22">Asperger's syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22COVID-19+pandemic%22">COVID-19 pandemic</searchLink><br /><searchLink fieldCode="DE" term="%22Well-being%22">Well-being</searchLink>
– Name: Abstract
  Label: Abstract
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  Data: Purpose: The impacts of the COVID-19 pandemic on autistic children/youth and their families and on service providers are not yet well-understood. This study explored the lived experiences of families with an autistic child and service providers who support them regarding the impacts of the pandemic on service delivery and well-being. Methods: In this qualitative study, families and service providers (e.g., early intervention staff, service providers, school personnel) supporting autistic children/youth were interviewed. Participants were recruited from a diagnostic site and two service organizations that support autistic children/youth. Results: Thirteen parents and 18 service providers participated in either an individual or group interview. Findings indicate challenges associated with pandemic restrictions and resulting service shifts. These challenges generally imposed negative experiences on the daily lives of autistic children/youth and their families, as well as on service providers. While many were adversely affected by service delivery changes, families and service agencies/providers pivoted and managed challenges. Shifts have had varied impacts, with implications to consider in pandemic planning and post-pandemic recovery. Conclusion: Results highlight the need for autism-focused supports, as well as technology and pandemic preparedness capacity building within health, therapeutic and educational sectors in order to better manage shifts in daily routines during emergencies such as a pandemic. Findings also offer instructive consideration in service delivery post-pandemic. [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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      – Type: doi
        Value: 10.1007/s10803-024-06402-6
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      – Code: eng
        Text: English
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      Pagination:
        PageCount: 12
        StartPage: 2706
    Subjects:
      – SubjectFull: Families & psychology
        Type: general
      – SubjectFull: Health services accessibility
        Type: general
      – SubjectFull: Research funding
        Type: general
      – SubjectFull: Qualitative research
        Type: general
      – SubjectFull: Autism
        Type: general
      – SubjectFull: Medical care
        Type: general
      – SubjectFull: Interviewing
        Type: general
      – SubjectFull: Pandemic preparedness
        Type: general
      – SubjectFull: Family attitudes
        Type: general
      – SubjectFull: Experience
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      – SubjectFull: Attitudes of medical personnel
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      – SubjectFull: Asperger's syndrome
        Type: general
      – SubjectFull: COVID-19 pandemic
        Type: general
      – SubjectFull: Well-being
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    Titles:
      – TitleFull: COVID-19 Pandemic Experiences of Families in Which a Child/Youth Has Autism and Their Service Providers: Perspectives and Lessons Learned.
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            NameFull: Nicholas, David B.
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            NameFull: Zulla, Rosslynn T.
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            NameFull: Cielsielski, Jill
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            NameFull: Conlon, Olivia
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            – D: 01
              M: 08
              Text: Aug2025
              Type: published
              Y: 2025
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