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"There is No Help:" Caregiver Perspectives on Service Needs for Adolescents and Adults with Profound Autism.

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Title: "There is No Help:" Caregiver Perspectives on Service Needs for Adolescents and Adults with Profound Autism.
Authors: Ferguson, Emily F. (AUTHOR), Barnett, Miya L. (AUTHOR), Goodwin, Jon W. (AUTHOR), Vernon, Ty W. (AUTHOR)
Source: Journal of Autism & Developmental Disorders. Oct2025, Vol. 55 Issue 10, p3460-3477. 18p.
Subjects: Treatment of autism, Health services accessibility, Pearson correlation (Statistics), Language & languages, Research funding, Income, Interviewing, Questionnaires, Logistic regression analysis, Primary health care, Descriptive statistics, Chi-squared test, Emotions, Surveys, Odds ratio, Thematic analysis, Research methodology, Psychology of caregivers, Asperger's syndrome, Medical needs assessment, Confidence intervals, Social support, Minorities, Quality assurance, Caregiver attitudes, Socialization, Social skills education, Adolescence, Adults
Geographic Terms: United States
Abstract: The underrepresentation of individuals with profound autism (who require 24/7 access to care) in autism research has resulted in limited knowledge about their service needs and a lack of evidence-based practices tailored to those needs. This study explored caregiver perspectives on service needs, barriers to accessing care, and treatment priorities to guide treatment development and improvement of service delivery. A sequential mixed-methods design integrated quantitative survey data (n = 423; Mage = 18.89 years; 26.7% female) with qualitative interviews (n = 20) with caregivers of adolescents and adults with profound autism. Quantitative findings indicated regular socialization opportunities were the most frequently endorsed unmet service need (60.3% of caregivers), followed by primary health care with autism-trained staff (59.3%), social skills instruction (55.8%), life skills instruction (51.3%), and behavioral support (47.3%). Higher likelihood of needing social activity groups was associated with elevated emotional reactivity, higher language level, minoritized ethnicity, and lower household income. Greater need for specialized primary health care was associated with lower income, while the need for social and life skills instruction was associated with increased age and elevated dysphoria. Qualitative analysis identified 10 themes that converged and expanded quantitative findings by highlighting a pervasive shortage of individualized, goal-oriented services, common barriers to care, and the priority of developing centralized treatment settings that coordinate care throughout adulthood. This study identified pressing service needs for adolescents and adults with profound autism in the United States. These insights are crucial for improving the accessibility and quality of clinical care. [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: "There is No Help:" Caregiver Perspectives on Service Needs for Adolescents and Adults with Profound Autism.
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  Data: <searchLink fieldCode="AR" term="%22Ferguson%2C+Emily+F%2E%22">Ferguson, Emily F.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Barnett%2C+Miya+L%2E%22">Barnett, Miya L.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Goodwin%2C+Jon+W%2E%22">Goodwin, Jon W.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Vernon%2C+Ty+W%2E%22">Vernon, Ty W.</searchLink> (AUTHOR)
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  Data: <searchLink fieldCode="JN" term="%22Journal+of+Autism+%26+Developmental+Disorders%22">Journal of Autism & Developmental Disorders</searchLink>. Oct2025, Vol. 55 Issue 10, p3460-3477. 18p.
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  Data: <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="%22Pearson+correlation+%28Statistics%29%22">Pearson correlation (Statistics)</searchLink><br /><searchLink fieldCode="DE" term="%22Language+%26+languages%22">Language & languages</searchLink><br /><searchLink fieldCode="DE" term="%22Research+funding%22">Research funding</searchLink><br /><searchLink fieldCode="DE" term="%22Income%22">Income</searchLink><br /><searchLink fieldCode="DE" term="%22Interviewing%22">Interviewing</searchLink><br /><searchLink fieldCode="DE" term="%22Questionnaires%22">Questionnaires</searchLink><br /><searchLink fieldCode="DE" term="%22Logistic+regression+analysis%22">Logistic regression analysis</searchLink><br /><searchLink fieldCode="DE" term="%22Primary+health+care%22">Primary health care</searchLink><br /><searchLink fieldCode="DE" term="%22Descriptive+statistics%22">Descriptive statistics</searchLink><br /><searchLink fieldCode="DE" term="%22Chi-squared+test%22">Chi-squared test</searchLink><br /><searchLink fieldCode="DE" term="%22Emotions%22">Emotions</searchLink><br /><searchLink fieldCode="DE" term="%22Surveys%22">Surveys</searchLink><br /><searchLink fieldCode="DE" term="%22Odds+ratio%22">Odds ratio</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="%22Psychology+of+caregivers%22">Psychology of caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Asperger's+syndrome%22">Asperger's syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22Medical+needs+assessment%22">Medical needs assessment</searchLink><br /><searchLink fieldCode="DE" term="%22Confidence+intervals%22">Confidence intervals</searchLink><br /><searchLink fieldCode="DE" term="%22Social+support%22">Social support</searchLink><br /><searchLink fieldCode="DE" term="%22Minorities%22">Minorities</searchLink><br /><searchLink fieldCode="DE" term="%22Quality+assurance%22">Quality assurance</searchLink><br /><searchLink fieldCode="DE" term="%22Caregiver+attitudes%22">Caregiver attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Socialization%22">Socialization</searchLink><br /><searchLink fieldCode="DE" term="%22Social+skills+education%22">Social skills education</searchLink><br /><searchLink fieldCode="DE" term="%22Adolescence%22">Adolescence</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink>
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  Data: <searchLink fieldCode="DE" term="%22United+States%22">United States</searchLink>
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  Label: Abstract
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  Data: The underrepresentation of individuals with profound autism (who require 24/7 access to care) in autism research has resulted in limited knowledge about their service needs and a lack of evidence-based practices tailored to those needs. This study explored caregiver perspectives on service needs, barriers to accessing care, and treatment priorities to guide treatment development and improvement of service delivery. A sequential mixed-methods design integrated quantitative survey data (n = 423; Mage = 18.89 years; 26.7% female) with qualitative interviews (n = 20) with caregivers of adolescents and adults with profound autism. Quantitative findings indicated regular socialization opportunities were the most frequently endorsed unmet service need (60.3% of caregivers), followed by primary health care with autism-trained staff (59.3%), social skills instruction (55.8%), life skills instruction (51.3%), and behavioral support (47.3%). Higher likelihood of needing social activity groups was associated with elevated emotional reactivity, higher language level, minoritized ethnicity, and lower household income. Greater need for specialized primary health care was associated with lower income, while the need for social and life skills instruction was associated with increased age and elevated dysphoria. Qualitative analysis identified 10 themes that converged and expanded quantitative findings by highlighting a pervasive shortage of individualized, goal-oriented services, common barriers to care, and the priority of developing centralized treatment settings that coordinate care throughout adulthood. This study identified pressing service needs for adolescents and adults with profound autism in the United States. These insights are crucial for improving the accessibility and quality of clinical care. [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.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=pbh&AN=188317749
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1007/s10803-024-06451-x
    Languages:
      – Code: eng
        Text: English
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        PageCount: 18
        StartPage: 3460
    Subjects:
      – SubjectFull: Treatment of autism
        Type: general
      – SubjectFull: Health services accessibility
        Type: general
      – SubjectFull: Pearson correlation (Statistics)
        Type: general
      – SubjectFull: Language & languages
        Type: general
      – SubjectFull: Research funding
        Type: general
      – SubjectFull: Income
        Type: general
      – SubjectFull: Interviewing
        Type: general
      – SubjectFull: Questionnaires
        Type: general
      – SubjectFull: Logistic regression analysis
        Type: general
      – SubjectFull: Primary health care
        Type: general
      – SubjectFull: Descriptive statistics
        Type: general
      – SubjectFull: Chi-squared test
        Type: general
      – SubjectFull: Emotions
        Type: general
      – SubjectFull: Surveys
        Type: general
      – SubjectFull: Odds ratio
        Type: general
      – SubjectFull: Thematic analysis
        Type: general
      – SubjectFull: Research methodology
        Type: general
      – SubjectFull: Psychology of caregivers
        Type: general
      – SubjectFull: Asperger's syndrome
        Type: general
      – SubjectFull: Medical needs assessment
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      – SubjectFull: Confidence intervals
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      – SubjectFull: Social support
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      – SubjectFull: Minorities
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      – SubjectFull: Quality assurance
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      – SubjectFull: Caregiver attitudes
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      – SubjectFull: Socialization
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      – SubjectFull: Social skills education
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      – SubjectFull: Adolescence
        Type: general
      – SubjectFull: Adults
        Type: general
      – SubjectFull: United States
        Type: general
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      – TitleFull: "There is No Help:" Caregiver Perspectives on Service Needs for Adolescents and Adults with Profound Autism.
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              Text: Oct2025
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