A Community-Based Approach to Longitudinal Language Research With Racially and Ethnically Minoritized Autistic Young Adults: Lessons Learned and New Directions.
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| Title: | A Community-Based Approach to Longitudinal Language Research With Racially and Ethnically Minoritized Autistic Young Adults: Lessons Learned and New Directions. |
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| Authors: | Girolamo, Teresa1,2 teresa.girolamo@uconn.edu, Ghali, Samantha3, Eigsti, Inge-Marie1,2 |
| Source: | American Journal of Speech-Language Pathology. May2023, Vol. 32 Issue 3, p977-988. 12p. 2 Diagrams. |
| Subject Terms: | *Language & languages, *Community health services, *Autism, *Longitudinal method, *Language disorders, Social determinants of health, Human research subjects, Patient selection, Race, Informed consent (Medical law), Trust |
| Abstract: | Purpose: Language and autism research each typically excludes racially and ethnically minoritized (REM) autistic individuals. In addition, in the case of autistic individuals with language impairment, investigators often approach caregivers to discuss research participation, rather than autistic individuals themselves. This gap limits the ecological validity of language research in autism. To address this gap, this clinical focus article describes strategies for engaging REM autistic young adults with language impairment using lessons learned from 5 years of longitudinal research with this population. This approach involved an ongoing community partnership, as well as participatory partnerships with REM autistic individuals and community stakeholders, consistent with a “slow science” approach. Conclusions: The approach yielded excellent retention of participants over 5 years and led to co-development of research projects aimed at priorities described by REM autistic individuals and their families, including understanding self-determination, social determinants of health, and language variability in autistic REM individuals with language impairment. Findings support the utility of community-based methods with autistic REM young adults with language impairment, with key takeaways for diversifying research while replicating, extending, and building theory. [ABSTRACT FROM AUTHOR] |
| Copyright of American Journal of Speech-Language Pathology is the property of American Speech-Language-Hearing Association 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: | Education Research Complete |
| FullText | Links: – Type: pdflink Text: Availability: 0 |
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| Header | DbId: ehh DbLabel: Education Research Complete An: 163618338 AccessLevel: 6 PubType: Academic Journal PubTypeId: academicJournal PreciseRelevancyScore: 0 |
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| Items | – Name: Title Label: Title Group: Ti Data: A Community-Based Approach to Longitudinal Language Research With Racially and Ethnically Minoritized Autistic Young Adults: Lessons Learned and New Directions. – Name: Author Label: Authors Group: Au Data: <searchLink fieldCode="AR" term="%22Girolamo%2C+Teresa%22">Girolamo, Teresa</searchLink><relatesTo>1,2</relatesTo><i> teresa.girolamo@uconn.edu</i><br /><searchLink fieldCode="AR" term="%22Ghali%2C+Samantha%22">Ghali, Samantha</searchLink><relatesTo>3</relatesTo><br /><searchLink fieldCode="AR" term="%22Eigsti%2C+Inge-Marie%22">Eigsti, Inge-Marie</searchLink><relatesTo>1,2</relatesTo> – Name: TitleSource Label: Source Group: Src Data: <searchLink fieldCode="JN" term="%22American+Journal+of+Speech-Language+Pathology%22">American Journal of Speech-Language Pathology</searchLink>. May2023, Vol. 32 Issue 3, p977-988. 12p. 2 Diagrams. – Name: Subject Label: Subject Terms Group: Su Data: *<searchLink fieldCode="DE" term="%22Language+%26+languages%22">Language & languages</searchLink><br />*<searchLink fieldCode="DE" term="%22Community+health+services%22">Community health services</searchLink><br />*<searchLink fieldCode="DE" term="%22Autism%22">Autism</searchLink><br />*<searchLink fieldCode="DE" term="%22Longitudinal+method%22">Longitudinal method</searchLink><br />*<searchLink fieldCode="DE" term="%22Language+disorders%22">Language disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Social+determinants+of+health%22">Social determinants of health</searchLink><br /><searchLink fieldCode="DE" term="%22Human+research+subjects%22">Human research subjects</searchLink><br /><searchLink fieldCode="DE" term="%22Patient+selection%22">Patient selection</searchLink><br /><searchLink fieldCode="DE" term="%22Race%22">Race</searchLink><br /><searchLink fieldCode="DE" term="%22Informed+consent+%28Medical+law%29%22">Informed consent (Medical law)</searchLink><br /><searchLink fieldCode="DE" term="%22Trust%22">Trust</searchLink> – Name: Abstract Label: Abstract Group: Ab Data: Purpose: Language and autism research each typically excludes racially and ethnically minoritized (REM) autistic individuals. In addition, in the case of autistic individuals with language impairment, investigators often approach caregivers to discuss research participation, rather than autistic individuals themselves. This gap limits the ecological validity of language research in autism. To address this gap, this clinical focus article describes strategies for engaging REM autistic young adults with language impairment using lessons learned from 5 years of longitudinal research with this population. This approach involved an ongoing community partnership, as well as participatory partnerships with REM autistic individuals and community stakeholders, consistent with a “slow science” approach. Conclusions: The approach yielded excellent retention of participants over 5 years and led to co-development of research projects aimed at priorities described by REM autistic individuals and their families, including understanding self-determination, social determinants of health, and language variability in autistic REM individuals with language impairment. Findings support the utility of community-based methods with autistic REM young adults with language impairment, with key takeaways for diversifying research while replicating, extending, and building theory. [ABSTRACT FROM AUTHOR] – Name: AbstractSuppliedCopyright Label: Group: Ab Data: <i>Copyright of American Journal of Speech-Language Pathology is the property of American Speech-Language-Hearing Association 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: BibEntity: Identifiers: – Type: doi Value: 10.1044/2023_AJSLP-22-00341 Languages: – Code: eng Text: English PhysicalDescription: Pagination: PageCount: 12 StartPage: 977 Subjects: – SubjectFull: Language & languages Type: general – SubjectFull: Community health services Type: general – SubjectFull: Autism Type: general – SubjectFull: Longitudinal method Type: general – SubjectFull: Language disorders Type: general – SubjectFull: Social determinants of health Type: general – SubjectFull: Human research subjects Type: general – SubjectFull: Patient selection Type: general – SubjectFull: Race Type: general – SubjectFull: Informed consent (Medical law) Type: general – SubjectFull: Trust Type: general Titles: – TitleFull: A Community-Based Approach to Longitudinal Language Research With Racially and Ethnically Minoritized Autistic Young Adults: Lessons Learned and New Directions. Type: main BibRelationships: HasContributorRelationships: – PersonEntity: Name: NameFull: Girolamo, Teresa – PersonEntity: Name: NameFull: Ghali, Samantha – PersonEntity: Name: NameFull: Eigsti, Inge-Marie IsPartOfRelationships: – BibEntity: Dates: – D: 01 M: 05 Text: May2023 Type: published Y: 2023 Identifiers: – Type: issn-print Value: 10580360 Numbering: – Type: volume Value: 32 – Type: issue Value: 3 Titles: – TitleFull: American Journal of Speech-Language Pathology Type: main |
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