Inclusion of Individuals with Autism and Co-Occurring Intellectual Disability or Language Impairment as Research Participants.

Autistic individuals with higher support needs, including those with co-occurring intellectual disability (ID) and language impairment (LI), are underrepresented in research. Researchers who attempt to include this population face unique challenges regarding participant recruitment, informed consent...

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Publicado en:Journal of Autism & Developmental Disorders Vol. 55; no. 9; pp. 3410 - 3416
Autores principales: Reuben, Katherine E., Arias, Jalayne J., Self-Brown, Shannon, Vinoski Thomas, Erin
Formato: review Journal Article
Publicado: Springer Nature Sep2025
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Sep2025
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      pub: Springer Nature
      place: New York, New York
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        atl: Inclusion of Individuals with Autism and Co-Occurring Intellectual Disability or Language Impairment as Research Participants.
      aug:
        au:
          Reuben, Katherine E.
          Arias, Jalayne J.
          Self-Brown, Shannon
          Vinoski Thomas, Erin
        affil: https://ror.org/03qt6ba18 School of Public Health, Georgia State University, P.O. Box 3995, 140 Decatur St. SE, 30303, Atlanta, GA, USA
      sug:
        subj:
          Autism Spectrum Disorder Psychosocial Factors
          Intellectual Disability Psychosocial Factors
          Language Disorders Psychosocial Factors
          Comorbidity
          Research Subjects
          Patient Selection Ethical Issues
          Privacy and Confidentiality
          Health Services Accessibility
          Research, Medical
          Autism Spectrum Disorder Complications
          Research Ethics
          Conceptual Framework
          Support, Psychosocial
      ab: Autistic individuals with higher support needs, including those with co-occurring intellectual disability (ID) and language impairment (LI), are underrepresented in research. Researchers who attempt to include this population face unique challenges regarding participant recruitment, informed consent, accurate measurement, and protecting privacy and confidentiality. This leads to gaps in understanding as well as a lack of evidence-based support for clinical and public health practice. Careful consideration is needed to ensure that autism research is appropriately inclusive and does not unduly burden vulnerable populations. This commentary uses the Kass framework as an example scaffold for navigating complex ethical challenges and improving accessibility and fairness in autism research. It reviews existing literature on the topic, and the resulting recommendations are informed by autistic individuals with substantial support needs. Increased representation of the full autism spectrum in research is necessary to ensure equitable health outcomes for all autistic individuals. Ethical analysis, guidance from autism research organizations, and recommendations from autistic adults can assist with this process.
      pubtype: Academic Journal
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        review
        Journal Article
      ougenre: Article
    language: English
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