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From awareness to action: Facilitators and advocacy in healthcare by autistic adults.

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Title: From awareness to action: Facilitators and advocacy in healthcare by autistic adults.
Authors: Best, Megan1 mebest2@illinois.edu, Lindsay, RaeAnne2, Demissie, Sarah2, Burakov, Isabelle2, Ramos-Torres, Saury3, Burke, Meghan2
Source: Autism: The International Journal of Research & Practice. Oct2025, Vol. 29 Issue 10, p2513-2523. 11p.
Subject Terms: *Health services accessibility, *Community support, *Qualitative research, *Autism, *Theory of knowledge, *Research methodology, *Asperger's syndrome, *Adults, Social constructionism, Research funding, Interviewing, Questionnaires, Descriptive statistics, Judgment sampling, Thematic analysis, Professions, Trust, Self advocacy, Medical needs assessment, Social support, Patients' attitudes
Geographic Terms: United States
Abstract: Autistic adults face various psychological and physical health conditions which often require ongoing medical attention. Despite a greater likelihood of health conditions, autistic adults face many systemic barriers in accessing healthcare services. It is important to identify facilitators to healthcare access and recognize the impact of self-advocacy on these experiences. In this qualitative study, we interviewed 15 autistic participants to understand their experienced and desired facilitators when accessing healthcare services, as well as the role of self-advocacy in accessing these services. Overall, participants agreed that formal and informal supports, provider knowledge about autism, and provider openness to providing accommodations served as facilitators. Participants also shared about their experiences related to self-advocacy and accessing healthcare services such as examples of self-advocacy in healthcare, learning to be a self-advocate, and facilitators of self-advocacy. Implications for research and practice are discussed. Autistic adults often have both mental and physical health needs that require ongoing care. However, they often face obstacles when trying to get healthcare. This study aimed to find out what helps autistic adults get the healthcare they need and how self-advocacy, or speaking up for themselves, plays a role. We talked to 15 autistic individuals about their experiences and what they wished for when accessing healthcare. Participants mentioned that support from others, doctors' knowledge about autism, and doctors being willing to make changes as needed per patient need were helpful. They also shared how self-advocacy impacted their healthcare experiences, including examples of how they advocated for themselves and what helped them do so. The study offers insights that could inform future research and healthcare practices. [ABSTRACT FROM AUTHOR]
Copyright of Autism: The International Journal of Research & Practice is the property of Sage Publications Inc. 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
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  Data: From awareness to action: Facilitators and advocacy in healthcare by autistic adults.
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  Data: <searchLink fieldCode="AR" term="%22Best%2C+Megan%22">Best, Megan</searchLink><relatesTo>1</relatesTo><i> mebest2@illinois.edu</i><br /><searchLink fieldCode="AR" term="%22Lindsay%2C+RaeAnne%22">Lindsay, RaeAnne</searchLink><relatesTo>2</relatesTo><br /><searchLink fieldCode="AR" term="%22Demissie%2C+Sarah%22">Demissie, Sarah</searchLink><relatesTo>2</relatesTo><br /><searchLink fieldCode="AR" term="%22Burakov%2C+Isabelle%22">Burakov, Isabelle</searchLink><relatesTo>2</relatesTo><br /><searchLink fieldCode="AR" term="%22Ramos-Torres%2C+Saury%22">Ramos-Torres, Saury</searchLink><relatesTo>3</relatesTo><br /><searchLink fieldCode="AR" term="%22Burke%2C+Meghan%22">Burke, Meghan</searchLink><relatesTo>2</relatesTo>
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  Data: <searchLink fieldCode="JN" term="%22Autism%3A+The+International+Journal+of+Research+%26+Practice%22">Autism: The International Journal of Research & Practice</searchLink>. Oct2025, Vol. 29 Issue 10, p2513-2523. 11p.
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  Data: *<searchLink fieldCode="DE" term="%22Health+services+accessibility%22">Health services accessibility</searchLink><br />*<searchLink fieldCode="DE" term="%22Community+support%22">Community support</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="%22Theory+of+knowledge%22">Theory of knowledge</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="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Social+constructionism%22">Social constructionism</searchLink><br /><searchLink fieldCode="DE" term="%22Research+funding%22">Research funding</searchLink><br /><searchLink fieldCode="DE" term="%22Interviewing%22">Interviewing</searchLink><br /><searchLink fieldCode="DE" term="%22Questionnaires%22">Questionnaires</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="%22Professions%22">Professions</searchLink><br /><searchLink fieldCode="DE" term="%22Trust%22">Trust</searchLink><br /><searchLink fieldCode="DE" term="%22Self+advocacy%22">Self advocacy</searchLink><br /><searchLink fieldCode="DE" term="%22Medical+needs+assessment%22">Medical needs assessment</searchLink><br /><searchLink fieldCode="DE" term="%22Social+support%22">Social support</searchLink><br /><searchLink fieldCode="DE" term="%22Patients'+attitudes%22">Patients' attitudes</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: Autistic adults face various psychological and physical health conditions which often require ongoing medical attention. Despite a greater likelihood of health conditions, autistic adults face many systemic barriers in accessing healthcare services. It is important to identify facilitators to healthcare access and recognize the impact of self-advocacy on these experiences. In this qualitative study, we interviewed 15 autistic participants to understand their experienced and desired facilitators when accessing healthcare services, as well as the role of self-advocacy in accessing these services. Overall, participants agreed that formal and informal supports, provider knowledge about autism, and provider openness to providing accommodations served as facilitators. Participants also shared about their experiences related to self-advocacy and accessing healthcare services such as examples of self-advocacy in healthcare, learning to be a self-advocate, and facilitators of self-advocacy. Implications for research and practice are discussed. Autistic adults often have both mental and physical health needs that require ongoing care. However, they often face obstacles when trying to get healthcare. This study aimed to find out what helps autistic adults get the healthcare they need and how self-advocacy, or speaking up for themselves, plays a role. We talked to 15 autistic individuals about their experiences and what they wished for when accessing healthcare. Participants mentioned that support from others, doctors' knowledge about autism, and doctors being willing to make changes as needed per patient need were helpful. They also shared how self-advocacy impacted their healthcare experiences, including examples of how they advocated for themselves and what helped them do so. The study offers insights that could inform future research and healthcare practices. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Autism: The International Journal of Research & Practice is the property of Sage Publications Inc. 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=ehh&AN=187842547
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        Value: 10.1177/13623613251343350
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      – Code: eng
        Text: English
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      – SubjectFull: Health services accessibility
        Type: general
      – SubjectFull: Community support
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      – SubjectFull: Qualitative research
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      – SubjectFull: Autism
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      – SubjectFull: Theory of knowledge
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      – SubjectFull: Research methodology
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      – SubjectFull: Asperger's syndrome
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      – SubjectFull: Adults
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      – SubjectFull: Descriptive statistics
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      – SubjectFull: Judgment sampling
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      – SubjectFull: Thematic analysis
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      – SubjectFull: Professions
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      – SubjectFull: United States
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      – TitleFull: From awareness to action: Facilitators and advocacy in healthcare by autistic adults.
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              M: 10
              Text: Oct2025
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