Evidence map›Paper›PMID 38469707›Full record

ArticleAutism : the international journal of research and practice2024

"I'm dealing with a health care system that doesn't get it": Barriers and facilitators to inclusive healthcare for autistic adults.

Kiley J McLean, Meghan Haas, Jamie Koenig, Megan Horvath, Mariah Vigil, Nicole E Werner, Lauren Bishop

Abstract read
In one paragraph

Article in Autism : the international journal of research and practice, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

8 citing papers in PubMed.

  1. Article
  2. Review
  3. Challenging neurotypical norms: Autistic adults' understandings of health.Autism : the international journal of research and practice · 2025
    Article
  4. Article
  5. Article
  6. Article
  7. Article
  8. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

Kiley J McLeanA.J. Drexel Autism Institute, USA.ORCID 0000-0003-2196-5920
Meghan HaasSandra Rosenbaum School of Social Work University of Wisconsin-Madison, USA.
Jamie KoenigSandra Rosenbaum School of Social Work University of Wisconsin-Madison, USA.
Megan HorvathSandra Rosenbaum School of Social Work University of Wisconsin-Madison, USA.
Mariah VigilSandra Rosenbaum School of Social Work University of Wisconsin-Madison, USA.
Nicole E WernerDepartment of Health and Wellness Design, Indiana University Bloomington, USA.
Lauren BishopSandra Rosenbaum School of Social Work University of Wisconsin-Madison, USA.ORCID 0000-0003-1269-4129

Funding

University of Wisconsin Institute for Clinical and Translational ResearchUL1TR002373 · NCATS · UNIVERSITY OF WISCONSIN-MADISON · PI ELIZABETH S BURNSIDE, Allan R. Brasier · 2017 to 2026
$75.9M
Institutional Career Development CoreKL2TR002374 · NCATS · UNIVERSITY OF WISCONSIN-MADISON · PI Bo Liu, Marin Leigh Schweizer · 2017 to 2026
$9.7M
Waisman Center Intellectual and Developmental Disabilities Research CenterP50HD105353 · NICHD · UNIVERSITY OF WISCONSIN-MADISON · PI Qiang Chang · 2021 to 2026
$8.5M
Toward Healthy Aging in Adults with Autism: A Longitudinal Clinical and Multimodal Brain Imaging StudyR01MH132218 · NIMH · UNIVERSITY OF WISCONSIN-MADISON · PI ALEXANDER, ANDREW L, LAINHART, JANET ELIZABETH · 2022 to 2024
$6.9M
Institutional Clinical and Translational Science AwardKL2TR000428 · NCATS · UNIVERSITY OF WISCONSIN-MADISON · PI DREZNER, MARC KENNETH · 2012 to 2016
$6.2M
Waisman Intellectual and Developmental Disabilities Research Center Down Syndrome RegistryU54HD090256 · NICHD · UNIVERSITY OF WISCONSIN-MADISON · PI SVAREN, JOHN P · 2016 to 2020
$6.0M
NCATS NIH HHS KL2 TR000428NCATS NIH HHS KL2 TR002374NCATS NIH HHS UL1 TR002373NICHD NIH HHS P50 HD105353NICHD NIH HHS U54 HD090256NIMH NIH HHS R01 MH132218
6 · The paper itself

Abstract

lay abstractResearch has suggested that autistic adults may have a bigger chance of having mental health and physical health conditions such as depression, anxiety, sleep disorders, diabetes, obesity, and heart problems than adults without autism. Unfortunately, the unique healthcare needs of autistic adults are often overlooked, so it is not clear why autistic adults have worse health or what can be done to improve it. This study wants to find out the challenges autistic adults experience in taking care of their health and in going to different doctors. Researchers interviewed autistic adults across the country about their healthcare experiences. The interviewed autistic adults told the researchers about the barriers (things that did not help) and facilitators (things that did help) that impacted whether they received the care they needed. The researchers then organized what they learned from the autistic adults into a model called the Systems Engineering Initiative for Patient Safety model of work system and patient safety. This model explains how different parts of a healthcare system (person, tasks, technology and tools, environment, and organization) interact with one another and impact the healthcare experiences and outcomes of the patients in their care, like autistic adults. Overall, this study advocates for a systems-level approach to improving the healthcare experiences of autistic adults and their health outcomes.

Indexed as

Autistic DisorderHealth Services AccessibilityAdultDelivery of Health CareFemaleHumansMaleMiddle AgedPatient SafetyYoung Adultadultsautism spectrum disordershealth servicesqualitative research

Identifiers

PMID38469707
PMCPMC11132937

What OpenQuestion holds

Textmetadata
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Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.