Literature DB >> 25882392

"Respect the way I need to communicate with you": Healthcare experiences of adults on the autism spectrum.

Christina Nicolaidis1, Dora M Raymaker2, Elesia Ashkenazy3, Katherine E McDonald4, Sebastian Dern3, Amelia Ev Baggs3, Steven K Kapp3, Michael Weiner5, W Cody Boisclair3.   

Abstract

Our objective was to obtain an in-depth understanding of autistic adults' experiences with healthcare and their recommendations for improving care. Our academic-community partnership used a community-based participatory research approach to conduct semi-structured, open-ended interviews with 39 autistic adults and 16 people who had experience supporting autistic adults in healthcare settings. Participants identified patient-level, autism-related factors that impact healthcare interactions, including verbal communication skills, sensory sensitivities, challenges with body awareness, slow processing speed, atypical non-verbal communication, and challenges with organization. However, the success of healthcare interactions largely depended on the interplay between patient- and provider-level factors, as well as the larger context in which patients were receiving care. Provider-level factors included providers' knowledge about autism in adults, incorrect assumptions about individual patients, willingness to allow written communication, use of accessible language, openness to providing other accommodations, and skill in appropriately incorporating supporters. System-level factors included the availability of supporters, complexity of the healthcare system, accessibility of healthcare facilities, and stigma about autism. Further efforts are needed to empower patients, adequately train providers, increase the accessibility of the healthcare system, and decrease discrimination.
© The Author(s) 2015.

Entities:  

Keywords:  adults; autism spectrum disorders; community-based participatory research; health services; qualitative research

Mesh:

Year:  2015        PMID: 25882392      PMCID: PMC4841263          DOI: 10.1177/1362361315576221

Source DB:  PubMed          Journal:  Autism        ISSN: 1362-3613


  16 in total

Review 1.  A cascade of disparities: health and health care access for people with intellectual disabilities.

Authors:  Gloria L Krahn; Laura Hammond; Anne Turner
Journal:  Ment Retard Dev Disabil Res Rev       Date:  2006

2.  Brief report: the medical care of adults with autism spectrum disorders: identifying the needs.

Authors:  Mary Beth Bruder; Gerard Kerins; Cynthia Mazzarella; Jessica Sims; Neil Stein
Journal:  J Autism Dev Disord       Date:  2012-11

3.  Supporting the health care transition from adolescence to adulthood in the medical home.

Authors:  W Carl Cooley; Paul J Sagerman
Journal:  Pediatrics       Date:  2011-06-27       Impact factor: 7.124

4.  Collaboration strategies in nontraditional community-based participatory research partnerships: lessons from an academic−community partnership with autistic self-advocates.

Authors:  Christina Nicolaidis; Dora Raymaker; Katherine McDonald; Sebastian Dern; Elesia Ashkenazy; Cody Boisclair; Scott Robertson; Amanda Baggs
Journal:  Prog Community Health Partnersh       Date:  2011

5.  Epidemiology of autism spectrum disorders in adults in the community in England.

Authors:  Traolach S Brugha; Sally McManus; John Bankart; Fiona Scott; Susan Purdon; Jane Smith; Paul Bebbington; Rachel Jenkins; Howard Meltzer
Journal:  Arch Gen Psychiatry       Date:  2011-05

6.  A nationwide survey of patient centered medical home demonstration projects.

Authors:  Asaf Bitton; Carina Martin; Bruce E Landon
Journal:  J Gen Intern Med       Date:  2010-06       Impact factor: 5.128

Review 7.  The state of research on racial/ethnic discrimination in the receipt of health care.

Authors:  Vickie L Shavers; Pebbles Fagan; Dionne Jones; William M P Klein; Josephine Boyington; Carmen Moten; Edward Rorie
Journal:  Am J Public Health       Date:  2012-05       Impact factor: 9.308

8.  Comparison of healthcare experiences in autistic and non-autistic adults: a cross-sectional online survey facilitated by an academic-community partnership.

Authors:  Christina Nicolaidis; Dora Raymaker; Katherine McDonald; Sebastian Dern; W Cody Boisclair; Elesia Ashkenazy; Amanda Baggs
Journal:  J Gen Intern Med       Date:  2012-11-21       Impact factor: 5.128

9.  The autism-spectrum quotient (AQ): evidence from Asperger syndrome/high-functioning autism, males and females, scientists and mathematicians.

Authors:  S Baron-Cohen; S Wheelwright; R Skinner; J Martin; E Clubley
Journal:  J Autism Dev Disord       Date:  2001-02

10.  Transitions of care from Child and Adolescent Mental Health Services to Adult Mental Health Services (TRACK Study): a study of protocols in Greater London.

Authors:  Swaran P Singh; Moli Paul; Tamsin Ford; Tami Kramer; Tim Weaver
Journal:  BMC Health Serv Res       Date:  2008-06-23       Impact factor: 2.655

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  72 in total

1.  The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants.

Authors:  Christina Nicolaidis; Dora Raymaker; Steven K Kapp; Amelia Baggs; E Ashkenazy; Katherine McDonald; Michael Weiner; Joelle Maslak; Morrigan Hunter; Andrea Joyce
Journal:  Autism       Date:  2019-04-03

2.  The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers.

Authors:  Christina Nicolaidis; Dora Raymaker; Katherine McDonald; Steven Kapp; Michael Weiner; Elesia Ashkenazy; Martha Gerrity; Clarissa Kripke; Laura Platt; Amelia Baggs
Journal:  J Gen Intern Med       Date:  2016-06-06       Impact factor: 5.128

Review 3.  Primary care for adults on the autism spectrum.

Authors:  Christina Nicolaidis; Clarissa Calliope Kripke; Dora Raymaker
Journal:  Med Clin North Am       Date:  2014-09       Impact factor: 5.456

4.  Towards an Agenda for Research for Lesbian, Gay, Bisexual, Transgendered and/or Intersexed People with an Autism Spectrum Diagnosis.

Authors:  Matthew Bennett; Emma Goodall
Journal:  J Autism Dev Disord       Date:  2016-09

5.  Specialized primary care medical home: A positive impact on continuity of care among autistic adults.

Authors:  Brittany N Hand; Daniel L Coury; Susan White; Amy R Darragh; Susan Moffatt-Bruce; Lauren Harris; Anne Longo; Jennifer H Garvin
Journal:  Autism       Date:  2020-09-09

6.  Brief Report: Factors Influencing Healthcare Satisfaction in Adults with Autism Spectrum Disorder.

Authors:  Alan H Gerber; Carolyn E B McCormick; Todd P Levine; Eric M Morrow; Thomas F Anders; Stephen J Sheinkopf
Journal:  J Autism Dev Disord       Date:  2017-06

7.  GPs' confidence in caring for their patients on the autism spectrum: an online self-report study.

Authors:  Silvana Unigwe; Carole Buckley; Laura Crane; Lorcan Kenny; Anna Remington; Elizabeth Pellicano
Journal:  Br J Gen Pract       Date:  2017-05-08       Impact factor: 5.386

8.  Brief Report: Autism in the Courtroom: Experiences of Legal Professionals and the Autism Community.

Authors:  Katie L Maras; Laura Crane; Sue Mulcahy; Tamsyn Hawken; Penny Cooper; David Wurtzel; Amina Memon
Journal:  J Autism Dev Disord       Date:  2017-08

9.  Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities.

Authors:  Dora M Raymaker; Katherine E McDonald; Elesia Ashkenazy; Martha Gerrity; Amelia M Baggs; Clarissa Kripke; Sarah Hourston; Christina Nicolaidis
Journal:  Autism       Date:  2016-09-22

10.  A Study of Physician Knowledge and Experience with Autism in Adults in a Large Integrated Healthcare System.

Authors:  Ousseny Zerbo; Maria L Massolo; Yinge Qian; Lisa A Croen
Journal:  J Autism Dev Disord       Date:  2015-12
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