BACKGROUND: Most community-based participatory research (CBPR) projects involve local communities defined by race, ethnicity, geography, or occupation. Autistic self-advocates, a geographically dispersed community defined by disability, experience issues in research similar to those expressed by more traditional minorities. OBJECTIVES: We sought to build an academic-community partnership that uses CBPR to improve the lives of people on the autistic spectrum. METHODS: The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) includes representatives from academic, self-advocate, family, and professional communities. We are currently conducting several studies about the health care experiences and well-being of autistic adults. LESSONS LEARNED: We have learned a number of strategies that integrate technology and process to successfully equalize power and accommodate diverse communication and collaboration needs. CONCLUSIONS: CBPR can be conducted successfully with autistic self-advocates. Our strategies may be useful to other CBPR partnerships, especially ones that cannot meet in person or that include people with diverse communication needs.
BACKGROUND: Most community-based participatory research (CBPR) projects involve local communities defined by race, ethnicity, geography, or occupation. Autistic self-advocates, a geographically dispersed community defined by disability, experience issues in research similar to those expressed by more traditional minorities. OBJECTIVES: We sought to build an academic-community partnership that uses CBPR to improve the lives of people on the autistic spectrum. METHODS: The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) includes representatives from academic, self-advocate, family, and professional communities. We are currently conducting several studies about the health care experiences and well-being of autistic adults. LESSONS LEARNED: We have learned a number of strategies that integrate technology and process to successfully equalize power and accommodate diverse communication and collaboration needs. CONCLUSIONS: CBPR can be conducted successfully with autistic self-advocates. Our strategies may be useful to other CBPR partnerships, especially ones that cannot meet in person or that include people with diverse communication needs.
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
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Authors: Christina Nicolaidis; Dora M Raymaker; Elesia Ashkenazy; Katherine E McDonald; Sebastian Dern; Amelia Ev Baggs; Steven K Kapp; Michael Weiner; W Cody Boisclair Journal: Autism Date: 2015-04-16
Authors: Laura Wagner; MaryKate Frisch; Lauren Turner-Brown; Sara Andrews; Anne Edwards; Rebecca Moultrie; Alexandra Alvarez Rivas; Anne Wheeler; Melissa Raspa Journal: Disabil Health J Date: 2020-04-08 Impact factor: 2.554
Authors: Dora M Raymaker; Tamara Sale; Mariam Rija; Nicholas Buekea; Nybelle Caruso; Ryan Melton; Natalie Cohrs; Veronica Gould; Christina Wall; Mirah Scharer Journal: Prog Community Health Partnersh Date: 2020
Authors: Susan Goold; Zachary Rowe; Karen Calhoun; Terrance Campbell; Marion Danis; Adnan Hammad; Cengiz Salman; Lisa Szymecko; Chris Coombe Journal: Prog Community Health Partnersh Date: 2016
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