AASPIRE received a new $690,000 grant to integrate the AASPIRE Healthcare Toolkit into three different healthcare systems (1R34MH111536).
AASPIRE has received two grants to begin research into autism and skilled employment. In August we received a BUILD EXITO pilot grant from Portland State University. In December we received a grant from the National Institute of Mental Health (1R21MH112038-01). Under these grants, we will collect pilot data and design an intervention plan to improve professional employment outcomes for autistic people.
Our paper, Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities was published in Autism.
Dora Raymaker gave a talk about AASPIRE’s work with the healthcare toolkit in helping to improve health outcomes for autistic people to Autism-Europe’s 11th International Congress.
Christina Nicolaidis gives keynote on “Collaboration Strategies in Participatory Research: AASPIRE and Other Examples” to the ESRC Research Seminar Series: Shaping Autism Research in UK. London, England.
Christina Nicolaidis gives keynote address on “Collaboration Strategies for Participatory Research Partnerships in Autism and Other Neurodevelopmental Disabilities” at the 3rd Biennial Winter Institute in Banff, Canada, sponsored by the Autism Research Training Program and NeuroDevNet.
2015 – December
Presentations at TASH
Dora Raymaker, Christina Nicolaidis, and Elesia Ashkenazy gave three presentations at the TASH annual conference in Portland, OR. One presentation was on the AASPIRE Healthcare Toolkit, another on inclusive research methods, and a third on AASPIRE and the Partnering project as part of a larger symposium on inclusiver research at Portland State University.
2015 – September
New paper and podcast on measurement adaptation
Our paper about measurement adaptation with the Partnering project was published by Progress in Community Health Partnernerships. The journal also did a podcast with Dora and Christina about the paper.
2015 – May
Paper on healthcare interviews published in Autism
Our paper about the interview study that informed the toolkit was published by Autism: The International Journal of Research and Practice, in a special issue on adults. Download the interview paper (PDF, ~233Kb).
2015 – May
Keynote includes discussion of AASPIRE’s work
AASPIRE Co-Director Christina Nicolaidis gave a keynote at the 4th Annual Primary Care Research Symposium at Saint Louis University, St. Louis MI. The keynote, titled “The doctor is in – and now mostly out: partnering with marginalized communities in and out of the healthcare system” included discussion of AASPIRE’s work.
2015 – March
Ne’eman and Nicolaidis give webinar on primary care across the lifespan
Christina Nicolaidis and Ari Ne’eman presented a webinar on “Primary Care Across the Lifespan for Autistic Children and Adults“ for medical practice providers. The webinar was hosted by Amerigroup.
2015 – January
Article on Healthcare Toolkit in Oregonian
An article about the AASPIRE Healthcare Toolkit was published in the Oregonian online. Read the article: Portland duo tries to make the world of medicine less daunting for adults with autism.
2015 – February
Raymaker passes dissertation defense
AASPIRE Co-Director Dora Raymaker passed her dissertation defense in February, 2015, and received her Doctorate of Philosophy in Systems Science Winter term 2015.
2014 – November
Autism Healthcare Accommodations Tool (AHAT) available to the public
We added the public version of the AHAT to the AASPIRE Healthcare Toolkit at www.autismandhealth.org/ahat. The AHAT lets autistic adults and supporters create a customized accommodations report for healthcare providers.
2014 – 19 August
Primary Care for Adults on the Autism Spectrum published
A paper on Primary Care for Adults on the Autism Spectrum, which includes material developed by AASPIRE, has been published in Medical Clinics of North America. A PDF of the paper is available.
2014 – 8 May
AASPIRE Healthcare Tookit Web Site Launched
The AASPIRE Healthcare Toolkit web site is available at www.autismandhealth.org
The Autism Healthcare Accommodations Report (AHAT) that creates a customized report for individuals to give to their healthcare providers will be available on this site in late 2014.
2014 – 13 March
Presentation and Thank You for OCASD
We gave a presentation on the AASPIRE Healthcare Toolkit to the Oregon Commission on ASD. The Commission has been very helpful and supportive to us during the course of the project.
2014 – March
Healthcare Toolkit Study 3 Data Collection Completed
We’ve completed data collection for the Healthcare Toolkit Study 3. Many thanks to our particpants for their time. We will post a link to the public version of the toolkit web site soon, as well as post about publications from the project.
2014 – 28 February
AASPIRE Talk at Research to Action: Social Determinants of Health
AASPIRE was the topic of one of the talks given at Portland State University’s Social Determinants of Health Research to Action Symposium in Portland, Oregon. Information about the symposium and slides for all the talks can be found on the symposium web site.
2014 – January
Paper on ACASI Program Published
We’ve published our first paper about the computer program we used to conduct the Partnering study. The paper is called “Development of an audio-computer assisted self-interview to investigate violence and health in the lives of adults with developmental disabilities”. See Disability and Health Journal for an electronic copy.
2013 – Fall
Critical Autism Studies Book Published
The book generated from the 2010 Critical Autism Studies workshop hosted by Michael Orsini and Joyce Davidson is now available. The book includes a chapter by Dora and Christina entitled “Participatory research with autistic communities: Shifting the system.” See the publisher’s site for more details.
2013 – Fall
Critical Autism Studies Book Coming Out
The book generated from the 2010 Critical Autism Studies workshop hosted by Michael Orsini and Joyce Davidson is set to come out this fall. The book includes a chapter by Dora and Christina entitled “Participatory research with autistic communities: Shifting the system.” See the publisher’s site for more details.
2013 – July 27
CBPR and Chaos Theory
Dora presented on leveraging the dynamics of science, policy, and community for systems change at the annual meeting of the Society for Chaos Theory in Psychology and the Life Sciences (SCTPLS). Specific examples of community-engaged research leading to systems change came from AASPIRE’s work.
2013 – June 4 – 6
Partnering Project at AAIDD
Dora and Katie presented on the Partnering with People with Developmental Disabilities to Address Violence project at the annual meeting of the American Association for Intellectual and Developmental Disabilities (AAIDD). They presented the results of the measurement adaptation and computer assisted survey instrument (CASI) development. They also provided a half-day workshop teaching others ways to better include people with developmental disabilities in research.
2013 – Spring
Partnering Project Completed – Paper Writing Started
The Partnering with People with Developmental Disabilities to Address Violence project has completed data collection and moved onward to the paper writing and dissemination stage. A presentation on the project’s Community Based Participatory Research process has been accepted at the AAIDD annual meeting.
2013 – April
Oregon Medical Association Keynote Address
Christina gave a keynote address to the Oregon Medical Association entitled “‘Do Unto Others…’ Doesn’t Always Work: Lessons on Improving Healthcare for Marginalized Populations.” A large portion of the talk focused on AASPIRE’s work to improve healthcare for adults on the autism spectrum.
2013 – March
Favorable Editorial on Healthcare Disparities Paper by David Mandell
The print copy of AASPIRE’s paper “Comparison of healthcare experiences in autistic and non-autistic adults: A cross-sectional online survey facilitated by an academic-community” was published in issue 28(6) of JGIM. A favorable editorial about the paper, written by David Mandell, was included in the issue.
2013 – February
Ethics Paper to Appear in Special Issue of American Journal of Public Health
Katie and Dora co-authored a paper “Paradigm shifts in disability and health: Towards more ethical public health research” to appear in the upcoming special issue of the American Journal of Public Health (AJPH) on the ethics of human subjects research with minority populations. We hope it will encourage researchers in public health to more deeply consider disability rights framing in research, and to conduct more inclusive and respectful research.
2013 – January
AASPIRE’s Academic Home Moves to Portland State University
AASPIRE Co-Director Christina Nicolaidis has accepted a position at Portland State University (PSU) as Professor and Senior Scholar in Social Determinants of Health. AASPIRE will be moving its primary academic home from Oregon Health and Science University (OHSU) to PSU, although ties with OHSU will be maintained. Congratulations to Christina on her new position!
2012 – November 30
Healthcare Survey Results Published
The results of our healthcare survey have been published by the Journal of General Internal Medicine in a paper “Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership”. We found that autistic adults report significantly worse health care experiences than their non-autistic peers. View the press release, download the paper (PDF, ~220Kb), or read the paper online.
2012 – October 29
AASPIRE Co-Director Christina Nicolaidis Serving as External Expert at IACC Strategic Planning Workshop
The workshop is open to the public.
The agenda, meeting materials, and instructions for video cast and conference call access are available at www.iacc.hhs.gov/events/2012/strategic-planning-workshop-announcement-oct29-30.shtml.
2012 – July 2-6
Presentation At Autreat
We presented at this year’s Autreat. Our presentation was called “Getting The Most Out of Healthcare”.
2012 – June 1
OpEd Piece in AMA Journal of Ethics
Article by Christina Nicolaidis published in online American Medical Association Journal of Ethics.
Nicolaidis, C. What Can Physicians Learn From the Neurodiversity Movement? Virtual Mentor: American Medical Association Journal of Ethics. June 2012<http://virtualmentor.ama-assn.org/2012/06/toc-1206.html>, Volume 14, Number 6: 503-510.
2012 – April 19
AAIDD Webinar with AASPIRE Members
2012 – February 24
Presentation at WTAS in Germany
Sebastian Dern presented “Healthcare outcomes and barriers to healthcare experienced by autistic adults in the United States” at the 5th Scientific Meeting for Autism Spectrum Conditions (WTAS) in Augsburg, Germany.
2012 – February 14
Autism NOW Webinar
2012 – February
Healthcare Toolkit Study 2 Started
Data collection for Study 1 of the Healthcare Toolkit has ended and collection for Study 2 has begun.