Our projects seek to improve public understanding of autism, to involve the Autistic community in research that is relevant to the community’s needs, to empower Autistic people to take leading roles in advocacy, and to promote inclusion and self-determination. Our current projects include the Health Care Access Issues project sponsored by the Special Hope Foundation; the Autism Campus Inclusion program sponsored by the Mitsubishi Electric American Foundation and the Amerigroup Foundation; the Employment and Resumes project to match qualified Autistic applicants with job openings; the Autism NOW National Resource and Information Center; the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE); the Partnering with People with Developmental Disabilities to Address Violence and Health project; and the Loud Hands Project. Each of these projects is described in more detail below.
Health Care Access Issues
Twenty-three years after the passage of the Americans with Disabilities Act, people with disabilities continue to face persistent and ongoing discrimination and lack of access in health care settings. ASAN has received a grant from the Special Hope Foundation to analyze health care access issues faced by people with disabilities and to produce policy briefs addressing how equal access can be provided.
In response to numerous reports of discriminatory practices adversely impacting people with disabilities, ASAN has produced an analysis on discrimination against people with intellectual and developmental disabilities seeking organ transplants. Along with extensive documentation of the scope of the problem, our policy brief provides a series of five key recommendations for policy changes to help ensure that people with intellectual and developmental disabilities enjoy equal access to organ transplants and necessary post-operative care. This is the first of our policy briefs on health care access for people with disabilities. It can be accessed at no cost through the link below:
Many in the disability community are unfamiliar with how the Affordable Care Act (ACA) will impact them when it is fully implemented. In addition, advocates looking to monitor and enhance implementation of the ACA for people with disabilities are frequently left without a clear and comprehensive description of opportunities and challenges yet to come. ASAN has created a policy brief that provides a summary of relevant provisions of the ACA and analyzes opportunities for advocates to enhance the impact of the law’s implementation for people with intellectual and developmental disabilities. This brief is the second in our Health Care Access Issues series funded by the Special Hope Foundation, and it is available through the following link:
Youth with developmental disabilities face numerous challenges with regard to maintaining effective and continuous health care as they reach adulthood. ASAN has released a new policy brief on addressing the health care needs of autistic youth and others with developmental disabilities as they transition to adulthood. This brief provides recommendations to ensure that young adults with intellectual and developmental disabilities receive consistent access to quality health care, as well as support in taking on adult levels of autonomy with respect to their own health care needs. This resource may be downloaded free of charge through the link below:
Autism Campus Inclusion
Autistic students participating in our Autism Campus Inclusion Summer Leadership Academy program, funded by the Mitsubishi Electric American Foundation, spent a week in Baltimore, MD, in August 2012 learning how to effect systems change in their individual campuses and increase their own skills in self-advocacy and self-help.
This program, designed for undergraduate students who identify on the autism spectrum and who have a strong interest in the Disability Rights and Autistic Rights movements, is still ongoing. We hosted another Summer Academy in Washington DC in June 2013, with additional support from the Amerigroup Foundation. This program featured a “Hill Day” event, in which participants visited Capitol Hill, discussed how laws are made, and met with their representatives in Congress.
Employment and Resumes
ASAN is working with corporations and agencies to ensure the inclusion of Autistic adults in diversity hiring programs. Several large American corporations have expressed interest in hiring Autistic people to create a more diverse atmosphere at their workplaces. The federal government has an ongoing initiative to hire more workers with disabilities, including Autistic workers. Moreover, ASAN often learns of job openings in the government, non-profit, advocacy and public policy sectors. We currently maintain a database of resumes submitted by qualified Autistic people; the resumes are available to employers upon request. For privacy reasons ASAN will not make the database itself publicly searchable or available.
Our initial call for resumes in May 2011 focused on Autistic adults in the Washington, D.C. Metro area with college educations and/or backgrounds in information technology, computer science, biology, finance, economics, political science, marketing, and other professional fields. We plan to expand our database further as more opportunities become available. ASAN has been working with Freddie Mac, a leading mortgage finance company, to recruit qualified applicants for paid internships.
Individuals who submit resumes agree that ASAN may share their resume and any information they provide with potential employers, including their status as a person on the autism spectrum. Individuals should only submit resumes to ASAN if they are comfortable having this information shared. Resumes should be emailed as attachments to firstname.lastname@example.org. Please ensure that resumes include contact information, educational and employment experience (including internships), volunteer experience, and types and areas of work sought. Please do not direct follow-up inquiries to ASAN. We ask that those who submit resumes continue their own searches for jobs, as we cannot guarantee that applicants will gain employment.
Autism NOW National Resource and Information Center
ASAN is a partner organization on the Autism NOW National Resource and Information Center, which is funded by a grant to The Arc via the U.S. Administration on Developmental Disabilities. The Autism NOW Center seeks to disseminate information and resources about autism to a wide range of people, including Autistic people, parents, and others interested in autism. The Center provides an information and referral call center, which can be reached at 1-855-828-8476. Activities of the Center reflect the principles of inclusion, integration, independence, and self-determination as set forth in the Developmental Disabilities Assistance and Bill of Rights Act of 2000.
Services provided by ASAN include directing and managing special projects, including social media exchanges, and providing liaison with the Center’s Advisory Committee. ASAN took the lead in developing the Center’s Core Values statement. ASAN chapters in five regions of the country worked to create focus groups on ethics and values of the Autistic, autism, and developmental disability communities. ASAN developed an online survey on ethics and values. The results of the focus groups, survey, and other input formed the basis for a final report and Statement of Core Values.
ASAN has been working to develop self-advocacy tools addressing issues such as college, relationships, and employment. ASAN’s outreach and dissemination activities on behalf of the Center include participation in regional summits, webinars, and resource sharing. The Center presents two webinars per week, covering a variety of topics relating to autism and other developmental disabilities.
Academic Autistic Spectrum Partnership in Research and Education (AASPIRE)
The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) brings together the academic community and the autistic community to develop and perform research projects relevant to the needs of adults on the autistic spectrum. The partnership adheres to the principles of Community Based Participatory Research (CBPR or PAR), whereby researchers and community members serve as equal partners throughout the research process. The special skills, expertise, and perspective that each community offers to the project as a whole is the strength of Community Based Participatory Research. AASPIRE is based at Oregon Health and Science University and partners with other academic and community institutions and organizations, including Portland State University and the Autistic Self-Advocacy Network. For more information about AASPIRE and its current research projects, please see http://aaspire.org.
Partnering with People with Developmental Disabilities to Address Violence and Health
This Community Based Participatory Research project seeks to understand the relationship between violence, victimization, and health in people with developmental disabilities. The Autistic Self Advocacy Network is collaborating on this project along with the University of Montana, Oregon Health and Science University, Portland State University, Self Advocates As Leaders, Bitter Root Valley People First, and Summit Independent Living Center. For more information, see the AUCD 2009 RTOIs.
Loud Hands: Autistic People, Speaking is a collection of essays written by and for Autistic people. Spanning from the dawn of the Neurodiversity movement to the blog posts of today, Loud Hands: Autistic People, Speaking catalogues the experiences and ethos of the Autistic community and preserves both diverse personal experiences and the community’s foundational documents together side by side.
Questions addressed by the contributors include what does autism mean to you; why does Autistic culture matter; what do you wish you had known growing up Autistic; how can the Autistic community cultivate resilience; what does “loud hands” mean to you; and how do you have loud hands? The anthology is the first of a projected series featuring contributions from Autistic writers stressing the preservation and celebration of Autistic culture and resilience.
To visit ASAN’s archive of completed projects, click here.