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Completed Projects

Descriptions of ASAN’s past projects beginning in 2011 are archived here, along with links to policy briefs and other materials which were produced in connection with those projects.

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.

Currently, ASAN works with Autism NOW staff to develop self-advocacy tools addressing issues such as college, relationships, employment, autistic identity, and access services and supports. 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.

The Loud Hands Project

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.

 

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.

 

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.

 

The DJF-ASAN Empowering Autistic Leaders Project

Although college students with disabilities often receive accommodations, they usually do not have the opportunity to take classes about the history of Americans with disabilities and the disability rights movement. They also are not specifically taught how to advocate for better support for people with disabilities.

Produced by the Autistic Self Advocacy Network and funded by the Daniel Jordan Fiddle Foundation, this project focuses on teaching Autistic college students how to engage in policy advocacy through their college campuses. Topics covered in our Empowering Disabled Leaders booklet include how to form effective student groups, disability history and disability laws, and strategies to bring about systems change in higher education.

Ethical, Legal and Social Implications of Autism Research

This project, funded by a grant to ASAN from the U.S. Administration on Developmental Disabilities, was launched on December 10, 2011, at Harvard Law School with a symposium of researchers, self-advocates, family members, and activists. The symposium addressed ethical concerns in autism research, such as prenatal testing, community participation in research methodologies, appropriate and inappropriate intervention goals, enhancing the effectiveness and inclusivity of Institutional Review Boards, setting diagnostic criteria, and balancing competing concerns of safety and self-determination.

In collaboration with the Harvard Law Project on Disability and the Petrie-Flom Center for Health Law, Biotechnology and Bioethics, ASAN worked to set forth a framework for future action by researchers, policymakers, and community partners. In 2012, we wrote two policy briefs discussing the DSM-5 autism criteria and the impact of the proposed changes. These briefs can be accessed free of charge through the links below:

What Are the Stakes? An Analysis of the Impact of the DSM-5 Draft Autism Criteria on Law, Policy and Service Provision

ASD in DSM-5: What the Research Shows and Recommendations for Change

Autism Summer Institute

ASAN organized the self-advocacy strand at the 2011 Autism Summer Institute, a conference held at the University of New Hampshire’s Institute on Disability. This annual event provides an opportunity for families, educators, service providers, and self-advocates to discuss ways to improve educational programs and community inclusion for the Autistic population. Several Autistic self-advocates were featured as keynote presenters. The self-advocacy track, designed for adolescents and young adults, included presentations by teenagers using assistive devices to communicate.

The theme of the 2011 conference, focusing on literacy instruction and assistive technology, was “Everybody Reads, Everybody Writes, Everybody Has Something to Say.” Exhibits included a hands-on technology exploration room to enable participants to become familiar with assistive devices used by people with autism and related disabilities. Social events, including film screenings, took place in the evenings.

Joint Report on Home and Community Based Services

The Centers for Medicare and Medicaid Services invited public comment in 2011 on establishing minimum quality standards for providers of home and community based services (HCBS). The Autistic Self Advocacy Network joined with two other self-advocacy groups, Self Advocates Becoming Empowered and the National Youth Leadership Network, to prepare a report on what community living means. In addition to discussing what kinds of living arrangements should qualify for HCBS funds, this report addressed policy issues in the areas of housing, education, employment, and transportation.  It is available as a free download through the following link:

Keeping the Promise: Self Advocates Defining the Meaning of Community Living

Real Talk: Improving Quality of Sexual Health Care for Patients with Disabilities

Since January 2015, the Autistic Self Advocacy Network (ASAN) and the National Council on Independent Living (NCIL) have operated Real Talk: Conversations and resources about sexuality for young people with disabilities and sexual health providers. Supported by a grant from the HSC Foundation, Real Talk has provided the space for young people with disabilities to create tips and resources for sexual health providers and other professionals on how they can provide inclusive, culturally-appropriate, accessible education and resources to people with disabilities.

Real Talk began with a series of dialogues with young people with disabilities about their experiences with sexual health providers. These dialogues culminated in the creation of a guide for sexual and reproductive health providers about inclusion and accommodations when working with this people with all types of disabilities.

Real Talk: Improving Quality of Sexual Health Care for Patients with Disabilities webinar slides are available in both PowerPoint and PDF formats.

Download the webinar slides PowerPoint

Download the webinar slides PDF

ASAN and NCIL also produced a Provider Toolkit with information about how to improve accessibility, access, and attitudes surrounding sexual health care for people with disabilties.

You can download the Real Talk Provider Toolkit here.

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