January 2013 Newsletter

Message to the Community

Ring out the old, bring in the new. 2012 came and went in a flash. We here at the Autistic Self Advocacy Network are excited at the prospect of a new year. 2012 came and went in a flash: vigils, our first Autism Campus Inclusion summer leadership academy, policy briefs on the DSM 5, and the launch of the Loud Hands Project, to say nothing of the work of our local chapters–too much to list here! As a community, we grew, bringing in new staff, new board members and new chapters. And we we embark upon 2013, we know that this year is already even bigger, better, and busier!

What does 2013 look like for ASAN? You will see in the coming articles that our projects are already in full motion. Our chapters are going strong, with some leaders speaking at conferences, creating their own events, or becoming 501(c)3’s. Our second annual Autism Campus Inclusion summer leadership academy is taking applications, our resume bank is growing, and our policy briefs on disability and health care with Special Hope are forthcoming. We will be remembering those taken from us with a new round of vigils in March, and celebrating the Autistic community during our 2nd annual Autism Acceptance month. As we begin exciting new projects, publishing initiatives, and policy work, we invite you to join us in the coming year, whether as a volunteer, by starting or joining a chapter or just becoming a member.

When all is said and done, ASAN is no more than the community we serve. We strive to make the Autistic community heard in all conversations about us. We cannot do that without all of you! Let’s march together as we push through the barriers created around us.

ASAN Projects for the Coming Year

Caroline N.

As we look forward to the rest of the coming year, the Autistic Self Advocacy Network is excited to announce several new initiatives, and to report progress on ongoing projects.

The Loud Hands Project and Other Publications

Last month, we announced the publication of The Loud Hands Projectan anthology of essays written by Autistic people, about various personal and societal issues related to autism. The collection, available via print and e-book, is the initial, founding document for a larger transmedia project, and we will be implementing the next phases of The Loud Hands Project in the near future. This will include launching an in-depth, interactive website that will provide information and resources related to self-advocacy, provide a platform for ongoing text and video submissions, and serve as a hub for the Autistic community. The purpose of The Loud Hands Project is to provide a space for Autistic people to make their voices heard. The project is spearheaded by ASAN staff member Julia Bascom. More information can be found on The Loud Hands Project Tumblr.

The release of the printed anthology component of the The Loud Hands Project also marks the launch of ASAN’s in-house publishing initiative, The Autistic Press. This is a continuation of our ongoing, successful effort to produce quality printed resources addressing the needs and concerns of the Autistic community. We are currently preparing additional manuscripts for publication in the very near future, including an anthology on autism and employment, and another collection about relationships and sexuality.

ACI Summer Leadership Academy

This year will also mark the return of our Summer Leadership Academy, as part of the Autism Campus Inclusion Project (ACI). The program provides Autistic students with training and tools to support successful self-advocacy on their college campuses. The ACI Summer Leadership Academy is currently accepting applications from Autistic college students who have at least one year remaining before graduation.

Ongoing Advocacy, Support, and Collaboration

In addition to these projects, in 2013 ASAN will be developing technical assistance for projects related to hidden disabilities and employment, continuing our policy advocacy with regard to housing, healthcare, and employment, and continuing to expand our corporate partnership. As we keep moving into 2013, we look forward to your continued support and collaboration.

Autistic Adults and Healthcare

Lydia B.

Disabled people have had a long history of lack of access and opportunity in employment that unfortunately continues today, with developmentally disabled adults having the highest rates of unemployment and underemployment among all categories of disabled people. This extends to Autistic adults, who are significantly more likely to be unemployed or underemployed than non-Autistic adults. This problem is further compounded by the simple fact that many Americans receive health insurance as a benefit of employment or otherwise are only able to afford their health insurance plans because of their employment.

The Affordable Care Act (ACA) will eliminate many former barriers to health insurance and thus, access to healthcare, for disabled adults by prohibiting insurance companies from denying coverage because of “pre-existing conditions,” ending annual and lifetime dollar limits on benefits, extending Medicaid eligibility to childless adults, and allowing young adults to remain on their parents’ insurance plans until they are twenty-six.

Many Autistic adults receive public assistance funding through housing vouchers, such as Section 8 or Social Security Supplemental Income (SSSI), because they are not earning sufficient pay to be financially independent. One crucial component of the ACA provides incentives to states for expanding Medicaid coverage to residents whose annual income falls within 133% of the federal poverty line. Such expansions of Medicaid coverage will impact around 3.5 million disabled adults who previously could neither afford private health insurance nor were eligible to receive Medicaid assistance.

The ACA also allows young adults to receive coverage under a parent or guardian’s insurance plan until the age of 26. Autistic youth are more likely to live for longer with a parent or guardian, more likely to face a variety of barriers to attending or completing postsecondary education, and more likely to face increased difficulty in obtaining and keeping employment after completing their education. As a result, Autistic youth are far less likely to be able to afford private insurance or to receive insurance coverage as an employment benefit than non-disabled youth.

In another move that may impact many Autistic adults and those with other developmental disabilities, the ACA expands Medicaid coverage for comprehensive community-based personal attendant services in addition to strengthening and incentivizing coverage for home and community based services (HCBS) over coverage for services provided in institutional settings. Most importantly for Autistic adults, however, the Affordable Care Act prohibits insurance providers from denying or terminating coverage because of a pre-existing condition, which was formerly a common practice and the frequent cause of denial of insurance coverage for Autistic adults who could otherwise afford private insurance.

Nevertheless, despite the monumental changes in the law that will provide greater access to healthcare for Autistic adults, we face a crisis within a medical community that operates in largely inaccessible environments and lacks any meaningful understanding of effective means of respectfully serving Autistic people seeking either routine or specialized medical care. A paper recently published through the Academic Autistic Spectrum Partnership revealed significant disparities in healthcare impacting Autistic adults across the United States, leading to questions of how the medical field can develop professional standards of education and training to vastly improve cultural competencies for serving and accommodating Autistic adults.

In the absence of accessible literature and health education, Autistic youth and adults will be unable to make informed decisions about healthcare, medical providers, and medical procedures. Similarly, medical professionals lacking cultural competencies in serving Autistic adults will further contribute to the existing healthcare disparities adversely affecting our community regardless of legal reforms seeking to advance access to healthcare. Legal access should not be conflated with functional accessibility. More community-based research and reform of current practices will be necessary to address these growing disparities, and the medical community should look to the Autistic community for guidance.

ASAN Thanks A Visionary Leader for Four Years of Trailblazing


On Wednesday, January 9th, Secretary of Labor Hilda Solis submitted her resignation to President Obama. She was initially confirmed as Secretary of Labor in February of 2009. According to NPR, Solis said of her resignation, “Growing up in a large Mexican-American family in La Puente, California, I never imagined that I would have the opportunity to serve in a president’s Cabinet, let alone in the service of such an incredible leader.”

Solis is the first Hispanic woman to serve in a Cabinet position, and during her time as Labor Secretary she stood as an advocate for America’s working class and for the LGBTQ community. She also showed strong support for the disability community, as evidenced by her appointment of Kathy Martinez to serve as Assistant Secretary of the Office of Disability Employment, and the bold policy work done throughout her tenure.

During Solis’ tenure as Secretary of Labor, the Department of Labor’s Office of Disability Employment Policy (ODEP) undertook many initiatives, led by Assistant Secretary Kathy Martinez, to address employment-related issues and disparities faced by disabled Americans. One of the most significant obstacles faced by people with disabilities is unemployment, which is caused and/or exacerbated by discrimination on the part of potential employers, a lack of accessible employment resources, and widespread misconceptions about disabled people.

Under the leadership of Solis and Martinez, the ODEP has developed several priority initiatives to address unemployment in the disability community. These include a concerted effort to increase employment of disabled people within the federal government and by federal contractors, an initiative focusing on disability hiring and small businesses, and outreach efforts to change negative public perceptions of disability. The ODEP also works to increase access to employment-related resources through the Disability Employment Initiative, a grant program that awarded over 43 million dollars to sixteen states to provide training and services to improve the outcomes of disabled individuals who are unemployed, underemployed, and/or receiving Social Security.

Under the Integrated Employment and Employment First initiatives, the ODEP has addressed the employment needs of individuals with the most significant disabilities. “Integrated employment” refers to ensuring that people with profound disabilities are provided the opportunity to seek employment in workplaces where the majority of employees are not persons with disabilities. The Employment First Leadership State Mentor-Protege Program was launched to assist three selected states—Iowa, Tennessee, and Oregon—with developing strategic plans for providing integrated employment as the first option for both youth and adults with significant disabilities. Once the ODEP has learned what works best in these states, the Office will distribute comprehensive information on the most effective practices to help other states implement similar programs.

The Autistic Self Advocacy Network would like to voice our appreciation for Solis’ work in support of the disability community, and to wish her the best of luck in her future endeavors.

News and Advocacy Updates

Wal-Mart Announces Vets Program

Earlier this month, the president and chief executive of Wal-Mart US, William S. Simon, announced an extensive program to hire more than 100,000 veterans over the next 5 years. A representative at Wal-Mart made it clear that the company “wants people in the disability community to know that their recent landmark announcement related to the hiring of veterans, includes veterans dealing with physical or mental post service issues and disabilities.” Furthermore, Wal-Mart is “committed to accommodating those veterans in a way that is consistent with applicable legal requirements in hiring applicants with disabilities.” Wal-Mart committed to hire any honorably discharged veteran within his or her first twelve months off active duty, starting Memorial Day.

Help Empower the Autistic Community in 2013 by Donating Now to ASAN

Help show your support for ASAN and our work by visiting our donor page and offering a donation. There are many different options for giving, so you can be sure to find a way to donate that works within your budget. Thank you so much for support!

Upcoming Webinar on Pathways to Federal Employment

Pathways Programs is offering a free webinar on opportunities with the Federal government, including internships for students and careers for recent graduates. The session will provide a break-down of the process for applying to Federal jobs or internships. The webinar will be held on Wednesday, February 13th, from 4 pm to 5 pm Eastern standard time. Click here to access free registration.

LEAD is Offering a Webinar to Introduce Their Goals and Initiatives

The National Center on Leadership for the Employment and Economic Advancement of People with Disabilities (LEAD) is offering a seminar to introduce their goals and planned activities. LEAD is a new collaborative undertaking between disability, workforce, and economic empowerment organizations dedicated to improving employment and economic advancement opportunities for people with disabilities. LEAD is funded through the Department of Labor’s Office of Disability Employment Policy (ODEP), and led by the National Disability Institute. Registration for their introductory webinar is free and can be accessed here. The webinar will be held on Wednesday, January 30th, at 3 pm Eastern standard time.

ASAN Releases Statement on the Fein Study on Autism and “Recovery”

A recent article in the Journal of Child Psychiatry and Psychology argues that some Autistic children eventually reach what the authors term an “optimal outcome” by moving out of their Autism Spectrum Disorder diagnosis. ASAN Research Committee Chair Steven Kapp has drafted a statement for ASAN addressing the article and its argument. ASAN’s position is that autism is a part of human experience, and that the goal of research and services should be to support the happiness and individual health of all Autistic people. Please take the time to read the complete statement.

APRAIS Drafts Letter Regarding Funding for the Judge Rotenberg Center

The Judge Rotenberg Center has been the rightful target of fierce controversy and advocacy efforts to close the facility because of its rampant use of abusive aversion techniques against people with developmental disabilities. In collaboration with ASAN and numerous other disability advocacy organizations, the Alliance to Prevent Restraint, Aversive Interventions, and Seclusion (APRAIS) has drafted a letter to the Office of Special Education and Rehabilitative Services, and to the Centers for Medicaid and CHIP Services and Medicare and Medicaid Services, calling for the complete cessation of all Federal funding for the Judge Rotenberg Center.

NDLA Drafts Letter to the Vice President’s Task Force on Gun Violence

In collaboration with ASAN and other disability self-advocacy organizations, the National Disability Leadership Alliance (NDLA) has drafted a letter to Vice President Joe Biden’s Task Force on gun violence. The letter applauds the Task Force’s and administration’s efforts to decrease gun violence, and expresses concern about the ways in which people with mental and developmental disabilities have been portrayed in wake of recent tragedies. The letter also cautions against any future measures that may inadvertently contribute to discrimination against people with disabilities, and requests an opportunity for NDLA representatives to meet with the VP Task Force in the course of deliberating on the best policy changes to effectively curb gun violence. You can take the time to read the full letter here.