Autistic Self Advocacy Network (2006– )

The Autistic Self Advocacy Network, or ASAN, is a non-profit organization, based in Washington, D.C., that is operated by and for autistic individuals. Self-described autistic self-advocates Ari Ne’eman and Scott Michael Robertson founded the ASAN in 2006. Autism spectrum disorder, or autism, is a neurodevelopmental condition that affects how people interact with others, communicate, learn, and behave. As of 2025, an estimated one in thirty-six individuals is autistic. According to the ASAN website, Ne’eman and Robertson created ASAN because there were no autistic individuals involved in national discussions affecting autistic individuals and due to the prevailing view that researchers needed to find a way to cure autism. ASAN aims to spread awareness about the value of autistic individuals by providing them with support rather than a cure and by including them in societal decisions like law-making, research, and education. As of 2025, ASAN has around twenty-nine affiliate groups across the US, Canada, Mexico, Portugal, and Australia that share the mission of advocating for fair treatment and equal opportunities for autistic individuals and for general improvements to their lives.

Prior to the creation of ASAN, political and policy discussions about autism did not include autistic people. According to Julia Bascom, one of ASAN’s former executive directors, lack of inclusion in leadership positions allowed people to perpetuate stereotypes and hate towards those with autism and other neurodiverse conditions. Neurodivergence is a term that describes a person whose brain functions to process information differently than a typically developing person. Some of the most common neurodivergent conditions include autism, attention-deficit hyperactivity disorder, Down syndrome, and dyslexia, among others.

Prior to co-founding ASAN, Robertson earned his degree in computer science, and Ne’eman had just graduated from high school and was eighteen years old. After identifying their mission, Ne’eman began working as president of ASAN, and Robertson assumed the position of vice president. For the first four years of its existence, from 2006 to 2010, ASAN had no paid employees, only volunteers. ASAN and its volunteers earned public recognition in 2007 when they initiated a letter-writing campaign that led to the removal the “Ransom Notes” billboards that were then appearing throughout New York City, New York. According to Joanne Kaufman, a writer for The New York Times, the ad campaign included fear-inducing and shaming language about autism and other neurodiverse conditions by comparing the conditions to kidnappers holding children hostage and implying that neurodiverse individuals were burdens to others.

Also in 2007, Ne’eman spoke before a meeting of the Interagency Autism Coordinating Committee, or IACC, a US federal advisory committee to the secretary of health and human services. The law that authorized the creation of the IACC was the 2006 Combating Autism Act, which one of the law’s supporters called a federal declaration of war on the epidemic of autism. In his public comments, available on ASAN’s website, Ne’eman argued that the language of a war on autism, and the strong emphasis on curing the condition, was offensive to the autism community. He recommended that the IACC should shift their focus to improving the quality of life and access to equal opportunities for autistic citizens of the US.

After four years of grassroots efforts to improve the public’s understanding of autism, in January 2011, ASAN earned its first grant and became an official non-profit organization, allowing its leaders to expand its mission and impact. After ASAN achieved nonprofit status, it expanded its aims to support self-advocacy by broadening its focus to creating equal education opportunities for autistic individuals, as well as employment opportunities, and supporting research that involves those with autism. In the same year, ASAN acquired its first grant. With that funding, the leaders of ASAN established their headquarters in Washington, D.C., and expanded their staff. In the summer of 2011, ASAN organized a self-advocacy event at the Autism Summer Institute at the University of New Hampshire, in Durham, New Hampshire. That event gave adolescents and young adults the opportunity to chance to present on the assistive devices that they use. In December 2011, ASAN also started a symposium at Harvard Law School in Cambridge, Massachusetts, which allowed ASAN and autism advocates to create ethical guidelines for researchers, policy officials, and community members to use when working on topics or research involving autism.

From 2009 to 2012, the ASAN lobbied the American Psychiatric Association, which is a professional organization of psychiatrists, to revise the diagnostic criteria for autism in its fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM, a text used by clinicians to diagnose mental health and neurological conditions. The previous diagnostics in the DSM did not encompass all autism-related diagnoses and symptoms, so ASAN worked with the Neurodevelopmental Disorders Workgroup, which was then revising the DSM. ASAN was unable to get all the goals or changes that they requested, but the DSM-5 did incorporate some of them to make the diagnosis more inclusive. One change they were able to include was certain diagnosis considerations for adults, women and girls, and ethnic minorities, as physicians often under-recognize those groups in autism diagnosis. For example, it previously did not consider adults who have developed coping mechanisms to mask symptoms of autism.

According to Steven K. Kapp and Ne’eman, who had both helped lead the work for the DSM-5, they also worried about the inclusion of recovery criteria, which indicated that an individual with autism was able to lose or recover their diagnosis. Looking at previous literature and other experiences, physicians had re-diagnosed those who had recovered or given them a different diagnosis, which caused them to lose access to certain services. Although ASAN had requested the removal of a severity scale, the scale remained in the DSM-5. However, they included that physicians should not use the severity to determine the eligibility of services and that it should depend on the individual’s needs.

Along with influencing the decision to alter the DSM-5 diagnosis of autism, ASAN was also creating supportive resources for autistic adults and advocating for the increase of minimum wage for those with disabilities. Additionally, ASAN created resources to support autistic adults in education and employment. In 2013, ASAN published a book for autistic college students, Navigating College: A Handbook on Self Advocacy Written for Autistic Students, written by autistic adults, which guides autistic individuals in traversing college. In 2014, ASAN also advocated for raising the pay for disabled individuals, which was below minimum wage at the time. ASAN, along with other disability organizations, wrote a joint letter and campaigned to get those with disabilities included in the executive order to raise the minimum wage for concession contractors and federal service workers.

In 2015, ASAN partnered with Sesame Workshop, which is a non-profit organization that produces educational children’s television programs, to help create one of the first autistic characters for the children’s television show, “Sesame Street.” “Sesame Street” created Julia, an autistic character who according to Lindsey Bever, a writer for The Washington Post, represented a true portrayal of autistic children through traits of minimal eye contact, repetitive speech, and specific interests.

At first, ASAN’s involvement in creating the character Julia positively represented the autism community. However, in 2019, after Julia’s creation, “Sesame Street” announced that they partnered with Autism Speaks, which according to ASAN, is a non-profit autism awareness organization with minimal autism representation that supports preventative autism research. Autism Speaks aimed to make Julia the center of a campaign that encouraged early screening and diagnosis of autism. According to Bever, ASAN is vocal about their distrust and lack of support for Autism Speaks. As of 2025, the ASAN website makes clear that the ASAN still expresses disagreement with the practices and beliefs of Autism Speaks, as they continue to spread negative stereotypes about autism. Chiugo Okoye and colleagues, a group of researchers studying various aspects of medicine, published a paper stating that early diagnosis of autism can have risks because it can stigmatize a child from an early age and lead to poor self-esteem. Additionally, they explain that early autism diagnostic tests may even result in misdiagnosis.

Starting in January 2017, Bascom took over Ne’eman’s position as executive director of ASAN so he could transition to a role on the board. Bascom is an autistic woman who previously worked in advocacy at the state level in New Hampshire. During her time as executive director of ASAN, she helped to double the size of ASAN’s policy team, improve diversity in ASAN to accurately mirror the population of autistic individuals, and better represent people of color as well as those of diverse genders. Additionally, Bascom and ASAN helped relabel the month of April as Autism Acceptance Month instead of Autism Awareness Month to limit discussion on the search for a cure for autism. Her efforts at ASAN also helped to create easy-read guides so that anyone, including those with intellectual disabilities, can understand how to advocate for themselves on important issues such as Medicaid, voting, and federal budgets.

ASAN and the organization’s advocacy efforts have spread to Australia, New Zealand, Canada, Mexico, and Portugal. In total, there are nine international affiliate groups of ASAN, and six of them are in Canada. ASAN provides the affiliate groups with assistance and support, while the affiliate groups focus on concerns that are pertinent to them. For example, the Autistic Self Advocacy Network of Australia and New Zealand, or ASAN AUNZ, started testing an app in 2022 that they specifically designed to support autistic people who are experiencing a crisis in a public setting. Members of the ASAN AUNZ communicate with government officials, sit on national committees to advocate for autistic people, share informational resources on social media channels, and serve as research consultants.

According to Joseph F. Kras, an associate professor and physician at Washington University in St. Louis, Missouri, ASAN helped push forward the neurodiversity movement that helped educate others on how to accept autism and autistic people. They did that through their advocacy campaigns like one against the “Ransom Notes” billboards and by uploading their public addresses about inefficacies, such as pay disparities, to their website platform. Their efforts allowed some of their autistic board members, like Ne’eman, to take political positions to guide disability policy. According to Kras, ASAN’s organized advocacy responses over the years represent the evolution of the modern neurodiversity movement.

Through their actions of supporting affiliate groups, assisting in revising diagnostic criteria, and developing resources to support autistic adults, ASAN has shaped public understanding of autism and worked to empower autistic individuals. To further their mission of improving the quality of life for autistic individuals in all domains of society, ASAN has partnered with eleven other programs or organizations like the Modern Medicaid Alliance and Leadership Conference on Civil and Human Rights. ASAN’s collaborations with the US government and other disability organizations represent the autistic population’s wishes for inclusion in policy decisions about research and resources by including them. That may allow for further neurodiversity inclusion and advocacy in the future. As of 2025, ASAN continues to empower autistic individuals through their creation of accessible resource guides, work with large government organizations to leverage equality, and their involvement in bringing awareness to information and political decisions that may be harmful to autistic people.

Bascom stepped down as executive director of ASAN at the end of 2023, due to medical complications from long COVID. As of 2025, Colin Killick, an advocate for disability rights, serves as executive director.

Sources

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