Autistic Self-advocacy Network

Noor Pervez Community Engagement Manager

Noor Pervez is the Community Engagement Coordinator at the Autistic Self Advocacy Network. He previously led his campus LGBT+ advocacy group, Rainbow Guard, and gave a number of talks regarding intersectionality. His previous work centered on exploring the intersections of disability, LGBT+ and religious issues. He is a graduate of the University of Texas at Dallas with a degree in Emerging Media and Communications.

Aj Link Policy Analyst

AJ Link is openly autistic. He received his JD from The George Washington University Law School and his LL.M in Space Law at the University of Mississippi School of Law. He is the inaugural director of The Center for Air and Space Law Task Force on Inclusion, Diversity, and Equity in Aerospace and an adjunct professor of space law at Howard University School of Law. AJ is the Communications Director for Mission: AstroAccess and works as a research director for the Jus Ad Astra project. He serves as the Space Law and Policy Chair for Black in Astro and was the founding president of the National Disabled Law Students Association. AJ is a policy analyst for the Autistic Self Advocacy Network. He has been actively involved with disability advocacy in the Washington, DC area and nationally within the United States. He serves on several advisory boards and steering committees that focus on disability advocacy and broader social justice movements.

Autistic Self Advocacy Network

The Autistic Self Advocacy Network is an American 501nonprofitadvocacy organization run by and for individuals on the autism spectrum. ASAN advocates for the inclusion of autistic people in decisions that affect them, including: legislation, depiction in the media, and disability services.

The organization is based in Washington, D.C., where it advocates for the United States government to adopt legislation and policies that positively impact autistic people.

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Kelly Israel Policy Analyst

Kelly Israel is a Policy Analyst at ASANs national office. She, under ASANs Legal Director, works to advance the legal, legislative and administrative policy objectives of ASAN. She is a graduate of American University, Washington College of Law and served as student attorney in its Disability Rights Law Clinic. In that capacity she was legal counsel for clients with disabilities in a wide variety of cases, including special education and ADA reasonable accommodations issues. She has also worked for other public interest organizations on the death penalty and on guardianship in the United States. Her chief interests are the education of children with disabilities, supported decision-making as a viable alternative to guardianship, and the over-criminalization of people with developmental disabilities.

Greg Robinson Deputy Director Of Public Policy

Greg Robinson is the Deputy Director of Public Policy at ASANs national office. He holds a Masters Degree in Public Health Studies from the University of Pennsylvania. Prior to ASAN, he worked in community program development around housing and community health for underserved communities in Philadelphia as an Americorps VISTA, and in inclusive career development and employment supports for undergraduate students as a graduate assistant at Drexel University. His passion in policy centers around the intersections of social determinants of health in marginalized communities.

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Jean Winegardner Office Manager

Jean Winegardner is the Office Manager at the Autistic Self Advocacy Networks DC office. She is an Autistic mom to three delightfully neurodivergent children, who brought her into the world of disability advocacy as she learned about what they need and want out of life. She is passionate about furthering acceptance and embrace of disabled children and adults. Jean has a masters degree in print journalism from the University of Southern California. She and her husband live in Maryland. She enjoys movies, reading, running, and small, amusing rodents.

Zoe Gross Director Of Advocacy

Zoe Gross is Director of Advocacy at Autistic Self Advocacy Network. Previously, she worked as a special assistant at the Administration for Community Living, and as a policy analyst on Senator Tom Harkins Health, Education, Labor and Pensions Committee staff. In 2012, Zoe created the annual Disability Day of Mourning vigil, a national, cross-disability event which commemorates the lives of disabled people murdered by their family members or caregivers. She received a White House Champions of Change award for this work in 2013.

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Founded By An Autistic

My name is Nathan Young, and I founded the Autism Advocacy Network platform after spending approximately six years studying computer programming and achieving my IBM Data Science Professional Certification with the help of social services support staff. I grew up in a military family and I firmly understand and respect the freedoms guaranteed in the constitution. I believe that diverse ideas should be welcomed and celebrated in autism advocacy. To me, autism self-advocacy is about respecting and empowering the individual to think openly and creatively instead of empowering one set of ideas or beliefs. Respecting Individuals

AAN values policies that encourage and allow for diverse ideas to constructively co-exist. Tolerance of diverse ideas is important so that new ways of thinking can evolve, become appreciated, or be recognized as acceptable. Without this fundamental respect for diverse ideas, reconciliation and change can be slower, if not impossible. The Socratic Method is a communication style that allows for a constructive dialogue between individuals.AAN believes in honoring different ways of thinking:

Scientific thinking is the ability to use the scientific method to solve problems. It involves gathering data, forming hypotheses, testing hypotheses, and analyzing results.

AAN believes in preserving dignity and forgiveness whenever possible:

Autism Advocacy Network

The Future Of Autism Advocacy Or Why The Asa’s Magazine The Advocate Wouldn’t Publish This Piece1ari Ne’emanautistic Self

In recent years, a growing number of autistic people have begun to demand a more active role in the public policy, research, service-delivery and media discussions that impact our lives. As the national conversation about autism has increased in tone and fervor, we who are the targets of this discussion have not been consulted. To those who believe in the motto of the disability rights movement “Nothing About Us, Without Us!” this situation has to change. Sadly, the traditional autism community has been driven by a set of priorities different from our own. Led almost exclusively by those not on the autism spectrum, it has made harmful decisions without our input. In response, this new autistic community has behaved very differently, a fact that now manifest itself in many ways. From a growing number of self-advocate run autistic social and support groups popping up across the country to larger autistic-run and mostly autistic-attended conferences like Autreat and Autscape, self-advocacy is on the rise. In some respects, new online technologies have assisted the development of this community, as nonverbal communication and geographic distance become less relevant in the world of the Internet. In other respects, however, the rise of the autistic community has been the natural result of increased awareness and diagnosis, leading to more and more autistic adults who are ready to come together to ask, “Where do we go from here?”

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Opposition To Kevin And Avonte’s Law

ASAN opposed Kevin and Avonte’s Law, which would have provided money to fight wandering behavior in autistic children. ASAN was originally neutral, but after several modifications were made, including an amendment that would have allowed for the installation of tracking devices on people with disabilities, ASAN and several other disabilities rights groups opposed the proposed law over privacy concerns. Additionally, Ne’eman said that “The use of the ‘wandering’ label on adults will enable abuse and restrict the civil rights of Americans with Disabilities” and that it would “make it easier for school districts and residential facilities to justify restraint and seclusion in the name of treatment.” As a result, Congress did not pass Kevin and Avonte’s Law. Later, a revised version of Kevin and Avonte’s Law passed which did not include the language ASAN had objected to.

Donnie Denome Publications Associate

Donnie TC Denome is ASANs Publications Associate. They hold a Masters of Public Health degree from Claremont Graduate University. Previously, Donnie worked as a journalist, a peer health educator, a freelance technical writer, and a museum docent. Their area of interest and expertise within public health is health education and harm reduction for adults with intellectual, communication, and developmental disabilities. They have a passion for Easy Read and Plain Language writing, equitable access to health care, and brightly patterned clothing.

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Work With Sesame Workshop

In 2015, ASAN worked with Sesame Workshop to create an autistic character for Sesame Street, named . In August 2019, ASAN announced it had ended its partnership with Sesame Street after it began to associate with Autism Speaks. ASAN described the materials produced is association with Autism Speaks as “incredibly harmful information with useful information with little to no distinction”, including theories and narratives about autism that are not scientifically supported, and medical advice not backed by scientific research. ASAN reports that it discussed the harmful implications of these ideas with the producers of Sesame Street, and that the producers acknowledged that the ideas were harmful but would not reconsider their collaboration with Autism Speaks.

Implications For Early Autism Intervention

Objections to neurodiversity are often based on an erroneous conception of the tenets of the movement . Fundamentally, neurodiversity emphasizes the collective strength inherent in cognitive diversity and that this strength arises from all kinds of differences, including those associated with autism, intellectual disability or language impairment . Moreover, neurodiversity activism, which includes some non-speaking activists, specifically includes and advocates for those who are unable to do so themselves. A balanced view of neurodiversity recognizes that, whilst diversity brings fundamental collective advantages, within any one neurodivergent individual weaknesses are often the inextricable partner of strengths, and that individuals can want things to be different and still want to be themselves. It includes the understanding that some neurological differences are disadvantageous, either inherently or in interaction with the environment, and could benefit from correspondingly targeted intervention.

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Ianthe Belisle Dempsey Media Manager

Ianthe is an Autistic self-advocate living in Chicago. Xe has been an outspoken anti-oppression activist for the past decade and has a degree in theatre/film studies and Russian history from Illinois State University. Their work centers on using technology, design, and language to increase visual and cognitive accessibility of both print and digital resources. Ianthe has had pink hair for the past 9 years and has had extremely strong opinions on fonts and typography for even longer. She has no intention of changing either of those anytime soon.

My Child Has A Disability What Will Her Education Be Like This Year

Public schools are obligated to teach millions of students with disabilities. But as learning moves online, many services that parents fought for are at risk.

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When our younger child received an autism diagnosis at 3, my husband and I had no premonition of what fighting for her education would require of her, or of us.

Shes now 9 an enthusiastic and sweet-tempered kid who loves her teachers, classmates and school routines. Since kindergarten, she has been educated at our neighborhood public school, and I think often of what families like ours owe the activists who fought for disabled children to receive the education they deserve. As of the 2018-19 school year, 14 percent of public-school students nationwide received special-education services under the Individuals With Disabilities Education Act. That includes our child, whose learning is guided by an Individualized Education Program, or I.E.P., which tracks her learning and her needs, outlining the services her school is legally obligated to provide in order to give her what shes entitled to: a free and appropriate public education, with the support she requires to learn, in the least restrictive environment possible.

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Consideration Of Internal Drives And Experiences

A key principle concerns looking beyond observable behavior to consider internal drives and experiences. An under-appreciation of the sensory and emotional experiences of neurodivergent children can result in attempts to reduce or eliminate natural coping and self-regulation strategies, such as repetitive motor mannerisms or âstimmingâ behaviors . Eliminating such behaviors can lead to children being unable to avoid aversive experiences, calm themselves, or to communicate intense emotions . Moreover, there is increasing evidence that different developmental routes can lead to the same outcome, whereby atypical developmental processes are actually beneficial to that individual’s intrinsic developmental trajectory examples are echolalia and hyperlexia as alternative routes into functional spoken language . Focussing on reduction of the behaviors that define the autism diagnosis fails to consider that these behaviors are the outcome of different underlying neurology and interfering with them may undermine a child’s natural coping strategies and development. Early interventions should therefore work with the child’s developmental trajectory, as well as with their natural way of learning .

The Autistic Self Advocacy Network Strongly Condemns The Association For Behavior Analysis International

The Autistic Self Advocacy Network strongly condemns the Association for Behavior Analysis International for their decision to feature the Judge Rotenberg Center at their 2019 annual conference. The JRC is the only institution in the country to use electric shock devices for behavior modification on students with intellectual and developmental disabilities, a practice which has been classified as torture by the United Nations. ABAIs decision to give JRC a platform at their conference reflects a continued pattern of complicity in the torture of the very population that they claim to serve. Furthermore, the JRCs presentation at this conference specifically focuses on the merits of the electric shock device. This means that ABAI is more than complicit in the abuse taking place at the JRC: they are actively endorsing these practices.

ABAI must condemn institutions like the JRC that explicitly torture autistic people.Furthermore, ABAI must examine its own history and practices that contribute to the abuse that autistic people face. Only by looking at their own ethical framework, and honestly confronting what they have enabled to happen, can ABAI begin to make amends to the autistic community. The first step to making that happen is an apology, and a commitment that ABAI will no longer associate with the JRC.

Greg deGiere, Civil Rights Coordinator, The Arc of California

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Dean Strauss Communications Associate

Dean is the Communications Associate at the Autistic Self Advocacy Network. His background is in media and design with a focus on civic media, queer and disability representation, and digital media. He has a degree in Civic Media from Columbia College Chicago. He spends his free time with his dog, Stitch.

Avery Outlaw Deputy Director Of Operations

Avery Outlaw is ASANs Deputy Director of Operations. While studying Disability Studies and Advocacy, Avery was president and founder of the neurodiversity student group and advocacy chair for the disability student group, in addition to planning and coordinating a program for incoming neurodivergent students at the College of William & Mary.

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Meredith Bartley Communications Coordinator

Meredith Bartley is a Communications Associate with an interest in accessibility, the social model of disability, and storytelling. She has a BA in Film & Media Arts from American University and a Masters in Disability Studies from the University of Leeds thanks to the Fulbright Scholar program. Shes also a huge fan of womens soccer!

Emphasis On Strengths Pleasure And Well

Interventions should respect and enhance those things that bring happiness and joy. Passionate interests can bring pleasure and relaxation through repetition or intensity of immersion in tasks, behaviors or objects . Predictable access to preferred activities not only decreases expressions of negative emotions but also can provide opportunities for expertise and genuine social bonding . The adoption of a positive psychology and strengths-based stance refocuses intervention efforts away from reducing deficits and toward enhancing those activities or skills that naturally lead to learning, social connection, and well-being. Intervention efforts should leave alone unconventional characteristics that cause no harm to self or other, such as a monotone voice or preference for solitude. Lifespan research into the childhood factors that are associated with long-term well-being will enable us to boost these important factors through early intervention .

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Working Towards Racial Justice In Asan And The Autistic Community

Over the last few months, the autistic community has had painful and necessary conversations about long-standing issues of racism within our community. Many BIPOC autistic advocates have spoken out about their experiences of racism, exclusion, and underrepresentation in autistic communities and in organized advocacy. And many of our community members have reached out to ASAN, urging us to do better to center the needs, experience, and leadership of autistic people of color in every part of our work. These conversations are vital to creating an equitable, anti-racist autistic movement the movement that our BIPOC autistic community members deserve.

We are listening, and we are grateful to our BIPOC community members who are speaking out. Some of our BIPOC community members have faced harassment after sharing their experiences of racism or criticisms of ASAN. We unequivocally condemn this harassment. BIPOC autistics are sharing their experiences and raising concerns because they want our community to move towards justice. That is self-advocacy in action.

We recognize that this process will be ongoing and require constant learning, reflection, and changes to how we approach our work for many years to come. We are grateful to everyone who has taken the time to reach out to us with your concerns, feedback, and suggestions. Thank you for helping our organization, our community, and our movement live up to our values.