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April 2021



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Archive for April, 2021

More and more autistic students are entering higher education, but they often face barriers to success, with a lower graduation rate than non-disabled students. Some colleges have created programs for autistic students in order to address these barriers — but these programs vary widely, and are often created without the input of autistic people ourselves. How do autistic students define success for ourselves? How can colleges and universities address the barriers that autistic students face? We address these questions and more in our new white paper “Benchmarks to Inclusion: Creating Core Principles to Facilitate Autistic Student Success in Higher Education.”

For this white paper, ASAN brought together autistic college students to discuss what success looks like for autistic students and how colleges can help them get there. “Benchmarks to Inclusion” unpacks barriers to success, looks at how those barriers can be addressed, and lays out ten core principles to make higher education more accessible to autistic students. A summary of “Benchmarks to Inclusion” is also available in three formats: an academic summary aimed at researchers and professionals, an Easy Read factsheet that uses pictures and large text, and a Plain Language version without accompanying graphics.

Everyone deserves an equal chance to experience higher education. Right now, autistic students face barriers to their success — and they know better than anyone else what steps colleges and universities can take to dismantle those barriers and create truly inclusive communities. We hope you’ll check out these resources and share them with people in your life who might find them useful.


COVID-19 changed the way we live. We do things differently to stay safe from COVID-19. We stay in our homes a lot. We have to wear masks when we go out. It can be harder to get the services we need. How will things get back to normal?

The COVID-19 vaccine will help!

The COVID-19 vaccine is a shot that keeps people from getting sick with COVID-19.

COVID-19 is especially dangerous to people with intellectual and developmental disabilities — but too often, the facts about COVID-19 are not shared in ways that are accessible to us. That’s why ASAN has released this video about the COVID-19 vaccine. This video is available in both English and Spanish and answers questions like:

  • Why should I get the COVID-19 vaccine?
  • What will getting the vaccine be like?
  • Is the vaccine safe?
  • When can I get the vaccine?
  • Do I still need to wear a mask after I get the vaccine?

In English:    https://www.youtube.com/watch?v=KHgCKyNtzDY

In Spanish:    https://www.youtube.com/watch?v=cff3iKinxnw

Videos not showing up for you? View them here.

We also have a plain language factsheet about the COVID-19 vaccine. It is available in English and Spanish. You can find it here!

We hope that by learning more about the COVID-19 vaccine and sharing this video, everyone can do their part to beat the virus and keep our community safe.

ASAN is pleased to commemorate the 10th annual Autism Acceptance Month this year. Over the past ten years, autistic advocates have transformed our society’s conversation around autism — but much remains to be done before we can truly fulfill the promise of autism acceptance.

Autism Acceptance Month was created by and for the autistic community to change the conversation around autism, shifting it away from stigmatizing “autism awareness” language that presents autism as a threat to be countered with vigilance. Ten years ago, when Autism Acceptance Month started, advocacy organizations run by non-autistic people spoke openly about working towards a future in which “autism is a word for the history books.” In contrast, autism acceptance emphasizes that autistic people belong — that we deserve welcoming communities, inclusive schools and workplaces, and equal opportunities. In the last ten years, we have seen real progress. Many autism organizations run by non-autistic people initially resisted “acceptance” language; over time, some of them have come to adopt it. We welcome this change.

However, acceptance is an action, and it goes beyond changing the language we use. In order to truly practice autism acceptance, autism organizations must also change how they think about autism, and how they work to represent autistic people. Working toward acceptance means recognizing autistic people ourselves, not just our family members, as a core constituency. It means including autistic people in meaningful leadership positions throughout an organization — on staff, in senior leadership, and on the board. It means aligning advocacy  and research priorities with the priorities of the autistic community. Advocating for things that autistic people routinely describe as harmful, such as Applied Behavioral Analysis, institutionalization, or research on “curing” or preventing autism, is not autism acceptance. Autism acceptance means standing up against those who promote debunked anti-vaccine rhetoric, attack self-advocates, or work to expand segregated settings like sheltered workshops and institutions. 

Autism acceptance means respecting the rights and humanity of all autistic people. It means centering the perspectives and needs of autistic people with intellectual disabilities, nonspeaking autistic people, and autistic people with the highest support needs — not by speaking over them, but by listening and looking to them as leaders. It means fighting to ensure that the universal human rights of all autistic people are respected, including and especially the rights of those autistic people with the most significant disabilities. And autism acceptance means recognizing the ways ableism and racism interact in our society, following the leadership of autistic people of color, and making anti-racism a core part of our work. In particular, while police violence continues to threaten the lives of Black autistic people, some autism organizations focus on police training as a solution; this is ineffective and ignores the role racism plays in police violence, rather than reducing the power of police to do harm.

We welcome the necessary and long-overdue language changes increasingly being made by other autism organizations. But without understanding acceptance as an action, autism organizations led by non-autistic people will continue to lag behind the rest of the developmental disability community when it comes to reaching the goals of community living and inclusion. It is past time for parent- and provider-led autism organizations to make real, structural changes, and join self-advocate-led organizations in working to make acceptance more than just a buzzword.

It isn’t just autism organizations that need to put acceptance into practice. ASAN was glad to see recent improvements to the Autism CARES Act, including increasing the number of self-advocates who are members of the Interagency Autism Coordinating Committee (IACC). However, we need true parity on the IACC, and a rebalancing of research funding to align with the needs of autistic people ourselves. We applaud the White House urging the public to “learn more about the experiences of autistic people from autistic people,” in this year’s proclamation for Autism Acceptance Day. Still, there is much more to be done. We will continue to work to ensure that autistic people have equal rights, opportunities, and access — in health care, education, housing, employment, and throughout our communities. 

We have made real progress over the past ten years of recognizing Autism Acceptance Month. The conversation about autism has changed, thanks to the hard work of the autistic community. But there is more to be done, and words must translate into action. As autistic self-advocates have said from the beginning, we must move beyond acceptance — to representation, celebration, and liberation. Acceptance is not the end goal. It is the baseline, a call to do better, the starting line of the marathon. We can and must go beyond that starting point and run the race, even if we cannot even imagine the finish line. Only by continuing to move forward can we create the world our community deserves.Support our work

The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!

new flowers
Dear friends, This has been a difficult month for many of our community members. We began the month with the virtual vigil for Disability Day of Mourning, where we honored members of our community killed by their parents or caretakers. As we do every year, we read the names of the victims and mourned. Likewise, we mourn the victims of the March 16th shootings in Atlanta, Georgia: Soon Chung Park, Suncha Kim, Xiaojie Tan, Yong Ae Yue, Hyun Jung Grant, Delaina Ashley Yaun, Daoyou Feng, and Paul Andre Michels. We continue to stand in solidarity with our Asian American community members. The increase in anti-Asian racism over the past year is a call to action for us all — we must demand justice and dismantle systems of oppression. These acts of violence come after a year of the COVID-19 pandemic, which has disproportionately affected people of color, especially people of color with disabilities. Black Lives Matter protesters continue to call attention to the ongoing crisis of police violence and anti-Black racism.  And while we welcome the release of Matthew Rushin from prison this week, his incarceration is a reminder that we must fundamentally change our justice system. As advocates, we must make sure that our solidarity does not fade away when the news cycle moves on. We must work to end systemic racism, and be proactive about fighting for the safety of everyone in our community, every day.  As always, we’re thankful to have our disability community working for change alongside us. Thanks to your advocacy, this month Congress passed the first COVID relief bill that includes emergency funding for home and community-based services (HCBS), including funding that can be used to move people with disabilities out of dangerous congregate settings. This is a huge victory for people with disabilities — but more work is needed to address systemic factors that have made COVID-19 so dangerous for people with disabilities to begin with, including Medicaid’s institutional bias. This makes the discussion draft of the HCBS Access Act (HAA), introduced this month, especially welcome. The HAA would build on the promises of the Americans with Disabilities Act and the Supreme Court’s Olmstead decision and provide the Federal Medicaid resources necessary for states to fulfill those promises. We look forward to the process of moving the HAA from a discussion draft to the law of the land. A one-pager about the The Home and Community-Based Services Access Act can be found as a PDF here. We also applauded the reintroduction of the Charlotte Woodward Organ Transplant Discrimination Prevention Act this month. This bill, which evolved from ASAN’s model legislation to prohibit organ transplant discrimination, would clarify the rights of people with disabilities to be free from discrimination when seeking life-saving organ transplants. Both this bill and the HCBS Access Act are a result of years of advocacy from our policy team, our nonprofit partners, and grassroots advocates in every state. We’ve been keeping busy with new resources and toolkits. This month, we introduced a new white paper outlining ten core principles to make higher education more accessible to autistic students. A summary of the research is also available in three formats including plain language and Easy Read, as part of our ongoing dedication to making research accessible to everyone. We also debuted our new toolkit on managed long-term services and supports (MLTSS). Good MLTSS programs can be the gateway to independent living in our communities. The toolkit, in Easy Read and plain language, can help self-advocates understand what these programs are, how they’re made, and how we can make our voices heard! And we released new cognitively accessible resources on the COVID-19 vaccine: an animated video and an Easy Read factsheet, both available in English and Spanish. Finally, April is Autism Acceptance Month! We have so many good things in store for you and our community to celebrate acceptance, accessibility, and neurodiversity. We’ll have new resources, an event reflecting on ten years of neurodiversity advocacy, and new merchandise. It’s full steam ahead as we enter April!  Your continued support makes our work this month — and every month — possible. Thank you for everything you do to make sure that when it comes to the policies that affect our lives, there will be nothing about us, without us! Sincerely, Zoe Gross
Director of Advocacy
Autistic Self Advocacy Network
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Employment law changes in 2021
ASAN applauds Congress for the introduction of the Transformation to Competitive Integrated Employment Act (TCIEA). If passed, the Transformation to Competitive Integrated Employment Act would end subminimum wage for people with disabilities, and create new opportunities to help us get and keep real jobs with real pay. ASAN is proud to support this critical piece of legislation. For almost a century, it has been legal to pay people with disabilities less than non-disabled people for doing the same job. People with disabilities, particularly people with intellectual disabilities, have been paid literally pennies on the dollar for our labor. We have been forced to work in sheltered workshops, which isolate and segregate us from our communities. These practices compound the already lower employment rates and significantly higher poverty rates of our community. Disabled people deserve better than this. We all have the right to access good jobs in the community, with the supports we need to succeed. The Transformation To Competitive Integrated Employment act is a key first step to helping us regain our economic power, take control over our livelihoods, and further integrate into our communities. This bill will recognize our rights, and build the infrastructure we need to exercise them. It has been over 80 years since the Fair Labor Standards Act was passed and people with disabilities were excluded from minimum wage protections. It is past time to right this wrong. The Transformation to Competitive Employment Act will bring the change that our community desperately needs. We urge Congress to pass this long-overdue bill as soon as possible, and look forward to working with them to make that happen.
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A multi-racial family holding hands walks on top of a globe. One of the two children points to some birds flying above them. Blue and black text reads "Start Here: A guide for parents of autistic kids"
Too often, when parents find out their kid is autistic, they receive negative messages from all sides. Many resources available to parents stigmatize autism and talk about it as something to be “overcome,” not as a part of who an autistic child is. At ASAN, we’ve heard from many parents of autistic children who wish they’d had a better resource to learn about autism — one that cuts through myths and misconceptions and explains autism from an autistic perspective. And we’ve heard from many of our autistic community members who wish their families had access to that kind of information when they were growing up. That’s what our new booklet, “Start Here: A Guide for Parents of Autistic Kids” is for!   This booklet was created in partnership with the Autistic Women and Nonbinary Network, the Thinking Person’s Guide to Autism, and Little Lobbyists. You can purchase a print or ebook copy, or get it for free on our website here. This booklet will explain: What is autism? What parents should do next Where parents can learn more What good services look like Topics such as self-advocacy, communication, and presuming competence And more! We hope that you’ll read our parent booklet and learn more about what matters to your child, their community, and how to support them. If you know of any parents of autistic people who could benefit from checking out this guide, please pass it on and share widely.  When you learn your kid is autistic, you’re also learning that they’re part of a larger community of autistic people. Your kid has a lot of people on their team, so we wanted to give you a chance to learn from their community. This booklet was made thanks to the generous support of Anthem.