By Dr. Noor Syed, Director of CAARES and Susan H. Turben Director of Autism Advocacy

Note: This article will use both identity- and person-first language (i.e., autistic person vs. person with autism). Person-first language has been historically used, but a growing preference for identity-first language has been expressed by the autistic community. We have included both to be as inclusive as possible. We acknowledge and appreciate that appropriate language and terminology continues to evolve.

For the past 52 years, April has been designated as Autism Awareness month around the world. The first National Autism Awareness Month, held in 1970, was a historic event with an important mission of raising awareness of autism globally. It was an important building block for future work and helped to bring autism to the forefront of discussions. While a wonderful initiative, we believe it is time for our communities to strive for more than awareness and engage in action towards inclusivity and equity for autistic people, or those who identify with autism. Instead of awareness as a primary goal, we suggest reframing this month’s focus to advocacy. 

The motto of Autistic Self-Advocacy Network (ASAN) is “Nothing About Us Without Us,” meaning that all autism initiatives and projects must involve autistic people. It has not been uncommon for decisions to be made for someone who is disabled rather than with a disabled person. This is hugely problematic because it assumes values of a disabled person are the same as a person who is non-disabled, and it takes away someone’s right to make their own choices. A core belief of ASAN is self-advocacy, or the ability to take control of one’s own life, which is a civil right owed to everyone regardless of how they identify. ASAN describes the extreme importance of acknowledging that civil rights are disability rights, and disability rights are civil rights; we must all work together to advocate for the rights of all communities who have been challenged, including the disability and autistic communities, in our fight for equity.

The Center for Autism Advocacy: Research, Education, and Supports (CAARES), previously called the Center for Autism Inclusivity, changed our name in November 2021 to better reflect our value of working with autistic students and colleagues in driving forward our initiatives. Advocacy in our work at SUNY Empire represents partnership and learning from autistics and people with autism so that we can engage in work that is representative of autistic student and community priorities. Based on collaboration with the autism community, CAARES’ is committed  to building universal resources within SUNY Empire to create an inclusive higher education environment for all students. We will focus on providing free and very low-cost supports  that are aimed at fostering an equitable environment for every student and person with a disability, including autism.

CAARES holds advocacy and partnership as tenets of our work, and invites you to reach out to us at autism@esc.edu with your suggestions and feedback. Please check out a CAARES-hosted Reason and Respect discussion, held April 4, 2022, that centered on the importance of neurodiversity affirming practices in the workplace here: https://sunyempire.edu/president/reason-and-respect/. In this presentation, we heard from autistic panelists about what businesses can do to create a more inclusive workplace, and how higher education can support autistic students in finding gainful employment. You can also read our white paper on the same topic, scheduled for publication April 11, 2022. We hope everyone will take some time this month, and in all months, to celebrate advocacy and rights for all people—including disability rights!