OARacle Newsletter

The need for resources and support in higher education is paramount for autistic individuals who are interested in obtaining post-secondary education. Research suggests that students with disabilities, including autism, graduate with a bachelor’s degree at a rate of 38.8% compared to 60.4% of all college students (Newman et al., 2011). According to the College Autism Network (CAN), there are 104 autism-specific college support programs in the contiguous United States. While this n umber has grown over the past few years, many of the programs require disclosure of diagnosis and registration, which can be a barrier for autistic students who report fear of stigmatization. Further, CAN reported in 2022 that at least half of programs require additional fees beyond regular tuition, which can act as an additional barrier for students.

To address these challenges, Empire State University spearheaded by the Center for Autism Advocacy: Research, Education, and Supports (CAARES), is seeking to incorporate a multi-tiered system of support (MTSS) framework throughout its campus. CAARES works with the wider local community and Empire State University advisory teams, composed of community members, students, professionals, and alumni who identify as autistic or neurodivergent, as well as university employees and data analysis and behavior change professionals who identify as allistic.

The MTSS framework embeds universal supports that allow students to have access to a universal design for accessibility and learning. In other words, evidence-based supports are available to all students at any time. These include email templates, systems processing maps, task analyses, and flowcharts to clarify tasks that can be complex, such as class registration or financial aid. In addition, the institution as a whole absorbs the responsibility of inclusivity, rather than relying on the students to self-advocate for their needs. [Note: Dr. Syed received a 2021 OAR grant for her research project that implemented a multi-tiered system of support (MTSS) framework on the Empire State campus.]

Empire State University is now requiring all employees to participate in annual asynchronous training on supporting autistic and neurodivergent students. In addition, synchronous training is conducted for all faculty and support staff during required meetings. Intensive resources are also being developed and offered for students who need more support than is offered universally. These include a Peer2Peer Social Connection Program, one-on-one consultation for employees and students, and training focused on areas such as making social connections and workforce preparation. All resources created to date are free and accessible for the Empire State University community.

Benefits

Creating an inclusive higher education system that embeds universal support will allow all students to benefit, including autistic and neurodivergent students, without singling out or forcing disclosure. Further, universal support can be a lower response effort and cost, such as embedding strength-based choices for assignments in curricula and having email templates students can use to communicate more easily. A huge benefit of universal support is the cultural shift towards considering disability as diversity, particularly as individuals with disabilities have been historically underrepresented in the higher education population. Access to advanced learning becomes a right to be enjoyed by all individuals, regardless of neurotype.

Challenges

When first implementing this systemic change within Empire State University, CAARES realized the utmost importance of advocacy and allyship or “doing with, not for.” Therefore, ongoing collaboration and communication with autistic and neurodivergent communities, particularly students, is critical in building an autistic-supportive college.

Buy-in with the university community was also an initial challenge. Although many were supportive in theory, some expressed concern about perceived additional effort in supporting autistic and neurodivergent students. As a result of numerous formal trainings and informal discussions that provided background on disability as diversity and offered universal resources and design for learning, we have observed a shift in awareness, acceptance, and ultimately, inclusivity.

Meaningful and Improved Collaborations

It is important to note there is a difference between meaningful collaborations with other experienced neurodivergent professionals versus tokenizing an individual for the sake of saying that a member of this population sees one side or another. For example, effective collaboration comes from articles such as this one, written by an individual with autism who is asked to support an opinion and support findings with data. This mode of representation is different from providing a single experience and stating this as the overall opinion of all individuals with autism or that it represents the field of applied behavior analysis as a whole.

The challenge then comes from ensuring that the individual with autism’s voice is heard and respected much like any other professional’s would be. It is important for organizations to uplift and value the expertise of an individual with autism rather than only using them to promote their own beliefs. Consider where an organization stands and if their viewpoints match the actions they perform after the fact. Appropriate collaborations come in many forms, but it is important to remember that the best way to determine the difference between ensuring autistic voices are being provided appropriately is by determining if the collaboration had positive results for the autistic and neurodivergent population.

Welcoming diverse voices and identities to contribute to the planning, implementation, and continued oversight of the autistic supportive college initiative will, we believe, create a sustainable cultural shift in how we support autistic and neurodivergent students in higher education. Rather than putting the burden on students to change, the responsibility to build an inclusive environment should be on the higher education institution as a whole. Colleges, universities, and post-secondary environments can adopt low response-effort universal supports that are ultimately affordable and lead to increased inclusivity and cultural understanding of disability as a diversity issue. Autistic and neurodivergent Empire State University students have shared that they now feel a sense of belonging within the institution and are excited to build an increasingly accepting environment for themselves and future students.

Dr. Noor Syed (she/her) is an assistant professor of applied behavior analysis (ABA), clinical coordinator, and founding director of the Center for Autism Advocacy: Research, Education, and Supports (CAARES) with SUNY Empire State College. She has also been named the Turben director of autism advocacy with CAARES. In addition, Dr. Syed coordinates a Master of Science program in ABA through SUNY Empire. She is the director of Anderson Center International, an adjunct doctoral advisor in ABA with Endicott College, and a certified general and special education teacher. Dr. Syed also serves on the ABA Ethics Hotline and President-Elect of the New York State Association for Behavior Analysis.

Armando Bernal is a neurodivergent board-certified behavior analyst (BCBA) who supports children between the ages of 2 and 18. In addition, he provides autistic consultation, parent and therapist consultation, supervision and mentorship to other BCBAs and therapists. He also speaks on related topics for organizations around the country. He is also the founder of Autism International, an in-home ABA provider, and the distributor of the podcast, “A Different Path.” He hopes to spread awareness and acceptance of autism by supporting children in need and sharing the stories of other individuals with autism.