April is Autism Awareness Month, an initiative focused on promoting greater inclusion of people with autism, and increased understanding of the condition. In an essay published this month on Psychology Today.com, Dr. Erin Bulluss and writer Abby Sesterka discussed why autism awareness, while important, is not enough in and of itself, and why acceptance and understanding are more crucial. Both Sesterka and Bulluss were diagnosed with autism themselves later in life.
“The act of being aware does little to enact change in and of itself,” the authors wrote. “Sometimes, an increase in awareness of autism in oneself or a loved one can even evoke negative feelings, because awareness without acceptance allows stigma, stereotypes, and negative assumptions to linger beneath the surface and negatively impact how we perceive ourselves and/or others. Until society as a whole shifts from awareness to acceptance, autistic people and their families will continue to be impacted by, and potentially internalize, negative attitudes and stigma that currently prevail in the wider conversation about autism.”
Sesterka and Bulluss also contrasted the “medical model” of autism, which tends to view autism as a deficit and a disorder, with the neurodiversity movement, which emphasizes the strengths of people with autism, rather than their handicaps, shifting the focus away from “normalizing” people with autism or seeking a cure for the condition.
“We urge our research colleagues to move away from the view of autistic individuals as objects of interest and, instead, realize that we can make a meaningful contribution to the discussion,” the authors wrote. “We encourage those in the clinical space to shift their focus from modifying “problems” in the individual to supporting individuals to navigate systemic challenges and create a lifestyle that promotes well-being.” Bulluss and Sesterka also encouraged “schools, community groups, corporations, and others to recognize the value of the autistic community so that we can contribute and participate from points of empowerment and agency.”
Rather than a revolution, the authors advocated for smaller, incremental changes that can have a positive effect over time.
“Real change comes from uniting rather than dividing,” they concluded. “We needn’t seek to move mountains but, rather, to make small changes within our capabilities and spheres of influence. These small acts, cumulatively, can lead to broader reform. If we continue to gently chip away, in whatever ways we are able, we can collectively achieve great things.”