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Autism Awareness Day has been observed internationally on April 2 since 2007. This day is marked by various campaigns of differing scale that provide information about autism from the perspectives of people who have diverse relationships with autism, from professionals to parents to allies to autistic advocates. This year we are adding our own message to the mix as late-diagnosed autistic adults, and that message is simple: Awareness is not enough.
Awareness is simple and fleeting; it is merely the beginning of the journey. When working therapeutically with autistic clients and their loved ones, we must start from a place of building awareness and then quickly move on to promote acceptance and understanding. The act of being aware does little to enact change in and of itself. 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.
There are varying standpoints from which people form perspectives about autism and autistic individuals. For example, the medical model, which is dominant in research and clinical spaces, pathologizes the way in which autistic people differ from non-autistic people through words such as “disorder," and tends toward intervention to address “deficits," which can include teaching autistic people to adopt non-autistic ways of being in the world. This is at odds with the concept of neurodiversity, embraced by many autistic advocates, which acknowledges the collective strength that comes from natural variation in human brains and, thus, lends itself to championing support and accomodations for those who diverge from the norm, rather than attempts to “cure” or “normalize” autistic people.
These many and varied perspectives, that are often controversial and conflicting, highlight how important it is that we reflect critically on available information and seek out alternative viewpoints so we can ensure that we make informed decisions about the way we view autism and autistic individuals. It is easy to find ourselves inadvertently aligned with a perspective in discord with our values because we have not stepped back to reflect on the bigger picture.
It is all too tempting to read messages, such as those in this post, and distance ourselves from any discomfort that might arise by saying to ourselves, “But I am accepting,” or, “This doesn’t apply to me; I am not that kind of professional,” or, “I am doing what I think is best, and that is enough,” without genuinely interrogating our deeper beliefs and attitudes or reflecting on whether our actions are consistent with values of acceptance. We ask that you hold your beliefs lightly, explore them with curiosity, and be open to new perspectives.
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. 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. More broadly, we implore 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.
Most of all, on Autism Awareness Day, we want to reach out to those in our community who are working tirelessly to enact change. It is easy to become fatigued by advocacy and activism, and despondent when our efforts appear to yield little result. History reminds us that change does not happen overnight, nor does it occur in a vacuum resulting from the work of one person alone. Real change comes from uniting rather than dividing. 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.
