Each year, the month of April has been designated as National Autism Awareness Month, and the date of April 2nd is World Autism Awareness Day. These events have been brought into being by various autism support organizations, such as the Autism Society of America; and they aim to promote awareness, inclusion, and self-determination for autistic people.
I’m preparing now for my social media feeds to fill up with messages exclaiming support by wearing ribbons, installing blue light bulbs, and telling feel-good stories about instances where a neurotypical person or group found a way to include someone with autism in their world.
I appreciate the intention these people have when they declare their appreciation. I know they mean well. But each year I grow increasingly uncomfortable with the disconnect between these messages and the true understanding of what it means to have autism in one’s life, whether that is yourself or someone you love.
First, the whole “Light it Up Blue” campaign by Autism Speaks is a branding campaign aimed at serving that organization, and not a cooperative effort at true understanding. Autism Speaks has spent multimillions of dollars to identify the needs of the autism community such as the lack of inclusion, the financial impact, and safety issues. But they spend nothing on direct support to the community. The say offensive things about autism (For example, “These families are not living. Merely existing.” – Suzanne Wright, co-founder of Autism Speaks). I appreciate their legislative advocacy work and the role they play in funding research; they also have some good tools on their website for identifying resources and understanding the diagnosis. But many autistic individuals have trouble identifying with Autism Speaks’ mission because of their funding choices and their focus on neurological “deficits”, “cures”, and the “global health crisis” that is autism, suggesting a lack of acceptance on their part of the community of autism. Out of respect to those with autism who feel that Autism Speaks does not speak for them, I choose not to “Light It Up Blue”.
Next, let’s discuss the feel-good stories. You know the ones… maybe the popular high school girl invites her autistic classmate to the prom (here’s one of those stories, and here’s another, and this one from a few years ago; and here’s one about homecoming, it’s evidently pretty trendy to do this). I also see stories about autistic teens being allowed to play in their first organized sport—usually the last game of the season, or the last few minutes of a game when the outcome is already clear—and to everyone’s surprise or as a result of their collusion, they score (read some of these stories here or here). These tales, while enjoyable to read, are also patronizing. They are only news because of the assumed inability for autistic individuals to access their world fully without neurotypical peers making exceptions to their usual choices.
Here’s the reality of autism. In the last year alone, my experiences parenting a child with autism have included the following: Sitting on the floor in Target for almost an hour while Cheeks screamed, punched, and banged his head out of frustration and anxiety; and only one person in that time asked me if I needed help (it was not a staff member), although probably a dozen people entered the aisle and walked away in avoidance. Spending thousands of uninsured dollars on therapy, tutoring, and legal support to provide Cheeks with the same opportunities as his peer group. Studying special education law and individualized education plans for hours upon hours in order to provide Cheeks with the “Free Appropriate Public Education” (FAPE) guaranteed to him under Federal law, but which is not easily obtained without constant vigilance. And in recent weeks, I am investigating why Cheeks has not been invited to participate in field trips and other educational school activities offered to the rest of his grade level, which is leading to increasing isolation and self-containment in his school environment.
Awareness should have been established by now, so let’s agree that it’s not the right word for April at all. Acceptance and appreciation are the true goal. My wish for those goals is that we stop marginalizing our autistic students, peers, and community members. Stop seeing them as incapable or cognitively impaired. Realize that communication comes in many ways other than verbal, and seek to understand in those ways. Offer empathy rather than sympathy. Realize that their needs may be different from yours, but that a level playing field can be offered. Fair is not when everyone gets the same thing, but when everyone gets what they need.
If you agree with my goals, start by asking an autistic person or their caregiver something about their experiences so that you can begin your journey toward true understanding and appreciation. Ask me here, I’ll answer or I’ll ask Cheeks to answer. I promise you that autistic people and their allies are some of the most amazing individuals you will ever meet, because they face an intolerant world on a daily basis and usually keep their humor, hope, and joy of life anyway. A lot could be learned by most people from that, wouldn’t you agree? We welcome all of you into our community in the same way we want to be welcome anywhere. Come join us, we’ll leave the porch light on for you. But it won’t be blue.