This Autism Awareness Month, We Need More Stories Like Mine
Image Courtesy of Anadolu Agency
By Justin Lamoureux
Most people are well aware that World Autism Awareness Month is coming up.
It’s pretty hard to miss. Once the calendar turns from March to April, social media quickly becomes adorned with autism-related content: everyone’s Facebook feed is marked by a steady flow of updated profile pictures containing frames that read “Light It Up Blue” or “Different, Not Less.” Instagram stories become dominated by posts talking about characteristics of the disorder itself.
I have to admit, the marketing is rather impressive. But the highly commercial publicity misses the point: people with autism don’t question whether you recognize their existence. What they do question is society’s commitment to understanding their diagnosis, and how it impacts them in daily life.
Extravagant displays of blue and a laundry list of “facts” about autism have done little to actually improve the lives of people on the so-called autism spectrum. In fact, such a campaign has only exacerbated social stigma by leading to the dissemination of false narratives and outdated perspectives regarding the condition itself. This makes an autism diagnosis harder to overcome, as it fosters a narrative that being on the spectrum should be a source of shame.
But here’s what concerns me above all else: the spearheading of such a cause by faceless corporations—or charities that act like corporations—deprives many autistic people of the chance to elevate their own voices. It overshadows potentially inspirational stories, which only makes it harder for everyone to comprehend what being on the spectrum is really like.
If you didn’t already know that I am on the autism spectrum, I won’t hold it against you.
It can be rather hard to tell – especially at first glance. I don’t possess many of the traits considered stereotypical of autism. My speech isn’t obviously impaired. I don’t have uncontrollable tantrums in public… at least, not anymore. I don’t incessantly flap my hands or rock my body, either. In that sense, I’m probably one of the last people you might suspect was autistic.
But I still have many characteristics that are routinely associated with autism; most are simply too subtle for the naked eye to perceive. For example, I am a very anxious person: if my day involves unstructured and unpredictable situations (e.g. a change in the schedule or lack of concrete plans), I can easily become quite stressed and fail to complete the task I’m trying to accomplish. I have a relatively short attention span, too: I cannot stay seated or pay attention to something for very long before I start to feel restless and fidget with myself or something on my person. There is also my highly unusual and unbalanced diet: sensory issues make the tastes, smells, colors, and textures of many foods unbearable to me.
If we are friends, I recognize this might be a lot to wrap your head around. Please don’t take it personally if I have never told you about my diagnosis: I’ve always found autism hard to discuss. In fact, that is why I’m publishing this article: to me, writing is an incredibly satisfying means of telling a story or sharing an idea that resonates with others.
The reason why I’m often self-conscious about my condition is that the social stigma surrounding autism is very real, and I’ve found myself on the receiving end more than I care to remember. People often become far less comfortable with you after learning that you’re autistic. In childhood and adolescence, this can easily translate into seemingly perpetual exclusion or alienation by peers. Nobody wants to be seen with you. In situations like these, “guilt by association” is much too often the rule. When I was seventeen, a girlfriend broke up with me because my autism was “too much” for her to see past. This is something I’ve never before admitted publicly: it’s one of the deepest embarrassments I have ever known.
There is always a certain level of discomfort or even fear that comes with divulging your autism to people. This is the case even if you are lucky enough to be in a community filled with people who genuinely love and accept you, as I have found at Catholic University. Still, I truly believe the best way to foster a better understanding of life with a diagnosis like autism is to discuss your own experiences candidly. With Autism Awareness Month on the horizon, I can’t think of a better time than now to start this conversation.
Truth be told, my stories about growing up on the spectrum include too many details, memories, and takeaways to share in a single article. That’s why I will be contributing a series of articles to the next few editions of The Tower, in which I provide an in-depth look at my journey as an autistic youth.
I hope you’ll join me.
