I wake up and I’ve barely opened my eyes when I feel the tension in my stomach. I take a deep breath and push my blankets all the way down; they have to be all the way past my feet for it to feel “right.” I get up and walk over to turn on the middle light switch and then turn it off again before turning on the one on the left that lights up this room. This is what some people call a “ritual.” I don’t do it because I enjoy it. In fact, rituals can become mentally exhausting. I do it because the world around me feels out-of-control right now but I can control this one little thing and so I don’t feel overwhelmed.
When I was a little girl, the rituals were much more frequent and much more complex. They had to be because back then the world was almost always overwhelming. Lights were too bright. Sounds were too loud. I didn’t know what to say to other people, but then, they thought I was weird anyway and if I was lucky, they just ignored me.
I’m not a little girl anymore. I’m 48-years-old and over the years, I learned many things: how to have two-way conversations, how to figure out if someone is not interested in what you are saying, but most of all … how to cope. I know what to do now when the lights are too bright and the sounds are too loud. I know how to self-regulate and how to decompress. Normally, I get through life rather well at this point and I don’t need my rituals anymore. But on days that are very stressful, I have to work a lot harder. April 1st is always a very stressful day.
April is the month that neurotypical people have chosen to make others “aware” of autism. That means that for the whole month, Autistic people like me will be inundated with messages about the “tragic autism epidemic” that is “stealing” children away from “grieving” parents. People will discuss the critical necessity of finding a cure, or better yet, a pre-natal test, so that people like me will never be born. And some groups will ask for money so that they can “help” us by doing studies about why we are what we are. It’s always hard to be devalued, painful to be called a “burden on society,” but the worst part is that people seem to have forgotten to be “aware” of something very important … us.
I have many wonderful Autistic friends and during April, we try to support one another and work together to remind people that we are not a “tragic epidemic,” but rather individual human beings, with unique thoughts and feelings, and we understand more than people think we do, whether we communicate with speech or not. We want people to know that when they discuss autism, they are talking about Autistic people. Many of us can read. Most of us can hear. All of us want to be afforded dignity and we all feel pain, just like other people do.
We want people to remember that we grow up and become adults and we need different things than kids need: access to good employment, medical care, community support and housing. We try to spread the message that people are already “aware” of us; we need people to accept us, respect us and give us the support we need to thrive throughout our lives, not just when we’re little.
I also have many wonderful neurotypical friends. During April, many of those friends thoughtfully try to offer me additional support. Unfortunately, sometimes they mistakenly assume that participating in the “Light Up Blue” campaign by Autism Speaks is a good way to do that. While I appreciate the thought, like many Autistic people, I do not support that corporation. That particular group may be well known, but it has a long history of demeaning, devaluing and attempting to silence Autistic people. Most people don’t think to actually ask us, but if they did, many of us would tell them that Autism Speaks does not speak for us. Furthermore, wearing blue and telling others to be “aware” of autism, while destroying Autistic self-worth by calling us a “burden on society,” will simply NOT help us in any way.
So, what can you do to help? If you want to do something positive and truly supportive for Autistic people in April, please lobby your congressperson to not touch the Medicaid that many of us rely on and to continue to provide educational supports that we need. Also remembering that this a tough month for many of us, and being mindful enough to choose what message you share carefully, would be very much appreciated. Thank you very much.
Nadine Silber is a writer and lawyer who lives outside of Philadelphia.