I was recently scrolling through Facebook posts when I noticed a post about Invisible Illness Week. The post listed various illness that may not be noticeable to the naked eye. These illnesses covered cancer, autoimmune diseases, mental illness, and autism. Wait, did I just see autism listed as an invisible illness?
Let me make one thing very clear, I do not think my autism or my daughters’ autism is an illness. I will address autism as an illness in my December post. For this article, I really want to focus on autism’s invisibility. We all hear and see the statistics that the autism diagnosis is on the rise. It seems that every day a new figure reveals the true scope of how many people are living with autism throughout the world. My question is, if there are so many of us card carrying autistics, why doesn’t anyone seem to notice? Why are we often invisible?
I obviously don’t mean invisible in the literal sense. I am fairly certain people can actually see me. I mean invisible in the social world. Recently there was a really great television commercial featuring actress Mindy Kaling. In the commercial she thought she was invisible because people seemed to dismiss her presence. She preceded to do a series of crazy (socially awkward) activities because she thought no one noticed she was present.
This commercial, while absolutely hilarious, brought to mind what I often feel like in everyday life. I was not aware and officially diagnosed with autism until my mid-thirties. I did not benefit from social groups, speech therapy, or any type of interventions. Everything I have learned, socially, has been through observation. Over the years I have attempted to compile a list of socially acceptable conversation starters, small talk, and chit chat. The thing is, I really see no need for small talk. It does not naturally come to mind when I start a conversation. I have always marveled at other women because they seem to just know what to say and how to act during the give and take of conversations. I usually stand awkwardly outside of groups of women pretending to be interested in something else (sometimes my phone).
Many autistic women and girls are great at mimicking behaviors of those around them. This may be one reason why autism in girls is often misdiagnosed or missed altogether. I have taught myself to act like other women in unfamiliar and anxiety producing situations. The trouble with this is, I am not normal. It takes an extreme amount of energy and focus to remember how to act “normal.” Sometimes, honestly, I just don’t want to act like I am someone else. So there I stand, invisible, trying to pretend I am uninterested in social interaction.
The morning bus stop is often the place where I feel the most invisible. It usually consists of all women, standing in small groups, chattering away about their fitness routines or latest nail color. I am not saying there is anything wrong with what they are discussing, I just don’t quite know how to jump into these types of conversations. I assume over the years people have noticed that I don’t usually make small talk, and, as a result, I end up standing alone outside of the group. I feel invisible. I feel awkward.
I dread approaching social situations. Don’t get me wrong, it is very important to teach children on the spectrum how to have conversations. Conversational skills are a necessary life skill in the world today. But these skills will never be natural. They are scripted. As most people on the spectrum know, we enjoy talking about things that the typical world often finds uninteresting, strange, or too intense. We want to be included in social situations and we know we do not always fit in with the rest of the world. We often feel like everyone is speaking a language we don’t understand. From my point of view, we are often unnoticed, invisible.
As a parent of two daughters on the spectrum, I strive to help them with conversational small talk. But I also let them be themselves when they are at home with their loved ones. While it is important to teach social skills, I give them a safe environment to just be themselves. I let my daughters talk about their interests. I show enthusiasm and excitement for the topics they want to talk about. And I am not critical of their speech patterns or lack of appropriate social conversations every minute of the day.
Remember to love your children for who they are becoming and make sure they know they are important. No one should feel invisible. Nobody should sit outside of life because they are different. We are not invisible.
Read about Megan
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Mona Pereth says
October 17, 2018 at 11:28 amYou speak of “the” social world, as if there is only one. There are many subcultures which have somewhat different social norms.
In my opinion, autistic and autistic-like people need to build our own local social groups, of a variety of different kinds, that can develop their own social norms that are more natural to us. If/when enough such groups are formed in enough places, they will eventually evolve into a network that will also make it much easier for us to find congenial jobs, etc.