Today is World Autism Awareness Day – and it’s also my first Autism Day as an officially diagnosed autistic person.
It took me a long time to get here.
In elementary school, my parents had my hearing checked by an audiologist. I didn’t consistently respond to my own name. I didn’t talk as much as I should’ve at school. I was painfully shy and had severe separation anxiety. I read books, alone, at home and at school, and I did not make an effort to socialize with my peers.
In high school, I thought I might have schizophrenia – abnormal social behavior, and reduced social engagement and emotional expression all sounded like me. I didn’t hear voices or lose touch with reality, but I was often confused and I just didn’t understand people. I knew something about my brain was different than everyone else’s. But I kept all that to myself, and tried to be normal, by copying the behaviors and mimicking the speech patterns of whoever was my best friend at the time.
In college, they thought I was bipolar. I was “abnormally” happy, energetic, or irritated, then depressed, crying often “for no reason,” and making poor eye contact with people. I didn’t sleep much. I made “poorly thought out decisions with little regard to consequences.” The mental health specialists at Wellesley saw no reasonable explanation for my “mood swings.”
After college, I decided to teach Special Education. I empathized with my students, especially the ones who struggled so much but still wanted to learn so badly. I saw myself in them, especially the autistic ones. And as I read more and more about autism, especially autism in women and girls, the more familiar it seemed, the more it explained my childhood awkwardness and social difficulties, the more my life started to finally make sense.
And now, after diagnostic interviews and psychological assessments and conversations with a clinical psychologist who specializes in diagnosing autism in intellectually-able adults, here I am. Officially on the spectrum. Learning more about myself. Recognizing and acknowledging the anxiety that has made my life so hard for so long. Figuring out what adjustments need to be made to make everyday life more bearable.
Diagnosing autism in girls, and especially women, is so hard because we get so good at hiding almost everything about our autism.
I act how the people around me act so I can fit in. I watch TV and movies and repeat catchphrases and conversational responses so I can practice how to talk to strangers. I escape into TV and movies and musicals and books and video games because these stories follow rules and character motivations are explicit and everything just makes sense. I prefer writing because it’s so much easier for me than talking. I hide my anxiety so I don’t have to figure out how to explain to people why I’m so anxious. I only flap my hands about friends. I only obsess over things when I’m alone. I don’t ask questions when I don’t understand something because I don’t want to stand out – I just file it away to look up later. I Google everything I don’t understand. I’m a master at nodding my head and pretending I get it, when I really didn’t process a single thing.
I pull it together for 8 hours every day so I can go work at my first real adult job, and then I go home and do my best to recover, so I can do it all over again the next day. Pretending to be “normal” is hard work.
Thankfully, there are also many little things about my autism that people just tend not to notice.
I buy multiple sets of identical pants and the same shirt in different colors, so I can wear the same thing to work every week (it’s comforting). I still eat like a picky child, but that’s the fashionable hipster thing now, to order food a special way. I compulsively straighten shelves at grocery stores and eat my Skittles and M&M and chips in a precise order, but in a way that doesn’t call too much attention to myself. I line things up at home and on my desk at work, and I don’t like to certain things (like toys) to touch each other. And you really have to spend some time with me to notice that I hardly initiate conversations, it doesn’t always occur to me to share things with others, and I repeat so many random things.
I could go on and on.
I could write an entire book about this.
I just might.
But the point of this all was to commemorate my first Autism Day by sharing some of my story.
Every person with autism has a different story. We’re all good at our own special things, and not so good at other things. And just because some of us are able to act like a “normal” person for a few hours out of the day, it doesn’t mean that our autism isn’t real or isn’t a big deal.
So be gentle with the “odd duck” in your life. They may have autism, or anxiety, or both, or something else entirely. But they’re still human. They still have feelings. And they still probably want to be a part of other people’s lives – we just sometimes don’t know how to make social stuff work.
If you want to help, try to make things a little easier for us. Come to us, but still give us time and give us space. Don’t mock our special interests or our weird rituals (they calm our anxiety and make us happy!). Ask us what we’ve been learning about recently (you may have to give us a specific medium to talk about, like movies or video games). Take the time to invite us to social events, but don’t take it personally if we say no. Make places quieter and dimmer, if you can. Make things predictable. Write stuff down! Explain new stuff. Remember we think literally!
Don’t be afraid to comment on our stimming (hand flapping, bouncing or rocking, picking at our skin, etc.) – if it looks like we’re nervous and you’re just checking to make sure we’re okay, then we probably won’t get mad. Unless we’re already mad, then we might not want you to talk about it! It depends, sometimes!
We’ll likely still appreciate that you tried to help, that you care. People with autism are some of the most loving people I’ve ever met. They meet love with love, so if you approach people with differences with patience and love and understanding, then the world will be a better place for all of us.
So Happy World Autism Awareness Day, and Happy Autism Awareness and Acceptance Month! And thank you for taking the time to read all this and learn a little more about autism today! You rock.