While sitting alone in the waiting room, I stared at the colorfully painted wooden shapes strung along the wires of the bead maze next to my chair. My clinical psychologist entered the room and handed me a letter to read on my own. I skimmed through the summary of my test results that explained my restricted routines, obsessive interests, and sensory issues, as well as my problems with social interactions and pragmatic communication. When I got to the part that said I "fall diagnostically into the category of Autism Spectrum Disorder (ASD), without intellectual or language impairments," I felt my whole body heating up. I began to break into a sweat as the words slowly blurred on the page.
On some level, I knew what the diagnosis would be. But there's a big difference between expecting news and actually getting it in black and white. The shock didn't set in until the definitive words were staring me in the face. My letter was addressed anonymously "to whom it may concern," ready to be shared if needed to explain my deficiencies to an employer or file a disability claim because I could no longer work.
I had never stepped foot in a psychologist's office until two months before my diagnosis. I wanted to be tested for ASD because I recognized the signs of autism in my 2-year-old daughter and knew I had it, too. He said, "When you go on an airplane, the flight attendants instruct you to put on your own oxygen mask before you help your child put on hers. That's why you're here today." My testing included an hour-long interview and an 800-question personality test. He also gave me a functional assessment test for both myself and my husband to fill out at home to rate the severity of my impairments in the areas normally affected by ASD.
I recognized the signs of autism in my 2-year-old daughter and knew I had it, too.
That day, I found myself sitting (I wasn't comfortable lying) on a black leather couch telling the story of my childhood. I always knew I was different. I was selectively mute as a child, but everyone, including teachers and my parents, told me I was just shy. And I believed them. In my generation, autism wasn't usually diagnosed unless you had a severe case of it. I did really well in school. I even had the option of skipping half of first grade and entering the middle of second grade, an option my parents decided against to help me further develop my social skills with kids my age.
Girls, who are normally less disruptive than boys in early childhood, often go undiagnosed with ASD because they are better at masking their autistic traits. Even girls displaying the same autistic traits as boys are less likely to be diagnosed, according to one August 2012 study. The Centers for Disease Control and Prevention (CDC) estimates that the disorder is 4.5 times more common among boys than among girls. The gender ratio for high-functioning autism, where I fall on the spectrum, is probably closer to 10 males for every one female.
I rarely talked in the classroom, even in most of my college and graduate school courses. But my ability to intensely focus on reading literature as a special interest or obsession eventually led to my doctorate in English. As an adult, I continued to have significant problems with social skills, but I had a sort of awakening when I started teaching in my 20s, which made it easier for me to communicate.
Small talk never came naturally to me, so I learned scripted language to use in each unique social situation.
I learned to be a master imitator in social situations by using my memory of facts and events to compensate for my deficits. I also trained myself to look toward faces and to smile. I was unknowingly hiding my autism. One November 2016 study found that women with autism are better at "camouflaging" their difficulties with social interactions than men on the spectrum. With many years of practice, I learned scripted language to use in each unique social situation. Small talk never came naturally to me. If a friend asks me about my day, I know that it is polite to ask about her day, too. I'm learning that, with my autism, I have trouble recognizing that others have thoughts, feelings, and perspectives that differ from my own.
I'm learning to cope with sensory overload by recognizing my limits. Sometimes I need to escape from the chaotic noise of our dog barking and my three kids screaming while chasing each other around the playroom. My husband will watch my daughters while I take my son for a walk in his stroller. Before my diagnosis, if I were out on a walk, I would usually avert my eyes at the last moment to avoid the awkwardness of greeting other people in the neighborhood. Now, I'm finding the courage to look them in the eye, smile, and say, "Hi."
Realizing I am autistic, even as an adult, helped me make sense of my life before the diagnosis and changed my life for the better. Knowing I have an invisible disability helps me cope with my weaknesses and make better use of my strengths.