The following blog post was contributed by Wendy Katz, who has Asperger’s syndrome, in the hopes that her personal story will raise awareness of the inner struggles of people who live with an “invisible disability” during Autism Awareness Month. Asperger’s is a mild form of autism spectrum disorder.
This post was originally posted on Voices of UCP.
Some Castles Have Deep Moats
You probably know me.
At least you’ve seen me around town. I look just like any other soccer mom after all. I have matched clothes and cared for hair, and I go with my soon-to-be-stepdaughter and fiancé shopping at the mall and to the movies like anyone else. I had affluent parents and a good education. I was quiet and shy but sweet and was in the chorus and the National Honor Society in high school. I went to college and got a job, gave polite smiles to my coworkers in the hall and maybe even chatted you up at a cocktail party. I had a marriage that sadly ended in divorce and survived it stoically. I am sure that you know me, or think you’ve met someone just like me.
But the truth is that you don’t really know me at all. Like millions of others, I have what is called an “invisible disability.” Invisible disabilities are those that one cannot see on the surface. Many intellectual and developmental disabilities (I/DD) fit into this category, such as learning disabilities, mild autism spectrum disorders like Asperger’s syndrome, and mild cerebral palsy. I’m a “Passing Aspie” – one of the ninjas of the invisible disability world. You have to know us fairly well to ever see our truth.
I coined the term “Passing Aspie” (short for Asperger’s). Asperger’s syndrome is a mild form of autism in which a person can speak clearly and has an average–to-devastating level of intelligence, but goes through life with social difficulties and often sensory issues. Even if you think you don’t personally know anyone on the autism spectrum, you have seen “The Big Bang Theory” and understand the portrait of Sheldon that is being painted there.
Passing Aspies are different. We are the people on the autism spectrum that you do not see wearing a visor to avoid fluorescent lights. We have learned to adapt, and honestly I doubt there are any accurate numbers on how many of us are out there because we rarely get formally diagnosed. That said, our inner brains and inner lives share autistic traits, and you cannot know our challenges unless we tell you. So today, in honor of Autism Awareness Month, I agreed to try.
Eyes and Excuses
More likely than not, you have noticed that people on the autism spectrum have difficulties with eye contact and visual recognition. I wasn’t diagnosed with Asperger’s as a child but I spent my childhood at war with my eyes. I have always been (and still am) visually unobservant and often use my other senses to compensate. I am nearsighted in the extreme but do not feel a need to wear glasses because my sensory world is still rich in so many other ways.
I spent my childhood with total face blindness, but I didn’t know what to call it. I never heard the term until I was old enough, through painstaking neural rewiring, to recognize at least the faces of those I saw frequently and the people I loved. (I still can’t recognize familiar actors in movies sometimes if they change their makeup or hair.) I learned to say the things that people expected to hear to explain why I couldn’t make friends in preschool. I was “bad with names” and couldn’t remember them. I was shy. Or, I “didn’t need friends.” Or the “other kids didn’t like me.”
The truth was both more obvious and far scarier: I couldn’t recognize anyone. If I played with a little blonde girl on the playground one day, I had no way of ever finding her again. I had no words to explain this because I was unable to comprehend why this was. I just figured that other children were smarter and better at seeing visual cues. I would try to tell my mother, but I doubt she ever understood the whole truth. I am sure that other children thought I was snobby or weird for pretending like we had never played together before, and so I was lonely.
The eye problem most commonly associated with people on the spectrum is, of course, eye contact, and I have that problem too. People always ask me why I can’t make eye contact. Actually, I can and do force myself to make at least brief eye contact with others as part of my passing act. But extended eye contact is emotionally painful if I am not truly intimate with you. The closest I can get to describing how it feels to me to meet someone’s eyes is to compare it to the feeling you would get if asked you to stare at a stranger’s naked body for several minutes. It feels embarrassing, awkward, invasive and socially wrong. I can hold my mom’s gaze or my fiancé’s (I do see him naked after all), but socially it just feels embarrassing. So I let people think that I am just shy.
In many ways, the hardest part about dealing with Asperger’s both as a child and a passing adult is sensory overload. I use my ears to compensate for my eyes and am better at recognizing people’s voices than faces. I am also a great mimic with an audiographic memory. This came in great handy for school lectures or eavesdropping (I got away with this like you wouldn’t BELIEVE.). But there is a dark side to sensory sensitivity!
I cover my ears while during fireworks and was afraid of the hairdryer until I was five years old. My sense of taste was way over the top along with my sense of smell, causing sensory pain that most of you cannot even imagine. On hot days in enclosed spaces, I would feel that I was suffocating because I could smell the individual odors of every person in the room. All of those different smells mixing together would make me dizzy, but what could I do? I was aware enough to know that no one else could smell what I did and that no one would believe me.
I gag at the bitter taste in vegetables. Needless to say, adults weren’t buying my explanation and accused me of faking it. Fruits have very strong smells that overpowered. me. For nutrition, I had to take vitamins and eat baby food well into the first grade. That ended after a friend told our whole class at school.
But these are only minor challenges compared to some of the invisible demons that come with my invisible disability.
Invisible Moat, Invisible Alligators
I have often been asked about the worst part of being on the spectrum. This is where the monsters come out. Sexual abuse is very common among people with intellectual and developmental disabilities (I/DD), three to four times more likely than for children without disabilities. When you realize that one in every five women is in the U.S. is sexually assaulted as a minor, you can see that many people with invisible and visible disabilities alike are sexually assaulted every day. I was no different.
When I was nearly six years old, my mother hired an ordinary female babysitter to watch me for during the summer while she and my father worked. Unfortunately, the sitter was a predator, and I was in no state to defend myself or report her. I totally repressed the memory for many years after struggling in vain to comprehend what was happening. The pain was right beneath the surface though, and when you can’t speak about your pain or even understand what happened to you, the effect is devastating.
I know you are wondering what kind of person would put their byline on an article that included this detail, and I will tell you. It’s a person determined to break the silence. I had many strikes against me when it came to getting help and healing for my abuse. Questions that parents normally ask children to get them to open up completely went over my head. I didn’t even understand that what I was forced to do was sexual abuse; I saw it as punishment and figured it was normal. And, I lacked the courage and the words to confront any adult’s behavior as “wrong”.
I want to let you know that although it is difficult to know if a person with an invisible disability is being abused, it is not impossible. Look for signs and read between the lines. We are human, and we do feel pain. For example, a scared child that is at a loss for words and calls her babysitter “mean” may be trying to tell you something, especially if she doesn’t verbalize negativity often. You may also notice that under the stress of abuse, the invisible disabilities in your child multiply. From age 6 on, my self-esteem plummeted. I developed claustrophobic behaviors and panicked if I had to wash my hair under the shower. I also spent larger amounts of time alone in various hiding places around my home. In addition to my increasingly apparent posttraumatic stress disorder, I suddenly began suffering from obsessive-compulsive disorder, and began to behave erratically and suffer nightly insomnia. In another child, these would have been extreme warning signs, but because my behavior was somewhat odd to begin with, due to the autism, people let this go as more evidence of my disability.
So what I just described is a far cry from being a Passing Aspie you say. Well, that took many years and a lot of hard work on my part. I focused hard on grounding techniques, which helped me to mentally stay in the room with my classmates and break out of my dissociations. I worked up the courage to make one or two close friends, and as I fought to memorize their faces, the fog in my neural pathways lifted, and I began to see other faces. I practiced friendly facial expressions in the mirror until they felt less awkward. I traded homework help for social comfort.
By high school, my hard work had begun to pay off. New neural pathways took over my brain, and being social began to feel more natural. When I cracked under the stress of completing an extra hard course load with obsessive-compulsive disorder and became clinically depressed, I was finally got the treatment and medication I needed. One of my psychiatrists even figured out that I was on the autism spectrum. It was too late to truly benefit from services at that point, but knowing that I had a real disability and wasn’t just defective as a person helped me to forgive myself. I am proud of the work I did to make my life come together.
I have never been more proud of myself than the day I earned my Masters degree in Social Work and walked across the stage at George Mason University. I held several jobs working in foster care placement, a homeless shelter, and a nursing home and am proud to say that I never once got singled out as an Aspie or told that my work was impacted by my disability.
Am I Magic?
I get asked about “special” talents often. People want to know if I can do magic tricks like multiplying large numbers in my head or know what day of the week November 12th, 2028 will be. The honest but disappointing answer is that I do have a savant talent, and I just told you all about it. Being a Passing Aspie is harder than it looks. I don’t have the genius of many on the spectrum, but being me requires conjuring more strength, endurance and effort than you know. I noticed that unlike a lot of people my age, who typically sleep seven to eight hours a night, I need nine or ten hours to feel rested. I believe that this is the extra energy that my brain uses to filter out the sensory distractions and social challenges so that I can pass successfully.
By the time you notice the horrible beeping noise coming from the microwave at McDonalds, it has been hurting my brain for five minutes or longer. I no longer hear it, however, because my mind subconsciously noticed this immediately, determined that it was enough to make me crazy, and filtered out the noise. Also, the energy it takes me to make casual conversation with acquaintances and make eye contact while doing it would rival what it takes nuerotypical people to give a high-level presentation at work. My trick is that you don’t see it.
What Do You Mean, I Lack Empathy?
My biggest complaint as a Passing Aspie is listening to people go on about how people with autism lack empathy. Excuse me, but says who? Isn’t what you really mean that people on the spectrum don’t understand how YOU are feeling??
The truth of the matter is though that you don’t understand how people on the spectrum feel any better than we understand you. More than half of the time, you don’t even spot me hiding in the crowd. Before you reject this theory, ask yourself if you could do what I do every day of my life and pass in a room full of people on the autism spectrum the way I pass among you. Didn’t think so!
I don’t want to criticize neurotypical people. It’s just insulting and hurtful me to hear that I am believed to lack empathy when my best savant talent has been to develop empathy at such a level, that I cannot only pass as neurotypical and live in your world but very often translate between people on the spectrum and people who are not and represent both with a startling degree of accuracy.
If you have read this far, I want to thank you for having the empathy to hear my words and relive my struggles with me. Please show this empathy to others with invisible disabilities and imagine them walking in very uncomfortable shoes. If you truly can’t do this with compassion, then please keep it to yourself and do not talk about what you think you know about my autistic brothers and sisters.