By Anita Lesko, BSN, RN, MS, CRNA
Imagine going the first fifty years of your life with an invisible disorder that you don’t know you have. It affects every move you make, every word you speak, and simply everything you do. You realize you are different than other people and never fit in, only you don’t understand why. As a child, other children run away from you. You try and make friends only no one wants to be your friend. You have all kinds of sensory issues that others don’t seem to have. Your sense of taste, smell, touch, hearing, and vision are amplified as if you live in IMAX 24/7, 365 days a year. Every social interaction seems to end up as a negative one. When you attempt to join in on conversations at work, everyone ignores you as if you are invisible. You are a target of bullying and harassment, not only throughout your school years, but at your workplace as well. You spend fifty years feeling like you are on the outside of life looking in. As if there’s a glass shield keeping you away from joining in with others. You see people together out in restaurants, in malls, everywhere you go, you see them laughing, talking, having fun. Yet there you are, alone. You try and get used to it, but deep inside you long for even just one friend. The feeling of loneliness at times totally consumes you. Holidays are the worst, as you are aware that others are gathering for big celebrations, as you are home alone yet again. Sadly, this is all common to individuals on the autism spectrum.
It wasn’t until 1994 when all the writings of Dr. Hans Asperger of Vienna, Austria got translated in the United States when Asperger’s Syndrome became known. Prior to this event, people in their 30’s, 40’s, 50’s on up went through their school years undetected of being on the autism spectrum. I was simply known as the weird kid that none of the teachers knew what to do with.
My autism diagnosis happened by chance, which is quite common to others in my age group and older. One night at work, one of my co-worker’s came into the lounge crying, stating that her six-year-old son just got diagnosed with Asperger’s Syndrome. I’d never heard of it. She handed me some papers to show me what Asperger’s is all about. As I looked at the top page, my eyes widened as I couldn’t believe what I read. There was a list that said if you have ten out of twelve you have Asperger’s. I had twelve out of twelve. I looked at Lisa, who’d known me for ten years, and exclaimed “Good grief! I have Asperger’s!” Suddenly all the pieces of the puzzle of my life fell into place. I now knew why I was so different and never fit in. I now understood all the sensory issues, and social difficulties were because of this. That night on the way home from work I stopped at the book store and purchased every book they had on Asperger’s Syndrome. I stayed up all night reading. By the dawn’s early light, I knew without a doubt that I had it. Three weeks later I went to a neuropsychologist, went through three days of testing, then received my formal diagnosis.
Getting diagnosed totally changed my life. I then knew I wasn’t alone, and there were millions of others just like me with all the same problems. I started up an autism support group which I led once a month. I did that for several years. In fact, that’s where I met my husband, Abraham, also autistic! He had attended one of the meetings, and we immediately became friends. Two years later we got married. Wanting to change the world’s view of autism, we decided to get married at the Love & Autism Conference in San Diego, CA. I had already been invited to speak at the event. Soon after, Abraham and I got engaged. I called the conference organizer to ask if we could get married at her conference! Without hesitation, she proclaimed “Yes!” As the planning evolved, we decided to have our entire wedding party autistic, so our ALL-AUTISTIC WEDDING was born! On September 26, 2015 we opened our wedding to the public. We wanted to show that autistic people have the same need for love, relationships, and marriage just like everyone else. Our event attracted international media attention. We were in PEOPLE twice, Good Morning America, Fox News, ABC News, The Huffington Post, and many more. Joey Travolta (John Travolta’s older brother), and his all-autistic film crew, made a documentary of our wedding! We love to share our video to spread our message around the world. It can be viewed at:
I feel it necessary to share all this with health care professionals to convey what autistic people feel on the inside. Whenever you care for an autistic individual, whether it be a child or an adult, don’t judge them by how they seem on the outside. Quite often, their facial expression doesn’t truly represent what they are feeling on the inside. In fact, autistic individuals are actually quite emotional. They just have difficulty expressing it on the outside.
One of the characteristics of autism is lack of facial expressions, and very limited ability to read or understand facial expressions of others. There is also limited/no ability of understanding body language, hand gestures or nuances of vocal tones. Body language is the second form of communication that humans use to express their thoughts, emotions and desires. There is also a lack of the Autism Spectrum individual in making eye contact. Many in fact will describe looking into another person’s eyes as literally being painful.1
Obviously, these difficulties in expressing their emotions, feelings, and thoughts leads to difficulty in communicating with others. In next month’s blog I’ll discuss the various methods autistic individuals use to communicate. I will also provide ways health care providers can best communicate with autistic patients.
More of my story can be found on the CDC’s website at
Have a Great month!