I occasionally am asked to speak at meetings, conferences and classrooms to discuss our autism "journey". I do not hold myself out as an expert in anything but my own life. But I do have a story to tell and I am somewhat of a story-teller. I have never had a fear of public speaking. In fact, I rather enjoy it.
It's funny that I get asked to speak about autism, because I have no idea what it is like to have autism. However, I do have a long term relationship with autism which started 17 years before I had children of my own.
When I was a teenager, I was a babysitting super-power. My father was a sailor and we lived on a Navy base. I paid for my first car (a 1976 AMC Hornet, thank you) with my babysitting cash. Which is impressive at $2 an hour. I was booked months in advance for the Holidays & if there was a large party in the neighborhood, it wasn't unusual for me to have 12 or 13 kids under my care. One day I got a phone call from a woman looking for occasional care for her disabled daughter. She asked if I could come for a visit, to meet her and her daughter and go from there.
I drove up her driveway and was totally wowed by the house... a huge, gorgeous McMansion on the banks of the St. John's river with a beautiful yard and a large wooden swing hanging from one of the tree branches. A small, nervous woman answered the door. She was well kept, neat, prim. Her house was House Beautiful beautiful. She invited me in, walked me to the sun porch, offered me some RC Cola and sized me up. She grilled me for 45 minutes while her daughter napped. Her husband was an Officer in the Navy and deployed overseas. She'd never hired a babysitter before. She had one daughter, Anna, age 4. Anna was "severely autistic". It was the first time I'd ever heard that word. If only I'd known what my future held.
Soon after, there was a HUGE racket coming from upstairs. It sounded like a herd of elephants. She looked at me and asked "Do you want to meet her?". I nodded and we walked upstairs. Anna's door was locked from the outside, a safety precaution. She opened the door and in this huge bedroom there was just one mattress on the floor, a few stuffed animals and Anna. Anna was rolling around on the floor, kicking her feet, making very loud animal noises, still wearing a diaper at age 4. She never registered our entrance into the room. She never looked at me or acknowledged me. Her mom looked at me gingerly... waiting to see if I was going to make a run for it. I didn't. "Are you interested in helping me?" "Yes, of course."
And that's how I became Anna's babysitter. I went for training on two occasions before the mom left me alone. The first time I babysat for Anna, on my own, her mother left for 15 minutes. And my guess is that she went to the end of the block and waited and came home. This was in the days before cell phones. Can you imagine how afraid she was to leave Anna with me? Anna couldn't speak... she could never tell her mom if anyone treated her poorly or didn't take care of her toileting needs or feed her. Eventually her mom would leave us alone for several hours at a time. I ended up being a dedicated caregiver to little Anna for nearly a year.
In that year, Anna never spoke a word to me. She never had eye contact with me. But she and I had a connection. I learned that the swing in the yard held the key to her calmness. I would sit on the swing and place Anna in my lap facing me. She'd lay her head on my chest and we would swing and swing and swing. I'd feel her ever-tense muscles relax, her anxiety would decrease and she would become almost... calm. In those moments on the swing I would sing to her and tell her long stories of Anna the Warrior, Anna the Explorer, Anna the Novelist. I don't know what she understood, but I could feel that she loved me and trusted me. And I loved her. I loved her very much.
Fast forward 20 years, and there I am, sitting in the doctor's office and hearing the word "autistic" again. Well, you can imagine the thoughts that raced through my mind as I searched by mental rolodex, climbing back through the years and the tangle of life experiences to try and remember everything I could about autism. My ignorance and fear combined to create easily the most terrifying moment of my life. I set out on a journey to educate myself in every possible way from that moment on. I would not be blindsided by autism, I would know about it, study it and stand ready to deal with it and yes, even love it.
So now when I am asked to speak about autism, I just stand and share what I know. I try and help demystify autism for anyone that cares to listen. Because fear is based on ignorance and it is so much easier to deal with something you understand.
That being said, I sometimes have a hard time explaining the way the autistic mind thinks. Therefore, I just try to use examples from our life to illustrate the interesting way my son views the world. I often share one of my favorite examples:
John has a love of filling out forms. Whenever he sees a form of any kind, he is compelled to stop whatever he is doing and fill it out. A few months ago, he was looking at a book from our shelf - A Children's Bible. In the middle of the book, there were some peachy colored pages called a "Personal Record" where the owner was supposed to write down important life events and people. He came to me while I was cooking dinner and asked me if I could help him fill it out. I told him I was busy with cooking and he should fill out the information he knew and later, I would help him fill in any missing information.
After bedtime, I found the bible sitting on the table, opened to the Personal Record. He'd filled out what he knew:
Isn't that awesome? Instead of listing the date he was born, he listed his state of being at birth! Who does that??? John does. That's how he rolls.
What is kind of sad, however, is that if this were an SAT question, he would have gotten it wrong. Even though it's totally not wrong. It's incredibly, amazingly right.
I have come to the conclusion that autism isn't actually a deficit in brain function. Rather, it's an elevation of the human thought process. One we are just starting to understand.
He was born blessed. Wasn't he?
So was Anna.
And I am blessed to simply say I know them.