MY PERSONAL EXPERIENCE WITH AUTISM

We started R in therapy almost 8 months ago; ABA or Applied Behavioral Analysis is the type of therapy we chose for R. The basic premise is that he is rewarded for behaviors we want and ignored for behaviors we don’t want. We love it and have seen nothing but positive results. In the 8 months we have been doing this therapy, R has learned to sit at the table, eat with a fork and use his napkin. He has also stopped jumping on the couch, climbing the bookshelves, and screaming. R has learned to take deep breaths on his own when he is frustrated and has improved eye contact, connection with peers, potty training and regular back and forth conversations. His biggest victory is that he will be moving from a Special Ed class to a General Ed classroom in September!

To get a picture of what our day is like, R is in school in the mornings where he has Occupational Therapy and Speech Therapy once a week. After school, 5 days a week, he has a therapist Mr. Science who comes to our house for 3 hours. In addition, Mr. Science and I have 1 hour of parent trainings each month to help us to reinforce what R is learning. I cannot express enough my utmost gratitude for the people that have helped R thus far. It has been the most loving, supportive experience.

Having said that, ABA is no walk in the park. It takes more effort, energy and supervision than I would honestly care to do much of the time, but the results are astonishing and every bit of effort we put into his therapy has been worth it! I am amazed as I watch R turn away from old patterns. When he gets stuck on a quote in a movie, or a book, or something he found amusing he may repeat it over and over:

“HE jumped out of the window! HE jumped out of the window! HE jumped out of the window!” In R’s world it all makes sense, but to everyone else (except maybe me) it feels so out of context. We may cue him “Try again” or “What’s that from?” and he will correct himself, “I’m remembering in Big Hero Six when Baymax said, “He jumped out of the window!” “Oh, awesome R, thanks for telling me!”

Although these micro-changes are happening every day, I can sometimes feel isolated from his world, which at times he is so deeply involved in, that I end up following him into a rabbit hole of conversation. Sometimes I will unconsciously question and answer his random dialogue in my craving for connection.

Me: “How was school today R?” R: no answer Me: “What did you do today in school R?” R: “He is on a submarine” Me: “Who is on a submarine?” R: “The guy is on the submarine, and he goes flying UP into the air, and flies all around and like that!” Me: “Wow, R who’s the guy on the submarine?” R: “Woody and Buzz are on the submarine and they look through a telescope and see the pirate, ARRGG!!” Me: “Wow, that’s cool!” R: “Sufid empty brain!” Me:??

My craving for connection has made it hard for me to give up this type of dialogue with him. In ABA to extinguish a behavior you cannot give it attention. Once when discussing with Mr. Science why I need to stop engaging in this type of conversation with R, I was almost in tears when I asked “Well, what will I talk about with him about then?” He reassured me that R will learn to communicate in a way that the world will understand too, and we are helping him to do this.

I am working on it, and R is moving a little more in my direction. We sing sometimes, or I ask better questions. Instead of “How was your day?” I ask, “What did you eat at lunch?” and usually he gives me a correct answer.
R: “Cheese?” then he follows it up with “Can I have some cheese Mom?”
Me: “Sure buddy!” R: “Thank you! I love you Mom!” Me: (heart melts)