5: First Talk

5: First Talk

From Chicken Soup for the Soul: Raising Kids on the Spectrum

First Talk

Autism is part of my child, it’s not everything he is. My child is so much more than a diagnosis.

~S. L. Coelho

The crowd pressed against us in the line for the Lilo & Stitch attraction. The heat of Orlando in July made the closeness of human flesh even more uncomfortable. I felt a shift in the small hand I held and realized my son, Aaron, was trying to break free.

Oh, no, not in this crowd. “Hey! What are you doing?” I said.

“I can’t do this.” Still trying to free his hand, Aaron looked up at me, his brown eyes wild, mouth clenched into a thin line. “Let me out!”

My husband, William, and daughter, Ann, turned to see what was going on. They tried to reason with Aaron by showing him the little kids in line and reminding him the ride was based on a favorite cartoon.

“I don’t care!” Aaron shouted.

I was afraid he would bolt. “We’ll wait outside.”

Aaron led me against the flow of people pushing to get to the ride entrance. We emerged into the bright sunlight. After my eyes adjusted, I looked for a place to sit and wait. I found a bench, and we walked over and sat down. I dug in my backpack for water bottles, handed one to Aaron, and for a minute we just sat, drinking.

He let out a big sigh. “What’s wrong with me, Mom? I mean, I wanted to do that so much, but I couldn’t.”

Please, God, give me the right words.

We were surrounded by people rushing to get to the next ride, enjoying the things I wanted so desperately for Aaron to experience. The shouts and murmurs of the crowd faded away as I focused on my boy. His red hair was damp, skin flushed with heat. He wanted answers, and even though he was only seven, he deserved them.

“Nothing is wrong with you.”

I paused. He needed more than platitudes. “Everyone has strengths and weaknesses. We must use our strengths to overcome our weaknesses.”

“I don’t know what you mean. What’s my weakness?”

Should I name it or just explain? “Remember two years ago when we went to a doctor’s office and different people asked you questions?”

“Maybe.” He crinkled his nose as he tried to remember.

“They were trying to understand why you seem sensitive to certain noises and clothes, can’t stand to be thirsty, hungry or hot and don’t always understand why people act a certain way toward you.”

He frowned. “What does that have to do with Lilo & Stitch?”

I couldn’t turn back after this. “When all those people at the doctor’s office talked to you, they decided you have something called . . .” My throat closed, and I choked out the rest. “Asperger syndrome.”

“What?”

“Asperger syndrome. It means you think differently than other people. You are really smart, but you have trouble processing your senses when you feel them too much. You know how when you are too hot you have trouble thinking and making good decisions? You feel panicked like you are in danger. When you feel like that, you react like you are being attacked and either get really mad, run away, or shut down.”

“I felt like that just now. I felt like if I stayed in there, something bad would happen.”

I glanced up at the giant comical faces of the Disney characters on the outside of the building, inviting everyone to step into their world for a few minutes. How could I explain why he was frightened?

“Maybe because you don’t like surprises. You prefer things to be lined up and scheduled. When you walked into that tunnel and didn’t know what to expect, your brain warned you of danger when there really wasn’t any. Not all kids with Asperger’s have that problem, but you do.”

“But why am I like this?”

I looked down and fiddled with the straps on my backpack. I wanted him to know I didn’t consider his Asperger syndrome to be something wrong with him. It was part of who he was. “This isn’t all a bad thing, Aaron. You know how I call you my finder?”

Aaron nodded, and the corners of his mouth turned up just slightly. Progress.

“That’s because you’re so aware of the things you see.”

He opened his eyes wider. “I am good at finding things.”

“Or math and computer stuff. You’re good at those because your brain likes to think of things in a way that makes those subjects easier. See? It’s not something wrong with you — just different.”

This was serious business, the discussion of a lifetime. I had to get it right. I wanted him to understand why he struggled sometimes, but not consider Asperger’s a crutch or excuse.

I tried to relate his situation to someone with a different disability like the visually impaired, but the comparison was lost on him.

“I can see just fine,” he said. Literal thinking at its best.

I decided to be more direct. “Sometimes you have to have a talk with yourself so you don’t panic when there isn’t a reason. Use brain power to see through the anxiety.” I looked up and saw our family heading to meet us. “We’ll keep working on it. Meanwhile, try new things, and remember life can’t always be planned out.” I smoothed a tendril of hair away from his forehead.

He drew back, but only a little. “Mom, will I always be this way? Will I get better?”

Since his diagnosis, well-meaning friends and family had told me so often he would grow out of it that this was a sore spot with me. How could I explain without making him feel hopeless? “Asperger syndrome is not something you can cure, but you can learn things that will make life easier. Your dad and I will do whatever we can to help you.”

Aaron put his head down, and drew a circle on the ground with his foot. “Now I understand why I have trouble with things other kids don’t. I wish I didn’t have this,” he said.

“I know, but here’s a secret. God made you this way for a reason. He has a plan for you like everyone else. I want to help you learn what you need to know to accomplish it, not change who you are. Asperger’s is part of you, and it makes you pretty special. I love you.”

I spread my arms, inviting him into a hug, and he snuggled in. I was glad he liked hugs. That was not always the case with Asperger syndrome.

William and Ann approached us. I looked at them through bleary eyes and smiled, thankful for so much in that moment: the chance to have this talk, Aaron’s ability to understand, and the knowledge that we could all work together to help him. We were going to be okay.

Ann ran over. “You should have gone! It was so cool!”

“Maybe I’ll try it later,” he said. He looked at me and smiled. “I’ll just have to talk to myself about it first.”

~Lana Clifton

More stories from our partners