More than 15 years later, their work has culminated in a new book, "In a Different Key: The Story of Autism," which explores the case of the first child diagnosed with autism and the millions of children who followed, sharing the stories of hundreds of parents, children, and adults living with autism today, and the common misunderstandings that persist.
“You need to wait here." I heard those words and my heart sank because I immediately knew exactly what that airline representative was thinking. And it wasn’t going to be good.
Here’s what was happening: My husband and I and my 21-year-old son Mickey had just arrived at Newark airport. He had just gotten his ticket at one of those self-service kiosks. He needed to put his bag somewhere so he asked one of those airline helpers, you know those people who are on the floor and sort of helping you out when you don’t know what to do
He said, “Where do I put my bag?”
She pointed to the corner and over by the X-ray machine.
And then we dropped off the big and the three of us walked to the stairs on our way to security and all of a sudden this same woman came running after us and said, “Stop you need to wait here.”
And I knew again, exactly what was happening. Mickey hadn’t made eye contact with her and it set off some antennae in her head, triggering “SECURITY ALERT.”
So I knew I had to keep the situation as calm as possible. So I said, “Ma’am, my son has autism. He doesn’t look people in the eye –- like many people with autism it’s really difficult for him to make eye contact."
And she looks at me –- and first I say, "He’s on his way back to Arizona. He’s been back and forth a whole bunch of times. We gotta go.”
She doesn’t want to hear any of it -– and she basically says “YOU JUST WAIT HERE," and she walks away where I can see her whispering to this other ticket agent.
And my heart breaks, because I know how hard Mickey has worked to get to this place so he could travel on his own back and forth to Arizona.
And this is something we’ve done his whole life, things that that come naturally to other kids.
We had to teach him hundreds of steps to learn how to brush his teeth – to put the toothpaste, on the thing in the tube, literally hundreds of steps.
And even to wash his hair, we had to teach him first you have to use water in order to use the shampoo, otherwise it doesn’t work.
Halloween -- after you ring the doorbell, then you say "trick or treat," but you can not run into someone’s house.
So this trip to Arizona, his flight back to school, if she bumps him off this plane -– his self confidence -– he’ll be completely devastated and he won’t even know what it is that he did wrong.
And now I see her coming back, out of the corner of my eye. She says: “The supervisor should be here shortly."
“He is a security risk," she says.
“A security risk -- are you kidding me? What’s your name?" I say to her.
She won’t answer me and as I go to look at her badge she actually covers it with her hand.
Now the situation is escalating. I am so furious that I acutely say to her: “You know you’re ignorant -– you have no idea what autism is.”
“I don’t need to listen to you anymore,” she says, and storms off –- and says: “You just wait here until the supervisor comes.”
Now I’m thinking we’re in trouble.
The clock is ticking and Mickey has a plane to catch. I look over to my husband and I mumble, “I could really kill this woman,” and Mickey, who has been listening to everything that is going on, and who is very literal -- autism again -- says “Mommy” -- yes he still calls me mommy - "you can not threaten to kill someone, especially in an airport that is a very dangerous thing to do and you should not joke about it.”
We have taught him well.
Now, we’re still waiting, and I just sort of think, well we have nothing to lose. And I say to my husband, no one is watching, just take him down to security. He hasn’t done anything wrong -– let him go -– let him go to the gate, say good-bye.
He gets through security and I’m still standing there.
And I don’t know what possesses me, I should have just kept my mouth shut but I can’t resist and I say to the woman, “Well everything is under control now, Mickey’s gone through security he’s on his way to the gate.”
Well, now I have her attention. I have to tell you, I have never seen anyone sprint down a flight of stairs and run through security with such agility. She must be after a terrorist or someone carrying a bomb, but no, it’s just my 21-year-old kid with autism trying to find a place in the world.
Her 100-yard dash works, she comes back with Mickey in tow – he’s clearly confused. But at least the supervisor has finally gotten there. And he says: “Well I’d like to ask your son a few question if that’s ok with you. Mickey you are sitting in an emergency row and they ask you to open the emergency door – what are you going to do?"
Mickey says: “I don’t sit in emergency rows.” Two points for Mickey.
And then he asks him other questions -- some type of test he’s doing to test his mental abilities.
And then a quick question -- "Mickey, let's go upstairs and talk. Should we take the escalator or the stairs?”
And Mickey looks at him and says, “Well, the escalator is going down, so we have to take the stairs."
And I think to myself, "He has autism, he’s not stupid."
I think the supervisor figures some of that out because he says: “OK, this is what I am going to do. I am going to walk your son to the plane and when I get to the gate if the flight attendant feels comfortable and is willing to take him I’ll let him fly, if not I will bring back here to you.”
We say goodbye and then we wait, and we wait.
And we are so anxious because I know if he brings Mickey back to us again his spirit will be crushed, and I don’t have any idea what I am going to say to him.
And it feels like we’ve been waiting forever.
And finally my cell phone rings, and it is Mickey. He says, "Hi, I’m on the plane -- I'm going to Phoenix. Bye."
And we go, "Hooray. Be safe. Call us when you land."
And then John and I look at one another and head to the parking lot, pretty silently, we get in and we sit down. And then we both cry. And I’m not sure if it was out of sorrow or relief, or maybe even a little bit of happiness -– because somebody decided that day, my son was up in that plane, because somebody decided to have his back. And I like to think, or at least hope, there will be many more people in his life that will say, "Yes, Mickey, join us, and have a seat." Thank you.
This story was developed and first performed at Story District in Washington, D.C. and is reprinted here with permission.