Outcast by Association

Jesus and the Leper

This kind of thing happens a lot, but I don’t often share it in this forum: a passage from Scripture or an insight from prayer will speak directly to my life as an autism dad. This time, it’s an insight that came from the Scripture readings at Mass today (Sunday, February 11). So, having explained the spiritual nature of this post—at least the beginning of the post—let me move ahead.

First, the Story.

Today’s Gospel reading was the story of Jesus healing a leper. It’s in Mark 1:40-45. The man, somewhat timidly, says to Jesus, “If you will it, you can make me clean.” Jesus, in reply, touches the man and says, “I do will it; be made clean.” And the man was healed.

But then Jesus tells the man to keep this miracle quiet—only to show himself to (not necessarily tell) the priests, who had the power to release him from his exile and allow him to return to his home, his family, and the synagogue. So what does the man do? He goes around telling everyone what Jesus did.

Mark tells us that because of the man’s loose lips, “it was impossible for Jesus to enter a town openly. He remained outside in deserted places.” By touching the infected flesh of a leper, Jesus became ritually unclean, just as the leper had been. And because this fellow spread the news, everyone knew what Jesus had done. He was now barred from entering any town or village. He couldn’t even go visit his mother back in Nazareth.

A Simple Choice.

Okay, so that’s the story. Here’s what hit me: Willingly (I do will it), Jesus took upon himself the isolation that had been this unfortunate man’s lot. The ritual uncleanness had passed from the leprous man to Jesus, so Jesus could no longer be around other people any more. And without a peep, he accepted the consequences of this action. Knowingly, by his own actions, he placed himself under the judgment of the law.

What I found interesting is the simple, unassuming way that Jesus did this. There were no recriminations against the upholders of religious purity. No sense of superiority over those who enforced the law with no regard for the people they were condemning. No protest against the unfairness or extreme nature of the judgment. He quietly accepted the verdict. He willingly became an outcast so that this fellow could be reunited with his family and friends.

Outcast by Association.

There’s a parallel here for my life as an autism dad. Over the years, I have had countless meetings with teachers, administrators, school psychologists and school counselors. Along with Katie, I have pushed and pulled, schmoozed and confronted, plotted and pleaded to get my kids the help they need. I have even gotten one teacher fired and another demoted because of the way they worked (or failed to work) with my kids.

As you might expect, I have become persona non grata in a few schools. I have been identified as that dad on more than one occasion. One assistant principal became very adept at not returning my calls or e-mails. A teacher once told me, “You know, not everyone is cut out for school” as an attempt to keep me from pushing for help for my son. Another administrator grew so weary of my advocating that all sense of comity shriveled up, and every communication became unnaturally stiff and formal. It’s as if I had become an outcast myself.

I’ve done all of this so that my children could be more welcomed into the community of their classmates and into the community of learners that is their right. Of course, I’m willing to do it. I’d do anything to make sure my kids get every chance to succeed.

But before you get the idea that I’m a hero—or that I think I’m a hero—let me give some perspective.

Parting Ways with Jesus.

As I said above, Jesus became an outcast willingly. There was no bitterness in his heart against those who judged him. He felt no recrimination against the people who barred him from entering their towns. He held no judgment against his judges. There was only concern for the ones who had been excluded and demonized. He even forgave the people who crucified him.

I, on the other hand, can give in to the very same us-versus-them mentality that I have railed against when it is aimed at my children. I can issue harsh judgments about their teachers’ ignorance, blame the school administrators for their callousness, and even issue a blanket condemnation of all the neurotypicals around us—everyone, that is, except my close friends who, of course, get it.

So this is where Jesus and I part ways. Jesus feels just as badly for the people who do the judging as he does for their victims. In his eyes, everyone is a victim. They may be victims of the structures of sin in the world that convince people that they get ahead by pushing other people down. Or they may be victims of the structures of sin in their own hearts that make them demonize the “others” around them—the attitudes of rivalry and animosity that lurk inside everyone’s heart. Or, most likely, they are victims of a mixture of both.

It Starts with Me.

Of course, I will never be as pure or humble as Jesus. But that doesn’t mean I shouldn’t try. I don’t want my kids to grow up with a victim complex. I don’t want them to grow up bitter at the world. I don’t want them to develop some perverse sense of superiority to the “haters” and “judgers” out there.

It starts with me. Children learn what they live, so I need to create an environment of openness and generosity in our home. I need to model forgiveness and understanding. And because my kids can have a hard time grasping social cues and relationships, I need to be as clear and patient as possible.

This, I think, is one of the most important lessons I can instill in them. Because no matter where they go or what they do, they’ll always stand out. Maybe not all the time, and maybe not a lot, but they will. It’s inevitable; they’re too different not to. And no matter how much progress we make as a society, there will always be people who don’t understand. People who treat different people as lesser people. People who write them off. Even people who turn them into scapegoats.

If I can teach my kids to forgive and not judge, they will develop into men and women whom people will want to be around. They’ll find their communities, their homes, their tribes—places where they can thrive and make a difference.

It starts with me. But then again, it really doesn’t. It started with Jesus. He set the tone. He showed the way. And by his grace, I can too.

Random Thoughts during a Meltdown

Mushroom Cloud

• It’s only a video game. Why can’t he see that? He has a lot of others; he doesn’t need to play this one.

• Why would his older brother forbid him to play this game? “It’s mine. I bought it with my own money, and I don’t want anyone else using it.” This is such a hard policy to enforce when you are one of six children. But he seems oblivious to how much anguish he’s putting his brother through. That part of the equation doesn’t enter into his calculations.

• Ah, the two-edged sword of autism! Perseveration and emotional dysregulation on the one hand (the younger brother), and a cold, hard adherence to fact and logic on the other (the older brother).

• The poor kid! He can’t stop crying. I know I shouldn’t talk yet. Just keep rubbing his head and let him get it all out. Still, there are so many things I want to tell him. Even once he does calm down, there are still a few things I’ll have to keep to myself. Like my fear that he may never find a way to take control of his own emotions. Like my reluctance to think about the kind of future he may have if he doesn’t work through this stuff.

• Okay, so we’ve been up here in my room for, what? Nearly thirty minutes. Dinner is getting cold, and I’m hungry. But this boy needs help. He was yelling at everyone, throwing things, and shouting me down every time I tried to calm him down. Now he’s just crying quietly, bemoaning his fate and asking why his brother has to be so mean to him. Give him a few more minutes, and he might shift a little more.

• You know, meltdowns are curious things. You can’t just say, “Oh, he’s just having a meltdown; he’ll be back to normal in a few minutes.” I used to say that, but I don’t think it’s fair—to him or to me.

—It’s not fair to me because it keeps me trapped in the mode of thinking that this isn’t his “normal,” that these are just aberrations to be endured when they crop up. Kind of like when you get the flu once every few years. So every time this happens, it takes me by surprise. “Where did this come from?” As if I didn’t know. And that makes it all the more draining emotionally.

— It’s not fair to him because I’m not helping him learn how to deal with these things. He’s getting older now—he’s into his adolescence—and he’s going to have to start figuring himself out. I can’t be there to hold him every time something goes wrong. He needs to learn how to stand on his own two feet. But it doesn’t occur to me until we’re in the middle of a meltdown. Then, it’s too late to make any progress.

— It’s also not fair to hold him to expectations that he cannot fulfill. That will only make him feel guilty and inadequate.

—At the same time, his oldest brother has been through a lot of these behaviors and has come out the other end. Granted, he is not as severely affected by ASD, but still he is leveling off. I wish I knew what the future holds for this child of mine!

• This is who he is. At least for right now. Meltdowns are part of his make-up, not just random things that descend upon him. He is autistic, and that means he will get overwhelmed. He will take things too literally. He will get overwrought over issues we consider minor. He may never get over it. Maybe he will, but it’s not a sure thing. Anyway, it doesn’t matter. How can I help him right here, right now? And tomorrow and the next day, how can I teach him?

• Okay, now he’s moving into quiet, occasional sobs. He may be ready to talk. Maybe I can walk him through what happened so that he can get just a little bit smarter, just a little more self-aware. “What do you think, son? Can we talk about this?”

• Dammit! That made him begin crying again. I wish I knew how to read him better. I hate being the one to push him over the edge. Not because dinner is still waiting—stone cold by now—but because this is only going to make him feel worse about himself.

• Back to his older brother. What should I do about him? I know if I talk to him about sharing and being generous, he’ll use his [flawed] logic and his [unnecessarily] strict sense of right and wrong to push back. And when he pushes back, he really pushes back. If I don’t address this, he’ll lose another opportunity to learn how to understand other people and their emotions.And I’m getting tired. And really hungry. How far do I push him? How can I reach him and help him think with his heart as well as with his brain?

• Oh wait, the boy is coming around. He was hunched over himself on the bed; now he has unwrapped himself and is lying down with his head on my chest. Progress! I don’t have to keep rubbing his head now. I can just grasp his hand and give it a reassuring squeeze.

• “It’s going to be okay, son. Don’t worry; I’m not mad at you. Are you ready to go down and have dinner? Yeah? Okay, let’s get something to eat.”

• Well, the fries are cold now, but at least the BLT is still okay—it’s a sandwich, after all. There he is, quietly eating. His brothers and sisters have already left the table. Now it’s just him and Katie and me. She calls him over and gives him a big hug. He smiles, somewhat sheepishly. She speaks words of consolation and encouragement to him. God, I love her! She is so good at mopping things up.

• Now he comes over to me, wraps his arms around me, and doesn’t let go. God, I love this kid! Whatever happens—meltdowns or no meltdowns, the future be damned. Right here, right now, I love my son. Just like I loved him when he was crying. Just like I loved him when he was throwing his fidget spinner across the room. Just like I’ll always love him. No matter what.

A Perplexing Plethora of Plushes


With great pride, she posts this picture on Facebook, reveling in her massive collection of Pokémon plushes.

I see the post, and all I can think about is the anxiety, conflict, tension, and melt-downiness related to these infernal creatures.  

• The extra backpack stuffed with as many as possible to help her make it through a school day. 
• The destruction she has wrought to other kids’ plushes in order to fashion her own copycat creations.

• The often tear-filled way she has obsessed over the next plush that she absolutely, positively has to obtain within the next few days.

• The huge mess she has created in her bedroom because she needs all these creatures around her when she sleeps–and she needs them to be in a heap, not in some orderly grouping.

However . . .

• She sees the post as a way of celebrating her best friends and most constant companions.

• She has found countless hours of consolation with these plushes. Especially in times of stress and fear.

• These creatures have helped her maintain a good portion of her innocence and childlike nature well into her teenage years.

• They have sparked many a creative story-telling session. Granted, the stories exist in her mind and are rarely shared with other people. Still, the creativity abounds.

• She knows that she’s different from most of her peers, and she suspects that these creatures will always keep her company, no matter how many or how few her human friends are.

• For better or for worse, each of these plushes plays an important role in her life.

So here we are. I love this child like mad. She has pried open my brain in ways I could never have imagined. And the wedges she has used are often these soft, cuddly, beguiling, bedeviling . . . things.

Adventures in Airport Advocacy

Airplane! Logo

Every now and then I am reminded of how far we have to go before our world welcomes people with disabilities and neurological differences. Yesterday gave me two such reminders back to back. I was at the airport at the start of a business trip to visit my publisher in St. Augustine, Florida.

“Gawd!”

The first reminder happened as I was standing in line, waiting to board the plane. I spot an older man (~70-75) walking in circles at the gate area. He is cross-eyed and has the pleasant-but-pouty look of someone with cognitive challenges. When his care giver walks him to the gate for pre-boarding, he hands his pass to the agent and declares in a loud, excited voice, “I’m ready to fly!”

The agent smiles back. “Yes you are, sir,” and shares an ill-timed high-five with him.

A beautiful scene. Until the woman waiting in line ahead of me (~60-65) grimaces and turns to her friend. “Gawd, I hope he don’t end up sitting next to me,” she practically spits. “I’m here to relax, not deal with his kind of people.”

Her friend nods. A knife to my heart. A very brief thought that maybe I should say something. But I decide against it. What’s the point? She does not seem the type given to respectful dialogue. Instead, I offer up three prayers: one for the man, one for the woman, and one for myself.

For the man: “Thank you, Lord, for this fellow’s joy. Please keep him safe in your arms.”

For her: “Lord, please help her become more understanding and welcoming. I cannot fix stupid, but you can fix everything. Please help her out here.”

For me: “Please, God, help me be more forgiving. And maybe more brave.”

The Regular Dads Club.

The second reminder happened on the plane. I sat next to a Navy JAG officer and his wife. Both about my age. A delightful couple. Pleasant, engaging conversation with a good amount of back and forth between the JAG and myself. (The wife was a quiet sort.) We talked about our travels: his deployments to Iraq and Addis Ababa, and my six months in Tehran and post-Soviet trips to Central Europe. We talked about school: him at the Naval Academy, and me at The Mount. We talked about politics—after some careful circling to tease out each other’s views, of course. (He didn’t like Trump either, so we continued amicably.)

Then we talked about kids. His daughter, a linguist who was getting her Air Force commission this weekend. His son, who just graduated from Cornell, his second son, with an MBA from Stanford. And his third son, who is graduating from high school with a swimming scholarship to Colorado. He was obviously proud of his kids, but not in a snotty way. He didn’t even humble brag.

Then he asked me about my kids. “You have a lot of kids. Have you got colleges all figured out yet?” When I told him that we weren’t so sure about who would be going and who wouldn’t, he looked puzzled and asked why. I told him about their ASD diagnoses and some of the challenges they face.

It got awkward. He tried to say something like, “Well, not everyone’s cut out for college,” and “There’s plenty of trade jobs out there that need to be done.” I tried to change the subject, but he had essentially checked out. The conversation politely petered out, and a couple of minutes later, he opened his laptop, plugged in his ear buds, and settled in to a movie.

I don’t fault him. He just didn’t know what to say. His world had been circumscribed by success after success—of course, with hard work and sacrifice—and he didn’t have any reference point to orient him to special needs parenting. It’s a shame, too. We were having a good conversation. For a few moments, I was a Regular Dad. I was part of the club. I was just like everyone else.

Don’t get me wrong. I like the club I’m in. It would just be nice to bridge the gap between these two clubs every now and then. 

Even better, it would be even nice if there were no gaps. No separate clubs at all.

That’s why we need to keep advocating.