Category Archives: Social Issues

Uphill

In addition to meeting with Nigel’s new case manager last week and doing a walk-through at the high school, we had another reason for going there. Nigel needed to do a dry run of riding his bike to school.

Yes, despite past reactions to insects flying in his face, he wants to do this. And I need to let him. He has a fiercely independent spirit, which I think has served him well and will continue to. We have gone over safety concerns ad nauseam, and I think he’s ready. I have to trust that he can do this.

So, that afternoon on the way to the high school, he rode his bike and I waited a few minutes before following in the car. It’s only a mile to the school, but there are several stop signs and intersections along the way, and his job was to time himself so we would know what time he needs to leave the house in the mornings. I told him to ride at a normal pace, to stop at all the stop signs, and not try to hurry up if I passed him.

I pulled out of our driveway and drove to the first intersection and turned. There, about a hundred yards ahead of me, was Nigel on his bike, gesturing to three teenage girls as he rode past them. It looked like he was either giving them a thumbs-up or pointing ahead in the direction of the high school. I couldn’t tell what he was doing. But after he passed them and continued on, I could tell what they were doing. They were mimicking his gestures in an exaggerated manner. And laughing.

Unfortunately I have witnessed my son being laughed at many times. But because of that, I have learned how to respond in the most results-oriented way. I have lectured other kids, I have spoken angrily to them, I have glared at them. These reactions are instinctive. Of course, as parents, we are angry, we are incensed, at seeing our children disrespected in this manner. We want to lash out and make it right, even if our children weren’t aware of what happened at their expense. But what I have learned over the years is that if I approach the kids in an open, positive manner, most will respond much better than if I approach them with anger.

Nigel was at least 50 yards ahead and didn’t notice me pull up to the three girls. I rolled down my window, smiled, and asked if I could talk to them for a minute. “Do you know that boy on the bike who just rode by?” Two didn’t, one said she had seen him when she was at the middle school two years ago. I continued in a pleasant voice. “Well, I just thought you should know that he has autism, and he’s my son.” I could see a little embarrassment on their faces. “Ohhh,” they said, “he has autism? We didn’t know.” I was glad that they seemed to know what autism was. Years ago, when he was younger, people didn’t. “Yes,” I continued. “Most people don’t realize that, so I wanted to mention that to you. He’s going to be starting at the high school next week, so I just wanted to let you know in case you see him around. Sometimes people with autism have behavior that’s a little different; thanks for understanding.” “Okay,” they all said, and the older girl said, “Thanks for telling us.” I thanked them again and drove off.

On my last post, M of Incipient Turvy had mentioned the following in his comment:

I think the one thing people tend not to get (the general public, people not connected into autism issues) is the fact that every single step is uphill. There are no days you get to relax, not worry about it, coast on autopilot. If Nigel is in a public setting…and especially a highly social environment like school…every day requires vigilance, effort…it’s all uphill.

Even when we have successful meetings, when Nigel participates and advocates for himself, we never get to sit back and relax. Every day we contend with people who don’t understand, who might laugh at him, who might egg him on purposefully until he reacts in anger. These incidents will contribute to stress, self-esteem issues, and will definitely affect how well he does in school. It’s a constant battle. All uphill, just like M said.

And that’s why I talk to people every chance I get. It’s not easy for me, being an introvert, but it’s what must be done. That day, I talked to three girls. Three people. A drop in the bucket. But getting those three people on our side might make even a slight difference. And I’ll take it.

A few minutes later, I parked at the school near the bike rack. Nigel soon rode up, dismounted, and began locking his bike on the rack. I walked over. “Did you know those three girls back there?” I asked him. “No,” he said. “But they seemed nice.” “Yes,” I said. “I think they will be.”

The Pursuit of Laughter

When Nigel was 4-5 years old and not yet functionally verbal, he wanted so badly to play with the kids he would see at our local playground, but of course, he did not know how. I, preoccupied with toddler Aidan, would often have to intervene when Nigel would go up to a boy about his age and get in his face and start laughing. Nigel observed that when children played together, they would laugh, but he seemed to think that the laughter came first, that laughter would result in playing, and more laughter. Unfortunately, his tactic only resulted in the other kids getting either sad or angry – because they thought that Nigel was making fun of them. I would rush over and say, “He’s not making fun of you. He’s laughing because he wants to play with you,” but the negative impression had already been made, and they would leave. Nigel couldn’t ask me what he had done wrong. If I tried to explain it to him, he wouldn’t have understood. The only thing he understood was laughter. Laughter meant playing. Laughter meant fun.

These days, Nigel understands much better how to approach his peers. He understands that in order to laugh with people, you have to start doing a fun activity first. Or – you can watch a funny movie together. And Nigel has discovered that this is the easiest way to achieve the laughter connection that he has craved all of his life.

I don’t remember how old he was the first time I watched a Peter Sellers/Inspector Clouseau movie with him. All I remember is how much he loved the fact that everyone watching was laughing together, which I’m sure gave him a sense of security and completeness. Later, not only did he have a new source for his echolalia, he had a new response from his audience. He discovered that if he randomly dropped a line from one of those movies that he wouldn’t be told “Let’s not say things from movies.” No, he realized, the magic of saying something from a funny movie is that people will laugh.

Over the years, he has branched out with his funny movies – got into The Three Stooges of course, and then the iconic Monty Python. He enjoyed some Saturday Night Live episodes, especially those featuring Chris Farley. It seems that slapstick appeals to him most, to his kinesthetic sense of processing. But the old Inspector Clouseau movies featured both slapstick and verbal comedy, so he could experience the best of both worlds with those. He could walk into a room, and in Clouseau’s nasally voice ask, “The wax?” and then slip on his feet and say “AAAAHH!” as he fell to the ground, and everyone would laugh. When saying goodbye to someone, he could salute and say, “Until we meet again and the case is sol-ved,” causing more laughter. He could express his frustration with doing chores by imitating Clouseau’s boss, Chief Inspector Dreyfus, and say, “I’ve had enough!” and has also been known to say, “Somewhere, over the rainbow” in a crazy voice while on the verge of a meltdown, just like Dreyfus did in the insane asylum. He has definitely used movie echolalia in a variety of situations.

And in doing so, Nigel has finally mastered a way to meet his need for communal laughter. It’s been many years since he laughed in someone’s face to get them to laugh with him. What’s really great is that he’s discovered he can make people laugh just as much when he says his own funny lines. One day last week, he tripped over something, bumped into me, and caused me to knock over a glass of water. With each bungle he said a quick, “Sorry,” and, with the last one, looked at me to check my response. I couldn’t help but smile. It was all too funny – the tripping, the bumping, the sorrys, the spill – just like a scene out of a movie. Then, smirking, he said, “I’m getting more Clouseau-ish by the minute!” and we both collapsed on the floor in laughter.

One Moment, Please

You would think that your constantly-eating teenage son would come running when he hears the words, “Dinner’s ready!” Especially since you have resigned yourself to only prepare the foods that he will eat because he is thin and needs all the food he can get. So he doesn’t have to worry about coming to the table and seeing something he might not like. Why then, when you say, “Dinner’s ready!” does he growl in response, “That fast?!” This is after the five-or-ten-minute transitional warning that you have learned to always give him. You always say, “Dinner’s in five [or ten] minutes!” and make sure that he hears you, so that he can prepare himself mentally for the transition and finish up what he’s doing. Yet every day, without fail, he will sneer, “That fast?!” when you tell him that dinner is ready, even though he has had his advance notice.

And every day, you model a more appropriate response for him. “Okay, Mom” or “Be right there!” You tell him that he should respond more politely to someone who prepares a meal for him. But somehow the appropriate responses don’t seem to register. He doesn’t get it. For years now, he has said, “That fast?!” in a negative tone, and it just seems to be a habit for him. And you worry about him doing that at any friend’s house where he might actually be invited to have dinner. You worry that in the “politeness vs. difficulty with transitions” fight, politeness will always lose.

But, much to your surprise, the day will come when you will say, “Dinner’s ready!” at his bedroom door, and he, seated at his computer desk, will politely say, “One moment, please.” And you will just about fall over dead from the shock. And when you recover, you will think that he really must be up to something in there to be that polite. So you poke your head in and check, and he’s not doing anything out of the ordinary. So you praise him for being polite, but you don’t want to overdo it or that will exasperate him and then he will never be polite again. And you can’t help but wonder if this is just a one-time deal, if he had by chance recently watched a movie that featured that line when a character announced that a meal was being served and the scene was still fresh in his mind.

And the next day when you tell him that dinner’s ready, he says nicely, “Okay, Mom.” And you thank him and then just stand there in the hallway and think, Wow! He’s getting it! And the next day when you tell him he says, “I’ll be there in a minute.” And you start to hyperventilate because he’s been polite three days in a row. And the fourth day, you tell him when dinner’s ready, and he growls at you, and you realize that you had forgotten the 5-10 minute “warning.” So at least now you know that your transitional cue really helped, even though all this time it appeared to not make a difference. The next day, you remember the “warning,” and you tell him that dinner will be ready in five minutes. And he helps.To set. The table. And after you pick yourself up off the floor, you realize that even though he still needs help with transitions, he is finally learning to respond politely. Yeah. He’s getting it.

Autism and Religion

My father, who lives about 600 miles away, is coming up for a visit this weekend. We try to see each other at least once a year and have a good relationship. We do, however, differ in our religious views and practices. My dad is an Eastern Orthodox Christian, and I – how to put this diplomatically? – am on my own path.

I wanted my kids to have a basic knowledge of historical biblical events and an acquaintance with the stories I had grown up with. After all, they are ingrained in so much of our culture. When someone mentions Moses and the Ten Commandments, David and Goliath, Adam and Eve, or, of course, Jesus and Mary, I want my sons to at least be familiar with them. Nigel loves the historical aspect of the Bible and any accounts of natural disasters and plagues. Aidan, I think, likes being able to assure his great-grandmother, a lifelong Catholic, that he knows about the Bible when she gives him a book on the lives of the saints or the real story of Christmas. She must figure that since we don’t attend church, the kids would not know about these things. Regardless, Aidan graciously accepts whatever book she brings for him.

But Nigel is not able to understand that religion is personal, that people could easily be insulted if he is not reverent about their beliefs. On his own, he has researched and espoused evolutionism; he values its scientific basis. It does not surprise me that it appeals to him, due to his own evolution within the parameters of autism. Even so, he still has some room for God in his belief system. “It’s kind of half-and-half,” he says. “I’m undecided.” And that’s okay. He has enough to figure out with learning algebra, writing essays, processing sensory input, regulating his emotions, and navigating the social realm of his peers. Trying to understand religion might be too much for him now. Yet, biblical history, like all history, fascinates Nigel.

Several years ago, we had visited my dad at his home, and at the time, his living room also functioned as a part-time chapel for his church group. The room was filled with lavish icons on the walls, crosses, and prayer books. One icon depicted Jesus carrying the cross on his back. Nigel took it all in, but did not say anything as his verbal skills were undeveloped then. A few years later, my dad moved, and this time when we went to visit, Nigel commented on the icons. “What’s with all the God stuff?” he asked me, in no way realizing that his question had been worded irreverently. I explained to him that it was part of Grandpa’s religion and that it was very important to him.

And so, in an effort to show his grandfather that he respected his beliefs, the following year when Grandpa came to visit us at our house, Nigel had an idea. He must have wanted to surprise everyone, because he didn’t tell me about it ahead of time. Shortly after my father had arrived and was in the guest room unpacking, I walked into my room to get something and saw, through my bedroom window, some movement in the backyard. It was Nigel. He had taken some boards from the old backyard fence that had recently been taken out and nailed them together to form a life-size cross. And he held it on his back over one shoulder and, hunched over as he had seen Jesus in Grandpa’s icon, was slowly carrying it across the backyard.

My father has always been very accepting of Nigel’s autism and supportive. But he doesn’t always understand the myriad ways in which autism affects Nigel. I didn’t want him to see Nigel with the cross because I feared that he would think that Nigel was making fun of Jesus. Nigel, at age 10, did not have the capacity to make fun of anyone or anything, but when you aren’t able to spend much time with an autistic child, you don’t always realize that. You wouldn’t know how differently he thinks compared to other kids.

So I sprinted outside and told Nigel that I knew he was trying to be respectful, but that other people wouldn’t see it that way. And I told him that I didn’t want him getting splinters or poking himself with nails. He looked confused. “I’m being Jesus,” he said. “Yes, honey, I know. And you’re doing a really good job. I’m sure Jesus would be pleased. But he wouldn’t want you to get hurt on the rusty nails.” Nigel seemed to agree with that. We set the cross on the woodpile and went back in the house. And I thought, isn’t that what Christianity is really about? Being Jesus? No matter what path he’s on, I can’t help but think that Nigel’s got more figured out than I could ever realize.

Stepping Back

Little transitions – stopping an activity to come to dinner, getting into and out of the shower, a new piece of furniture – can be challenging enough to get through. And they make the big transitions – starting a new school, moving, divorce – seem incredibly daunting. And we have a really big one coming up.

Brace yourselves.

In September, Nigel starts high school. Wait – did I just write that? A mere five days ago, as I held my newborn nephew in my arms, I remembered seeing my son for the first time. Holding him, gazing at his sweet little face. How is it possible that the sweet little face now has peach fuzz on it and towers over me?  How is it possible that the five-year-old who could not say his name when asked is now pre-registering for a full day of unassisted classes at the high school?

I am, of course, filled with apprehension. But part of me is also hopeful. Two nights ago Nigel and I attended the “8th Grade Pre-Registration Night” at the high school. We ran into a good friend of his, and our families sat together. The principal gave a PowerPoint presentation and spoke about all the positive attributes of the school, including a student support system called an Advisory. It is comprised of twenty students, five from each grade level, and all students in the school are part of one. They meet weekly to discuss both academic and social issues. While this sounded very positive to me, Nigel was more excited about the opportunity to start his own club.

After the principal’s presentation, the audience split up into smaller groups to take teacher-led tours of the school. We had barely gotten started on the tour when Nigel flagged down our tour leader, the vice principal, and mentioned that he wanted to start a club for stop-motion Lego films. Only he asked it in his halting, “I-have-something-to-ask-but-my-autism-makes-me-pause-and-say-hmm-a-lot-when-I’m-nervous-or-not-sure-what-to-say” voice. The vice principal, who had just returned from coaching a softball game, got a blank look on his face for a few seconds, trying to piece together what Nigel had tried to say. I almost stepped in with a quiet “My son has autism” explanation. I’ve done that in the past whenever someone new to us has a hard time understanding Nigel. But something made me hold back this time. In the past year, I’ve tried to hold back whenever I feel that Nigel’s doing okay interacting on his own with someone who doesn’t know him. It may not be perfect, but he manages. I have to realize that I’m not always going to be there, especially at high school, to step in and wave the autism flag. There’s something liberating in the “not telling.” Because, really, a person’s response should not be influenced by knowing if someone’s autistic. Ideally, a person should respond with patience and respect regardless. They should realize that the person addressing them seems to have some difficulty expressing themselves – the reason why shouldn’t matter. And sometimes, after the quick blank look, the other person gets it. They may not know exactly what “it” is, but they know that they’re in the presence of someone who communicates differently, and that’s okay. I took a deep breath and waited for the vice principal’s response.

He got it. He gently rephrased what Nigel had said in a questioning tone to see if he was correct. Nigel confirmed with an appropriate “yeah,” and the vice principal said, “You certainly can start your own club. There’s a sheet in the pre-registration packet that tells you how to do it. That was a great question!” Then he turned and resumed leading the tour.

I exhaled and put my arm around my son as we followed the group. I wanted to high-five the vice principal and tell him that he had just made an autistic teen feel very good about himself. And that he had just made the autistic teen’s parent feel a little better about such a big transition.

Getting to Know an Autistic Teen

I got some funny searches this week: “100 count a Kindergarten,” “living in a car,” “angel of doom,” and “how to sew a wolf head.” But my favorite search this week was not, I presume, intended to be funny. And I want to give a big hug to the person who typed it in.

how to get to know an autistic teen

Wow! Doesn’t that renew your faith in humanity? Whoever you are, can we clone you? If more people wanted to get to know autistic teens, if more people realized that they have feelings and interests and personalities worth knowing and cared enough to find out how to achieve that, our kids would be a lot happier and so would we. And more people’s lives would be enhanced by knowing them. Because, verbal or not, they have a lot to offer.

So, how do you get to know an autistic teen? Your approach should depend somewhat on the teen’s communication ability. If you’re wanting to get to know a non-verbal autistic teen, your best bet is to contact the parents or caregiver first to find out what you can about the teen: likes, dislikes, things that might upset them. They might communicate with PECS or writing, or some other method. The important thing to remember is that, regardless of how they communicate, their receptive communication is usually much greater than their expressive, and autistic teens understand a lot more than people realize.

The following is a list of guidelines for getting to know an autistic teen:

  • Find out their interests, which may or may not include computers, Lego, science, history, movies, superheroes, movies about superheroes, Star Wars, Indiana Jones, etc. (Fellow parents, feel free to add to this list of interests in the comments!)
  • Don’t expect eye contact, handshakes, or hugs. At least not for a long time, in most cases.
  • Don’t use figures of speech, which tend to be confusing for literal-minded autistic teens.
  • Do expect many verbal autistic teens to speak in a monotone voice – it doesn’t mean they aren’t interested or are being rude. This type of voice is just a common trait of autistic teens.
  • Don’t expect terms of politeness. Autistic teens often forget to say thank you when you give them something, whether it’s a compliment or a gift or a piece of gum. If you ask “How are you?” they might say “Fine” but not reciprocate by asking the same of you. Conversational niceties are difficult for autistic teens to remember because most do not understand the purpose. Many try to remember to say them anyway.
  • Do be patient. Sometimes it takes a moment for the autistic teen to formulate a response.
  • Don’t expect them to talk for long periods of time in a conversational manner. You know how when someone trips a little, a friend might jokingly say, “Been walking long?” Well, some autistic teens haven’t been “talking long.” Mastering the art of conversation is something that many of them are still working on, and will continue to. They might likely end the conversation by bluntly saying, “I’m done talking now. Bye.” Again, they don’t mean to be rude. Don’t take it personally.
  • Do be aware, especially if talking outside, that autistic teens may react wildly to an insect that flies near them or to a sound that startles them or a sudden bright light in their eyes. Just accept that it’s part of who they are, and know that they can’t help it and they deal with it as best as they can.
  • Don’t feel slighted if you say hi to them in passing and they don’t respond. They’re so busy filtering all the sensory input of wherever they are and trying to organize their brain that a passing hello often won’t register until after you’ve passed them. Again, don’t take it personally. Really – they cannot help it. Many autistic teens also contend with face-blindness.
  • Do realize that even though an autistic teen may not show many facial expressions while interacting, most of them still want friends, and all of them have feelings. They probably really appreciate that you’re taking the time to get to know them and understand them, but they don’t know how to tell you that. Be persistent but respectful. They are worth it! And so are you. Take it from a parent of an autistic teen – we appreciate you more than words can say.

An Open Letter to My Son’s School Administrators

After a fifteen-month hiatus while homeschooling, Nigel started back part-time at the local public school this week. How has it gone for him? Today was Day 3, and I had to write the following email, which was sent to the school’s special education coordinator, the district’s special education director, the regional autism consultant, and his social skills class facilitator:

Everyone,

I wanted to bring a concern of mine to your attention. Today when I picked Nigel up after lunch, he came out to the car twirling around in the parking lot with a sheepish look on his face. Apparently a group of girls had been hanging around him at lunch, and they told him that another boy had “stolen” someone’s cookie, and that he – Nigel – needed to “do something about it,” even though Nigel had nothing to do with the situation (which I think was contrived). So Nigel said that he chased the boy around to impress the girls, because they encouraged him to. This is just the sort of social problem that causes concerns. Nigel is usually fine in class where it’s structured and supervised, but these problems come up at lunch. The kids are not overtly being mean, but they take advantage of both Nigel’s trusting nature and his yearning to be accepted, and they get him to do things that either make a fool out of him or get him in trouble. After Nigel had chased the kid around, one of the girls linked arms with Nigel and walked somewhere and kissed him, in front of others. These kids are having fun at Nigel’s expense, even though he doesn’t realize it because of his autism.

So I talked with him about a) not chasing anyone around for any reason, and b) not doing things kids tell him to do when he’s at lunch. If this continues, not only will he wind up getting in trouble, when it was not his idea in the first place, but it’s continuing a vicious cycle of using him for entertainment – he told me that the girls actually told him that he was “entertaining.” I do not want my son used in this manner! This has happened before at this school, and I’m upset about it happening again. Is it possible for situations like this to be roll-played in the social skills class? Nigel needs to be able to recognize when his peers are using him for entertainment, since the school doesn’t seem to think it’s important to teach the non-autistic kids not to take advantage of those with social difficulties.

The risperidone is helping Nigel, and he is making such an effort, is so motivated to get back, and he has to deal with kids who try to make a fool of him and get him in trouble. This is why I mentioned the Circle of Friends program at the meeting last week, and why I think it’s so important to implement something like that. The school needs to foster awareness and compassion for students with social difficulties. No one would dare treat someone that way who’s in a wheelchair, so why does the administration say things like “this is a hard age” when someone who does not have a visible disability is targeted? This issue needs to be addressed. I realize that Nigel will be moving on from this school soon [because he is in 8th grade], but he has four more years in this district with the same peers, and there are others coming after him who would also benefit from a program like Circle of Friends. How can we go about setting this up?

Thank you,

Tanya Savko

The good news is that within a half an hour, the district special education director sent me a very supportive response thanking me for notifying her, telling me that she would meet with the school principal tomorrow, and, most importantly, assuring me that she is “committed to making this work for Nigel.”

It sometimes takes awhile – we were having these school issues two years ago – but the squeaky wheel eventually gets the grease.

When Talking Is a Problem

For my recent trip involving air travel, Nigel accompanied me to the airport before I left. He flew for the first time three years ago, and he loved it. I had brought ear plugs for him, and he didn’t even use them. He was far too excited and motivated to have mechanical noises bother him that time. He loves to learn about other countries, reads National Geographic every month, and longs for the day when I “sell lots of books” so that I can take him to see Stonehenge and the Acropolis, among other places.

And so, he loves to be in airports, which he doesn’t get to do very often. Being an extrovert, he wants to interact with people. I could not have guessed however, that upon entering the airport he would have made a beeline for the guard at the entrance to the security check area. I had my bags and was giving instructions to my mother, who watched the boys that weekend, and I didn’t notice that Nigel had taken off until I scanned the area and saw him leaning in to the guard and saying something. Like a rabbit caught in the headlights, I froze. The guard had an odd look on her face.

Nigel walked back over to me. “I told her to keep up the good work because we don’t want another 9/11,” he said, satisfied with himself.

How could he have known? How could he have possibly known that what he’d said was unacceptable talk in an airport? How could I have thought ahead to tell him not to say things like that? I spend at least half my time anticipating inappropriate things that Nigel could say and then explaining to him that it’s not okay to say them. Saying inappropriate things can be a huge problem for the verbal autist, even a liability. It can hurt people’s feelings and actually get him in trouble, especially since he rarely makes eye contact and often speaks in monotone. I try to circumvent these potential problems by thinking ahead and coaching him, really trying to understand his way of thinking, anticipating what he might say, and helping him to avoid saying the wrong thing.  

I mentally wrung my hands, hoping that we wouldn’t have a security squad swooping down on us at any second. And my heart ached for my poor son who was just trying to make conversation, who absolutely did not mean any harm.

“Oh, honey,” I began, “I know you thought you were trying to encourage the guard, but it’s not okay to talk about 9/11 in airports. It alarms the security guards because they think of it as a threat or a joke, even though I know you didn’t mean it that way.”

A dejected look washed over his face. “I thought I was doing something good. I was telling her she was doing a good job.”

“I know, sweetheart. But they might not see it that way, and it could get you in trouble to talk about 9/11 in airports. So try not to do it anymore.” I looked around, wondering if the guards had their eyes on him. I had to keep him close to me, this boy who is taller than I am. Maybe somehow, if they saw a mother sticking close to her teenage son, they would know. They would see his “difference,” as he calls it.

“I didn’t know,” he said, looking down.

“I know. I wish I had thought to tell you, but I’m telling you now. I know it’s hard to understand, but you just can’t talk about 9/11 in airports, even for good reasons.”

“Okay,” he said quietly, seeming to understand, or maybe just accepting it without understanding.

Oh, my son. He tries so hard.

One of Ours

I’ve done a bit of traveling – certainly not as much as I’d like, but enough to know not to try to shove a huge carry-on into the overhead compartments of a smaller plane. For that matter, my trip last weekend was a mere overnighter, and my stuff wouldn’t even fill one of the smaller rollers with the telescoping handles. I had three planes to board on the way there, and two on the way back. Five planes in the space of 36 hours. As I boarded plane number three at 5:30 AM, having been on planes or in airports since 6:30 PM the previous evening, I was tired and not in the mood for unsolicited comments.

I stepped into the plane and began making my way down the aisle, looking for my row, which was near the front that time. It was one of the smaller planes, but I figured I should still be able to fit my pliable bag with a change of clothes and a couple of paperbacks up in the bin. I lifted it up and was surprised to find that I could not wedge it in. I turned it to the side and it still wouldn’t fit. What kind of carry-ons were they expecting people to put up there – fanny packs?

I heard a woman’s voice behind me say, “It seems to be oversized.”

Before I even turned around I knew what I wanted to say. My bag was well within the size limits for carry-on luggage. In fact, it was considerably smaller than any other carry-ons I had seen. It didn’t even have wheels! I wanted to say, “It’s not ‘oversized;’ this compartment is too small! My bag is definitely smaller than anyone else’s carry-on!”

I turned around and saw a woman who appeared to be in her fifties sitting in her seat across the small aisle from me. And then the non-confrontational tone of her observation hit me, and I somehow knew. It came to me in an instant. She was one of ours. There was nothing else about her that would have “given it away.” It was just her tone. My radar kicked in, and I realized that she was merely making an observation. She was not suggesting that I had ignored the size regulations for carry-on luggage. She was not passing any judgments. She was simply commenting on the situation as it appeared to her.

“I’ll just put it under the seat,” I said as I turned around and sat down. If she responded, I didn’t hear her.

I watched her a little bit during the flight. She read a book, got up and went to the lavatory once. (‘Lavatory’ always sounds funny to me.) Whenever I caught her profile, I didn’t see much emotion on her face, but that tends to be the norm with people traveling alone. There was nothing else about her that could confirm my theory about her neurological status. But her voice, her tone, her choice of words – that was enough.

So as I’m making dinner tonight, I call Nigel in the kitchen to do one of the chores that he alternates with Aidan – unloading the dishwasher. Usually he balks at it, but he’s compliant this time, probably because I had allowed him to buy a small cat figurine at the store this afternoon. He comes in, begins putting the dishes away, asks me where a strainer goes, and he remembers on his own before I can answer him. Then he holds up the serving spoon that matches the silverware set and turns to me.

“It seems to be oversized.”

Yes. He does. He says the same exact words in the same exact tone as the woman on the plane. I feel the hair stand up at the base of my neck. I quickly regain my composure and tell him what it is and where it goes. And then for the second time I am really glad that I hadn’t been argumentative with the woman on the plane. I am glad that I waited that split second for the recognition to dawn on me before I spoke. I am glad that I had just let her make her observation and left it at that. She’d probably had many negative experiences with people yelling at her and correcting her. I know because of my son. I have learned so much from him. Patience, for one. Open-mindedness.  Compassion. And I’ve learned that I don’t always have to be right. After all, if you look at it logically, my bag was oversized for that compartment. How could I have argued with that?!

Our Jetson Life

It was back-to-the-grind today, after a 3-day-weekend suspension of reality. Back to school (for Aidan), work (for me), and homeschool (for Nigel and me). And back to Nigel’s hourly teenage lament: Why me?

It’s not, as I initially thought, concerning his disdain of having autism/being autistic. At least not yet – I’m sure that will come up in another year or so. His “why me?” does not extend to big-picture malaise at this point. Right now he’s more put out by two things: getting a problem wrong on his schoolwork and having to pick up after himself. And I’ve heard “why me” enough times to wonder if it’s simply echolalia. He heard it somewhere and he keeps repeating it.

In a sense, why me? is typical – a declaration of universal teenage angst. I distinctly recall moaning it as a teenager when I had to switch high schools in the middle of junior year. Or when I felt a big zit forming (which was far too often). But I wouldn’t question why me? if I missed a homework problem, and especially not about picking up after myself. What is up with that? The schoolwork I can understand. It’s not a self-esteem issue with him. He’s not saying “Why me?” because he thinks he’s not smart enough. He’s saying “Why me?” because he doesn’t want to do the work over again. He already did it. He hated it the first time. His hand still hurts, and he doesn’t want to do it again.

We get the why-me?s in adulthood too, of course. When we get in a car accident or get a speeding ticket. When we lose our job. When a spouse leaves, can’t deal, or dies and we have to raise children alone. When we get cancer. When our child is diagnosed with autism. When we think we’ve accepted the autism but our child’s school has called us at work three times in one week to tell us that our child needs to be picked up because of behavioral issues and so we ask, why me? Why me?

I’m sure that in the mind of an autistic fourteen-year-old, his why-me?s are just as valid as an adult’s. Picking up after himself on a daily basis is just like having to do schoolwork over again. He just did it, and now he has to do it again. Why me becomes a refrain, a battle cry even. His autistic mind cannot accept the fact that picking up after ourselves is part of daily life. It is a life in which he craves social interaction, but not society. Not with its standards and expectations. He doesn’t understand why these things must be so, nor does he care. When I maintain that we pick up after ourselves because we are not animals, he retorts, “But we descended from apes!” I don’t see a way out of this one, even after I point out that not everyone agrees with that theory.

“Then we should have robots do the picking up,” he says with certainty, convinced that this straightforward idea solves everything and should be implemented immediately. As if it were feasible.  As if we had a robot just taking up space in the hall closet, and it was a simple matter of just taking it out and turning it on, and it would be programmed to pick things up and put them where they belong. Who are we, the Jetsons? Are we living on the Sci-Fi Channel? Is it 2409?

I just have one more question. Why me?