Commentary

I see how they look at him. 

My 20-year-old son Mickey sits cross-legged on the bench in the neurologist’s office. A teenage girl and her mother sit catty-corner. I see the girl’s eyes widen, and she smiles at him. She’s eyeing him as if she thinks he’s cute. Can she possibly be—flirting? 

Mickey doesn’t look at her. Instead, he opens an oversized workbook called “Social Skills Activities for Special Children.” It’s left over from sixth grade, but he still loves it. He reads aloud, laughing a little too loudly. The girl glances at her mother: the look they exchange is unmistakable. I can practically see a cartoon thought bubble forming above her head: 

What’s wrong with him? 

The girl’s flirtatious smile fades to pity.   

A nurse appears. Mickey covers his ears. He crouches like a school kid in a duck-and-cover drill. “Don’t say my name!” He’s afraid the nurse is about to call him; he’s been fretting about this for weeks. He’s not happy being here. He hates having to have yet another EEG. I’ve promised over and over they won’t call his name. As soon as we checked in I made sure to tell the receptionist. 

The girl whispers something to her mother. I wonder why she’s here. This isn’t an ordinary waiting room. She’s not here for a flu shot. This is the Epilepsy Center. There are children here wearing seizure helmets. 

Mickey laughs to himself again. The girl darts sidewise glances. Then from across the room, I hear a man’s irate and sibilant hiss. “Shush!” 

 Even here? 

I bristle. Yes, Mickey is too loud. Sometimes he has trouble modulating his volume. 

“Mick?” 

“Yeah, Mom?”

“Quiet voice, please.” I pat the air in that downward motion that signals him to speak more softly. 

Welcome to Autism Awareness Month. 

Yes, it’s April again, that cruelest month. The one where everyone talks a good game about Autism Awareness. 

But what I’m most acutely aware of today is how people look at him. Still. After all those blue light bulbs and puzzle piece car magnets and T-shirts and rubber bracelets. I’m painfully aware of the stares. And the trying-not-to stares. I don’t know if Mickey notices, but I do. The way they look at my son. It pierces my armor, slicing straight to the heart. 

Maybe they’re just staring because people do that. Anything out of the ordinary catches the eye; it’s a primitive itch. Twenty years ago, I might have looked too. 

I don’t want to care so much that they stare. 

But I do. 

I’m the one who always tells other parents to ignore the stares. Who cares what strangers think? I say. 

But I lie. It still makes me shrivel. 

On a good day I tell myself that those stares are actually ones of understanding and support. Other days, the looks feel accusatory: Why can’t you just control him? 

But what cuts the most is the welling up with tears, there-but-for-the-grace-of God-go-I Tragedy Look.  

Because here’s what those people aren’t seeing. Mickey’s sweetness.  His sideways hugs. His silly sense of humor. The joyful way he confides, “I have delicious news.” How fiercely I love him. 

So here we are again, back at April and Autism Awareness Month. In yet another doctor’s waiting room. If I were a bigger person maybe I’d view this as a teachable moment; start a conversation about autism. 

Instead, I wait quietly for Mickey’s name to be not-called. Silently, the nurse appears and gestures; we stand. “Come, honey,” I say. “It’s your turn,” and we traipse past the staring girl, and her mother, and the man who hissed at my son.

I’m tired of wearing ribbons. Awareness? We’ve been working at that for years. What about acceptance?

Because I see the way you still look at him.

I see how they look at him. 

My 20-year-old son Mickey sits cross-legged on the bench in the neurologist’s office. A teenage girl and her mother sit catty-corner. I see the girl’s eyes widen, and she smiles at him. She’s eyeing him as if she thinks he’s cute. Can she possibly be—flirting? 

Mickey doesn’t look at her. Instead, he opens an oversized workbook called “Social Skills Activities for Special Children.” It’s left over from sixth grade, but he still loves it. He reads aloud, laughing a little too loudly. The girl glances at her mother: the look they exchange is unmistakable. I can practically see a cartoon thought bubble forming above her head: 

What’s wrong with him? 

The girl’s flirtatious smile fades to pity.   

A nurse appears. Mickey covers his ears. He crouches like a school kid in a duck-and-cover drill. “Don’t say my name!” He’s afraid the nurse is about to call him; he’s been fretting about this for weeks. He’s not happy being here. He hates having to have yet another EEG. I’ve promised over and over they won’t call his name. As soon as we checked in I made sure to tell the receptionist. 

The girl whispers something to her mother. I wonder why she’s here. This isn’t an ordinary waiting room. She’s not here for a flu shot. This is the Epilepsy Center. There are children here wearing seizure helmets. 

Mickey laughs to himself again. The girl darts sidewise glances. Then from across the room, I hear a man’s irate and sibilant hiss. “Shush!” 

 Even here? 

I bristle. Yes, Mickey is too loud. Sometimes he has trouble modulating his volume. 

“Mick?” 

“Yeah, Mom?”

“Quiet voice, please.” I pat the air in that downward motion that signals him to speak more softly. 

Welcome to Autism Awareness Month. 

Yes, it’s April again, that cruelest month. The one where everyone talks a good game about Autism Awareness. 

But what I’m most acutely aware of today is how people look at him. Still. After all those blue light bulbs and puzzle piece car magnets and T-shirts and rubber bracelets. I’m painfully aware of the stares. And the trying-not-to stares. I don’t know if Mickey notices, but I do. The way they look at my son. It pierces my armor, slicing straight to the heart. 

Maybe they’re just staring because people do that. Anything out of the ordinary catches the eye; it’s a primitive itch. Twenty years ago, I might have looked too. 

I don’t want to care so much that they stare. 

But I do. 

I’m the one who always tells other parents to ignore the stares. Who cares what strangers think? I say. 

But I lie. It still makes me shrivel. 

On a good day I tell myself that those stares are actually ones of understanding and support. Other days, the looks feel accusatory: Why can’t you just control him? 

But what cuts the most is the welling up with tears, there-but-for-the-grace-of God-go-I Tragedy Look.  

Because here’s what those people aren’t seeing. Mickey’s sweetness.  His sideways hugs. His silly sense of humor. The joyful way he confides, “I have delicious news.” How fiercely I love him. 

So here we are again, back at April and Autism Awareness Month. In yet another doctor’s waiting room. If I were a bigger person maybe I’d view this as a teachable moment; start a conversation about autism. 

Instead, I wait quietly for Mickey’s name to be not-called. Silently, the nurse appears and gestures; we stand. “Come, honey,” I say. “It’s your turn,” and we traipse past the staring girl, and her mother, and the man who hissed at my son.

I’m tired of wearing ribbons. Awareness? We’ve been working at that for years. What about acceptance?

Because I see the way you still look at him.

Hurray for having an 18-year old-son! At least that’s what I keep trying to tell myself. Even though Cameron is very different from many 18-year-olds, I am making a concerted effort to treat him like an 18- year-old … whenever feasible.

Last weekend was a prime example of my having to make a conscious decision to let Cameron be 18. Cameron went to see an R-rated movie, and it wasn’t rated R for violence or language, if you get my drift. But that’s what 18-year-old boys do, right? He purchased the ticket online, and I only assisted a teeny bit. He’s been through this process before, and it caused a bit of stress when it came down to collecting the ticket at the theater. This time he printed the ticket at home, and there was a look of pride on his face when the paper spit out of the printer. This look of pride was only spoiled when I asked him how he was getting to the theater. He clearly hadn’t thought this through … or rather, he had thought this through, and assumed I would be willing to drive him. That’s what 18-year-old boys do, right? Well he assumed wrong, so off he went on a 45-minute bike journey. When he returned home, he quickly got ready for work, and left the house again. He was getting his hair cut before work, so he left much earlier than his regular departure time.

When he returned home from work, he walked into the living room wearing his bike helmet and a sheepish grin. I asked him as he walked past me on the way to the coat closet why he had that look on his face. After he put his helmet in the closet and poked his head around the corner, I immediately knew why. His gorgeous, to-die-for strawberry blond hair was gone, and in its place stood about a quarter-inch of prickly stubble! I wish I had a picture of the look on my face, because I can only imagine it to be quite humorous. Everything sort of slipped into slow motion as a hundred thoughts clicked through my head: Who is that grinning at me? Oh my gosh, he shaved his head! I can’t believe someone did that to him! I’m going to go there and complain! What a minute! It’s only hair it will grow back. And it looks … actually it looks pretty good. He looks grown up! Especially with that look of pride on his face.

Cameron made a decision, executed his decision, and was proud of the results. That made me completely proud of him. The next day, he decided to take his bike on the Metro so that he could get to a restaurant he had wanted to go to for lunch. From his lunch destination, he would ride his bike to a video arcade, and then take the Metro home. When he told me his plan, I was a little reluctant. After all, the thought of getting a bike down the escalators and on a crowded train causes my anxiety level to go up a notch or two. But that’s what 18-year-old boys do, right?

At dinner that evening, Cameron wasn’t just a part of the conversation, he was driving the conversation. He was downright chatty, telling us about his day unprompted, asking pertinent questions of others. Smiling. Chatty. Proud. I really and truly am the mother of an 18-year-old boy. Isn’t it great?

Hurray for having an 18-year old-son! At least that’s what I keep trying to tell myself. Even though Cameron is very different from many 18-year-olds, I am making a concerted effort to treat him like an 18- year-old … whenever feasible.

Last weekend was a prime example of my having to make a conscious decision to let Cameron be 18. Cameron went to see an R-rated movie, and it wasn’t rated R for violence or language, if you get my drift. But that’s what 18-year-old boys do, right? He purchased the ticket online, and I only assisted a teeny bit. He’s been through this process before, and it caused a bit of stress when it came down to collecting the ticket at the theatre. This time he printed the ticket at home, and there was a look of pride on his face when the paper spit out of the printer. This look of pride was only spoiled when I asked him how he was getting to the theatre. He clearly hadn’t thought this through … or rather, he had thought this through, and assumed I would be willing to drive him. That’s what 18-year-old boys do, right? Well he assumed wrong, so off he went on a 45-minute bike journey. When he returned home, he quickly got ready for work, and left the house again. He was getting his hair cut before work, so he left much earlier than his regular departure time.

When he returned home from work, he walked into the living room wearing his bike helmet and a sheepish grin. I asked him as he walked past me on the way to the coat closet why he had that look on his face. After he put his helmet in the closet and poked his head around the corner, I immediately knew why. His gorgeous, to-die-for strawberry blond hair was gone, and in its place stood about a quarter-inch of prickly stubble! I wish I had a picture of the look on my face, because I can only imagine it to be quite humorous. Everything sort of slipped into slow motion as a hundred thoughts clicked through my head: Who is that grinning at me? Oh my gosh, he shaved his head! I can’t believe someone did that to him! I’m going to go there and complain! What a minute! It’s only hair it will grow back. And it looks … actually it looks pretty good. He looks grown up! Especially with that look of pride on his face.

Cameron made a decision, executed his decision, and was proud of the results. That made me completely proud of him. The next day, he decided to take his bike on the Metro so that he could get to a restaurant he had wanted to go to for lunch. From his lunch destination, he would ride his bike to a video arcade, and then take the Metro home. When he told me his plan, I was a little reluctant. After all, the thought of getting a bike down the escalators and on a crowded train causes my anxiety level to go up a notch or two. But that’s what 18-year-old boys do, right?

At dinner that evening, Cameron wasn’t just a part of the conversation, he was driving the conversation. He was downright chatty, telling us about his day unprompted, asking pertinent questions of others. Smiling. Chatty. Proud. I really and truly am the mother of an 18-year-old boy. Isn’t it great?

Who here likes lunch? Anyone? Well, I have to admit I’m something of a lunch-a-holic. It’s one of those meals where, reliving my college years, I always looked forward to. Waking up at 11:30 a.m. every day, I would skip the cereal and sweet rolls most days and go straight for the lunch foods—homemade macaroni and cheese, chicken fingers, deli sandwiches, etc. Those were my go-to foods and I LOVED IT! 

Now, that I’m getting into the whole full-time job rhythm though, I’m realizing how even more important lunch has become to me. Working an eight-hour day, I look EXTREMELY forward to those 30 minutes each day not only for my food love but also to relax and give myself time to unwind. 

This realization day after day has made me want to explore just how huge this topic must be for the typical autistic adult in the workplace. If you are in a full-time job like me there can be a long list of variables involved with this process. If there was ever a toolkit made about this I think you would have the consider the following topic: 

Never Skip Breakfast: This is the most important consideration. You never really know when a curveball can be thrown into your daily schedule so eating to put something in your stomach is key. 

Time of Lunch: Is the time of your lunch consistent every single day? If not, does it throw you off your schedule to have to eat at different times? Scheduling will always be key here. Something that helps me is to write a to-do list every evening for the day ahead. Having that type of list handy always makes a huge difference in knowing how to address each day. 

Of course, things will pop up during those days so it’s also important to be mindful of that by remembering to take short breaks during the work day in case you are feeling overwhelmed. 

Inside/Outside Lunches: This is one of the harder areas I’ve seen with adults in general. Many people are very comfortable with just eating at the same place—usually in a lunchroom or at their desk every single day. But what about those times when that individual wants to venture out? What about at other times when a co-worker offers to take you out for lunch/buy lunch for the office? 

One thing I’ve always enjoyed is using Google Maps to check out the area around me. I did this before I actually started my job.  It was an important tool to help with processing everything from what cross streets were nearby and how I would get to work from the train to nearby places for lunch. 

Asking People to Lunch: I’ve always found there are some dos and don’ts to this. For one, I think it’s absolutely important to network and reach out. At the same time though, it’s also important to do your homework when it comes to approaching people. The best thing to do is to bring a back-up lunch on the first couple of days and then to possibly ask your co-workers before you reach out to people in other departments. Initiating lunch invitations should be based on your comfort level in the situation while also making an effort to expand your work relationships. 

An appropriate person to ask out to lunch will always be someone who you are on the same level with in terms of a job position. (For example, if you are both interns, working in a marketing department, working under the same boss, etc.) Once you make this first connection you can judge for yourself whether or not a similar approach with someone else may work as well. 

All of these things considered, I really do think this topic should be addressed in lessons for adults with autism. It took me until now to really grasp the impact it can have on a day and why it should be discussed within our community.

“Oh, you’re so pretty, so pretty,” I cooed to Bootsie, our kitten. She chirped and purred in response. “You’re my beautiful kittenfish.” As I stroked our cat’s soft fur, I couldn’t help but smile. I’ve always wanted a cat, always wanted to say such overwrought things to a pet of my own. My husband watched us, and asked, curious, “What is with you and the ‘beautiful kittenfish?’ What’s that about?” 

I wasn’t surprised at the question; I’ve wondered the same thing myself. The words came into my vocabulary spontaneously; I had no memory of where the phrase came from originally. “Well,” I said, digging through my mental archives, “All I know is that it’s something Willie says, so it probably comes from a video. Maybe ... Dr. Seuss? I think that’s right. And he always used to say it in a singsong voice, so I’m pretty sure it’s part of a longer song. We’ll have to ask him when he comes to visit next week.” 

Fast-forward several days, and my family is gathered together around our dining table in Alabama. Their long-awaited visit is actually happening, and an air of festivity and gladness pervades the space. So far, Willie’s been cheerful and calm, with no evidence of agitation. He seems to be enjoying the visit in his own way. I’d been concerned that the travel and break in routine would be detrimental, but Willie seems just fine. I make efforts to draw him into our conversation now and then, but mostly, he’s content to keep to himself. He sits with us for meals, then takes off for some alone time. He plays his hand-held electronic word game or uses my computer to watch videos when he wants to take a break and retreat. 

And when he sits on our couch, game in hand, Bootsie comes over to sniff his neck. She tiptoes tentatively behind his back on the cushions, unsure if it’s safe to come closer. Both parties are a bit fearful of the unknown other, yet intrigued as well. After a few more sniffs, the cat draws near. In turn, Willie takes the risk of reaching out to pet her, but his hand is too tentative for her taste; she spots it, and playfully bats him away. We can’t help but laugh as the cat skitters off, and Willie shakes out his hand. 

Watching them together reminds me of my earlier question, and so, when my brother returns to the table, I say, “Willie, I’ve been wondering: What video does the ‘beautiful kittenfish’ come from?” 

He responds immediately, as if it should be obvious to all: “Dr. Seuss’s ‘The Cat in the Hat!’” 

“Oh, OK!” I say. “It’s a song, right? How does it go? Could you sing it?” 

Without hesitating, he launches into his own rendition of, “Beautiful Kittenfish,” right there at the dinner table. I sit still, amazed by how sweet his voice sounds. He knows every word, and he sings them with gentleness and care. As it turns out, the song is a lullaby; I never knew. Later on, when I look up the original 1971 cartoon, I see that the Cat in the Hat sings the song in an attempt to lull his (very grumpy) pet kittenfish to sleep. 

Perhaps it's simply an excellent imitation of the Cat in the Hat, but there is a tenderness in Willie’s voice I haven’t heard before. During the song, he isn't staring off into space; instead, he makes eye contact with me throughout the lullaby. And though everyone is listening, he focuses his attention on me. He is performing, to be sure, but what I experience is certainly not a rote memorization. The best way to describe it is to say that he puts his whole heart into every word. 

This being the case, what keeps me from crying are the lyrics themselves, which are pretty silly:  “Beautiful kittenfish / Sleep, baby, sleep / Your eyelids are droopy / Bloop, bloop, bloop, bleep, bleep...” 

And so on. It’s a ridiculous song, but as Willie sings, it transcends its goofy lyrics and becomes something more. In fact, right here, in this moment, it's the best music I’ve ever heard.

My in-laws and I have known each other for over a dozen years—and some of those years were before I'd even heard of AS. They've put up with quite a bit from me. 

Including when they've had me over for dinner. Mealtimes are perhaps the ultimate social occasion, and for an Aspie like me they provided lots of chances for me to upset others, before I learned a few little cues. 

For one thing, my favorite form of stimming has been pacing. Back and forth. 

Back and forth. Forth and back. Back and forth. Forth and back. Back and forth. Forth and back. 

At dinner, as soon as I was done I used to just get up and start pacing around even before anyone else was done: 

Mother-in-law: “So, congratulations, Emily, on winning that award! Jeff, would you like more lasagna? By the way, how's that business website of yours coming along Jeff?” 

Me: “Oh no, I'm stuffed. Thanks though!” I push back from the table, get up, and start pacing. 

Breaking family dinner down to its basic components: It's a table, with a bunch of people sitting around it who might or might not be related, and there's food. So why not leave as soon as you're finished eating? (Yes, people sometimes talked around the dinner table. So what? People can talk anywhere, right?) I had it all figured out, logically ... just like since a tomato is classified as a fruit, it should go into fruit salad. This is the textbook case of “outsmarting yourself.” 

I've sometimes tended to just ask myself: “What's logical?” instead of “What's socially accepted?” or “What would please (or tick off) everyone else?” Not so much because I've made that conscious choice (though there's that element too), but also because sometimes logic is the only thing that occurred to me. The socially accepted thing, and the emotionally (un)welcome thing, often are never written down or even spoken, so sometimes the logical thing was the only guide I had. 

Not that that made everyone else feel much better. 

I've got Emily to thank for pushing me on this one. Not only did she force me to learn about AS in the first place, but also she made me understand that certain behaviors were simply appropriate and others simply not appropriate, at least around their family dinner table. 

And now, after a bit more practice (and quite a bit of patience on everyone's part), it's more like: 

Mother-in-law: “Emily, congratulations on winning that incentive award at work! Jeff, would you like some more lamb?”

Father-in-law: “By the way, Jeff, how's it going with that course you're teaching?”

Me: “Thank you, but after having seconds already I'm stuffed. Great lamb, my compliments to the chef! The course is going pretty well. Midterms are coming up and I'll need to grade them over the weekend so the students will get them back in time to decide by deadline if they want to withdraw. Of course, I can't say anything about individual cases, but I'm pretty sure a few will want to at least consider withdrawing to save their GPAs. By the way, I remember you mentioned that reorganization project in your office ... how's that coming along?” 

Emily (at home, a couple of hours later): “Jeff, they really liked having you over and hope they can see you again soon. That makes me feel good, too!” 

So, whether you're an Aspie or autist trying to get and keep more friends, or a parent who wants the same for your Aspie or autistic son or daughter, keep in mind: 

  • Pleasing others can be an upward spiral ... for example, if you make your girlfriend's or wife's parents happy, you often make her happier too. And if you make more friends, they can introduce you to their friends too.
  • People actually like to talk at the dinner table as well as eat. So, if everyone else is still at the table talking, stay yourself and join in the conversation as much as you can ... at least when asked to talk.
  • Compliment the food whenever possible. When people cook, they take pride in their food and if you show you like it, that implies you like them and it helps them like you too.
  • When conversing, don't just answer. Ask a question or two, because it shows interest in the other person. Bonus points if you can ask about what they told you previously, because it shows you're listening.

They danced like no one was watching.  With abandon.  And exuberance.  And energy.  And joy. They jumped in unison, put their hands in the air, sang along to the pop music that defines their generation. Like young college students everywhere on the planet. And there was my son in the middle of it all, on the dance floor, celebrating youth with his peers. 

It was the New York Institute of Technology's Vocational Independence Program annual alumni/parents/students dinner dance at the Sheraton Long Island last Saturday night. It started at 7:30, and by 10:00, due to some unseen kitchen glitches, dinner still had not been served. Parents and faculty were long past restless, bordering on cranky. The kids didn't care. 

From the beginning they crowded the dance floor. The DJ kept asking them to take their seats so the servers could take their dinner orders. Some did, briefly, but couldn't stay seated long. Another of their favorite songs was playing and they jumped up, grabbed their friends and ran back to dance some more. Some couldn’t take the crush of bodies in the center, but boogied on the edges just as happily. 

How many of these young people, I wondered, had experienced rejection, bullying even, in their young lives? How many had lived life on the periphery in their high school years? And here they were, dressed to the nines, some of the boys with precariously tied ties, girls in heels they had to kick off to dance, reveling in friendship and music and movement. Or, as my husband observed, "looking like every rural Iowa high school dance I ever went to in the 1970s." Only these kids were less self-conscious. 

Dinner came, at last. They ate quickly, and rushed back to the dance floor. Reilly, who would normally be a reluctant dancer, was held captive on the floor by his cute, petite girlfriend, Ashley. Grinning from ear to ear.  He was wearing gray dress pants fresh from the dry cleaner, a sage green buttoned-down shirt and a blue and green tie (expertly tied by Olivia, one of the sophomore girls). He looked handsome and, even more amazingly, comfortable in grown-up clothes. He's doing better with his razor. He smelled good. (We won't talk about the state of his dorm room, or the fact that his toothbrush was mysteriously located still in the suitcase he brought back from spring break two weeks ago.) 

Dessert was announced and the dance floor emptied. Apparently, Reilly is not alone in his love of chocolate cake. But it didn’t stay empty for long, and soon the music was pulsing, colored lights were flashing, kids were moving. Adults were heading to the door, but the students were going strong. We tracked Reilly down in the middle of the action again to say good night. He would take the bus back to the dorm, while his Dad and I stayed at the hotel.  He wouldn’t let us leave, though, until he had introduced us to each of the teachers who were still in the ballroom. They all told us how much they enjoy our son, how well he's doing, how far he's come, how funny he is. 

It was music to our ears.

Are you sick of hearing about Facebook chief operating officer, Sheryl Sandberg, and her "Lean In" movement yet? Yeah, me too. But … has anyone besides me stopped to ponder how the COO of a company whose stock price is far below expectations has had time to write a book? And go on a nationwide tour promoting this book? And be home in time for dinner with her children? If I had to guess, I’d say Ms. Sandberg has a lot of people she’s been leaning on while she’s been leaning in. This concept of having someone to lean on has led me to consider my own decisions with regards to balancing my career and my family life.

The issue of balancing career and family has been in the news quite a bit lately, starting with a pregnant Marissa Mayer becoming CEO at Yahoo, continuing straight on through Sandberg’s book release. There seems to be this emerging pressure for us to “solve” these balance issues as a society and find perfect harmony in our lives. Well, good luck with that. Parents of children with autism spectrum disorder are all too familiar with balance issues, only instead of merely balancing career and family, it becomes a matter of balancing career, family and autism. And if you try lean in to any one of those components too far, you’re likely to end up flat on your face. In order to have any hope at a successful balancing act, you not only have to have people you can lean on, but you must be someone others can lean on as well.

Throughout my personal experience, there have been times when I have leaned into my career, times when my family was my priority, and yes, times when autism took the front seat. When I started my career just out of college, I was all about leaning in and making the most of working in the fast-changing IT field. Before long I was married, and held the title of primary income provider. I was a young woman, earning more than my husband, and never felt held back by my gender, or anything else for that matter. It wasn’t too much longer when Cameron came along. I took six whole weeks of maternity leave, (three of them unpaid) and returned to work slightly conflicted, but did what I had to do. Soon I found myself the single parent of a toddler with newly-diagnosed learning disabilities. My career, whose ranking in priorities had been slipping since Cameron’s birth, became even less of a priority. I made the decision to become a mother that my son could lean on and leaned out of the workforce. I created a situation in which I could work part time and still get by. I sold vested stock options, I cut back on everything, and did what I had to do to make it work. I eventually remarried and things with Cameron became more automatic. There have since been opportunities for me to lean back in to the workforce, but instead I have leaned in to my family, and been a support they could all lean on. It may be a rub against the feminist doctrine, but I’m happy with the life decisions I’ve made, and refuse to feel guilty about my title of “stay-at-home mom.” 

As far as balance goes, it all comes down to setting personal priorities and making decisions that support those priorities. Asking society as a whole to solve these uniquely individual issues is not the answer. But if we as individuals find our own solutions for achieving the perfect balance, society will begin to adjust to those solutions, and more and more solutions will begin to emerge. And hopefully, one day, a mom who homeschooled her autistic son because there were no other viable options will be revered by society just as much as a woman with multiple degrees from Harvard and a Silicon Valley pedigree.

Bill and I love Cody immensely. And so much of the time we feel as though we should not exclude Cody from any part of our lives. We enjoy having him with us wherever we go. We even miss him when he’s gone with other family members. But we have let those feelings override our need to spend time together as a husband and wife should.

I’m talking about things as simple as just the two of us going out to dinner. Even when Cody spends the night with his grandparents, we have neglected to see that as an opportunity to sit on the sofa and spend time talking or just going out for ice cream at the local drive-in. When we get up in the mornings we may exchange conversation but we often wait for Cody to get up so we can spend time together as a family when we could have been sharing a cup of coffee on the patio together as a couple.

If others were to be able to see how an average day goes in our household, they may be led to believe that Bill and I were more like brother and sister who share a responsibility in Cody’s care instead of husband and wife who love our son dearly, but who also share a deep love for each other as well. In reality, this isn’t the case at all. Bill and I actually love each other very much.

Bill and I have talked and we both agree this is something that we need to address. But we’re going to have to get a little more creative about it. For us, it’s not as simple as calling up the girl next door to see if she is free to babysit Friday night. First of all, when you live in a rural area your next-door neighbor may live a good distance away from you. Just like you, they often have jobs outside their farms and lead very busy lives; maybe you have had a chance to get to know them and maybe you haven’t. But even if you’re like me and have siblings close by, circumstances still may not be right. I trust that my brother and sister both would do their very best to care for Cody and make him feel safe and loved. But they too have busy lives and their availability is limited. And neither of them has spent a great deal of time around Cody and wouldn’t know how to interpret a lot of what he says, his moods and what his actual needs might be.

There are respite services available. Some are in the form of daycare, which we are not in the market for. There are also respite caregivers who would be available to come to our home to stay with Cody for a few hours so we could have some time to ourselves. While we have always depended upon family members thus far for those rare nights out, we will be investigating candidates from those providers, as well as whether or not we can fit such services into our budget.

In the meantime, it is ultimately up to Bill and me to make time for us to be alone. First, we have to get past the feeling of guilt we have when we don’t include Cody in every minute of our day. It’s an easy trap to fall into for all parents who love their children regardless of whether they are neurotypical children or children with special needs. But an appropriate time for parents to be alone together without their children should not be looked upon as a selfish desire, it is needed and it will help parents to be better parents.

Alone time does not always require an outside caregiver. A little planning can go a long way. Some of my ideas include planning a night to make a cheese and sausage platter and have a bottle of wine we can share by the fire after Cody goes to bed. I would be happy having a dinner for two by candlelight out on the patio underneath the stars. And on those occasions when Code does go to his grandparents for a weekend, I’ll be happy to pack a picnic lunch and just go sightseeing for a day. Because sometimes parents need a “time-out”!

Since April is Autism Awareness Month, I’ve been asking myself: How can we, as siblings, show support and raise awareness of autism in our communities? And not just in April, but throughout the year? With this in mind, I’ve compiled a few suggestions that can keep siblings active as advocates year-round. Consider it a calendar of sibling support!

January

Attend a statewide budget hearing and speak out for your sibling, and others with special needs. If you can’t attend and speak in person, write a letter to your representative, asking that they vote in favor of measures that provide support and protect equality for individuals on the spectrum. For more on current issues and legislation, visit the Autism Speaks Advocacy page, or the Arc of the United States’ Action Center.

February

Send a Valentine to your sib, telling them what you love best about being their brother or sister. In the process, remember to look for love in the ordinary spaces of your days. You might also read stories from fellow sibs, and see how they’ve found beauty in difficult times.

March

In preparation for tax time, check in with your parents or guardians and ensure that all relevant guardianship, special needs trust, and living will documents are in order. If your parents haven’t yet done so, encourage them to explore public funding sources for your sibling’s care, and thereby ensure that your sib is receiving appropriate benefits. This is a vital—and often-overlooked—aspect of caring for our siblings.

April

Celebrate Autism Awareness Month (and National Siblings Day) by connecting with other sibs. Check out The Sibling Leadership Network to learn more about supporting your sib throughout their life, connect with your state chapter, explore resources, and more.

May

Honor my brother Willie; his birthday is in May! (OK, maybe this isn’t something everyone celebrates … but it is a big deal in our family.) Mark your sibling’s birthday with songs, gifts, and merry-making; let them know how much they mean to you.

June

If possible, plan to attend your siblings’ IEP meeting, in whatever month it takes place. If you’re not geographically proximate, you can still contribute; you could volunteer to assist your sib in a goal. For example, if your sib has a connections goal, you can commit to talking with them on the phone once a week.

July

Consider attending an autism conference to learn and engage with the community. For example, the Autism Society’s 44th Annual Conference will take place in Pittsburgh, PA. If you attend, you’ll have a chance to connect with professionals, researchers, and advocates, as well as several members of the AA16 team. Kerry Magro will be presenting a session entitled, “Defining Autism: From Nonverbal To National Speaker,” and I’ll be presenting, “Challenges and Joys Of Being a Sibling (and How You Can Help).” We’d love to see you there!

August

Use this time to help your sib follow up on health care concerns. Health and wellness is a year-round priority, but if you’re in a caregiving role, make sure that your sib has appropriate insurance, and that doctor’s visits are scheduled as needed. (This is also a good time to review the condition of their medical and adaptive equipment.)

September

September may mean back to school; if so, send a note of encouragement to your sib as they begin another year. You might also investigate postsecondary options for your sib.

October

Halloween is here; it’s time to get goofy! Scan a picture of the two of you when you were young and dressed up as fairy princesses and dragons. Share a laugh together.

November

Give thanks for your sibling, and consider donating to an autism-focused organization. For example, if you’re passionate about employment, make a donation to a non-profit or small business that is committed to creating engaging, community-based workplaces for young adults with autism. For example, this past year I purchased holiday gifts from organizations that employ adults with special needs. Furthermore, I told recipients about the organizations, and why I feel strongly about supporting them.

December

Take a break, rest, and enjoy the holiday season with your sib. Your presence is the greatest gift you can give. 

In my last column, I said I was preparing to give a speech at a meeting of a local special education group about my life with autism in order to advocate for other people with autism and other special needs in my community. I have since begun gathering my thoughts, and I am working toward making the best 20-minute speech that I can. I feel incredibly nervous about this because this is the first time I will be speaking at considerable length about my personal life in front of an audience. For me, this isn’t the same thing as writing about my life for this column or for my blog; what I write here is basically small snapshots of specific parts of my life. I am going to have to address a large portion of my life and experiences in one speech, and while I have a rough outline of how I want to organize the material, doing so is a bit intimidating for me. I read something recently, though, which has caused me to think of this project in a new light. I now think this is a chance for me to learn how to not just advocate for others but to advocate for myself as well, an endeavor which has largely been taken up by my parents my whole life.

I logged on to the Autism After 16 website not too long ago, and I came across a column written by the mother of a child with Asperger’s Syndrome almost a year ago. I found myself focusing intently on the section where she wrote about her son taking on more college classes than he probably should have. She surmised that if he had mentioned his condition to his advisor, he could have arranged for a more accommodating number of classes and would not have become potentially overburdened. She said that her son was afraid of what people would think of him if they knew he had Asperger’s. 

As I read this, I remembered that when I went with my mother to see an advisor about scheduling my upcoming college classes, my mother was the one who mentioned my autism and helped me to figure out what classes might best serve me and my interests. In fact, there have been many instances when my parents have represented me in discussions because my autism would have made doing my own negotiations difficult. With them on my side, my concerns and needs were properly addressed so I could get the opportunities and resources I needed to excel. After reading the article, I now recognize, however, that I will need to represent myself when I “leave the nest” and see to my own affairs more independently. The student in the column I read had not self-advocated on his own behalf which produced less desirable results. I am at a point in my life where I need to learn how to self-advocate for my own benefit, and with my parents’ help, I know I will succeed in finding my own style of personal advocacy. I have learned how to do a lot of things on my own. The content for this column, my blog, and the other material I have written professionally along with the many life skills that I have mastered are proof of that. Although I have learned to do all these things and more, I see now that the speech I will deliver at the special education group meeting will be one of the most important things I will have ever done for myself and others on my own. It will be the culmination of a whole life of others standing up for me. 

Her brother was jealous.

“Do you think you’ll make it home in time for Madison’s birthday party?” I asked.  A college freshman attending school 3000 miles away from home, Madison’s brother is 16 months younger.

Madison was turning 21.

“Hope so, Mom, if all the connections go smoothly,” he said. “So, how exactly are we celebrating?”

“No booze, buddy,” I teased him. “But we will have a red velvet ice cream cake. And of course, Madison’s favorite, pizza. “

I could hear him smile on the phone.

 “Sounds good, Mom. See you soon.”

“Text me when you land.” And he promised he would.

Meanwhile, I set the table and put the “You are Special Today” plate at Madison’s place. I pulled out the “2” and “1” candles, gathered her presents, and figured out how long I needed to thaw the cake before we could cut it.

Madison’s older sister and her husband confirmed their attendance, as did Madison’s youngest brother. Caregivers were in place to pick up Madison from her respite weekend camp and bring her home for the party.

We were ready to make some memories.

Hours later, the siblings arrived on time and helped me finish putting the food out.

“She’s here!” her sister said. “Happy Birthday, Madison!”

We hugged and high-fived and were soon eating pizza.

“Madison,” I said, starting our scripted conversation. “When is your birthday?”

“March 24,” she said in her musical Barney-like voice. The purple dinosaur was never far from her mind, often coloring her responses with his signature melodic but nasal tone.

“That’s right.  Good job, Madison,” I said. “And, how old are you?”

“I’m fine,” she shot back, slurring her words as she scarfed down another bite of pizza.

“No, Madison,” I said, looking down and away from her, remnants of my ABA training kicking in. I moved closer to look in her eyes, and repeated, “How OLD are you?”

“Nineteen,” she said softly, grabbing another pizza bite.

“No,” I said. “Try better.”

I touched her hand to get her attention.

“How OLD are you?” I said again and then prompted. “Twenty—”

“Twenty-one!” she spouted out, and then flashed a smile as if she’d hit her own jackpot.

“Yay Madison! Time for cake!” I praised her.

We lit the candles, sang “Happy Birthday,” and then moved the cake to the dinner table. But before I could cut it, Madison grabbed a fork and aimed for the side of the cake.

“Madison, wait,” I said, stopping her stab mid-air.

“But, Mom,” one sibling said. “Why not let her? It’s her birthday.”

“She’s 21,” the jealous one added.

Madison looked at me, her fork still suspended.

“Okay, Madison. Eat your cake.”

And she did.

First the icing. Then the cake. Then the chocolate-chip caramel-laced ice cream. And finally, she tried the surprise garnish, a chocolate-dipped peanut butter cup, a new never-before-tried treat.

We waited as she bit into the nugget, knowing it was just as likely for her to spit it out as it was for her to swallow and like it.

She chomped down, paused, and smiled.

“She likes it!” All the siblings cheered.

And we laughed with her and for her as we helped her celebrate in her own special way. She’s 21 and “trying better,” on the cusp of so many discoveries.

And so are we.

Okay, I’ll admit it. I sometimes have a tendency to forget that “disability” and “autism” are not synonymous. I especially need to remind myself of that fact when it comes to sniffing out postsecondary options for Cameron. I recently attended yet another information session on yet another program for students with disabilities. This particular program was a four-week summer session designed to prepare students with disabilities for college. See? There’s another word with a meaning I have a tendency to forget: “college” and “postsecondary education” are not the same. When I signed up to attend a session on a program on "College Preparation for Students With Disabilities,” a specific type of "student" and a certain type of "college" came to mind. But as I sat in this session, the definitions of "disability" and "college" started coming back to me.

As usual, the information imparted at this session stirred my soul. I suppose when you have no idea what the future holds, everything sounds like a good idea. But teaching prospective college students study skills, using a drama course to teach self-advocacy, and practicing reading college-level texts for comprehension seem like great things for a student with disabilities to learn. At least some students with some disabilities … Sitting in the familiar setting of my son's school, among parents I know and among students whose learning profiles are familiar to me, the vastness of the term "disability" became apparent. When a fellow parent asked the question that was on my mind: "What if a student has no hopes of being able to comprehend college-level text?" and the facilitator responded, "Well, she'll have to read college level text in college!" I began to realize the presenter didn't know her audience. We were a group very familiar with language-based learning disabilities and high-functioning autism. When we hear "disability" that's what we think. There was a bit of a mismatch of definition in the room. Most of us in the audience didn't aspire for our students to take credit courses in college. We were looking for continuing educational opportunities beyond high school. And preparation for what lies ahead sounds like a good way to spend the summer. Little did we know that this program was aimed at preparing them for something that was likely out of reach for most of us.

Cameron seemingly not having the appropriate disability for this program wasn't the only thing that bothered me. There was discussion about the need for participants to stay for the entire session each day due to the disruption caused when students leave early. A student who leaves early apparently requires a staff member escort to the pick-up zone, and is very disruptive indeed. Excuse me? Students aged 16 to 21 that are being prepared for "college" cannot walk out of a building unescorted? This struck me as a little counterintuitive. I'm not aware of any college's Department of Disability Services offering "adult supervision to and from the carpool line" as a reasonable accommodation.

So this wouldn't be a program suitable for Cameron. But I wouldn't consider the evening spent learning about an unsuitable program a total loss. I have now had a reminder of the fact that disability doesn't just mean autism. And not all college programs for students with disabilities are suitable for students with autism. Just as not all college programs for students with autism will be suitable for Cameron. I'll keep looking. I've got about 18 months to find something. It may well take that long to find a keeper. 

It was about a week into my job at Autism Speaks when I realized how much you have to enjoy your work to do a full-time job. I am one of the lucky ones. To find an organization I love in a field that helps maximize my interests is something I’m extremely grateful for. This has made the days seem to fly by. While getting work done I usually have the biggest smile on my face.

This made me ask myself a question though on what others on the spectrum believe about full-time jobs. Three major challenges for me as regards a full-time job are related to interests, communication and burnout. I wanted to discuss what these three challenges mean in more depth from my experiences.

Interests

Forty-plus hours a week at a job is a huge chunk of many people’s lives, so being happy—or at least content—with doing what you are doing seems to be really crucial. For an individual on the spectrum who has key interests in only a few areas, it makes finding your specific job especially important. In addition, making compromises can be difficult for someone with ASD. Even if you are at the right job for you, if it isn’t exactly what you want you might turn yourself off from the job altogether. The “connect” has to be there.

Communication

Another challenge with most full-time jobs is collaboration. Even in many positions where you are working on more individual projects, you still have a supervisor who you have to report to. If you have several of these projects and there isn’t an inherent time-line for getting them done, a person with ASD may have issues as sorting through and sequencing which should be done first. In addition, making necessary transitions between tasks and projects can be tough. If you are working in a team environment you might need to compromise which often takes understanding from other team members and from you. This is hard at times because some individuals on the spectrum have “tunnel vision” or the inability to put themselves in the shoes of someone other than themselves.

Burnout

Finally, another challenge can be burnout. For me, I had to do a lot of work as a kid when it came to therapy to get to where I am today. This has made me feel like I have a few more miles on me even though I’m a rather young adult. Because of the work I did as a kid, it has made it an easier transition to the job world because I’m more aware of how to take on commitments. I always had a schedule, another therapy session appointment to make, another task or goal to achieve. Committing to activities when you are younger I think is a necessity today for kids to develop.

Preparing for the Future

I think these challenges need to be considered for adults on the spectrum and we need to start focusing on addressing these in early childhood. Teaching and learning job readiness skills is essential if there is to be a job for those of us on the spectrum. While I am focused on employment in the traditional workplace, I’m thankful on the other hand there are self-advocates out there who are not doing the full-time job route. Some of these individuals have decided to create their own businesses, do consulting, speaking, tutoring, etc. They have found jobs where they have a certain amount of flexibility to what they are doing. It’s important to consider what type of employment model fits you best. And, the more trial and error you do the better off you’ll be. This has always been my mantra and I’d absolutely encourage you to make it yours as well.

My parents and brother are coming to visit me and my husband here in Alabama next week, and we can’t wait to welcome them. I’ve been counting down the days on my calendar, and I know that Willie has been, too. (In fact, whenever I look at my calendar, I can practically hear him saying, “In one more week, we go to visit Caroline and Jonathan in Alabama!”) Ostensibly, they’re coming to celebrate my mother’s birthday and visit our new home for the first time. However, they are also arriving at the start of Autism Awareness Month. And the fact that their visit falls right between World Autism Awareness Day (April 2) and National Siblings Day (April 10) … well, the timing is ideal, if you ask me. It’s been too long since we’ve seen one another, and I’ve felt the separation more acutely since I began serving as a volunteer member of the Sibling Leadership Network’s communications committee. The writing and preparation I’ve done for them has me missing my brother, and I can’t wait to spend time with him.  

Of course, the usual questions run through my thoughts: Will Willie be able to adapt to the travel, the change in routine? Will he have another meltdown on the flight? Will he struggle with being in a new place, or will he be able to enjoy it? But what I’ve learned in being Willie’s sister and in serving as a caregiver for adults with intellectual and developmental disabilities is this: One of the best gifts I can give another person is a firm faith in their capabilities. It is all too easy for caregivers and family members to get stuck in a mindset that says, “We can’t do that outing/trip/celebration. He/she will never be able to handle it.” On some days, that may well be true, but if we are to support and equip our loved ones on the spectrum, we need to constantly check in and reassess such statements. What was the case yesterday may not be the case today. 

As an older sister, I do feel protective of Willie, but I can’t let that get in the way of him having the dignity of risk. And even as I acknowledge the areas where he needs support now, I’m determined not to set limits on what he is able to do for himself. After all, if he’s never put in a position that challenges him, how will he learn and grow? Self-control is a muscle he’s building; he still has difficulty managing his behavior at times, but he is learning. 

And as the visit approaches, it helps to know that Willie has participated in planning the itinerary. Our parents asked him about his travel preferences, saying, “Do you want to have a shorter flight and a longer drive, or a longer flight and a shorter drive?” He apparently responded right away, with a decisive tone with “A shorter flight!” So that’s the plan. In turn, I’ve been doing some preparation of my own, mainly in the form of letting go of expectations. I remind myself that the visit doesn’t have to go “perfectly,” that Willie’s behavior will probably get difficult at least once, and that it will be all right even so. 

It’s wonderful to feel the anticipation, to know that I’m looking forward to seeing my brother. This may sound simplistic, but it’s a hard-won truth. There was a time when I looked at Willie and felt only fear. There was a time when I felt that I had to get away from him, from the havoc wrought by his aggressive and self-injurious behavior. But now, all I want is to welcome him here, to the old house that is our new home. And I think that’s the reason why I’ve had these particular song lyrics (from Phillip Phillips’ song, “Home”) running through my mind this week: 

Settle down, it'll all be clear/ Don't pay no mind to the demons/ They fill you with fear

The trouble it might drag you down/ If you get lost, you can always be found

Just know you're not alone/ Cause I'm gonna make this place your home.

First published August 14, 2012.

As I mentioned in a previous column, my son is headed off to college this fall. “This fall” is now imminent; we can count down by days rather than months the time left before he is off on this next phase of his development. At the same time, I am faced with a new class of senior students, for whom the upcoming school year will be our “last chance” to impart upon them the knowledge and skills regarding what it will take to have the best chance of success in the adult world.

In looking at what last-minute words of parental wisdom I want to convey to my son, I am coming across some overlaps between these words and the words of educator wisdom I want to convey to my students this year. It’s like one big Venn diagram in my head, so to speak. For example, the first, biggest, and most obvious—yet at times most easily overlooked—issue is self-advocacy. This is a coin with two sides and all sorts of nooks and crannies in between. On the one side of the coin we have the issue of standing up for oneself and knowing when and how to effectively self-advocate.

When my son was registering for his first semester classes, he came home with a schedule that appears more than a bit on the intense side, especially when one takes into account the fact that he plans to audition for his college’s marching band. His intention had been to take four classes his first semester, which seemed reasonable given the plans he has for extracurricular activities and factoring in a semester’s worth of Advanced Placement credits in his favor. So after meeting with an advisor, he is scheduled for more credits than I took in any one semester in college. And that doesn't even include the potential for marching band time constraints. When I asked him about this, he explained that he felt as though the advisor was “forcing” him into taking a certain number of classes. So I had to ask: Did you disclose your developmental history, son? In other words, did you tell him about your Asperger’s? Did you tell him that you had a plan in place that would allow you a little bit of breathing room as you make the adjustment to living in a dorm hundreds of miles from home and taking college-level classes and meeting all new people and possibly participating in a top-notch band and so on and so forth. No, he did not disclose his disability, nor has he even been willing to entertain the notion of registering with the school’s disability services office. He will sink or swim on his own merits as far as he is concerned. Not to be a “smother mother,” but I feel this is a mistake on any number of levels and one which I am powerless to control. I cannot make him self-advocate. The stigma is still out there, after all, as much as we would like to believe it is diminishing. My son is an incredibly brave, intelligent young man and he is scared to death of what people who are just meeting him will think of him if they know that part of what makes him brave and intelligent falls under the spectrum of autism.

The mirror image of this conundrum can be found in one of my senior students, whose reluctance to acknowledge his disability and its practical implications is calling into question his ability to succeed in the adult world in less than a year. In his quest to appear “normal” he has placed certain restrictions on what he will and will not do in his transition preparations, and the parameters he has set forth  are doing little more than hindering his chances to make that transition a smooth one. Like my son, he is incredibly self-conscious that others will judge him based on that word, Autism, and all the prejudices that come with it. So once again I am powerless, which for a closet control-freak like me is a terribly stressful place to be!

So can any words of wisdom come from this? What do I tell these young men, and the others like them, other than what it took me over 40 years to learn for myself and hope they will not be content to wait that long for the message to sink in? I will tell them this: The best strengths you will find within may very well come from “the A-word” and you’ll never know for sure unless you embrace that which goes to the heart of who you are. Good luck, gentleman—I am pulling for you!

We're winding down Reilly's spring break as I write. It's been a good week. I haven't accomplished much except to attend to his social and laundry needs. But this week, and recent events, have given me reason to hope for the future. 

I picked Reilly up at the airport on Friday afternoon, and he was bubbling over with plans for the week. Several of his high school friends were also on break from programs similar to Reilly's, and he was anxious to see them. The moms were anxious to catch up, as well. We wanted to compare notes: How is Matthew doing at Riverview? How is Alex doing at the College Internship Program? How is Reilly doing at NYIT? And how is Demba doing at the community college? 

Immediately, there were plans to go to the movies, and have sleepovers, and visit their high school to see favorite teachers and friends still there. Arghhh. Lots of driving, I thought to myself. But, it's only a week, I reasoned with myself. And, luckily, Matthew's wonderful step-father volunteered to do much of the chauffering. 

As it turned out, Reilly could have used a social secretary, as he double-booked himself more than once. Of course, if he had included me in the planning a bit more, I might have headed off some of the scheduling problems. But, in the end, it all worked out. He accomplished everything on his agenda, even hosting a friend from NYIT for a couple of days. 

My chats with Reilly, his friends and their mothers are helping me see growth and hopeful glimmers of future. All the boys are making progress, though certainly challenges remain. They are enjoying classes that are, for the most part, useful. They're learning, albeit slowly, to be independent. They're getting some job skills. Alex is learning to cook. Demba is learning public transportation. Matthew was finally able to move into the dorm. Reilly got himself a summer job! He set his sights on a front desk position at our community pool, downloaded the application, filled it out and emailed it to the manager, following up to make sure it was received. He came home for break with the news that he got the job. Shortly before spring break, I got an email from school saying a new independent living counselor had been hired and he's working with Reilly on grooming issues (yaaaaay!). 

A new, or budding, confidence is visible in each of the boys. At dinner last night, Reilly told us he's proud of himself for being able to do “college.” The moms and I agree; we feel lucky to have the means to send our boys to these programs. But what of others less fortunate? And will the programs lead to useful jobs and lives of purpose for our sons? We don't know yet, but for now, it's OK. A couple of years ago, we couldn't have pictured our boys where they are now. 

This is what hope looks like.

I am now officially the parent of an adult child. Cameron has reached the age of majority. And how are we celebrating? Like any star athlete would after winning the championship: We're going to Disney World. (The lack of exclamation mark was not an editorial mistake.)  As a matter of fact, as you're reading this, there's a very good chance that Cameron and I are standing in line. And when you finish reading this, we'll be standing in line. And when you come back in a few hours to read this compelling column aloud over the phone to your BFF, we'll be standing in line. 

Last week I had lunch with a group of moms from Cameron's school. We were all discussing our Spring Break plans. When my Disney trip came up I received some interesting advice. It wasn't about where to stay or what attractions to hit before the crowds get too bad. The advice was to get a letter from Cameron's doctor stating that he has autism and could not tolerate standing in line, and then take the letter to guest services at Disney. We would be issued a pass to go to the head of all the lines without question. Hmmm ... 

I went home and did some online research to find out exactly what documentation I needed in order to be granted this magic pass to the Magic Kingdom. As I was reading firsthand accounts of the accommodations that theme parks offer guests with disabilities, that sound of the needle being ripped from the record went off in my head. Wait a minute! Who has the frustration tolerance issue with waiting in lines? Is it Cameron ... or is it me? Cameron has been to Disney World before and he managed just fine waiting in line with the rest of the guests, thank you very much. Why would I want to take advantage of a company's good will towards guests with disabilities by fudging on what Cameron needs? I know there are plenty of guests that truly need the accommodations offered, but Cameron isn't one of them. I'll stand in the humid, sticky Florida sun with the masses of humanity and see which gets more attention: the growing mound of frizzy hair on my head or the chirping noises and flapping from Cameron.

So, thank you to Disney and other companies that make these accommodations for guests who need them. Policies like this enable families to have dream vacations that would otherwise be a nightmare. I am happy that my family does not need your gracious accommodations. And I promise I will never, ever roll my eyes when someone is escorted to the front of the line. Now, my eyes might roll a smidge if someone in that guest's party is sporting an inappropriate garment, carefully selected to display an inappropriate tattoo. We all have our frustration tolerance issues we need to work on. Luckily Cameron does not need special accommodation to deal with his. As far as my own go, I will work on turning the eye roll into a discreet attempt to avert my eyes.

It is frustrating to me that even though Cody has Medicaid and private insurance, his needs are still not being met.

It is beyond me as to why the state refuses to pay for speech services for anyone over 21 years of age. They also will not pay for occupational therapy for anyone over that age. While Cody’s private insurance will pay some, we still cannot afford the out-of-pocket expense.

A state regional services representative has visited with us. He provided us with picture cards of feelings, wants, needs and emotions. But Cody is verbal enough that this isn’t going to meet his real needs either.

Much of Cody’s speech is echolalia—meaning he repeats what he hears. But he has demonstrated appropriate communication at times.

At the dinner table for instance, if he is full he will say he is done. When asked if he wants something else he will say “Yes” or “NOT!” We are working with him to say “No, thank you.”

When he bumps into someone while passing in the hallway, Cody has recently started saying “Excuse me” on his own. His prayers at the dinner table and at bedtime he has said perfectly for years.

In addition to echolalia, Cody’s has trouble understanding how some words are used. In his mind if there are “crawdads” there should be “crawmothers” and “crawaunts” and “crawuncles.” If something can be “mandatory” there should be “womandatory,” and “girldatory” as well. Boydatory hasn’t come into conversation for whatever reason.

Cody still needs many prompts to complete tasks and the learning of life skills is a slow process. Bill and I can find it challenging at times to fit teaching life skills in with the rest of our work and family responsibilities. But we are gaining some ground in that area.

Getting control of Cody’s anxious need to pace the floor is another issue that is not being met. This is why a "sensory diet" was recommended to us at the last meeting with Cody’s service coordinator and the director of the new program we are trying to get him into. But for that to happen it would require that Cody have occupational therapy. Here again is an expense not covered that Bill and I cannot afford to pay out of pocket.

I have been struggling to find appropriate online programs that I think would help him to put speech together. As of yet, I really haven’t come up with any that seem to fit his needs.

Why is it that the federal government looks at Cody as an independent adult in the sense that they now will pay SSI in spite of our household income, but the state looks at him as our dependent? I don’t deny that he is and always will be under our financial and family support in every way. Why is it that child support is no longer deemed necessary for someone with a cognitive disability who, although an adult, still requires the care of their family?  I find it impossible to understand the state’s reasoning.

Cody’s service coordinator called me last week to say that getting Cody enrolled in the new day program is still in process. She also said that she is working with the agency’s board of directors to pay for a speech evaluation and up to six therapy sessions, but that was probably the maximum amount they would pay for at this time. I had to send her the doctor’s order we obtained when she initially told us she thought speech therapy would help Cody, because in her words, “Everything needs a doctor’s order.” I faxed that to her the next day but have yet to hear any word as to whether the board has approved or denied the request.

In the meantime Bill and I are going through a trial-and-error process to help Cody communicate appropriately, to help him improve his focus and complete steps to different tasks, and to help him manage his anxiety so that the constant pacing and stimming will stop. Wish us luck!

It sounds strange to say that the most important lesson I learned at the disability and inclusion conference I attended this past weekend in Norfolk, Virginia had nothing to do with the program itself. But nevertheless, it’s true. 

It was 1:00 a.m. last Friday, and I was trying to sleep. Several factors conspired to keep me awake: I was in an unfamiliar place, in a different time zone. I was keyed up from speaking at the conference’s opening banquet; I’d shared stories about my brother Willie, and they’d been well received. And I’d eaten a small dessert, so I had sugar and adrenaline coursing through my veins. Furthermore, I knew that I needed to lead a workshop the next day, so I kept thinking, “I only have so many hours of sleep before my alarm goes off.” But the main reason sleep eluded me was that the people next door had their TV on at top volume. And after I’d done relaxation exercises, put pillows over my head, and fashioned “earplugs” out of Kleenex, it started getting to me. 

Who were these people to be so inconsiderate? I thought. (I’m the kind of person who will use just one wastebasket in my hotel room, so that the cleaning crew won’t need to do extra work.) With every such thought, my anger grew. In fact, it mounted until I felt I might scream or cry. A sense of deja-vu struck me as I lay fuming. Why does this feel so familiar? I wondered. Why do I feel so powerless? Why can’t I call the front desk like a normal person? (Why didn’t I call hours ago?) 

Suddenly, I had it: this reminded me of home. Or at least, home as it was when I was in high school, when Willie started having meltdowns and waking up in the middle of the night screaming and smashing things in his room … the room next door to mine. I used to lie in bed at night and think: How can he do this? Why can’t he get control? Doesn’t he realize how his behavior is hurting everyone? Why can’t we stop this? 

Since I was tired, some deep-down, buried part of my brain took over that night in the hotel. Unconsciously, I’d decided that the best thing to do was what I used to do when Willie would wake up and start yelling in the middle of the night: wait it out. Try not to hear what you hear. Wait for Mom and Dad to come, wait for the struggle to cease. Only get up if it sounds like they need your help. Otherwise, put your pillow over your head, with the knowledge that you can’t change what’s happening. 

The anger I was feeling was old anger. As I lay in the hotel bed, I felt how I used to feel—upset that my sleep and peace were gone, and that there was nothing I could do about it.  

In the midst of this, however, some radical thoughts flitted across my mind. What was true before isn’t true now. What if you had permission to take care of yourself tonight? And what if you could trust that, no matter what, you will get enough sleep? 

But how can five hours be enough?! I thought. 

For tonight, it will suffice. Maybe what’s really keeping you awake is this anger, this learned helplessness. This insomnia is actually an opportunity in disguise; you won’t be able to sleep until you make the choice to let these old “coping mechanisms” go. After all, they’re certainly not serving you now.  

Once I realized this, I was able to act. I stepped out and knocked on my neighbor’s door, asking that they turn the volume down. When minutes passed with no response, I surmised that the inhabitants must be asleep (!). I called the front desk. At last, the volume lowered, and I drifted to sleep. 

When I awoke the next morning, I was tired, but OK. I led the workshop, and it went well. And that afternoon, I went back to my room, put my head down, and went out like a light.

A few months ago, I wrote about the Special Education Parent Teacher Student Association (SEPTSA) that started in my school district. The first meetings that I attended went very well, and I learned a lot of useful information. Now, I have been given a chance to speak at the next meeting in April (Autism Awareness Month) regarding how my autism has shaped my life. I was honored to be asked to speak and am happy to have the opportunity to do so. This is also a big responsibility, and I want to make sure I am fully prepared so that I can advocate well for others with autism. I have been asked to address the challenges I have had to face because of my autism and speak about my successes as well. I will cover who and what helped me to cope with and, in some cases, overcome the limitations imposed on me by my autism. There are many aspects of my life which fall into each of these categories, but I am going to focus on what I feel are the most important to me. 

One of the biggest areas I want to touch on is how I had to get beyond thinking only of myself, my own thoughts, feelings, and needs and start considering the feelings, needs, and ideas of others. As a young boy, it took time for me to take in and understand that there were others in my environment that warranted consideration. I was not the center of the universe. My parents, extended family, friends, teachers, and therapists all helped me to grasp this concept. Understanding this has helped me to reach out to others and has been a big theme in many of the things I have done including volunteering in a special needs preschool classroom, helping at a Special Olympics fundraiser, and just getting along and holding conversations with other people in general. I also think that as I opened up to others, I gained the ability to better express my thoughts through my improved speaking and writing skills.

Another big theme that I want to include during my presentation is how even though my autism has created some limitations, I have been able to compensate for and rise above many challenges with help from certain people and therapies. My immediate and extended family love me very much and have helped me to understand many things about the world, my condition, and how to excel both with and despite these elements. This is an ongoing process, but one that has helped me in many ways. 

When I was younger, my speech teachers played a huge part in helping me to learn how to express myself and reach out to others in appropriate ways. My special education and regular teachers worked with my parents to come up with the best plan of action for my education, behaviors, and social issues. My one-on-one teaching assistant helped me with all these issues as well and more. A listening program set up by my occupational therapist helped diminish loud noises and calmed me. Piano lessons taught me the value of patience and taking my time to complete a task instead of rushing through it and getting poor results. Many of these people became family friends and helped me out in numerous other areas of my life as I grew older, and I still see many of them to this day. My participation in several special needs sports programs has allowed me to meet many different people, and it has also given me an opportunity to play sports. Earning my GED and a college degree were big academic successes for me which I am personally very proud to have accomplished. Writing this column and my own blog along with starting a children’s book series are also accomplishments I will discuss with the group.  

I had many hurdles to get over as a boy and still have much to learn. I still have fine motor issues that make it difficult for me to do everyday tasks such as tying my own shoes, making my bed, and opening certain packages. I also need to work on my cooking skills. I have, though, learned to do many household chores such as laundry and doing the dishes. Over the years, I know my parents worked very hard to get the proper programming for me in school and they worked with state agencies to get the best benefits for me. I also know there is a stigma about autistic people which often colored many of the struggles that my family and I have faced and still face. Even though I feel some people had certain negative assumptions about me and my abilities, I never gave up. Neither did my parents. I worked hard at everything I did and exceeded many people’s expectations. I personally believe there is nothing that I cannot do if I apply myself.

I have a feeling that this speech will be a small summary of my life with autism up to this point in time. I hope I can do it proper justice and adequately answer any questions the members of the group ask me. Groups like SEPTSA serve as an important platform for discussing the problems inherent in serving people with conditions like autism and finding solutions which can work to everyone’s benefit. I am very happy to be able to contribute to such a group.  

“I don’t want to take a plane to college,” our 20-year-old son Mickey tells us.

“You won’t,” my husband Marc and I reassure him. “You can go to college and still live here at home.”

Mickey understands that college is the step that comes after high school, so “college” is the word we are all using for wherever he goes next. While many of our friends and their children are visiting campuses this spring, Marc and I are doing our own version of the college tour. We are visiting day habilitation programs for next year.

 “There’s a Harvard for Mickey,” my neighbor Amy insists. She’s been saying this to me for years. “There’s a great program out there. You’ll find it.”

I’m not so sure.

Mickey isn’t ready yet for a more permanent, residential program. We’ve seen a “Harvard”; another neighbor’s daughter has been there the past 10 years. It’s a vibrant, integrated community two hours away in Connecticut that offers employment, recreation, and supervised living—a full life. That kind of program is our lodestar. Our hope.

But not yet. Right now Mickey isn’t even ready for a day program “without walls.” Programs without walls have no central location. They offer a daily roster of different activities, all out in the community. Mickey still needs a home base. What if he has a seizure, and needs to sleep it off?  You can’t do that when home base is hanging out in the local library or mall.

I obtain a directory of day hab programs from the County Department of Community Mental Health and start calling. I want to screen them before we bring Mickey. “What do you want for your son?” one social worker asks. I am taken aback; isn’t it apparent why I am calling? I tell him about my son’s medical needs; his anxiety; his quirky sense of humor. I rattle off the obvious: community integration, vocational skill building, volunteer work, social opportunities with his peers. Then unexpectedly my eyes well up.

“I want him to be happy.”

Just as high school seniors know immediately—through some alchemy invisible to their parents—whether the school they’re visiting is a good fit or not, Marc and I find we have immediate, visceral responses too. At the first day hab program we walk into, no one asks us anything about our son. We are assaulted by noise. Older adults in wheelchairs are crammed around tables; one woman reads aloud from a newspaper though no one is listening. The administrator refers to people in the room as “consumers.” I don’t like that word. It’s antiseptic. Dehumanizing. I don’t like this place. I’m ready to bolt.

Instead, Marc and I walk politely through the facility and ask questions.

“What does a typical day look like here? What kind of training does your staff have?”

The response stops me cold: “They all have high school diplomas, or high school equivalency.”

Welcome to the world of adult services.

The second site we visit that afternoon is welcoming. Three administrators sit down with us in a conference room and invite us to tell them about our son. They take notes. They listen attentively, and ask good questions—what makes Mickey happy? What are the signs he’s about to have a meltdown? They describe their program. We talk at least half an hour. We’re impressed; I am feeling hopeful. Then they take us to tour the facility. We visit the “sensory enrichment room.” Most of the people look profoundly physically and developmentally disabled. We visit other rooms; again, I am struck by how much adaptive equipment I see. I have a hard time picturing Mickey in this environment; I see no one his age, so I ask.

“Our participants range from their 30s to 60s.”

Mickey is used to being with students his own age. How can it be appropriate for a 20-year-old to spend every day with people who are so much older?

That’s when it sinks in: School is truly over. “Adult services” aren’t only for young adults like Mickey. “Adult” means the entire lifespan.

We cross that program off the list.

“But we’re getting closer,” Marc says reassuringly. “At least we liked the staff.”

Two days later we visit another program. The director tells us that they have four or five “consumers” who start their morning in the building, then go into the community. They spend afternoons hanging out at Dunkin’ Donuts, or in the mall. I picture Mickey wandering aimlessly through endless food courts. Overwhelmed. Purposeless.

“But what about the other ones who aren’t out all day? Do they work on life skills?” Marc asks.

“We can’t do that here,” she tells us. “Much of our population is medically fragile. We’re just trying to keep them safe.” It sounds like babysitting.

Still, we take the tour. The facility consists of an open space as vast as a gymnasium. It contains bare tables, a couple of couches, and many idle “consumers.” One woman stares at the ceiling, then stares down at her lap. Ceiling. Lap. Ceiling. Lap. Ceiling. Lap. The room has the hopeless feel of a nursing home. Averting my gaze, I ask the administrator about the ages of the people we’re seeing.

“Twenties to 50s,” she tells us. But I see a white-haired woman who looks well into her 70s, and a wizened old man who grins at me. He has no teeth. I smile and nod back.

We peer into an alcove, and see a sink and microwave. I think how much Mickey likes to bake. “Do you do any cooking with your “consumers?’”

“We can’t,” she says. “Too many legal liabilities.”

Marc and I can’t find the exit fast enough.

“I’d sooner keep him home,” I say fiercely.

“We will figure this out,” Marc says. Trying to convince us both.

“It’s grim out there,” I tell my neighbor Amy. I know there’s not going to be a “perfect” program, just as there is no perfect college, no perfect job, no perfect anything. But what about acceptable?

We visit more places. Finally, we walk into a program and see several young men and women Mickey’s age. They look energetic. Engaged. The facility isn’t beautiful, but it is bright and cheerful.

“What’s a typical day here?” Marc asks.

We hear the right words: functional academics, community integration, supported employment. They partner with a program that offers life skill classes at local colleges for adults with developmental disabilities. Most of the people in the program are in their 20s. When we tour the building, we’re pleased to see a computer lab, a fitness room, and a fully equipped kitchen for program participants to practice cooking skills. “We’d be happy to have him come spend a day and try us out,” the coordinator suggests.

“What do you think?” I ask Marc when we are back in the car. But I already know. “I can picture him here.”

The following week we visit one more day hab. The young adults there look comfortable. Engaged with each other. The staff seems warm and caring. We talk with them for more than an hour. “We’d love to meet Mickey,” the coordinator offers.

“I can picture him here too,” Marc says.

Relief. We’ve located two acceptable programs. If both programs don’t lose their funding, and if they have openings in the fall … we actually have a choice. No. Mickey has a choice. Because when all is said and done, this isn’t about us.

“Is it ‘Harvard?’”Amy asks.

I think wistfully of that residential program in Connecticut we like so much.

“No,” I say. “More like junior college.”

But maybe—just maybe—it will be the best step toward developing the skills and social maturity Mickey will need to thrive someday at that college in Connecticut.

Cameron had a surprise at school on Friday. He was presented with an award for completing 180 days of paid employment. His employment support specialist from the adult service provider he’s enrolled with came to school and presented Cameron with a certificate and an iTunes gift card—which is Cameron’s second favorite form of currency. I must admit, when the agency representative contacted me about this milestone, my first reaction was, “Yeah … so?” I mean, Cameron is such a creature of habit, and loves his job so much, the idea that keeping that job for 180 days would be a remarkable milestone never occurred to me. But the agency representative confided that very few of their employees reach the 180-day mark.

Cameron was presented with his award during a classroom session of his internship class. (The class is structured such that each week, Tuesday through Thursday are on the job and Monday and Friday are in the classroom learning skills such as resume writing and interviewing.) The school’s Transition Specialist sent an email to administrators about Cameron’s achievement, which she forwarded to me. In her email, she said, “This is a nice example of our partnership with family and community resources.” It took me reading that sentence to truly appreciate the collaboration it took to get Cameron to the 180 days of paid employment milestone.

Here’s how this “It Takes a Village” collaboration plays out: My neighbor introduced me to a restaurant owner, who offered Cameron an internship upon learning that Cameron’s dream in life is to own his own pizzeria one day. Cameron’s school (and his Transition teacher) supported this opportunity by allowing him to travel outside the normal internship radius, providing travel training, and accommodating his schedule so that he could miss the end of day at school and return home from his internship. The adult service provider came on the scene, and championed the transition from internship to paid employment and from paid employment to additional hours and new skill development. I’ve stayed in the wings, gently nudging where I think nudging is needed. (I nudged for additional hours and training of new skills.) Luckily for me, all parties have been supportive of my involvement, and dare I say, appreciative? There is no doubt that I am appreciative of all parties’ involved.

I am very proud of Cameron, and don’t want my “Yeah… so?” attitude towards his adult service provider’s milestone to paint me as a cynic. But … rewarding Cameron for 180 days of employment is a little misleading to me. Cameron has not gone to work for 180 days. He was hired 180 days ago. And he works eight hours per week. Don’t get me wrong. Cameron’s schedule is great for Cameron, and is just what he needs in terms of hours and workload. In terms of outcomes for this adult service provider however, does someone being employed for eight hours a week for four months really warrant a celebration? Again, I’m very proud of Cameron, and have great gratitude for those that support him in his endeavors. But for the greater population of disabled employees, we really need to scrutinize outcomes and determine if success is really in the eye of the beholder, or if success is something we can all celebrate.

I had two big “firsts” this week. Monday morning was my first day at my first full time job at Autism Speaks. About three weeks ago I received a call offering me a full-time position starting in the middle of March as a Social Marketing Coordinator. 

The other first was that I announced the date of my first book called “Defining Autism from the Heart,” a self-published volume which should be released on April 15th. This is a project I’ve been working on for a long time, which I was so grateful to finally have finished. The fact that the release date is set for the middle of April—which is Autism Awareness Month—made it even that more significant. 

It has been an incredible week I’d have to say. Both events were great, which also reminded me of a bunch of other firsts in my life. 

My first kiss. 

My first “A” on a report card. 

My first diploma. 

My first car. 

My first college acceptance letter. 

The list of firsts seems to go on and on. 

Through all of this, I thought about the firsts that many adults with autism aren’t getting in terms of employment. One of my parents’ favorite movies when I was growing up was a movie called “Dave,” in which a look-alike takes over for the president after a health condition leaves the current president disabled. In the movie, the look-alike discusses his plan to make sure everyone in the United States has a job. And of course in the movie, those dreams are realized. The type of dreams that I have. 

This is something I wish we could do for the autism community. Research indicates that adults with autism continue to experience high levels of unemployment. I find this unacceptable. These individuals need the chance to have a trial run; to have their first paid job in an area where they can benefit a company. 

Just from my first day of work I realize how amazing it is to work for something and this should be available for many more adults today. 

This leads me to the last “first” I hope will happen soon for me. I plan to be the first president of a nonprofit organization called KFM Making a Difference. I am the founder of KFM. Although we are still waiting for the IRS to give us our nonprofit status, I hope to soon help adults with autism get their first jobs. I wanted to start this organization in part to help advocate for adults with autism in businesses and to help them get a foot into the door. 

This first for me, I hope in the future, will be a huge first for someone out there who needs it. In the meantime I continue to look towards the future and remind myself to be grateful for everything that has happened so far.