Commentary

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.

"Oh my goodness...!" I saw the email’s subject line and felt a grin on my face. I'd been accepted as a workshop leader in the Autism Society of America's 44th Annual Conference. My proposal for a session on sibling support had been accepted as a part of the program. I'd be traveling to Pittsburgh, Pennsylvania in July to present. This was really happening! 

“I’ve been accepted!” I kept saying. My husband reached over to hug me; I could barely keep still long enough to receive it. The fact that I’d been invited to speak about sibling support meant so much to me. It showed me that my family’s experience, and my perspective as a sibling, is of value to others in the community. Speaking at the conference would allow me to transmute difficulties into sustenance for others, and I was thrilled. 

I felt the same way when I was asked recently to serve as a volunteer member of the Sibling Leadership Network’s Communications Committee: that this was work I was meant to do. The sun was shining bright … but then I felt sudden fears pelting down on me like an unexpected shower. I’m so nervous! What if I don’t do a good job? I have to do a good job, and connect with the audience. I really want to give a talk that’s helpful and supportive for families, to show them that they're not alone! But what if I fail? I can’t fail them ... 

And right at that second, I heard how I sounded, and started laughing. I couldn’t even give myself thirty seconds of undiluted excitement about this opportunity; no, I was already pursuing perfection. Realizing this, it was as though I was looking at myself from a kind stranger’s perspective. From that vantage point, I thought, Honey, you don’t have to deal with all that pressure. You just have to come prepared—which you’ll do anyway—and show up with love. 

My perfectionistic reaction is so much a part of who I am as a person, and as a sibling. I will probably always feel that flutter of fear, that pressure to perform. The question is, what will I do with it? The anxiety isn’t something to bury; it’s something to embrace. I’ll make it a part of the presentation itself, sharing my struggles in hopes that it will help other sibs who experience the same anxieties. 

Autism researchers actually have a term for sibs who strive in this way: Supersibling. A 2007 New York Times article defined “supersiblings” as “children who are especially sensitive and responsible as a result of growing up with someone with a disability.” Children who feel pain and joy acutely; children who have so much invested in caring for others that they can’t always see what it means to care for themselves. 

I first heard the term from fellow sibling Maureen Chesus, and I gasped with recognition when I read what she wrote: “[The] feeling that everything was always my fault carried into my young adulthood. When I moved away to college, my new friends always joked about how I was constantly apologizing for everything … ” 

I wouldn’t trade my experience as Willie’s sister; it has given me gifts I might not have had otherwise. Yet I also have to be aware that many of my instinctive reactions flow from a “supersibling” space. Like Maureen, I tend to apologize constantly. When things go awry, I assume that it’s my fault; I take responsibility (and blame) without a second thought. 

It has taken time to uncover these buried beliefs; they’re so much a part of me that it can be challenging to question them. Nowadays, though, I can (sometimes) catch myself when I start walking around with my shoulders up to my ears. I can laugh at my perfectionistic tendencies, and in doing so, I am on my way to being free of them. 

In fact, Willie himself has helped me to loosen up, just by being himself. He loves to laugh and play; he’s unabashed in his enjoyment of life. With him in mind, I won’t shoot for ‘perfection’ at the conference. Instead, I’ll aim to have a blast.

It's not fair! 

Who do they think they are? I'm just trying to contribute some good ideas! 

Why do they have to be such dictators, anyway? 

Why doesn't my boss like me? What did I ever do to her? 

If I did anything wrong, why don't they just tell me? 

I just took worker's comp/medical leave/vacation that I was entitled to, and now my job is in jeopardy?! I'm doing what I'm supposed to do, so why am I still having problems?

Aren't they supposed to hear my side of the story before jumping to conclusions about me? 

What in heck is going on around here ... 

... and what do I do about it? 

For anyone who wants to work for somebody else, Cynthia Shapiro's “Corporate Confidential: 50 Secrets Your Company Doesn't Want You To Know—And What To Do About Them” is for you

First, Shapiro's got cred. She's a consultant who helps businesses better manage their employees, and employees better manage their careers. She spent years as a vice president of Human Resources. She's done the dirty work and seen it all. For example, she notes that, I once had to fire someone with four kids right before Christmas. When he asked me why, I couldn’t tell him it was because he said something in an all-company meeting that the CEO took as [an] insult.” 

The basic message: It's all about their agenda and needs, not yours. Figure out what they need, and fulfill it.

Shapiro describes management's agenda: To protect both themselves and also the firm they've worked so hard to develop and/or maintain. We need to know how they intend to do this, so we can figure out how to stay on their good side.

One of her most important points: Even though you're doing something they'd really rather you stop doing, they have strong reasons not to tell you

Management may avoid telling you because you may get really ticked off, and then maybe just argue with them, maybe quit, maybe stay but slack off in resentment ... or even sue them, with or without justification. (The latter possibility is why private one-on-one feedback meetings are going out of style. People increasingly want witnesses just in case the person they're criticizing comes out with a very different version of what happened at the meeting.) 

Another reason is that they'd rather you stop doing it on your own because you've changed as a person, not because you just want to get ahead. Keep in mind that many corporate behaviors which bosses insist on may seem pretty arbitrary or worse: filling out applications just so, showing up on time (if not early) every day, dressing up in a nice shirt, slacks (if not a suit and tie) and dress socks/hose and dress shoes, etc. 

Why don't managers tell you to shape up? Hey, if you give someone a gift and he doesn't thank you, what would it be worth if you asked him to thank you and he did? Not much. The thanks are worth much less in themselves than as a signal of what the person will do willingly. And if you want to get beyond the worker-bee level, your bosses will need for you to step up and do lots of things willingly, not because they're standing over you and telling you to do each and every little thing. 

That's why managers have secret standards. The ones who pass the unwritten little tests prosper because they've shown they've got what it takes.

Most importantly, Shapiro provides actionable, specific advice for advancing your career. Among other things, volunteer beyond your assigned tasks—especially for things your boss hates to do. Openly support, even cheerlead for, your company and keep everything you publicly say positive. Also, when something needs to be said privately, seriously consider saying it face-to-face only. And alongside these and many other great tips, she explains why they work

“Corporate Confidential” gives us a management's-eye view of the corporation—basically, what your boss (and his/her bosses) would love to tell you but generally won't. (And for those of us who'd like to improve on the current system, Shapiro closes with advice on how to manage well.)

If you want to get ahead—especially if you're an Aspie—you should include “Corporate Confidential” in your career resources.

I read with interest a recent study finding that young adults on the autism spectrum have less access to health care transition services than do other special needs populations. The study found that young people with ASD need better services in transitioning from a pediatrician to an adult doctor. Their health needs get much less attention in adulthood than in childhood. This caught my eye because we're navigating that transition now with Reilly. 

I suspect other parents of ASD children share my frequent frustration with our health care system. When Reilly was a toddler, I heard about a pediatrician in our area with a reputation for working well with special needs children. I moved all three kids to that practice, with mixed results. It was a large, well-regarded practice, and although we had one primary doctor, it was next to impossible to get an appointment with her when one of the kids was sick. When we did get in to see her, she seemed hurried and frazzled and I never felt like we got enough of her time and attention. 

Like most ASD children, Reilly had a host of “comorbidities” (what an awful word!). Frequent ear infections, strep infections, gastrointestinal issues, debilitating migraines, allergies, learning disabilities … What we really needed was a medical team, yet I had trouble keeping the attention of one doctor. Sadly, it is pretty much up to parents to search out the services and treatments for our children, with little or no guidance. At least, that was my experience. I often thought the right doctor, or treatment, or drug, or school, or therapist was out there—I just hadn't found it yet. 

The truth, I think, is that what I needed for Reilly didn't exist. Maybe it still doesn't. And now he's an adult and refuses to go to the “little kid doctor.” I have recently switched to a new general practitioner myself, a woman that I like a lot. There is a young-ish male doctor in her practice who I thought might be a good fit for Reilly. I made an appointment during his winter break from school, two appointments, actually. The first was sort of a meet-and-greet session, for the doctor to get to know Reilly, and for Reilly to get a little more comfortable before the actual physical exam. I sat in, giving the doctor Reilly's somewhat complicated history. Reilly didn't engage in the process, and didn't like us talking about him as if he weren't there. Maybe I should have met with the doctor privately to go over the history. On the other hand, I thought it was time Reilly started to own his body, his health, his “disorder.” He needed to hear it all. 

The physical was a few days later. Reilly went, grudgingly. Going to the doctor, twice, during his winter vacation definitely was not on his agenda. I sat in again, thinking that at some point the doctor would kick me out so he could talk to Reilly privately. He didn't, but maybe that's for another appointment. Again, Reilly remained passive, as if this didn't have much to do with him. 

I liked the doctor. He's a believer in a holistic approach and stressed the importance of nutrition and nutritional supplements in treating many issues. He sent us home with magnesium capsules, and recommended B vitamins, Omega 3 and probiotics, for starters. He ordered blood tests and said he might have more recommendations when the results came back. 

Reilly refused to take the handful of capsules we ended up with. He couldn't really explain why. He simply didn't want to. He's never been happy about taking vitamins, and I don't push—gotta pick my battles wisely! He's not very compliant about taking his medication at school and I realized he likely wouldn't be any better with vitamins. I explained that these supplements could help him feel better and more energetic; they could help his tics and his ability to pay attention in school. 

I packaged each day's pills together in little bags, to make it easier for him. He said he would take them, mostly to get me off his back, I think. When we talk now, I always ask, “Are you taking your vitamins?” He gives me an exasperated “yes.” I have my doubts. In September, I sent him a 90-day supply of his tic medicine. Much of it came back home with him at Christmas. I could give his medication to the school nurse to dispense, but that makes him feel like a baby. 

The issue, I suspect, is that taking his medicine, or even the vitamins, is a reminder to him that he isn't “normal.” I don't know how to fix that. And the bigger, more long-term problem, as the study suggests, is getting Reilly to own his health care—to learn to take care of himself, to eat well, take his medicine, get some exercise, go to the dentist and doctor regularly. I won't be here to coordinate all of that forever. 

The University of Missouri study suggests that pediatricians begin to talk about the transition to adult services when their patients are about 12 years old. It also recommends that young ASD patients, their parents, pediatricians and adult primary care doctors meet to discuss the young person's needs when it is time to transition. Do busy doctors today really do this? Maybe it happens more often for kids who are more impaired than my son. Our pediatrician offered no help in making the move to an adult doctor. I did ask for a recommendation, and she scrawled a couple of names on her prescription pad on her way out the door. 

The author of the study concludes that “most people with ASD are younger than age 18 right now, so in the next decade we're going to get an influx of adults with ASD. Our health care system is currently unprepared to treat their needs.” 

I would agree.

I took Cameron to the mall last weekend, and oh what a joy that was! Usually, Cameron enjoys a trip to the mall. He goes his way, I go mine, we meet at a designated time and place, and everyone is happy. (Especially after we’ve each had our favorite milkshake.) This time was different. This time there were tasks at hand that required Cameron’s involvement, and he was not very enthusiastic about this involvement, to say the least. I guess I should consider myself lucky that I very rarely consider my son unpleasant to be around. I wish these thoughts of gratitude sprang to mind when I’m in a crowded mall dealing with a very grumpy young man.

The tasks requiring Cameron’s involvement were rather straightforward: he needed new glasses, new shoes, and a new battery for his watch. Of those three tasks, the watch battery was the only thing Cameron wanted to accomplish. (For someone as punctually proficient as he, a lagging watch is an extreme nuisance.) I was taken by surprise, however, at how reluctant Cameron was to participate in the process of picking out new glasses and new shoes. At the glasses store, I got a lot of “Eh ... yeah, they’re alright.” I never felt he was expressing his true opinion, until we got down to ordering a pair of frames, and he finally said that the color wasn’t really speaking to him. And so we began the selection process anew. Still not much enthusiasm, but a selection was made. When we returned to the store to pick up the completed glasses, Cameron didn’t want to wear the new frames. I can understand that his eyes needed to adjust to the new prescription, but a week went by before I noticed he still wasn’t wearing the new frames. I finally prompted him to wear the new frames the next day, and he complied.

So we got through the glasses purchase, but on the way to the mall I realized that he was wearing the same athletic shoes I had purchased for him three years prior. (What can I say? Time flies!) I told him it was time to buy new shoes. Cameron seemed to take offense at the idea. Of course, when it came to picking out shoes, he gravitated to the most expensive variety. I was grumbling. He was grumbling. I requested the wrong size. The sales person was rolling his eyes. Finally, we bought some shoes. I preemptively prompted Cameron to downgrade his old shoes to lawn mowing shoes and wear the new shoes to the gym from now on. He complied.

I must be a glutton for punishment, because I heard myself asking Cameron on the way out of the shoe store if he needed any new shirts. “NO!” So, we got milkshakes instead. Between sips, I “gently” suggested that Cameron go through his seemingly endless pile of shirts and get rid of the ones that are too small. Five days later, I noticed one of his T-shirts in the donate pile at home. So yet again, he complied. I don’t know if I’ll ever understand Cameron’s reluctance to part with the old. But I am eternally grateful that even in his grumpiest state, he remains compliant. 

First published on September 6, 2011.My name is Michele Langlo and I’d like to tell you a bit about myself, but mostly about my son, Cody. During his first six months of life, everything with Cody seemed to be normal up until it came time for him to sit up on his own and crawl. These were the first things we noticed that he did not do as quickly as other babies. And when he did finally start crawling, he dragged his head on the ground. He looked somewhat like a little, human bulldozer. Then we saw the gradual loss of eye contact. He would not make eye contact when spoken to, not even by me. He had finally started walking at 13 months but was terribly unstable. Falling down after a few steps was a constant problem for about a year. He had started talking at a normal age, saying "mama," "dada," and the like. But that too, began to decline. Soon, words were replaced with grunts, babbles, crying and screaming. The twos and threes brought raging tantrums if Cody did not get what he wanted. Attempts at discipline such as time-outs would result in all-night battles. Sometimes Cody would become too tired to fight anymore, and he would fall asleep in his chair. But that was a rare event. More often than not, I was the one who became too tired to keep battling. So I would hold him on my lap and rock him until his tantrum subsided. That was much easier on both of us. When Cody was 3 years old, we had him evaluated for hearing loss because he wouldn’t respond when he was spoken to. We then had him evaluated for developmental delays. It was then the team of child psychologists and other child development experts who performed the evaluations said he met all the criteria for autistic disorder.Cody was 10 years old when his teacher in the Special Education program at the public school he attended said we really needed to consider a psychotropic medication to help control his behavior. He had become very unruly and disruptive in class, and at home. The idea petrified me! I had heard the horror stories of the side effects these medications could cause, particularly those of the anti-psychotic class. Tardive dyskinesia, which is a side effect of many of the drugs, was at the top of the list of my fears. But a highly respected child neurologist assured me there were now anti-psychotics which rarely caused tardive dyskinesia or any other severe side effect. But, first he wanted to try a blood pressure medication that had proven to have significant effect in controlling behaviors in children with autism and other cognitive disorders. This medication worked well for a couple of years and then began to lose its effect. So Cody’s doctor added another medication to the mix, which worked well. Along the way, Attention Deficit Hyperactive Disorder began to rear its ugly head. With the doctor’s advice we tried several other medications, all of which seemed to work wonders in the beginning but then depression would appear and end with Cody engulfed in a full-on, blind rage. After what was close to a heated debate, I stood my ground and said, "No more ADHD meds." The doctor conceded to my adamant demands. Once all the experiments with medication had stopped, Cody slowly began to progress in the way of behavior control, communication, and eye contact. Finally, he began to enjoy life. Cody's high school years were full of meetings with the Special Ed staff at his school. They found I was no push-over when it came to my son's education. When the subject of less desirable behaviors came up, they seemed to think more or different medications were the answer. But, I was not about to stand for that again. I insisted they focus on more challenging learning tasks. They started a curriculum which included writing, computer skills, language skills and other things. Cody became much more compliant. These were many of the struggles Cody, my husband, and I faced together as a family during Cody’s years from birth through high school.  While we had overcome those struggles, new ones lay ahead.

It was a bitterly cold February evening, and our hot yoga class was drawing to a close. We, the students, were tired but happy, spent yet satisfied. Our sweaty hands were slippery on our mats, but we continued even so. The practice was challenging, but we were eager to follow our teacher Ashley’s prompts. The yoga studio is a space of simplicity and obedience, a place where we move and breathe as one. I love the quietude, and the way in which yoga allows me to “turn off” my mind. In the studio, I bask in the absence of stress, worry, and future-oriented thoughts. There is only this pose, and then the next. There is only now. 

Recalling this, I consider how yoga can provide a similar respite for adults on the spectrum. Practicing yoga can quiet down internal “noise” and mitigate experiences of sensory overload. Certain poses soothe the nervous system, giving the body and mind permission to rest. And the benefits don’t end on the mat. As Stuart J. Lawrence wrote in Stretching Treatment Options:  Yoga and Autism, “... once they [autistic adults] learn yoga and embrace it, they can often internalize it as a coping tool without further supervision.” This has proved true for me as well; thanks to yoga, I’ve become better at staying present to my brother Willie. It’s an ongoing challenge, of course, but I can feel the progress. 

And so, as we practiced our handstands that night, I was peacefully, entirely present. But then, Ashley did something I didn’t expect. She asked if anyone would like to try kicking up into handstand away from the wall, with her as a support. I’ve been doing handstands for some time, but always with my mat close to the wall, so I hesitated. But when Ashley glanced sideways at me, her eyes seemed to say, “How about it, Caroline?” 

“OK, sure, I’ll try,” I found myself saying. While the fear-based part of my mind said, albeit more softly than usual, What on earth are you getting yourself into?!, the serene part of me said, Go with it. How cool would it be to actually do this? 

All eyes were on me, but oddly enough, I wasn’t distracted by the attention. I was still in the “zone,” still focused. And so, with Ashley standing in front of me, I took a deep breath, placed my hands down, and kicked my feet up. She held them for a moment, then let go, save for a hand between my feet to give me something to press onto. I couldn’t believe it; I was holding handstand all by myself! 

As I lowered myself to the mat, I was aglow with excitement. I was also analyzing the situation, thinking: What factors allowed me to succeed? What made the magic happen here, tonight? I could think of several things: I’d been feeling energetic that day, I’d been practicing the pose on a regular basis, I’d let myself get into a “flow.” But the biggest factor, the one I kept coming back to? I trusted my teacher. Ashley had helped me into other challenging poses in the past, and I believed that she could do the same with this particular handstand. 

After all, aren’t we all more likely to try something new if we can depend on a person asking us to give it a shot? Aren’t we all empowered to do more when we have trusted hands to frame our risks? Those of us who support individuals on the spectrum know how true this is. If they don’t trust their teachers, they won’t make much progress when it comes to mastering new skills. If they don’t work with someone who believes in them—someone who sees and celebrates their potential—then they may never develop these gifts. 

We can’t control others, and we can’t make their choices for them. But we can create environments that encourage growth. We can help individuals on the spectrum to build social, vocational, and life skills. And then, when the time is right, we can dare them to stand tall, a supporting hand there to steady them.

I have recently undertaken some important steps in my evolution as a writer. In a previous column, I described how I have written a children’s book and am preparing to create a whole series. In addition to this, I have established a blog which has given me a place to reflect on my many interests. 

Because of the in-depth training I received, writing and maintaining the blog has proven to be easier than I thought it would be. To learn more about setting up and managing the blog, my parents and I went to see a web designer who also has had experience as a blogger himself. He talked me through each step of the setup process, and I designed the site from the options he provided. He also showed me how everything on the blog functioned. We primarily focused on the “dashboard,” a portion of the site which acts as a sort of backstage area for the whole operation. This is where I compose all of my entries and prepare them for presentation on the front page with all the proverbial bells and whistles. Each part of the site is represented by a tab on a sidebar containing all of the tools I need to work with. With a few clicks, I can easily view blog entries I am working on or have published, comments people have made about my entries, and media files like photos and videos. 

During the training process, however, I was a bit intimidated by the thought that this process would turn out to be a lot more work than I had anticipated. I do enjoy learning about complicated structures or systems and seeing how everything works together to make something run, but there was a lot to take in here. I was concerned by how much I would have to do to prepare each of my entries for publication. In addition to writing the entry itself, I would have to file it under the right categories, attach the right tags, and customize the entry’s description for search engines so it would stand out among other similar sites. In my mind, that was a lot of things to keep track of for just one entry. Going through this entire process every weekday also sounded very challenging to me, and I thought there was a good chance of me giving up before the site got any real traction. After the demonstration ended and all of the details of the site were decided upon, I worried about what might happen if I wasn’t able to make the site work properly to my advantage.    

I was surprised to find that my worries were largely unfounded after working with the blog site for a few days. I took to the system like a duck to water, composing and publishing an entry in less and less time each day. It is now easy for me to navigate around the site and get new material onto it, an accomplishment I am really proud of. This blog has become part of my weekday routine, and I really enjoy it. It has turned out to be very fun and productive. I am looking to increase the number of visitors to the site beyond family and friends, but I understand that it may be a few years before I see larger results than this. Regardless of the hardships that may lie ahead for the site, I view it as a valuable resource for expressing myself and showing my repertoire to potential future employers. I really feel that this blog is a stepping stone to greater things in my writing future, and I am very interested and excited to see what will come out of it.

It was a Tuesday, a regularly scheduled Madison visit-and-lunch day. But it was also my birthday, and, well, I'm going to say it, the “birthday from hell." 

I woke up to the sound of my dog retching. I sat up in bed just in time to see him spill his last supper onto my hardwood floor. I quickly grabbed my transfer board to bridge the distance from my bed to my wheelchair and plunked my body over it and into the wheelchair in record time. 

I leashed the ailing dog, carefully negotiating the hardwood mess and got him outside where he finished his episode and additional business. After some vet-prescribed tummy-settling medication and a small bland meal, he settled into his dog bed, when I suddenly noticed the leak. 

I thought I had it fixed with the last four-digit repair bill, but apparently I didn't. A slow steady drip came down through the room's recessed light, pooling on my oak table. At least it was under the five-year guarantee, although we were only five days into it. I wheeled out to the garage to get a beach towel and placed it on the table with a bucket. 

When I went into the kitchen to phone the contractor, I noticed the dishwasher had water underneath it. I knew the disposal had been acting funny—no grinding, but draining water and then grinding, but not draining—but the neighboring dishwasher seemed fine. 

Until my birthday morning. 

"Happy Birthday, Becky!" Pat, our longtime family caregiver said upon her arrival. "How's it going?" 

"Not good," I said pointing to the dishwasher puddle, and then brought her up to speed. "We'll have to go to our Plan B for Madison today. I think I have the beginning of one of those terrible-horrible-no-good-very-bad-days.” 

She smiled at the reference to one of my favorite story books I used to read to the kids, a Judith Viorst classic of the same name that features Alexander and his mounting troubles. 

"It's just too crazy here. My house is not behaving, nor is my sweet dog. Maybe I can try Skype or FaceTime." 

We had been working on it for a while. Madison had received an iPad for her birthday from a generous family member. We had practiced FaceTime at one lunch meeting, but Madison kept stimming on her own image, and wouldn't engage with mine. 

"What can I say? She loves the mirror and always has," I explained to staff. But with practice, and some familiar scripted conversation, we got her to engage. 

"Hi Madison! How are you? I would ask.

"I'm fine," she was supposed to say. 

"What's up?" I say.

"Not much?" she’s to reply. 

And my favorite: 

"How's life?" I say.

"Not bad?" is her scripted response. 

She was taught this "conversation" over 15 years ago by an ABA (Applied Behavioral Analysis) instructor, who changed our life. In a matter of weeks, my five-year-old went from being nonverbal to using words. 

Granted, Madison was not able to progress to more interactive conversation. But we always had our trusty Q & A’s. And somehow that always comforts me. 

We connected via FaceTime and after two successful responses, I set her up for the grand finale: 

"So Madison, How's life?" 

"Not BADDDD!" she boomed back, bolting up out of her chair, almost out of the screen's range. 

And by the end of that crazy day, it wasn't. 

The dog rallied, roofer and plumber promised next day service, and flowers, family, and a good friend’s visit melted away the day's initial bad start. A red velvet cupcake and 110 Facebook well wishes didn’t hurt either. 

And I smile now at my daughter’s enthusiasm and how her response made me rethink mine. 

Was one errant day, even my birthday, going to let me change my view on life? 

“And remember,” I prompted her in our scripted farewell. 

“I love you,” she replied. 

“Always and,” I said. 

“Forever!” 

Not bad, indeed.

I recently attended yet another information session pertaining to Transition. This one was held at Cameron’s school and was conducted by the “local” community college. I say “local” because the school is close to Cameron’s school, but it’s considered out-of-state for Cameron based on our residence. But before I let myself dwell on the rhyme or reason of paying out-of-state tuition for community college, I wanted to assess the programs this school offered and determine whether or not there might be a postsecondary option tucked neatly away in our not-so-local community college.

I must admit, as I listened to the description of the options afforded students with learning disabilities, I felt myself being swept up in the excitement of what lies ahead. There are countless options with open enrollment courses geared toward lifelong learning. There is a non-credit certificate program for students with learning disabilities consisting of courses designed to help students transition from secondary to postsecondary life, modeled after the credit program at the college. There are courses designed to prepare students for successfully passing the test required to enroll in credit courses. There seems to be something for everyone.

Or is there? With all these options available, what can I expect in terms of outcomes for Cameron? With the exception of the non-credit program modeled after the credit program—which includes job coaching and internships—there didn’t seem to be a lot of afterlife beyond coursework. I don’t mean to sound as if I’m poo-pooing the entire community college offering, but I find it so disheartening to feel myself becoming excited about a potential program for Cameron, only to then be deflated by the realization that at the end of the “exciting” programming, Cameron may be no better off than he was at the beginning of programming. Do I really only need something to fill his day? Well, maybe. But I hope there’s more out there for him than busy work and minimum wage employment.

And then there’s this federal government sequestration situation. It couldn’t have happened at a more inconvenient time. Right when I need to call Social Security Administration to schedule an appointment for Cameron’s SSI application, the public has been advised of the likelihood of longer hold times and difficulty scheduling appointments. As if the 35-minute hold time on a good day wasn’t annoying enough. I’m just relieved Cameron isn’t graduating this year, and that I have another year under the blanket of public education before he must face the “real world.” I think facing the issues of turning 18 in addition to figuring out what comes next in terms of education (and life!) might be too much for me to bear.  

What life after high school holds for Cameron may not be an answer I need to have within the next 90 days, but it is a question that needs answering. I’m just not the most patient person, and I certainly don’t like it when I don’t feel like I have control over a situation. I now realize Cameron isn’t the only one seeking lifelong learning.

Last week while I was scrolling through Facebook I noticed an opportunity to audition to be the host of “World News” for The Autism Channel, an up-and-coming organization to spread autism awareness. Producers were looking for someone on the autism spectrum to do a five to eight-minute news segment Sunday through Thursday. After sending an email to the producers for more information, I was set. Based on my background in Communication, I thought I had to give this a try. 

A few days later I took out my camcorder, sat in my room, cleared enough space to make it look decently presentable and pressed the record button. Eight takes later and with 10 solid minutes of footage, I was ready to blow away everyone with what I had done. I uploaded the footage to my laptop and forwarded my submission off to the producers. 

It was only a few minutes after I had clicked the “Send” button that I started to think about the time I just spent on this. The project in total probably only took me an hour to do, but it got me thinking about how many more hours I would spend a week doing this if I got the job. Don’t get me wrong. This is an AMAZING opportunity but, like many people, I’m always scared of burning myself out. This would add another hat to the abundance of autism hats I’ve committed to wear already. 

Bottom line: Being an autism advocate sometimes is a lot of hard work. Some parents who reach out to me think there’s a lot of glamour with awards and recognition, but that’s only 1 percent of the story. The other 99 percent of the work   comes from the projects I’m doing behind the scenes. The consulting for parents, writing my blog, finishing my book, getting my non-profit status, working on awareness videos … the potential for burnout is definitely possible. 

I’ve known the solution all along and now I’m hoping to take my own advice. The best way to avoid a possible burnout is to prioritize! For us adults with autism transition can be hell at times. Because of this it’s important we are able to establish a core of responsibilities and passions that can give us comfort. 

It doesn’t stop there though. Whether or not I become the next host of The Autism Channel’s “World News” segment, I’m beyond pleased I gave it a shot. When I was younger I would tend to shy away from things like this but branching out I see will be doing me a world of good in the long term. Trying new things and taking personal risks is something that I know many with autism have difficulty with, so as a community this may be a good challenge for the future. There is value to exploring possibilities rather than saying “no” right on the spot. 

Many children on the autism spectrum will reach adulthood within the next decade. Discovering what interests they want to pursue in life means trying new things. But it’s also easy to get burned out. So it’s important to learn to balance interests. The world has a great deal of variety and by establishing our core focuses, not trying too overdo it in some areas and exploring possibilities we can all do wonderful things for ourselves. 

Here’s hoping for the best with The Autism Channel World News and for your opportunities as well.

This past week, I had the pleasure of interviewing two fellow adult siblings for a forthcoming AA16 feature. The three of us have different backgrounds, cultures, and stories, yet all of us seemed to speak a common language of love and experience. When we spoke about our younger brothers, there was an immediate connection. And so, with a hat tip to Ali Dyer of Autism Speaks (author of 25 Things About Growing Up with Autism: The Sibling Redux), I’d like to share with you a list of fourteen “tip-offs” that would indicate you might have a sibling on the spectrum. 

You Might Be an Autism Sibling If: 

  • Your knowledge of Disney movies far exceeds that of your peers. You can quote “Bambi” and “Dumbo” with the best of them. You may or may not know the names of all of the seven dwarves in sequential order in English and Italian. (Your family was once fortunate enough to stay in an Italian hotel containing statues of all seven dwarves. Your sibling was in heaven.) 
  • Even as an adult, you find yourself referencing said Disney movies and other cartoons on a daily basis. One minute you’re feeding your cat, and the next you’re walking around quoting “The Cat in the Hat” movie (“In English cat, hat; in French, chat, chapeau; in Spanish it’s el gato in a sombrero!”). 
  • You find the strangest sentences coming out of your mouth, but you mean them sincerely. When a friend asks after your family, you say, “Nobody has a black eye today. We’re great!” 
  • You are more likely than most to speak up when you hear someone throwing around hurtful terms like “retard” or “stupid.”
  • You know your childhood had challenges, but it also had unique joys. And you can’t imagine who you’d have been if you didn’t grow up with your specific sibling. (In fact, you don’t even want to try.) You know that (to paraphrase Anne Lamott in “Blue Shoe”), the price that you and your sibling have paid is exactly what it cost to become who you are. 
  • You are so proud of your sibling, just for being themselves. Who else do you know that would dare to ski straight down a mountain? Who else would believe that their restaurant meatballs were “still growing” because they had parsley on them? Who else would teach you what it means to communicate without words? 
  • You are exquisitely sensitive to the triggers that make your sibling uncomfortable or upset. When the sound is too loud, the tag is too itchy, the schedule just changed unexpectedly, and the environment is overwhelming, you are among the first to notice and respond accordingly.
  • You get so accustomed to the sight of adaptive equipment (such as noise-canceling headphones and weighted vests) that it actually takes you a minute to think and respond when someone asks, “What is that?” 
  • Babysitting isn’t as much of a challenge for you as it is for your peers. You can deal with a screaming baby and a poopy diaper; at home, you’ve dealt with much more than that. Your sibling has probably run away from home, danced naked in the front yard, and walked into the local duck pond with the police in pursuit … all in one afternoon. 
  • You always pack more than you think you’ll need when traveling. Years with your sib have taught you to bring extra food for sustenance, a change of clothes, and a great deal of flexibility along with you (because things are not going to go according to plan). 
  • You hear acronyms like IEP (or ISP), ASD, and/or PDD-NOS on a regular basis, and could explain them to others if necessary. 
  • Though you know they’re not perfect, your parents are your heroes. 
  • You’ve learned that staying present is the secret to staying sane. 
  • The one thing you know for sure? That nothing we do for love is wasted. 

Recently here in my little corner of the special education world, I have been spending inordinate amounts of time pondering an issue never once addressed in a single one of my graduate-level special education classes. That issue is (drum roll please….) body odor. Yes, that’s right. Several years and thousands of dollars worth of tuition, not to mention years of practical experience, and I am stumped. So perhaps if I put these thoughts out there for public consumption, either the answer will come to me or one of you may have an idea for a solution not yet attempted. Here’s hoping.

I have any number of students who, on any given day, are not going to pass muster as workers in the community. Because let’s face it, how an employee looks—and smells—matters. In some cases, the students are simply still a bit too young to appreciate the importance of “dressing for success,” and this is one of the lessons we strive to teach. Others get it, but are still working on internalizing and generalizing, so it’s a process. But then there is that select group, that should get it by now, and don’t. And when I say they don’t, I mean that I have spent more time than I thought possible jumping through every possible educational hoop I can think of to get the message of why it matters through to them. In more than one case, there is complete denial on the part of the student that there is any issue that needs to be addressed in the first place, which makes things that much more difficult. I would guess that we all get used to certain sensory input, including smell, and after a while the aberrant becomes the norm. Unfortunately, in these cases, I find that this is where social learning deficits rear their ugly heads. These young people just don’t get it. If there’s an odor and it’s not bothering them, then why should it bother anyone else? It would seem that’s the part creating the biggest stumbling block the educational team is facing here.

Like so many situations that come up for me as an educator, I have had the pleasure of living the lesson first-hand. Looking back, I have very clear recollections of how atrocious my personal hygiene was when I was younger. Worse to admit still, I know how easy it would be to fall back into old patterns under the “right” circumstances—too much unstructured time, depression, anxiety—none of which make navigating the social world any less challenging for Aspies such as myself. I have (finally!) come to a point where I can just “get it,” that I have to shower every day no matter what because that’s what’s expected. And lo and behold, it actually does feel better to be clean than dirty! I remember too, the unpleasant sensory input I would actually get from my hair when it was unwashed. I look back now and wonder how I stood it, but that question exists side-by-side with the memory of how at the time, all was good. What I don’t recall is anyone ever calling me out on my less-than-optimal self-care. And in the end I believe that probably did do me more harm than good, because part of what makes it so very easy for such yucky habits to become ingrained is when no one points the yuckiness out to you and you cannot see it for yourself.

So I suppose, having said all that, at least a part of my solution for the current situation where I get to see things from the other side of the street, is to keep the conversation going. I want these students to continue to see me as someone they can trust, but not if it means that I fail to do what I was brought here to do—teach.

After I wrote my first installment of “Life of Reilly,” I started to worry—about Reilly reading it. How would he feel about me publicly airing some of the less pretty parts of our lives? And potentially embarrassing details about Reilly himself? I've always been something of an open book. Not good at keeping secrets—so don't tell me any! I knew that I would share the column on Facebook, and Reilly is one of my Facebook friends. He, perhaps wisely, blocks me from seeing most of his Facebook posts. Those boundaries don't necessarily go both ways; Reilly is FB friends with most of my friends, as well as his father’s and brother's and sister's friends. I thought maybe I could block him from seeing Autism After 16 posts, but he's computer savvy and he would find a way. 

A good friend told me that I should write under a pseudonym, but that didn't seem right, either. The point is to share our family struggles, because so many other families do share our struggles. But Reilly has been reluctant, to put it mildly, to discuss his personal issues. When he was younger, I found a children's book about a professional baseball player who suffered from Tourette Syndrome—Reilly's first diagnosis. He refused to read it. When I try to talk to him about Tourette or autism, he clams up and gets away as fast as he can. But I knew I would have to talk to him before the first column appeared.  

Like most young adults, Reilly seldom answers his cell phone, at least when Mom is calling. So I sent him a text: “Hey bud. I need to talk to you about this new writing job. I'm going to be writing about us, our family. Is that OK with you?” “Yeah, it's ok,” he texted back immediately. “You sure? Maybe I better send you the first column?” “Yes, send it to me.” 

So I emailed the column to him. Since it was partly about his grooming habits, or lack thereof, I held my breath, not sure what I would do if he objected. He replied pretty quickly: “It's a good article. BTW, I've been showering more often, now that I have a GF. So you should be happy about that.” 

That's girlfriend, for anyone unfamiliar with teenspeak. It was news to me! I teared up, overwhelmed by his news and his generosity. He's giving me permission to write publicly about issues he won't discuss with me. Maybe this column is how Reilly and I will communicate about important matters. I promise, Reilly, to respect some boundaries, to try to stay positive, to recognize that you are, in very many respects, a normal 19-year-old guy.  Love you, buddy! 

P.S. The next day he texted me with the news that he had applied for a summer job working the front desk at our neighborhood pool. I’m crossing my fingers for him. Though I'm still not sure that living at home this summer is the best idea. We'll see …

First published November 7, 2011.There have been times in my life when I would have given anything to have a peek into a crystal ball. I find this transition phase of Cameron’s development to be such a moment. I’m one to those people who need a plan. I obsess over details of that plan, and see it through to the bitter end. I’m finding myself struggling to make a plan for Cameron’s future, even though I so desperately want to. If I could just peek into a crystal ball that would show me what Cameron will be like three to five years down the road, it would make life so much easier!You would think that being the parent of a child with disabilities would require that I develop a fair amount of patience along the way. Not so much, especially when it comes to planning Cameron’s future. Having the vast world of the internet at my finger tips has not helped matters. I find myself Googling the most obscure things in an attempt to find a clear path for Cameron. Just for example’s sake, I’ve found myself researching: course offerings from community colleges, US News & World Report’s college ranking website (for highest acceptance rates), and car safety data in the event Cameron passes his written exam and needs to buy a car. I’ve drawn the line at looking up rents for nearby apartments, but there are days when I’m tempted. Of course, this is all rather pie in the sky. It’s not as if I have unlimited access to cash to fund these endeavors. Could I please just have a peek in that crystal ball to see if Cameron will be able to earn an income to support himself? If Cameron can’t get by with the typical amount of support a young adult gets from their parents, then what? Will postsecondary education provide him anything more than a few schedule entries on the days he attends class? Or will he suddenly experience some sort of developmental milestone, and actually be able access curriculum in a fully integrated setting?It’s interesting how my thought process has changed over the years. I’ve gone from thinking postsecondary education would be a wasted effort for Cameron, to considering the possibility of him attending a four-year college as a non-degree seeking student. But as my path matures, it makes me that much more anxious to see where it will come out. I realize even a crystal ball affording me a peek into the future might not be enough to squelch my anxiety. I’m probably looking for something more along the lines of the Gwyneth Paltrow movie, Sliding Doors. In this movie, we get to experience two versions of the heroine’s life based on dumping the loser boyfriend or sticking with him. Wouldn’t it be grand if we could see how our futures would be altered for all those major decisions? Would paying for a couple of years away at “college” help Cameron grow socially, emotionally, and academically? Or would the money be put to better use spread across more time while he lives at home?Ah well, if this were a Hollywood production, it would have plenty of potential for sequels. But alas, I must make these decisions without a crystal ball and without a Hollywood ending. I’ll just have to make do with good old fashioned gut instincts. Wish me luck!

It has a been busy two weeks. We met with the program director and staff at the facility I discussed in my previous columns and for the most part we liked what we saw.

When we arrived we were seated in a conference room with the director and Cody’s service coordinator, Tonia. We discussed the things in Cody’s plan and how his imminent needs were learning everyday life skills and better communication with others.

During this time Cody paced around in circles nervously. I asked him to sit down a few times which he did, but it was clear the nervous energy was too much. Rather than have him go into a meltdown, I decided it was best to let him walk around periodically.

The program director, Cindy, asked if he had any ADHD meds on board. I explained to her we had tried them in the past and it ended in disaster. To my surprise, Cindy assured us that Cody was not alone in such an experience with those types of meds. She and Tonia almost simultaneously asked if Cody had ever had any occupational therapy, particularly the kind where what they called “a sensory diet” was employed. I said no.

A sensory diet is when weighted vests, blankets and other such things are used for short periods at a time. There are also different toys such as stress balls which are made with different textures on the outside. Using these things helps to calm nervous activity for many of those on the autism spectrum, and with great results for some. I told her I would get a referral from Cody’s doctor.

Cody and I agreed to spend the day in classes with them last Wednesday. (It is not typical for parents to attend these classes on a regular basis, but they allowed me to attend with Cody one day so I could have an idea of how their program is run and how receptive Cody would be to it.) We worked on making decorative tiles which the program participants make and then sell to staff and others at sales they hold weekly. This is a way for the consumers of the program to make money to spend when they go on outings.

We then went for a walk at the mall. It was a weekday and still fairly early in the morning, so the mall was not crowded. Cody and the other three people in his class enjoyed themselves very much. They were able to walk about by themselves as long as they were not out of line of sight.

When it was time to leave we walked through the food court. There are many fast food stands and many of them have employees who hand out food samples. The instructor explained to Cody and each of the other participants they could each have one sample. He explained that samples are for trying that particular food only to see if you like it. They are not for making a meal out of.

We then went back to the facility and had lunch. We were instructed to bring our own ingredients but participants are encouraged to make their own lunches. Cody and I made our sandwiches and ate with the others.

Once lunch was finished we made stress balls from balloons and corn starch, participated in a healthy eating class and then it was time to go home.

We still have all the paperwork to complete which will take up to a few weeks to be processed and approved through the Partnership for Hope Waiver, but we are going to give the new facility a try. It seems as though Cody may qualify for 18 hours of services there per week.

Cody’s doctor made the referral for occupational therapy but once again we were told Medicaid would not pay for these services for anyone over 21 years of age.

Tonia told us she is putting in a request from the service provider’s Board of Directors to see if they would help fund some services for Cody that were not covered by Medicaid or the Partnership for Hope Waiver. She said she could not put in a request for both speech therapy and occupational therapy so we had to choose which one we wanted. I told her that I felt speech therapy would be more important at this time.

In the meantime I will be doing research on what I could do here at home in the way of a sensory diet, and trying to keep a positive outlook on the new things in Cody’s future.

Our home renovation isn’t complete, but we’ve started inviting friends and family to come and share meals with us anyway. For a time, I felt I couldn’t welcome people into a “not-yet-fully-presentable” house. But then I came to see that, if I clung to an ideal of homemaking perfection, I’d never have people over. If I believed that everything had to be perfect before we would open our doors, we’d all be missing out. I wanted to start strengthening connections now, not at some elusive future date when every wall would be painted. 

And so, this week my husband and I have had three sets of guests come to our home. We’ve enjoyed acting as host and hostess, and yet facing down false beliefs about “hospitality perfection” has brought up some related fears. 

For example, one night we were preparing to have two friends as dinner guests. I was glad at the thought of welcoming them, and happy that my husband and I were doing a good job coordinating tasks. He baked the acorn squash, and I sauteed the zucchini. I set the table, and he made sure our cat didn’t jump all over it. Nevertheless, I was in tears a half hour before our guests arrived. 

Why the waterworks? On the surface, it was nothing: I’d tugged a cord too forcefully and raised my voice when the cat tried to pounce on me. My husband had gently asked if it might be possible to do these things differently in the future. Most days, I would have taken this in stride. However, a series of smaller mishaps earlier in the day had been gnawing at my heart; they were all little things, but together they rendered me insecure and unsure. In that moment, I felt as though I was screwing everything up, and I couldn’t hide it. I broke down and admitted that I felt like an incompetent failure at life. 

And as the tears ran down, a thought arose from a deep-buried part of my mind. I no longer felt like a 27-year-old woman, with a family and home and life of my own. Instead, I was a little girl, trying so hard to make straight A’s and never mess up. The thought was something like: “You have to keep it together. If you drop the ball, things will fall apart. Your brother has autism; your parents have more than enough to deal with there. So you have to get everything right. You have to be perfect.” 

Clearly, this is ridiculous. It’s a lie my family would never have wanted me to believe, a burden they’d never have wanted me to bear. Even so, some secret part of me was—is—still tempted by it. And I can see why: It’s sort of seductive, to think that, if you try hard enough, you can magically make things better for those you love. (It’s self-improvement witchcraft; I just wave my older sister wand and voila!) The problem is that life doesn’t work that way. Yes, I can contribute and love my brother, but I don’t have the power to “fix” things. And perhaps it’s an illusion that they need to be fixed. Perhaps things are simply meant to be as they are. 

One of my favorite lines in Anne Lamott’s novel “Blue Shoe” comes when main character Mattie and her brother Al are watching waves batter a seabird. Al wants to rescue the bird, but Mattie knows that the animal is dying and would rather be in the ocean than in human hands. She says, “There’s no fixing and no saving, Al. There’s helping sometimes, but not this bird.”  

All of this flashed through my mind as I wept. My husband did the best things he could have done; he held me close, reassured me of what is real, and made me laugh. As I wiped my eyes, clarity came: The beauty of being Willie’s sister is that the experience itself debunks that “you can’t screw up” lie. After all, why would I pretend “perfection” when I have seen that love—messy, forgiving, tenacious love—is the real magic?

A short time ago, I was watching an old Valentine’s Day special on television in which a few characters felt the pain of unrequited love. Each of them attempts to gain the attention or affection of another character only to have their efforts sabotaged at each turn, either through an outside force or by some fault of their own. Each time, they complain that they might never feel love. I have seen the special a few times, but on this viewing, I kept thinking about how I personally conceive love. I generally have positive feelings about love; I have a hard time thinking of moments where my desires for affection have gone unanswered.

To me, love means being close to someone you truly care about. Even though I do not like it when people get too touchy-feely with me, I do enjoy a quick hug or kiss as a small token of affection. The sense of contact with someone makes me feel very satisfied knowing that person cares for me. 

When I was young, I relied a lot on my parents for support when I was placed into unfamiliar or uncomfortable situations. They were close by if I got too scared, ready to comfort me with a warm embrace and encouragement to try again. As I have gotten older, I have become more comfortable trying new things either on my own or with other people, but I still enjoy being with my parents the rest of the time and they still give me comfort when I am afraid.

When my cat Precious was still alive, I showed her the same sort of love that my parents gave me. I often gave her small hugs and petted her when I felt she was afraid (she often cried softly when she got older). When I showed her affection, she usually purred and appeared to greatly enjoy my presence. This positive feeling is the same kind of feeling I like to share when I give signs of affection to others. When I feel happiest, it can rarely be said that there is a quiet moment because I often make small noises during these times.

Of course, there have been occasions when my desires for affection have been temporarily denied. Sometimes my parents are busy or I do not want to be around them.  At other times, such desires are not appropriate for the situation. During these periods, I sometimes feel like the characters in the TV special I previously mentioned. The world seems a lot less accommodating, and I feel very lonely and unwanted. It is not exactly a heartbreaking situation for me, but the depression can be hard to deal with. At such times, I do not feel like showing anyone around me love until I can sort things out. Fortunately, these moments often pass by quickly, a welcome change in my view.

I take expressions of love and affection very personally. I have come to treat them as emotional hooks that keep me tethered to those who I care for and who care for me in return. They also come often enough that I am certain there is little chance of my suffering the prolonged depression the characters in the TV special expressed. Just in case this does occur, though, I will continue to appreciate moments of love and give love to others around me in return.

“I have sad news,” Mickey said, coming off the school bus. “Molly died.”

Molly was a beloved administrative assistant at his school. She’d been battling lung cancer for two years.

“I feel so sad,” Mickey told me. “Even my Muppets are sad.” That’s his way of underscoring the intensity of his feelings. 

All through dinner and into the evening, he continued to ask about Molly. “Why did she die?” “Was she old or sick?” “Does she have children?” “When will she be buried?”

Early the next morning we emailed his teacher a heads up that Mickey was upset. She wrote back: 

“Mickey was talking about Molly's death here, too. Another student made a big announcement in the classroom; we as teachers, felt it was up to parents to decide if and how they wanted to let their children know—it was unfortunate that {the other student} announced it that way, but that's the way it goes sometimes. We did acknowledge Molly's death to Mickey and helped him through it here. We will continue to do so should he continue to want to express himself.” 

We’ve struggled down this road with him many times in the past few years. I come from a large family, and many of my elderly aunts and uncles have died. Every time Mickey has asked the same question: “Were they old or sick?” In the past year and a half, two of our four cats have died, and recently he has seen several family members and friends lose loved pets. Each time he has asked the same old or sick question, followed by, “When are my other cats going to die?”

It’s hard to talk about death in general; even harder to explain it to Mickey. We tell him that even after someone dies, the love we feel for that person lives on forever in our hearts. But at 20, he is still very literal and concrete in his thinking, so we’re not sure how he processes this idea of death.

What we do know is that he is grappling with a lot of loss and change this year. All his friends from his old school’s self-contained life skills class have gone on to postsecondary programs; Mickey is spending his last year as a student in a transition program in a different school. My husband Marc and I have been visiting day habilitation programs, trying to find one that will meet Mickey’s needs. We are calling whatever comes next “college.”

“Do I have to take a plane to college?” he’s asked several times. We offer comfort and reassurance. “You’ll still live here at home with us and the cats,” we tell him. Twice in the past six months he has wound up in the emergency room; he is feeling vulnerable. Again and again he says, “Come in my room and sit with me.” Hoping to help him find words to express what he is feeling, I have asked him, “Why do you want me to sit in here?”

Each time, he says simply, “Because I love you.”

Getting on the school bus the next morning, he noticed one child was missing. “Where is she?” I heard him ask the driver. “Did she die?”

He was brooding; his anxiety was palpable. All day I worried, knowing that when he feels that way, he can sometimes gets belligerent. Whenever the phone rang, I expected it to be his teacher, reporting a meltdown.

But the call didn’t come. At the end of the day the teacher sent an email:

“Mickey and I talked about Molly this morning. I suggested he make a card for her family and he liked this idea and made three. He also wanted to buy flowers for the family from the A&P. A staff member who is going to the wake tonight will take his cards and flowers to the funeral home; it was very thoughtful of Mickey to want to do these things. We know he has a good heart :0)” 

Indeed he does. And the heart, as they say, is a very resilient little muscle.

While on a recent book store visit with my daughter, I found myself wandering over to the ever-growing “autism” section. Well, to be honest, autism does not have a section in its own right, but it does take up the lion’s share of the parenting section. As I browsed, I was surprised to see a picture book entitled “All Cats Have Asperger Syndrome by Kathy Hoopmann. I read the book and greatly appreciated its intent, which is to explain AS in terms that a first grader might understand.

When it comes to my son, it is my hope that the general population will understand him as he begins to face the world on his own. “All Cats Have Asperger Syndrome” is a literal illustration of the basic understanding I’m looking for. As a parent of a child on the autism spectrum, it’s hard to imagine not knowing the basics of what autism is, or even not being able to armchair diagnose from a distance of 50 feet. I’m reminded of being in Target one evening and hearing a child in the next aisle over. I knew without even laying eyes on the boy that he was on the spectrum. ‘Lo and behold, I rounded the corner, and it was a mom from Cameron’s school with her son whom I’d never met, but had heard much about. While my ASD detector may be finely tuned, I tend to forget that there are people out there for whom autism is still a great unknown. Lucky them! They are an endangered species, I’m afraid.

I admit, when I think of Cameron out in the community on his own and one of his tics or quirks surfaces, I assume that for the most part, people will look at him and knowingly nod their heads. They will recognize his behaviors as something familiar. They will have seen similar behaviors at Thanksgiving dinner at their cousin’s home, or will be reminded of the bagger at their favorite grocery store. But I have to remind myself that I may be overestimating the acceptance of the general population. I’m reminded of the (insert your favorite expletive representing a donkey’s behind here) that said “What a brat!” when 4-year-old Cameron was having a tantrum in the grocery store. Could there really be ignorance like that still out there today? Sadly, I know the answer is yes.

So I’m glad to have found “All Cats have Asperger Syndrome.” I only wish it wasn’t tucked away in the parenting section. It would be great to find this book in the picture book section. And in the cat section. And in the required reading section. And in the education section. Everyone needs to know about autism. It’s not an excuse. It’s a reality. I realize that I’m preaching to the choir. I doubt there are many readers of Autism After 16 that couldn’t spot that child in Target as I did. But maybe this revelation of mine could serve as a reminder that strength in numbers may not be strong enough. More diagnoses doesn’t equate to more understanding. 

“Kerry, what would you like to do when you grow up?” 

Oh how I loathe this question. 

After finishing my graduate courses a few weeks ago, I’ve been in a state of uncertainty. For many this is the time of the big transition from student to employee. For adults with autism this can be seen as an even bigger transition. So I’m taking some time to apply to several places and weigh my options. 

During this time I’ve also gone around my hometown of Jersey City and set up interviews with executives in businesses to gain information. It’s one of those things I’ve done ever since I was a kid. Asking questions and talking is something I never seem to stop doing. I’ve learned a lot in the past few weeks but I’m still overall in that place of uncertainty. 

I think that’s part of the nuts and bolts about my autism specifically. I’m very data-oriented and I like to have more information than less every single time. My undergraduate degree in Business and then my Master’s in Strategic Communication have left me with what seems to be an endless amount interesting fields to investigate, but also the opportunity to overthink the decision of how to head in any one direction. 

While this has all been going on, I have also been thinking about how blessed I am to have potential opportunities available to me. A few days ago I was having a conversation with someone in housing development and while I was telling them about my background I blurted out … 

“Honestly, just looking at where I was, to where I am now… I’m really lucky to be where I am today.” 

It’s weird because as many times I’ve said this aloud, I don’t know if really ever thought about this and taken it to heart. It has been a revelation for so many reasons because it has made me even more confident about the one thing I want to keep doing which is helping others. This has better helped my understanding of what I want to do in terms of nonprofit work. I hope this leads me to continuing my work, even in a part-time capacity, with autism advocacy groups. 

As much as my world starts to change as I take off the student hat and replace it with the other, I need to remain cognizant of who I am and what has gotten me to this point. It’s the big thing with our autism community. We want something constant which can give us even the smallest sense of comfort. Autism advocacy is my constant. By continuing this work and approaching every day one day at a time the question of “what would you like to do when you grow up” will at least start to look less scary than before.