Over the past year at my job at Autism Speaks I’ve seen countless news and feature stories covered on our website. Three items that have been very inspirational have involved people in our autism community giving TEDx talks. TEDx talks have become very popular over the past few years for their ability to start dialogue in local communities about important issues. Most TEDx events consist of a day-long conference which showcases several talks, each one lasting 18 minutes or less.
The three talks that I found inspirational were:
Each talk provided me with greater insight into the autism spectrum. Wendler discussed his experience growing up on the spectrum and teaching social skills to others with learning disabilities now as an adult on the spectrum. The D’Eris offered insight regarding a father and brother’s perspective on having a family member on the autism spectrum. Then there was Barnett’s story which was brilliant because it discussed what he felt his future has in store as he moves into adulthood.
These talks were all truly inspiring to me. A few weeks ago I learned about a TEDx talk that was going to be held in my hometown of Jersey City called TEDx Jersey City. Applications were open and if accepted, applicants would audition to be part of the TEDx event. My mom encouraged me to get involved based on my interest in speaking.
I have gained confidence in my speaking abilities as of late, and I realized this would be a tremendous opportunity to have people in my own community hear my story. However, sometimes that motivation to spread awareness is coupled with overwhelming anxiety about how the audience will react to me and whether I will freeze and want to run off the stage as I did when I first performed in plays as a little boy.
So I did apply for the event and was accepted to try out last Saturday. AND I DIDN’T GO. I decided to push the interview off so that I would have more time to prepare. I have come to instantly know what I can and can’t handle. For many years I have agreed to every opportunity, primarily because I didn’t think I would have these opportunities later. This weekend I realized that it is OK to say “No,” or in this case “Not now” when I am feeling overwhelmed. I understand my difficulties with transitions and just accept that I can just be Kerry. And thankfully there will be other self-advocates out there giving TEDx talks and telling everyone what it is like to be on the spectrum—mine is not the only voice. There are other voices and they thankfully are growing louder each day.
It was a Sunday afternoon during my recent trip to New Jersey and I was spent. Understandably so; I'd given a keynote presentation at a conference in Tennessee on Friday, flown to Newark, and rose early on Saturday to serve as a bridesmaid in a family wedding. Fortunately, I had a game plan for survival, which I referred to as Operation Crash-Land. On Sunday, I resolved, I'd rest and do nothing. I'd stay in pajamas just as long as I liked. In pursuit of this mission, I spent a good portion of Sunday afternoon hiding in the guest room at my parents' house. Much as I wanted to stay hidden, though, I had to come out eventually. A family dinner was on the table, and my grandparents were visiting too.
Ordinarily, I treasure time spent with far-flung family members, but on this particular day, I could barely muster enthusiasm. After a highly social weekend, my introverted self longed for peace and quiet. The thought of one more conversation—even with a beloved person—was exhausting. The only thing that sounded remotely appealing was companionable silence—being with someone without having to say a single word. So when I saw my brother Willie lacing up his sneakers to walk the family dog, Chevy, I jumped up to join them. I'm not one for spur-of-the-moment decisions, but I seized the opportunity. Quality time with Willie, with no need for dialogue? Count me in.
Just as I'd hoped, Willie and I walked without words for 45 minutes. The experience proved soothing and restorative for both of us. Yet the walk also offered an unexpected gift: the opportunity to see how far Willie has come. Since I was far too tired to offer guidance and direction, I hung back and let my brother take the lead. As we took our first steps, I resolved not to speak unless I saw a genuine reason to do so. By keeping silence, I wanted to show Willie that I trusted him enough not to hover or micro-manage. Without words, I wanted to communicate. I wanted him to know that I wasn't there to instruct, him, but rather to witness his abilities.
It's all too easy for our family to focus on Willie's difficult behaviors, agitation, and aggressive episodes. But I believe that if he is to gain strength to deal with those things, he needs people who believe in him. He needs others who don't deny the reality of his challenges, even as they see his capability, competence, and giftedness.
Watching Willie guide Chevy, I remembered another time in which my perception of him had shifted. At the time, I'd just spent several months caring for adults with intellectual and developmental disabilities. Seeing Willie through the lens of my caregiving experience offered a valuable new perspective. I'd been spending my days helping individuals shower and brush their teeth, so I could appreciate how much Willie did for himself. In fact, I was blown away by my brother's (relative) independence. How had I not seen it before?
That Sunday, as we walked home through the fading light, my honest impression was that Willie has come a long way. Nowadays, he is quite capable of caring for Chevy on a walk. The only real contribution I made was to wave at people we passed, or say, “Oops, sorry!” if we had to squeeze by them on a narrow pathway. To be sure, Chevy didn't make it easy. He's a high-energy puppy, so he gave us plenty of excitement along the way. He wanted to pounce on every dog we passed, and at one point, he took off at a sprint after a well-hidden cat. (That was the second and last time I spoke aloud. I said, “I see, it's a cat!” to clue my brother in; from Willie's vantage point, he couldn't see what was driving Chevy crazy.) But even if I hadn't been there, even if I hadn't said a word, Willie would have been fine. He handled each minor crisis calmly.
When we arrived back at home, I told my brother the simple truth: “Willie, you did a great job. I'm proud of you.”
As my journey through adulthood continues, I am constantly becoming aware of new and unfamiliar responsibilities as they present themselves. As a case in point, a circumstance arose which made it necessary for me to directly participate in a personal legal matter. This required, for the first time, that I engage the services of an attorney on my own behalf.
Up to this point in my life, my parents have handled any and all of my legal concerns. As a result, I was unsure of how a meeting of this type would come together and what would be required of me. The scenario that kept playing out in my mind involved the lawyer speaking in pure “legalese.” I imagined him using complicated terminology which would be well above my ability to comprehend. I was also afraid that I would be unable to effectively articulate my needs and wishes. This left me feeling intimidated.
Prior to the meeting, however, I spoke with my parents about what I should expect and the documents that would be executed that day. My parents helped me to understand what the documents were, what they meant to me and my future, and how they would be addressed during the meeting. Thus when the time came to meet with the lawyer, I had a clearer understanding of the steps that would be carried out. However, I still felt nervous even though I knew I would have the support of my parents during the meeting. I was confident that the legal documents would be easy to work with, but I was still unsure of how I would interact with the lawyer. I knew that he was an acquaintance of my father’s, but I had never personally met him.
To my great surprise, the meeting went very well. The lawyer’s office was quite spacious: the walls were filled to the brim with bookshelves containing books which detailed state laws, courtroom etiquette, decades’ worth of old cases, and other legal matters. Sunlight streamed in from a nearby window, making the entire room seem homey—an unexpected but welcome feeling. The attorney himself was just as friendly as his conference room; we spoke a bit about our lives while we reviewed the documents’ details and my feelings of nervousness quickly disappeared. He went to great lengths to ensure that I understood everything and was satisfied that the documents reflected my needs and desires. In the end, there were no complications and the process was completed in a timely manner. I feel assured that both my future interests and I are fully protected. Furthermore, as a result of such a positive professional experience, I believe I have added a new member to my support team. As the events of my life continue to unfold, I am reminded that I need to be aware that there are still numerous experiences, situations, and obligations ahead of me. They will require my attention and, quite possibly, professional assistance. My first experience with an attorney has left me hopeful that I will be able to find any legal help I need as I require it.
On a trip to Arizona three years ago, my son Mickey asked to visit the airport gift shop. He rummaged through a display of stuffed animals. “Hey there little fella,” he said, clutching a small stuffed bear to his chest. For the next hour until it was time to board, he walked through the airport gripping his new toy.
For years therapists have urged us to encourage more “age-appropriate” interests. We have. But at 21, Mickey is still drawn to Sesame Street characters. His bed is piled with so many plush toys there’s no room to roll over. He sleeps with a large Sponge Bob pillow.
I’ve come to wonder if wanting him to be more age-appropriate says more about our comfort level than about Mickey’s development.
Professionals tell us he has a “spiky” profile: test scores show an uneven scatter of strengths and challenges. His interests are spiky too. He does have what would be considered age interests suitable to his age: he loves watching sports. He enjoys hanging out the mall, eating at the food court and buying t-shirts at Banana Republic (which he calls “The Gentleman’s Store.”) He wears Beats headphones to listen to music—Raffi as well as rock. We encourage his interest in championships, players, team rankings and game rules, which gives him conversational currency with peers.
But if carrying a small Sesame Street Grover beanie in his pocket makes him feel safe, why shouldn’t he? Don’t we all have our transitional objects, or habits and rituals that reassure? How many adults panic at the idea of leaving home without a smart phone? Why do we expect our children on the spectrum to be paragons of age-appropriate maturity, when we ourselves frequently choose age inappropriate activities or interests? One of my husband Marc’s favorite movies (sorry hon, I’m outing you here) is the animated Pixar flick “The Incredibles.”
Instead of focusing on having age appropriate interests, wouldn’t we all be better off focusing on teaching our kids the appropriate times and places to pursue those interests? Listening to Muppet music on an iPod with ear buds is fine; carrying a Muppets backpack is not. I don’t want anyone bullying him.
When Mickey was a toddler, he was evaluated by Dr. Stanley Greenspan, the architect of Floortime Therapy, a developmentally-based intervention that stresses following your child’s lead. Dr. Greenspan taught us to enter into Mickey’s interests. “Those passions are the window to your son’s emotional life,” he said.
Last night when I poked my head in his room, Mickey was engrossed with his iPad. “I’m watching Snoopy,” he told me. “He’s for everyone. Come see.”
I sat beside him. “Looks like Snoopy is doing his happy dance.”
“Yes!” he said. “I’m getting ready for my play date with Jake this weekend. Jake loves Snoopy.”
I shared that with Jake’s mother. “Aw,” she said. “I struggled for years to come to terms with him skipping down the halls and singing Barney songs.”
The bottom line is this: Mickey works hard all day to meet other people’s expectations of suitable behavior. If he wants to watch blooper reels from “Reading Rainbow” and outtakes from “The Muppets Movie” when he gets home, that’s fine. Why shouldn’t he seek out things that comfort or amuse him? We all do. Marc and I have watched so many “Seinfeld” reruns we could do a responsive reading of the dialogue. (Not that there’s anything wrong with that.)
It’s his leisure time, not ours. Mickey gets to choose. I respect his choices because I respect him. I’ve stopped caring if his interests don’t fit someone else’s idea of appropriate.
As long as they’re appropriate for him.
Since I wrote of Cameron’s postsecondary funding dilemma last week, not much progress has been made. My head still spins over what options are available, how much funding he will be eligible for, and exactly how much is reasonable to spend out of our own pocket. Is the return on investment of postsecondary education sufficient to offset the loss of those funds for long term lifespan support? As my husband is a fan of saying, “You can only spend money once.” What if we spend it one way, but Cameron ends up needing a different level of financial support later on down the road?
Everything being up in the air (still!) with Cameron’s next steps has given me pause to ponder what I’d consider an ideal scenario for him: continued academic development, the opportunity to live away from home and hone his independent living skills, access to a semi-structured social setting, and vocational development to aid him in being fully employed upon the program’s completion. It’s hard to prioritize the items in that list, as I see them all as equally important. The end goal is for Cameron to have the potential to maintain full-time employment and be able to live independently. I’d like for Cameron to quickly earn his way to independence from my support, as well as institutional supports. What will it take to get him there, and how much upfront investment is it worth?
Cameron made the familiar trip to visit his father this past weekend. Midweek last week, Cameron asked me if everything was still on for his trip. I assured him that everything was set, and asked him why he was worried.
“Well, you didn’t remind me to tell work I wouldn’t be there this weekend.”
“Did you tell them you wouldn’t be there?”
“Yes. I told them on Saturday.”
“Then why did I need to remind you?”
“You just always do.”
Case in point of why Cameron and I need an opportunity in which he can be more independent without my constant availability. These unintentional interventions of mine have apparently been something that Cameron has come to rely on.
I’m sure I could find a similar case in point for each of the items in my ideal scenario list. Maybe I need to come to grips with the fact that a pricey program that checks each item on the list isn’t the only way to address those items. Maybe, like the financial side, the content side is a lifespan issue. However alluring the one-stop-shopping appeal of two-to-four-year campus-based program is, perhaps there’s a more cost effective way to reach the same goals. There are job supports and internship programs to apply for, social groups to join, online and specialty community college courses to look into … The one component that comes to mind as being tricky to replicate without the pricey program is the independent living piece. We’ll keep plugging away though. Maybe relaxing a little might be in order. I thought I was going to get to do that when Cameron got accepted into a program … Oh well.
Over the last year or so I’ve talked to parents who have children that have been newly diagnosed with ASD. And as expected, many of them have questions and uncertainty about what the future holds for their child and for that matter, the family as a whole. While some preparation for the future is good, looking too far ahead can lead to a lot of unwanted and needless anxiety.
“How do I face this fear about what lies ahead for us?”
“How do I overcome my depression about my child being diagnosed with ASD?”
“Will my child ever be able to have quality of life?”
“Will my child ever be able to live on his own?”
“How will I know who I can or cannot trust to help?”
These are just a few of the questions I often hear.
One of the things that helped me the most when Cody was diagnosed was learning to take one day at a time as much as possible. I knew enough about autism at the time to know that one day could be very different from the next and major progress was not going to take place overnight. It was going to take a lot of hard work and dedication, and there would be many challenges along the way. But being afraid of them wasn’t going to accomplish anything. Facing them head-on was the only logical option for me.
Depression about Cody’s diagnosis was never really an obstacle for me. I didn’t feel like I had the time for it, for one thing. However, I was quickly frustrated with the lack of resources in our area. There were many phone calls and discussions with teachers and program administrators, and disputes with staff members regarding goals and appropriate curriculum. But in the long run, we have found ourselves winning the battle.
I also feel it is paramount for parents and caregivers to understand that, like all neurotypical people, each person with ASD is different from the next. Autism does not negate having a unique personality, ergo the need for individually-oriented goals and curricula. Recognizing Cody’s needs as an individual was critical for us in providing the right tools to help him progress and critical for Cody to be able to learn ways to add enrichment to his own life.
While there may be some interventions that work well right away, it is highly unlikely that everything will go off without a hitch. There should be an expectation among parents and caregivers that there will be much trial and error involved in the therapeutic and educational processes of meeting the individual needs of their child.
Accepting from the beginning that Cody may need assistance over lifespan was crucial in dealing with whatever challenges Cody’s autism threw our way. That doesn’t mean we relinquished our hope that one day Cody could become self-sufficient enough to lead a productive life. Even though he is now 27 years old and is a long way from reaching that goal, we have seen him make so much progress that we still believe that possibility may one day be a reality. He’s reached many milestones. He just didn’t do it in the same time frame as his neurotypical peers. But he did reach them.
Lastly, finding doctors, teachers, and therapists can be a trying experience. And trust issues are common among parents just embarking on this journey. I found that doing lots of research about medications, therapies and programs on my own gave me the proper information to ask service providers key questions and also the ammunition to stand my ground if there was anything with which I disagreed.
There is no magic pill that will cure ASD. There is no quick fix. That’s why Bill and I sought to focus on the small victories and rejoice in every one of them. Knowing what triggers a meltdown and which methods work best to minimize it empower us immensely. Making note of what motivates Cody and looking for new and different ways to teach him skills he needs to master has been challenging, but in the end we have learned so much. And we have been so richly blessed for it.
Whenever I share stories of my family's experience with Willie's aggressive and self-injurious behavior, I'm always concerned that the accounts will seem over the top to some, that people won't be able to relate to them. But each time I present, at least one person approaches me to say that they're grateful that I didn't hold back. Why? Because they understand. Because they've lived through it, too.
Last week, I gave the keynote speech at the TABS (Tennessee Adult Brothers and Sisters) conference. After I spoke, I met a young man who said, “Your story moved me … I could relate to almost every experience you described.” This young man's twin brother is on the spectrum, and their family has dealt with aggression and self-injury too. He told me, “Being an 18-year-old male, I don't thoroughly enjoy showing my emotions, but I was crying for the majority of your story.” He shared the things he loves about his twin: his humor, kindness, and intelligence. And he told me about the things he finds difficult to bear: “I've had three friends over to my house since I was 7 years old. I don't want to let people see the holes in our walls, or expose my twin or myself to unfair judgment.” I couldn't help but hug him and his sister; I wished I could stay and talk to them all night.
Still reeling from the emotions of the TABS event, I caught a flight to New Jersey so that I could serve as a bridesmaid in my cousin's wedding. The transition marked a move from public advocacy (giving talks, composing posts) to quieter, less-visible advocacy (sharing supper, going on walks, just living life). For me, the everyday tasks prove most challenging. It's relatively easy to speak and write about Willie; it's harder to be patient when he plays the same Youtube video over and over again. It's tougher to sit and listen when he practices pieces on the piano rather than scrolling through my news feed. (Guilty.) It's the little sacrifices, the small, unheralded acts of love that take the most effort.
The day after the TABS event, I danced with Willie at our cousin's wedding. He was wearing his big noise-canceling headphones to help drown out the blaring music. He'd occasionally smile, and occasionally make what I call his “fake freak out” face: his eyes open wide and shifted to the side; his mouth open, tongue falling to the left or right. It's bizarre, but I think I understand the motivation behind it: stress release. (After all, it's not so dissimilar from the face I make when I'm stressed out and no one else is looking.)
As we danced, the DJ played John Legend's “All of Me.” It's a song about romantic love, but it's also about acceptance. It's about welcoming someone as they are without trying to change them. In short, it's about everything Willie's still teaching me.
“You're crazy and I'm out of my mind / 'Cause all of me / Loves all of you / Love your curves and all your edges / Love your perfect imperfections …”
Our parents are dancing nearby; when Mom is close enough, she says, “I love that line best: ‘All your perfect imperfections.'” I smile and nod, not trusting myself to speak without weeping. I love that line too, because being Willie's sister means embracing paradox and contradiction and all that I cannot fully understand. I haven't said a word, but soon I'm crying anyway. I'm crying because I'm happy and I'm sad, because Willie will always be different and I will always love him.
The week that follows is filled with similar dualities: Willie's calm at home, but then he melts down at work. It seems like he'll be bored at his current day program forever, but then his case manager calls and mentions an exciting new day support possibility. Life with Willie is back and forth, up and down, and unpredictable as ever. But somehow, it's all right. I don't need to have all the answers. I just need to be able to dance with my brother and listen to words that I know to be true.
With April being Autism Awareness Month, everyone is getting into the spirit of helping out when it come to this cause. People are turning their Facebook pictures blue, putting blue lights outside their homes, and going to fundraisers for autism. The big question is what can you do after April is over? Autism does not stop at the end of April and start back up when the time rolls around. The new statistic out is that 1 in every 68 children has some form of ASD and has to live with this every day. I think it is great that so many people want to spread the awareness of Autism in the month of April, but there is so much more people can do after the month is over.
Working part-time as a bartender, I get the chance to meet a lot of interesting people. I am always asked what I do as a full-time job. When I say I work at an autism center as a Supportive Employment Manager, people are always amazed and commend me for having this job. Questions come up about my job, my individuals, and the staff that I have on my caseload. But the best question is: “What can I do to help?” I always say, “Just spend some time with someone with autism and see how they live.” Some of the individuals I have on my caseload even surprise me as to some of the interests they have or some of the things they can do. I have one individual who knows something interesting about any date in history. Another individual will sit for hours with me and talk about sports as if he were an ESPN sportscaster. One nonverbal individual is able to pick up any skill just by showing him once, and is able to speak to me through an iPad.
One of the requirements of my job is going to work sites and speaking with managers about the progress that the individuals on my caseload are making. Even some of the managers I speak to are amazed by what the individuals can do. Some of the managers are afraid to give the individuals new tasks. I tell the managers “Just show them what you need them to do, and give instructions to the staff.” I enjoy the managers’ later surprise at how well the individuals did completing these tasks. After the first time of trying this, some of the managers do not even wait for me to come in and ask me if the individual can do a new task. Sometimes I will walk into a jobsite and see the individual already doing a new task and the manager says, “I just wanted to try this and see if they could do it.”
Even though April is Autism Awareness Month and I love seeing everyone’s enthusiasm for helping, the best thing to do after April is to volunteer your time with someone with autism. Who knows, you may be able to teach them a new life skill or job skill that could help them gain more independence. They may also be able to teach you something new. I know I have learned so much after working with the individuals I have.
I was recently asked to host a fundraiser for a nonprofit organization that provides employment services for adults with mental illness, addiction or autism. I had never heard of the group, yet they are more than 50 years old and have offices and a campus less than five miles from my home in Northern Virginia.
I did some research and agreed to host the Kentucky Derby-themed fundraiser on May 3, not coincidentally Kentucky Derby Day. But I wanted to get a better idea of what they do, so I accepted an invitation to tour the campus and talk with the staff.
Psychiatric Rehabilitative Services (PRS) started in 1963 in the basement of a church, providing social services to about a dozen recently discharged patients with mental illness. It now serves more than 900 clients living with a variety of diagnoses, offering an array of training and support services designed to help clients find and keep employment and independent living arrangements. Funding comes from government, foundation and corporate grants, and private donations. Some services have been paid for by Social Security benefits of individual clients, though tightening eligibility requirements are changing that. PRS is stepping up private fundraising to make up some of the lost funding, and some clients privately pay for their services. Hence, the Derby fundraiser.
Increasingly those clients are on the autism spectrum. A few years ago, staff members said, they were seeing a spike in the number of ASD client referrals. The needs of the autism community were similar, yet somewhat different, from those of clients with mental illness or addictions. So PRS added autism expertise to its staff. Last year, almost a quarter of PRS clients were on the spectrum. PRS has been told to brace for significant increases in the number of adults with ASD needing services in the coming years. If most people on the spectrum are under 18, and the numbers are still increasing (one in 68 children, according to the latest CDC reports), that explosion is coming, and not too far off. And there aren’t many, or at least not enough, agencies like PRS gearing up for the onslaught.
Wendy Gradison, PRS CEO, said she believes her company is the only non-profit in Virginia offering the kind of comprehensive supports that PRS provides. While clientele is growing, public funding sources are declining. With growing numbers of kids on the spectrum graduating from high school, “we don’t want them graduating to the couch,” Gradison said. While PRS doesn’t do specific job training, they help young adults with a “person-centered care model” that plays to their individual skills and abilities and challenges. They train clients in the skills needed to apply and interview for jobs, and they follow up with behavioral supports to help adults with autism maintain employment. The goal isn’t sheltered-workshop jobs, but competitive employment in local businesses and full participation in the community.
Intensive personalized services also include help finding housing in the community and developing the skills needed for independent living, like grocery shopping, cooking and cleaning.
In 2010, PRS launched a Recovery Academy on two campuses in Northern Virginia, offering a curriculum-based day program to help clients move into jobs, volunteering or higher education. Classes range from computer skills to yoga. There is an emphasis on health and well-being. Thanks to a community donation, the campus has a new work-out room with cardio and weight-training equipment. The Academy’s restaurant management students operate a commercial-grade kitchen, serving lunch five days a week.
PRS boasts that 67 percent of its employment services clients were actively employed last year, more than twice the national average for the populations it serves. And 89 percent were employed for at least 12 months. All of the clients in the community supports and housing services maintained their housing and avoided eviction in the most recent reporting year. And PRS has been named one of the 50 best non-profits to work for in the U.S.
That’s a lot of success. PRS is on a winning streak, you might say. But they’re in it for the long haul, and the race is getting increasingly challenging.
I’m donning my Derby hat to help PRS get its clients over the finish line! (Feel free to groan at the tortured horserace metaphor). We just need to clone them. One in 68 kids is on the spectrum now.
If you’ve ever read a column I’ve written before, you probably know that I spend a great deal of time trying to figure out where my son will go and what he will do after he graduates from high school this June. Figuring this out with Cameron has been my full time occupation … my life’s work … for at least the past 18 months. One lesson I’ve learned over and over again is that it’s not enough to just have a Plan B. I’ll probably be on Plan X.2.b by the time all is said and done.
Cameron has applied to three postsecondary programs, each of which is based on a college campus at least 200 miles away from home. The “away from home” part is a key component to what we’ve been looking for. It’s crucial that Cameron learn how to navigate the world without me stepping in and inadvertently bailing him out at the first sign of struggle. I take pride in the fact that I’ve made a conscious effort to not overprotect Cameron, and give him the freedom he needs, but sometimes a mom’s gotta be a mom, and there’s nothing you can do to stop it. Not having constant access to my well-intentioned help will be a big step towards Cameron’s independence.
The first program Cameron applied to was my favorite. It was by far the least expensive, in the same city as Cameron’s father so he would have local support, and the program was fully integrated with the university’s campus. Students in the program audited credit classes and lived in the dorm alongside non-program students. Not surprisingly, there were far more applicants than spots available, and Cameron was not offered a spot. If I’m honest, the program probably didn’t offer enough support for Cameron, so in hindsight, this was not the best fit for him.
The second program he applied to was established more than 30 years ago and is on a small university campus. The cost is more than twice that of the first program. The students are integrated with the main campus, but not to the full extent of the first program. So it’s more supportive, but with access to the general population on campus. I liked the urban setting and the ease of nearby public transportation. It seemed like a place that Cameron would easily adapt to. Unfortunately, Cameron’s achievement scores were deemed too high, and it was suggested that he would not be appropriately challenged by the program.
The third program is very similar to the second program. The major difference is the setting. It’s on a campus, but the only permanent inhabitants of the campus are the program participants. And the campus is in a secluded suburban setting. It reminds me of a boarding school version of Cameron’s current school. This lack of inclusive setting was a big concern of mine. But guess what? That concern quickly faded when I realized this was the only bird in the hand we had.
So now we begin the process of figuring out how we pay for this program. Almost since the beginning of the search, I’ve been communicating with the Rehabilitation Services Administration (RSA) here in DC. Postsecondary education is something that Cameron qualifies for based on his classification within the agency. I’ve been in contact with Camron’s representative and she has given me guidance on which programs are established vendors, simplifying the funding process. (Programs Two and Three are established vendors. Program One is not.) When Cameron got the acceptance letter into Program Three, I thought funding approval would just be administrative formalities. But instead I have been informed that the program of choice is now a fourth program, whose application deadline was in January. Program Two and Three are no longer covered as before. There would be a little bit of money from RSA, but more than half of the really expensive tuition would now be up to us.
So now I’m left asking myself, “Is it worth it?” Can I justify spending the kind of money that will be required for this three-year program? The same amount of money would buy Cameron a nice condo somewhere. That may sound tongue in cheek, but it’s really not. Cameron’s needs for support will extend beyond the three-year-period of the program that has offered him a spot. Upon completion of this program, it would probably be considered very fortunate if Cameron had a full-time minimum wage job. Would Cameron be better off if we used the money for a three-year postsecondary program to support him for longer than three years? And if we do decide to skip the postsecondary program, what exactly will Cameron be doing come fall? Like I said, my life’s work is figuring out what’s next for Cameron. Just when I thought the job was done, it begins anew.
I wanted to take some time in my column this week to commend the job being done by the Wall Street Journal in covering the topic of employment and autism. A few years ago I started receiving Google Alerts on the topic of autism. This has given me the opportunity to get an email every morning with news and feature stories that are focused primarily on autism. One of the stories from the Wall Street Journal that really resonated was the recent “How Autism Can Help You Land a Job.”
I’m a statistic nerd and so I collect data to use to make my case for developing employment opportunities for those on the spectrum. The WSJ article notes that, “…according to disability experts … 85% of adults with autism are estimated to be unemployed.” It goes on to reference a study published last year in the Journal of the American Academy of Child and Adolescent Psychiatry which indicates that only half of young autistic adults between the ages of 21 and 25 years old have ever held a paid job outside the home.
In addition, the article looks at how autism can be used as an asset if these companies play up to the interests of those individuals. The story goes on to discuss companies that are advocating for adults with autism in the workplace, such as German-based software company SAP, which has piloted programs in Germany, Ireland, India and at four of their offices in the United States. SAP’s goal is to make one percent of their workforce consist of adults with autism by 2020, because of the unique assets these individuals bring to the workplace.
It also provides an example of a 29-year-old man with Asperger’s syndrome named Patrick Brophy who was hired by SAP last July. According to the article, Brophy holds an undergraduate degree in Computer Science and a Master’s degree in Multimedia Systems which include website development and editing. Brophy was looking for a full-time job for several years but had difficulty with interviewing. SAP looked past that and saw his skills.
Brophy’s story reminded me a great deal of my own. We both received Master’s degrees, we both are employed full-time, and we both have interests that help us succeed when given the opportunity.
Another WSJ article I would recommend is, “Training Program Helps Students with Autism Land Jobs.”
I’m a firm believer that we need publications such as The Wall Street Journal to emphasize these types of stories and encourage others to do the same. The Centers for Disease Control recently came out with new autism prevalence numbers that indicate 1 in 68 children in the U.S. are diagnosed with autism. I worry that stories on children with autism will dominate these conversations for the entire month and that adult issues will be forgotten.
While we focus on the CDC statistic, I hope that other numbers—such as the 1 in 500,000 children with autism who will reach adulthood within the next decade—will share the media stage. This is necessary because as autistic children age, programs and services must become available to follow them throughout lifespan.
As we shine the Light on Autism for Autism Awareness Month let’s hope each April in the future the light will become brighter and brighter with stories of successful employment of adults on the spectrum.
One of the reasons I love spending time with Willie is his refreshing lack of pretense. I'm not good at polite deception, and neither is my brother. For example, Willie doesn't pretend to like foods that he dislikes. That is, he doesn't lie effectively enough to be believed; he'll take a bite of a dish and force himself to say, “Yes, I like it!” with an obvious grimace. He knows the socially correct response, he just isn't able to match his untrue words with fake facial expressions. Come to think of it, I have the same problem. For my brother and me, our faces always give us away.
Likewise, when I call my family, Willie usually stays on the line for a minute or less, then says, “Goodbye Caroline!” His tone is bright and chipper, yet distinctly final. The implicit message is: We're done talking now! I have videos to watch, so I'm hanging up! For Willie, a small amount of time suffices, and a little goes a long way. It's a little abrupt, sure, but in a world of pleasantries and platitudes, Willie's honesty is bracing.
For example, here's a social convention that drives me crazy. Often, when I run into a friend, I'll greet her by saying, “Hi! Good to see you! How are you?”
She will invariably chirp back, “Good! How are you?”
I will invariably reply, “Good!” And unless I remind myself not to, I'll probably let the same question slip out again: “How are you?”
These questions have the potential to run in an endless loop. It's as though there's an unwritten rule that we have to get the first “ask” out of the way as quickly as possible. The other person must reply that they are well. Only at the second ask does the possibility for an honest answer arise.
I understand that this is just a social ritual, something we do to set ourselves at ease. But when I participate in it, I get the feeling that I'm doing a dance at which I have no natural aptitude. I feel like a ballerina trying to do hip hop … and I know from experience just how awkward that can be. (It doesn't work in the movies, and it really doesn't work in real life. At least, not in my real life.)
When I pose this question, I also get the feeling that—if I may mix metaphors—I'm tapping at the window of a friend's house, trying to glimpse the person inside. And if she says, “Good!” a second time, I feel as though the curtains have been pulled politely but firmly shut. Translation: “While it's sort of nice that you want to hear about my actual emotional state, I feel the need to hold you at arm's length. Sorry, we're not gonna go there.”
It's frustrating, especially with people I consider real friends. When I get that second “Good!” I want to stomp my feet and wave my arms and say, “Don't you know that you can skip the polite answer with me? I want to know you, not this cardboard persona! I'd rather hear you say, ‘You know, I'm exhausted and I'd really rather go home and take a nap than make small talk with you,' than, 'I'm good!'”
Yet I confess: I've given many a second “I'm good!” myself. Even though I try not to, I can't help myself; I mirror what I see and hear. It takes tenacity and courage to break the cycle, to slow down and tell the truth. It takes strength to be as honest as my brother is, naturally. To be sure, I need to use discernment; it's unwise to let just anyone see into my emotional “house.” That said, I'm resisting the conditioned response. I'm doing so not because I want to be original, but because I want to be real. Or at least, a little closer to real. Because that's the best I can do, most days. Total transparency? No; the prospect of such vulnerability is terrifying. But opening the curtains a few inches more, letting some light in? That's realistic. And that's exactly what Willie is teaching me do, just by being himself.
There is an old stereotype associated with people on the autism spectrum which states that we lack feelings or, more specifically, have no empathy. I cannot speak directly for others, but as for me, I can say that I do feel empathy. I am far from the cold, heartless robot some typically associate with people on the spectrum.
To me, being empathetic means understanding others’ feelings and viewpoints and being willing and able to help whenever the cause arises. I know I do this, and I believe just about everyone has this capacity within them. I also feel the world would be a lot better off if people allowed a more caring nature to guide them.
I have always had empathy, but the challenges presented by my inability to correctly interpret other people’s emotional states on a consistent basis make it hard, at times, for me to recognize when they are in distress. When someone directly expresses their feelings to me or I come to understand the problem, my empathy naturally shines through. As I have grown older and learned more about the world, I have also become increasingly aware of the need to be more empathetic on a much larger scale and the role I can play by donating my time and money to help others. Furthermore, I believe that showing people you care does not always require a tremendous amount of time and energy. It can be as simple as fulfilling the old adage, “See a need, fill a need.”
For example, recently, my family and I were having lunch in a restaurant when I experienced such a moment. I heard a very young baby crying from a nearby table, and found myself immediately concerned. I asked my mother what could possibly be wrong, and she replied that the baby might just need some attention. The mother of the young baby, overhearing our conversation, indicated that she was fine. I was much relieved. During our lunch, the mother brought the baby over for a short visit and thanked me for my concern. The most significant aspect of this situation to me is that I recognized a possible problem and was willing to reach out to others.
Even this very column helps me to serve in an empathetic capacity. I have received messages from readers and have met people who have described their real life situations to me and ways my columns have helped or inspired them. I do understand many of the circumstances they find themselves in and what they are going through because I have experienced some of the same scenarios they have and can identify with them. I have also shared many of the same frustrations and know what it is like to hit a metaphorical wall.
Caring about others gives me great satisfaction, and I am glad to be able to use my compassion to do some amazing things. I think we on the spectrum know that we can and do use our empathy to make good changes and leave positive impacts on the world around us; I am living proof of this.
She wouldn’t let go.
It had already been a Plan B day for me. I woke up to the sound of the dog retching. The disposal had clogged the day before, causing the dishwasher to flood my kitchen that morning. And my sitter called in to let me know that the 24-hour bug she thought she had was more like a 48-hour one so she couldn’t help me.
But by the time Madison arrived, I was ready. We were set to celebrate her 22nd birthday thanks to my longtime friend, Al, who single-handedly unclogged my disposal, fixed the dishwasher, and volunteered to fill in for my absent sitter.
The presents were wrapped. The table set. The pizza was on the way as well as Madison’s dad, step-mom, and brother. And the ice cream cake was thawing per instructions so it would be easy to cut.
Madison arrived accompanied by Al and also Pat, our family caregiver who’s been with me for over 20 years. Madison was happy and singing, but after giving me a quick kiss and a cursory hug, she made a beeline to my wrapping paper drawer where she fetched a large gift bag, per tradition.
“She’s going to the basement,” I hollered to Pat who was still bringing in leftover snacks from the van. I wheeled over to the top of the steps, parking my wheelchair so I could see. “I think she’s just getting her tapes.”
Usually she just grabs a few tapes, “shopping” in the basement bins of VCR tapes I keep for her. This year she took five tapes, including Barney’s “Families are Special,” and Mary Kate and Ashley’s, “The Case of the U.S. Space Camp Mission.” But one year, she tried to take the TV—off the wall.
She came bounding back up the steps before Pat made it in, breezing past me. “Now she’s going upstairs, Pat. Probably just getting Barney.”
Again Madison came down quickly, then plopped herself at the kitchen table and carefully placed her bag now filled with Barney and tapes on the table. After a few slices of pizza, she grabbed the bag and stood up, looking toward the door.
“Not time yet, Missy,” I said to her, touching her arm. We were used to short visits—staying too long or including too many activities would often provoke upsets. But it was her birthday. Surely I could stall her a little longer.
And the battle of wills began.
“Look at me,” I said to her. “Time for presents.” And we rifled through the presents as she still clung to the bag.
“Say, ‘Thank you, Cindy,’” I prompted, paused, and waited as she finally repeated the words. “Say, ‘Thank you, Daddy. Thank you, Zander.’” I coached and she complied.
She stood up again.
“But Madison, you have cake, a yummy ice cream cake.” It was actually a frozen yogurt cake featuring Madison’s favorite snack flavors, peanut butter and graham cracker, that had been artfully crafted by my son’s girlfriend. She’d garnished it with a new treat we decided to try, Reese’s peanut butter cups.
Madison sat down again, still clutching the bag with one hand while she began picking off the peanut butter cups with her other.
“Wow, Madison, you like it! Good job. Now let’s try the cake.”
But she couldn’t. Normally she uses two hands to eat—one to hold the plate and one to use a utensil. But she wouldn’t let go of the bag.
“Alright then, Madison. Mommy’s going to feed you. I think you will like it.”
And spoonful by spoonful, she devoured the cake slice, still holding fast to her bag. Cindy offered to take pictures, snapping away while I fed my 22-year-old daughter.
Madison stood up again. This time there was no stopping her.
“Give Mommy kiss.” And she managed to plant one on my cheek with a one-handed hug.
She’d reached her limit and I guess I’d reached mine. I had to let her go. After a few more one-handed goodbye hugs, she left, Al and Pat driving her back to her residential home.
We didn’t get to sing Happy Birthday. We didn’t get to light any candles. We didn’t get to change her pizza streaked shirt nor even wipe the sauce off her mouth.
But we got some priceless family pics. And I guess we celebrated Madison-style—holding on tight to the time we had.
This winter has been particularly rotten. Cameron's school has somewhere in the region of 11 snow days to make up. (At some point, you just stop counting.) With snow still falling in the DC area into late March, the best decision I've made of late was to book a long weekend in Puerto Rico. Cameron's not a fan of the beach, so this trip was planned to coincide with his weekend visit with his father.
For me, travel and stress are synonymous. I develop acute packing anxiety 24 hours before departure. I run around in circles trying to remember everything, leaving notes for pet sitters, getting medical documentation for my daughter, not to mention the suitcase contents. No matter how much time I give myself, I inevitably end up running late, and have a knot in my stomach until I'm safely on the plane. I used to get this way even when Cameron was traveling without me, but I have mostly overcome stressing about his travel. (Except when I'm the one stuck in traffic, trying to get him to the airport on time.)
For our weekend getaway and Cameron's visit to his dad's, everyone was flying out the same day, within 30 minutes of each other. We were flying out of Washington Dulles International Airport, as opposed to our usual Reagan National. The difference in airports is vast. At Reagan, you can pretty much go from parking lot to plane in 20 minutes or less. Dulles involves longer security lines, People Movers and/or trains to get to gates, and it's a haul just getting inside from the parking lot. So, we ended up cutting it a little close this time. Again. Cameron had the most to lose, as his flight was first out. And we were getting on our own flight. So what if Cameron missed his, and we made ours, and he was stranded? The amazing thing about this doomsday scenario, is that it didn't occur to me until after I had received a text from Cameron that he had made it to the gate.
The fact that I didn't think through problem-solving for Cameron ahead of time says a lot. Somewhere along the line, I have developed confidence in Cameron being able to sort things out. As we were exiting security, my husband started giving Cameron directions to his B gate and the train he needed to take. I was thinking, "Hello? He's got this! Why are you being such a Mother Hen?" Talk about role reversal! Usually my husband is the one saying, "Let him figure it out." It was such a great feeling to be the one letting go for a change, and having confidence in Cameron's capabilities. So much confidence that I scheduled our return the day after Cameron's. Getting himself home from the airport, and fending for himself for 24 hours until we return? He's got this, no problem. And if there is a problem, it's a great opportunity for him to hone his problem-solving skills. (And my stress management skills.)
Cody has had an interest in the opposite sex for quite a long time now. But the other day Bill posed a question that made my heart skip a beat. He said, “What if Cody wanted to get in married someday?
While there have been many neurotypical young ladies that have clearly liked what they saw when they laid eyes on Cody for the first time, once they talked to him for a bit and encountered the language barriers and what they saw as odd behaviors, they realized he was very different from them and their attraction toward him dissolved pretty quickly. So it’s hard for me to imagine a neurotypical girl that would maintain a long-term romantic interest in him. However, there are many special needs couples who date and even marry. And we are seeing Cody develop a more serious interest in women.
There are several female clients at his day program toward whom he gravitates more so than others. And the signs are there to suggest that he may be developing a special fondness for one of them. So I can see how marriage could be among his aspirations, someday. But the plethora of factors that have to be considered seems almost overwhelming to me.
For starters, I still have to prompt Cody in a step-by-step fashion when he takes a shower, not to mention making medical, financial and other day-to-day decisions that are in his best interest. These young women I spoke of also need assistance in these matters. And given that Bill and I are as protective of Cody as we are, we would want to have a supervisory role in this venture. We would want them to live with us until we could be sure they would have proper support if they were to live on their own. But how would the girl’s parents or guardians feel about that?
A bigger question is how would this affect our guardianship of Cody? Would we then also assume guardianship of Cody’s wife as well? I tried to do some research on this question but all I have found thus far is how disability benefits can be penalized, how advanced directives need to be put in place right away and how cash gifts from families can have a derogatory effect on a couple’s disability income. So it looks like Bill and I will need to consult with our attorney to learn the answers.
Then there’s the subject of whether or not Cody and his would-be bride would have an interest in consummating their marriage. Bill and I have not discussed sex at great length with Cody. He hasn’t asked that many questions aside from what the animals on the National Geographic Channel were doing. Cody does have natural, biological urges the same way neurotypical males do, however. We have had to explain to him that certain things need to be done in private only. It’s not something others need to see, hear or know about. But what if the young lady Cody marries is more sexually sophisticated than he is? How do we go about explaining it to Cody and determining if he comprehends and is on board with it? While I believe it is the understanding of love—and not the understanding of sex—that determines a person’s readiness for marriage, in most cases they go hand in hand, so it’s still a subject that would have to be addressed. And with that comes the issue of birth control.
Then do we as parents of the groom, who have hypothetically assumed guardianship of both Cody and the girl he marries, also have the responsibility to make sure that all things are in order for both parties in the event of our death or does some of that responsibility still fall to this young lady’s family? Research is in order on the subject of Special Needs Trusts. And the list of considerations goes on and on.
There are those who may feel I’m putting the cart before the horse but I don’t think so. Caring for individuals with special needs whether autism, intellectual disability, or physical limitations requires a lot of thought and advanced planning. Seeing Cody’s interest in the opposite sex become more prominent means that it’s time for us to investigate the matters of love and marriage for special needs individuals now, so we can be prepared. We want to be responsible parents and guardians but we also want Cody to be happy as well.
As I stand making small talk with the other volunteers, I can't help but steal glances at the front entrance. I'm at the monthly special needs respite evening, waiting for “my” kids to arrive. Due to various illnesses, cancellations, and scheduling conflicts, we haven't seen each other since November, and I'm concerned that they won't remember me, that we'll have to start building bonds of trust all over again. Yet I needn't have worried; Darcy* comes right up and wraps her arms around my midsection. “Hi! I'm sorry we couldn't be here last time!” she says, already taking responsibility. I reassure her, “Oh, no problem! I missed you, but of course I understand. I'm just happy you're here now.”
By contrast, David* plays it cool; when I greet him, he doesn't meet my eyes for more than an instant, and by then he's already off and running toward the basketball hoops. This sets the tone for the evening. He's on the run almost the entire time, flashing his trademark mischievous smile as he runs up the stairs, out to the doors, everywhere he knows he's not supposed to go. Keeping up with him is even more of a challenge than usual, and I'm thankful for my athletic clothes and running shoes. But chasing after David comes with a silver lining in that it shows me how far we've come. Though both twins vie for my attention (“Watch me! Help me! Look! Are you watching?!”), I notice that both David and Darcy run off with other kids, separating from one another for longer periods of time. This represents a major change from their first respite night together, in which they clung to one another like barnacles. This time, I perceive a new ease and maturity. They're still in sync, but they're more relaxed about being apart. Seeing that makes me feel great, because I know that both kids have to feel safe and secure in order to go their separate ways.
Out on the playground, they call out, “On your mark, get set, GO!” and race, over and over. I'm usually the only grownup who joins them in their sprints, and I always let them win. As I jog, I don't care about looking silly or undignified; their smiles and hugs are my reward. Since these kids are racing junkies, running with them is the best way to show I care. All the while, I attempt to take photographs, but I see the futility of that enterprise. The kids' expressions are priceless, but they're moving far too fast and often to be captured.
One would think that David would have burned off enough energy on the playground, but no … he keeps me on my toes in every subsequent activity. The most challenging moment comes when he leaps up onto the gym's stage, picking up microphones and pounding on keyboards. These are expensive pieces of equipment, not toys, so I know I need to intervene. As I kneel beside him, I strive to strike a balance between being firm and being kind. I want to be his buddy, but I also want him to respect my authority. “David, no,” I say, with quiet conviction. “We cannot play with these.” And wonder of wonders, he listens. Perhaps it's because he knows I mean it, and perhaps it's because I reserve my “No” for situations in which it's truly necessary. Either way, I'm relieved. But a part of me wonders: Will he still like being with me if I set limits?
At the end of the night, I receive an answer. As I'm walking through the dark parking lot on the way to my car, the interior light from Darcy and David's parked van illumines my face. David spots me and calls out, “Bye bye!”
“Bye! Good night!” I say. We've already parted well, so what he does next astonishes me: he jumps out and gives me a spontaneous hug. “I'll miss you, miss you,” he says.
My jaw drops. The kid with whom I've been setting limits for the past three hours will miss me? There's nothing to do but smile at him and tell the truth: “David, I'll miss you too.”
This month, my daughter celebrated her 18th birthday, which left me with a sense of accomplishment that I had managed to raise both of my children to adulthood—more successfully than not, I might add! During the course of the celebration, it was brought to my attention that my son’s future plans do not include children. He has come to this decision due in large part to his family history of autism spectrum disorders. For me, this raises several issues. First, of course, I worry that if he holds fast to this, I don’t get grandchildren. But one of the personal bigger questions becomes, had I known then what I know now … would I have made a similar choice?
Here’s what I know—I have never had one minute of regret over having had my children, even once I knew that I was the perfect argument in favor of a genetic link in autism. What I do regret, however—and have regretted since the day I was diagnosed—was that I had passed along to both of my children so much of what made my growing up (not to mention, being a grown up) so difficult. I wanted them both to grow up feeling comfortable in their own skins. I hoped they would make friends easily and feel at ease when interacting with their peers. I wanted them to have a natural self-confidence I saw in others but could never quite access in my own head. I wanted them to have interests that fell in line with what their classmates and neighborhood kids were interested in, which would make forming those friendships easier. I wanted for them what any parent would want for their children, but that wanting came from a place of longing too—I wanted them to have the tools that would have made their childhoods simple and carefree. Isn’t that what every child deserves? I wanted them to have what I didn’t. I didn’t want them to be natural targets for bullies. I wanted them to know they had every right to stick up for themselves, and the right to expect that others would be in their corner to stick up for them, too. I wanted them to feel comfortable interacting with members of the opposite sex, and not carry that social awkwardness with them well into adulthood where it would become easier to access artificial confidence by way of what we’ll call unhealthy coping strategies.
So not surprisingly, I wanted to jump in and immediately set about talking my son out of this decision. The rational voice in my head reminded me that the timing was bad, and since he’s not at the point where this is a decision he has to make, there will come a point where the timing is better and we can have a conversation … perhaps a series of conversations. I can tell him what I know without question—that I do not regret having him and his sister even though I passed my autism on to them, and along with the autism came all of those hardships in a variety of shapes and sizes to permeate their childhoods as it did my own. But here’s what he gets that I didn’t have, what his sister gets too, what all of these children and adolescents who are transitioning to adulthood with the knowledge of their place on the spectrum get: Knowledge. As I said many columns ago, knowledge is power. I do not think that my children need to fear having a child of their own with an autism spectrum disorder, because they are incredibly smart, and more importantly, incredibly empathetic young adults who will make amazing parents should they someday make that choice. Perhaps my “job,”—now that I have, after all, successfully raised them to adulthood—is to look for those teachable moments to point out to them both that each and every one of those wishes that I had for them would have been so much more attainable had I gone into the whole parenting thing understanding how my brain worked. That’s the advantage they have today that I didn’t have, and that’s just one of the ways I still believe that when it comes to the autism spectrum, knowledge is power.
Reilly’s spring break, which began ominously with a stomach bug and a St. Patrick’s Day blizzard, ended with a hopeful road trip and potentially (fingers tightly crossed) new school.
He arrived home Friday night, and we awoke early Saturday morning to the sound of vomiting coming from his bathroom. Visions of a week of stomach plague, passing from Reilly to Mom to Dad, danced in my head. It did not portend well.
Dad got up to check on Reilly, who soon went back to bed, from which he participated in a video teleconference for his business management class. It was a make-up session, necessary because of the number of snow days his Long Island school has had. Props to Reilly for participating in a make-up class teleconference on his first day of spring break while sick!
And my fears for the week weren’t realized, thank goodness. By that night, Reilly was recovered and eating dinner with us. His stomach bug didn’t spread, and we had a good, productive week. He got to see some friends, had a very good physical check-up and a positive visit to a college he’s applying to for next year.
Nine inches of snow on Monday almost threatened to cancel Reilly’s lab test appointment, which would have meant the results wouldn’t have been back in time for his physical on Thursday. But the doctors’ office opened by late morning, blood was drawn and the results were there when we saw the doctor. The news was all very good. Reilly’s doctor was impressed with the apparent improvements Reilly has made in his diet and lifestyle. Though he has refused to take the vitamin and nutrition supplements the doctor recommended last year, his blood tests showed marked improvement in cholesterol and blood sugar, particularly. Reilly has cut back on soda, seems to be eating better, and is visiting the gym in the evenings with two of his friends at school.
After his physical, we headed to the airport for a trip to Connecticut to visit a four-year college Reilly is interested in. It’s a nice little school with a great learning disabilities support program, and a sports management major that seems right up Reilly’s alley. We met with the admissions office, the LD support office, and the head of the sports management department. Reilly was engaged the entire time, though he seemed to rely on me to do his talking. I had to stop myself from answering for him, not easy for either of us! We left feeling encouraged and hopeful that Reilly could succeed in that environment.
He would only need to take 12 credits to be considered full-time. With supports in place, that might be manageable for Reilly. Taking summer classes could help him stay on track to graduate. And my concerns about his potential isolation at a four-year college were somewhat assuaged by our visit. Kids with learning disabilities, mild autism spectrum disorder and ADD make up about 20 percent of the school’s enrollment. The LD center provides regular opportunities for group activities and recreation, and the school works hard to integrate freshmen into campus life. Reilly’s interest in sports (watching, if not participating) would give him a lot to do on campus.
Reilly had decided that he would return to NYIT’s VIP program next year and “graduate” with his friends. (The Vocational Independence Program is a three-year, non-degree program.) But now he seems enthusiastic about transferring to a degree program, and is already thinking about how he can maintain his VIP friendships from afar.
Now we just have to get accepted. Stay tuned.
Happy Birthday, Cameron! Nineteen years old. Where has the time gone? In a few short months you will have earned your high school diploma and will be preparing for a new phase in life. I hope you understand what a monumental accomplishment this is. I distinctly remember considering moving you to a new school for your high school years, and eliminating any school that only offered a diploma as its only exit point. I really didn’t think you’d be able to earn a high school diploma. But you’ve proven me wrong. Not only that, I’ve seen very little other than A’s on your report card for quite some time now. I’m sorry I ever doubted your capabilities and your hard work ethic.
Speaking of work ethic, I am so proud of how you have taken to the working world. You have proven yourself to be a reliable and enthusiastic employee. When you first shared your dream of owning a pizza restaurant all those years ago, I thought for sure that dream would fade after spending hours washing dishes in a commercial kitchen. And again, you proved me wrong. You love working, and would never dream of shirking your responsibilities. Even when your foot was broken in your bike accident, you were raring to get back to work. I don’t doubt that one day you will reach your dream of owning your own restaurant. You’re willing to learn and willing to work. That can’t be said of everyone, but it definitely can be said of you.
As we look at the next opportunity for you, ideally in a postsecondary placement, I know that your independence will serve you well. Your pride is evident when it comes to your ability to handle yourself without me hanging over your shoulder. Moving away from home will be a big learning experience. And I won’t be surprised if I am the one that ends up doing most of the learning. It’s so hard for me not to speak for you and not do for you. You and I have always had this unspoken language between us, and I’ve always felt like part of my job as your mother is to understand you better than anyone else. It’s nearly impossible for me to sit by and do nothing when language fails you in a given situation. I want to speak for you and explain your feelings. But that’s not my job anymore. At least, it’s not my full-time job anymore. You do just fine when I keep my own mouth shut, but I’m afraid I’m still learning the art of silence. But know that if you ever do need me to speak up for you, I will do so in a skinny minute.
I have many fond memories of your childhood, but one of my fondest was when you were just 4 years old. It was a particularly dark time for me as a single mom discovering that you were going to have some significant challenges in school. We were doing chalk drawings on the driveway, and you said, “Draw Mommy.” After I obliged, you said, “Draw Mommy sad.” As I added teardrops to the stick figure’s face, you bent down and patted those tear drops on the driveway, and said, “Oh … Poor Mommy.”
I’m afraid we may well need to “Draw Mommy sad” again on the day you leave for your next adventure. But the sadness is purely selfish, for I will be missing you terribly, but the pride I have in you will soon dry the tears. You’re a fine young man, Cameron. Any part I had in who you are is the greatest compliment I could ask for. Happy Birthday!
Some may say it’s the luck of the Irish, but March has been a VERY lucky month for me. For the past three weekends I’ve been able to go out and enjoy some down time with friends at parties. This type of thing seems to rarely happen anymore. Between work, my next book coming out and a bunch of other random projects, time has become very limited. I’ve been thrilled with the opportunities to catch up with some people I haven’t seen in a while.
One thing I always feel I need to adjust to when this happens though is the change in my routine. Driving to places far away and getting home at random hours of the night can sometimes be very taxing. This month one of the bigger challenges for me has been sleeping in beds I’m not used to. Each weekend in March I’ve gone out to a party and each weekend I’ve gone back to stay in a hotel room that my friends have rented for the night. My senses are usually at a heightened level because of different rooms with their temperatures, the amount of space in the rooms, and the bed that I’m sleeping in. Anything different than the norm of my own room at home makes me feel uneasy.
When it comes to strategies I really don’t have anything that stands out to help me in these situations. The main thing I try to do is to have as much fun as possible. Being in a fun situation usually eases most of the sensory stuff I am going through. The problems remain but they are manageable. The other strategy I use is to think out a play-by-play plan of what could happen during the night. I like to map out when it will start, when it will end and then think through some transitions I may have to go through until it does end. Elevators have never been easy for me, and I try to make sure I am never in an elevator alone, and I do check where the exits are, and am careful to keep my key.
This is something I advocate for rather frequently when it comes to adults with autism. For those who may be in similar situations to me I hope to build awareness regarding different living situations in housing or even a hotel room for the night. I think it’s important for hotels and motels to be able to provide accommodations for those with autism if they need it. Things like offering a room in the corner of a building where it may not be as loud can make a big difference. With my work with my nonprofit, KFM Making a Difference, I hope to create some type of toolkit to help those with autism make decisions in their favor when assessing living situations like this.
I’m curious to hear if others in the AA16 community have had similar difficulties. After reflecting on this, I am looking ahead to this coming summer. I’ll be traveling for speaking engagements in May, June and July and taking two different vacations with my family in August and September. What are some strategies you would suggest to help?
“California, here I come! En route to speak at the (sold out) Kern Autism Network-Autism Society Affiliate Chapter annual conference.” I posted this status on Facebook, alongside a photo of my brother and me. My message continued, “If (ok, more like when!) I get nervous and start to wonder why I am flying across the country to speak to 400-plus people, I will remember this face, and smile. I will remember that my brother cast me as Snow White, and that Disney princesses do not hide in corners. I will remember what really matters, and that will see me through.”
Those words came true in ways I didn't foresee. The journey was strenuous, and I had to tap inner reserves of patience and flexibility that I didn't know I possessed. The car rental van never showed up at the airport, so I had to make new arrangements on the spot. Then came the traffic. Though I grew up in New Jersey and lived in Washington, DC for five years, I'd never seen (or envisioned) anything like the packed five-lane highway in Los Angeles. Then again, I also never imagined that the Angeles National Forest would be so beautiful. I drove through the mountains at sunset, and the views took my breath away. I wanted to pull over and take pictures, but there wasn't a second to lose. The itinerary I'd chosen was very tight on time. It was not the wisest decision, but there were no good options for flights, only awful and slightly-less-awful. As such, I had to keep re-routing my thoughts. When they strayed into self-punishing, What was I thinking?! territory, I gently brought them back to, I did the best I could at the time.
Fast-forward to the next day, when I approached the podium sleep-deprived but still energized. As I looked out across the large room, it seemed that every seat was occupied. I thought, Guess that this is what a sold-out, 400-plus attendee event looks like! And as I spoke, everything that was not the talk fell away. It didn't matter that I was tired and nervous; all that matters was that I told stories. It was going well; I knew that I was speaking calmly and clearly. Yet there was so much going on in my weary mind that I experienced a strange disconnect. I had to stay so focused on what I was doing that my brain was unable to interpret the meaning of certain sights and gestures. For example, when I glimpsed several people wiping their eyes, I experienced deep (albeit momentary) confusion. I honestly did not understand what was happening. The uncertainty was troubling. Why were these individuals swiping at their faces, reaching for tissues? And then it hit me: They're crying … because they are moved by what I'm saying. Oh.
Now, I don't know what it's like to be on the autism spectrum, to see the world through another's eyes. But I believe that perhaps that moment was a small window into my brother Willie's life experience. As an individual with autism, it's probable that he undergoes a similar sort of deliberate mental processing in order to arrive at conclusions that many of us come to spontaneously. It's possible that he needs to add up all the clues—she's wiping her face, she's rubbing her eyes, she's reaching for a tissue—before he comes to the conclusion that others come to instantaneously (she's crying because she's moved). How bizarrely beautiful that I received an opportunity to know what that feels like.
In turn, when reporter Casey Christie from The Bakersfield Californian approached me afterward and said, “I just have one quick question—how old are you?” I almost couldn't answer her. How old was I? Laughing, I said, “You know, I have no idea!” Catching my breath, I paused, then responded with the correct answer. I could have carried on speaking for another hour, but I had trouble registering emotional states and answering factual questions. It didn't bother me, though. I felt like I was flying long before I boarded the plane, soaring like the eagle I saw in the Angeles forest on my way home.
One defining aspect of my life is my love of writing. I enjoy finding new topics to write about, gathering and putting my thoughts about those subjects onto a page, refining these ideas as I go, and receiving feedback when my work is completed.
While doing research for this column, I found articles regarding the physical act of writing and why some people with autism struggle with it. This reminded me of my elementary school years when it seemed that every writing assignment was a battle for me to complete. Throughout those years, handwritten assignments caused me a great deal of anxiety. I did not understand why I was so anxious, but I have come to the realization that my writing problems had nothing to do with finding the right words in my mind and everything to do with my physical limitations. These included:
These issues were attributable to my weak muscle tone and fine motor deficiencies. Add to this a constant, unceasing stream of potentially distracting sensory overload which affected me daily, and one can start to understand why handwriting was such a challenge for me and can be for many others on the spectrum.
This revelation also jogged my memory regarding the many exercises and activities my therapists, teachers, and parents employed to help me develop my handwriting skills. Some of the therapies I remember include using a variety of hand/muscle strengthening tools, playing various rubber band games, and doing molding clay activities. I also used paper with raised lines and an assortment of pencil grips. The raised-lined paper helped me to better contain the shapes and sizes of my letters allowing my words to be formed correctly. The pencil grips came in many different sizes and shapes and helped me obtain greater control of my writing instruments.
Learning to play the piano also greatly contributed to my increased hand strength and finger dexterity. Another activity that I benefited from was learning the valuable skill of typing. I learned from an early computer game that is as old as I am called “Mario Teaches Typing.” This skill not only helped my hands physically, it also introduced me to another form of expressive communication.
Looking back, I can see that these therapies, tools, and activities along with many others have aided me in so many different ways and have only become noticeable now that some time has passed. For instance, the typing program was just a game based on a character I was intrigued by that I enjoyed playing, but today I see how much this learned skill has impacted my life. How could I have ever foreseen my typing this column on a laptop computer while I was playing a video game? Being able to type and use a computer has had the unexpected effect of circumventing many of the issues that plagued me as I struggled with my handwriting. By writing in this manner, I am free of the anxiety and physical challenges that presented themselves when I was younger. My wish is that those who have similar challenges will be introduced to methods that may help them with their own set of unique issues and that others will be willing to provide them with such opportunities. They may not understand what is being done for them, but in time, the events of the present may become clear and reveal their usefulness. These days, I rarely compose anything more than thank-you notes and birthday wishes by hand but am thankful that my letters, words, and sentences are legible and steady as I do so.
An email from the counselor at our son Mickey’s day habilitation program:
What do you think about encouraging Mickey to try a salad maybe twice a week? He loves Wendy’s and there are some legitimately tasty salads he might like. I could start to slowly mention it to let the idea marinate. Mickey has been doing great this past month! We love him!
When Mickey was still in school, we packed him a bag lunch, or teachers took him food shopping and taught him to make his own meal. Now a young adult, he visits the food court at the mall every day. Day hab counselors try to guide his choices, but he chafes at restraint. He wants to eat what his friends eat. Armed with his wallet, he is heady with unaccustomed freedom.
“Today I had a double cheeseburger, Chicken McNuggets and fries.”
“Anything else?” I ask, cringing.
“An Oreo ice cream sundae.”
Mickey’s idea of “healthy” is ordering a small fries instead of jumbo. Every time he asks for fast food and I point out that it is not good for him, he says, “Just for today? Because I was good?”
“It’s not about being good,” I say. “It’s about staying healthy.”
Mickey doesn’t have a significant weight issue, and we want to make sure it stays that way. My husband Marc’s family has a history of heart disease. Marc is a fanatic about eating right and exercising. We are trying to teach those habits to Mickey, but it’s a slow slog up a muddy hill. (Exercise? That’s a whole other column.)
“I tried a new food today!” Mickey announces. “A vanilla cupcake instead of chocolate.”
Mickey has sensory issues. It’s hard for him to distinguish good flavors when he can’t get past disturbing textures. Lettuce repulses him. Carrots make him gag. For years, we tried unsuccessfully to desensitize him. I puréed vegetables and sneaked them into tomato sauce, but no matter how well I hid it, he’d find that fleck of parsley and pick it out suspiciously. “Hey! What’s this green thing?”
In high school, his teacher told us we should make Mickey vegetable smoothies: “Just put kale in the blender.”
“And who’s going to get him to drink that?” I asked, thinking, Obviously you don’t have any children.
If he asks for a milk shake, I toss fruit, skim milk, a dollop of frozen yogurt and ice cubes in the blender. We hide the cookies and dole them out because Mickey can devour an entire box. We make him egg white omelettes. Organic baked chicken nuggets and oven-roasted “French fries.” We offer him fruit and low-salt, low-fat snacks. When we eat out, Marc often pulls aside the waiter and whispers, “We’ll pay for the full portion of fries, but please just give him half.”
Restricting portions and modifying how we cook doesn’t teach him to like healthier foods. Nor does the outside world serve the low-fat versions we make at home. Maybe it’s unfair to expect him to show self-restraint at the food court. After all, anyone’s steely resolve can crack over a Krispy Kreme donut. How do we convince him that just because it tastes good doesn’t mean it’s good for you?
Maybe we can’t.
His food repertoire is limited. We need to work within those limitations, and our inability to control what he does outside our home. We talk repeatedly about making healthful choices. We tell him the best choice for lunch is a turkey, cheese or ham sandwich from Subway or the deli counter. A turkey burger. One slice of pizza. Food court staples like Nathan’s or Burger King come last on the list. Burger or nuggets. Not both.
We email the day hab counselor back and ask,
What do the other participants eat? Can we make this a peer pressure thing, like a healthy eating club? Set up a chart of healthy choices for the week, where everyone gets healthful foods for four days, and on the fifth day can pick a treat like a small cup of Häagen Dazs if they reach their goals?
Teaching Mickey to make better choices is a work in progress. In the meantime, I hope that ketchup really is a vegetable.
It’s the only one he eats.
Accommodations. Something to which I’ve honestly not given much thought. Cameron’s IEP is ripe with accommodations, but his school environment is such that accommodations are pretty much built-in for every student. Small class sizes are a given … Extended time on tests … check. I recall that accommodations were often mentioned in staff meetings when I was an Independent Living Skills Instructor at a postsecondary program for students with learning challenges. The line of conversation in which accommodations were brought up usually entailed tutor frustration over students not utilizing their accommodations. This was the point in the meeting where I usually secretly checked my personal email on my phone. I never really paid much attention to this issue, because I frankly didn’t see it as an issue. If students didn’t utilize accommodations, was it really that big a deal?
But now my eyes have been opened. Oddly enough, it wasn’t Cameron’s need for accommodations that shed light on the matter for me. No, this week Cameron’s sister gets the academic challenge spot light. “Challenge” is not a word often associated with Cameron’s sister when it comes to academics. Her father and I have made a diligent effort to find a school where she will be challenged and not just coast through her core subjects. Two and a half years ago, just before she entered third grade, we had her tested to see if she was really as bright as we thought she was, or if it was just parental pride (and lack of experience with a “typical” learner.) The report from the testing showed that she was in fact very bright. However, in tests that were constrained by time, she did noticeably worse. (Worse meaning her scores were in the “average” range.) The psychologist that conducted the testing composed a list of recommendations for her, and among them was an accommodation of double time for testing. Testing had never really been an issue for my daughter, so there wasn’t much attention paid to the suggested accommodations. Instead, we focused on the outstanding test scores and sought a school for her that would keep her on her toes.
Late last year, as the long shadows of winter set in, my daughter lost the joyfulness that defined her personality. My husband and I were constantly wondering what we could do to help her out of the dark clouds that often brought her to tears at the end of the day. We sought advice from her school, friends, and advisors. We saw therapists, trying to find someone she felt comfortable talking to. We considered a change of school for the next academic year. In an effort to give her something to look forward to, I proposed she test for the Introduction to Robotics summer camp offered through the Johns Hopkins Center for Talented Youth. She liked the idea of a robotics camp, so I signed her up for the standardized test required for acceptance to the program. They offer two tests—one is optional—but the score threshold is lower with combined scores. Since the tests were timed, and I knew timed tests were not her strong suit, I signed her up for both tests. She missed qualifying for the robotics camp by three points. Great! I’d just made a bad situation worse by shooting a hole in her already fragile self-esteem.
I pulled out that old report from her initial testing and re-read it. It was like I was reading it for the first time. Instead of focusing on the superior test scores and percentiles, I focused on the narrative of the report. There were very few sentences that didn’t contain the word “anxiety.” The double time for testing accommodation didn’t seem like such a trivial recommendation now. Maybe this “anxiety” was at the root of her discontent of late. I decided to have her re-test for the robotics camp, but applied for accommodations. She was granted double time, and re-took one of the two tests. The second time around, not only did she qualify for the robotics camp, but she qualified for the High Honor Award recognition ceremony for high achievers.
But the moral of the story isn’t about my daughter’s testing achievement. The real achievement is that by utilizing a simple accommodation, she was able to reach her full potential. By addressing the 800-pound gorilla in the room named Anxiety, Joyfulness and Pride have rejoined the party. Those accommodations we thought were nice if you could get ‘em but weren’t really teaching her how to work hard … well … we see those differently now. She has subsequently had a round of standardized tests at school, with accommodation. I don’t have to wait for the results to come in, because she feels good about her work. And that’s what really matters. Accommodations matter. I’ll never doubt it again.
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