It’s been about two years since Cody actually began receiving day-hab services. After a long deliberation, Bill and I have decided to end them. While there were times when it looked as though the services were helping Cody progress, there’s really not much to show for it now.
When we contacted Cody’s Service Coordinator and let her know of our decision, she suggested we try other agencies. But the truth of the matter is that this sort of job is a popular occupation for college students who are social services and psychology majors. Most of them are very young. And they use this sort of employment as a stepping stone in their career. When they do that, they don’t stay. When they don’t stay it means there is no consistency. If there is no consistency, the plan is to no avail.
In addition, being a direct care worker for people like Cody pays very little and it requires hard work and dedication. Hard-working, dedicated people are often individuals who have more life experience under their belts than the average 20-something college student. But many people like this have families, mortgages and other obligations that prohibit them from accepting low-paying jobs such as that of direct care staff. Finding a person like this who can or will accept such a position is frankly, quite rare.
So, we are now in the process of assessing our next move. What Cody needs is to learn life skills that will help him become more self-sufficient. It is all well and good to say that the day-hab services did provide social interactions for him. But did he learn social skills from those interactions? The answer to that question is mixed. When you have young people coming in who have never had any sort of life experience with people with autism, they sometimes seem to forget their own social skills. They often lack the understanding that they need to communicate with Cody the same way they would with anyone else.
In a number of my columns I wrote about Stephen. Stephen was awesome. Not only did he talk to Cody with ease, but he also set a wonderful example for him. His behavior and manners were exemplary of those Cody needs to see, learn and emulate. But others who have been sent to teach our son those skills did not measure up at all. We have had those who frequently called to ask us what we wanted them to do, in spite of the plans we discussed in meetings and were put down in writing. We had one young man who lied about our washer and dryer being broken so his supervisor would give him permission to leave early. We had another young man who stole an item from our home. And we have had more than one tech who has been way too interested in spending time on his cell phone. Those are not behaviors I want Cody to emulate.
Since I am at home all the time now, it is easy for me to take on a larger portion of teaching those skills myself. And I love doing it. This has really been what I wanted all the time and hopefully it will be permanent. But I want Cody to have every opportunity to be successful in learning and using these skills, he can possibly have. So the question becomes now, what kind of service can help my son do that?
Cody has a “Partnership of Hope” (Medicaid) waiver. We have to find a beneficial service the waiver will pay for or he will lose it. His next meeting with his Service Coordinator is in January and she is looking into options for us as well.
There is a facility in Springfield that is supposed to specialize in these services. Participating would mean that Cody would go there for a day or two every week. The program is structured like a continuing education program for people with ASD and other intellectual and developmental disabilities, and claims to teach the skills Cody needs to learn. The classrooms are small and appear to be well organized so perhaps Cody would be able to focus and learn without feeling overstimulated from the noises and activities of overly crowded areas.
So we’re not giving up, there’s still hope. It’s just a matter of which direction to head to find the solutions we’re looking for.
Imagine Christmas without the trappings: no tree, no presents, no Santa. I can picture it, because my family didn’t “do” Christmas—at least not in the traditional sense—when I was growing up. We were members of a church that believed in getting back to the basics of the holiday. In that spirit, the church asked that its members defy the consumerist “spin” on Christmas. All well and good, but this defiance came with an attitude of judgment and legalism. It was all too easy to look down on others who made different decisions. And it was also all too easy to feel guilty for wanting the “traditional” kind of Christmas. That longing was about wanting to fit in. I was a shy, bookish girl trying to get through school without being seen as “weird,” but I had a younger brother with autism, and I belonged to a church that frowned upon Christmas trees and Halloween costumes. “Normal” was a tough sell.
Even so, my brother Willie and I were fortunate, because we grew up in a family that wasn’t afraid to leave “normal” and create its own traditions. Yes, I’ve had to let go of attitudes of judgment, but I’ve been blessed with memories of reading by the fire, of watching my parents (and, later, Willie) light candles in the windows. And Willie and I were in no way deprived. Each fall, our parents would give us both Thanksgiving gifts. which we all knew were actually Christmas presents in disguise. (Their subversiveness on this point still makes me smile.)
And so, this holiday season, I consider the gifts that “leaving normal” has given me. Around me and within me, I observe the all-too-human desire to wrap up the year “successfully.” Yet I think that what we really want, underneath the perfect trees and packed schedules, is wonder. We want to be able to look around at our lives and see the beauty within them.
And last month, I had an opportunity to do just that. When my husband and I spent time at my parents’ house for Thanksgiving, I was able to step back from my preconceptions and delight in the present. Willie and I read a book together, sitting side-by-side in front of his bookcase. I looked up at the books, mementos, and photographs lining the shelves, and I saw evidence of what I’ve always wanted for my brother: a full, engaging life. That life might be unconventional, but that doesn’t make it any less real. Willie’s interests, activities, and ways of connecting are different from my own, but they are equally valid, equally vital.
Finally, my gaze fell on Willie. My brother was intent on his book. His posture was familiar; after all, how many times have I found myself pitched forward, as though to dive into a beloved book? Since Willie was leaning forward, I could study the writing on the back of his shirt. He was wearing a tee from one of the walkathons I’d participated in as a member of the L’Arche DC community. Since L’Arche did walkathons each year, community members received free tee shirts for their participation. It had become a tradition for me to hand over extra-large shirts to my dad and brother during the holiday season. I saw “L’Arche” spelled out on my brother’s back, and my heart was full.
And something spoke to me, saying: Look. Not only does your brother live this full life, but because of him, you were led to be a part of L’Arche, where you found a full life too. It’s all connected. And that’s the best “Thanksgiving gift” I could have received.
I enjoy writing for a living, but I have also wondered what other types of work might be suitable for me. There are several professions that I have considered and rejected for various reasons over the years, but one occupation which has been of endless fascination to me has survived. So, I was pleasantly surprised to find a class in voice acting in a recent catalog of elective classes being held at my old college. Curious to find out what a career in the field had to offer, I attended the class and am very excited about what I have learned about this profession and how I might find my own unique voice in it.
The instructor, himself a professional voice actor, started out by giving the class a brief overview of the kinds of work a voice actor could expect to be doing. There are two major categories of voice acting work: commercial and narrative. They encompass a vast number of genres and purposes including advertisements for television and radio, public service announcements, audio books, announcing at sporting events, Internet broadcasting, voicing video game characters, and other roles.
A potential drawback to starting out in this field was the revelation that becoming a voice actor is much like starting up a small business. There are many opportunities for work but there is also a far larger pool of talent competing for these opportunities, so it can be challenging to find employment. One must essentially represent himself by sending out his own demos to potential clients, dressing and acting appropriately when interacting with clients and recording studio personnel, and following up with clients and personnel after a job is completed.
The class’s final portion was the part I had been looking forward to the most: the chance to record a professional “demo” of my own voice and receive feedback on my performance. Each student was asked to come up to the microphone and read a piece of material called “licensed free copy,” which is basically a fictional script filled with generic names and products so as not to invite lawsuits from any legitimate companies or individuals. Our voices were edited together to form a commercial meant to simulate an actual radio advertisement. Our commercial was for an imaginary online car website and we each had to convey different emotions depending on the type of copy we received. I played the part of a frustrated customer.
I was slightly nervous before I recorded my part of the demo. The instructor had told us not to touch the microphone, but because I tend to want to touch things around me, I really had to restrain myself from doing this in addition to concentrating on delivering a good performance. In addition, I was a bit nervous with all of the people standing around me as well as with all of them looking at me, a pressure compounded by the room’s small size which made it feel like there would be no easy escape if I tried to leave. In retrospect, this “fight-or-flight” response seems a bit irrational, but it did briefly cross my mind at the time. To my surprise, I felt quite comfortable speaking during the demo itself, probably due to my familiarity with the feeling of frustration, and it was not hard for me to convey this emotion in my voice as I read the script.
After the demo was completed, the class was able to hear the full commercial. Hearing my voice alongside those of the other students felt a bit weird at first, but after the commercial finished playing, I felt proud to have had the courage to do it in the first place.
With the class completed, the instructor gave each of us an opportunity to receive feedback on our performance. My performance was assessed as being very good with one small exception. Apparently, my voice was a bit too loud, but I did convey the emotion of frustration very well. I have made a note of this and plan on working on controlling how loud I speak as I continue on this new career adventure.
My first taste of the world of voice acting was a very positive one. I was excited to do something new, but at the same time a little nervous as well. It had been a long time since I was in a classroom by myself with people I did not know, but I was able to come away from this experience confident in my ability to continue learning. I plan on researching what types of voice acting courses and opportunities are available in my area. I am sure this could be a good way to get more experience and supplement my income doing yet something else that I love. Keep your ears open; you might be hearing me in the very near future!
Throughout my life, the “issue” of procrastination has reared its ugly head more times than I care to remember. In retrospect, I can easily recognize how being an undiagnosed Aspie made a bad situation worse in this regard. I have chosen to bring it up now in this forum in an attempt to not only work through some of my own thoughts about how procrastination as it relates to my autism has impacted my adult world, but to hopefully impart even a fraction of my ever-evolving insight on the amazing youngsters in my life who share this struggle.
My first memories of procrastination in my world are probably of grade school, when I began taking piano lessons. I wanted to do well, and certainly wanted to be able to play like my father, or at least like my best friend, both of whom were gifted pianists. While I could play, I could not, to my dismay, reach the level I so desired, and as such became discouraged quite easily. This discouragement led to the procrastination—if I didn’t practice then I didn’t have to make countless mistakes time and time again, and didn’t have to acknowledge that I would never be good enough. Problem solved … oh, wait. Problem not actually solved so much as made exponentially worse, because when time and money are going into music lessons that a child says she wants and then the child appears not to want to put in the work, that is a problem. And such is the nature of procrastination, taking what may be a mildly uncomfortable set of circumstances and turning those circumstances into something that reaches disaster-like proportions in the autistic mind—we are typically not ones wired towards the middle ground in this regard.
So why procrastinate? From that first experience, rather than learning from the consequences of not practicing, I went on to an amazing academic career of putting off term papers and research projects as long as possible. One in particular stands out in my mind as it was a paper that I began writing after midnight the day it was due. How I managed through four years of such shenanigans is beyond me. I cannot offer any rational explanation as to why placing myself in situations that produced such monumental stress, anxiety and depression was my go-to position for more years than I care to recognize. I suspect—and this is where the autism comes into play, for me, anyway—that it has more than a little to do with the need to be perfect.
I recall my son learning to climb the stairs as a young child. He started up the stairs, realized he was not going to make it all the way, came back down, and did not attempt the feat again for several weeks, at which point his ascent was flawless. Even at that tender age, he was determined not to do something unless he was going to be able to do it perfectly. This pattern magnified as he grew, and has caused as much angst in his life as my tendency to procrastinate has caused in mine. I see the pattern in my students every day. A combination of not wanting or caring to think about the future running full-speed alongside an inability to do anything unless it’s going to be done exactly right can make things like postsecondary planning a bit of a challenge.
I wish I had the perfect solution for all of us. Fortunately, in my concerted attempts to STOP putting off until tomorrow what should have been done last week, I have an idea. Behavior Modification 101. We humans, autistic or not, act in ways that will bring pleasure and avoid pain. We get some positive reinforcement for everything we do. In using my Aspie powers for good instead of evil, I have decided in recent times to take a logical approach to this very irrational problem. I am learning to recognize that the pain caused by procrastinating outweighs the pleasure that comes from taking the Scarlett O’Hara approach to uncomfortable, challenging or tedious situations. Thankfully, I have a job that I adore on many levels. A perfect training ground for getting done what needs to be done when it needs to be done, whether tedious or monumentally important—or both. Lo and behold, as it turns out, I do not actually have to do everything perfectly the first time … I just have to make sure I get it done when I am expected to get it done, and if it ends up being perfect, great. If not, that’s probably okay too. It has taken me the better part of … well … quite a number of years to come to a place of being able to internalize this lesson.
It’s dreadfully hard for those of us wired for perfectionism to settle for anything less—we’d rather not try at all. So to those of you who love us or care about us at all, don’t be afraid to keep reminding us that we actually don’t have to be perfect. We just have to do what we need to do when we need to do it. As this becomes more natural to me, I am happy to report that procrastination is not the problem for me it once was. I am no longer paralyzed now that I can recognize that the payoff is NOT worth it. And that I am worth more than all the anxiety set in motion by putting off until tomorrow what needs to be done today.
One thing I’ve never been accused of being is overly optimistic. What some people may call pessimistic, I prefer to think of as being prepared for the worst. We parents of children with ASD really can’t afford to not be prepared for the worst. But sometimes, when things have been going in a positive direction for a while, it’s easy to get swept up in the good feelings, and then be caught completely off guard when something doesn’t go according to plan.
I don’t have a lot to complain about when it comes to Cameron. He’s a great kid, and has truly started to blossom as a young adult. But there are moments when I find myself thinking, “Really? I thought we were past this!” For instance, he recently returned home from school and had apparently left something on the bus, as the doorbell rang immediately after he entered the house. Cameron yanked open the door, snatched whatever he had left behind, and slammed the door. I was standing in the next room, dumbfounded. I said, “Is that how you react to someone who has done you a favor?” To which he responded by yanking the door open, barking “THANKS!” in his gruff tone, and slamming the door again. Yeah, that’s way better. I’m sure his social worker would be thrilled.
I’ve mostly been content with Cameron’s ability to manage his own schedule, and knowing how he needs to prepare himself. I can’t help but test him though. Knowing of an upcoming field trip and the related dress code, I asked Cameron which day he would be going. He didn’t know. I asked him if he was aware of the dress code. He answered in one of those ‘I’m afraid to say no, so I’ll try another answer and see if it works’ ways of his. I think the particular answer he gave was, “I might.” This field trip is to a job developer, and students have been asked to wear interview appropriate attire. The trip happens to take place during spirit week at school … the day in which students are to come to school in their pajamas. Had I not reminded Cameron to inquire about the details, he would’ve shown up for an “interview” in his pjs! But, these mistakes are not life and death situations. If he were to have gone on the field trip in his bathrobe, it certainly would have been a teachable moment.
When I catch Cameron in a situation where I feel he has underperformed, I always wonder if my expectations of his ability to manage his independence are too high. When my confidence starts to falter, I force myself to allow him new opportunities to prove me wrong. This past weekend, he flew to see his dad, and left from a different airport. I was initially tempted to get a gate pass and accompany him to the gate, but made the decision to let him go alone, which of course he managed just fine. I watched him go through security and present the TSA agent with his Metro pass instead of his state ID card. I watched the agent look curiously at the card for a moment, and then she looked back at Cameron. Before she could say anything to him, he had the proper ID card waiting in his hand. He realized his mistake and corrected himself. And that to me is almost better than not making a mistake at all. And so I continue to hope for the best with Cameron and prepare for the worst. He’s making it difficult for me to keep up my pessimistic front.
During my first semester at Seton Hall University, one of my professors told us we couldn’t use laptops in classes in order to avoid “distractions.” For some this was easy enough to do (for those who aren’t addicted to Facebook at least) but for me it was a completely different story. When I first arrived at Seton Hall I had the opportunity to sit down with the Director of our Disability Support Services to work into my courses “reasonable accommodations.” Many of these accommodations were due to my diagnosis of autism. I was granted accommodations such as extra time on tests, a private room to take tests, and a recorder to have all my classes taped.
One thing many don’t know about me though is that along with autism I have dysgraphia, a handwriting disorder. When I was young it would physically hurt to try to keep my hand still enough to write. So, when this issue came up I needed to address the fact that in addition to everything else I needed the computer as an accommodation in order to take notes.
I was thinking about this subject the other day while I was writing my signature on a form and it made me think about how a disability, such as autism, can be linked to so many other disabilities. Growing up I had issues with fine and gross motor skills, which could very well have been factors leading to my diagnosis of dysgraphia. This could also be linked today with how some of my emotional issues and sensory integration difficulties have led to anxiety when it comes to living everyday situations.
These challenges have made me question my future in the workplace. I feel as though as time has gone on, in every stage of my life, accommodations have been becoming a lot less detailed. Could this also be the case wherever I land a job next? It then made me wonder if a workplace would even be able to handle someone with multiple disabilities. More and more I’ve seen through internships that there has been training on acceptance and accommodation for individuals with disabilities but these discussions have always seemed very specific on each disability by itself … not multiple disabilities combined.
I must admit I do look forward though to tackling these challenges head-on if/when they happen. Tackling topics such as these has been something I’ve been doing my entire life. School systems barely knew what autism was in the 1990s when I was growing up, but I was able to make it through. High schools didn’t see individuals with autism as individuals who could make it to college, but I got to prove them wrong as well.
In the end, I don’t have a clear answer as to how to make these situations better. I think the greatest challenge will be the awareness of these cases where this happens. More and more we are harping on “acceptance” for those with singular disabilities but more time should be studied on how to help individuals with multiple disabilities progress, because there is a large community of us out there. In the workplace it will become a situation that should be constantly monitored. Public schools provide individualized support based in specific disability or combination of disabilities and we should encourage our workplaces to do the same.
During our Thanksgiving holiday, I made the radical decision to be present for my brother. This may sound like a simple thing, but there’s complexity to it. First, like many young adults on the autism spectrum, Willie is good at going off by himself. There are times in which he needs solitude, to be sure, yet there are also times in which he longs for companionship. However, Willie doesn’t usually articulate that need, so it falls to those around him to discern it.
Next, the choice to spend time with Willie often means stepping away from the crowd myself, and this can be tricky when I want to be a part of it all. But being Willie’s sister helps me to notice what is going on “at the margins” … and this means that I see what my brother is doing when he’s on the periphery of our family life. So, instead of pursuing additional projects around the house during the holiday, I decided to be more intentional about “tuning in” to Willie; that is, to be open to times in which he might welcome my company.
One afternoon, this meant that I put off checking my email and listened to Willie play the piano instead. He ran through his practice pieces two times each, and I rested beside him. The late-afternoon sun was filling up our living room; everything was quiet save for the music. In that half hour, I heard him with my whole heart. Studying his profile, I was amazed at how adroit his fingers were as they danced over the keys. I couldn’t resist getting out my camera, even though I knew I’d fail to capture what I loved most about the scene. As I watched him play, I thought: We’ve each found something that makes our fingers fly. For me, it’s writing; for him, it’s music.
I was—I am—very proud of Willie. Hearing him play his current favorite song (“Carol of the Bells”) showed me how much he has improved and deepened his playing in the last year. And the next morning, when he went from composed pianist to a borderline meltdown, I was able to remain calm within myself. And that is something of a miracle to me, especially after my own loss of control in the wake of one of Willie’s meltdowns last month.
During Thanksgiving week, I experienced two different borderline meltdowns with Willie. In one instance, I was the point person to help him regain calm; in another, I stood by, ready to help my aunt and uncle if they needed me. In both cases, I had the opportunity to live the lesson I’d learned from my own mini meltdown the week prior: Instead of judging Willie for losing control, I need to manage my own temper.
What did I tell myself as I stood there with Willie? Staying present is how I stay sane, I reminded myself. Just stand here. Let there be no stories of an imagined future. Let there be no judgments about the past. Just be here, now, with Willie. Just breathe in and out. Just notice that, in each individual moment, we are both all right. No matter what happens, I believe that we will both be “all right” in the deepest sense of the phrase.
And afterward, I realized something amazing: Coaching myself to be present to those difficult moments with Willie enabled me to feel more joy during the happy times. For example, one evening we looked at a dog book together. There was nothing spectacular about it, but it was inexpressibly beautiful to me. If I had to translate what I felt into words, it would be something like, “I can see absolutely nothing wrong with this picture. I would not change one single thing.”
Likewise, on our last morning, Willie was walking through the kitchen and saying, “I love … I love …” He kept trailing off, so of course my curiosity was piqued. “What do you love?” I asked. (Willie regularly makes statements such as, “I love computers!”) His unexpected reply? “I love Caroline.”
As Aspies, we sometimes have trouble reading facial expressions and other nonverbal “language.” (Indeed, some of us are prosopagnostics—we have trouble even recognizing or remembering faces.) That means we can do things like miss the comely young lady who's been giving us “the eye,” bore the heck out of a lunch-table partner with our scintillating knowledge of all known programming languages and even make people nervous by getting into their personal space uninvited. In fact, it also means we can be prime targets for robbers, rapists and serial killers, since we 're less likely to recognize danger in time to discourage the criminal or escape.
Maybe technology can help?
As mentioned above, many of us are very comfortable with things like computers. After all, unlike humans, they give us detailed error messages! (The fact that those error messages are just as incomprehensible to those not “in the know” as nonverbal communication often is to us, I think, only makes computers more attractive to many of us. Wow—here's an area of life where we're the in-group!)
Also, the closest computers come to requiring small talk is the “handshake” between modems, and that's just between each other anyway. Whenever we ask for something, the computer either does it or not ... it doesn't matter what it thinks we feel about it, or how it feels about us, or even what it thinks our real best interests are. And if it doesn't do what we ask, and we seek professional help, they tell us how to make the computer do what we want—not try to “mediate” between us and see how we can pay more attention to the computer's feelings.
As the lead-in to “Six Million Dollar Man” famously pointed out, we have the technology. For example, for years my laptop has offered me the option of setting up face recognition—that is, only allowing a login if its webcam recognizes my face. My new smartphone gives me the same option. And we can now link up our electronic eyes to some very sophisticated algorithms—artificial brains, in certain respects. For example, SAS Software recently announced a new risk profiling package that improves the odds of detecting suspicious people before the bad ones strike. Meanwhile, others are developing software that can read microexpressions—extremely brief changes on people's faces, which can indicate lying or other problems—possibly better than humans can.
So, perhaps within a few years at most we'll be able to take our webcams, smartphones and digital cameras/camcorders out, scan a crowd or even someone we're talking to and know whether to approach, back away or just walk by. We might even be allowed to use them on the job or even during interviews as a reasonable accommodation, so we may know how receptive the other person is to our proposal, a request for a day off or even that brilliant behavioral interview story. Then over time we can learn what different situations and expressions mean.
Let's use technology to make us stronger people, not helpless weaklings tied to our devices!
We’d prepared a Madison feast.
Seven of us had gathered to celebrate a "floating holiday" together. I'd set the large dining table for all of us, including Jamie, a family friend who was Madison's caregiver years ago, and Gloria, an out-of-town relative whom Madison had never met.
We had Madison favorites, including cheese pizza, but also added a new lets-see-if-she'll-like-this item, sure to be a surprise—for her and for us.
I prayed Madison would respond positively to the mixture of old and new—of both food and friends
As usual, we never really know.
When Madison arrived, she was happy, singing a bit of a new song she'd must have learned at the respite camp she'd just attended.
"Madison," I said touching my hand to her shoulder to get her eyes to connect with mine. "This is Gloria," I said, and took my hand to point, leading Madison’s eyes to Gloria.
"Say, 'Hi Gloria.'"
And she did, briefly looking at Gloria before spotting the pizza and heading toward it.
“Oh, guess it’s time to eat!” I said, directing everyone to the dining table.
But Madison went to the adjoining smaller table, pulled out a chair, and plopped down. "Pizza, please," she said, in her polite but demanding voice.
"Why did she sit there, Aunt Becky?" asked my 10-year-old buddy, Alexander.
"Hang on, Zan," I said. "Let me get her settled."
And I scurried around to grab her plate to fill it with a slice of pizza.
"This is where she usually sits when she's home for a visit," I explained to Zan and the others. “I'll sit here with her if you don't mind."
So we had our tandem pizza party while everyone reviewed together camp report and crafts.
"Now let's see how she’ll like her surprise treat," I said, pushing her plate away to show her the cookie.
"Madison, try a cookie."
And she took one small bit, and then two larger ones.
"She likes it!" I said, so excited to find one more addition for her future feasts.
Madison gobbled down another and then shot up from the table and headed downstairs.
“Where’s she going?” asked Zan.
“Probably to get her “Barney” tapes,” I explained. “She likes to gather a few of them to take back to school.”
Sure enough she came back from the basement with three “Barney” tapes, opened a cabinet drawer to get a shopping bag, and put them in it.
“Why does she do that?”
“Well, she loves Barney. He has been a special friend for her since she was very young. She still likes to get the tapes, so we let her get the tapes and put them in the bag.”
“Will she watch them at school?” he asked.
“No, not anymore,” I said quietly, so Madison wouldn’t hear. “She likes to watch them, but then she sometimes gets upset watching them and will pull out the tape, ruining the video.”
“But if she likes them, why does she do that?"
I paused and looked at Zander's deep brown eyes, so filled with curiosity—and compassion. I sat for a moment, trying to figure out how to explain it simple terms.
“Well, Zan, you know how we like things with sugar in them—sugar cookies, M&M's, chocolate cake?"
"But, sometimes it's not good if we have too much, right?" and Zan smiled at that suggestion.
"We get hyper, right? And some of us become prone to mischief?” I whispered with a smile.
“That’s kind of how it is with Madison. She loves Barney, but too much of it is not good for her.”
“Oh, I see.”
And we were off to the next topic.
Later that evening, I started thinking about all the other things that Madison has “liked” that weren’t good for her. Hand flapping. Spinning objects—from empty liter soda bottles to lampshades. Rewinding tapes until they (or the VCR) broke. Looking into the mirror and “eeee-ing” at her reflection for long periods of time.
To let her do or not do was often a difficult question answered differently by specialists and professionals.
To prevent her from doing them often caused tantrums. To allow her to do them also could cause tantrums.
“How much was too much” was an ever-present thought, constantly re-worked by age, circumstance, tolerance—and a healthy supply of mindful moderation.
As I look toward the upcoming coming holiday season, I wish for us all celebrations filled with “just right” moments—of old and new, curiosity and compassion, and the joy and excitement of well-received surprises.
It’s not every morning that I am able to sit down and read the newspaper. On the days that I do, sometimes I find myself wishing I hadn’t because the news is so bleak. On the front page of Friday’s Washington Post was a story by Justin Jouvenal covering issues regarding oversight of guardians for the elderly and incapacitated. I follow eldercare issues closely, as I feel that they closely align with care issues for adults with ASD. Both the elder and the ASD populations face the issue of who will care for them when family members cannot. The Post article illustrated what can happen when a third-party caretaker is responsible for day-to-day household administration and also controls the finances.
After reading this article, I wished Friday hadn’t been a day I got around to reading the paper. The article illustrated in vivid detail the exorbitant fees legal firms charge their clients for which they are guardians. One family was charged $6,300 to prepare $1,800 of household items for auction. In another case, a ward the Post refers to as “mentally disabled” was charged $800 by his guardian for arranging his birthday party at Hooter’s. When the first family drew an investigation into unreasonable fees, the guardian firm in turn charged the family $975 for legal fees associated with their own defense.
The article pointed out that there is very little regulation, or even training, when it comes to third-party guardians for the elderly and incapacitated. This most vulnerable population is at great risk of being taken advantage of by the very entities assigned to protect them. I can’t help but think of a scenario where an adult with ASD loses her parents only to then be swindled by the guardian legal firm which her parents painstakingly selected for her as protection after they’re gone.
Now of course, there are some invaluable services guardians provide, and not all firms bill in the same manner, but to charge $125 an hour for personal services such as renewing dog licenses is unconscionable. And as the Post article points out, this is not an isolated incident of one firm’s unreasonable billing practices.
Parents seeking care for their adult children after they are unable to care for them themselves have their work cut out for them. And it’s pretty miserable work at that, so many parents may put off today what makes them uncomfortable to think about, especially when there are few clear solutions. I wish I had a recommendation list to offer, or even a good place to start. Perhaps just acknowledging the job needs to be done is a good start.
As Cameron approaches his 18th birthday, I was just trying to get my head around a different kind of guardianship issue. (As in to what extent I need to protect Cameron as an adult, and the processes by which to execute that protection.) I now realize figuring out stuff as I go along will continue to happen as long as I am still going along.
A couple of weeks ago, Cody’s grandmother (who lives with us) became ill with an upper respiratory virus and was hospitalized twice inside of a week. It was clear to me then that her health was deteriorating quickly and that left me no other choice but to quit my job at the behavioral facility where I worked, and stay at home to take care of her and my other obligations.
This has given me a firsthand opportunity to see for myself how things are going with Cody and his new occupational tech. I quickly noticed some areas that needed some attention.
The main goal in having day hab services for Cody has always been to help him learn the skills to be self-sufficient. And it is necessary for him to be out in the community to learn part of those skills; there are also skills that need to be learned here at home. However, I found that there was more playing than what I was comfortable with going on instead.
It is important to me that Cody’s activities with the occupational techs that work with him have a clear agenda. Yes, fun can be incorporated into the plan and I want it to be fun for them both. But on days when they are going out into the community there needs to be a goal of what they will accomplish and I want to know what that is and where it will be done. So last week, when I asked where and what they were going to do and the response I received was, “I don’t know … wherever he wants to go I guess.” Well you can imagine I was less than satisfied.
I also noticed there were tasks at home that were being neglected. When I explained to the service provider in our initial meetings that I wanted Cody to learn to make his bed, I knew it would take time for him to learn to make his bed in a proper manner. But after several months I expected to at least see the techs were working with him to improve his performance. Last week, I walked into his room to find that the top quilt had simply been pulled up over a mass of jumbled sheets and blankets. I was not impressed.
Until recently, I had made it a point to check progress notes the techs would leave in Cody’s plan binder on only an occasional basis. Last week, I found daily notes that said nothing more than, “Cody went with me to the mall. He had a great time.” There was nothing about, where they went in the mall, with whom Cody interacted and in what way, or what outcome was addressed and how well did he do. I was not pleased.
My frustration here is I feel like we have made great strides to communicate with the service provider and the occupational technicians as to what our expectations are. I bought the supplies for assisting Cody in his continued academic learning. I made a special point of purchasing a schedule poster and writing the scheduled tasks on it. I posted it on the kitchen door which is a place where it cannot be overlooked. I have verbally communicated with techs and supervisors and Cody’s caseworker what we wanted to see in the plan. And the plan was written to those specifications. There is a copy of it in the binder the techs all use. I’ve read it and I feel it’s written in very clear form. So why are we having to continually address this kind of issue?
I don’t mean to sound ungrateful for these services provided that are paid for by the state. I am thankful for them. Without this resource it would mean Bill and I would have to pay for services out of pocket. Now more than ever, that is not something we can afford.
So, for now I have no choice but to learn new coping skills to manage my frustration of having to repeat myself to those who are supposed to be in charge of Cody’s services, and having to micro-manage the continual flow of strangers who enter my home and work with my son.
I still remember the first time I lost control of my breath. I was standing on the ice during a figure skating practice session when my then-coach approached and chastised me. I’d taken a quick break to talk with a friend after our lesson, and he was appalled. He told me that I wasn’t working hard enough, that I didn’t take the practice seriously. As he skated swiftly away, shame washed over me. And there were flickers of anger, too, at the injustice of his words (I’d taken a very brief break, after all). I struggled to maintain composure, but I’ve never been good at keeping my emotions under wraps; a few tears trickled over my cheeks. Worse, I felt my breathing accelerate, and I couldn’t seem to slow it down. Panicked, I moved off the ice, and spent the next few minutes trying to calm myself enough to breathe normally.
At the time, I didn’t know what “hyperventilate” meant. All I knew was that losing control over my own breath was very, very scary. I still remember the visceral terror of the first time my emotions hijacked my ability to breathe. And of course, the fear I felt only made the hyperventilation worse.
Today, I wonder if my brother Willie’s meltdowns are at all akin to that. There are times when Willie chooses to behave disruptively, but there are other times in which his actions seem outside of his control. After those meltdowns, he seems truly shaken up by his behavior, just as I was shocked by my hyperventilation that day on the ice.
Recently, Willie had an assessment appointment with a new doctor, so my parents and I have been talking about possible new treatments. As always, we’re trying to discover what support might help Willie manage his own behavior. We don’t fully understand what triggers the outbursts. There’s definitely a physiological component, yet we don’t know how much stems from anger he can’t express in a healthy way. In the past, I’ve judged my brother for his inability to control that anger. But I know myself a little better now. Thanks to Willie, I’ve smashed a guitar; I’ve run away from home; I’ve dealt with the effects of leaving normal. That anger that he feels? That anger is in me, too. I can’t deny it.
Recently, I had an opportunity to taste what it’s like to be Willie—to struggle for composure and fail in the attempt. I’d spent an hour working on a revision. Ideas were flowing; I was feeling good about doing the work. And then my Word program crashed twice, taking the majority of the work with it.
We’ve all been there, but that doesn’t make it any less infuriating. Staring at the computer screen, I wanted to throttle something. How could my work have vanished? Why hadn’t I double-checked my autosave settings? My anger started boiling. And of course, my kitten Bootsie chose that moment to leap into my lap. As I picked her up, she lunged and shifted her balance. She reached toward me, trying to prevent herself from falling. One claw caught the skin near my collarbone. Pain shot through me. It was all too much. I started crying and yelling, and the cat panicked too. By the time I managed to detach from her, I had officially lost it. I chased after the cat, my anger ablaze. She cowered as I yelled things that would make my mother want to wash my mouth out with soap. It was not my finest moment.
As I stood in the bathroom bandaging my chest, I felt my breath careening out of control. With an effort, I did the breathing exercises that my parents do with my brother. By grace, I also remembered Anne Lamott’s line from “Bird by Bird”: “Your anger and damage and grief are the way to the truth.” In other words, order to get to the truth, you have to get into the messy parts of yourself, the things you’d prefer to disown. (I hate that.)
Once calm, I stared at my reflection, and shook my head. Willie, I said to myself, I’m sorry that I ever judged you.
I recently completed a six-week anti-bullying class. The class met once a week and consisted of a group of people with disabilities like me. Our instructor led us in discussions regarding the issue of bullying, how it applies to us, and what we can do to prevent it from happening to us and to others. Through these lessons and class discussions, I have uncovered a wealth of information on bullying which has greatly broadened my understanding of this subject.
It was firmly established at the beginning of the class that a typical bullying situation revolves around four types of people: the bully or aggressor; the victim or “bullied”; the authority figure, who can be a teacher, parent, or other person in a position of influence who can prevent the situation from escalating further by positively intervening; and the bystander, a person “watching the wreck” who could intervene, go for help, or simply take no action at all. There are also different forms of bullying including physical, mental, emotional, and psychological. The bully may have different motivations for what he does including lack of self-confidence, a desire to demonstrate toughness, or mere habit.
The class as a group discussed strategies for dealing with bullying situations in our lives should we encounter them. We were taught that there is an effective three-part plan to stem bullying: have knowledge of the bullying situation and identify all of the participants, intervene in the situation and help to put a stop to it if one is able, and find an authority figure to help if the situation is escalating. It is essential to remain calm and react in a positive manner. Expressing self-confidence, compassion, and rationality help to get the problem under control.
We also learned about another strategy which illustrates a way to peacefully intervene in a bullying situation. It uses the letters in the word “assert” to represent each part of the strategy and to demonstrate the assertive attitude needed to carry this plan out. The first letter, “a,” is for “attention,” the first “s” for three words, “simple,” “short,” and “soon,” the second “s” for “specific behavior,” “e” for “effect on me,” the “r” for “response,” and “t” for “terms.” In a nutshell, when confronting a bully, one should, through brief statements, address all of the relevant details of the problem at hand and the consequences of the bully’s actions. This method provides an opportunity for a person to peaceably present to a bully all of the details of their hurtful actions and give them a chance to change their mind before further harm can be done.
We further learned about different statements we could use when confronted with bullying problems. Many of them take the form of “I statements” which place emphasis on the speaker rather than the person being spoken to; this places less pressure on the bully so that she may respond more peaceably to others. Many such statements begin with the words “I feel,” though others do not, but all describe the feelings of the speaker concerning an aspect of the situation at hand, express mutual understanding on the speaker’s part of the other person’s situation, and emphasize the consideration of more peaceful, productive methods of achieving what all concerned parties want. One example of this type of statement is: “I feel awkward when you tease me about being short. Please stop saying that about me.”
We also discussed various other topics during the many weeks of the class regarding bullying. One of them was the merits of utilizing humor to ease tension among people; I feel this approach could prove very effective based on the class’s role-playing skits for preventing bullying situations. Another important point was that people should travel in groups to avoid finding themselves alone and vulnerable, especially in dangerous areas. One last very important point made was that if a situation becomes too intense for one to handle, he should move away from it as quickly as possible and find help. In the end, I believe I gained much from attending these anti-bullying classes. I became more familiar with an unknown area of life, learned some very useful methods of diplomacy, and met a lot of new friends in the process. I realize now that bullying is a very big problem: one that all of us need to be aware of and guard against.
The turkey has almost finished roasting when Superstorm Sandy makes landfall. Our lights flicker and go out. I line up candles on the kitchen counter and call our son Mickey to come eat dinner.
“Are we having an adventure?” he asks. He sounds nervous.
“We certainly are!” I say cheerily.
All night I lie in bed listening to the wind howl, praying none of our massive oak trees will fall on our house.
My husband Marc and I wake to news of devastating destruction. Enormous trees have toppled in our suburb north of New York City. Telephone polls have sheared off; electrical wires litter the streets. People have drowned, and entire communities have washed away. NYU Medical Center in Manhattan—a facility we know well from our stays on the epilepsy floor—has flooded. Nurses and doctors have managed to maneuver every single patient, even ones on ventilators, down dark stairways to safety.
We call our older son Jonathan in Manhattan, who has lost power too, and urge him to take refuge uptown with family.
I find Mickey flipping light switches back and forth. “I’m making the power come back,” he explains. Magical thinking.
“It doesn’t work that way,” I tell him, “but we can still cook.” Luckily we have a gas range. I fill a pan with water, strike a match, and open a box of macaroni and cheese.
“This is the adventure?” he asks.
“Oh yes!” I say cheerfully.
We have a gas-fired water tank. As long as the hot showers hold up, we can hold out.
Halloween has been cancelled. I start eyeing all the unopened bags of Fun Size Candy Bars. I distract myself by making strong coffee, and listen to news on the radio. It’s gut-wrenching. A mother’s two children have been ripped from her arms by raging flood waters. As soon as Mickey walks in I switch off the radio.
The food has thawed. We toss everything into four large trash bags. It is 41 degrees outside, yet Mickey still insists on wearing nothing but shorts. He has always hated the feeling of clothes. Why does he seem so impervious to cold?
“Put on sweatpants and a shirt,” I insist.
“No, I need to nap,” Mickey says and climbs back into bed. He resists all efforts to get him out of the house. Finally we lure him to an early dinner at the deli with the promise of burgers and fries. We are walking through the parking lot when Mickey suddenly says, “Oh no. I forgot to put on underwear.”
The eerie silence is broken only by the steady thrum of a neighbor's generator. The power company is saying it will be another week. Just shoot me now.
But I know I have no business complaining when others are in so much worse shape. We’ve been lucky; the house is standing, and we’ve had no property damage. I’m thankful I don’t live on the Jersey shore, where houses have been swept off their foundations. Or Breezy Point, Queens, so ravaged by fires it looks like London after the Blitz.
Our synagogue has power. They invite us to share the warmth and WiFi, so we pack Mickey’s electronic toys, our phones, the laptop, a power strip, and a shopping bag’s worth of chargers.
“We’re still having the adventure?” Mickey asks dubiously.
“Absolutely,” I say, determined to stay upbeat. Marc goes online to order 40 D cell batteries for our lanterns. At the dinner table that night I snap a photo on my phone and post it to Facebook with the caption: “Dining by lantern light. #Sandy.”
I think about packing a bag and going somewhere warm; several families have invited us to stay with them. Which would be worse: uprooting Mickey, or trying to explain his behaviors to people who haven’t met him? How can we leave our two cats? The elderly one has a heart murmur. After I hear a policeman on the radio say, “Empty houses are a burglar’s dream,” I decide to stay put.
Our synagogue invites people without power for a Shabbat community dinner. “Can Wario come?” Mickey asks. Wario is a four-inch beanie baby Nintendo character he used to carry with him for comfort years ago. He jams Wario in his pocket. We enter the sanctuary, feeling shell-shocked in the dazzling light. Clutching Wario, Mickey bops beside us in time to the music. Afterward, he works the crowd. Attention must be paid. Mickey walks up to the new rabbi and introduces himself. “He’s glad-handing like a politician!” Marc says, marveling.
“He feels safe here,” I say.
The cold is relentless. Our beds are piled high with quilts and comforters. Marc and I hear reports of gasoline shortages. Someone has pulled a gun on the gas line. Or maybe it’s an axe.
On the way to the diner Mickey announces, "I'm going to order a burger and fries to cheer me up." He asks if he can get a new game for his Game Boy, and tells me, "I'm going to stay in Best Buy till the cows come home."
Daylight Savings Time ends. The house is dank, and we are dispirited. My muscles ache from shivering. A week in, our cat Fudge still waits patiently for warmth in her customary spot atop the kitchen heating vent. “Is Fudge dying?” Mickey asks fearfully.
“Of course not, honey,” I tell him. “She’s just cold.”
The temperature plummets into the 30s. What if the pipes freeze? The wind picks up; a nor'easter is heading our way. How much longer will this last? Will we?
We are grateful to a friend with power who cooks and brings us a hot dinner. Mickey bolts his food, then climbs back into bed to cuddle under four quilts with Fudge. Marc opens a bottle of Chardonnay we’ve been saving; it has chilled to perfection in our unheated house. We eat in front of the fireplace. It feels basic. Primitive. I think of a refrain from the book “Game of Thrones”: “The night is dark and full of terrors." I wonder what terror the dark holds for Mickey. Our bit of heat doesn’t even reach the rest of the room; it’s black beyond the fire’s protective glow. We huddle close to the hearth in our circle of safety.
Marc attempts to read a book, finally putting it aside. “Maybe Abe Lincoln could read by fire light, but I can’t.”
“I’ll never take our creature comforts for granted again,” I say, even as I know I will do precisely that a month from now.
“I’m not going,” Mickey says flatly. “First lights. Then school.” He struggles to explain, and finally says, “I want to have an adventure with you.”
Does he think “adventure” means excitement, or deprivation? He has endured darkness and freezing temperatures, shortage of favorite foods, the disruption of comforting routines. He has seemed so resilient till now. It is the thought of leaving us that unhinges him.
“How do people die?” he asks.
“They get very old or sick,” Marc says. “Or sometimes they have an accident.”
“Did Aunt Tessie love me before she died? Did Uncle Stanley?” he asks.
“Of course,” I say. “Very much.”
"Because I'm a favorite kid?"
“Yes,” I tell him.
"I’m a cute little guy?"
Sometimes his sweetness slays me.
"I miss my friend Emily so much," he confides. Emily is away at school. He is grappling with more loss than I’ve realized.
We are recharging our devices in the synagogue library when our neighbor calls to tell us we have power. We are back on the grid.
“The adventure is over?” Mickey asks.
“It is,” we reassure him. ”Everyone is warm and safe.”
But of course that isn’t true.
We take it as given that electricity will always flow. That fuel will be readily available. That the food supply is limitless. Superstorm Sandy has reminded us how vulnerable we are, and that safety is a fragile construct.
This week’s “Transition from the Trenches” highlights another example of Parenting Outside the Box. Last month, the spotlight was cast on Deborah Barrett who helped her son find employment through the micro-enterprise endeavor, Anthony at Your Service. In addition to employment, a key transition issue is housing. Debra Walker has come up with a creative housing solution for her adult son with autism, Davis. Debra and her husband, Jim Tebay (Davis’s stepfather), were motivated to find a living arrangement for Davis where there would be better control of outcome for both Davis's quality of life and his independence while using a sustainable model. The group homes which had been considered over the years presented too many compromises to the desired outcomes. A key consideration they sought in the living arrangement was a facility with a viable means to support a person with autism who had a full schedule of work, play, and community involvement, as well as a canine companion.
While many parents find their careers are formed by parenting a child with autism, Debra utilized her professional experience as VP of Health Care Practice at Development Dimensions International (DDI) to implement a housing solution for Davis. In Debra and Jim’s creation of a customized residential solution for Davis, Debra has put to use the practices DDI embodies in the talent management consulting arena. Debra’s story was featured in a DDI publication, in which she explains her intentions for creating a home for Davis: “As he transitioned to adulthood, I wanted to create a home for Davis (and others with autism) in which he could live as independently as possible, where his safety and needs could be met to exacting standards by compassionate and loving staff, and where he could continue to develop and hone new skills and knowledge.”
Davis lives in a private residence that is privately owned by Debra. Eventually, her estate will move the property to a non-revocable estate for Davis. The home is licensed as an independent living facility in the state of North Carolina and operated by a non-profit organization, RHA Health Services, which employs the staff as well as provides administration services such as payroll and state required training. In finding an agency to work with, Debra and Jim conducted their own research based on the agency’s sustainability, their track record in the community, professional administration, and willingness to work with the family to achieve their stated goals. Debra retains control over staff selection and training specific to knowledge of autism and Davis. Pulling from her professional experience, Debra has identified key competencies and attributes she looks for when screening staff applicants: motivational fit for the position, compassion, job experience, work standards, coaching, information monitoring and follow up, collaboration, safety awareness, decision-making, and communication skills.
Davis is employed at a nearby resort and works three days a week. He also volunteers at his church two days a week. Beyond working and volunteering, Davis has responsibilities at his home as well. He is involved in maintenance, cleaning, preparing meals, doing laundry, and caring for his canine companion. Davis is supported by his thoroughly vetted and aptly trained staff throughout the day.
Davis has been living with this custom arrangement for over seven years, and there have been lessons learned along the way. The original arrangement of the home involved another agency and two roommates. (The roommates did not work out.) Changing agencies required reestablishing state licensing, which also impacted funding qualifications. Selecting a roommate is more than just finding adults with ASD. Different care requirements and personal interests have a significant impact on the level of care each resident receives. Davis is more interested in physical activities such as his workouts, hiking and skiing, as well as social interactions outside the home. The family is now looking for another roommate who is more closely aligned with their goals and Davis’s interests. The family receives prospective roommate candidates from RHA, staff, and other networked community organizations. One challenge the family faces when reviewing candidates is being able to fully understand a potential roommate’s needs while navigating the HIPPA privacy rules.
Debra, Jim, and Davis had a clear vision of the type of living arrangement Davis needed. Because the existing solutions required compromises to that vision, they created a solution that checked all the boxes. Davis now has the supports he needs to work, volunteer, socialize, exercise, and care for a canine companion. And those supports meet the exacting standards set forth by the family.
Do you have a creative solution for postsecondary education? Do you know someone that has taken home schooling to the next level? We are looking for education themed examples of Parenting Outside the Box. Please email me if you’d like your story featured in next month’s Parenting Outside the Box.
This past weekend included the 237th birthday of the U.S. Marine Corps, and also Veterans' Day/Armistice Day/Remembrance Day (celebrating the end of World War I). Like many Americans and others, I recognize these dates—especially Veterans' Day, as Emily works for the U.S. Department of Veterans Affairs.
But also, I follow these things because I've liked the military since junior high school.
In part, I suspect my interest in military affairs comes from an interest in physical power. Being bullied from sixth grade onward can do that to you. Different people respond to things in very different ways. For example, Carol Gerber in Stephen King's “Hearts in Atlantis” gets seriously beaten by some bullies, and reflecting on that, becomes an anti-war radical in the 1960s. She apparently felt that she would never want her own country to do to others what had been done to her. On the other hand, I feel that in a world where naked force all too often reigns supreme, it's much better to be strong than weak.
In any case, from eighth grade onward, I became a strong military (especially Army) fan. In fact, in ninth grade, when in Business Dynamics class we were asked to research and present information about two occupations, I chose Army helicopter pilot and Army mechanic. Neither of which, by the way, I had any desire or aptitude for. I don't know how I picked those particular Military Occupational Specialties. On the other hand, later on I got a pamphlet in the mail offering Air Force mechanics training. Maybe I come off as someone who's good with tools. Heck, I certainly used to be much better with tools than with people!
I even wanted to apply to West Point, which trains Army officers. (As my one concession to common sense, I chose the Army because I commonly get seasick and motion-sick.) So, a kindly retired colonel arranged for me to visit West Point the summer after ninth grade, to see a soccer game. (It helped that I lived on Long Island; he set it up so I could go with a group.)
All this despite the fact that I had serious problems getting along with people, especially authority figures.
Finally, in the fall during 11th grade, I saw the light and decided the military was not for me. Just in the nick of time, too!
(Incidentally, the closest my family has to a veteran is my paternal grandfather, who served in the Merchant Marine.)
Many Aspies, in fact, do well in the military. After all, the armed services highly value technical expertise, attention to detail, procedure and precise directives. Depending on which autistic traits dominate in a given Aspie, the military may be the best place for him.
On the other hand, even more than in the civilian world, a military member must not only take orders very well but also get along in very close quarters, with minimal privacy/decompression space, with a wide variety of people—possibly including people from other countries. Also, much more than in the civilian world, conditions may change with no notice or time for detailed explanation.
Finally, much more than in civilian life, people work, live and sleep interdependently. In “A Few Good Men,” U.S. Marine Colonel Nathan Jessup pointed out, “We follow orders or people die.” There's a reason why in basic training or boot camp, and often beyond, an entire unit can be punished for a single person's mistake: That's how it works in combat. One missed maintenance, one sleepy sentry, one unauthorized light on after dark in a combat zone, can mean everyone in the squad, platoon or company dies, a plane gets shot down or a ship sinks.
Perhaps for this reason, after due deliberation the U.S. military has decided that autism spectrum disorders (ASDs) are incompatible with military service. This does not mean that every single Aspie, or even almost every single Aspie, is unfit for military service. It means that while some Aspies are fit, enough are unfit—in ways that cannot be easily detected in time—that just like with many other disqualifying conditions, the lesser of two evils is to exclude all of us.
I know that some Aspies, their families and others question this action. I believe the military knows what they are doing in general, and having no reason to seriously doubt their decision here I support it.
Now that I am entering the phase of my life I could deem “Judy, Part II” (to steal the language my ex used on Facebook earlier this week when referring to himself), I have spent some time considering what life as a single adult woman with Asperger’s is going to look like. This is unchartered territory for me in a very real sense. I did not receive my AS diagnosis until 2011, and it was only in the five years or so leading up to that point that I had come to recognize that I fit quite nicely into the autism spectrum, thank you very much. Now that I know I’m not crazy—which is truly what I believed for a very long time—I can’t help but wonder what this “Part II” is going to look like.
Psychologist and author Valerie Gaus noted in a 2011 interview, “For people with Asperger’s … avoiding interactions is more about self-preservation … They’re well aware that they’re unable to read cues or know the appropriate thing to say. They’ve also made mistakes in the past and experienced rejection.” As much as I tend to bristle at what could be termed sweeping generalizations made about individuals with Asperger’s by individuals who do not have Asperger’s, there are exceptions to every rule and I will make an exception in this case, because Gaus has hit the nail on the head, so to speak. Cognitively, I know the right thing to say. I know what constitutes expected casual conversation when getting to know someone, I know (for the most part) how to dress and for what situation. I know when to make eye contact, greet people I am meeting for the first time with a smile, and so forth. The problem is, the number of situations in my personal life where I can actually pull off most of these expected social skills is, shall we say, variable. Knowing how to do something is no guarantee that one will be able to do something. It is an extremely frustrating way to live. It can be an extremely frightening way to live. And to address the point made by Gaus, it is a set of circumstances tailor-made for social withdrawal. Who among us, Asperger’s or not, wants to be a poster child for the definition of insanity? I for one am tired of doing the same thing over and over and expecting a different result. The reality is I do not do well socially in situations where I am among unfamiliar people, and if I do know people in the group I will figuratively cling to them for security. I spent years doing this with my husband. I have a terribly difficult time initiating conversations or even small talk with new people, and those mistakes I have made in the past absolutely cause fear for what the future holds.
Bottom line, I have not been known to be able to trust myself. As they say, admitting the reality of the situation is the first step towards finding a solution (assuming one exists), so I will admit now that I don’t have the first clue what comes next. At the moment, I am most assuredly not looking to put myself in situations where I will have to stretch myself beyond my well-established comfort zone. In other words, as of right now, if I never date again that will suit me just fine. Some might consider this an extreme, perhaps rigid, stance to take, but what can I say, I have Asperger’s! And for “Judy, Part II,” I have that knowledge and the wisdom and understanding that come with it. Will it be important for me to attend to situations such as being out and meeting new people? Probably, down the road a bit, on the assumption that my children will one day get married and there will be in-laws to interact with! Knowing the mistakes I have made in the past and understanding how those mistakes came to pass, as well as understanding that I really am not crazy after all, puts me in a position to be gentle with myself and let go of the need to control every social situation or else avoid it all together. I just need the rest of the world to be patient with me, so that what I’m quite sure would be the overwhelming urge to retreat does not take hold. I would like to think that I’m worth it.
And that’s a mindset that “Judy, Part I” absolutely did NOT have.
There are some things I just don’t get. I do not understand how someone who refuses to eat lettuce without gagging, or walk on a beach barefoot, or wear a shirt with a collar because it’s itchy, can walk around sneezing and constantly blowing his nose without a complaint. It would seem to me that having a stuffed-up, runny nose would put someone with sensory integration issues over the edge. But not Cameron. He could be in a state of viral infection that would put most of us in bed for a day or two, and Cameron will just keep calm and carry on. That may sound great, compared to the option of having a hypochondriac constantly complaining about every little discomfort, and Cameron’s atypical sick male attitude does have its advantages. But I worry about Cameron’s ability to assess his own well-being, and to take the necessary actions when he’s ill. Can he really take care of himself, if he doesn’t even know he needs care?
A few years back, Cameron and I were at the mall, and he kept having coughing fits. The pediatrician’s office was right across the street, so I called to see if they could check him out quickly. As it turned out, Cameron had walking pneumonia! He was really sick, and needed to stay home a few days to fully recover. But had we not been together and had I not witnessed the struggles he was having, he never would have come to me to say he didn’t feel well.
I suppose a well-being assessment is a teachable skill. Cameron has learned that if he’s sneezing and his nose is running he should take his allergy medication. If his breath becomes wheezy, he knows to use his reactive inhaler. We’ve been fortunate enough that Cameron has rarely been ill. But that means that there is a missing learning experience of what to do next if an inhaler or allergy pill doesn’t fully do the job. So how do you teach hypothetical situations? It’s not dissimilar from teaching a trusting child about stranger danger, when the child thinks anyone who smiles at her is a friend. It’s a real challenge to come up with a wide enough range of hypothetical situations that will create a successful response in a real situation.
For now, I guess it’s on me to be observant, ask the right questions, and instill the right behaviors. When Cameron begs off from doing his chores, or shows a loss of appetite, I will know that something is truly amiss. It is in those situations that I need to be really conscious of demonstrating the right things to do when you’re sick. Thankfully he’s compliant, so if I tell him to drink plenty of water and go to bed early, he’ll do it, and maybe he’ll remember to do it the next time he’s unwell. I don’t know that Cameron will ever be truly in tune with his body, but there are ways he can be taught to keep his body in tune. They are important lessons, to be sure.
About a week ago I received notice from the Autism Research Foundation that I was selected for a Dr. Margaret L. Bauman Award for Excellence in Serving the Autism Community. In the notice they mentioned that I would receive the award at their annual “Current Trends in Autism Conference” which is actually happening today in Burlington, Massachusetts.
“Excited” would have been an understatement to describe what I was feeling when I learned of the award. It is a tremendous honor, especially when I found out I was nominated under the category of “Adult Services.” When I started advocating for autism in high school, my main goal was to reach out to my peers. In college I focused on reasonable accommodations for postsecondary education, while today I’m concerned with helping young adults with autism live independently.
I believe the message of serving others needs to continue if we want our autism community to thrive in the future. I’ve written in the past about the popular image of autism being that it’s only an issue for children. We need to remain aware that serving adults with autism is just as essential. Serving others is important but when it comes to autism it all begins with understanding the diagnosis itself, then going out there to see how you can get involved. In this column, I want to discuss just a few ways I got involved in serving and how others could do the same within the community.
One of the easiest ways for people to serve is by volunteering with a local/national autism organization. Many of these volunteer opportunities come by attending a charitable event that is focused on raising funds toward a specific mission of that organization. In my work with Autism Speaks I often tell families one of these ways is to get involved with a Walk Now for Autism Speaks event nearby. I’ve participated in our Northern Central New Jersey Walk for over six years now.
Another more extensive way of helping is by starting an organization/group to serve a need that is lacking in the community. A few years ago in my home state of New Jersey I saw a lack of adult services for those with autism. In response I started an organization call KFM Making a Difference to focus on disability advocacy and housing. I’ve been doing this for over two years now and last April I decided to take my efforts further when I filed paperwork to establish my group as a nonprofit corporation.
Finally, one of my favorite ways of serving is helping spread positivity and encouragement amongst other young adults on the spectrum. In my work as a self-advocate, I’ve always encouraged these individuals to understand how powerful their impact can be in their own lives and the lives of others, if you can accept who you are and also accept the people around you. It’s a main reason I came out about my autism. I wanted people to know who I really am and understand that my difficulties were things I understood but didn’t see as deficits as others might. I share these types of experiences I’ve had in my life with others in the hope that we can start shaping the world with a brighter outlook on autism while also focusing on the areas for improvement that all of us have as human beings.
So regardless of whether you consider looking into one of these ways of helping our community, just know that it is important for those with or without autism to serve the world around you to the best of your abilities. Many times I see people who think of serving as a necessary burden but service should and can be beneficial to your overall development as a person. When it comes to adult services for those with autism, we welcome those who seek to accept, serve and develop. It is time to help in anyway we can and become part of a large, accepting and tolerant community.
I woke up today thinking about the many small choices that add up to the larger whole that is my “Leaving Normal” life. At present, I'm a self-employed writer living in a small town. As I consider the decisions that brought me to this point, it's clear that my brother Willie has played a major role in many of them.
First, I chose to spend a year living at L'Arche Greater Washington because I wanted to learn how to love and accept my brother. (L'Arche is a faith-based non-profit where people with and without intellectual and developmental disabilities share life together in community.) My “year of service” led to a five-year commitment to the community, and the experience gave me a good sense of what life can be like for people with special needs who are receiving individual-specific supports within the context of community. In “It Takes a Village,” my AA16 colleague Julie van der Poel noted, “If I’ve learned anything on our [Transition] path so far, it’s that you will need help from various villagers …. The transition path isn’t clear cut, and many hands make light work. Fortunately, most of the villagers along the way are friendly and helpful in countless ways.” I wholeheartedly agree.
Next, my husband and I recently chose to leave Washington, DC and move to a small town in Alabama. We made this decision for practical reasons (such as the significantly lower cost of living), but for relational ones as well. In Washington, we were working long hours, and we barely saw one another during the workweek. When we did spend time together on the weekend, one (or both) of us was always too exhausted to do much. I wanted more for our marriage “in the now,”and in the future as well. During that time, I also remember thinking, “I can't imagine needing to provide care for another family member while we're living like this.” The idea of having a child, the thought of someday supporting my brother … these weren't just overwhelming possibilities. They were impossible given the constraints (and associated costs) of our lifestyle. And I knew that some form of family caregiving—be it for young children, aging parents, or a sibling with special needs—would probably become a part of our life at some point. This being the case, we decided to make a big move, for the sake of our current and future relationships.
Finally, our historic home contains three apartments; we live in one and rent out the other two. We've chosen to “live lightly” in a space that meets our needs (and is much roomier than the tiny studios we rented in Washington). And it's been in the back of my mind that, should Willie ever need to come and live with us, we'd have the possibility of offering him his own apartment. Our home lends itself to the idea that Willie could have some degree of daily life independence while receiving practical and relational supports. To be sure, providing care for Willie would be a major change, one that would require a great deal of communal support. Even so, it reassures me to know that our home could facilitate a life of dignity for my brother.
Finally, the flexibility of my work allows me to take more time to care for others, and to care for myself as well. For example, I help out at the local yoga studio, go for morning walks around the neighborhood, and hike with my husband on the weekends. In slowing down and spending time in nature, I can relate to AA16 columnist Benjamin Kellogg's reflection: “Sunsets are a common event in my life, but now I truly appreciate them. I am continually amazed by how beautiful, moving, and meaningful each one is to me.”
I don't know if I'll ever need to become Willie's full-time caregiver, but I endeavor to prepare for that possibility. I've had to listen to the rhythm of what was most important to me, and make decisions accordingly. And, ironically enough, the choices that I've made out of love for Willie have been the ones that have most nourished me.
I recently learned of an organization that has been established in my hometown’s school district. The Special Education Parent Teacher Student Association (SEPTSA) was created to bring people concerned about the welfare of special needs children in the district together so they could assist special needs children, exchange ideas, and learn new and changing information regarding special education law. My mother and I were invited to attend a meeting by my former special education teacher who helped form the group and is now the acting president. After hearing what the group’s members and the guest speaker for the meeting that night had to say, my mother and I also became members. I am excited about what this group has to offer.
SEPTSA will work with parents, teachers, and special needs students to create the most stable possible educational environment for all involved. This sounded very promising to me, because even though I have not been an active part of the school district for many years, I still maintain a vested interest in making sure that all special needs students in my area have a chance to succeed in academics and prepare for the challenges they will face for the rest of their lives.
A SEPTSA meeting always has a presentation to offer its members. During the meeting we attended, a representative of a local advocacy center which assists parents of children with disabilities on many different levels made a presentation. She discussed several recent developments related to special needs education, mostly concerning new state laws and changes in existing laws for my home state of New York.
One of the most prominent of these new laws is the New York State Dignity for All Students Act which became effective in July 2012. This new law added an article to New York State’s Educational Law which declares that no student will be exposed to prejudice or persecution in any form including “race, color, weight, national origin, ethnic group, religion, religious practice, disability, sexual orientation, gender, or sex” from members of a school’s staff, or other students on a school’s grounds, at school-affiliated gatherings, or in school vehicles. This law also requires schools to change their internal policies to ensure the prevention of bullying on school campus using easy-to-understand and suitable wording so that all employees and students have a clear understanding regarding the required appropriate behavior.
Many other topics of interest were covered by the representative during her presentation. She encouraged attendees to look up various resources she provided for more information about the areas covered. The representative encouraged attendees to consult Wrightslaw, an online database of information about special education law. She showed how easy it was to look up particular topics using Wrightslaw’s search engine and displayed a portion of the vast selection of products from its online store, including an extensive collection of DVDs and books, all related to the subjects covered on the website.
The SEPTSA meeting opened my eyes to just how many parents, teachers, and others in my community are concerned about the education of disabled children. The representative’s presentation was also very interesting because it reminded me of a lot of the struggles my parents went through to obtain the best educational environment for my needs. I will be attending future SEPTSA meetings to find out how to take advantage of the resources this group can offer me and others like me. I look forward to learning more about and becoming more involved in many different areas regarding disabilities and special education not only in my area, but on a nation-wide basis.
First published December 6, 2011.
It wasn’t my idea.
Three weeks ago, she asked if Madison would be home before the holidays.
“I’d like to get some photos of Madison with the kids,” her step-mom had asked.
“Sure,” I replied, wondering how I could pull that off. Although our reconfigured families are more than amicable—flexible visiting arrangements, shared holidays and even an annual vacation together—Madison is always a wild card when she joins us.
The holidays are the worst.
One Christmas, I had purchased a large TV/DVD/VCR combo, the pre-flat screen 53-pound version. I had hoped to use it to transition Madison from VCR tapes to DVD’s. After she went to bed, the other kids helped me swap out her 13-inch combo for the monstrous replacement. We plugged it in and hooked up the cable. We thought she would love the bigger screen and especially all the new buttons. She had already worn the lettering off the REW button of the old set.
Christmas morning, she raced into the room to grab a video to play, her customary first activity of the day. She stopped cold, confused by the new TV. We showed her how to work it and put in a new DVD—“Barney”, of course—and returned to the tree for more presents.
“Mom,” one of the kids hollered. “Look at Madison!”
As I spun around to peek into her room, I saw Madison lifting up that humongous TV and pulling it off the counter, the cable connection the only thing stopping her.
“Madison, put down,” I instructed. “Look, new TV, new video,” I said and pointed to the VCR opening. This time we put in an old “Barney” tape.
Again, she seemed ok, until she disappeared to the basement and came back with the old TV.
She looked at us and said one of her few meaningful phrases, “I need help please.”
So we swapped back the TVs and eventually made a plan to keep both TVs and phase out the old one. But, that Christmas morning was stressful—almost dangerous. If she had dropped the TV it would have been disastrous.
Another Christmas morning, Madison began her day soiling her pajamas and then finger-painting with it. My oldest daughter, then 14, had to clean up the mess since my wheelchair prevented access to her room and our regular caregiver had the holiday off.
That was it for me. After that episode, I decided that our family needed floating holidays. We would celebrate when we wanted to celebrate and not let the calendar run—or ruin—our life.
Our best gatherings with Madison are generally food-based and short. If there are too many people or too much commotion, Madison loses it, tantrumming in anger or crying quietly with tears streaming down her face as she sings her sad song of mournful crescendos. Both break my heart because I still don’t know what causes them or how to stop them.
But we try.
Floating holidays help. We pick a time and location that works best for everyone, plan for the happy-mad-sad-Madison possibilities, and execute.
So Thanksgiving this year became a photo-shoot Saturday, with plenty of food, caregivers, photographers, and wardrobe changes for both families.
Madison was extraordinary. She let her sister dress her twice and actually looked at the camera a few times as we prompted her, “Madison, show me your shiny teeth,” and “Madison, say, ‘cheese.’”
But the best shot was her response to my prompt, “Look at Mommy,” as I waved my hands high in the air to get her attention.
True to form, she waved back—the darling.
And we all laughed, even Madison. She was so engaged, a rare treat for all of us.
And I was relieved, but mostly grateful and deeply happy that I, too, had responded to a worthy prompt.
Even though it wasn’t my idea.
While flipping radio stations in the car today, I happened across “Firework” by Katy Perry. Within seconds I started tearing up. It has been WEEKS since I saw Perry’s performance with Jodi DiPiazza on Comedy Central’s “Night of Too Many Stars.” And yet the emotional response I had that evening is still very close to the surface. Not being one for touchy-feely sentiments about autism, the tears I had running down my face that evening were immediately chalked up to some hormonal imbalance. But as I heard Perry’s song today, and relived that performance with DiPiazza, I came to understand my emotional response. I was overwhelmed by the idea that this young girl, who was not expected to speak and whose parents were cautioned to not expect much for their daughter’s future, was actually on stage with one of modern day’s hottest pop stars. This young girl was holding her own in front of a huge live audience, and performed like a pro, never missing a beat when the audience burst out into applause mid-performance, nor showing a flicker of distraction by her role in this monumental event. DiPiazza was realizing a potential that had been begrudgingly dismissed upon her diagnosis. Today, her parents have removed all limitations on what they envisioned for their daughter’s future, and with good cause.
Okay, so that’s all great for the DiPiazza family, but why am I moved to tears by the achievements of a stranger? This moment of achievement—I’ll call it a Jodi Moment—is what we all want for our children. To watch as our children accomplish a dream they’ve held dear is the dream of all parents. I’ve been fortunate enough to have experienced “mini” Jodi Moments as Cameron has mastered public transportation, found and maintained paid employment, and countless other moments that have left me both proud and pleasantly surprised. But seeing Jodi DiPiazza on stage with Katy Perry gave me a glimpse of what it might feel like when Cameron becomes a restaurant owner. Reaching a Jodi Moment, and realizing there’s a Jodi Moment out there for everyone is what keeps me going as a mom.
Now I’m sure there are cynics out there that will question what benefit DiPiazza gained by her performance. Her success in life is no more guaranteed by this event than it was the day prior to her performance. I suppose this is a fair point. But even the most cynical critics, the ones that make judgmental comments on You Tube about the mother’s reaction to receiving her daughter’s diagnosis, must concede that this was a defining moment for DiPiazza. I’ll bet there’s nothing she feels she can’t accomplish. I believe that experiencing defining moments of others makes us that more determined to seek our own defining moments. Our own Jodi Moments may not be witnessed by millions, but that doesn’t make them any less significant. If you were like me and were left reaching for the tissue box during Jodi’s Moment, here’s hoping that you’ll soon be reaching for a tissue again due to your own Jodi Moment.
It was a feeling of euphoria when Cody finally came off the waiting list for services. I felt relieved in such a profound way. But reality soon made itself known.
It’s easy to fall into a trap of thinking that everything is just going to be so much better now that you have the services you have waited for, for so long. While it is a step in the right direction, there are many things which surround this event which may set you up for disappointment and disillusionment if you do not look upon it with an objective eye.
Whether your family member receives day hab services like Cody or services from a behavioral facility, you and your family must consider exactly what you will be getting. Who will be coming to work in your home, or who will be working with you at your chosen facility?
In the world of behavioral and social services, many times the people employed are often young men and women enrolled in psychology or social services programs in colleges and universities. They come to such service providers to seek internships, practicums and employment to gain hands-on knowledge and experience in their fields of study. And often they step into a world where—although they are dealing with individuals they wish to help—cognitive and/or behavioral issues are more complicated than they expected. Many times they find themselves facing the challenges of such conditions which they have only read about in research papers and textbooks, and quickly feel in over their heads.
Such predicaments as this lead to a period of time where they must blindly find their way back to self-confidence and self-assurance. Action plans can be clearly outlined on paper and if said plans were to be implemented with neurotypical people, then all would make perfect sense. But it is not always so cut and dried with individuals who have ASD.
New behavioral health and occupational techs often find themselves taken aback by the very behaviors they are supposed to help manage. The fact is, sometimes it is quite awkward for even the most skilled caregivers to deal with being in a restaurant and having to redirect our loved ones on the spectrum when they are doing things like twirling their silverware because it gives them an escape from the noise of other patrons talking, laughing, young children crying and forks and knives striking and screeching across the surface of a plate. Or when we must accompany an adult individual with ASD to the restroom and prompt them not to drop their trousers to the floor while standing at the urinal. Perhaps they need to distract our guys and gals with autism from the triggers of a crowded store—because if they don’t, a meltdown will surely ensue. But imagine being a twenty-something college student who has never encountered these behaviors before from an adult on the spectrum. A little daunting isn’t it?
As a family, you must also face the fact that for many new technicians, this job is only a stepping stone. They’re looking to gain a foundation for a path that will lead to career advancement. So chances are, they may not be around that long. Anticipate many staff changes to come. In most cases it is just a given it will happen.
Almost every technician has had similar questions of me. “What do you want me to today to keep him engaged? How do you know when he’s getting upset or agitated? What should I do when I’m working with him on life skills and he’s totally disinterested?” You simply have to explain answers to these kinds of questions with a direct, matter-of-fact attitude. If possible, spend time helping that staff get to know you or your loved one so that he can be well equipped to handle any turbulent situation that might arise. Remember that although staff are professionals, you are the expert on your family member!
“Is it time yet?” the filmmaker asked. “Not quite,” I replied. “He should be home in about a half an hour.” The filmmaker and I were waiting for my brother Willie to get home from work, so that we could shoot me having a phone conversation with him. I'd cleared the idea with my parents; now, it was just a matter of waiting for the right time to call home. While we waited, though, the filmmaker made a strange request: Could we shoot a pretend phone call before we shot the real one?
At first, I thought: That will be quite the challenge. Imagining what the other person would say, when they'd say it, and how I would, realistically, respond? Doing all that while acting relaxed, as though the camera wasn't on me? Suddenly, I had a new appreciation for actors. But to my own surprise, I was able to act out the call. In just one take, I role-played a conversation with my mother and brother. Doing so gave me chills, because as I was timing my replies to their imagined speech, I could almost hear their voices in my mind. If I imagined them there, I could conjure their conversation. With Willie especially, it was easy to recollect our typical dialogue; we ask and answer so many of the same questions over and over each week. True, he sometimes surprises me with his replies, but for the most part, I can predict his answers to my questions.
In a sense, my brother and I do follow a script when we speak on the phone; there are only so many concrete topics I can touch on with him before he loses interest in talking to me and hands the phone back to Mom. But is keeping to a “script” such a bad thing? No, especially if it helps him to practice his social skills … and especially if it allows us to have a relationship, a point of connection even though we're far apart. And if there's one thing that being Willie's sister has taught me, it's that words aren't everything. Much as I love words, he's helped me to see that sometimes, words are secondary. Our weekly calls are really about what runs beneath every word, every sentence, every second. And when I talked to Willie “for real,” our conversation followed its usual script … and it made me unusually happy.
After filming had wrapped, I curled up and put on the latest episode of the TV show “Parenthood.” I love “Parenthood” for its depiction of Max Braverman (played by Max Burkholder), a young man with Asperger's, and his older sister Haddie (played by Sara Ramos). Though the fictional characters are different from Willie and me in many ways, their storylines often hit close to home for me. This week was no exception. In this episode, Max is running for student body president, gearing up for a speech on election day. Given that Max has refused to write down his speech, his family members are all concerned about the possibility that he might freeze up and forget what he's planned to say to the student body. Fortunately, Haddie comes to the school to support him.
As they wait together in the wings, Haddie encourages Max by listing his best qualities, including his remarkable tenacity. And she promises him that she'll be waiting in the wings to give him a thumbs up if he gets nervous during his speech. In characteristic Max fashion, he replies that he wouldn't get nervous, but lo and behold, just moments into his speech, he's glancing Haddie's way. She gives him the promised thumbs up … and suddenly, Max starts talking about his good qualities—like his tenacity—and how it's connected to his Asperger's. He tells the crowd of students that having Asperger's makes some things more difficult, but it also makes some things easier—like being tenacious and fighting for what he believes in. (And in this case, what Max believes is that every student should be able to buy food from vending machines.)
Tears filled my eyes as I realized: He's speaking from his heart … and he's following the “script” that Haddie gave him.
Last Tuesday my sister Connie had to have a surgery.
Here's what really gets to us about the holiday season. It's not the way advertisers assault us, though that's troubling.
By the time you read this, I will have returned from a week’s vacation in Florida with my family.
Schedule-based living, however, can be a tricky proposition. On the one hand, a schedule orders the day, the expectations, and is comforting to Madison who has difficulty with transitions....
The search for a postsecondary program for a student like Cameron is not much fun. It’s actually pretty awful.
Last week I had the opportunity to head to Washington, DC to attend the “Autism Speaks to Washington” summit.
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