This is not the first time I've asked this question, nor am I the only person who has asked, but maybe, dear reader, you are the one that has the answer: Does it really have to be this difficult? Are Transition and adult services too much to ask for? Why do I feel like I'm on a Lewis and Clark expedition when it comes to charting my son's options after high school? I realize there have been millions of parents before me who have made this journey, but I feel as though I'm navigating by the stars when everyone else has voice-guided GPS.
The irony is, I'm not sure when I would've realized how blindingly confusing this all is, had I not become a part of Autism After 16. The more research I do, the more confused I become. When I do happen upon a service provider that looks promising, or a government agency website that provides meaningful information, I feel as if I've found an Easter egg made of solid gold. But when I do find such an Easter egg, I'm almost reluctant to to discuss it with anyone, for fear I'll hear, "Well, duh! Who didn't know about that?" I'm quickly getting over the fear of stating the obvious, as I realize there is very little that is obvious.
The reason I'm extra frustrated about the maze of adult services is because we are considering relocating. While relocating is a big decision for any family, for a family with a special needs child in the mix, it makes the decision tree that much more complicated. And when you consider that my son is 17, it adds yet another prickly branch to that tree. What if we move to a jurisdiction that determines that Cameron has actually met the requirements for a high school diploma, and will graduate him next June? That's not what I had envisioned. Don't get me wrong. I'm not trying to milk the system by extending Cameron's high school education in order to extend services being paid for by our local (wherever that may be) school system. You only need to meet Cameron once to know he will definitely not be ready to earn a regular diploma in 14 months. But I worry about moving, and the new jurisdiction having a completely different assessment of Cameron. It's a lot to consider. And yet, you really can't get answers about a potential relocation, because you pretty much have to be resident of the jurisdiction in question to get answers. It's a real chicken and egg scenario.
So why does every state, every county, every school system, every parent, have to reinvent the wheel? The agency function may be the same, but the acronyms never are. (Peruse our state Roadmaps to discover how many acronyms there are just for Vocational Rehabilitation services.) It just really makes me wonder why, when all these agencies are set up with the intent to help, it's so difficult to figure out how to even begin to receive their assistance. And so dear reader, I implore you: As we make this journey together, share what you learn along the way with us. Use the comment section below or our Facebook page to tell us about guideposts you’ve discovered to help you navigate. Sooner or later, hopefully, we’ll make this road easier to travel.
Teens with autism, particularly girls on the spectrum, may be more likely to develop eating disorders than their neurotypical counterparts. While research into this phenomenon is just beginning, the possibility of these conditions co-existing is worth examining. Do parents of autistic teens know the risks? Do the teens themselves? And where is the connection? This is a topic deserving of a book, but, alas, I am only a columnist and can only share some ideas.
Though the correlation between ASD and eating disorders may seem arbitrary at first glance, there is nothing arbitrary about it. Eating disorders are characterized by obsessive-compulsive behavior surrounding food and the body of the patient, often accompanied by body dysmorphic disorder, or BDD. A large number of girls who go undiagnosed with ASD in fact receive their diagnoses after seeking help for an eating disorder, and some 20% of patients diagnosed with anorexia nervosa are found to be (unknowingly) on the spectrum.
Tony Attwood, an expert in girls on the spectrum, has said that because of the ritualized behavior that leads to disordered eating and eventually a diagnosable eating disorder, girls with ASD can obviously be very prone to sliding down that slippery slope. An eating disorder is an obsession that manifests very similarly to a classically autistic “special interest,” and the lure of nutrition, calorie counting, and the seductively vast world of dieting can be fascinating to an autistic, who may only develop the self-hating dysmorphia of an eating disorder as a result of his or her newfound obsession. Add some Aspergian food allergies and sensory issues (making eating complicated to begin with) and Aspergian perfectionism into the mix and you’ve got a patient who fits the typical profile of one at risk for an ED.
Not only are people on the spectrum more detail-oriented, perfectionist, obsessive-compulsive, and obsession prone than neurotypicals, but the very way that autistic people see the world may be an eating disorder risk. It’s commonly understood that autistic people have problems with what is referred to as “zoom-out” focus, and, especially when dealing with people, see the parts of things instead of the whole. Body dysmorphic disorder is marked, and some would say caused, by the patient seeing their individual body parts instead of their whole body. Where a non-BDD patient would look in the mirror and see a face, a patient with BDD sees an eye, another eye, a nose, a mouth, cheeks, etc., the same way an autistic sees a face. The failure to put the pieces together leads to (or can be a result of) focusing on these individual pieces, instead of seeing how they fit together into a greater context.
Ever met someone with a large nose, who hates their nose, when you think it “suits” them? That’s because you are seeing their whole face, how well their nose matches the angle of their jaw and their heavy brows, when they are only focusing on their nose, criticizing its every bulge and curve. This phenomenon is the essence of BDD, and the fact that people on the autism spectrum in a sense come equipped with a dysmorphic view of the world can leave them incredibly prone to self-loathing and body dysmorphia, especially for girls, who are encouraged to critique their bodies in this way.
Boys on the spectrum may not be subjected to the vast physical pressures put on girls, but that doesn’t mean they are exempt from eating disorders, or body dysmorphia. Societal pressure may fuel the fire, or be the catalyst, for an autistic girl, but simply taking an interest in dieting is enough to suck an autistic boy into the same situation.
Now, I’m not saying that autistic people can’t try to lose weight, or can’t learn about nutritional science or become nutritionists or health experts. This has less to do with keeping autistics away from these triggers and more to do with educating autistic children from an early age about their bodies. Many autistics, and many children in general, don’t give much thought to their bodies until they suddenly start changing when puberty hits.
If you are a parent of a young child, know that the solution isn’t to reassure your daughter that she’s beautiful (in fact, praising little girls for their beauty can be incredibly unhealthy for a myriad of reasons) but to teach her about all her body does. Teach her (or him) about how and why people look different, and about the natural variations in the human form, whether it be fat or thin, big nosed or small. Of course, we’re fighting an uphill battle against our culture here, but a child’s first notice of his or her body shouldn’t be when they start to notice they don’t like it.
And if you are an autistic teen (or preteen, or adult) who has started to notice that your waist isn’t as narrow as a woman’s “should” be, check out Natalie Portman in Star Wars to see a beautiful woman without an hourglass waist. If your legs are too big, check out Beyoncé. Even better, book at the people around you on the street or in school who you consider to be beautiful, and find your “flaws” in them. If you have to, stand back a few feet from the mirror and squint. Know that you are not your appearance, and your appearance is more than your individual features.
Now that Cody is finally receiving more hours for his Day Hab program, the politicians are once again talking about cutting funds to state aid. When will they realize that cuts to Social Security, Medicare and Medicaid do more harm than good? More importantly, do they even care?
Cody waited for six years to be off the waiting list to receive services and now is he in danger of losing the services that he has finally been given?
It makes me extremely angry when help is taken from those who truly need it. Yet, our government can spend millions upon millions of dollars on needless and mindless things.
In recent years renovations have been done to federal buildings that have been vacant for years and there are no plans to occupy or lease the space. A six-figure grant was given to a college professor to jam with famous musicians. Another six-figure grant was awarded to a man who created a joke machine. A costume company received a grant to create better Halloween costumes. We bail out banks which are run by immoral and incompetent executives who took that money and paid themselves huge bonuses for doing a horrible job. We bail out the auto industry while those executives took a private jet to the hearings where they were being questioned as to how they spent the money. And scientists who want to explore the velocity at which penguins poop received another $700,000.
Our politicians frequently use government-owned helicopters and airplanes to attend personal functions, such as the governor who used the state helicopter to attend his son’s little league game. At Christmas this year, there were over 100 Christmas trees in the White House. President Obama’s inaugural party was the most expensive yet, tallying in the millions of dollars. Congressmen often take lavish vacations on the taxpayers’ dime. And the list goes on and on.
Meanwhile individuals who have autism in the state of Missouri and many other states struggle to find help. Special Education programs in schools are grossly ill-equipped to provide the kind of speech therapy and early interventions that are crucial to one’s success when a diagnosis of ASD is present. If an individual with autism has limited vocabulary or is nonverbal, they are herded through the system like cattle. Cody was awarded a high school diploma but at one time he was not even eligible for coverage that paid for any kind of treatment that was related to his diagnosis. Thank God that has changed!
For six years, while he waited for services Cody stayed at home with his grandmother who was unable to provide him with the kind of socialization skills he needed so desperately to learn. While during his high school years he had reached a plateau in his progression toward becoming self-sufficient, after high school he was for all intents and purposes on his own except for being provided with meals and a watchful eye with a telephone to call Bill or myself at work if there was a problem. Can we say regression? And there are so many people just like him who have suffered or are suffering the same dilemma.
Bill and I are fortunate enough to have jobs to provide necessities for our son. So I don’t mean to complain about our household financial situation. But we could not afford to pay out of our pockets for the necessary services Cody now receives which we all waited for, for so long. And now Congress is once again talking of cutting social services for those who need them the most! How long will this go on?
It is common when injustices like this arise, for people to say, “You have to speak up.” Well I’m speaking up in a very public way.
All of the concerns I have mentioned in my column today will be put into a letter and forwarded to my congressman, my governor, my senators, and yes … the White House. I’m only one person and so is my son. But if we can inspire more people to do the same, and some of those people inspire more people to do the same, it won’t be long before our legislators are hearing an earful from a whole lot of people who are tired of their loved ones being pushed aside because they have a diagnosis on the autism spectrum. This has to stop!
“That's very unusual,” she said, glancing sideways at me. “Most adult siblings aren't really involved in their autistic siblings' care, or don't want to be. They want their own lives, you know?”
I nodded. I understood and I didn't understand. I was on my way to meet the members of a nonprofit for an interview, and the staffer who picked me up had engaged me in conversation about my experience as a sister to a young adult with autism. I'd shared how Willie was doing, and that my parents and I were discussing how to proceed with Willie's care. (Of course, my parents make the decisions, but I offer help and encouragement whenever possible.)
It seems the most natural thing in the world that I be involved in those decisions, even at a distance. Be it picking up medications or staying with Willie for an afternoon, I've always had a desire to do what I can to help out (that is, except for the periods in which Willie's behavioral struggles have left me feeling angry and distant from him). Perhaps it's because I'm the oldest; perhaps it's because I can see the need for assistance so clearly; perhaps it's just because I love him. Whatever the reason, I can't not be involved.
Later in the day, another staffer expressed similar views, saying that many siblings have already spent a large portion of their lives making accommodation for their special needs siblings, that they've already “paid the price,” as it were. Again, I nodded. I understood, and I didn't understand. The idea that I will likely bear greater responsibility for Willie's care in the future is a daunting prospect at times. And yes, there was a time when I'd have said that being Willie's sibling came with too high a price. (There are times when I feel that way still.)
And yet whenever I feel like I can't afford to witness another meltdown, I remember a wonderful passage from Anne Lamott's novel “Blue Shoe”: “She even thanked God for giving her such a difficult [family member], because she believed that while it had been nearly life-threatening to survive [the relationship], the price she and [her brother] had paid was exactly what it cost to become who they were.”
Strangely enough, the conversations at the nonprofit mirrored one I'd had the previous week. I'd met with a potential copywriting client, a vivacious woman with two daughters. The younger of the girls was at the top of her high school class, bound for a top-notch college on an athletic scholarship. The older daughter was living at a school for individuals with special needs, as she needed constant caregiving. The mother spoke candidly about how much her younger daughter resented her older sister.
My heart ached for their family. I remembered all too well the feeling that Willie shouldn't live with us, that he'd done enough damage to our house, our bodies, our lives. And I realized that my relationship with Willie could have gone down a different road. I could have chosen distance resentment. Instead, I chose to be present to the grief and to the joy of being his sister. Even at a distance, I chose not to remove myself from the life of my family.
What helped me most in making that choice was, paradoxically, to be apart from Willie for a time. In moving to L'Arche—to a life of giving and receiving care—I gained the ability to respond calmly to challenging situations. These moments helped me to stop taking Willie's behavior so personally. I came to see Willie's aggression not as a personal attack, but as a cry for help. Caring for someone who wasn't my brother taught me about how to love and accept Willie as he is, not as I think he should be.
And, thanks to that experience, when I think of the staffer's comment—They want their own lives, you know?—I can say that yes, I do want my own life. That is, an unpredictable, leaving-normal life, one that will always include Willie.
In an effort to meet more people, I recently joined an adult special needs support group which is sponsored by an agency I work with that offers services for me to utilize in my life. At our first meeting, I was pleasantly surprised to see some people from the other extracurricular activities I participate in, but I also had the opportunity to meet and speak to many people I did not know. The group’s first planned activity was to have a dance; something that many in the group have never experienced, including myself.
I missed my prom because I was home-schooled during my high school years, so this dance provided me a good chance to participate in a traditional rite of passage I had missed out on earlier in my life. The event was a prom-style dance with a ballroom floor, a professional DJ, pulsating lights, and a lively atmosphere. I had taken dance classes in the past, but I had never been to a dance like this before.
It took about 30 minutes to get dressed for the dance; I do not put dress clothes on often and my fine motor issues make dealing with small buttons and belts difficult, so I needed a bit of help buttoning my shirt and putting my belt and tie on. I hope to be able to do these things by myself as I begin to wear dress clothes more often. I will have to practice. After I was dressed to the nines, I rode off to the dance with my mother.
When we arrived at the site of the dance, I was surprised by how loud the music was. I had expected that the music would be much quieter, but it was actually thumping throughout the area where the dance had been set up. I have issues with loud noises, but I managed to tolerate the volume of the music without using the ear plugs my mother had brought along “just in case” I needed them. New songs kept playing throughout the night, and everyone had an opportunity to participate in some very fun dances such as the “Macarena,” the “Cha Cha Slide,” and the “Electric Slide.” I joined in for a few dances with my mother and I had a very nice time, but even when I was just sitting, I kept moving to the beat of the music and enjoyed following the rhythm. I do not think I ever stood completely still at any time during the night.
In addition to the dancing, I also enjoyed the food selections available from the buffet set up for us, even trying two new foods—raw carrots and fish sticks. I enjoyed both and am planning on adding them to my diet.
There were also college students that had volunteered to help out by taking keepsake photographs under a traditional archway with flowers. I posed by myself and with my mother. I cannot wait to display them as a remembrance of my first dance.
I found the evening to be very exhilarating, but I did grow tired as we moved up on the 90-minute mark, so my mother and I called it a night. I had a lot of fun, though, and it gave me a chance to have a great time dancing in a way I had never experienced before. I would love to do it again sometime, and I hope our group plans another dance soon. The next time I am at a wedding reception or other formal function, I know that I will now have enough courage to join in and dance the night away. I may even ask a young lady to dance with me!
It seems I'm rarely able to sit down and watch TV in "prime time" anymore. Not since the end of "Lost" have I scheduled myself to be in my family room at a certain time on a certain day of the week. When I hear buzz about what people are watching, I always feel somewhat left out because I'm not following the latest shows. Thanks to modern technology, I've been on a quest to catch up with one of the buzzing shows. Lately I've found myself curling up in bed with my tablet, and streaming episodes of "Mad Men." If I'm NOT the only one who hasn't watched this show in the past, it's a drama set in the early 1960s which follows the goings on of a Madison Avenue advertising firm. It's fascinating. And not just because of the story lines, but because of what it says about society.
The writers of “Mad Men” take great pains to paint a picture of what life was like in the early 60s, to the point that it almost becomes a distraction to the viewer, albeit an entertaining distraction. I snicker at the ulcer patient following his doctor's advice of drinking cream and eating butter, and winding up with a heart attack. I'm taken aback when I see small children riding in a car, climbing from the front seat to the back like they’re running a steeple chase. And the smoking! I worry about the actors' health because EVERY scene has cigarettes prominently featured. Not to mention, these characters drink more during a single workday than I have in the past decade of New Year's Eve parties combined.
Typically, when I am reflecting on "how far we've come," I focus on the evolution of technology. I think about how much easier college term papers would've been if I'd had the Internet at my disposal. Without cell phones, how did my parents ever let me out of the house as a teenager? But this vivid picture painted by "Mad Men" has me thinking about society's evolution beyond just technology. I've started thinking about the evolution of society and its relationship with Autism.
I'm a member of the "Rain Man" generation, where Dustin Hoffman gave us our first glimpse into a "quirky" world. This would be the same generation that received questionable "parenting advice" when looking for answers about "quirky" children. I take some comfort in knowing that today's new mothers are getting meaningful advice from teachers, health care providers, and even neighbors that leads to early intervention. I'll bet legitimately concerned mothers are no longer advised to take a bubble bath to make things better. I'm finding it helps me be more forward-thinking when I look back to see how far we've come. I appreciate the people before me for making my journey easier. And I realize when new studies come out suggesting the blame of autism lies in something the mother did—ate too much, took medication that was prescribed by her doctor as being safe while pregnant, married a man too old for reproduction—I realize one day these studies will also be a thing of the past. Quite possibly the suggestions of these studies will seem as ironic as treating an ulcer with cream and butter. It almost makes me want to fast forward and see how it all turns out. But where's the fun in that?
Last night I was scheduled to work second shift when the Nursing Supervisor came through my unit and ask me to work a double. It was unexpected but I agreed to do so. This meant that I would be working from 3 p.m. to 7 a.m. this morning and then coming home, going to bed for a few short hours and getting up and going back to work at 3 p.m. this afternoon.
I have done this several times in the past and it really hasn’t been an issue. But the last time this happened was a couple of months ago. When I arrived home this morning, I had a disgruntled young man to deal with.
Normally when I work second shift I get home around 12 a.m. I walk in the door, set my purse in the chair and put my keys on the counter. Then I go straight back to Cody’s room and give him a hug and a kiss, tell him I love him, say good night and that I will see him in the morning. Working an unexpected double shift last night threw a bit of a wrench in those works.
On my way home, I called Bill to let him know that I would be home soon. That’s when I learned that I was in trouble.
Bill leaves for work about 3 a.m. most days. Before he leaves he goes into Cody’s room to tell him that he will see him when he gets home. When he did this morning he found Cody wide awake. Upon seeing Bill, Cody said with a disapproving tone, “Mom didn’t come home last night!”
Not only was Bill shocked to find him awake but also to find him so dismayed with the circumstances. I guess we sometimes forget how much attention Cody pays to our routines and the things we say and do.
Cody has always had his own routines. He has a certain order for things in his life. Deviating from that order is just not something he does on a whim. But it’s sometimes rather easy to forget that Cody’s routines also involve our routines. If our routines vary, it can set the tone for a confrontation with him in which he is quite frank about his discontentment and disappointment. While some might believe that would never be a good thing … sometimes it is.
First of all, Cody doesn’t have a mean spirit about things. He’s a very loving young man. So that isn’t an issue. But his emphatic honesty is a good reminder to us that while Cody does need to learn to deal with the unexpected in life, we can’t just automatically assume he is able to do it without explanation. Our work schedules do affect him.
I would not go straight into an extra shift without calling Bill to let him know. If I did, then Bill would be wondering where I was. Before long, he would be tracing my route to and from work to see if my car had broken down somewhere. He would be calling my cell phone in an attempt to find out where I was. And he would be irritated with me when I told him, “Oh! I had to work a double.”
Not letting Bill know of a schedule change would have disrupted a routine he expects. This would have him guessing with a million questions running through his mind. I would have caused him to worry and then get frustrated and aggravated that I didn’t have the consideration to call and let him know what was going on ahead of time. So why should I expect Cody to feel any differently?
When I came home this morning, Cody sat with me and drank his coffee. We talked and I could tell he was not happy with me. I asked him if he slept alright last night. Quietly, he said with a frown on his face, “Didn’t sleep well last night!” I felt so bad. I began to apologize profusely. Now he was going to be tired all day and I may have just set him up to have a rough day with Stephen, his day hab tech. How could I make this right?
The moral of the story here is that even I need to remember that changes in my plans affect Cody also. Even I have to remind myself from time to time that Cody’s feelings may be at stake by things I say and do. Just because Cody is not always as vocal about things as the rest of us doesn’t mean he deserves any less consideration than anyone else. His thoughts and feelings are important to me. That’s something I never want him to forget!
On the surface of things, now might not seem like the best time for me to be thinking about my brother's work life. Willie's been struggling with self-injurious and aggressive behaviors, but I'm thinking about his work just the same.
I'm thinking about it in part because it's problematic, and in part because I need to believe that someday, Willie will be free from these rages, able to pursue a more fulfilling work experience. I long for him to use his talents, to grow his gifts. Yet even so, I realize that his difficult behaviors are not the only thing standing in the way of that dream.
My family wants more for Willie in his work life. He's over-qualified for his current job, which consists of contract work from local businesses. His tasks are repetitive; he shreds x-rays almost every day. While my family is thankful that Willie has any job at all given his difficult behaviors, we know that, given his skills and talents, he could do much more.
This being the case, my parents strive to provide Willie with a full extra-curricular life. He swims laps at the YMCA, goes bowling with a league, lifts weights, and attends movie nights and respite weekends. And earlier this year, Willie and my mom wanted to volunteer for a local animal shelter together. (Willie loves dogs, and can identify any dog by breed in seconds.) To make a long story short, the volunteering didn't happen. The shelter wasn't willing (or able) to make accommodations for mom and Willie to volunteer.
It was unfortunate, but it was also no surprise. Many businesses and nonprofits aren't willing to make the kinds of changes (large or small) required to welcome adults with special needs into the workforce. Few businesses are willing to do what Steamers Coffeehouse does; in the words of founder Athan Miller: “We have to build inefficiencies into our business model.”
Our culture worships efficiency. We bow down to bottom lines. And the thought that everyone deserves a shot at a fulfilling work experience seems wildly idealistic given the current economic situation. There are definite societal prejudices against people with autism and other disabilities, but there is also a sense in which the entire American workplace is a system ill-prepared to serve the needs of its workers, with or without special needs.
Our workplaces aren't more inclusive because welcoming people with special needs demands a willingness (and ability) to design a career experience around an individual's specific set of gifts and needs. Few workplaces are willing do that for any of their workers.
Most businesses in the United States don't allow themselves to believe that traditional models should—or even can—change in response to the changing needs of its workforce. Consider: Businesses still operate on the 9-to-5 model that originated during the Industrial Revolution … and if they don't, the hours are even longer. Unlike many other first-world nations, the United States doesn't allow for “luxuries” that would help to keep workers and their families healthy (things like significant vacation time, sabbaticals, reasonable maternity and paternity leaves, or free access to healthcare). Far too many people feel like square pegs in round holes. They face exhausting commutes, mundane tasks, and tangled bureaucracies. Without strong mentorship, their talents go ignored. If they complain, they're told to be grateful that they have a job at all.
But what if welcoming individuals with special needs is exactly the catalyst that could transform the workplace as we know it? What if the kinds of changes we'd need to make to welcome such individuals would actually benefit all of us?
It would take a great deal of patience, thought, and planning to effect such a change. But I have to believe that it can be done. We all have something to offer one another. When we cling to rigid structures and outdated, isolating policies, we are missing out on the gifts that people with special needs could bring to our workplaces.
And, like so many others who know and love someone with special needs, I'm willing to work to make that happen. Why? Because I hope against hope that my brother can—and should—do more than shred x-rays.
Being an Aspie means having a few pet peeves. One of them is people making all sorts of grand pronouncements without knowing diddly-squat about how we actually live.
Yes, we do things that people find offensive but (arguably) shouldn't. Stimming, talking bluntly, laughing when no one else is, that sort of thing. News flash: So do many NTs. Intolerance and oversensitivity is an equal-opportunity game.
So we'd like people to be a bit more tolerant. Hooray for tolerance!
Some people—especially parents of Aspies—take it a couple of steps further, and insist that we're not really disabled. Paraphrasing Hamlet—you may remember, the guy who couldn't make up his mind until it was too late—they say that nothing about being an Aspie is bad, but other people's thinking makes it so.
Hmmm … so all we have to do is wait until everyone else gets around to liking and accepting us? No problem, I'll just bring a lunch!
Look, I know you hear all sorts of complaints about your children—including some complaints that are uninformed, stupid or even bigoted. Sure, we could use more enlightened people … just ask any African-American. Or any Jew. Or any poor person. Heck, we all run into pompous, presumptive prigs every now and then.
Let's assume, for the sake of argument, that every single personal complaint anyone has ever made about an Aspie's behavior is unjustified. Let's also assume that every single Aspie is perfectly unselfish.
As Aspies, we tend to need stuff like:
And so on.
Why would we need to ask for these things in the first place? Why aren't they already features of normal life? Because they cut into stuff most people prefer. Like being able to summarize something in a few general words and having it understood right away, flexibility and “turning on a dime” (especially these days), efficiently using scarce space for many students and workers who aren't exactly monks, harmonizing people through dress standards and uniforms, fluorescent lights, etc.
This doesn't mean we shouldn't ask for help. It just means TAANSTAAFL—There Ain't No Such Thing As A Free Lunch. The cost can be shifted but someone will have to pay it, in terms of money, time, group morale and the like.
And if we are unselfish, then we should care about what we put other people through on our account. Yes, involuntarily (at least to some extent) on our part. That's what makes it a disability.
So when you focus only on those who refuse to accept us, that's a bit like saying that paraplegics aren't really disabled, it's just that society happens to like people who can move quickly on their actual feet.
By all means, let's keep in mind all the things we can do well—maybe even on average a little better thanks to some Aspie traits like attention to detail, persistence and loyalty. And yes, parents, please of course love us and protect us with all your hearts—most of you will do that anyway.
The model here should be a lioness—not an ostrich. We can put on ruby red slippers and click our heels three times while chanting “Autism is a difference, not a disability” all we want. At most, we're only fooling ourselves.
Growing up, I always had a vision for what my adult life would look like. I would have a career, I would fall in love, get married, and have children—LOTS of children. I would provide those children with the opportunity for the “normal” childhood that eluded me. Of course, not knowing at the time that “normal” was beyond the realm of what I was wired to attain, I did not necessarily have a plan as to how any of this was going to happen. But somehow, I knew that it would. This certainty, I think, in retrospect, stemmed from my tendency to either trust wholeheartedly without any rational basis for my trust, or not trust at all, even when all evidence pointed in the opposite direction. I tend to look at this now as part of my Aspie makeup that can either be used for good or evil!
Fast-forward from the dreams of childhood to the adult world, present-day. I am not sure if I would have been better off knowing my place on the autism spectrum before I started this whole “adult” thing some years back. In looking at the life I have right now, first and foremost are my children. They are everything to me, and had life not played out as it did, their very existence could be called into question. So in hindsight, although I know unequivocally that much of the recent collateral damage my autism and related … issues … are generating would have been greatly reduced had I recognized my strengths and weaknesses at an earlier age. Had I known that my wiring made certain emotions difficult if not impossible for me to express—or even feel—or that my ability to read nonverbal cues would be put to the ultimate test in the parameters of a marital relationship, perhaps I would have made different choices. Had I started sooner in my quest to understand what makes me tick and how to use those Aspie powers for good instead of evil, would I have reached a point where I would not have been so set in my ways that some fundamental, necessary changes and choices were beyond my grasp?
I could quite simply drive myself over the edge with “what-if” questions, and much of what I have learned about how my brain works in recent years involves seeking to minimize the amount of collateral damage I am inflicting on myself. So rather than punish myself for not succeeding in some of the areas I thought would be oh-so-perfect when I was a quarter-century younger (give or take) I would much rather use what I have learned about myself to keep history from repeating itself. Another lesson I have learned of late is how very many of the choices I have made, actions I have taken, and words I have and have not spoken, are absorbed by the young people in my life. So in the midst of what might look like chaos, sanity is struggling to emerge victorious, as I enter a new phase of my development as an adult on the autism spectrum knowing that regardless of whether I can or cannot trust anything else in my life, I can trust myself. And if that is a lesson I can pass on to the young adults in my life, then I truly will be using my Aspie powers for good instead of evil.
It's Spring Break in our household. While my husband has been away on business, the kids and I are "enjoying" a stay-cation. It has been a learning experience, with me being the one doing most of the learning. Just the other day I was eloquently educating my daughter on her deficit in the area of frustration tolerance, to which she replied, "Well I don't have a very good role model!" Ouch. Did I mention she's 8? But I can't argue against her point. I admit that I am very poor at hiding frustration. And I'll also admit that I'm not always the best role model for my children. Case in point, while driving my children around town, I often feel compelled to point out that my own vocabulary and gestures aren't exemplary defensive driving skills. Thanks to my 8-year-old, I am suddenly very self-aware regarding how much influence my actions have on my children, for better or worse.
I've also started to think about how my children are influenced by unexpected sources. I received a call the other day from Cameron's boss at his pizzeria internship. My mind was racing as to why he would be calling: Has Cameron's desire to work extra hours during Spring Break caused him to become a nuisance? Has Cameron been eating too much while on the job, and I now owe hundreds of dollars in pizza fees? As it turns out, his boss was calling because he was concerned with the amount of soda Cameron was drinking, and felt it was resulting in Cameron's increased hyperactivity. (For the record, we do not have soda at home, and I have told Cameron that soda every day at work is not good for him.) How great is it that a man who has made his living selling pizza and soda to college students is genuinely concerned about my son's overconsumption? And how great is it that a person whom I've only briefly met has reiterated to Cameron the same lesson I try to teach at home? This is the kind of role model I am looking for! Incidentally, when I told Cameron his boss had called about the amount of soda he had been drinking, Cameron's response was, "Well, I've stopped doing that." I asked when he had stopped, to which he replied, "Today." Huh. What a coincidence he stopped right before I had a chance to tell him to stop.
I've also been thinking about the role models Cameron sees on television. He loves those kid networks' tween-targeted sitcoms. You know, the ones where the besties are always helping each other into or out of trouble? Cameron seems enamored by these characters' relationships, and even follows the actors' real life relationships as closely as Google allows. Now, if only he would take the leap into reality and start modeling some of these relationships himself. Heck, if he did that, I wouldn't even be bothered by the fact that his best friend was in a wizard competition and accidentally turned our house into a toadstool! I just so wish Cameron was interested in being around other people, and that other people were interested in being around him. While most parents of high school-aged children worry about their children falling in with the wrong crowd, I worry about Cameron never falling in with ANY crowd.
I'm thankful for the positive influences Cameron comes into contact with on a daily basis. Sometimes I'm somewhat taken aback by how many of these role models come from outside of the Autism Universe. You come to expect special educators, social workers, therapists, and the like to provide the necessary positive feedback. But role models need not be a segregated population. Maybe mainstream role models will someday lead to mainstream socialization.
Recently I wrote about how Cody’s fear of thunderstorms used to wreak havoc with anyone in the house who wanted to sleep through the night. While we had solved the problem with an airbed in our bedroom, not even this solution could mitigate the events of Tuesday night, two weeks ago.
It had been storming all day. The rains had been particularly heavy and weren’t due to stop anytime soon. Putting up the airbed was a given.
Cody was very tired and wanted to go to bed early. It was around 9 p.m. when he climbed under his covers and said his prayers. About 30 minutes later, Bill got up from bed and yelled out to me. “Ugh! We’re flooded!” Our sump pump had quit working.
In spite of the rain rapping on the roof and windows, and the accompanying thunder and lightning, we had to have Cody go upstairs to his room. He climbed out from beneath his blanket, put his feet into two inches of cold ground water and sloshed his way up the stairs to his bed. While he did not sleep that night, there was no lamenting as there would have been before.
Bill and I worked through the night, each of us sucking up water with a shop vac. We hauled out water soaked pieces of furniture. Lights were on upstairs for us to see. I could only imagine the thoughts that might have been going through Cody’s mind at that point.
The next day, a water extraction crew came and began pumping water with a very long suction hose that lead out to a large tanker truck. The noise and commotion was deafening. While Cody took a curious interest in what was going on, there was still no complaining.
Next, the crew began hauling out large black bags of wet carpet. Cody quietly watched, studying their every move. They brought in many large fans and two huge dehumidifiers and placed them throughout the basement. When they turned them on it sounded like we were in a wind tunnel.
After the crew left, Cody followed Bill and me downstairs. Nothing was as it had been before. The sofa was piled high with books and other items. The furniture was strewn about so fans could be placed near the walls. The floor was bare concrete and still damp. Things had been piled into laundry baskets. The bathtub was muddy from emptying the shop vacs when they were full. The vanity top was dirty from where we had put our hands to brace ourselves to keep from slipping and falling. And these strange green, noisy machines were everywhere.
Cody walked through the basement and surveyed the aftermath of the flood with quiet wonder. A large part of his life was suddenly changed. Nothing looked the same. Still there were no questions, no remarks, no tantrums, no tears, only silent assessment of the situation.
Over the coming days there were trips to look at new carpet and vinyl. Cody liked being in the store. There were many different samples of carpet he could touch and feel. He paid special attention to the high pile variety. He seemed to like the way it felt on his open hand. He took great pleasure in roaming through the store, making sure to leave no area untraveled. We asked him what he thought about putting new carpet in the basement. His emphatic reply was, “I like it!”
Contractors came and went and Cody had no protests. He seemed to investigate each person with great cuirousity.
Soon the carpet and vinyl was down and now Cody revels in taking off his shoes and socks to walk barefoot across the new floors many times a night.
We are now nearing a finishing point. Had this happened three years ago, Cody’s reactions to this uprooting of normal life would have been tumultuous at best. But throughout the whole ordeal Cody had no nervous tics, no hitting his head out of frustration, no negative talk, nor any outburst of any kind. Thanks to years of consistent coaching from Bill and me, and now the positive influence his new tech, Stephen, is having on him, Cody is learning to adapt to change and overcome adversity. He’s learning how much easier it is when you learn to go with life’s ebb and flow.
Though Cody is now 25, he’s still making progress and he still learns new things, every day. Young adults with autism have the same curiosity as neurotypical individuals and sometimes even more so. They have the desire to learn. And it is crucial that they have the kind of support they need to continue to learn and grow all throughout their lives.
This is one of those columns that I never want to write. These are the stories I wish I didn't have to tell. But, of course, those are the ones that need to be written.
As I wrote in last week's column, this visit home to my family started off with a difficult evening. The days that followed, however, were peaceful. The time passed quickly, and soon it was Friday, the day Willie was scheduled to begin his respite weekend. Every few months, my parents apply for Willie to receive a spot on a supported weekend. He goes swimming, sees movies, and spends time with other young adults with special needs. My parents, in turn, get time off from 24/7 caregiving, and help foster Willie's independence as well. Willie enjoys the weekends, and his behavior tends to be excellent when he's away.
When Mom and I drove Willie to the hotel, he seemed fine. Seemed, of course, is the operative word. We talked and laughed on the 40-minute drive, trading inside jokes and high-fives. When we arrived at the hotel, Mom asked if I'd like to come in, but I declined, thinking that it might be easier for Willie to transition to the weekend if he could say his goodbyes separately. As we stood in the parking lot, I gave Willie a hug and told him that I loved him and was proud of him. I watched him walk away, and I thought how amazing it was that my “little” brother was going away for a weekend, that he'd be 25 in a month.
Yet as I was sitting in the car having these proud older-sister thoughts, Willie was on the verge of a meltdown. The weekend registration and check-in process was tedious; to hear my mom tell it, Willie grew more and more frustrated and tense the longer they waited. That, I could understand; as I read my book in the car, I felt my impatience rising as well, wondering what was taking so long.
Little did I know that, as I waited, Willie was responding to the delay by biting himself, striking at mom, hitting her and knocking her to the ground. Aides stepped in to help, but not fast enough. By the time my mom returned to the car, she was shaking. She'd hit her head on marble, but the shock of Willie's outburst mitigated the physical pain. She was more upset than hurt, more distraught than injured.
The questions spilled out: What had caused this latest episode? What could have been done differently to prevent it? These were logical questions that opened the door to more haunting ones: Why does Willie lash out at us? What happens to his mind and body when he has these “rage blackouts”? I could feel the guilt and pain behind these questions, and I tried to hold them with as much compassion as possible.
But I felt terrible, too—how could I have not been there to help? True, Willie had seemed calm and collected in the car … but I should have known how quickly that can change.
I couldn't answer the questions that weighed on both our hearts; I don't know why or how Willie changes so quickly from hilarious brother to out-of-control aggressor. I couldn't give my mom the answers we both wanted to hear. What I could tell her, though, was that she's an amazing mom, that she's an inspiration to me. She's a significant part of why I am not afraid of having a child with autism; she and my dad have modeled love and patience in extremely difficult situations. They are brave and kind and good, and if Willie has any chance of overcoming these behavioral struggles, it will be because of their help, their persistence, their support.
It's easy to get angry at Willie when he strikes out. And yet it's also impossible to stay angry at Willie, because during and after his episodes, he is clearly in pain. He's causing suffering because he is suffering. And it is my desperate hope and prayer that we might, somehow, help him to be free of the pain that he carries.
Last Sunday, I had something that I have not had in a very long time. I had a day of rest. Well, almost. It was not entirely a respite from my usual college work; I still had a few writing assignments to work on, including a group project which required a lot to complete. I did, however, get some welcome hours off in the morning and during the evening to let my mind rest. There has been very little time for rest during this semester, and I especially valued the free time I got during that day.
In the morning, I expected I would have to do some schoolwork, but I was surprised when my family instead went out shopping for groceries. I was a bit thrown by the change in my schedule because we normally try to take such trips during a weekday when there are not as many other people out. With my sensory issues and spatial processing problems, shopping itself can be a challenge for me. Also, it is my responsibility to push the grocery cart—a simple thing for most people, but not for me. So, my concerns regarding the schoolwork which I had yet to complete soon transferred to worrying about pushing the grocery cart instead. I have trouble navigating the narrow aisles and judging distances between me and other people and their carts. I also have trouble coping with the noise in a store even on a slow day, so when it’s a busy time, I really have to concentrate and stay focused on what I am doing and what is going on around me. My parents stay close so that they can help me navigate around other people and any other obstacles that pop up in front of me by holding the front of the cart and pointing the way for me to go as I need it. With their help, I usually do just fine. They have explained to me that it is important that I learn to do my shopping under all kinds of circumstances. We do shop repeatedly at the same stores and they make a point to teach me the layout of each of the stores so that I am more familiar with the location of specific items that we use. Three stores in three hours and we were done. With that task done and a new book in hand, I relaxed in the car on the way home which provided me a small window of ease knowing my school work awaited me.
I worked for a bit on my writing assignments in the afternoon. The major objective for the day was putting the finishing touches on a proposal for a research project. This proposal was a very different form of writing than what I am normally used to doing and because it was a group project and I had to collaborate with three of my classmates via the internet to complete it, it was a challenge to finish. We worked long hours on it, and I had to really concentrate on my communication skills so that I was clearly understood by everyone involved as I have chosen to accept the position of group leader because I feel it is an opportunity for me to step outside my comfort zone. I have never had an opportunity to work in a group situation academically before because of my being home schooled, so I wanted to challenge myself with this project. I was glad to finally see it come together.
After working on this assignment and some others for a few hours, the evening was capped off by going to my best friend’s house in order to watch wrestling. We had actually arranged my visit some time before, but I had not expected that it would come in the midst of an especially taxing work period for me. This break was greatly needed and enjoyed. I have been to my friend’s house quite a few times now, but it took me a while to learn where everything was in his house. When I am in a new environment, I want to learn where all of the important rooms and objects are right away so I can navigate around without too much trouble. My friend and his family have helped me become acquainted with their home, so I am very comfortable there now. So, for the second time that day, I was able to take my mind away from schoolwork and simply enjoy a few hours away from my responsibilities. My friend and I both enjoy watching wrestling, and it is usually one of the first things we talk about whenever we are together. As we watched the show, we cheered and jeered the various wrestlers, we discussed what was happening on the show and in our lives, and we forgot about our worries for a bit. It was one of the happiest times I have had in quite a while.
I understand the necessity of taking a break when I am overwhelmed. I try to concentrate on one assignment at a time, but sometimes my mind wanders and I think about everything that is coming due at once and it overwhelms me. This is when I need to stop my work and take a break. Breaks help me refocus and then I can get back to my work.
I have less than eight weeks left in my last semester, and will be spending most of the remainder of my time concentrating on completing my school work. From now on it will be what my parents call “crunch time.” That’s alright with me. I will take breaks when I need them and finish my college career.
It is always an expectant trip. We leave around 10:00 a.m. for the 58-mile drive to have lunch with my daughter, Madison.
Although I finally learned to drive from my wheelchair a little over a year ago, Pat, our family caregiver for seventeen years, is my “chauffeur” for our weekly visits. (In 1997 when Madison was four years old, I was paralyzed by Transverse Myeltis, an extremely rare inflammation of the spinal cord that began as the flu.)
Each Tuesday is the same—yet different. We leave at the same time, eat at the same place, and even order the same food. Yet, we never know which Madison will greet us. Will it be the “Happy Madison,” with the bright smile and dancing eyes who works hard to stifle her giggles? “Hey, Mommy!” this Madison will boom with her robust Barney-the-Dinosaur voice. Although nineteen, Madison has deep purple dinosaur roots and still accents her limited speech with octave-ranging pitches from Barney's baritone to Baby Bop's soprano. At other times, however, those same voices can set off an angry tirade or behavioral episode.
The “Happy Madison” will skip out to the parking lot to see me, kiss me on the cheek, and give me her famous light touch hug as she draws her head to mine and stares eyeball to eyeball as if she’s making sure that I’m “in there.” Once buckled in the van, this Madison may break into song—a Mary-Kate and Ashley Olsen favorite like, “Brother For Sale.” She seems to enjoy not so much the lyrics, but rather the video’s frame-by-frame images she so readily runs and repeats in her mind. And if this “Happy Madison” is particularly joyful, she may rock the van with her exuberant singing, swaying side to side like the folks in that classic cola commercial about teaching the world to sing. Each week, I hope this is the Madison I will see.
Sometimes, however, her autism rules and robs her of the words that the rest of us rely on to convey our thoughts and feelings. Her self-expression is reduced to behaviors that require interpretation and sometimes intervention, testing our best efforts to respond and comfort. So with our emotional shock absorbers in place, we look forward to seeing my Madison, and sharing a meal that promises to be a special memory—no matter which Madison greets us. Like most whose lives and journeys have been touched by autism, we hope for the best, but prepare for the worst. And always travel expectantly.
I'm feeling a little blue. And sadly, it has nothing to do with being in the spirit of “Light it Up Blue.” Last week's report from the CDC has me filled with dread. Whenever news such as this comes out, the tendency is to try and find a bright side to the situation. Such is the case with the Wall Street Journal’s article entitled "The Upside of Autism." The author, Jonah Lehrer, reports on a study conducted at the University College London in which adult participants with autism outperform nonautistic participants when it comes to tracking letters on a computer screen. Lehrer also points to the existence of savant skills in some autistic people and Temple Grandin’s success as examples of the good to be found in autism. I wholly understand the need for a feel good moment in this sea of autism news. It’s a feeling very similar to that lift you get upon reviewing psychoeducational diagnostic testing results and discovering a sub-test with better scoring than expected. However, in my current Eeyore state of mind, I have a hard time finding any real world value in the examples presented in the article. I would have felt much better if Lehrer not only hypothesized about the marketability of these skills, but provided widespread examples of positive employment outcome based on them.
With the definition, frequency, and incidences of the diagnosis of autism subject to change, one thing hasn't changed: The autism population needs supports beyond typical school-aged years, and this applies spectrum-wide. Surprisingly, those on the high end of the spectrum have been shown to struggle more as adults than those on the other end of the spectrum. The Simons Foundation Autism Research Initiative (SFARI) website published an article by Deborah Rudacille which highlights studies of autistic adults. One study suggests that “even individuals with normal intelligence and language abilities struggle to fit into society because of their social and communication problems.” Lack of adult services for this “high-functioning” group and social isolation are major contributors to the challenges they face. This population will not reach their fullest potential without help and that help doesn't stop at age 18.
My son has only had a diagnosis with the word "autism" in it for a few years. The next round of diagnostic testing may well come back without that word in it. But a rose by any other name is still a rose. It's not as if a change in diagnosis affords me the opportunity to wipe my hands and declare my work to be done. As parents, we have to learn on the job, and evolve our skill set as our children evolve. This is true for all parents, but never more so than for the parent of a child with autism. Just as we ask the world to be aware of us and our children today, we ourselves must stay aware. Aware that future is unknown, but we should prepare for the worst and expect the best.
Yesterday, the Centers for Disease Control released new figures regarding the incidence of autism among children in the United States. That figure—repeatedly referred to as “staggering”—is 1 in 88. One child out of every 88 in this country has an ASD diagnosis. There will be a lot of discussion regarding what this means in terms of increased incidence versus increased diagnosis, with the CDC noting that it’s likely a combination of the two.
In addition, on Wednesday Autism Speaks released findings of a study conducted by researchers from the London School of Economics and the University of Pennsylvania that examined the cost of autism to society. These investigators put the cost of autism at $126 billion per year in the US and £34 billion per year in the UK. The study estimates that an autistic person in the US who has an intellectual disability will need care over lifespan adding up to $2.3 million; caring for someone with autism but without an intellectual disability totals about $1.4 million over lifespan. (It’s worth noting that these calculations were based on the prior CDC report that 1 in 110 children are diagnosed with autism in the US.)
I’m going to leave the discussion of incidence versus increased diagnosis—as well as what causes autism—to others. Rather, I want to focus on what this news means for families already living with autism whose children, like all children, grow up in the blink of an eye. Those same families already seeing available resources dwindle—both fiscally and in terms of service availability.
There is a tendency to think that an increase in prevalence means that an increase in government spending must necessarily follow. That if we push hard enough at the government, someone will provide, because there must be the money somewhere.
And while we will hopefully see increases in government spending as a response to the CDC announcement and effective advocacy, we as families need to understand, really understand, that there is simply not enough money to go around. Not at the level that many families need.
At Autism After 16, we hear from families on a daily basis who are stunned at the lack of resources available for their adult children. We cannot say this loudly enough or strongly enough: You must be diligent in pursuing existing public resources, especially while your child is still entitled to special education services. You must carefully plan how to combine public supports with personal resources. It is crucial to budget for lifespan. You must think carefully and clearly about how much you will need to help support your autistic child throughout adulthood. While many people are trying to develop adult service models that work, and even more people are diligently trying to convince policymakers to prioritize support for autism research and services, you cannot assume that your child with autism will be employed at a level that will allow him to support himself or that publicly funded supports will be sufficient.
We are not trying to be the voice of doom and gloom at AA16. We are trying to be the voice of reason. We firmly believe that working together, families, communities, advocacy organizations and policymakers can improve the quality of life for people with autism. In fact, we spend much of our time and energy trying to locate and analyze successful and sustainable models of service delivery that can be replicated across communities. But making these models a reality will take a concerted effort. An effort based on how to do more with less. And it will take time.
Autism carries with it the need for tremendous support, from early detection and intervention, to individualized public education measures, to supported employment and adult residential options. Until we discover how to actually change the prevalence numbers, we must be wise about working with the dollars. We cannot afford to be wasteful, publicly or privately. Because it takes more than a village to raise children with autism. It takes a village with money.
To paraphrase Tolstoy, happy homecomings are all alike; every unhappy homecoming is unhappy in its own way. However, I'm not sure how to categorize this week's homecoming, as it was a strange mixture of both.
This past Monday, I arrived at my parents' home. After welcoming hugs, my family enjoyed Chinese takeout by candlelight. Willie included me in his mealtime prayer, giving thanks that I had come. Afterward, my father lit a fire, and my mother got out the Christmas peppermint tea she'd been saving especially for me. In short, it was an idyllic first night home, and I didn't need to be told to appreciate it. I was soaking it all in, delighting in the comforts of being with my family.
And then Willie started rapping out an angry rhythm with his hands. Our parents coached him to take deep breaths. Ordinarily, this helps him to de-escalate. On this night, however, Willie wouldn't calm down. I could feel a knot starting in the pit of my stomach, and I tried to take those deep breaths myself, hoping against hope that it might help Willie to calm down, too.
It's frightening how fast Dr. Jekyll can give way to Mr. Hyde. Instead of deep breathing, Willie bared his teeth and swung his arms at our mother, tore apart a book he'd purchased with his own money, spat, bit his own shoulder, and hit our father. He was out of control. My mother whispered to me that he hadn't done this in a long time, and I believed her; when my husband and I had come for a visit in January, we'd enjoyed an entire week of peace with Willie.
And then, as Willie's anger dissipated, his sobbing began. He always cries after a meltdown, and I can never decide which is worse: the raging brother, or the mournful one. The tantrums can be terrifying, but the weeping afterward … if despair could be a sound, it would be that sound. As I listened, I found myself drawing nearer to the fire, trying to warm some inner part of me that was freezing cold.
Eventually, his sobs quieted, and I went to sit with him. I didn't know what I'd say or do, but I couldn't leave him all alone.
Coming to a crouch beside him, I said, “Hi, Willie.”
“Hi, Caroooo-linnnnneee,” he said. Everything he says after crying sounds like a muffled wail.
For a time, no words came. I just patted him on the head, marveling at the soft thickness of his hair, how like mine it is. I moved my hand gently, hoping to soothe him. And then I knew what to say.
“Willie, you know, you're the only brother I have,” I said.
“Yes,” he said.
“And I'm the only sister you have.”
“So we have to be kind to one another, okay? We have to be kind.”
“I want to be kind!” he said, and even though I knew it was a partial truth—that a part of him also wants to be destructive—I believed him. Because at that moment I was feeling all the separate parts of me, too … all the strange contradictions that one person can carry.
When it was time for bed, I walked to his room and stood in the doorway.
“Goodnight, Willie,” I called in.
“I love you, Willie.”
“I love you, Caroline.”
How strange it was, that I could hold, simultaneously, fear for him and acceptance of him as my brother. The next day, I found a quote from Tolstoy that touched on the wonder I felt at that moment: “... if it is true that there are as many minds as there are heads, then there are as many kinds of love as there are hearts.”
Being Willie's sister means learning a new kind of love, being a part of a new kind of homecoming. It is by turns challenging and simple, bitter and sweet. But it is ours, and somehow, inexplicably, it is enough.
By now, you may have heard of George Hodgins, an autistic man whose mother murdered him and then killed herself.
People are saying that George's mother simply broke under the stress of caring for an autistic man. Naturally, that has some autistic advocates up in arms: How many mothers of autists (people with autism) and of Aspies have struggled and never even considered killing their children?
Even the idea that George's mother could have used more support upsets many activists. If we use this argument to try to get better funding for things like respite care, mental health services, more counselors to shorten waiting lists for services, more teachers' aides in classes to help students with special needs, etc., aren't we saying that it's a bit more OK for mothers of autistic kids to kill them if the stress becomes too great?
One thing to keep in mind when trying to understand our feelings on the subject: As a group, we autists and Aspies have been disproportionately bullied, ostracized, attacked verbally and even otherwise by teachers and others in authority and in many other ways made to feel excluded and rejected. I'm no exception. I've had my jacket and gloves stolen (always one glove—the idea is to show that they don't like me and aren't trying to get something for themselves), been spit on, punched and more. To this day, every time I have to take more than a second or two to look for something like a winter hat or glove, I flash back to my childhood.
And if we had a nickel for every time we were told that our behavior had provoked the bullying and made it “more understandable,” we could retire. (Heck, those of us who are of age can make it into a drinking game!) This stuff really grates on us because it sounds like blaming the victim. All too often, it is code for blaming the victim in a really discriminatory way—especially since people tend to be so vague when saying how we “provoked” the other person's jerkitude. (Maybe they were vague because they felt we should “know better.”)
That goes a long way to showing why many autists and Aspies are having conniptions over the very suggestion that anything besides Elizabeth Hodgins' own resolve to behave decently could have saved George Hodgins. Even though no one has even claimed that he did anything “provocative.” Many autists and Aspies feel that even focusing on Elizabeth Hodgins' desperation implies that an autistic child is a curse.
Yes, of course sane people are responsible for their actions. And obviously George Hodgins bears no blame whatsoever for his own murder. That doesn't mean that changing conditions doesn't change behavior. For example, when unemployment goes up, so do various crimes—including homicide. Does that mean people aren't really responsible for obeying the law and being decent? No. Would helping more people get and keep jobs reduce crime (other things being equal)? Yes.
George Hodgins' mother is, sadly. only one example. We can learn from these horrible acts to emphasize that everyone must do what's right even when it's difficult—and to push for support and resources to help people avoid these terrible dilemmas in the first place. And I'll bet that in an alternative reality where Elizabeth Hodgins never shot her son, and he somehow knew he was still alive because she got the help she had needed ... he wouldn't mind one bit.
I did lunch with ladies who lunch last week. They all have children around Cameron's age. But instead of going to a topnotch private school for children with special needs, their children go to a topnotch private school, period. Wow. It was like our children weren't even the same species. Their upcoming spring breaks consisted of college road trips, and those roads were lined with ivy, if you get my drift. There were lots of congratulations going on around the table for fellowships won, and discussions about travel itineraries for these fellowships—all in Europe, of course. Now, you may be reading this and getting the impression that I am envious. But it's not envy that I feel. It's bewilderment in the vast differences between their 17-year-olds and my 17-year-old. When these women realized that I too have a 17-year-old, their reaction was, "Oh, so you know what it's like to have a teenager." And I would nod, and they would nod, but I have no idea what it’s like to have a teenager like theirs, just as they have no idea what it’s like to have a teenager like mine.
With the exception of two years in Amsterdam, Cameron has been in a segregated special needs environment for his entire education. Special needs kids really annoy Cameron, so to say that friendships are a challenge for him is a major understatement. I've had this little pie in the sky idea that Cameron could go on to a postsecondary setting in a fully integrated environment. Maybe a community college, or even a four-year school in a small college town, where he could integrate with his neurotypical peers. He wouldn't be a degree seeking candidate, but would experience the "real world," with fewer supports, and possibly fewer annoyances. In addition to developing employable skills, I feel it crucial for Cameron to develop social skills. I don't expect him to rush a fraternity and be the life of every kegger. I just think, after all these years in a segregated setting, he really needs to be in the "real world." And when I talk about social skills, I mean that I'm more interested that Cameron is able to blend in than I am interested in the number of Facebook friends he acquires.
So now I come back to my first paragraph and try to reconcile what I want with what is reality. Am I just smoking from the wrong end of the bong to think that Cameron will ever integrate with that aforementioned "other species"? Am I expecting too much from both sides to expect everyone to get along, side by side, even if just in parallel play? If this integration isn't possible, what then? I guess it's a case of “be careful what you wish for.” Some of those things that I should be familiar with as a parent of a typical 17-year-old may well slap me in the face as my son starts to integrate with his neurotypical peers. Or maybe it will be reality that slaps me in the face if Cameron struggles mightily in the general population setting. We'll never know unless we try. Either that, or I’ve got to really find that crystal ball.
Chaos is comforting for those who carry the deep psychic scars of long and unspeakable battles. At the close of the Vietnam War countless American soldiers found themselves restless and overwhelmed upon finally returning home. After fearing for their lives in the humid jungles of a hostile, alien world, dreaming only of drive-in movies, good ol' American food, and the family and sweethearts they left behind ... these ghostly survivors found their long awaited homecoming not only disappointing but oddly terrifying.
I went undiagnosed for nearly 25 years. That alone resulted in enormous stress and heartache. To make matters worse, my family faced a series of tragedies to rival those of Job, that ever-suffering Biblical figure.
Shortly after my diagnosis, my life grew stable for the first time in over two decades. Yet my anxiety was more crippling than ever. I wanted only to return to the comforting chaos of my past. Why?
The following words are a cryptic portrait of a profound inner struggle—a battle between my ruptured psyche, still caught somewhere in the humid jungles of my own suffering, and the brutally unfamiliar calm following that devastating storm.
A Prisoner of Heaven
On empty streets I searched for knowledge in a bottle of beer
And glimpsed the comedy of life while staring down the barrel of a .45.
But I learned! Oh, I learned!
And poetry ran wild and barefoot through the garbage in the sweatbox alleys.
We slept in the shadow of society,
Lying on our backs beneath a concrete network of freeways,
While the hum of the traffic above lulled us to sleep.
As we closed our eyes we vowed to be friends forever.
But forever came sooner than expected.
I was shot down in the streets on a quiet summer evening,
When the air was perfumed with adolescent lust and rage
And the red sky was cut into one long, jagged strip by the black teeth of the skyscrapers,
The skyscrapers that knelt their heads when my blood hit the pavement,
And seemed to onlookers like great robed monks standing in mourning.
These things I remember.
I see them now like blood-stained snapshots.
But we are not to think of such things here in heaven.
Though I am safe in this place I miss my friends
And we have wine only for our meals.
The rest say terrible things about the streets I came from
And they are happy for their eyes have seen God.
I too have seen God
And cried out when I looked into his eyes ...
For I could not mistake the eyes of the boy who killed me!
And though the rest of his features were kind I knew then that I'd been lied to,
And vowed to escape this gilded prison.
All around me are smiling faces, empty as a mannequin's.
The birds in the trees are stuffed yet somehow they sing.
My neighbors believe I am their friend
But I am alone.
Last night, as the voices of the choirs drifted like lazy gulls into the sunset,
I dreamt I was lying on my back beneath a freeway.
My friends slept around me.
It was quiet.
I was hungry and I was scared but that was alright,
For I could hear the hum of the traffic above me.
I knew that it would put me to sleep
And, momentarily forgetting heaven,
I believed it would meet my ears when I awoke.
Cody in a crowded mall, a noisy restaurant or a social scene where chaos runs amuck used to spell disaster. There is nothing that would send him spinning into a full-blown rage faster than the lack of structure and routine. Communicating his needs and desires at home is difficult for him. But in a situation like this he simply wasn’t equipped for it.
There is a certain part of the brain that processes communication. There are days when Cody’s brain processes speech just fine. But on a normal day it is sketchy at best. He knows what he wants to say, but the signals from the brain to the tongue short out along the way.
Imagine taking a movie on DVD, putting it into the player and then looking for a particular scene somewhere in the middle of the movie. You hit the skip button and you hear a few words from a scene. Then you decide that isn’t the scene you are looking for. So you skip to the next scene. You hear a few words from that scene but it isn’t the right one either. So you continue this process until you come to the right location of the movie. Now take all the words from the segment of the movie you just heard and put them together in a paragraph. You probably will end up with something that makes no sense to you. That’s sort of how Cody’s speech patterns work. You can kind of get a picture of how frustrating that would be for him.
What if many people are present in a room and conversing in several groups all at the same time, and there are people attempting to converse with you? Perhaps there are many different activities going on as well. Maybe two or three people are at a buffet table getting food and talking. Three or four are ordering drinks at the bar. There’s a group of people playing pinball, a group who are playing darts and another group who are playing video games. Now take the volume of all the noise and amplify it about 10 times. Take all the activity and speed it up about five times faster. How would you feel? Would the noise level bother you? Would the multitude of people and activities be overwhelming to you? This scenario might have the same effect on a neurotypical individual as a normal pub and grill scene has on Cody.
Cody does enjoy going to social activities but they must involve an itinerary for all the people to follow. Going to a movie theater is one example of a social activity that Cody enjoys. If everyone is doing the same thing then it makes it very clear to Cody what the agenda is. This makes him feel like he finally fits in with a crowd.
Sometimes being social is participating in something with only one other person. Cody and his tech, Stephen, often go to the recreation center to play basketball. They both like antique stores so they often go there to browse around. They go to the nature center and to the local discovery center—a sort of science museum here in the area. Stephen is very astute about how to converse with Cody, and sets an example of how to converse and be social with others. Because of this, Cody is now progressing toward being able to participate in activities with small groups of people.
Small groups are best for Cody right now. Larger groups tend to have too many who wish to do their own thing. For instance, if a large group of people visit an amusement park, there may be some who want to go to the fun house, some who want to ride the roller coaster, some who wish to see the animal exhibits and some who want to ride the Ferris wheel. So which group will Cody join? There are many options on the table, in a crowded place where many people are doing different things all at the same time. For some of us, it’s not an issue. For Cody it’s quite the conundrum.
Finally being able to see him begin to learn how to enjoy the things his neurotypical peers have been enjoying for a long time is a welcome sight. It makes my eyes well with tears to see his life becoming full of new adventures … things many others may take for granted. While he may have a long way to go I know Cody can do it. After all he’s come a long way in a short time, already!
Don't you just love it when things don't go as planned?
Of course, most of us don't love it. We like our plans. We like being in control, despite the fact that this is an illusion.
While I believe that being prepared and making plans are important, being unprepared—in the sense of being open and receptive—is also a skill worth cultivating.
I don't need to make this point to those in special needs families, because you already know all about this. You know how important it is to take a deep breath and let go when things get wild and crazy.
This being the case, it is you who have been my greatest teachers in the art of loosening up. My relationship with my brother Willie and with others in the L'Arche community have showed me, time and time again, that adhering to a rigid sense of how things ought to be leads to missing out on the strange, true, chaotic wonder of what is.
In short, it is because of those relationships that I was able to go with the flow at the Lollipop Kids Foundation Family Support Day last Saturday. As I wrote in last week's column, I'd volunteered to lead fellow siblings in a Sibling Support group. I'd prepared a mini-curriculum, complete with questions, activities, and time for reflection.
However, I'd prepared with the (incorrect) assumption that the siblings would be teenagers, or pre-teens at least. Yet as I enjoyed meeting families during lunch, I realized that nearly all of the siblings present were 10 years old or younger. In fact, one sibling was only 3 years old!
Oddly enough, I didn't feel panic. I'd resolved to show up and be present for whomever came to the event, and if that meant throwing my plans out the window, so be it.
I will always be glad that I did choose to show up. Though there was a fair amount of chaos—the 3-year-old's sole mission was to escape from the supervision of his (very patient) 14-year-old brother—there were also moments of strong connection. Though we took breaks to tangle ourselves up in a “Human Knot” and listen to Taylor Swift, we did talk about the realities of being a special-needs sibling.
The kids shared their experiences with straightforward transparency: How cool it was that their special-needs siblings had unique gifts, how awesome it was to know just how to make their siblings smile. They also shared the harder things: How frustrating it was when one parent always had to stay with their sibling, how self-conscious they felt when their sibling did something strange in public.
When I shared stories from my life, they reciprocated immediately. When I spoke about how frightening it was when my brother got out-of-control angry and punched holes through walls, another girl spoke up, saying that her dad had punched a hole in a wall after a frustrating time with her sibling. We met each other's gaze, and something of the isolation every sibling experiences healed over for both of us. As I listened to their stories—so like my own—I felt tears prickle in my eyes.
Despite the age difference, I felt akin to these kids. One young girl in particular seemed a kindred spirit. She was incredibly smart, perceptive, and kind; her presence was an anchor in the group. Because of her, I felt brave enough to share a little bit from my book, “Love's Subversive Stance.” Though I didn't read a story aloud like I'd planned, the kids loved looking at pictures of me and Willie when we were younger.
As the event drew to a close, my kindred spirit approached me, a copy of my book in hand. With a lump in my throat, I wrote a message for her. Parents milled around me; many were wiping tears from their faces, thanking the director and the other volunteers. And in the midst of it all, I was putting pen to paper, thinking once again how leaving normal had brought me to a beautiful place.
I know that for most people my age, dealing with illnesses like the common cold is a simple thing to do. However, I find it difficult to take care of myself when I am ill because even though I realize that there are symptoms to illnesses like the simple cold, I have a hard time recognizing them when they affect me personally. To me, colds generally come on suddenly without much warning. I have always had my parents to help me with any illnesses or injuries that have befallen me, but as I have gotten older, my parents have begun helping me to understand what I need to do as an adult regarding my own well-being and any health issues that come my way.
This issue came up last week when I came down with a cold. I spent much of the past week recuperating from this cold while attempting to maintain my regular school schedule. It gave me a chance to not only think about how such unexpected illnesses can negatively affect my daily routine—which really throws me off because I like my schedule to be consistent—but it also has opened my eyes to the fact that I really need to focus on what I need to do when I am ill.
The day I came down with my cold, my mother was the first to notice that I was becoming ill and discussed this with me. I did not recognize the symptoms of the cold because I tend to sneeze a few times every day, and I thought it was going to be just another day of only a few sneezes and nothing more. I also did not connect my sore, scratchy throat along with a developing cough to a cold coming on. As the day wore on, however, my cough started sounding worse and worse and because of my asthma, I struggled to breathe at times.
This pattern continued for most of the next day, with my mother giving me asthma treatments to help me breathe. I use a nebulizer machine to dispense my asthma medications, which my mother helps me set up and run. She also tried giving me a throat lozenge for my sore throat, but because the flavor was so overwhelming to me, I could not handle it. She also decided it was time to take me to the doctor. It was my mom that made the appointment and got me there. I did not make the appointment myself because I do not have the proper phone skills yet to effectively do so. My mother has given me a script in the past to practice calling 911, and she has told me that she will help me to come up with a template for making doctor’s appointments on my own. The doctor did prescribe some medicine for me, but I was wondering when relief would come.
As my cold continued, I realized that I would not be able to go to my favorite extracurricular functions including basketball and piano lessons. I also really wanted to go to a bookstore with one of my aunts; this trip had been part of my plans for a number of weeks, but due to my cold, I could not go. This was especially disappointing for me because I had been there before with my father, and there were several items there that I wanted to look at further. I do not like having disruptions in my schedule or plans, but I did have to accept the fact that I would have to wait until I was well before I could resume them again.
In the past few days, my cold has almost completely disappeared. I think I handled the changes in my schedule and plans fairly well. It does make me anxious, but I calmed myself down with the knowledge that my cold would soon end, and then I could get back to my regular routine again. After discussing my cold with my mother, I also realize that I need to work on recognizing the signs of illness, if I plan on living on my own. I did not notice my symptoms this time, but I am sure I will be able to recognize them in the future. I also plan on learning how to administer my own asthma treatments for when these symptoms do appear before they get worse. In the past, my mother has prepared different sets of instructions for other tasks that I have learned and mastered such as doing my own laundry and cleaning the bathroom and kitchen areas. She laminated them and used Velcro to strategically place them throughout the house on walls and doors. She plans on putting together a set of instructions for running the nebulizer as well as many other tasks I have as yet to learn and compile them in an easy-to-use reference book for me. I will also need to be aware of what medications I will need to take when I am ill, and know when to take them.
I can see that I will have to be more responsible for myself in this area as I work toward being an independent adult. My focus right now is on my college work, but I realize I will need to look beyond my parents and prepare for these things in the future. For now, I try to learn as much as I can from my experiences as they come up. In addition, having step-by-step instructions in place will greatly help me learn many life skills. I know this will take time, but with my parents’ help and a good plan, I know I can succeed.
According to the Centers for Disease Control (CDC), 1 in 110 children are known to lie on the autism spectrum in the US. For boys alone, that number increases to 1 in 70. It’s common knowledge within the autism world that boys are diagnosed more often than girls, and those girls that do get diagnosed are far more likely to be what’s often referred to as “low-functioning,” or severely affected. The medical community usually explains this away by saying that for some reason, autism affects girls differently. For whatever reason, girls who “get” autism are more likely to be “more autistic.” But what the soft sciences (sociology and psychology) ask that the hard sciences often don’t is: Where are the “high-functioning” girls? Is this a matter of actual numbers, or of accurately recognizing autism in girls? I’m sure that there are biological differences that cause autism to present differently in males than in females, but perhaps there is a far simpler explanation for the diagnostic discrepancy: Male and female social roles and pressures are different.
From a very young age boy and girl children are treated very differently. It’s an interesting paradox, because stereotypically autistic behaviors are far more socially acceptable in boys than in girls, which sounds like autistic boys would be the ones glossed over. But over time, as children age, this reverses. An autistic little boy who is obsessed with trains—watching them, talking about them, taking toy models apart and putting them back together—seems more like his peers of similar age. Many little boys go through a “train phase” and, assuming the autistic boy isn’t too socially challenged, he will be at least partially successful at integrating into a social group.
Now think about what happens to autistic girls. When I was very small, for example, I was obsessed with a great number of things: animal taxonomy, niche adaptation, and development; ecosystems, and meteorology; and outer space, and Star Wars. Most adults loved me because I was a very stereotypical “little professor.” But the vast majority of my playmates were little boys. We pretended to be Jedis, complete with light-sabers; we explored jungles and hunted lions; we played videogames mostly consisting of stealing cars and running over pedestrians; and we built spaceships out of cardboard and old pie tins. I had a few girl friends, but they only wanted to play with Barbies (games that always turned into murder mysteries if I was involved) and gossip about who “liked” whom. Not to say I didn’t enjoy those kinds of games; I would have gladly been friends with these girls if they had let me. They just didn’t like me. My best girl friends were “tomboys,” and early on I prided myself in that title. Everything that was marketed to me as associated with girls and femininity seemed weak, pointless, and devoid of any real strength or character. Boys were G.I. Joes, crime fighters, and the only superheroes who were more than their bodies.
As I grew older, the boys I identified with—the stereotypically “masculine”—began to avoid me. We were all slowly approaching puberty, and though we didn’t really understand, the boys knew of the unwritten social clause that separates boys and girls into two separate groups. The only boys who would still play with me were the boys who liked animals better than cars and didn’t play videogames. I eventually was forced to make female friends—real female friends, involving lasting relationships.
Thankfully, I was one of the lucky few singled out by a mother hen friend who took me under her wing and helped me create my own social circle. At this stage, autistic boys and girls begin to separate, developmentally. Autistic girls definitely don’t have it easy, but we have one distinct advantage. The female gender role encourages nurturing behavior, and an emotional openness that is actively discouraged in little boys. A friendly neurotypical girl may see a socially awkward lonely girl and go over and say hi. This neurotypical mother hen will befriend the autistic who can’t take the active role, and even introduce her to others, eventually building relationships for the person who couldn’t have done it alone. It’s not that neurotypical boys don’t want to do this, or are somehow less kind than girls, it’s that the way they are raised discourages this type of behavior, which is usually considered motherly. In girls, this is actively encouraged.
By high school this difference becomes far more obvious. Usually, the few autistic boys who aren’t forced loners have congregated into their own social circle. If you sit down at a lunch table and start talking about the special effects in Star Wars, one of the few kinds of people who’s going to respond positively is another autistic, who doesn’t mind the lack of social convention. In this way, the slightly more outgoing autistics will usually find each other. It’s the ones who stay quiet—or who’ve been bullied badly enough to want to stay quiet—who remain alone without the help of a mother hen. But their high-functioning female counterparts are often already part of a social circle, often one that includes neurotypicals. Verbal, high-functioning girls often have this distinct head start in the social world.
To thrive, or even get by, within the social role allotted to the female gender, one must develop social skills. Men are given somewhat of a pass when it comes to more nuanced social convention. Think of every time you’ve heard a joke or seen a sitcom about how men can’t read nonverbal cues. Women are expected to talk in a round-about, read-between-the-lines manner—“Do these pants make me look fat?” means “Tell me you think I’m thin and beautiful”—and men are expected to stumble in this mysterious women’s language. A girl who’s direct and forthright is often seen as blunt and rude. This convention is so culturally embedded that when sociologists conduct studies with equally qualified male and female candidates, men who ask for a raise are referred to as “go-getters” and women who ask for a raise are referred to as “pushy,” even “bitchy.” As a girl who was all but clueless when it came to social rules, I was thought of as a rude, annoying know-it-all. Even today I have a hard time making friends with neurotypical girls because of this; no matter how much I smile (and it has to be constant) I’m perceived as rude and unfriendly by girls my age.
This all comes back to diagnostic discrepancy, especially with late-in-life diagnoses. As girls get older, if they are able, they are forced to learn to interpret at least basic body language, tonal variation, facial expression, and social nuance. This means that after a certain point, the only “obviously” autistic women are those deemed “low-functioning,” because they’re the ones who can’t learn to fake it. Boys learn to fake it as they grow older, but even then there’s nowhere near as much pressure for them to rid themselves of autistic traits.
Many of the autistic girls and women I’ve met have spent much of their lives without a diagnosis. So, they’ve learned to adapt, and no longer feel they fit the diagnostic criteria. They used to have trouble reading facial expressions, but not any more, not since they learned how to. These high-functioning girls are getting missed, and they’re growing up struggling with depression, anxiety, and other mental health issues and they don’t understand why. I believe that in the near future, the diagnostic discrepancy will correct itself. Maybe there are more boys on the spectrum than girls due to genetic reasons, but I know that the gap is not as wide as it seems. There are more of us out there, and no one even knows we exist.
Victory is ours! I've just received a text message from my mom, alerting me to the fact that she and my dad are signing their will and Willie's special needs trust papers this morning. ...
It is that time of year again, when families get together for holidays and people start Christmas shopping.
My daughter wrote a monologue for an acting class about growing up with a sibling on the spectrum.
I’ve come down with an early case of the “Bah Humbugs” this year.
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.
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