Teen Autism

I’ll bet you have A-Files too. Read all about mine over at Hopeful Parents today.

“sig·nif·i·cant, adj. : of a noticeably or measurably large amount”

- Merriam-Webster’s Dictionary

Please join me at Hopeful Parents today to see what else that word means to me.

Having a special needs child growing up in my home has taught me more about trust than any other element of my life. Especially with my particular child having such an independent spirit and wanting to do things on his own. The problem is that he does not always have the coping tools and social understanding necessary to navigate many situations he could encounter. And so, as he has gotten older and has started wanting to go places on his own, I have learned that lecturing him on safety issues and wringing my hands while he’s gone are not the best ways to cope with the experience.

Of course, all good parents in general are concerned about their children’s safety and well-being when they’re out doing something on their own. I know how it is with a non-autistic child because I have one. I know that even though I have just as much concern for his welfare, the worry is mitigated. He can handle himself far better in situations where other people are involved, which is almost any situation when someone’s away from home. I don’t worry about him causing problems, or about his behavior escalating. I don’t worry about him reacting violently to insects flying near him. I don’t worry about someone tricking him into doing something unsafe or unlawful. And I’m just as relieved when he gets home safely, but while he’s gone, the worry seems more manageable.

For two years now, my autistic teen has been asking me to let him ride his bike to the local grocery store alone. And for many reasons, I kept putting it off. I just didn’t feel that he was ready. Now, since he recently started riding his bike to and from school every day and has demonstrated that he can use a cell phone properly, I can no longer justify not letting him ride to the store, which is just a little farther away than the school.  One afternoon last week, he asked me to let him ride his bike to the store. I put it off, telling him he had to do his chores first. He did them in record time and asked me again, assuring me that he’d be careful. Out of stalling material, I literally wrung my hands and began breathing rapidly, like the beginnings of a panic attack. Nigel noticed.

“What’s wrong?” he asked.

I hemmed and hawed. Finally, I said it. “I just wish you didn’t want to do this, Nigel. It worries me.”

He paused, and then he made eye contact and said, in his flat but beautiful voice, “Mom, sometimes you just have to trust me.”

I almost gasped. A lump quickly formed in my throat. It was one of those rare lucid moments when he says something so simple, yet so profound. Somehow, he knew exactly what to say. “You’re right,” I conceded. “I think you’re ready to do this.”

“I am,” he said in the same resolute tone.

We then did a quick “verbal social story,” since these days he rarely needs them to be written. I verbally walked him through the route he would ride, told him where to lock up his bike, discussed what he would do in the store, and suggested that he not stop to talk to anyone along the way. He could briefly answer a question if someone asked, but then come straight home. We figured out how much time he would need to get there, get his Silly Putty, and come back. Then he left, and I watched him out the window as he rode away. I visualized a herd of angels surrounding him.

While he was gone, I took his advice. I worked at my desk and just trusted. I trusted that he could do this, trusted that he would be all right. And to my surprise, I actually believed it. I did so well that right about the time I thought to check the time, I heard him rattle the side gate to indicate that he was home, putting his bike away. My eyes immediately welled up and I patted them dry as I rose from my desk. Nigel strode into the house and I went to greet him.

“I did it, Mom,” he said calmly, with a hint of pride. “See? I told you I would be fine.”

“You did and you are,” I said, putting my arm around his tall, warm frame. “I’m really proud of you.”

“Thanks for letting me go.”

I tried not to get misty-eyed again. “You’re welcome, honey,” I said.  How did he know that that’s the hardest part of trusting - the letting go? That, as I discovered that afternoon, it’s also the most rewarding?

Despite my best efforts, my Hopeful Parents post did not auto-publish at the appointed time on Sunday morning. I, being somewhat technically challenged, was not too surprised to discover it upon my return from my little weekend trip. So, my apologies to those who may have looked for it earlier, but it’s there now! Oh - and the little weekend trip? Wonderful. I’ll write about it soon. In the meantime, please hop on over to Hopeful Parents, and I’ll be back here in a couple of days. Love.

“You’re lucky he’s so high-functioning.” - people who mean well

*

I’ve heard it a few times over the years. And I’ve never been sure how to respond. I mean, the first time it was said was by someone in a park when my son was running and laughing. He was four and non-verbal.  So . . . not sure how non-verbal equaled high-functioning. Not sure how a complete stranger could make an assessment like that after observing my son for one minute.  Perhaps, since it was 1998, the person didn’t really know much about autism and thought it was a predominantly physical disability. Perhaps if someone had turned on a leaf blower and my son had started screaming, the person would not have said that. Perhaps if she had asked him his name and not received an answer from him, she might have thought differently about his functioning level. Not sure. I really didn’t have time to get into it with her. A second later, Nigel darted for the street, and I ran after him. High-functioning.

High-functioning can be misleading. Now, people see him as a high-functioning verbal teen. And that’s what he is. But what they don’t see are the years and years behind that high-functioning teen. The years of language acquisition through echolalia, over a decade of speech therapy, and daily life. The years of learning to filter sensory issues so that he can function semi-comfortably in various environments, even those as basic as classrooms, restaurants, grocery stores, and public restrooms. The years of learning appropriate and inappropriate behavior, with which he still struggles.

When people see a high-functioning verbal teen, they don’t see the daily medications he must take to manage his behavior and his anxiety. They don’t see the daily doses of risperidone and sertraline. They don’t see the subdued quality in his eyes that his mother has had to get used to seeing, because she knows it helps her son to achieve his goal of being mainstreamed in his local public school. Without the medication, he would not be able to manage his behavior. That is one way that high-functioning autism affects him. Being able to communicate is huge, but it is not the only issue.

When people see a high-functioning verbal teen, they don’t see how he’s been bullied and harassed and taken advantage of. They don’t see his trusting nature, they don’t see his lower emotional age, they don’t see his vulnerability. They don’t see how because he has to spend his days working so hard  - to filter the sensory issues of daily life, focus on trying to be appropriately social, and try to concentrate on school work - that he is exhausted. That sometimes it’s all too much for him, being autistic in this world.

Yet he continues to try, he continues to want to. He has a certain joie de vivre that I envy. Because of his autism, he doesn’t understand certain social obligations that will affect him very soon, as he enters adulthood. He wants to be an inventor when he grows up - an inventor of time machines. And while the finished product would most likely be quite lucrative, he doesn’t understand that he needs to have some type of income while he’s inventing his time machine, so that he can buy food for himself and pay for his shelter. When I try to explain this to him, he suggests that we should all live like our early human ancestors, in a very primordial sense. He says this with conviction, the same conviction with which he discusses his time machine. I don’t see that going over well in a job interview. High-functioning.

There are still so many things that others don’t see. Because they see a high-functioning teen, their expectations are higher, and while we should never sell our ASD kids short in what they can accomplish, we as parents know where the difficulties lie. We know how their delays in emotional and social development still affect them. We worry about how they will interact with people who don’t know them when we’re not with them to facilitate. We know that there are things about living in our society that they cannot understand, such as having a job and paying the bills. Yes, my son is now high-functioning, but he has fought tooth and nail (literally, sometimes) to get there. If there was any luck involved, it was because every time he’s wandered away or bolted into the street or lit something on fire, he’s never been harmed. So yes, to everyone who’s ever said that I’m lucky, I am.  High-functioning or not.

You would think that your constantly-eating teenage son would come running when he hears the words, “Dinner’s ready!” Especially since you have resigned yourself to only prepare the foods that he will eat because he is thin and needs all the food he can get. So he doesn’t have to worry about coming to the table and seeing something he might not like. Why then, when you say, “Dinner’s ready!” does he growl in response, “That fast?!” This is after the five-or-ten-minute transitional warning that you have learned to always give him. You always say, “Dinner’s in five [or ten] minutes!” and make sure that he hears you, so that he can prepare himself mentally for the transition and finish up what he’s doing. Yet every day, without fail, he will sneer, “That fast?!” when you tell him that dinner is ready, even though he has had his advance notice.

And every day, you model a more appropriate response for him. “Okay, Mom” or “Be right there!” You tell him that he should respond more politely to someone who prepares a meal for him. But somehow the appropriate responses don’t seem to register. He doesn’t get it. For years now, he has said, “That fast?!” in a negative tone, and it just seems to be a habit for him. And you worry about him doing that at any friend’s house where he might actually be invited to have dinner. You worry that in the “politeness vs. difficulty with transitions” fight, politeness will always lose.

But, much to your surprise, the day will come when you will say, “Dinner’s ready!” at his bedroom door, and he, seated at his computer desk, will politely say, “One moment, please.” And you will just about fall over dead from the shock. And when you recover, you will think that he really must be up to something in there to be that polite. So you poke your head in and check, and he’s not doing anything out of the ordinary. So you praise him for being polite, but you don’t want to overdo it or that will exasperate him and then he will never be polite again. And you can’t help but wonder if this is just a one-time deal, if he had by chance recently watched a movie that featured that line when a character announced that a meal was being served and the scene was still fresh in his mind.

And the next day when you tell him that dinner’s ready, he says nicely, “Okay, Mom.” And you thank him and then just stand there in the hallway and think, Wow! He’s getting it! And the next day when you tell him he says, “I’ll be there in a minute.” And you start to hyperventilate because he’s been polite three days in a row. And the fourth day, you tell him when dinner’s ready, and he growls at you, and you realize that you had forgotten the 5-10 minute “warning.” So at least now you know that your transitional cue really helped, even though all this time it appeared to not make a difference. The next day, you remember the “warning,” and you tell him that dinner will be ready in five minutes. And he helps.To set. The table. And after you pick yourself up off the floor, you realize that even though he still needs help with transitions, he is finally learning to respond politely. Yeah. He’s getting it.

“Independent functioning is not simply the ability to do something, but also the ability to decide what to do. It is not only the ability to take care of oneself. It is also the ability to take responsibility for oneself.” — Elaine Heffner (20th century), U.S. psychiatrist and author

Michelle at The Sneathen Family Site, one of the blogs I read regularly, posed an excellent question at the end of a recent post. She asked, “When, if ever, have you let your kids stay home for short periods on their own?” And since one of the most common searches used to find Teen Autism is “should an autistic teen be left home alone,” I thought I would do a search myself. There are plenty of parenting sites out there that offer guidelines for non-autistic kids and staying home alone. Given the fact that I couldn’t find much when I added autism into the mix, I figured that this subject warranted a post.

I started letting Nigel stay home alone for short periods starting at age twelve. We began with 20-minute increments and worked our way up to a few hours. I felt comfortable with that only after he had shown proficiency in the following areas:

1) Being able to call out if necessary and taking periodic check-in calls from Mom

2) Not opening the door for anyone, unless it’s the neighbor yelling “Fire!” Fortunately, that second part has not happened.

3) Knowing how to get out of the house quickly and where to go if something blows up

4) Staying in the house the entire time unless something blows up

5) Not doing anything that could cause anything to blow up

I reluctantly admit that we have had problems with items 4 and 5 on that list, resulting in the suspension of staying-home-alone privileges for periods of time. Apparently, the euphoria of being home alone sometimes causes my son to climb the 40-foot high tree in the backyard or set the couch cover on fire using a magnifying glass. Thus, he is also working on impulse control. For an autistic teen yearning to be independent, this is quite motivating, because he detests having his home-alone privileges revoked.

So, basically, what it boils down to is a combination of verbal ability and safety awareness. If Nigel did not have the ability to use the phone in an emergency, I would not consider leaving him home alone. His safety awareness has been developing for the past few years, and even though he “forgets” the home-alone rules once in a while, he is constantly improving. Someday, I may even return his magnifying glass to him.

Yesterday, on my way home after picking up the boys from the 700-Mile Kid Swap, I thought about what it was like when we first started doing it seven years ago. I thought about how Aidan used to throw up in the car at least every hour and how Nigel, newly verbal and still figuring out syntax and pronouns, would ask, “Why you throw up?” So I thought I’d do a follow up to my previous post on this topic.

If I blogged five years ago, Nigel would have been nine and Aidan would have been seven. I would have written about how hectic it was to have two children having IEPs with one parent to attend them (and trying to find childcare beforehand). I would write about how Nigel, who had taught himself to read at age three, before he could talk, was now reading at a middle school level and could comprehend 90% of it. Conversely, I would write about how Aidan still couldn’t read, even though I’d read to him every single night of his life and had tried to teach him for years, and so I had him in a special reading program at his school in addition to his speech therapy.

Five years ago, I would have blogged about emerging Nigelisms like this:

The Scene: Interior suburban family home. Two young brothers are seated at the dinner table while their mother serves them their plates of food. For the first time, the children are having full-size turkey burgers, as opposed to their usual half-size, so their mother placed them on buns instead of regular bread, as she had previously done. Due to their limited acceptance of foods, she wonders if they will refuse the buns.

Younger brother, about age 5: Mom, what is this fred?

Mother: It’s a bun.

Younger brother: There are bun freds?

Older brother, about age 7: Not ‘freds.’ BREADS. Not an F, a B.

Nigel, as soon as he learned to talk, loved to correct Aidan, who had pronunciation issues. But one thing that surprised me a little was that Nigel seemed to want me to correct him (Nigel). If he misused a pronoun, I would gently correct him, and then he would repeat what he’d said and insert the correction, as if memorizing it. It took about four years for him to learn to use pronouns, articles, prepositions, word order, and verb tenses correctly. He put so much effort into learning to talk. It always touched me how receptive he was to my gentle corrections. It was always the same - he would quietly repeat what he’d said and insert the correction, then move on. This happened several times a day for a period of about four years. Having studied French for several years while in school, I recognized the process of learning a foreign language. And that was how Nigel learned to speak English - like it was a foreign language.

If I blogged five years ago, I would write about how I ventured back into the realm of grocery stores and the occasional restaurant with Nigel. Salon haircuts were possible for the first time with ear plugs. He was finally starting to filter out all the sounds that had been unbearable to him before. It was liberating for both of us. I would also write about my first published magazine article, “Autism on the Rise,” which was featured in a regional parenting magazine. I would sadly and angrily blog about the first time I heard Nigel being called a retard, and how I ran outside and yelled at the boy who said it.

Five years ago, I would write about Nigel’s incredible third grade teacher, the man who happily volunteered to take on a newly mainstreamed autistic boy, one who had struggled notably the previous school year, even with a full-time aide. Mr. Incredible welcomed Nigel, provided the structure he needed, patiently included him and encouraged his other students to do the same. He made Nigel feel so comfortable that, for the first time ever (away from home), Nigel removed the snug-fitting hood of his jacket when Mr. Incredible suggested it to him in the classroom one afternoon, after six months in his class. And Mr. Incredible was just as excited about it as I was. He still, five years later, inquires about how Nigel is doing.

Incidentally, Mr. Incredible was also Aidan’s third grade teacher. By the end of that year, Aidan was reading. And now, just three years later, he’s reading at a high school level. Five years ago, I would have never thought that would be possible. That and so many other amazing things. New issues have certainly come up in the past five years - bullying, homeschooling, behavioral problems, medication, etc. - but the fact is that both of my boys continue to improve. Hope abounds.

I confess. When it comes to blogging, I do a lot of lurking, especially when I first discover someone’s blog. I feel like I need to get a sense of the person before I reach out. But I also lurk because sometimes, like when I’m reading about someone who’s just beginning their journey with their autistic child, I become lost in my memories. It’s been nearly twelve years since I began my journey, when Nigel was two and a half and I thought, Hmm. He’s not talking. He often doesn’t react when people talk to him. He can’t seem to interact with peers. Autism was the farthest thing from my mind. The child development books I owned barely mentioned the A word. “Autistic children do not show emotion or affection,” they said. “They live in their own world.” That told me nothing.

Thus began a process of referrals and testing and ultimately a diagnosis that, at the time (1997), confounded me. I went back to Barnes & Noble and found a copy of the DSM IV (first edition), looked up autism, and realized that it was quite different than what I had thought it to be. And I knew then that my son had it. No question. He fit all of the criteria. Every single one. I put the book back on the shelf and went full throttle into his intensive ABA-based therapy. It was certainly gentler than full-on Lovaas (Nigel’s program did not use aversives), but the frequency at the center combined with the home visits proved to be effective and beneficial. Nigel improved, but he did not “recover.” I slowly realized that was not going to happen.

And so, if I had blogged ten years ago, when Nigel was four and a half, I would have written on a daily basis about things very different than what I write now. There would be no Boy Scouts, no Nigelisms. No posts about how well he now does in grocery stores. Ten years ago I would have written about the veritable riots he had in grocery stores, malls, restaurants, while having his hair cut (even at home), and going to the doctor’s office. I would write about how he shrieked and writhed on the floor when I had to take him into public restrooms. How he wailed if anyone even walked past the door where the vacuum cleaner was kept. I would write about how fearful he was of hearing tests, even though I held him on my lap the entire time he screamed, and his traumatic lead testing experience. I would write about my frustration explaining to friends and relatives why he did the things he did. I would write about my joy if I found a helpful autism book, because there were so few then. I would write about Nigel’s rampant echolalia at age four and a half, how he often tried to use memorized lines from movies and fit them within the context of the real situation. I would write about his hyperlexia, teaching himself to read at age three and a half, before he could talk. I would write about how he greeted visiting relatives by reciting their license plate numbers instead of saying hello. I would write about PECS cards, visual schedules, home visits, and the dedicated therapists who tirelessly worked with him. There would be talk of the precursor to IEPs, the IFSP (Individualized Family Service Plan) meetings, which we attended every few months.  

If I blogged ten years ago, I would mention my fears that two-and-a-half-year-old Aidan also had autism. He exhibited the same extreme sensory issues as Nigel, and also had a significant language delay. But Aidan made eye contact. He didn’t line up the Hot Wheels cars along the back of the couch and tilt his head while staring at them, as Nigel did. I figured maybe Aidan had a touch of PDD, but I could see the difference between my boys. Even so, some of Aidan’s sensory issues turned out to be worse than Nigel’s, particularly his oral defensiveness and proprioception. I enrolled him in the same center where Nigel received his therapy, and Aidan received some OT and speech. (He was in speech until he was almost ten, and also had an IEP until then.)

Ten years ago, I would write about just trying to get through the day. At that point, I couldn’t even think about the future. I couldn’t imagine what my boys would be like at twelve and fourteen. I was just so preoccupied with helping them to be as comfortable as possible in this world. And trying to keep my sanity because I was so isolated.

And so, when I read those blogs written by parents of children much younger than mine, I don’t want to come off as a know-it-all when I say this, but I say it with true empathy and understanding: I know what you’re going through. I’m there with you. I remember it all. You will get through it and your child will improve. He or she may not be able to do what Nigel or others can do now, but in many ways he or she will progress. Your child will not be the same ten years from now. And neither will you. (And I mean that in a good way!)

The day starts off as such a beautiful, clear day - sunny and almost warm. I decide to ask Nigel to accompany me to the grocery store to pick out a different cereal in addition to what he usually has every morning. He agrees. We walk in the store, side by side, and head over to the organic produce section. “Where are the coconuts?” he asks. I tell him that they are probably in the regular fruit section and point him in the general direction.

He walks over by himself, and I watch. Not because I think I need to, but because, once again, I marvel at his ability to filter all the sensory input that used to be agonizing for him. The luxury of this - to me - never wears off. The sheer joy of it. It is comforting to see that he is happy, not distressed in the least. His gait is confident, purposeful. I look down and pick out some broccoli. In a moment I look up and see Nigel, fifty feet away from me, across produce stands and people and carts, and he is standing there looking at me, a big smile on his face - eye contact, even. He has found the coconuts. I smile at him, too, for so many reasons. He comes back over to me and asks if he can have a coconut so that he can make a replacement for one of his shell-cloppers from Monty Python and the Holy Grail. He likes to clip-clop his way through the house, acting out scenes from the movie. He made a pair of cloppers about a year ago, and one broke. Of course I will let him get a new coconut, but I ask how much they cost because I want him to be aware of things like that. He briskly walks back over to check. “Two dollars,” he says. “Is that okay?”  Sometimes he is so cute. I assure him that it’s fine, then suggest he go pick out his cereal. He returns a moment later with his completely appropriate, healthy choice (no, I’m not being sarcastic - he has learned not to bother asking for anything with refined sugar, after years of being turned down). He then asks if he can look at toys - not to buy, he assures me, just look. I tell him okay, but be back in five minutes.

He returns as I am unloading my cart at the check stand, exactly five minutes later, brandishing a small Lego kit that he has somehow not yet acquired. He tries to bargain. “I’ll have this instead of the coconut,” he says as he picks up the coconut to return it. I gently remind him that he promised he was only going to look at the toys and not buy any. A blank look crosses his face as he remembers. “But it has a crystal wand,” he says in a small voice. “Maybe some other time,” I say. “We’re not getting toys today.” He reluctantly says okay and goes to put the Lego back. And as I finish unloading my groceries, I marvel yet again at this child who has come so far, who, as a teen, is doing little things on his own. “Look, Ma - no hands” for us translates to “Look, Ma - no sensory issues.”  Or, “Look, Ma - no meltdown.” Of course, he doesn’t say that, but I’m thinking it. And his sensory issues are far from gone; he has just learned to filter them and cope with them. He still needs earplugs in movie theaters and often covers his ears, is a very picky eater, and exhibits some sensitivity to light and touch, but overall he does quite well now. He also knows when he needs to diplomatically settle for a coconut over Lego, and maybe, deep down he appreciates the subtle reminder that that was what he wanted in the first place.

We walk out to the car and the weather has drastically changed in the half hour that we had been in the store. The sky is dark gray and the snow is blowing at us horizontally.  ”It’s snowing!” Nigel exclaims with perfect inflection. We hurry out to the car and he stands by his door, waiting to be let in. I ask him to help me load the groceries and he complies. As I put in the last bag, I hope for a second that he has thought to put the empty cart in the stall without me asking him to, but he is back waiting to get in his door, and the cart is still next to me. There will be other teachable moments, when the sun is shining.

I put the cart away and run back to the car. We get in and Nigel pulls the coconut out from underneath his jacket. “At least I protected the coconut from this climate,” he says. I tell him that it looks like a perfect one for his project. I look at the windshield wipers flicking away the snowflakes as I drive home. I breathe in sharply and feel overwhelmed with gratitude for so many things. That smile, for one thing, when he found the coconuts - it was just for me, and I will treasure it always.