Teen Autism

A friend of mine recently suggested that I identify and write about the three biggest areas of concern for parents of autistic children. I quickly determined my three, and they are probably universal.

1) Safety

Our children’s safety is a huge life-long concern. We worry because they can have extreme responses to sensory issues, like darting into the street because a bug flew in their face or screaming and writhing on the floor in a public restroom because someone started the air hand-dryer. Our children are also vulnerable to being coerced into doing things that are dangerous or illegal because they are trusting and many of them want to have friends. We worry if our child leaves the house when unsupervised; some are runners who like to “escape.” We worry about our children injuring themselves or others when they lash out due to frustration or fear. We worry about how people out in the community will respond to them. Safety is definitely a primary concern, and parents must be vigilant.  

2) Education

We parents are equally concerned about our autistic children’s ongoing education. We want to make sure that they are in cognitive-appropriate programs and that they have access to the various types of therapy that they need so that they can progress to their optimal level of development and functioning. If our children are mainstreamed, we constantly have to check in to make sure that their needs are being met, that they are not being bullied, and that they aren’t just being sent to the library to watch videos. Our children’s academic and social development greatly affects their potential, and we always want them to be happy, learning, and valued. This involves a great deal of parent advocacy.

3) Future

It may only be an occasional thought for parents of younger autistic children (mostly because we were too busy trying to deal with the present), but once our children hit adolescence, it becomes a major concern. What does the future hold for my child? How will he be in adulthood? What happens when I’m not around to care for him? These are all questions that entered my mind upon Nigel’s initial diagnosis, and infrequently in the ensuing years. About a year or so ago I started to really wonder about his future, to think about it on a regular basis. I have concerns about how independent he will be, how he will navigate the community without my intervention, how he will interact with people. Most importantly, I want him to feel fulfilled with his life, to have a job that he enjoys and people around him who appreciate him. I want him to be happy. Of course, that is what all parents want for their children. But with autism in the picture, parents so often have to orchestrate the outcome. Our concerns about our child’s future become our champion cause.

For years I had a secret that I was reluctant to tell, and rarely did. After Nigel’s diagnosis, I thought that people wouldn’t believe it. But people here might, and so I divulge: I have always been fascinated by autism. I first read about it when I was eight years old and I used to read the twenty-five volume hardcover Encyclopaedia Britannica volume by volume. I would sit in the brown upholstered rocking chair in our living room, open up the large, heavy book in my lap, turn the crackly new pages, and smell the fresh paper-and-ink scent of a previously unread book. I’m sure I didn’t read all of them cover to cover, but I read enough to learn all sorts of things. Autism was one of them.

I became intrigued right away. I studied it throughout childhood and adolescence (although the only printed information I found was archaic), and in college I received my minor in psychology, stemming from my long-time interest in autism. Even at a young age, I wondered what caused it. In adolescence I wrote a story about a teenage girl who had autism, and she could talk, but her speech was echolalic. I didn’t know about echolalia at the time; I hadn’t even heard of the word. I just somehow knew that autistic people communicated that way. It was as if I had this innate understanding of autism. When Nigel was diagnosed at age three, however, at first the idea seemed impossible to me because he was so affectionate. The old stereotypes (and the archaic descriptions I read) really got in the way of recognizing it.

Many parents whose child is diagnosed with autism will feel a need to grieve. The future of their family will be vastly different from that of most, if not all, people they know. They are fearful, not knowing what to expect, and their response is only natural. Oddly, emotional as I am, I did not cry when Nigel was diagnosed. I have on many occasions since; for example, out of frustration and sadness for not being able to do things with my child that other people take for granted (going to the grocery store or a restaurant), and, in recent years, I’ve cried because it pains me to see Nigel try so hard to fit in with his peers only to be laughed at and bullied. But I didn’t cry when he was first diagnosed, and I’ve often wondered if, in addition to it being a shock, maybe I subconsciously knew that I was destined to have an autistic child. Maybe all those years I spent reading about and studying autism, due to a childhood interest, was my subconscious mind prepping me, saying, “Start wrapping your mind around this.”

Is that farfetched? I’m fascinated by autism for most of my life and wind up having an autistic child? I don’t know. I remember a chill came over me when Nigel’s diagnosis was uttered. I was scared, it didn’t seem logical, based on what I had read, but deep down I knew it was true. Some words etched themselves on my soul: This is my path. Somehow I have always known it.

Even though I miss my boys during the summer, I enjoy being by myself so much. I savor the quiet. I enjoy being free to spend my time at what I choose, but especially, I enjoy not having to talk. And that’s kind of the stereotypical hallmark of autism, isn’t it? Not talking? Of course, there’s a world of difference between not wanting to and not being able to. But stay with me . . .

My mother said that when I was a baby I would get on my hands and knees and bang my head into the headboard of my crib in a rhythmic, repetitive way. And I rocked. As a child I rocked myself on couches if there were no rocking chairs available. To this day I love to rock, I love the soothing element of the motion. Isn’t that a form of stimming? Rocking and banging my head repetitively?

Apparently I was also resistant to touch, to contact. I am told that I didn’t like to be held. Where have we heard this before?

This is why I believe that some people are genetically predisposed to autism. Even though I was not autistic (I talked very early and exhibited a high level of social awareness), I can see some faint characteristics in my infant and childhood self. The writing was on the wall. All it took was the combined genes of someone else who had been a bit like me, a dose of terbutaline in utero, and a whopping bombardment of thimerosol within the first few months of life and  . . . voila! Autism.

Yesterday I noticed at Café Press that there are a lot (thousands!) of great autism awareness T-shirts available. Some of my favorites can be seen by going to this link and then just clicking through the pages. “What? Is my autism showing?” is good, “Hang on, I know I have a social story for this” made me laugh, “Yes, my son has autism. No, he’s not like Rainman” is another good one, “When children cannot learn, it’s time to change the way we teach” hit home with me, as did “Parenting advice not appreciated unless you also have an autistic child.” Amen to that! I think I’ll buy that one! Wish I had it years ago!

There are so many good ones. One I really like is “got autism?” styled like the “got milk?” ads. I don’t know how Nigel would feel about wearing it, though. His favorite T-shirt has a silhouette of Bigfoot on it and says “I believe” across the bottom. He proudly wears it everywhere.

And then I saw a T-shirt that read “Autistic and proud” and I got chills and a lump in my throat. Nigel would probably feel self-conscious about wearing it. But I think the reason why it resonated with me is because I’m so proud of him. Yes, there are plenty of T-shirts that read “I’m proud of my autistic son/daughter/brother/sister/grandchild/etc.” on them. And those are great. But ultimately, I want my son to be proud of himself and all that he has accomplished: wanting to communicate, learning to talk, which was so difficult for him, figuring out how to filter his sensory issues (equally difficult), learning about all the social expectations of this NT world and dealing with its ignorance. But even if he hadn’t done all of that, I would still want him to be proud of his unique, amazing self. All auties should be “Autistic and proud.” I salute every one of them.

I found out an amazing coincidence yesterday. I ran into an acquaintance of mine from a couple of years ago, and we started talking about our sons, since we remembered that we both have sons of approximately the same age. It turns out that his son and Nigel were born on the exact same day, same year, same hospital, within two hours and fifty minutes of each other. Bizarre. I thought, aside from the autism, they must be a lot alike.

And that got me thinking. Out of the seven or so babies born in that place at that time, we were visited by the Autism Fairy. The luck of the draw. But I don’t think that in a Why us? sort of way. There are times, like when I was at work and the school would call me about a behavioral problem, and when I was at the movie theater and the manager and Nigel came to me in the middle of the movie, that I think Why me? at that moment, because I am stressed. But my big-picture thought process is more accepting.

I’ve heard it said that God, or the Universe, won’t give you anything more than you can handle. And if I had a dollar for every time I cried, “I can’t handle this!” I could easily buy myself a nice case of wine. But you do what you have to, you get through it, and, ultimately, you handle it. Maybe not optimally. But you do the best you can.

Because I believe that we were chosen to have autism be a part of our life’s journey. We are a special needs family. And the Autism Fairy visited the right room in the hospital that day. I’m sure of that.

Something . . . strange, but amazing, happened today. I am still in a sort of daze about it.

I took the boys to see a movie this afternoon, as promised for cleaning their rooms. They wanted to see Ironman, and I wanted to see Prince Caspian, so I decided to try letting them be by themselves. Another exercise for me in trusting and letting go. There have been previous times when we’ve gone to see a movie together and the boys have sat on the opposite side of the theater from me, and there had been no problems, so I thought they would be okay this time with me in a different movie. I bought them a few snacks, walked them into their theater, instructed them not to leave the theater unless they had to go to the bathroom, told them to wait for me in the arcade if their movie finished first, gave them a few dollars for the arcade, and told them I’d be in theater 2 if there was an emergency.

About half-way through Prince Caspian, I became aware of two people standing at the foot of the theater stairs, looking up into the audience for someone. One of them, I realized as my heart jumped into my throat, was Nigel. The other appeared to be a theater manager. Adrenaline coursed through me and I began to shake, thinking that either something had happened to Aidan, or Nigel had done something to cause a problem. Why me? Why now? Why? I dreaded whatever that manager had to tell me.

I don’t know what my face must have looked like as we stepped into the foyer and I tried to ascertain the mood of the manager. I was full of fear. The manager introduced himself as Mr. Bitteck (I believe) and told me that Nigel had requested a tour of the theater, and that it was fine, but that he needed a parent to come with him. I was in shock. I had braced myself for either horrible news about Aidan or a confrontation about something Nigel had done. I felt a bizarre combination of relief that no one was hurt or causing problems and exasperation that Nigel had not followed my instructions about staying in the theater with Aidan. I asked the manager if we could do the tour after the movies were over, and he said of course. So I thanked him, told Nigel to go back to Ironman and to stay with Aidan, and I wobbled on rubbery legs back to my seat.

I am glad that I had the remainder of a movie to sit through to be able to sort out my thoughts and feelings. If I didn’t, I might have chastised Nigel for not following my instructions, and I can see now that it would not have been the right time to make an issue out of it. I realized, as tears formed in my eyes during a battle scene of Prince Caspian, that Nigel had actually done something amazing. He went after a dream. He thought of something that he really wanted to do, and on his own he asked around to find someone who could help him. He has always loved movies. I just didn’t realize how much.

After the movie ended, I came out to the lobby and found the boys waiting for me. We asked the ticket taker to page the manager, and he came out and led us on an incredible tour of the projection rooms of the 15-screen movie theater (Cinemark Tinseltown). It was phenomenal. Apparently they only do this when certain individuals request it, and it had been a while since the last time anyone had. I was so impressed by Mr. Bitteck’s professionalism and his acceptance of Nigel as Nigel interjected the tour with trivia about film history involving Thomas Edison and the kinetoscope, the Lumiere brothers, and even the role of Nichola Tesla‘s work. Occasionally I would gently remind him, discreetly near his ear, “Let’s listen to Mr. Bitteck,” and he did. Nigel commented that he was excited to see a “piece of history,” and Mr. Bitteck confirmed that it was indeed just that. Within two years, the theater would be going completely digital. He also took us to an area where they splice the film and, at Nigel’s request, demonstrated how the machine worked. Nigel asked for a sample of the film and Mr. Bitteck offered to give him the spool of film for an entire trailer!! Nigel said, “I feel like I won the Kentucky Derby!” I tried not to cry.

We came out of the theater to a gorgeous sunset of purple, orange, and pink. Like the heavens were smiling with us. I drove home almost in a trance. I reveled in the wonder of what my son had accomplished, and what I had experienced because of him. I wished I could remember all the things I learned and all the things Mr. Bitteck had told us. Later, after dinner, I told Nigel that I was proud of him for doing something that was important to him. But then I quietly described to him how afraid I was in the middle of the movie when I saw him with the manager and I didn’t know what it was about. I think Nigel understood. He looked at me, and in the most sincere voice said, “Sorry.” And I hugged him and thanked him. Then he gave me a five-inch length of the film from his trailer. I will keep it forever, probably even frame it.

Last weekend I saw a really good local R & B band called Annie Mac, and in one of their songs, the vocalist sings, “If you want something, you gotta ask.” Nigel asked for something that he wanted. At one point during the tour, he turned to Mr. Bitteck and said, “This is the greatest moment of my life!” I hadn’t told Mr. Bitteck that Nigel had autism because I didn’t think it needed to be mentioned. But I believe he knew that he was in the presence of an exceptional kid. I couldn’t thank him enough.

My first experience with disabilities was Room 2 at Los Molinos Elementary School in Hacienda Heights, California. Mrs. Lu, who in my memory did not appear to have any teacher aids or assistants, taught this class of approximately twelve children with various disabilities. That was “mainstreaming” in the 70s. The kids in her class (ages 6 to 12 or so) had their own lunch table in the cafeteria; no one from another class dared to sit there for fear of being ridiculed by the rest of the school. The Room 2 kids all played together at recess. Occasionally one of them (I remember Stacy, a tall girl with long brown hair and large, thick glasses) would try to join in our games and would immediately be excluded, sometimes even chased away. It was taboo to even talk to “them.”

The rest of us were told that they were “mentally retarded.” That was all. Autism was not mentioned, nor Down’s Syndrome. No one explained what “retarded” really meant, and that not all of those children were retarded. No one tried to teach the rest of us to integrate them, to accept them, to think of them as kids. No teacher suggested that they had feelings like the rest of us. So we recoiled from them. I didn’t feel right about it, but at age eight I didn’t have the strength to stand up to other kids and say, “There’s nothing wrong with them! They want to have friends too!” I certainly couldn’t bring myself to taunt them with shouts of “Retard!” like many of my classmates did, but neither could I bring myself to stop the taunting. I just walked on by, pretending it didn’t concern me.

And now I have a child with autism. I remember when he was seven, hearing someone shout “Retard!” at him in my own front yard. I dashed out the front door and yelled at the boy who said it, “Don’t you dare call my son that! You need to leave now!” I wish I could have slapped that boy across the face. He must have come over because he wanted to use Nigel’s wagon. Or else he was just bored. I didn’t know what to make of it. Too many thoughts rushed through my mind. I wondered how many times Nigel had been called “retard” that I hadn’t heard, like at school.

Room 2 still stands out in my memory. I wonder about the school district’s protocol back then. Why the segregation? Was it fear? Laziness? I am glad that their ideas about students with disabilities have changed, but they have much farther to go for mainstreaming to be successful. Teach acceptance. Teach empathy. Is that so hard? Kids these days are taught about internet safety, recycling, birth control, and plenty of other non-academic subjects. Surely teaching them how to have respect for others, especially those who have disabilities, is at least as important. If we’re going to have more and more autistic kids mainstreamed into the public school system, they need to have the “free and appropriate education” that has been promised to them. Being excluded and called a retard is in no way appropriate. It’s time to retire the Room 2 mentality and make some real progress.

Those who live or work with autistic individuals know that transitions can be difficult. There are the big transitions, like starting a different school, moving to a new house, dealing with major schedule changes due to divorce, etc., or some other big change. They are the mountains that we sometimes have to climb. And they often feel insurmountable.

But what about the little transitions? The daily hurdles that for some autistic people cause such an upheaval? The minor changes that sometimes come up due to a cancellation? Even the regular transitions between daily activities can be difficult to navigate. A small part of me understands because of the way I feel about bathing and swimming. I love to be in the water, but I’d rather not experience the transitions involved in getting in and getting out. I’m cold when I first get in the shower, cold when I get out, and then I have to deal with wet hair and skin. My own little sensory issue? Probably. Of course after I’ve dried off and gotten dressed, I always love feeling clean and relaxed. But I take that feeling of not liking the transition and I apply that to how I deal with Nigel when he’s having trouble with a small transition. A little empathy goes a long way.

When he attended the middle school, he had trouble with transitioning from class to class. It wasn’t because he would forget where to go. It was because the halls were noisy and kids would come up to him and harass him and he’d get to his next class angry and the teacher would tell him to sit down and that only added to his negative frame of mind. It wasn’t because he didn’t want to change classes. He just had trouble with the transition. And the school wasn’t willing to let him leave class three minutes early to avoid that. Yet another reason why I decided to homeschool him.

Now that he’s home, he no longer has difficulty transitioning to different school subjects. But we still experience some trouble with transitioning between activities, especially if the new activity takes him away from Lego building, YouTube surfing, or movie watching. You would think that a teenage boy who eats non-stop would be happy to hear the phrase “Dinner’s ready!” and come running. Not so. His typical response is “That fast?!” in a disappointed tone. I have tried modeling more appropriate responses for him, such as “Thanks, Mom” or even “In a minute,” but it has become such a habit for him to say “That fast?!” that I can’t seem to break him of it.

But I often forget the all-important warnings. “Dinner is in 15 minutes,” and then “Dinner is in 5 minutes” to ease him into it. It’s hard to remember all the enabling things you have to do as a parent of a child with a disability, just so that things run smoothly. Even when you do them for so many years, you can sometimes forget. And I try not to think about the fact that he probably says “That fast?!” when he’s visiting a friend’s house and the friend’s parent says “Dinner’s ready!” Maybe next time he goes to a friend’s house, I’ll email the parent the link to this post. And they can read about how to manage their child’s high-maintenance, sometimes inappropriate friend! Or I’ll just apologize in advance for his apparent rudeness. 

I used to try to enforce a rule at the dinner table: no toys allowed after age 6. “Only little kids need toys at the table,” I’d say. But Nigel always had to bring a piece of whatever occupied him before dinner to the table: an action figure, a Lego creation, a stuffed animal, a magazine. It seemed to be the only way he could transition. And whenever we left the house, he did the same thing. He would keep a little something from home in his pocket and hold it periodically. Like his own way of saying, You can take it with you. So I finally realized, okay, this is what he needs. And I changed the no-toys-at-the-dinner-table rule to “No toys bigger than an apple at the dinner table,” and everyone’s a lot happier.

I think the bottom line is figuring out how to work with the little transitions. The big ones are a different story, but the little ones can be more manageable provided that you’re willing to act like an enabler. Let them bring something in the car or to the dinner table. Give notice when it’s nearing time for a change of activity, even dinner. Yeah, I wish I didn’t have to do that with a teenager. But when the goal is to make a transition smoother, and I find a way to do that, I’m just going to go with it and not worry about how much of an enabler that makes me.  The day will come when we’ll have to transition out of that mode, and I’ll deal with it then. I’m sure I’ll come up with something that works.

For many years I could not say that Nigel was autistic. I could not say, “My son is autistic.” I would readily tell people “My son has autism,” because to me that was different than calling him autistic. The autism, I accepted. To me, saying someone “has autism” puts the focus on the person rather than the disability. Saying my son “is autistic” makes it sound like the autism is his identity.

But it is. It’s part of his identity.

It took me so long to realize that and accept it. I used to tell friends and family, “We say that Nigel HAS autism rather than he IS autistic, just like you say that someone HAS Down syndrome rather than someone is ‘Down syndromic.’” I’m sure I sounded like I was stuck in some level of denial. I was willing to admit that my son had a disability, but not acknowledge that it was actually part of his personality. 

I’m not sure what changed. Maybe it was a subconscious need to fully process the way autism affected our family. About two years ago, I started saying, “My son is autistic” when mentioning him to strangers or acquaintances. And I was surprised to find that I actually felt comfortable saying it. Sometimes I would say it by myself, quietly, in my room. I would hear the words coming out of my mouth, and with them came a sense of something that resembled peace. Autism didn’t feel as much like this formidable disability when I used that different terminology, the one I had resisted for many years. The word I had told other people not to use: autistic. It was almost a relief that now I could actually say it: My son is autistic! I realized that I had finally truly accepted the autism present in our lives because I embraced it as part of my son’s identity, not just something that he “has.”

My realization was further supported by an interview I recently came across at Natural Learning Concepts, featuring Daniel Hawthorne, a high-functioning autistic adult who was non-verbal until the age of seven. Here is his response to the issue of having autism vs. being autistic:

Do you get upset if you’re called “autistic” rather than “a person with autism?”

“Actually, I prefer to think of myself as being autistic rather than having autism. Autism is pervasive; it affects every facet of my life.  It is not just something I have in the sense that one may have diabetes or epilepsy.  Autism affects the way I think, my personality, my abilities and much more, and I accept it.”

I have come to feel the same way about Nigel. I never thought of autism as a disease (like diabetes or epilepsy mentioned above), but I seemed to think I could refer to it as such, in saying it was something Nigel “had.” I have finally come to terms with the fact that it’s part of who he is. And whether he is able to achieve the high level of functioning that Daniel Hawthorne has, or if he stays the same, or even if he regresses, Nigel will always be the amazing person that he is - my autistic son.

Life with autism is full of acronyms. From the first IFSP (Individualized Family Service Plan) meeting and the use of PECS (Picture Exchange Communication System) to the last IEP (Individual Education Plan), we SPED (Special Education) parents are bombarded with a list of acronyms to learn and use. It seems like such an odd element of an already challenging existence.

I remember being at Nigel’s first IFSP meeting, when he was three. I felt overwhelmed and underinformed. Back in 1997, autism was not the buzzword it is now. Most parents of now-teens experienced untold frustration trying to research autism information, therapy, symptoms, etc. when their children were first diagnosed. The internet was not the resource it is today, and all the books I could find on autism were archaic, bleak, and (I felt at the time) of no help to me. My local Barnes & Noble had two books on autism: Let Me Hear Your Voice, by Catherine Maurice, and The Siege, by Clara Claiborne Clark. I flipped through both of them there in the store, got a lump in my throat, felt the desire to slip into denial (the ‘how could he be autistic? he smiles and lets me hug him!’ self-talk), and left. I did wind up reading those books at a later date, and I came to consider them an invaluable source of encouragement. Back then I wasn’t ready.

I went to that first meeting blind. The therapists started talking about PECS, SI (Sensory Integration), and OT (Occupational Therapy) and I was completely lost. It wasn’t until months later that I learned that the intensive program that Nigel was enrolled in was actually ABA (Applied Behavior Analysis) -based. I learned about various other therapies, including AIT (Auditory Integration Training), FC (Facilitated Communication), and later, the GF/CF (gluten-free/casein-free) diet. When I had internet service I looked up the DAN (Defeat Autism Now) program and joined ASA (Autism Society of America) and read about the federal Individuals with Disabilities Education Act (IDEA). I needed a glossary to keep them all straight.

Now when I go to my local Barnes & Noble, there is an entire section devoted to autism-related topics, not just two books mixed in the Special Needs shelf (yes, there was only a single shelf for all books on special needs children). And now on their website, under the category of Autism and Asperger’s Syndrome, there are 26 subtopics listed and 462 individual books available having to do with autism. That is amazing to me, and wonderful. And many of them have glossaries defining all the autism acronyms I’ve come to know and love.