Teen Autism

Man, what a day. Just when I think things are going pretty well, thinking I can breathe a little easier, the phone rings. As an introvert, I don’t get too excited when the phone rings anyway. But when Nigel’s not home and the phone rings, I get nervous.

This afternoon, Nigel wanted to ride his bike to a neighborhood kid’s house a couple of blocks away, so I said sure, just be careful and be home by five. Less than 45 minutes later, the phone rang and it was the elementary school about half a mile away. Apparently the kid he went to visit wanted to hang out at the school, so Nigel went with him, and then he proceeded to get into an argument with the kids in the after-school club there. One of the girls said something that upset Nigel, and things escalated to the point where Nigel was so agitated that he threatened her by saying he would tear her arms and legs off, after she had called him a second-grader. I told the school I’d be there in five minutes.

If I had a dollar for every time all the schools over the years called me about Nigel’s disruptive behavior, I could certainly pay for a much-needed massage for myself. You would think after all these years that I would be used to it, that it wouldn’t rattle me the way that it does. But every time it happens I feel like I have a brick in my gut and a sense of hopelessness floods my veins. I’m so tired of it. I’m so tired of having to apologize and explain my son’s behavior to someone and wondering if it will ever change.

But this time was different. This time Nigel apologized, and without prompting. To the adult moderator of the club he said, “I’m sorry, I have autism and sometimes I can’t control my anger.” And then, on his own, he went and apologized to the girl, told her that what she said had upset him, and she apologized to him. It was like something out of a movie. Something I wouldn’t have dared to dream of.

And the brick was gone and I thought, Wow, he’s actually starting to get it. Then we went home and I talked with him about what had happened, and how proud I was of him that he had apologized. He still needs to do a lot of work in the area of letting go of an argument and the feeling that he has to “get back at someone” when they upset him, and remembering that it’s never okay to threaten people. And I know I have to prepare myself for many more confrontations and ensuing phone calls. But we made progress today. Development is always slow, but it’s there. And so is my faith in him.

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.

When I was in high school I had a good friend I’ll call Eddy. Eddy and I were in several of the same classes since freshman year, and by junior year, we had become pretty close. We never dated, but we talked a lot, and one day during class he ran out, visibly upset, and the teacher suggested I go check on him. I found him sitting on the steps of the side entrance of the building, and I sat next to him and gave him a hug. He told me that he was coming to terms with the fact that he was gay. He didn’t know how to tell anyone; he felt confused and a little scared. I assured him I would be there for him.

Months later, Eddy felt better and more sure of himself. His family had responded positively to the news and his friends supported him. He said that he couldn’t believe that it was happening to him. He had read and heard about people being gay, but until he acknowledged that he was, he never realized what it would be like, how it would affect him. He said that he felt like now he belonged to The Gay Club. And that it would determine the rest of his life.

I certainly didn’t feel it at first, but over the years I have come to realize that with my son’s diagnosis I was granted lifetime membership in what I call The Autism Club. I had read and heard about autism, but I had no idea what it was like until I came to live with it. I couldn’t believe it was happening to me. I never realized how it would affect me. It will continue to determine the rest of my life.

I’m sure it’s the same for any parent of a child with a disability. You start going to all the IEP meetings, the team meetings with therapists, the therapy appointments, dealing with trying to take your child out in public, finding a good fit with a program or school and changing frequently when it doesn’t fit. You come to terms with how the disability affects all the family members, now and in the future. You realize that your lives are going to be different than those of your neighbors, and even your friends. You wonder how it will affect your other child, having a special needs sibling.

So you go to the meetings, you do what you need to do, you give attention and show empathy to your other child, and somehow, as the years go by you realize that you are functioning, you are doing this. Life goes on. It’s different, it’s not how you thought it would be, not what you would have wished for yourself and your children, but it’s okay.

Some might think I’m trivializing the experience by calling it The Autism Club. It is in no way trivial, and I know that only too well. It affects every fiber of my being. But I have to keep reminding myself that there are millions of parents of autistic kids, all going through what I go through. And that makes me feel like we’re all part of some special club or association. We didn’t ask to join. But we’re making the best of it. And it’s good to know that we’re not alone.

Every few years I undergo a relatively drastic hairstyle change. Sometimes it is circumstantial: I am experiencing major changes in some other area of my life, and my hairstyle change is symbolic of that. At other times it’s because my hair is down to my lower back, and it’s just too much work at that length! Off with it!

Last week my hair was reaching beyond the middle of my back, the sun was out, and I had it cut. I think this time it was as much because it was too long as it was a metaphor for the changes going on in my life. I came to the realization a few months ago that Nigel can no longer be mainstreamed, as he was (with an extensive support system) for four years. I radically altered my life, my schedule, my finances, and my ideas so that I could wrap my mind around the concept of homeschooling him, and found ways to make it happen. (I plan to write about that subject in detail for a future post.) And now I am doing it. I drastically cut back on my hours in the office at my job, I found some work I can do from home, and I am now my son’s teacher.

It was a huge change, and I am still reeling from it, even though it is positive. It is scary financially, since I am a single parent. And it comes with so many other adjustments that must be made: emotional, physical, social. So when I’m at the hair salon, and the other patrons and stylists who witness my middle-of-the-back hair being cut into a chin-length shattered bob comment on how brave I am to do that, I say It’s only hair.

Getting my hair cut short doesn’t make me brave. Being a single parent? Sometimes brave. Raising a child with autism? Usually. Homeschooling my autistic son while being a single parent? Reducing my work hours from 30 hours a week to 6, thus reducing my income?

And then I think of Nigel, trying to navigate middle school without any support system in place (how could I have let the IEP ‘team’ convince me that he would be fine with that?!) and dealing with the constant harassment and bullying he experienced, just trying to get through his day, pulling out his hair because of the eternal state of anxiety he was in, and I know. He is the brave one. He was brave to make that first leap to try to learn to talk by repeating lines from videos, trying to fit the lines within the context of the real situation. He was brave to learn how to filter all the mechanical sounds that were agonizing to him. He was brave to want to take the regular school bus, because he wanted “to be like everybody else.” That’s all he wanted, and they treated him so terribly. Yet he went back, every day, and he always tried so hard. Finally, he reached his limit, and he begged me to homeschool him. That was brave too.

Maybe the little things like getting my hair cut short are brave. But when you live with autism, it puts a different perspective on things. And it makes you define bravery in a whole new way.