Tag Archives: acceptance

Scouts Are the Best

Last night Nigel had a Scout meeting. I was a bit apprehensive because the last meeting did not go well, meaning Nigel’s behavior. And because I could not pinpoint what had caused his step backward, I worried that he might continue down that road.

But as I have come to learn, autism is nothing if not unpredictable. Inconsistent. And so I shouldn’t have been surprised when Nigel did really well at the meeting last night. He didn’t interrupt anyone, he only got in someone’s face once, and it was brief, he participated and paid attention. He even requested, appropriately, to show the other Scouts something he had brought with him. He needed to bring it in from the car, and the Scoutmaster said that he could do that near the end of the meeting.

And that’s when I got a little nervous. He wanted to show them a little stuffed animal toy that he had received for his recent fourteenth birthday. It was Gizmo, from the movie Gremlins, and he had barely let it out of his sight since he received it Friday night. He had been sleeping with it every night; he brought it with him to his social skills class on Monday. I knew that someone with an emotional age of eight or nine couldn’t realize that typical twelve- to fifteen-year-olds would not find his little stuffed animal to be nearly as intriguing as he did. I wondered what sort of a response to expect from them.

When the time came, Nigel went out to the car and retrieved Gizmo. He reentered the room with it hidden under his jacket and made a big deal out of keeping it a secret until he was ready to reveal it. Of course the boys were wondering what he had under his jacket. A fascinating geode? A live animal? They kept prompting him to show them, and finally he did. I held my breath.

Gizmo

I needn’t have worried. Once he identified what it was, they all said, “That’s cool, Nigel,” and he took it around the room so all of them could look at it, which they politely did. They did not speak to him in a patronizing manner. They did not roll their eyes or make disparaging remarks. They got it. They realized that this was something important to Nigel, and they were supportive. And I wanted to hug all of them.

So here’s a big shout-out to the Scouts of Troop 535 and their parents: You guys are so great. You make Nigel feel accepted, and he appreciates it, and so do I. Thanks so much for your patience and understanding. It means more than you know.

A Secret

For years I had a secret that I was reluctant to tell, and rarely did. After Neil’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 Neil 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 Neil 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 Neil 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 Neil’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.

The Autism Fairy

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.

Having Autism Vs. Being Autistic

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.