Wednesday, April 23, 2008

April is Autism Awareness Month: Part 2

When our oldest son was 2, we stayed home a lot.

It was too exasperating to go anywhere. It wasn't because he didn't travel well; in fact, he would ride in the car for hours on end without making a sound. Once we reached our destination, we encountered problems, though.

Riley would enter a house with two goals in mind: find the nearest cupboard door and light switch. Unlike most toddlers, he had no interest in tearing out the contents of the cupboard. Instead, he would silently and endlessly open and close the door. If he could reach a light switch, he would flip it on and off, staring at the light all the while. Only when we tried to stop his behavior did he make a noise, and a tantrum ensued.

Holiday gatherings seemed to bring out the worst behavior. I joked that kids always behave badly around relatives that the parents are trying to impress; inside, I wondered if those social situations were just too overwhelming for him. During his first birthday party, he crawled under the table with the dog. At his second birthday party, he still wasn't responding when someone said his name. He opened one gift, a school bus. He turned it upside down and spun the wheels, seemingly oblivious to his cousins playing around him.

Still, he did not fit the definition of an autistic child, according to the professionals I consulted. Most of his behaviors could be explained away, and 10 years ago, higher functioning forms of autism were not well publicized.

Looking back, I can see signs from the first moment I met him. When my other babies were born, there was a moment of eye contact and connection within seconds of birth. Riley gazed at the wallpaper or at shadows in the room. His first smile was directed at a picture of a giraffe, not at a person. He arched his back away from the person holding him, he did not point at objects, and he did not seem to care which adult was holding him, even if it was a stranger.

Riley did not wave or say "bye bye." He was terrified of vacuum cleaners, school bells, buzzers, and other sudden, loud noises. As he grew, he seemed to lack all interest in children.

His speech was very slow to develop, and when it did, it was not typical. He would repeat words and phrases back to us, so that if we asked, "How old are you, Riley?" he would respond, "How old are you, Riley?" The term for this phenomenon is echolalia, and it was the first step in a long journey of teaching Riley how to communicate. Almost as soon as his speech developed, we began to wish it hadn't; he began to repeat phrases over and over again until we thought we would go crazy. He would often pick up lines from videos, and two that I remember distinctly from his echolalia period are "My sweet, sweet Petunia," and a line he posed to my sister when she was caring for him: "Do you want a piece of me?"

While the perseverative speech stage caused his parents a few meltdowns, it seemed to lessen Riley's frustration with the world. As he learned to communicate, he was less likely to have meltdowns and behavioral problems. The "stimming" behaviors like flicking his fingers in front of his eyes and humming constantly seemed to lessen as he became more proficient at speaking. We also learned to help him manage his sensory difficulties during this stage.

As he entered school, we were still working on communication issues such as pronoun use, part of which was tied to his inability to differentiate between genders. Several years later, we are still working on how to read faces and discern people's moods. He sometimes has to ask a person if he or she is teasing or joking, and we work on social situations at home. Tonight, for example, he announced at supper that "maybe this meat will taste better if I dump a whole bunch of salt on it." I explained that he might not want to say things like that at someone else's table because it might hurt their feelings. The thought had never occurred to him.

The reason I'm sharing this story is because April is Autism Awareness Month, and someone just might see a similarity in this description that is enough for them to follow up on a nagging feeling about someone they love. We hesitated to label our child, but there were two moments that happened when he was 3 that propelled me into action.

First, I was shopping in a small gift store when the sales clerk asked Riley, “How old are you?” Even though Riley knew the answer and had answered the question from me before, he just began screaming at the stranger as if he were in pain. The final straw was on a trip to visit my sister. We went to the Cracker Barrel to eat lunch. My sister’s children, one of whom is the same age as Riley, went through the gift shop and sat down at one of the tables. My son stopped at the flashing traffic light in the gift shop and was fixated. He would not move. I begged, pleaded, and bribed to no avail. I had to drag him screaming through the restaurant and sit him down, and he sobbed hysterically for several minutes. I knew I had to get him some help.

My final autism post this month will address how far we have come since those days and how autism, or Asperger's Syndrome in our case, affects our family now. It has been more than six years since the official diagnosis of autism, and every one of those days has been a learning experience.


Beth from the Funny Farm said...

Good job to you for getting the diagnosis figured out.

Have a great day!

Anonymous said...

You are a wonderful Momma and Riley's best advocate.
Many Blessings,
Jennifer D.

Happy Mommy said...

I am sure you have had a long road! Thank God, you paid attention and were able to get the help he needed to become a healthy, productive little boy.

Andrea said...

I have a good friend who's boy is autistic. He is full of energy and full of love. It's a blessing to know him and to be his friend. A wonderful post!!

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