cried. He ate well and he slept well. As a toddler he never got into anything he shouldn’t have. He never emptied things out of a cabinet and never climbed on anything. He never colored on the walls or picked up something yucky off the floor and put it in his mouth. He loved to sit in your lap and look at books and could do this for hours. He was enthralled with Sesame Street, especially the segments about letters and numbers. At the age of one and a half he was bringing us letter blocks and telling us the letter and then naming something that started with that letter. We thought he must be brilliant.
The phone call came when Eric was two and a half. It was his preschool teacher. She was concerned because Eric wasn’t responding when she called his name and he was ignoring the other children in the class. She thought he might have a hearing problem. I knew there was nothing wrong with his hearing. He always covered his ears whenever there was a loud noise. If anything, I thought he had exceptionally good hearing. She must be wrong.
She was wrong about the hearing, but she was right to be concerned. Thanks to that perceptive teacher, we started the process of finding out what was different about Eric. First there was a speech and hearing evaluation (“Have you ever heard of autism?”). Then there was a trip to our pediatrician (“Look at him. He’s talking. If he has autism then I’m the Pope!”). Finally there was an evaluation by a developmental pediatrician who kindly told us about our son’s autism. The process was painful, but it made us recognize that there was a problem, and we started getting help for Eric. For that I am eternally grateful for that phone call from his preschool teacher.
The grief a parent feels when they find out their child has a disability is different for everyone. For me it was a deep, physical pain deep inside my chest, a weight that was always there. I cried for days until I couldn’t cry anymore. I avoided the people who meant the most to me. They wanted to help and wanted to support me but I wasn’t able to let them in. I couldn’t talk about it and I didn’t want anyone to see me so vulnerable. Eventually I realized that I had to take control of my life again. My six-week-old daughter, my husband, and Eric needed me. Fortunately I had the luxury of being a stay-at-home mom and dealt with my grief by focusing on learning more about autism and taking Eric to different therapies. I was also very fortunate to have my family and my husband’s family nearby and they helped us physically and emotionally through those early months.
At age three Eric had language and knew many words but he only used his words to name things, mostly in books or on TV. He didn’t use his words to communicate with us. He was very echolalic and would repeat back my questions instead of answering yes or no. He could recite the complete dialogue of his favorite video but he couldn’t tell me what he wanted. His receptive language was also delayed. He didn’t understand much of what people said to him and had difficulty following simple directions.
Socially, Eric was very withdrawn. He was affectionate with his father and me but completely ignored other children and most people around him. He never showed the typical jealousy towards his baby sister and rarely paid any attention to her at all. He was very happy by himself. I used to call it Eric’s “phasing out”—when he would look off into the distance and smile and I knew he had left us and was thinking about a book or video he enjoyed. He always had this great ability to block out things that were going on around him. One day during a thunderstorm, our house was struck by lightning. The electricity in half of the house went out, but not in the room where Eric was watching a video. There was no obvious fire, but the firemen were called and they came to check for possible fires smoldering in the attic or in the walls. Here was Eric, watching his video, while numerous large, loud men in full firefighter gear—hats, coats, boots, axes, etc.—marched through the room he was in. Eric completely ignored them. If I hadn’t already known something was wrong, I would have definitely known then.
One of the hardest things to deal with in the early years was Eric’s routines. He had a routine for eating, getting ready for bed, getting in the car, reading books, for just about everything. If for some reason the routine was interrupted or changed, Eric would get very upset. He would cry non-stop, sometimes for hours. The reasons for his routines weren’t often obvious to anyone else. There seemed to be some sort of plan in his head of how things were supposed to happen. When these routines were messed up, I would have no idea what was upsetting him and he couldn’t tell me. When Eric was about four years old, we took a ferry ride while at the beach. Soon after the ferry left the dock to start across the bay, Eric became very upset and started screaming “Start over, start over!” Nothing could calm him the whole ride across the bay. In his mind, something happened differently than he expected. Actually he missed the start of the boat moving away from the dock, so he wanted it to start over, like a video. These behaviors were very difficult to deal with, especially in public, and we tried to avoid them whenever we could. During those years our family had very little spontaneity in our lives. We always had to think ahead, how will Eric react to this?
During the first few years following the diagnosis, I felt like we were living in our car. We were on the go constantly to two different preschools, a church preschool for “typical” kids and a Speech and Hearing preschool. We also had speech therapy at our local elementary school, and private occupational therapy and speech therapy once a week. Eric and I also had weekly sessions at Division TEACCH (Treatment and Education of Autistic and other Communication handicapped CHildren and adults). Eric’s therapies and schools were very time-consuming. I was also trying to work with him at home whenever I could. Getting involved in Eric’s therapies was my way of coping. In a way it was my own therapy that helped me survive the early years. I needed to feel like I was doing something to help him. I had to have more control over this autism that had invaded our lives.
Elementary school
Our life calmed down quite a bit when Eric started attending public school. He entered a self-contained autism class for elementary school-aged children with high-functioning autism. There were five children, a teacher, and an aide in the classroom. The kids were various ages and Eric, a small five-year-old, was tiny compared to the eight-and nine-year-olds in the class. All the children had some language. They varied quite a bit in their academic abilities and in behaviors.
These were probably the best years of school for Eric. The teacher and aide were both well trained in autism and they obviously cared for the children in the class. Because it was a small class, there were opportunities for one-to-one instruction with the teachers. Social situations were creatively set up in the classroom for the students so they could practice their social skills in a structured environment. The academics were individualized for each student based on their skills and needs. Even though the classroom was not close to my home and I had to transport Eric there each day, it was worth it to have him in this wonderful learning environment.
The teacher spent a great deal of time educating the other teachers and administrators at the school about her students and about autism. She developed a good relationship with the regular education teachers. She would find the ones who wanted her students in their classes and weren’t afraid to work with these children. When a student was ready to be mainstreamed into the regular education class, the teacher or aide from the autism class would go with the student. They would gradually spend longer periods of time in the classroom as the student adjusted to it. The autism class teacher would gradually reduce her time in the regular education class, allowing the student to become more independent. By the end of Eric’s second year in this class, he was being mainstreamed out successfully for almost half of his school day.
I am often asked by other parents of children with high-functioning autism or Asperger Syndrome about Eric’s early experiences in school. I share with them how important the self-contained autism class experience was in preparing Eric for future mainstreaming and inclusion. Frequently parents express their desire for their child to be fully included from the start and not relegated to special education. There is an assumption by many that if our children are in self-contained special education classes the prognosis won’t be as good. Students on the autism spectrum do not need to be in regular education classes with “typical” kids to learn and grow. I think
