Socially, Eric was very withdrawn.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 it is important to look at each individual child, each individual school and what it has to offer, and to be creative in your placement decision for your child. If your son or daughter can be fully included and be successful, that’s wonderful. However, some students on the autism spectrum may have difficulties starting school in the often unstructured setting of a large kindergarten class. Some combination of time in a smaller class and time in regular education classes may be more appropriate for these students. A self-contained special education class, with a good teacher who understands autism, can be an option for students with high-functioning autism or Asperger Syndrome. Starting in such a class should not cause the student to lose the opportunity to be in a regular education class in the future.
Unfortunately, our school system decided the cost of this special class for high-functioning kids with autism was too high, and so they ended it. Eric was doing well in the mainstreamed setting, so it was decided he would be fully included in a regular third-grade class at his home school the following school year. This was a huge change for Eric—new school, new big yellow bus, and a new teacher who knew nothing about autism. On the positive side, for the first time Eric would be in his home school with his sister and the children in our neighborhood.
Eric had been fairly sheltered during his years in the self-contained class. Full inclusion was going to bring new issues. I was concerned that other students would notice Eric’s differences and might say hurtful things to him or to his sister. We had not told Eric about his autism diagnosis, and we decided it was now time to talk to him and his sister about it. Eric was seven years old and his sister was five.
Telling your child they have a disability can be very hard. A parent’s reluctance to tell their child they have autism or Asperger Syndrome is very understandable. They worry that their child will feel bad about themselves, that their life will be changed forever. Parents may not realize what their children are already sensing and the relief they may feel to know the reason for their differences. As difficult as it may be to tell them, parents should consider the child’s right to know.
Knowing when to tell them and what to tell them depends on the child—their ability to understand, their need to know, and the impact it can have on them. Some parents choose to tell their child about their autism when they are very young and others wait until their child is older. Some parents wait until a problem comes up or until the child asks them why they are different or why they don’t have any friends. I always think of it as being like the “sex talk.” You know it’s time to talk to the child when they start asking questions. Then you tell them at the level they can understand