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 at that age. It should be a gradual process, giving them more information as they get older and can understand more. I never expected my first talk with Eric about his autism to be the only talk. I knew his learning about autism and how it affects him would be an ongoing process. Many adults on the autism spectrum have spoken about the issue of when they were told. They often report that they knew they were different even as a young child but didn’t know why. Several adults I have heard speak have said it was harder for them growing up without a diagnosis: something that would explain to them why they couldn’t seem to fit in.
Of course, many individuals with high-functioning autism or Asperger Syndrome may not get a diagnosis until they are older. As a young adult or adult they are often painfully aware of their differences and a diagnosis provides an explanation. They may have been through a long list of other diagnoses before getting the one that fits. In these situations, telling them about the diagnosis is not an issue. They are old enough to be involved in the whole evaluation and diagnosis process and, one hopes, are hearing about the diagnosis directly from the physician or psychologist.
Telling Eric and his sister was one of the hardest things I have ever done. I worried about it for a long time before I actually did it, so it was a great relief when it was over and we were all fine. In the talk with Eric and later with Sarah, I concentrated on how everyone is different. I used myself and their father and each of them as examples. I talked about how some people can do some things better than others, pointing out what each of them could do well and what was harder for them. I used the word “autism” when I spoke to both children because they were old enough to understand. I explained that Eric’s autism means his brain is wired a little differently and that is why he often prefers to play alone or gets upset sometimes in new situations. After telling them both, I was still worried about the comments they might hear at school, but felt that they were better prepared to deal with them. They also knew that they could come to me and their father and talk about it whenever they had questions.
There were other ways that I tried to prepare Eric for the transition to full inclusion in the third grade. We visited the school during the summer and explored the campus and playground. We talked about how great it would be to have Eric and his sister riding on the same bus to school. We tried to build up the experience and how wonderful it was going to be. Because we were treating it as an adventure, Eric was excited.
Eric’s third-grade teacher had been teaching for many years. She was nice and seemed like a good teacher, but it became clear very soon after school started that she was not comfortable having Eric in her class. The notes started coming home: his desk is messy, he doesn’t write his math problems on the lines properly. (It didn’t matter that he got all the answers correct.) Then there was the phone call one night when she said to me, “Eric is awfully small for his age. Don’t you think he would be better off in second grade?” I reminded her that he had already mastered the second-grade curriculum and third grade was where he should be.
I tried to understand her concerns but it was hard. Eric was probably her easiest student. He always followed the rules, he never talked in class or disrupted the class in any way, and he always did the work required of him. I think the teacher was worried about what Eric might do. After five months of my trying to convince her that Eric was not going to suddenly flip out in her class, she called me at home one night. She had watched a television show on facilitated communication that featured several severely autistic children. She was moved by the show and said to me, “Eric is doing really quite well, isn’t he?” After almost five months of trying to convince her of this same thing, she finally got it. From that point on, the teacher was more understanding and supportive. She actually became so supportive and protective that she didn’t want Eric to fail at anything. I had to remind her to challenge him and to let him try new things even if he failed.
The primary support for Eric during his years of inclusion in regular education was the autism outreach teacher from our school system. This person’s responsibility was to support those students on the autism spectrum who were not in autism-specific classrooms. The students could be in other special education classrooms or in regular education classrooms. This teacher was available to provide information about autism to the teachers and to the other children in the class if needed.
For the first two years of full inclusion, Eric’s autism outreach teacher was his former teacher in the self-contained autism class. When they disbanded the class, she became the outreach teacher. It was wonderful to have her to help Eric through this transition to full inclusion. She knew him well and she was very knowledgeable about autism. She was also an excellent ambassador to the regular education teachers. She could go into the classroom and set up schedules or organizational help for the students. She could also work with the students one-to-one occasionally if they needed the extra help with academics. The level of support she provided was individualized for each student depending on their needs. For Eric, she primarily offered support to the teachers and education about the autism spectrum and about Eric’s individual needs. She went into the classroom once a week to work with Eric on some of the academic work. She also came to the class once a week to help facilitate social experiences for Eric on the playground.
Before her change of heart, Eric’s third-grade teacher was not happy about what Eric did on the playground. Instead of playing with the other children, he would walk back and forth and quietly talk to himself. He was very happy when he did this and I felt that he needed this time to himself during recess. In my opinion he was doing a great job focusing in the classroom and holding himself together. If he wanted to do this during
