From Chapter 2, He Doesn't Know What Angels Are: Autism Viewed Through Children's Eyes

What Did They Talk About?

Although the primary focus of this study was to assess how children think about autism at different ages rather than what they think about autism at different ages, a brief examination of the content of their responses confirmed our suspicions that what parents share and what children grasp from an interaction may be quite different. The children we talked to often demonstrated either a lack of information or misinformation about autism. For example, approximately one out of every five children claimed that they had never heard the word "autism." This included almost half of the five- through six-year olds, about a fifth of seven through ten-year-olds, and one of eleven through seventeen-year-olds. Because almost every one of the parents had predicted that their child would be familiar with this word, it is likely that the term had been mentioned by parents and forgotten by the child.

Similarly, siblings demonstrated a surprising degree of misinformation. Approximately a quarter of the children either thought that autism could be contagious, or were not sure whether or not it could be contagious. While almost all of the children in the oldest age group were aware that autism could not be "caught," only about half of the seven through ten-year-olds shared this knowledge. A question then arises as to whether these children believe that they might catch autism from their sibling. The following excerpt from an interview with an eight-year-old boy exemplifies the reasoning that children might use to explain why they haven't yet caught the disorder from their sibling. This boy had not been familiar with the term "autism," but instead described his brother as "wacky."

Interviewer: Do you know if it is catching? If M. has something that makes him able to talk and act "wacky" sometimes, can you catch it?
Sibling: Yeah.
Interviewer: You could? How would you catch it?
Sibling: By staying too close to him.
Interviewer: So if you're close to him for a long time, you could get "wacky" too?
Sibling: Yeah.
Interviewer: Do you know anybody that ever happened to?
Sibling: Um, no.
Interviewer: Is there any way that you can keep from getting "wacky" like that too?
Sibling: Uh, by not staying too close to him.
Interviewer: You stay close to him a lot, right?
Sibling: Yeah.
Interviewer: Do you worry about that sometimes, that you could catch it?
Sibling: Mmmmm . . . No, 'Cause I'm always in school.
Interviewer: Because of what?
Sibling: 'Cause I'm always in school and he comes home early before me.
Interviewer: So you're not close to him enough to catch it?
Sibling:No.
Interviewer: But if you were home all day with him, then you could catch it?
Sibling: Yeah.

This child's reasoning provides an excellent example of the detailed myths that a sibling might create when factual information was either not offered or not understood. However, a sibling might also hold a less detailed belief. Consider the following excerpt from an interview with a sibling who had just turned five years old:

Interviewer: Do you know if it's contagious? Can you catch it?
Sibling: Yes.
Interviewer: You can catch it? And what happens if you catch it?
Sibling: If you catch it that means that you're autism, and if you catch it that you're three years old and you like to be in that school.
Interviewer: Anything else?
Sibling: Um, no.
Interviewer: Can you do something to keep from catching it? Can you do something so that you can't get it?
Sibling: Yeah.
Interviewer: What can you do?
Sibling: You can stay away from it.
Interviewer: So, do you have to stay away from your sister so you don't catch it?
Sibling: Yeah.
Interviewer: Can she make somebody have it?
Sibling: Yeah.
Interviewer: But it's only if you get close to her or something?
Sibling: Yeah.
Interviewer: How come you guys didn't catch it?
Sibling: We didn't catch it because if we get close to her, it just didn't blow up on us.
Interviewer: So it could still happen?
Sibling: Yeah.

For both of the siblings described above, providing accurate, developmentally appropriate information may increase the amount of time that they spend with their brother or sister with autism. In turn, this may allow more opportunities for mutually reinforcing interactions. See the next chapter for suggestions about helping your children understand autism.