Most children with moderate or high-functioning autism/Asperger's come to a developmental point when they realize there are things "different" about their lives. They may not be able to understand what exactly is different, but they can recognize that they have therapies or appointments that other children do not. Or they may notice that they don't like the same things that other children enjoy. Or they may wonder what their parents are talking about with the doctors and therapists they bring them to visit. Children with autism are not going to have a lot of insight, so they won't notice that their behavior is different or that they think differently. Often they might feel that having to do all these extra things, or other people not liking what they like, or not following their perception of the rules, is "unfair" and a clear violation of their rights. Often, when told for the first time that they have been given a diagnosis with the label autism, they protest and honestly ask "Why? There's nothing wrong with me."
We started talking about Frankie's autism openly from the time he was diagnosed. In the same way that we discussed openly his and his brother's adoption, we discussed his autism. When he was younger and started to talk, he didn't want to talk about the "autism." He would not acknowledge the word at all. What he did start to talk about were the other children that were in his occupational therapy groups, social groups, and pull-out classes at school. He had always been in inclusion settings so even though he couldn't see that there might be something different with him, he did see that there was something different about these other children. He began to talk about their "troubles." He could see that they had difficulties and were struggling with walking, talking, and getting along and he would make comments such as, "He has troubles," or "She has more troubles than he does."
When he began to make these observations we began to talk to him about his troubles. At first he would deny that he had troubles but, gradually, as we would point out difficulties he had - giving very concrete examples and pointing them out in an appropriate and timely fashion - he started to accept that he had his own troubles. Of course we always pointed out what he was good at, too. He began to make his own comparisons, observing, "Emma has more trouble than me and I have more trouble than Graham." He would say of his brother McCrae, "I am stronger than 'Crae and he has trouble with not eating."
Over time, as Kristina and Adam start to do in this episode of "Parenthood," we began to refine Frankie's understanding of his troubles. As Frankie approached 11 and 12, he was able to tell us that autism meant he had trouble with "getting stuck on things, making new friends, and talking." For quite a while he wouldn't talk about having autism, but, as he developed friendships with other boys with autism - who were also beginning to understand their own "troubles" - he would share that he had autism and they would compare "troubles."
Today, Frankie is accepting of his autism diagnosis - although he will sometimes state "I wish I wasn't born with autism." Or he will say "I am not doing autism today." He has also learned to joke about it and put things into perspective. He knows autism makes him "good at chess and computers." He will also tell me "You have autism," and when I ask him why he thinks I have autism, he will say, "Because you say the same thing over and over again." I reply this is because "I am a parent, and you children don't listen the first time..."
For children with autism, developing a realistic sense of their autism diagnosis to the best of their understanding is empowering for them and for the people in their lives who strive to guide them and love them. Having a name for something is a powerful tool for navigating the world - a world that for someone with autism is often a confusing place where you can use all the power you can get.
Written by Roy Q. Sanders, M.D.