Many, many parents of children with autism, especially children who are able to engage in social conversation, ask me whether they should tell their child that he has or had autism. I'm not really sure what the answer to this question is, but I do have some general thoughts on the matter, having observed some situations where this issue has arisen.
First, discussing a child's disability is an individual family's decision and often relates to just how much the child wants to know. My general feeling (and I must say that this is only a feeling, not based on any data) is that since we really don't know what autism is at this point, I think we may want to focus on symptoms and discuss areas of weakness and strength with our children. That is, like this book, you may want to consider discussing specific areas of your child's development, rather than labeling your child.
Let me give you some examples. Mia's mother complained that Mia sometimes came home saying that she just didn't feel like she was part of the social clique at school. Her mother asked whether this would be a good time to tell her that she had autism as a child and still continues to demonstrate some minor symptoms. I suggested that since she was so mildly affected, her mother just discuss her strengths and weaknesses. A few weeks later, when I was driving Mia in the car, we were discussing her little brother, and she said, "Avery learned to talk early, and I learned to talk late, but I learned how to read really early." These were the facts, and she seemed very comfortable with them. Presenting Mia with the information by discussing not only her challenges but also her strengths and pointing out that every child has strong and weak areas did not exacerbate her feelings of isolation and being different.
In contrast, we had a brilliant graduate student in our clinical psychology program who had received intervention in our center when she was in preschool and during the elementary school years. Although she excelled in college and graduate school, had a large group of friends, and was one of the nicest people you could ever know, her parents told her she had autism as a child, and she always worried about what was wrong with her brain. In fact, she was so stressed about it that she couldn't work with anyone who had autism.
However, not every child has difficulty with the diagnosis. We worked with one adolescent girl who had been in counseling all her life, and had a whole slew of psychological labels applied to her by various doctors for almost a decade. Finally, when she was fourteen a psychiatrist suggested that she had Asperger's syndrome, and that's how I ended up seeing her. One night I was talking to her mom on the phone, and she picked up the extension and listened in from the other room. She confronted her mother, who decided to show her my report. The report had very specific areas she needed to work on, such as responding empathetically to others, improving eye contact, decreasing inappropriate body posturing during conversations, and so on. But the important thing was that each area had effective interventions. This particular child was actually relieved to understand what her disability was, and was also extremely motivated to learn specific ways to interact with others, to engage in interesting conversations, and to address each symptom head on. So, for her, it was quite helpful to know specifically what the disability was.
More on: Learning Differences
From Overcoming Autism by Lynn Kern Koegel, Ph.D. and Claire LaZebnik. Copyright © 2004. Used by arrangement with Penguin Group (USA) Inc.
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