I have just spent the last week in Chennai, India. Four of us from the Marcus Autism Center have been consulting for a small, wonderful school for children with autism called the Chrysalis School. The most striking observations have been 1) that autism looks the same here as it does in the U.S., and 2) that parents have the same questions and concerns in India as parents in the U.S. This week's episode of "Parenthood" brings several of those concerns into focus.
The most crucial concern highlighted by this episode is the fact that children with autism are different from typical children. They may look the same and, in many ways, may seem the same, but there is a fundamental difference in how they interact with the world and the "paychecks" they derive from their interaction with the world. For most children of Max's age, wanting to please and engage their grandfather and enjoy him enjoying them would be part of the experience of going camping with granddad. But for a child with autism, the fundamental disability (regardless of the level of function) is a striking, sometimes profound difficulty connecting with other people and allowing other people to connect with them - even when the other person is a parent, grandparent or other special person. This is the essential disability of autism. An argument can be made that all other difficulties seen in autism derive from this central aspect of the disorder.
This past week in India, we taught the concept that the paycheck comes after the change in behavior, and that the paycheck for children with autism can be very different than the paychecks for typical children. Typical children, of course, also respond to paychecks but often these are more intuitive. For a typical child, the paycheck may indeed be pleasing granddad. For Max, the paycheck is the chance to catch lacewings. Moreover, the paychecks for each individual child with autism can be very different. For Frankie, the paycheck might be chess or time with his chickens. For other children, time with an electronic game might be just the paycheck they want. But in each of these situations - whether it is the emotional satisfaction of connecting with granddad or the Yugioh cards - the paycheck must come after, and not before the desired behavior.
There is one last thing that I want to mention: When raising a child with autism, it isn't necessary to change your whole life to accommodate the child's odd needs and eccentricities, or even to tolerate their sometimes bizarre and perhaps aggressive behaviors. Parents and others will often do just that, thereby becoming prisoners to their child's autism. They let the autism win.
Despite perhaps feeling that you are being kind to a child with autism by "giving him everything he wants," if you are not using paychecks that teach him how to be more engaged with the world, you are actually harming him.
This is probably the hardest concept for people to grasp about dealing with autism. If you don't modify your behavior to modify the behavior of the child with autism - if you don't use techniques such as paychecks for appropriate behaviors and appropriate interactions - you will wind up losing your child to the autism.
Written by Roy Q. Sanders, M.D.