Among the more important things we do for our kids who have autism, or other special need, is make decisions about their treatment and education — sometimes long after most other kids are down the road of self-determination.
As Sam has grown and matured, he’s been able to make many more decisions for himself. I serve, more often than not, as a backstop. For example, he’s going to a horse show next weekend with some friends. The person organizing the trip checked with me about details to make sure the plans really do work for Sam. Sam doesn’t say yes to everything — he can anticipate problems in a lot of situations. What’s different for him, unlike Michael or Paige, is he doesn’t always problem-solve “on the fly” as well. Fortunately, the person organizing the trip is experienced. I anticipate a good time will be had by all.
For years, Mark and I rather instinctively decided some things on Sam’s behalf that we hoped would be the most appropriate and ethical thing we could choose. Call it “on the fly,” if you will.
When Shahla Alai-Rosales, an applied behavior analysis professor at the University of North Texas, shared her decision-making model with me, I was so impressed. It’s her area of expertise, of course. And she thinks about ABA professionals with the rubric, not parents. But all six guideposts for ethical decision-making are good for us parents, too. When we’re fully conscious of the decisions we’re making, we have a better chance of making them good ones.
Shahla’s first guidepost is to recognize that the quality of the information you have will affect the quality of your decision. This is the most important guidepost. Assuring the quality of that information comes in three parts:
1. You have to know what resources are available to you to make a good decision. There are support networks and training options for us, no matter what age our child is. I’ve mentioned many of them elsewhere in this blog (search on decision-making). You need to know what your funding options are. There are government programs, and sometimes there is support for local programs. You need to know all your treatment options.
2. You have to be able to evaluate those resources to make good decisions. There is a lot of help out there that is cutting edge. Some of it is very good. Some of it is garbage. But you can ask about the evidence; and ask where the work fits in the greater body of research. Ask the treatment providers how they are going to measure their progress, and how they will make adjustments, if needed. Well-thought answers to those questions will help you determine the quality of the information.
3. Keep in mind your rights and responsibilities as a parent; and keep your child’s right to happiness and a childhood in mind, too. Sometimes it’s easier, when you think about your responsibilities first to see where your rights, and your child’s rights, fit in. Don’t forget that personal liberties and self-determination are part of a greater social fabric.