Continuing this discussion about making the best decisions to protect quality of life for our children …

The second guidepost is knowing that the skills and expertise of the people in our lives will have an effect on the outcomes.

Like physicians — whose oath requires them first to do no harm — nearly every professional has ethical guidelines. (We journalists do, too, although critics sometimes accuse us of the opposite when they don’t like what we print.) If you know the ethical guidelines for the professionals in your child’s life, it helps you recognize if a treatment protocol or interaction is on the edge. Check the website of the professional association — such as the American Medical Association or the American Speech-Language-Hearing Association — to find out more.

Similarly, you should know credentials and competencies for the professional. For example, behavior analysts, who do so much to help our children, have quite specific guidelines for helping people with autism.

(Go here to find them: www.abainternational.org/Special_Interests/AutGuidelines.pdf)

Don’t ever be afraid to ask questions of the people in your child’s life. Their answers will tell you a lot. The National Institutes of Health wrote a primer to help you get started.

(Go here to see that: www.nimh.nih.gov/health/publications/autism/complete-index.shtml)

Just expanding on Guidepost One a little bit … let’s say you’re thinking about pursuing a new treatment for your child.

It’s a reasonable thing to do.

When I was age 6 to 10, my father was in dental school. He was approached by someone doing research on interceptive orthodontic treatment. It was very new back then. My dad was worried about the proposal, and wasn’t sure it was a good idea that I be an experiment subject.

These days, he said it was too bad because I was the perfect candidate. I had a little bit of crowding, and it was causing some teeth to grow in crooked. Had I had spacers put in, they probably would not have needed to pull my bicuspids to straighten my teeth when I was a teen. That practice isn’t considered so smart anymore, and I know why. I had to have orthodontia again as an adult and eventually had to give up playing the euphonium because my bite kept shifting. Eventually I had to choose between chewing my food and playing.

I chose food.

Perhaps if they’d had an Institutional Review Board back then, my dad would have felt more comfortable allowing me to be a part of that experimental treatment.

IRB review and oversight is a terrific way to know whether a new treatment is being properly conducted and properly supervised. These groups, often situated at universities and medical schools, make sure the treatment experiment is scientific and ethical.

Mark and I agreed that if a university was ever studying something related to autism and we could participate, that was how we’d help Sam get access to new services and ideas. We were part of a terrific sibling study that I think went a long way to helping Sam and Michael be able to play together as boys and tolerate each other as teens.

We also had Sam in a case study, which eventually became a published paper.

One time, we thought we were participating in something bold and new and scientific, but as we got deeper into it — auditory training it was called back then — we realized it was bogus and we bailed.

Look for the IRB label.

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.