Q: If a child with FAS has a responsible 100 IQ, could they not be more independent?

A: Well, I have never met a young adult with FAS and IQ of 100 who was responsible enough to live independently. I think that's an oxymoron, I really do. I know of several adults with FAE who live on their own, but their efforts to be independent almost always result in serious trouble of some sort.

You can teach them HOW to be responsible, and you can give them all the guidance to lead them along the path of responsibility, but those executive functions of the frontal lobes are not going to work any better for all your efforts. They are still going to make really stupid mistakes and very poor decisions, and they are still going to forget the rules. Even if they can learn to control their impulses to some degree, the ability will not be there all the time.

I figure it's this way: When John or some other young adult with FAS or FAE has everything going for them - all the protective factors in place, like good home, meds that work, healthy role models, etc. - they will achieve a certain degree of success with being able to control their impulses and make good decisions. The maximum I have seen in any kid is about 90% of the time they can make the right decision and resist the impulse, and the other 10% of the time they screw up, maybe to the point of getting into serious trouble or jeopardizing their safety or someone else's. And that is with constant supervision. And you never know when that 10% is going to happen. Take away the supervision, and the percentages change, maybe even reverse. They can have their medications prescribed, they can have been taught what's right and wrong, they can be informed about all the consequences, they can be in agreement about how they should conduct their behavior, they can express a willingness to do all the right things, but send them off on their own, and it's just a matter of time before they find themselves in serious trouble.

It is my opinion that the poor judgment is even more of a problem than lack of impulse control. I have seen John break the same rule over and over, where he gets the same meaningful consequence. It almost seems like he hasn't learned from the consequence, but I'm pretty sure he is aware of the consequence at the time, and I'm pretty sure that he sometimes thinks it over - I've observed this, can almost SEE the wheels turning inside his head - and I've seen him go ahead and do it anyway. One time I was just so exasperated. I said to him, "John, you know that was wrong, you know you always get caught, and you know you will get a consequence. So WHY did you do it?" As soon as I asked him why, I realized how silly that question was, but you know what? He gave me an answer, and it all made sense. He said, "Because I thought that maybe this time I wouldn't get caught." See? He is stuck in that 6-year-old mentality, that 6-year-old stage of conscience development. On top of that, he is not capable of weighing the risks of his actions. He ALWAYS gets caught, but he thought that maybe this time he would get away with it. He cannot weigh the risk of the choices between taking one path or another. That's the poor judgment. That's what I think causes most of the problems for our adults with FAS/FAE. And no matter how smart they are, they still make foolish decisions.

The same thing happens when someone drinks too much. The brain under the influence of alcohol functions a lot like the brain that was exposed to alcohol prenatally. You know how the left brain is the thinking, processing, orderly, consequential part of the brain? And the right brain is the feeling, intuitive, creative, impulsive side of the brain? When a person has had one too many, their left brain shuts down and they are pretty much operating in right brain mode. That's why someone at an office party can insult their boss, embarrass their co-worker, tell secrets, etc. and then get in the car and drive home. They can take those keys and start up that car, knowing they have had too much to drink, being fully aware of the possibility of getting pulled over, or of having an accident, and they will do it anyway! Smart people do this all the time. Because the alcohol screws up their judgment and warps their perceptions of themselves and the world. The combination or poor judgment and lowered inhibitions means they won't have much control over their impulses and they won't be making sound decisions, and eventually, if this is a regular occurrence, somebody is going to get hurt.

The person with FAS/FAE is operating with a brain that is like it's perpetually drunk. Meds help, they help a great deal, they can minimize the effects, but only to a certain degree. Maybe someday scientists will find a pill that will maximize the function of the frontal lobes. I think it's pretty amazing what Adderall can do for John, but it doesn't fix him completely. It only increases his chances of making good decisions from 10% to 90% and that is only if he has constant supervision. He needs his "policeman" in the rear view window.

Have you ever driven a stretch of highway that you know never is patrolled and go just a little faster than the speed limit, if it is a safe area (no traffic, no houses, no schools, no kids)? Have you ever been speeding and then you see a police car in the rear view mirror? What do you do? Foot off the gas really fast, maybe even brake a little. Our kids are like that, driving down the road of independent life, but they don't know when it's okay to speed, they just speed. And their brakes don't work very well.

I've seen young adults with FAS/FAE who have a sense of responsibility, but they don't have the consistent good judgment to carry it out. And that's a matter of brain function rather than character. John has integrity and the willingness to do the right thing, but I cannot trust him - rather I cannot trust his brain - to make the right decision when he is off on his own. I cannot even let him take his dog for a 5 minute walk around the block without risking behavior that could get him into serious trouble. I would never be able to let him go to the Mall. It would be unrealistic of me to expect him to control his behavior. Just like it would be unreasonable of me to expect the old man next door who has Alzheimer's to not get lost when he goes for a walk.

We can only hold them accountable to the extent that they are capable, and the brain damage renders them neurologically incapable of maintaining control consistently 100% of the time. The old man next door might be responsible and intelligent. He might even be able to find his way home 3 out of 4 times. But that does not mean it is safe for him to take a walk on his own. IQ and responsibility are not the crucial factors here. Brain function that affects memory and judgment are what matters, and this may or may not be working at any given time.

The responsibility lies with those capable of making good decisions. That's the parents and policy makers. I would love to see John be able to live independently. But I know that if he did, he would eventually get hit by a car, arrested for sexual harassment or disorderly behavior, or any number of serious consequences. I choose to help him attain independence though making his own life choices about when he lives and who he lives with, where he works, what he does in his leisure time, etc., within the confines of a safe environment that is based on restrictions, structure, and supervision. He doesn't have the same level of independence as his "normal" brother, but I couldn't say that one is better off than the other. John is happy and safe and has a great deal of control over how he lives his life. As a parent, I couldn't ask for more.