Aspergers (an autism spectrum disorder), the psychologist informed us, is unique in each case because it always comes with one or more mental health conditions that are distinct for each individual. "We know how to deal with Aspergers," he said, "It's the associated conditions that make each case challenging."
In our son's case, those fellow travelers include major depression, general anxiety, maybe bipolar, and perhaps some obsessive compulsive tendencies. And, yeah, they're problematic. A daily cocktail of professionally monitored medications helps. We think.
Frankly, our son sometimes tires of the daily medication regimen. I see why people with mental illnesses go off their medications. (Well, that, and the meds tend to be quite expensive.) Every medication carries a host of side effects and each one has to be balanced against all the others. Some of our son's meds are prescribed to counteract some of the effects of other meds he takes that are seen as essential. That's why his medications are closely monitored by a pediatric psychiatrist.
One view is that mental health meds are like insulin for a diabetic. Maybe it works that way for some people. But it's really not that straightforward. One expert explained to us that they really don't understand the mechanisms in many drugs used for treating mental health conditions. They know that some drugs are effective for some people for some conditions, but they don't understand how they work. They don't know why those same drugs don't work for other people with the same condition. Nor do they know why some drugs sometimes stop working for people.
Once this expert explained drug therapy for mental illness quite thoroughly, it sounded very much like the practice of medicine during the dark ages. The fellow admitted that it can seem that way. His expertise came only with many years of experience with many patients. Often, he said, which drug to prescribe comes down to gut instinct.
We have seriously considered a medication free trial period for our son. But you can't stop some of these meds cold turkey without disastrous potential. The patient has to be weaned off some of these drugs and slowly ramped up on replacements.
When I mentioned to an acquaintance the possibility of our son going drug free for a time, he said, "Why not? It can't kill him. It's not like a diabetic quitting insulin." Actually, it can be. Besides, only someone that has little understanding of self harm and suicidal tendencies would suggest that going off mental health meds couldn't be fatal.
One of the drivers of our son's medication regimen fatigue is that every time he takes meds he is poignantly reminded that he is abnormal; that he is defective. Society has become somewhat more accepting of mental illness in recent years, but our culture still deals very badly with mental health disorders. They're scary because they're poorly understood. Mental illness is often seen as a moral failing.
Our son doesn't like to tell people he doesn't know well about his Aspergers, depression, anxiety, etc., because it freaks people out. They don't know what to do or say. They have an underlying fear of him. Once he has gotten to know and has hung out with male peers, they don't have much problem when he reveals his conditions to them. He seems normal enough.
Girls, on the other hand, tend to react very poorly. "They look at me like I'm not human," he tells me. It's common for people with Aspergers to have difficulty reading and demonstrating normal facial expressions and body language. But he says that he knows the look girls regularly give him when they find out about his conditions. It's a mixture of seeing him as pathetic, being scared of him, and crossing his name off the list of potential dating partners with big red Xs. "I pity you but I'm horrified of you," they seem to say.
It's hard for anyone to be a teenager. One therapist, noting that teens have to deal with physical and social developments while having brains that aren't fully developed, says that any adult with this set of circumstances would be classified as mentally ill. It's hard to be a normal teen. Add clinical mental illnesses to the mix and it's extremely challenging.
It's hard for the parents too. One evening last week it became apparent that our son was experiencing a depressive episode. I sat down with him and worked through a worksheet provided by his therapist. That helped some. Then I went to bed.
A little later my wife went looking for our son and couldn't find him. The more she looked, the more panicked she became. He has had suicidal thoughts and he's old enough now to know how to bring those thoughts to effective action. After imagining the worst, my wife finally found our son just lying on the floor to the side of the dining table. She had to enact some help techniques she has learned to eventually get him to bed and to sleep.
After a few episodes like that, a parent starts to feel fatigued with the situation. You do the kinds of things you're supposed to do to relieve stress. But you know that you can't ever get away from it. Not even when your child becomes an adult. It will always be there. Maybe dealing with it eventually becomes routine, as has dealing with my Multiple Sclerosis condition. Maybe not.
Our son's therapist says that he is impressed with our level of knowledge and the interventions we are undertaking. Most people he deals with are far more clueless. But we still feel like we don't know what we're doing most of the time. We're fumbling our way through the situation. Sometimes—well, maybe lots of times—we see in hindsight that we have messed up.
But we keep forging ahead. What else can we do? We want the best for our son that has Aspergers, just as we want the best for each of his siblings. We love him, even when it's challenging to do so. And maybe that's the key. Just keep on doing our best to love our son and deal with whatever comes.