In a word, don't ever think you can put your loved one with autism on automatic pilot. And sometimes you have to battle the "establishment" to do right by your loved one.
I have a friend who is a caretaker to her ailing husband. Over the past 6 years he has battled against everything from stokes to cancer (more than once for cancer). He now needs 24 hour care and is in a nursing home. After a number of strokes, major or minor, he has some lucid days-but more and more, the days are not lucid. And, due to the strokes, he can not think clearly.
So, of course, let him make decisions impacting his health. And let's not consult with loved ones first, such as his wife who is at his bedside nearly every day (in addition to working full time, I might add.)
So what does this have to do with Bil? Please bear with me. The following is printed with her permission: (the names of the guilty having been changed), one of the latest of her trials in caretaking and advocacy:
"The speech therapist, just called and said that (her husband) was very clear this morning about not wanting to drink any more of the thickened liquids. (We've been going around and around on this since he got out of the hospital where he battled back from a variety of ailments.) [The speech therapist] explained to him that he's at risk for pneumonia if he aspirates something into his lungs. He answered very calmly and politely that he'd rather take that chance than drink anymore of that s**t, or go thirsty like he's been doing. And he said it in front of the nurse. So she's going to call [his doctor] and ask him to change the order.
Even though I've been using that very argument, they still leave it up to the resident--who half the time isn't even conscious of what is going on!"
My friend's experiences are valuable learning opportunities. I listen and absorb.
The bottom line is....YOU are the person who has to look out for your loved one.
NEVER "leave it to the professionals".
And, despite person-centered planning (which I know I don't fully understand) you CAN NOT let a person with autism necessarily make his own health care decisions. Yes, I know I will be ticking off a lot of advocates, but I think the pendulum has swung too much in the other direction.
Tomorrow I will write more about this subject. I may have touched on this before, but I want to do so again.