Supposedly there is an experimental cure for autism?!?

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to suggest there is a cure for autism which we know is developmental is just stupid. unless you give someone a new brain then it is not going to happen. sure you might be able to teach them to think in different ways or use drugs but unless you alter the course of development before the difference is set then there is no way to really get rid of it.

I'm certainly not going to go sign my little son up for this. Even if it's NOT placebo-effect hokum, until there are decades of research and it's proven safe, it seems ridiculous to fill a child with untested pharmaceuticals that are being touted as a "cure" for a genetic variation. I think it's completely unethical to subject very small kids, who are incapable of giving informed consent, to experimental gene therapy for something that's not life-threatening. JMO! If my son wants to take medication when he's older, that's his own decision. I would hope he'd research it thoroughly and not try anything that's still in the experimental stage. It's not friggin' cancer.

As for the quality of life issue, I think when people worry about quality at life (at least for my child) it is not the current situation they worry about, but what happens after they're gone. If my son is unable to care for himself as he gets older, I'm happy to continue looking after him, but if he were unable to do basic tasks such as bathroom, self-care, etc., I do worry about what will happen if he goes to a group home or adult foster care after I die. Those people don't know him and they're caring for him for profit. What do they care of his feelings or his needs? Abuse and neglect are rampant in "the system." I have to admit a "cure" would be tempting, if it meant the difference between him being able to care for himself and being left for half a day in soiled Depends by lazy, uncaring foster caregivers. As my son seems to have some form of HFA, I hope that will never be an issue, but having friends who are public health nurses, I hear the stories and feel for the parents of the severely handicapped kids who wind up being "cared for" by profiteers.

Is this what the Mcarthy kid really has?

As I've pointed out before, back in the Middle Ages, when a child began exhibiting what we now recognize as the symptoms of autism, many peasants believed that their real child had been kidnapped by the elves and replaced with an elfin child - a "changeling".

In our modern world, of course, nobody believes in elves any more - now the peasants think that vaccines took their real child away. At least in this version, the recommended treatment isn't to leave the strange child in a clearing in the forest and hope the vaccines bring the real baby back...

Which is interesting because I wish (as an adult, not a helpless baby, of course) that someone WOULD just leave me in a clearing in the forest. I would like that very much.

My personal opinion is that Evan is Asperger's or mild Kanner's type with regression caused by epilepsy; at least that's what her book seems to point to. Evan's "severe autism" never existed--he was just a normal autistic kid under a lot of stress because of repeated seizures. Seizures cause regressions even in typical kids with epilepsy, and Evan's "autism" went back to HFA, verbal, and cognitively average--what McCarthy claims is "cured"--when the seizures got under control. (I don't recommend actually reading her book. It made me really mad and I nearly threw up. Plus, the quality of the writing is abysmal. But if you must, that is probably the conclusion that's easiest to draw.)

There's another theory which seems relevant, and could be possible; Landau-Kleffner Syndrome. It's relatively rare, but it has that same characteristic pattern of speech loss and epilepsy that you see in Evan; and when you treat the seizures, the speech comes back. I'm not sure about this, quite, because Evan seemed to have autistic traits even before the seizures, which would point to him having been autistic--but not severely autistic--all along.

What's definite is that McCarthy didn't "cure" her son of autism. In either scenario, he's doing well because his epilepsy is under control. The emotional effects of the way she seems to view him, on the other hand, may not be so benign.

CDD is a kind of autism, but, like Rett's, may have a different genetic cause from regular autism. It's also called Heller's syndrome. Unlike Rett's, we don't know its cause; but the traits people with CDD wind up with are pretty much identical to Kanner's autism, though generally with more severe impairment.

Not in America. Somebody would have to pay for it first.

I have an appointment to do some experimental magnetic therapy that is supposed to temporarily reduce the effects of AS. John Robison told me he tried it, and so I'm driving 160 miles to spend two day sin a hospital to see how it is. I'll tell you all about it when I'm done.