Reading that DM article and the comments has made me feel a bit sick.
I know what you mean, but one of the comments from the blog helped me realise that all is not lost.
If only Daily Mail 'Journalists' like Sue Reid would aspire to being a tenth as good at thoughtful communication.
Comment reprinted in full below because I think it deserves wider readership...
June 23, 2012 at 10:00 pm
I am not living a “living death,” Ms. Reid. And if any of my friends at or below my functioning level with more limited communication are in a living death, I would wager heavily that it is more the result of ignorant people such as yourself than of autism itself.
People who assume that because we are different we are incapable do us no favors, whether those people are are our parents, community members, or ignorant “journalists”.
If we do not connect like you or in a manner you recognize, that does not mean we can not connect. If we do not communicate as you do, that does not mean we are incapable of communication. If we do not think like you, that does not make us wrong, but different.
I have a friend, who is only slightly lower functioning than I, but is non-verbal. When he and I are alone, he’ll use whatever pictures are available and some gesturing to communicate with me. He’ll cook, help with household chores, joke around, and is generally communicative, fun, and capable of everything I am short of communicating with written or spoken words. When his family is around, he sits in a corner and rocks. Why? 20 years of ignoring his gesturing and use of pictures and treating him as though he’s stupid or can’t understand them have beaten him down. He’s given up on trying to establish contact with them, because they are so convinced it is a tragedy that they refuse to realize what he is capable of. The only tragedy of autism that I know of is the one where parents are so caught up in the child they’ve supposedly lost to appreciate the one they have, so fixated on the supposed cause or cures that they neglect anything that might help their child live the best life they can with the neurology they have.
I was incredibly lucky, despite being low functioning, I am capable of fairly good written communication and some basic verbal communication. I have been able to advocate for myself. Many of my friends are not as fortunate, their primary form of communication is ignored as invalid, and many have parents who think that their supposed tragic loss of a child that perhaps never even existed surpasses the needs of the child they have.
I am not a tragedy, and neither are my friends. We are not “trapped” in “living death” but are fully capable of living happy lives when treated with the dignity of human beings instead of as some sort of unfortunate reminders of the children you wished for.