I take real exception to the language you used in the opening paragraph of your article about Peter Hotez and his family's experience raising a daughter with autism. I have a six year old son with autism and I would never, in my darkest moments, want to convey to anyone that: "Having a child like [Oliver] is. ... debilitating, dispiriting, demoralizing." Public misconceptions and fear of people with autism is perpetuated by the mass media that insists on characterizing life with autism as Shankar Vedantam did in this article. Furthermore, when a parent first learns his child has autism and searches the internet for information he will be bombarded by what is continually portrayed as a tragedy. In my mind, this is the real tragedy. My son is mostly non-verbal and he struggles with many things in life and probably always will. I can think of many, many words to describe him and our life together but the ones you chose are not among them. Dr. Hotez may be hoping for the day "when the girl comes out of" his daughter. But I am waiting for the day when people begin to see that people with autism can, and do, bring real blessings into the lives of those who love them.
Sincerely,
Me
Ugh ... I just typed a long comment and it disappeared into the depths of the cyber-void.
ReplyDeleteI think there should be a way to let parents express their sadness and frustration over raising a child with very complicated needs without labeling the experience -- or worse, the child -- in such a negative way.
I read this article yesterday and was really put off by its tone, one that seemed to come more from the author than the dad. Especially the closing paragraphs. I'm with you!
ReplyDeleteThis is beautiful. Thank you for writing this.
ReplyDeleteAmen.
ReplyDeleteThe media depiction of autism is what's "dispiriting and demoralizing".
This article is so sad. How wonderful that the daughter is verbal, and has hobbies (like Japanese animation). And that she understands the concept of friendship, and wants to have friends. It's discouraging that the family can't realize how much she does have going for her.
ReplyDeleteI hope her family can someday find a healthier or more hopeful way of viewing her and her disability.