Autism is a pervasive development disorder (PDD), a group of illnesses that involve delays in the development of many basic skills, most notably the abilities to socialize or form relationships with others, to effectively communicate, and to use the imagination (including fantasy play). Children with autism and related disorders often are confused in their thinking and generally have problems understanding the world around them.
In addition to problems with social interaction, imagination, and communication, children with autism also have a limited range of interests. Many children with autism (nearly 75%) also have mental retardation. In many cases, children with autism are unable to emotionally bond with their parents or other family members.
Yes, that’s what it actually says on WebMD. For real. There are so many things wrong with that don’t even know where to start. But how about here …
Tasha the Backyardigan and her family, as imagined by Brooke.
Please feel free to write to the good folks at WebMD. Seems that someone needs to tell them a few things. Like that autism is a not an illness, that it’s pretty damned offensive to say that people with autism are “confused in their thinking”, that 75% of people whose IQs are tested using methodologies akin to testing an English speaker in Swahili will likely ‘fail’ such tests, and that saying this …
“In many cases, children with autism are unable to emotionally bond with their parents or other family members.”
… is as misleading as it is reckless.
Parents of newly diagnosed kids may be reading this before they see anything or talk to anyone else.
Four years ago, I had the opportunity to speak to a neuropsych class at MIT. This is part of what I wrote following my talk.
I told them about the disastrous experience with that first neuropsych. The one who somehow found the magical power to prognosticate in the bevy of degrees on her wall. The one who told us after a two-hour meeting with her that our then three year-old would live a solitary life. The one who saw my beautiful baby as a set of limitations. The one who could have leveled a parent with less conviction.
Perhaps, I told them, a different parent would have looked at the white lab coat and the pretty Harvard degrees and said, “Oh well. I thought I knew my little girl, but I guess I was wrong. I suppose there’s no point in trying to change who she is. I mean, Harvard. She must know what she’s talking about. No point in trying to make my baby what she’s not.”
I told them the fabulous story I read not long ago. Forgive me, I can’t remember where I saw it, so if it was on your blog, please tell me. In the meantime, I’ll take some license with it if you don’t mind. It was a story about a child with freakishly long fingers. His parents were terribly upset by his deformity and they brought him to a renowned specialist seeking his help. The specialist gasped when he saw the child. “My God,” he said. “This is amazing. He has RJ Syndrome.”
The parents were in a panic. “RJ Syndrome? Doctor what does this mean? What can we do to help him?”
The doctor smiled and told them that the boy was likely to be a musical prodigy. He told them how incredibly lucky they were to have been blessed by the rare and wonderful RJ Syndrome. They ran home and bought him a violin. They found the best piano teacher in town. Their home was filled with music. They would help to foster the talent that they now knew he must have.
Years later, the parents sat in a full music hall watching their son, the virtuoso perform. They recognized the man next to them as the doctor they had seen so many years before. They re-introduced themselves and reminded him that their son had been diagnosed with RJ Syndrome. He looked at them blankly. The mother prodded, “You remember, his long fingers?”
The doctor laughed. “Oh, that? I made that up. I just didn’t want you all to feel badly about his fingers. I guess it all worked out.”
It’s all about perception, I reminded them. You can tell me that my child has challenges but may well also have the ability to do something amazing or you can file her away under what you see as her limitations. How you choose to see the world matters. Especially when you’re the one in the lab coat.
Click HERE to send WebMD an e-mail.
Because they’re the ones wearing the lab coats.
How they choose to see our children matters.
This is how I choose to view mine.
If you’re on Twitter, tweet the following and I will retweet:
“Nearly 75% of kids w #autism have mental retardation” @WebMD This is INACCURATE + DANGEROUS. Here’s why: http://wp.me/pNO8N-3fy @diaryofamom
Edited to add:
PLEASE understand that I, in no way, shape nor form, mean to imply that there is anything to be feared in having a child who is indeed mentally challenged, nor that people with intellectual disabilities have any less potential than those without.
Intellectual differences are just that – differences. They do not change one’s dignity, one’s humanity, one’s ability to love and be loved.
All that I had hoped to convey is that we can never make *assumptions* regarding our children’s intellectual profiles, their capacities to learn, to love, to connect, to play, or to imagine in the absence of accessible testing. There is so much about our children that we don’t know – that we don’t yet have the means to know. But it is equally important to ensure that just as we don’t want anyone making assumptions about people with autism, we never make them — or allow anyone else to make them — about intellectual disabilities.
I sincerely apologize, from the bottom of my heart, for any inadvertent implications to the contrary in my post and I implore those of you commenting to bear this note in mind when you do. Thank you.