By 10:00 on Wednesday, several friends had already e-mailed me the links to this story on a new study directed by the Motion Analysis Laboratory at Kennedy Krieger Institute in Baltimore, MD. The study reveals what parents and teachers have long known: that many children with autism not only deal with social skills and communication challenges, but that they struggle to overcome writing difficulties so crippling in some cases, that writing is physically and emotionally painful.
This is, of course, not news at our house. It's always validating and comforting on some level to have public, research-based acknowledgment of what you have always suspected, because knowledge gives you power: the power to intervene and fix, if possible; the power to understand; the power to argue for school-based therapies and modifications that make help your child turn "failures" to successes.
And while L.'s school is generally good with the services it does offer, he was denied any OT help.
"He can hold a pencil," the OT told us at the evaluation. "He can write if he HAS to."
Well, he can, of course. Thankfully his fingers work just fine, and his hands do, too. He can take apart a DVD drive with a screwdriver, and spend hours with a ruler and protractor designing buildings, space ships, and other vehicles. But a simple writing assignment that might take a neurotypical child 10 or 15 minutes to complete will take L. up to two hours--and that's if the stars are aligned just right and L. is willing to devote two hours to it. Frankly, on most nights, the harmony of our home life, our desire to reconnect with each other after a busy day, T.'s needs, L.'s need to decompress after the school day, all trump spending hours shut in a room wrestling with L. to complete a written assignment. His daily reading logs we do at the end of the night, with L. dictating 4 or 5 factual sentences to me, which I dutifully type up for him.
Most people don't see how painful writing is for L. They don't understand how a child with such a large vocabulary, and an avid reader, can still be writing at a first-grade level. He's lazy, they might say, or not working hard enough. But we know differently. I can't imagine how painful and frustrating it must be for a child whose vocabulary is immense, whose brain is filled with dozens of new and creative thoughts and ideas, who loves to read and find comfort in a book, to contend every day with being unable to transfer all of that onto the written page. I have always likened L.'s struggles with writing to taking some immense and multi-faceted object and trying to squeeze it all through the tiny opening of a funnel.
Thank goodness we live in the times that we do, with access to wonderful computer technologies that can help kids like L. express themselves more easily. I ache for L., and for his struggles with writing, but I'm grateful that I understand them. I hope that studies like the Motion Analysis one might help the rest of the world understand them, too.