Wednesday, July 28, 2010
A.) Not be covered by insurance, nor would therapy
B. ) Cost hundreds/thousands of dollars
C.) Take several appointments
D.) Be futile since ASD is not typically dx'd until 5 or 6, because so many ASD-like behaviors are "normal" for a toddler or preschooler
No kidding, I received this answer time and again. I must share that I don't live in the middle of an isolated island with 2 doctors and a mule. I live within a day's drive of Detroit/Ann Arbor, Michigan. University of Michigan, home to some of the brightest, most innovative doctors in the U.S.. Home of Dr. Catherine Lord,** developer of the ADOS, standardized test for ASD, utilized worldwide. I discovered this recently, or I'd have tried calling Dr. Lord's program at the U of Michigan.
I continued my frantic research, asking everyone I could for insight or answers, and still did not get any assessments until G was nearly 3 years old. He was diagnosed with Sensory Processing Disorder and Speech Delay at 3, and began Speech and Language Therapy, OT and a sensory diet at home. OT didn't help much, though we loved the center and his bright OT. Still I persisted to ask his pediatricians, therapists at the OT center, preschool, friends, everywhere. I continued to notice more and more divergent behaviors separating him from his peers. To their credit, G was not entirely ASD typical in his presentation. He's social, but not typically so, which was noticed once I finally got some experts to listen and to observe him for longer stretches. Through exhaustive efforts, and the help of his preschool director whose ear I caught, he was given a complete multidisciplinary ASD team eval at 4 years old. On the parent questionnaire portion booklet done by the school social worker (ADI-R, about: http://www.agre.org/program/aboutadi.cfm), I answered "autism evident" to nearly all, with varying degrees, with numerous examples to validate, except 1 that I can specifically recall (harming himself, thankfully not an issue). Do you think G fell through the cracks? Do you think someone missed something critical? I do. And I blame myself for not being more insistent. For not finding the right information, program, pediatrician, therapist, friend. I only found out about the Early On program http://1800earlyon.org/ * through an overheard conversation at a playgroup. The mother had won home visits for her daughter to work on speech. I tried for months to reach someone at the education center, and before G was even assessed, he had aged out of the home service. We'd missed the window.
According to the Center for Disease Control (CDC), of parents of children with ASDs, approximately 50 percent notice atypical behaviors by age 18 months and roughly 80 percent notice atypical behaviors by age 24 months. But currently, the average age a child is diagnosed with autism spectrum disorders is 5.7 years. This has to change! Read on for some promising new developments on early diagnosis.
*More resources listed at bottom of page.
From PBS Facebook page: Peter Tyson is the editor in chief of NOVA Online. His son Nick is autistic. On the Inside NOVA blog he writes about a new study published in the Proceedings of the National Academy of Sciences.My pediatrician This study reports on a new technology that analyzes vocalizations in very young children that offers hope of early screening... of kids like Nick for autism, as well as for other children who suffer from a language delay.
Another study to determine autism with low-tech methodology - pupil size:
More about Peter Tyson's son Nick, in a blog post by him: very touching, so human.
June 24, 2009
All About My Son
Date Submitted: June 24, 2009
Why is it that, when I’m not with Nick, my 12-year-old autistic son, something will make me think of him in a way that suddenly gets me all choked up? I’ll be reading a book, or watching TV, or listening to music, when a certain phrase, or something somebody said, or a particularly moving musical passage will set me off. It’s a sudden spasm, like somebody snuck up behind me and struck me hard in the back. Sharp intake of breath, heart in throat, moist, stinging eyes. Once or twice I’ve even started crying. It’s all very brief, usually over just moments later. I’m left wondering, What was that all about? Why did that just happen? Why do I get so choked up?