Wednesday, July 28, 2010

Wide-Eyed Parents, Close-Minded Professionals

I began asking questions about my son's development at 12 months.  Pediatricians, friends, relatives, everyone brushed my concerns about his quirks off to age, genetics, my parenting style or just a maddening wait-and-see.  A parent knows.  Friends, relatives I cannot fault.  Of course everyone wants to see the best in a child, especially a loved one.  But professionals are seriously lacking in education, awareness and proactive care.  If a parent is asking questions, it should be automatic for a pediatrician to perform tests, have the child assessed by a specialist, or refer the parent to a group or organization.  I called psychologists, children's mental health centers and clinics.  I'd call a few, get discouraged, and call more again when G's behaviors ramped up to a fever pitch and I'd become desperate again.  Each call was met with the answer that assessing G would
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:, 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 * 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.

(Click link) Detecting Autism Earlier: "My son Nick is autistic. My wife and I first began noticing something was off when Nick was 18 months old, but our pediatrician said not to worry, he's just developing slowly, let's see where he is in six months...."

About the vocal profiling study:

About the voice analysis device:

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?

Is it because of all we’ve been through? Nick was diagnosed at age two and a half. (Initially it was with Pervasive Developmental Disorder, but at age five he was rediagnosed with autism.) That was 10 years ago, when his sister was four and his brother was 14 and his parents were decades younger than we feel today. Ten years. Never was such a simple statement loaded with so much freight, and any parent who has been through a decade of living with autism will know what I mean. So much has happened: Coping with the initial diagnosis and with a beautiful boy who regularly threw tantrums out of the blue and who found the world too much to handle. With the support of our families, visiting myriad specialists, some in other states, and trying every therapy and coping strategy, every diet and vitamin regimen under the sun. Sometimes seeing real glimmers of hope in Nick’s progress, and other times watching him slip backwards. Worrying about our other children and how they were being affected. Eventually having our marriage end under the strain of it all. And then there’s Nick: Think how much that innocent little boy has had to deal with.

Is it because Nick doesn’t live at home? By the time he turned eight in 2004, Nick was waking three or four times a night, screaming, kicking, slamming doors. Days were hard enough, but now nights? We felt terrorized in our own home, and after six years our emotional resources had dwindled to frankly dangerous levels. More importantly, we realized that Nick was crying out for help as best he could, and that we could no longer help him to the degree he needed. Or even ensure the basic safety of a child who, in the rare times when he slipped out of our grip, would run straight across our busy road. The decision to seek a residential placement was one of the hardest of our lives; even after we decided we had no choice, it took a year to make the first phone call. Would he be loved there? Would he still love us? In the end, we found a wonderful school, the New England Center for Children, and with the help of a good lawyer and great therapists and evaluators, we were able to put together a solid case and win a residential placement at NECC. Nick has lived there full-time since October 2004. It was a godsend for everybody, first and foremost Nick, who now gets round-the-clock structure, safety, and care—from absolutely saintly people, I might add—and who has begun to blossom, drawing his favorite Sesame Street characters with ever greater artfulness, communicating his wants and needs more effectively, and singing up a storm in his perfect pitch.
Is my sensitivity because of the tragic nature of Nick’s story, as that of any child on the autistic spectrum? Nick developed normally until 18 months. He’d look us straight in the eye, he was very engaged, full of life—a perfect baby boy. But at 18 months, he began to withdraw into himself. The tantrums, the perseverating, the veering off into a universe of his own—all that began. What did he do to deserve this? What would he have been like without autism? It’s clear now he’ll never go to college or marry, have kids or a typical career. He’ll likely be institutionalized in some form his whole life. And the world will always be too intense for him. It must be like watching a large-screen TV from two inches away (which Nick does, by the way). How can you possibly tolerate, much less make sense of, what you’re seeing and hearing? One sure antidote is nature. I take Nick hiking, canoeing, camping, and he always grows calm and enjoys himself, in part because he gets the exercise he needs.

So what’s the answer? Why am I vulnerable to instantly, unexpectedly getting all choked up? I get those abrupt heart tugs certainly because of all we’ve been through, because I only see Nick on Sundays, and because autism is tragic. But the main reason I suddenly get all emotional is because I love that boy no end. Like his mother, sister, and brother, I adore him, and for exactly who he is. Nicksterama. Slim Boy. Dr. Cute. I have a thousand nicknames for him, which you do when someone doesn’t speak much. And when something reminds me of him and I say those names and picture him in my mind, sometimes I get that whack in the back, and I start blinking and swallowing. He’s trying so hard

— Peter Tyson

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