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How the Autism Treatment Network Helped My Son

May 10, 2010 27 comments

This is a guest post by Judith Ursitti. Judith is Regional Director of State Advocacy Relations at Autism Speaks and has been involved in advocacy since her son Jack’s autism diagnosis almost five years ago.

By now Jack and I had grown accustomed to the routine.

You hear of an excellent doctor. You absolutely must get in to see them. You call to make an appointment. Wait for months and months and months. Finally get there. Sit in the lobby, clipboard on your lap, writing down medical history and group i.d.’s.

Jack screams for a few moments as you wait. People stare. We follow the nurse to the back. Answer questions. Show said doctor that you are a pro at shouldering the reality of it all.

Chin up. Head home.

Empty handed…

Not quite two years ago, Jack and I had another one of what I thought would be one of those appointments. One filled with all the can’ts and doesn’ts..

But this was our first visit to an Autism Treatment Network (ATN) site.

I picked Jack up early from school that day and we made the appointment on time. We sat in the lobby of the LADDERS Clinic with the clipboard. Jack screamed for a few minutes and then bounced up on down on the chair by the window.

And then the nurse led us back.

And we met Dr. Margaret Bauman.

And Dr. B was enamored.. “This guy is different!” she declared.

She drilled me with questions, which I answered rather typically I thought. But Jack’s behavior set the tone. He loved Dr. B. He flirted with Dr. B.

We spent well over hour with Dr. B. She didn’t just focus on his deficits.  True, he was nonverbal.  True, he wasn’t pointing yet.

“His social referencing… it’s beautiful!” she declared.

She prodded him patiently from head to toe.  Took notes.  Contemplated what might be going on with him.  Why he wasn’t talking to us.  Why his autism remained so severe.

And then she gave me a plan.  (I’ve learned since then, that’s what they do at an ATN site.  They don’t just think about the brain. They think about the whole body.)

Dr. B. ordered blood work for the routine genetic testing.  But Dr. B also wanted to make sure Jack wasn’t having G.I. issues, so she referred us to the ATN gastroenterologist.  Allergies can really be an issue for kids with ASD, so she referred us to their allergist.  We discussed sensory issues.  Since he was nonverbal, we talked about different types of augmentative communication devices.  She talked to me about Jack’s occasional sleep issues and we devised a plan to address them.

I must confess that at that very moment, as we worked on Jack’s treatment plan, I allowed it to creep in. That provocative, luxurious sensation called

Hope.

I’ve always felt so connected to Jack. Engaged. Sometimes it’s hard to for others to see, but there is a sparkle there.

Normally when Jack is being evaluated or examined, we only hear words like “challenged” or “severe.”

But Dr. B didn’t use those words. To the contrary, she recognized the sparkle right away.

As I pushed the glass door open and we walked out into the parking lot, a fistful of lab-slips in-hand, I felt a new spring in my step.

Careful, I thought to myself … Remember, the Dr. B really doesn’t have any answers.

I elected to savor the moment.

Jack smiled and jumped into a puddle, giggling as we headed to the car.

Two years later, I’m happy to report that Jack remains a patient at LADDERS.  He started talking to us about six months ago.  His favorite phrase at the moment: “No way…”

The ATN (an initiative of Autism Speaks) is the nation’s first network of hospitals and physicians dedicated to developing a model of comprehensive medical care for children and adolescents with autism. The ATN offers families care from doctors highly experienced in helping individuals with autism and providing treatment for associated conditions such as gastrointestinal and sleep disorders. ATN doctors are dedicated to finding better ways to manage the health of children with autism and sharing their increasing knowledge across the wider medical community. In particular, the ATN is dedicated to developing better ways to identify, manage and treat the physical health conditions of children with autism. And as treatments for these conditions become better defined and recognized, it is the aim of the ATN to see insurers routinely recognize the autism diagnosis and cover physical health treatment.

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