Guest blog by Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). The Regional Autism Center at CHOP is a member of Autism Speaks Autism Treatment Network.
At the conclusion of a routine pediatrician’s visit eight years ago, my son’s doctor told me that my toddler had a severe, lifelong neurological disorder by shoving a batch of articles into my shaking hands. The word “autism” appeared in the title of every article. He wished me an offhanded “good luck” and left.
I wasn’t surprised to learn that our son’s development wasn’t typical. For nearly a year, I’d fretted over some of his unusual behaviors. Still, I would have preferred to hear his doctor’s concerns rather than read them while attempting to keep my 17-month-old from falling off the examination table. I felt terrified, hollowed out and numb all at the same time.
At least the doctor had scrawled the numbers of several excellent developmental pediatricians on one of the articles. Still, the information was delivered so coldly and ended up sending us through such a gauntlet of referrals, that the entire experience was exhausting and far from optimal.
I fantasized about what it would have been like to have a “one-stop shopping experience,” with my son’s pediatrician being knowledgeable enough to make the diagnosis that we had to wait another four months to receive. I thought about how wonderful it would have been if my son could have spent those four months receiving behavioral intervention and related medical services for the “co-morbid conditions” that plagued him. As with many children on the autism spectrum, these conditions included gastrointestinal distress and sleep difficulties.
My heart broke for the many parents whose children would be diagnosed in such a brusque and uncaring manner. No doubt, many have experiences that would make mine look exemplary by comparison.
Our oldest son is almost ten years old now. We’ve relocated to New Jersey for the educational system and proximity to family. We’ve had a second child, also diagnosed as being on the autism spectrum. During this time, I never stopped dreaming about that “one-stop shopping experience.”
So I was thrilled, just over a year ago, when I heard about the Autism Speaks Autism Treatment Network (ATN) center at Children’s Hospital of Philadelphia. I jumped at the opportunity to enroll both our children.
This gave us access to the services of nutritionists, developmental pediatricians, neurologists and psychologists – all within the same system and all knowledgeable about autism. Here, we likewise found specialists in gastroenterological, metabolic and sleep disorders.
Then, this past December, I and several other parents had the honor of helping launch the autism arm of CHOP’s Family Partners Program. This program is a credentialed and nationally recognized project to provide real-time family feedback for committees, projects, initiatives and other quality-improvement work.
Our Autism Family Partners are dedicated to providing important feedback to the ATN and other areas of the hospital and care network that work with children on the autism spectrum.
We spent a rewarding evening at a forum led by Amy Kelly and Amy Kratchman, two of the ATN’s family advisors. They are spearheading the program alongside developmental pediatricians Amanda Bennett and Susan Levy. Rounding out the forum were several other parents, and staff members from the hospital and the ATN.
Our team has many goals ahead. The most important, perhaps, is to provide the center with feedback on programs, initiatives and research that involve families with children on the autism spectrum.
At the launch meeting, we were asked whether, as parents, we wanted our children’s pediatricians to be educated about autism’s associated medical conditions. Would we like them to be able to treat these conditions? Would we like to see better collaboration between pediatricians and the physicians who will treat our children when they become adolescents and adults? Finally, would we like to see all this care coordinated in one place?
I looked around the room to see parents nodding their heads in emphatic agreement. We all answered these questions with a resounding “yes.” Frankly, it sounded like paradise to me.
I know that some parents will read this article and feel skeptical that such collaboration and coordination of expert care is even possible. But our ATN center in Philadelphia has already begun to develop a plan to pilot this type of comprehensive collaboration. The plan is to expand the collaboration to other pediatric practices in the region until at least one provider in every clinic is well educated about autism and its related medical conditions. Eventually Autism Speaks ATN hopes to expand such programs across the entire nation.
Perhaps you’re skeptical that any busy pediatrician would have the time or interest to become educated about autism. But each year, pediatricians must complete continuing medical education courses to maintain their board certification. The goal is to tap into this requirement to increase their knowledge about autism and its related medical conditions.
I’m aware that educating one physician in every major practice in North America will take time. (Understatement of the year?) Then again, it wasn’t so long ago that “early intervention” was just a pipe dream. The same goes for the self-contained classrooms that now benefit so many of our children.
I’m certain this process will involve small and laborious steps. I’m also certain the ATN will succeed. That moment can’t come too soon!
Somewhere soon, a baby will be born. In a few years his or her parents will approach a pediatrician with their concerns. They may be dismissed. They may be put on a wait list for a specialist. Or, they just might receive a diagnosis and the tools to help their child succeed – all in a compassionate, caring and informed manner.
It all starts with a little hope and a lot of hard work.
Editor’s note: For more information on Autism Speaks Autism Treatment Network – including the location of your nearest center – click here. You can also visit Kim McCafferty’s personal blog at Autism Mommy-Therapist.