At the conclusion of a routine sick visit eight years ago, my son’s pediatrician told me my boy had a severe and lifelong neurological disorder by perfunctorily shoving a batch of miscopied articles into my shaking hands, all of which contained the word “autism” in the titles. He then quickly and summarily left the room.
He wished me an offhanded “good luck” before he departed, leaving me to gather the pieces of my shattered soul along with the detritus that comes with any toddler. This pseudo-diagnosis was delivered to me so thoughtlessly not by any quack, but by a renowned physician in our area, one whose practice was fifteen minutes from the nation’s capital.
He was the pediatrician with a waiting list to get in; the one whom everybody loved.
Through my grief and shock, and if I’m honest, my hope now that I knew what Justin’s differences meant, I felt an intense rage at having been informed this way. I vowed someday I’d try to do something about it. Now, it seems, I’ll get to have that chance.
The knowledge that my eldest son’s development wasn’t exactly typical didn’t come as the greatest shock to me back in 2004, as I’d been concerned about some of his behaviors for the previous eleven months. Still, I would have preferred to hear his doctor’s concerns rather than read them with one hand tenuously clutching those damning articles and the other attempting to keep my seventeen-month-old from falling off the examination table.
I felt terrified, hollowed out, and numb all at the same time.
The detail that kept me sane was he had written the numbers of several excellent developmental pediatricians on the front page of one of the articles, so at least I wasn’t starting from scratch. Even as I gathered up my boy and his toys I had a partial plan on how to get the official diagnosis, which I knew would lead to the appropriate therapies I had no idea in that moment I’d be mostly conducting solo for the next fifteen months.
The contacts wouldn’t change everything, but they were helpful in that terrible moment. Still, the information was delivered so cruelly, and would lead to so many different referrals both for therapeutic practices and for diagnoses, that the entire experience was exhausting, and completely less than optimal.
When we had finally settled Justin into a routine about a month later I found in my few unfettered moments I would fantasize about a one-stop-shopping experience, one in which my pediatrician would have been able to deliver the diagnosis I had to wait another four months to acquire a state away.
I also dreamt of spending my time actually delivering services to my child rather than gracing the waiting rooms of the myriad specialists we were directed to see, all of whom would hopefully ameliorate the co-morbid symptoms that so plagued my son, namely gastrointestinal issues and sleep disorders.
I wished desperately that we’d had a better experience. My heart still broke for the numerous parents whose children would continue to be diagnosed, some in that exact brusque and uncaring manner, many who would have their child’s condition revealed to them in a way that might make my experience look exemplary.
My eldest is almost ten years old now, and it’s been almost a decade since that devastating day, one which continues to haunt me. In the interim I’ve relocated my family to New Jersey for the educational systems and proximity to family, and we’ve had a second child, also diagnosed on the autism spectrum.
I never lost hope for the one-stop-shopping experience, so when I heard about the Autism Treatment Network (ATN) at Children’s Hospital of Philadelphia (CHOP) over a year ago, I jumped at the opportunity.
As participants in the program both of my children could be enrolled and have access (if needed) to the services of a nutritionist, a developmental pediatrician, a neurologist and a psychologist all within the same hospital system. Specialists in gastroenterological disorders, metabolic disorders, and sleep disorders are available as well.
We would be asked to make the commitment to schlep to Philadelphia four times in the next three years with each child, but we could pull them from the program at any time. The ATN is primarily funded by Autism Speaks, and has seventeen centers throughout the United States and Canada. Its mission is to provide families of children with autism with state-of-the-art, multi-disciplinary care.
Last week along with several other parents I had the honor of being invited to participate on the first autism-centered Family Partners Program, an initiative dedicated to improving the delivery of services of the ATN to families with children on the spectrum. I was fortunate to spend the evening with Amy Kelly and Amy Kratchman (family advisors for the ATN) who are spearheading the program with the hospital, as well as with two intensely dedicated developmental pediatricians (Amanda Bennett and Susan Levy).
The forum was rounded out by several other parents of children with autism spectrum disorders as well as staff from the hospital and the ATN. While there are many goals the team wishes to accomplish, the main focus of the group is to provide feedback to CHOP and the ATN about programs, initiatives, research, quality and improvement projects that involve families with children on the autism spectrum.
Once the preliminaries (and the food, a definite bonus) were dispensed with, we got down to brass tacks. I’m not certain who first proffered up the idea, but fairly soon into the meeting someone asked the parents these questions:
Would you prefer to have your pediatrician be educated and knowledgeable about your child’s co-morbid conditions? Would you like them to be able to treat these conditions? Finally, would you like to see the ATN in better collaboration with pediatric and adult physicians (since children with autism eventually become adults with autism) so that your child could be predominantly treated in-house?
As I reluctantly put down my Caesar salad wrap and looked around the room at moms nodding their heads in emphatic agreement, we all answered with a resounding “yes”.
Frankly, it sounds like paradise to me.
I know that some parents will read this article and be extremely skeptical that any type of collaboration will take place, much less lead to significantly improved delivery of services. The truth is, however, that we have to start somewhere. CHOP has already begun to consider a practice in which to pilot this collaboration, and the ultimate goal is to expand the collaboration to other pediatric practices in the region, with at least one provider in every practice being well-informed and educated about autism.
If you’re wondering why any double-booking appointment physician would be interested in this type of instruction, the ATN at CHOP has worked that piece out too. All pediatricians are required to carry a certain amount of MOC (Maintenance of Certification) credits to maintain their board certification, and this partnership would satisfy some of those requirements.
Given that I’m a “behaviorist” on the side, I was happy to hear that these doctors would not just be intrinsically rewarded. Time is in short supply for all of us. Physicians would not just walk away with an increased knowledge base about their patients- they’d have credits toward retaining their licensure as well.
Throw in a little chocolate, and it would be the perfect experience.
Of course, all of this is a huge undertaking, and its success ultimately resides in multiple practitioners desiring to deliver better services to beleaguered families, which is no small undertaking. I’m aware that educating one physician in every practice in the United States will take some time (perhaps the understatement of the year), but a number of other autism milestones took a great deal of hard work too.
It wasn’t so very long ago that Early Intervention was just a pipe dream, or that offering self-contained classrooms to autistic children who need that confinement was an unheard of practice. I’m certain this process will involve small and laborious steps. I’m also certain the ATN will succeed, and the moment can’t come too soon.
Somewhere out there soon, a baby will be born. In a few years his mom will approach his physician with her concerns, her worries, her fears. She may be told they’re nothing. She may be told to wait.
She may be told she’s right.
And if she is, hopefully she’ll be given the tools to help her child succeed in a compassionate, caring, and informed manner that won’t break her heart.
It all starts with a little hope.
For further information go to www.autismspeaks.org