When you have a child with a disability or developmental disorder, one of the first steps of intervention is to begin assembling a team of specialists to support them. What that team looks like will vary by the child and their specific needs. My daughter has autism, for example, and her care team currently includes a special education teacher, an occupational/feeding therapist, and a developmental pediatrician.
Building this support team hasn’t been easy. It’s taken us years to get here and, sadly, our experience isn’t unique. Between battling with insurance, extensive eligibility evaluations, and finding providers with the elusive combination of scheduling availability and who your child connects with, it’s incredibly difficult. Add in a massive shortage of developmental pediatricians, and many children are left without access to the support they need, with critical developmental windows passing each month.
Each of these specialists has established unique relationships with my daughter, and we’ve seen so much positive growth in her since she began working with them. Her feeding therapist sees her weekly and shares in our celebrations with genuine joy when we report that she tried a new food. Her special education teacher is with her in class a few times a week, helping her develop her social and emotional skills, and then sharing her progress with my husband and me, which we otherwise wouldn’t know because we aren’t there to see it for ourselves.
Her developmental pediatrician has been the MVP, though, because she has extensive education and training in child behavior and development. Her expertise allows her to advocate for my daughter with an authority that I can’t. She knows what codes to put in my daughter’s chart to make sure insurance covers the ongoing costs of certain treatments, and she never hesitates to weigh in when my husband and I come to her with questions about our daughter’s IEP. She has been invaluable in helping us navigate the complexities of raising a child on the spectrum, and she makes a point at every check-in appointment to tell my husband and me that we’re doing a good job — a validation that lets us exhale just a little bit.
I was reminded just how lucky we’ve been when, over the span of about four weeks, we learned that my daughter’s special education teacher would be moving to a new state, her occupational/feeding therapist would be transitioning from private practice to the school system (but not at our daughter’s school), and her developmental pediatrician was retiring.
In her letter to patients, the developmental pediatrician told us that there was no one else in her practice to transition her patients’ care to. She explained that despite searching for the last four years, the group had not been successful in finding another developmental pediatrician to add to the practice. When we messaged our general pediatrician for a referral, we even said we’d be willing to drive a few hours if needed, but she wrote back with heartbreaking news: there was simply no one else.
And, unlike so many rural Americans, it’s not that we live in a medical desert. We live within 30 to 40 minutes of Duke University and The University of North Carolina at Chapel Hill, both of which have amazing medical programs across seemingly endless specialties, but due to demand, they’re only accepting patients who have higher support needs than my daughter.
In 2023, The American Academy of Pediatrics (AAP), estimated there to be one developmental pediatrician per 100,000 US children, and future forecasting implies this shortage won’t be ending any time soon. At the same time, the need for more providers in this specialty continues to grow: between 1997 and 2017, there was a 5% rise in overall neurodevelopmental disorders among children, according to the AAP. In particular there has been a huge increase in kids like my daughter who have been diagnosed with autism. In the span of 20 years, autism diagnoses have increased from 1 in 150 children in 2000 to 1 in 36 children in 2023.
Of course, we like and trust our daughter’s primary care doctor. She has experience working with kids on the spectrum and I have no doubt that she’s knowledgeable, but she’s not a specialist. Autism is complex and no two kids are exactly alike. My daughter has low support needs, but this label is based on outdated evaluation methods that look more at how autism presents to the people around the person rather than considering everything happening internally. A generalist just doesn’t give me the same confidence that she won’t fall through the cracks.
Fortunately, for us, the school has a replacement special education teacher lined up, and a new occupational therapist is set to join the practice we go to within the next couple of months, but it will take time to build trusting relationships again. I know it will gradually happen, and a year from now I hope we’re back to a place where we feel confident about the support we have in place for our daughter.
Still, there’s no escaping the reality that for the foreseeable future there will be no replacing her developmental pediatrician, and I can’t help but worry what this loss will mean for her moving forward.
Ashley Ziegler is a freelance writer living outside Raleigh, NC, with her two young daughters and husband. She’s written across a range of topics throughout her career but especially loves covering all things pregnancy, parenting, lifestyle, advocacy, and maternal health.
