Early detection of developmental delays is critical for children with autism. Don’t let your doctor dismiss your concerns — or your kid could miss out on opportunities for crucial early intervention.
Don’t ‘wait and see.’
Gabriel is a bright, adorable 5-year-old. He runs around the park, playing on the equipment, occasionally checking in with his mom, even trying, when urged, to include his 3-year-old sister, Cecilia, in the park’s cool climbing structure.
“It’s his favorite,” said his mom, Tara Baker of Eagan.
Things weren’t always this carefree for Gabriel.
It’s only through years of therapy that he’s been able to navigate a complex situation like a playground with other children.
Three years ago, Gabriel was diagnosed with autism at Minneapolis-based Fraser — Minnesota’s largest provider of autism services — and the resulting years of intervention have changed everything for this family.
Kindergarten started this fall and Gabriel has fit right in with his classmates. He leaves class for speech and occupational therapy and a social-skills group, but otherwise his days are fairly typical.
Baker attributes this success to his time in autism day treatment. It was there that she noticed the most significant change in her son’s ability to communicate and interact.
Barriers to diagnosis
Autism is a developmental disorder that affects an estimated 1 in 45 children in the U.S., according to a new report released by the Centers for Disease Control. New research continues to inform our understanding of the disorder — what causes it, how to treat it and most importantly, how to catch it early.
Despite controversial public debates about the disorder, most experts agree on some key points: It’s present at an early age, 6 months, according to a new study, and early intervention is key to lifelong success.
These findings point directly to early diagnosis — before the age of 2 — as a clarion call for primary-care providers, who are on the front lines when it comes to detecting developmental disorders.
And yet, at times, those front lines can become barriers to families getting the help they need. Research published in an issue of the Journal of Pediatrics clarified those barriers. Families are experiencing delays in diagnosing their children with developmental delays, according to the study, and those delays correlate directly to their primary-care provider’s response to their concerns.
In particular children with autism experience the longest average delay, 2.7 years, from the date their parents first express a concern.
‘He’ll grow out of it’
Baker, along with thousands of other parents, experienced this first-hand with her son.
She first brought concerns to her pediatrician at her son’s 12-month check-up.
“I was mainly concerned with his language development,” Baker said.
She was told to wait and see.
“At 18 months, I flat out knew there was something wrong, but still she told me to wait and see.” The clinic, in response to Baker’s insistence, did administer a specialized screening tool, the Modified Checklist for Autism in Toddlers (M-CHAT), which indicates if a child is at risk for autism.
Gabriel scored high enough on this screening to be flagged “at risk.”
“The public health nurse happened to be at the clinic that day,” Baker said. “She popped in and said, ‘He’ll grow out of it.’”
They gave Baker information on ways to encourage language development and told her to follow-up at the next appointment.
Proactive pediatrician
Within a month, the family had moved, and they got a new pediatrician.
This time around, Baker knew she wanted a pediatrician who would be more proactive, but wanted to get her son in as soon as possible.
So she found a good clinic and took the first opening.
“She’s still our pediatrician,” Baker said. “We love her.”
That first appointment lasted for 1.5 hours and ended with Baker walking out the door with referrals to speech therapy, occupational therapy and an autism diagnosis/assessment that would open the door to early intervention services.
Baker felt she had finally been heard and her concerns were taken seriously.
“Our new pediatrician respects that parents oftentimes do know best. They know their kids best. I feel it’s a true partnership,” she said.
Gabriel got his diagnosis at a young age — 2 years old — compared to most children with autism. The national average is 5 years old.
Addressing doctor delays
It’s this kind of outcome that Maria McGannon, a certified pediatric nurse practitioner, points to when talking about the new program she implemented at South Lake Pediatrics, which has six Twin Cities locations.
In partnership with Fraser, McGannon set out to address delays in diagnosing developmental disorders in their patients.
The resulting program involves educating physicians about screening and disorders like autism, but most important is setting up a process for referrals.
“Our approach has taken away the barriers,” McGannon said. “We no longer respond to parental concerns with ‘wait and see.’”
At South Lake Pediatrics, the process involves screening and immediate referrals — to the Help Me Grow program and Fraser — for those who have results that indicate they’re at risk.
“Four to five years ago, my response to parent concerns would have been very different. I followed the wait-and-see route too,” McGannon said. “But now we’re a unique practice in that we don’t sit on them any longer.”
Early interventions lost
The American Academy of Pediatrics issued a recommendation that all children be screened for developmental disorders at regular intervals during well-child visits. It’s this screening that indicates if a child is at risk for developmental delays such as autism, attention deficit disorder, intellectual disabilities and others.
Despite this recommendation, less than half of the children in the U.S. are ever screened.
This rate is problematic because one in six children today have a developmental disability, said Katie Green, a heath communications specialist with a program through the CDC called Learn the Signs. Act Early.
“Don’t neglect early childhood. We know that doing screening and listening to parent concerns is key to getting kids the help they need,” Green said. “If a child isn’t being screened and parents aren’t being vigilant, they aren’t being diagnosed until school, so they’ve missed the opportunity for early intervention.”
The Learn the Signs. Act Early program educates healthcare providers. It also provides tools to parents, such as developmental checklists and the Amazing Me book, which details healthy development milestones in infants and young children.
Empowering families
Parents are often the driving force behind early detection of developmental disorders.
Wendy Berghorst, director of Healthcare Services at Fraser, said it’s critical that families have a good family care provider who knows their child and is willing to make referrals.
Putting in the time to find that type of doctor for your family isn’t always easy.
One way is to seek out the right fit before your child is born. Most pediatric clinics offer a prenatal visit for expecting parents.
Liz Hass, an advanced practice registered nurse at South Lake Pediatrics, strongly recommends that families go to those.
“You can find a lot of information now online,” Hass said. “But walking in and meeting someone makes such a difference. It’s the only way to get a feel for if this practice will work with you and your family.”
Finding a good fit
It’s that good fit and the relationship families develop with their primary-care physician that’s crucial to getting a timely diagnosis.
“You need that click,” said Hass. “You need to feel like you’re heard, you’re being listened to and that this person cares.”
It’s this relationship and level of caring that made all the difference for Baker’s family.
“I pushed for it. I kept bringing it up. I fought to get that diagnosis,” Baker said. “I knew I had to find someone who would listen.”
Baker said her change of pediatrician, accelerated by a relocation, made all the difference in her son getting the help he needed.
“I took the time to educate myself,” she said. “If I had a different personality type, it would have been really easy to just trust the doctor because I trusted her for all the other things.”
Resources
Learn the Signs. Act Early | cdc.gov/ncbddd/actearly
Help Me Grow | helpmegrowmn.org
Fraser | fraser.org
More: Free online autism screening tools and more can be found at m-chat.org, autismspeaks.org and firstsigns.org.
Shannon Andreson lives in Minnetonka with her husband and two delightfully quirky sons. She works with local nonprofits and writes for and manages a blog at cea4autism.org.
