A Medical Home for Children with Autism
Primary care pediatricians know, in a deep and sustained way, the community and the families they serve, says Dr. Kraft. They understand the local school system and the resources available; they are connected to local therapists and support groups. This is all critical when it comes to serving children who have ASD.
“These kids get lost in the system,” says Dr. Kraft. “The best place for them is going to be the pediatric medical home.”
Pediatricians provide an important point of contact for the maze of appointments and consultations that come with a diagnosis of ASD. Specialists can be difficult to find; it may be unclear exactly which services are needed when. The pediatric medical home is a place to come back to for support and guidance, says Dr. Kraft.
“Where primary care pediatricians are really going to be most important is in the follow-up,” she says.
When a child comes in for an appointment, she recommends laying the groundwork for a conversation related specifically to development.
“Let’s start thinking about autism and developmental disabilities in a chronic care management framework,” she says. “When you see a child, for example, for their well visit or you see them because of their asthma exacerbation or their cough or congestion, tell that family, ‘Let’s have a visit just to discuss what your child is doing developmentally and what services they’re getting.’”
From there, open a line of communication with the family driving the topics.
“What you do with that first visit is, first of all, get the parents’ greatest concern about their child,” she says. “Figure out what the biggest and the most important priority is, and then figure out what you can do and what a family might want to do to get there.”
It’s a critical first step as every journey is going to be different. One child may need speech and language therapy, another may have sensory problems or behavioral challenges. Some issues come up suddenly for some children, like trouble falling or staying asleep or chronic constipation.
Dr. Kraft recommends monthly visits early on after a developmental challenge like ASD is identified. Track from that initial visit onward the services the child is receiving – including Individualized Education Plans from the school, speech and behavior evaluations and other information – so that progress can be documented and plans altered if needs change.
She points to telehealth appointments as one way to ease the burdens of time and travel. It’s also a way to focus on how the parents are managing both their child’s needs and the support available to their family.
“Telehealth gives you a lot of time with the parents to talk about what they’ve been doing in terms of connecting to resources, what their barriers are and where we go moving forward,” she says.
She’s found keeping expectations realistic in terms of the progress the family may see from one visit to the next, especially early on, as it takes time both to understand what will best serve the child and what is available to the family.
“You don’t have to solve everything in one visit, because you can’t, but you can solve one or two things in that visit and know that three to four weeks later, you’re going to follow-up,” Dr. Kraft says.
Often, it can take as long as three to four months to feel like there’s a cohesive plan that matches the family’s needs. At that point, the primary care visits often become less frequent.
“Once you actually have those services plugged in, then I follow up every three months to see where that child’s progress is.”
And it’s always important to tap into families as a source of information for others in similar situations, says Dr. Kraft.
“The one last thing that I always ask parents and then document is this: what’s your latest, great resource? What’s that new thing out there that I need to know about?”
She’s had parents discover a range of new opportunities she was able to share, like social skills classes, karate lessons geared towards children with developmental challenges, or a new play group available through the school system.