When my son was 18 months old and still not walking or linking two words together meaningfully, I suspected he might have autism. My family doctor told me not to worry, saying all children develop at different rates, and boys are notoriously slow. It was another two-and-a-half years before my nagging doubt was confirmed and he was diagnosed with autism by a psychologist.
My story is not unique: many families face delays between when they first flag developmental concerns to when their kid is finally assessed and diagnosed.
But that could change due to recommendations released today [October 24, 2019] by the Canadian Paediatric Society (CPS). In a new position statement, paediatrians are being encouraged to flag signs of autism in babies as young as six months old. The new CPS recommendations outline a national approach to detect, diagnose and treat kids with the lifelong neurodevelopmental disorder.
How I knew my son had autism “We are really emphasising the important role that community physicians play in autism assessment,” says Lonnie Zwaigenbaum, director of autism research at the University of Alberta and co-chair of the task force on autism assessment for the Canadian Paediatric Society. The new approach to autism care would also speed up the diagnosis process and help kids get the intervention support they need, faster—a huge win for families in autism limbo.
The early detection guidelines recommend that doctors actively look for signs of ASD during well-baby appointments, starting at six months. To do this, they’re urging physicians to start asking questions around developmental milestones that might flag an issue, such as reduced facial expressions or an absence of babbling, during each visit.
“The research suggests that the features of autism are probably extremely subtle at six months, and we would anticipate that the early signs are more likely to be apparent—both to families and to physicians—closer to the first birthday,” Zwaigenbaum says.
During a typical well-baby checkup, the doctor would check if parents have any concerns, and ask age-specific questions about how the child is communicating and moving around. This conversation creates an opportunity to dig a little deeper in regards to a child’s skills in those areas. For example, if a child isn’t yet talking, a physician could ask if the baby or toddler communicates in other ways, such as making direct eye contact, smiling, or using gestures like pointing, in which case they would be less concerned.
“It expands the conversation around early development, to focus on areas that are specifically affected in autism,” says Zwaigenbaum.
At the same time, the new recommendations call for physicians to have a more active role in autism assessment and diagnosis. This means they won’t necessarily refer a child they suspect has autism to a specialist—rather, it opens the door for paediatricians to administer autism assessment tools such as questionnaires, and potentially make the diagnosis themselves, providing they have undergone adequate training to be able to take on such a role.
“At a diagnosis rate in Canada of 1 in 66 kids, it’s difficult to insist that autism be a diagnosis that can only take place at a highly specialized centre and by a medical sub-specialist,” says Zwaigenbaum. “We just want to make sure that kids are getting the assessment they need.”
Empowering community physicians to administer diagnostic tools will eliminate existing hiccups in the system, like the time lag we faced. Offering multiple pathways to diagnosis—whether through a traditional autism clinic or a family paediatrician—would also help kids get help faster. It’s well known that an early diagnosis followed by intense behavioural and educational intervention leads to better long-term outcomes.
With the new CPS guidelines, it is hoped that community doctors will become the “medical home” for kids with autism. This means they’ll be the ones managing additional mental or physical health concerns that can co-occur with autism—anxiety, gastrointestinal issues like constipation, or sleep difficulties. This will take the pressure off parents, who often end up quarterbacking the treatment process between specialists and therapists.
“We need to support and empower the primary care physicians in providing that critical ongoing role, rather than thinking that kids with autism can only get care at specialized clinics,” says Zwaigenbaum.