At Oishei Children's Hospital, the turnaround time to diagnosis is being accelerated, thanks to The Children’s Guild Foundation Autism Spectrum Disorder Center. Opened in 2010, the center is among the first of its kind to use a family-focused, multidisciplinary approach to screen for a disorder that affects one out of every 110 youngsters.
During an initial, 90-minute assessment, each child is seen separately by a developmental pediatrician, child neurologist and child psychologist. According to the center’s medical director, this coordinated team approach allows physicians to expeditiously diagnose children and then triage them to appropriate treatment services as efficiently as possible.
“All three of us look at the child through a different lens,” explains Michelle Hartley-McAndrew, MD, a neurologist and clinical professor of pediatric neurology at the University of Buffalo. “Collectively, we’re trying to get a very good sense of that child – their strengths, what’s happened as they’ve grown and at different milestones, and where their parents have seen major changes, regressions and delays. Because there are many factors involved in an autism diagnosis, it’s valuable to have each of us offering our perspectives and making an educated assessment.”
In New York State, community agencies for children with autism abound. Too often, though, the key that opens the door to such services –namely, a timely, accurate diagnosis – eludes parents.
The diagnosis can be difficult to obtain precisely because the disorders along the autism spectrum are so challenging to pinpoint. Diagnosing a condition characterized by deficits in social interaction and communication can be a formidable task given that young children are still developing speech, social and reasoning skills.
“It’s not a nice, clean test, like if you were a diabetic. A lot of things can look like autism,” Hartley-McAndrew says. “If a child has hyperactivity, for example, they will have a lot of difficulty engaging with you, just as a child with autism would.” Such factors are examined more closely during the Autism Diagnostic Observation Schedule – ADOS, for short – widely considered the gold standard of autism testing.
If a child’s primary-care physician is uncertain whether his patient has autism, he might delay the diagnosis until the disorder definitively declares itself. If the child is truly autistic, valuable time for early intervention is lost.
“Getting that diagnosis out there a lot sooner gives kids a leg up on therapies and an improved outcome,” says Hartley-McAndrew. “Neurologically speaking, synapses are still forming in younger kids– the brain is more malleable, so it’s easier to manage their behaviors and train them in social and language interactions.”
Since it opened in January of 2010, the center has been briskly productive. Some 211 patients between the ages of 2 and 17 were assessed during the first year, half of whom were diagnosed with an autism spectrum disorder. Of those diagnosed, 84 percent were male – not surprising, given that boys are four times more likely than girls to be affected by autism. In the cases where children were not diagnosed with autism, they were found to have behavioral disorders, ADHD, anxiety or other conditions.
While it’s common for pediatricians to refer children to the center, many parents have discovered it on their own. As word has gotten out, families from all over Western New York’s eight-county region, and even New Jersey and Pennsylvania, have found their way here.
“Since we first announced the center’s formation, everyone has been so enthusiastic,” Hartley-McAndrew says. “We have been working collaboratively with many community agencies, and because we know so much about their programs out there, we can pass that information on to families.”
There are a lot of wonderful resources for children with autism,” she adds, “but we want to be the source for their diagnosis. We want to be a funnel for patients to go through, and then we can send them back out into the community with the information they need to get care.”
At the time of diagnosis, the center’s specialists arm parents with everything they need to get their child the requisite services. All receive an extensive guide on how to proceed in the first 100 days after an autism diagnosis as well as the New York State Guide to Special Education, which informs parents of their rights and teaches them how to advocate for their kids at school. In some cases, the center’s social worker offers guidance on school placements and Individual Education Plans. Parents also are invited to attend a monthly support group that the center cosponsors.
At the same visit, they receive individualized recommendations about interventions for their child, both in the community and at the hospital itself.
The Children’s Guild Foundation Autism Spectrum Disorder Center at Oishei Children's Hospital is the only provider of medically based diagnostic services for autism in Western New York; these are complemented by a comprehensive range of pediatric specialty services post-diagnosis, including occupational therapy, speech therapy and genetic testing. As many children with autism experience food aversions, some will be referred to the hospital’s feeding clinic. Those who have obstructive sleep apnea or difficulty regulating their circadian rhythm might be seen by specialists in the sleep lab.
“Everyone at the center is so motivated to help families and their children and to plug them into the resources they need,” Hartley-McAndrew says. “We’re always here to help if they feel like they’re running into a wall. We never want them to feel abandoned.”
Although the center’s primary mission is patient care, physicians are actively engaged in research aimed at better understanding the complex, and increasingly prevalent, autism spectrum disorders. Hartley-McAndrew and her colleagues have embarked on the early stages of a study with the radiology department at Oishei Children’s Hospital and the Neuroimaging Analysis Center at nearby Buffalo General Hospital that will study the pathology of autism using the latest imaging techniques
This year, the center hopes to expand on its mission by adding more follow-up sessions to monitor children’s progress and by starting a program for newly diagnosed patients.
“Everybody has been excited about the impact we’ve had so far,” she says. “Parents will tell me, ‘I’m so glad we did this. Now we know what to do.’
“When you get feedback like that, you know they feel very supported. You know that you’re helping.”