Published June 19, 2014
For families with a child on the autism spectrum, early intervention is the mantra. The earlier a child is diagnosed, the sooner intervention can start, making a tremendous difference in the life of both the child and family.
But early diagnosis depends on early evaluation, and in too many cities there just aren’t enough specialists to provide efficient diagnoses; most children show signs of autism spectrum disorder before they are 3 years old.
“In many places, it can take seven to nine months to get a diagnosis,” explains Michelle Hartley-McAndrew, UB clinical assistant professor of child neurology and medical director of The Children’s Guild Foundation Autism Spectrum Disorder Center at Women & Children's Hospital of Buffalo. “Seven to nine months is a lifetime for a parent to wait for a diagnosis with a child that young. Here at the center, we are working very hard to keep the waiting time down.”
Now, thanks to the center’s expanded schedule of clinics, which started in March, more Western New York families with children on the autism spectrum are receiving faster diagnoses. While each case varies, the typical wait until the first appointment is three months, with follow-up diagnosis taking place between one and three months afterward, depending on the need for further testing.
Located in Women & Children’s Hospital of Buffalo and run by the hospital and UB, the center now operates two weekly evaluation clinics, allowing for the diagnosis of more than 450 children annually, up from 275.
“Autism is such a difficult diagnosis,” says Hartley-McAndrew, noting that proper diagnosis often depends on multiple evaluations by specialists, including a pediatric neurologist, a psychologist and a developmental pediatrician.
“The idea was to make the whole process—from diagnosis to treatment plan—faster, more efficient and less difficult for the family and the patient,” she continues. “Doctors’ appointments are difficult for these children, so we thought, you need a one-stop shop. We schedule the children for their three appointments to happen one after the other.”
In addition to the doctors’ visits, the center requires that parents and teachers complete extensive questionnaires if the child is in school or day care. The team of specialists at the center then discusses each patient individually and makes a diagnosis collectively.
Once a diagnosis is made, the family can take advantage of a multidisciplinary array of resources provided at, or through, the center.
“I always had a place in my heart for children with disabilities,” notes Hartley-McAndrew. That concern is evident for the families the center serves and the emotional journey that they undertake when they first suspect something is wrong with their child, who, after developing normally, becomes unresponsive.
She recounts: “Parents will tell me, ‘My daughter used to come running up to me when I came home, saying, Mommy! Mommy!’ Now she just spins.’”
Hartley-McAndrew’s motivation was to create one central place for families so they always knew exactly where to go with all of their concerns.
“Our vision was to be there in as many ways as possible for our families,” says Hartley-McAndrew. “Parents have no idea how to navigate what’s out there. So when we started the center in 2009, we visited as many other centers as we could to see what works and what’s needed.”
The result is one of the most comprehensive autism centers in the U.S., among the first in the country to diagnose and treat children with this complex and increasingly prevalent disorder using a family-focused, multidisciplinary approach.
In addition to medical specialists and social workers, the center emphasizes connections among parents. Among other services, it operates a very popular Autism Spectrum Disorders Parent Group. Led by the center’s program coordinator and a parent of a child with autism, the group meets monthly to share information.
The center also collaborates with Explore & More Children’s Museum to create “Au-Some Evenings,” one evening per month where children with autism spectrum disorders and their families can learn and play together in an understanding and supportive environment, free of charge. More than 100 people attend the events on a regular basis.
Services provided by the center and listed on the center’s website include resources for parents and teachers, such as helpful tips on how to toilet train a child with autism and even a list of local haircutting shops that are experienced in dealing with children with special needs.
For more information, go to the center's website.