Become an Advocate for Your Child: An Asperger's Story
Sometimes a parent needs to trust their instincts. Sometimes experts can be wrong.
Snoa Garrigan learned this after more than six years of trying to get answers about her son, Luke, now 11 and only recently diagnosed with Asperger's syndrome, a high-functioning form of autism.
Garrigan describes Luke as a very passive baby who rarely cried. At 18 months, she began to suspect there might be something going on when he would line up the alphabet refrigerator magnets not only in a straight line, but in correct order. At 2, he became overly obsessed with trucks, then dinosaurs and then Spiderman. Doctors dismissed her concerns about autism. By age 5, Luke began experiencing tics and was diagnosed with Tourrette's syndrome.
"At the time, it made sense, so I accepted that diagnosis," Garrigan explained. "He still exhibited some quirky behaviors, but doctors explained that ADHD and obsessive-compulsive disorder can often accompany Tourrette's, so I knew his behaviors could be related to that, but my gut instinct kept telling me it was something more."
Once Luke entered third grade, however, things began to change, and Garrigan began to dig deeper for answers. Luke, who had always been an exceptionally bright child and good student, began having difficulty in school and would put his head down on his desk and not do his work during class. Garrigan also noticed Luke was depressed, so she sought the help of a psychiatrist, who began treating him for ADD. They tried behavior therapy, and it did not work; as a last resort, they tried non-stimulant medication with little change, so then they tried a stimulant medication that caused Luke to have hallucinations and react violently. They immediately stopped the medication, but Garrigan was left feeling even more frustrated and worried.
"Once he began fourth grade, the school began to label Luke as having a behavior problem, and I knew my child and knew this was not the case," Garrigan says. "I knew there was something else going on, and I refused to accept this label and kept pushing for more answers."
Finally, Luke's physiatrist suggested he may have Asperger's syndrome, and it all finally made sense for Garrigan. After spending nearly a year on the waiting list for the Greensboro TEACCH Center — a program for individuals of all ages with autism spectrum disorders run by the University of North Carolina at Greensboro — the Garrigans were finally able to have Luke evaluated and received the official diagnosis of Autism Spectrum Disorder (ASD) in January of this year.
"Our psychiatrist was worried I'd be upset by an autism diagnosis, but after so many years of getting wrong diagnoses, it felt like a relief to finally have a definitive answer. I felt validated and felt good that we could now pursue the right path to get Luke the help he needed," she says. "The past several years have taken a mental toll on my family. Getting the ASD diagnosis felt like a weight has been lifted off our shoulders."
Now a fifth-grader at a magnet school in Greensboro, Luke is finally receiving the special services he needs to succeed in school.
"Trust your instincts as a parent, keep pushing for answers until you find someone who will help you," she adds. "So many kids get lost in the mix and it's so easy for them to be labeled as having behavior problems, but if you feel it's more, keep pushing until you find the answer. Be an advocate for your child."
Snoa and Joe Garrigan live in Greensboro with their two children, Luke Bryant, age 11 and Naomi Huffman, age 8.