Katie McGee watched her son’s words disappear one by one. Sean only used five or six words, but once he turned 1 they began to vanish. With three other kids at home and a background as a pediatric nurse, McGee knew something was wrong. Despite hearing from her pediatrician that Sean was just a late talker, she got her son into therapy as soon as possible.
“I called Early Intervention and got speech, occupational and developmental therapies started in the home when he was around 18 or 19 months old,” the Westchester mom says.
When Sean was diagnosed with autism at 2½, McGee wasn’t surprised. She just continued getting treatment for him, hoping to improve his quality of life.
By following her gut, McGee did the right thing for her son. Experts say it’s best to start treatment as soon as possible with a child on the autism spectrum. Depending on the child’s age at diagnosis, most services are filtered through the family’s local school district.
“The main thing we focus on is getting the right educational placement. There are a lot of things you can do to support the child and the family, but it’s important to start with right educational placement,” says Dr. Kathleen McKenna, director of the psychosis and special diagnostic program at Children’s Memorial Hospital."It’s not always so easy and not all teachers have training in autism.”
Children under the age of 3 may qualify for the Early Intervention program that includes speech therapy, developmental therapy and occupational therapy, as McGee used for her son. Kids over 3 are referred to their school system for services.
“Parents should contact the school and see what services are available. There may be a therapeutic preschool with smaller classes and more individual attention,” says McKenna.
Just because a child is on the autistic spectrum doesn’t mean he will qualify for special education services, though.
“Education is just looking for … [them] to get the same education as other kids, so not all qualif y,” says Susan Szekely, executive director at the Illinois Center for Autism in Fairview Heights.
Outside of the school setting, options abound for parents looking for other treatment options. McGee’s son, now 4, goes to speech and occupational therapy twice a week, has a home therapy session three hours a day during the week and recently started attending music therapy. The occupational therapist works with sensory needs, which for Sean means needing to swing and jump around.
“She suggested making some changes at home, so we put a swing in the basement and made a soft pile of bean bags to crash into,” says McGee."We have several trampolines to jump on and that all worked toward making him happy.”
Sean’s home therapy sessions are led by a team of teachers who tutor him while the speech and occupational therapies are done at a Floortime clinic. Floortime, officially known as the Developmental, Individual Differences, Relationship-based approach, is a philosophy of therapy that focuses on getting the child to interact with other people. According to The Floortime Foundation Web site,"the goal of treatment is to help the child master the healthy emotional milestones that were missed in his early development and that are critical to learning.”
McGee initially started out with Applied Behavior Analysis therapy with Sean, one of the most commonly used therapies with autism. ABA, in simple terms, uses positive reinforcement to alter negative behaviors and teach new ones. It is one of few treatments proven to work with autism.
“His home program started out with ABA,” says McGee,"and shortly after we started I got introduced to Floortime and it just made sense to me. I didn’t just want a kid that recited ABCs, I wanted a kid who could look me in the eye and give me a hug, so I was very drawn to that approach.”
Sean’s music therapy focuses on goals he’s working on in his other therapies. For example, McGee says Sean often says words randomly, so if he does this in music therapy, they create a song around the word to help with his sensitivity to sounds.
The type of treatment a family ultimately decides on really depends on the child, though, since no one treatment works universally with all autism cases. Many parents try multiple treatments, looking for one that might help their child.
“I understand they have a need to leave no stone left unturned, so I give them the information I have and discourage them from those [treatments] that are potentially dangerous,” says McKenna.
Some of the more dangerous alternative treatments include antifungal medications and kelation, which binds metals in the body and removes them. For parents desperate to find something to help their child, though, these alternative treatments can be tempting.
“Parents have to be careful. I try to help parents realize this is a marathon. Just because you do all sorts of treatments, it’s not clear that they’re going to work,” says McKenna.
And once parents do find a treatment that works for their child, money problems often come into play.
“Unfortunately insurance doesn’t usually cover ABA, and some insurance companies don’t cover anything with autism,” says McKenna."It’s seen as a luxury or they don’t cover developmental disorders. Parents can face unbelievable battles.”
The McGee family decided early on that, as much as possible, money would not be an issue when it came to getting treatment for Sean.
“The doctor visits are helped with insurance, but my husband and I felt that to give him the best chance at a full life we wanted to really push, just give him every chance early on. We do spend basically every last dime getting therapy,” says McGee.
Despite all the time and money put into his treatments, McGee says it’s worth it.
She says:"He’s come a long way with speech. Just before 3, he said his first words again, and now he’s not quite 5 and he can read over 100 words. He’s able to ask for anything he wants.” Even early on when it wasn’t clear whether any of the treatments were working, McGee says they still helped."I think it made me feel like I was doing everything I could.”
Jennifer Gilbert is associate editor of Chicago Parent.