By Lenore Franzen
Parents are often the first to notice when something is wrong. Their babies may arch their backs, flap their hands repeatedly, or not smile. Something isn't quite right.
“We had questions all along,” said Randy Kaphing, father of 26-month-old Frank. “When he was little, it was like holding a two-by-four. And there was no eye contact. We often described him as ‘our strange little boy'.”
Frank's parents sought help at Courage Center right away. Patty Radoc, a speech therapist at Courage St. Croix in Stillwater, began working with Frank at 17 months, even though he wasn't diagnosed with autism spectrum disorder (ASD) until he was 2 years old (see “An autism primer”).
“It made a huge difference that Frank began therapy so young,” said Radoc. “Many kids aren't diagnosed until age 3. Frank is a whole year ahead.” She added, “Frank is where he is primarily because his parents have been proactive in getting him services and urging doctors to seek an answer to his behaviors. Frank's parents also work with him a lot at home.”
Kaphing is thrilled with his son's gains. “Frank has made tremendous progress in everything - language, eye contact, socialization,” he said. “Courage Center is the reason he's going to school now. The therapists here taught him to sit and attend and be in a structured environment.”
Early identification, early intervention
As diagnoses of autism spectrum disorder (ASD) grow faster than those of any other developmental disability, experts are pushing to identify the symptoms as early as possible. “Early identification gives us an opportunity to head off certain behaviors before they begin,” explained Radoc.
Nobody knows what causes ASD. And because the disorder manifests itself differently in every child, making a clear diagnosis is difficult without a battery of tests. Some of the characteristics of the disorder - fussiness or not talking - may be interpreted as behaviors a child will grow out of.
But parents don't need an ironclad diagnosis before they can look for help.
“At first, kids may be referred to us for speech therapy because of a communication difficulty,” said Katie Pieper, manager of Courage's pediatric clinic in Burnsville. “Having a diagnosis isn't as important to us as addressing a child's particular needs. While we're working with them, we often notice other issues, which prompts a conversation with parents and, with their permission, the child's pediatrician.”
Full spectrum of services
The 75-year-old Courage Center is best known for its rehabilitation services for people with physical disabilities. But Courage Center has been providing therapy to children with ASD for more than 30 years and now serves those kids at all of its Twin Cities locations - Golden Valley, Burnsville, Stillwater, and Forest Lake.
Adam Melo, a brown-eyed boy with a disarming grin and a preference for steak over cereal, has been receiving services at Courage Center. Like Frank, Adam was diagnosed with ASD early, prompting immediate intervention. He is now 6.
Adam has speech therapy in his kindergarten once a week, attends Fraser School - an early childhood center in Minneapolis that works with children with ASD - and has four separate therapy sessions at Courage's pediatric clinic in Burnsville. “Every place Adam receives services has been great,” said his mother, Anna. “But the most progress he's seen is from Courage Center. Here he gets the one-on-one.”
Courage offers children with ASD a full spectrum of services, from neuropsychological testing and speech, occupational, and physical therapies to one-on-one aquatics therapy in a heated pool, as well as enrichment classes in handwriting and communication. For kids who are medically fragile or find the transition from home to clinic difficult, Courage provides home-based treatment. Courage also partners with the Autism Society of Minnesota to host a popular north-woods residential camping experience each summer (visit AUSM.org for more information and read about Courage Camps in our Camp guide).
Courage's facilities are also continuing to expand. Sensory gyms at the Burnsville and St. Croix clinics boast a climbing wall, suspension swings, a zip line, crash pit, and plenty of other equipment to stimulate a child's body and brain. Therapy rooms feature one-way observation areas. Outdoor park and play areas give children types of environments to learn in, and a fitness center appeals to teen and adult clients.
Given its long history in the disability field, Courage Center has particular expertise in assistive technology. Children with ASD are very visual, and augmentative devices serve as bridges for communication. Assistive technology can range from a toy activated by a single switch to a computerized device that allows children to make sentences.
“When parents come to Courage, they're looking for help for their child but also help for themselves,” said Jeff Dingee, program director for therapy services at Courage St. Croix. “We're very parent friendly. We emphasize parent education and involvement. Schedules permitting, parents sit in on therapy sessions, where they learn techniques to use at home.”
Many of Courage's therapists have special training in working with children with ASD. They discuss a child's progress with the parents continually and offer recommendations for special equipment.
“We also connect parents with other resources and work closely with schools and daycares to make sure therapy is consistent and complementary,” continued Dingee. “Our social workers help parents navigate insurance requirements, find respite care, and determine eligibility for waivers and Medical Assistance.”
Courage offers therapy to every age group, helping kids make those tough transitions as adolescents and teens. “We are committed to people throughout their life,” said Dingee. The age range of current clients with ASD that Courage serves is 1 to 38 years.
With its expertise in treatment and range of services, Courage Center is all about successful outcomes. Frank and Adam are proof. “Be proactive,” urged Frank's dad. “I can't imagine life without him.”
An Autism Primer
Autism is one of five disorders that falls under the umbrella of Pervasive Developmental Disorders (PDD), neurological disorders characterized by varying degrees of impairment in communication skills, social interactions, and repetitive patterns of behavior. The five disorders are: autism spectrum disorder (ASD), Asperger's disorder, childhood degenerative disorder, Rett's disorder, and pervasive developmental disorder - not otherwise specified (PDD - NOS).
ASD, the most common of the disorders, affects an estimated 1 in 166 births. The Centers for Disease Control reports that ASD is the second most common serious developmental disability after mental retardation or intellectual impairment. Boys are four times more likely than girls to have ASD.
For more information
Courage Center
Autism Society of Minnesota
Minnesota Programs for Children with Disabilities
http://www.cfl.state.mn.us/ecfi
Minnesota Department of Education - Special Education
http://www.cfl.state.mn.us/SPECED
Autism Society of America
First Signs
National Institute of Mental Health
(click on “Health Information,” then “Autism”)
Centers for Disease Control and Prevention
