When psychiatric nurse practitioner Judy Coucouvanis began working with children with autism 35 years ago, the known prevalence rate for the developmental disorder was about one in 10,000 children.
The most recent information from the U.S. Centers for Disease Control, published earlier this year, lists the prevalence of autism spectrum disorders as one in every 88 U.S. children; in 2000, it was one in 150 children.
“I never thought I'd see one in 88 children,” says Coucouvanis, who is on the clinical staff of the Child and Adolescent Division in the Department of Psychiatry at the University of Michigan in Ann Arbor. Her days are spent helping children and parents deal with the many complex challenges that autism spectrum disorders present.
She will share practical tips for families at a free community education program on Aug. 23 in Fort Wayne, and the following day will be the key presenter for mental health professionals and educators at a continuing education seminar. Both sessions are sponsored by Park Center, a community mental health provider.
Autism spectrum disorders, or ASD, is the nomenclature used today to describe the gamut of behaviors and communication problems that comprise the “triad of impairment” on the autism spectrum. Disorders include some combination of varying degrees within these symptom categories: deficits in social interaction skills; deficits in communication skills; and restricted or repetitive patterns of behaviors, interests or activities.
The brains of children with ASD work differently, and the root cause still is not known. Symptoms vary person to person, with some on the spectrum having no or minimal intellectual disability but noticeable quirky habits or behaviors; others are incommunicative, seemingly locked in a world of their own.
ASDs are from-birth disabilities. Symptoms are present by age 3 and often earlier, though the child may be in school before an official diagnosis is made. Working with parents is the gateway to helping the child, Coucouvanis says.
“I'm a very strong believer in behavioral approaches, but I'm a strong believer in teaching. We know every child with autism can learn. We just have to know how to teach them. When you have a child with autism, being a teacher is really one of your primary roles. You have to teach your child to regulate his or her behavior, one step at a time. Start to understand the circumstances surrounding a specific behavior. When is the child having a tantrum? They often occur in transitions, going from something they like doing to something they don't like doing,” she explains.
Taking a punitive approach to children with ASD is ineffective, Coucouvanis cautions. Parents need to replace thoughts and efforts targeted at stopping bad behaviors with approaches that encourage wanted behaviors.
These children often respond well to visual teaching aids rather than verbal. She shares an example from her own clinical practice of a child who was obsessed with everyone sitting at the same spot at very meal. His rigidity was turning mealtime into unpleasant family time, especially for the boy's younger siblings.
The mother used three object shapes to help her son be more flexible, placing them at three places at the table. Corresponding shapes were put in three envelopes. When the children came to the table, each drew a shape out of the envelope and sat at the place with that shape. The shapes were changed periodically, not daily.
The boy with ASD, as well as his siblings, responded positively. Coucouvanis says eventually the visual aids were not needed, and the boy could handle seating rotations.
Linda Hartley, a licensed clinical social worker, is director of Park Center's Family Education Center, which operates a K-12 day treatment program for emotionally disturbed children. It is the contracted service provider for children in the Fort Wayne Community Schools district who cannot function even in a special-education classroom.
This year, and particularly this summer, the center has the highest number of children ever enrolled. About one in five has ASD, though most have another diagnosis, such as attention deficit hyperactivity disorder (ADHD) or oppositional defiant disorder (ODD).
Part of the issue with diagnoses, she says, relates to what insurance will cover. Changes to Indiana Medicaid have also curtailed services to children with ASD, Hartley says.
Parents of children with autism are usually on overload, Hartley says. The need for constant supervision of a child with ASD can be overwhelming, which is why parents must arm themselves with education and with a team of people, from teachers to extended family to neighbors and friends.
“You really have to have treatment along the continuum of development throughout high school,” Hartley says. “Parents are in this for the long haul.”
Coucouvanis agrees, saying one of the first points of advice she gives parents is to start with one thing, one problem.
“Focus on what is most problematic to the parents. Once you get that stabilized, then you can move through the day. Don't think about changing everything at once. I also want people to think about what is going to be appropriate in five years, in 10 years, not just what's appropriate today.
“My advice is to try not to find the magic formula,” Coucouvanis says. “It takes hard work to raise a child with ASD.”