Parental involvement key in treating autistic kids

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By Gregory Ramey, Contributing Writer 5:13 PM Friday, January 29, 2010

My first job after graduation was as a classroom teacher with a group of eight 7- to 12-year-old autistic children. Autism is a severe developmental disorder that affects approximately one in 110 children, according to the latest statistics from the Centers for Disease Control and Prevention, and typically results in serious and chronic problems with communication and social interactions. There is no cure for autism, and many traditional treatments yield only modest results.

It was the toughest job I’ve ever had in my life. On most days I was physically and emotionally exhausted after being with these kids for five hours. I always wondered how parents handled the incredible stress of caring for their children. I quit my teaching job after two years, something these parents couldn’t do.

I came to admire the incredible courage, persistence and love these parents had for their children. Even so, many of these parents initially regarded the diagnosis of autism as a kind of psychological death sentence. Their love and compassion for their child was balanced with the realization that their family life would never be normal. They worried about the impact on siblings and the effects on their marriage. They were apprehensive about the future, concerned what would happen when they were no longer able to care for their child.

However, recent research provides new hope for these families. Early identification and intense intervention with autistic children resulted in a 17 point increase in their IQ scores and substantial improvement in their language and adaptive behavior, according to research published in the January 2010 issue of Pediatrics.

The research conducted by Dawson and her colleagues focused on the early identification of toddlers with autism or severe developmental disorders. They were enrolled in treatment at an average age of 23 months, with some children as young as 18 months. Forty-eight youngsters were randomly assigned to one of two groups, one being a traditional community program while the other approach was based upon the Early Start Denver Model (ESDM).

The ESDM treatment was intense. Therapists provided treatment in the child’s home for two hours per day, five days per week for two years. This model focuses on teaching strategies that use rewards, break tasks into small steps and utilize principles of learning derived from laboratory studies over the past 60 years.

Parental involvement was key in the ESDM model. While 10 hours of treatment per week may seem like a lot, the children were still in the care of others 158 hours per week. Parents were taught and expected to use the principles of ESDM with their children.

After two years of treatment, the ESDM group showed substantial improvement over the children treated in traditional programs. ESDM children were able to learn key motor skills, relate better with others and acquire eating, dressing and other milestones of normally developing children.

The ESDM program is not a cure for autism, but it appears to be a very effective method to substantially improve the learning performance of autistic children. These toddlers remained developmentally below their peers, but this program proved that early intervention can be effective. It remains unclear what will happen to these children once they are no longer receiving this intensive therapy.

This latest research represents hope for families, but it also requires action. The key is for these kids to be identified early, typically at 18 months of age. Parents need to be aggressive in speaking with their family doctor and request that an autism screening be conducted by 18 months of age, which is the standard of care recommended by the American Academy of Pediatrics.

Parental involvement in treatment is also essential. Parents must learn to become their children’s therapists, and be actively involved in learning and applying principles of applied behavior analysis. The goal is to surround the child with a 24-hour treatment approach, not simply when in the presence of a therapist.

I sometimes wonder about the kids from my classroom. I suspect their lives would have been very different if they could have had the intensive treatment now available to autistic kids and their families.

Gregory Ramey, Ph.D., is a child psychologist and vice president for outpatient services at The Children’s Medical Center of Dayton. For more of his columns, visit www.childrensdayton.org/ramey.

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