Meeting Point: Latest From Lovaas

February 07

Meeting Point: Latest From Lovaas

Searching for Answers
Part 1 of a 4-part series

"When our daughter was diagnosed with autism," says Bronwyn's mother, "it was not the diagnosis itself, but what happened afterwards that was the first real disappointment for us. The developmental pediatrician had no real plan for what to do." Bronwyn's father adds, "The doctor gave us a few names of people to contact, but the gist of the conversation was, 'Here's your diagnosis...good luck with that.'" So began one family's endeavor to find appropriate treatment for their daughter.

Overcoming obstacles was not new to Bronwyn's family. With their daughter nearing the age of two, they watched as her vocabulary of over a hundred words virtually disappeared. She went from speaking in simple sentences to pointing and screaming, and she was often fixated on looking at her hands. "Those were the first signs that made us concerned about her development," says Bronwyn's father, "and they were major." One might expect that with such sudden changes, getting their daughter diagnosed wouldn't be difficult. As many parents concerned about their child's developmental delays soon find out, that's often not the case.

Bronwyn's parents first had to overcome the "wait and see" philosophy of many professionals.

When they expressed their concerns to the pediatrician, his response was, "She's verbal and a girl, so she can't have autism." Advice from other professionals included, "Put her in school for a change of environment" and "See what the teachers say." Professionals acted as though her parents were overly paranoid about their daughter's development when all they wanted to do was find out as early as possible why she was having difficulty and how they might go about helping.

Bronwyn's parents then had to overcome the long delay in seeing an expert who could diagnose developmental delays. "When we tried to get an appointment with an in-network developmental pediatrician, we were told the wait was six months to a year," says Bronwyn's mother, "We were willing to pay for an out-of-network developmental pediatrician, but none of them were accepting out of network appointments." In all, it took a year for Bronwyn's parents to get a diagnosis. "We went in, sat down, the doctor observed our daughter, and then confirmed what we already knew," said Bronwyn's mother, "she had autism."

With little direction from others, Bronwyn's parents sought to find the best help they could for their daughter. They talked with other parents, joined email lists such as the Me-List, and read books on autism and treatments for autism. Behavioral treatment "seemed to be the only thing that gave us much hope," says Bronwyn's mother. She was also impressed that the research didn't treat behavioral treatment as "the cure." "Everyone was peddling 'the cure.' It made sense that something as complex as autism wouldn't need just a pill." While the results of behavioral treatment were impressive, when one really looked at the research, it was also much more cautious and specific in talking about what it may and may not accomplish. Bronwyn's father adds, "the research showed documented progress that made sense."

After looking into a few different providers of behavioral treatment, often called ABA therapy (applied behavior analysis therapy), Bronwyn's parents choose the Lovaas Institute to oversee behavioral treatment for their daughter. "We went with Lovaas because it had a track record through the research," says Bronwyn's father. "Also, we felt we would have more control over in-home therapy." Because of their daughter's young age, they also thought therapy at home would allow for more real life teaching opportunities than could be found at a center. Finally, they liked the fact that parents were so involved in the therapy and included in the training.

Relieved to have found some answers on how to help a child with autism, Bronwyn's parents still had one major concern. Would the therapy work for their daughter?

Next month, follow Bronwyn's family as they experience the first 6-months of therapy utilizing the Lovaas Model of Applied Behavior Analysis.

The names of all children in this newsletter have been changed in respect for family confidentiality.

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