Finding diagnosis for an ill child
Women have happy, healthy babies every day. But what if there is a problem with that child and no one can put a name to it or any kind of a handle on it?
That's just what Barbara LaSalle faced in the early 1970s after her son, Ben, was born in 1969. As he grew he developed in a way that seemed so different from most children. In some ways he seemed almost a genius but in other ways his development was stunted.
Barbara's and Ben's stories are told in a book called “Finding Ben: A Mother's Journey through the Maze of Asperger's.”
He learned to read at 18 months and became a voracious reader but with self-imposed limitations.
He read the same books over and over again. He knew them frontward and backward.
He loved to visit the same places and do the same things over and over again. He would visit the same museum to see the same things week after week.
“He had a narrow range of interests but knew all the small details about the subjects and could speak about them at length,” LaSalle said.
Change upset him.
When he learned to walk he never advanced beyond the basic steps. He would take stairs one at a time and always in the same manner.
It was later discovered that his eyes did not work together and he couldn't do many things the way most people do them because of his vision.
The biggest problem at the early age was his lack of social skills.
He would not make eye contact with people he met and talked incessantly in a monotone about whatever he had on his mind.
He didn't know how to involve other people in his conversations and could not listen to someone else.
“In many ways he was like the absent-minded professor,” LaSalle said. “He became emotionally alienated and would isolate himself and he was happier being by himself in his world than trying to deal with the world that the rest of us lived in.”
Playdates usually ended with his guest playing with the toys and Ben, in his room, reading.
He had trouble separating from his mother when he started preschool. It took six weeks for him to go without his mother staying. In kindergarten it took five weeks.
To the outside world, he appeared, at times, to be a genius because of his vast knowledge from his reading skill. To his mother, his lack of coordination and social skills was troubling but she was puzzled about where to find an answer.
“That really became frustrating to me,” she added. “No one could put a reasonable diagnosis on Ben's condition. He didn't fit the guidelines for anything and he spent years in a variety of therapies to try to improve his lot in life.
“The problem was, each tiny step took weeks and months to achieve and he wasn't really improving. As he got older, doctors would try to diagnosis him with one kind of mental illness or another but that wasn't right either.”
It would take years before Ben's illness was diagnosed because his symptoms and problems did not fit the exact profile for anything. He could not be categorized exactly and it was frustrating to both Barbara and Ben. It became an obsession with Barbara.
It wasn't until a doctor finally diagnosed Autism, a diagnosis that was dismissed earlier because he didn't fit the profile. But the doctor with the diagnosis said Ben's was not the usual form of autism.
“Ben may have been autistic, but he clearly didn't fit the prototype. His language wasn't absent or delayed; it was precocious. He may have preferred information to people, but he could relate to others when he had to, and sometimes he even wanted to,” LaSalle says in her book.
It would take a few more years before the exact syndrome would be labeled as Asperger's Syndrome.
Ben could not pick up the cues that serve as the language of social interaction so he came across as odd. That's one of the symptoms of what became known as Asperger's Syndrome.
“They referred to it for awhile as a higher functioning or mild form of autism and that is not quite right,” she said. “The syndrome falls under the label of autism but is really it's own illness.
“It really wasn't established until 1995 but now those who suffer with it should be helped much more easily than Ben was.”
According to a website about the disease, Asperger's Syndrome is a development disorder “characterized by severe and sustained impairment in social interaction, development of repetitive patterns of behavior and interests.” It is not easily recognizable and is often misdiagnosed which can lead to a delay in treatment. Treatment involves drug therapy and natural remedies and vary to a great degree with the individual patient. No single medication or remedy works for everyone and there is no cure.
“People who suffer from this can live normal lives today if they are properly diagnosed,” LaSalle said. “Now that medical science knows what it is, patients can be treated and won't have to go through the problems that Ben had getting diagnosed and treated and just living a normal life.”
LaSalle travels the country lecturing about her time dealing with Asperger's Syndrome and the problems associated with her struggle. Ben is trying to make a life for himself getting a college degree.
The book is a very easy read and gives readers some real insight into what sufferers once faced. She hopes the book will help people become more aware follow her lead to seek second opinions and more when facing some health isssues.