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Autism: The word no parent wants to hear
Published November 29, 2009
EDITOR'S NOTE: First in a three-day series on autism, diagnosis and treatment.
When she was an infant in the hospital nursery, people could tell Alisha Cannan was different than the other babies.
Nurses told her parents she was the only child who didn’t cry when a nurse left the room.
Alisha was 2 years old when doctors diagnosed her with an autism spectrum disorder, and for her parents, the diagnosis couldn’t have come soon enough.
That didn’t make it easy to hear, though.
“Your world crashes down,” said Jennifer Cannan, Alisha’s mother. “You feel like you’ve lost all hope.”
Learning your child has autism begins a mourning process that continues for most of your life, said John Cannan, Alisha’s father.
“You mourn it almost like a death,” he said. “You mourn the child you could have had.”
'SOMETHING VERY SPECIAL'
Alisha, now 8, is a happy girl, excited to meet new people and quickly affectionate toward them. She still is delayed in school because of developmental issues that make it hard for her to focus, Jennifer Cannan said. But overall, Alisha is a smart child who is eager to please.
But she always was different and her parents knew it.
Alisha had to have something in her hand, yet had no attachment with anything or anyone. She would find a way to get something she wanted instead of getting her parents’ help, Jennifer Cannan said.
One of the first hints there was something going on: as a baby, Alisha rarely cried.
Alisha never cried when her diaper was full or when she was hungry, she said. Friends and family members would comment on what a good baby Alisha was.
“She wasn’t a good baby,” Cannan said. “She was a child with autism.”
Though the pain is great for the couple, their love for Alisha is even greater.
“There’s something very special about her,” Jennifer
NO TWO ARE ALIKE
There are probably hundreds of children with autism living in Brazoria County, said Jennifer Kennon, representative for Brazoria County Association for Citizens with Handicaps. Though the number of children diagnosed with autism certainly has grown over the years, it is unclear if that growth is because of more cases or because the disorder is becoming more recognized, she said.
There are five developmental disorders that fall under the umbrella of autism spectrum disorders, according to Autism Speaks, an organization dedicated to raising funds for autism research.
The five are autism, Asperger’s syndrome, Rett syndrome, pervasive developmental disorder not otherwise specified and childhood disintegrative disorder. These disorders are characterized by impaired communication skills, impaired social abilities and repetitive behavior.
However, as almost everyone who is associated with a child who has autism would say, if you’ve met a child with autism, you have met one child with autism. No two cases are alike.
Ryan Alpeter, 9, has developmental issues that have resulted in him struggling in social situations, and he also cannot feel pain. Sammie Martinez, 3, does not talk and has a hard time when his schedule changes.
All people on the spectrum do have one thing in common, though. There is no proven way to prevent the disorder and no universally accepted cure.
What sticks out most about Alisha are her quick progress and her good communication skills. She doesn’t fit the profile of what most Americans would call autistic.
Even strangers can tell that Alisha is caring, extremely curious and fun loving.
ALISHA'S SYMPTOMS
As a baby, Alisha could not be held facing her mother. Instead, she would cry until Jennifer Cannan turned her facing away, Cannan said.
As she grew older, Alisha didn’t speak, instead repeating words without understanding them, Cannan said.
“She had no separation anxiety at all,” John Cannan said. Just like her toys, once Alisha's parents were out of sight, they also were out of mind.
By the time Alisha was a year old, Jennifer Cannan no longer could continue to wait and see if Alisha would grow out of her developmental issues. Cannan started early treatment without an autism diagnosis.
“Waiting just wasn’t an option,” she said. If they waited longer, her development would have been more and more delayed, she said.
Cannan soon was able to take Alisha to the Meyer Center for Developmental Pediatrics of Texas Children’s Hospital, where she was diagnosed with an autism spectrum disorder: pervasive developmental disorder not otherwise specified. That meant she fit on the autism spectrum, but not as a classic case of any of the disorders.
After almost three years of trying to fix the unnamed problem, they had a name for the disorder that was disrupting their child’s life. But the diagnosis was a devastating one, and the disorder is one Alisha never will outgrow.
Even before Alisha’s diagnosis, the family began therapy with the help of BACH Early Childhood Intervention. The Cannans believe this therapy is what has created such progress in Alisha today.
Therapy will not hurt a child who does not end up having autism, Jennifer Cannan said.
OTHER SYMPTOMS
Children have different stories of how they are diagnosed. Ryan of Lake Jackson was diagnosed with Asperger’s syndrome at age 6, while Sammie of Pearland received therapy at age 2, without an official diagnosis.
For both sets of parents, wondering what could be wrong with their son began early in the child’s life.
Ryan always was at the very end of where he should be developmentally, said his mother, Lisa Alpeter. Sammie wasn’t in step with the developmental pattern Julie Martinez’s older children had followed.
Both children began therapy early, before the diagnosis of autism.
Ryan is what those familiar with the spectrum call high-functioning. To the unsuspecting observer, Ryan appears to be just like most other children. But a few minutes with him in his home classroom or at Sunday school tell a different story.
Ryan still struggles to read, he is clumsy and often off balance.
“He doesn’t know where his body is in space,” Alpeter said.
Sammie’s greatest problems are his communication and social skills, said Courtney Ward, Sammie’s therapist. Sammie has no problems with his fine motor skills.
“He doesn’t play with toys like other kids,” Martinez said. “He doesn’t play with other kids.”
Ryan also struggles with things that come naturally to other children, like picking up social cues.
He also does not like change and flaps his arms when excited or happy, Alpeter said. They are very common characteristics for people on the autism spectrum.
Sammie, Ryan and Alisha all received early intervention, for which their parents credit most of their progress. To learn more about Alisha, Ryan and Sammie’s therapy, read Monday’s story in The Facts.
Katlynn Lanham is a reporter for The Facts. Contact her at 979-237-0150.
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DIAGNOSIS
TODAY: Five developmental disorders fall under the umbrella of autism: autism, Asperger’s syndrome, Rett syndrome, pervasive developmental disorder not otherwise specified and childhood disintegrative disorder.
TREATMENT
MONDAY: Occupational therapy works on the child’s motor skills, visual perception, self-help skills and many other skills. Therapy is all about helping children learn to function in different environments.
FAMILIES
TUESDAY: Perhaps most frustrating to parents of children with autism is the lack of knowledge: Not knowing how to care for a child who cannot communicate his or her needs and not knowing why the child has autism.
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Autism: The word no parent wants to hear
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