04-09-2005, 03:44 PM
http://www.parisbeacon.com/index.php?opt...ew&id=1018
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Diagnosis of autism leads mother to seek help for her son PDF Print E-mail
Written by Jenny Barkley
Thursday, 07 April 2005
When Pam and David Kelly’s son Michael was two-years-old, he was diagnosed with a developmental disorder. They were told he had autistic traits, but did not receive that specific diagnosis.By age three, the diagnosis was definitive - autism.
The parents began to recognize some unusual symptoms when their first born was only 18 months, but it was a long, difficult process to finally receive a diagnosis.
“It takes so long because all children develop at different rates,” said Pam Kelly, who asked that Michael’s story be told during April, National Autism Month.
She added, “Medical professionals don’t want to give a diagnosis too early and alarm parents unnecessarily, because all children develop in their own special way.”
But the Kellys did the right thing by starting early because research indicates that early diagnosis is associated with dramatically better outcomes for individuals with autism. The earlier a child is diagnosed, the earlier the child can begin benefiting from one of the many specialized intervention approaches.
According to the Autism Society of America, “Autism is a complex developmental disability that affects an individual in the areas of social interaction and communication. Autism is a spectrum disorder that affects each individual differently and to varying degrees of severity. As many as 1.5 million Americans - children and adults - are thought to have autism today.”
Typically, autism appears during the first three years of life.
The result of a neurological disorder that affects the functioning of the brain, autism impacts normal development of the brain. Children and adults with autism typically have difficulties in verbal and nonverbal communication, social interactions, and leisure or play activities. It affects 1 in 250 births, according to the Centers for Disease Control and Prevention in 2003.
Based on statistics from governmental agencies, autism is growing at a rate of 10 to 17 percent each year. At these rates, the ASA estimates that the prevalence of autism could reach 4 million Americans in the next decade.
The overall incidence of autism is consistent around the globe, but is four times more prevalent in boys than girls. Autism knows no racial, ethnic, or social boundaries, and family income, lifestyle, and educational levels do not affect the chance of autism's occurrence.
When Kellys’ son was 18 months, his mother noticed that he didn’t respond to his name or make eye contact. She now describes the disorder as she has come to know it:
“The neurological developmental disorder affects a child’s language ability and comprehension, social skills,” said Kelly. “These children tend to be loners, to play along side - but not with - other children.”
Beyond that, she said autistic children typically focus on one specific thing, such as wheels spinning. Rocking in a chair tends to calm them. They love swings. Those with severe autism tend to flap their hands, which is soothing to them when they get overwhelmed, Kelly said.
Kelly tells other parents to follow their instincts about their child’s behavior.
“Autistic children seem different,” she said. “They have their own unique way of making their way in the world.”
Kelly said autism was first discovered in 1945 by Leo Kanner, and at the same time, Hans Asperger classified Asperger’s Syndrome as a highly functioning level of autism.
Kelly highlighted some of the characteristics of autistic children: 1. They don’t orient or respond to their names. 2. They don’t look at faces or make eye contact as much as other children. 3. They don’t show objects to others or point at things. 4. They smile at others less. 5. They don’t try to imitate others as much. 6. They show less interest in other children. 7. They are content to play alongside, but off by themselves.
Kelly wants to share resources she has discovered with other parents who have a diagnoses or who are concerned. She recommends the following:
– Carol Murphy, Early Intervention Program with Child and Family Connections #19, 132 S. Water Street, Suite 604, Decatur, IL, 62523 (Kelly said Carol Murphy connected them with a child neurologist and child psychiatrists at Carle Clinic and Mental Health Services of Champaign County);
– Carla Oldham, Parents Resource Organization for Understanding of Disabilities and Developmental Delays (PROUDD), http://www.proudd.org;
– Nel Rose, Regional Coordinator, Illinois Autism/PDD, Training and Technical Assistance Project, 4707 Andrea Rd., Marion, IL 62959, Ph. 618-964-9348.
Research continues into the cause of autism.
According to the ASA, there is no known single cause for autism, but it is generally accepted that it is caused by abnormalities in brain structure or function. Brain scans show differences in the shape and structure of the brain in autistic versus non-autistic children.
Researchers are investigating a number of theories, including the link between heredity, genetics and medical problems. In many families, there appears to be a pattern of autism or related disabilities, further supporting a genetic basis to the disorder. While no one gene has been identified as causing autism, researchers are searching for irregular segments of genetic code that autistic children may have inherited. It also appears that some children are born with a susceptibility to autism, but researchers have not yet identified a single "trigger" that causes autism to develop.
Other researchers are investigating the possibility that under certain conditions, a cluster of unstable genes may interfere with brain development resulting in autism. Still other researchers are investigating problems during pregnancy or delivery as well as environmental factors such as viral infections, metabolic imbalances, and exposure to environmental chemicals.
The question of a relationship between vaccines and autism continues to be debated. In a 2001 investigation by the Institute of Medicine, a committee concluded that the "evidence favors rejection of a causal relationship.... between MMR (Measles, Mumps, Rubella) vaccines and Autistic Spectrum Disorders (ASD)." Other researchers agree the data does not support a link between the MMR and autism. More research is clearly needed, says the ASA.
Whatever the cause, experts say it is clear that children with autism and PDD (Pervasive Developmental Disorder) are born with the disorder or born with the potential to develop it. It is not caused by bad parenting. Autism is not a mental illness. Children with autism are not unruly kids who choose not to behave. Furthermore, no known psychological factors in the development of the child have been shown to cause autism.
Diagnosis of autism can be a lengthy and tedious process done through observation, the ADA says. There are no medical tests to confirm the disease. Although some other conditions may mimic autism or co-occur with it, accurate diagnosis and early identification can provide the basis for building an appropriate and effective educational and treatment program.
Whether a parent or the child's pediatrician is the first to suspect autism, your child will need to be referred to someone who specializes in diagnosing autism spectrum disorders, such as a developmental pediatrician, a psychiatrist or psychologist.
The Autism society recommends that parents: be informed, be prepared, be organized and communicate.
Often, the time immediately after the diagnosis is a difficult one for families, filled with confusion, anger and despair. These are normal feelings. But there is life after a diagnosis of autism. Life can be rewarding for a child with autism and all the people who have the privilege of knowing the child. While it isn't always easy, parents can learn to help a child find the world an interesting and loving place.
ASA offers an online autism course, and numerous other resources at http://www.autism-society.org.
For parents, Kelly recommends the East Central Illinois Autism Support Group which meets from 2 to 4 p.m. on the first Sunday of the month at Sarah Bush Health Care Center’s Education Center, with specialists Anne Hegley and Eric Benson.
Now that the diagnosis of Michael Kelly has been made, his parents have him involved in early intervention programs for birth to three, and are looking toward services through the school district for three to five year olds which address speech, occupational and physical therapies. They have applied to the Special Education preschools within local school districts.
Although some of her family members home school their children, Kelly plans to utilize public schools for Michael.
She wants to give public school teachers an opportunity to help him and to see how he responds. She also corresponds and shares ideas with people in chat groups on the Internet where “People with special needs can exchange, interact and share ideas, like a support group,” she said.
If insurance is an issue, Kelly advised that parents check into it before contracting doctors, because the treatments and therapies do get expensive. She said, however, that some obscure avenues exist for financial assistance.
Kelly said all sorts of people are affected or have a child affected with autism, classified as a mental disorder in the DSM (Diagnostic and Statistical Manual of Mental Disorders), which provides professional guidelines for diagnosis.
She also said seminars, guidelines, news and magazine articles, and other resources help parents learn and cope. Locally, help is available through speech language pathology students from Eastern Illinois University who work with afflicted children as they study for their degrees.
Various therapies exist, old and new, said Kelly. Current studies, she noted, focus on isolating a gene that might cause it. She said the current predominant theory is that autism is genetic.
“It’s like a puzzle, trying to put all of the pieces together,” Kelly said, “and every child’s puzzle is different.”
Kelly described autism as “the silent epidemic.”
“To look at a child, you wouldn’t know unless you interact with that child that he or she has autism,” said Kelly. “It’s not noticeable.”
“Sometimes,” she said, “autistics focus on one subject and excel, but can’t tie their own shoes or have trouble doing simple tasks.”
Actually, she noted, several very famous and successful people are autistic or have high level function autism called Asperger’s Syndrome.
Kelly recommends to other parents some of the books available in bookstores or through libraries, such as A True Story Emergency Labeled Autistic
by Temple Grandin and Margaret M. Scariano; Thinking in Pictures by T. Grandin; Overcoming Autism
by Lynn Kern Koegel, Ph.D. and Claire LaZebnik (Penguin Books); Illinois Starnet Resource Library Catalog available from http://www.wiu.edu/starnet, STARNET Regions I & III, WIU - 27 Horrabin Hall, Macomb, IL, 61455, Ph. 800-227-7537, ext. 293.
She advises parents to keep looking and be sure to find a doctor who will listen and not pacify by saying “Nothing is wrong.”
“It’s not something to be ashamed of,” said Kelly. “Don’t blame yourself for the condition - seek help for your child. You want to learn everything you can to help our child. Work with the school system for help.”
Written by Jenny Barkley
Thursday, 07 April 2005
When Pam and David Kelly’s son Michael was two-years-old, he was diagnosed with a developmental disorder. They were told he had autistic traits, but did not receive that specific diagnosis.By age three, the diagnosis was definitive - autism.
The parents began to recognize some unusual symptoms when their first born was only 18 months, but it was a long, difficult process to finally receive a diagnosis.
“It takes so long because all children develop at different rates,” said Pam Kelly, who asked that Michael’s story be told during April, National Autism Month.
She added, “Medical professionals don’t want to give a diagnosis too early and alarm parents unnecessarily, because all children develop in their own special way.”
But the Kellys did the right thing by starting early because research indicates that early diagnosis is associated with dramatically better outcomes for individuals with autism. The earlier a child is diagnosed, the earlier the child can begin benefiting from one of the many specialized intervention approaches.
According to the Autism Society of America, “Autism is a complex developmental disability that affects an individual in the areas of social interaction and communication. Autism is a spectrum disorder that affects each individual differently and to varying degrees of severity. As many as 1.5 million Americans - children and adults - are thought to have autism today.”
Typically, autism appears during the first three years of life.
The result of a neurological disorder that affects the functioning of the brain, autism impacts normal development of the brain. Children and adults with autism typically have difficulties in verbal and nonverbal communication, social interactions, and leisure or play activities. It affects 1 in 250 births, according to the Centers for Disease Control and Prevention in 2003.
Based on statistics from governmental agencies, autism is growing at a rate of 10 to 17 percent each year. At these rates, the ASA estimates that the prevalence of autism could reach 4 million Americans in the next decade.
The overall incidence of autism is consistent around the globe, but is four times more prevalent in boys than girls. Autism knows no racial, ethnic, or social boundaries, and family income, lifestyle, and educational levels do not affect the chance of autism's occurrence.
When Kellys’ son was 18 months, his mother noticed that he didn’t respond to his name or make eye contact. She now describes the disorder as she has come to know it:
“The neurological developmental disorder affects a child’s language ability and comprehension, social skills,” said Kelly. “These children tend to be loners, to play along side - but not with - other children.”
Beyond that, she said autistic children typically focus on one specific thing, such as wheels spinning. Rocking in a chair tends to calm them. They love swings. Those with severe autism tend to flap their hands, which is soothing to them when they get overwhelmed, Kelly said.
Kelly tells other parents to follow their instincts about their child’s behavior.
“Autistic children seem different,” she said. “They have their own unique way of making their way in the world.”
Kelly said autism was first discovered in 1945 by Leo Kanner, and at the same time, Hans Asperger classified Asperger’s Syndrome as a highly functioning level of autism.
Kelly highlighted some of the characteristics of autistic children: 1. They don’t orient or respond to their names. 2. They don’t look at faces or make eye contact as much as other children. 3. They don’t show objects to others or point at things. 4. They smile at others less. 5. They don’t try to imitate others as much. 6. They show less interest in other children. 7. They are content to play alongside, but off by themselves.
Kelly wants to share resources she has discovered with other parents who have a diagnoses or who are concerned. She recommends the following:
– Carol Murphy, Early Intervention Program with Child and Family Connections #19, 132 S. Water Street, Suite 604, Decatur, IL, 62523 (Kelly said Carol Murphy connected them with a child neurologist and child psychiatrists at Carle Clinic and Mental Health Services of Champaign County);
– Carla Oldham, Parents Resource Organization for Understanding of Disabilities and Developmental Delays (PROUDD), http://www.proudd.org;
– Nel Rose, Regional Coordinator, Illinois Autism/PDD, Training and Technical Assistance Project, 4707 Andrea Rd., Marion, IL 62959, Ph. 618-964-9348.
Research continues into the cause of autism.
According to the ASA, there is no known single cause for autism, but it is generally accepted that it is caused by abnormalities in brain structure or function. Brain scans show differences in the shape and structure of the brain in autistic versus non-autistic children.
Researchers are investigating a number of theories, including the link between heredity, genetics and medical problems. In many families, there appears to be a pattern of autism or related disabilities, further supporting a genetic basis to the disorder. While no one gene has been identified as causing autism, researchers are searching for irregular segments of genetic code that autistic children may have inherited. It also appears that some children are born with a susceptibility to autism, but researchers have not yet identified a single "trigger" that causes autism to develop.
Other researchers are investigating the possibility that under certain conditions, a cluster of unstable genes may interfere with brain development resulting in autism. Still other researchers are investigating problems during pregnancy or delivery as well as environmental factors such as viral infections, metabolic imbalances, and exposure to environmental chemicals.
The question of a relationship between vaccines and autism continues to be debated. In a 2001 investigation by the Institute of Medicine, a committee concluded that the "evidence favors rejection of a causal relationship.... between MMR (Measles, Mumps, Rubella) vaccines and Autistic Spectrum Disorders (ASD)." Other researchers agree the data does not support a link between the MMR and autism. More research is clearly needed, says the ASA.
Whatever the cause, experts say it is clear that children with autism and PDD (Pervasive Developmental Disorder) are born with the disorder or born with the potential to develop it. It is not caused by bad parenting. Autism is not a mental illness. Children with autism are not unruly kids who choose not to behave. Furthermore, no known psychological factors in the development of the child have been shown to cause autism.
Diagnosis of autism can be a lengthy and tedious process done through observation, the ADA says. There are no medical tests to confirm the disease. Although some other conditions may mimic autism or co-occur with it, accurate diagnosis and early identification can provide the basis for building an appropriate and effective educational and treatment program.
Whether a parent or the child's pediatrician is the first to suspect autism, your child will need to be referred to someone who specializes in diagnosing autism spectrum disorders, such as a developmental pediatrician, a psychiatrist or psychologist.
The Autism society recommends that parents: be informed, be prepared, be organized and communicate.
Often, the time immediately after the diagnosis is a difficult one for families, filled with confusion, anger and despair. These are normal feelings. But there is life after a diagnosis of autism. Life can be rewarding for a child with autism and all the people who have the privilege of knowing the child. While it isn't always easy, parents can learn to help a child find the world an interesting and loving place.
ASA offers an online autism course, and numerous other resources at http://www.autism-society.org.
For parents, Kelly recommends the East Central Illinois Autism Support Group which meets from 2 to 4 p.m. on the first Sunday of the month at Sarah Bush Health Care Center’s Education Center, with specialists Anne Hegley and Eric Benson.
Now that the diagnosis of Michael Kelly has been made, his parents have him involved in early intervention programs for birth to three, and are looking toward services through the school district for three to five year olds which address speech, occupational and physical therapies. They have applied to the Special Education preschools within local school districts.
Although some of her family members home school their children, Kelly plans to utilize public schools for Michael.
She wants to give public school teachers an opportunity to help him and to see how he responds. She also corresponds and shares ideas with people in chat groups on the Internet where “People with special needs can exchange, interact and share ideas, like a support group,” she said.
If insurance is an issue, Kelly advised that parents check into it before contracting doctors, because the treatments and therapies do get expensive. She said, however, that some obscure avenues exist for financial assistance.
Kelly said all sorts of people are affected or have a child affected with autism, classified as a mental disorder in the DSM (Diagnostic and Statistical Manual of Mental Disorders), which provides professional guidelines for diagnosis.
She also said seminars, guidelines, news and magazine articles, and other resources help parents learn and cope. Locally, help is available through speech language pathology students from Eastern Illinois University who work with afflicted children as they study for their degrees.
Various therapies exist, old and new, said Kelly. Current studies, she noted, focus on isolating a gene that might cause it. She said the current predominant theory is that autism is genetic.
“It’s like a puzzle, trying to put all of the pieces together,” Kelly said, “and every child’s puzzle is different.”
Kelly described autism as “the silent epidemic.”
“To look at a child, you wouldn’t know unless you interact with that child that he or she has autism,” said Kelly. “It’s not noticeable.”
“Sometimes,” she said, “autistics focus on one subject and excel, but can’t tie their own shoes or have trouble doing simple tasks.”
Actually, she noted, several very famous and successful people are autistic or have high level function autism called Asperger’s Syndrome.
Kelly recommends to other parents some of the books available in bookstores or through libraries, such as A True Story Emergency Labeled Autistic
by Temple Grandin and Margaret M. Scariano; Thinking in Pictures by T. Grandin; Overcoming Autism
by Lynn Kern Koegel, Ph.D. and Claire LaZebnik (Penguin Books); Illinois Starnet Resource Library Catalog available from http://www.wiu.edu/starnet, STARNET Regions I & III, WIU - 27 Horrabin Hall, Macomb, IL, 61455, Ph. 800-227-7537, ext. 293.
She advises parents to keep looking and be sure to find a doctor who will listen and not pacify by saying “Nothing is wrong.”
“It’s not something to be ashamed of,” said Kelly. “Don’t blame yourself for the condition - seek help for your child. You want to learn everything you can to help our child. Work with the school system for help.”