Differences in development key to diagnosing autism
From the start, Pam and Chad Geiger thought Alexander's behavior was different. Even early in his infancy he seemed to dislike it when his mother or father would touch his hands.
"He would pull them away," Pam recalled. Alexander wouldn't gaze into his parents' eyes. He didn't respond when his name was called. Pam remembers her own parents commenting: "The kid doesn't even know his name." By the age of 1, his vocabulary consisted of just two words.
Pam worried Alex had autism. But she wasn't sure — after all he was her first child. Maybe she expected too much.
Her pediatrician, friends and family members reassured her that Alexander's oddities were nothing to worry about: "He's a baby, he'll grow out of it."
"He's a boy, boys develop slower."
"It's probably true for a lot of babies," Pam said.
But it wasn't true for Alexander. When he was 18 months old, his entire four-word vocabulary disappeared all together.
That's when the Geigers were referred to a speech therapist with the thought that Alex was merely "speech delayed."
It would be another 1½ years before Alex officially received the autism diagnosis.
Eighteen valuable months of time lost. Pam considers Alex one of the lucky ones. His autism is "mild."
And his "speech delays" put him into Lincoln Public Schools' early childhood special education services program, where for the past 18 months he has received all of his treatment and made big gains in his speech, eye contact and behavioral skills.
But had the Geigers known earlier that Alex had autism they might have done things differently — done more — more intensive therapy, other strategies to retrain his brain to compensate for the neurological deficits, programs specifically designed to address autism.
Sadly, there is nothing atypical about the Geigers' story. The Centers for Disease Control is hoping to change all this. This month, the CDC kicked off its national awareness campaign: "Learn the Signs. Act Early."
The campaign targets parents, pediatricians and child-care providers to pay more attention to the missed milestones or backward steps some children may take in the course of otherwise normal development and recognize that these early signs could be red flags for autism and its host of autism spectrum disorders such as Asperger syndrome, Rett and PDD-NOS (pervasive developmental disorder-not otherwise specified).
Autism is incurable. It affects four times as many boys as girls. Its exact cause is unknown. And today, one out of every 166 children is affected to some degree by the neurological brain disorder — a 60 percent increase from 20 years ago.
Yet, the CDC states in its own literature: "From audience research we know that most parents are not aware of the developmental milestones their children should be reaching. And many health-care professionals are unaware of the importance of acting early if they suspect a developmental delay."
Although there are no scientifically proven preventions or cures for autism, "we do know early intervention can profoundly affect the outcome," said Nancy Wiseman, founder of First Signs, an educational advocacy group for autism.
The earlier children receive therapy, specialized education and intensive family interventions, the more likely they are to lead normal or close to normal lives when it comes to social, emotional and intellectual abilities, say experts throughout the field. The theory is that younger brains are more pliable and easier to retrain, which helps children compensate for and overcome the intellectual, emotional and social problems triggered by autism.
However, frequently children are not diagnosed with autism or an autism spectrum disorder until age 5 or later — even though parents often notice the signs and sudden changes in their children within the first nine to 18 months of life.
Parents report a baby that once cooed, smiled and stared into their eyes just stops; normal developmental milestones, such as babbling, playing peek-a-boo, turning to the person who calls their name and saying those words every parent longs to hear — "mama," "dada" — never come.
Play is odd, repetitive or incongruous with the activity. In Alexander's case it was little things, like lining things up, preferring to be alone rather than roll a ball back and forth to his parents, or carrying a telephone book and an old Flintstones' vitamin bottle much the same way other children cling to a blankie or teddy bear.
Some children are extraordinarily "hyper," "sensitive to light, sound, taste and touch" or out of control more than any average "terrible 2-year-old."
For years the experts — doctors, teachers, well-meaning experts, and even parents followed the same advice: "Be patient." "Just wait, it will happen." "Your child just marches to a different drummer."
Today, experts are beginning to see it differently.
Developmental problems are not something a child will "grow out of," the CDC said.
And the longer families wait for the diagnosis and treatment, the more the odds build against a child's successfully overcoming autism's challenges.
Doctors used to think it was impossible to diagnose autism in children before the age of 5, said Dr. Rebecca Landa, director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore.
"Only recently have they begun diagnosing kids under age 3," she said.
In fiscal year 2004, Congress appropriated $16 million to the CDC to support autism surveillance, research and a public awareness campaign.
Families need to know what to look for, Landa said.
So do doctors and health-care providers who miss the signs or are not adequately trained to recognize them, said Wiseman of First Signs.
"Most physicians have an increasingly limited time and ability to diagnose developmental disorders," Wiseman said. "They are not taught how to screen. They are not taught how to tell the difference between a typical and an atypical developmental delay."
The delay in diagnosis is not only devastating for affected families and children, but incredibly costly for schools, governments and the country.
"It's a problem that costs upwards of $100 billion," said Peter Bell of Cure Autism Now, a national advocacy group.
A CDC survey of children in Atlanta with autism found:
* 30 percent who met the definition of autism had received a different diagnosis
* 62 percent of children with autism also have another developmental disability
* 68 percent of children with autism have a cognitive impairment of some kind or another.
Yet, only 18 percent of children with autism who need early intervention receive it, Wiseman said.
"Autism is a crisis," said Paul Potito of the New Jersey-based autism advocacy organization COSAC.
But everyone from the CDC to advocacy groups, such as First Signs, COSAC and Cure Autism Now, believes it is treatable and some day soon will be curable.
Pam Geiger already sees dramatic differences in Alex. His vocabulary is larger. He maintains eye contact. And last May, for the very first time he said, "Mama."
"He's just a totally different child from when he first started," Pam Geiger said.
Still, he's behind his 3-year-old peers. And even at the rate he's progressing, Pam doubts he will catch up in time for kindergarten.
Perhaps it would be different … if only he was diagnosed earlier.
Reach Erin Andersen at 473-7217 or eandersen@journalstar.com.
Is your baby meeting these important milestones?
Does your baby at 4 months:
* Follow and react to bright colors, movement and objects?
* Turn toward sounds?
* Show interest in watching people's faces?
* Smile back when you smile?
Does your baby at 6 months:
* Relate to you with real joy?
* Smile often while playing with you?
* Coo or babble when happy?
* Cry when unhappy?
Does your baby at 9 months:
* Smile and laugh while looking at you?
* Exchange back-and-forth smiles, loving faces and other expressions with you?
* Exchange back-and-forth sounds with you?
* Exchange back-and-forth gestures with you, such as giving, taking and reaching?
Does your baby at 12 months:
* Use a few gestures, one after another, to get needs met, like giving, showing, reaching, waving and pointing?
* Play peek-a-boo, patty cake or other social games?
* Make sounds like "ma," "ba," "na," "da" and "ga"?
* Turn to the person speaking when his/her name is called?
Does your baby at 15 months:
* Exchange with you many back-and-forth smiles, sounds and gestures in a row?
* Use pointing or other "showing" gestures to draw attention to something of interest?
* Use different sounds to get needs met and draw attention to something of interest?
* Use and understand at least three words, such as "mama," "dada," "bottle" or "bye-bye"?
Does your baby at 18 months:
* Use lots of gestures with words to get needs met, like pointing or taking you by the hand and saying, "want juice"?
* Use at least four different consonants in babbling or words, such as m, n, p, b, t and d?
* Use and understand at least 10 words?
* Show that he or she knows the name of family people or body parts by pointing to or looking at them when they are named?
* Do simple pretend play, like feeding a doll or stuffed animal, and attracting your attention by looking up at you?
Does your baby at 24 months:
* Do pretend play with you with more than one action, such as feeding the doll and then putting the doll to sleep?
* Use and understand at least 50 words?
* Use at least two words together (without imitating or repeating) and in a way that makes sense, like "want juice"?
* Enjoy being next to children of the same age and show interest in playing with them, perhaps by giving a toy to another child?
* Look for family objects out of sight when asked?
Does your child at 36 months:
* Enjoy pretending to play different characters with you or talking for dolls or action figures?
* Enjoy playing with children of the same age, perhaps showing and telling another child about a favorite toy?
* Use thoughts and actions together in speech and in play in a way that makes sense, like "sleepy, go take nap," and "baby hungry, feed bottle"?
* Answer "what," "where" and "who" questions easily?
* Talk about interests and feelings about the past and the future?
Source: First Signs
Red flags
If your baby shows any of these signs, seek an immediate evaluation:
* No big smiles or other warm, joyful expressions by 6 months or thereafter.
* No back-and-forth sharing of sounds, smiles or other facial expressions by 9 months or thereafter.
* No babbling by 12 months.
* No back-and-forth gestures, such as pointing, showing, reaching or waving by 12 months.
* No words by 16 months.
* No two-word meaningful phrases (without imitating or repeating) by 24 months.
* ANY loss of speech or babbling or social skills at ANY age.
Source: First Signs
Learn more
* Centers for Disease Control and Prevention — www.cdc.gov/ncbddd/child.
* National Institute of Mental Health, Rockville, Md., (301) 443-4513; www.nimh.nih.gov.
* National Institute of Child Health and Human Development, Bethesda, Md., (301) 496-5133.
* National Institute of Neurological Disorders and Stroke, Bethesda, Md., (301) 496-5924; www.ninds.nih.gov.
* Kennedy Krieger Institute, Baltimore — research, treatment and education for autism and related disorders, www.kennedykrieger.org
Support organizations
* Autism Society of America, Bethesda, Md., (800) 3AUTISM; www.autism-society.org.
* Autism Research Institute, San Diego, Calif., (619) 281-7165; www.autismresearchinstitute.com.
* Cure Autism Now, a national foundation dedicated to the education and research into autism spectrum disorders, (888) 8AUTISM, or www.cureautismnow.org.
* First Signs — a national organization dedicated to helping parents whose children have autism. www.firstsigns.org.
"He would pull them away," Pam recalled. Alexander wouldn't gaze into his parents' eyes. He didn't respond when his name was called. Pam remembers her own parents commenting: "The kid doesn't even know his name." By the age of 1, his vocabulary consisted of just two words.
Pam worried Alex had autism. But she wasn't sure — after all he was her first child. Maybe she expected too much.
Her pediatrician, friends and family members reassured her that Alexander's oddities were nothing to worry about: "He's a baby, he'll grow out of it."
"He's a boy, boys develop slower."
"It's probably true for a lot of babies," Pam said.
But it wasn't true for Alexander. When he was 18 months old, his entire four-word vocabulary disappeared all together.
That's when the Geigers were referred to a speech therapist with the thought that Alex was merely "speech delayed."
It would be another 1½ years before Alex officially received the autism diagnosis.
Eighteen valuable months of time lost. Pam considers Alex one of the lucky ones. His autism is "mild."
And his "speech delays" put him into Lincoln Public Schools' early childhood special education services program, where for the past 18 months he has received all of his treatment and made big gains in his speech, eye contact and behavioral skills.
But had the Geigers known earlier that Alex had autism they might have done things differently — done more — more intensive therapy, other strategies to retrain his brain to compensate for the neurological deficits, programs specifically designed to address autism.
Sadly, there is nothing atypical about the Geigers' story. The Centers for Disease Control is hoping to change all this. This month, the CDC kicked off its national awareness campaign: "Learn the Signs. Act Early."
The campaign targets parents, pediatricians and child-care providers to pay more attention to the missed milestones or backward steps some children may take in the course of otherwise normal development and recognize that these early signs could be red flags for autism and its host of autism spectrum disorders such as Asperger syndrome, Rett and PDD-NOS (pervasive developmental disorder-not otherwise specified).
Autism is incurable. It affects four times as many boys as girls. Its exact cause is unknown. And today, one out of every 166 children is affected to some degree by the neurological brain disorder — a 60 percent increase from 20 years ago.
Yet, the CDC states in its own literature: "From audience research we know that most parents are not aware of the developmental milestones their children should be reaching. And many health-care professionals are unaware of the importance of acting early if they suspect a developmental delay."
Although there are no scientifically proven preventions or cures for autism, "we do know early intervention can profoundly affect the outcome," said Nancy Wiseman, founder of First Signs, an educational advocacy group for autism.
The earlier children receive therapy, specialized education and intensive family interventions, the more likely they are to lead normal or close to normal lives when it comes to social, emotional and intellectual abilities, say experts throughout the field. The theory is that younger brains are more pliable and easier to retrain, which helps children compensate for and overcome the intellectual, emotional and social problems triggered by autism.
However, frequently children are not diagnosed with autism or an autism spectrum disorder until age 5 or later — even though parents often notice the signs and sudden changes in their children within the first nine to 18 months of life.
Parents report a baby that once cooed, smiled and stared into their eyes just stops; normal developmental milestones, such as babbling, playing peek-a-boo, turning to the person who calls their name and saying those words every parent longs to hear — "mama," "dada" — never come.
Play is odd, repetitive or incongruous with the activity. In Alexander's case it was little things, like lining things up, preferring to be alone rather than roll a ball back and forth to his parents, or carrying a telephone book and an old Flintstones' vitamin bottle much the same way other children cling to a blankie or teddy bear.
Some children are extraordinarily "hyper," "sensitive to light, sound, taste and touch" or out of control more than any average "terrible 2-year-old."
For years the experts — doctors, teachers, well-meaning experts, and even parents followed the same advice: "Be patient." "Just wait, it will happen." "Your child just marches to a different drummer."
Today, experts are beginning to see it differently.
Developmental problems are not something a child will "grow out of," the CDC said.
And the longer families wait for the diagnosis and treatment, the more the odds build against a child's successfully overcoming autism's challenges.
Doctors used to think it was impossible to diagnose autism in children before the age of 5, said Dr. Rebecca Landa, director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore.
"Only recently have they begun diagnosing kids under age 3," she said.
In fiscal year 2004, Congress appropriated $16 million to the CDC to support autism surveillance, research and a public awareness campaign.
Families need to know what to look for, Landa said.
So do doctors and health-care providers who miss the signs or are not adequately trained to recognize them, said Wiseman of First Signs.
"Most physicians have an increasingly limited time and ability to diagnose developmental disorders," Wiseman said. "They are not taught how to screen. They are not taught how to tell the difference between a typical and an atypical developmental delay."
The delay in diagnosis is not only devastating for affected families and children, but incredibly costly for schools, governments and the country.
"It's a problem that costs upwards of $100 billion," said Peter Bell of Cure Autism Now, a national advocacy group.
A CDC survey of children in Atlanta with autism found:
* 30 percent who met the definition of autism had received a different diagnosis
* 62 percent of children with autism also have another developmental disability
* 68 percent of children with autism have a cognitive impairment of some kind or another.
Yet, only 18 percent of children with autism who need early intervention receive it, Wiseman said.
"Autism is a crisis," said Paul Potito of the New Jersey-based autism advocacy organization COSAC.
But everyone from the CDC to advocacy groups, such as First Signs, COSAC and Cure Autism Now, believes it is treatable and some day soon will be curable.
Pam Geiger already sees dramatic differences in Alex. His vocabulary is larger. He maintains eye contact. And last May, for the very first time he said, "Mama."
"He's just a totally different child from when he first started," Pam Geiger said.
Still, he's behind his 3-year-old peers. And even at the rate he's progressing, Pam doubts he will catch up in time for kindergarten.
Perhaps it would be different … if only he was diagnosed earlier.
Reach Erin Andersen at 473-7217 or eandersen@journalstar.com.
Is your baby meeting these important milestones?
Does your baby at 4 months:
* Follow and react to bright colors, movement and objects?
* Turn toward sounds?
* Show interest in watching people's faces?
* Smile back when you smile?
Does your baby at 6 months:
* Relate to you with real joy?
* Smile often while playing with you?
* Coo or babble when happy?
* Cry when unhappy?
Does your baby at 9 months:
* Smile and laugh while looking at you?
* Exchange back-and-forth smiles, loving faces and other expressions with you?
* Exchange back-and-forth sounds with you?
* Exchange back-and-forth gestures with you, such as giving, taking and reaching?
Does your baby at 12 months:
* Use a few gestures, one after another, to get needs met, like giving, showing, reaching, waving and pointing?
* Play peek-a-boo, patty cake or other social games?
* Make sounds like "ma," "ba," "na," "da" and "ga"?
* Turn to the person speaking when his/her name is called?
Does your baby at 15 months:
* Exchange with you many back-and-forth smiles, sounds and gestures in a row?
* Use pointing or other "showing" gestures to draw attention to something of interest?
* Use different sounds to get needs met and draw attention to something of interest?
* Use and understand at least three words, such as "mama," "dada," "bottle" or "bye-bye"?
Does your baby at 18 months:
* Use lots of gestures with words to get needs met, like pointing or taking you by the hand and saying, "want juice"?
* Use at least four different consonants in babbling or words, such as m, n, p, b, t and d?
* Use and understand at least 10 words?
* Show that he or she knows the name of family people or body parts by pointing to or looking at them when they are named?
* Do simple pretend play, like feeding a doll or stuffed animal, and attracting your attention by looking up at you?
Does your baby at 24 months:
* Do pretend play with you with more than one action, such as feeding the doll and then putting the doll to sleep?
* Use and understand at least 50 words?
* Use at least two words together (without imitating or repeating) and in a way that makes sense, like "want juice"?
* Enjoy being next to children of the same age and show interest in playing with them, perhaps by giving a toy to another child?
* Look for family objects out of sight when asked?
Does your child at 36 months:
* Enjoy pretending to play different characters with you or talking for dolls or action figures?
* Enjoy playing with children of the same age, perhaps showing and telling another child about a favorite toy?
* Use thoughts and actions together in speech and in play in a way that makes sense, like "sleepy, go take nap," and "baby hungry, feed bottle"?
* Answer "what," "where" and "who" questions easily?
* Talk about interests and feelings about the past and the future?
Source: First Signs
Red flags
If your baby shows any of these signs, seek an immediate evaluation:
* No big smiles or other warm, joyful expressions by 6 months or thereafter.
* No back-and-forth sharing of sounds, smiles or other facial expressions by 9 months or thereafter.
* No babbling by 12 months.
* No back-and-forth gestures, such as pointing, showing, reaching or waving by 12 months.
* No words by 16 months.
* No two-word meaningful phrases (without imitating or repeating) by 24 months.
* ANY loss of speech or babbling or social skills at ANY age.
Source: First Signs
Learn more
* Centers for Disease Control and Prevention — www.cdc.gov/ncbddd/child.
* National Institute of Mental Health, Rockville, Md., (301) 443-4513; www.nimh.nih.gov.
* National Institute of Child Health and Human Development, Bethesda, Md., (301) 496-5133.
* National Institute of Neurological Disorders and Stroke, Bethesda, Md., (301) 496-5924; www.ninds.nih.gov.
* Kennedy Krieger Institute, Baltimore — research, treatment and education for autism and related disorders, www.kennedykrieger.org
Support organizations
* Autism Society of America, Bethesda, Md., (800) 3AUTISM; www.autism-society.org.
* Autism Research Institute, San Diego, Calif., (619) 281-7165; www.autismresearchinstitute.com.
* Cure Autism Now, a national foundation dedicated to the education and research into autism spectrum disorders, (888) 8AUTISM, or www.cureautismnow.org.
* First Signs — a national organization dedicated to helping parents whose children have autism. www.firstsigns.org.
Copyright © 2002-2008 Lincoln Journal Star. All rights reserved.