At the Kennedy Krieger Institute, our sole mission is to understand, unlock, and overcome the problems and injuries that affect a child’s developing brain and nervous system. For nearly 70 years, our willingness to try the untried and encourage the impossible has made Kennedy Krieger a place of hope for more than 13,000 children and families each year. To volunteer, receive our publications, learn about upcoming events, explore career opportunities, or make a gift visit www.helpkids.kennedykrieger.org.
Dear Friends,
No one needs to tell the doctors, researchers or therapists at the Kennedy Krieger Institute that autism figures are growing at an alarming rate – that current statistics predict one out of every 150 children is destined to develop the disorder. We are well aware of the toll that autism takes on a family’s life and we are constantly looking for answers to all the unanswered questions surrounding the disorder.
Kennedy Krieger is known for its dedication to helping children and adolescents with disorders of the brain and spinal cord achieve their potential and participate as fully as possible in family, school, and community life. In the last decade, we have begun to focus more and more resources on the research and treatment of autism. In the last year alone, we have taken some important steps toward unraveling the mystery of autism: In partnership with Autism Speaks, we launched the Interactive Autism Network, IAN, the first nationwide, online initiative that is designed to match families with researchers to accelerate autism research in the hopes that it will lead to new discoveries about causes, diagnosis, treatments, and a possible cure. Kennedy Krieger became one of 15 centers that are a part of the Autism Treatment Network, a group of hospitals and medical centers nationwide that are helping to improve the quality and accessibility of health care for children with autism spectrum disorders. The Institute published findings of a study that confirmed that the behavior of children with autism spectrum disorders can actually improve with fever. Understanding this “fever effect” in children with autism spectrum disorders may provide valuable insight into the neurological basis of the disorder.
• • •
We are pleased that the Institute’s research and treatment services have been highlighted in this booklet, and we’d like to thank the Afro American Newspaper for creating it. This booklet provides an important opportunity for the African American community to learn more about autism and the challenge that families affected by the disorder face. Sincerely,
Gary W. Goldstein, MD President and CEO A Publication of the Afro-American Newspapers
Autism: A Different Way of Doing Things
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Autism
A Different Way of Doing Things A publication of the Afro-American Newspapers The Baltimore Afro-American Newspaper 2519 N. Charles Street Baltimore, MD 21218 (410) 554-8200 The Washington Afro-American Newspaper 1917 Benning Road NE Washington, DC 20002 (202) 332-0080
John J. Oliver Jr. Chairman/Publisher
Director of Advertising Susan Warshaw Sales Michaela Blanchard Robert Blount Marquis Goodwin Jessie Murphy Annie Russ Editor Tiffany Ginyard Proofreaders Tiffany Ginyard Kristin Gray Electronic Editor Maura Sopher Writer Zephyr Crenshaw Graphic Designer Denise Dorsey
Table of Contents
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12 A Quick Look At Autism
Early Detection
12 Early Intervention
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The Day Family
Being A Voice For Your Child
Presenting The Facts
The IAN Project
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Wanting Research To Go Farther
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4 Autism: A Different Way of Doing Things
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The Cosby Family
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Resources For Families
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Fundraising - Doing Your Part
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Dear Friends,
At Verizon, one of our philanthropic goals is to increase safety, advance healthcare and improve quality of life for individuals and families in every community. To us that means having access to the health information and services you need when you need them. That’s why I’m so proud to be in Baltimore, where we have access to some of the country’s top medical experts and facilities. With startling statistics showing that autism now affects an estimated one in 150 children, we are indeed lucky to have the renowned Kennedy Krieger Institute in our own backyard.
Kennedy Krieger is recognized across the nation for its dedication and expertise in helping children with disorders and injuries of the brain and spinal cord achieve their potential. For the past decade, autism has increasingly become a large focus of the Institute’s work. Researchers at Kennedy Krieger Institute’s Center for Autism and Related Disorders are working to detect the signs and symptoms of autism at the earliest age possible. With an early diagnosis by the age of three or younger, families can access early intervention services that offer meaningful hope for their child’s future. In years to come, clinics across the country will benefit from the Institute’s studies – but living in this area, we have access to their latest findings today.
Autism strikes families regardless of race, gender or socioeconomic status with disabling symptoms that affect a child’s ability to communicate, understand language, play and relate to others. I join my friends at Kennedy Krieger to encourage the African American community to get involved in research and to seek early diagnosis and intervention if you suspect a problem. Let us ensure that African American children are well-represented in the investigation of autism and benefit from our proximity to a national leader in autism. Even if you are not personally affected by autism, you can help by joining the nationwide effort to raise awareness and funds against this devastating disorder. Organizations like Kennedy Krieger rely on private financial support to increase the number of children they can serve and accelerate the pace of research.
With your help the Kennedy Krieger Institute will continue to unlock the potential of children with autism, enrich their experiences in life, empower parents, and benefit the well-being of families. Sincerely,
William R. Roberts Board Member The Kennedy Krieger Institute and Regional President Verizon Maryland and Washington, DC
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Autism Affects Us All…
One of the greatest fears any new parent experiences is the feeling of helplessness when an infant becomes ill and needs medical attention. Fear turns to panic when waiting for word from the doctor, but sighs of relief follow when you learn the sickness can be remedied. For parents and families of children diagnosed with ASD (Autism Spectrum Disorders), there are no such reassurances; rather, it is the beginning of a long arduous process of uncertainty, lack of information, resources and anxiety about this disorder. Thanks to Kennedy Krieger Institute professionals and partners trailblazing work and commitment of resources, our community has a source to turn to for much needed knowledge, assistance with identifying resources and recommended plans of action. There is so much we don’t understand, but early detection, intervention and integrated community support and learning strategies are critical to peeling back the complex issues surrounding autism. While ASD does not discriminate, we are learning that there are disparities in how soon it is correctly identified and the availability of resources to assist African-American families. As a Kennedy Krieger board member I, along with the AFRO, am committed to helping our community become knowledgeable and take a proactive position as recommended by all quarters including the Child-Autism-Parent-Café.com who emphasize, “…Parents, and in particular African American parents should be persistent in getting their health care provider to listen and to act on your concerns.” I implore you to read about early intervention success stories and how important school involvement and area model programs offer promise for a better prognosis in the future. Knowledge and gathering critical data are key elements, and the Interactive Autism Network (IAN) Project is an online link (www.ianproject.org) for parents and professionals. Please read about the progress of this first national autism registry that has become the largest collection of data on autism in the world. In this era of volunteerism, all of us can help to make a difference by participating in special events designed to provide awareness and raise funds to support programs and activities. There is always a need for volunteers to help, so please review the printed schedule so you can participate and regularly go to their Web site kennedykrieger.org for updates. We are proud to publish this special supplement as an educational tool highlighting the effects and social implications of autism––our country's fastest growing developmental disorder. Let’s all do our part.
John J. Oliver Jr. Chairman/Publisher
6 Autism: A Different Way of Doing Things
A Publication of the Afro-American Newspapers
A quick look at aut ism
By Zephyr Crenshaw
Autism. It’s a scary word that makes people think about concepts society finds frightening like being different, not being understood or being disabled. Some of what makes autism scary is what isn’t known, like what causes it and why its prevalence in the United States seems to be increasing. Autism, according to Dr. Rebecca Landa, director of Kennedy Krieger Institute’s Center for Autism and Related Disorders, is a disorder of brain development that occurs during the first three years of life, impairs social and communication development and comes along with unusual behaviors. “When you look at group data on the whole, their [children with autism] brains grow faster earlier than typically developing children,” Dr. Landa said. “How the brain organizes itself – how it connects itself seems to be part of the problem.” Dr. Landa stressed that having only one of the symptomatic indicators – language delay, trouble with eye contact, play lacking imagination, lack of social contact – does not mean a child has autism. “It’s more than one thing that’s not OK,” she said. Dr. Paul Law, director of Kennedy Krieger’s IAN Project, the first national autism registry, agrees. “Communication, socialization and repetitive behaviors or interests are the core areas where there has to be a deficit for a diagnosis of autism. The disorder of autism calls for impairments in all three.” The Diagnostic and Statistical Manual of Mental Disorders Fourth Edition (DSM IV) describes a variety of severity levels for autism spectrum disorders (ASD) and different configurations of communication, socialization A Publication of the Afro-American Newspapers
[that their child might have autism], they should talk to someone about it.” Good resources for parents are pediatricians, teachers and your local Infant and Toddler Program, which provides service for free. In
and behavior impairment. According to Dr. Law, the ASD designation includes autism, Asperger Syndrome and Pervasive Developmental Disorder-Not Otherwise Specified. “The classification for autism is currently being refined,” he said. “There can be gray areas in some cases where it is difficult to distinguish between autism, Asperger Syndrome and PDD-NOS. Most autism experts believe there are a number of different disorders that we now collectively refer to as ‘autism’ because they share certain common behavioral features, and our current diagnostic tools do not allow us to separate them into distinctly different categores.” The DSM IV defines each of these specific labels for disorders on the autism spectrum: Autistic Disorder Pervasive Developmental Disorder, Not Otherwise Specified is the diagnosis when a child has severe impairment in communication, socialization and behavior, but does not meet the specific criteria for another PDD category. Asperger Disorder, or Asperger Syndrome, has significant social and behavioral impairment, but no significant cognitive or language delays.
“Once a diagnosis is made, inter vention related to language, developmental skills and social interaction are critical to generating the mental pathways needed to function in society." ”
So what does it mean when a child has autism?
Maryland, this program operates from the Maryland State Department of Education and in most counties, the program is housed with either the health department or the public school system. These people will help parents understand any developmental concerns they have and assist in connecting families with the proper resources for testing and intervention.
What causes autism?
According to Dr. Landa, is does not mean there is no hope. Because there is a spectrum of severity in autism, she said, intervention is crucial. “Most children with an autism spectrum disorder are going to require intensive intervention to get better. Some are going to get better with less intervention. Intervention is really, really important. So, if parents are concerned
At present, no definitive cause for autism has been identified, although studies have led experts to believe there is a genetic component. “The chief cause for autism is genetics,” said. Dr. Landa. “And we don’t know what the specific genes are.” She said there have been several studies showing more of a prevalence of autism in twins than non-twins and more prevalence in families that already have a child diagnosed with autism. But the recent increase in autism diagnosis to 1 in 150 children has led researchers to look at environContinued on Page 19
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Early detection; crucial for successful intervention
By Zephyr Crenshaw
Along with crying, lots of diapers and regular feedings, infants and toddlers have lots of visits to the pediatrician. While these visits usually have a specific purpose, each time a child comes in the pediatrician is checking to see if he or she has reached the appropriate age-related developmental milestones. These are the first indicators that a child’s brain and nervous system are developing normally. Parents should be aware of and checking for these milestones too, according to Dr. Rebecca Landa, an international expert in autism spectrum disorders, early detection and diagnosis and director of Kennedy Krieger Institute’s Center for Autism and Related Disorders. The Centers for Disease Control has published some developmental guidelines parents should be familiar with. According to the CDC, by 8 months, infants should turn their head when they hear their name, return a smile, make sounds in response to sounds and interact during games like peek-a-boo. By their first birthday, they should be imitating actions during play, responding when someone tells them “no” or “stop,” making simple name sounds like “ma” and “da” (for “mama” and “dada”) and making simple gestures like waving. At 18 months, children should look when prompted in the direction where a person is pointing, should point at objects, do pretend play like using a toy phone correctly and, unprompted, speak single words. By their second birthday, children should be interested in other children, be able to follow simple instructions, point to an object when asked and use simple phrases of a few words. If any delay in meeting these milestones is noticed, it is important to follow-up and make sure the proper action is Dr. Rebecca Landa
8 Autism: A Different Way of Doing Things
taken, she said. While a delay in these milestones does not necessarily mean that a child has autism, it is important to know as much as possible, as soon as possible about whether a child is developing as expected. This is because children can be provided with early intervention if development is not going as expected. The earlier that appropriate intervention begins, the more likelihood there is for a positive change in the child. “I can’t stress enough how important early intervention is,” she said. “Good education, good intervention really helps most children get better.” Often parents will hear things like “boys mature slower than girls” or “the child will talk when she gets ready” and are advised to wait and see before taking action when a child is late reaching a milestone. Dr. Landa recommends following up sooner rather than later. “If the parents are really concerned, they should talk to someone about it,” said Dr. Landa, suggesting starting with the pediatrician as well as a local Infant and Toddler program, which provides free services. “The older a child gets and the symptoms persist, the less likelihood that you are going to make as rapid a change [with intervention].” Yolanda Day, whose two oldest sons have been diagnosed with autism, has first hand knowledge of how early detection and intervention make a difference. Her family is participating in Dr. Landa’s early detection study at Kennedy Krieger. The early detection study looks at autistic children and their infant siblings and at children at lower-risk for developing autism. Researchers conduct tests with the children at regular milestone intervals from age 6 months to 8 years old. Along with tests to determine whether or not a child has reached developmental milestones, parents are asked about the child’s behavior and habits. “Before the initial appointment,” said Mrs. Day, “there were five packets of questions we had to complete asking about what the children do, say, are eating and how they react in situations.” She said this information had to be completed before the first visit. She said during the assessments, the children are allowed to get comfortable in their environment and tested in a variety of ways, through play and interaction. She said they also test fine and
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Early, intense intervention gets results
Describing autism as a disorder caused by “something in the way the brain organizes itself,” Dr. Rebecca Landa, director of Kennedy Krieger Institute’s Center for Autism and Related Disorders, explains that right now, researchers do not know exactly what that organization is or what causes it. “We have a lot of work to do to figure this out,” she said. “We are in the early days of this research.” While there is evidence to support a genetic root for the disorder – more prevalent in twins than non-twins, more prevalent among siblings and family members – with environmental interactions that have not been identified, the bottom line is the exact cause isn’t known. And neither is a cure. But that does not mean there isn’t hope. An outgrowth of Dr. Landa’s work in early detection – despite the instability of a diagnosis of autism before the age of 2
– is the discovery that intervention, early on, can assist the brain in developing the pathways needed for learning the skills and coping mechanisms required for some children with autism to show greatly improved ability to communicate and interact with others.
“There’ve been tremendous changes. We’ve seen improvement with every child.” The
most effective treatments for the symptoms of autism are speech-language therapy and developmentally-based and behavior-based interventions. According to Dr. Landa in an article for Nature Clinical Practice Neurology, these interventions should be intensive and integrated into the daily routine of the child. It is important that caregivers and family members be
trained to use the strategies that are effective. Additionally, trained clinicians should be sought to provide treatment as well. Some of the strategies seem to be good ideas for any growing child, like consistent routines, keeping settings as familiar as possible and introducing new situations and surroundings with care and planning. Others are based in patience and a clear understanding of the circumstances, like realizing an instruction might need to be repeated a few times before compliance is expected or that a multi-part instruction may be too complex. Others are more structured, like the types of play activities, selecting those that are fun and teach social interaction skills. What is key to deciding the type of interaction is the age of the child and the exhibited social and language delays. The importance of these types of interventions and the consistent application of some is not lost on the Continued on Page 21
Photo by Talibah Chikwendu
By Zephyr Crenshaw
Effective treatments for autism include physical activities designed for not only fun and social interaction, but for increasing muscle coordination and control. A Publication of the Afro-American Newspapers
Autism: A Different Way of Doing Things
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The Day family; Just special
By Zephyr Crenshaw
Yolanda and Malcolm Day Sr. have five children: Malcolm Jr., 10; Maliq, 8; Mekhi, 3 and twins Marques and Mariah, who are14 months and moving under their own power. In a typical household, this combination of three children under age 5 and two boys in the prime age for sports teams, is equated with stressful, overfilled days and the need for lots of help. But in the Day household, where the oldest two children – Malcolm Jr. and Maliq – have been diagnosed with autism, stressful, overfilled days and the need for a lot of help, takes on a new meaning. Yolanda said a typical day in her home is probably more work than in a home with “typically functioning children.” She said, “We have to repeat ourselves a lot because they don’t respond to commands as quickly as other children do.
10 Autism: A Different Way of Doing Things
They hear only certain words and not your whole sentence, so it’s a lot of repetition.” More time is required to get ready and distractions are a big problem too. “They are distracted easily,” she said, “so everything has to be shut off, especially in the mornings.” Mrs. Day said they have to be hypervigilant, because overlooking or missing a sound or action could mean trouble. “Our oldest son knows how to open doors, so you have to have your ears open all the time,” she said, “because if you hear the door open, you know he’s about to head out and you have to hurry up and stop him. “If I tell one of mine to take a bath, they would run the water – they would run the water even after I filled the tub – and it spills on the floor. One time they took all the towels out Malcolm Sr. and of the closet and put them in the Yolanda Day, bath tub.” seated on sofa, with their childen: twins Marques and Mariah in arms; seated on floor are sons, Malcolm Jr., Mekhi and Maliq. Malcolm Jr. and Maliq have been diagnosed with autism.
Courtesy photo
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Courtesy photo
Mrs. Day, shown with her husband and eldest sons, says autism is something you work with and overcome.
boys are learning to do that on their own. That is a tremendous help.” Mrs. Day said the assistants they have now are like having extended family in the home. “The children have gotten used to them being around,” she said. She said that despite the challenges, she wouldn’t change it. “At first, it’s kind of painful. You see this beautiful baby in front of you and then when they say, ‘Something’s wrong,’ it’s painful because you can’t imagine something being wrong with your child,” she said. “But then, after that, you just have to work through it and find the best possible solution to help them get through it. “Now, I don’t really think it’s a bad thing. I don’t think I would change it. We get to have ‘the kid’ a little longer. I like the fact that they are still innocent and haven’t been touched by society.” Mr. Day said, “God gives special-needs children to special people.” Mrs. Day praised her husband’s patience and commitment. “Everything they are doing,” she said, “they learned from him.” Seeing autism as “something you can work with and overcome,” Mrs. Day said, “My children are running, they’re playing, they’re laughing. You can’t ask for more than that.”
Thankfully, the Day’s have qualified for services and got a spot in the Maryland Autism Waiver Program. This provides ongoing assistance to the boys and by extension, the family. At first, it was very difficult to find day care for the boys. “I can remember trying to go to work and the day care calling me and saying, “I’m sorry but this isn’t going to work.” So I did a lot of temporary work because I could not hold a full time job because I could not find day care that would actually keep him. Now, with the waiver, the family has access to after-school centers that provide therapeutic care and intervention services. The boys also have special aids that help them at home. “That’s a tremendous help for families,” she said. “They [the aides] come in the evenings. They help Courtesy photo with their homework, getting ready for Malcolm Jr., left, and Maliq Day are learning, with assisbed – washing up, brushing their teeth – tance, to be independent. Some of the skills they have making their beds and that kind of stuff. acquired include preparing themselves for bed and making Now they are working with the boys on lunch for school. making their lunches for school. The A Publication of the Afro-American Newspapers
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Being the v oice for your child By Zephyr Crenshaw What has been said, time and time again, by experts in the field of autism, is that families are the experts on their child’s disorder. Because they are on the front lines with it everyday, they know the most about how the disorder manifests in their child, what makes it worse, and what treatments and strategies seem to be effective for their child. And now, with the IAN Project and its information available to families, they are also armed with the collective knowledge of other families that can be compared and contrasted with their own. All this means that there is no more effective an advocate for a child with autism spectrum disorder than a parent or guardian. To help in that role, here are some important tips and things to consider: Create a couple of computer files – in a word processing program or a simple text file – or use a notebook or journal to track observations and information about how the autism spectrum disorder is impacting your child. Include notes with notes, thoughts and observations on each interaction with a doctor, specialist, researcher or organization regarding your child’s autism. Along with this, keep a record of every test result, educational plan,
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Presenting the facts about autism
By Zephyr Crenshaw
FACT: Autism is a spectrum disorder.
Autism is characterized by significant problems with communication, behavior and socialization. These problems first appear as developmental delays when a child is very young and autism is usually diagnosed by age 3. It is called a spectrum disorder because the combination and severity of symptoms fall across a spectrum from mild to severe.
FACT: Most people do not grow out of autism.
In most cases, children diagnosed with autism will have the disorder for life. The language, social and developmental delays indicative of autism when a child is small can be significantly decreased with early intervention and treatment, but autism does not have a cure. In rare cases, children diagnosed with autism spectrum disorders at a young age may make such significant improvements that they are no longer diagnosed with the disorder when they are older. They may still have difficulties with communication and attention. For best outcomes, according to Dr. Rebecca Landa, director of Kennedy Krieger Institute’s Center for Autism and Related Disorders, children need appropriate and intensive intervention, as early as possible.
FACT: Research indicates that a predictive diagnosis of autism can be made as early as a year old.
Dr. Landa was lead author of the results of a study showing that specific developmental delays in children as young as 14 months old are predictive of a stable diagnosis of autism at age 3. Early detection is critical to early intervention, which has the best chance of impacting the severity of autism’s symptoms and making it possible for children with autism to reach their fullest potential.
FACT: Autism in not more prevalent in AfricanAmericans.
The Center for Disease Control and Prevention reports there is no statistically significant difference in the prevalence of autism among African Americans and whites. In fact, from five of the reporting sites, the prevalence among Blacks was statistically lower than for Whites. The CDC also reports that 1 in 150 children will have autism – based on the information from 14 reporting locations – with New Jersey’s rate of prevalence being significantly higher, 1 in 100 children there, and Alabama’s rate being significantly lower at 1 in 334 children. Also from this data, the CDC reports that autism spectrum disorders are 3-6 times more prevalent among boys than girls. A Publication of the Afro-American Newspapers
At present autism prevalence statistics are gathered through the Autism and Developmental Disabilities Monitoring Network. The CDC began the ADDM Network with six sites in 1996, which expanded to 14 sites (Georgia, Arizona, Maryland, New Jersey, South Carolina, West Virginia, Alabama, Arkansas, Colorado, Missouri, North Carolina, Pennsylvania, Utah and Wisconsin) by 2002, the last year data is currently available. In a speech to a U.S. Senate subcommittee in 2007, CDC Director Julie L. Gerberding, M.D., explained that this network is the only one tracking autism data from multiple sites and captures data on up to 10 percent of the nation’s population of 8-year-olds. The CDC anticipates reports for 2004 and 2006 by the end of 2008.
FACT: Obsessive compulsive disorder and Tourette’s Syndrome are not autism spectrum disorders.
According to Dr. Paul Law, director of Kennedy Krieger Institute’s IAN Project, obsessive compulsive disorder or OCD is not a form of autism, but it does overlap significantly. “A characteristic of autism is the presence of some degree of restricted interest and repetitive behaviors,” he said. “People with OCD may also have intensely focused interests, and may feel compelled to carry out certain actions repeatedly but people with OCD do not have communication and social problems – except for the social problems caused by their compulsions and obsessions.” Tourette’s Syndrome, he said, is a disorder where people have involuntary muscle movements including vocalizations. “Because the movements are involuntary, Tourette’s is not thought of as a behavioral, communication and socialization disorder as is autism,” he said.
FACT: Vaccines do not cause autism.
According to the Centers for Disease Control and Prevention, the World Health Organization and the Institute of Medicine, vaccines do not cause autism. This is supported by five large studies that found no link between autism and a former vaccine preservative, thimerosal and 14 large studies that could not link autism to the measles-mumps-rubella vaccine. Dr. Landa said the developmental delays in children with autism happen at the same time as many of the vaccines are given, so what looks causal is coincidental. She said studies were done with children that were not vaccinated and children in that group may still have autism. Major medical organizations, doctors, and public health officials all say immunizations are a crucial component in keeping the public healthy, because disease prevention is the key to public health and immunizations prevent disease. Many infectious diseases once common in the United States are now under control because of vaccines and the immunization process.
Parents can help researchers understand more of the “facts” of autism by joining the national autism registry, a project of the Kennedy Krieger Institute, at www.IANproject.org. A Publication of the Afro-American Newspapers
Being the voice for your child treatment plan, etc. This is a big job and will take more than a folder over time. But this information is crucial to being an effective advocate and for making sure secondary and tertiary issues are not created in the process of finding effective treatments. Having a central location for all this information means you become the one source to provide a complete picture of the process to any new physician or therapist. • When going to see a new specialist about your child, create a joint synopsis of the highlights of information from both personal observations and interactions with professionals. This will help organize thoughts and ensure something important is not left out or a question to be asked isn’t forgotten. • Sometimes your job as advocate simply involves educating others about ASD. While this can seem burdensome, every time someone is informed about ASD, your child is helped, along with the children and families of others with an autism spectrum disorder. It also builds awareness of the disorder among the general public with the correct information. • Provide a list – for teachers, counselors, therapists, even other family members – that outlines techniques that work with the child. This should include information like signs a meltdown is coming, calming activities, rewards that are appealing and effective ways of getting his or her attention. This list will help the service provider give the best to, and get the best from, your child. Autism: A Different Way of Doing Things
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Wanting research IAN Project: Speaking to go faster to the experts By Zephyr Crenshaw
Dr. Paul Law and his wife Kiely, were living a hectic life of the fast track. Both were in medical school and they had a small son, Isaac. Studies, rotation, classes, sitters–– it was all a blur. And then, when Law was in his third year of medical school and Kiely in her first, Isaac was diagnosed with autism. Until that point in their lives, the Law’s plan was to finish medical training and return to the Democratic Republic of the Congo where Paul was raised. There they would raise their family and provide medical services in that underserved community, like his missionary family had done for generations. But Isaac’s diagnosis changed that mission. As scientists, their first inclination was to learn everything they could about autism. Dr. Law said he changed his area of focus from
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Dr. Paul Law 14 Autism: A Different Way of Doing Things
By Zephyr Crenshaw
“The core idea is that families are the experts in autism and that they have a lot of insight to offer,” said Dr. Paul Law, director of IAN, the Interactive Autism Network, “and need to be very much a part of the research process – on the research team, working alongside care givers and researchers to advance autism research.” It is from this foundational idea that the IAN Project was created. IAN is an online research environment at ianproject.org, designed to: create a cooperative community environment between families and researchers; facilitate the sharing of information between families and, between families and researchers; provide assistance to the research process by making it easier for projects to be matched with willing participants; and provide a central location for the dissemination of information to families about autism research. Families can register – and Dr. Law says that typically it’s moms that are most active for their families in the IAN community – and provide information about how autism is affecting them, what treatments they are using and their impact and can agree to be contacted about research projects going on in their area. “We ask parents to provide an enormous amount of information,” he said. “They really are the best observers of their own child’s difficulties. They’re the experts on what they are actually doing for their child. “We document that and use the information ourselves to get back to families so they can see what’s going on nationally, and also that information is provided to researchers and they can use that to better understand the disorder.” “The IAN community Web site is where our relationship with families occurs. We have discussion boards, listening to them, talking to them, hearing their concerns, seeing their reaction to the data we’ve put out.” Dr. Law said that in the 16 months since the project was launched, 25,000 people have registered and over 100 research projects are actively recruiting and finding families through IAN. “Before, about 80 percent of research proj-
“It makes me feel like I’m not to blame, gives me peace of mind. Once you get a supportive community around you, you will see it is alright. You can’t do this in isolation.”
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ects failed or were really delayed because of the matching problem – parents being able to find researcher and researchers being able to find them,” he said. “We’re eliminating that. The IAN Project takes away that barrier and provides a matching service between researchers and families. Researchers don’t know how to market their projects to families and we help them do that. It’s a win-win situation.” He said the project is also providing some of the answers families are desperately seeking. IAN, the largest database of autism treatments, has catalogued 400 different ones. Dr. Law said the information has allowed for the creation of reports on treatment trends, provided alternatives for consideration by families and yielded some interesting information, like the fact that children with autism average five different treatments at any given time. The aggregation and review of the collected data also points to topics that deserve more research, which is helpful for the research community and advances the search for effective treatments and a cure forward. “They [families] don’t join IAN because they expect to get something out of it themselves, today,” said Dr. Law. “I think the parents who join are motivated by this as something we have to do together, as a community, to make progress and so they participate with an awful lot of enthusiasm.” Yolanda Cosby, the principal participant in the IAN Project for her family, said once she accepted her son Eric’s diagnosis, she began to research autism and in that process found IAN. After spending a couple of hours entering information, she said the project began sending her information. “That’s how you get more involved,” she said. Participation, she said, has changed her. “It gave me the sense that it was okay,” she said. “It made me feel like I’m not to blame for Eric’s condition. It gives me peace of mind to learn that other families are experiencing some of the same situations. Reading their responses seemed to provide a virtual support system. Once you get a supportive community around you, you will see it is alright. You can’t go through this in isolation.” She said not only was IAN an important source of information for her, but for the entire autism community and that the more people who participate, the easier it will be for researchers to find solutions. She is quick to emphasize that IAN is not “something where someone is trying to get in your business.” “We’ve got to have all walks of life in order to get good information out,” she said. According to Mrs. Cosby, one of the most appealing parts of participation in the IAN project is that it can be done via computer. She said traveling to participate in other research projects is hard because it’s difficult to take her children to new places, so being able to participate online is a bonus. “Everything is on the Web site,” she said, “it just takes time to answer a few questions.” Once the information is available, she said, IAN can sort it and researchers call and ask for what they need. The information IAN sends back to families is helpful she said. Mentioning the report on depression in mothers of children with autism A Publication of the Afro-American Newspapers
Continued on Page 19
Wanting research to go faster
international medicine to autism. “I set up a rotation at the Kennedy Krieger Institute to learn more about autism – both personally and professionally,” he said. From there, life was just more of a blur, as the family tried to do it all. “I don’t know [how we managed to finish medical school and deal with the autism] to be honest,” he said. “We got used to leading extraordinarily busy and stressed lives, because we both had a lot to deal with, having a child with autism – emotionally and just practically, how to manage it.” Both were attending Johns Hopkins Medical School and Dr. Law said that while it was not easy, the program was flexible. “When my wife needed an easier year she took a year off medical school,” he said. “I also took the year off from medical school to do a masters in public health, which is an easier year than medical school. “But it wasn’t easy.” Early in their investigations of the disorder, while looking for answers for their personal circumstances, Dr. Law said he was surprised by the lack of research and slow pace of the process. “The thing I was struck by was our lack of knowledge about autism – what causes it, how best to treat it,” he said. “Also, science, in general, wasn’t moving forward very fast. It wasn’t making the kind of progress that other disorders were making.” So, he committed himself to the cause. “Without ever really wanting to get into medical research necessarily,” he said, “I found myself very, very Continued on Page 19 Autism: A Different Way of Doing Things
15
Difficult, but doable
By Zephyr Crenshaw
“I knew when Eric was 2,” said Yolanda Cosby about her son who is now 6. “Not that he had a disability, but I knew at two that he was a little different – that his needs were going to be different and that he would communicate differently.” Autism was first mentioned when Eric was about 2 and the family admits they were in denial. It came up again as he was going into kindergarten, which was when he was finally diagnosed with the disorder. “I guess as an educator, you have the expectation that your own children are supposed to be perfect,” said Cosby, Eric Cosby, whose work involves who was children with special diagnosed needs, “That your own with autism, children should have with his everything going on as favorite pupfar as education and pet and dog they shouldn’t be disTuffy. abled.” Much of her denial, she said, was related to trying to figure out what she might have done wrong. She wondered about the medications for high blood pressure and gestational diabetes she took during pregnancy and she even wondered if she should have done more research and waited or refused Eric’s immunizations. “I used to think about it all the time,” she said. “I think when I was alone and reading the information, I wondered, ‘How did I not know?’ The teachers were telling me this was going on with my child and I’d ask myself, ‘Why didn’t I just listen?’” For Yolanda Cosby, things shifted
when she became part of the larger community of autism through the IAN Project. After participating in activities including the creation of a national public service announcement, she said, “It gives me a place to feel like I’m not the only person that’s dealing with this. Children are coming from all walks of life, so it has nothing to do with what I
understand, they’re looking and wondering ‘Why doesn’t she do something about this?’ But when you are around people that have children with autism, it’s different. They understand. They’re not looking at you funny. They’re very supportive. “You can’t do this in isolation. It’s not going to work if you do things without support.” The support through the IAN Project and other groups has helped her personal perspective about Eric’s disorder and made her want to share with others, especially the African-American community. “Sometimes, I think, AfricanAmerican families hide a lot of things,” she said. “In my family, when I first brought it up, talking about autism, it was a sore subject. Even today, it’s almost like they feel, ‘He’s just being a boy. Why are you getting these Courtesy photos services?’ “I think what happens in our community is we tend to feel like our children are our own business, so we do not seek help from ‘outsiders,’ and then what happens, especially with children with autism is, it’s too late to do anything about it because they didn’t get the early intervention, because in Eric Cosby, center, with his parents. their minds, they are did. It makes me feel like I don’t have just thinking my child’s going to be to explain myself. alright.” “I don’t know what it was, but after To try and impact that, Cosby’s doing that public service announcement, become deliberately vocal about proI felt it was okay. moting the IAN Project. “I wanted to “When Eric was having temper put myself in a situation where I can tantrums and those kinds of things – say, ‘Look, it’s okay. It doesn’t mean when you are around people that don’t that you’re a bad parent. There’s noth-
16 Autism: A Different Way of Doing Things
A Publication of the Afro-American Newspapers
Courtesy photo
ing that you’ve done. We’re trying to necessary. “It takes a special person to through various assistance programs], gather information so they can try to deal with Eric,” she said. “You have to but they don’t have the person.” figure out how to help these children’,” be trained to deal with him. And a lot of But finding someone to help and she said. the time, I do not have someone in finding a way to get time free time is While being in contact with others place that can do that. It’s hard to walk very important. “You have to take a who share her family’s circumstances out that door to even leave them – Eric break as a mother. You have to schedule has brought a measure of personal and Jalan – with a family member. I it in,” she said. “You go, get a break – peace, life with a child with autism still keep thinking, ‘Are they OK?’ ‘I hope and I’m talking about away from the presents many challenges. “We are still they don’t have a seizure,’ that sort of house, away from your household working through it,” she said. thing. duties – you get a break, refresh and Cosby said she employs many “I will say, that’s the hardest piece, then you come back. And you’re ready strategies in dealing with Eric – and his finding someone to watch your child. to start over again. younger brother Jalan, who “You don’t want to get burnt has not yet been diagnosed out. You also don’t want a division with autism but has a seizure to form between you and your husdisorder and a language delay band.” – that her husband finds diffiAs hard as it is physically, mencult to use. One is to offer tally and emotionally, it can be choices, like which kind of equally challenging financially. cereal to have in the morning. Children with autism require a “My husband comes from the variety of intense interventions old school. There is no ‘you with specialists, medications for make a choice,’ it’s ‘You do related physical disorders and what I say and that’s it.’” sometimes providing all the necesFor her, use of the stratesary care makes working difficult. gies is a mechanism for keepAnd many of the interventions are ing the situation under connot covered by insurance. “Until trol and on schedule. “Most the law passes that some of these Eric Cosby with his favorite puppet, and his of the time,” she said, “I am things are going to be covered by younger brother, Jalen, goof off for the camera. insurance, it can be expensive,” just trying to avoid a meltdown that could take an hour said Cosby. to go through, and get him back to a We have so many children with autism She suggests tapping into people place where we can go ahead and connow and the resources are limited. It’s who know what resources are available tinue with the day. When it’s time for very difficult.” and where the money is. “That part is me to work and we have to go through Even with some funds availvery hard to research on the this meltdown process, that can be very able to help pay for the Internet,” she said. “You have difficult. child-care assistance, the to know people that get “I don’t want to put work first, in real challenge remains that information. That’s “I think when I front of him, so I try my best to put into finding someone only way you are was alone and reading the place things that will prevent the meltqualified to do the going to find it. the information, I down.” job. “There is no “The financial Schedules and routines work to suplist,” Cosby said. part is difficult. If wondered, ‘How did I not port this and she said it is most easily “You have to find you are a member know?’ The teachers were done during the week. “On the weekyour own person. of the Arc or telling me this was going on Autism Speaks or ends, if I put him on a schedule, that Some parents like puts me on a schedule and I don’t get to that – they may one of the support with my child and I’d ask rest,” she said. have someone in groups, you’ll start myself, ‘Why didn’t I Dealing with a child with autism can mind already – but receiving all of that just listen? ’ ” be a drain on physical, mental and emo- what about families information. That’s the tional resources for the family. It is difthat don’t have anyone only way you are going to ficult to be on duty from sunrise to sun- in mind. They have the be able to really get the set, with no easy relief, even when it is money to pay [personally or information.” A Publication of the Afro-American Newspapers
Autism: A Different Way of Doing Things
17
Resources For Families
By Zephyr Crenshaw
Families of children with autism need a lot of support. Often this comes from other families raising children with an autism spectrum disorder – people who have first hand information that can be useful and who can provide understanding. Support in the form of access to resources – financial and otherwise – is also important, as is information about the disorder, treatments, research and the latest developments. There are many groups and organizations that facilitate and provide the dissemination of information and provide access to many of the kinds of support needed. Some of these are listed below.
Th e A rc http://www.thearc.org According to the website, this is the largest community-based organization “of and for people with intellectual and developmental disabilities.” It has chapters across the United States and provides services and support to its members, people with intellectual and developmental disabilities and their families. “The Arc’s vision is that every individual and family affected by intellectual disability in the United States has access to the information, advocacy, and skills they need to participate as active citizens of our democracy and active members of their community. We work to ensure that people with intellectual and developmental disabilities and their families have the support they need to live an ordinary, decent American life.” A u t i s m Wa i v e r P r o g r a m http://www.dhmh.state.md.us/mma/waiverprograms/ This program is designed to use the portion of the Social Security Act that waives some of Medicaid’s requirements so states cane use the funds to cover a variety of home and community-based services. “The Autism Waiver, through Medical Assistance, will allow eligible children with Autism Spectrum Disorder to receive specific waiver services to support them in their homes and communities.” The funds/slots available in the program are limited and currently Maryland is only taking requests to be placed on the waiting list.
K en n ed y K r i eg er I n st i t u t e C en t er f or A u t i s m & R e l a t e d D i s o r d e r s ( CA R D ) http://www.kennedykrieger.org, (443) 923-9400 CARD provides a variety of services for children with autism spectrum disorders and their families, including research, clinical (assessment and intervention) services, community outreach and training. Part of the national
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Autism Treatment Network, CARD’s services and trainings are based on evidence-based practices.
I n t er ac t i v e A u t i s m N e t w o rk ( I A N ) http://www.ianproject.org/ As the first national autism registry, the IAN Project is an online environment designed to facilitate the collection, dissemination and sharing of information regarding children with autism, in an effort to assist families in locating effective treatments, interventions and strategies and assist researchers in gaining information and access to willing study participants to move autism research closer to a cure. I n f a n t s a n d T od dl e rs P ro g r am http://www.marylandpublicschools.org/MSDE/divisions/e arlyinterv/infant_toddlers The role of the Infant and Toddlers Program is to make a difference for children with disabilities through early intervention and preschool special education. Its stated mission is to give every child the best possible chance to succeed. The program is designed to provide assistance during the first three years of “the child’s developmental journey.” N E CT E C National Early Childhood Technical Assistance Center http://www.nectac.org/ According to the website, the mission of this organization is to: “strengthen service systems to ensure that children with disabilities (birth through 5 years) and their families receive and benefit from high quality, culturally appropriate and family-centered supports and services.” The organization serves all 50 states and is supported by the U.S. Department of Education’s Office of Special Education Program.
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IAN Project
Continued from Page 15
as an example, Cosby said this was the type of report that can come from IAN. “I would like to see more things like that,” she said. Cosby acknowledges that participation is not about getting answers today, but it is working to actively promote the IAN Project, including participating with her son in a nationally distributed public service announcement. “It’s like I’ve switched roles now,” she said. “I am no longer just a parent of a child with autism, but a piece of a large jigsaw puzzle and I reach out a little more because of this project.” “Every time we send out a new form for them to fill out, it’s amazing. We’ll launch a new form and within 24 hours, 1,000 of them are completed – which is larger than most autism studies in the world,” Dr. Law said. “I’ve been surprised about how enthusiastic and engaged families are.” But it’s not just the families and researchers who are noticing the benefits of the information the IAN project is able to provide. Lawmakers are noticing too. “ Laws have changed in two states regarding insurance coverage for certain things,” he said. “The data provided today can change the services received tomorrow. It’s not just a long-term investment. It’s also something that can change reality today.” To learn more or to join the IAN Project, visit IANproject.org.
A quick look at autism
Continued from Page 7
mental causes too. “There is probably a gene/environment interaction,” she said. “We really have a lot of work to do to figure this out.” Because a cause for autism has not been identified, diagnosis of autism is done with behavioral assessments. “There is no blood test for autism,” said Dr. Landa. “There is no medical test to diagnose autism. So we have to define the diagnostics based on the behavioral symptoms.” Part of the diagnostic process includes getting a thorough behavioral history from parents. This can include looking at family movies and photos albums for accurate observatations. It also involves a variety of play-based assessments with the children. Once a diagnosis is made, intervention related to language, skills development and social interventions are critical to generating brain pathways needed to function in society. While intervention can lessen the impact of the symptoms of ASD, at present, autism is not cured, but is a lifelong disorder.
For more information on autism, treatments and services, visit the Kennedy Krieger Institute’s Web site at kennedykrieger.org, the Autism Speaks website at autismspeaks.org and the IAN Project Web site ianproject.org/. A Publication of the Afro-American Newspapers
Wanting research to go faster
Continued from Page 15
interested in autism research and how to make it go faster.” Isaac is now 15, and two medical degrees, some master’s degrees and three additional children later, the Laws are doing their part in making autism research move faster. Dr. Paul Law was instrumental in the conception and implementation of the Internet Systems for Assessing Autistic Children – ISAAC – working with the Cure Autism Now Foundation. ISAAC is a collection of Internet-based researcher tools to house, evaluate and share data on autism between researchers and projects, keeping them connected to move research forward more rapidly and easily. He also conceived, with the Kennedy Krieger Institute and Autism Speaks, implementing and running the Interactive Autism Network – the IAN Project. While Paul is overall director of IAN, Kiely serves as the research director. As the first national autism registry, the IAN Project collects data from those most knowledgeable about autism – families of children with autism – and uses it to make information available to the families and researchers, which helps form more solid research proposals, provides a wealth of information to participating families and increases researcher access to families willing to participate in studies. These projects have positively impacted the area of autism research. “At the end of the day, what we want is answers, and right now, I can see the process getting better,” he said. “IAN makes things happen a lot faster.” Autism: A Different Way of Doing Things
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Early detection; Continued from Page 8
crucial for successful intervention
gross motor skills. This research has led to methodologies that can be used to predict autism in child as young as 14 months old for as many as 70 percent of the children that were ultimately diagnosed. These predictive tools allows interventions to get started earlier, which children are still young, when the
Photo by Talibah Chikwendu
Pointing at an object is an important developmental milestone for children around 18 months. Delays in reaching early milestones should be investigated.
20 Autism: A Different Way of Doing Things
treatments have the most success of generating positive change. Mrs. Day said when her oldest son, Malcolm Jr., was diagnosed, she had a hard time with it. She said she noticed he would not make eye contact and had no interest in playing with other children and that he would not engage in conventional pretend play. “Some of the things my older son was doing, I can remember doing when I was younger,” she said. “That’s why I never thought anything was wrong with him.” Her older son had been diagnosed with autism and was receiving treatment when her second son, Maliq, was born. Because families with one autistic child are more likely to have others, the Day family watched Maliq carefully for all the milestones. “He was so social as a baby and it was almost as if he were talking right out of the womb,” Mrs. Day said. “He would smile all the time and look right at you. Then right about 18 months, it literally happened overnight. A light went off and everything was different.” By the time Maliq stopped being social and verbal, the Day family was already a participant in Dr. Landa’s study. The program recommended the family contact the Baltimore Infant and Toddler program to get him tested and registered for services, which include various interventions and assistance for the family. Mrs. Day believes this has made a difference. “He [Maliq] is not as severe as our older son,” she said. The Day’s third son, Mekhi, now three, is participating in the study at Kennedy Krieger. While he is still non-verbal, his mom says he has not been diagnosed with autism, but is still being evaluated. Mrs. Day says she wants as much information as possible about autism to be available. “I think that’s why I’m volunteering to help the cause,” she said. “I definitely want to do my part in finding cures.”
“I can’t stress enough how important early intervention is. Good education, good inter vention really helps children get better.”
For more information on early detection research at Kennedy Krieger Institute, call 877-850-3372 or e-mail reach@kennedykrieger.org. A Publication of the Afro-American Newspapers
Early, intense intervention gets results
Continued from Page 9
implemented at least three or four of the strategies that we learned.” This enhanced program, for children identified as exhibiting behaviors along the autism spectrum, was more intense, going from one day a week to two. Along with teachers, parents work with the children as they move through the seven activities of each day. And the routine created is designed to help children with autism navigate a big hurdle, transitioning between activities, in a way that reduces stress and increases independence. Using a picture schedule and songs to mark the end of an activity, students are able to participate in the closing ritual and then use their schedule to go smoothly to the next activity. With assistance, the children are able to find their schedule, locate the picture for
Baltimore City School System, where Charvel McGraw, a speech-language pathologist, is working to create a program modeled after Dr. Landa’s research-based early intervention classroom at Kennedy Krieger. The program works with children up to the age of 3. “Many children who have autism can cope and function in society,” said McGraw. “With early intervention, they will learn to adapt to society. We are here to make sure they have every opportunity.” To get this effort off the ground, the Maryland State Department of Education partnered with Kennedy Krieger to train educators from different areas of the state. One of the training programs helps professionals learn how to provide early intervention for autism The most based on Dr. effective Landa’s model. interventions The training, at for children Kennedy Krieger’s with autism Center for Autism are those & Related integrated Disorders, consistinto the day ed of some lecand practiced tures, but was by caregivers, mostly observation therapists and hands-on and family deployment of the members. strategies. “It’s a very practical way to learn,” she said. McGraw said after her training, she came back and changed the structure of her instruction area and of the planned interaction. “We changed basically everything,” she said. “We changed a part of their day so they had different routines in their day and Photo by Talibah Chikwendu A Publication of the Afro-American Newspapers
the next activity and match that picture with the activity station in the room. “This is a great way for them to learn to manage their day,” McGraw said, “... to be more independent.” She said the program is designed to get the students prepared for what a preschool day is like as well as condition them for things that are difficult for children with autism to handle. The change in intensity and in the type of intervention has shown results. “There’ve been tremendous changes,” she said. “We’ve seen improvement with every child.” The program also addresses the need for consistent intervention by providing an opportunity for parents to be involved. “Our program is set up so the parents have to attend with the children,” McGraw said. “So we always have parents there, hands on, with the child. They are learning the strategies right along as we are implementing them, and they are able to take them and continue utilizing them in their homes.” While BCPS is the No. 1 agency providing services for identified 2 year olds with autism in this area, there are other agencies that provided similar services to that age group and others. In addition to the Kennedy Krieger Institute, their affiliate PACT, in Woodlawn, offers the same type of services as BCPS based on the intervention developed through Dr. Landa’s study. For more information on research study participation, early intervention, or professional training, call 877-850-3372 or e-mail reach@kennedykrieger.org.
Autism: A Different Way of Doing Things
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Doing Your Part
F
rom treatment and education to research and training, Kennedy Krieger provides services at all levels for children with autism. Private funding plays a critical role in the Institute’s ability to serve these children and their families, and directly impacts the number of children they can help. Here’s how YOU can help:
Festival of Trees
If Santa had a theme park, Festival of Trees would be it! On Thanksgiving weekend, Nov. 28-30, Festival of Trees, the largest fundraising event for Kennedy Krieger and the largest holiday-themed event on the East Coast, will celebrate its 19th year as an eagerly anticipated family tradition. Last year nearly 35,000 visitors descended upon the Maryland State Fairgrounds for holiday cheer and the magical setting of Festival of Trees. Festival of Trees consists of over 500 spectacular holiday trees, wreaths and gingerbread houses decorated by local artists, designers, schools and community groups. Additional attractions include live holiday entertainment, seasonal merchants, a Santa letter writing station, model train display, children’s craft and game area, “reindeer” pony rides, a magical carousel, and, of course, Santa. Festival of Trees benefits the more than 13,000 children with autism and other disorders of the brain and spinal cord served by Kennedy Krieger each year, raising funds for patient care, education and research. A well-known and valued international resource,
Kennedy Krieger is committed to providing quality services to individuals with special needs. Since its inception, Festival of Trees has raised over $10 million to support these important programs. Visit www.festivaloftrees.kennedykrieger.org this fall for information on the 2008 event, including ticket prices, times, entertainment schedule and special celebrity appearances. Festival of Trees is planned and implemented by more than 600 caring community volunteers and staff who give freely of their time and talent. Without these individuals, Festival of Trees would not be able to open their doors to the families. With jobs ranging from event set-up and holiday decorating to ticket taking and tree packing and breakdown, individuals of any age are encouraged to help volunteer and make Festival of Trees a success by calling the Kennedy Krieger Development Office at 410-923-7300.
Now in it’s fifth year, ROAR! Ride On for Autism Research is a bike ride, nature hike, and family festival dedicated to raising critically needed funds for autism research at Kennedy Krieger Institute. On Saturday, April 25, 2009, ROAR! will once again be held at Oregon Ridge Park in Cockeysville, Md. to celebrate the conclusion of Autism Awareness Month. Participants in ROAR! can choose to ride a 50mile, 25-mile, 10-mile or low mileage youth ride, or they may hike various nature trails throughout Oregon Ridge Park. The event also features festivities for the whole family including entertainment, refreshments, bike-shop representatives, and one of the area’s most impressive playgrounds. In 2007, ROAR! implemented a brand-new online fundraising component which bolstered attendance and fundraising by over 70 percent from the previous year. With this new component, participants were able to form teams, build personal Web pages and raise
money from supporters by securing donations online. All the funds raised at ROAR! go directly towards autism research programs at Kennedy Krieger. Autism is a complex, developmental disability that affects a child’s ability to communicate, understand language, play and relate to others. With the incidence of autism on the rise, now as high as 1 in 150 children, early detection and intervention, the primary focus of Kennedy Krieger’s autism research, are critical to improving outcomes for children. Since the inaugural ride in 2005, ROAR! has raised over $600,000 for autism research at Kennedy Krieger Institute. Visit www.ROAR.kennedykrieger.org in early 2009 for more event details and to register to participate. For those interested in volunteering at the next ROAR! Ride On for Autism Research event, please contact the Kennedy Krieger Development Office at 410-923-7300.
ROAR! Ride On for Autism Research
22 Autism: A Different Way of Doing Things
A Publication of the Afro-American Newspapers