RAINBOW BRIGHT
BEFORE JENNIFER BROWN’S SON WAS DIAGNOSED WITH AUTISM, SHE SEARCHED
HIGH AND LOW FOR CLUES ON WHAT WAS HAPPENING TO HIM. HERE, THIS
MOTHER-TURNED-ACTIVIST GETS ANSWERS FROM TWO LEADING AUTISM EXPERTS
IN THE HOPE THAT HER QUESTIONS SHINE SOME LIGHT ON YOUR OWN PERSONAL
JOURNEY THROUGH LIFE WITH A CHILD ON THE SPECTRUM.
The most frightening period of my life was in the months
following my son Benjamin’s second birthday, as he gradually
but completely lost the few words he’d learned to say.
My doctor said he was fine, that regressions can happen as part of development. Benjamin slipped away into his tiny world of spinning and humming, and my husband and I didn’t know where to turn or what to do.
It was four years ago this month that we finally got some help, first from the school system, and then from the Center for Autism and Related Disorders (CARD) at Kennedy Krieger Institute in Baltimore. Benjamin is just now 6 years old and is as busy as a child can be. His time is split by a half-day mainstream kindergarten class and a half-day autism cluster class with Fairfax County Public Schools in Virginia, and he spends his afternoons at It’s Elementary, a mainstream after-school program in McLean, Va. His weekends are filled with adapted classes for children with disabilities, such as swimming and gymnastics, offered through our County Parks and Leisure Department. We have now fallen into a sort of rhythm, and Benjamin’s young life is as busy as any other child’s. I often feel lucky to have found the resources we did—they are what brought us to this stage. Fortunately, the landscape has changed for parents concerned about autism, and awareness is greater than it has ever been. I am fearful that still too many parents have yet to realize the resources that are available and are left to navigate these waters on their own, as we were.
Today, autism is a disability that has become a national priority: as awareness grows, more people than ever are learning what having a child with a “spectrum disorder” means. Politically, autism is a hot-button issue that’s on the agenda of lawmakers, with laws on the docket dealing with everything from respite services to comprehensive issues such as mandated health insurance coverage for various therapies like applied behavior analysis (ABA). On the medical front, autism research is setting the stage for treatments and behavioral intervention.
Much of this advancement is because of organizations like the Autism Society of America (ASA) and Autism Speaks (AS). Thanks to the help of these big organizations, parents and doctors now have much better resources at their disposal and a fighting chance at understanding the complexities behind the disease—what it is, why early detection and intervention is a necessity, what signs to look for in very young children and what action should be taken to make sure children are supported as soon as possible.
Here, I speak to Dr. Rebecca Landa, director of the Center for Autism and Related Disorders (CARD), which was founded more than two decades ago and has been instrumental in shaping autism research both nationally and internationally, and Elise Babbitt-Welker, communications liaison at Kennedy Krieger Institute (KKI), about the Institute’s CARD Research and Clinical programs. The institute is especially important to me, as it is the place where my son was diagnosed and our autism education began.
JENNIFER BROWN: What is the mission of the Center for Autism and Related Disorders (CARD) at the Kennedy Krieger Institute?
DR. REBECCA LANDA: CARD’s mission is to improve the lives of children with autism, and of their family members, through research, clinical service and training. Through research, we develop innovative, evidence-based diagnostic and intervention tools and services for children with autism spectrum disorders and their family members. These tools and services benefit the children who visit CARD through the outpatient clinic and Achievements program. Through the Outreach and Training program, families, paraprofessionals and professionals receive training and gain knowledge about diagnosing and providing intervention for children with autism.
JB: CARD has been researching early detection. In fact, my son Benjamin was a part of that research. What impact has the early-detection study had on autism identification, early indicators and subsequent recommended treatments?
RL: The study of early indicators of autism spectrum disorders has had an enormous impact on national efforts to detect autism early in life. It has led to the development of an international research consortium that brings together scientists from all over the world who share their knowledge on this topic. It has led to legislation involving screening for autism by pediatricians, and it has led to new research in early intervention for autism.
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The Brown Family |
JB: The early-detection study is one of many research efforts CARD is conducting. What other research is ongoing, and what do you hope to find?
RL: At present, there are numerous studies focusing on intervention (for children ranging in age from 12 months through 8 years), causes, neurological functioning and learning in autism. We approach each of these aspects of research from a number of angles. Researchers from many different fields work together in these studies. The studies focus on children ranging in age from newborn through the teen years. Through this research, we hope to help doctors identify autism early in life, diagnose children with autism accurately, develop tests of learning and develop effective interventions for children with autism.
JB: As far as research in relation to diagnosis and treatment, Kennedy Krieger is obviously a leader in regard to autism. There are other areas of research that CARD investigates as well, such as genetic and neurological research. Do you think genetic or neurological research will find a cure for autism, or does the future of autism treatment lie in mitigating the associated disabilities?
RL: There are multiple causes for autism, so we need multiple cures. There is progress in understanding the neurobiological basis of autism, but the cures are not on the immediate horizon. At present, outcomes for children with autism are the best when children receive good behavioral and educational intervention, beginning as early in life as possible.
JB: We’ve already discussed how CARD is involved with treatment as well as research. How does being a research organization help with the treatment services you offer?
RL: There are many research studies being conducted within CARD. These studies lead to new knowledge and to new clinical tools for helping children with autism. At CARD, we are dedicated to translating research findings into clinical services that will help as many children with autism as possible. Then we train other professionals how to use this new knowledge so that children throughout the United States, and even internationally, may benefit from the discoveries that emerge from our research.
JB: Kennedy Krieger has many important research initiatives as well. Will you share a brief summary?
ELISE BABBIT-WELKER: Research initiatives include:
• Early detection of autism as well as other developmental disorders or delays
• Establishing early diagnostic criteria for ASD
• Very early intervention
• Understanding how children with autism and other disorders learn, and how learning can be enhanced
• Effective ways of empowering and training caregivers and other family members of children with autism
• Neuroimmune abnormalities in autism
• Neurological basis of motor and attention deficits in
autism and how these relate to communication difficulties
• Early abnormality in neurotransmitters in autism and how these affect development
• Prevalence of ASD
• Environment-gene interactions in autism
• Cholesterol abnormalities in autism
JB: The Institute launched the Interactive Autism Network in 2007. We are involved and would like to encourage others to become involved as well. Can you describe IAN and share how important the project is for advancing autism research?
EB: The Interactive Autism Network, known as the IAN Project (
www.ianproject.org), is an online autism registry that links parents to researchers to accelerate the pace of autism research in two important ways. First, parents—the people who know the most about their child—provide valuable data to researchers without having to leave their home or office. Second, children with autism are matched with local and national research studies for which they qualify. Launched in April 2007, the IAN Project has become the largest pool of autism data in the world by registering nearly 30,000 individuals to date—thereby attracting some of the country’s most renowned autism researchers. As the first and only national autism registry, the IAN Project is changing the face of autism research as we know it.
JB: The CARD Clinic currently offers treatment services through its Achievements and Early Achievements groups. Benjamin was fortunate enough to receive treatment in both. What are the intervention, instructional and behavioral methods generally employed by CARD in these unique settings?
RL: We use numerous types of intervention approaches, most based in principles of applied behavior analysis. We tailor intervention to each child’s needs, integrating a variety of intervention approaches in systematic and well-defined ways. Within Achievements and Early Achievements, these intervention strategies are embedded within a theme-based approach in which children are engaged in meaningful, socially relevant activities.
JB: Can you be more specific about how the Achievements group is organized? How does a child qualify? How can a family learn more?
EB: The Achievements Program at the Center for Autism and Related Disorders is designed to provide individualized treatment in a small group setting to young children up to age 5 years and 11 months who have difficulties with communication and social interaction. Because of their important role in prognosis, the following skills have been chosen as the focus for Achievements groups: language, social communication and interaction, and self-regulatory development. For more information or to be added to the waiting list for program consideration, please call 443.923.7880. You will be sent a registration form to complete; after it is returned, we will call you to set up a screening.
JB: Benjamin participated in both the Early Achievements and Achievements groups. How do the two differ?
EB: Over the past four years, with funding from the National Institutes of Health (NIH), we have evaluated a new early-intervention model for toddlers with autism spectrum disorders (ASDs). This evidence-based intervention model, which we call Early Achievements, has produced significant improvements in children’s ability to communicate, play and interact with others. These exciting findings have empowered us to continue to provide this effective intervention model for toddlers with ASDs and their families in a clinical setting.
The intervention is provided four days a week for two and a half hours for six months. The program is for children who are diagnosed with or show symptoms of an ASD and who are between the ages of 18 to 33 months. Home visits and parent training are also part of this comprehensive early-intervention program. The classroom is run by a lead teacher and two teaching assistants, and there are five children in each classroom.
In addition to the Early Achievements Classroom, we have also created a comprehensive training program that allows professionals who work with children with autism to be integrated within the classroom and receive intensive training from the professionals who created and work within the model.
This novel combination of didactic and classroom immersion training provides intensive experience for teachers, therapists and paraprofessionals as they learn to implement a comprehensive early intervention for young children with ASD. This unique training system is embedded within a clinical research model that has resulted in a cutting-edge, evidence-based intervention program for toddlers with ASD. The program has been uniquely designed to provide cycles of learning, application of skills and individualized feedback. This permits full-time employees to participate in the training, then return to their place of employment where they may apply their newly acquired skills to their own classrooms/clinical settings.
JB: There are several other educational programs that have emerged in Maryland counties and in conjunction with local school systems as a result of the work of KKI and CARD. Can you provide some background about these?
EB: Kennedy Krieger Institute has four core areas of focus—research, treatment, education and community programs. While the programs of Achievements, Early Achievements and other Center for Autism and Related Disorders work falls within the realm of research and treatment, we also serve families of children with autism through our school programs under the “education” umbrella.
Through collaboration between the Kennedy Krieger School and the Kennedy Krieger Center for Autism and Related Disorders, we now offer a preschool program for children ages 3 to 5 with a primary diagnosis of autism spectrum disorder. The program is located at our own Fairmount Campus, as well as at the Lois T. Murray Elementary School—both in Baltimore City. The curriculum is aligned with the Voluntary State Curriculum, with a focus on pre-K content standards, has a strong research basis, and will focus on the core deficits of autism in a full-day program.
This model preschool program for children with autism will also incorporate a unique professional training program in which professionals are offered the opportunity to be mentored by autism intervention experts through a hands-on process. This is accomplished by immersing the professionals in the classroom, where they observe and actively engage in the intervention, with systematic guidance in all aspects of the intervention delivery and evaluation.
The application of the empirically validated autism intervention model in the preschool classrooms along with the educator immersion training programs will simultaneously address two major needs: high-quality education for young children with autism spectrum disorders and preparation of educators to provide such education to children with ASD in the public schools.
As with all Kennedy Krieger schools, students must be referred to this program by their residential school district.
JB: There is one such program in Montgomery County, Maryland. One of Benjamin’s former teachers in the Early Achievements program, Amy Knecht, is the principal at the school and was involved with its formation. These models set a precedent for school systems nationally, I would think. What is unique about Kennedy Krieger Institute’s Montgomery County School program?
EB: The Kennedy Krieger Institute’s Montgomery County School serves students with autism and other developmental disabilities who are seeking a diploma in grades 3 through 8. It also serves students who are seeking a certificate of completion for ages 11 to 21 with a mild to moderate ASD, who require a highly specialized, focused program for learning. In its first year, the school and the Institute have attracted positive attention for bringing our innovative educational model to Montgomery County families.
JB: Kennedy Krieger works alongside many partners in their efforts. Tell us about these partnerships.
EB: Kennedy Krieger Institute has an institutional partnership with Johns Hopkins University and Johns Hopkins Medicine. Researchers at the Institute also partner with individuals at dozens of different research institutions across the country and the world. Kennedy Krieger Institute has been a University Center for Excellence in Developmental Disabilities Education, Research, and Service since 1963. The role of the Maryland Center for Developmental Disabilities at Kennedy Krieger Institute is to provide leadership in, advise policymakers about and promote opportunities for individuals with developmental disabilities.
Kennedy Krieger Institute collaborates with individuals nationally and internationally on autism research. The cornerstone of this effort is the IAN Project, which is bringing together the nation’s researchers in pursuit of advancing the pace of autism research. As part of the Autism Treatment Network, we are one of 15 sites nationwide helping to define and expand high-quality, evidence-based standards of care for autism.
JB: What are the upcoming conferences that KKI will host for people wishing to learn more about autism, early intervention, treatment methods, etc.?
EB: Kennedy Krieger Institute’s Center for Autism and Related Disorders hosts its Annual Autism Conference each October. Over two days, a host of experts from around the country share their expertise with physicians, educators, speech-language pathologists, occupational therapists, psychologists, policymakers, social workers and parents.
I wish to thank
Dr. Rebecca Landa and
Elise Babbitt-Welker for sharing their insight and their knowledge. May the light of autism awareness continue to shine brighter each day, so that parents can see it without having to look too hard or too long.
For more information:
For the Kennedy Krieger Institute:
www.kennedykrieger.org/kki_cp.jsp?pid=1394
For the Autism Society of America:
www.autism-society.org/site/PageServer
For Autism Speaks:
www.autismspeaks.org
For information on autism treatments:
www.autismspeaks.org/whattodo/index.php
To support 2009 Legislation for Autism:
www.autismvotes.org/site/c.frKNI3PCImE/b.3930723/k.B6BE/News/apps/nl/newsletter2.asp
For information on President Obama’s commitment to Americans with Disabilities:
www.whitehouse.gov/agenda/disabilities/
For inspiring videos:
www.friendshippuzzle.com/index.html
For Ben's TV debut (please select Kennedy Krieger's Autism Programs featured in FOX 45 “Cover Story”)
www.kennedykrieger.org/kki_diag.jsp?pid=1072
For a moving autism awareness video set to “No One” by Alicia Keys:
www.youtube.com/watch?v=F_3CbgjVeK8
For Five for Fighting/Autism:
www.whatkindofworlddoyouwant.com/, Autism Videos www.whatkindofworlddoyouwant.com/videos/view/id/408214
For the Ian Project Video:
www.youtube.com/watch?v=VWLiOP84uPc&feature=channel
For Sensory Critters:
www.sensorycritters.com
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