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Dr. Rebecca Landa, Kennedy Krieger Institute
Dr. Rebecca Landa is the Director of the Center for Autism and Related Disorders (CARD) and the REACH research program at Kennedy Krieger Institute. She is also an Associate Professor of Psychiatry at the Johns Hopkins University School of Medicine. On September 17, 2010 Emily Hotez, an intern at the Autism Science Foundation, interviewed Dr. Landa about her roles at CARD and REACH, and these programs contributions to the critical scientific research currently being conducted on autism spectrum disorders.
Can you elaborate on the goals of the Center for Autism and Related Disorders (CARD)? How does CARD work with families of individuals with autism spectrum disorders?
CARD is a multi-faceted center, so we approach autism in many different ways. We have an outpatient clinical service for children from infancy through the teen years that is staffed by many professionals from varied disciplines. That team provides assessment, diagnosis, and many different types of intervention, including medical management, social skills groups, parent training, early intervention, and occupational therapy. We also have a very large research program with many different kinds of researchers, basic scientists, geneticists and developmental biologists, working on everything from lab work to implementing treatment studies in the public schools. Finally, we have an outreach and training program that involves an annual conference and provides technical assistance around the U.S. Our mission at CARD is to develop innovative ways of helping children and families affected by autism, implement those within our clinic to test their efficacy, and then deliver them to the community at large.
How does CARD create treatments for individuals with autism all across the spectrum? How are intervention programs formulated so they take into account the specific needs of the individual?
Our interventions are happening in two arenas. One of them is in the research arena where we are developing interventions and testing their efficacy. As we do that we learn a lot about how to change those interventions to make them even more potent. During the process we get extensive feedback from families that we use to further refine our interventions. In the clinical arena and in our preschool, all of the interventions that we do are based on individualized child and family needs. For example all of the goals are set precisely based on each child’s level of skill, their emerging skills and the priorities of both the parent and the child. We use multiple methods of interventions; our people are trained to fidelity in multiple types of applied behavioral analysis and developmental approaches. We are able to diversify depending on the needs of the child at different points in the child’s development, and for the different types of goals we are targeting at different times.
How does the Infant & Toddler Development branch of CARD assist parents of individuals with autism?
When a parent of an infant or toddler has concerns that their child may be at risk for autism, they are facing so much uncertainty in terms of where to go for help, and this is for two reasons. First is that testing infants and toddlers and knowing how to identify their developmental level is something that takes specialized training and expertise. Then, when you add on top of that the question of whether a child is at risk specifically for autism, a parent needs a professional who is not only an expert on infants and toddlers, but also an expert on autism in infants and toddlers. There aren’t very many people who have that kind of combined expertise, but we do have that knowledge here at Kennedy Krieger. The second reason why parents’ search for help is difficult is that they really need to find someone who has the sensitivity, experience, and compassion to understand that an infant or toddler is a parent’s most precious entity. Parents’ hearts are full of fear if they suspect their child may have autism. So when you sit down to talk to them about their child’s abilities and risk factors, you have to know how to relate that information to parents based on their readiness to hear the information, what they already know about autism, and their capacity to follow through on recommendations. Sometimes that can be done in a single session and sometimes it has to be done over time. The way that you word the information is everything. Parents remember when their child is 20 years old what that first doctor said who told them that their child had autism. They are heartbroken, and that is a pain that they never really get over. That first experience, finding out that your child has special needs and that your child needs intervention, can either break you apart or it can motivate you, bring you hope, and give you determination to help your child. We want the latter thing to happen. We put a high priority not only in knowing how to assess young children and their risk for autism, but also in how to encourage the family to get to the next step in the process.
One of your studies entails following infants at risk for autism through their first year of life. My understanding of this study is that it tracks the development of typically developing infants in order to determine when autism first appears and how abnormalities in individuals with autism first present themselves. What are the benefits and challenges of this study? What kind of inferences does this study allow for?
The benefit of this study is that we can now identify the earliest markers that development isn’t going quite right and that there is a risk for an autism spectrum disorder, either now or later. The challenges are that we are always developing more sensitive measures, more creative measures, and measures that be administered very quickly. Our hope is that we can develop measures that can be used by people without high levels of expertise. That’s the big aim. We are studying three kinds of infants: infants who have an older family member with autism; infants who have no family history of autism, and about whom the parents are not concerned; and infants who have a risk for developmental delay that is not specific to autism, such as preterm birth. Those are the three groups of children that we recruit.
Can you elaborate on the study you are doing with siblings? Why are you studying siblings of individuals with autism?
We are studying siblings of individuals with autism because about 20 percent of those babies will go to have an autism spectrum disorder, and many will go on to have social and/or communication delays, or even other kinds of problems. It is a very high risk population so if you want to be able to identify risk for autism, what those early markers are, and what developmental trajectory is in those children, you want to be able to do it in as cost effective way as possible. We move through this research about 20 times faster by studying infants who are siblings of individuals with autism than we would with infants from a general population sample.
How do the goals of this study differ from the goals of the study of pregnant mothers who already have a child with autism? How can these studies advance autism research?
The pregnancy study overlaps considerably with my other infant sibling study. In the pregnancy study we have the wonderful opportunity to look at prenatal and neonatal events that could contribute to the development of autism, like the environmental exposures that the mother has while pregnant. Then once the baby is born, the baby is followed from infancy until 3 years of age. During that time we assess the child’s social and communication development. In the pregnancy study, we don’t measure as many aspects of child development as we do in my other study of younger siblings. Families who come to my site for the pregnancy study are welcome to join the other study so they get the benefits of a more comprehensive assessment.
One of REACH’s studies focuses on children between 18 and 26 months who are “late talkers” and who have no family history of autism. What is the goal of this study?
The goal of that study is not only understand what accompanies language delay, for example –mild social problems, but also to look closely at how many of the children have motor delays. These are important things for us to know so that we can develop appropriate interventions of children who are late talkers. There are many late talkers and not all of them are language impaired. Some of them will be, so this will identify these markers. Late talkers also enable us to compare the development of these children to children with autism. Since most kids with autism are language delayed at 18 to 26 months of age, we are trying to find ways to identify which late talkers also have autism. With some pediatricians, if the child isn’t talking yet, sometimes they say, “You’re just a late talker and we’re not going to worry about it.” With this research, we might be able to point to a particular finding that will help to identify that the child is not just a late talker, but is also at high risk for autism.
What are the overarching research goals of the REACH program at Kennedy Krieger?
The goals are to identify the causes of autism, to identify better ways to diagnose autism, and to develop innovative treatments for autism.
We are getting better at diagnosing autism earlier and earlier with some groups saying they can diagnose before the first birthday. What types of early intervention programs would be offered to such young children? Are they being tested? How are they different than interventions for older toddlers?
Interventions for infants are really in the beginning stages in terms of research. For many of these babies there is some difficulty with the motor system, so we work with the parents to strengthen their babies’ motor systems in ways that lead to more advanced play and social interaction. We also help parents develop strategies for engaging their babies socially to establish the foundations for language development. The way that those interventions differ from our treatments for 1-year-olds and 2-year-olds is that with infants, we are working almost exclusively through the parents. Once the child becomes 1 year of age, the child is usually able to mobilize him or herself independently either through crawling or walking, and so there is a greater variety of things you can do with kids at that age. We give parents and their children the opportunity for group-based learning, so that parents can learn from each other and the toddlers have opportunities to engage with their peers. It is interesting because all of the 1 year-old children over the course of the intervention really begin to initiate social interactions with both the other 1 year-olds and the other children’s’ parents. This not only helps to advance their overall development, but also provides some great practical improvements for parents in their daily lives.
My younger sister is diagnosed with PDD-NOS. From what I remember about when my own younger sister underwent early intervention treatment, early intervention focuses on how often the child is initiating social interactions and how the child responds to emotional affect. Can you elaborate on how this is observed in a young child? What patterns are you looking for in regards to early detection of autism?
Oftentimes 2 year-olds with autism will mostly pay attention to objects, if anything. The way in which they direct their attention is also unusual because they typically pay attention to only a select few objects. And then, with those objects, they have very restricted ways of exploring and using those objects. This actually serves as a detriment to their ability to acquire language because when you learn a language, you are learning it partly through developing a lot of knowledge about objects and what they do, what they are used for, and what they are used with. It may also serve as a detriment to play development. If you are not developing your language well and if you are not developing your play well, you are not so much a great pick for a play partner who is your age. Going back to what I said about the child’s attention, if children are paying attention to almost exclusively to objects, they don’t inform themselves too well about other people – information that is conveyed through the face, information that is conveyed through direction of eye gaze, and information that is conveyed through biological motions. For example, if I am reaching out towards you, that probably means I want you to take my hand. You know that biological motion and you anticipate it, and you respond to it. You already have your hand out by the time my hand gets near your body. And so children with autism don’t develop those same anticipations and they don’t understand what facial expressions mean. Basically there is a lot for them to learn just about what information is contained by body movements.
How specifically can early interventions of individuals with autism aid in development in individuals with autism?
It teaches them to pay attention to things that are relevant. What is relevant can involve objects, and it definitely involves people, and being able to tune into what is relevant. Early intervention lays down neurological pathways that enable children to learn more efficiently. We are hoping that it improves connectivity and association, and as well as skills and knowledge. The greater foundation of such knowledge that a young child has, the greater their outcome. It is just like in college; you can’t take bio chem. 2 until you take bio chem. 1. For toddlers, when they learn that a word can represent an object and that this word, “ball” represents that round thing, then it is almost like an epiphany and they begin to be able to learn words more rapidly, and more efficiently. The more they learn, the more they can learn. That is why early intervention is so important.
Can early intervention provide a lasting impact on individuals with autism?
The data from my 2 year-old intervention study that is being published in December shows that children who are given a certain kind of intervention at the age of 2 maintain their gains in things like initiation of joint attention and socially contingent imitation. My studies, as well as others, are indicating that yes, what we teach children in intervention serves them over time and is maintained. There are always exceptions to that of course, children who are regressing or, but on the whole, yes what you teach them improves their outcome.
How does lower functioning autism manifest differently than Asperger syndrome in individuals at such a young age, or does it manifest differently?
Well that’s a million dollar question. I think that it is hard to distinguish. I think that obviously kids who have higher functioning autism or Asperger syndrome diagnoses are going to acquire their words or word combinations on time, but their rigidity socially, rigidity of their linguistic system, and their social pragmatic language problems are probably not so differently than a person with autism.
What is the hope for the future of early intervention? Is this field currently working towards combining other techniques such as neuroimaging with behavioral interventions?
The hope for the future of early intervention is that we are going to be able to treat children younger and younger and we will have more effective strategies for doing that. Right now most people who receive referrals for infant intervention aren’t really sure how to teach infants how to imitate, how to be reciprocal, and how to be synchronous with their caregivers. Those aren’t the things that are usually in the minds of very early interventionists. I think we are going to get better at that. In terms of being able to measure the impact of early intervention on brain development, certainly physiologic and anatomical measures are beginning to be combined. Technology is also going to be something that comes into play more in early interventions. Although, really nothing can replace human interactions, and they are going to have to be the biggest component of very early intervention.
In your opinion, is autism prevention in the future at all?
Autism is heterogeneous. What we see in a 10 year old with autism, some of that is probably preventable. I do think there are certainly parts of autism and aspects of severity of autism that we should be thinking of in terms of prevention. For some children with autism, early intervention is going to be so profoundly effective and activate so many aspects of learning, generativity and social engagement that the diagnosis may not be relevant when the child is older. For other children, it may be that these very early interventions reduce the comprehensiveness and severity of the disorder, and also the associated co-morbidity, like anxiety and depression. This can make autism less severe, and help these children become more self-confident, socially capable, and able to be integrated with their peers.
What are your own personal goals for the future for your work in autism?
My overarching goal is to identify earlier markers for autism and develop very early intervention. My other objectives for the future are to take everything I know and translate it into materials that can be used widely and inexpensively in the public sector, and to train the next generation of people who are creative and compassionate researchers and clinicians. Emily Hotez is an intern with the Autism Science Foundation. She is a senior at the George Washington University, working towards a major in psychology with a concentration in developmental psychology and a minor in Spanish. Her 17 year-old sister Rachel has Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) and continues to inspire her interest in autism spectrum disorders. Emily is currently working towards applying to graduate programs in psychology.