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Research Discussion with Autism Expert Dr. Rebecca Landa
Kennedy Krieger Institute researchers have published the first study of ethnic differences in the presentation of early symptoms of autism in toddlers, and the results show that children from a minority background have more delayed language, communication and gross motor skills than Caucasian children with the disorder. Drs. Rebecca Landa and Saime Tek of the Center for Autism & Related Disorders at Kennedy Krieger Institute concluded that subtle developmental delays may be going unaddressed in minority toddlers until more severe symptoms develop.
In the following question and answer session, Dr. Landa discusses the findings and what they mean for families and professionals. For more information on this research, please visit the press release announcing the study's publication in the Journal of Autism & Developmental Disorders.
Q: Why did you conduct this study?
Landa: I actually did my graduate thesis on developing a system for identifying language delays in non-English speaking minority children, so I've always had a keen interest in the ways in which we can ensure minority children receive the same developmental support as non-minorities. We had a golden opportunity at Kennedy Krieger, where we have intervention studies for kids as young as ages one and two, to look at kids with autism as early as possible to see if there were differences in behaviors.
Q: How do your findings build upon prior research in the field?
Landa: We know that the prevalence of autism is the same for minority and Caucasian groups, and also that minority children with ASD are diagnosed later than Caucasian children. However, the literature tells us very little about whether behavioral features of autism in minority children differ from that of Caucasian children. To my knowledge our study is the first to compare the early symptoms of autism in minority and non-minority toddlers.
Q: What are the most interesting highlights of the study findings?
Landa: My prediction was that we would find differences between the groups of children, but the findings surprised me because they were so specific. We used three standardized instruments to evaluate the child's symptoms -- the ADOS, Mullen Scales of Early Learning and a caregiver questionnaire -- and all three clearly indicated a difference between minority and non-minority children. In every case, the minority children were further behind in communication development than their Caucasian peers who were the same age and from the same socio-economic status. In addition, the minority children showed more severe communication-based autism symptoms.
Families in the study tended to be middle to upper class, which is not surprising because these families are most likely to enroll their children in research studies.
This is a small, preliminary study, but when we see similar results across all three evaluation instruments, the findings are compelling. If we had found one increased value on one subtest of one measure, obviously we wouldn't have published the finding. But the thing to keep in mind is that the families in this study were also enrolled in an early intervention study -- so these parents were proactive. What about all the toddlers out there with ASD who are not being identified? I worry that the minority toddlers who are being identified with ASD are just the tip of the iceberg, and that there will be long-term consequences for those children who are not accessing early intervention.
Q: Where do we look to find the cause of the differences?
Landa: This could be cultural or biomedical or maybe both. I do think that there are some cultural factors -- and not just for minorities -- that we should look at closely.
First, as a society, we're very, very complacent about really early language delays. We don’t really sweat it if a child is late to talk or fails to show early-emerging communication skills. If you are a parent, especially of a boy, who expresses concern, it's almost a cultural response that people tell you, "Oh don't worry -- he's just a boy. Remember Tom? He didn't talk until he was three and look at him now -- he's a doctor!"
Second, in some communities the pediatrician is a respected authority figure. And so even though mom may have been worried, she thinks, "He is MY doctor. He cares about MY child. I'm going to tell myself to relax. The doctor says he/she is fine."
Q: What will this mean for parents?
Landa: The reason for this difference between minority and non-minority children is a topic for further research, but what we can focus on now is getting children identified early and into intervention programs. As with anything in medicine, early detection leads to better outcomes. We know that. We want intervention to begin when brains are more malleable and still developing their circuitry.
But think about how hard that is. These are one- and two-year-olds. And at one or two, kids aren't talking in big sentences yet. If your child isn't talking and doesn't seem to understand much, but you don't already have another typically-developing child, you have to be pretty astute to see the missed milestones.
We can't be complacent about kids who are late talkers. If a child isn't developing communication milestones on time, we have to look more closely and more deeply at the reasons why. For example, we need to look to see how development is unfolding in things that contribute to communication development, such as motor skills, play, smiling at people, initiating engagement, and more. Delays in communication development are a signal for parents, grandparents, daycare workers, aunts and uncles to open the door and take a deeper look at a child.
Q: What about pediatricians and other professionals?
Landa: Medical professionals often make assumptions in the way that we ask parents questions. We assume that parents understand our words as we mean them. A health care professional might ask, "Does your child talk?", when what he/she really means is, "Does your child use ten words daily to intentionally communicate something?" And the mom might respond, "Yes," when she is thinking, "Well, last week I said 'sit down' and he repeated back 'sit down.'"
This issue doesn't belong to any one cultural group -- this is about a gap between professionals and parents in how to communicate about behavioral health and development. Unfortunately in the pediatrician's office there isn't time to embellish about what is really being asked. I'm trying to address this through a screening instrument that I have developed that uses video examples to show typical behavior versus autism. If the research validates its usefulness, parents will have opportunity to see what children's social, communication, and play should look like, and be better able to advocate for their child when in the doctor's office.
I believe we can eventually help parents see the early signs of autism and communication delays. However, when it comes to autism spectrum disorders, we must remember that parents remain hopeful that their child's delays are temporary. They don't want to hear a diagnosis of ASD. For this reason, we have to use multiple strategies when communicating developmental concerns to parents. One strategy is to screen for autism and other development delays, talking to parents about the importance of early detection of delays without going straight to "autism". Let's get these kids into the help net. Then when we understand the parent and child more, we can more confidently and supportively step into discussions about diagnosis of ASD, a territory that is a bit more frightening. The process of delivering a diagnosis of ASD should, when possible, be tailored to each individual family's needs.
Q: How will this impact future research or clinical care?
Landa: I am really committed to being able to understand how to improve early detection of ASD in minority children and we have a lot of work underway.
I am in the process of interviewing parents from minority backgrounds about their entire experience securing a diagnosis for their child. I'm asking them where they were diagnosed, when they were concerned, how many doctors they saw in as they were seeking to understand their child's delays, and, in retrospect, what caused a delay in the diagnosis. This is where the answers are -- with the parents themselves.
I'll also be applying for funding to develop interventions that are specifically targeted at the more severe symptoms that we are seeing in these minority children, and writing a paper on the challenges of recruiting minority children for research studies.
Q: What's the take-home message?
Landa: The big take-home message is that we have to get out and pound the pavement more to help improve behavioral health literacy in the lay community, and be less complacent about communication delays. Maybe complacent is too strong of a word -- but I think we have to take language and developmental delays more seriously because they give us the opportunity to look more comprehensively at the child. Helping our children have healthier development is really possible, and their future is in our hands.
Q: Is there anything else you'd like to share?
Landa: We want to encourage parents to become good observers of their children's development, and to learn the indicators of delays in communication, social, and motor development. At Kennedy Krieger, we developed a campaign called "Why wait and see?" We're working with minority groups in the state of Maryland at a grassroots level and aligning with a number of minority pediatricians. I hope in two years we've made a real dent. Two years sounds terrible to me though. I want it to be faster, but it just takes that kind of time.
Dr. Landa thanks HRSA, NIH and the Krieger Foundation for funding this research.