Autism spectrum disorder (ASD) is a complex condition that unfolds over time. It doesn’t start with the flip of a switch, and is not caused by any single event. In fact, the emergence of autism may be very subtle, with its first signs difficult to detect with standard instruments. However, critical changes early on may lay the groundwork for later symptoms of the disorder.
ASD is a developmental phenomenon. By studying brain and behavior in children at risk (this includes children who have an older sibling with ASD) we are able to better understand autism and the complex manner in which it unfolds. We hope to make accurate predictions not only about the existence and progression of autism, but also how certain brain features might impact a child’s ability to respond to interventions. This would enable us to better understand autism, how and why some children develop it and possibly provide very early or even preventative interventions.
Brain Development and Individualized Intervention
Much of my work has focused on restrictive and repetitive behaviors associated with ASD. This includes recent findings suggesting that babies who go on to develop autism show increased repetitive behavior as early as age 12 months. I am currently investigating which aspects of brain development explain atypical repetitive behaviors in babies who develop autism, and possibly predict which children will develop such behaviors. The ultimate goal is to find better ways to screen and identify children at the greatest risk for developing autism while better understanding what causes it.
My current work with early brain and behavioral markers is designed to help foster individualized interventions. If we understand the brain and behavioral aspects of autism early on, we’ll likely be able to do a better job of targeting interventions to individual children. Current intervention approaches are certainly quite good, but most are “one size fits all.” Less than half of young children with autism make significant gains with these standard interventions. This means a large portion of children with ASD are not making optimal gains—and it indicates that there is room for improvement in how we match interventions to individual children. It is feasible that neuroscience, combined with quality behavioral measurement, may inform how to optimally individualize the timing and content of treatment for a given child, who is unique compared with all other children with autism. As the saying goes: if you’ve met one child with autism, you’ve met one child with autism. They’re all very different and our interventions need to reflect that.
Infant Brain Imaging Study: Breaking Down the Data
The first phase of our Infant Brain Imaging Study (IBIS) looked at 6-, 12- and 24-month-old children and found dynamic changes in brain and behavior during that timeframe. The second round of IBIS, now underway, is following infants from age 3 months to age 3 years. The babies in this study have an older sibling with autism, which significantly increases their risk of developing the disorder. Our findings and those of others indicate about a 20% chance of the younger sibling also developing ASD. A primary goal of IBIS is to leverage multiple types of brain imaging data in addition to behavioral markers to identify those infants who are most likely to develop autism.
There is no static feature of autism, so to understand how it unfolds we have to look across the first years of life by following children longitudinally. Now, in its second round of funding, IBIS is screening babies as early as three months of age all the way to three years of age, or the period from around birth to preschool. Ideally, we’d like to follow these children through elementary school to determine later outcomes, such as whether they are in a general education classroom, how they are doing in terms of academics and social skills and what strengths and weaknesses they have, in addition to tracking brain development into childhood. A baby isn’t necessarily born with autism as we know it. Instead, ASD unfolds over time in a complex manner which may differ from child to child. Autism is truly a “developmental disorder” in that it is in flux across the lifespan. For example, recent work suggests that brain and behavioral change associated with ASD may extend well into adulthood. We need to follow children over time to understand the truly dynamic nature of autism.
Much of my work with IBIS is through a grant I have from the National Institute of Mental Health. The overarching goal of this grant is to link brain with behavior to help make more accurate predictions about behavioral outcomes, particularly as the may relate to intervention. For example, does a child’s brain at age one predict key behaviors at age two? At this point, we are looking closely at structural features of the brain as well as the circuits which connect brain regions.
In the next phase, we will examine the role early intervention plays in brain and behavioral development. For example, do early profiles of brain and behavior explain why some children respond well to intervention while others do not? Currently, we are organizing all of the data and putting it together in a way that we can analyze. My hope is to be able to have preliminary results by December.
My Work With Autism Speaks
Another component of my work that I find especially rewarding is community engagement. My colleague, Jed Elison, and I put together a free webinar for parents through Autism Speaks. Our purpose was to help parents better understand repetitive behavior in typical and atypical development, as well as to identify possible early warning signs and what they mean in infants and toddlers.
I am also involved in the Baby Siblings Research Consortium (BSRC) for Autism Speaks. The BSRC is a group of scientists from around the world who study babies who are at familial risk for autism. As a consortium, we discuss where the field of baby siblings research is headed and share resources and cutting edge findings. The goal is to collaborate together to raise all ships and expedite discovery.
On a local level, we are pursuing a similar aim through the new Minnesota Autism Initiative. The MAI brings together autism researchers from multiple disciplines across the University. We are hard at work to build something unique at Minnesota that we hope will make a real difference for individuals with autism and their families. In March, we hosted our first annual ‘Day with the Experts’ for providers and family members across the state. We are very enthusiastic about the programs of research, training, and community engagement we are building through the new MAI.
Autism is a complex disorder that can evoke anxiety from parents. Obtaining early services or a diagnosis requires professional assistance, but parents are on the front lines in terms of identifying possible warning signs. Here are three tips for parents who are concerned about the development of their child:
- Trust your gut. If you suspect something is awry, don’t wait it out. It can be tempting for parents to tell themselves that their child is just behind and they’ll catch up. In many cases that is true. But you don’t want to wait until your child has fallen so far behind that catching up becomes a major challenge. It’s better to act early.
- Don’t worry about labels. I know it’s easier said than done, but parents shouldn’t worry too much about labels like autism when they’re thinking about their baby. It’s probably not helpful to focus on that. Instead, think about what your child’s specific needs are, what their strengths and weaknesses might be, and which options will help your child reach the milestones that they may be behind on.
- Be a careful consumer of information. It’s tempting to get information from the internet. Of course, everyone does so and it’s a great resource, including for information about autism. But be careful what you read on ASD. I think more than nearly any other health topic, there’s a lot of misinformation and false promises about autism online. Go to websites that you can trust, or better yet, consult a specialist in person rather than rely on the internet alone.
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