The International Meeting for Autism Research (IMFAR) started on Wednesday with a press conference and a pre-conference program focused on stakeholders. I was fortunate to be able to attend last year, but not this year. I did call in to the press conference, though and it brought back some of the excitement for me.
Before going on, note that the press conference is covered at the Thinking Person’s Guide to Autism (by people who actually attended!) as IMFAR 2012 Press Conference
The press conference highlights a number of studies which are about to be presented at the conference. It was stressed that IMFAR is a conference where the abstracts are reviewed before being approved, but the studies are not peer-reviewed as in a journal. It is a conference for very new results.
One study highlighted was Beyond ASD: Developmental Outcomes of High Risk Siblings . This is a follow on study to the well publicized baby siblings study that found about 19% recurrence risk for baby siblings of autistic children. This is the study that looks at the other 81%, the kids who did not get an autism diagnosis. Short answer—even among the children who did not get an autism diagnosis, the baby siblings had more autistic traits than children who were not baby siblings of autistics.
Here’s the conclusion from the abstract:
Conclusions: At three years, HR [high Risk]children without an ASD had higher levels of ADOS symptom severity, and lower levels of developmental functioning than LR [Low Risk]children. They were more likely to occupy clusters characterized by lower levels of developmental functioning, and less likely to occupy a cluster characterized by higher levels of developmental functioning and low levels of symptom severity. Descriptively, two-thirds of HR children occupied Clusters 1 and 2, characterized by normative outcomes, whereas one third occupied Clusters 3, 4, and 5, characterized by elevated ADOS severity, lower developmental quotients, or both. These results suggest an early ‘broader autism phenotype’ in HR siblings characterized by ASD symptoms sub-threshold for diagnosis and/or developmental delays.
and the summary:
A new study presented at the International Meeting for Autism Research examined the development of the younger siblings of children with an Autism Spectrum Disorder (ASD). ASDs are developmental conditions characterized by problems with interaction, communication and repetitive behaviors. Previously, an international consortium of researchers found that almost one in five of the younger siblings of children with an ASD themselves developed an ASD. The researchers’ new findings suggest that of the younger siblings who did not develop an ASD, one in three faces challenges at three years of age.
The challenges faced by these younger siblings of children with ASD include slight delays in verbal and nonverbal functioning and somewhat elevated levels of autism-related characteristics. Examples of a child’s autism-related characteristics—which are not as severe as those of children with an ASD—include lower levels of back-and-forth play with others, and lower levels of pointing to express interest in what is going on around them. Overall, the researchers say, the majority of high-risk siblings are developing typically at three years of age, but a minority face challenges that appear to reflect subtler forms of ASD-related problems. Follow-up of these children through school age is necessary to understand their long-term outcomes.
The second study highlighted was Shared Decision Making (SDM) and the Treatment of Autism Spectrum Disorders (ASDs) . My guess is that the themes presented in the summary below will not come as a great surprise to those who have read parent narratives on the internet. I.e. that parents look to pediatricians for treatment options for their autistic kids, but the doctors often don’t see autism treatment to be something they can do.
The goal of this qualitative study was to describe factors influencing shared decision making for treatment decisions by pediatricians and parents of children with autism spectrum disorders (ASD). We conducted in-depth interviews of 20 pediatricians and 20 parents of children with ASD 2-5 years of age. The analysis of the interview transcripts revealed that many pediatricians did not view treatment for autism spectrum disorders to be within their scope of practice or competence. Parents did not view their pediatrician as knowledgeable or invested in making treatment recommendations. We also found that parents often independently pursue treatments, not benefiting from professional guidance regarding safety and effectiveness. Results from this study indicate substantial barriers to shared decision making between pediatricians and families in the care of autism. Research is needed in order to understand how best to help 1) parents have realistic expectations of their pediatrician and 2) improve training of pediatricians to be effective partners in care of children with ASDs and their families
The third highlighted study was Oxytocin’s Impact on Social Cognitive Brain Function in Youth with ASD . The study member who presented this for the study called it “very exciting and very preliminary”. Two features of this study stand out immediately: (1) it is a double-blind, crossover, randomized control study and (2) it includes fMRI (functional magnetic resonance imaging).
Here is the summary:
We are presenting the preliminary data from the first ever double blind, placebo controlled study of changes in brain activity in children with an ASD (ages 7-18) after a single dose of oxytocin. The initial results indicate that oxytocin, administered via nasal spray prior to the scan, increased activity in brain regions known to process social information. Oxytocin is a naturally occurring substance that is produced in the brain and plays a role in regulating social abilities.
These results provide the first, critical steps towards devising more effective treatments for the core social deficits in autism which may involve a combination of validated clinical interventions with an administration of oxytocin. Such a treatment approach will fundamentally alter for the better our understanding of autism and its treatment.
There were two more studies highlighted at the press conference but, I’m sorry to say, I was not able to listen to those presentations.
As children with autism spectrum disorders (ASD) grow up, they embark on quite different developmental pathways. Some individuals learn to live independently, maintain friendships, and find work, many require some support in their daily lives, and still others experience many challenges. Understanding how very young children with ASD develop important early skills can provide vital clues that might help predict these various pathways. For example, researchers have suggested that greater social interest and awareness in children with ASD may have a positive impact on language, which in turn may have a positive influence on other aspects of learning and development. This model of “cascading” effects is intuitively appealing but has not been validated in ASD. The Canadian “Pathways in ASD” Study (funded by CIHR and other provincial governments and foundations) is uniquely able to shed light on this issue as it is the largest prospective follow-up study of very young children with this disorder. As part of this study, we used information about 365 2-to-4-year-olds with ASD to examine whether such cascades occurred across early social competence and language abilities in the year after diagnosis. On average, the children made significant progress in social competence and remarkable gains in language abilities over that year. Within this one-year period, greater change in social competence in the first year was associated with more growth in language skills. However the reverse wasn’t true: early language ability had a much smaller effect on changes in children’s social competence. These findings therefore support the idea of early developmental cascade effects. Early advantages and gains in social competence may lead to advantages in other domains. However, children whose very early social skills lag farther behind at time of diagnosis are also less likely to show language progress. This study highlights the importance of early interventions that focus on emerging social competence (versus only language skills), as these are likely to “spill over” across other developmental pathways.
This new prospective study of six-month-old infants at high genetic risk for autism identified weak head and neck control as a red flag for autism spectrum disorder (ASD) and language and/or social developmental delays. Researchers at the Kennedy Krieger Institute concluded that a simple “pull-to-sit” task could be added to existing developmental screenings at pediatric well visits to improve early detection of developmental delays.
While previous studies have shown that head lag indicates developmental delays in children with cerebral palsy and preterm infants, postural control in infants at risk for ASD had not been examined. In this research, Dr. Landa and her team assessed infants in a “pull-to-sit” task, a simple measure of postural control in infants. The findings suggest that motor delays may have an important impact on child development.