From Early Screening to Early Intervention
How do most families proceed after early ASD screening, and how are their decisions affected by formal diagnosis?
For parents who suspect that their child might have Autism Spectrum Disorder (ASD), the decision of whether to seek a formal evaluation can be a weighty one. There can be stigma attached to the label, or there could be catharsis in being able to put a name on what’s going on. Recent advances in research have made it possible to do ASD screenings at younger and younger ages, allowing parents to find out whether their children might be ‘at-risk’ before the age at which ASD is typically diagnosed. This can be beneficial for families because they can start getting services for their child ahead of time, but we don’t yet have a sense for whether they typically do. We also don’t know how the decision to seek intervention is affected by receiving a formal diagnosis.
A recent research study by Katharine Suma and colleagues looked into what happens after a child is suspected of being at-risk for ASD. In their study, they noted some things that seem intuitive, and some that may at first seem surprising, but ultimately make sense. First, they found that when children were deemed ‘at-risk’, just under half (48%) of families started early intervention before having their child assessed for ASD. When parents received an ASD diagnosis, which happened in 56% of the at-risk cases in the study, if they weren’t getting services before, they were found to be more likely to start with an intervention – 80% of families with a diagnosis had started an intervention within 6 months of assessment, vs. 60% for those without a diagnosis. Similarly, if they were among those 48% of families getting services before, they were found to be more likely to seek more hours of treatment – over two and a half times more likely than families who did not receive a diagnosis of ASD. Finally, those diagnosed were more likely to get services that specifically target the skills that are often impaired in children with an ASD diagnosis. When this was looked at in more detail, an unfortunate fact emerged: generally only those with access to private funds ended up getting that more ASD-specific type of support instead of general speech therapy.
But Wait, There’s More!
The researchers also found that the quality of the interactions between the child and the parent, as measured by their ability to maintain a shared topic and have a fluid, connected interaction, was a good indicator of whether or not a family would increase the amount of intervention after an ASD diagnosis. In families whose interactions had the most room for improvement, those parents were more likely to seek additional services, shows the parents’ understanding of their child’s needs for extra support. However, it is often difficult for parents to find high intensity, affordable services for their children, and as such, most of these additional services only added a couple of hours per week. Importantly, though, the researchers found that the parent-child interactions that improved the most were in the families whose children were receiving more hours of intervention, a finding consistently seen in studies of early interventions. They also found that an improvement in communication ability occurred in the toddlers with ASD from 24- 31 months, meaning that there is potential for positive change to occur during this time that is right around the time that an ASD diagnosis would normally occur, showing how important it can be to seek services for children as soon as possible.
What does this mean?
While we should definitely note that the children who did not receive a diagnosis were still assessed (as opposed to not receiving a diagnosis because one was not sought), it appears that the formality of the diagnosis may have been a motivating factor in the decision of how much, if any, intervention to pursue. As a parent, you know your child better than anyone, and your child is going to be the same person with or without a formal diagnosis. But for some, the knowing may be influential in deciding what to do about it. And given how much evidence there is of the positive effects of early intervention, it may be a factor worth considering.
Suma, K et al. (2016). After Early Autism Diagnosis: Changes in Intervention and Parent-Child Interaction.
Journal of Autism and Developmental Disorders. doi 10.1007/s10803-016-2808-3