We must connect Hoosier parents to early services for children with autism
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This spring, the Centers for Disease Control and Prevention released a report that revealed, once again, an increase in the number of children diagnosed with autism spectrum disorder. The latest numbers show that one in every 36 American children has been diagnosed with autism, an increase from one in every 68 a decade ago. Twenty years ago, the incidence was estimated to be one in every 150 children.
Certainly, it’s troubling to see an increase in autism diagnoses, but it might be more troubling to consider the reason why those numbers are up: Many children with autism were not being diagnosed. And that means they were not receiving services, supports and accommodations that would make their lives better.
I worry that we’re still not reaching all of the children who could be helped, and that many children who could be receiving services are not.
While the steady increase in the number of children diagnosed with autism occasionally has raised concerns—and occasionally wild accusations—about what is causing the increase, more recently we’ve come to realize that much of the increase can be attributed to better data. For example, researchers have improved the sampling of underserved populations and, as a result, gotten more complete data on the incidence of autism in minority communities. The data also seems more accurately accounts for girls with autism, who had been underrepresented in past studies.
Most important, perhaps, thanks to improved community education, it’s likely that more people simply are having their children tested. That is crucial because, as much as we don’t know about autism, we do know this: Early detection and services can have an enormous impact on a child’s – and, ultimately, an adult’s – quality of life. That’s why the CDC has established its Act Early Initiative, and why Indiana has its own affiliate, Act Early Indiana.
The problem is, some parents and caregivers who try to act early quickly run into roadblocks.
Parents who suspect a delay in language skills, social development or other behavioral milestonescan begin to investigate their concerns through a number of online resources that track developmental milestones or offer initial assessments (many resources can be found at www.autismspeaks.org/screen-your-child). If initial assessments suggest further investigation is needed, a parent should then talk to a health care provider, who will examine the child and, if warranted, make a referral to a specialist who can make an official diagnosis.
But this is where problems can start. If a family doesn’t have a primary care physician, they might struggle to find one who takes new patients; if they do have one, they might find that, even with a referral, getting in to see a specialist can take weeks or even months. With each hurdle, services are delayed, and parents who aren’t equipped to work through such obstacles might simply give up, leaving the child with no meaningful interventions.
We need to help families work through these barriers and get services as quickly as possible. I believe this process starts with making sure parents have resources for recognizing developmental delays. While many online resources are tremendous, we can’t assume that every parent has access to a computer or an understanding of how to search for resources. So, we need to provide more and clear information at in as many places as possible.
In addition, we need to help parents understand that they don’t need a diagnosis of ASD before they can access services from a school or, for children under age 3, a First Steps provider. With school-aged kids, for example, they can get an Individualized Education Plan (IEP) that will outline accommodations that can be accessed even while the parent waits to see a physician or specialist.
In a perfect world, no family would have to wait months to get a diagnosis that unlocks services and resources for children with autism. In the world we’ve got, we need to do all we can to help children get the early intervention that can change their lives.