Guest post by clinical psychologist Zachary Warren, director of the Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) at the Vanderbilt Kennedy Center. TRIAD is a member of Autism Speaks Autism Treatment Network.
As a psychologist, I’ve devoted my professional life to improving the early diagnosis and treatment of autism spectrum disorder (ASD). And over the past decade, I’ve witnessed the emergence and reach of some outstanding advocacy, awareness and screening initiatives.
Yet every day, as I sit with families to deliver autism diagnoses, I’m reminded how complex and distressing this process remains for most families. The average age of autism diagnosis in our country remains between 4 and 5 years. Meanwhile, leading experts conclude that most children with ASD could be accurately identified by age 2.
Since 2007, the American Academy of Pediatrics has called for universal autism screening at early, well-child checkups. We’re making great strides in this regard. Ideally, any concerns flagged during the check-up should be quickly evaluated by a team of diagnostic specialists who can help initiate prompt treatment.
The reality is that such teams, or even individual specialists, are not available in many areas of our country. Even when available, the waitlists for their services may be so long that children referred for further evaluation must wait months – even more than year – to be seen.
As a parent and clinician, I’m shaken by how stressful it must be to be told that my child might have autism – and then be told to wait 6 to 12 months for the definitive answer.
Given the importance of early intervention, we need to be able to say to families: “Would you like your child to be seen this week or next?”
I’ve been fortunate in my role at Vanderbilt to work with leading experts on how to make universal screening and rapid early diagnosis of autism a reality for all families. My colleagues in this effort have included pediatric and educational leaders here in Tennessee, as well as leading researchers throughout the Autism Speaks Autism Treatment Network (AS-ATN).
Training pediatricians to diagnose autism
Recently, we reported on our research gauging the value of training primary-care pediatricians to diagnose autism within their own practices. In other words, to provide diagnosis outside of specialty centers such as those in the AS-ATN.
We also developed a training model for pediatricians, one that teaches diagnostic interviewing and interactive assessment procedures. We hoped that it would enable pediatricians to offer families prompt evaluation – no referral needed.
In our pilot study, we rolled out this training program across many regions of Tennessee, including rural and low-resource communities. We were pleased to find that many of the participating pediatricians started providing autism assessment and diagnosis as a regular part of their practices. Further, we tested the accuracy of their work. Most scored quite well – with substantial agreement between their diagnoses and those done in a university autism clinic.
Are we compromising our ideals?
Some have voiced legitimate concerns about this work. Ideally, they say, all children should have the opportunity to see a team of experts and receive the most comprehensive assessments.
I don’t disagree with this ideal. However, I do disagree with the math. There simply aren’t enough specialty providers or multi-disciplinary teams to provide rapid, early diagnosis of ASD for all children. If we hope to reduce the age of diagnosis, we must develop effective autism-diagnosis training programs for our community healthcare providers.
I don’t think I can overstate the value of lowering the average of autism diagnosis to between 2 and 2½ years of age. This could translate into an extra two to three years of early intervention! And that’s potentially life changing for children with autism and their families.
To make this a reality, we’re tapping the resources afforded to us through our participation in the AS-ATN. Our partners also include the Tennessee chapter of the American Academy of Pediatrics and the Tennessee Early Intervention System.
We hope that our program can become a model for other states. To this end, we’ve already developed similar training programs for pediatricians in Indiana, Oklahoma, South Carolina and Puerto Rico.
I want to thank Autism Speaks tremendous community of families, volunteers and donors for supporting this work and the larger mission of the Autism Speaks Autism Treatment Network. I look forward to updating you on our future progress.
Learn more about the AS-ATN here.
Subscribe to Autism Speaks Science Digest for more autism research news, blogs and more, delivered biweekly to your inbox.