Are you a parent exploring the current genetic tests available for autism? If so, it turns out you’re not alone.
Three months ago while attending the Stanford University Autism Symposium, I had the good fortune of listening to a panel discussion about genetic testing in autism. The panel was titled, “Diagnostic or Treatment Value of Genetic Testing for Autism Spectrum Disorders,” and it was hosted by three brilliant, compassionate, dedicated autism experts – Drs. Joachim Hallmayer, Jonathan Bernstein, and Wendy Froehlich. These folks had a tough job. As the three experts in a room filled with 30-40 eager parents of children with autism, they had to portray the hope and potential of genetic diagnostic testing in autism, while simultaneously explaining how little it can actually do for parents right now.
An enormous amount of progress has been made in understanding the genetics of autism in the past decade. These early discoveries have fueled further research and encouraged pharmaceutical companies and biotechs to launch early stage research into potentially new therapies for treating autism. That said, it’s still early innings. As Drs. Hallmayer and Froehlich explained, at this point we’re only able to identify a contributing genetic cause of autism in 10%-15% of cases of people diagnosed with ASD who have diagnosed intellectual disabilities. Even studies of twins have suggested that genes account for less of the autism risk than do environmental factors.
Many of the parents in the room listening to this panel were in disbelief to hear this. 10-15%, that’s it? After processing for a few minutes, everyone had the following question. “As a parent of a child on the autism spectrum, should I get the current genetic tests available for autism?”
The answer is not at all clear, particularly given how expensive these tests can be, but the panel offered up several good questions for thinking about it, and making a decision for yourself.
The panelists pointed out that participating in a study and getting such genetic testing is very helpful for advancing the field’s understanding of autism – something that is important for all of us. If you do, they advise making sure you are with a doctor that is open to and educated in getting and helping you interpret the results of such tests. The panelists expressed that in the “next 10 to 15 years we hope to know a lot more about these conditions.”
If you’re a parent of a child with autism and are interested in discussing this, or any other topic with other parents like you, you can do so on MyAutismTeam.