Barry Gordon can usually tell by 6 a.m. whether it will be a good or bad day for his son. If Alex is happy, laughing, and unbothered by a change in schedule, it’s a good sign. If there’s no laughter, no joy in watching his favorite television shows, or if he is troubled by even a minute-long delay to his routine, it will likely be a rough day.
Gordon is a behavioral neurologist and cognitive neuroscientist at Johns Hopkins with an interest in improving language and memory. He is also the father of Alex, a severely autistic 19-year-old.
In recognition of National Autism Awareness Month, I spoke with Dr. Gordon, a Dana Alliance for Brain Initiatives member, about the recent report on the rise of the autism rate, the importance of diagnosis, and the challenges he faces with his patients and his son.
The Center for Disease Control and Prevention reported last month that 1 in 88 American children has some form of autism. This immediately sparked debate over whether the increase was due simply to better detection and reporting, or if there was an actual rise in autism’s prevalence, perhaps due to environmental factors. Gordon believes more people are being brought to the attention of professionals, and he also thinks criteria is not consistent across different studies. “What criteria were used to derive the numbers?” Gordon asked. “How were the facts used in those criteria established? How were the facts verified? If I told you the incidence of writer’s block was 99.9999 in 100, with Isaac Asimov being the one out of one million, would you be alarmed about yourself, or would you ask, ‘How was that determined?’”
In fact, the label a person might receive within the autism spectrum is not of particular consequence to Gordon. “Labels are less important to me for my work than the internal pattern of abilities and disabilities, as well as the individual’s personality. The labels in common use are too broad for the distinctions I need to make and the ones we have to pursue.”
“I’m struck by the variations in capabilities across individuals and also in the same individual over time,” Gordon said. “For example, if you tried to assess someone like my son on what I’ll call a bad day, you’ll get a different picture of his capabilities, including his sociability, than if you assess his abilities on a good day. If someone came in and did an assessment, they’d get a different rating of him on different days. And that is something that diagnosticians grapple with.” Gordon strongly believes that early intervention is important, for autism and other disorders. “To the extent that you identify traits that could be problematic for the individual, you’re better off trying to work on them early rather than later.”
Currently, Gordon uses behavioral training and transcranial direct current stimulation (tDCS) to alter brain activity in an attempt to improve function. He has studied patients with strokes or other acquired brain diseases, as well as high-functioning individuals with autism. His next goal is to enroll low-functioning individuals with autism. “tDCS is a very useful tool in its own right for investigating brain function, but it may also help us improve or redirect brain activity in individuals,” Gordon said. “That is what we’re trying to do, coupled with behavioral training, to give these individuals a boost that might be long-lasting.”
The differences among people with autism as well as the shift in capabilities within an individual from day to day are both frustrating and inspirational for Gordon. “In the subjects I work with, if it just doesn’t look like it’s going to work out early, it’s probably not going to work out any time in the rest of the day. Certainly with my son, it’s almost a given that if it starts off to be a bright day, there ain’t nothing that’s going to bring him down and his capabilities and resiliency seem to be greater. To contrast, if he wakes up on the wrong side of the bed, things he would shrug off some other days can really upset him. What is it? What is it that’s increasing his capabilities and making him more resilient? What is it that’s fighting against this autism and rigidity? That’s a puzzle to me.”
“It makes me hopeful that if we can only make their good days more frequent or figure out what makes them good, we can tap more of their potential.”