John Elder Robison and TMS therapy
John Elder Robison is and has been many things: author, autism advocate, educator, creator of special effects for rock concerts, parent, engineer for Milton Bradley, government advisor. He is also a thought-provoking and entertaining public speaker, as I learned at a recent presentation.
He spoke on the campus of University of California, Riverside, at the invitation of its SEARCH Center. (“[T]he mission of SEARCH is to provide support, education, advocacy, resources, community and hope to families who have loved ones on the autism spectrum.”)
I first became aware of Mr. Robison several years ago when an acquaintance who has a son with Asperger’s recommended reading Robison’s book Look Me in the Eye. In it, Robison describes his turbulent childhood, teen, and young adult years with undiagnosed Asperger’s.
One of Robison’s current pursuits is advocating for the autism community to unite, find their voice, and stand up against discrimination and negative media coverage. He began his talk at UCR by describing the parallels he sees between the harsh treatment people with autism face and the discrimination Jews, blacks, and the LGBT communities have faced. Society became more accepting of those groups once they organized and became vocal about not being lesser humans. People with autism must do the same.
Robison said that by the time people on the spectrum reach young adult years, they’ve repeatedly absorbed the message (through words, actions, or reactions) that they are failures. As a result, their motivation to engage in the world is very low. Thus we have a generation of people with ASD (autism spectrum disorder) “hanging out in the basement,” with their talents and gifts untapped. In Robison’s view, organizing a movement to increase society’s acceptance is the way to break this cycle.
He shared that some researchers believe that the brains of people with autism have more plasticity than is found in neurotypical brains. In the extreme, this plasticity may account for the abilities of savants, It also leads to the exceptional skill many people with autism develop in fields that interest them. However, researchers speculate that the flip side of this increased plasticity is emotional blindness.
At this point in the talk, Robison reminded the audience that his memoirs document how he was chronically oblivious to the emotions of everyone else. Then he asked us, why would someone like that invest his time to advocate for others, as he’s doing now?
He credits his increase in empathy to having received experimental TMS treatments beginning eight years ago – the topic of his newest book Switched On.
TMS, or transcranial magnetic stimulation, targets specific areas of the brain with magnetic pulses to increase function. It’s noninvasive and has few side effects. So far in the US, the FDA has approved its use in treating depression that has been unresponsive to medication. Robison was part of a clinical trial to see if TMS can alleviate the emotional blindness of people on the spectrum.
After his first session, he was disappointed that his ability to interpret emotions from facial expressions (as tested by the researchers) had not improved. However, other things did change. The first thing he noticed was the extreme clarity with which he heard and appreciated every element of familiar music recordings. The researchers told him this was a side effect.
With continued sessions, he experienced other effects related to emotions – not all of them having welcome outcomes:
- For the first time in his life, he became emotional about tragedies that befell people in other parts of the world.
- His wife’s depression, which had never bothered him before, affected him so much that they had to divorce.
- He can’t go to movies, because their emotional impact causes him to cry a lot.
- He realized that most neurotypical people, far from being the happy, fulfilled, caring people he’d imagined them to be, walk around burdened with sadness, fear, anger, and greed.
- He almost became suicidal. The clinical staff pointed out to Robison that unlike most people, he hadn’t had a lifetime to adjust to feeling emotions.
- He can now collaborate successfully with others. Before, his successes had only resulted from creating things on his own.
If you’d like to read more about the potential of treating autism symptoms with TMS, here’s a clear, cautious article written by Lindsay Oberman, a TMS researcher at Brown University. This report from NPR also emphasizes caution in interpreting the results of the few trials that have been conducted to date.
Overall, there’s widespread agreement that more studies are needed, to investigate concerns such as which parts of the brain to treat, how frequently, with what dose, and at what age. Those interested in participating in a study of TMS therapy for autism symptoms can check out the US National Institutes of Health Clinical Trials website.
TMS is also being studied in relieving disorders such as anxiety, addiction cravings, adult ADHD, obsessive-compulsive disorder, and schizophrenia. If studies on these or other disorders are of interest, you can change the search term on the Clinical Trials webpage to see if any are being conducted in your area.
Going back to Mr. Robison’s talk: he summarized by saying that TMS has the promise of an emerging technology. As with other types of therapy, it’s not for everyone, but it’s probably good for some.
And while we all welcome the expansion of the toolkit for treating problems associated with autism, Robison believes the most powerful way to improve the situation of people on the spectrum is through forming an active, vocal community.