John Elder Robison speaks forcefully, eloquently, and passionately about living with autism and his experience with an experimental treatment. Robison told his story and shared his understanding and observations on how society reacts to and treats people living with autism. And society isn’t doing very well in either realm.
Robison spoke of his inability, for most of his life, to read other people’s reactions and feelings. As to writing, he calls himself “a truck driver among writers” and “an autistic guy speaking out on behalf of our tribe”. Robison spoke about being teased as a child and feeling bad all his life.
Robison talked of “systemized discrimination” and the “institutionalized shame” of those living with autism. He also spoke of the extraordinary gifts and talents of people with autism. He believes there is a greater variation and range in people with autism than the general population. They have peaks that go higher and lows that go lower.
Almost 10 years ago Robison wrote Look Me in the Eye, a New York Times bestseller. It is currently number 6 on the non-fiction list. His latest book, Switched On: A Memoir of Brain Change and Emotional Awakening , tells of the offer to participate in a trial to use Transcranial Magnetic Stimulation (TMS) in autism. The objective was to see if TMS would impact the ability to read others’ emotions and for Robison, he hoped TMS would make him “a little less disabled”. During his very interesting career, he spent time as a sound engineer touring with high profile musicians. He understands electromagnetic energy and decided to try TMS. He would participate in the trial. In the end, things did not turn out the way he thought they would. In some areas right after treatment TMS changed the way Robison saw the world. There were 30 experiments in all and they all elicited different responses. There were negative effects where he felt emotionally overloaded by everyday life. There were impacts in his home and work life. But the effects weren’t sustained at a high level. However it left him with an understanding and a sense that his brain built a new natural foundation.
On the matter of whether TMS is a choice for others, Robison was circumspect. It’s not clear who would benefit from TMS and what it means for people of different ages. There are benefits and there are risks to changing to one’s perception of the world after decades of living. John Elder Robison tells his story openly, honestly, with humour and at times with his self described ‘truck driver’ language. He endeared himself to the audience who could have sat and listened and asked questions much past the allotted event time.
John Elder Robison has contributed to work at the World Health Organization and the National Institutes of Health (NIH). The audience appreciated hearing how he was previously unable to work in a team of five people but with the NIH he worked with 30 people, “and they were all from government!” In working with that group he was described as a unifying voice.
There are many questions yet to be answered about the use of TMS in autism. Robison was careful to not make any blanket statements. Does someone living with autism need to be fixed? “We don’t need to be fixed, we aren’t broken”, he said.
If you weren’t at the event you missed an opportunity to hear an engaging, forthright presentation. His message is heartfelt and does a great deal to raise awareness. It wouldn’t surprise me if his new book will also make its way to the New York Times bestseller list.