It’s been eighteen years since I learned I am autistic. A lot has changed since then. Doctors once said, “There’s no cure for autism. You will always be the way you are.” For me, that was tempered with the recognition that “the way I was” was in many respects okay. I’d built a small business, married, and had a kid. But at the same time, I still felt like an outsider. It was as if the rest of humanity was at a party and I stood outside, gazing through the window on a cold winter night.
As the years passed, the conversation changed. People looked at autistics like me – independent adults – and realized autism conferred gifts as well as disabilities, at least for some of us. A sense emerged that autism was a difference, not a disease. We began to speculate about great figures in history that may have been autistic. Maybe it was okay to be autistic. Maybe it was even special, in a good way.
Meanwhile, the explosion in diagnoses – particularly among school aged children – led to public outcry and dramatic increases in research funding. The conversation that sprang from that was rather different. Some pundits called autism a public health crisis or an epidemic. Even the U.S. government chimed in, calling its research funding initiative the “Combating Autism Act,” as if we were locked in battle.
Researchers searched for an “autism gene,” but the closest they came was identifying a thousand different mutations that all may be implicated in autism. Scientists found families where autistic traits are passed down from one generation to another. In other families, autism appears in one person as if out of nowhere. Other researchers found curious correlations – such as the discovery that a mother is more likely to have an autistic child if she lives less than a mile from a Los Angeles freeway.
With such disparate findings it’s almost certain we are dealing with multiple types of autism. There may well be some environmental factor that is making some people autistic today, but at the same time, research strongly suggests a thread of inherited autism has been part of humanity forever. Are those multiple “autisms” or multiple paths to the same end? We have many factors – genetics, environment, even disease – that precipitate autistic development in a child. One response to that is the current push to develop screening tools to identify autistic infants at the earliest possible age. That will allow for life-changing early intervention, or so the thinking goes.
Researchers have come up with several promising screening tools that identify signs in infants less than one year old. While those tests need more validation before they can be widely deployed their existence raises a significant question: What sort of intervention might we do on an infant?
Today’s autism therapies teach older people communication and life skills. They are of no use on babies in bassinets. But other scientists propose an answer – we might use powerful psychiatric medications or newer, cutting-edge techniques like brain stimulation to change the course of their brain development.
Is that really something we should be doing? We have this concept in medical research called informed consent. That means the person who takes part in a study has a reasoned understanding of the possible risks and benefits, and they go into it with eyes wide open.
That’s fine for intelligent adults. How does an infant give consent? Babies don’t, but their parents do. Right now, parents consent to experimental therapies when their children’s lives are at risk and other options are exhausted. But autism is not a deadly disease. In fact, we cannot have any idea how an autistic child will turn out as an adult. We can’t know that about any child. So how much experimentation should we subject them to?
That brings us to this crossroads in autism medicine – our Rubicon. There are three factors pushing doctors to act: 1) New screening tools will allow us to detect autism biomarkers in very early infancy. 2) Emerging neuroscience therapies offer a promise of developmental change, if only we can change the right things. 3) Parental fear of the “specter of autism” causes some mothers and fathers to push for the earliest possible action, even as none of us fully know the risks.
As impressive as these advances in medicine are, they take us closer and closer to “engineered people.” If we reshape human development to leave autism by the wayside, what’s next? What happens to our first victims – the ones who get the treatment before it’s fully worked out? And after? Will we optimize for engineers, soldiers, and teachers? What place does that leave for ordinary natural born people, like most of you and me?
This won’t stop with infants. The techniques that work to reshape a baby’s brain will also have strong effects on older brains. Back in 2003, writer Lawrence Osborne described how pulses of energy transformed his artistic abilities, as he sat in a neuroscience lab. His was one of the first accounts of cognitive transformation through the use of Transcranial Magnetic Stimulation, or TMS.
Following a demonstration session, Osborne wrote, “After I had been subjected to about 10 minutes of transcranial magnetic stimulation, the [tails of cats I was asked to draw] had grown more vibrant, more nervous; their faces were personable and convincing. They were even beginning to wear clever expressions.
I could hardly recognize them as my own drawings, though I had watched myself render each one, in all its loving detail. Somehow over the course of a very few minutes, and with no additional instruction, I had gone from an incompetent draftsman to a very impressive artist of the feline form.”
The scientist who introduced Osborne to TMS was Allan Snyder at the University of Sydney, Australia. Dr. Snyder was focused on autism, savants, and exceptional cognitive ability. He wondered if TMS might unlock that in anyone, and showed Osborne some of his own hidden abilities as an example. Most recently, I described my own encounters with TMS in my new book, Switched On. In that, I experienced cognitive enhancements that go far beyond what Osborne recounted.
Those are some key words. Cognitive enhancement. Techniques like TMS put us on the cusp of altering some very elemental parts of who we are. While I tried TMS in hopes of relieving a particular thing that felt disabling to me, others will think they can supercharge already good abilities. It’s inevitable, just as ADHD medication routinely hops-up ordinary college students before tests.
Maybe that’s fine for an adult. What about parents making choices for children? It’s virtually certain that will be happening. Right now, you can go online and buy pocket size electrical brain stimulators that are a close cousin to TMS. They are marketed as “enhancement tools” for video gamers, and at this point, totally unregulated. More powerful devices are surely on the way, but the technology has already outstripped our knowledge of how and where to use it.
Yet many parents believe they know best, and should have an absolute right to decide if their child should be treated or left alone, with respect to almost anything - disease or difference alike. As steadily more powerful tools emerge, might we revisit that concept? I'm not suggesting someone else usurp parental rights, but rather a limit might be placed on anyone's right to alter children whose lives are not at risk.
So what’s the future for cognitive enhancement, via drugs or stimulation? Will it be available to people with disabilities, or anyone? Will parents be allowed to enhance kids, or kids enhance themselves? It’s high time we started this conversation. Faster than most people realize, science fiction is becoming science fact.
John Elder Robison is an autistic adult and the Neurodiversity Scholar in Residence at The College of William & Mary. He is the author of Look Me in the Eye, Be Different, and Raising Cubby. His newest book is Switched On, a memoir of brain change and emotional awakening.