Monday, June 06, 2016

What if There Were a Cure for Aspergers?

John Elder Robison is a world-recognized authority on life with high functioning autism, also known as Asperger’s Syndrome. The best-selling author of “Look Me in the Eye,” “Be Different,” and “Raising Cubby,” he has worked to help people understand what life is like for those with Asperger’s and to gain acceptance for those whose brains work differently. Yet, when he was offered the chance to take part in an experimental research study utilizing TMS, transcranial magnetic stimulation (basically energetic stimulation of targeted parts of the brain), in order to discover the underlying brain causes of autism and see if it would help change autistic brains, he jumped at the opportunity. 

In “Switched On,” he tells of what happened next. His results were unexpected and certainly not the same as that which everyone who took part in the study experienced, but they open up the possibility of brain transformation and the pros and cons of such a treatment. 

The treatments had both immediate effects that sometimes faded as well as long-lasting effects that are still with him. He is a changed man. He became able to make eye contact, something he had always avoided. He also began to be able to read and feel empathy for other people’s emotions. It even impacted his hobby of taking photographs – his use of color changed as well as his compositional style. 

Yet, as is often the case with profound personal change, these positive aspects came at a great cost. As . the treatments were going on, he feared the loss of the insights he experienced. “Imagine that all your life you have seen the world in black and white. Meanwhile, everyone around you describes the beauty and richness of color. . . Now try to imagine what it would feel like to experience a glimpse of the truth. You step into a lab, and for a few hours, scientists turn on your ability to see the world in all its vivid color . . . Then the colors fade. Your world in once again black and white. Yet you are forever changed.”

He also had to deal with changing relationships as he came to terms with social mistakes he had made and reinterpreted events in his past in a new light. 

Robison promised the researchers that in his book, he “would do his best . . . to share both the promise and risk and complexity of these new technologies.” He has succeeded in this mission. He discusses his own experience as well as the ethical question of whether we should even be trying to fix Asperger’s seeing as those with this syndrome often have talents in a particular area that might be lost. In trying to change them, the world might be losing the inherent benefit they can bring to the world. This isn’t a simple situation. 

As the mother of one diagnosed teen Aspie and another who I believe is on the spectrum as well, I admit I’m conflicted about the potential for these new technologies. They aren’t available to the general public yet, but they hold some promise. I see first-hand the struggles my sons have with social cues, fine motor skills, and learning disabilities. They don’t lie, which can be a positive, but their honesty can also be brutal, and unless I am actually crying (which doesn’t happen that often), they never can sense that I am upset. I know they love me and that it is not intentional, but it still hurts. 

I have an adopted neurotypical daughter. One day when she was about three years old, she had done something I didn’t like and I had made a face at her. “Why are you mad at me?” she asked. It was such a simple question but it shocked me. I had been a parent for thirteen years, but it was the first time one of my children had picked up on a nonverbal cue that I was upset. 

Would my children be “better” if these issues could be fixed? Maybe, but they would also be different. In any event, my children are well on their way to adulthood and any widespread use of this technology is a few years out. It will be up to them if they ever want to pursue it. As Robison indicates in “Switched On,” the therapy seems to work better on adults anyway, having a more long-lasting effect, perhaps because they have more experience to work with. 

“Switched On” makes for compelling reading for anyone interested in Asperger’s or the ethics of brain-changing treatment. It raises more questions than it answers, but Robison’s first-hand account is an important part of the conversation. 

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